Disabilities 3 volumes : Insights from across Fields and around the World

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Author: Catherine A. Marshall | Elizabeth Kendall | Martha E. Banks Ph.D. | Mariah S. Gover

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How to go to your page This eBook contains three volumes. Each volume has its own page numbering scheme, consisting of a volume number and a page number, separated by a colon. For example, to go to page 5 of Volume 1, type vol1:5 in the “page #” box at the top of the screen and click “Go.” To go to page 5 of Volume 2, type vol2:5 in the "page #" box… and so forth.

Disabilities

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Disabilities Insights from across Fields and around the World

Volume 1 The Experience: Definitions, Causes, and Consequences Edited by CATHERINE A. MARSHALL, ELIZABETH KENDALL, MARTHA E. BANKS, AND REVA MARIAH S. GOVER Foreword by Thomas Bornemann

Praeger Perspectives

Library of Congress Cataloging-in-Publication Data Disabilities / edited by Catherine A. Marshall … [et al.]. v. cm. Includes bibliographical references and index. Contents: v 1. The experience : definitions, causes, and consequences—v. 2. The context : environmental, social, and cultural considerations—v. 3. Responses : practice, legal, and political frameworks. ISBN 978-0-313-34604-0 ((set) : alk. paper)—ISBN 978-0-313-34606-4 ((vol. 1) : alk. paper)—ISBN 978-0-313-34608-8 ((vol. 2) : alk. paper)—ISBN 978-0-313-34610-1 ((vol. 3) : alk. paper) 1. People with disabilities. 2. Disabilities. I. Marshall, Catherine A. HV1568.D54 2009 362.4–dc22 2008045497 British Library Cataloguing in Publication Data is available. Copyright © 2009 by Catherine A. Marshall, Elizabeth Kendall, Martha E. Banks, and Reva Mariah S. Gover All rights reserved. No portion of this book may be reproduced, by any process or technique, without the express written consent of the publisher. Library of Congress Catalog Card Number: 2008045497 ISBN: 978-0-313-34604-0 (set) 978-0-313-34606-4 (vol. 1) 978-0-313-34608-8 (vol. 2) 978-0-313-34610-1 (vol. 3) First published in 2009 Praeger Publishers, 88 Post Road West, Westport, CT 06881 An imprint of Greenwood Publishing Group, Inc. www.praeger.com Printed in the United States of America

The paper used in this book complies with the Permanent Paper Standard issued by the National Information Standards Organization (Z39.48-1984). 10 9 8 7 6 5 4 3 2 1

Contents

Foreword Thomas Bornemann

ix

Preface Paul Leung

xiii

Introduction

xix

Chapter 1.

Chapter 2.

How Rich and Fulfilled My Life Has Been: A Personal Perspective of Mobility “Impairment” Ela Yazzie-King

1

Understandings of the Disability Concept: A Complex and Diverse Concept Marianne Hedlund

5

Chapter 3.

Disability Harms: Exploring Internalized Ableism Fiona Kumari Campbell

Chapter 4.

But Stroke Happens to Older People Doesn’t It? The Experiences of “Young” People Following Stroke Tara Catalano and Elizabeth Kendall

Chapter 5.

“Come Sit with Me; Let’s Yarn Together for a Little While”: Resilience Factors in Facing Cardiovascular and Emotional Disabilities Lauraine Barlow

19

35

55

vi

CONTENTS

Chapter 6.

Disability in Arab Societies Numan Gharaibeh

63

Chapter 7.

We Can Cry Later: A Story of Surviving Cancer Paige Stager

81

Chapter 8.

Disability as a Human Perception: Personal and Professional Reactions to American Indian Families’ Narratives about Their Children’s Disabilities R. Cruz Begay, Betty G. Brown, and Roger G. Bounds

Chapter 9.

Traumatic Brain Injury and Disability as a Consequence of Assault: Focus on Intimate Partner Violence Rosalie J. Ackerman and Martha E. Banks

Chapter 10. “I Thought I Was Going to Live Forever” Reva Mariah S. Gover Chapter 11. Coping Following Traumatic Brain Injury: Lessons from Autobiographical Accounts Elizabeth Kendall, Melissa Kendall, and Heidi Muenchberger Chapter 12. Functional and Psychosocial Aspects of Late-Onset Hearing Loss Charlene M. Kampfe Chapter 13. Disability in Islam: Insights into Theology, Law, History, and Practice Isra Bhatty, Asad Ali Moten, Mobin Tawakkul, and Mona Amer Chapter 14. Living with a Learning Disability and Other Marginalized Statuses: A Multilevel Analysis Katherine E. McDonald, Christopher B. Keys, and Fabricio E. Balcazar Chapter 15. Persons and Nonpersons: Intellectual Disability, Personhood, and Social Capital among the Mixe of Southern Mexico George S. Gotto IV Chapter 16. Sharing My Strengths and Winning against Obesity Michelle Pieper

87

107 123

129

143

157

177

193 211

Chapter 17. The Discursive Construction and Invalidation of Disability Stephen Lee Hodgkins and Sid Baility

213

Chapter 18. Shubharthis in India: Destigmatizing Schizophrenia, a Move toward Inclusion Anuradha Sovani

231

CONTENTS

Chapter 19. Excerpts from Meditations of the Heart on the Workings (or Not) of the Hand Bernadette Blount Salley

vii

243

Chapter 20. A Taonga Is a Taonga in Any Language Huhana Hickey

249

Afterword: Reclaiming Globalization for Disability—Further Insights

257

Index

267

About the Advisory Board Members

273

About the Editors and Contributors

277


Foreword

M

ental health and physical health are as inextricably linked as their counterparts, mental illness and physical illness. The latter can result in various short- and long-term disabilities. But there is a growing trend, especially outside the United States, to focus attention more on health than illness, with an emphasis on enhancing people’s capabilities rather than just mitigating disability. This movement toward social inclusion is an exciting advance, promoting people’s talents and assets so that they can live the healthiest, most fulfilling lives possible. For this to be implemented broadly, however, it is important that policies be put in place that demand inclusion of people with all disabilities as fully contributing members of society. These policies must be enacted in all areas of society, not just health. Ensuring that all citizens have access to the myriad services they need to live in society requires that social inclusion policies be adopted in housing, transportation, employment, and other areas that impact all our lives. The editors of these three volumes hope to engage readers in thinking about the ways in which different frameworks lead to different practices and how these practices then affect people’s lives. For example, they hope to engage the reader in thinking about how political and legal frameworks affect people with disabilities. Believing that “collaboration and the creation of partnerships are necessary components of a global strategy for enhancing the lives of persons with disabilities and the professionals who serve them” (Marshall et al., 2004, p. 20), the editors have embarked on a process reminiscent of the work of The Carter Center. The mission of The Carter Center Mental Health Program is to increase public knowledge of and decrease stigma associated with mental illnesses.

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The program does this via strategies such as the annual Rosalynn Carter Symposium on Mental Health, which brings together diverse and multidisciplinary mental health care professionals, government agencies, consumer groups, and advocacy organizations (Palpant, Steimnitz, Bornemann, & Hawkins, 2006). One chapter in these volumes, authored by Paula Madrid and colleagues, addresses how depression and psychological distress can be created within the context of response (or lack thereof) to a national disaster. The editors tapped Madrid’s expertise based on the presentation of her work during the 22nd Annual Rosalynn Carter Symposium on Mental Health Policy, “Disaster Mental Health in the Wake of Hurricane Katrina,” in 2006. The editors first came together during the forum “Participatory Action Research and Indigenous Ways of Knowing: Women as Researchers and Partners in Community-Based Disability and Rehabilitation Research,” held in Honolulu, Hawai’i, in 2004. Over 30 Indigenous and non-Indigenous women from the United States and the Asia-Pacific region participated in this forum, including a member of the Carter Center Mental Health Task Force. Attendees were women with and without disabilities, researchers, grassroots community members, and community activists. The purpose of the forum was to engage a global community in articulating and redressing disparities in accessing health care and human services via culturally appropriate research methods and networking—networking that would support action outcomes taking place within local communities. The stories of some of the participants formed the underpinnings of these volumes. In a preliminary conversation about this forum in 2003, I suggested that understanding Indigenous issues and disability might have implications for world peace. One of the more interesting undercurrents that drove the forum in Hawai’i was the question of community and the various levels one’s community can encompass. Can community really exist at an international level? The Indigenous women at the forum certainly comprised one community. All participants, all Indigenous and non-Indigenous women, motivated and perhaps personally shaped by chronic illness and disability, comprised another level of community. It is important that we recognize our relationships to one another in these various levels of community, whether they are explicit or more subtle. These relationships are fluid but can be surprisingly strong. The Carter Center representative, Ethleen Iron Cloud-Two Dogs, concluded that support for such efforts “can potentially lead to greater workforce development, self-sustenance, and greater health and productivity for Indigenous women with disabilities, their families, and communities.” Surely that is a key component for world peace. Community is built of multiple layers of identity, interaction, and understanding. Where community begins with the world—with global networking and international collaborations—our work, whether it be understanding disability, supporting disability, or finding resources that address disability, continues in the towns, villages, streets, and suburbs where people with disabilities and their families reside. These volumes began with a few women who wanted to share lessons learned by reaching out to other countries and the world’s Indigenous people who had chronic conditions or disabilities—a relatively small number of people given the global population. Yet such a model

FOREWORD

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of interaction can add to our understanding of cultural differences and cultural similarities, highlight the role such understanding can play in reducing health and economic disparities, increase international respect for one another, and set the stage for more effective local intervention. The publication of these volumes is a step forward as part of a movement that can lead to a better understanding of those who are different from us, a movement that can contribute to world peace.

REFERENCES Marshall, C. A., Burross, H. L., Gotto, G., McAllan, L., Vásquez Martínez, P., García Juárez, et al. (2004). The United States and Mexico: Creating partnerships in rehabilitation. Rehabilitation Psychology, 49(1), 14–20. Palpant, R. G., Steimnitz, R., Bornemann, T. H., & Hawkins, K. (2006). The Carter Center Mental Health Program: Addressing the public health crisis in the field of mental health through policy change and stigma reduction. Preventing Chronic Disease, 3(2):A62. Retrieved from www.cdc.gov/PCD/issues/2006/ apr/05_0175.htm. Thomas Bornemann Director, Mental Health Program, The Carter Center


Preface Paul Leung

W

e know that disability is a relative construct. Individuals and countries describe disability in different ways. Disability may be the result of war, malnutrition, environmental pollution, disease, genetic conditions, domestic violence, accidents, and aging. It affects individuals in different ways. At the same time, disability is not just an individual issue, for it affects the whole community. Community, national, and cultural norms all define disability, and do so within contexts that are often idiosyncratic. We also know that disability can be seen as a function of environmental obstacles. Further, there are cultural differences in the perception of disability. We know that in some ethnic groups and cultures, the word disability itself has very little meaning. The functional limitations of some people are simply addressed as part of everyday life. Finally, legal frameworks are enacted in different ways in different countries, resulting in different experiences. The International Classification of Functioning, Disability and Health (ICF) is a global attempt to provide a universal definition of what constitutes disability, but this is yet to be fully accepted. This series explores many of these issues. However, a number of chapters in this series allude to the link between poverty and disability, often highlighting the lack of resources available to persons with disabilities and their families. It is evident that the breadth and seeming durability of the connection between poverty and disability requires that issues of poverty be given much more attention. The preamble to the United Nations Convention on the Rights of Persons with Disabilities (2006) noted “that the majority of persons with disabilities live in conditions of poverty, and in this regard [we recognize] the critical need to address the negative impact of poverty on persons with disabilities.”

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This recognition only reinforced what Elwan (1999) and the World Bank concluded: “despite the dearth of formal analysis, it is clear that in developing countries, as in more developed areas, disabled people (and their families) are more likely than the rest of the population to live in poverty” (p. i). We all understand that poverty affects a large proportion of our world today, including those who live in more developed areas, albeit in less severe ways than those living in what is often called the developing world. Adding some urgency to this issue is the likelihood that we may be facing what Josette Sheeran (2008) of the World Food Program calls a “silent tsunami.” This comment refers to the rapid worldwide increase in food prices along with food shortages. Those who are most likely to be inundated by this tsunami will be the world’s poor, including persons with disability. As result, the global community adopted the Millennium Development Goals (United Nations, 2007), with a commitment to reduce poverty by 50 percent by 2015. Issues related to class (which usually involves income, education, and occupation) further complicate the equation (Banks & Marshall, 2004). There is some evidence that families with higher incomes in the United States have lower disability rates than families with lower incomes (Yang, 2006). There have been limited efforts directed toward reducing poverty among persons with disabilities and their families (World Bank, 2002). For example, Kiva (www.kiva.org) is a person-to-person micro-lending scheme and although persons with disabilities are not prevented from applying, none of the field partners specifically encourage them to do so. Certainly we know that being poor is also relative in the United States. The U.S. Department of Health and Human Services (DHHS) (2008) poverty guidelines for determining eligibility for programs vary in terms of numbers of persons within a household and geographic location. For one individual, the amount of income meeting the poverty threshold in the United States is $10,400 per year. Obviously, this is vastly different from the more common measure of absolute poverty that is used globally of $1 a day (Sheeran, 2008). Common sense suggests, and available evidence has confirmed, that there is a link between disability and poverty in both developed and developing countries (Sum, Khatiwada, & Palma, 2006). Sum et al. indicated that limited employment options and lower earnings result in poverty and poverty, in turn, leads to poor health, poor nutrition, and greater exposure to unhealthy lifestyles and working conditions. Disler (2008), in a presentation on the need for rehabilitation, pointed out that more than 50 percent of males with disability and their families moved into poverty. Jeffrey Sachs (Chen, 2006), the economist perhaps most well known for poverty reduction, has noted the impact of disability in his work. Clearly, the relationship is, at a minimum, a two-way one. As Elwan (1999) pointed out, “disability adds to the risk of poverty and the conditions of poverty increase the risk of disability.” Although a relationship between disability and poverty obviously exists, little is known about the interaction of what may be useful strategies to address this situation. In reality, the relationship is most likely to be highly complex, but without systematic analysis or research, we will be hard pressed to understand it at all. Marshall (2006) found a tendency in the literature to avoid discussion of socioeconomic status in relationship to disability, perhaps

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partly due to expediency. However, this situation may also be due to the fact that the American disability experience has focused on middle-class European American values to the exclusion of other populations. Marshall’s research and experience suggests the need for renewed attention on the importance of socioeconomic factors, especially poverty, in the lives of persons with disabilities. Poverty presents challenges to persons with disabilities in many ways and often is the primary reason they are unable to participate actively in their communities. For instance, micro-financing is a poverty reduction strategy that is often mentioned in the literature. Yet micro-financing appears to be underutilized by persons with disabilities. As with many mainstream programs, persons with disabilities and their families find themselves on the outside. Although an expectation of equal access to provider services is accepted, difficulties occur when providers themselves continue to harbor doubts about persons with disabilities. How persons with disabilities and their families are perceived within the larger community and how they view themselves continue to be barriers to full inclusion and participation, especially in economic programs that may offer real opportunity to move out of poverty. Similarly, those who have disabilities are often denied education and training options, based on false assumptions about their learning abilities. These barriers limit their potential for income generation in the future, and also restrict the contributions that persons with disabilities can make within the larger community. Thus, these inherent barriers have a doubly negative impact, both for the individuals/families involved as well as for their communities. It is important to remember that having a disability as an individual, or its presence within the family, increases costs. There are economic costs created by the fact that having a disability or a family member with a disability requires additional resources and accommodations or modifications. These costs are not always recognized formally or informally and, except in certain forensic situations, are not factored into expense equations. There are also psychic costs consisting of anxiety, worry about inability to provide for the family, discrimination, and the potential exclusion from being able to make choices. The corresponding loss of control can contribute to the development of a fatalistic worldview, where one’s actions have little impact. Thus, persons with disabilities or their families who are living in poverty have additional liabilities further preventing them from moving out of poverty. Ethnicity and race also complicate issues of discrimination beyond disability, further adding to poverty status. Persons with disabilities from minority racial/ethnic populations in the United States have historically found themselves to be more disadvantaged economically than their peers who have no reported disability (National Council on Disability, 1993). Some consider poverty to be a culture, having a value system that impacts on behavior, but others believe this a myth that allows for lower expectations both among those affected and the larger society. Perhaps what is important is the mindset that people have about themselves and their family in relationship to the larger society. Regardless, being poor or being of a particular race or ethnicity has an impact on how disability is perceived and, thus, on how a person acts or behaves.

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Ethnicity and race have different implications dependent on context. In American society, issues around race have historically been about African Americans and the legacy of 400 years of slavery. American blacks led a civil rights struggle for equality culminating in the 1960s with the passage of the Civil Rights Act. The success of the civil rights movement expanded to include other racial and ethnic groups and then beyond race to sexual orientation and disability. The civil rights movement was a precursor to the passage of the Americans with Disabilities Act in 1990, which provided persons with disabilities civil protections similar to those related to race. However, disparities for persons with disabilities continue to exist based on racial and ethnic membership within the American context. Ottenbacher and colleagues (2008) found disparities in postacute rehabilitation outcomes, with non-Hispanic whites having higher functional ratings at discharge than minority populations. Issues of access to rehabilitation programs based on race continue to exist (Leung, Marshall, & Wilson, 2007). Looking beyond the American scene, discrimination and conflict related to race and ethnicity is not uncommon. We have only to remember how genocide has occurred, whether it was in Rwanda, Bosnia, or Cambodia. Add the experience of disability to race and/or ethnicity and issues of equity and discrimination are magnified. This double disadvantage has been debated in Great Britain for some time (Vernon, 1997). Even in situations where race may not be the most obvious basis for discrimination and unequal treatment, discrimination may occur on the basis of skin color (Wilson & Senices, 2005). In some contexts, these nuances may also reflect long-standing cultural attitudes. For instance, the Chinese perceive light skin in a more positive way because lighter skin suggests a person with wealth who has not worked outside (i.e., not a peasant). The impact of these variables, while relatively unresearched, may nevertheless be significant and cannot easily be ignored. The content of these volumes is particularly significant given the “postAmerican world” (Zakaria, 2008) of this 21st century. No longer are issues of disability found to be only relevant in the Western context where, because of available resources, nations have had the luxury of developing systems and programs to intervene and have had the ability to explore what disability means within the human experience. We are now a part of a global society where nations, societies, and cultures are linked in ways we do not always understand, realize, or even recognize. Elwan (1999) alluded to disability within developing countries as “preventable” consequences of conditions that are no longer found in more developed nations. What kind of global response ought there be to these preventable conditions? Disability will continue to occur in ever-increasing numbers with the global population getting older as a result of increasing life expectancy. At the same time, disability, regardless of definition, has the potential of having lesser impact on the individual and family than in the past. Better health care and the advent of assistive technologies bring a potential for a better quality of life and full inclusion into society for persons with disabilities, regardless of their socioeconomic status or race/ethnicity. Unfortunately, the benefits of such advances will occur only in nations where appropriate policies and programs place priority on their citizens who have disabilities.

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Given that there are finite resources in most countries, maybe the issue is one of social justice. Clearly, we must develop a context of resource allocation that will ensure equity for those who are most marginalized or disadvantaged in the world. This series is a much needed exploration and examination of disability on a global scale, but within a personalized human context. The voices in these volumes speak to our need for a common agenda that allows everyone to be able to participate and to choose who we wish to be or what we wish to do. No matter whether we live in wealthy, industrialized nations or poor, struggling economies, we have much more in common than we often realize.

REFERENCES Banks, M. E., & Marshall, C. (2004). Beyond the “triple-whammy”: Social class as a factor in discrimination against persons with disabilities. In J. L. Chin (Ed.), The psychology of prejudice and discrimination: Combating prejudice and all forms of discrimination. Volume 4: Disability, religion, physique, and other traits (pp. 95–110). Westport, CT: Praeger. Chen, I. (2006). Jeffrey Sachs stresses economics to reduce poverty. Brown Daily Herald. Reprinted in Poverty News Blog, retrieved from povertynewsblog .blogspot.com/2006/12/jeffrey-sachs-stresses-economics-to.html. Department of Health and Human Services. (2008). Poverty guidelines. Retrieved July 18, 2008, from aspe.hhs.gov/poverty/08poverty.shtml. Disler, P. (2008). Tertiary prevention: Rehabilitation in the management of chronic disease. Retrieved July 18, 2008 from www.pictureit.co.il/jerusalemconf/Media/ tuesdayhall1/peter%20disler.pps#12. Elwan, A. (1999). Poverty and disability, a survey of the literature. World Bank Social Protection Discussion Paper. Washington, DC: Work Bank. Leung, P., Marshall, C., & Wilson, K. (2007). Rehabilitation research from a multicultural perspective. In P. Leung, C. Flowers, W. Talley, & P. Sanderson (Eds.), Multicultural issues in rehabilitation and allied health (pp. 240–265). Linn Creek, MO: Aspen Professional Services. Marshall, C. (2006). SES factors influencing the definition of disability. Presented at the American Psychological Association Annual Convention, New Orleans, LA. National Council on Disability. (1993). Meeting the unique needs of minorities with disabilities: A report to the president and the Congress. Washington, DC: Author. Ottenbacher, K. J., Campbell, J., Kuo, Y., Deutsch, A., Ostir, G., & Granger, C. (2008). Racial and ethnic differences in postacute rehabilitation outcomes after stroke in the United States. Stroke, 39, 1514–1519. Sheeran, J. (2008). The silent tsunami. Economist, 13. Sum, A., Khatiwada, I., & Palma, S. (2006) The links between poverty and disability. Commonwealth Corporation Research and Evaluation Brief, 4(6), 1–4. United Nations. (2007). The millennium development goals report. Retrieved July 30, 2008, from www.un.org/millenniumgoals/docs/UNSD_MDG_Report_ 2007e.pdf. United Nations Convention on Rights of Persons with Disabilities. (2006). Retrieved July 18, 2008, from www.un.org/disabilities/default.asp?id=260. Vernon, A. (1997). Fighting two different battles: Unity is preferable to enmity. In L. Barton & M. Oliver (Eds.), Disability studies: Past present and future (pp. 255–262). Leeds: Disability Press. Retrieved August 11, 2008, from www.leeds .ac.uk/disability-studies/archiveuk/vernon/chapter17.pdf.

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Wilson, K. B., & Senices, J. (2005). Exploring the vocational rehabilitation acceptance rates of Hispanics and non-Hispanics in the United States. Journal of Counseling and Development, 83(1), 86–96. World Bank. (2002). Disability and poverty reduction strategies. Retrieved August 20, 2008, from web.worldbank.org/WBSITE/EXTERNAL/TOPICS/ EXTSOCIALPROTECTION/EXTDISABILITY/0,contentMDK:20193783~ menuPK:419389~pagePK:148956~piPK:216618~theSitePK:282699,00.html. Yang, S. (2006). New study links higher income with lower disability rates. Retrieved December 5, 2007, from http://www.berkeley.edu/media/releases/2006/08/ 16_disability. Zakaria, F. (2008, May 12). The rise of the rest. Newsweek.

Introduction

T

here is no one definition for disability. Initially, this set took its direction from definitions found in the Americans with Disabilities Act (ADA)—U.S. legislation that has had far-reaching impact both in its home country and as a model for legislation internationally. The ADA provides comprehensive civil rights protections for “individuals with disabilities.” An individual with a disability is a person who: • has a physical or mental impairment that substantially limits one or more major life activities, or • has a record of such an impairment, or • is regarded as having such an impairment (www.usdoj.gov/crt/ada/ t3hilght.htm). However, as these volumes emerged from the chapters submitted by people who have experienced disability personally, as family members, as health professionals, and as members of the academic community, it became clear that indeed an entire volume was needed just to present and explore definitions of disability. These volumes present contemporary viewpoints of the issues that confront people with disabilities or those who are concerned with disability in some way. Who are those of us concerned with disability? We are “flawed people.” In Getting to Maybe: How the World is Changed (Westley, Zimmerman, & Patton, 2006), the authors begin by declaring, “This book is not for heroes or saints or perfectionists. This book is for flawed people . . . who are not happy with the way things are and would like to make a difference. This book is

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for ordinary people who want to make connections that create extraordinary outcomes.” We are flawed people writing for and with ordinary people. We were brought together as coordinators of, supporters of, and participants in the 2004 international forum Participatory Action Research and Indigenous Ways of Knowing: Women as Researchers and Partners in Community-Based Disability and Rehabilitation Research. We have come to know each other a bit more through the process of coediting these volumes. We have been surprised and pleased to hear from several of the chapter authors that their writing—coming together with coauthors—was also an opportunity to grow and learn from each other. These volumes explore current understandings of disability from different perspectives and highlight different approaches and philosophies around the world regarding disability. It is our goal to stimulate global communication and exchange of knowledge on these topics among, again, ordinary people. The three volumes in this set include contemporary examinations of disability using psychological, cultural, social, legal, and political frameworks. The chapters describe unique and important aspects of a given country or system that help the reader not only understand a particular place or approach but also all enable a conversation about global exchange and utilization of information, perspectives, and models. The chapters also include reviews of the literature, conceptual or theoretical work, research studies, descriptions of innovative approaches to disability, experiential narratives, and poetry that reflects personal reactions to disability. We trust that the reader is not confused by the change in genre among chapters, but rather embraces the diversity of presentation as we embrace the diversity of experiences from which they were created. We do not live in an “either/or” world: “Utility and beauty join to form the world of immediate experience. Utility and beauty feed off of each other. Each without the other leads nowhere. Together they transform the world of immediate experience into a new world of unlimited possibilities” (Ittelson, 2007, p. 283). In each volume, we have combined scholarly texts with those written from personal experience—narratives that reflect reality from the perspective of those who are living with disability—or from the perspective of choosing not to identify as having a disability. We have combined the power of personal narratives and the rigor of academic research in a series that highlights how the value of a community voice is as important as the empirical word. Disability is a complex experience—in these volumes, poetry is juxtaposed against theory. Uniformity, which may be considered the antithesis of diversity and disability, is avoided. In compiling these volumes, we encouraged contributions from diverse cultures and are grateful to those Indigenous women whose stories formed the initial framework for these volumes. We sought to represent the world, but despite our international networks and our capacity to mobilize those networks rapidly in this age of technology and globalization, there are large regions missing from the text. Indeed the world is huge—and, ironically, the very technology that we now depend on to bring us closer and to bring information to us quickly, led us to systematically exclude chapters that would have been submitted handwritten on paper or perhaps painted on canvas.

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These volumes would only ever represent those who were able and interested to respond to our call for chapters—in English and submitted electronically. We are pleased with the diversity of authors, including people with disability, family members, advocates, health professionals, research professors, and nonprofit organizations. However, the selection of final chapters is an ironic reflection of the world of disability itself—despite our intentions, some voices are never heard, excluded by language, medium, access, inequitable standards around knowledge production, time, and cost. We have organized the chapters into three volumes that reflect the themes that emerged from the chapters we received. Volume 1 contains chapters that explore the way disability is defined in different countries and within different populations. In examining disability, it quickly became apparent that regions of the world and different cultural contexts were associated with different stereotypes, criteria, experiences, and consequences. It also became apparent that all views are equally important and all perspectives added something vital to our knowledge. This volume aims to explore these different approaches to disability and the impact of different definitions of both disability and health. Volume 2 builds on the social aspect of disability, containing chapters that explore the impact of disability on families, and more important, the impact of environment and context on disability. This volume seeks to describe disability as it is experienced in a range of social settings. Volume 3 focuses on responses to disability, including services, policies and legal approaches. This volume contains some interesting chapters about different legislation around the world, service delivery models, and innovative ways of supporting individuals with disabilities. The volume highlights linkages between definitions of disability, contexts or cultures within which disability occurs, and the legal or service responses that often define people’s lives. A most notable global influence in the past few years has been the United Nations Convention on the Rights of Persons with Disabilities—a global statement about the rights of people with disabilities irrespective of their country of origin. At the UN General Assembly marking the adoption of the convention, Secretary-General Kofi Annan stated: “Today promises to be the dawn of a new era—an era in which disabled people will no longer have to endure the discriminatory practices and attitudes that have been permitted to prevail for all too long.” The convention has been heralded as the embodiment of a “paradigm shift” away from a social welfare response to a rightsbased approach (Kayess & French, 2008), rejecting the “view of persons with disabilities as objects of charity, medical treatment and social protection” and affirming them as “subjects of rights, able to claim those rights as active members of society” (UN High Commissioner for Human Rights, 2006, as cited in Kayess & French, 2008, p. 3). Most important, the convention provides disability-specific interpretations of existing human rights and, in so doing, transforms (for instance) “negative” rights, such as the right not to be discriminated against, into positive obligations, such as the right to an accessible environment (Kayess & French, 2008). We are grateful that our work can be a small part of such an important global conversation.

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The efforts of many people have come together to make these volumes possible. We thank our families for their supportive understanding while we ignored them to focus on this work. Our Advisory Committee is listed in the back of each volume. Their kindness in supporting us and willingness to read chapters, providing both us and the authors with constructive feedback, is much appreciated—we are humbled by these actions. Among those on our Advisory Committee, we are especially grateful to the guidance provided to us by Jean Lau Chin, an accomplished psychologist, educator, writer, and leader. Jean shepherded the process of our proposal and led us to Deborah Carvalko at Praeger. Perhaps needless to say, we are also grateful for Deborah’s interest in our project, direction regarding the work, and patience with our seemingly endless questions. We are indebted to Stephanie Prout, Griffith Abilities Research Program, for her accuracy, promptness, and enthusiasm while assisting the editors in this endeavor. Ultimately, we are most grateful to the authors. It is their words that you will read and their experiences that will bring about desired change, increased understanding, and continued communication among us.

REFERENCES Ittelson, W .H. (2007). The perception of nonmaterial objects and events. Leonardo, 40(3), 279–283. Kayess, R., & French, P. (2008). Out of darkness into light? Introducing the Convention on the Rights of Persons with Disabilities. Human Rights Law Review, 8(1), 1–34. Westley, F., Zimmerman, B., & Patton, M. Q. (2006). Getting to maybe: How the world is changed. Mississauga, Ontario: Random House Canada.

CHAPTER 1

How Rich and Fulfilled My Life Has Been: A Personal Perspective of Mobility “Impairment”1 Ela Yazzie-King

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n taking a look at where I’ve been and where I am moving, I wouldn’t say that I have been blessed, but I would say that I do believe in God. I believe in a Great Spirit—a force out there who puts things in place so that your life, my life, can change. He arranges opportunities to grow from those changes and experiences. What others have deemed my disability, I choose to see as being at the wrong place at the wrong time. I fell or crawled under the vehicle. Whatever had happened had happened, and I’m not sorry for that. I truly believe that my life has been very rich. My disability has opened many doors for me. It has provided many opportunities that I really don’t think I would have had if I had been an able-bodied person. Even my family—my husband, John, and my children, Jessica and Michael—I might not have had them. So I look back and I do find that I have had a very rich and fulfilled life. My mother, my dad, gave me values, forging my foundation. I think that my parents wanted me to understand that self-image, who you are, how you see yourself, regulates the quality and the quantity of gifts we receive from our lives. As I’ve often said, I did not, do not, see myself as having a disability; I always envisioned myself as just being special. That self-image regulated my life. I did not limit myself. Yes, there were barriers, there were challenges, there were adventures, but I always knew that I would be able to overcome. I always knew that I could do these things. Sometimes I needed more time if there was a physical exertion involved, but everything else sort of fell into place. I believe in angels. I believe in guardians who watch over us, and when we decide to go on the wrong path, they kind of nudge us back over to the other side. I think that’s how life is. We don’t always listen to those special little voices inside us, those intuitive pushes and nudges. When we get arrogant

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THE EXPERIENCE: DEFINITIONS, CAUSES, AND CONSEQUENCES

we tend to think, “I’m going to do this or that because I know what’s best. I know everything.” Those are the things, I believe, that get us into trouble. My life has also been rich and fulfilled because of my husband, John, who has been very supportive. I do believe that the Great Spirit had a part in our relationship as I am John’s third wife. I felt, in the beginning, that our relationship would not last, but I went ahead because I thought, “Okay, it’s another stage and I’m not going to back out. Let me do this and see what happens.” Going with it led to marriage and two wonderful little ones, Jessica and Michael. I think we’ve learned from one another. We complement one another with our likes and dislikes. John has given me a life I enjoy, and now that Jessica and Michael have left home and are beginning their own lives, it’s a new and different stage for us. Twenty-four years later, we’re still enjoying one another’s company. Eight years ago, John bought a Harley Davidson motorcycle, and for a while I was very fearful that I would end up a widow. But over time I’ve come to realize, once again, that the motorcycle is yet another stage. John had told me, “It’s for you and me, Ela. It’s for you and me so that we can spend more time together, see new things, see new places, and have a different type of adventure.” And it struck me at the time, My God, we’ve been married twentyfour years and he is still looking for other ways we can spend time together! In regard to what I’ve come to understand as my legacy—I must begin with my children. Bearing them really changed my life. How could it not? As a mother, I was a part of creating not just one person but two. Watching them grow up, I tried to provide them the tools that they might need to live the kind of life that they envisioned for themselves. I am very proud that my children learned from me what it means to be Native—what it means to be Navajo. I’m sorry that their father’s parents did not live closer so that Jessica and Michael could have also learned about themselves through their relatives and the traditions they hold on that side. They, like my husband, are GermanIrish. I think my children are blessed to have such wonderful heritages from both of their parents. Of course, being Navajo, enjoying that connection to community and family is important to me. I am granted some peace knowing that through my family, Michael and Jessica have a place to call home whenever they are in need. I think that because my children have a Navajo cultural grounding, the knowledge that they have family and a space in the universe that they belong to will, in itself, help supply them with all the good qualities from a Navajo perspective: respect and acknowledgment of clanship (family relations), using appropriate language as “words” carry power and have meaning, as well as to respect the land, Mother Earth for we all are stewards of this Earth. I look forward to grandchildren. I think that would be the best way to continue life—to enjoy the little ones, to teach and spoil them, and then give them back to their parents. That would just be the very best and something I can continue to look forward to. I would like to be known as a good parent, a good daughter, a good sister, a good wife and friend, but also I would like to be known for trying to make a difference. To facilitate change, not just for myself but also for others who

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have disabilities. Teaching people, especially Native American children who are labeled disabled, so that they know that they can do and be anything they want. I believe that most of our limitations are self-imposed, meaning that we let our fears affect what we believe about ourselves. We fear that we can’t do this, we fear we’re going to fail, or people will laugh at us. Those limitations then create who we allow ourselves to become or who we don’t become. If I can leave anything behind, it would be to facilitate positive change even in the life of just one individual so he or she can say, “Now I understand. Now I know that I have no limits, and I can do and be whatever I want.” That accomplished I think my life and all the things that I’ve gone through will have been worthwhile and I would be very happy. I am first of all a Native woman, a member of the Navajo tribe. I am a member of my clan and of my immediate family. On my mother’s side, my clan is Todich ii nii (meaning Bitter Water Clan) on my father’s side I’m Tachnii nii (meaning Red-Running Into-the-Water Clan). That’s who I am. I see myself as a mother, a wife, and a friend. I don’t see myself as a woman who has a disability. It just happens that I do, but first of all I am all those other things. I am who I am because of not only my father and mother and the values they taught—I am also a reflection of my sisters, who pushed me. I am who I am because of all the people who have gone before me. People I have met, able-bodied and disabled, have influenced the person I am. Native or those of other ethnicities, they have all created the person I am today. Lately I find myself asking where am I going? I don’t see my professional life coming to an end anytime soon. Even when I am no longer working fulltime, I still want to be actively involved. Nationally, locally, I want to continue to make a difference in the lives of people with disabilities and for other Natives in general. There is so much that needs to happen on reservations, so much work left to do. For example, many young people don’t know who they are. Often they undervalue themselves with no clear idea of who they are or what they are worth; they turn to suicide as a means of escape. I want to continue to work with those types of individuals. I want to guide them— show them what they can accomplish, how they can be a happy person, if they don’t limit their own potential. But it’s more than just lecturing—it’s also a matter of giving them the time, giving them some experience, and opening doors. Sometimes, even when you open the door, you have to give them a push, nudge them, because they are afraid. My life definitely has been rich and fulfilled, but like anyone else, I wish some things could have been different. When my son, Michael, was little and we would go out, he wanted to hold my hand. Using crutches to walk, it was difficult and awkward to hold my son’s hand. There was also walking with John, especially when we were first married and he would try to hold my hand, but again, it was awkward. I think that’s one of the things that I wish I could change in regard to having a physical disability—not being able to walk and hold and hug someone as I’m walking. The ability to offer and receive the comfort of a physical touch is something I would have liked to experience. I would also have liked to just be able to run or go jogging. I think that would be so cool—to pick a path and start jogging. I think that would be a very wonderful experience, to feel your legs moving, your heart pumping, to

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breathe in and out, to feel the wind against your face and blowing through your hair. A light jog or a full-out run at top speed to push yourself for as fast as you can go—to feel that exhilaration—that would be really wonderful. The only time I came close to that is when I went horseback riding. Even though they weren’t my own legs, I felt like part of the horse running. In closing I want to say: Set a goal. It can be simple, complex, however you want. Set a goal and don’t worry about what you’re going to need to get there. Just do it, just live it. Live your life reaching for that goal. The other thing is: Don’t always try to do everything totally on your own. There are going to be times when you need assistance and that’s okay—nobody lives in this world alone. Maybe you’ll need that little push, a little encouragement from people close to you—your family, your children, your spouse, your extended family, friends. Take their support, use it, and be genuinely grateful for what they offer or what they can provide. Last, enjoy life! It goes by fast. You have to enjoy the time that you have—the children, the food, the sounds, the noise, the feel, the touch, and the taste. Try something new every day. Notice something new every day. Learn something new every day, and you will find that the world will continue to open up and reveal its secrets as your reward.

NOTE 1. Reprinted by permission of Ela Yazzie-King.

CHAPTER 2

Understandings of the Disability Concept: A Complex and Diverse Concept Marianne Hedlund

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his chapter describes how definitions of disability influence the way in which people with disabilities are treated. First, the chapter illustrates the different ways in which disability can be conceptualized in modern welfare states.1 Next, the chapter explores and explains how disability emerges as a complex and diverse concept within programs for people with disabilities. The chapter specifically examines four major definitions of disability. It further illustrates how the way in which disability is conceptualized depends on these theoretical models of how disability is understood as a phenomenon. Each model aims to clarify which “problems” are associated with having a disability. In my own country, Norway, and in many other countries, the issue of defining disability is leading to inconsistencies in practices of assisting people with disabilities. One problem facing modern welfare states is that when a specific policy to deal with disability is to be constructed, the phenomenon of disability must first be defined and categorized before it is possible to endow special or general rights on the persons who shall benefit from such measures. Challenges are encountered, as modern welfare states address different arenas to promote the inclusion of people with disabilities. These challenges lie, in part, in the fact that inclusion generates a critical need for concerted and coordinated categorization and definitions of disability. This need creates a tension in that categorizing and defining disability contradicts the need to value individuals for their unique characteristics and to avoid negative connotations about disability. Disability is used in many contexts as a catch-all category for different phenomena and different types of challenges that exist in society. For example,

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in different policies, disability can refer to persons with reduced work capacity or complete inability to work, a person born with an illness, or persons with other conditions that are typically age-related and could affect anyone. Some policies refer to the physical body, whereas others address cognitive capacities. Disability not only refers to naturally occurring conditions but to a diverse range of phenomena society understands as disabilities. In the social scientific literature, a disability is regarded as something that is created and experienced, individually or collectively (Hedlund, 2004, p. 35). Following from this perspective, disability can be constructed and defined in different ways, and different aspects of people’s lives are amassed under the term disability (pathological conditions and illnesses, age-related deterioration, injuries and adjustment problems, social differences, and deviant behavior). Those experiencing a reduction in their adeptness can feel discriminated against. Such discrimination can involve situations that subject the individual to a greater risk of vulnerability, insult, or attack, but also those that restrict access to situations of wellness, a sense of self or collective identity, or a focus on one’s individuality or personal needs (Barton, 1996). In other words, a complex reality is encompassed with the term disability, and this complexity is far from easy to administer categorically in the policy arena. No single theory or perspective can capture disability in a satisfactory way. Analyses of this phenomenon require a broader theoretical framework and approach (Shakespeare, 2006; Solvang, Froestad, & Söder, 2000).

ADMINISTRATIVE DEFINITIONS OF DISABILITY The reality of disability presents a complex and diverse array of phenomena. This complexity is necessary to delineate administrative categories that can enable welfare states to distribute social goods or programs to people with disabilities. Researchers argue that the creation of independent administrative categories to define disability is an expression of modern society’s need for control (e.g., Solvang et al., 2000; Stone, 1985, p. 118). However, the creation of administrative categories to define disability is not just an expression of institutional or social need for control. The construction of categories is also a response to the government’s need to legitimate itself for its citizens in contemporary societies. Administrative categories therefore provide a political answer to problems that arise in society—problems related to the modernization of schools, medical services, shifts in working life or other problems that arise due to traffic accidents, injuries sustained in wars, and so forth. The shaping of administrative categories can also be seen as a response to the need for democratization of citizens, as society requires their participation in shaping social rules. As society becomes more advanced, the need to shape social development and identify persons who find themselves in social risk zones becomes more necessary (Giddens, 1990). Such categories denote what is expected and the social obligations members of society are expected to uphold. Categorization in social policy draws the boundaries for the collective safety net, enabling the distribution of resources according to publicly recognized

UNDERSTANDINGS OF THE DISABILITY CONCEPT

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understandings of social responsibility. Bauman (1997, p. 35) pointed out that through definitions and the shaping of social categories, society attempts to manipulate what is possible. Administrative categories in welfare states make some things possible and simultaneously exclude other possibilities. To receive welfare programs and services, people need to “fit” specified criteria. Thus, through categories, society creates order. According to Bauman (1997), it is important in modern welfare states that these defined social categories are constituted in such a way that they regulate accepted living standards and poverty. In the same matter, the categories and their entrance criteria should not be overprotective or risk humiliating persons who require assistance from the social apparatus. It is at this intersection that most modern welfare states meet their greatest challenges with respect to defining social categories (pp. 35–45). By focusing on the definitions of disability, I hope to provide greater insight into the field within which definitions of disability operate and the implications of these definitions for the way in which people with disabilities are endowed rights and become eligible for “protective” programs. The practical implications of how welfare policy affecting those with disabilities is shaped is important to consider, but it is often a poorly communicated theme in discussions about the welfare of people with disabilities. In this chapter, I am not concerned with describing the evaluative aspects of definitions (i.e., whether some administrative definitions operate “well” and others “poorly”). Categorization of disability traverses a complex and diverse field of social phenomena, within which it is difficult to make “correct” ’ or “incorrect” definitions. It is difficult to find categorizations and definitions that can encompass the plurality of realities that are reflected in the experience of disability. Instead, I focus on the practical implications and consequences of definitional processes, with particular emphasis on which criteria or circumstances are emphasized when disability is defined and how this translates into the way help is distributed. The definitions that are used are derived from diverse understandings of disability, four of which are reviewed in this chapter.

THE DIFFERENT UNDERSTANDINGS OF DISABILITY Definitions of disability vary according to the conceptual framework or understanding is being applied. Definitions of disability can be constructed in relation to several basic interpretations or understandings of the phenomenon. As Table 2.1 shows, definitions of disability involve different interpretations and draw attention to different aspects of disability. Thus, instruments and methods of assisting a person with disability are likely to be based on different underlying interpretations of what constitutes the “problem” of a disability. Each interpretive model or understanding approaches disability from a unique viewpoint. From this viewpoint, different limitations and facts are regarded as appropriate when defining disability. Different models assume different ideological principles for how welfare for persons with disabilities can be achieved.

Table 2.1

Different Understandings of Disability Medical or Epidemiological Model

Social Model

Approach to disability

Remove or “repair” individual limitations caused by medical illness or diseases

Remove social barriers created to repress and discriminate a person with a disability

Response to the “problem”

Compensation and measures directed at rehabilitation of the individual through the social security system, labor market measures, or social service arrangements

Limitations

Too much focus on medical or pathological deviations, individual weaknesses, or inadequacies. Problems according to medical criteria, description of ability to function, and medicalization of social problems is common

Source: Adapted from Hvinden (2000).

Relative Model

Reduce a gap between individual resources and the demand for ability in a context Combination of measures Antidiscrimination legislation; use to reduce the gap of universal design that makes the between demands and environment accessible for “all” (Christophersen, 2002). Reorganize preconditions; society so it fits people with disability appropriation of funds to the individual or (consciousness-raising campaigns, environment to reduce “citizen salary,” minimum base the gap income amount) General and too abstract Less appropriate for disabilities to be effective when caused by “social problems” or psychiatric or cognitive impairments. concrete situations of If fully carried out, demands the total gaps and adjustments are reorganization of all areas of society, to be made. Difficult to implement generating massive expenditures

Cultural Minority Model Remove repression, invisibility, pressure to conform for people with disability being different in ability Recognize or celebrate difference and respect for cultural diversity and the right to self-defined norms and living conditions that differ from the dominant majority Limited practical relevance for different groups of persons with a disability, mainly applicable for people using sign language; raises questions about employing segregation and defines disability as a “fate” or choice of identity


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The Medical Model The medical model interprets disability according to an epidemiological standpoint (Söder, 1991). It regards disability more or less as a personal problem, directly caused by illness, injury, or other forms of health issues, that are assumed to be improved through medical intervention in the form of treatment methods, medicine, and therapy or rehabilitation measures. Disability is associated with diagnoses and pathological facts, therefore limitations can arise due to illness or pathological abnormalities residing within the individual. Such a construction and understanding of disability emphasizes the problems associated with using confirmed medical conditions as a basis on which to describe the impairments an individual suffers from and to determine how their situation can be compensated for or improved. Similar to the way in which epidemics are approached, the problem of disability is to be contained and harm is to be reduced. Disability represents a weakened state of health or an injury that reduces a person’s ability to function. Such impairments can be compensated for through access to financial support measures or services. The effect of impairments can possibly be made less significant through special training programs or aids in such that remaining functions and abilities are maximized. It is assumed that through different test programs, individuals can hone their abilities to identify and train various capacities and resources and in this way subsequently protect themselves against impairments or obstacles resulting from their disability. This interpretation of disability is criticized heavily for focusing on the individual and the problem rather than emphasizing the possibilities and predisposition of the person with the disability. It is also criticized for assuming a medical preevaluation or definitional power over the problems related to disability. Shortcomings in the way that society has adapted for the person with the disability and whether that individual has the opportunity to participate in various activities are not present within the medical definition of disability. Furthermore, the model is criticized for understanding disability according to medically accepted factors and definitional procedures followed by medical science. Other types of impairments that are more or less difficult to clarify in medical terms are often excluded from medical definitions. For example, it is difficult to define drug addicts, alcoholics, and persons who deviate from the general population within the disability category even if it is clear that these individuals are impeded by their surroundings. As Lindqvist (2001) asserted, the medical model results in a “medicalization” of social problems and living standards. A person who is disabled and has limited financial means will only be granted access to welfare benefits when he or she receives a medical diagnosis. Even if poverty and poor living conditions trigger welfare measures and support programs, these conditions do not make it legitimate to categorize disability according to the medical model.

The Social Model The social model presents disability provides a counterpoint to the medical understanding of disability. Hence the name—social model—emphasizes the

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social and not the medical explanation for why the phenomenon of disability comes into being. According to the social model, disability is not something that is given to people by nature; it is constructed and created through human interaction. “Constructions of disability” in its broadest meaning refers to how we experience the world through what we, as competent and communicative actors, mediate for one another. The world is created actively and the accounts we provide are also in the world. These phenomena are constructed as they are mediated in people’s ideas, representations, and definitions of the situation. W. I. Thomas’ theorem presents this idea as “if men define situations as real, they are real ‘in their consequences’ ” (Thomas & Thomas 1928, p. 572). According to this perspective, situations and the accounts we provide for situations or phenomena are embellished with a symbolic resonance of how we understand the world. Merton (1968) argues this and when things and phenomena are recognized as “truths” about the world, they will quickly be seen as truths. Blumer (1956) purported that which is recognized and described is a construction of reality imbued with its own ability to be obvious and a matter of course. If we apply this knowledge to accounts and definitions of disability, we see that there can be different symbolic interpretations involved in accounts. Disability is therefore not an individual quality but arises as a consequence of man-made conditions and a society that is poorly adapted and organized. The fact that people become disabled is a by-product of the social environment resulting from a lack of response to the need to make adaptations, including adjustments to the physical environment (building design, transportation system, etc.). The social model constructs the disability itself as a result of poor adaptation and organization on the part of society, that is, social organization that excludes or makes it impossible for persons with a disability to participate. Disability is not located with the individual but with the lack of adaptations made within the social and physical environment. Several countries that have introduced antidiscrimination laws to apply to disability have been inspired by the social model of disability. This model has also strongly influenced the use of so-called universal design for organizing society (Christophersen, 2002), wherein buildings, public gathering areas, educational and teaching processes, informational materials, and any resources are developed based on the notion that people participate in society in different ways. When something is universally designed, it is adapted in such a way that all can participate, regardless of an individual’s capabilities or inhibitions. The social model constructs disability from a standpoint that includes, at least implicitly, a critique of the existing social ideals of youth, beauty, perfect bodies, strength, and usefulness. Very few people can live up to these ideals, which are most apparent in advertising, modern marketing, and the fashion and cosmetics industries. In this way, the social model paves the way for other social ideals and consciousness raising with respect to human diversity and variation. The social model opposes the idea that disability is something that can be “repaired” or improved through rehabilitation measures or intervention by medical or other professional fields. According to the social understanding, such programs or measures involve segregating persons with a disability from


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participating in general social life. Taken to its extreme, the social model suggests nothing less than a total reorganization and reshaping of society such that a person with a disability can participate on the same terms as those who are not disabled. In this way, it is a utopian model that demands immense efforts—not least of which include social-economic efforts. Representations of disability that are based on the social model are criticized for focusing too much on persons with physical disabilities and giving too little attention to experiences related to illness, pain, or physical limitations (see Bury, 1996; Shakespeare, 2001; Thomas, 1999; Wendel, 1996). The social model has also been criticized for underemphasizing problems related to medical or clinical conditions, such as blindness and intellectual disabilities (Shakespeare, 2006; Tøssebro & Kittelsaa, 2004). However, the social model does not define what a disability is, but directs attention to the consequences of disability. The model provides no clear answers to how a disability should be defined or which rights are necessary to equalize the experience of a person with disability and a person without a disability. First and foremost, this representation is concerned with identifying and opposing what are regarded as man-made barriers for those with reduced capacities. Embedded in this model is an assumption that society must provide instruments to reshape social barriers and enable people with disabilities to participate. Measures that prevent accidents and poor health in working life are examples of measures that break down barriers, as are measures aimed at prohibiting discrimination of a person with disability in the workplace, which are inspired by the social model. In summary, the social model primarily focuses on disability as a result of man-made barriers. Here, this is interpreted to be about welfare measures that aim to provide rights to a person with disability such that thresholds are reduced and the person is given the opportunity to participate.

The Relative Model The relative model presents disability as a combination of medical and socially created phenomena. This model can be viewed as a compromise between the medical model and the social model. According to the relative model, a disability is something that arises due to a gap between presumed abilities (capacities, competencies, or resources) and individual premises. Disability arises because there is disharmony between demands to engage in some way and the opportunities of meeting these demands. Thus, disability cannot be explained by medical, biological, or developmental factors alone but by the interaction between the individual’s ideals and the demands placed on engaging with or confronting society or the physical environment. Rather than dichotomizing the solutions to disability as either individually directed or environmentally directed, the relative model looks to bridge the gap through flexibility and by recognizing a range of instruments that can be employed to resolve the dilemmas faced by people with a disability. The model presents disability in such a way that it provides a reasonable representation of what people usually recognize as obstacles for people with various impairments—mental, physical, or social—to participate on equal terms in social life.

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One criticism of the relative model is that it is too abstract and general to play any practical role in shaping welfare policy for people with disabilities. In the worst case, the relative model is so ambiguous that it dissolves responsibility for developing policies that secure the welfare of a person with a disability. Specifically, the model does not provide or provides too few concrete principles and guidelines that can contribute to the definition of disability. For example, the relative model provides little clarity about who should be defined as occupationally disabled in relation to working life and therefore makes it difficult to determine who is entitled to special rights. At the other extreme, however, the model fails to identify which factors in the environment need to be adjusted for a person with a disability to participate on equal terms with others. In this way, the model fails to provide clear answers about the definitions that should be used to endow a person with a disability rights. Importantly, environmental demands and individual predispositions do not necessarily conform to a one-to-one relationship, as the relative model suggests. It is not necessarily the case that where environmental adjustments have been made in relation to a single individual’s disposition that these accommodations will provide the same function for others or for the same individual in other situations. One person can be disabled in relation to one social order, but not in others. The person can be limited in one context, and at the same time possess potential and resources that cannot be realized until society is reorganized. These resources may become evident and possibly activated if a different social order was found. To be activated, they may require a different set of premises than those embedded in current social expectations and the existing set of dominant social norms. A social climate with different values, norms, and priorities could make it possible for a human diversity that is currently not apparent due to the way society is organized. The simple relative model does not take this level of context into account.

The Cultural Minority Model From the cultural minority standpoint, focus is directed to the experiences of the person with a disability that have different practices or preferences than those that are typical for the majority of people in society and who there with are discriminated against. Those who have not developed their senses or who do not use their senses in the same way as others (e.g., those who do not use hearing or audiovisual means to communicate) are discriminated against by a majority who prefer this form of communication. Thus, the cultural minority model does not present disability as something that is imperfect or limiting in life. It is not concerned with counting or confirming imperfections in capacity or human functioning. The cultural minority model is consistent with the way in which the deaf community describes its own definition of disability (Breivik, 2000, 2001; Davis, 1995; Harris, 1995). Representatives of the deaf community feel that they are a cultural minority, disabled because sign language is uncommon in society at large. They argue that deaf people should be compared with other language or cultural minorities. Being deaf means having one’s own language, a set of values, and shared perspectives because people with hearing


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impairments do not have access to or want to have access to the norms and values that apply for people that are the hearing in society. According to this cultural minority model, it is unnecessary to classify the disabling quality in the individual according to a medical description. People who are hearing impaired also oppose the representation of disability as something that should be repaired or fixed. Accordingly, if efforts to improve the situation of those with disabilities should depart from the groups’ own experiences and definitions of disability, then assistance could be regarded as destructive. Some researchers within the field of disability (Batterbury, Ladd, & Gulliver, 2007; Ladd, 1991) have stated that the integration of people with hearing impairment into society according to premises based on the hearing majority would be regarded as an effacement of the cultural identity of this population. However, should everyone learn sign language, integration would occur according to the deaf community’s premises, and such effacement would not take place. The cultural minority model is clearly evident in the debate on whether deaf children should be medically treated to remove their impairment (i.e., cochlear implant). The deaf community strongly rejects such a technical or medical intervention as an instrument against deafness. This community prefers to compare itself with other cultural minorities (Batterbury et al., 2007), such as the Saami people (first-nation people of Norway) and gay, lesbian, and bisexual people, and identifies less with people who have medical or physical impairments. Representatives argue that they are discriminated against by the surrounding society that practices hearing norms, values, and means of communicating that are uncommon among people with a hearing impairment. The surrounding society attempts to assimilate a person with a hearing impairment into a hearing society rather than providing opportunities for this person to preserve his or her own identity, culture, and language. The cultural model may be limited by the fact that it assumes that other subgroups of persons with disabilities experience the same sense of belonging to a community, common norms, and values as that found in the deaf community. Whether or not this is true and whether all people with hearing impairments experience the world in the same way as those with access to sign language remains unclear.

THE POINT OF INTERSECTION FOR DEFINITIONS OF DISABILITY IN NORWAY From a social policy perspective, disability must be categorized and defined before one can determine which people have a right to welfare support by virtue of having a disability. Thus, in practice, different administrations can operate in completely different ways toward the same population. The same individual can be categorized and defined differently for the same problems by different administrations. Further, different actors evaluate and determine disability according to different underlying understandings of disability and thereby can act in an uncoordinated way. Even within one administration, actors operate according to different underlying understandings of disability, and as a result, the “problem” can be defined and addressed in diverse ways.

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These different categorizations and definitions have implications for how people with disabilities are endowed rights and become eligible for protective programs. For instance, some groups of people will become preapproved for welfare support and some conditions or symptoms of disability will more easily gain access to welfare support than others. However, the use of different definitions of disability also implies that the same person can risk being met with different responses and expectations depending on which administration is responsible for decision making. In some cases, a person will have the right to public assistance, help, or support, but in other cases, the same person will be refused assistance. In addition to the confusion this can create for those seeking support, the use of differing definitions of disability increases the need for coordination and organization of the welfare apparatus. Definitions of disability reflect the underlying understandings of the phenomenon itself. These understandings determine the operationalization of disability, the facts that are collected and evaluated in the assessment process, and the responses that are considered appropriate. Understandings can generate different conceptions of who has an acute or chronic need for help and who does not. They can also generate different conceptions of responsibility for one’s own situation and how worthy a person is of being classified as disabled. Some problems are regarded as worthy enough, whereas others are excluded from the disability category. The extent to which the worthiness criterion is employed when disability is defined determines the extent to which some groups of people or “symptoms” of disability are included or excluded. For example, if a strict and definitive criterion must be present to delineate disability, it is easier to regulate and determine who shall be entitled to support and who shall be rejected. Over two decades ago, Stone (1985) argued that when disability becomes an administrative category, the modern welfare state can regulate access and the production of social goods. Through clear definitions and criteria for categorizing disabilities, an important welfare-political dilemma is resolved. Stone noted that the purpose of defining specific administrative categories for disability is to make it clear which needs, conditions, and justifications should be acceptable as exemptions to the common expectation that citizens will be self-supporting. By developing more or less detailed criteria and procedures for how evaluations of disability shall be conducted, persons must then qualify themselves for support measures through administrative procedures. Social goods are not distributed to each and every one but via administrations that ensure that the right procedures and definitions are used. When discretion is used to judge disability, this opens the doors to flexible and pragmatic administrative definitions and categorizations. The imposition of more predetermined criteria and details about who and what shall be included as disability leads to more rigid and fixed definitions and categorizations. Some welfare support for those with disabilities in Norway is economically oriented (i.e., income support or provision/payment for special support services), whereas other forms of support are directed toward access to services and the possibility of participating in activities. It is also common to find mixed forms of support that address both financial concerns, activities, and the provision of services. For example, a basic benefit is granted if


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the disability involves significant extra expenses. Although based on financial considerations, the aim of this benefit is to stimulate the opportunity for a person with a disability to lead a more independent life. In Norway, entitlement to financial support tends to be determined and defined in relation to more standardized and detailed definitions of disability than those applied to nonfinancial services. Assessments and evaluations of disability are often made according to strict administrative procedures and expert evaluations. Generally, the administrative steering and regulation of disability for the purpose of income distribution is more heavily reliant on medical documentation and official confirmation. Although all people with disabilities may apply, some financial supports and services are automatically distributed to those with particular conditions or circumstances associated with specific disabilities or certain subgroups of persons with a disability. For example, in Norway, those with congenital deafness are automatically recognized as requiring a sign-language interpreter, which involves extraordinary expenses. These individuals receive a cash benefit without any additional documentation or justification. In contrast, nonfinancial services are usually defined using more discretionary criteria and definitions. In some cases, it is enough that individuals themselves feel they are disabled and that they have knowledge of and insight into their own situations. This is particularly true of definitions of different help and service programs for people with a disability that aim to ensure participation through public regulation and rules. In the Working Environment Act of Norway (2006), the Planning and Building Act of Norway (1985, revised 2005), and the Norwegian Employment Act (2004), people with disabilities are entitled to accessible workplaces, buildings, and employment services. These programs often operate with diffuse categorizations of what is to be regarded as disability. These legal acts seek to fully integrate people with disabilities into society. They have been constructed with the idea in mind that it is possible to normalize situations and break down socially created barriers for people with disabilities by entitling them to particular legal rights. These measures do not define disability explicitly; rather, the definition is implicit. The right to occupational rehabilitation for people with disabilities is one example. People can be referred to occupational rehabilitation for various reasons, one of which can be disability. The occupation rehabilitation program will seek to improve the workability of a person, if this is found to be necessary and appropriate (Ford, 1994). Welfare measures in Norway are organized according to the idea that they shall operate in an overlapping manner with respect to securing the total welfare of persons with disability. However, this situation creates another set of definitions about who has a disability and how they will be responsible for meeting their needs. As the limits of one benefit or program are reached (i.e., due to definitional criteria based on age, time limits, location, or due to changing needs/circumstances of the person), another benefit or program should take over. One example of this is rehabilitation allowance for occupational support2 during long sick absences from work. If a person receives economic compensation for loss of income during a period of treatment that is focused on enabling that person to engage in gainful employment, the

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person will receive an occupational allowance once the treatment period is over if he or she is still in need of assistance to regain work capacity. Financial benefits for rehabilitation can only be paid out for a maximum of one year, and thereafter a person must receive an occupational allowance, thus redefining the nature of the disability and determining the assistance he or she can receive. Welfare measures can overlap in other ways. For instance, the same individual can receive support and benefits from different welfare programs, administered through different public offices and by different civil servants, but directed at the same target group. As an example, a person can receive a basic benefit from the social security office to help cover exceptional costs related to an illness or to be able to live an active life, while continuing to receive help in the form of assistance in the home or user-led assistance. Userled assistance programs began in 2000, through the municipal social service programs. This program represents an alternative way of organizing public services for a person with a severe disability to support daily activities. Most benefits and services are regulated by the Norwegian Labor and Welfare Service (NAV). The NAV reform, passed by Parliament in 2006, was considered to be one of the largest administrative reforms in Norwegian welfare policy in recent times. From 2006, various public (state) administrations were combined into this single body, creating a close interaction between different welfare services. The NAV has a sharper focus on people with special needs in relation to the labor market and other challenging life situations and now has the authority to make decisions about most benefit programs and services to people with disabilities in Norway. However, the right to one benefit still does not automatically entitle one to others. Furthermore, the municipal services can choose to reduce the extent of help they provided should they feel that needs are being adequately met through other welfare measures. The different public welfare agencies can but will not necessarily check if other welfare measures are more convenient and suitable for the person with a disability. In most cases, it is assumed that services and definitions should collectively provide overlapping welfare support for all individuals who are defined as having a disability. Thus, in Norway, the definition of disability and the assessment methods that are applied appear to be directed by the focus and purpose of welfare program. Conversely, the definition of disability is determined by the nature of welfare programs and the artificial constraints placed around those programs.

CONCLUSION Recent research on welfare policy and disability has shown that social policy and definitions of disability in many countries are dominated by the medical model and its associated understanding of disability (Bolderson, 2002; Mabbett, 2004; van Oorschoot, 2001). This dominance is also present in many Norwegian disability programs, but does not apply universally across all areas that aim to give rights to people with disabilities in Norway. Today the medical understanding of disability must compete with the other models


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and understandings of disability that have been described in this chapter. In Norway, the social model is beginning to construct the rights of those with disabilities through several programs, particularly antidiscrimination measures and, more recently, services such as BPA and FA.3 The medical model of disability no longer operates alone or excludes the use of alternative understandings of disability (Hedlund, 2000; Hvinden, 2002). This chapter has shown how the treatment people with disabilities receive and the services they can access depend heavily on the definition of disability that underpins the decision-making process. This definition influences the eligibility criteria, the assessment processes that are applied, and the intensity of service provided. It will determine how people are viewed and the extent to which they are fully supported to achieve their goals in life. Thus, definitions of disability are more than philosophical issues to be debated—they are critical features of any social policy system that must not be applied without reflection on the implications.

NOTES 1. Welfare state refers to a country where the state (government) operates as the main provider of welfare for the citizens of the country. Esping-Andersen (1990, p. 23) defined it as “an active force in ordering social relations.” 2. In Norwegian: Stønad til yrkesmessig attføring eller rehabiliteringspenger. 3. The Capabilities Assistant Program (personal assistance provided to people who are severely physically disabled and having problems performing working tasks).

REFERENCES Barton, L. (1996). Sociology and disability: Some emering issues. In Disability & Society (pp. 3–18). Essex: Addison Wesley Longman. Batterbury, S. C. E., Ladd, P., & Gulliver, M. (2007). Sign language peoples as indigenous minorities: Implications for research and policy. Environment & Planning A, 39(12), 2899–2915. Bauman, Z. (1997). Postmodernity and its discontents. Cambridge: Polity Press. Blumer, H. (1956). Sociological Analysis and the “variable.” American Sociological Review, 21, 683–690. Bolderson, H. M. D. (2002). Definitions of disability in Europe: A comparative Analysis. London. Social security & social integration, European Commission employment and social affairs. Brussel. Breivik, J.-K. (2000). Deaf—disabled or cultural minority? [Døve—funksjonshemmede eller kulturell minoritet?]. Akribe, Oslo. Breivik, J.-K. (2001). Deaf identities in the making metaphors and narratives in translocal lives. Unpublished monograph, Department of Social Anthropology, Oslo. Bury, M. (1996). A comment of the ICIDH-2. Disability & Society, 15(7), 1073–1077. Christophersen, J. (2002). Universal design: 17 ways of thinking and teaching. In J. Christophersen (Ed.), Universal design. Oslo: Husbanken. Davis, L. J. (1995). Enforcing normality. In L. J. Davis (Ed.), Disability, deafness and the body. London: Verso. Esping-Andersen, G. (1990). The three worlds of welfare capitalism. Cambridge/Oxford Polity: Blackwell.

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Ford, M. (1994). Vocational occupational rehabilitation—back to work? A follow up study [Attføring til arbeid?: en oppfølgingsundersøkelse på yrkesmessig attføring]. Oslo: Ministry of Health and Social Issues [Sosial- og helsedepartementet]. Giddens, A. (1990). The consequences of modernity. Cambridge: Polity Press. Harris, J. (1995). The cultural meaning of deafness: Language, identity and power relations. Aldershot: Avebury. Hedlund, M. (2000). Disability as a phenomenon: A discourse of social and biological understanding. Disability & Society, 15(5), 765–780. Hedlund, M. (2004). Shaping justice: Defining the disability benifit category in Swedish social policy. Department of Sociology, Lund University, Lund. Hvinden, B. (2002). Convergence in disability politics in Western Europe? Paper presented at the COST A 15 Reforming Protection System in Europe, Welfare Reform for the 21st Centrury. Ladd, P. (1991). Making plans for Nigel: The erosion of identity by mainstreaming. In G. Montgomery (Ed.), The integration and disintegration of deaf in society. Glasgow: Scottish Workshop. Lindqvist, R. (2001). Setting limits—organization and reforms in occupational rehabilitation [Att sätta gränser—Organisationer och reformer i arbetsrehabiliteringen] Umeå: Borèa. Mabbett, D. (2004). European disability policies: II Country trends 1970–2002. Journal of Social Policy, 33(4), 670–672. Merton, R. K. (1968). Social theory and social structure. New York: Free Press. Norwegian Employment Act (2004). Law no 76, dated December 10, 2004 (valid from June 1, 2005). Law about labor marked and employment services. Retrived from http://www.lovdata.no/all/hl-20041210-076.html. Planning and Building Act of Norway (1985, revised 2005). Law no 77, dated June 14, 1985 (valid from July 1, 1986) about plans and buildings. Retrived from http://www.lovdata.no/all/nl-19850614-077.html. Shakespeare, T. (2001). The social model of disability: An outdated ideology? In Exploring theories and expanding methodologies: Where we are and where we need to go, 2, 9–28. Shakespeare, T. (2006). Disability rights and wrongs. London: Routledge. Söder, M. (1991). Disability as a social construct—the labelling approach revisted. European Journal of Special Need Education, 2(4), 117–129. Solvang, P., Froestad, J., & Söder, M. (2000). Disability, politics and society [Funksjonshemning, politikk og samfunn]. Oslo: Gyldendal akademisk. Stone, D. A. (1985). The disabled state. London: Macmillan. Thomas, C. (1999). Female forms—experiencing and understanding disability. Buckinghamshire: Open University Press. Thomas, W. I., and Thomas, D. S. (1928). The child in America: Behavior problems and programs. New York: Knopf. Tøssebro, J., & Kittelsaa, A. (2004). Exploring the living conditions of disabled people. Lund: Studentlitteratur. van Oorschoot, W. H. B. (2001). Disability policies in European countries. The Hague: Kluwer Law International. Wendel, S. (1996). The rejected body—feminist philosophical reflection on disability. New York: Routledge. Working Environment Act of Norway (2006). Law no 62, dated June 17, 2005 (valid from Janury 1, 2006) about working environment, working hours and employment protection etc. Retrived February 15, 2008, from http://www.lovdata. no/all/hl-20050617-062.html.

CHAPTER 3

Disability Harms: Exploring Internalized Ableism Fiona Kumari Campbell

Internalized oppression is not the cause of our mistreatment; it is the result of our mistreatment. It would not exist without the real external oppression that forms the social climate in which we exist. Once oppression has been internalized, little force is needed to keep us submissive. We harbour inside ourselves the pain and the memories, the fears and the confusions, the negative selfimages and the low expectations, turning them into weapons with which to re-injure ourselves, every day of our lives. (Marks, 1999, p. 25)

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lthough there are many debates in disability studies and the disability services fields, most people would agree with the proposition that disabled people1 experience various degrees of subordinated and diminished lives through economic, social, legal, religious, and cultural discrimination. These problems were recently formally recognized by the United Nations in the form of the UN Convention on the Rights of Persons with Disabilities, which binds member nations who become signatories. In light of this recognition, it is important to pause and think about the nature of harm that disabled people experience and the very concept of harm. For instance, is it the impairment itself that causes the harm? If so, we should focus on reducing or, indeed, eliminating the impairment, which is a common perspective. Such a view interprets disability as harmful in and of itself. In contrast, there is a view among some disabled people that although impairments at times cause inconvenience, tiredness, and even pain, the primary source of harm is external to the person, situated in the realm of belief. From the moment a child is born, he or she emerges into a world where he or she receives messages that to be disabled is to be less than, a world where disability may be tolerated but in the final instance, is inherently negative.

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We are all, regardless of our status, shaped and formed by the politics of ableism. This chapter is about theory—it is an attempt to theorize about the way disabled people live with ableism. One assumption underpinning the argument is that ableism is essentially harmful, and instead of providing solace to disabled people, it actually involves practices and attitudes that induce other forms of impairment and injury. In this chapter, the experience of disability is related to that of race by exploring the concept of internalized racism, its usage in critical race theory (CRT), and its possible application to critical disability studies. First, CRT is described; second, conceptual framework of ableism is provided, and finally, internalized racism and its connection to the phenomena of internalized ableism are discussed.

CRITICAL RACE THEORY CRT has not only brought into question the notion of race as a permanent and abiding classification system, it has also made a contribution to the notion of race as a practice that is constantly negotiating, shaping, and forming the individual,2 resulting in internalized racism (Frankenberg, 1993; McClintock, 1995). CRT considers racism not as aberrant but as a natural part of Western life. Expanding on this perception, Delgado and Stefancic (2000) declared: Because racism is an ingrained feature of our landscape, it looks ordinary and natural to persons in the culture. Formal equal opportunity—rules and laws that insists in treating blacks and whites (for example) alike—can thus remedy only the more extreme and shocking forms of injustice. . . . It can do little about the business-as-usual forms of racism that people of color confront everyday and that account for much misery, alienation, and despair. (p. xvi)

Applying similar reasoning to the state of disablement, the business-asusual forms of ableism are so absorbed into the function of Western societies that ableism as a site of social theorization (even within critical disability studies) represents the last frontier of inquiry. Disability studies is still preoccupied with debating the distinctions between impairment and disability. Although there is recognition that the term disability can be both culturally and economically constructed, the state of impairment remains undertheorized (see Corker, 2001, and Tremain, 2005, for notable exceptions). Cultural practices of shaping bodies can affect the etiology of “typical” human functioning. The ranking of bodies occurs through dividing and partitioning according to clear-cut descriptors of race, gender, caste, and disability (see Grosz, 1994; Mitchell & Snyder, 2003; Stubblefield, 2007). Gordon and Rosenblum (2001) suggested that similar approaches to disability as have been applied to race may lead to new and productive sites of engagement. They argued that there are likenesses and distinctions in the ways disabled people and other stigmatized groups are named, enumerated, disenumerated, partitioned, and denied attributes valued in the culture. One example of this process is the enshrinement in Indian law of the “backward” class,

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which refers to a specific segment of the population grouped by social order and location. Backwardness is rendered visible through intelligence quotient scales and categorizations such as subnormalcy and retardation (Scheerenberger, 1983). Certain theories of development have described whole nations of the “third world” as backward and undevelopable (Baster, 1954). CRT draws on the notion of interest convergence, a concept that describes situations where white people with power endure or foster black advancements to the extent that these advancements promote white interests (Delgado & Stefancic, 2000). Interest convergence has sometimes resulted in unlikely bedfellows (i.e., groups in the community forming alliances where normally their interests might be different or even conflicting). Consider the alliance between the Roman Catholic Church and World Islamic Council at the 1994 UN International Conference on Population and Development (Moffett, 1994). A critical disability studies perspective invites us to explore the limits of liberal tolerance of disability, interest convergence and the points of departure away from the interests of ableism.

What Is Ableism? In the social sciences and disability studies fields, literature has concentrated on the practices and production of disablism, specifically examining those attitudes and barriers contributing to the subordination of people with disabilities in liberal society (as examples, Bolderson, 1991; Goggin & Newell, 2000; Johnson & Moxon, 1998; Stainton, 1994). Disablism is a set of assumptions and practices promoting the differential or unequal treatment of people because of actual or presumed disabilities. Although diverse, the strategies adopted to facilitate emancipatory social change essentially relate to (re)forming negative attitudes, assimilating people with disabilities into normative civil society, and providing compensatory initiatives and safety nets in cases of enduring vulnerability (e.g., pension plans and public residential institutions). Some disabled people have refused the assimilationist imperative by resisting any mitigation or reduction of their impairment and have spoken in an alternative way about disability that displaces the view of disability as catastrophic (through new disability histories, cultures, and the arts). However, significant numbers of disabled people still aspire to the adoption of culturally valued roles to blend into and assimilate to society. In these cases, the site of social change has been the intermediate level of function, structure, and institution in civil society and shifting values in the cultural arena. For some, the term ableism has been used interchangeably with the term disablism. However, these two words render radically different understandings of the status of disability relative to the norm. Disablism relates to the production of disability and fits well into a socially constructed understanding of disability, whereas ableism can be associated with the production of ableness, the perfect body and, by default, the implication that disability is the loss of ableness. Hahn (1986) testified that there is a close link between

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the attitude of paternalism, the subordination of disabled people, and the interests of ableism: Paternalism enables the dominant elements of a society to express profound and sincere sympathy for the members of a minority group while, at the same time, keeping them in a position of social and economic subordination. It has allowed the non-disabled to act as the protectors, guides, leaders, role models, and intermediates for disabled individuals who, like children, are often assumed to be helpless, dependent, asexual, economically unproductive, physically limited, emotional immature, and acceptable only when they are unobtrusive. (p. 130)

Jones’ (1972) seminal work on racism argued that race-based power relations are galvanized “with the intentional or unintentional support of the entire culture” (p. 172). In this regard, Delgado (2000) claimed that the situation of members of racial minorities is akin to persons with physical impairment. Supporting this conclusion, Delgado cited the work of Oliver Cromwell Cox (1948), who claimed that a rebuff due to one’s skin color puts [the victim] in very much the situation of the very ugly person or one suffering from a loathsome disease. The suffering . . . may be aggravated by a consciousness of incurability and even blameworthiness, a self-reproaching which tends to leave the individual still more aware of his [sic] loneliness and unwantedness.” (cited in Delgado, 2000, p. 132)

As a conceptual tool, ableism goes beyond procedures, structure, institutions, and values of civil society and situates itself clearly in the arena of histories of knowledge. Ableism is embedded deeply and subliminally within culture. Many people are familiar with the concepts of sexism and racism, denoting negative differentiation on the basis of sex or racial origin; but ableism often presents as a strange and unfamiliar concept. At the outset, it is important to refute a rigid understanding of ableism. The intention here is not to propose ableism as another explanatory grand narrative, a universalized and systematized conception of disability oppression. Rather, the approach is to highlight a convergence of networks of association that produce exclusionary categories and ontologies (i.e., ways of being human). I contend that focusing on the study of ableism instead of disability/disablement may produce different research questions and sites of study. Although the stakeholders in the government of disability may change, other traditions, such as the use of regimes of law and medicine, will remain constant. Law will continue to play a powerful role in defining what is a legal and therefore recognized disability, and doctors will continue to have the authorizing power to certify not just disablement but often an individuals’ functional capacity. Campbell (2001) maintained that ableism is “a network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human. Disability is cast as a diminished state of being human” (p. 44).3 This bodily and mental standard appears to be a normal part of what it means to be human. In reality, the normative standard is always in a state of

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flux. An example is the change in the notion of beauty and ideal weight requirements for admission into the Miss America beauty competition (Cohen, Wilk, & Stoeltje, 1996; Rodin, 1993). Commenting on a recent dictionary definition of ableism as a kind of discrimination in favour of able-bodied people, Linton (1998) noted that this definition also “includes the idea that a person’s abilities or characteristics are determined by disability or that people with disabilities as a group are inferior to non-disabled people” (p. 9). Linton pointed out that unlike discourses of racism and sexism, there is little consensus among the general public (and scholars) as to what practices and behaviors constitute ableism. The nuances of ableism close off certain aspects of the imagination. As Butler (1997a) put it: “The operation of foreclosure is tacitly referenced in those instances in which we ask: what must remain unspeakable for the contemporary regimes of discourse to continue to exercise power?” (p. 139). Butler’s (1997a) comments are complex and dense, let’s pause to unpack them. Imagination is integral to human growth. To imagine is to consider desire, to dream of possibilities, to see life differently. Sometimes it is not possible to imagine: Maybe there is an overwhelming sense of gloom or maybe the consequences of imagining differently would result in being ridiculed, pathologized, or at best ignored. Butler made the point that for systems of thinking to be maintained, certain ways of imagining need to remain unspeakable and unspoken. In some countries, this is achievable due to the actual absence of words in the vocabulary to describe a certain kind of difference. Is it possible to imagine disability outside of the context of tragedy or catastrophe? Compulsory ableness shapes our imagination as to the forms of “perfected” bodies and the kinds of mental and emotional capacities that are valued. A chief feature of an ableist viewpoint is a belief that impairment (irrespective of type) is inherently negative and should, if the opportunity presents itself, be ameliorated, cured or indeed eliminated. What remains unspeakable are imaginations of impairment as an animating, affirmative modality of subjectivity. Can we imagine great beauty in disability or are we affronted by such a thought?

INTERNALIZATION Instead of embracing disability at the level of beingness (i.e., as an intrinsic part of the person’s self), the processes of ableism, like those of racism, induce an internalization or self-loathing which devalues disablement. Unspeakable silences exist regarding the study of certain aspects of race. Pyke and Dang (2003) noted there is an intellectual taboo/fear surrounding the study of internalized racism, presumably because attention to internalized racism may undermine the political potency of the African American rights movement and eclipse liberalism’s black success stories. What, then, about the hidden stories of the can-do generation of successful, assimilated professionals with disability? Do people with disability experience a sense of inadequacy dissonant to their success? A lack of focus on the costs of ableism has led to a shortage of research around the themes of suicide, drug and alcohol use, and

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additional mental health stressors among “successful” disabled people. One might be led to believe that the pathologization of the disability “problem” ’ has, in contrast to matters of race, meant an acceptance and awareness of internalized ableism. The pathologization of disability has meant that therapy predominantly concentrates on normalization and is not necessarily directed to attending to the harms of ableism (e.g., living with prejudice). Kovel (1970) presented a bleak but pertinent testimony of the impact of internalized racism, noting that the “accumulation of negative images . . . presents [racial minorities] with one massive and destructive choice: either to hate one’s self, as culture so systematically demands, or to have no self at all, to be nothing” (p. 195). Rosenwasser (2000), writing in the context of antiSemitism, defined what she termed internalized oppression as an involuntary reaction to oppression which originates outside one’s group and which results in group members loathing themselves, disliking others in their group, and blaming themselves for the oppression—rather than realizing that these beliefs are constructed in them by oppressive socio-economic political systems. (p. 1)

The key ingredients of CRT are negative representations of human beingness (perverted sexualities, ambiguous bodies and skins) which continually shape an individual’s sense of self and regulate behaviors. CRT’s notion of internalized racism indicates a process whereby people of color absorb and internalize aspects of racism (Akbar, 1996; Freire, 1970; Harvey, 1995). The nature of differentially situated realities means that there will be many different relationships with internalized racism. For instance, Watts-Jones (2002) argued that for people of European Christian descent, internalized racism can empower, if not privilege, feelings of superiority. “It is an experience of selfaggrandizement on an individual, socio-cultural and institutional level” (p. 592), whereas for colored people, internalized racism induces self-mortification and estrangement. Internalized racism compels people of color to adopt strategies of color disavowal in that “enjoyment or privileges we accrue are by virtue of abandoning our identity to approximate that of the extolled group. There is no entitlement or sense of entitlement” (pp. 592–593). Similarly the lack of discussion about ableism, and internalized ableism in particular, means that the casting of disability into the background through a reemphasis on personhood (e.g., person-first language)—means that disability is often erased or disavowed. In effect this nonrecognition of ableism suggests that disability does not matter and makes it difficult to inquire as to the ways that different knowledge standpoints place us in different relationships to not just disability but also power and marginality. It is all too easy to become silent about the costs of living with disability in an ableist world and the differences between disabled and nondisabled people. Recent research correlates the experience of racism to low socioeconomic status and the acquisition of physical and psychological impairment (Williams & Collins, 1995) in that racism not only causes distress but impacts on mental health status (Krieger, 1999). Racism can be experienced as a personal deficiency on the part of the discriminated, that is, what have

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I done or not done to bring about this behavior or response (“blaming the victim”), rather than being aware that the experience of racism is due to racism and not the person’s own interaction. Pyke and Dang (2003) argued that because internalized racism is an adaptive response to racism, both compliance and resistance reproduce or replicate racism in interrelated ways. In examining sites for the internalization of racism, Burstow (2003) made it clear that we should not be looking at a single event or site of impact, rather, internalization occurs through the accumulative, residual, and reoccurring experiences of racism. Burstow remarked that “the point is oppressed people are routinely worn down by the insidious trauma involved in living day after day in a sexist, racist, classist, homophobic, and ableist society” (p. 1296). Within ableism, the existence of disability is tolerated rather than celebrated as a part of human diversification. I contend that internalized ableism utilizes a two-pronged strategy, the distancing of disabled people from each other (dispersal) and the adoption by disabled people of ableist norms (emulation). These two strategies are described here.

TACTICS OF DISPERSAL The experience of disablement can, arguably, be spoken of not in terms of individualized personal tragedy but in terms of communal trauma where the legacies of ableism pervade both conscious and unconscious realms. Although the prevailing theme has been the individualization of disability through the domination of medicine, nonetheless histories of catastrophe, negative portrayals of disability, and an absence of celebratory role models collectively saturate the lives of disabled people. Unlike other minority groups, disabled people have had fewer opportunities to develop a collective conscious, identity, or culture. The connection between epistemologies (knowledge forms) of ableism and the production of internalized ableism can be seen in social role valorization theory (SRV) as articulated by Wolf Wolfensberger (1972). This theory is also known by the name of normalization. His strategy of “conservatism corollary” explicitly discourages fellowship among persons with disabilities and other minorities. According to Wolfensberger, the conservatism corollary posits that the greater the number, severity, and/or variety of deviances or stigmata of an individual person, or the greater number of deviant/stigmatized persons there are in a group, the more impactful it is to: (a) reduce one or few of the individual stigmata within the group, (b) reduce the proportion or number of deviant people in the group, or (c) balance (compensate for) the stigmata or deviancies by the presence, or addition, of positively valued manifestations. (Wolfensberger & Thomas, 1983, p. 26)

Wolfensberger argued that “when a significant proportion of people within a distinct or compact group have one or more such oddities, then the whole group including non-stigmatized members is apt to be negatively stereotyped” (Wolfensberger & Thomas, 1983, p. 26, emphasis added). In other words,

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the consequence requires that disability service workers overcompensate to reduce or minimize any devaluing characteristics. The reality of the outcome is that it does nothing to interrogate and challenge hegemonic ideas that exclude, separate, and subordinate people with disabilities. Instead, the approach actively promotes separation between and within groups of so-called stigmatized peoples. Clearly, this is a precursor to a strategy of dispersal, predicated on the belief that disabled people should not draw attention to each other via associating (with other culturally devalued people) (Szivos, 1992). This dilution of deviancy is familiar in the histories of other marginalized populations such as Indigenous, colored, and gay and lesbian peoples. The consequences of dispersal generate internalized ableism in that mixing with other people with impairments is interpreted as a negative, inadvisable choice. Dispersal policies are only permissible because the integration imperative exists and receives support from the disability services sector. The integration imperative is based on the belief that mainstream institutions and methods are superior to other separate settings (O’Brien & Murray, 1996) that include subcultural environments. These subcultural spaces should not be confused with segregated or institutional environments. As Watts-Jones (2002) pointed out, within group processes can act as a sanctuary for healing internalized oppression. However, dispersal strategies deny disabled people access to this sanctuary.

EMULATING THE NORM Schwalbe and Mason-Schrock (1996) argued that for Asian Americans to deflect stigma, they often engage in “defensive othering.” Defensive othering occurs when the marginalized person attempts to emulate the hegemonic norm, whiteness or ableism, and assumes the “legitimacy of a devalued identity imposed by the dominant group, but then saying, in effect, ‘there are indeed others to whom this applies, but it does not apply to me’ ” (p. 425). This attitude is evident in a state-supported system of diagnostic apartheid based on the evaluative ranking of bodies according to type and severity of impairment. The “naturalness” ’ of the notion of the able-bodied liberal individual coupled with the negation of a disabled sensibility makes many disabled people queue for the chance to be anointed as “people first,” whilst simultaneously disavowing their previous embodied positions as “gimps;” and “cripples.” Ironically, disabled people who achieve “people first” status are not achieving full normative status but are only legitimizing an able-bodied resemblance through their desire for normality. (Overboe, 1999, p. 24)

The desire to emulate the other (the norm) establishes and maintains a wide gap between those who are loathed and that which is desired. The linkage between internalized racism as a rational response to oppression makes it possible to examine the operation of dishonor. Watt-Jones (2002) noted two levels of shame; the first is linked with being a person of color, the second relates to a shame induced by being consciously aware of one’s shamefulness.

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Kuusisto’s (1998) autobiographical extract, Planet of the Blind, captures this sense of shame for people with disabilities: Raised to know I was blind but taught to disavow it, I grew bent over like the dry tinder grass. I couldn’t stand up proudly, nor could I retreat. I reflected my mother’s complex bravery and denial and marched everywhere at dizzying speeds without a cane. Still, I remained ashamed of my blind self, that blackened [sic] dolmen. (p. 7)

Shamefulness is magnified in culture where the rhetoric of being a survivor, a nonvictim, is powerful and being a victim is to be “passive or deficient” (Watt-Jones, 2002, p. 594). For “enlightened” disabled people, such shame taps into a wellspring of discourses of residual disability deficiency. The emerging counterstory of the disability survivor prevents us from exploring the personal costs of disability subordination and normalization. For instance, in my own scholarly community, the few staff members with disability report privately struggling with demands to perform, live up to leadership challenges, and mentoring expectations. As an isolated minority, there are few opportunities to find a sanctuary for healing/sheltering from the forces of ableism. In Australia, there is an awareness that many of our disability rights movement leaders are suffering burnout, have had emotional collapses or just moved on to cope with the realities of living in a hostile world. Internalized ableism can mean the disabled person is caught between a rock and a hard place. To attain the benefit of a “disabled identity,” one must constantly participate in the processes of disability disavowal, aspire toward the norm, reach a state of near-ablebodiedness, or at the very least to effect a state of passing. As Kimberlyn Leary (1999) described: “Passing occurs when there is perceived danger in disclosure. . . . It represents a form of selfprotection that nevertheless usually disables, and sometimes destroys, the self it means to safeguard” (p. 85). The workings of internalized ableism by way of passing, are only possible by moving the focus from the impaired individual to the arena of relationships. Ableist passing is not just an individual hiding their impairment or morphing their disability; ableism involves the failure to ask about difference such as disability/impairment. For internalized ableism to occur there needs to be an existing a priori presumption of compulsory ableness. Such passing is about not disturbing the peace, containing the matter that is potentially out of place.4 An example of passing under these circumstances would be experience trepidation about revealing one’s impairment status fearing stigma and workplace discrimination, despite the fact that work colleagues would benefit from disability-focused mentoring and exposure (see Bishop, 1999; Monaghan, 1998). A benchmark of successful inclusion is the acquisition of new skills for performing the part(s) of a disembodied abled self. Although there can be no denial of an injured body, one solution is to emphasize those aspects of self that are able to mimic the qualities of ableist personhood. The disabled body is constantly in a state of deferral, in a holding pattern, waiting for the day it will be not just repaired but made anew (cured). Until then the conditions of

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fabrication, of mimicking the abled body, are usually of a disembodied kind because it is assumed that flight from the body will act as a distraction toward those assimilating qualities of social conduct and deportment. In time, we will be able to re-create normalcy by rebuilding or morphing the injured body to a form that for all practical purposes replicates the old (whole) form (see Campbell, 2004). New technologies, therefore, have the effect of reconceptualizing impairment in terms of provisional or tentative disability (Campbell, 2005, 2007), thus promoting ableism. Internalization involves apprehending that which “belongs to the other” (and incorporating it as) one’s own” (Wertsch, 1998, p. 53). Clearly the processes of internalization are not straightforward and predictable. As Fanon (1963) remarked: “In the colonial context the settler only ends his work of breaking in the native when the latter admits loudly and intelligibly the supremacy of the white man’s values” (cited in McClintock, 1995, p. 329). The internalization process requires something that “only their superior dominators have or can give them” (Oliver, 2004, p. 78). Internalized ableism means that to emulate the norm, the disabled individual is required to embrace, indeed to assume, an identity other than his or her own. That is not to imply that people have only one true or real essence. Indeed, identity formation is in a constant state of fluidity, multiplicity, and (re)formation. However, disabled people often feel compelled to manufacture who they are—to adopt aspects that are additional to self. It is useful to concentrate on what Butler (1997b) aptly referred to as the psychic life of power. She describes this psychosocial dimension as an account of subjection, it seems, must be traced in the turns of psychic life. More specifically, it must be traced in the peculiar turning of a subject against itself that takes place in acts of self-reproach, conscience, and melancholia that work in tandem with processes of social regulation. (p. 19)

Sometimes disabled people adopt the labels of disablement strategically to gain access to access social benefits. This adoption of a disability category or classification does not mean that an individual with disability holds to a belief that he or she is disabled. For example, deaf people registering for disability programs, even if sections of this group do not identify as disabled. Rather, without a classification or diagnosis it is very difficult to have certain needs arising out of bodily or mental differences recognized. This approach might initially seem commendable and even viewed as an act of subversion against government regulation; however, it also may produce a conflicted self. In other words, the processes of identity formation cannot be separated from the individual who is brought into being through those very subjectifying processes. Butler (1997b) describes this process of the “carrying of a mnemic trace”: One need only consider the way in which the history of having been called an injurious name is embodied, how the words enter the limbs, craft the gesture, bend the spine . . . how these slurs accumulate over time, dissimulating their history, taking on the semblance of the natural, configuring and restricting the doxa that counts as “reality.” (p. 159)

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It is beyond the scope of this chapter to discuss these complex processes in detail; suffice to say that people with disability do not passively and uncritically absorb negative representations of disability. Rather, life involves a constant negotiation with competing responses to disability (both positive, negative, and contradictory) often resulting in an ongoing state of ambivalence. Philosopher Linda Purdy (1996) contended that it is important to resist conflating disability with the disabled person. She writes, “My disability is not me, no matter how much it may affect my choices. With this point firmly in mind, it should be possible mentally to separate my existences from the existence of my disability” (p. 68) The problem with Purdy’s conclusion is that it is psychically untenable, not only because it is posited around a type of dualism, that simply separates beingness (the mind and emotions) from embodiment (matter, in this case the body) but also because this kind of reasoning disregards the dynamics of identity formation (Butler, 1997a, 1997b). The experience of impairment within an ableist context can and does effect the formation of self—in other words “disability is me,” but that “me” does not need to be imbued with a negative sense of self-ness. Purdy’s bodily detachment appears locked into a loop that is filled with internalized ableism, a state with negative views of impairment, from which the only escape is disembodiment and the penalty of denial is a flight from her body. By unwittingly performing ableism, disabled people become complicit in their own demise, reinforcing impairment as an undesirable state. What begins as an attempt to gain benefits and potentially usurp the forces of classification and calculation in the governing of disability often ends up becoming complicit, reproducing the constitutional ontologies essential to the continued power of ableism. The deployment of the denotation of disability strategically cannot be undertaken without some incorporation of internalized ableism, either at a conscious or unconscious level. Within ableism, disability cannot be detached from its negative association. People living with an impairment face these two coexisting dynamics, sometimes jostling in tension, even when adopting outlaw and resistant subjectivities and lifestyles. I HATE [it] when people tell me how well I’ve overcome my disability. To me, it’s suggesting that I am separate from my body. But my body is me and I am my body. This includes my disability. It is part of who I am and a part of what makes my body beautiful and a part of what makes me a beautiful person. My disability CANNOT be separated from who I am. I cannot overcome my own body. (Shain, 2002)

By applying CRT (see Delgado & Stefancic, 2000) to an analysis of ableism, this discussion has pointed to its embeddedness in our society. The very existence of ableism and its effects, like racism, are covert, but more often profoundly hidden. Ableism is an epistemology (a knowledge framework) and an ontological modality (a way of being) that frames an individual’s identity formation and, thus, becomes the power “that animates ones emergence,” through complicity and resistance (Butler, 1997b, p. 198). At the end of

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this chapter, two strong images of living with impairment emerge. The first is of disabled people as survivors. People with disabilities labor under the pain and burden of violence. This laboring has resulted in lives of ontological vulnerability. There is an ethical imperative for us to interrogate the impact of ableism and speak of the injuries it causes for disabled people. By exposing the practices of ableism and the hidden process of internalized ableism, I am mindful of the necessity to not cause further injury. An example here could be the continual use of photographic images of people exhibited as freaks and reexhibited to illustrate ableist practices. To do so reinforces the notion of an overwhelming vision of catastrophe, where disabled people are forever sucked into the vortex of being perpetual victims. This chapter invites the reader to enter the field of critical ableism studies. It argues the critical need to investigate internalized ableism and its effects on the psychic life of the community. One of the approaches of CRT is storytelling, or counterstorytelling, in combination with the “historical triangulation of facts that have an impact on present-day discrimination” (Parker & Stovall, 2004). The historical silence of disabled people has been overcome through the emergence of the disability rights movement and the development of critical disability studies. However, the study of ableism, especially internalized ableism, moves outside the narrow confines of individualized life stories and squarely locates itself within a collectivist history of ideas and the field of discursive practices. For example, further research could explore the process of counterstorytelling about so-called disability success stories. Normally these stories are based on the notion of success in spite of impairment, which is profoundly different to stories that embrace impairment and are based on the notion of success because of disability or stories about living with ableism. The second image is of disabled people engaged in guerrilla activity— rejecting the promises of liberalism and looking elsewhere, daring to think in alternative ways about impairment. For too long, marginality and liminality have been viewed as places of exile from which the emarginated are to be brought in from the cold and integrated so they too can sit beside the warm fires of liberalism (and all will be well). However, as bell hooks (1990) reminded us, the margin can be “more than a site of deprivation . . . it is also the site of radical possibility, a space of resistance” (p. 149).

NOTES An earlier but significantly different version of this chapter appeared as Campbell (2008). This chapter is dedicated to the memory of Genni Batterham, Geoff Bell, Sandy Blithe, Christopher Newell, and Michael Norton. 1. I am adopting the convention of using “disabled people” instead of “people with disability” in recognition that ableist processes and practices do indeed produce disabled people. Additionally, as will be become evident in this chapter, disability and impairment are difficult to separate from a person’s beingness. 2. The practice of partitioning, classifying, and dividing groups into races and making “raced” people not only shapes our sense of self, it can tell us who and what we are and are not. 3. For more work in this area, see Campbell (2008).

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4. Thomson cited a number of strategies such as charm, humor, deference to relieve the discomfort of able bodied people (Thomson, 1997, pp. 12–13).

REFERENCES Akbar, N. (1996). Breaking the chains of psychological slavery. Tallahassee: Mind Productions. Baster, J. (1954). Recent literature on the economic development of backward areas. Quarterly Journal of Economics, 68(4), 585–600. Bishop, H. (1999). Posting to the colloquy: Whose field is it anyway? Disability studies and the academy. Chronicle of Higher Education, February 24, online at http://chronicle.com/colloquy/99/disability/35.htm. Bolderson, H. (1991). Social security, disability and rehabilitation: Conflicts in the development of social policy 1914–1946. London: Jessica Kingsley. Burstow, B. (2003). Toward a radical understanding of trauma and trauma work. Violence against Women, 9(11), 1293–1317. Butler, J. (1997a). Excitable speech: A politics of the performative. New York: Routledge. Butler, J. (1997b). The psychic life of power: Theories in subjection. Stanford: Stanford University Press. Campbell, F. (2001). Inciting legal fictions: Disability’s date with ontology and the ableist body of the law. Griffith Law Review, 10, 42–62. Campbell, F. A. K. (2004). The case of Clint Hallam’s wayward hand: Print media representations of the “unco-operative” patient. Continuum: Journal of Media & Cultural Studies, 11(3), 443–458. Campbell, F. A. K. (2005). Legislating disability: Negative ontologies and the government of legal identities. In S. Tremain (Ed.), Foucault and the government of disability (pp. 108–130). Ann Arbor: University of Michigan Press. Campbell, F. (2007). States of exceptionality: Provisional disability, its mitigation and citizenship. Socio Legal Review, 3, 28–50. Campbell, F. A. K. (2008). Exploring internalised ableism using critical race theory. Disability & Society, 23(2), 151–162. Cohen, C., Wilk, R., & Stoeltje, B. (1996). Beauty queens on the global stage: Gender, contests, and power. New York: Routledge. Corker, M. (2001). Sensing disability. Hypatia, 16, 34–52. Cox, O. (1948). Caste, class, and race. New York: Doubleday. Delgado, R. (2000). Storytelling for oppositionists and others: A plea for narrative. In R. Delgado & J. Stefancic (Eds.), Critical race theory the cutting edge, 2nd ed. (pp. 60–70). Philadelphia:Temple University Press. Delgado, R., & Stefancic, J. (Eds). (2000). Critical race theory the cutting edge, 2nd ed. Philadelphia: Temple University Press. Fanon, F. (1963). The wretched of the earth. London: Penguin. Frankenberg, R. (1993). White women, race matters: The social construction of whiteness. Minneapolis: University of Minnesota Press. Freire, P. (1970). Pedagogy for the oppressed. New York: Seabury. Goggin, G., & Newell, C. (2000). Crippling paralympics? Media, disability and Olympism. Media International Australia, 97, 71–83. Gordon, B. O., & Rosenblum, K. E. (2001). Bringing disability into the sociological frame: A comparison of disability with race, sex, and sexual orientation statuses. Disability and Society, 16 (1), 5–21. Grosz, E. (1994). Volatile bodies: Toward a corporeal feminism. St Leonard: Allen & Unwin.

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Hahn, H. (1986). Public support for rehabilitation programmes: The analysis of US disability policy. Disability & Society, 1(2), 121–137. Harvey, A. (1995). The issue of skin color in psychotherapy with African Americans: Families in society. Journal of Contemporary Human Services, 76(1), 3–20. hooks, b. (1990). Yearning: Race, gender and cultural politics. Boston: South End Press. Jones, J. (1972). Prejudice and racism. Reading, MA: Addison-Wesley. Johnson, L., & Moxon, E. (1998). In whose service? Technology, care and disabled people: The case for a disability politics perspective. Disability & Society, 13, 241–258. Kovel, J. (1970). White racism, a psychohistory. New York: Columbia University. Krieger, N. (1999). Embodying inequality: A review of concepts, measures, and methods for studying health consequences of discrimination. International Journal of Health Services, 29(2), 295–352. Kuusisto, S. (1998). Planet of the blind. London: Faber & Faber. Leary, K. (1999). Passing, posing, and “keeping it real.” Constellations, 6, 85–96. Linton, S. (1998). Claiming disability: Knowledge and identity. New York: New York University Press. Marks, D. (1999). Disability: Controversial debates and psychosocial perspectives. London: Routledge. McClintock, A. (1995). Imperial leather: Race, gender and sexuality in the colonial context. New York: Routledge. Mitchell, D., & Snyder, S. (2003). The eugenic Atlantic: Race, disability, and the making of an international eugenic science, 1800–1945. Disability & Society, 18(7), 843–864. Moffett, G. (1994). UN population conference meets religious resistance. Christian Science Monitor, 6(1), 4. Monaghan, P. (1998). Pioneering field of disability studies challenges established approaches and attitudes. Chronicle of Higher Education, 44(20), A15–A16. O’Brien, P., & Murray, R. (Eds.) (1996). Human services: Towards partnership and support. Palmerston North (N.Z.): Dunmore Press. Oliver, K. (2004). Witnessing and testimony. Parallax, 10(1), 78–87. Overboe, J. (1999). Difference in itself: Validating disabled people’s lived experience. Body & Society, 5, 17–29. Parker, L., & Stovall, D. (2004). Actions following words: Critical race theory connects to critical pedagogy. Educational Philosophy and Theory, 36(2), 167–182. Purdy, L. (1996). Loving future people. In Reproducing Persons. Ithaca, NY: Cornell University Press. Pyke, K., & Dang, T. (2003). “FOB” and “whitewashed”: Identity and internalized racism among second generation Asian Americans. Qualitative Sociology, 26(2), 147–172. Rodin, J. (1993). Cultural and psychosocial determinants of weight concerns. Annals of Internal Medicine, 119(7/2), 643–645. Rosenwasser, P. (2000). Tool for transformation: Co-operative inquiry as a process for healing from internalized oppression. Adult Education Research Conference (AERC). University of British Columbia June 2–4, 2000, Online at http:// www.edst.edu.ubc.ca/aerc/2000/rosenwasserpl-final.PDF. Scheerenberger, R. C. (1983). A history of mental retardation. Baltimore: Paul H. Brookes. Schwalbe, M., & Mason-Schrock, D. (1996). Identity work as group process. Advances in Group Processes, 13, 113–147. Shain, A. (2002). Intimate encounter participant quotes. Intimate Encounters (Photographic Exhibition), B. Mason-Lovering, producer, http://www.intimateencounters .com.au/participants/quotes.html.

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Stubblefield, A. (2007). Beyond the pale: Tainted whiteness, cognitive disability and eugenic sterilization. Hypatia, 22(2), 162–181. Stainton, T. (1994). Autonomy and social policy: Rights, mental handicap and community care. Aldershot: Avebury. Szivos, S. (1992). The limits to integration? In H. Brown & H. Smith (Eds.), Normalisation: A reader for the nineties (pp. 112–134). London: Routledge. Thomson, R. G. (1997). Extraordinary bodies: Figuring physical disability in American culture and literature. New York: Columbia University Press. Tremain, S. (Ed.) (2005). Foucault and the government of disability. Ann Arbor: University of Michigan Press. Watts-Jones, D. (2002). Healing internalized racism: The role of a within group sanctuary among people of African descent. Family Process, 41(4), 592–593. Wertsch, J. (1998). Mind as action. New York: Oxford University Press. Williams, D., & Collins, C. (1995). US socio-economic and racial differences in health. Annual Review of Sociology, 21, 349–386. Wolfensberger, W. (1972). The principle of normalization in human services. Toronto: National Institute on Mental Retardation. Wolfensberger, W., & Thomas, S. (1983). PASSING: Program analysis of service systems’ implementation of normalization goals: A method of evaluating the quality of human services according to the principle of normalization, normalization criteria and ratings manual. Ontario: National Institute on Mental Retardation.


CHAPTER 4

But Stroke Happens to Older People Doesn’t It? The Experiences of “Young” People Following Stroke Tara Catalano and Elizabeth Kendall

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any researchers have explored the psychosocial implications of stroke from the patient’s perspective (e.g., Buscherof, 1998; Faircloth, Boylstein, Rittman, Young, & Gubrium, 2004; Jongbloed, 1994; Pilkington, 1999; Pound & Gompertz, 1998; Roding, Lindstrom, Malm, & Ohman, 2003). They have concluded that the impact of stroke is profound, permeating every aspect of an individual’s life, as well as the lives of their family members. Stroke often results in a great deal of stress, particularly due to its suddenness of onset, the lack of control over circumstances, and the pervasive loss that occurs in all domains of life (Churchill, 1998). Although stroke tends to be associated with age, it does occur in younger people. Despite this growing interest in the psychosocial consequences of stroke, we have only recently extended our focus to the issues, experiences, and unmet needs of younger people (e.g., Kersten, Low, Ashburn, George, & McLellan, 2004; Roding et al., 2003; Shin, Porter, Wallace, & Naglie, 1997; Smout, Koudstaal, Ribbers, Janssen, & Passchier, 2001; Teasell, McRae, & Finestone, 2000). Consequently, the subjective experiences of younger persons following a stroke remain relatively underexplored, despite the potential value of sharing these accounts (Wachters-Kaufmann, 2000). This chapter presents the views of six younger people (i.e., five females and one male under 55 years) as they discussed their adjustment at six monthly intervals over the first 18 months following a stroke. These young people were asked about their poststroke experiences, including their primary concerns about their condition, any changes in their health, and their support arrangements in the community. They were encouraged to share any information they felt was important to their poststroke recovery. At the time of stroke, one participant was in her twenties, two were in their thirties, and

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three were in their forties. Their discussions highlighted three interrelated themes that characterized the poststroke experiences of these young people, including (a) the experience of isolation after the stroke event, (b) the understanding of a “new normal,” and (c) re-engagement into the community. The chapter first reviews the literature on young stroke and then explores these three themes in more detail. Stroke, or cerebrovascular disease, is an acute medical emergency that involves lack of oxygen and damage to brain tissue as a result of either a blocked artery (ischemic) or bleeding caused by a break in the wall of a blood vessel (hemorrhagic) (National Stroke Foundation, 2008a). The severity and location of the damage caused by stroke will impact on the extent of impairment and the recovery potential of the individual (National Stroke Foundation, 2008b). Stroke may result in a range of long-term, diverse, and profound changes to physical, cognitive, sensory, emotional, behavioral, and/or social functioning ranging from slight to severe and temporary to permanent (Becker & Kaufman, 1995). Consequently, stroke may result in long-term residual disability, compromising an individual’s quality of life and well-being. As noted by Becker and Kaufman, “many aspects of a person’s body, personality and total sense of being can be affected” (p. 168). For the most part, stroke continues to be viewed as a condition of old age (Australian Institute of Health and Welfare [AIHW], 2006), despite increasing numbers of younger people affected by stroke. According to the National Stroke Foundation, nearly one in five persons who sustains a stroke is under 55 years of age. Yet due to the fact that stroke rates increase with age, the median age of those who have experienced a stroke is 79 years (AIHW, 2006). Consequently, the needs of younger people have not generated as much attention, and services are predominantly designed for older people, potentially contributing to younger people feeling “frustrated and invisible” (Roding et al., 2003; Stone, 2005). However, recent work has been undertaken to draw attention to the level of ongoing unmet need in the younger population following stroke (Kersten et al., 2004). There is some evidence that residual disability following stroke varies depending on the age of the person affected. For instance, Teasell and McRae (1998) found that although stroke was not common in people under 50 years, they were more likely than older stroke patients to have a good neurological recovery, higher levels of functional independence, and, as a result, less disability. This finding was largely attributed to a “relative absence of previous and co-existing medical problems” and “organic intellectual impairment” in younger people, which may be more common in older people (p. 576). Yet other studies have reported that younger people are at a high risk for disability following stroke, potentially compromising their quality of life and future productivity, emphasizing the need for aggressive secondary stroke prevention in this population (Ning & Furie, 2004). Indeed there is a dire need for early identification and treatment of issues such as fatigue, physical disability, and depression for younger people (Naess, Waje-Andreassen, Thomassen, Nyland, & Myhr, 2000). Despite the importance of these findings, there is a large body of literature suggesting that successful recovery requires more than physical and functional

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improvement (Churchill, 1998; Sisson, 1998; Swartzman, Gibson, & Armstrong, 1998; Thompson, Sobolew-Shubin, Graham, & Janigian, 1989). Indeed, a host of psychosocial issues are commonly experienced following stroke that impact on quality of life, including emotional upheaval, altered self image, poor self-esteem, loss or change to valued social roles and activities, disruption to family functioning, child care issues, and return to work transitions (Buscherof, 1998; Jongbloed, 1994; Keppel & Crowe, 2000; Pilkington, 1999; Pound & Gompertz, 1998; Roding, et al., 2003; Sisson, 1998; Teasell et al., 2000). Many of these issues experienced by younger people are complicated by the “invisibility” of their disabilities following stroke (Stone, 2005). Understanding the meaning and importance attributed to these psychosocial issues by younger people affected by stroke is critical if our society is to provide adequate supports for their poststroke recovery and adjustment process. Indeed, Faircloth et al. (2004) argued that stroke does not “inevitably disrupt” the lives and “biographies” of all survivors, and it is critical that individual interpretations of stroke be sought rather than treating each person’s experience as “universal.”

THE YOUNG PEOPLE At the time of her stroke, Mary was in her early thirties, married with two young children and working full-time in the horticulture industry. Following her stroke, Mary spent six weeks as an inpatient in a geriatric rehabilitation unit engaged in physiotherapy, occupational therapy, and speech therapy. Relearning to walk was a major focus of her rehabilitation. Once home, she described feelings of anger and frustration at the limitations she experienced because of the stroke (e.g., difficulty with household chores, physical tasks, working) and difficultly accepting help from others (e.g., her husband). Mary hastened her return to work approximately three weeks following discharge from hospital because she felt bored and trapped at home. She acknowledged that this was premature due to her early stage of recovery, but found her workplace extremely supportive and the purposeful activity and social element highly beneficial. Returning to previous activities and roles was experienced as very healing for Mary. The support of her husband and friends was described as extremely important to her recovery. Michael was in his early forties at the time of his stroke. Along with his wife and three young children, he had recently relocated to a new city and started a family business just prior to his stroke. Consequently, the family was extremely isolated with a very limited social network. Michael had a lengthy stay in a geriatric rehabilitation unit following his stroke. He described his most pressing ongoing concerns as his impaired vision, balance, cognitive functioning (e.g., memory, learning), and physical functioning (e.g., walking). Due to the severity of his disability, Michael was unable to return to work at the time of the interviews and was focusing on a range of other purposeful goals, such as extending his social network, building his physical strength, and engaging in volunteer work. Michael explained that he was extremely uncomfortable venturing outside of the “safety” of his home environment

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because he did not have the confidence to manage in new environments without support. He described feelings of frustration, loss, and grief at the changes to his life since the stroke. He had enjoyed football previously and could no longer play himself, but had commenced a coaching role to keep his hand in his beloved sport. However, he felt he always had to prove himself to the guys; because of the nature of his disability, he felt he didn’t have their respect. A positive consequence of his stroke was more time to spend with his wife and children, as he described his prestroke self as a workaholic who spent little time with his family. Janet was in her early forties at the time of her stroke, living with her spouse and two young children. She described a range of ways that the stroke impacted on her life, including physical, emotional, and social issues. Lack of mobility and stamina were major issues for Janet, who focused her energies on improving her walking and strength through ongoing physiotherapy. She could not drive or work for several months poststroke and felt trapped and isolated. The support of her spouse and mother were instrumental in her recovery; however, she disliked relying on others. Physical issues were only a small part of how the stroke affected her life. Janet also found that stroke had profoundly affected her life in many other ways, including the well-being of her children and spouse, financial well-being (i.e., loss of income), and emotional and social well-being. Janet sought the help of a neuropsychologist to manage depression and learn new skills such as goal setting. A graduated return to part-time work at four months poststroke was perceived as highly beneficial, but Janet did not receive any support to manage this process. By the last interview, Janet believed her confidence, mobility, and emotional state had improved dramatically over time. However, reflecting on her journey, she was extremely disappointed in the health care system’s capacity to meet her needs as a younger person following stroke. Jenny was in her twenties at the time of her stroke. She lived with her baby daughter and fiancé at the time of her stroke, but this relationship ended during the time she was involved in this study. Jenny blamed the changes brought about by the stroke for the breakdown of her relationship. Although she experienced a range of consequences of the stroke (e.g., impaired mobility and vision, fatigue) she described the emotional consequences as the most distressing and problematic (including severe depression), which impacted on her relationships with friends, family, and her fiancé. She often felt misunderstood by others in her life, who didn’t seem to appreciate or understand what she was going through. Jenny felt lost and confused about where her life was headed and let down by her networks. She and her daughter moved in with her mother for a period of time following the breakdown of her relationship and by the end of the study she had moved into her own unit. Interestingly, she never spoke about the impact of the stroke on her daughter. By the last interview, Jenny had extended her social network and was enjoying new friendships, but still described feelings of depression and confusion about her life. Marie was in her late forties at the time of her stroke, living with her spouse and teenage daughter. The main issues she described included impaired speech, extreme fatigue, and short-term memory loss. Although Marie had returned to work fairly quickly following the stroke, she described ongoing challenges


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of managing both her professional and domestic roles and activities due to her limited energy reserves and memory impairment. Marie had a recurrence of stroke several months after the first one and expressed ongoing fear that she would have another stroke and either die or become more severely disabled. Her disability was largely invisible, which posed major challenges in both the workplace and in relationships. Although Marie had the support of her spouse, daughter, and friends, she often felt misunderstood and isolated. Jane was in her late forties at the time of stroke, living with her spouse and working full-time in an administrative role in a law firm. Following a lengthy stay in a geriatric rehabilitation unit, Jane described her predominant ongoing difficulties as being unable to walk or talk properly and not being able to use her arm (hemiplegia). Speech therapy and physiotherapy were key foci of her recovery. Due to her stroke, she was unable to drive and relied on her spouse, friends, and neighbors to get around. Approximately eight months following her stroke, Jane returned to part-time work with her previous employer and found this to be highly beneficial. She reported the same concerns (i.e., limited use of her arm and leg, difficulty walking and talking) at the last interview as she had at the first. Jane had attended physiotherapy for 16 months. She remained hopeful for greater improvement but felt frustrated and down. She found that the stroke had not only affected her physically but had impacted on her self-esteem as well.

The Experience of Isolation after Stroke All five young people described their poststroke journey as an isolating experience. Isolation was experienced as a sense of being “alone,” “trapped,” and “misunderstood” following their stroke—their isolating experiences were played out in a physical, social, and emotional sense, with isolation appearing to take on many forms. Isolation was experienced at multiple times and within multiple contexts along the poststroke journey. The isolation described by participants was experienced as a consequence of interactions at the level of the health care system, community, and interpersonal relationships (i.e., with family and friends).

Isolation within the System Interactions with the health and social care system were extremely isolating experiences. The younger people were critical of the lack of age-appropriate contexts, supports, and services to meet their needs following a stroke. From the outset of their poststroke journey, they felt that the context in which they were being treated was geared toward “older” people, and thus was “the wrong place” for them. Acute care and inpatient rehabilitation settings were likened to “an old-age nursing home” due to the fact that most of the people being treated for stroke were elderly. It was so difficult for me in hospital. It took a few weeks for me to adjust to even being in a place that was like a nursing home. . . . All I did was cry. I cried, not because of my condition, the way I was. But because I was in the wrong place! That’s how I felt.

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The young people suggested that rehabilitation workers might lack the skills to provide appropriate support to a younger group, as they maybe unfamiliar with addressing the ongoing needs of younger patients. Consequently, the young people felt as though they were left alone to fend for themselves because they could not access support from within the system to help them meet their needs. Because I’m younger and more mobile, I was having problems with a sore back. I was sure it was related to my walking. . . . So I went back to the [hospital], the physio[therapist] there. And I said, “look, I’m having problems with my back, is there any exercises or just something I can do at home that will help me?” They said, “we don’t generally have this problem because we deal mostly with elderly people and they’re not as mobile as you.” And I said, “yes, I am mobile, and I am young and I am moving about and it is a problem.” And . . . they couldn’t offer me any meaningful follow-up. . . . They said, “oh well, you’ll just have to learn to live with that.”

Young people struggled to access appropriate information, assistance, and understanding from professionals about the challenges that they were experiencing due to their age. Without access to this type of support and understanding, younger people were left feeling isolated in their efforts to make sense of their stroke and maximize their recovery. I’ve found on the whole that with the rehab[ilitation], and the whole stroke issue, that’s it’s very focused towards aged people. There’s not a lot of information or assistance available or understanding available to young people at all. It doesn’t really deal with the changes that young people have.

Examples such as these highlighted the presence of an increased sense of personal responsibility and desire to manage or take control of their condition and its treatment among these young people. Even if individuals manage their own rehabilitation, health professionals are vital to the process of supporting self-management efforts following stroke and, in doing so, perhaps facilitate a more positive outlook earlier on in the recovery trajectory. When it comes down to it, you’re only a number with them [doctors]. . . . You’re just another person who’s had one [stroke]. . . . So really, you’ve got to heal yourself, and it’s what you get out of it and do for yourself really. . . . And I’m not mad at the doctors or anything. There are a lot of sick people who need help. As long as they can tell me . . . how I was to get better and what to do for myself. . . it’s very hard in the beginning, when you’re a bit out of it, to try and have a positive outlook. . . that comes in time. I think it took about six months . . . to even think that maybe I’ll be better and things will look up for me.

The young people with stroke required appropriate support and expert advice from health professionals. In the absence of such systemic support, the young people felt let down and further isolated in their poststroke journey— they felt they were very much on their own. The limitations of the system emphasized the individual’s role in their own healing and recovery process, which contributed to their sense of isolation.


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Isolation within the Community Once discharged from hospital, locating age-appropriate services in the community to support the next phase of the poststroke journey proved no easier and remained a prominent issue for younger people. The lack of support groups for younger people was mentioned on numerous occasions. Younger people did not feel as though they fit in with an “elderly [support] group” because their needs and experiences were different. Even local support groups labeled as “younger” were comprised mostly of individuals who were in their fifties and sixties, resulting in those who were “younger” still experiencing a sense of isolation from the wider stroke community. I felt disappointed . . . that people refer to young stroke victims [and]. . . define that as 60 (and) below or 55 and below. Well sorry, the needs of a 40-year-old or between 30 to 45 are entirely different to 60 years old. It is not the same and you should not be put in the same group. Because most people who are 55 or 60 have raised their families, are financially settled and basically . . . the changes are not as great—the changes in them, as people who are younger who have growing children [and] who still have primary care for the children. Really . . . they’re not the same.

The young people described how they wanted to get back to “normality,” indicating a strong desire to move beyond problem-focused supports that reinforced their status as a stroke recovery patient. Younger persons clearly wanted support to be offered in ways that were more meaningful to their life stage and contributed to their process of resuming socially valued roles, relationships, and activities in everyday environments. With younger people, really, there’s nothing. There’s nothing around for us [to support us in the community]. Rather than getting around with an elderly group—and I call 60 an elderly group. . . we need to be going out and meeting at a gym or going out for coffee or . . . things that someone your age would normally be doing. Not meeting in a depressing little hall, listening to everyone else’s problems. Just trying to get back to some sort of normality.

One-on-one support and mentoring was proposed by one younger person as a more appropriate model of social support for younger people than existing group based models of support. It would have been really helpful if there had have been someone who was . . . like a buddy . . . who [I] could ring that either had a stroke or is knowledgeable and could have said, “oh, I understand this and I understand that” . . . a mentor for younger people. For younger people I think that would be good. I went to visit a lady who was 40. . . . They [friends of family] asked me to come visit her. And I spoke to her for about an hour or two. We just chatted and had a cup of coffee and she was so grateful that I came and chatted with her. And she could see me, even though I’m not perfect. I said, “I was like you, 6, 12 months ago. But now I’m up and about and doing things.” . . . She could see from someone and experience it and know that this person knows what they’re talking about. And I know everybody is different . . . it’s very hard to have a group of 10 people [in a support group]. . . . I know you can talk generically.

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THE EXPERIENCE: DEFINITIONS, CAUSES, AND CONSEQUENCES Just sometimes you feel if you had one on one . . . person to talk to [that would be better].

These more individualized support options had the potential to facilitate connections between individuals in settings that encouraged community engagement as well as a sense of mutual understanding. Support in the community for family members also appeared to be lacking, leaving young people feeling that their entire family was isolated during their recovery from stroke. The needs of children were particularly overlooked. Children were believed to experience a range of emotions, including frustration and possibly depression, related to the sweeping life changes brought about by their parent’s stroke (i.e., the shift in family roles, change in family dynamics, activity limitations of the parent, etc.). Despite the impact on children, one participant described how their needs went unaddressed and there was no support to assist them to deal with their feelings about the enormous changes to their life. Children aren’t even mentioned. . . . I know, just from observing my two, that . . . it was extremely difficult for them. . . . The kids might be a bit depressed. . . . It was frustrating for me and it was also very frustrating for the children. But they had nobody to talk to.

Isolation from Social Networks In many cases, at least for a period of time, young people found that they were isolated from their social networks and restricted in their social participation as a consequence of their stroke. There were numerous and overlapping factors that contributed to their experience of social isolation following stroke, and they included (a) extended stays in hospital/rehabilitation inpatient settings; (b) absence from the workforce, resulting in protracted periods spent home alone; (c) inability to drive, which left people feeling “stuck in the house” and reliant on others to get out; and (d) myriad changes to their functioning (e.g., physical, emotional, behavioral, cognitive). I guess the isolation. . . being a young stroke victim, having been at work most of the time and now I’m at home and kind of cut off from my social networks. And also the fact that I can’t drive, that exacerbates the isolation. . . . I’ll eventually get my license and that will help with being stuck in the house and having to rely on other people to take me somewhere.

Although not a common theme in the descriptions provided by the young people, there was some evidence of a form of self-centered or self-imposed isolation that served to preserve energy and allow people to direct their attention toward rehabilitation, which was necessary and vital to their process of re-engaging. As one young person noted, “in the beginning I didn’t care about anybody else but me. And really, that’s how you have to be. It’s going to take all your strength to make you better so you can’t worry about nothing else. And it wouldn’t let me worry about anything else.” Loneliness was common in young people’s experiences (e.g. “mainly loneliness . . . the loneliness gets to you sometimes”). Isolation from their social networks often occurred despite the physical presence of others. In this sense,


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isolation was not merely experienced in a physical and practical sense (i.e., inability to actually get out and participate socially) but also in an emotional sense (i.e., connecting with others and feeling understood). The poststroke experience left some young people feeling trapped and alone because they perceived that others were incapable of understanding. You feel like you are trapped in your own little world. I suppose it’s where your mind, your brain, takes you and you can’t see out of that. And I mean, I’ve always felt that . . . unless they’ve had one [stroke] . . . no one really knows what it is [like]. You feel like you’re alone even though you’ve got others around you supporting you, they don’t know what you feel like . . . your mind and your body have trapped you in what you’ve had.

The most critical relationships from which young people expected, needed and valued understanding were with their immediate family. However, sometimes even those closest to the young people failed to understand. Even though my husband and my kids have been there for me, they never sort of realized that they had to have the patience with me that my mind would only let me get better when I was ready. . . . They just didn’t understand it.

Re-engagement Re-engagement with life seemed to involve two interrelated processes that overlapped with their experiences of social isolation—reconnecting with previously established roles, relationships, and activities and/or branching out and creating new opportunities when the previously established roles, relationships, and/or activities were unachievable within the context of stroke-related changes. Young people re-engaged with their previously established roles, relationships, and activities to find some sense of “normalcy” in their poststroke journey (e.g., the ability to reconnect with social networks as though nothing had changed was very positive). However, for the most part, young people faced significant challenges when attempting to re-engage in this way (e.g., lack of understanding undermines relationships). Challenges to their re-engagement served to exacerbate their sense of isolation and raised important questions about “normalcy” (i.e., “they treat me like I’m normal, but I’m not”; or “they think I’m disabled but I am normal”).

Re-engaging with Social Networks Not surprisingly, given the isolating experience of stroke, opportunities to re-engage with their social networks (e.g., friends, family, work colleagues) were a high priority for young people and an important aspect of “getting back to life.” It’s done me a world of good just to get back to work and be with my friends and all that sort of thing. And they’re around my age. And that’s given me more support.

Some young people did not want to be reminded of their stroke and preferred their social networks to treat them as though nothing had happened.

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Others were able to re-engage with existing roles and relationships as though nothing had changed and described this process as one of healing. I think what’s helped me get over it [stroke] too is that they [friends] don’t even talk about it [stroke] to me unless I want to say something. They don’t even say anything. They think, oh well, nothing has really happened. To me that’s good.

In contrast, some young people found it that reconnecting with existing social networks did not always equate to feeling understood. As a result, isolation and loneliness was still experienced despite social re-engagement. Reestablishing connections that reinforced their view of themselves as a younger person were valued and contributed to a sense of normalcy, but if re-engaging presented too many challenges, it could still be isolating. Challenges to re-engagement were numerous, particularly as it meant r enegotiation of roles and responsibilities (e.g., with their spouse or other family members), which created new dynamics within the relationships. My husband, he’s been really really good. He has been patient. I know some days he thinks, “when is she going to get over this.” . . . But it is a lot on him because he’s never been domesticated before. He’s been brought up that a woman does all that sort of thing. When I had the stroke his life was upside down. So he’s adjusted. He adjusted really quickly. He tried real hard. . . . I’ve got to think to myself, I’m not wonder-woman! I’ve got to share the load. I’m getting used to this sharing bit.

Some participants found that their relationships had been negatively altered following their stroke, exacerbating their sense of social and emotional isolation. Tensions, loss, or breakdown of relationships following stroke were often associated with the young person’s perception that their friends, family, colleagues, or partner did not fully understand the impact of stroke on his or her life. Some young people spoke about how their network treated them as though nothing had changed, making them feel misunderstood and reinforcing their isolation because many of the changes they experienced were “invisible” to others. They [family members] see that I’m okay [physically] and they come back and think I’m still the old [self], but a lot has changed.

This perceived lack of understanding, or the perception that others treated them (and wanted them to be) normal, despite their stroke, increased the young people’s feelings of isolation. In response, young people expended energy trying to re-engage and develop a shared understanding of how stroke had impacted on their lives. These efforts were often perceived as being futile. Young people described their efforts to communicate with their social networks about the changes they experienced following stroke as “wasting my breath,” “flogging a dead horse,” and “having a battle.” My [fiancé] can’t understand what I’m going through . . . he thought, “Okay, I had the stroke, now get on with life.” But he’s not listening to me when I say I cannot get on with it as if it didn’t even happen.


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For the most part, the young people wished that others could at least acknowledge the enormous changes they had endured. Although there was a sense of resignation that others might never be able to understand the full extent of the changes or experiences that accompanied their stroke, participants acknowledged that the lack of stroke-related information may be partially to blame. You don’t have a fight with them but you feel like you’re having a battle. And I think to myself, there’s no point trying to fight them and trying to tell them what I feel because they just don’t understand. . . . I don’t want them to treat me any different, but they don’t think that I’ve got a problem anymore. It’s because they don’t know what a stroke is and what it does to you and what it can leave you with. it doesn’t matter how many times you try to explain to them, they’re not going to fully understand what you’re going through. I’d rather just not worry about it. I just accept that they just see me as normal. . . . I suppose the only negative thing I have is just that people don’t understand it. It’s probably because there isn’t enough information out there for people to understand what we go through.

When feedback from their social network acknowledged the journey they had undergone, the enormity of the changes they had experienced, and the way forward (i.e., as opposed to denial of any problems or overstating of disability), younger people were more likely to feel a sense of re-engagement. People kept saying to me, “I can see changes in you and you’re getting better and as the months go by you can see a lot of changes.” It . . . gave me confidence too. And I know myself that I have changed to be better . . . from the beginning of the stroke to now I’ve improved so much.

Although most young people described challenges associated with social re-engagement, one young woman spoke about the complete breakdown of her relationship with her fiancé. This participant explained how her fiancé failed to understand her experience, was frustrated by the changes in her personality, did not know how to support her appropriately, and simply expected her to ‘get on with life.’ My fiancé has moved out. . . . I basically changed after having the stroke. . . . More emotionally than physically . . . mood swings and stuff still from the stroke. . . . He’s just sort of had enough . . . [he] can’t understand what I’m going through. . . . He got the thought of, “okay I had the stroke, now get on with life.” But he’s not listening to me when I say I cannot get on with it as if it didn’t even happen. . . . Our relationship was perfect before I had the stroke, but the stroke has caused this problem in our relationship.

Young people tended to look for reasonable explanations for any failure in their social network to understand their stroke-related changes. Another young woman described her husband’s apparent lack of compassion and understanding as an expression of his fear (i.e., fear of losing his wife), a desire to maintain his positive worldview (i.e., maintaining the view that everything was going to be fine), and his coping strategy (i.e., to disengage emotionally for self-protection).

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THE EXPERIENCE: DEFINITIONS, CAUSES, AND CONSEQUENCES He [spouse] doesn’t want to think about what happened to me. It’s “you’re all right now and don’t worry about it.” . . . He tries to have a positive outlook and tells me not to dwell on it, “you’re okay.” And I’ve said, “but I am different” and he says, “no you’re not.” . . . My daughter . . . reckons that he doesn’t want to face the fact that it could have been worse and he could have lost me. Or still can. He doesn’t want to accept the reality of that. So it’s better [for him] to think I’m better now because I’m doing most things again. And just carry on our happy little life. . . . I wasn’t mad at him. I just thought I wish he was more compassionate to me. I suppose that’s his nurse’s attitude that he can’t afford to get involved with patients so that they are upset every time something happens to a patient. So if a patient is really sick, they’ve got to close themselves off so that it doesn’t affect them.

When re-engagement with the previous social network was not possible, some young people set about developing new social networks. This activity was a critical step in creating a social support system that enabled them to feel re-engaged and valued following their stroke. The youngest person in the group explained that she felt misunderstood and devalued by the network of friends she had socialized with prior to her stroke because they failed to understand the changes in her personality brought about by the stroke. For this young woman, moving into a new social context allowed her to regain normalcy. I’ve got a whole new lot of friends. . . . They don’t know what I was like before so they can’t be disappointed in me now. Whereas I feel as though a lot of people who knew me before . . . they’re a little bit disappointed [in me] . . . so I got a whole new range of friends that know me for who I am now and I like that better.

Friendships established following stroke were noteworthy because they seemed to neutralize the negative impact of the stroke to some extent. The individual felt valued, regardless of the stroke-related changes, and they could not be compared unfavorably to their prestroke self.

Re-engaging with Work Unlike the experience of older people with stroke, young people viewed their re-engagement with work as a positive step in their recovery process. The return-to-work transition was used as an indicator of the improvements they had made and how far they had come. Re-entering the workforce was perceived to be a challenge that was highly beneficial, both socially and psychologically, and was an important motivator that contributed to a sense of purpose and improved their confidence. My work gave me something to go to. You know, get out of the house. It was hard, but I did it. It gave me so much confidence. I’ve just started work this week, two days a week, three hours at a time . . . it makes me feel better in myself. Gives me something to do. . . I feel better now that I’m going back to work.

Conditions for a positive return-to-work included supportive and flexible colleagues and a workplace environment that accommodated young people’s


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needs and the consequences of their stroke. The young people valued a supportive work environment that provided them with space, time, and freedom to ease back into their role. I can do a lot more things than I could do last year at work. And he’s [manager] letting me do what I think I can do. So he’s just letting me go. If I can’t do it, that’s good and fine. He’s great, I’m lucky.

However, young people experienced significant challenges as they reengaged with their work environments. The timing of work days, monitoring of energy levels and stamina, and managing social interactions with colleagues were just a few of the issues they faced on their return to the workforce. Interestingly, none of the young people had received formal support or vocational rehabilitation during their transition back to work. In the absence of this support, most young people explained that the return-to-work process had occurred by “trial and error.” I don’t know how many people go back to work [after a stroke], but . . . I virtually monitored my own rehabilitation in returning to work. There’s no one in occupational therapy that can provide me with advice or tips or anything to help me in going back to work. It’s basically been my trial and error in overdoing things. . . . First of all, going back to work was a big thing in going back with all my colleagues. It was sort of difficult that way. But it’s not now. But getting to work . . . I had to really think about driving to work. After my work, did I have enough stamina to drive home? I really had to be very careful and monitor that closely. . . . I deliberately separated my days— Monday, Wednesday, Friday so I had a rest day in between. But then some days I’d work Monday, Tuesday, and I’d work full days. I was exhausted and so I was almost too tired to drive home. . . . There was nobody there to offer me any advice . . . I just . . . had to do it and find out that I over did it, and learn from that mistake.

Re-engaging with work was a positive experience on one hand, but also an isolating one if participants were unsupported in their transition. Furthermore, re-engagement with the workforce was not an achievable goal for all young people. For example, one young man’s stroke-related disabilities precluded him from working (at least at the time of these interviews). However, this did not diminish his need or desire to be actively engaged in meaningful and purposeful activities and roles. Re-engagement in his case focused on expanding his opportunities in other domains (e.g., volunteer work, leisure activities, chores at home and for family), which contributed to his sense of well-being. I am just really happy at the moment coming to terms with my situation. It’s not all doom and gloom, which is good. I’m fairly active. I go to the gym three days a week. I [volunteer] . . . every second Monday for a few hours. . . . And we have a farm which is really good because I can go and help the manager at times if he needs a bit of a hand down there. And we’ve got lots of lawns and gardens to look after. And [spouse’s] mother lives down the road and she’s got a lawn to mow and a garden to look after. So yeah, it’s really good.

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Finding a New “Normal” In describing their poststroke journeys, aspirations, and achievements, young people commonly referred to an initial and dramatic divergence from and slow and gradual return toward what was “normal.” The consequences of stroke compromised their ability to function as they once had; to participate in “normal” activities, roles, and routines; and/or to feel normal within themselves. Stroke disrupted what they experienced as normal in many realms of their lives, often resulting in feelings of loss, grief, frustration, anger, and depression. Their perceptions of normal were usually based on prestroke standards. Normal appeared to be a subjectively defined state or perception of self, and how that self interacted with and functioned within the world. Just not being able to work. . . . Not being able to walk and do all the things I could be doing normally [concerns me most]. I get frustrated with things. . . . I had the stroke and a few months after the stroke, not being able to do what I normally had to do. . . . I got frustrated.

Their perception that they had diverged from this prestroke state of normal was evident, particularly when they compared themselves to others who had not experienced a stroke. For example, in describing the impact of memory issues, one participant explained the distinction between himself and a “normal” person: [Spouse] did a bit of a drawer change on me—with underpants and socks—she changed drawers over. And it’s like holy shit, I keep going to that same drawer all the time [that the socks used to be in]. . . . But a normal person, if someone changed that drawer over that day, in a couple of days they’d [go to the right drawer].

In the period immediately following the stroke, young people typically expressed uncertainty and frustration about this divergence from normal. They were generally hopeful for positive change in the future and believed that over time they would return to something that was as close as possible to their version of normal. Indeed, the interviews revealed that the early poststroke journey was typically characterized by aspirations of returning “back to normal” (e.g., “[I hope to] get back to normal, in other words, as normal as I can”). Returning to normal was often described in temporal terms (e.g., “slow,” “it just takes time,” “bit by bit”), illustrating that young people experienced their recovery process as measured, incremental, and protracted. In later interviews, however, the sense of being back to normal was associated with improvements in functioning (e.g., physical, cognitive) that facilitated resumption of roles and activities. I’m managing really good. And it’s good to be able to do it [manage the household]. I think that frustrated me the most that I couldn’t do anything. . . . The last month or so I’ve been feeling fantastic. Like back to normal, whatever the normal was. Back to that sort of level. . . . It’s good now . . . it feels like you’re normal again.


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Despite positive changes in functioning over time, most young people were faced with the realization that some consequences of their stroke were permanent. “Normal” was then described as a state that could be regained to varying degrees or on a continuum. It was common for young people to reflect their return to “normal” in percentages, with 100 percent being indicative of a full recovery. I feel back to as close to normal as I can be. . . . I feel like I’m back to where I was before I had the stroke. Well not fully back . . . I don’t think I’m 100 percent but I’m up in the nineties and I’m not far away from it.

Some young people described their current state as a “new normal.” They used language such as “come to terms with” and “I’ve accepted,” suggesting that this establishment of a new normal was an integral part of the poststroke journey. I’ve . . . come to terms with everything that has happened. I haven’t got a lot of residual . . . things . . . left. My speech of course. . . . But I’ve accepted that and come to terms with that. . . . It’s just a normal part of my everyday life now.

The new normal was consolidated over time. One young person described the experience as initial passivity (i.e., waiting for improvement) and uncertainty (i.e., wondering how long it would take to get better), followed by realization (i.e., that perhaps a complete recovery of function was unattainable), and finally, a sense of feeling fortunate and grateful (i.e., that residual issues were not more severe). It took me a long time to get to that. I was waiting for, well how long will it be before I get better? And it wasn’t getting better. So I thought well maybe it’s something that I have to accept that that’s what it will be from now on. So . . . I just look at it that I’m very lucky . . . that’s all I’m left with.

For another young person, the consequences of stroke had, over time, become part of what was now normal. These changes had been incorporated into his sense of self. He described how he had become so “used to these disabilities” that he no longer perceived himself as being disabled. My vision has got better. My balance is improving of course with my vision. My coordination is also improving. But I’m not too sure because I think that I’ve just got used to it. . . . You know, people with disabilities, after a while, I don’t think I’m disabled. . . . I don’t think I’m disabled, but I am.

Following the point of realization that some consequences of stroke maybe permanent, the task for the young people appeared to shift from a focus on getting better to one of learning how to manage the new normal. [I want] to manage my memory better. To learn how to retain things better. . . . It’s just a matter of learning how to manage everything. See up until last month I was trying to deal with it all, thinking, “when will it change.” . . . Now I’m coming to the thought “maybe I’m not going to.” So . . . I’ve got

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THE EXPERIENCE: DEFINITIONS, CAUSES, AND CONSEQUENCES to learn to deal with and work my life around it. . . . I’ve just got to now learn how to cope with that and deal with that.

The young people described the importance of (a) making the most of existing abilities, (b) approaching problems and obstacles from different angles, (c) setting achievable goals, (d) developing specific strategies and tools, (e) keeping active in purposeful activities, and (f) maintaining patience and persistence. I’ve been able to work around them [residual issues] . . . with a brain injury . . . you can’t get a false brain. . . . So I put things where I know they are. . . . I put something away, it’s that drawer. It’s that drawer and it’s that drawer all the time. . . . It just takes me longer. But I don’t let it get to me because if I do that, well I’d become withdrawn. . . . So I just had to come at it a different way.

Despite the permanence of some losses, slow and gradual improvements were often still a focus for young people (e.g., “I’m still gradually improving. It’s a slow, gradual thing—it takes time”). In retrospect, young people were able to reflect on their earlier poststroke self as a point of comparison, recognizing changes that surpassed even their own expectations for recovery. Focusing on their earlier poststroke self as a point of comparison enabled young people to feel more positive about their recovery than when they used their prestroke sense of normal as their main point of comparison. I think that I am still . . . making progress. . . . I’ve been thinking back to what I was before [i.e., right after the stroke] and realized how good I am now to what I was then. So I’m still noticing that I’m slowly even picking up that little bit more as time goes by. . . . I didn’t think that I would get back to fully what I was before. . . . But the little that it has left me with is minute to what I could be. So I’m very happy with the way things are. . . . I think as time goes on I’ll probably notice other things.

DISCUSSION Young people who had survived a stroke shared a journey that was characterized by isolation at many levels—isolation in the sense of lack of connection to community, activities, relationships, and roles. They described feeling alone, trapped, and misunderstood. These perceptions of isolation appeared to be influenced by a multitude of factors, including a health care system that failed to meet their age-related needs, a community that lacked the appropriate resources to support younger people once discharged from hospital, and friends and family who did not always understand. Stroke is universally viewed as a condition affecting elderly people, leading to attitudes, stereotypes, and gaps in the community and the service system. The physical impact of stroke was initially a cause of isolation in that young people are striving to regain physical functioning and strength to re-engage with activities and roles. Isolation from work, social opportunities, and community activities created a major obstacle during poststroke recovery. Young people described the need to re-engage at multiple levels to remedy


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the isolation they experienced. Gradually, during the recovery process, young people attempted to reconnect with others and resume activities and roles. However, re-engagement sometimes exacerbated their sense of isolation. For example, when individuals were misunderstood by their own networks of family and friends, this unfortunately led to further isolation within themselves and the breakdown of relationships. Experiences of re-engagement could either reinforce or moderate their sense of isolation and normalization. When re-engagement failed to progress smoothly, young people usually experienced a discrepancy between their experiences of normal and the way they were judged by their social environment. This paradox of normalcy exacerbated their loneliness and isolation and often led them into alternative solutions for re-engagement. On one hand, young people clearly aspired to return to their prestroke sense of normal or at least as close to this state as possible. Sometimes, social feedback reinforced their perception of themselves as normal and this was valued. Most people tell me they don’t even know I’ve had a stroke. My speech isn’t anything that anybody picks up on. They just think it’s a normal thing as in when you get older. So I don’t feel out of place with it. . . . You can’t really tell at all. It’s only when I get really tired I might start to limp a little bit.

In these cases, the hidden nature of stroke-related disability enabled young people to avoid feeling stigmatized or out of place. If people overestimated the severity of their disabilities, they felt isolated and rejected. However, on other occasions, the discrepancy between their private, disabling experience of stroke and the social perception that they were normal or should just get on with life created a sense of isolation due to misaligned expectations and misunderstandings. I find that people just don’t understand what I’ve been through. They think that I’m back to normal and I’m not. As in how I was and what I am now. . . . I know my body can’t cope with the extra that I could do before. I just feel as though a stroke changes someone’s life dramatically, more than what people think. . . . In my case, it’s more, a lot more emotional than physical. . . . Some of my family see that I’m walking and talking okay, but it’s more the emotional with me. It’s hard that’s all, I just wish people would realize more about the emotional aspect of it. . . . I’ve always been the person in the family that listened to everyone’s problems and helped them out. And they still try to do that. But I can’t handle that anymore.

Many of the strategies young people applied to support their re-engagement process and manage their perceptions of normalcy were gained through selfinitiative and trial and error. They took personal responsibility for their own recovery, often in response to a lack of appropriate formal or informal supports to guide them. Resuming roles, relationships, and activities was not straightforward. Young people found that their stroke resulted in the need to manage their own expectations as well as others. They had to develop management strategies that enabled them to function well within their environment. Many of the participants found that they learned from their mistakes.

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Over time, young people reached a point where they referred to a new normal. When they could identify this new normal and value the progress they had made, they were more likely to feel that they had successfully reengaged. There was evidence in each person’s experience that the system had failed to support them in this journey. Being organized for elderly people, the system has clear gaps in regard to these young people (e.g., family-centered support for young families, vocational rehabilitation, role negotiation, psychological support). Health professionals were generally found to be disappointing in that they also failed to understand the implications of having a stroke at a younger age. Family and social breakdown was considered to be avoidable if health professionals could provide education, advice, and support that was specific to younger people. A family-centered approach to stroke rehabilitation that takes into account the well-being of not only the individual but his or her spouse and children as well is supported in the literature (e.g., Visser-Meily et al., 2005). Most important, there was evidence that younger people were actively engaged in their recovery and wanted to take on responsibility. There appeared to be ample opportunity to support self-management for this group. However, in the absence of support for the psychosocial and contextual transitions people of this age were likely to make following a stroke, learning was conducted by trial and error, with errors sometimes being very costly. Adjustment is often described as a process of facing the changes associated with stroke and coming to terms with its impact on all aspects of life. The process of adjustment after a stroke is dynamic and is related to many variables, including the time that has elapsed since onset. The psychosocial literature describes adjustment to stroke in many ways and is replete with stage models of adjustment (e.g., Buscherof, 1998; Sisson, 1998). A common denominator in most of the prevalent stage models of adjustment is the concluding stage of acceptance of disability. However, it has been argued that stage models do not address the complex processes involved in adjustment, and a more appropriate model of adjustment would be cyclical rather than a sequential, time-bound journey through specific stages (Kendall & Buys, 1998). In contrast to these stage models, Nochi (2000) offered a more flexible perspective of coping. This perspective is based not on a process of accepting but rather on one of revising. According to this perspective, individuals do not merely accept their circumstances but revise their self-narratives by “changing the appearance of their past and future or their environments” to accommodate their current circumstances (p. 1797). Similarly, Kendall and Buys (1998) offered a recurrent model of adjustment that emphasized the individual’s task of developing new schema, or “fundamental beliefs and assumptions about the self, others and how the environment works (Beck & Weishaar, 1989, in Kendall & Buys, 1998, p. 17). These beliefs and assumptions “filter and interpret one’s experiences” (Stewart, 1996, in Kendall & Buys, 1998, p. 17). Pivotal to a positive development of one’s poststroke schema, according to this model, is the expansion of opportunities (Newsome & Kendall, 1996) and the development of coping resources, both personal and environmental (Kendall & Buys, 1998). This model of adjustment


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therefore moves beyond the simplistic assumption of passive change over time that typefies most stage models (e.g., Watson & Quinn, 1998). It would seem from the experiences of these six young people that they are active participants in their process of finding a new normal. They wanted to be actively engaged in their rehabilitation and were motivated to find new ways of managing. The rehabilitation system may not be capitalizing on these qualities and therefore may not be serving this population in an optimal way.

REFERENCES Australian Institute of Health and Welfare (AIHW). (2006). How we manage stroke in Australia. AIHW cat. no. CVD 31. Canberra: AIHW. Becker, G., & Kaufman, S. R. (1995). Managing an uncertain illness trajectory in old age: Patients’ and physicians’ views of stroke. Medical Anthropology Quarterly, 9(2), 165–187. Buscherof, J. R. (1998). From abled to disabled: A life transition. Top Stroke Rehabilitation, 5(2), 19–29. Churchill, C. (1998). Social problems poststroke. Physical Medicine and Rehabilitation: State of the Art Reviews, 12(3), 557–569. Faircloth, C. A., Boylstein, C., Rittman, M., Young, M. E., & Gubrium, J. (2004). Sudden illness and biographical flow in narratives of stroke recovery. Sociology of Health and Illness, 26(2), 242–261. Jongbloed, L. (1994). Adaptation to a stroke: The experience of one couple. American Journal of Occupational Therapy, 48(11), 1006–1013. Kendall, E., & Buys, N. (1998). An integrated model of psychological and social adjustment following disability. Journal of Rehabilitation, July/August/September, 16–20. Keppel, C. C., & Crowe, S. F. (2000). Changes to body image and self-esteem following stroke in young adults. Neuropsychological Rehabilitation, 10(1), 15–31. Kersten, P., Low, J. T. S., Ashburn, A., George, S. L., & McLellan, D. L. (2002). The unmet needs of young people who have had a stroke: results of a national UK survey. Disability and Rehabilitation, 24(16), 860–866. Naess, H., Waje-Andreassen, U., Thomassen, L., Nyland, H., & Myhr, K. M. (2006). Health-related quality of life among young adults with ischemic stroke on longterm follow-up. Stroke, 37, 1232–1236. National Stroke Foundation. (2008a). Facts, figures and statistics about stroke. Retrieved February 18, 2008, from www.strokefoundation.com.au/facts-figuresand-stats. National Stroke Foundation. (2008b). How a stroke happens. Retrieved February 22, 2008, from www.strokefoundation.com.au/how-a-stroke-happens. Newsome, R., & Kendall, E. (1996). Expansion rehabilitation: An empowering conceptual framework for rehabilitation following disability. Australian Journal of Rehabilitation Counselling, 2(2), 71–85. Ning, M. M., & Furie, K. L. (2004). Preventing a second stroke in the young. Top Stroke Rehabilitation, 11(2), 40–50. Nochi, M. (2000). Reconstructing self-narratives of people with traumatic brain injury. Social Science and Medicine, 51, 1795–1804. Pilkington, F. B. (1999). A qualitative study of life after stroke. Journal of Neuroscience Nursing, 31(6), 336. Pound, P., & Gompertz, P. (1998). A patient-centred study of the consequences of stroke. Clinical Rehabilitation, 12, 338–347.

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Roding, J., Lindstrom, B., Malm, J., & Ohman, A. (2003). Frustrated and invisible— younger stroke patients’ experience of the rehabilitation process. Disability and Rehabilitation, 25(15), 867–874. Shin, A. Y., Porter, P. J., Wallace, M. C., & Naglie, G. (1997). Quality of life of stroke in younger individuals. Utility assessment in patients with arteriovenous malformations. Stroke, 28, 2395–2399. Sisson, R. A. (1998). Life after a stroke: Coping with change. Rehabilitation Nursing, 23(4), 198–203. Smout, S., Koudstaal, P. J., Ribbers, G. M., Janssen, W. G. M., & Passchier, J. (2001). Struck by stroke: A pilot study exploring quality of life and coping patterns in younger patients and spouses. International Journal of Rehabilitation Research, 24, 261–268. Stone, S. D. (2005). Reactions to invisible disability: The experiences of young women survivors of hemorrhagic stroke. Disability and Rehabilitation, 27(6), 293–304. Swartzman, L. C., Gibson, M. C., & Armstrong, T. L. (1998). Psychosocial considerations in adjustment to stroke. Physical Medicine and Rehabilitation: State of the Art Reviews, 12(3), 519–541. Teasell, R. W., & McRae, M. (1998). The rehabilitation of younger stroke patients. Physical Medicine and Rehabilitation: State of the Art Reviews, 12(3), 571–580. Teasell, R. W., McRae, M. P., & Finestone, H. M. (2000). Social issues in the rehabilitation of younger stroke patients. Archives of Physical Medicine and Rehabilitation, 81, 205–209. Thompson, S. C., Sobolew-Shubin, A., Graham, M. A., & Janigian, A. S. (1989). Psychosocial adjustment following stroke. Social Science and Medicine, 28(3), 239–247. Visser-Meily, A., Post, M., Meijer, A. M., van de Port, I., Maas, C., & Lindeman, E. (2005). When a parent has a stroke. Clinical course and prediction of mood, behaviour problems and health status of their young children. Stroke, 36, 2436– 2440. Wachters-Kaufmann, C. S. M. (2000). Personal accounts of stroke experiences. Patient Education and Counselling, 41, 295–303. Watson, L. D., & Quinn, D. (1998). Stages of stroke. British Journal of Nursing, 7, 631–640.

CHAPTER 5

“Come Sit with Me; Let’s Yarn Together for a Little While”: Resilience Factors in Facing Cardiovascular and Emotional Disabilities1 Lauraine Barlow

I

’ve never had much sickness in terms of illness growing up. My mum hasn’t told me if I had anything major as a child or as a bub. But considering that it wasn’t until 1967 that we, Aboriginals, were accepted as humans—I was born in 1958, so before that I was a nonhuman—I wasn’t even an Australian citizen. Aboriginal babies were not really looked after or treated. The mother, the father, the grandparents would just use their know-how, bush medicine, to try and help a child. Somewhere along the line doctors agreed that, as a child, I contracted or would have been exposed to rheumatic fever responsible for the heart attack that happened in 1992. That’s when I discovered that I had sclerosis and a heart murmur. I was 33 and had successfully climbed Ayers Rock the year before, so I obviously hadn’t realized that there was anything wrong with my heart. I think it would have made a lot of difference if, as an infant or a child, I’d had proper medical care. Most of 1992 I lived at the Prince Charles Hospital. No sooner would they send me home than I would be back in the hospital again with unstable angina. They would then fly me back to Prince Charles Hospital because my arteries kept closing. I’ve had a lot of angioplasties— angiograms where a balloon is used to break through clogs in the heart. I even made the Courier Mail, a local Brisbane newspaper. The paper was interested in Aboriginal women having angioplasty. When I came back and finally had time to spend with my mum, I asked her why we weren’t educated. Why weren’t we informed heart disease ran in our family? She said, “Well it wasn’t spoken about because we never knew.” My father had a massive heart attack at the age of 42—most of his arteries were closed and they had reached the point where they all just burst.

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Doctors had been treating him for years for chest pains due to an accident he had cutting cane with a tractor when he was a young man. The tractor went into a ditch, and he ended up on the ground. At that time, my father had chest pains, so they checked him out and said he must have hurt one of his ribs. For about four or five years, they were just treating him for sore ribs. They didn’t look any further than his ribs to realize that there was something actually wrong with his heart until he died. The evening he got sick and was taken to the local hospital, they had the police up because he was an Aboriginal man they thought was drunk rather than in pain. He had just come home from work, had tea, and then collapsed. It wasn’t until they put the Breathalyzer on him that they did anything for him at all. My memory of my father is of him fighting with the ambulance bloke because he wanted to stay home with his children. They told him to behave himself, otherwise they would get the police. They were there to help him. He said he didn’t want to go; he wanted to stay with his children at home. So maybe my father had a premonition that he wasn’t going to make it. He knew it was his heart. If we were given that information [a history of hereditary heart disease], I wouldn’t have been so stupid with my own life. I wouldn’t have become a party girl, and I wouldn’t have drunk a lot. Yeah, there were times when I would sit in the gutter with my bottle of wine. If I’d known, I wouldn’t have gone that far. I would have realized you know, hey, this is my life I have to look after myself much better. I feel that if my father had been a non-Indigenous man he would have been treated right away rather than have a Breathalyzer performed before he was taken seriously. I asked my mum, “Why didn’t you tell them that dad had problems with his heart?” She answered that they hadn’t known for sure, even though dad had confided to her that he believed something was wrong with his heart. She said to him, “Well, we need to go find a good doctor.” My father wouldn’t go because he had been taken off his parents and placed in an institution, and that’s where he grew up. There he learned some hard lessons. They only spoke, they only opened their mouth to speak, when they were spoken to. If he, or any of the other children, opened their mouth without permission, they were flogged. They were beaten severely. Remember, at that time, Aboriginal children were not human. So it was very hard for my father to ask for help and say, “Something is wrong with me.” He worried about his children. I remember mum telling me, every night he would check on all of us. From the moment we were born, he worried that one of us might become ill. I think his worry stemmed from knowing he would be one of the first to die. After my father died, his brothers and sisters checked themselves for the pains they were all experiencing. . . . Now there is only one uncle who remains—all the rest have died from massive heart attacks. Even with my history, my father’s history, I don’t see myself as having a disability. But there are a lot of people who would argue that because I can’t work—that’s a disability—I can’t work so I don’t contribute to society—that’s a disability. My husband, Edward, believes Australian society, in general, automatically labels people. In his mind, colour, straight up, is a disability.

“COME SIT WITH ME; LET’S YARN TOGETHER FOR A LITTLE WHILE”

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My message is, just because I look different from you doesn’t mean I’m wrong. Just because I am different doesn’t mean I’m wrong. I’m glad that we taught our children that being different doesn’t mean who they are or the difference in their skin colour equates wrongness. I was taught just because I am not the same colour as the kid next door and we are different, doesn’t mean they’re right and I’m wrong. Being different should never be about wrong or right. Edward believes being Aboriginal makes people work extra hard. An Aboriginal can be brilliant, but if he or she is obviously a coloured person Australian society will keep putting him or her under the microscope. One little mistake and they’ll be pointing fingers. My husband thinks that the condition of an Aboriginal having to work harder can be found everywhere in Australia. So what does that mean for what or who is normal? What or who is NOT normal? For me, I would say having a lot of people around. Everybody accepting and learning from each other is normal. When our social worker first met me and first came to this house and saw how many bodies were in this house—she just about freaked. She’s not Indigenous and we’ve taught her a lot since. At the time I said to her, “You’re coming in with your values. You listen to ours and learn about me. When you walk though this door you see too many people.” She asked, “Where do you sleep?” I took her into the bedroom, it was hot, and we have an air conditioner there. We went into the bedroom and she saw a double bed. She saw all these mattresses around, because it’s the only cool room in the house and ’cause we had places for children there. She asked, “What’s this mattress doing here?” Well I said, “That’s for the kids [of family and extended family].” The children weren’t going to sleep out here in the living room; they weren’t going to sleep in the next room. When our social worker saw that, she said, “I’m gonna get on the phone and I’m gonna ring up the Department of Families. You haven’t enough room in this house, you’ve got everybody sleeping in one room.” I explained the children needed comfort and she still objected, “But you’ve got no privacy.” I told her, “Well, there’s a lot of room; we are not worrying about privacy.” I only know what my culture has taught me. When I say culture I mean my family. We grew up, and we got comfort from having a room full of people. That might happen [in mainstream culture] when someone dies, people, family, everyone comes together, but that is nearly all of the time for us in the Aboriginal culture. All of us coming together like that is because more people just means you are loved more. The social worker learned a lot because she could not believe that people lived the way we do. It forced her to look at what makes Lauraine, Lauraine. She had to acknowledge all these other people inform who I am, what I do, and how I live. Roslyn, my social worker, has helped. Would you believe even now, it’s not until we ring up and say, “Roslyn, we need your help!”—only when she’s gone in as a white social worker, have things been done. She’s even gone right up to Cairns. She went on a seminar or something, and she met my mum and my brother, so she’s actually gone to where my family began. She found that she got a lot from visiting my family, my home place. She came

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back and started seeing me as who I really am. Also because I keep on telling her, “Roslyn, don’t make me into you.” You’ve already heard me say that what makes me, me, is my family. When I say family, I don’t just mean my husband and my children. I say everyone, my sisters and my brothers, and their children, my mum. I am also my memories, my good times, my weaknesses, my strengths, my sickness, my illness, my sense of humor, and my faith. I have strong faith in my Creator. I know and really believe that if I keep a positive outlook, no matter how many times I’m knocked down, I’ll still get up. I’ve been knocked down a few times I can tell you! I have not been knocked down because of physical exertion, no, nothing that easy. I’ve been knocked down by my emotions. It’s been emotional—very emotional. I, along with my daughter, who has schizophrenia, am on an emotional journey. See, that’s a whole new journey of learning and I’m thinking, I’m getting too old for this—having to start learning new things. But we’ve got a new person to get to know. I know I can never get back the daughter I had before, but the daughter I have now is exciting to get to know. Underneath we find things we have instilled in her still there. Those are the things that I hold on to because that helps me connect with her and connecting with someone is very powerful. We need to connect. I don’t know if you have noticed, but I am connecting (by constant arm touches)—as connecting is very important. With our social worker, I let her know, “Before I let down my defenses and connect with you, because I have to connect with you, you have to meet me on my level. You have to come down from your big university degree and get down on the grass with me.” I said, “We won’t sit on chairs, we’ll sit on the grass. If you are worried about getting your skirt dirty, well, you may as well just walk out of here because it is important, you need to look into my heart.” Another instance is when I had gone to my younger sister’s doctor, a male doctor, when I first arrived in Brisbane. I wasn’t happy with him because he wasn’t really listening, but I needed to go so I could get medication. He asked if I was sure that these were the medications I needed. I said, “Yes, they are.” I took in my list and an empty packet. I said, “If I don’t have these, I am going to end up in hospital. I’ve been on them; this has been my treatment for the last four years. So I’m not going to start changing things because I’m in a new town and seeing a new doctor.” So he accepted that. When we moved to the Northside, I rang and said that I would like to see a doctor, but I would like the doctor to be female, so it’s Carol now who looks after me. The first thing when I went to see her, I sat down and she said, “Tell me your story, tell me about yourself,” which I did and from there we have learnt together what is the best way to treat Lauraine. We still do that. When I go, she asks, “What’s been happening?” and I don’t just tell her about what has been happening to me, but also tell her what has been happening around me—so that she can treat me to the best of her knowledge. People call it my ill health. I think I would call it a part of my strength. Not that I really want illnesses. Having health problems probably make me more determined. My husband can tell you about that. My eldest son is always saying, “Mum, slow down, what am I going do with you, old girl?” And I say,


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“But I’m not ready to slow down.” My body may be deteriorating, but my mind is still very much alive. As long as I can talk, I may not be able to run fast, but I still can talk fast. I only see my health, my body, deteriorating when I am told about it. I don’t feel it. So I find it very hard to accept limitations and yet somewhere mixed into that I know I have to be realistic. When I know I have had enough, I will admit it. I did tell my physician, “I have reached my limit.” She said, “Wonderful, because you reached everyone else’s last year and you kept on going.” I thought that was excellent the way she phrased that. I think that could be true with other cultures—if anybody wants to treat a person, they really have to look at all the little ties that holds that person, or those people, together. The painting I did might give you a bit of an idea of what I’m talking about. This is my story. It depicts the year 2004. I see myself as a river, but I also see myself as the Nurturer—there in the middle—everybody wants, like a pair of hands, to be around a person. My hands are depicting my story. The bamboo—when I think of bamboo—gives me a sense of security. Growing up, in the north—we lived in those creeks. Bamboo is always along the creek, along the fire. Bamboo, in my piece, is the persecution we Aboriginals share: all the insults, all the many, hurting insults. I say we, my family, put up with a lot. Our reputations are stained and tattered. The Department of Families took my sister’s children. See the teardrops? I must admit, yes, I think I just about flooded my neighborhood at times. I wanted to show something in my art to say this river is flowing, it goes out to sea. It starts from somewhere. The rapids depict many rough times. We were really tossed about—there were times I wondered whether we could survive the rapids. Here we are starting to enter the shallows—see all that brown, that’s mussels. The only time you get mussels is when the tide goes out, and the tide is out many times. In my picture, the river is flowing. This picture— those mussels, that tide, the flowing river—is who we are, an expression of

“Footprints of Memories,” painting. [Lauraine Barlow]

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what has always been kept and nurtured in that river water. There are others, people who have tried to dam this river, tried to stop this river from flowing, tried to stop us from being who we are. The eel—my eel, my husband, Edward—has always been there to keep and, in a way, guard the water for our children and me. Edward provides support, nurturing me. In the Indigenous stories, the eel always keeps a spring—a natural spring—the eel always keeps the water. We have grown up with the old people saying, “If you come across an old eel, leave it there, because that keeps the water there, when it is hot and the water dies down, the eel burrows down in search of water.” You will always find water wherever there are eels; there will always be water, even if you have to dig for it. Edward and I both experienced what a loving mum and dad could be. Our own children—we’ve always told them to be proud of who they are and to never let anyone tell them they are worthless because they are not. We are like the mum and dad of the entire family. Ever since we’ve been together, we’ve had extended families’ children. Every holiday, when our children were young, we had 10 children in our care because we lived out in the bush and that is where the kids wanted to be. Aunty Lauraine and Uncle Edward had exciting things to do, exciting things to see and yarn about. How does a jellyfish swim? A jellyfish takes in water and to propel it forward, it pushes the water out through its body. The children in the family feel like they can come to me and talk to me about their problems. Instead of internalizing, instead of keeping it all in, I have learned how to push those difficulties away. For them and for myself, I have learned that motion—hearing it, but also letting it go. All of that, it’s all in my picture. There’s a group of us Indigenous ladies on the Northside that the social worker looks after, so we all come with our little projects and we are a support group for each other to meet once a month. I like sketching. Sketching black and white with just a pencil. My children are artists, my son and my daughter. All of our children paint; they do Aboriginal art. I showed my painting to my niece when she came up one weekend. She asked, “That’s you in the middle, eh?” I told her it was. She said, “Yes, because everybody wants to come around.” That encouraged me because I feel comfortable with how I’ve used my art to express my insides, and I feel I would like to do a couple more to really put down my journey, our journey (myself, my daughter, my husband, and all of our children), especially as how that journey is now impacted by mental illness. Finding a way to deal with that kind of a sickness is a journey all by itself. I mean, it’s a story with many chapters of its own. In an Indigenous culture, and I guess maybe with most cultures, females are the central figure. Growing up, my grandmother was a very strong person, after that, it was my mother. So we’ve inherited that—my two sisters and myself. My youngest sister though, she left home quite young, so she didn’t have the benefit of listening to her two other sisters and all of our experiences. She decided she wanted to get out on her own. Her values have changed a lot from mine because of that. The same might be said of even my older brother who lives down here. He’s really fitting into a mold that I don’t


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know. He’s very different to the brother that I grew up with, the brother we used to run through the bush with. It used to be that our fun was cutting a coconut in half and playing boats with our share of the coconut shell. We didn’t grow up with material things. We didn’t whine to go to the shops when our parents went shopping to buy the food we needed. My father was a hunter, so we learned more by eating what the bush had to offer. And our toys—it was a novelty to have a plastic toy; otherwise, we made toys from things we had at home. An empty syrup tin, that became a steamroller—I mean we turned [it] into a car. It was like Cinderella with the pumpkin. We used our imagination and we grew up sitting around the fire in a circle always talking. Uncles and aunts sat around, too. My husband’s and my upbringing were similar. Edward’s father is Tableland Yidinji and my father is Coastal Yidinji. Edward is still Yidinji, but from a different area. Both of us know our history. I know mine right back to the first elder of my father’s tribe. I am the fifth generation. It is hard, dealing with the mental illness of my daughter’s schizophrenia. There were times when I knew I couldn’t have concrete, physical support. There were times I just wanted my mother. My need for my mother was so powerful—I really needed to be near her to smell her scent. Just for her to tell me it was going to be all right—and so I had to ring her, often, just to hear her voice, and that had to be enough for me. Doing so, leaning on my mother, I felt that I could then be a good mother to all of my children. Mental illness is considered very shameful. In the Aboriginal community— growing up—I can see all the uncles we had and cousins, that weren’t all there. We had an uncle [with mental illness]—he must have been a very good baby-sitter according to my mum, because she and my father would go fishing and they would leave all of us in his care. There would be no worry that anyone would get in the house, because he would lock the door, sitting on guard with weapons. He wouldn’t sleep until my mum and dad came back from fishing or from wherever my parents had gone. In the Aboriginal community, people with mental illness weren’t exactly shut away, but they were looked after. Many times what couldn’t be explained—old people believed it was because spirits had come down. As it pertains to mental illness with Indigenous people, some of them still do the smoking ceremony. And to understand the smoking ceremony, we’ll have to meet another day!

NOTE 1. Reprinted by permission of Laurraine Barlow.


CHAPTER 6

Disability in Arab Societies Numan Gharaibeh

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isability in Arab societies is a challenging subject for several reasons;1 indexed publications on this subject are few, statistics are limited, the available statistics have questionable reliability, there is variability in definitions and methodology across different Arab countries, the published Arabic literature on the subject is fragmented, and the Arabic literature search engines are still in their infancy. The causes of disability in Arab societies are, for the most part, similar to the rest of the world. However, some features of Arab countries contribute to high disability, including the rate of consanguineous marriages (familial), large family sizes, higher maternal and paternal age, poverty, limited preventive resources, armed conflicts, terrorism, a high rate of accidents, illiteracy, and communicable diseases. This chapter describes the causes and consequences of disability across the Arab states. It demonstrates the role of traditional beliefs as well as the services and legislation that exist in the region.

INCIDENCE OF DISABILITY The Arab states are home to over 331 million people. Given that the prevalence of disabilities in the Arab world would be expected to be at least equivalent to that of Europe and the United States, if not higher, it is likely that an extremely large number of people with disabilities live in this region. However, prevalence rates vary considerably across different Arab countries and have been unreliable for many years. To try to improve the quality of statistics in the Arab region, the United Nations’ Economic and Social Com-

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mission for Western Asia (UN-ESCWA) held a meeting on disability statistics in Cairo in 2002. The recommendations of this meeting included training interviewers to improve quality of data collection, sensitivity training, and better phrasing of questions (El Deeb, 2005). Since this time, some improvement in data collection has occurred. For instance, for many years, prevalence rates for disability in Arab countries appeared to be low in comparison with the international norms. However, more recent data have shown gradual increases over the past decade. For example, Jordan’s official 2001 estimate, reported by the Ministry of Social Development, showed that the percentage of all People with Disability in Jordan was 12.6 percent of the population (Nour, 2005), 10 times higher than the 1994 figure of 1.2 percent (El Deeb, 2005, p. 5). It is likely that this increase reflects improved data collection rather than an actual increase in incidence.

CAUSES AND PREVENTION Causes and prevention are discussed together because of the very close link between them. To prevent disability, one has to prevent its causes; insufficient prevention causes more disability. There are as many universal causes of disability in the Arab world as there are elsewhere in the world. Following are the causes of special concern in the Arab region.

Genetic and Congenital Causes Congenital and genetic disorders are major causes of infant mortality, morbidity, and disability in Arab countries. High rates of marriages between cousins and related extended family members, large family sizes, and high maternal and paternal age are primary reasons for the higher prevalence of genetic disorders in the Arab world. The average rates of marriages between first cousins ranged from the lowest rates in Lebanon—around 12 percent—to the highest in Sudan—close to 45 percent. In Jordan the rate of consanguineous marriages was 39.7 percent (with 32 percent between first cousins) (Khoury & Massad, 1992). In rural North Jordan, it was estimated that 50.6 percent of marriages were consanguineous with 34.3 percent being between first cousins (Al-Salem & Rawashdeh, 1993). Arabs in Israel, Palestinian territories, Iraq, United Arab Emirates (UAE), Kuwait, and Saudi Arabia were all found to have rates up to 30 percent. El-Mouzan, al-Salloum, al-Herbish, Qurachi, and al-Omar (2007) reevaluated the consanguinity rate in Saudi Arabia more recently (sampling during 2004–2005); the total rate was 56 percent and the first-degree-cousin consanguinity was 33.6 percent. There is evidence that consanguinity is declining in at least some Arab societies. In Bahrain, the rate appeared to have declined from around 45 percent in the grandparents’ generation to around 32 percent in 1995, to an estimated 20 percent in 2005. Marriages between first-degree cousins have dropped from 24 percent in 1995 to 12 percent in 2005. However, a Qatari study suggested that the current generation has a higher consanguineous marriage rate, 51 percent, than the previous generation, 40.3 percent. Marriages

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between first-degree cousins were 26.7 percent for this generation and 23 percent for the previous generation (Bener, Hussain, & Teebi, 2007). Kinship marriages are steeped in tribal traditions and more prevalent in the conservative or poor areas of the Arab world. In a Saudi study, al Husain and al Bunyan (1997) found that the most important variables affecting inbreeding were regional background of the family and level of education. Educational level was inversely associated with the rate of consanguineous marriages. Irrespective of current kinship marriage rates, there is high prevalence of genetic disorders affecting hemoglobin, the red blood cell pigment that carries oxygen (hemoglobinopathies, such as thalassemia and sickle cell disease), enzyme deficiencies such as glucose-6-phosphate dehydrogenase deficiency, autosomal recessive syndromes, and several metabolic disorders in ethnic Arabs (Al-Gazali, Hamamy, & Al-Arrayad, 2006). This may be due to remote history of kinship marriages over multiple generations and the limited genetic pool in the interior of the Arabian peninsula (the desert acts as a barrier to the Fertile Crescent to the north—present-day Iraq, Syria, Lebanon, Israel, Palestine, and Jordan). Hereditary causes of deafness in Saudi children were estimated to be 44 percent (Al-Abduljawad, 2002) and 66 percent for infants (Zakzouk, El-Syed, & Bafaeeh, 1993). Internationally, it is estimated that 50 percent of hearing impairment in infants is due to genetic factors (Morton, 1991). Genetic diseases may be responsible for two-thirds of childhood blindness in Arab societies, ranging from 47 percent in Tunisia to 86 percent in Kuwait (Gomaa, 2007). Al-Gazali et al. (2006) noted some progress in genetic screening programs. For example, in Saudi Arabia, a royal decree was passed in 2003 for a mandatory premarital screening for hemoglobinopathies. Prenatal diagnosis and termination of pregnancy are not offered to carrier couples, even though a 1990 religious ruling (edict or fatwa, in Arabic) allows termination of pregnancy in the first 120 days after conception if the fetus is shown beyond doubt to be affected with a severe malformation that is not amenable to treatment. Similar programs exist in other Arab countries such as Bahrain, the UAE, Tunisia, and Jordan. Secondary prevention in the form of neonatal screening to prevent disability or death by early detection and intervention is also becoming more available. For example, the UAE started a screening program for the metabolic disorder phenylketonuria in 1995. Saudi Arabia in 1985 started screening for congenital hypothyroidism (and the UAE in 1998), Jordan started similar programs in some parts of the country in 2006, with the intention of expanding nationally, and the emirate of Abu Dhabi introduced screening for sickle cell disease in 2002, which may spread across the UAE. The UAE and Oman have now established national or hospitalbased registries for congenital abnormalities (Al-Gazali et al., 2006). Education and awareness about genetic diseases and the perils of consanguinity remain extremely important and cost-effective preventive measures.

Poverty and Poor Resources Disability and poverty are locked in a vicious cycle in which one causes the other. Poverty is related to all the causes of disability and may be the most

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important reason for preventable disability across the majority of the Arab world. Poverty is often the reason children are not vaccinated, not educated, do not use enough nutrition, and do not live in hygienic conditions. It is often the reason young couples do not use genetic counseling, and pregnant women receive poor antenatal, perinatal, and postnatal care. Newborns are often not screened for metabolic and other disorders. Arab children who do not receive the proper health care are at higher risk for impairment and disability. Children who are born into poverty or with disability are faced with diminished opportunities and grow up with poor or no education to become uninformed parents who earn very little. Thus, disability and poverty become multigenerational. The poverty in many Arab countries is juxtaposed against the great wealth generated in other parts of the Arab world. Significant poverty is found in Mauritania, Sudan, Somalia, Djibouti, Yemen, and the Comoros. Although Saudi Arabia has the biggest Arab economy by far, the per capita income is ranked below Qatar, Kuwait, the UAE, and Bahrain due to the poor distribution of wealth. There are also areas and communities with significant poverty within countries considered by the World Bank to be middle income, such as Morocco (including the western Sahara), Algeria, Tunisia, Egypt, Syria, Iraq, Lebanon, Jordan, and the Palestinian territories, especially the Gaza Strip. Reducing or eradicating poverty is likely the single most important step to easing the burden of disease and disability in the Arab world, yet it may be the most difficult step. The fewer financial resources that are allocated to prevention, the greater the resources needed for rehabilitation. For example, prenatal vitamins may cost very little compared to the significant benefit in reducing neural tube defects such as spina bifida or vitamin A deficiency blindness. In Egypt, the public sector expenditure on health was 1.8 percent of the gross domestic product (GDP); education received 4.8 percent, whereas social welfare accounted for 23.6 percent of the total public sector expenditure (Japan International Cooperation Agency [JICA], 2002). Expenditure on health as a percentage of GDP is highest was Qatar, Jordan, and Syria at 4.7 percent, but is as low as 1.5 percent in Sudan (World Bank, 2007). In low-income countries and low-income areas in otherwise middleincome countries (the Comoros, Mauritania, Somalia, Djibouti, and Sudan as well as impoverished pockets in Algeria, Egypt, and Yemen), the predominant causes of blindness are poverty-related, such as corneal scarring due to vitamin A deficiency, measles, eye infections of newborns (ophthalmia neonatorum), and the harmful effects of traditional folk remedies (Gilbert & Foster, 2001). These conditions are all preventable with proper nutrition, vaccination, antibiotics, and access to qualified health personnel and facilities.

Armed Conflicts and Terrorism The Arab region has been the stage for armed conflicts since antiquity. Some may argue that the current turmoil dated back to the beginning of the earliest civilizations in the region. It is generally thought to date back to the boundaries created during World War I. The superpowers of the time, Britain


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and France, divided the Ottoman Empire in the Middle East into separate areas of influence through the Sykes-Picot Agreement of 1916. The formal independence of individual Arab states did not occur until decades later. The first to gain independence were Iraq and Saudi Arabia in 1932. Current active conflicts in the region include the Moroccan–Western Sahara conflict, civil conflict and terrorism in Algeria, the Darfur conflict in Sudan, the lingering effects of the Djibouti civil war, the civil war in Somalia, the ongoing war in Iraq, the civil unrest in Lebanon, and the situation in the Palestinian territories including Gaza. Long after conflicts are over, lingering effects from land mines, cluster bombs, and unexploded munitions/remnants of war create disability. In Iraq, it has been shown that the breakdown of community support systems and the limited access to health and rehabilitation services have had a devastating effect on the disabled (Hakim & Jaganjac, 2005). Of the 10 most deadly conflicts in the world in the 1990s, three were in the Arab region—Somalia 1991–1999 was the 3rd deadliest, Algeria 1992–1999 was the 9th deadliest, and the Gulf War 1990–1991 (Kuwait invasion by Saddam Hussein’s forces, and its subsequent liberation) was the 10th deadliest (Murray, King, Lopez, Tomijima, & Krug, 2002). In the first decade of the 21st century, armed conflict and terrorism have cast a long shadow over Iraq, Sudan, the Palestinian territories, Lebanon, Somalia, Morocco–Western Sahara, Algeria, and sporadic terrorist mass killings in Syria, Jordan, Saudi Arabia, and Egypt. In addition, new casualties of land mines and explosive remnants of war were reported as recently as between January 2005 and July 2006 in Algeria, Egypt, Iraq, Jordan, Kuwait, Lebanon, Morocco and Western Sahara, Palestine, Syria, Tunisia, and Yemen (International Campaign to Ban Landmines, 2006).

Accidents Fatalities from road traffic accidents in this region are second only to Latin America, due to poor transportation infrastructure including highways and road conditions, signs and signals, and poor planning and organization of traffic flow. Other factors include the very rapid urbanization and population growth in certain parts of the Arab world and poor enforcement of traffic laws resulting in a disregard for safety. Saudi Arabia and the Gulf states are infamous for speeding motorists, Cairo, Beirut, Damascus, and other big Arab cities for their gridlock. In Middle East and North Africa (MENA) countries in 2000, the fatality rate for road traffic accidents was 19.2 per 100,000 people. This figure suggests there is a high rate of accident-related disability in this region (Hakim & Jaganjac, 2005). Hämäläinen, Takala, and Saarela (2006) indicated that fatal and nonfatal occupational accident rates were also excessive, but were underreported to the International Labour Organization (ILO). Morocco, Tunisia, and Egypt were reported to have the highest occupational accident rate in the Arab world at 36,000 per 100,000 workers per year. However, it is also likely that this rate is inflated due to underreporting of total employment. A corrected estimate was 14,000 accidents per 100,000 workers per year with a fatality rate of 18.1 percent (Hämäläinen et al., 2006).

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Illiteracy, Ignorance, and Lack of Awareness The UN Special Rapporteur on Disability suggested that the two greatest challenges facing People with Disability in the Arab region were, first, the lack of awareness of the rights of People with Disability and, second, the lack of clear and actionable legislation to protect those rights. (Al Thani, 2006). Just like poverty, poor education and lack of awareness may be tied to all the other causes of disability. A study of Saudi parents conducted by Al-Essa, Ozand, and Al-Gain (1997) showed that over 50 percent of the parents had no knowledge of the cause of their child’s disease or its symptoms. Another Saudi study highlighted the fact that 46.2 percent of the mothers of disabled children were “noneducated” and 58.1 percent of the parents of disabled children were first- and second-class relatives. Physicians only assisted deliveries in 52 percent of cases in the countryside and 90 percent in the cities (Al-Hazmi, 1999). Raising awareness is an important step toward better prevention of disability, less stigma, and more resources. However, it is not enough by itself given that changes in traditions, customs, attitudes, and practices will take decades. Literacy rates in almost all the Arab countries are climbing, formal school education is improving, and other avenues to raise awareness are increasing with more exposure to modern media such as radio, television (including satellite TV), cinema, newspapers, magazines, and the Internet.

Communicable Diseases The 22 Arab countries have a wide range of climates ranging from the barren deserts of Libya and Saudi Arabia to the rainforest of southern Sudan, from the lowest point of Earth, the Dead Sea, to the snow-capped peaks of the Atlas Mountains (highest peak is Mount Toubkal in Morocco at 13,671 feet or 4,165 meters). Therefore, there is a wide variety of climate-related communicable diseases in the Arab world. For instance, according to the World Malaria Report (2005), malaria is endemic to Mauritania, Morocco, Algeria, Egypt, Sudan, Djibouti, Somalia, the Comoros, Yemen, Oman, Saudi Arabia, Iraq, and Syria. Sudan has the highest burden with more than 3 million cases of malaria (most recent reported year 2003). HIV/AIDS remains a sensitive issue in some Arab countries because of earlier myths fueled by extremists about the disease being a divine punishment for homosexuality. According to the World Health Organization (WHO) (2007) figures, Sudan has by far the biggest HIV/AIDS epidemic in this region (in absolute numbers) due to being the second most populous Arab nation and having a comparatively high adult HIV infection prevalence rate (1.6 percent in 2005). Some 350,000 people were living with HIV. During 2003, in Djibouti, 1.4 percent of the population was living with HIV/AIDS. HIV infection rate among pregnant women in neighboring Somalia was estimated to be 0.9 percent in 2004. From 1999 to 2004, the Somali area of Hargeisa showed an increased prevalence from 0.7 percent to 1.6 percent, and in Berbera it increased from 0 percent to 2.3 percent. There are also localized epidemics among Libyan prisoners; female sex workers in Morocco, Algeria, and Sudan; and intravenous


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drug injectors in Bahrain, Kuwait, and Oman. Unprotected sex is the main cause of HIV/AIDS in Yemen and Saudi Arabia, where women are usually infected by their husbands who have used the services of sex workers. Among the Arab countries, the highest tuberculosis (TB) infection incidence rates were in Djibouti (762 new cases per 100,000), Sudan (228 per 100,000), and Somalia (224 per 100,000), whereas the lowest rates were in Jordan, Oman, and Lebanon (5, 11, and 11 new cases per 100,000, respectively), and the highest number of new cases were in Sudan (82,694 cases), Morocco (28,088 cases), Egypt (18,479 cases), and Somalia (18,442 new cases)—all figures were for 2005 (WHO, 2007). Although most of the Arab countries have been declared polio-free by the WHO, there were outbreaks as late as 2005 in Yemen, Somalia, and Sudan. The success of eradication campaigns resulted only in one case of polio in Sudan in 2007, and eight cases in Somalia (Global Polio Eradication Initiative, 2008). According to the Centers for Disease Control and Prevention (CDC) (2008), measles vaccination fell below 90 percent in 2006 in Iraq, Yemen, Djibouti, Sudan, and Somalia. Measles incidence per 100,000 population in 2001 was highest in Somalia (33), followed by Iraq (18), and Djibouti and Sudan (12 for both). Morocco, Yemen, Djibouti, Sudan, and Somalia did not provide a second dose of vaccine as part of their regimen (Gaafar, Moshni, & Lievano, 2003). Schistosomiasis, a worm (helminth) infestation, remains a major public health problem in Sudan and Yemen. Egypt used to be rated high endemicity, but the WHO Eastern Mediterranean Regional Office (EMRO) (2006) considered it to be of low endemicity together with Libya, Morocco, Oman, Saudi Arabia, and Syria. Sudan is the third most endemic country in Africa for sleeping sickness, a parasitic infection caused by a protozoa, trypanosome, transmitted by the tsetse fly. Only highly toxic injectable drugs can treat this parasite, and long treatments in hospital are required. A 20 percent drug resistance rate in some areas in southern Sudan poses additional difficulties. Leishmaniasis occurs in the region in different entities, each requiring a specific adapted control strategy for prevention. Visceral leishmaniasis, caused by Leishmania (L.) donovani, regularly causes severe outbreaks in Sudan with thousands of deaths. Cutaneous leishmaniasis, caused by L. tropica, is a major problem in Syria, whereas cutaneous leishmaniasis outbreaks due to L. major continue to appear periodically in desert zones in Egypt, Iraq, Jordan, Libya, Morocco, Syria, and Tunisia (EMRO, 2006). Lymphatic filariasis, commonly known as elephantiasis, is another helminth infestation that is painful and disfiguring. It is caused by the parasitic nematode worms of the family Filariidae. It is endemic in Sudan, Egypt, the Comoros, and Yemen. The current situation is not clear in other countries and is not excluded in Somalia, Djibouti, Oman, and Saudi Arabia. Dengue infection caused by a virus—a single-strand RNA flavivirus— transmitted through the bite of Aedes aegypti mosquito; it is a problem in Sudan, Djibouti, Yemen, Somalia, and the Comoros with outbreaks in Saudi Arabia, Oman, and Egypt. Rift Valley fever is a viral infection of animals and humans. The vast majority of human infections result from contact with the

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blood or organs of infected animals during slaughtering or butchering, assisting with animal births, conducting veterinary procedures, or from the disposal of carcasses or fetuses. Certain occupational groups such as herders, farmers, slaughterhouse workers, and veterinarians are at higher risk of infection. Outbreaks have been reported in Sudan, Djibouti, Somalia, Yemen, Saudi Arabia, and Egypt. Finally, trachoma is a leading cause of preventable blindness in the world. Trachoma is active in most Arab countries, including the most populous countries Egypt, Sudan, Algeria, and Morocco. It is not considered active in Syria, Lebanon, Jordan, the Palestinian territories, Saudi Arabia, Kuwait, Bahrain, Qatar, and the UAE (Polack, Brooker, Mariotti, Mabey, & Foster, 2005). There are, however, bright spots in the Arab countries. For example, Morocco recently introduced a trachoma control program in the five southern provinces covering 25 percent of the total area of Morocco (Chami, Hammou, & Mahjour, 2004).

Disability of Age and Noncommunicable Diseases Among Arab countries, the average life expectancy at birth for males is highest in Kuwait and Qatar (77 years), followed by the UAE (76 years). It is lowest for Somalia (45 years), followed by Iraq (51 years). For females it is highest in Kuwait and the UAE (79), followed by Qatar (78), and lowest in Somalia (45), followed by Djibouti (56). A better measure that captures both premature deaths as well disability is the healthy average life expectancy (HALE), which is the average number of years that a person can expect to live in full health by taking into account years lived in less than full health due to disease or injury (WHO, 2007). HALE was highest for males in Kuwait and Qatar (67) and lowest in Somalia (36). Highest HALE for females was Kuwait (67), and lowest was Somalia (38 years) and Djibouti (43 years) (WHO Statistical Information System [WHOSIS], accessed January 15, 2008). Noncommunicable disease patterns vary with the affluence level and lifestyle in each region. Obesity, which predisposes people to a multitude of other chronic ailments such as diabetes, hypertension, and cardiovascular disease, is higher among females in the wealthy states. Prevalence of obesity among Arab females ranged from 21.7 percent in Moroccan females to 79 percent in Bahraini females. Obesity among males ranged from as low as 13.1 percent in Tunisia to 64 percent in Saudi Arabia (Khatib, 2004). Lack of exercise and dietary habits were important factors. However, weight-related disorders may change over the next decades as there is evidence that attitudes toward body image in the younger generations has begun to match Western attitudes (Rasheed, 1999).

Shades of Stigma To view stigma as either present or absent does the concept a disservice. There are degrees of stigma, a hierarchy of some sort. The Arabic words used to describe disabilities of different sorts are all stigmatizing, but some are more stigmatizing than others. The Arabic word commonly used for disability in


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children is Icaqa, which literally means handicap, hindrance, cause for delay. A male with disability is called Mucaq or Mucwwaq, and a female Mucaqah or Mucawwaqa. They are pejorative words meaning “backward,” “retarded,” “delayed,” “unable to keep up,” or “left behind.” On the other hand, the words used to describe an elder with a disability are cajiz for the male, and cajizah for the female, which literally mean “unable,” which has a more sympathetic connotation. The word shares the same root with cajooz, literally meaning “old,” thus somewhat normalizing the experience for the elderly. There seems to be deep-seated prejudice against those with congenital and hereditary disabilities compared to disability of old age. Furthermore, intellectual disabilities or mental retardation as well as mental illnesses are more stigmatizing than physical/sensory disabilities. Blindness and severe visual impairments are less stigmatizing than other disabilities. Gender gives another shade of stigma, with females being at a distinct disadvantage. These shades of stigma are associated with tribal beliefs and traditions. Arab females with disabilities, especially in the so-called conservative parts of the Arab world, are at multiple disadvantages. They are faced with double jeopardy of marginalization and bias, first for being a female and second for being disabled. When ill, females are less likely to receive medical attention, especially in remote areas. Girls with disabilities are more likely to be institutionalized than boys with similar disabilities. Although children of both sexes are higher risk of being abused, girls are at higher risk still. Women with disabilities are also put at jeopardy economically because traditionally they are tasked with being caregivers, thus depriving them of a chance to advance economically. The vicious cycle of disability and poverty leads to secondary adverse effects on mental health if not secondary mental health disability.

Tribal Traditions A tribe’s honor, reputation, and social standing depend on certain qualities that are thought to be passed on from generation to generation. Genetic defects and congenital disabilities are stigmatizing because they diminish the tribe’s social standing. However, the presence of these conditions is partly due to consanguineous marriages, which tend to make particular disorders and disabilities more prevalent in certain tribes. For example, in northern Jordan, a tribe may have a reputation for albinism, another for spastic paraplegia, a third for mental illness, and a fourth for deafness and muteness. Although tribal traditions are on the decline, in nomadic and rural Arab societies there is a deeply rooted tradition of heightened sensitivity to others’ opinions, criticisms, disapproval and gossip, feelings of shame, exposure, dishonor, and real or perceived disrespect for anything that may take away from “the good name” of the tribe or subtribe. This is accentuated by centuries of overemphasis on the opposite qualities—the tribe’s good reputation, pride, honor, respect, and standing among other tribes. In cities as well as in the more Westernized parts of the Arab world (the Mediterranean effect), individual identity is slowly replacing the communal identity of the tribe. In this context, People with Disabilities are made to feel, explicitly or implicitly, that they are a liability. Negative attitudes toward a child with disability

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are fueled by holding him or her accountable for the adversity suffered by relatives. For example, the prospects of marriage, especially for the tribe’s women, are correspondingly diminished. Even in the “not so traditional” Arab societies, the change in female role from an obedient, passive housewife to an educated, working woman is relatively recent. Among the more educated, the affluent and urban segments of Arab society, the reproductive and domestic roles of women are giving way to roles similar to those found in Western societies. Tribal as well as Islamic teachings put strong emphasis on respecting elders. It is expected and accepted that with aging, a person’s senses may gradually fade away. Therefore, deafness is treated differently for a 70-year-old who has developed deafness as part of aging compared to the “unnatural” deafness of a 7-year-old. Furthermore, the elderly person is given respect due to status. Congenital disabilities interfere with the ability to learn, communicate, and socially interact, making these children seem odd, eccentric, or bizarre. This becomes a vicious cycle of exclusion and alienation, especially in harsh environments where children and adults show no empathy or compassion for a child with disability. There are still some beliefs in the rural and nomadic subcultures that a child’s disability is a curse delivered due to the sin of the parents. Another dimension of tribalism is the strong oral tradition. Poetry, for centuries, was a very important mode of communication until the colonial powers introduced printing press technology (Christian communities in Lebanon and Syria had it before Napoleon’s 1798 invasion of Egypt, but he may be credited for popularizing it). The oral tradition coupled with the sensitivities around reputation and honor made popular a category of classical Arabic poetry called Hija’ poetry. Though it is difficult to translate the word Hija’, it amounts to name-calling, putting down, or verbal assault on rivals. Even esteemed poets engaged in pejoratively describing disabilities and physical attributes of individuals and clans, calling opponents “fat,” “big-nosed,” “long-faced,” “one-eyed,” “lame,” “blind,” “deaf,” or “hunch-back.” Pejorative nicknames remain a common practice, almost a tradition, among nomads and in villages. The name-calling was so prevalent that common surnames reflect a disability such as al-Akhras (mute), al-Atrash (deaf), al-A‘raj (with limp), al-Kaseeh (paraplegic), or al-A‘sha (night blind). Historically, the oral tradition made speech and hearing impairments more problematic in an Arab context compared to blindness and visual impairments. There have been famous Arab icons who were known for their blindness including the famous poets Al‘Asha (7th century) and Abu el-“Ala’ el Ma“arry (late 10th to early 11th centuries) and the 20th-century Egyptian intellectual, Taha Hussein, but there have been no Arab icons who were deaf.

SERVICES FOR PEOPLE WITH DISABILITIES Gender disparities in education start early in Arab societies irrespective of disability. Low literacy rates among the disabled are a direct result of the availability and accessibility of education. Using figures from Syria and


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Bahrain, Nagata (2003) found that females have lower literacy rates compared to males; females who have disability have lower literacy rates than females without disability. There are, however, signs of improvement. According to UNICEF, in one decade (1990 to 2000) the female literacy rate in general has increased in Oman by 24 percent (from 38 percent to 62 percent), Saudi Arabia by 17 percent (from 50 to 67 percent), Libya by 17 percent (from 51 to 68 percent), Sudan by 14 percent (from 32 to 46 percent), Jordan by 12 percent (from 72 to 84 percent), Syria by 12 percent (from 48 to 60 percent), Morocco by 11 percent (from 25 to 36 percent), Egypt by 10 percent (from 34 to 44 percent), the UAE by 8 percent (from 71 to 79 percent), Bahrain by 8 percent (75 to 83 percent), Lebanon and Kuwait by 7 percent (both 73 to 80 percent), Iraq by 3 percent (from 20 to 23 percent), and Qatar by 2 percent (92 to 94 percent). Despite progress in this area, there is still a long way to go. For example, in the southwestern region of Saudi Arabia called Asir (pronounced caseer), there is only one school for the blind (Al-Noor Institute) literally meaning “The Light” Institute for the Blind. The area services more than 1.2 million citizens. The Jordanian National Council of Family Affairs (NCFA) estimated that 92 percent of the children with disabilities are underserved. It also estimated that the Ministry of Education schools (public schools) served only 1.5 percent of estimated school-age children with disabilities (NCFA, 2004). The Moroccan Ministry of Education estimated that only 74,730 disabled children (32 percent of the estimated total) between the ages of 4 and 15 were enrolled in schools. As a result, the government has drafted an action plan for 2007–2012 to improve education for disabled children in the first three grades. The new program will tackle areas such as school design, teacher numbers, communication and assessment methods, and family support, with plans to create 247 classes for disabled children within ordinary schools, including 176 for mentally handicapped children and 71 for hearing-impaired children (Touahri, 2007). Progress is being made in most Arab countries in rehabilitation, eradication of illiteracy, and teaching Braille. Associations for the blind are found in almost every Arab country; they supply blind students with annual and regular financial aids and furnish them with academic printed material in Braille. In high- and middle-income countries, computers and educational aids are provided for free through the work of nongovernmental organizations (NGOs) and charitable groups. In Jordan, associations for the blind were able to secure scholarships at colleges as well as exempting blind students of 90 percent of annual education fees at governmental universities (and 50 percent at private universities); the association pays the remaining 10 percent of the value of education fees at governmental universities. The UN Economic and Social Commission for Western Asia (ESCWA) implemented its first regional training center for Braille computer in the late 1990s and a second phase project for Arabic Braille computer with speech synthesizer was opened in 2001 in Beirut (Nagata, 2003). In Lebanon, Al-Kafa’at (“abilities” in Arabic), a nonprofit organization, provides educational and employment services to individuals with special needs throughout seven centers scattered in and around Beirut, including a school for people with cerebral palsy.

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Saudi television and radio offer a few programs for children with disabilities and their families, but their effectiveness and impact on community attitudes remains unknown (Al-Gain & Al-Abdulwahab, 2002). Kuwait Association of the Blind is a nonprofit organization that provides audio aids and books in Braille as well as transportation for its members. In Egypt, the Taha Hussein Library for the visually impaired (named after the blind Egyptian intellectual and writer) offers a new concept in library services for blind and visually impaired people through technology, enabling them to access all the resources of the library as well as selected Web resources. Arabic audio books for the visually impaired remain very limited. Different Arabic Sign Languages (ArSLs) are used in different Arab countries (AbdelFattah, 2005). Finger spelling using the ArSL alphabet is fairly new and used mainly to spell out proper nouns and words that do not have corresponding signs (Al-Rousan & Hussain, 2001; Assaleh & Al-Rousan, 2005). The ArSL alphabet is not widely used because it requires written Arabic text literacy. Different countries and different regions within countries are moving at different speeds in adopting newer technologies. Satellite dishes are visible on the roofs of many houses in Jordan. Kuwait offers 30 percent discount for People with Disabilities on Internet services, the installation of a free telephone line, and telephone cables at half price when supplied by a preferred provider. Closed captioning in TV and movies has been provided for decades due to the general need for subtitles on American and Hindi movies. However, Arabic content remains widely without captions. Sign language interpreters for the hearing impaired are becoming more common, especially for the news reports in Arabic. Physical rehabilitation services delivered by government-sponsored programs vary significantly across the Arab countries. Djibouti, Egypt, Morocco, and Syria were reported to reach less than 5 percent of the disabled population, whereas Lebanon was reported to reach 20 percent of its disabled population. In Iraq, prior to 2003, there were 11 centers providing rehabilitation services, but most suffered extensive damage in the war. Iraqi capacity to manufacture artificial limbs could reach 5,000 per year if raw material were available (Hakim & Jaganjac, 2005). In contrast, the Kuwaiti government provides the equivalent of US$1,785 toward the purchase of a wheelchair (maximum of three wheelchairs per lifetime) and the equivalent of US$535 toward the purchase of a hearing aid.

Accessibility In Algeria, the government has not mandated accessibility to buildings or government services. In Kuwait, minimum accessibility requirements for all public building types, places of public accommodation, and commercial facilities to meet the parameters during the design, construction, and alteration to meet the needs of People with Disabilities were made compulsory under the law of 1996. People with Disabilities are issued disability cards, which, among other things, entitle their carriers to 50 percent discount on air fares by Kuwait Airways. The Jordanian association provides privileges for the blind community, exempting them and their escorts from 50 percent of


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airfare on Royal Jordanian Airlines. A recent interview by Arab News—an English daily published in Saudi Arabia—of a Saudi man, Abdu, with polio describes the accessibility situation in Jeddah, a large city. Abdu described how handicapped parking or accessible restrooms were absent. The existing ramps were too steep, designed for shopping carts rather than wheelchairs. His neighborhood clinic in south Jeddah lacked an elevator or ramp. He is a member of a disability advocacy group, Willpower Makers, who recently sent municipal officials a list of 174 places in the city that needed better access for the handicapped, including government buildings, hospitals, educational institutes, shopping centers, entertainment parks, hair salons, mosques, hotels, furnished apartments, and pharmacies. The Social Development Administration of Jeddah recently determined that 60 percent of the city’s municipal facilities have access and services for people with special needs (Shalhoub, 2008), indicating some improvement.

Legislation Algerian laws require that 1 percent of the workforce to be reserved for People with Disabilities; however, this requirement is often not enforced. Egypt set a 1 percent employment quota for People with Disabilities in 1975, and this was amended in 1982 to 5 percent. The Egyptian Ministry of Social Affairs licenses NGOs to provide rehabilitation and social services for People with Disabilities (JICA, 2002). In 1993, Jordan enacted the Law for the Welfare of Disabled Persons, which codified the rights of disabled people to be integrated into the general life of society, to receive education commensurate with his/her abilities, to be employed commensurate with capabilities and qualifications, and to engage in sports and recreation (Al-Hussein Society for the Habilitation Rehabilitation of the Physically Challenged, n.d.). Kuwait has legislation prohibiting discrimination against people with disabilities in employment and mandating the accessibility of buildings. Public and private sector institutions hiring 50 people or more are required by law to employ disabled workers at a rate of no less than 2 percent of their Kuwaiti workforce. Lebanon passed comprehensive legislation that codified the rights of People with Disabilities into law and established a National Committee for Disabled Persons tasked with following up on the implementation of that law. The law ensures health care, dental care, and rehabilitation services on the Lebanese government expense. It also mandates building codes to ensure accessibility for the disabled (Lebanese Ministry of Social Affairs, n.d.). Morocco has guidelines on how to deal with People with Disabilities, but these procedures have no legal status. The law does not mandate access to buildings for People with Disabilities. While the Office of the Secretary of State for Families, Children, and the Handicapped attempted to integrate them into society, in practice integration largely was left to private charities (Bureau of Democracy, Human Rights, and Labor, 2006). The Palestinian Law Concerning the Rights of the Disabled (enacted in 1991) guarantees health services that are included in the government health

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insurance free of charge to the disabled individual and his or her family. Pursuant to the provisions of the law, all medical and education equipment as well as aid instruments and transportation means necessary for the registered schools and organizations of the disabled and private transportation means for use by the disabled individuals are exempt from fees, customs, and taxes (World Bank, n.d.). A Saudi Disability Code was issued by a royal decree and was approved by the council of Saudi ministers. According to this code, People with Disabilities and their families are guaranteed medical, preventive, and habilitation services, including genetic counseling, laboratory testing for the early detection of disease, and necessary intervention, registering children who are at risk or born with a disability, and conducting follow-up monitoring of their condition(s) (Prince Salman Center for Disability Research, n.d.). In 1984, Sudan passed the Act on Welfare and Rehabilitation of Disabled Persons, which provides for the establishment of a fund for the welfare and rehabilitation of disabled people to finance the activities undertaken in this field. It also provides for setting up a national council to lay down general policy for the welfare of disabled people and supervise regional councils in Sudan. The act makes provision for measures to promote employment for disabled people. Disabled people may benefit from fiscal exemption measures when purchasing equipment for their work, as well as exemption from income tax. The act provides for financial benefits and facilities in such fields as education, hobbies, communications and medicaments (International Labour Office [ILO], 2004). In Tunisia, legislation gives equal schooling opportunity for all students including those with special needs by 2015. Accessibility legislation still lacking, for example, people who are deaf are not allowed to drive except if it is proven medically that they have 40 percent residual hearing. Sign language interpreters work without licenses (Hakim & Jaganjac, 2005). Yemeni law entitles people with disabilities to right of education, employment, health, and rehabilitation services. A 2002 law established the Disability Fund, which provides financial support to governmental and nongovernmental programs targeting disability. Ministry of Education decree no. 407 of 1999 entitled children with disabilities to enroll in public schools within their vicinity and exempts them from school fees, Accessibility legislation concerning construction codes does not exist (Hakim & Jaganjac, 2005).

CONCLUSION Quality of life for Arabs with disability varies with age, sex, economic status, type and cause of disability, as well as the strength of tribal traditions. The patriarchal tribal tradition in many countries contributes to harsh conditions and stigma for females, children and adolescents, the impoverished, and the less educated. Despite the many difficulties facing Arabs with disability, there have been signs of improvement in Arab countries due to new legislation, preventive measures, increased medical care and rehabilitative resources, access to education, employment opportunities, environmental accommodations, and


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improved building codes. In some countries, there is still a long way to go, but the signs of change are clear.

NOTE 1. “Arab societies” refers to the Arab League’s 22 member states—Algeria, Bahrain, Comoros, Djibouti, Egypt, Iraq, Jordan, Kuwait, Lebanon, Libya, Mauritania, Morocco, Oman, Palestine, Qatar, Saudi Arabia, Somalia, Sudan, Syria, Tunisia, United Arab Emirates (UAE), and Yemen. The complex mix mentioned here includes not only citizens who are ethnic Arabs but also ethnic/ethnolinguistic Afars, Africans, Armenians, Assyrians, Balochs, Berbers (Amazighs, Chawis, Chenwa, Kabyles, Rifains, Saharan Berbers, Shleuhs, and Touareq), Chaldeans, Chechens, Copts, Kurds, Maronites, Persian, Somali, and Turkmen, among others. Religious groups include Sunni Muslims; Shica Muslims; Armenian, Coptic, and Maronite Christian; Druze; Baha’ies; Animists; and many smaller sects of Islam and local African religions. Another term frequently used is the “Middle East and North Africa,” or MENA, which, according to the World Bank, refers to the region that includes 18 Arab countries plus Iran, Israel, and Malta. It excludes Comoros, Somalia, Sudan, and Mauritania.

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68. Retrieved June 4, 2008, from www.dvv-international.de/index.php?article_ id=137&clang=1. Assaleh, K., & Al-Rousan, M. (2005). Recognition of Arabic sign language alphabet using polynomial classifiers. EURASIP Journal on Applied Signal Processing, 2005, 2136–2145. Bener, A., Hussain, R., & Teebi, A. S. (2007). Consanguineous marriages and their effects on common adult diseases: Studies from an endogamous population. Medical Principles and Practice, 16, 262–267. Bureau of Democracy, Human Rights, and Labor. (2006). Morocco report on human rights practices—2005. Retrieved May 31, 2008, from www.state.gov/g/drl/ rls/hrrpt/2005/61695.htm. Centers for Disease Control and Prevention (CDC). (2008). Progress toward measles mortality reduction and elimination—Eastern Mediterranean Region, 1997– 2007. Morbidity and Mortality Weekly Report, 57, 262–267. Chami, Y., Hammou, J., & Mahjour, J. (2004). Lessons from the Moroccan National Trachoma Control Program. Community Eye Health Journal, 17, 59. Eastern Mediterranean Regional Office (EMRO). (2006). Annual report of the regional medical director January 1–December 31, 2006. Retrieved June 5, 2008, from www.emro.who.int/rd/annualreports/2006/chapter1_1.htm. El Deeb, B. (2005). National report on disability statistics in Egypt, 21–23 March 2005. Retrieved June 5, 2008, from www.escwa.un.org/divisions/sdd/events/21mar/ egypt-e.pdf. El-Mouzan, M., al-Salloum, A., al-Herbish, A., Qurachi, M., & al-Omar, A. (2007). Regional variation in the prevalence of consanguinity in Saudi Arabia. Saudi Medical Journal, 28, 1881–1884. Gaafar, T., Moshni, E., & Lievano, F. (2003). The challenge of achieving measles elimination in the Eastern Mediterranean Region by 2010. Journal of Infectious Diseases, 187(Suppl. 1), S164–S171. Gilbert, C., & Foster, A. (2001). Childhood blindness in the context of VISION 2020: The right to sight. Bulletin of the World Health Organization, 79, 227– 232. Global Polio Eradication Initiative. (2008). Wild poliovirus weekly update. Retrieved June 5, 2008, from www.polioeradication.org/casecount.asp. Gomaa, A. (2007). Genetic eye diseases and genetic counseling services in Egypt. Community Eye Health Journal 20, 11. Hakim, G., & Jaganjac, N. (2005). A note on disability issues in the Middle East and North Africa. World Bank document, Human Development Department, Middle East and North Africa Region June 30, 2005. Retrieved June 5, 2008, from siteresources.worldbank.org/DISABILITY/Resources/Regions/MENA/ MENADisabilities.doc. Hämäläinen, P., Takala, J., & Saarela, K. L. (2006). Global estimates of occupational accidents. Safety Science, 44, 137–156. International Campaign to Ban Landmines (ICBL). (2006). Landmine monitor report 2006: Toward a mine-free world. Retrieved May 27, 2008, from www.icbl. org/lm/2006. International Labor Office. (2004). Sudan country profile: Employment of people with disabilities: The impact of legislation (East Africa). Retrieved January 26, 2008, from www-ilo-mirror.cornell.edu/public/english/employment/skills/ disability/download/cpsudan.pdf. Japan International Cooperation Agency (JICA). (2002). Country profile on disability: Arab Republic of Egypt. Retrieved January 26, 2008, from siteresources. worldbank.org/DISABILITY/Resources/Regions/MENA/JICA_Egypt.pdf.


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Khatib, O. (2004). Noncommunicable diseases: Risk factors and regional strategies for prevention and care. Eastern Mediterranean Health Journal, 10, 778–788. Khoury, S. A., & Massad, D. (1992). Consanguineous marriage in Jordan. American Journal of Medical Genetics, 43, 769–775. Lebanese Ministry of Social Affairs. (n.d.). Law no. 220/2000. Full Arabic text available at www.socialaffairs.gov.lb/Files/HandicapLawAR.pdf. Morton, N. E. (1991). Genetic epidemiology of hearing impairment. Annals of the New York Academy of Sciences, 630, 16–31. Murray, C. J. L., King, G., Lopez, A. D., Tomijima, N., & Krug, E. G. (2002). Armed conflict as a public health problem. British Medical Journal, 324, 346–349. Nagata, K. K. (2003). Gender and disability in the Arab region: The challenges in the new millennium. Asia Pacific Disability Rehabilitation Journal, 14(1), 10–17. National Council for Family Affairs (NCFA). (2004). Jordan country study for disadvantaged children. Supported by the World Bank, Jordan. Nour, O. E. H. M. (2005). Child disability in some countries of the MENA region: Magnitude, characteristics, problems and attempts to alleviate consequences of impairments. Paper presented at the 25th International Union for the Scientific Study of Population (IUSSP) Conference, Tours, France, July. Retrieved from iussp2005.princeton.edu/download.aspx?submissionId=50279. Polack, S., Brooker, S. H., Mariotti, S., Mabey, D., & Foster, A. (2005). Mapping the global distribution of trachoma. Bulletin of the World Health Organization, 83, 881–968. Prince Salman Center for Disability Research. (n.d.). Saudi disability code. Retrieved May 31, 2008, from www.pscdr.org.sa. Rasheed, P. (1999). Overweight status: Body image and weight control beliefs and practices among female college students. Annals of Saudi Medicine, 19, 365–369. Shalhoub, L. (2008, January 11). People with special needs want greater public access. Arab News. Retrieved June 4, 2008, from www.arabnews.com/?page=1&s ection=0&article=105547&d=11&m=1&y=2008. Touahri, S. (2007, March 15). Morocco to improve education for disabled children. Retrieved June 9, 2008, from www.magharebia.com. World Bank. (2007). World development indicators database. Retrieved June 8, 2008, from web.worldbank.org/WBSITE/EXTERNAL/DATASTATISTICS/0,cont entMDK:20535285~menuPK:1390200~pagePK:64133150~piPK:64133175~t heSitePK:239419,00.html. World Bank. (n.d.). Palestinian disability law. Retrieved June 1, 2008, from siteresources. worldbank.org/DISABILITY/Resources/Regions/MENA/Palestinian DisLaw.pdf. World Health Organization. (2007). The Global Burden of Disease Project. Retrieved December 12, 2007, from www.who.int/healthinfo/bodabout/en/index.html. World Health Organization Statistical Information System (WHOSIS). Online database, retrieved January 15, 2008, from www.who.int/whosis/en/index.html. World Malaria Report. (2005). Issued by the World Health Organization and the United Nations Children’s Fund (UNICEF). Retrieved December 12, 2007, from www.rbm.who.int/wmr2005/index.html. Zakzouk, S., El-Syed, Y., & Bafaeeh S. A. (1993). Consanguinity and hereditary hearing impairment among Saudi population. Annals of Saudi Medicine, 13, 447–450.


CHAPTER 7

We Can Cry Later: A Story of Surviving Cancer1 Paige Stager

NOT SICK In February 1991, I began to lose weight—a lot of weight. But because I was a normal 16-year-old who always thought she was fat and had a few pounds to lose anyway, I convinced myself that I was in control of the weight loss. I certainly had no appetite at all and was going so far as to dump food out of my bedroom window for the dog to eat so my parents thought I had eaten it. Strangely, this did not worry me. However, I was developing large bruises and had a mild ache in my sternum area as well. Again, I denied that anything was wrong and reveled in being skinny and preparing for my senior year of high school in my hometown of Duluth, Minnesota.

DIAGNOSIS At the start of my senior year, I was 50 pounds lighter than the start of my junior year and had dropped from a size 12/14 to a size 4/6. My mother was quite sure that I was anorexic and was paying much closer attention to what I ate. In addition to this, she made an appointment for me to see the doctor in October for a complete physical. During these months I did notice that I became fatigued easily but didn’t know enough to put all these symptoms together. A couple of days before the medical appointment, Duluth had a massive snowstorm, and the town literally shut down for three days. My appointment was rescheduled for late November and life continued as usual. The day of the new appointment, my mother and I sat and listened as the doctor explained a whole regimen to me regarding eating. Then she started addressing the complaints I had.

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1. Pain in my chest: “Are you a tennis player? Sometimes people who swing their arms back like that get a condition called costochondritis, where the cartilage gets stuck in their sternum.” 2. Weight loss: “Let’s make you a referral to a nutritionist.” 3. Bruising: “Are you sure you don’t play sports?” As we were leaving, the doctor said, “Let’s have you stop at the lab and have some blood drawn.” We left the office at 2 P.M. I went back to school, came home around 3:30 P.M. and my brother, Gayle, said that the doctor had left a message for me. I called the office and was given the runaround for about 10 minutes until the doctor finally came on the line and said, “Paige, your mom is on her way home to talk to you, but we think you might have leukemia.” I hung up the phone and told my brother what she said. We started to cry and hugged each other as we heard my mother come in the back door. She came upstairs, cried with us for a few minutes, and then we were off to the hospital. I was in a room by 5 P.M. At this point, Dr. Dalton, the oncologist, came in and explained that I had CANCER and that I would have a bone marrow transplant and be just fine. He was so confident and so straightforward that I never doubted for a second what he told me. I asked him if I needed to worry and his reply was “Not yet. I will tell you if you need to worry.” And therefore, I didn’t worry—simple as that.

SENIOR YEAR I was allowed to leave the hospital for Thanksgiving. It was a somber event in some ways, but on the other hand, I have such a loud, positive, happy family that being home for a holiday was exactly what I needed. I recall having to go back to school and, of course, word had spread like wildfire about my having “the cancer.” I went to the yearbook room where I was serving my second year on the staff. I got everyone together and very matter-of-factly explained what was up as I saw it. So odd really, because I didn’t feel sick, I didn’t really look sick, and I surely didn’t act sick, especially once I started medication, which brought my white blood cell count into the normal range of 4,000–10,000, down from 389,000. The fatigue was relieved, the bruising was gone, the pain in my chest resolved, and I gained about nine pounds. I was visiting the doctor weekly and having my blood drawn three times a week, but other than that I truly felt like a normal teenager, and my parents were phenomenally great about letting me be that. Graduation approached, and with it, a little more reality than I had been dealing with. We found out that my one biological brother was a complete match for my bone marrow and could be my donor for transplant. At the time I didn’t fully understand what an amazingly lucky thing this was as I guess I always just assumed he would be a perfect match in that naive way that kids have of not worrying about too much. Thank goodness kids have a naive way of not worrying about things! Now it was time to really get things moving. I would finish school and a few days later I was to go down to Minneapolis to start my workup and to

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schedule a date for transplant. It was hard, hard, hard to leave my friends—so hard. At that time my friends were my only link to normalcy, and I had to leave them right in the beginning of summer. At my going-away party, I fell and skinned my knee and foot. I didn’t think too much about it until we were down at the hospital a few days later and I started feeling woozy. It turned out that I had a raging staph infection going on in my leg due to having a low white count and therefore low immunity. They slapped me in the hematology wing of the hospital for two weeks on heavy-duty antibiotics to kill the infection and put off my transplant until July 16.

TRANSPLANT AND BMT WARD We went through the hospital and saw the room that was to be my home for the next seven weeks. There was a small anteroom where visitors would wash their hands before entering, and that led to an air-locked door that went into the room. I had a nice big window, a single bed, a reclining chair, a table, a huge bathroom, a TV/VCR combo, a phone, and a closet. I recall an endless stream of meetings with doctors and nurses and social workers and transplant coordinators and previous survivors and residents and more doctors. All giving me so much information I could not process it all nor remember it all. I do remember, however, the one nameless, faceless doctor with white hair who offhandedly said, as he was moving on to other things, “and you know you won’t be able to have children right?” Eighteen years old I was. Thanks, guys. So we started the process. I had a day of radiation, a day of chemo, two days of radiation, two days of chemo, a day of rest, and then the transplant. This essentially rids your body of all your bone marrow and consequently your immune system, thus, the need for the isolation booth that is your hospital room. I recall not believing I was going to get sick—whoa, was I wrong! Horrible, violent retching that was completely out of control. Diarrhea that was also uncontrollable and constant nausea. I recall not thinking my hair was going to fall out. Wrong again! Fell out in clumps until finally I just shaved my head. Surprisingly, the transplant was the most uneventful part of the whole thing. They took the bone marrow out of my brother’s hips and put it in me right through my intravenous port called a Hickman catheter, located in my chest. All food, medications, fluids, and blood products were given to me this way. Now it was time to hurry up and wait. Every day the staff would take blood samples and see if my body was accepting the transplant or rejecting it. This was accomplished by checking my white blood cell counts. Everyday the count would come back zero, next day zero, next day zero, until one day it said 50! Remember normal is 4,000 to 10,000. Man, did we have a party that day, because it meant that my body was starting to build an immune system with my brother’s marrow. It was a long, arduous process that would not have been possible without my mother. She left her job for the entire summer and lived in Minneapolis. She stayed at the hospital from 9 A.M. to 9 P.M. every day just keeping me busy and was only relieved when Gayle would come and stay every Saturday night with me in the hospital.

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When you are not active, you don’t expend enough energy to sleep, but I was also very lethargic and had no attention span, so my mother had to be very creative. I recall unbelievably supportive family and friends, who visited constantly, stayed with me in my room overnight, sent me gifts, and called me constantly. I recall thinking that if the transplant didn’t work, I didn’t know if I could go through this again. My mother said, “This is what we have to do right now; we can be upset later when it’s over.” I recall snapping at her once, then apologizing, and her saying, “Hey, we don’t say we are sorry in the hospital.” I recall my mother writing all the thank-you notes for me for all the gifts I was given because I just couldn’t get up the energy to do so. I recall my brother shaving his head when I lost all my hair. I recall my dear grandmother who had always offered constant support—she had heard from the doctors that I would be able to have in vitro fertilization someday and therefore put a codicil in her will that would leave me $5,000 toward my first procedure. I recall my father who is 6 feet, 6 inches sitting smooshed between two other people on a Greyhound bus for three hours in order to come down and see me. I recall gripping my sister Julie’s hand so tight I almost broke it as a doctor tried to put an IV in my hand after my catheter was removed. I recall my two-year old niece, Samantha, singing happy birthday to me when she visited. I remember everything that everyone in my family gave up so that I could be well. And then it was over.

SINCE THEN I came home that fall of 1992 to a world that had in many ways passed me by. I was still feeling like I had just graduated yet everyone else was entering college. I had to wear a big duckbill mask and stay inside most of the time to prevent infection. I was still bald. My mother encouraged me to start school at the University of Minnesota, Duluth; I took two classes. This was very important to her and at the time I wasn’t very excited about it, but I see now how good it was for me to be out in the world a little. When I turned 18, my mother filed for me to receive a disability allowance, as I couldn’t work. The disability program paid me $500+ a month. With my $500+ a month, I moved to Minneapolis in 1993 with four other friends from Duluth, and there continued school. I began a whole new life of “not being sick.” I didn’t really think of myself as the “once sick person” except that I knew if I ever got married I wouldn’t have children, and this was certainly a different reality than everyone else I was living with. I also began to resent the label “disabled.” I wasn’t sick. I was a legal adult. All of my friends were working, but I was just taking a couple of classes and not doing anything else. Now, in the eyes of everyone else was my health 100 percent? No way! Yes, I was cancer-free, but the hospital would be following me very closely for the next five years to make sure I didn’t relapse. I began to feel really depressed, and developed some guilt about cashing the disability checks and finally called my mother that fall to say, “I want to stop getting these checks. I am not disabled anymore.” This was a big deal to me. A very big deal. I could most likely have continued receiving this money

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indefinitely, but it would have meant admitting that I wasn’t like everyone else, and at that point I desperately wanted and needed to feel like everyone else. My mother called the state office to tell them that I no longer wanted to receive the disability checks and shortly thereafter I received paperwork in the mail that stated that I was officially “no longer considered disabled by the State of Minnesota.” What a feeling! I began working for the first time in my life, and now I could feel like a normal 19-year-old. Most people would think I was crazy to want to work instead of accept free money, but this whole time was part of the healing process for me. I needed to work for that money. I needed to understand how to budget and save and pay the bills. I needed to learn how to not be sick anymore. It was a long road but I got there.

Paige Stager and her daughter, Claira. [Courtesy of Paige Renee Stager]

In 2001, after graduating as a certified medical assistant and working for two years, my first marriage fell apart. I decided I had had enough of the Twin Cities and decided to move back to Duluth. There I met and married my wonderful husband Tobbi, went back to school to become a registered nurse and lo and behold got pregnant purely by accident. My daughter, Claira, is now three years old. She is happy, healthy, and the joy of my life.

NOTE 1. Reprinted by permission of Paige Renee Stager.


CHAPTER 8

Disability as a Human Perception: Personal and Professional Reactions to American Indian Families’ Narratives about Their Children’s Disabilities R. Cruz Begay, Betty G. Brown, and Roger G. Bounds

“D

isability” or “delay”? The words chosen to describe a condition can influence the healing potential of harmony and balance in individuals’ lives. The diversity of American Indian perspectives on disability and the cultural contexts of family adaptation to living with children with disabilities have been well articulated (e.g., Begay, Roberts, Weisner, & Matheson, 1999; Marshall & Largo, 1999; Nichols & Keltner, 2005; Roberts, 2006). These studies emphasize the critical need for health and clinical care specialists to pay attention to the ways in which families come to an understanding of their children’s disabilities, including the term itself, and how they adapt their lives to regain positions of family harmony. The underlying philosophy guiding this chapter is that disability is a human perception. The chapter is based on 18 personal stories told by American Indian families about their lives with a child with a disability to Dr. Cruz Begay, an American Indian ethnographer. Begay and her colleagues, Drs. Betty Brown and Roger Bounds, reviewed the narratives, and they explored their different reactions to these stories. Universal themes emerged from this process. The discussion of these themes contributes to an awareness of the diversity of American Indian perspectives of children’s disabilities and emphasizes how perceptions about disabilities are constructed. Since disability is a human perception, an understanding of perceptions—both within and external to cultural contexts— should be an integral part of the global communication about disabilities. As researchers, clinicians, and service providers, we have a human responsibility, an obligation, to reconstruct disability. We have an opportunity to learn from Native people that this reconstruction also means healing: not a cure for the condition per se but an acceptance that brings resolution and harmony.

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Although Native perspectives have been described, fewer studies have explored the diversity and significance of the perspectives of the researchers, clinicians, and other service providers themselves. Perceptions guide our view and inform the impact we have on affected children, families, and communities. But is our view necessarily an accurate or beneficial one? We may think ourselves culturally competent and understanding of others’ perspectives. Being culturally competent, however, does not preclude the possibility of one’s own view—consciously or unconsciously—having an impact on the very culture we attempt to understand and serve. Imposition of our own perceptions of families’ challenges can be emotionally costly for the families. Our perceptions, not our different abilities, are the barriers to reconstructing our world and realizing the full potential of harmony in the universe. There is much that we can learn, both from the caregivers and, through them, from the children who are called “disabled.” Parents and caregivers of children with disabilities, whether physical or emotional, are faced with multiple challenges in the form of stressful events, such as hospitalizations, or daily hassles and chronic strains. The perceived severity of their children’s conditions and their strategies for coping with these challenges are dependent on a child’s diagnoses, relationships to others, and the family’s cultural context. Not all coping strategies are used effectively in different contexts, and people generally rely on a variety of coping resources and techniques. These mediators of distress may not always be known to or understood by the majority culture, nor even consciously recognized as coping strategies by those who use them. “The way an experience is recognized and the meaning that is attached to it determine to a large extent the threat posed by that experience” (Pearlin & Schooler, 1978, p. 6). So, too, reactions to an experience differ. It is cultural hubris to believe that others’ reactions are invalid or without meaning. Everyone has reasons for what they do. It is our professional responsibility to facilitate understanding, even from positions outside of the culture. If we fail to do so, our misinterpretations can potentially exacerbate the challenges that these families already experience.

REACTIONS TO NARRATIVES ABOUT AMERICAN INDIAN FAMILIES We examine here our own interpretations of the threat to families’ wellbeing and harmony by exploring our personal and professional reactions to American Indian families’ narratives about their children’s disabilities. If disability is a human perception, as we contend, then awareness of our perceptions as health professionals needs to drive the response and construction of new and healing realities for families of children with disabilities. If these children have been their parents’ gifts and teachers, then these stories shared by struggling but resilient parents is a gift to all of us. They hold a mirror to our own perceptions and to the influence—good and bad—that we can have on those we are trying to help. They are the guide to a cross-cultural understanding and an invitation to a new communication about the meanings of disabilities.

DISABILITY AS A HUMAN PERCEPTION

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We suggest that professionals have a responsibility to help each other, families, and communities to reconstruct disability in a positive and healing way. What follows is a description of our discoveries about our perceptions of disability. We offer other professionals a potential framework for understanding and honoring these families’ experiences from the outside. In the early 1990s, the Navajo Nation organized the Growing in Beauty Program to identify and refer Navajo children with disabilities to early intervention programs. Shortly after this, Cruz Begay, an American Indian ethnographer, collected narratives about children with disabilities in 1994 and 1995. The rediscovery of these narratives in 2008 provided an opportunity to explore the potential impact of professional perspectives on the assessment of these families. These early stories are relevant because the views of the families present those perceptions that were prevalent before there was widespread participation in early intervention programs. This chapter describes a reflective process to investigate perspectives of the severity of disabilities. Three universal themes emerged from this process and guided us to a framework within which to understand the meanings of childhood disability through the families’ lens. Before we can facilitate understanding, we must be aware of our own lens, through which we view others’ experiences. The readers, too, must know who we are and how we have come to this analysis. In the section that follows, we introduce ourselves and our experiences with disability.

THE REVIEWERS Cruz Begay: The Ethnographer and the Collecting of Stories Disabled, defined as “physically or mentally impaired” (Merriam-Webster online dictionary), seemed a sad way to think about children, but I did not realize how harsh these words sounded until I worked as an ethnographer on a project with Navajo families. My journey to real understanding about the harshness of the label of “disabled” for Navajo children began before I interviewed the families; but with each family, I learned not only about their perceptions of disability but about my own as well. I am an American Indian woman, a member of the Tohono O’Odham Nation in Arizona, who married a Navajo man. We lived on the Navajo Reservation for about 20 years and raised our four children there, mostly in the small reservation communities of Kayenta and Shonto. I finished a doctoral dissertation in behavioral science while we lived there, but we did not want to move to a city because we wanted our children to be near their grandparents. I was excited to learn about an opportunity to work as an ethnographer for Utah State University (USU). The Early Intervention Research Institute (EIRI) at USU was running a project that involved ethnographic description of Navajo families, but the institute had difficulty finding an ethnographer who would travel to and live for extended periods of time on the Navajo Reservation. I responded to an ad in the Navajo Times, and Dr. Rich Roberts offered me a position in which I could use my academic training to interview families who had children in early intervention programs which

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EIRI supported. I was eager to do it, but at the same time I felt some concern that the work might be depressing. I did not voice this fear, but my husband insisted that I have a ceremony1 before starting the job, and I have to admit that I felt relieved.

An Incident I Was Unable to Talk About My husband’s parents were also somewhat worried about the work I would be doing. My father-in-law was a well-known medicine man or singer. He and his wife only spoke the Dine’ language and did not read or write it. They had never lived with the modern conveniences that are taken for granted by most people in the United States, such as running water and electricity. They were glad that I was going to have a Blessingway ceremony, and my fatherin-law agreed to provide it. They never said anything negative about people with disabilities and were kind and hospitable to everyone. They lived in a traditional Navajo hogan, or round log home, in a rural sheep camp about 10 miles from the road. We had a hogan near them, but we also had a trailer, with electricity and running water, in the small town of Kayenta. The nearest neighbor to my in-laws was an old woman and her adult daughter who lived about two to three miles away. The daughter was probably my age, but she never went to school, did not speak any English, and dressed in the long full dresses that Navajo women of an older generation wore. I learned that her family did not send her to school because she had a seizure disorder. One time when I was there, the woman and her daughter visited my mother-inlaw and they were drinking tea and talking. Suddenly the daughter had a seizure and fell on the cement floor. Fortunately her mother was able to keep her from hurting herself. After the seizure ended, the woman and her daughter left quickly. My mother-in-law said nothing about it then or later, but I noticed that she took the cup and plate that the daughter had touched and threw them into the trash. I did not ask about it, so I do not know for sure, but I thought that the reason my mother-in-law threw those things away was so that she would not be reminded of the scene when she looked at them. I knew that I was not supposed to mention it.

Harmony My Blessingway ceremony took place one morning in a traditional log hogan with a dirt floor that the family used for ceremonies. It included long prayers and songs. I was blessed with corn pollen and water from a spring. I was told to think good thoughts and to harm no one and that no one would harm me as long as I maintained my good thoughts. I was told that my mind would not be disturbed by bad (unpleasant or unsettling) thoughts and that I would be surrounded by beauty. I would see beauty around me and walk in beauty and goodness every day. This is the way that we are taught is the correct way to be in the world: to feel in harmony with the world around us. Using the words disabled or disability seemed like saying that there is a permanent disharmony in the world of a person with disabilities. I did not use these words when I asked to interview someone, though my reasons were not even conscious to myself. I became more aware of these words one time


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when I called a woman on the phone to set up an interview. The fact that the woman had a phone made her different from most of the others that I interviewed. In several different ways, she quizzed me about the purpose of the interview. I explained the project and that I was interviewing people who had children in early intervention programs. I sensed anger in her voice when she asked why I wanted to interview her particularly. I said something like, “the program is interested in how families accommodate to having a child with a disability.” She was obviously angry at this point and told me, among other things, that she loved her child and would not subject her to being called names and being an object of ridicule. It was at that point that I realized how harsh the word disability sounds. I think now that she was justifiably angry.

Interviewing Families I interviewed approximately 30 families on the Navajo Reservation who had one or more children with disabilities. I visited many of the families several times and joined an informal group that a teacher and some parents had formed to advocate for more services for their school-aged children who had special education needs. The families that I interviewed were not involved in this group because their children were younger, but talking to parents of older children gave me more understanding of the challenges these parents faced. The families’ stories were inspiring, and the more I learned about them, the more I felt inspired and satisfied by this work. When I visited families I was occasionally accompanied by one of the early intervention staff, but I was also alone for many of the interviews. I visited a number of the families on more than one occasion if they did not have time to complete the interview and wanted to continue it. I asked them how their lives had been with their children and just let them talk. I had a small tape recorder and took written notes. The interview tapes were transcribed, but it was often difficult for the transcriber to understand what the person being interviewed was saying and I did not find the tapes as useful as my notes. I found that writing a story about the family soon after visiting was the best way to make sense of my notes and to remember the family. After the grant ended, I stopped collecting and writing stories and eventually found other employment in community health.

Betty Brown: A Reviewer I am a largely urban, middle-class, East Coast white woman—biligana. As far removed from Diné or Navajo culture as I am, however, I have always valued what the Navajo call hózhó: harmony and balance in the universe. In writing about disability, I was increasingly aware how much the majority of our society is missing by viewing disability as an imbalance rather than a different “capability.”

My Experience with Disability I have no children, yet I have experiences with disability. First, I am the child of a mother with a psychological disability whose personal history was

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never discussed and remained unknown to me until I was in my twenties. My husband, too, is partially disabled, so I have lived some aspect of this world all of my life, though I was not always aware of it. Second, I come to this concept of disability with the eye of one who is aware that a perceived lack of a disability, too, is a social construction. I am referring to those disabilities that are hidden, either intentionally or by their very nature, from the outside world: the emotional and psychological factors that dis-able one’s ability to function in some ways that the majority considers appropriate. Third, I believe that all of us, regardless of our levels of abilities, are disabled at some point in our life course by our own perceptions. My mother was one of the most capable individuals I have ever known. In her culture and time, she was not allowed to work outside of the home, so she redirected her passions and talents to volunteer work to help care for others less fortunate. I think it was part of a healing process for her. She had been abused as a child and carried the emotional scars with her in undiagnosed posttraumatic stress. Nevertheless, she courageously put herself in situations that were both challenging and rewarding. Then there is my husband, a naval veteran of the Vietnam War era, whose emotional scars, like those of so many others who served in the military, are not evident from the outside. Despite his challenges, he remains an active human rights advocate, especially for children. He accepts his limitations as they are, and he continues to live what he believes, more than anyone I have ever known. He and my mother, though very different in their disabilities, share a unique appreciation and understanding of how to respond to the label “disabled.” It is a perception that elicits different responses. Both of these special individuals in my life chose to respond proactively and pursue a life dedicated to others. They accepted their difficulties as part of life’s struggle. Their experiences, for me, have been gifts—an invitation to learn. They have been my teachers, just as some of the children in the Navajo stories have been to their families.

Background Training and Perceptions As I come to the reading of the stories of Navajo families and their children with disabilities, I bring a number of preconceptions but also a particular sensitivity to those parts of their stories perhaps untold or unseen. Although I am a registered nurse, my own perceptions of the severity of families’ experiences are based on more than medical diagnoses and physical symptoms. In my assessments of the stories, I found it difficult to separate past history from present—on several dimensions. Caregivers’ accounts of their children’s multiple hospitalizations in early life were, to me, inseparable from my perception of the severity of their current situations. I was also deeply aware of the place of these situations in the broader context of unresolved grief as a part of the historical trauma that has contributed to American Indian family and community disintegration (Beauvais, 2000; Brave Heart, 1998). For many cultures, the past is inextricably linked to the present; ancestral and community history is part of each individual’s own current history. I am all the more in


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awe of these families who can therefore accept their current situations as just part of life’s challenges, see the creative gifts of a child with a disability, and believe in a positive ultimate outcome.

A Reconstruction of “Disability” Despite the severity of the challenges that Native people have and are facing, it seems that these parents of children with disabilities already knew what researchers are just now coming to realize. A particularly important theoretical shift in the disability literature is the increased value attributed to external forces on the construction of disability, including the power of the physician to determine diagnoses that may or may not be helpful to affected individuals (Albrecht & Verbrugge, 2000). Perhaps in part by necessity or by cultural view, some American Indian families in this study have already learned to reconstruct life with a disabled child as a positive experience. Repeatedly, the caregivers here seem to keep the blunt, definitive diagnoses of the medical community at bay and create their own place for hope. As we know from the literature, behaviors, even more than the level of severity of children’s physical or mental health limitations, have predicted parental distress (e.g., Beck, Hastings, Daley, & Stevenson, 2004), and this is usually the case when the stressors are chronic. Charmaz (2000) explains that chronic illness, as opposed to an acute episode or event, requires a “reconstruction of self” and encounters with uncertainty, loss of autonomy and control, stigma and shame, and isolation. It seems that the Native caregivers in these stories have effectively adapted the perceptions of their situations to cope more constructively with their challenges and have tried to find harmony and balance. This has afforded them opportunities to be more fully present with their children in the process of responding to their limitations and family hardships. Longitudinal studies have found that these parent–child relationships are bidirectional, that is, that the child may also benefit from shifts in parental coping. Parents’ positive adjustment to caring for a child with a disability, such as those with spina bifida, for example, improves their children’s behaviors, particularly externalizing behaviors (Friedman, Holmbeck, Jandasek, Zukerman, & Abad, 2004). This in turn can improve parental abilities to reconstruct their lives in positive ways. Accepting the struggle of life as normal, perceiving the child as not only an normal part of that struggle but a gift, and anticipating a better outcome for their children are not only logical but laudable positive adjustments in a cultural context fraught with multiple chronic stressors and stressful life events.

Role of Health Professionals As health professionals in Western medicine, we sometimes rush to impose “the truth” on families of children with disabilities, but is that right or ethical? Some would say yes, as in the case of a mother of a child born with severe cardiac problems who appreciated the doctor’s honesty with her. Others, however, seemed resentful or suspicious of medical professionals’ attitudes or conclusions, either that there was no problem with the child or that the child

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had an incurable illness. The Western biomedical tendency is to flatly and often disrespectfully tell it as it is, yet finding a culturally sensitive and appropriate balance is difficult. How much should medical professionals say? How much should we allow room for hope? If disability is a perception, can we not give parents the medical support they need and also the time and space for a positive relationship with their child? Hardships may come soon enough. Throughout a review of these narratives, I have learned that American Indian families have much to offer us as we try to find the best ways to support them in their life struggles with children who need to respond to the world in different ways. Working with children with disabilities does not mean that we have a lot to teach families; it means that we have an opportunity and a responsibility to learn from them and support them in their struggle. We need to step back, be silent, and listen to the experts before us.

Roger Bounds: A Reviewer I bring the youngest perspective to our narrative. Born in 1968 on a Marine Corps base in North Carolina, I was raised in a very traditional disciplinarian manner. While not considered wealthy, I have never experienced what I would consider real hardship. My personal interests and hobbies have always centered around sports and physical activity. Much of my self-identity comes from personal ability in individual sports. This very likely impacts my personal conceptualization of disability as described shortly. I attended a primarily Anglo-American public school system that also included a significant African American and Hispanic population. This allowed some exposure to ethnic diversity, but this exposure was limited and did not allow for much true understanding of different perspectives. In fact, much of this experience tended to reinforce stereotypes and propagate biases, rather than allow mutual understandings.

My Experience with Disability When I was eight years old, my father died after a four-year fight with cancer. My subsequent developmental years were spent in Texas. During all of these years, I had very little exposure to children with disabilities and no exposure to the American Indian culture. More recently, my stepfather and brother passed away from cancer as well. As I write this and reflect on my own perceptions of disability, I realize that my only personal experience with significant illness has always resulted in death a short time later. I have very limited experience and exposure to prolonged care for a loved one with a disability, therefore, and my perception is likely biased by the fact that significant health care problems always result in death.

Background Training and Perceptions Prior to and during graduate school, I worked as a paramedic. Most of this time was in a busy urban area, but I did spend two years working in a very rural setting. The clinical exposure to children with disabilities I had during this time was limited to acute emergencies that required immediate care or


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intervention. I was not responsible for longer term care provision. With this context in mind, my admittedly narrow and naive personal perceptions of what defines a disability center around physical capability to perform daily tasks. I now find myself teaching in a community health program at a university that serves a high percentage of American Indian students. My teaching experience has primarily been with allied health students who are planning to enter the clinical health care environment. While at this university and in a new culture, I have learned to respect and admire ways of living and understanding that are foreign to my culture and experience. Through this lens I describe what I see and feel as I experience the narratives about these families. I provide my reactions to the stories from my own perspective and attempt to articulate how these narratives have changed me and my ideas about the family impact of having a child with a disability.

THREE PERSPECTIVES ON THE NARRATIVES We have described our three unique perspectives through which we will interpret the narratives. Table 8.1 represents a summary of our three personal perspectives in terms of several primary factors that appear to have an influence on interpretation. Although there are many differences among us, we want to bring attention to and understand the influence of three very specific differences on our perceptions. We use these as a starting point for discussion about the variation on how the concept of disability can be perceived. These three primary themes are exposure to the narratives, exposure to the culture, and clinical orientation. We were able to control exposure to the narratives to a limited extent. As the primary ethnographer that conducted the interviews, Begay has the closest connection to the narratives and the families they describe. Prior to completing ratings of the severity of each case and before beginning the reflective process on how disability might be perceived, she revisited and read each narrative. Brown was not involved in the initial interviews and date collection. She did, however, read each narrative to establish some connection or knowledge about the entire family dynamic prior to beginning our reflective process. Finally, Bounds began the initial reflective activities by completing Table 8.2 prior to reading any of the narratives. In his case, the initial perceived severity is based only on the knowledge of the medical diagnosis or condition. Our reactions are also influenced by clinical orientation (see personal introductions and Table 8.1). We felt that this intentional differentiation of perspectives based on exposure to the narratives was important because it may mirror the differences in perspectives that often occur among various people involved in the care of the child. For example, family members are very close to a situation in terms of actual daily care needs, and they feel the impact of the situation personally. Primary care providers (e.g., local physicians, nurse practitioners, or healers) learn or become aware of the family dynamics as they deliver care or make referrals for the primary condition of the child. Finally, a specialty care provider often has limited exposure to any of the specific family dynamics and makes judgments based on knowledge of

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THE EXPERIENCE: DEFINITIONS, CAUSES, AND CONSEQUENCES Three Unique Perspectives

Reviewer Characteristics

Begay

Brown

Bounds

Exposure to the narratives

Significant exposure: She conducted the actual interviews many years ago and reread each narrative prior to beginning this process

Some exposure: She read all narratives prior to beginning the process and completing Table 8.2

Minimal exposure: He was superficially briefed on the narrative contents, but did not read the narratives before completing Table 8.2

Exposure to the culture

Significant exposure: She is a Native American who married into the Navajo culture and has many years living and working within the culture

Some exposure: Although not a Native American herself, she has several years of working with and within the culture

Minimal exposure: He has only a few years of living near the Navajo Reservation

“Clinical” orientation

Nonclinical perspective: She does not have a clinical background, but has an extensive understanding of Native healing ceremonies

Moderately clinical perspective: She is a registered nurse, but holds a very humanistic and sociological perspective. Her clinical experience involved mostly long-term care

Very clinical perspective: He has several years of experience working as a paramedic. He experience is mostly acute emergent care

the medical condition only. The diversity of our own perceptions, therefore, presents a framework for understanding how disability might be perceived along the entire care continuum.

Discussion of Perceived Severity Table 8.2 describes our initial perceptions of the severity of each case. Each case was subjectively rated on a scale of 1 to 10 (1 = lowest, 10 = highest) to represent each evaluator’s perceived severity of the disabling condition. It is important to note the differences among the three evaluators. It appears that perceived severity of the diagnosis or condition is influenced by exposure to the narratives, the culture, and clinical orientation. Because he had no prior exposure to the narratives before completing Table 8.2, Bounds made his subjective ratings based solely on the physical

Table 8.2

Perceived Severity Perceived Severity Scalea Case #

1

101

2 3 4

203 206 207

5 6 7

208 211 213

8 9 10 11 12 13 14 15 16 17 18

214 220 221 222 223 226 227 228 229 230 416

aLowest

Diagnoses and Conditions Microcephaly, respiratory problems, feeding tube, nonambulatory, nonverbal, seizure medication, possible retardation Down syndrome, cleft palate, heart and lung problems Brain tumor, feeding and breathing tubes Born prematurely weighing 1.5 lbs. Respiratory distress syndrome, neurologic impairment, lack of motor control Fetal alcohol syndrome, attention deficit Prematurity, delay, previous surgery on head (reason unknown to parent) Below age-level development (28 months with behavior and motor development at about 11–12 months) Metachromatic aloek dystrophy, feeding tube, convulsions Small stature, developmentally below age Severe asthma Down syndrome, heart and lung conditions Acute spinal cord infarction Premature, heart condition, developmental language delay Premature, developmental delays, especially language Down syndrome Down syndrome Seizure disorder, developmental delay, shunt Chronic lung disorder, developmental delay, seizures, possible cerebral palsy

perceived severity of child’s medical condition = 1; highest perceived severity = 10.

Begay

Brown

Bounds

10

10

10

7 8 7

10 10 10

6 10 7

5 1 3

8 8 8

5 2 4

10 1 1 5 3 2 1 2 2 4 4

10 8 5 10 10 10 7 7 8 10 8

7 2 4 6 2 5 4 6 6 5 5

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care that is typically required for a person with that condition and the impact of this required physical care on the normal activities of daily living. Without yet knowing the specific circumstances of each family or the contexts in which they lived, his ratings were based on generalized knowledge of the conditions themselves. Brown’s perceptions of the severity of the families’ situations were based on (1) past history, such as children’s multiple hospitalizations early in life; (2) current situation, including medical condition, needs based on diagnosis, family situation and context, accessibility issues, and relationships with medical personnel; and (3) anticipated changes and future need. Considering her work as a neurological nurse and epidemiologist, she was especially aware of the latter stages of these conditions and the requisite role restructuring that would eventually affect these families. In his seminal work on caregiver roles, Pearlin (1989) emphasized the unique impact of role restructuring on caregivers’ lives, as this type of chronic strain reflects emotional demands over time. A positive relationship with a young child may evolve into a more stressful relationship as the child becomes an adolescent (Pearlin, 1989) and require vastly different coping strategies. For example, a young child with Down syndrome is usually very good-natured, but according to the literature, adolescents with Down syndrome can develop behavioral problems that increase caregiver stress and become chronic strains for parents (Hodapp, Ricci, Ly, & Fidler, 2003). Sometimes, behaviors, more than actual physical impairments, can be equally (if not more) stressful for caregivers. Nonvisible disabilities can feel more “severe” than physical limitations and can cause distress, and this awareness guided Brown’s ratings. As noted in the table, Begay’s perceptions were influenced by her sustained contact with the actual families at the time of the interviews and a nonclinical view of their concerns. Most of the information about disabling conditions came from the family members’ own reports. Although Begay had occasion to learn more medical information from early intervention workers or Indian Health Service providers with whom she was acquainted, she did not obtain diagnostic information from medical and service providers about the families. Bounds found that his scores on family impact are consistently higher than those of Begay, a difference potentially related to exposure to the culture. He posited that he may be more sensitive to the cultural differences (e.g., living without utilities) that impact the situation that is considered by others merely a normal part of their life. Brown noted the difference in her scores from those of the other reviewers and believes it related to her background in long-term care. Again, Begay had sustained contact with the families at the time of the interviews, and this contributed significantly to her scoring of perceptions.

THEMES RELATED TO THE PERCEPTION OF DISABILITY While separately reading the stories of the Navajo families, we each identified themes. Despite the differences in our ratings of the families, common coping themes resonated with all three of our uniquely different biases and


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perspectives. Initially we noted nine different themes as a group. However, through triangulation and dialectic processes, we were able to develop consensus that three themes appeared most significantly related to the perception of disability in the stories. The identified three themes included: (1) my child has problems or is ill; my child’s condition will improve; (2) my child is a gift; and (3) life is difficult, and difficulties within families and with children are part of life. The themes present an organizational lens for understanding how 18 Navajo families perceived the impact and severity of a child’s disability. The themes are not presented in any hierarchical order or linear model; however, each theme is presented and then followed by a brief explanation of the discussion of the theme, as it occurred in the stories.

Theme 1: My Child Has Problems or Is Ill; My Child’s Condition Will Improve Parents were consistently optimistic that their child would eventually improve and live a normal life within the family. Even when the child required an extensive amount of care for more than a year, the parents expressed a feeling that the condition was temporary and would improve. The mother of a child with Down syndrome felt that it would take her child longer, but eventually the child would be just like any other child. “I always wondered when he’s going to really start walking. At what age, you know. Two, three—I know it’s going to take time. I just have to have the patience for that.” This mother saw that her need to give constant care, to accommodate the home situation, and remove the wood stove for her child’s needs as temporary adjustments. She was hopeful that her child would mature and be easier to take care of as he grew older. In several families, one member—often the mother—was very worried about the child, but other family members assured her that everything would be fine. A young mother says, “I think he’s small for his age. When I told my mom, she goes, ‘well, you were the same ’cause you were small, and there was nothing wrong with you.’ ” In some instances, the father expressed less worry about the child than the mother. This is consistent with the literature on the differences between mothers’ and fathers’ reactions to children with disabilities. Mothers, more than fathers, have reported more distress in relation to their children’s future (e.g., Hodapp et al., 2003). Families sometimes expressed that they were dismayed by the terms that providers used which denoted a permanent condition, such as “handicapped.” A mother with a two-year-old baby (with possible cerebral palsy) who could not crawl or talk said that the medical providers “were talking about getting her on special handicapped services, and I never thought she was—well, I thought it was just mostly for handicapped kids—and they told me what kind of kids get on the program and this is when I understood that [my child] was delayed and had a problem.” All the families felt that the Indian Health Service providers were mostly very helpful and supportive, but several said that some providers made them feel sad and discouraged. A woman with a baby with Down syndrome said that when she took her child to a well-baby clinic, the nurse who was conducting the exams told her that she could not examine

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the baby and would have to call the doctor to do it. “Sometimes they made it sound like [child’s name] was this big problem.” In some of the narratives, the medical providers were unable to give the families optimistic prognoses, but families found different means to cope with the situation. None of these families lost hope; they all sought alternative diagnoses and the use of traditional medicine. For example, one family was told that their child was likely to die within months. The father thought that the diagnosis may have been wrong and speculated on things that the doctors could have overlooked. The family had traditional ceremonies and prayers to help the child. Like this family, many others reported that traditional ceremonies and traditional medicine helped their children when Western medicine could not. For example, when doctors told one family that their daughter would not be alert, the parents reported that their child’s alertness increased substantially after a ceremony; this surprised the doctors. One mother said that she went to two traditional medicine people, a man and a woman, and that their ceremonies and prayers helped both her and her child. She explained that sometimes when she goes to the IHS hospital, “I just come back with a headache. And the next day I have a headache. But [the medicine man] gives us herbs and he says like a prayer and tells like don’t do this when you’re raising a child.” She explained that she felt good after that. Hope for the improvement of their child was important to all the families, more so than the details of the children’s diagnoses or medical treatment. In two of the families, the caretakers were confronted with getting wheelchairs and braces fitted for their children, and both families were resistant to the addition of these apparatuses for their children. One mother said that this might change the way she felt because she might not be able to think of her child as normal if he were in a wheelchair. Another parent did not want her child to get used to braces because she expected that they would only be temporary and that they would be uncomfortable. Bounds noted that many of the caregivers seemed unaware of many of the specifics of the diagnosis or condition. It appeared to him that they did not have as much need to know or had less knowledge of the actual diagnosis or condition than he would have expected. One father, for example, described “they did something to [the child’s] head,” but he did not appear to know what was done. Bounds perceived this as perhaps a subtle expression of the theme. If the child will get better eventually, the parent may not need to know too many details. Brown interpreted this as a reflection of the families placing higher importance on the spiritual process than the physical condition or biomedical solution that would, by comparison, have little or no meaning. Putting a child in braces or a wheelchair supplants the spiritual with the physical and dissolves hope. Brown also saw this theme in the story of a child who almost died in the ICU, and the mother said, “Then he opened his eyes. Then everybody started singing in ICU and they say, ‘We got hope! We got hope!’ ”

Theme 2: My Child Is a Gift All of the people interviewed in the narratives felt that their children’s problems brought something positive to their families. Changes that families


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were required to make to care for their children were usually seen as positive. In one family, the father had to leave a well-paying job in a city to live with his wife and children to help more with their disabled child. While they had less financial stability, they were happy to be together and felt that the move made them feel closer as a family. It also brought them closer to extended family on the reservation, which was another source of happiness. A mother with a child who had very demanding medical needs said that she considered the child her “gift from God.” Despite the father’s decision to leave and deny any involvement with the child, the child’s condition brought her closer to her mother, nephews, and extended family. The father of another child who required a very high level of care admitted his estrangement from his family by saying, “I wasn’t there for my wife.” Nevertheless, both he and his wife said that their love for their child motivated them to get marriage counseling and that they wanted to provide a stable home for the child. They spoke about the joys of parenting and said their child brought meaning to their lives. The father stated, “I have always heard my elders say that you talk to your kids and you raise them a certain way; to me it was the other way around. He teaches me—seeing him fight every day, seeing him strive just to stay alive.” The father credits his child with getting him started painting and being an artist. Extensive responsibilities for their children, including the mastery of medical equipment such as breathing and feeding tubes, gave many parents a sense that they were more mature, capable, and skilled parents than they had been previously. Those who have a sense of mastery over a situation can better manage their child’s care and are less likely to be affected by the stressful experiences of caregiving (Wheaton, 1999). One father said that his daughter with Down syndrome was a gift “for the reason that God has a purpose for everything.” He appreciated being able to be more involved with her than he had been with his older children in a previous marriage. He said that soon after the baby’s birth, a doctor told him that it was important for his baby to get many experiences when she was young to help her development, and he felt that he was doing a good job with her. Despite multiple sacrifices, parents reported personal growth as a result of having a child with disabilities. A young couple still in high school and enrolled in a parenting program both felt that their child had a positive effect on their lives overall. The child made them happy even though they could not do all the things that other young adults did. When asked how his life had changed since having the child, the father said, “I’m just more mature I guess.” Another father said that things happen for a reason and that having his son taught him to grow spiritually and be a less selfish person. “I’d be up at night with him. It really didn’t matter, ’cause everything that [my child] did, I did right along with him. When he slept, I slept. I just adjusted my whole life around, you know. Nothing else really mattered. But spiritually, you know, I really learned a lot as a person. He taught me a lot about myself.” One mother expressed that having a child with “delays” is like having a baby for a longer time and that she and other parents sometimes felt that having a baby for a longer time was a blessing, “like the kids [other children], they just grow up real fast and you try to baby them. She is still a baby and

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she is still like a year old.” (The child was two years old at the time of the interview.) Another mother felt that her child was a blessing because medical doctors had told her that she would not be able to conceive. When she did conceive and gave birth, the baby was in critical condition but survived. The woman was told that she had blocked fallopian tubes and would need to have surgery if she wanted to try to clear them, but she never had the surgery and did not expect to become pregnant. She said that when she was almost 40 years old, a medicine woman gave her herbs, and she became pregnant after that. In the seventh month of her pregnancy, the mother had serious problems with blood pressure, and the baby had to be delivered early, weighing only two pounds. The mother felt that she was lucky to have her child survive beyond her first few months in the hospital and described seeing her with “about four or five of them [tubes] going through her legs and monitors . . . it was kind of scary . . . it just seemed so hopeless. . . . I didn’t think she was going to make it out of the hospital.” After four months in the hospital, the baby was released, but mother and baby could not return home to their rural home site and had to live with another family member to be close to a hospital. By the time the baby was a year old, they were able to move home and have lived together in a rural camp for almost two years without any serious medical problems since then. The mother said that the child was “the light of my life.” She reported feeling very lonely and sad for years before her child was born because her own mother died. Living in her deceased mother’s house constantly reminded her of missing her mother, but the baby gave her a reason to live again. Mother and daughter had spent almost all of their time together. When the mother went out to chop wood, her young daughter helped her carry the wood into the house. “We just about do everything together; she even likes to go out and feed the horses. Then we come over here and clean the house and wash the dishes. She wants to help, too. And I’m really happy to have somebody to talk to,” the mother said. The early intervention worker told the mother that it would help her daughter’s language delays if they talked together; the mother explained that she was a quiet person herself, but that she made an effort to talk more than usual as she spent time with her daughter. The mother was happy to accommodate for her child’s needs, which she felt were small in comparison to all that the child had given her.

Theme 3: Life Is Difficult, and Difficulties within Families and with Children Are Part of Life In the narratives, the majority of the families accept the difficulties of caring for children with special needs with great equanimity. In the cases in which children were born with Down syndrome, the families accepted that their children would simply develop in their own ways. Serious problems with their children were often downplayed in many families. One mother said her child “likes to cuddle” instead of using the wording that he was a “needy” child. When asked what was wrong with her child, the mother replied “microcephaly, seizure disorders, G-tube, reflux, pneumonia,” and added, “not much really.”


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A teenaged couple felt that since they made a choice to keep their baby rather than let him be adopted, they accepted the responsibility of taking care of him. They admitted, however, that it was more difficult than they had expected. Their own parents (grandparents of the child) began to share in raising the child as well, and this was also accepted as a necessary part of the family’s responsibilities. Grandparents were co-parenting caregivers in several of the families. In one of the families, grandparents were the primary caregivers with permanent guardianship. Reliance on extended family was expected in many of the stories, especially when the child’s parents experienced other problems in their lives. One mother said that her own health problems made it difficult for her to care for her child and that the rest of her family took over the care until she was home from the hospital. Besides a child with problems, common issues that the families encountered included their own illnesses or those of other family members, grief, alcoholism, and difficulty obtaining necessary resources to live. One mother had arthritis and said that she had many aches and pains but did not have time to visit a doctor. Another child’s caregiver had sustained a severe head injury that left her with seizures. In another family, a father’s motor vehicle accident left him with a collapsed lung, and his wife had to help him as well as care for their child, who needed nebulizer treatments three times a day. A couple spoke about their struggles with alcohol abuse and how they had to put their son into a foster care home for several months. The foster care parents were another Navajo family who were ministers of a local church. They helped the parents regain sobriety to care for their child. The parents befriended the minister and reported support and help from the minister and his family in many ways. They said that the minister was especially helpful in encouraging the parents to talk about their problems to gain sobriety. In some of the stories, extended family members were caring for children because of parents’ alcohol problems. In one family, the mother decided to raise her child alone, though she did not get divorced; she lived separately from her spouse because of his drinking problem. Having a home with heat in the winter, running water, and electricity was a source of much concern for many of the families in the narratives. Many families had traditional or small self-constructed log or plywood homes without electricity and running water. Wood-burning stoves provided heat for many of the families, and some of the stoves were constructed of metal water barrels. In the winter, several families put blankets over doors and windows to keep out the cold.2 Often the care of the child required utilities. One family, for example, needed to move to a trailer park away from their extended family’s “camp” to have access to running water, but the family was unable to pay for the rent of the trailer and the space.3 Another family, consisting of a woman and her adult daughter, three preschool children, and two older children, lived in a small, one room travel trailer with an noninsulated, dirt-floored extension built on to it. They wanted to have a ceremony for the child but were unable to pay for it. Some families who lived in trailers were unable to repair broken windows and covered them with plywood and cardboard. Extended families living together under the same roof were common.

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Poverty was an issue that many families faced. Many of the people interviewed in the narratives expressed worries about finances such as the woman who said, “It puts me down when I think about those stuff [bills and needed repairs], and sometime I feel sorry for my husband. . . . We still don’t have extra money for the kids and he’s the only one working and that.” Even though the IHS paid for most of the treatment for the children, families needed resources for other expenses. In several of the narratives, children were airlifted to hospitals off the reservation for care in large cities, and their families had few resources for travel to be with the children. In one narrative, a mother who was breastfeeding her child was able to stay at a Ronald McDonald House (corporate-sponsored charity) in Phoenix. Her husband and other children wanted to join her but could not afford the drive. The mother said she had no money to eat after getting there, and was able to get $20 emergency help from social services, but the $20 did not last for the two months that her child was hospitalized. The extended family at home on the reservation raised money for the mother to travel home, but she had to leave her child at the hospital. When she returned home, she found that her mother and daughter had been in a car accident and said “I was just crying and having a hard time.” Her husband was laid off from a construction job and was told that he could get unemployment benefits, but he was not able to look for work because he did not have gas money to drive to the businesses which were located about 50 miles away from the reservation. Several families in the narratives were still grieving for loved ones, usually other family members, while they were caring for their child. A young mother had a stillborn baby who was suffocated by the umbilical cord; shortly after that tragedy, her own mother and younger brother were killed in an automobile accident. Subsequently, she gave birth to the multiply handicapped child and said that she was so depressed that she was barely able to take care of herself. A grandmother, who was caring for her daughter’s child, was grieving because of the estrangement she felt from her daughter who had left the reservation to live in a city. In two families, other children died, and the family had to deal with that grief while caring for their children who had disabilities. Families learned to cope with the difficulties in their lives in many ways. For the families that were interviewed, spiritual support and traditional ceremonies helped the families feel more able to deal with all of the issues in their lives. Support was commonly sought for a child’s illness and developmental problems, but often families reported that the ceremony or prayer helped them cope with other problems as well. A couple explained, “Before [the ceremony], we were going wild, saying ‘why, why, why’, but after, our minds were focused.” This couple had intended to have a geneticist do tests to determine if there was a genetic reason for the birth of their Down syndrome baby. After the ceremony they said, “It doesn’t really matter now.” Another couple reported that having ceremonies as well as belonging to a Christian church group helped them feel more peaceful. The majority of families participated in more than one kind of spiritual practice, such as Navajo traditional ceremonies, Native American Church ceremonies, and Christian and other spiritual organizations.


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CONCLUSION When working with families who have children with disabilities, should a service provider employ the term “disability” or “delay”? The Native families’ terminology and perspectives should be our guide to support them as they regain harmony and balance in their lives. From our three very different interpretations of the threat to these families’ harmony and our personal and professional reactions to their narratives about their children’s disabilities, we discovered how disability itself is a human perception. These families found hope in their children’s diagnoses, believed that their children were gifts, and accepted the challenges of caregiving as they did the multitude of other hardships in their lives. It is we, the health professionals, who must examine our own perceptions. We must be culturally aware of what we bring to these relationships if we expect to interact effectively with families facing the challenges of life with a disabled child. In this chapter, we offer other professionals, families, students, and community members a potential framework for understanding families’ experiences from the outside. Lessons learned from this American Indian approach can and need to be an integral part of the global communication about disabilities. If disability is a human perception, then we have a human responsibility, an obligation, to reconstruct disability and bring healing—that is, in their view, not necessarily a cure for the condition itself but an acceptance that brings resolution, balance, and harmony—hózhó.

NOTES 1. A ceremony is a native ritual that is an important part of spiritual practice. 2. Unlike southern Arizona, the northern part of the state and the Navajo Reservation experience snow and freezing temperatures in the winter. 3. When we refer to a family “camp,” we are referring to rural areas where families graze sheep and family members have lived for many generations. For the families interviewed, most of these areas do not have access to utilities.

REFERENCES Albrecht, G. L., & Verbrugge, L. M. (2000). Experiencing chronic illness. In G. L. Albrecht, R. Fitzpatrick, & S. C. Scrimshaw (Eds.), Handbook of social studies in health and medicine (pp. 293–307). Thousand Oaks, CA: Sage. Beauvais, F. (2000). Indian adolescence: Opportunity and challenge. Adolescent Diversity in Ethnic, Economic, and Cultural Contexts, 10, 110–140. Beck, A., Hastings, R. P., Daley, D., & Stevenson, J. (2004). Pro-social behavior and behavior problems independently predict maternal stress. Journal of Intellectual & Developmental Disability, 29(4), 339–349. Begay, R. C., Roberts, R. N., Wiesner, T. S., & Matheson, C. (1999). Indigenous and informal systems of support. In T. V. Fletcher & C. S. Bos (Eds.), Helping individuals with disabilities and their families (pp. 79–94). Tempe, AZ: Bilingual Review/Press. Brave Heart, M.Y. H. (1998). The American Indian holocaust: Healing historical unresolved guilt. American Indian and Alaska Native Mental Health Research, 8(2), 56–78.

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Charmaz, K. (2000). Experiencing chronic illness. In G. L. Albrecht, R. Fitzpatrick, & S. C. Scrimshaw (Eds.), Handbook of social studies in health and medicine (pp. 277–292). Thousand Oaks, CA: Sage. Friedman, D., Holmbeck, G. N., Jandasek, B., Zukerman, J., & Abad, M. (2004). Parent functioning in families of preadolescents with spina bifida: Longitudinal implications for child adjustment. Journal of Family Psychology, 18(4), 609–619. Hodapp, R. M., Ricci, L. A., Ly, T. M., & Fidler, D. J. (2003). The effects of the child with Down syndrome on maternal stress. British Journal of Developmental Psychology, 21, 137–151. Marshall, C. A., & Largo, H. R. (1999). Disability and rehabilitation: A context for understanding the American Indian experience. Lancet, 354, 758–760. Nichols, L. A., & Keltner, B. (2005). Indian family adjustment to children with disabilities. American Indian & Alaska Native Mental Health Research: The Journal of the National Center, 12(1), 22–48. Pearlin, L. I. (1989). The sociological study of stress. Journal of Health and Social Behavior, 30(3), 241–256. Pearlin, L. I., & Schooler, C. (1978). The structure of coping. Journal of Health and Social Behavior, 19(1), 2–21. Roberts, R. N. (2006, July). Early childhood services and supports in the context of cultural community psychology. Paper presented at the 18th International Congress of the International Association for Cross-Cultural Psychology, Spetses, Greece. Wheaton, B. (1999). Social stress. In C. S. Aneshensel & J. C. Phelan (Eds.), Handbook of the sociology of mental health (pp. 277–300). New York: Kluwer Academic/Plenum.

CHAPTER 9

Traumatic Brain Injury and Disability as a Consequence of Assault: Focus on Intimate Partner Violence Rosalie J. Ackerman and Martha E. Banks

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rain injury is a frequently overlooked consequence of interpersonal violence. There is little literature about brain injury related to the short- and long-term consequences of assault. Recent research has revealed that violence inflicted in intimate partner violence often include injuries to the head, face, and neck, putting those victims at high risk for traumatic brain injury (TBI). Victims of interpersonal violence experience both psychological and physical trauma, but most treating professionals focus exclusively on one or the other. It is critical to consider both aspects when treating clients and developing public policy. This chapter provides an overview of the types of injuries received by victims of intimate partner violence. Attention is given to the need for accurate assessment to refer victims for appropriate treatment. Much of the literature on injuries sustained in intimate partner violence focuses on depression, self-esteem, posttraumatic stress disorder (PTSD), dissociation, and adjustment. Lacking in the research is attention to additional problems created when the victim sustains a TBI as a consequence of the assault. The reason for the focus on TBI is that not only is this a disabling condition that impacts the victim, but it can also result in inability to maintain employment and other duties, and in the worst situations, the need for personal assistance because the victim is no longer able to manage her own needs.

NATURE OF INTIMATE PARTNER VIOLENCE INJURY It is important to consider the ways in which injuries are inflicted on victims of intimate partner violence to understand how traumatic brain injuries are

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sustained. Banks (2008) observed that TBI can be a consequence of being hit in the head with fists or other objects, having one’s head pushed against a hard object such as a floor or a wall, violent shaking, or attempted asphyxiation. Recent data reviewed by Plichta (2004) suggest that between 81 percent and 94 percent of women seeking emergency department or primary care from physicians have facial injuries. It is difficult to seriously injure the head or face without simultaneously injuring the brain. Sheridan and Nash (2007) examined the mechanisms associated with blunt trauma–related injuries, everyday household objects used as weapons, sexual assault, biting, burning, hair pulling, and strangulation in cases of intimate partner violence. Strangulation involves neck muscle constriction, loss of oxygen to the brain, unconsciousness, asphyxiation, and brain tissue damage. Strangulation accounts for at least 27 percent of brain injuries in women victims of domestic violence and is not seen at all in accident survivors (Valera & Berenbaum, 2003). White and Smith (2004) also found that victims of domestic violence were often strangled. Despite evidence that more than 80 percent of women victims of intimate partner violence, seen for medical treatment of violence-related injuries, have sustained facial injuries (Petridou, Browne, Lichter, Dedoukou, Alexe, & Dessypris, 2002; Rennison, 2003: Tjaden & Thoennes, 2000), the possibility of TBI is often overlooked (Ackerman, 2004; Ackerman & Banks, 2003, 2006; Banks & Ackerman, 2002, 2006; Jackson, Philip, Nuttall, & Diller, 2004; Valera & Berenbaum, 2003). Brain injury leads to premature illnesses, diseases, unemployment, other disabilities, and early death (Thurman, Alverson, Dunn, Guerrero, & Sniezek, 1999). Historical perspectives on mild TBI did not acknowledge brain plasticity and/or rehabilitation; yet rehabilitation might provide a necessary foundation for a client to be able to benefit from traditional psychotherapy (Brewer, Metzger, & Therrien, 2002). PTSD and borderline personality disorder are diagnoses frequently given to women who have experienced mild TBI (Ackerman & Banks, 2006; Banks & Ackerman, 2006). Banks (2007b) described different types of domestic violence, including disability-related sexual abuse, abuse in disability-related settings, and abuse related to helping relationships. Disability-related sexual abuse includes spousal rape and forcing sexual activity in return for help. The latter can be perpetrated by anyone in a caregiving relationship with a woman with a disability. Abuse is sometimes related to disability-related settings. In such settings, sexual abuse can occur under the guise of provision of health care. This is obviously an unethical practice, as health care providers are taking advantage of people unable to defend themselves. For women, there is also a lack of protection from males living in inpatient settings; abuse is discounted or excused as “symptom” of the males’ disabilities (McCarthy, 1998). The practice of such discounting is also unethical. When we think about abuse related to helping relationships, rough handling also comes to mind. Women with disabilities who require physical assistance often have poor balance and can easily be dropped or pushed in a manner that results in head injury. During sexual assault, at least 35 percent of victims were slapped, hit, kicked, bit, choked, held under water, hit with an object, or beaten (Tjaden & Thoennes, 2006). People in same-sex abusive relationships reported being

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run off the road, hit by thrown objects, prevented from sleeping, slapped, forced to drink alcohol, kicked, and pushed into traffic (GLBT Domestic Violence Coalition & Jane Doe, 2006). Victims of such abuse are at risk for TBI.

HEAD INJURY AND TBI AS A CONSEQUENCE OF INTIMATE PARTNER VIOLENCE TBI is a serious and frequently undiagnosed consequence of intimate partner violence. Often, diagnosis of mild TBI is not made, even though a woman had an obvious head injury (e.g., fractured facial bones, broken teeth, ruptured eyeballs, sudden hearing loss) or has been unconscious after domestic violence. There is no positive neuroimaging technique (e.g., X-ray, CT scan) that supports a diagnosis of mild TBI (Ackerman, 2004; Ackerman & Banks, 2006). A major problem is that many health professionals, including those who work with victims of intimate partner violence, have not received training about brain function and treatments to heal injured brains. Misdiagnoses and omission of diagnoses are significant for women with TBI (Ackerman, 2004; Ackerman & Banks, 2003; Banks, 2007a; Jackson et al., 2004; Sterr, Herron, Hayward, & Montaldi, 2006). Concussion, postconcussion syndrome, and organic personality disorder are diagnoses that acknowledge injury to the brain, whereas dissociation, borderline personality disorder, and PTSD do not acknowledge or consider TBI as a causative factor (Ackerman, 2004; Ackerman & Banks, 2002, 2003, 2006; Ackerman, Banks, Farley, & Sikora, 2003; Busch & Alpern, 1998; Cox et al., 2006; Ferraro, 2002; Gagnon, Bouchard, & Rainville, 2006; Kraus et al., 2005; Kyriacou et al., 1999; Morton, 2004; Petridou et al., 2002; Sterr et al., 2006; Valera & Berenbaum, 2003). These symptoms are also often complicated by substance abuse, which further clouds the diagnostic picture. The severity of TBI and the severity of partner violence are strongly related to general distress, depression, worry, anxiety, and PTSD symptoms (Valera & Berenbaum, 2003). Often, when people think about TBI, they think of serious motor vehicle accidents or falls from high places. With closed head injuries becoming more common (e.g., as a consequence of bombs in the war in Iraq), more people have begun to understand that brain damage can occur without the skull being pierced or broken. People are aware of shaken baby syndrome but have seldom considered that victims of intimate partner violence can sustain similar damage to the brain. Many people know about severe brain damage, characterized by an extended period of unconsciousness or amnesia. Our focus is on the mild TBI, often referred to as postconcussive syndrome (Ackerman, 2004; Banks, 2007a; Sterr et al., 2006). Mild TBI generally involves a brief change in mental status or consciousness immediately following the actual injury. However, there is subsequent brain swelling as the body attempts to heal small tears in the brain tissue. A significant literature documents the strong association between TBI and other symptoms of having been battered. For example, battered patients experienced more face, head, and neck injuries than nonbattered emergency

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room patients. Muelleman, Lenaghan, and Pakieser (1996, 1998) compared injuries sustained by battered women and other patients in emergency departments. Battered women had more facial (51 percent versus 11 percent), head (23 percent versus, 6 percent), thorax (20 percent versus 12 percent), abdomen (12 percent versus 1 percent), and neck injuries (22 percent versus 0.1 percent) than other patients. The other emergency room patients had primarily spine (23 percent compared to 14 percent) and leg (32 percent compared to 18 percent) injuries (Muelleman et al., 1996). In Greece, Petridou and colleagues (2002) found differences not only between unintended injuries and those inflicted during intimate partner violence but also between the percentages of injuries sustained by men and women. TBI from domestic violence was sustained by women at a rate that was twice that of men (18 percent versus 8 percent). Rates were comparable across men and women and considerably lower among people injured accidentally (5.5 percent). Accidents accounted for about the same percentages of injuries to arms and legs as intimate partner violence. It is important to note that the severity of the injuries, particularly the skull and facial injuries, were not reported. However, the significant difference in TBI suggests that the skull and facial injuries sustained by women were more severe than those sustained by men. In the Kyriacou et al. (1999) sample of 256 women, 37 percent had TBI, 49 percent had facial injuries, and 15 percent had neck injuries. Some women had more than one injury. Thirteen women had loss of consciousness, and one had a depressed skull fracture. Two women had ruptured eyeballs, and two had facial-nerve laceration. Fourteen percent of the women had chest injuries, 5 percent sustained injuries to their breasts, 8 percent had abdominal injuries, 17 percent sustained back injuries, 9 percent had injuries to their buttocks, 39 percent had injuries to their arms and hands, and 25 percent had leg and foot injuries. Similar to the study in Greece, however, the severity of the injuries was not reported. Valera and Berenbaum (2003) confirmed that women victims of intimate partner violence received brain injuries at three times the rate of women in accidents. It should be noted that the percentages of moderate to severe brain injuries are low; that reflects the reality that most people sustaining that level of brain injury do not survive (Tanielian & Jaycox, 2008). Corrigan, Wolfe, Mysiw, Jackson, and Bogner (2003) found that 30 percent of the female victims of intimate partner violence in their survey experienced loss of consciousness on at least one occasion, and two-thirds reported ongoing problems that were possibly consequences of TBI. Jackson and colleagues (2004) examined the specific injuries and symptoms experienced by women victims diagnosed with TBI. The consequences of these injuries included having dizziness, nausea, confusion, or feeling “out of it” (77 percent) or losing consciousness (40 percent). The symptoms experienced by the women, and the frequency of those symptoms included: • easily distracted (66 percent reported the symptom, 35 percent more than once a day) • trouble concentrating (64 percent reported the symptom, 38 percent more than once a day)


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• memory problems (62 percent reported the symptom, 32 percent more than once a day) • trouble paying attention to more than one thing (62 percent reported the symptom; 45 percent more than once a day) • forgetting appointments (57 percent reported the symptom, 4 percent more than once a day) • trouble doing more than one thing at a time (53 percent reported the symptom, 34 percent more than once a day) • headaches (53 percent reported the symptom, 11 percent more than once a day) • word-finding difficulty (47 percent reported the symptom, 21 percent more than once a day) • losing things (45 percent reported the symptom, 2 percent more than once a day) • work became harder (40 percent reported the symptom, 25 percent more than once a day) • dizziness (19 percent reported the symptom, 4 percent more than one episode a day) • trouble following directions (13 percent reported the symptom, none indicated that this happened more than once a day, but it is unlikely people ask for directions more than once per day). Treatment for victims to help them gain enough independence to be able to leave abusive relationships includes assistance in finding gainful employment (Browne, Salomon, & Bassuk, 1999). If work is harder for them due to TBI, it is very difficult for them to leave abusive partners on whom they are financially dependent. Many cognitive problems, such as distraction, poor concentration, memory difficulties, inability to multitask, word-finding, and handling of work-related tasks, were experienced by victims more than once a day. This has caused many researchers to question the validity of the concept of so-called mild TBI (Lovell et al., 2003; Sterr et al., 2006). The difficulties are such that they interfere with most important spheres of people’s lives (Ackerman, 2004; Kraus et al., 2005; Lovell et al., 2003; Malec, 1999; Malec & Ponsford, 2000; Sterr et al., 2006).

ASSESSING FOR PARTNER VIOLENCE INJURY Patterns of injury and subsequent outcome have been noted by researchers. Wadman and Muelleman (1999, p. 690) noted that “head injuries predominated as the most common injury documented on ED [emergency department] visits preceding homicide.” It is highly recommended that women with TBI be evaluated for both acute and chronic problems to save lives (Briere & Jordan, 2004). Neuropsychological assessment should be a standard of care for clients who have a history of any body assaults (Ackerman, 2004; Ackerman & Banks, 2002, 2003, 2006; Banks, 2002, 2007a, 2008). Other researchers and clinicians have also requested that people living in situations with battering interpersonal relationships (Jackson et al., 2004; Valera

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& Berenbaum, 2003), trauma-inducing events precipitating PTSD (Valera & Berenbaum, 2003), and threats of murder of themselves or their children (McFarlane & Malecha, 2005) be evaluated for TBI. Victims of violence experience both psychological and physical trauma (Ackerman & Banks, 2002, 2003; Banks & Ackerman, 2002). Most treating professionals focus exclusively on either psychological or physical concerns. It is critical to consider both aspects when treating clients. There are treatable consequences of mild TBI, a life-altering experience and a source of chronic, sometimes hidden, disability in the absence of appropriate rehabilitation (Farley, 2003; Sterr et al., 2006). People in the social circles of women victims often complain that those women have “changed” or seem to have different “personalities” (Ackerman & Banks, 2002, 2006). Repercussions and maladaptive behavioral reactions within family systems often trigger requests for professionals to help stabilize family functioning. People who have sustained TBI use health services at a high rate (Schootman & Fuortes, 2000), as do women who are in abusive relationships. The chronic nature of intimate partner violence typically leads to multiple physical injuries with a possible accumulation of residual scar tissue in the brain, resulting in changed immune systems and other dysfunction of the nervous system. Díaz-Olavarrieta, Campbell, Gracia de la Cadena, Paz, and Villa (1999, p. 681) noted, “many neurologic complaints could be the result of chronic abuse and may take a long time to become clinically noticeable.” Those neurologic problems put women at increased risk for abuse (DíazOlavarrieta et al., 1999; Walsh et al., 2007; Wolkenstein, & Sterman, 1998). Mukherjee, Reis, and Heller (2003) described the adjustments made by a highly educated and professionally successful woman who was attacked during a camping trip with her fiancé. He was murdered, and she was left for dead. She had a severe brain injury that resulted in the loss of the physical use of one side of her body. In addition, she had the psychological sequelae one would expect following the brutal murder in one’s presence of a fiancé, as well as the loss of her career, her status as an independent adult, and her life plans. She progressed slowly but eventually received “compensatory” training for skills that the rehabilitation professionals felt would not return. After rehabilitation, she married an old friend, moved out of her parents’ home, and entered graduate school. She described the stigma she faced as a mother, dealing with the barriers that impeded her parenting tasks, such as inaccessible or inconvenient transportation. This woman is now the director of the Health Resource Center for Women with Disabilities at a major Midwestern rehabilitation institute. In considering how to work with victims who have sustained TBI, it is important to attend to patterns of brain function (Ackerman & Banks, 2002; 2006; Sterr et al., 2006). There are multiple levels of function. Problems can arise from · diverse scar tissue residue and each victim’s history of all types of trauma, from the neonatal period through adulthood (Ackerman & Banks, 2002). Rehabilitation therapy is available for multiple problems. Common treatment methods include quality rest, appropriate nutrition, a healthy atmosphere to facilitate quality breathing, and using compensatory techniques


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to add strengths to each person’s quality of life (Ackerman & Banks, 2003, 2006; Banks & Ackerman, 2002). TBI have been studied most often in athletes (mostly young and male) (Collins et al., 1999; Lovell et al., 2003; Matser, Kessels, Lezak, Jordan, & Troost, 1999; Matser, Kessels, Lezak, & Troost, 2001; Powell & BarberFoss, 1999). Research in this area has generated specific strategies for quick assessment, treatment, and preventive measures. Sustaining a second brain injury prior to the healing of an initial brain trauma has been demonstrated to result in poor memory, poor judgment, inability to perform at the prior level of achievement, and, in the most severe cases, death. Intimate partner violence victims (mostly female), in the absence of assessment and treatment, are at extremely high risk for second impact syndrome. For athletes, prevention of secondary injuries and through the implementation of rest, protective equipment, and rehabilitation are handled and monitored by trainers and coaches, but there are no on-site monitors for victims of intimate partner violence; similar injuries in victims of domestic violence, therefore, are not assessed and treated, nor are preventions implemented.

DOMAINS OF BRAIN FUNCTION AND DYSFUNCTION The domains of brain function and the critical questions described next are derived from the Ackerman-Banks Neuropsychological Rehabilitation Battery (A-BNRB; Ackerman & Banks, 2006). The domains that we examine are alertness, emotional processing, memory, sensorimotor, speech, academic abilities, cognitive problem solving, organic emotions, asymmetry, and treatment problems. The A-BNRB is a comprehensive screen that can be used by psychologists to develop specific rehabilitation treatment plans based on clients’ cognitive strengths and weaknesses and can be used as a behavioral screen for psychologists who would refer to neuropsychologists for more indepth evaluations. Similar to most psychological tests, it is conducted one to one and face to face either by or under the direct supervision of a licensed psychologist. The nonpsychological version of the A-BNRB is the Post-Assault Traumatic Brain Injury Interview and Checklist or P-TBI-IC (Banks & Ackerman, 2006). This is designed for other professionals, including nurses, advocates, and attorneys, working with survivors of interpersonal violence to check for red flags so that clients can be referred for in-depth assessment and appropriate rehabilitation. The information is gathered from the client, family members, significant others, co-workers, employers, medical records, and other people in the clients’ social support networks.

Alertness If a client has made progress and then suddenly stops progressing or regresses to an earlier stage of therapy, it is critical to assess changes in physical status as well as explore resistance. It is important to monitor whether the client initiates discussion or only responds to questions and comments from

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the therapist. Such difficulties have been documented in victims known to have sustained brain injuries.

Emotional Processing Emotional behaviors might be very subdued relative to the level of arousal the client shows. Typical symptoms include minimal changes in facial expression, flat voice intonation, and few words for the expression of emotion. This phenomenon is sometimes identified as alexithymia by PTSD specialists. For other clients, there is an exaggeration of emotion with inability to moderate or inhibit expression. In addition, the victim might be unable to accurately interpret the emotions of other people, including the perpetrator of the abuse. The combination of compromised inability to accurately perceive or express emotion is described as dysprosody by neuropsychologists.

Memory The victim should be assessed for memory problems. If material from therapy or educational sessions is not remembered, the client will not be able to progress. Memory is the key to improvement of all functions at all levels of severity.

Sensorimotor If the client has visible bruises, it is incumbent on a health professional to ask about the source of those bruises and determine if the client’s response is congruent with the general nature of the bruises. The congruence should involve not only the cause of the bruises but also the client’s description of pain associated with the bruises. For clients with dark skin, the professional should check for variations in coloring that might appear different from bruises on clients with light skin. If muscular tremors are occasionally observed by the therapist, but the client does not notice or seem to be bothered by them, and if such tremors are accompanied or followed by slight confusion, consideration should be given to assessment for possible seizure activity. Other sensorimotor symptoms include blurred vision, difficulty hearing, and clumsiness. Clients with loss of tactile or touch sensation tend to burn themselves easily when cooking. It is important, of course, to make certain that burns are the result of accidents rather than abuse.

Speech Some clients are difficult to understand because of slurring, hesitations, or frequent use of wrong words. If the client has previously demonstrated the ability to speak clearly and fluently, the disrupted speech might be a symptom that needs further evaluation, possibly through referral to a speech therapist.


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Academic Abilities Academic abilities are the foundation for employment that offers many victims of intimate partner violence an option to escape the violent relationship. One question to consider is whether the victim currently is unable to handle finances or read and fill out consent and other forms, despite previously being able to manage such tasks. The victim’s background should be checked closely for both quantity and quality of education. If the educational background and past function are better than the current level of function, further evaluation of intellectual processing might be needed.

Cognitive Problem Solving One difficulty for victims with mild TBI is the inability to move beyond rote learning and generalize experiences. Perhaps the victim does not seem to understand how general material presented in therapy, support groups, or classes applies to her. If the victim relates to a therapist or another professional in an immature manner, it is useful to determine whether this is a change in behavior or if it is consistent with her past adulthood behavior. One of the hallmarks of mild TBI is cognitive confusion that can result in the inability to resume past levels of community interactions in employment and in family duties. Cognitive confusion can lead to dangerous physical activities because of poor judgment. Such confusion can impair the ability of a victim to leave an abusive situation.

Organic Emotions Most therapists are aware of the serious emotional impact of intimate partner violence. When TBI is part of the picture, there are organic or neurological components that exaggerate those emotions. Depression tends to be severe, often with suicidal ideation and perhaps a history of serious attempts. For many people with acquired brain injury, there is a tendency to miscalculate their personal limitations. As a result, generally learned helplessness is not a feature; instead, there is a tendency to try to do more than is possible. The depression arises from repeated frustration with being unable to do as much as the person could do prior to the injury. With increased anxiety, there are often many somatic symptoms and complaints of generalized, nonspecific pain; it is important to refer the client for medical evaluation. Nerve damage sometimes results in painful sensations. Impulsivity is noted in many clients with mild TBI. The victim might be impulsive, rushing to move ahead prematurely or jumping to illogical conclusions.

Asymmetry Many brain-injured clients get lost easily and repeatedly. Inability to read maps and confusion of left and right are common symptoms of mild TBI. Some clients are observed to lack symmetry in facial features (for example, one eye or one side of their lips droop), have difficulty walking, and experience a range of balance problems.

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Treatment Problems Typical treatment problems for clients with mild TBI include lack of awareness of mistakes, low frustration tolerance, and loss of inhibition, manifested by socially inappropriate behavior. This can include substance abuse. Clients with these treatment problems are often diagnosed as having personality disorders. Health professionals often complain that they “don’t like” or “can’t work with” people with brain injuries. If TBI is not considered as a consequence of interpersonal violence, a victim’s behavior can be misunderstood by people with whom the victim interacts, including health professionals. Misdiagnosis of brain-injured behavior as a personality disorder can result in lack of assessment of a physical problem underlying the behavior. “Difficult” clients, who are perceived as noncompliant, bothersome, or extremely impatient, are unlikely to be referred for advanced treatment, including neuropsychological or neurological evaluation or rehabilitation. Another set of treatment problems arise when patients have received severe physical injuries to other parts of the body. Clients with broken legs have difficulty with transportation and access to many buildings. Clients with broken arms are limited in ability to manage simple tasks that are usually taken for granted. In addition, brain injury can result in paralysis. It is critical in serving such clients to be prepared to provide appropriate accommodations.

PRACTICAL CONSEQUENCES OF TBI When people sustain brain injuries, they have difficulty following suggestions. If helping professionals are not aware of symptoms, they will not understand victim’s apparent unwillingness to cooperate, and they will be unaware of available treatment for their clients. It should be noted that the changed behavior of victims supports perpetrators’ accusations of “craziness.” Brain injury also impairs the ability to anticipate and recognize danger. That prevents some victims from being able to leave before they are injured so badly that they cannot leave. Brain injury interferes with ability to organize clothes, transportation, and money. Victims have difficulty remembering people to contact and documents to carry. One of the most dreadful parts of the sustaining of brain injury is that the symptoms might increase dependence on perpetrator (Ackerman & Banks, 2003). There are treatable consequences of mild TBI, which occurs when there is injury to the brain, even in the absence of visible bruising or open cuts on the head. When the brain is injured, a wide variety of problems can emerge. Several domains of neuropsychological function are of concern when working with victims with possible undiagnosed mild TBI (Ackerman & Banks, 2006; Banks, 2007a; Banks & Ackerman, 2006). It is important to realize that women who have mild TBI do not have similar psychological profiles. Each person has a unique residual brain-behavior pattern due to accumulated physical trauma of brain tissue. Interviews to document timelines of injury, assaults, and psychological threats are essential for appropriate therapy.


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Clients need to receive rehabilitation and compensatory interventions that are culturally relevant (Ackerman & Banks, 2002, 2003; Banks, 2003, 2007b, 2008; Banks & Ackerman, 2002; Belgrave & Jarama, 2000; Bell & Mattis, 2000; Browne et al., 1999; Díaz-Olavarrieta et al., 1999; Farley, 2003; Ferraro, 2002; Manly & Jacobs, 2001; McFarlane & Malecha, 2005). The brain, under ideal circumstances, can heal itself to some extent (Brewer et al., 2002; Kozorovitskiy & Gould, 2003). Those ideal circumstances include rest and development of compensatory strategies to enhance function. In other circumstances, however, function can actually worsen, rather than improve. Appropriate neuropsychological rehabilitation can provide victims with the skills necessary to benefit from traditional treatments. Given the memory problems and concreteness experienced by many people with mild TBI, traditional psychotherapy designed to address PTSD and borderline personality disorder are often inadequate without supplemental neuropsychologically informed psychotherapy (Ackerman & Banks, 2003; Banks & Ackerman. 2002).

TREATMENT FOR TBI Ideal neuropsychologically informed treatment involves a multidisciplinary model of which psychotherapy is only one modality; it is possible, however, for one discipline or even one therapist to deliver a broad range of treatments. To receive treatment, however, it is first necessary to be diagnosed with a condition that requires treatment. It is strongly recommended that all victims of intimate partner violence receive comprehensive evaluations, including at least neuropsychological screening, as a standard of care. It is critical that the assessments and all phases of treatment be made culturally relevant and accessible for victims. To benefit from therapy, the victim must be able to implement suggestions for safety. If there are serious problems in any of the aforementioned symptom domains, the psychotherapy might need to involve concrete directives. The challenge, for example, of a client not being able to learn or initiate new behaviors requires that the therapist rely on a different set of theories to direct treatment. The impetus for the therapeutic work would be in the hands of the therapist rather than the client. Behavioral approaches to psychotherapy are strongly recommended. It is often useful to have the client keep a pocket notebook for recording designated tasks to be accomplished between therapy and educational sessions. The focus of therapy should be on good community reintegration. There are many approaches to rehabilitation (Brewer et al., 2002; Briere & Jordan, 2004; Belgrave & Jarama, 2000; Cox et al., 2006; Hassouneh-Phillips & Curry, 2002; Kozorovitskiy & Gould, 2003; Malec & Ponsford, 2000; Manly & Jacobs, 2001; Morton, 2004; Schootman & Fuortes, 2000; Slobounov, Slobounov, & Newell, 2006). It is important to remember that people with brain injury who do not receive appropriate treatment become dependent on other people who function as caregivers. When the client has not received rehabilitation or even a comprehensive evaluation, the caregivers are people who are untrained and

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ill-prepared to take on a lifetime commitment to assist those clients whose functioning can be expected to deteriorate without rehabilitation. There are three stages of brain injury treatment. The first stage involves the actual injury and the immediate medical response to it. The first stage includes emergency treatment, possible intensive care, observation, and medical stabilization. The second stage involves assessment and acute rehabilitation to counteract immediate problems. The third stage involves many of the same treatments as the acute stage but addresses more long-term problems. All three stages can be conducted on inpatient and outpatient bases, depending on the individual needs of the victim and the availability of services. Neuropsychological assessment and monitoring should be built into all stages of treatment. Alertness is treated in cognitive therapy, neuropsychology, and rehabilitation psychology. Emotional processing difficulties are addressed by cognitive therapy, music therapy, and neuropsychology. Memory problems are treated by cognitive therapy, neuropsychology, nursing, and rehabilitation psychology. People with sensorimotor problems are referred for cognitive therapy, kinesiotherapy, neuropsychology, nursing, occupational therapy, physiatry, physical therapy, rehabilitation psychology, and speech therapy. Speech problems are treated by cognitive therapy, neuropsychology, nursing, occupational therapy, rehabilitation psychology, and, as expected, speech therapy. Academic abilities are addressed in cognitive therapy, educational therapy, neuropsychology, occupational therapy, rehabilitation psychology, social work, and speech therapy. Problems with cognitive problem solving are treated in cognitive therapy, educational therapy, neuropsychology, nursing, occupational therapy, psychology, rehabilitation psychology, and social work. Clients with organic emotions are referred for assessment and treatment by neuropsychology, nursing, psychiatry, and rehabilitation psychology. Asymmetry problems are treated by neurology, neuropsychology, nursing, physiatry, occupational therapy, physical therapy, and rehabilitation psychology. The broad spectrum of treatment problems are addressed in cognitive therapy, neurology, neuropsychology, nursing, occupational therapy, orthopedics, physiatry, physical therapy, and rehabilitation psychology. Additional therapies that provide treatment for symptoms experienced by victims with TBI include biofeedback, cardiology, dentistry, endocrinology, kinesiotherapy, neuro optometry, neurosurgery, obstetrics/gynecology, pain management, recreational therapy, substance abuse treatment, and vocational rehabilitation.

CONCLUSIONS Mild TBI is a common consequence of physical assaults. The literature includes few longitudinal studies to document what happens after a person is assaulted. Acute and chronic cognitive symptoms, emotional responses, and inability to maintain a prior level of lifestyle are consequences of TBI. This chapter reviewed the types of injuries typically sustained by victims of intimate partner violence and demonstrated that the nature of the injuries and the behavioral problems observed after injury are consistent with TBI.


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There are treatments available for victims, but it is critical that appropriate assessment be conducted. Such assessments must be sensitive to symptoms of TBI and culturally relevant to the victims. The scarcity of literature that addresses TBI as a consequence of intimate partner violence reflects the serious disconnection between the fields of neurology/neuropsychology and violence studies. The disability that arises from intimate partner violence can better be addressed if more bridges are built between the disparate fields and victim services are more fully integrated.

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CHAPTER 10

“I Thought I Was Going to Live Forever” Reva Mariah S. Gover

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itting in front of my computer now, tapping my story out on the keyboard, I am still a little surprised by what my life has had in store for me. My father told me a couple of years ago that I had a “hard row to sow.” Tell me about it. I feel, at times, that I am always fighting. A by-product of my SkidiPawnee heritage and the result of my O’odham genealogy I’m sure, but who wants to constantly struggle against the inevitability of her own body? Currently, I am 35 years old and despite the fact that I have been blessed to have a supportive family, a beautiful son, and a good education, I have been unlucky enough to have just undergone quadruple bypass heart surgery. I sit here writing this with staples running the length of my right leg and an incision that is around 12 inches in length traveling my chest. Sadly, this story does not begin December of 2002, when we found out I had clogged arteries or during the two years I spent working for an institution that I believed in but ultimately left me wrung out and overtired, or the even the years I spent attaining college degrees and banging my head against immovable, institutional walls. The story of my wounded leg, broken sternum, and tedious recovery began when I was first diagnosed with Type II adult-onset diabetes. It began when I was 15. My mother and I were living in Silver Spring, Maryland, while she worked at IHS (Indian Health Service) headquarters and I attended my sophomore year in high school. Now, I can’t tell you if it was fall or spring, but it would make sense if it was fall, just in time for school physicals, when the disease first made itself known. I had, since around the age of four, always been a heavy little girl. I loved to ride my bike; I tied shoestring reins to the handlebars

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and dreamed I was riding beautiful, buckskin horses, roller skate (what can I say, I’m a child of the 70s), and downhill ski, a sport I learned while living with my father in Montana. Sure, as an early teen, I desperately wanted to wear Jordache jeans and cute foo-foo miniskirts all the rage in the mid-80s, but little did I know that my weight would ultimately mean so much more heartache than trying to wear the horrible fashion faux pas of the time. My weight and inactivity, because I didn’t have to take Physical Education any more, helped me earn the diagnosis of diabetic. I remember the day my mom and I found out because my mother came rushing to my school, jerked me out of class, and rushed me to Georgetown University Medical Center where I was immediately admitted by the head of pediatrics. The medical community there was almost in hysterics over my condition. My blood sugar was ranging in the 500s, so how could I, an adolescent, be walking and talking? They figured, from their typical juvenile patients, that I should have been in a coma. You see, adolescent diabetes, not the adult-onset type I have, is very different. Up until I ended up in their pediatric ward, the Georgetown Medical Community had never met an American Indian with diabetes, and they were startled by my anomalies. Hell, most people living on the East Coast believed that Indians (feather rather than dot) were dead anyway, literally. Over the next day or so my doctor, the head of pediatrics, contacted the Indian Health Service and realized why my body was reacting the way that it was. You see, Native Americans have a slightly different strain of diabetes, and that was why I was walking and talking despite my high blood sugar levels. Once that was established, everyone gave a collective sigh of relief and settled into finding a medical regimen to manage the disease. Exercise, exercise, diet, diet. A regimen I followed to a tee. Sure. I was 15, what did I care? Being diabetic made me a little thirsty, sometimes I had headaches, I was drowsy, but otherwise it was an invisible disease. Like most young people, I thought I was going to live forever and I had no appreciation of time. Then, time moved too slowly for me. I didn’t understand that 20 years down the line I would have problems with my eyes, or that the feeling in my fingers and especially my toes and feet would diminish. How at 15 was I to even grasp the implications of what diabetes would mean for me while I was pregnant, how much harder it would be, and the risk it could pose to my child? I didn’t know that when I was 27 I would end up in the hospital from some unknown diabetes-related condition that would leave me with the symptoms of someone who had suffered a stroke, temporarily. And finally I couldn’t have imagined that at 33 I would be diagnosed with congenital heart problems and that a cardiologist would be beating down my doors trying to get me to have quadruple bypass heart surgery. One year later, at 34, I would suffer the loss of a child, born too early suffering from the complications of not only high blood sugar but also a mother who possessed a heart with four clogged arteries. The same heart that would deny her the amount of blood she needed to keep her healthy or help her grow. I care now. And despite my youth I did try, ineffectually and sporadically. There were times that I dieted, I exercised, I lost, and I gained. Then at 22 I had my first experience with insulin while pregnant with my son. With the help of my son’s father’s healthy, diabetes-free genes, I had a healthy little

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boy. Thank God. And although my mother stressed herself out on how hard it was for me, I knew nothing different and had no basis of comparison. Four years later that I had my first “close encounter” and saw what diabetes could begin to mean for me as I left the hospital with the right side of my body affected. My ears buzzed, my speech was slurred, my arm and leg functioned slowly and reluctantly. Ironically, my physician still does not know, even now, what exactly happened, how I got ill, or how I recovered. Earnie Frost, my good friend and medicine man, and I, know how I recovered, but that is a different story. This is my story—my diabetic story, anyway—in a nutshell. Believe me that in the last year I have thought a lot about chronic diseases and health and what it means, not just for me but also for other Native American people. I find myself recalling what my favorite primary care physician, Dr. Theresa Cullen, came to tell me when I was pregnant with my daughter as my OB/ GYN had been very nervous about my pregnancy, as I was diabetic, and diagnosed with chronic heart disease. As any doctor in her position would do, the OB/GYN had been having an ongoing conversation with my cardiologist, yet another of my favorite medical personages, who then contacted my primary care doc, Dr. Cullen. Oh my goodness, all these doctors! Dr. Cullen has a lot of experience with chronic diabetes on the Tohono O’odham Reservation. She told me that when she spoke to Dr. Brody, my cardiologist, that she had no doubt that I could have my baby as there was no telling how many O’odham women were out on the reservation suffering from the same disease and were just as pregnant. She’s a doctor, not a fortune-teller. In the end, though, her pragmatism scares the hell out of me. Dr. Cullen is an awesome and caring doctor, but in all reality, I’m lucky. Because I live in Tucson, because I am educated, because my diabetes was caught almost from the onset, I have so many pluses on my side. Yet with all of my pluses, this year I had to bury my child, go through a quadruple heart bypass, and, my personal favorite, laser eye surgery. It may not be heart surgery but it is NOT painless—what a crock! What does that mean? There are so many people on reservations that don’t have the opportunities that I do. If I am lucky, what does that mean for others? How many are suffering, losing children, eyesight, feeling in their hands and/or toes, going through amputation, and juggling their insulin shots with their next Snickers bar? And where does that put me? When all is said and done, really, I think that we have got to do our share for all of our people. Things have got to change or we are going to end up as Tribal Nations filled with the decrepit who are unable to lead long, fulfilling, lives. I’m not trying to pretend that I have any answers or that I am on some kind of noble crusade. Honestly, simply, I care. I don’t want my son, my nephews, my nieces, my grandchildren, or my little brothers to suffer. My relations, all of them, us, this family of women, of humanity—of honorable and knowledgeable beings. This forum is the stepping stone, a beginning place for native women, peoples, to come together and “see.” It is a place for us to explore our commonalities and decide where we might go from there. So I say Nowa (Skidi-Pawnee), I say S:keg Tas (Tohono O’odham). Good day. My name is Mariah, and I am glad to meet you all.

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Long Division I reside in a world of halves. Half desert, half plain— a dimension where lightening cracks a watercolor sky; sometimes violet, sometimes grey—jagged mountains mirroring infinite black and infused points of light. A world in halves, a world in halves; my Uppitt knew. He believed in educated power, the need for alien thoughts spun into alien words, the birth of this new world and our survival this way. Eyes closed and dreaming, secrets burrowed a thorny chasm of hope. I am Mother, today, I am Woman. A tornado of warring sentiments—born of the soul, etched in the womb, desire within desire—and how do I keep either side from winning? Today, I struggle to find my way in death, or rebirth— unable to conjure myself in breath or sound. My spirit crumbles with the living and turned out of my body I don’t have the strength to navigate the Stars. What I lost Uppitt always had—I see him sometimes, pointing to his Mother, the Moon. Singing lullabies my tongue twists around the shape-sounds, and colored hues of an enemy language. Clear tones of alabaster wince at the brown of my eyes, the black of my son’s hair, the pulse of my Heluska heart and his rhythmic sleep-breath. I reside in a world of halves. Wielding arrows and obsidian knives I bare resistance to those who would suck my being through the nipple of Manifest Destiny—masquerading as Christ, ordained as God. Shuddering, I am horrified by good intentions and smallpox. Wrapped in a blanket of fear I clutch diplomas to ward off evil. Refuse to dream, turn my face away from grace— strive to embrace and deny who I am, who my children are, and who we will always be. I have given birth and I have created with words. I have danced and I have sung the old songs. Clutching the earth by my fingernails I will invent a song that will save me as I walk this ledge. A blade of sweetgrass between my teeth I pray. Words you cannot hear, and I cannot say.

“Long Division” was published previously in Sister Nations, edited by Heid Erdich and Laura Tohe (St. Paul: Minnesota Historical Society Press, 2002). Used with permission. Also used by permission and previously published by Red Ink: A Native American Student Publication (www.redinkmagazine.com). [Reva Mariah S. Gover]

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Cracking For Theresa Ryann Gover (Dec. 24–Dec. 27, 2003) The words inside me are cracking Losing you was not the beginning Only the final note for my silence I told my friend once that when emotion comes I feel it in my throat, I can’t talk when tears Streak across my face and land in my ink My mind roars syllables that never appear This doesn’t mean that I don’t hold you in my mind Beautiful girl I name you for cool mountain breezes Power songs and the faith that I bore in your beginning I still feel the confusion I knew when I first held you Grateful for the life in my arms and the chance To cradle my, and God’s, creation only Having you there marked your passage beyond Where I could never reach you or hold you to my breast You took three body-stretching breaths and I hoped Your lungs would fill and your heart would save me Hoped that once again the doctors were wrong I watched as nurses pulled tubes from your mouth Tape from your face while tears ran from their eyes I was honored and astonished by their compassion Three breaths, three days and the day before when your Tiny feet tapped against my hand bore witness Testimony that you lived and I still can’t talk about it I never heard you cry or smelled your breath I have only the memory of the weight of you in my arms [Reva Mariah S. Gover] Five Minutes til Daylight It seems, sometimes, dreams are found in somebody else’s print. It’s what Alexie says, how do we delve into the poetic when dirty dishes sit in the sink, files need refuge, or it’s laundry night? Reading I find myself thinking again . . . what does that mean and where am I really? Not in the heart of this poem. I don’t want to put sound

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or meaning behind all that has been my life. My strong heart has been failing me. I hear it hum in the back of my throat trying to pull itself past my vocal chords. Scream loss of Faith. Hope unvoiced, dyed, black, ink. I can pull myself along. Sing myself to my feet and dance out of the ditch. Fight knowing I could beat my enemy, would beat. Battle bloody I pay willingly. Shame sews my words, ties them up, leaves them to cringe, paralyzed. Drown visions. Drown age, drown pain, loneliness, death. Mine or those I love, still mine. I know I’m hedging. There are no answers. Maybe I need to find my strong heart, again. Recreate it, fill it. Imagination, Faith, Prayer. Will it . . . across my teeth, behind my tongue, slide it down my throat and maybe, maybe beat. [Reva Mariah S. Gover]

CHAPTER 11

Coping Following Traumatic Brain Injury: Lessons from Autobiographical Accounts Elizabeth Kendall, Melissa Kendall, and Heidi Muenchberger

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raumatic brain injury (TBI) has been associated with significant difficulties in the area of psychosocial adjustment. According to researchers, it is important to understand how people cope following such devastating events. However, studies of the relationship between coping and psychosocial wellbeing in the TBI population have been limited and yielded inconclusive results. Data obtained from quantitative studies have differed from those obtained through qualitative methods. However, a rich source of information about coping has been autobiographical accounts of the TBI experience. This chapter describes the content of autobiographical records published in the Journal of Cognitive Rehabilitation: From the Patient’s Perspective. Through these narratives, we explore the coping strategies and styles reported by people who have sustained TBI as they were described in their own writings rather than through research interviews. Over 44 different coping strategies were identified in the narratives. These strategies clustered into nine major coping styles. The study revealed a strong use of coping styles that depended on the individual’s freedom to explore their new identity and grieve the loss of their old identity. There was considerable indication of a trial-and-error process that was essential to the development of coping styles and less use of problem-focused coping than would be expected. TBI has been associated with significant difficulties in the area of psychosocial adjustment. However, researchers have noted that such difficulties do not occur uniformly across the population (Kendall & Terry, 1996), indicating that some individuals may cope better than others. Determining the style of coping that contributes to pyschosocial adjustment can reveal important information for rehabilitation programming. In their theory of stress and

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coping, Lazarus and Folkman (1984) proposed that coping responses are naturally implemented when situations are appraised as being stressful (Aldwin & Revenson, 1987). In contrast, low-stress situations should not encourage the use of coping (Finney, Mitchell, Cronkite, & Moos, 1984). Lazarus and Folkman suggested that most coping strategies could be classified as either problem-focused or emotion-focused, although coping responses are likely to incorporate both types of strategies (Lazarus, 1993). Studies of the relationship between coping and psychosocial well-being in the TBI population have been limited and have yielded inconclusive results. For instance, Moore (1989) found that individuals with TBI who reported using a range of emotion-focused strategies simultaneously reported a higher level of social and emotional disturbance than those who reported the frequent use of a small set of problem-focused strategies. A study conducted by Curran, Ponsford, and Crowe (2000) found that emotion-focused coping was associated with higher levels of depression and anxiety, whereas strategies focusing on problem solving were associated with lower depression. However, a longitudinal study conducted by Kendall, Shum, Halson, Bunning, and Teh (1997) found that problem-focused coping did not significantly predict outcome at 12 months postinjury, but appraisal of one’s situation was a significant mediator of the relationship between resources and adjustment. This finding indicated that how individuals perceive their situation may be more important than the actions they take in response to problems they encounter. Qualitative studies have revealed a slightly different pattern of coping to those that have relied on self-report inventories. For instance, using focus groups, Willer, Allen, Durnan, and Ferry (1990) found that the most important coping strategy for people with TBI was social support from family, friends, and support groups. Other frequently nominated coping strategies included seeking an understanding and acceptance of their limitations, maintaining a positive outlook, taking an active role in decision-making processes, educating the public, and praying. For some individuals, coping involved regaining a social role and controlling negative emotions such as aggression. Problem solving was also nominated as a strategy, but only in the context of compensating for particular disabilities, seeking rehabilitation or assistance, and reallocating responsibility for tasks in the home. Furthermore, clinicians have observed that over time, problem-focused coping may become less effective in response to chronic conditions such as TBI (Hinkeldey & Corrigan, 1990; Van Zomeren & Van den Burg, 1985). Karpmann, Wolfe, and Vargo (1986) analyzed a series of in-depth interviews with people who had sustained a TBI and found several coping themes that were not reflected in self-report inventories. These themes included hope and optimism, determination, self-evaluation, self-acceptance, religion, developing a new attitude toward life, and establishing new social support networks. Similarly, the importance of coping strategies such as the search for new meaning and making sense of one’s circumstances has been documented by clinical practitioners in the TBI area (Nadell, 1991). The most enlightening examination of coping following TBI involved the autobiographical account of Linge (1990), a clinical psychologist who

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sustained a severe TBI. In discussing his acceptance of his situation and his reinvestment of energy into a new life, Linge described coping as a day-today task that was accomplished through emotional trial and error. Further, he stated that to sustain one’s motivation, it was necessary to focus on small achievements. He wrote about the need to rebalance his life, rebuild himself, and find meaning or sense in the injury. He concluded that successful coping involved maintaining hope about the future, having faith in one’s ability, drawing on the love and support of one’s family and ensuring that important assets, such as one’s family, survive the crisis. These types of coping strategies are not routinely measured through self-report inventories. Given the significant contribution to the understanding of coping that can be derived from this single autobiographical account, it seems logical that other autobiographical accounts following TBI may offer similar insights. Thus, the current study examined coping following TBI through a series of autobiographical accounts of people who had achieved a reasonable level of postinjury adjustment in terms of return to work or psychosocial functioning. The purpose of the study was to develop an understanding of coping following TBI from an insider’s perspective (Crisp, 1993).

AUTOBIOGRAPHICAL ACCOUNTS OF BRAIN INJURY A total of 52 autobiographical accounts written by people with TBI were examined. The articles formed a consecutive series of articles published during a randomly selected decade of the Journal of Cognitive Rehabilitation (i.e., between 1986 and 1997). These articles were published in the section titled “From a Patient’s Point of View.” According to the editors of the journal, articles submitted for this section were usually published unedited and were therefore the original work of the authors. Articles were only included in the sample if they had been written by an individual with TBI and if they documented the individual’s adjustment experiences since injury. Of the 69 articles published during this period, 17 were excluded because they failed to meet these criteria (i.e., they were written by a relative or referred to a specific topic such as memory strategies or physical therapy). Given the archival nature of the study, little was known about the authors of the narratives. We know that 22 were written by males and 30 were written by females. Thus, the percentage of females who chose to write about their experiences was larger than would generally be found in the TBI population, indicating a gender bias in the sample. Time since injury ranged from 1 to 22 years. On the basis of their autobiographies, the authors all appeared to have reached a reasonable level of adjustment. For instance, all expressed some degree of acceptance or understanding of their current situation, and 23 of the 52 authors stated that they had successfully returned to work or study. Thus, it was concluded that the sample may have represented a selection of people with TBI who had attained positive outcomes of some nature, presumably as a result of their coping efforts. Using content analysis, we systematically searched the narratives for cognitive constructs, such as beliefs, attitudes, and coping responses. Although

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cognition does not always equate with verbal reports, self-reflective writing such as journals, stories, and diaries have been found to represent a window to cognition (Lee & Peterson, 1997). We systematically coded, counted, and recorded the text to produce both quantitative and qualitative descriptions. Coping was defined as any action, thought, or emotion that was implemented for the purpose of alleviating the pressures of the individual’s situation. We each searched for specific statements, paragraphs, words, or symbols that appeared to represent coping using this definition. Expressions that contained the same basic idea or strategy were then grouped together to form categories that formed a final coding system. Once a coding system had been finalised through discussion, each of the articles was reanalzed using the identified categories. Interrater reliability for the coding of coping strategies was established for a subsample of 5 articles selected randomly from the total sample of 52 articles. Interrater reliability was calculated using the percentage of agreement between our codes and was found to be reasonably high at 77.9 percent. Finally, the identified coping strategies were organized into coping styles according to the presence of similar foci, processes, or functions that were apparent in the data. Specifically, strategies were clustered to form a response style if they clearly represented a common semantic theme or a similar focus/ function. The data were then reexamined for disconfirming evidence to ensure that the experiences represented in individual articles could be explained with reference to these coping styles.

THE COPING STRATEGIES A total of 44 coping strategies were identified in the first phase of coding. The most frequently reported coping strategies involved seeking support and encouragement from family (n = 36) and staff (n = 37); maintaining perseverance, motivation and determination (n = 36); releasing emotions (n = 34); learning about oneself now (n = 35); and knowing and accepting the limitations created by the injury (n = 30). The coping responses that were nominated least frequently included taking social action (n = 7) and maintaining options (n = 7), actively seeking happy experiences (n = 9), living for today (n = 8), engaging in physical activity (n = 9), and relaxation (n = 8). Only a few authors described the process of writing and reliving experiences (n = 10) as a coping strategy. However, all had clearly used this coping strategy at least once when writing the article used in the present study. Consequently, this strategy was not considered to be a reliable category. Similarly, only nine authors directly nominated trial and error as a coping strategy. These authors reported that rather than using directed and focused coping efforts, they tried a range of strategies, both effective and ineffective. For example, Niles (1990) (Narrative NI) described this style of coping by saying: “Everyday was a learning experience, not all positive I might add. I was learning as I lived by trial and error” (p. 6). This style of coping was evident, however, in many of the articles. Although not directly referring to their trial-and-error coping style, a large group of


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authors reported using a wide variety of strategies that appeared to be relatively unfocused and changeable over time. Indeed, most authors described a period of time when they employed a wide range of strategies with varying success until they could find a workable set of responses. Many authors described their coping as a cyclical process, characterized by active efforts to cope or manage followed by failure, avoidance, acceptance, and then renewed efforts. Olson and Crossen (1989) (Narrative OL) described: “Trying a hundred and one things, grabbing the ones that worked and hanging onto them and desperately moving on from there” (p. 6). Although not conclusive, there did appear to be a trend for certain types of coping to be used at different points in the adjustment process. Strategies used early in the recovery process tended to focus on managing emotions (e.g., denial and trying to forget, releasing emotion, withdrawal from others, worrying, grieving the loss of the preinjury person, seeking family and staff support, seeing self as lucky and maintaining humor). Coping strategies that emerged later in the process tended to focus on finding meaning or reason in the injury (e.g., becoming a helper to others, taking pride in accomplishments, writing and reliving experiences, believing in oneself, and maintaining dreams and goals). Strategies such as recognizing one’s progress, developing future directions, and reestablishing dreams appeared to be associated with long-term coping.

THE COPING STYLES The coping strategies were clustered on the basis of common semantic themes, leading to the identification of nine coping styles that seemed to adequately explain the data. The coping style is, therefore, a more general approach to coping rather than a single coping strategy. Despite using a wide range of coping strategies, the majority of authors appeared to rely on a predominant coping style. Although there was some indication that coping style changed over time or became more refined, subsequent checking of these clusters against the original data confirmed that they frequently appeared together in the narrative.

Personal Discovery Coping Personal discovery coping was a style of coping that centered around learning about oneself as a person with TBI. The ability of the individual to personalize the experience was a defining characteristic of this style of coping. For example, Posner (1993) (Narrative PO) exemplified this type of coping by saying, “In the end, despite all of the very best sympathetic professional care, it is and remains a very personal and lonely time of discovery” (p. 5). Lonseth (1997) (Narrative LO) likened this personal discovery coping following TBI to an adventure: To sort it out, the stranger must explore the strange world, learning what has changed and what has not, determining new capabilities and limits and searching for clues to understanding. One becomes a pioneer, an explorer or an adventure,

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forming one’s own unique model . . . for most of us, this adventure will last for the rest of our life. (p. 7)

Personal discovery coping tended to appear in a cyclical fashion, where individuals reported discovering aspects of themselves and then experienced a period of emotional release or grieving and trial and error while solutions were sought. On discovery of each new limitation, this process appeared to be repeated.

Goal-Directed Coping A goal-directed coping style typically involved the use of more objective coping strategies, such as practical problem solving, persistence and determination, and seeing recovery as a challenge. Goal-directed copers tended to focus on conceptualizing where they expected to be at some point in the future and directed their coping efforts toward that point. Most goaldirected copers consistently aimed for recovery and refused to believe that their goals could not be achieved. For example, Rheaume (1989) (Narrative RH) stated: When disabled people accept and realize the harsh realities of being disabled . . . they accept that things other people do with ease will always give them trouble. But they must not allow themselves to stay depressed or discouraged. They must develop the desire to perfect their bodies, lives and minds to maximum potential. (p. 7)

Control/Independence Coping Coping strategies such as attributing blame, seeking control, gathering information, taking social action, and becoming a helper were associated with taking control, independence, and responsibility. Control/independence copers tended not to rely on those around them and believed that independence, personal strength, individual responsibility, and control were indicative of effective coping. For instance, Drohobycki (1993) (Narrative DR) stated: “I learned how strong I could be when I had to stand alone. It was something I needed to experience . . . I regained my independence, a strength I thought I had lost forever” (p. 15). Similarly, Ostrum (1992) (Narrative OS) described the need for control as being essential, saying, “The lack of control has equally profound effects. When a person loses control of their body, they lose not only self-esteem but also all sense of having any control in the world” (p. 4). Control/independence copers frequently indicated that helping others and taking responsibility for assisting other people in similar situations helped them cope with their own situation.

Purpose-Focused Coping Some individuals managed by believing that there was some purpose in their injury and the ongoing difficulties they were facing. They perceived that pain and struggle were essential components of that process and had to be


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endured to discover the true meaning of their life following injury. Almond (1992) (Narrative AL) stated: Three things I have learned from my brain injury: first, that I am not a victim, or patient but a survivor. I have overcome great hurdles and obstacles. I am not ashamed or embarrassed by being a survivor, but proud. It’s who I am and I learned to accept it. Second, that life is very fragile: there is much more to living than a pulse and respiration. Lastly, that I was saved for a very great purpose and that it is my obligation to find it and achieve it. (p. 4)

Coping strategies typically used by purpose copers included recognizing the value of life, identifying a sense of purpose and meaning, seeing survival as a second chance in life, becoming a helper to others, taking social action, recognizing remaining abilities and positive changes, and making the most of everything.

Social Coping Strategies such as seeking support from rehabilitation staff, family members, and other people with TBI were strongly represented in the data. Individuals who used this coping style sought social contact for support, learning, and comparison. This type of coping style frequently co-occurred with strategies such as gathering information and recognizing one’s remaining abilities or positive changes. Hock (1991) (Narrative HO) commented: “I needed my family to help keep me focussed on my recovery, to remind me of the life I could have back through therapy and my own effort. There were times when I needed their strength because I no longer had any of my own from which to draw” (p. 4). Proctor (1988) (Narrative PR) described the importance of social coping and comparison by saying: One of the most helpful concepts to me was the idea of a support group . . . suddenly I was becoming aware that there were others who were having similar problems . . . we support group members that have been there before. We are able to empathize better as opposed to someone who had never had the experience of a head injury or a stroke. (p. 7)

An interesting aspect of social coping was the frequent occurrence of initial withdrawal from social contact and a denial of limitations. This withdrawal was described as a period of emotional upheaval that often occurred early after discharge from the hospital. Authors often described how this period of emotional withdrawal creates a heightened awareness of the importance of family and friends, and encouraged them to access those supports fully.

Spiritual Coping Spiritual coping was a style adopted by many individuals following TBI. Spiritual coping styles centered around religion, God, or general spirituality. Individuals wrote about how they derived a sense of comfort and security from the belief that they were being guided by a spiritual process. Longenecker

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(1993) (Narrative LN) described spiritual coping in the following way: “I have learned to make my life count for eternity with God. I have accepted what has happened to me . . . I’m too busy thanking God for what I have. He has given me a rather smart mind and the ability to walk around and enjoy life” (p. 4). Spiritual copers typically reported a strong belief in religion or God, believed that they were lucky to be alive and viewed survival as a second chance. They stayed patient, made the most of everything, believed in themselves, and recognized the value of life.

Day-by-Day Coping Day-by-day coping was evident among several authors who chose to relinquish their long-term goals and focus on living for today. The coping strategies used by individuals as part of a day-by-day coping style included making the most of everything, living for today, knowing and accepting limitations, gaining from small successes, keeping busy, and seeking happy experiences. Rather than establishing plans around an uncertain future, these authors systematically worked on handling each new challenge and getting through each obstacle. Herbine (1994) (Narrative HE) described day-by-day coping as being essential following TBI and illustrated how it could conflict with other styles of coping: I was encouraged to live for each day, not to worry about tomorrow, not to make expectations for the future. There was no way to predict the extent of my ultimate recovery. This was excellent advice . . . However, to adopt this view of life, I had to give up being goal and future oriented. I had to accept the fact that “I” had no control over my future and that there may be a risk in establishing goals. (p. 6)

Hard Work and Discipline Coping Some authors reported a general approach to coping that involved hard work and self-discipline. Coping through hard work typically involved the use of persistence and determination, staying patient, taking pride in accomplishments, seeing recovery as a challenge, finding a balance, and believing in oneself. This coping style frequently involved statements about how a focus on hard work enabled people to see a positive future with the upheaval created by TBI through sustained effort. Campbell (1987) (Narrative CA) stated: “Learning to live with a brain injury requires patience, determination, stamina and a belief in yourself” (p. 25). Leckrone (1986) (Narrative LR) also suggested that “Life can and will get better, given a certain degree of struggle, with a lot of willpower determination” (p. 5). Perhaps the best description of this style of coping was provided by Doherty (1991) (Narrative DO) when he illustrated how he maintained his motivation. “I do the very best I know how—the very best I can and I mean to keep doing so until the end. If the end brings me out alright what is said about me won’t amount to anything. If the end brings me out wrong, ten angels swearing I was right would make no difference” (p. 11).


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Use of Emotional Coping Coping through humor was utilized by only a small number of the authors and frequently accompanied other strategies. These individuals were able to identify with the lighter side of their experiences. For example, Maul (1989) (Narrative MA) wrote about her impairments as the “others” residing in her head with whom she formed a team. She described her adherence to antiepileptic medication as resulting from a desire to “Not learn the hard way that ‘we’ should have kept me, myself and I on the medications regularly. We DO NOT want the opportunity to demonstrate a slam dance in the midst of a busy supermarket” (p. 6). In describing her emergence from a coma, she said: “Fortunately the majority of folks residing in my head decided to party for only ten days. Unfortunately, those in my head who are subletting my memory skills and other fine reasoning abilities decided to take a longer break” (p. 6). Deliberately seeking happy experiences was an aspect of this strategy. Some reported finding places that energized positive emotions. “If you find some place you liked being at that made you feel great when the going gets tough—myself, I use [major aquarium center where author could watch water and large fish in their natural environment]” (Holland, 1991, p. 4). The importance of expressing emotions was also stressed. This strategy involved deliberately allowing emotions to emerge rather than supporting them (Nevil, 1995, p. 6): “They [rehabilitation providers] have helped me to learn to release emotion and tension in new ways.” Several authors described how the release of emotions often followed several years of “ignorant bliss” (Ottewell, 1992, p. 10): “It was impossible for me to accept that something really had happened—that I was not going to wake up one morning and everything would be back to normal.”

CONCLUSIONS People with TBI wrote about a wide variety of coping strategies. The number of coping strategies identified by the authors was more extensive than those contained in most coping self-report inventories, indicating that self-report inventories may fail to assess the full nature of coping. The problems associated with self-report inventories have been documented extensively in the literature, yet the use of these inventories to assess coping is still widespread (Kendall, Shum, Lack, Bull, & Fee, 2002). Such inventories represent a quick method of assessment that is easy to analyze. However, the current study has indicated that self-report measures are likely to miss the rich and subtle aspects of coping. Many of the coping strategies frequently identified in this study were those that focused on altering perceptions (e.g., perseverance and motivation, grieving for the loss of the preinjury person, knowing and accepting one’s limitations, maintaining hopes and dreams, and focusing on positive changes). This finding suggests that people with TBI often cope by reconceptualizing their impairments and their daily stressors from a more positive frame of reference. In this regard, a few studies have found that people with

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TBI commonly use coping strategies directed at altering their perceptions of their situation (Karpman et al., 1986). Indeed, some research has shown that the use of such coping may be related to the perception that the injury and its consequences were uncontrollable, thus limiting the value of active coping efforts (Kendall et al., 2002). However, many of the coping strategies identified in this study are not assessed by traditional self-report inventories, restricting our knowledge in this area. The narratives highlighted the importance of the personal and experiential aspect of coping. The experience of TBI was not described as a single event that necessitated coping efforts. Although this definition of stressful events has dominated the coping literature, the current study has shown that authors described TBI as being inseparable from their existence—an integral aspect of themselves. It was thought that the personal nature of the exploration most authors described could not be understood from an external perspective. The profound impact of TBI was considered to be almost unfathomable, even for those authors who had struggled for understanding over a period of many years. Their experiences were dominated by discussions of learning, rebuilding, testing, and exploring. This existential experience has been documented elsewhere (Kendall, Buys, & Larner, 2000; Nochi, 2000) and casts further doubt on the validity of structured self-report measures that attempt to capture this process. In contrast to the rich description of personal discovery contained in the stories, much of the coping literature has identified the importance of problem-focused coping for psychosocial adjustment following traumatic or stressful events (Folkman, Lazarus, Gruen, & DeLongis, 1986; Holahan & Moos, 1987; Malia, Powell, & Torode, 1995; Miller, Brody, & Summerton, 1988; Moos & Billings, 1982). The current study has confirmed that this sample of people with TBI used problem-focused coping strategies such as practical problem solving, but usually only in relation to physical recovery, rehabilitation, and activities of daily living. Indeed, several authors described how problem-focused and goal-directed behavior often obstructed their adjustment process and had to be abandoned. Research has also suggested that emotion-focused coping is negatively related to psychosocial adjustment (Folkman et al., 1986; Holahan & Moos, 1987; Malia et al., 1995; Vitaliano, DeWolfe, Maiuro, Russo, & Katon, 1990). In the current sample, many coping strategies could be classified as emotionfocused (e.g., releasing emotions, denial, withdrawal, relaxation, and hypervigilance). Typically, these strategies were used early in the recovery process, indicating that they may be a necessary component of progress toward adjustment. In some cases, however, the use of strategies aimed at altering emotions continued periodically for many years postinjury. This finding confirms other work in the area of adjustment that describes the cyclical and recurrent nature of this process (see Kendall and Buys, 1999, for review). People with TBI utilized a wide variety of coping strategies in the years following their injury. Despite this diversity in coping strategies and coping styles, all individuals appeared to have reached some satisfactory level of acceptance of their situation. This finding suggests that there is no correct way


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of coping. Indeed, coping appeared to be a very private and individualized process, often characterized by trial and error. Importantly, the very process of planning, organizing, and realizing new activities, often through a trialand-error approach, becomes crucial in reconstructing personal identity and establishing future life direction following a traumatic injury (Ville, 2005). Although the current study is an innovative attempt to examine coping, results must be treated with caution due to several methodological difficulties. First, the production of a public document may have encouraged some authors to avoid reference to socially undesirable strategies (e.g., alcohol or drug use) (Krefting, 1989). An investigation of less public writings, such as journals and diaries, may expose other coping strategies. Second, although most authors described their process of recovery in detail, the retrospective nature of these accounts may have meant that some processes were forgotten or obscured. Third, it is important to acknowledge the fact that the majority of people who chose to write about their experiences were likely to have been educated or have been employed in professional roles prior to their injury. Similarly, the authors were more likely to be female, in contrast to the gender distribution that would be expected in the TBI population. Thus, the coping strategies reported by this sample may not generalize to the broader TBI population. Despite the methodological difficulties associated with analysis of public autobiographical writings, the current study has provided some insight into coping beyond that provided by self-report inventories. A major implication of this chapter for rehabilitation professionals involves their role in assisting individuals to negotiate the private and ongoing process of coping. It is not unusual for rehabilitation professionals to make generalized judgments about the value of particular coping strategies and encourage the use of standard techniques. This study has shown that such advice may hinder the natural coping process, particularly if it interferes with the learning experiences of the individual. For rehabilitation professionals, it may be important to accept the natural coping course many people with TBI choose to follow as they discover new coping strategies, test existing strategies, and learn about their new identity.

REFERENCES Aldwin, C.M., & Revenson, T.A. (1987). Does coping help? A re-examination of the relation between coping and mental health. Journal of Personality and Social Psychology, 53, 337–348. Almond, B. (1992). From a patient’s point of view: My story. Journal of Cognitive Rehabilitation, 10(5), 4. Campbell, J. M. (1987). From a patient’s point of view: My story. Cognitive Rehabilitation, 5(1), 24–25. Crisp, R. (1993). Personal responses to traumatic brain injury: A qualitative study. Disability, Handicap and Society, 8(4), 393–405. Curran, C., Ponsford, J., & Crowe, S. (2000). Coping strategies and emotional outcome following traumatic brain injury: A comparison with orthopedic patients. Journal of Head Trauma Rehabilitation, 15(6), 1256.

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Doherty, J. (1991). From a patient’s point of view: My story. Journal of Cognitive Rehabilitation, 9(2), 10–11. Drohobycki, A. (1993). From a patient’s point of view: My story. Journal of Cognitive Rehabilitation, 11(5), 15. Finney, J. W., Mitchell, R. E., Cronkite, R. C., & Moos, R. H. (1984). Methodological issues in estimating main and interaction effects: Examples from coping/social support and stress field. Journal of Health and Social Behaviour, 25, 85–98. Folkman, S., Lazarus, R.S., Gruen, R.J., & DeLongis, A. (1986). Appraisal, coping, health status, and psychological symptoms. Journal of Personality and Social Psychology, 50(3), 571–579. Herbine, B. (1994). From a patient’s point of view: My story—undefined discomfort. Journal of Cognitive Rehabilitation, 12(3), 6–7. Hinkeldey, N. S., & Corrigan, J. D. (1990). The structure of head-injured patients’ neurobehavioural complaints: A preliminary study. Brain Injury, 4(2), 115–133. Hock, S. (1991). From a patient’s point of view: My story. Journal of Cognitive Rehabilitation, 9(2), 4. Holahan, C., & Moos, R. (1987). Personal and contextual determinants of coping strategies. Journal of Personality and Social Psychology, 52, 946–955. Holland, J. (1991). From a patient’s point of view: My story. Journal of Cognitive Rehabilitation, 9(6), 4. Karpmann, T., Wolfe, S., & Vargo, J. W. (1986). The psychological adjustment of adult clients and their parents following closed-head injury. Journal of Applied Rehabilitation Counseling, 17(1), 28–33. Kendall, E., & Buys, N. J. (1999). The psychosocial consequences of motor vehicle accidents. Journal of Personal and Interpersonal Loss, 4, 47–66. Kendall, E., Buys, N. J., & Larner, J. (2000). Community-based service delivery in rehabilitation: The promise and the paradox. Disability and Rehabilitation 22(10), 435–445. Kendall, E., Shum, D., Halson, D., Bunning, S., & Teh, M. (1997). Social problem solving following traumatic brain injury: A new assessment technique. Journal of Head Trauma Rehabilitation, 12, 69–79. Kendall, E., Shum, D., Lack, B., Bull, S., & Fee, C. (2002). Coping following traumatic brain injury: The need for contextually sensitive assessment. Brain Impairment, 2(2), 81–96. Kendall, E., & Terry, D. (1996). Psychological and social adjustment following closed head injury: A model for predicting outcome. Neuropsychological Rehabilitation, 6, 101–132. Krefting, L. (1989). Reintegration into the community after head injury: The results of an ethnographic study. Occupational Therapy Journal of Research, 9, 67–83. Lazarus, R. S. (1993). Coping theory and research: Past, present, and future. Psychosomatic Medicine, 55, 234–247. Lazarus, R., & Folkman, S. (1984). Stress appraisal and coping. New York: Springer. Leckrone, J. (1986). From a patient’s point of view: My story. Journal of Cognitive Rehabilitation, 4(6), 4. Lee, F., & Peterson, C. (1997). Content analysis of archival data. Journal of Consulting and Clinical Psychology, 65, 959–969. Linge, F. R. (1990). Faith, hope, and love: Nontraditional therapy in recovery from serious head injury, a personal account. Canadian Journal of Psychology, 44, 116–129. Longenecker, P. (1993). From the patient’s point of view: My story. Journal of Cognitive Rehabilitation, 11(5), 4–5.


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Lonseth, A. (1997). From the patient’s point of view: My story. Journal of Cognitive Rehabilitation, 15(4), 6–8. Malia, K., Powell, G., & Torode, S. (1995). Coping and psychosocial function after brain injury. Brain Injury, 9(6), 607–618. Maul, C. L. (1989). From the patient’s point of view: My story. Journal of Cognitive Rehabilitation, 7(1), 6. Miller, S. M., Brody, D. S., & Summerton, S. (1988). Styles of coping with threat: Implications for health. Journal of Personality and Social Psychology, 54, 142–148. Moore, A. (1989). Prospective development of coping, cognitive beliefs, and adjustment between six and fifteen months following traumatic brain injury. Abstracts of 14th Annual Meeting of the Cognitive Neuropsychological Society. Moos, R. H., & Billings, A. G. (1982). Conceptualizing and measuring coping resources and processes. In L. Goldberger & S. Brenitz (Eds.), Handbook of stress: Theoretical and clinical aspects. New York: Free Press. Nadell, J. (1991). Towards an existential psychotherapy with the traumatically brain injured patient. Cognitive Rehabilitation, 9, 8–13. Nevil, S. (1995). From the patient’s point of view: My story. Journal of Cognitive Rehabilitation, 13(4), 6. Niles, S. M. (1990). From the patient’s point of view: My story. Cognitive Rehabilitation, 8(4), 6–7. Nochi, M. (2000). Reconstructing self-narratives in coping with traumatic brain injury. Social Science & Medicine, 51, 1795–1804. Olson, G., & Crossen, J. R. (1989). From the patient’s point of view: My story. Cognitive Rehabilitation, 7(5), 6–11. Ostrum, A. E. (1992). From the patient’s point of view: My story. Journal of Cognitive Rehabilitation, 7(5), 6–11. Ottewell, C. G. (1992). From the patient’s point of view: My story. Journal of Cognitive Rehabilitation, 10(1), 8–10. Posner, J. (1993). From the patient’s point of view: My story. Journal of Cognitive Rehabilitation, 11(2), 4–5. Proctor, R. (1988). From the patient’s point of view: My story. Journal of Cognitive Rehabilitation, 6(3), 7. Rheaume, R. (1989). From the patient’s point of view: My story. Journal of Cognitive Rehabilitation, 7(6), 6–7. Van Zomeren, A. H., & Van den Burg, W. (1985). Residual complaints of patients two years after severe head injury. Journal of Neurology, Neurosurgery, and Psychiatry, 48, 21–28. Ville, I. (2005). Biographical work and returning to employment following a spinal cord injury. Sociology of Health and Illness, 27, 324–350. Vitaliano, P. P., DeWolfe, D. J., Maiuro, R. D., Russo, J., & Katon, W. (1990). Appraised changeability of a stressor as a modifier of the relationship between coping and depression: A test of the hypothesis of fit. Journal of Personality and Social Psychology, 59, 582–592. Willer, B., Allen, K., Durnan, M. C., & Ferry, T. (1990). Problems and coping strategies of mothers, siblings, and young adults with traumatic brain injury. Canadian Journal of Rehabilitation, 3, 167–173.


CHAPTER 12

Functional and Psychosocial Aspects of Late-Onset Hearing Loss Charlene M. Kampfe

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he older population is one of the fastest growing cohorts in the United States (Dixon, Richard, & Rollins, 2003; Fernia, Zarit, & Johansson, 2001). This group typically has a higher incidence of disability (Cavanaugh & Blanchad-Fields, 2006; Hoyer & Roodin, 2003) and chronic health conditions (Dalen & Hartz, 2005; Sambamoorth, Shea, & Crystal, 2003; Smith, Catellier, Conlisk, & Upchurch, 2006) than have other age cohorts. One of the most common chronic conditions among this population is hearing loss (Hoyer & Roodin, 2003; Kampfe & Smith, 1997, 1998, 1999; Kampfe, Harley, Wadsworth, & Smith, 2007; Smith & Kampfe, 1997). The term often used to denote this condition is presbycusis (Brooks, 1989; McFarland & Cox, 1985; National Institute on Aging, 2008; Smith & Kampfe, 1996; Stein & Bienenfeld, 1992), although other terms also apply (e.g., late deafness, late-onset hearing loss) (Kampfe & Smith, 1998). All refer to the loss of hearing (at various levels of loss) in later adulthood. These terms will be used interchangeably in this chapter. Hearing loss has many psychosocial implications (both interpersonal and intrapersonal) that need to be addressed by family, friends, and service providers. This chapter provides a description of late-onset hearing loss, the functional and psychosocial aspects associated with such a loss, and strategies that can be used to deal with these issues. While focused on the U.S. experience, this chapter may provide guidance to other populations as well in that the experience of late-onset deafness may be quite similar across countries and cultures.

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BASIC INFORMATION ABOUT LATE-ONSET HEARING LOSS Although estimates vary, statistics show that older people have a high prevalence of hearing loss, and this prevalence increases with age. Approximately one-third of American people who are between ages 65 and 74 years have a hearing loss (National Institute on Aging, 2008). This percentage increases to approximately 40 percent to 50 percent of people aged 75 years or older (National Institute on Deafness and Other Communication Disorders, 2008) and approximately 50 percent for people aged 85 years and older (Cavanaugh & Blanchard-Fields, 2006; National Institute on Aging, 2008). Demographics regarding deafness show that among people who are aged 70 through 74 years, 5 percent are deaf and that among those aged 85 or older, 17 percent are deaf (Cavanaugh & Blanachard-Fields, 2006). Hearing loss tends to be more prevalent among men than women in the United States (Hoyer & Roodin, 2003; National Institute on Deafness and Other Communication Disorders, 2008). Another condition commonly experienced by older people is visual impairment (Hoyer & Roodin, 2003), affecting approximately 12 percent of men and 15 percent of women who are aged 65 or older (Hoyer & Roodin, 2003). Hearing loss and visual loss are often experienced simultaneously. Individually, hearing loss and visual impairment can create significant functional limitations, and therefore can have major impact on everyday life (Hoyer & Roodin, 2003; Kampfe & Smith, 1997, 1998; Smith & Kampfe, 1997). When experienced at the same time, they can create severe functional limitations. Although visual impairment is not the focus of this chapter, it will be referred to from time to time, because the simultaneous loss of hearing and vision can create great difficulty for people with these combined conditions. There are many causes of late-onset hearing loss, including the aging process itself (Brooks, 1989; National Institute on Aging, 2008; National Institute on Deafness and Other Communication Disorders, 2008), response to medications (Brooks, 1989; National Institute on Aging, 2008), noise exposure (National Institute on Aging, 2008), poor health (McFarland & Cox, 1985), heredity (McFarland & Cox, 1985; National Institute on Aging, 2008), zinc deficiency (Shambaugh, 1989), Ménière’s disease (Gant & Kampfe, 1997; Martin, 1994), heart conditions or stroke (National Institute on Aging, 2008), head injuries (National Institute on Aging, 2008), tumors (National Institute on Aging, 2008), and a combination of these conditions. These conditions typically result in a slow degeneration of the various aspects of the hearing mechanism (Stein & Bienenfeld, 1992). This degeneration is typically associated with the inner ear (i.e., cochlea) and the nerves leading to the brain. In other words, the loss is sensorineural (i.e., nerve damage) and results in inability to hear certain sounds and/or the distortion of the sounds that are heard (Brooks, 1989; Kampfe & Smith 1998; McFarland & Cox, 1985; National Institute on Aging, 2008; Williams, 1984). Presbycusis is typically degenerative and is acquired over a period of time (National Institute on Aging, 2008; Stein & Bienfenfeld, 1992). This slowly progressive loss may be one of the reasons that many older people may not be aware that they

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have a significant hearing impairment or that the hearing loss is as pervasive as it might be. Presbycusis is usually common in both ears (Williams, 1984); however, the severity and functional outcome of the loss may vary, based on the cause of the loss (Kampfe & Smith, 1998; National Institute on Aging, 2008). For example, a person with presbycusis may have an age related loss, a noise induced loss, or both (Kampfe & Smith, 1998). If this is the case, the ear that has been exposed to a particular damaging noise may be functioning at a lower level than the other ear. These differences in hearing may result in situations in which the person may hear sometimes and not at others, depending on which ear the speaker is speaking into. This often leads significant others to question whether the person has a hearing loss. Depending on the cause of the hearing loss, people often experience tinnitus (i.e., buzzing, whistling, hissing, roaring noise inside the head) (Kampfe & Smith, 1998, 1999; National Institute on Aging, 2008; National Institute on Deafness and Other Communication Disorders, 2008) that may be intermittent or persist over time (National Institute on Aging, 2008) and can be mild or severe (Hallberg & Erlandsson, 1993; Rothschild & Kampfe, 1997). This condition can have a negative impact on the ability to comprehend speech because the head noises interfere with the ability to hear speech sounds (Hallberg & Erlandsson, 1993; Kampfe & Smith, 1998; Kampfe & Smith, 1999). These sounds can also be a source of various degrees of stress and irritation (Hallberg & Erlandsson, 1993; Rothschild & Kampfe, 1997; Thomas, 1984). For example, an early study found that 28.5 percent of latedeafened adults considered tinnitus to be “distressing” or “very distressing” (Heath, 1987). People with late-onset hearing loss also sometimes experience vertigo (i.e., balance disturbance) (David & Trehub, 1989; Gant & Kampfe, 1997; Kampfe & Smith, 1998, 1999). Vertigo can be mild to severe; when extreme, this condition can create major issues for the individual (Hallberg & Erlandsson, 1993; Kampfe & Smith, 1999). For example, the person may not only lose the sense of balance but also experience nausea and vomiting from this sensation (Saeed, Birzgalis, & Ramsden, 1994). Obviously, tinnitus and vertigo along with hearing loss can be quite debilitating (Agnew, 1986; Gant & Kampfe, 1997; Hallberg & Erlandsson, 1993).

WHAT TO EXPECT Although the psychosocial impact of late-onset hearing loss will vary greatly from person to person (Kampfe & Smith, 1997, 1999; Stroebe, Hansson, & Stroebe, 1993), reduced ability to hear certain sounds, distortion of the sounds that are heard, tinnitus, and external ambient noise can have a significant impact on a person’s ability to interact with the environment and can lead to both intrapersonal (Kampfe & Smith, 1998) and interpersonal (Smith & Kampfe, 1997) difficulties. Perhaps an understanding of the various psychological functions of hearing (i.e., primitive level, signs or warning level, symbolic level) (Luey, 1980; Ramsdell, 1978) will facilitate an understanding the impact of its loss. These functions are described next.

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Primitive Level The primitive level of hearing is associated with an unconscious sense of (a) one’s own body sounds, such as the sounds of chewing, swallowing, breathing, sneezing, or body movements; and (b) environmental sounds, such as the creaking of chairs, the rattling of paper, the ticking of a clock, or the sound of a heating or cooling system. People with late-onset hearing loss may be unable to hear or understand these sounds and may therefore feel a sense of detachment from themselves and from the world around them. This sense of detachment might lead to a strong and pervasive feeling of isolation and perhaps “deadness” that is perhaps at an unconscious level (Kampfe & Smith, 1998; Luey, 1980; Ramsdell, 1978).

Signs or Warning Level The signs or warning level of hearing is associated with the conscious awareness of the environment beyond one’s vision (Ramsdell, 1978). It involves using hearing to alert individuals to that which is taking place around them (i.e., what is happening, where it is happening, and the extent to which it is happening). This awareness of the environment provides the opportunity for people to be prepared for and respond to environmental conditions. The distortion of sound associated with presbycusis results in difficulty in hearing and understanding environmental signals (Kampfe & Smith, 1998, 1999; Luey, 1980; Smith & Kampfe, 1996). That is, people with late-onset hearing loss may misunderstand the sounds around them. For example, people may think that they hear thunder when they are hearing desks being moved; they may think they are hearing screaming when they might be hearing a loud television program. Furthermore, people with late-onset hearing loss might not be able to hear these signals at all. Without accurate awareness of the signs or warning, one might have a sense of apprehension, vulnerability, and disorientation (Kampfe & Smith, 1998; Luey, 1980; Ramsdell, 1978); in fact, one may be more vulnerable to external threats because of the inability to recognize and respond to signals of threat (Federal Emergency Management Agency [FEMA], 1999; Kampfe & Smith, 1997; Smith & Kampfe, 1997). For example, burglar alarms are designed to alert people of potential danger in their homes or special signals are sent on the television to inform people of pending community disaster and fire. The risk of being injured or killed because of the inability to hear alarms is so great that FEMA (1999) published a document regarding this topic. Even the reduced ability to hear can present potential threats with regard to signs or warnings. Someone who has partial hearing or whose hearing is distorted could mistake the sounds of breaking and entering into their home as “house noises” rather than as a warning that their house was being entered illegally. The signs or warning level also apply to everyday signals. People use their hearing to discern that telephones, door bells, or alarm clocks are ringing (Kampfe & Smith, 1998). People with a hearing loss may not be able to hear these signals, and may therefore miss important messages or miss the


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opportunity to greet guests into the home. They might also miss important meetings because of they have no signal to awaken from a nap or from a night’s sleep. These missed opportunities can lead to unnecessary isolation. They may also leave the person with a low sense of personal control over their activities. The signs or warning level of hearing also involves the awareness of pleasant sounds such as music, the sounds of nature, the laughter of children, and relaxation tapes that can contribute to ascetic experiences and enjoyment. Persons with late onset hearing loss may therefore experience the loss of entertaining or soothing sounds that had previously enriched their lives (Kampfe & Smith, 1997; Smith & Kampfe, 1997; Luey, 1980; Ramsdell, 1978; Williams, 1984) or provided stress reducing opportunities (Kampfe & Smith, 1998). These conditions would likely decrease their quality of life and perhaps lead to mental health concerns. For example, a strong relationship has been found between reduced hearing acuity and depression in men (Butler & Lewis, 1982).

The Symbolic Level The symbolic level of hearing is associated with communication (Ramsdell, 1978). It involves using hearing both to comprehend what others are saying and to monitor one’s own speech sounds. In other words, it is a vital link between the individual and other people. People with presbycusis typically experience the decreased or lack of ability to hear high-frequency sounds (Brooks, 1989; Kampfe & Smith, 1998; McFarland & Cox, 1985; Smith & Kampfe, 1996). These high-frequency sounds are vital to understanding speech, because important speech sounds such as consonants (e.g., “m,” “b,” “l”) are usually produced at high frequencies (Hallberg, Erlandsson, & Carlsson, 1992). Furthermore, many important speech sounds such as “p,” “f,” and “h” are breathy and difficult to hear (i.e., they do not use the voice and are not loud); many of them look similar on the mouth and lips. The result is that one of the most difficult tasks for people with late-onset hearing loss is understanding what other people are saying (Hallberg et al., 1992; Kampfe & Smith, 1998; Smith & Kampfe, 1996). The following illustration will provide insight into the difficulties associated with this condition. This demonstration will require the reader to engage in a brief directed activity. Imagine listening to the news on the radio with the sound at normal volume. Now imagine that the radio station experiences difficulties and the speech of the newsperson is distorted (a sort of garbled sound), so that no matter how loudly you increase the volume, the radio is out of tune. Now imagine that another person turns on a fan that buzzes. And now imagine that three people walk into the room and are talking about a recent event. One of these people is wearing a bracelet that jingles when she moves her hand. It is obvious that the message from the original radio news program would be very difficult (if not impossible) to understand. It might be so difficult that you would just turn it off. These conditions may be similar to the experience of the person with presbycusis. It should be noted, however that because presbycusis has many different causes, it also has different ways of presenting itself; therefore, it is important to remember that that no two

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hearing losses are the same. The example in this paragraph, therefore, may not be true for all people with presbycusis. People with presbycusis may also have distorted speech themselves, because they are unable to hear certain of their own speech sounds, especially sounds such a “sh,” “p,” “f,” and “th.” Likewise, they may be unable to monitor their speech volume, resulting in louder or softer voices than necessary (Kampfe & Smith, 1998). These distortions or volume problems are typically seen in persons who have had a hearing loss for a considerable time (Silverman & Calvert, 1978). Having such speech and hearing issues may have an influence on other people’s willingness to communicate with them or on service providers’ perceptions of the intellectual abilities of the individual. These conditions might also lead to more simplistic, concrete, communications that are less fulfilling than those prior to their hearing losses (Kampfe & Smith, 1998). Because of the problems associated with speech understanding, conversations may loose their richness and complexity, leaving people with a late-onset hearing loss with a loss of intellectual or collegial interaction with others that they might previously have enjoyed (Kampfe & Smith, 1998) or the inability to access medical or counseling services (Smith & Kampfe, 1996). They might also be unable to access the news and be involved in family interactions and medical discussions, leaving them out of the loop or left out of important family roles or decisions (Kampfe & Smith, 1997). Inability to communicate via the telephone may result in further isolation from family, friends, and the community (Smith & Kampfe, 1996). All of these situations might result in fewer opportunities to be informed, sympathize with others, understand another’s point of view, play, and engage in meaningful interactions. Frequent miscommunication and isolation (i.e., decreased contact with friends and family) may occur and result in feelings of helplessness, anger, resentment, frustration (Kampfe & Smith, 1998, 1999; Orlans, 1987), loneliness, and disaffiliation (Kampfe & Smith, 1997, 1999; Smith & Kampfe, 1997). Furthermore, hearing problems may result in increasing reliance on family and friends to (a) provide important information or (b) interact with entities that the hearing-impaired person previously interacted with. Because of this, a previously independent individual might become increasingly dependent on others, losing his or her autonomy (Smith & Kampfe, 1997). Another potential danger is psychological misdiagnosis made by a psychologist or physician who misinterprets a person’s lack of understanding of and inappropriate responses to speech and other sounds. The danger is that the hearing-impaired person may be viewed as having a cognitive or behavioral problem rather than the lacking the ability to discern speech or environmental sounds (Kampfe & Smith, 1999; Thomas, 1984). Based on all of these potential problems, it is clear that loss of or decrease in the ability to fully communicate with others can have a significant and devastating negative influence on a person’s interpersonal and intrapersonal of life (Brinson, 1983; Kampfe & Smith, 1998; 1999; Smith & Kampfe, 1997). The effort to hear and understand speech and environmental sounds takes a great deal of concentration and energy (Kampfe & Smith, 1998; Orlans, 1987; Rezen & Hausman, 1985; Thomas, 1984) and may result in fatigue


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(Kampfe & Smith, 1998; Smith & Kampfe, 1997). This requirement of energy in older people with hearing loss may be accompanied by a generally lower level of energy due to the aging process or the extra energy needed to deal with other medical conditions that older people may have (Smith, 1986). Furthermore, the stress of having to cope with their own and their friends’ and families’ reactions to their hearing loss and with the potential multiple changes that older people experience (Bayles & Kasniak, 1987), such as additional disabling conditions, may require additional energy. The result may be exhaustion and perhaps a refusal or inability to continue to try to communicate (Kampfe & Smith, 1998; Thomas, 1984).

WHAT TO DO: COPING WITH THE FUNCTIONAL AND PSYCHOSOCIAL ASPECTS OF LATE-ONSET HEARING LOSS Strategies to Enhance the Primitive Level of Awareness Almost nothing has been written about enhancing the primitive level of awareness. Some suggestions for becoming aware of one’s own body noises might simply be to touch one’s body to feel breathing and heartbeat. Another is to remember that one cannot hear certain body noises that are unacceptable to the public and to be careful to find private places to make such noises. Suggestions for soft environmental cues might be to use vision to a greater extent than usual or ask others to provide information about entering or exiting rooms or premises.

Strategies to Enhance the Signs or Warning Level of Awareness As indicated earlier, hearing is used to warn or signal a person of the events that occurring in the environment. People use their hearing to recognize the sounds of alarm clocks, door bells, telephones, or answering machines. They also use their hearing to protect them from impending danger. Because the traditional telephone, along with ringers and answering machines, may not be appropriate for people with a hearing loss, alternate assistive technology might be necessary. There is a wide range of telecommunication equipment available, often at no cost, for people with a hearing loss. Traditional alarm clocks, smoke detectors, fire alarms, and door bells might also be useless to people with a hearing loss (Kampfe & Smith, 1999; National Institute on Aging, 2008). As with telecommunication, there is a wide range of alternative signal or warning devices (Kampfe & Smith, 1999). Because of the broad range of functional problems associated with presbycusis, the various types of hearing aids or cochlear implants, the wide range of comfort levels with technology, and the broad array of devices that are available, it is important for individuals to select technology that matches their needs. Information about such equipment can be obtained via the Job Accommodation Network, local community services for the deaf and hard of hearing, the National Institute on Deafness and Other Communication Disorders (NIDCD), and an otologist (ear doctor). It is perhaps most helpful to visit local nonprofit

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agencies because they typically have examples of equipment that individuals can examine to determine which are most appropriate for their needs. In addition to specialized devices that have been designed for people with a hearing loss, much of the current technology that is available to the general public is very appropriate for people with hearing loss. The Internet, e-mail, text messaging, and many other modalities have opened the communication world to people who previously had considerable difficulty in accessing information. The key to successful use of technology is level of comfort and possible training for the person who plans to use it. Rehabilitation technologists have learned that a fantastic piece of technology may go unused if the individual is not comfortable with it or does not fully understand how to use it. As indicated, people with hearing loss or who are deaf may not be able to hear important, life-saving signals (FEMA, 1999). Because conventional smoke alarms are not often usable by people with a hearing loss, specialized smoke alarms should be considered. Unfortunately, people do not typically install such alarms due to the high cost, relative unavailability, or lack of awareness that such alarms exist (U.S. Fire Administration, 1999). Information about these and other such fire safety issues can be obtained from FEMA in the Fire Risk series (FEMA, 1999).

Strategies Enhancing the Symbolic Level Communication can be enhanced when the person with presbycusis, family members, friends, and service providers are aware of the conditions that enhance or interfere with the ability to hear. Some of these conditions have to do with the environment, characteristics of the speaker, and personal conditions of the person with presbycusis.

Environment The ability to hear is influenced a great deal by the environment (Thomsett & Nickerson, 1993; Kampfe & Smith, 1998, 1999). One environmental condition that can create problems is extraneous or ambient noise that is made while the person is trying to hear a particular speaker or sound (Hallberg et al., 1992; Kampfe, 1990; Kampfe & Smith, 1998, 1999; Smith & Kampfe, 1996). Such extraneous noise can include the sounds of machines (e.g., fans, cars, heaters, medical equipment such as nebulizers or oxygen machines), background conversations made by people who are within hearing distance (e.g., social gatherings where other people are speaking simultaneously in one or more small groups), and music or programs via electronic communications (e.g., radio, television, computer, CDs). The implication is that individuals who wish to communicate with people who have presbycusis should do what they can to avoid background noise (Kampfe, 1990; National Institute on Aging, 2008; Smith & Kampfe, 1996). For example, if a hearing-impaired person is using a nebulizer (i.e., a breathing treatment machine) or an oxygen machine, the speaker should either wait speak until the machine has been turned off or ensure that the person understands what is being said when the machine is on (i.e., use writing and


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face the person directly). When speaking, it is a good practice to turn off noisy machines such as fans, dishwashers, televisions, and radios. It is helpful to pad or oil appropriate equipment (Kampfe, 1990). It is also helpful to meet with the person who has a hearing loss in places that do not involve groups of people who might be speaking simultaneously. For example, if one is at a party, the speaker may invite the person into a side room for conversation. Likewise, in medical or other service offices, professionals, receptionists, and facilities management staff can apply these strategies. People with presbycusis can also control their environment by engaging in these activities or asking significant others to do so. Environmental noise can be controlled by using soft surfaces on walls, ceilings, floors, furniture, and windows. These types of surfaces attenuate ambient noise, helping people focus on the speaker’s words. Examples of materials that can be used are textured wallpaper, soft textured ceiling tiles, carpeting, cloth-covered and padded furniture, and window curtains or draping (Kampfe, 1990; Kampfe & Smith, 1999; Smith & Kampfe, 1996). Another environmental condition that can create problems for people with presbycusis is poor lighting (Kampfe, 1990; Kampfe & Smith 1999; National Institute on Aging, 2008; Smith & Kampfe, 1996, 1997). Lighting is vital in communication because it allows the person to view the mouth of the speaker and pick up other hand or facial gestures that the speaker makes. Dim light, glaring light, flickering light, and light that shines directly into the listener’s face can be problematic (Kampfe, 1990; Kampfe & Smith, 1999; Smith & Kampfe, 1995, 1997). The implication is that the speaker must make every attempt to keep the light source on his or her own face and behind the person with a hearing loss. For example, when speaking to a person with a hearing loss, the speaker should set up the room so that windows or lights are not behind the speaker because this situation creates a glaring effect into the eyes of the listener who is using facial cues and lips to understand the conversation (Kampfe, 1990). One practical suggestion is simply to ask the person if the light is bothering him or her, or set chairs in strategic locations so that the light is on the speaker. Again, people with presbycusis may assert that speakers be more aware of appropriate and inappropriate lighting and ask that their environments be adjusted to fit their needs.

Characteristics of the Speaker Characteristics of the speaker can also influence the hearing impaired person’s ability to understand speech. Because it is vital that the listener be able to see the speaker’s face (Kampfe, 1990; Kampfe & Smith, 1997, 1998, 1999; National Institute on Aging, 2008), it is important for the speaker to look directly at the listener (Kampfe & Smith, 1999; National Institute on Aging, 2008; Smith & Kampfe, 1996). It is also important to avoid (a) looking down (Kampfe & Smith, 1999), (b) wearing facial hair or allowing hair to cover the face (Kampfe, 1990; Kampfe & Smith, 1999), (c) exaggerating mouth movements (Kampfe, 1990), (d) placing hands or objects in front of the face (Kampfe, 1990), and (e) eating food or chewing gum when speaking (Kampfe & Smith, 1999; National Institute on Aging, 2008; Smith & Kampfe, 1996).

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Because some sounds, words, and phrases are less easy to hear or see on the lips, it is a good practice to use full phrases instead of single words and rephrase a sentence (i.e., use different words and phrases) rather than repeat a phrase that a person does not understand (Kampfe, 1990; National Institute on Aging, 2008). It is also helpful to ensure that the individual understands the topic being discussed so that he or she can use contextual cues to follow content (Kampfe, 1990). Likewise, it is important to avoid quick topic switching during a conversation. The use of nonverbal cues such as pointing to objects being discussed can be helpful in identifying the topic or clarifying the communication (Kampfe, 1990; Smith & Kampfe, 1996). Because people with late-onset hearing loss have problems with high frequencies and fast speech, it is a good practice to lower the pitch of one’s voice, speak somewhat more slowly, and enunciate clearly (Kampfe, 1990; National Institute on Aging, 2008). Because people with a hearing loss may have difficulty with hearing the “tone” of a conversation (e.g., friendly or not), the speaker should practice using facial expressions that match their sentiment (Kampfe, 1990; National Institute on Aging, 2008). For some information exchange, written messages may be necessary (Smith & Kampfe, 1996). For example, a nursing home might provide a list of meal choices for each meal that can be distributed to the table rather than simply asking which of the choices a person might desire. Because people with late onset hearing loss are sometimes excluded from conversations or are talked about rather than talked to, friends and family members can be mindful of including them in conversations. This practice can ameliorate the feelings of aloneness and exclusion that some people with hearing loss can experience (National Institute on Aging, 2008). Another helpful practice is to ask the person about the communication strategies that work best for him or her and then to try to use these (Kampfe, 1990; National Institute on Aging, 2008; Smith & Kampfe, 1996). Doing this might contribute to the sense of empowerment in the hearing-impaired person, who might be experiencing disempowering situations in other settings. Because hearing people sometimes become impatient and irritated with being misunderstood or with having to repeat themselves, it is important to try to remain patient (Kampfe, 1990), positive, and relaxed in conversation (National Institute on Aging, 2008). It is also important to realize and to accept that communication with a person who has a hearing loss typically takes longer than with a hearing person (Kampfe & Smith, 1999).

Personal Characteristics of the Person with Presbycusis Personal characteristics of the person with presbycusis may also influence the ability to understand what is being said. The person’s unique hearing ability, energy level (Luey, 1980; Orlans, 1987; Thomsett & Nickerson, 1993), medications taken (Thomsett & Nickerson, 1993), familiarity with the topic of conversation (Kampfe, 1990; Thomsett & Nickerson, 1993), familiarity with the speaker (Orlans, 1987; Thomsett & Nickerson, 1993), visual acquity (Brinson, 1983), and type and level of tinnitus (Hallberg & Erlandsson, 1993; Kampfe & Smith, 1998, 1999) may all influence the ability to hear at any particular time.


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Some people with hearing losses tend to shake their heads “yes” in an effort to concentrate on what is being said. These positive head shakes can be misunderstood by the hearing speaker to mean that the person has understood what is being said. It is therefore prudent not to assume that such head shaking means that the message has been understood (Kampfe, 1990; Kampfe & Smith, 1999). As mentioned earlier, people with late-onset hearing loss may feel exhausted because of the energy it takes to communicate with others and because of a variety of other factors. Friends, family members, and service providers can help by recognizing and respecting the amount of energy required and can give the person the opportunity to rest when necessary. One sign that the individual is becoming exhausted is a reduced ability to comprehend what is being said. In other words, not only does the attempt to listen cause fatigue, fatigue can affect a person’s ability to understand speech (Butler & Lewis, 1982). It is therefore important to be aware of and to compensate for potential fatigue. People with a hearing loss and those people associated with them can be mindful of the need for rest and construct opportunities in which this is possible. As indicated, some individuals may have both a hearing loss and visual impairment. For this reason, it is important that any written materials match the needs associated with the vision loss. In the example given regarding written materials, the nursing home might provide the meal choices in large, dark print that is easy to see. It is also important for individuals with a hearing loss to have had a recent visual assessment (Kampfe & Smith, 1999). Because tinnitus can interfere with the ability to comprehend speech, it will be important to identify strategies that can reduce the head sounds associated with this condition. Alcohol, smoking, and loud noise tend to accentuate tinnitus; therefore, it has been recommended that these be avoided (National Institute on Aging, 2008). Other suggestions for dealing with tinnitus will probably not help the individual comprehend speech but may give some relief from the head noises that often are quite annoying. The introduction of other sounds such as music or white noise might offer some relief. One instrument that is sometimes helpful is a “masker.” This is a small device that produces other sounds, such as white noise, that masks the head noises (National Institute on Aging, 2008; Vernon, 1994). Another group of treatment strategies involves stress-reducing activities, such as meditation, biofeedback, and other relaxation techniques (Kampfe & Smith, 1999; Katon, Sullivan, Russo, Dobie, & Sakai, 1993; Wineburg, 1994). It might also be helpful to contact American Tinnitus Association to gain support and information (Kampfe & Smith, 1999). Because tinnitus can be caused by a broad array of other physical problems, it is also wise to consult with a physician to rule out conditions such as high blood pressure, middle ear infection, tumor, reaction to medication, and so on (Kampfe & Smith, 1999; Rothschild & Kampfe, 1997). Although vertigo is less common for people who have late-onset hearing loss (Kampfe & Smith, 1999), it can be very debilitating. Organizations such as the Meniere’s Network or the Vestibular Disorders Association and local balance disorder clinics can be of assistance in learning more about this condition and how to control it (Kampfe, 1999).

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The degree of assertiveness that the person has with regard to making his or her needs known is also a factor. People who are willing to do the following may be more likely to improve their communication with others: (a) inform people that they have a hearing loss; (b) ask people to face them, speak more slowly, enunciate more clearly, and to speak without raising their voice levels; (c) inform people that they do not understand rather than allowing them to continue; (d) ask people to reword a sentence when the meaning is not clear (National Institute on Aging, 2008); and (e) request that the speaker clarify the topic at the beginning of a conversation. It is also helpful to focus on people’s faces and observe their emotional expressions (National Institute on Aging, 2008). When the hearing-impaired person is not certain that he or she has understood a message, it is sometimes helpful to repeat or paraphrase it for the speaker to be sure that the message was understood (Kampfe, 1999).

CONCLUSION The older population is one of the fastest growing age groups in the United States. Hearing loss is experienced by a large proportion of people in this group. Because hearing loss can create problems at several levels of functioning (i.e., primitive level, signs or warning level, and symbolic level), this condition has interpersonal and intrapersonal implications. In recent years, many devices and techniques have been designed to ameliorate some of the issues associated with hearing loss; however, some people may not be aware of these. The purpose of this chapter was to inform the reader of these issues and suggest strategies that can be used to assist older persons who have acquired a hearing loss in adapting to that loss. The basic concepts in this chapter apply to anyone having late-onset hearing loss. Hearing loss can take many forms. It is sometimes undetected by the individual because it often occurs slowly over time. It can have devastating effects on people’s interpersonal and intrapersonal lives, and it can pose potential physical threats to the person with a loss. Likewise, the strategies to improve communication can be applied across populations. For example, it is important for the person with a hearing loss to see the speaker’s face, be in a quiet space when listening to a speaker, have the opportunity to ask for rephrasing of a statement, and be treated with patience in communication.

REFERENCES Agnew, J. (1986). Tinnitus: An overview. Volta Review, 88, 215–221. Bayles, K. A., & Kasniak, A. W. (1987). Communication and cognition in normal aging and dementia. Boston: Little Brown. Brinson, W. S. (1983). Speechreading in practice. In W. J. Watts (Ed.), Rehabilitation and acquired deafness (pp. 205–218). London: Croom Helm. Brooks, D. (1989). The adult hearing-impaired. In D. N. Borrks (Ed.), Adult aural rehabilitation (pp. 1–17). London: Chapman & Hall. Butler, R. N., & Lewis, M. I. (1982). Aging and mental health: Positive psychosocial and biomedical approaches. St. Louis: Mosby. Cavanaugh, J. C., & Blanchard-Fields, F. (2006). Adult development and aging (5th ed.). Belmont, CA: Wadsworth/Thomson Learning.


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Dalen, J. E., & Hartz, D. J. (2005). Medicare prescription drug coverage: A very long wait for a very modest benefit. American Journal of Medicine, 118, 325–329. David, M., & Trehub, S. E. (1989). Perspectives on deafened adults. American Annals of the Deaf, 133, 200–204. Dixon, C. G., Richard, M., & Rollins, C. W. (2003). Contemporary issues facing aging Americans: Implications for rehabilitation and mental health counseling. Journal of Rehabilitation, 69(2), 5. Federal Emergency Management Agency. (1999). Fire risks for the deaf or hard of hearing. Fire Risk Series. FEMA, U.S. Department of Homeland Security. Fernia, E. E., Zarit, S. H., & Johansson, B. (2001). The disablement process in very late life: A study of the oldest-old in Sweden. Journal of Gerontology: Psychological Sciences, 56B, 12–23. Gant, N. D., & Kampfe, C. M. (1997). Psychosocial challenges faced by persons with Meniere’s disease. Journal of Applied Rehabilitation Counseling, 28, 40–49. Hallberg, L. R-M., & Erlandsson, S. I. (1993), Tinnitus characteristics in tinnitus complainers and noncomplainers. British Journal of Audiology, 27, 19–27. Hallberg, L. R-M., Erlandsson, S. I., & Carlsson, S. G. (1992). Coping strategies used by middle-aged males with noise-induced hearing loss, with and without tinnitus. Psychology and Health, 7, 273–288. Heath, A. (1987). The deafened-Aspeil group. In J. G. Kyle (Ed.), Adjustment to acquired hearing loss: Analysis, change, and learning (pp 163–168). Bristol: University of Bristol. Hoyer, W. J., & Roodin, P. A. (2003). Adult development and aging (5th ed.). New York: McGraw-Hill. Kampfe, C. M. (1990). Communicating with persons who are deaf: Some practical suggestions for rehabilitation specialists. Journal of Rehabilitation, 556, 41–45. Kampfe, C. M., & Smith, S. M. (1997). Older persons’ psychological reactions to presbycusis. Southwest Journal of Aging, 13, 53–59. Kampfe, C. M., & Smith, S. M. (1998). Intrapersonal aspects of hearing loss in persons who are older. Journal of Rehabilitation, 64, 24–28. Kampfe, C. M., & Smith, S. M. (1999). Late-onset hearing loss: Strategies for effective counseling. ADULTSPAN Journal, 1, 32–49. Kampfe, C. M., Harley, D. A., Wadsworth, J. S., & Smith, S. M. (2007). Methods and materials for infusing aging issues into the rehabilitation curriculum. Rehabilitation Education, 21, 107–115. Katon, W., Sullivan, M., Russo, J., Dobie, R., & Sakai, C. (1993). Depressive symptoms and measures of disability: A prospective study. Journal of Affective Disorders, 27, 245–254. Luey, H. S. (1980). Between worlds: the problems of deafened adults. Social Work in Health Care, 5, 253–265. Martin, F. (1994). Introduction to audiology (5th ed.). Englewood Cliffs, NJ: Prentice Hall. McFarland, W., & Cox, B. P. (1985). Aging and hearing loss: Some commonly asked questions. Washington, DC: National Academy of Gallaudet College. National Institute on Aging. (2008). Age page, hearing loss. Retrieved January 27, 2008, from www.niapublications.org’agepages/hearing.asp. National Institute on Deafness and Other Communication Disorders. (2008). Statistics about hearing disorders, ear infections, and deafness. Retrieved January 27, 2008, from www.nided.nig.gov/health/statistics/hearing.asp. Orlans, H. (1987). Sociable and solitary responses to adult hearing loss. In J. G. Kyle (Ed.), Adjustment to acquired hearing loss: Analysis, change and learning (pp. 95–112). Bristol: University of Bristol.

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Ramsdell, D. A. (1978). The psychology of the hard-of-hearing and deafneded adult. In H. Davis & S. R. Silverman (Eds.), Hearing and deafness (4th ed.) (pp. 499– 510). New York: Holt, Rinehart, & Winston. Rezen, S. V., & Hausman, C. (1985). Coping with hearing loss: A guide for adults and their families. New York: Demdner. Rothschild, M., & Kampfe, C. M. (1997). Issues associated with late onset deafness. JADARA: Journal for Professionals Networking for Excellence in Service Delivery with Individuals Who Are Deaf and Hard of Hearing, 31, 1–16. Saeed, S. R., Birzgalis, A. R., & Ramsden, R. T. (1994). Meniere’s disease. British Journal of Hospital Medicine, 51, 603–612. Sambamoorth, U., Shea, D., & Crystal, S. (2003). Total and out-of-pocket expenditures for prescrirption drugs among older persons. Gerontologist, 43, 345–359. Shambaugh, G. E. (1989). Clinical vignette: Zinc: The neglected nutrient. American Journal of Oncology, 10, 156–160. Silverman, R. S., & Calvert, D. R. (1978). Conversation and development of speech. In H. Davis & R. S. Silverman (Eds.), Hearing and deafness (pp. 388–399). New York: Holt, Rinehart, & Winston. Smith, S. M. (1986). Rehabilitation, aging and employment: Perspectives for the rehabilitation counselor and employer: An action paper. Rehabilitation and Aging (Mary Switzer Monograph no. 11). Washington, DC: National Rehabilitation Association. Smith, S. M., & Kampfe, C. M. (1996). Creating a user-friendly counseling office environment for older persons with hearing impairments. Arizona Counseling Journal, 21, 21–26. Smith, S. M., & Kampfe, C. M. (1997). Interpersonal/relationship implications of hearing loss in persons who are older. Journal of Rehabilitation, 63, 15–21. Smith, S. R., Catellier, D. J., Conlisk, E. A., & Upchurch, G. A. (2006). Effect on health outcomes of a community-based medication therapy management program for seniors with limited incomes. American Journal of Health-System Pharmacy, 63(4), 372–379. Stein, L. M., & Bienenfeld, D. (1992). Hearing impairment and its impact on elderly patients with cognitive, behavioral, or psychiatric disorders: A literature review. Journal of Geriatric Psychiatry, 25, 145–156. Stroebe, M. S., Hansson, R. O., & Stroebe, W. (1993). Contemporary themes and controversies in bereavement research. In M. S. Stroebe, W. Stroebe, & R. O. Hansson (Eds.), Handbook of bereavement: Theory, research and intervention (pp. 457–475). Cambridge: Cambridge University Press. Thomas, A. (1984). Acquired hearing loss: Psychological and psychosocial implications. London: Academic Press. Thomsett, K., & Nickerson, E. (1993). Missing words: The family handbook on adult hearing loss. Washington, DC: Gallaudet University. U.S. Fire Administration, Federal Emergency Management Agency. (1999). Fire stops with you: Fire risks for the visually impaired, deaf and hard of hearing, and older adults. Washington, DC: Author. Vernon, J. G. (1994). Questions and answers about tinnitus. Tinnitus Today: Excerpts and Articles of Interest, p. 5. Williams, P. S. (1984). Hearing loss: Information for professionals in the aging network. Washington, DC: Gallaudet College/National Information Center on Deafness. Wineburg, E. (1994). Tales of tinnitus and recovery. Tinnitus Today: Excerpts and Articles of Interest, p. 8.

CHAPTER 13

Disability in Islam: Insights into Theology, Law, History, and Practice Isra Bhatty, Asad Ali Moten, Mobin Tawakkul, and Mona Amer

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eliefs about disability and reactions toward people with disabilities have differed across regions, cultures, and eras. Religion has been one of the central factors that has shaped these differing perceptions and practices via the maxims outlined in religious texts, law, and tradition. Although attitudes toward people with disabilities have been documented for other faiths, little has been written about Islam. This chapter provides a general understanding of the Islamic view on disability by examining Islam’s primary sources—the Qur’an and Sunnah (the record of the sayings and actions of the Prophet Muhammad)—as well as legal texts written by scholars of Islam. After a brief overview of the Islamic faith, the chapter proceeds with an explanation of related terminology and a brief discussion of various historical perceptions of disability. The main sections include an examination of the Islamic position on health, illness, and disability, and an explanation of how Islamic law and society treat individuals with mental, physical, and sensory disabilities. The chapter concludes with insights into the conditions of disabled populations in Muslim countries today. Although this chapter is by no means an exhaustive review of the subject, we hope that it provides everyday readers with a grasp of the Islamic view of disability. The chapter has special relevance for those readers who regularly interact with Muslims on a professional or personal level worldwide, especially those who work with Muslims with disabilities and who would like a greater understanding of the faith.

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OVERVIEW OF ISLAMIC FAITH Islam is a monotheistic, Abrahamic faith and is the world’s second largest religion after Christianity. The adherents of Islam are called Muslims, and there are an estimated 1.2 billion Muslims today, with some estimates even higher (Rauf, 2003). In Arabic, the word Islam means “submission to will of God” and has the same linguistic root as the Arabic word for peace. According to Muslims, Islam is not a new religion but rather a continuation of the truth that God (in Arabic, Allah) revealed to all of His prophets, beginning with Adam and including Abraham, Ishmael, Isaac, Moses, Jesus, and the last messenger, Muhammad, who reaffirmed and finalized the eternal message. As a sign of reverence to these prophets of God, Muslims follow any mention of their names with, “May peace be upon them.” Muslims follow the divine revelations that God sent down to Muhammad through the angel Gabriel between the years 610 to 632 CE in the cities of Mecca and Medina, found in present-day Saudi Arabia. Muhammad, an orphan, came from the prominent tribe of Quraysh, which had helped Mecca become a major commercial, cultural, and religious center in the Middle East. Arabia at the time of Muhammad was overwhelmingly tribal, and notions of honor, heritage, and revenge were dominant (Hallaq, 2005). In contrast to the tribal authority, several of the first revelations given to Muhammad advocated for an egalitarianism system in which all human beings are seen as created equal before one God. All people from all nations are bound together into one body—a worldwide community known as the ummah. The revelations also emphasized the importance of fulfilling the needs of the underprivileged segments of society, which included slaves, orphans, and the poor, and granted women unparalleled rights such as rights to own property, earn an income, participate in the political process, and marry according to one’s choice. One of the central messages of Islam was that every human being would be held accountable for their beliefs and actions on the day of judgment, when their eternal fate—Heaven or Hell—would be determined by the Lord. The divine revelations of Islam are recorded in the Muslim holy book, the Qur’an, which consists of 114 chapters. The Qur’an is recorded in classical Arabic, the language spoken by Muhammad and his companions. According to Muslims, the Qur’an presents a universal message that transcends both time and place, and its text has been preserved absolutely since revelation, transmitted both textually and orally via memorization (Al-Faruqi & AlFaruqi, 1986). Muslims turn to the Qur’an as the primary source of information about religious duties as religious laws related to family life, business relationships, and crime. As explicated in the Qur’an, the essence of Islam is the concept of tawhi-d, the belief in the one and only God. Tawhi¯d ensures that Muslims believe that God is one, without partners; He is absolute, transcendent, lord of all the worlds, and the creator of all animate and inanimate matter ranging from the atomic to the macroscopic (Al-Faruqi & Al-Faruqi, 1986). A Muslim’s confirmation of tawhi¯d and affirmation that Muhammad is the last prophet constitutes one of the five main pillars of Islam: the declaration of faith known

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as Shaha-dah. The other pillars of Islam include Zaka-t, the charitable giving of 2.5 percent of one’s wealth annually; Sala-t, the five daily ritual prayers; Sawm, the daily fasting from sunrise to sunset during the Islamic lunar month of Ramadan; and Hajj, the pilgrimage to Mecca once during a lifetime for those who are physically or financially able. All of these five pillars of Islam help Muslims purify their souls, remain obedient to God, and participate in communal life. The five pillars of Islam are described in the Qur’an, with more detailed information about implementing these practices obtained from the Sunnah. The Sunnah, which refers to the practices and deeds of Muhammad, is thus the second source of Islamic law. Every unit or narrative of the Sunnah that conveys a recorded report about the prophet is called a hadi th (plural: aha-di th). The purpose of aha-di th is to clarify the Qur’an’s pronouncements and exemplify and illustrate its purposes (Al-Faruqi & Al-Faruqi, 1986). Aha-dith were collected by Muhammad’s companions and later verified by Islamic legal scholars subsequent to the death of Muhammad in 632. To aid in interpreting the Qur’an and aha-dith on various topics, Muslim jurists also have used the tools of qiya-s (analogy) and ijma-’ (consensus). The resulting jurisprudence is called fiqh (Hallaq, 2005). Four major schools of jurisprudence (named after their respective founding jurists: Hanafi, Malaki, Shafi’i, Hanbali) emerged in the classical Islamic period and survive until today. Together, they feature pluralistic interpretations on some issues of religious and civil life. In this respect, Islamic law is different than the common law or civil law systems found in Europe and North America, as it is more of a “scholarly discourse” than a “uniform and unequivocal formulation of the law” (Peters, 2005, p. 1).

DISABILITY TERMINOLOGY Defining disability, as the English-speaking world currently considers the term, has proven troublesome for those creating laws or policies throughout history. In the United States, the general definition of disability comes from the preeminent legislation on the subject, the Americans with Disabilities Act (ADA) of 1990, which defines a disability as: 1. a physical or mental impairment that substantially limits one or more of the major life activities [e.g., speaking, walking, hearing], 2. a record of such an impairment, or 3. being regarded as having such an impairment. (as cited in Rothstein & Rothstein, 2006, p. 38) In contrast, the Arabic terminology governing Islamic law, both classical and contemporary, generally lacks such a broad and encompassing term for disability. Moreover, the classical sources of Islamic law, namely, the Qur’an1 and aha-di th,2 do not identify one particular term to encompass the impairments associated with the general notion of disability. Instead, these sources use specific terms for describing various individuals with disabilities, including the blind (a’ma-), deaf (asamm), mute (abkam or akhras), lame (a’raj), or insane (majnu¯n) (Bazna & Hatab, 2005; Rispler-Chaim, 2007). Classical

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sources, particularly the Qur’an and aha-di-th, do contain several generalized adjectives to describe disadvantaged individuals, including orphan (yateem), weak (da’i f), oppressed (mustad’af), traveling (‘ala safar or ibn us-sabi l), indigent (miski n), sick (mari d), and needy (faqi r). Both sets of terms—those that refer to specific individuals and those that refer to classes of individuals—emerged in the classical sources within several contexts including excusing certain individuals from religious duties (e.g., Qur’an 24:61), using a metaphorical likening of spiritual transgressions or deficiencies to physical deficiencies (e.g., Qur’an 2:17–18), encouraging people to serve the disadvantaged segments of society (e.g., Qur’an 4:75), or providing a statement of equality. It is worth noting, however, that while classical sources—the Qur’an, aha-di th, as well as fiqh (jurisprudence)—may not have used an Arabic equivalent to the English disability, there is some indication that the broader group terms mentioned above overlapped to include various individuals with disabilities. Specifically, the Arabic term mari d, which would literally be translated as “ill” or “individual with an illness,” and its noun form marad (illness) are often used in the classical sources as broad class terms that include individuals and conditions that today would fall under the umbrella of disability, such as paralysis or amputation. An example of this categorization in the Qur’an can be found in 24:61: “There is no blame on the . . . sick” (Ali, 1992, p. 885). One hadi th example is: “If anyone of you leads people in prayer, he should shorten it for amongst them are the weak, the sick and the old” (Hadith alBukhari, 1:11:671). The words mari d and marad are frequently mentioned in books of fiqh in descriptions of the various religious duties, such as fasting, praying, and completing the Hajj pilgrimage. Contemporary Arabic law and literature in the Muslim world, in contrast, utilizes broader terms, such as as-ha-b ul-’ahat, dhawul ‘ahat, mu’awwaqu¯n, or ‘a-jizu¯n, to refer to individuals with disabilities in a manner similar to the English usage (Rispler-Chaim, 2007). These terms are derived from the Arabic roots for words such as defect, limitation, difficulty, inability, or weakness. The term mu’awwaqu¯n, for example, refers to individuals somehow limited in their physical or mental ability—very similar to the English phrase “mentally or physically challenged”—and is commonly used in legal treatises on the subject in the Muslim world (Rispler-Chaim, 2007). Two conclusions about the Islamic perspective on disability emerge from this discussion of disability terminology in the legal sources of Islam. First, the lack of a term comparable with disability in the classical Islamic sources affirms the moral neutrality and normalcy of disability as a fact of life. There is no stigma or evil associated with any term to describe individuals with disabilities. Indeed, the words used are entirely descriptive. Moreover, whereas the English term disability contains an explicit denotation of “lacking ability” and is laced with a negative connotation, the classical Arabic words do not contain an indication of “absence,” thereby avoiding the creation of an implicit norm that excludes disability. Second, the classical sources recognize disability in the context of both individual condition and social disadvantage, using the relevant terms in discussion of individual rights as well as obligations of societal responsibility and service.

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HISTORICAL PERCEPTIONS OF PEOPLE WITH DISABILITIES To provide some context for our discussion of the Islamic view on disability, we present a brief review of the historical perceptions of individuals with disabilities across cultures and religions. Scholars who have researched this issue in depth have found that although the ways in which disability has been viewed have varied with time and place and have been deeply rooted in social, cultural, and economic context, common themes have persisted. The most common reaction, however, has been an unwavering perception of disability as difference, which has frequently led to negative feelings toward and discrimination against individuals with disabilities. Covey (1998) found that societies have commonly looked at people with disabilities in the following ways: as subhuman or animal-like, supernatural or gifted, ugly, evil, meriting pity or charity, entertaining, indigent, depressed, child-like, dependent, sexually hyperactive, damaged, less socially acceptable, and socially deviant. They have also been perceived to be scapegoats, burdens, and liabilities to their societies. Covey also found several common explanations for disability throughout history, including disability as a punishment from God for sin, a result of witchcraft and magic, a result of violence and accidents, the consequence of negative maternal feelings or parental misconduct during pregnancy, a hybridization of humans and evil spirits or animals, a normal side effect of a process of aging or decay, and a product of astrological influences. Covey writes that the common theme that emerged from his analysis was one of misunderstanding and stereotypes of disability. Scholars have also recognized certain common elements in perceptions of disability in Judeo-Christian and secular histories. In terms of religious history, individuals with disabilities were often restricted from participating in religious life due to several perceptions among the Judeo-Christian religious establishment. Rose (1997, p. 397) found four such perceptions, namely, “disability as sign of punishment or evil incarnation; disability as challenge to divine perfection; disability as object of pity and charity; and disability as incompetence and exemption from religious practice.” Particularly because of a belief in disability as a sort of impurity, an accompanying emphasis was on separating the “pure” (i.e., the spiritual and holy) from the “impure” and a view of disability as something to be cured rather than accepted. Therefore, those with disabilities were often excluded from religious participation and religious institutions, objectified as burdens on others, and restricted from partaking in everyday life activities (Covey, 1998; Rose, 1997; Selway & Ashman, 1998; Stiker, 1982/1999). A biblical passage, Leviticus 21:17–24, that was used in support of these propositions is the following: And the Lord spoke unto Moses saying: Speak unto Aaron saying: Whosoever be of thy seed throughout their generations that hath a blemish, let him not approach to offer the bread of his God . . . A blind man, or a lame or he who hath anything maimed or anything too long . . . crookbacked or dwarf . . . he shall not go to the veil nor go nigh unto the altar because he hath a blemish; that he profane not My Holy places. (cited in Rose, 1997, p. 395)

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The prejudices against disability that were grounded in the Judeo-Christian context served to inform another set of prejudices in the wider, secular society. Although the concepts of integration and compassion arose after the coming of the New Testament, an implicit assumption of marginality among individuals with disabilities continued to exist because the social norm of “able-bodied-ness” never faded (Stiker, 1982/1999). Barnes (1996, p. 57) argued that the “cultural oppression” of individuals with disabilities lies in the “myth of bodily and intellectual perfection of the ‘able-bodied’ ideal” that is rooted in Euro-American traditions. Similarly, the ethic of charity that gathered popularity in the 14th century objectified disabled individuals as the means to salvation for healthy, rich individuals, who again served as the norm (Stiker, 1982/1999). Even the 20th-century rhetoric of sameness and rehabilitation hampered thinking about differences when contemplating full integration because it, too, imposed a norm and treated disability as abnormal (Stiker, 1982/1999). Stiker asserted that no single Euro-American society has recognized disability as simply a natural difference in the human condition—a reality, not an abnormality. However, a view of disability as a fact of life has recently been championed by some modern, progressive Judeo-Christian and secular groups, particularly in the West, that provide accommodations and advocacy to advance the full participation of Individuals with Disabilities in society. The ADA Amendments Act of 2008, for example, which was pushed for by such groups, actively affirms and embodies this attitude.

ISLAMIC VIEWS ON HEALTH, ILLNESS, AND DISABILITY As noted earlier, positions on disability are almost always informed by beliefs about the origins of health and disease. As such, a discussion of the Islamic legal position on disability should begin by examining the Islamic understanding of health and disease. In Islam, the source of health, disease, and recovery is God. Disease is not caused by evil spirits or astrological forces, as was commonly believed in pre-Islamic Arabia and in other cultures throughout history (Rispler-Chaim, 2007). Nor is disease seen as a type of punishment from God. As a result, those afflicted with disease are not to be stigmatized, rejected as impure, or deemed evil. Instead, disease in Islam is viewed as a natural part of the health continuum. It is always described in Islamic law as a “matter of fact” (Rispler-Chaim, 2007, p. 93). Although health is definitely viewed in Islam as part of God’s benevolence, it is not guaranteed for any specific individual. Disease may befall an individual, and such an occurrence is viewed as a trial from God. Disease is also viewed as having a redeeming quality in that it may serve as a spiritual cleansing. As Rispler-Chaim (2007) noted, “Health and sickness become part of the continuum of being, and prayer remains the salvation in both health and sickness . . . [Yet] It is never proclaimed that the disease is predestined by [God] so that the ill Muslim has an opportunity to repent, or that the disease is a way of punishment for certain sins” (p. 7). Indeed, the Islamic tradition recognizes the power of spiritual cures (i.e., prayer, for physiological ailments as well as spiritual ones).

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The Islamic notion that illness—whether temporary or permanent—is not only natural but also spiritually redeeming (not debasing) finds support in numerous classical sources. In one hadi-th, for example, Muhammad stated, “No fatigue, no disease, nor sorrow, nor sadness, nor hurt, nor distress befalls a Muslim, even if it were a prick he receives from a thorn, but that Allah expiates some of his sins for that” (Hadith Al-Bukhari, 7:75:5641). In another hadi-th, the prophet recounted that God said, “If I deprive my slave of his two beloved things (i.e., his eyes) and he remains patient, I will let him enter Paradise in compensation for them” (Hadith Al-Bukhari, 7:75:5653). In the Qur’an, the sick person (mari-d) is excused from certain religious duties that are required of a healthy Muslim, and these verses are joined with a discussion of the same duties for the healthy counterparts (e.g., Qur’an 48:16–17). Some verses in the Qur’an expressly dispel the notion that disabled people are “impure” or “evil” and thus must be segregated (Qur’an 24:61 and 80:1–9). Similarly, the portions of fiqh that describe the duties of Muslims and relevant legal precepts also inevitably address these areas for those who are sick. Such juxtapositions reveal that sickness is as natural and normal an occurrence as health. This perception is emphasized in the numerous aha- di-th that show everyday interactions between Muhammad and individuals with illnesses and disabilities, including blindness, deafness, leprosy, epilepsy, lameness, and muteness (Miles, 2002). In examining the aha- di-th, the redeeming qualities of illness, as well as of supporting and visiting the ill, become clear. In one hadi-th, the prophet says that those who die from illness are martyrs (Hadith al-Bukhari, 4:52:82). In another, the prophet relates the following: Verily God will say on the Day of Judgment, “O children of Adam! I was sick and ye did not visit Me.” And the sons of Adam will say, “O our defender, how could we visit Thee? For Thou art the Lord of the Universe, and art free from sickness.” And God will say, “O men! such a one was sick and you did not visit him.” (as cited in Al-Mamun, 1999, p. 197)

From this discussion on the perceptions of health and illness in Islam, we can extrapolate one preliminary but powerful conclusion about Islam’s view of disability: it is a normal and morally neutral aspect of the human condition. This perception is quite unlike several of the common social and cultural perceptions of disability throughout history, as discussed earlier. Not only is disability not an abnormality among humans, it is also not a sign of evilness or impurity. Instead, like disease and health, disability is simply one element in a natural continuum of well-being for humans.

DISABILITY IN ISLAMIC LAW AND EARLY ISLAMIC SOCIETY Themes in the Qur’an We begin our examination of disability in Islamic law with a discussion of the general perspectives on disability that arise from themes within the Qur’an. We have identified five themes through an intimate examination of the text of the Qur’an and of its exegesis (tafsi-r) by Islamic scholars.

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The first of these themes is the concept of the normalcy of ill health and disability described in the last section. The four other themes are the normalcy of difference, accountability as contingent on ability, physical characteristics as morally irrelevant, and an emphasis on health promotion. In Islam, the normalcy of difference (the second theme) is one of the most basic precepts of human existence. This idea is laid out plainly in the following verse of the Qur’an: O mankind! We created you from a single (pair) of a male and a female, and made you into nations and tribes, that ye may know each other (not that ye may despise each other). Verily the most honoured of you in the sight of Allah is (he who is) the most righteous of you. And [God] has full knowledge and is well-acquainted (with all things) (49:13). (Ali, 1992, pp. 1342–1343)

This verse outlines the common origin of all human beings, the central humanity that unites all individuals as a result of this commonality, the normalcy of difference as a fact of existence, the purpose of difference as uniting people in mutual understanding, and the proper standard of human evaluation as spiritual (not physical or mental) excellence. As Bazna and Hatab (2005) note, this verse comes after a set of verses that emphasize respecting the dignity of others, which suggests that the “equality of biological origin should be reflected in the equality of the human dignity common to all” (p. 12). Another passage—one of several similar verses—that discusses the normalcy of difference is the following: Seest thou not that [God] sends down rain from the sky? With it We then bring out produce of various colours. And in the mountains are tracts white and red, of various shades of colour, and black intense in hue. And so amongst men and crawling creatures and cattle, are they are of various colours. Those who truly fear [God], among His Servants, who have knowledge; for [God] is Exalted in Might, Oft-Forgiving (Qur’an 35:27–28). (Ali, 1992, pp. 1109–1110)

Thus, not only is difference an essential quality of human existence, it is also similarly natural for the broader world of creation. The idea that difference in human conditions is a normal fact of life is further emphasized by the third Qur’anic theme, that accountability and responsibility are contingent on ability. One of the most famous verses of the Qur’an states, “On no soul doth [God] place a burden greater than it can bear” (2:286) (Ali, 1992, p. 120). In Islam, the magnitude of and accountability for one’s obligations and duties are measured by one’s ability. This standard applies in religious, legal, and civic contexts. For example, the amount of money that one gives in zaka- t is measured as a percentage of one’s saved wealth, which acknowledges the varying degrees of wealth that people have. The following partial verse illustrates this example: “Let the man of means spend according to his means: and the man whose resources are restricted, let him spend according to what [God] has given him. [God] puts no burden on any person beyond what He has given him” (Qur’an 65:7) (Ali, 1992, p. 1486). Similarly, if someone is unable to complete a required fast during the month of Ramadan, he or she may make up this obligation in an alternative

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manner (Qur’an 2:184). The fact that standards differ with ability supports the earlier conclusion that difference is seen as natural in Islam. The notion that variety and differences are a natural aspect of the human condition is consistent with the fourth Qur’anic theme that physical ability and characteristics are morally irrelevant. Put differently, there is a decisive emphasis on internal piety in Islam, especially in the context of human evaluation. Part of a Qur’anic verse previously quoted states, “Verily the most honoured of you in the sight of [God] is (he who is) the most righteous of you” (Qur’an 49:13) (Ali, 1992, p. 1343). A hadi-th of the prophet similarly relays, “God does not judge you according to your bodies and appearances, but He looks into your hearts and observes your deeds” (as cited in Bazna & Hatab, 2005, p. 12). Both of these citations illustrate that it is spiritual, not physical or mental, excellence that is the proper standard of judgment of human beings. Although illness and variability in physical appearance may be viewed as natural in Islam, a fifth theme from the Qur’an emphasizes health promotion. Part of the reason that those who are sick or otherwise unable to perform certain duties are excused from doing so is because such performance may worsen their health. Islam emphasizes the protection and maintenance of health, which involves also the prevention of ill health. For example, the Qur’anic dietary commands require an individual to consume food that is beneficial, not harmful, to the body (2:168). One conclusion that can be drawn from this theme is that to the extent that disabilities can be prevented, society and individuals must take measures to do so. Another major conclusion is that people should not grow weaker or more ill from obeying God’s commandments, since Islam is a religion of ease, not hardship, as the Qur’an states in 22:78.

Rights and Responsibilities of People with Disabilities The five Qur’anic themes underlie Islamic law in terms of rights and responsibilities of people with disabilities. For example, Muslims with disabilities are not to be punished for their conditions, and religious duties are tailored to their abilities. These concepts are apparent when discussing ritual pillars of Islam (such as prayer, fasting, and Hajj), criminal law, and employment. Ritual prayer (sala- t) is one of the major daily duties of a Muslim. These five daily prayers involve a set of prerequisite conditions as well as certain physical and mental actions. Thus, for some with disabilities, prayer may prove difficult or impossible, and therefore religious accommodations or exemptions are provided. For example, one of the prerequisites of prayer is cleanliness, or taha-rah. Before each prayer, Muslims must be in a state of purity, attained through wudu-’ (ablution). Wudu-’ involves a systematic cleaning with water of certain body parts, such as the hands, face, arms, and feet. Because sanity is a requirement for the completion of wudu-’ and other religious duties, those who are unconscious or with severe intellectual impairments (e.g., from mental retardation) are not responsible for these rituals. For those who may not be able to use water, using sand or dust in the symbolic manner known as tayammum is the recommended substitute. Islamic law also recognizes that wudu-’ may be modified for those individuals who have connected fingers, a superfluous hand or foot, or superfluous skin (Rispler-Chaim, 2007).

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The various ways in which wudu-’ can be voided also have implications for Muslims with disabilities. These ways include passing gas, urinating or defecating, certain types of bleeding and vomiting, sleeping, and losing consciousness. For individuals who have health reasons that make it difficult to maintain purity (e.g., suffering from urinary incontinence, intestinal conditions, or lack of control over certain organs), the general procedure is to take precautions to treat or allay the condition, contain or stop the flow of discharge if applicable and possible, or, if none of these is feasible, to continue with the prayer and ignore the discharge (Rispler-Chaim, 2007). These exceptions revisit the theme of responsibility contingent on ability, which was discussed in the previous section. The Muslim prayer itself involves a number of physical movements— including bowing, sitting, and prostrating—the requirement of which may be relaxed for people who cannot perform them. Prayer in the Qur’an is not equated with or confined to one physical position or the other. Rather, the Qur’an explicitly states that remembrance of God can occur while “standing, sitting, or while lying on [one’s] side” (3:191). Still, individuals who are able to stand while in prayer should, while those who are unable should do what they can, in the following hierarchy of preferences: leaning against a support, sitting, lying on one side, or using one’s head and eyes to mark the prayer—in all cases ensuring that the prostration is deeper than the bowing (Al-Marghinani, 2006; Rispler-Chaim, 2007). Similar principles apply to the duty of fasting. Obligatory fasts are imposed during the month of Ramadan. The Qur’an explicitly prescribes fasting and exempts certain people from the obligation, including those who are ill or traveling. The exemption for the sick also applies to individuals with disabilities who are unable to fast. If the inability lasts only part of the month of Ramadan, the person should make up the fasts afterward. Those who are never able to fast or whose health condition may worsen by fasting should not fast, and should instead either feed the poor for each missed day or donate charity of the same value (Al-Marghinani, 2006; Rispler-Chaim, 2007). Another pillar of Islam, the Hajj pilgrimage, offers exemptions for those individuals who are unable to meet the physical requirements of the journey. Hajj is required only for those who are able to undertake it, according to the Qur’an (3:96–97). Some individuals with disabilities may be able to complete the Hajj without much difficulty, such as those who are blind and have a guide. Others may not be able to and are thus exempt. Some schools of Islamic law claim a requirement on those with sufficient financial means to send someone to complete the Hajj in their stead. For those disabilities that arise during the course of Hajj, the affected person should excuse him- or herself from the Hajj and send an animal for sacrifice (Rispler-Chaim, 2007). The general idea that emerges from the Islamic legal perspective on Hajj, as Rispler-Chaim (2007) noted, is that disability per se or requiring assistance does not prevent one from executing the duty so long as the person is “conscious and aware of the import of the rituals and holiness of time and place” (p. 36). In addition to the pillars of Islam, there are numerous other areas in Islamic law in which individuals with disabilities have affirmative rights. For example, these individuals have a recognized right to public service and public spaces.

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Disability also does not bar anyone from the right to marriage, and only a select few disabilities that prevent major marital functions or are contagious or dangerous in some way may suffice as reasons to prevent or terminate a marriage (Rispler-Chaim, 2007). In the area of Islamic criminal law, offenders with disabilities may have certain rights on account of their disability. There are three requirements for the application of punishment: will, knowledge, and intent. That is, to be punishable by law, “the offender must have had the power to commit or not to commit the act (qudra); he must have known (‘ilm) that the act was an offence; and he must have acted with intent (qasd)” (Peters, 2005). As a result of this theory of mens rea (guilty mind), individuals who are insane or whose disabilities render them unaware of their deeds are not held liable. On the question of whether Islamic law affords individuals with disabilities legal protection against discrimination in the employment context—which is a predominant concern in European and North American disability law—we can look to the general Qur’anic themes of normalcy and equality, specific historical illustrations related to fairness in opportunity, and modern religious edicts on this issue. We have already seen that in terms of strictly religious opportunities, if an individual with a disability is able to perform a duty, he or she has the right and responsibility to do so regardless of the presence of disability. The same attitude of nondiscrimination in opportunity has a presence in nonreligious contexts as well throughout Islamic history. Numerous contemporaries and companions at the time of the prophet who had disabilities were appointed to leadership positions and political offices, fought in battles, led political and military campaigns, and were religious scholars. These examples are cited in modern rulings and studies in the Muslim world that assert the irrelevance of disability in determining whether an otherwise capable candidate can be employed in a given position (Rispler-Chaim, 2007). Al-Jahiz (1990), a famous medieval Muslim scholar, wrote that disabilities do not prevent qualified individuals from participating in religious society, being employed, and holding important offices.

Obligations on the Community Although Islam grants legal rights and opportunities to individuals with disabilities, it also imposes obligations on communities in relation to these individuals. Through an examination of Islamic law, we identified three themes that are implicated in this discussion: equity in treatment, social welfare, and disability as a human rights issue. The first theme, equity in treatment, deals with the subject of interpersonal ethics in Islam as they relate to individuals with disability. As described in the Qur’an and Sunnah, individuals with disabilities must not be dismissed or denigrated on account of their disabilities. A popular story in the Qur’an describes how the Prophet himself was reproached for turning away from a blind man who had interrupted him during an important meeting with the chiefs of Mecca. The message of this story (which is contained in chapter 80) is one advocating the ethical treatment of all individuals, the judgment of individuals based on internal (i.e., nonphysical) characteristics, and nondiscrimination on the basis of ability or strength.

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Indeed, the blind man in this story went on to be appointed as a governor and commander in various military expeditions, as noted by Al-Basit (as cited in Rispler-Chaim, 2007, p. 132). In addition to maintaining ethical interpersonal relations, the community also has a duty to maintain social welfare. Islam’s zaka- t system is the foremost economic welfare system in Islamic law and represents a legal duty among Muslims to care for the economically disadvantaged. The purpose of zaka- t is to ensure that the basic needs of every member of society are met in a sustainable fashion. Jurists agree that individuals with disabilities who are unable to earn a living are mandatory recipients of zaka- t funds, and Al-Basit specifically mentions that zaka- t funds should also be used to create professional training programs and employment opportunities for these persons (Al-Kawthari, 2005; Al-Basit as cited in Rispler-Chaim, 2007, p. 133). Throughout Islamic history, governments have borne the responsibility of dispersing these funds as well as provided public services, such as treatment and housing facilities for the disabled, through its charitable endowment (Al-Basit as cited in RisplerChaim, 2007, p. 133). Islamic law also mandates material care for individuals with disabilities beyond any economic needs. Al-Basit noted the existence of a fard kifa- ya— communal obligation—to care for individuals with disabilities, which means that those who can and do perform such care can fulfill this duty on behalf of the entire community (as cited in Rispler-Chaim, 2007, p. 132). This duty has historically been fulfilled in Muslim societies through the presence of hospitals, homes, and social service centers for individuals with disabilities as well as through the provision of financial aid, aides, guides, and interpreters by the state or other relevant agency. For example, a recent fatwa (legal edict) by the grand imam of Al-Azhar University in Cairo, Muhammad Sayyid Tantawi, required that an interpreter be present at all Friday sermons to sign the sermon’s content to the audience (as cited in Rispler-Chaim, 2007, p. 24). Thus, in both an economic and a material care sense, Islamic law holds the community as a whole responsible for ensuring the welfare of members with disabilities. The final theme implicated in this discussion is that of disability as a human rights issue. Islam makes clear that all humans share a common element— humanity—which entitles them be treated with equality and dignity, whether at an individual, interpersonal level, or at a larger, social welfare level (AlBasit, as cited in Rispler-Chaim, 2007, p. 125). This commitment provides the basis for the provisions already discussed.

Historical Applications of Islamic Law Against a legal backdrop affording rights to individuals with disabilities while obliging communities to contribute to the physical and financial wellbeing of segments of society in need, it would seem only fitting that the historical treatment of people in Islamic society who have disabilities would be generally marked with tolerance and humanity. A full review of this treatment is beyond the scope of this chapter, but a few general historical trends deserve mention.

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The first trend showcases the level of integration of disability into Muslim society. This trend reinforces the theme of normalcy that we already discussed extensively. Numerous authors and scholars, for example, have taken up the topic of disability in major legal and nonlegal works since the time of Muhammad. The first known writer on disability in medieval Islamic history was Al-Haytham bin Adiyy, who died in 821 (Ghaly, 2006). Other medieval writers on disability include Al-Jahiz (d. 868) who wrote explicitly on the normalcy and moral neutrality of disability, Khalil ibn Aybak al-Safadi (d. 1361) who wrote a biographical dictionary of blind luminaries, and Ali ibn Sultan Muhammad Qari al-Harawi (d. 1606) who wrote a short treatise on attitudes to blindness in the Qur’an and aha- di-th (Scalenghe, 2005). Through these writings there emerges a distinct corroboration of the concept that disability is a normal facet of life; is in no way a mark of evil, disgrace, or inferiority; and should not impede anyone from everyday participation in society. Scalenghe’s (2005) case study of deaf individuals in the Ottoman Empire (16th–18th centuries) illustrates the integration trend as well. Several notable scholars and political figures were deaf, including Ibn al Farfu- r (a jurist) and Riya- di al-Utrush al-Ru- mi (a judge). There is also evidence of the use of sign language in Ottoman courts (Miles, 2002). Scalenghe (2005) also noted the existence of numerous juristic rulings in Ottoman Syria enumerating the religious obligations of deaf and mute individuals and explicitly affirming the use of signs in contractual matters such as marriage and the permissibility of those with speech defects to lead prayer. Such legal rulings establishing the religious and civil rights of persons with disabilities reveal a second historical trend: a progressive outlook on the part of Muslim legal scholars and jurists. Building on the attitudes of the Qur’an and aha- dith that distinguished Islam from its neighboring civilizations, these legal rulings touched on topics such as marriage, contracts, and property rights, affording individuals with disabilities affirmative rights in each of these areas (Miles, 2002). They also pronounce a duty to care for in-need segments of society, which may include individuals with disabilities. This duty to care is a third historical trend in Islamic history, as was discussed in the previous subsection.

CONTEMPORARY OVERVIEW OF DISABILITY IN MUSLIM COUNTRIES Our discussion of Islam’s view of disability concludes with an overview of the contemporary conditions of individuals with disabilities living in Muslim countries. (We refer to countries with majority Muslim populations and Muslim leadership as Muslim countries; these countries are located primarily in Asia, the Middle East, and Africa.) Although we have seen a marked openmindedness, progressiveness, and humanity characterizing the Islamic legal conception of disability throughout history, the circumstances in the Muslim countries unfortunately generally do not uphold this religious standard. Indeed, many Muslims worldwide possess negative views of disability as a reflection of punishment or sinfulness. Although these views have no basis in

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Islam, as we have noted, they often guide the ill treatment of individuals with disabilities in certain societies. Still, as we will see, numerous steps on the part of religious and political leaders and well as civil organizations demonstrate a developing commitment to improving the conditions of individuals with disabilities in line with Islamic principles.

Today’s Challenges Most Muslim countries today would be considered by any economic analysis to be developing. Prevalent political turmoil and civil conflict coupled with an underdeveloped infrastructure means that in most contexts, the practical realities facing individuals with disabilities differs vastly from the traditional Islamic views. These traditional views dictate how Muslim communities must take responsibility for their disabled citizens and are reflected in many contemporary fatwas and laws, which hold Muslim countries accountable for ensuring that their citizens with disabilities have equal rights. Yet modern technology, disparities in wealth and knowledge, and complex sociopolitical systems have made it difficult to bridge the gap between what is understood as Islamically correct and what is realistically feasible for Muslim countries to implement. The socioeconomic situations of Muslim countries have significant implications for those with disabilities. The proportion of disability in the developing and Muslim countries caused by communicable, maternal, and perinatal diseases, for example, is higher than in developed nations (Elwan, 1999). Compounding these causes of disability, many Islamic nations have been faced with some form of conflict over the past several decades and these conflicts have created a population of disabled veterans and civilians injured during wartime or through postwar accidents. In many instances, the high burden of war-based disability has forced governments to create services for the disabled (Turmusani, 2003). Poverty has left many families with disabilities, such as visual or hearing impairment from otherwise preventable causes (Williams, 2001). It is estimated that there are 25 million deaf and hard-of-hearing Muslims around the world, with as many as 2 million in Egypt alone (Rispler-Chaim, 2007). Such a high occurrence of disease and disability, much of it preventable, makes it difficult for Muslim societies with limited resources and infrastructure to address disability needs and awareness in a meaningful way. Another roadblock to effective disability policy and practice in Muslim countries comes in the form of negative or apathetic social attitudes toward disability. Even in the face of contrary evidence in Islamic theology, some assumptions about disability in Muslim countries are that disability is “hereditary” or that “mothers are fundamentally culpable” (Crabtree, 2007, p. 53). This attitude toward disability is heavily steeped in culture but over time has mistakenly justified itself in religious terms, leading to a misinformed religious basis for the social stigma surrounding disability. It is possible that the lower levels of education and literacy in the Muslim world contribute to the lack of acceptance and understanding of disabilities and to a sense of hopelessness as to the unavailability of treatment and support systems for the

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disabled. Hasnain, Shaikh, and Shanawani (2008) described the variety of beliefs, stigmas, and stereotypes surrounding disability in Muslim countries, including a belief that curses or evil spirits cause disability; pity, hostility, and fear toward individuals with disabilities; a commitment to keeping children with disabilities at home; less acceptance of cognitive or mental disorders than of physical impairments; and a view of disability as a cause for shame. However, Hasnain et al. also noted the variety in Muslim attitudes toward disability, with some Muslims espousing a view of disability as punishment and others firmly rejecting this view in favor of a more scientific, optimistic, or objective view. In Pakistan’s North West Frontier Province (NWFP), a study of public perceptions found that people tended to feel that their individual attitudes toward disability were more advanced and compassionate than the attitudes of the general public. However, individuals with disabilities in the same region described public attitudes as less accepting of disability (Miles, 1983). It is plausible that the general public in this region is less aware of the impact of their attitudes toward the disabled person than could reasonably be expected of them; if this perception were true, it would be ample evidence of the lack of education and understanding surrounding disability in that part of the world. For disabled people in the NWFP, and most likely in other areas of Pakistan, the public perception of disabilities is an important social barrier to gaining respect, and thus access to services, in the community. In addition to challenges related to social perceptions, there are also substantial infrastructural challenges that hinder disability accommodation and outreach in Muslim countries. Much of the responsibility for care for the disabled in these countries rests on the shoulders of the family (Williams, 2001), which in the developing world is a financial burden that many families cannot accommodate. Beyond the care provided by the families, there is little government-instituted infrastructure to assist individuals and families in dealing with permanently disabled people, with the majority of services that do exist being offered to disabled military veterans only. Individuals with disabilities in these countries tend not to attend school or receive job training unless they are wealthy and can afford the expensive support systems available within their country or can import them from more developed countries. Wealthier families can afford to purchase Braille materials, wheelchairs, talking computers, personal support workers, and other special services (Williams, 2001). If there is care available to the nonwealthy disabled people outside of the home, it often comes in the form of nongovernmental organizations funded by more developed countries. The importance of these organizations cannot be understated as they often provide the sole point of care for many who would otherwise receive none. However, they too bring some challenges; often these organizations are faith-based, and the care they provide is grounded in Euro-American medicals models that fail to take into account the cultural context of disability in the region (Turmusani, 2003). There is no doubt a need for stronger national responses and more support for local grassroots efforts to address the needs of disabled people in an internally driven, culturally and religiously competent, and governmentsponsored fashion. Such efforts will help shift a prevalent, current belief that

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people with disabilities need to be sheltered because they cannot have a productive future. One study in Saudi Arabia found that depression among visually impaired boys was almost twice that of boys who were hard of hearing (Abolfotouh & Telmesani, 1993). This finding suggests that the psychosocial impact of blindness in countries with lower levels of infrastructure may be related to the resultant dependency on others. Thus, a major focus of current efforts should be to support autonomy, allowing people with disabilities to function for themselves in the ways they desire. Gender also plays a role in fostering disparate treatment among individuals with disabilities. A Palestinian study found that men who had been disabled via their involvement in the conflicts surrounding the events of the Intifada (uprising) were revered as heroes, and the public perception of their disabilities was improved. However, women with disabilities were seen as secondclass citizens, leaving many women in the dark when pursuing social support for their conditions (Turmusani, 2001). The existence of such gender disparities signals that the disparate treatment of individuals with disabilities can be compounded further by one’s social status. Another infrastructure problem facing Muslim countries is the pressing need for better statistical data on disabilities in the Islamic world. Without more complete and accurate data, the true extent of disabilities affecting the population cannot be ascertained, and policy makers will have a difficult time designing effective programs and laws concerning disability needs. In addition, by improving the collection of statistics on disability, service providers can identify strengths and weaknesses of current services to better design and focus future efforts. In the developing world, the need for better data is magnified by the fact that the disabilities are often downplayed by families and societal institutions due to the cultural stigma that surrounds them (Turmusani, 2003). This, in turn, muddles the understanding of disability in the country as a whole. The data that do exist in Muslim countries is mostly of poor quality, poor comparability to other data sets, and limited applicability to the population (Eide & Loeb, 2005). Moreover, the majority of researchers collecting data are academics who have little connection to policy makers or government, and there is limited collaboration among them to standardize data collection across regions or conditions. Finally, few data collection instruments take into account the cultural context of disability in developing and Muslim countries, making it difficult to utilize existing instruments in any effective and meaningful way. One exception to this general trend is the growing use in several Muslim countries of the common Ten Questions screening instrument, which detects disability and has a high cross-cultural success rate (Eide & Loeb, 2005).

Moving Forward Although many Muslim countries may be simply too poor, too apathetic, or too occupied with other problems to devote the necessary attention to policies regarding disability, some are showing definite signs of progress in developing services for people with disabilities. India, having experienced staggering economic growth and stability in the past two decades, has begun

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to turn efforts toward social policies and has opened rehabilitation centers throughout the country for those with physical disabilities (Williams, 2001). Other more developed countries, such as Turkey, have also been augmenting the level of infrastructure available to people with disabilities. Though the opportunities are still fairly limited, the quantity and quality of schools, services, support, and parental education for families with children with disabilities has grown significantly (Akkök, 1994). Countries including Saudi Arabia, Qatar, and Egypt have been in the process of developing a systematic social institution to assist individuals with disabilities (Hasnain et al., 2008). Some countries have also shown tremendous legal progressivism for several decades, with jurists, scholars, and policy makers writing fatwas, articles, and policies, respectively, related to social awareness and provisions for individuals with disabilities. In terms of fatwas, there have been numerous and specific declarations of the rights of individuals to various resources. For example, scholars have declared that mosques ought to be equipped with interpreters to assist hearing-impaired individuals in understanding the Friday sermon. In Egypt, after a disability advocacy group made the suggestion, a fatwa was issued allowing the use of sign language interpreters in mosques, under the reasoning that no Muslim who seeks knowledge should be left uninformed or uneducated. On June 30, 2000, the first sermon using a sign language interpreter was given, and those in attendance reported exuberant sensations at finally being able to understand what was being said (Rispler-Chaim, 2007). A similar fatwa was passed in Turkey in 2003, on which sign language interpreters were introduced into mosques there as well (Albayrak, 2003). Another fatwa, this time issued by the Shariat Council of the United Kingdom, passed a ruling in 2002 allowing seeing-eye dogs in Muslim businesses and for use by visually impaired Muslims, reasoning that although dogs are not permitted in the home for cleanliness reasons, they are allowed if they contribute to a person’s safety, as in the case of seeing-eye dogs (Disability Rights Commission, 2002). Although Muslims often prefer not to keep dogs in the house, either as pets or as work animals, the proliferation and increasing effectiveness of seeing-eye dogs during the latter part of the 20th century brought about this legal ruling. Jurists have also commented on social attitudes in regard to disability. A 1997 fatwa by a Saudi Arabian jurist responded to a question pertaining to parents who tended to hide their disabled child from people and avoided taking the child to social gatherings. The jurist declared that such behavior was a mistake and that parents should bring their child out in public, unless this act imposed undue hardship (as cited in Rispler-Chaim, 2007, p. 98). Contemporary scholarly works on the Islamic view of disability as well as on the obligations of Muslim societies toward their disabled citizens have also been on the rise in the past few decades. Al-Basit’s study, discussed earlier, was published out of Israel in 2000 and discusses the rights of disabled individuals as well as the society’s obligations to these individuals, touching on topics such as preventive medicine, social attitudes toward disability, physical accommodation, and economic assistance (as cited in Rispler-Chaim, 2007, pp. 123–134). Numerous other scholarly works are referenced in this chapter.

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Policy makers in various Muslim countries have taken Islam’s affirmative rights for individuals with disabilities and converted them into forms of accommodation. In the area of religious rights, modern accommodations for disabled people such as ramps, curb cuts, designated parking, and architectural considerations have been included in mosques in Mecca, important mosques around the world, and at newer mosques. Modern medical advancements have changed the conditions of what a person with a disability is capable of achieving, and the advent of artificial limbs has added to Muslims’ ability to complete Hajj. A fatwa was passed determining that Hajj with an artificial limb is indeed valid, and while previously an individual who lacked limbs would not have been required to complete Hajj, someone with an artificial limb is obligated to do so. Another fatwa passed regarding disabilities and Hajj pertains to the use of hernia belts. During Hajj, one is to wear only white sheets, and no seams are allowed on one’s clothing. The issue of hernia belts arose because these belts fall outside the permissible garments. However, because a hernia belt assists someone striving to complete the Hajj and is worn strictly for medical purposes, it was deemed allowable to wear them, including ones with seams (Rispler-Chaim, 2007). Another Muslim duty—zaka- t—has also been used as a policy to assist those with disabilities. This annual financial contribution from each Muslim offers funds for social services. In Pakistan, the alms are distributed according to the needs of the receiving population, and some of the collected amount is put toward the development of education for those who would otherwise have little or no access. Zaka- t collected for impoverished students was traditionally limited toward food, soap, clothing, and textbooks. However, in 1980, Zaka- t funds were used to hire a special education teacher at a school for disabled children (Miles, 1995). Finally, Muslim decision makers have also exerted effort to assist those with disabilities. In an effort to increase the widescale applicability of Islamic philosophies in a modern context, the Universal Islamic Declaration of Human Rights (UIDHR) was drafted in 1980, resembling in many ways the Universal Declaration of Human Rights created by the United Nations (Rispler-Chaim, 2007). The UIDHR includes provisions applicable to people with disabilities and was seen as a watershed moment for those advocating for human rights in the Islamic world. Like various domestic policies mentioned, the UIDHR is a facial and practical articulation of support for individuals with disabilities.

CONCLUSION Through a review of Islam’s primary and legal sources—the Qur’an, aha- di-th, and fiqh—this chapter has provided insight on a fairly esoteric subject: the Islamic view of disability. Against a global historical backdrop that has often featured negative views of disability and alienation of individuals with disability, the Islamic philosophy of disability is humane, equitable, broadminded, and progressive (Rispler-Chaim, 2007). Themes in Islam emphasize

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the normalcy and moral irrelevance of difference and disability, as well as the affirmative rights given to those with disabilities. There are community obligations to assist persons with disabilities. However, in Muslim countries today there is much work to be done in the area of disability needs and awareness, despite significant progress that has been made in recent decades.

NOTES 1. References to the Qur’an are in the format of chapter:verse. 2. References to hadi-th are in the format of volume:book:number.

REFERENCES Abolfotouh, M. A., & Telmesani, A. (1993). A study of some psycho-social characteristics of blind and deaf male students in Abha City, Asir Region, Saudi Arabia. Public Health, 107, 261–269. Akkök, F. (1994). An overview of parent training and counseling with the parents of children with mental disabilities and autism in Turkey. International Journal for the Advancement of Counseling, 17, 129–138. Albayrak, M. (2003). Hearing-impaired listen to Friday sermon in sign language. Retrieved February 12, 2008, from www.deaftoday.com/news/2003/05/ hearingimpaired_8.html. Al-Faruqi, I. R., & Al-Faruqi, L. L. (1986). The cultural atlas of Islam. New York: Macmillan. Ali, A. Y. (1992). The meaning of the holy Qur’an. Beltsville, MD: Amana. Al-Jahiz, A. (1990). Al-Bursan wal urjan wa umyan wa hulan. Beirut: Dar ul Jeel. Al-Kawthari, M. A. (2005). Fiqh of financially supporting one’s parents and other relatives. Retrieved February 5, 2008, from qa.sunnipath.com/issue_view. asp?HD=12&ID=3458&CATE=212. Al-Mamun, A. (1999). Al-Suhrawardy. Secaucus, NJ: Citadel Press. Al-Marghinani, B. (2006). Al-Hidayah: The guidance. I. A. Nyaze (Trans.). Bristol: Amal Press. Barnes, C. (1996). Theories of disability and the origins of the oppression of disabled people in Western society. In L. Barton (Ed.), Disability and society: Emerging issues and insights (pp. 56–57). New York: Pearson Education. Bazna, M., & Hatab, T. (2005). Disability in the Qur’an: The Islamic alternative to defining, viewing and relating to disability. Journal of Religion, Disability and Health, 9(1), 5–27. Covey, H. C. (1998). Social perceptions of people with disabilities in history. Springfield, IL: Thomas. Crabtree, S. A. (2007). Family responses to the social inclusion of children with developmental disabilities in the United Arab Emirates. Disability & Society, 22(1), 49–62. Disability Rights Commission. (2002). No ban on guide dogs under Islamic law. Stratford-upon-Avon: Author. Eide, A. H., & Loeb, M. E. (2005). Data and stats on disability in developing countries. Disability Knowledge and Research, July. Elwan, A. (1999). Poverty and disability: A survey of the literature. Social protection discussion paper series no. 9932. Washington, DC: World Bank. Ghaly, M. I. (2006). Writings on disability in Islam: The 16th century polemic on Ibn Fahd’s al-Nukat al-Ziraf. Arab Studies Journal, 13(2)–14(1), 9–38.

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Hadith al-Bukhari (n.d.). Translation of Sahih Bukhari. M. M. Khan (Trans.). Retrieved February 19, 2008, from www.usc.edu/dept/MSA/fundamentals/ hadithsunnah/bukhari. Hallaq, W. (2005). The origins and evolution of Islamic law. New York: Cambridge University Press. Hasnain, R., Shaikh, L. C., & Shanawani, H. (2008). Disability and the Muslim perspective: An introduction for rehabilitation and health care providers. Retrieved June 6, 2008, from cirrie.buffalo.edu/monographs/muslim.pdf. Miles, M. (1983). Attitudes towards persons with disabilities following IYDP (1981): With suggestions for promoting positive change. Peshawar, Pakistan: National Council of Social Welfare. Miles, M. (1995). Disability in an Eastern religious context: Historical perspectives. Disability & Society, 10(1), 49–69. Miles, M. (2002). Some historical texts on disability in the classical Muslim world. Journal of Disability & Health, 6(2/3), 77–88. Peters, R. (2005). Crime and punishment in Islamic law: Theory and practice from the sixteenth to the twenty-first century. New York: Cambridge University Press. Rauf, F. A. (2003). What’s right with Islam. New York: Harper San Francisco. Rispler-Chaim, V. (2007). Disability in Islamic law. Dordrecht: Springer. Rose, A. (1997). Who causes the blind to see?: Disability and quality of religious life. Disability & Society, 12(3), 395–405. Rothstein, L., & Rothstein, J. (2006). Disabilities and the law (3rd ed.). St. Paul, MN: Thomson/ West. Scalenghe, S. (2005). The deaf in Ottoman Syria, 16th-18th Centuries. Arab Studies Journal, 12(2)–13(1), 10–25. Selway, D., & Ashman, A. F. (1998). Disability, religion and health: A literature review in search of spiritual dimensions of disability. Disability & Society, 13(3), 429–439. Stiker, H. J. (1982/2000). A history of disability. W. Sayers (Trans.). Ann Arbor: University of Michigan Press. Turmusani, M. (2001). Disabled women in Islam: Middle Eastern perspective. Journal of Religion, Disability & Health, 5(2/3), 73–85. Turmusani, M. (2003). Disabled people and economic needs in the developing world: A political perspective from Jordan. Aldershot: Ashgate. Williams, J. M. (2001). Muslims say disabled people need better treatment in their countries. Retrieved February 9, 2008, from nod.org/index.cfm?fuseaction=page. viewPage&PageID=468&C:\CFusionMX7\verity\Data\dummy.txt.

CHAPTER 14

Living with a Learning Disability and Other Marginalized Statuses: A Multilevel Analysis Katherine E. McDonald, Christopher B. Keys, and Fabricio E. Balcazar

Disability is still a stigma that society really doesn’t want to deal with. (Samuel) Just because I have a disability doesn’t mean I’m not a human . . . I bleed the same way you do . . . I’m just the same as anybody else. (Tamika) We’re nobody to them. (Charletta) “[They think] that a person with a disability has to be blind or wheelchair bound . . . Some teachers say there’s no such thing as a learning disability. (Tamika) I can pass more as being normal ’cause I have that hidden disability. (Samuel) I think that the way [my father] puts me down . . . has created something in me to become something, to prove that theory wrong. (Bernadette) [One of the reasons] that I went to college is so that . . . society would see me as . . . able to carry my own weight. I want to be as normal as I can . . . that makes me feel like I’m more acceptable. (Samuel)

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hese are statements made by African American and Latino young men and women with learning disabilities from low-income households about their disability. In a recent study, we explored how ethnic minority young adults with learning disabilities from low-income backgrounds perceive dominant cultural narratives of their disability, create personal narratives about their disability, and make choices about how to address their disability. In this chapter, we provide relevant background information and our analysis of participants’ perspective on dominant cultural narratives of disability (e.g., that learning disability conveys illegitimacy, low intelligence, and worthlessness), their personal narratives of disability (e.g., understand learning challenges, restrain from goal attainment, source of shame, embarrassment, and anger and threat to positive self-identity), and their response to addressing their

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disability (e.g., passing as nondisabled, taking a rights perspective, removing self from oppressive settings, reframing cultural narratives and becoming somebody). We then consider the implications of these findings. Our work was guided by a socioecological model of disability that views the experience of disability as emergent from interactions of individuals with impairments within their social and physical environments (Brandt & Pope, 1997; Nagi, 1991; Pledger, 2003; Rioux, 1997). Socioecological theories also allow us to examine human behavior as embedded in social context, directing attention to the interdependence and adaptation of individuals and settings (Trickett, Kelly, & Vincent, 1985). Socioecological theories stipulate the need to consider individuals’ perceptions of their social environments to best understand their experience and behavior (Moos, 1996). Our work was also informed by a sociopolitical analysis that considers individuals with disabilities as a minority group that faces marginalization in many international contexts (Charlton, 1998; White, 2005). Scholars aligned with disability studies (an interdisciplinary field focused on analyzing the meanings of cognitive, corporal, and sensory difference; Snyder, 2006) have identified dominant cultural narratives that inform some conceptualizations of disability and the treatment of individuals with disabilities (Charlton, 1998; Linton, 1998). Dominant cultural narratives are stories communicated to individuals through socialization channels such as schools and mass media that frequently convey pejorative stereotypes about sociopolitical minority groups (Rappaport, 2000). Cultural narratives of disability include assumptions that people with disabilities are pathological and incompetent, beliefs that have been used to exclude people living with a disability from community life (Charlton, 1998; Linton, 1998). It is important to note that these cultural scripts were informed predominantly by White males with visible physical disabilities (Fine & Asch, 1988; Hernandez, 2005; Linton, 1998; Ostrander, 2008). It is possible, and indeed probable, that other forms of disability and considerations of additional elements of human diversity (e.g., ethnicity, gender, and socioeconomic class) may modify these cultural narratives. Scholars working at the nexus of sociocultural diversity and disability note ethnic minorities with disabilities may be isolated from both their racial/ethnic as well as people with disabilities (Stuart, 1992; Vernon, 1999). These individuals may find it more difficult to overcome negative stereotypes for either of their minority statuses, and while experiencing multiple oppressions may not be most focused on their disability (Block, Balcazar, & Keys, 2001; Hernandez, 2005) and/or receive needed social support. Considering both disability and gender, men with disabilities may be perceived as incomplete men for their failure to live up to the assumption of masculinity as capable and strong. Women with disabilities may receive more conflicting social narratives as they are often perceived as weak and dependent (Morris, 1993). However, cultural expectations for women with disabilities often exclude sexuality, work of any nature, and motherhood (Fine & Asch, 1988; Morris, 1993); a notable exception is the collection in Banks and Kaschak (2003). Last, experiencing poverty may contribute to fewer social and economic resources through which to constructively address

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any disability-related impairment and/or institutionalized discrimination (Block et al., 2001; Charlton, 1998; Vernon, 1999). Importantly, individuals with learning disabilities experience a less apparent form of disability. While individuals with learning disabilities encounter skepticism concerning the authenticity of their disability, assumptions of incompetence, and exclusion from social and community life (Beilke & Yssel, 1999; Kruse, Elacqua & Rapaport, 1998), the less visible nature of their disability might allow them to avoid being identified as people with disabilities. That is, individuals with learning disabilities can potentially pass as nondisabled and choose to avoid open affiliations with others with disabilities. This characteristic of learning disabilities can alter the nature and/or relevance of previously identified cultural narratives of disability for people living with learning disabilities. However, little empirical work has been undertaken to identify dominant cultural narratives about people with learning disabilities, especially among ethnic minorities. In considering personal disability narratives, many individuals have been led to feel ashamed of having a disability (Charlton, 1998; Linton, 1998). These feelings threaten some individuals’ ability to have a positive selfidentity. These personal narratives, as they coexist in the context of pejorative cultural narratives, inform the way that individuals make psychological and behavioral choices about how to address their disability. For example, some individuals accept their social position as a natural outcome of their relative lack of worth and hence consider their status to be largely unchangeable (Nelson & Prilleltensky, 2005; Ryan, 1971). Or, to evade stigma, they attempt to pass as nondisabled (Lyon et al., 2001). Importantly, the critical analysis of dominant cultural narratives and their replacement with empowering personal stories has helped many oppressed individuals and groups make sense of their experience and work to transform social inequalities (Kloos, 2005; Nelson & Prilleltensky, 2005; Rappaport, 2000). To illustrate, some individuals forcefully employ strategies that help them resist incorporating negative messages into their self-concepts (Block et al., 2001). These acts of resistance to internalized oppression represent a psychological process toward self-liberation as individuals develop a critical view of their oppression and seek to challenge injustice and transform their social reality (Freire, 1970; Keys, 1993; Nelson & Prilleltensky, 2005; Prilleltensky & Nelson, 2002). Of note, individual choices about ways to perceive and respond to one’s disability are affected by a host of other contextual factors, including the extent of the disability and its degree of visibility; age; interactions with family, friends, colleagues, and professionals; knowledge of disability rights; ethnicity; gender; and socioeconomic status. To expand our understanding of how African American and Latino/a minority young adults with learning disabilities from low-income households perceive dominant (learning) disability-related cultural narratives, create individual narratives about their disability, and make choices about how to address their disability, we conducted a small, explorative study using group and individual interviews. To address this research goal, we recruited 13 ethnic minority young adults with learning disabilities from low-income households at two

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community colleges in a U.S. Midwestern city. We also conducted individual interviews with four faculty members from the participants’ community college. Student participants self-identified as and provided evidence of having a range of specific types of learning disabilities, including dyslexia, reading, math, attention deficit disorder (ADD), and nonspecific learning disability. Three participants also reported a second disability: depression, bipolar disorder, and panic and anxiety disorder. Participants had a mean age of 23.6 years (range 19–32 years). Six participants were male; four were African American and two were Latino. The remaining seven participants were female; two were African American and five Latina. Eight participants reported at least one indicator of a low or limited family income level (e.g., received free or reduced lunches in high school, and/or currently receiving food stamps, housing assistance, medical insurance, or cash subsidies), and five had at least one person in their family with some college experience. Our analytic process was informed by multiple qualitative methodologies, including phenomenology (Holstein & Gubrium, 1998; Tesch, 1990) and grounded theory (Strauss, 1987; Strauss & Corbin, 1990, 1998). Details about our research strategy can be found in McDonald, Keys, and Balcazar (2007).

MAJOR FINDINGS Participants identified dominant cultural narratives of learning disability (e.g., illegitimacy, low intelligence, and worthlessness), personal narratives of learning disability (e.g., the value of a label that informs learning challenges; the shame, embarrassment, and anger associated with learning difficulties and the experience of stigma), and their responses to living with a learning disability (e.g., choosing to pass as nondisabled, reframing pejorative dominate narratives, and a personal quest to become somebody). See Figure 14.1 for an overview.

Figure 14.1. Cultural and Personal Narratives of Learning Disability and Psychological and Behavior Responses.


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Dominant Cultural Narratives of Learning Disability Participants identified three pejorative messages about learning disabilities embedded in cultural narratives. These themes convey negative stereotypes about disabilities in general and learning disabilities in particular that are grounded in misperceptions of each. First, participants noted societal messages that conveyed the possible illegitimacy of learning disabilities (all names are pseudonyms): Some people around here think that disability comes with a wheelchair and a stick, and it doesn’t. (Tamika). They don’t understand this as a learning disability, they think it’s something, like playing a game and it’s not. This is something for real here. (Charletta) Because [my learning disability is] hidden, it’s not physical, some people think, “Well, he’s just trying to get by. It’s a game” . . . that [I’m] faking. (Samuel)

Participants noted that public perceptions of disability include easily apparent physical markings of a disability but are not yet inclusive of the array of disabilities. The relatively invisible nature of learning disabilities in tandem with a lack of understanding of their nature likely helped create narratives that question whether learning disabilities exist or whether the label is employed as an excuse to avoid working hard or for poor performance. A few participants evoked “game-playing” metaphors, suggesting societal-level concern that individuals with learning disabilities may be attempting to manipulate the system and convey distrust toward these individuals. Almost all participants reported the cultural message that learning disability is synonymous with intellectual inferiority, despite the fact that the diagnosis of a learning disability is only applicable to individuals with normal or above normal intellectual abilities. Having a learning disability . . . sometimes people would assume me not even being able to read or something. (Bernadette) [People assume] that I’m a bit slow. (Aston) They were calling me stupid. (Alexandro) Some of the other teachers that I had in high school, they was telling me to maybe go to trade school, work with my hands. (Samuel)

Last, our participants identified cultural narratives that suggest that individuals with disabilities are not fully human and regarded as less worthy of attention, respect and inclusion in community life. They frown up, you know, they don’t want anything to do with me after that. They ignore me, they blow me off . . . some staff . . . [and] some students . . . look at us . . . as freaks . . . sometimes they ignore me. (Tamika) [People] won’t pay that much attention to me. (Aston) We’re nobody to them . . . teachers don’t talk to you with respect. (Charletta) They look at you differently. (Anthony) They exclude you from other kids. (Bernadette) They’re trying to say that we shouldn’t even be here. (Samuel)

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These statements convey cultural narratives that suggest ways that having a disability denotes key differences between people and renders an individual with a disability less human than those without disabilities. The differences ascribed to those with disabilities are negative and serve as a basis for decreased regard, disrespect, and exclusion. Some participants noted that others overlook that there is a person living with the label of disability; rather, they reify the disability so that it overshadows the individual and the humanity we all have in common. Faculty members who participated in an interview agreed that a history of stigma and exclusion surrounded participants.

Personal Narratives of Learning Disabilities In the context of these negative societal narratives of disability, participants reported multifaceted perceptions of and emotional reactions to having a learning disability. First, participants reported the advantages and disadvantages of having the diagnosis and label of a learning disability. For example, being labeled with a learning disability provided an explanation for why they were having difficulty with classes and a means through which to address those difficulties, including access to disability services and supports. “I’m glad to have a label because I’m identified in a category,” Samuel said. However, many participants felt that their learning disability also made it difficult, and sometimes impossible, to achieve their goals and to succeed. Alexandro reported that he is “always thinking, well, I have a learning disability, will I be able to make it?” Maria felt her learning disability led to her enrollment at what she considered a less prestigious college: “I think if I didn’t have a learning disability, I think I could have been somewhere higher . . . I actually never applied to schools because I didn’t know if I was going to get accepted or not. So . . . I just came [to a community college].” Participants shared most strongly and consistently the ways in which having a learning disability has affected them emotionally, including feeling shame, embarrassment, and anger as a result of experiencing the stigma of disability. Feeling shame and embarrassment were typically rooted in childhood experiences when participants first experienced learning difficulties and were diagnosed. “I went through high school being made fun of,” Tamika shared. Participants encountered the stigma of their label from psychologists and teachers, peers, and family members. As a result of feeling ashamed, embarrassed, and unable to achieve certain goals, participants reported struggling to maintain a positive self-image, including feeling competent and capable of accomplishing life goals. “I am not really confident in myself. I am scared of doing things” (Alexandro). For a few participants, these experiences led them to experience anger related to challenges in learning as well as the stigma they experienced. Consequences of this anger included getting into physical altercations with peers. As Alexandro shared: “The only way I could defend myself was fighting, not letting myself get picked on. I didn’t want to fight but sometimes [my schoolmates] pushed me to a limit, it would just get me mad.” Some became so frustrated that they shut down and stopped trying: “When I get frustrated, I get mad and I stop everything” (Tamika).


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Psychological and Behavioral Responses to Living with a Learning Disability These cultural and personal narratives linked to learning disability informed how participants develop psychological and behavioral responses to their disability. These responses can be divided into those that attempt to minimize the effects or sidestep the associated stigma of the disability, and those that reflect more proactive steps to self-liberate and resist internalizing pejorative messages about their character. These later acts influence cultural and personal narratives. It is important to note that these responses occur not only in the context of cultural and personal narratives about disability but also in the dynamic context of a less visible form of disability and individual’s age, presence of social support, encouragement and/or discouragement from parents and teachers, positive and negative interactions, knowledge of their disability and disability rights, and other elements of their sociocultural diversity (e.g., gender, race/ethnicity, socioeconomic status). Some participants downplayed or minimized the effects of having a learning disability. They worked to convince themselves and others that their disability did not significantly affect them. Participants reported varying degrees of awareness of having this reaction to their learning disability. On one end were those who brushed off the notion that their disability was salient, “I don’t really care about my disability . . . it hasn’t really affected me,” said Aston. Other participants were more aggressively proactive in this minimizing process, “I’m not going to let [my disability] affect [my college work] at all” (Anthony). Some participants adopted this stance because they did not want to be treated differently: I try not to [think about it] ’cause I don’t want that to affect the way I’m studying and stuff like that. I try to be the same way as the other students. (Mario). I didn’t want [my professor] to think I was dumb or nothing like that. (Francisco)

The invisibility of a learning disability enables attempts to pass as nondisabled, “If they just see me, they don’t know” (Aston). Some tried to avoid stigma in doing so: “I can pass more as being normal ’cause I have that hidden disability” (Samuel). This minimizing response was more common among younger participants. Faculty members noted in the interviews that individuals who choose not to disclose their disability likely do so not only to evade increased stigma but also out of a desire to get by independently, a concern to not appear as though they are making excuses, and/or because they do not know what to say. One faculty participant described these individuals as “quiet, fearful.” A few faculty participants noted this strategy may be particularly strong among Latinos. This faculty felt that more Latinos may be raised to believe they should defer to professionals. This belief is predicated on the assumption that professionals know better, particularly if the parents have little formal education and as a reflection of class differences (Freire, 1970). A small group of participants had gained a rights perspective toward their disability. To these participants, having a disability meant that they were entitled

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to fair and appropriate opportunities inclusive of accommodations and disabilityrelated services. Interestingly, in a resource-limited context (little available peer support, being a first-generation college student), having a disability meant that participants actually had increased access to resources. “I have access to a lot of things that other students around here don’t,” Tamika pointed out. In general, participants who assumed a rights-based perspective were older. “I used to be ashamed to tell people. Now, I’m more open” (Tamika). Almost all participants had developed proactive strategies to offset the negative effects of belonging to multiply marginalized groups. The use of these strategies reflects individual strengths, and perhaps a potential for thriving in the presence of oppressive cultural narratives. These strategies were demonstrated through four distinct processes, three of which are linked by a shared response of reformulating the pejorative cultural narrative. One form of individual resistance used by participants was that of physically removing themselves from situations in which they were not being treated respectfully. In these denigrating situations, participants recognized that they neither deserved this type of treatment nor had to remain in its presence, and so did not. Bryant, Anthony, and Samuel, respectively, described their responses to different situations: “I walked away,” “I pick and choose carefully the people that I associate myself with,” “That’s why I left. I dropped the class.” These participants demonstrated their ability to persevere in the presence of pejorative narratives by working to lessen their direct exposure to it. Other ways participants remained positive were to reconceptualize the validity or effect of the stereotype and replace the cultural narratives with opposing personal narratives. Participants reported three ways of reframing cultural narratives. First, many participants resisted internalizing oppressive narratives by discounting the validity of external evaluations of their abilities. Nobody else can tell you, only you can tell yourself what you are going to accomplish. (Anthony) Only you are the architect of your life. Only you can shape it. Only you can say what you can or cannot do . . . messages around you can lie to you. (Maria)

Participants also shared that they resisted internalized oppression by reversing the intended effect of negative external messages. Instead of receiving these messages and allowing them to reduce their own belief in themselves, some participants instead used the pejorative narratives as sources of motivation. For these participants, negative messages gave them extra desire to prove to the people who sent those messages, as well as to themselves, their fallacy. Alexandro shared the kinds of assumptions people had made about him because he was a person with a learning disability and the effect these had on him. He stated: “[Going to college], it’s just something that, as an LD student, when I was in grammar school . . . that many people, teachers mostly, told me that I won’t get that far. And now I just set my goal to it.” He refused to permit success-thwarting statements to influence him negatively; instead, he motivated himself to demonstrate their inaccuracy. Bernadette used this strategy in response to negative narratives about having a learning disability and also being a Latina. As she stated,


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I think that the way [my father] puts me down in order to not go to school makes me want to go to school. But I think that has created something in me to become something, to prove that theory wrong. To prove, not really that I have to prove that to my dad, but [to] a point I did. But I didn’t get nowhere thinking that way so I felt the one I had to prove is myself.

A final way that participants resisted internalizing oppressive cultural narratives was to replace external negative narrative with positive personal messages. These participants told themselves that they were indeed capable of succeeding, regardless of what those around them were articulating about their abilities. Everyday when I wake up, I just say to myself, you can do it. And you will do it. And when I say something, when I speak it, it always comes into existence. (Charletta) [I just try] to think positive. (Alexandro) My mom always told me if you think you have a problem then you are going to have a problem. (Aston)

For these participants and others, it was critical to believe in their own potential for success. For participants who did not receive many or any positive messages about their potential from societal scripts, this strategy nonetheless allowed them to articulate optimistic messages. Last, participants shared that they were pursuing college degrees to make something positive of their lives. Pursuing a college degree worked to transform cultural and personal narratives and was motivated by three goals. First, participants reported a shared personal vision in which a college degree could provide them with the opportunities necessary to advance so that they could better provide for themselves. As Bryant stated, “I want to make a better life for myself. School was the best way for a better future.” Participants believed obtaining a college degree would allow them to obtain the skills, competencies, and degrees necessary to be promoted within their current place of employment and/or to secure a better form of employment than that which they currently have. I didn’t like the kind of job I did . . . I thought I was a little smarter than that . . . I didn’t feel I’d be going anywhere . . . as far as moving up, advancement in the company . . . I wanted to do something different. I know what I want to do now, now I need to get the tools to help me do it. I didn’t have the tools, I was kind of like a diamond in the rough . . . I came back to school to get polished. (Anthony) It would give me a boost in what I am doing now . . . I could do the [skills learned in degree program] and get paid a little bit more than I do now.

Participants also felt that the likelihood of earning a livable income and promoting their social status were increased, likely leading to better jobs than their parents had. “I don’t want to work like how my parents worked” (Alexandro). Many participants were also pursuing a community college degree for family-related reasons. For example, a few participants felt that earning a college degree would permit them to provide more for their family. “I gotta

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make myself better to support [my son]” (Anthony). Other participants valued setting an important example for their siblings and children: I want to be a role model for [my children]. I want them to know that they need to get an education . . . that they don’t quit. (Tiffany) If I can do this, you can do this . . . I prefer to lead by example. (Anthony)

Participants noted that setting such an example was critical as too few people in their families and communities served as educational role models. A few students remarked that attending college meant further advancing the familial success that their own parents had begun. This focus on familial advancement was particularly strong among immigrant Hispanic families, where participants’ parents had come to the United States to provide a better life for their families. “[My parents] built the [foundation] of the house . . . and the next generation [me and my siblings] will build the rest of the house” (Alexandro). A few participants reported their desire to pursue a college degree was related to making statements and contributions to society. By attending college, they felt they demonstrated people with learning disabilities, regardless of gender, class, and ethnicity, were college material and could succeed. Students also felt that being in college brought them closer to being accepted by others as they achieved similar successes in their lives as people without disabilities. “[One of the reasons] that I went to college is so that . . . society would see me as . . . able to carry my own weight. I want to be as normal as I can . . . that makes me feel like I’m more acceptable” (Samuel). More males than females reported pursuing college to increase their value to society. Faculty members noted how impressed they were by these individuals who, in the face of many obstacles and responsibilities, were able to pursue a college degree. To illustrate, faculty talked about how many of these individuals were responsible for family members, working while attending college, and doing so in a setting without adequate levels of student support services. Moreover, as first-generation college students, faculty spoke of participants’ families who did not have the knowledge and experience to help them succeed in college and know about their rights as individuals with disabilities.

IMPLICATIONS We interviewed African American and Latino/a young adults with learning disabilities from low-income backgrounds to explore their perspectives of dominant cultural and personal narratives and examine how these cultural narratives inform psychological and behavioral responses to disability. Participants identified pejorative cultural narratives that frame learning disability as illegitimate and an indicator of low intelligence and worthlessness. Participants also noted that having a disability helped them understand their learning challenges while also restraining them from attaining goals. They reported that having a disability led them to experience shame, embarrassment, and anger, which threatened their positive self-concept. In response to these, some participants tried to minimize the effects of the disability and


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pass as nondisabled; other participants developed a rights-based perspective and proactively sought to reduce the effects of pejorative cultural narratives. Last, participants pursued a college degree as one step toward transforming cultural and personal narratives. These findings expand previous understandings of disability and, while clarifying and informative, are not surprising. These themes of disability are similar to those articulated in sociopolitical analysis (Charlton, 1998; Fine & Asch, 1988; Linton, 1998), and these oppressive narratives appear to persist across various forms of disability, gender, and racial/ethnic groups. The finding of an apparent decreased emphasis on being perceived as weak due to their disability may be unique to people with learning disabilities, who lack easily observable evidence of disability. Similarly, individuals with learning disabilities might encounter challenges establishing the legitimacy of their impairment and gaining the trust essential to securing necessary supports and accommodations. These findings highlight the pejorative misperceptions of disability that persist more than a decade and a half after the passage of the Americans with Disabilities Act (ADA) and nearly four decades after the beginning of the Disability Rights Movement. In considering individual narratives, participants in this study, like others, articulated the benefits of having a label, including being able to better understand learning challenges and access to supports (Barga, 1996) and shared the concern that their disability might keep them from achieving certain goals (Beilke & Yssel, 1998). Furthermore, whether they identified benefits or concerns linked to their disability, participants noted feelings of shame, embarrassment, and anger toward having the disability (Beilke & Yssel, 1999; Milsom & Hartley, 2005; Roer-Strier, 2002). Notably absent are positive perceptions of disability identity (Gill, 1997), which might be harder to embrace while living with other marginalized social identities. This finding was confirmed by Ostrander (2008) and Hernandez (2005) in their work with minority individuals who acquired a disability as a result of gun violence. The theme of disability pride and positive disability identity appears to be linked to whiteness and middle- or upper-middle-class status. It appears that oppressed and marginalized individuals with disabilities find little comfort on their disability experience, which becomes one more layer in their oppressive world. Findings from this study and others highlight how individual and sociocultural factors inform the ways participants choose to address their disability. Minimizing the effects of their disability may be related to passing as nondisabled as a coping strategy reported by participants elsewhere (Barga, 1996) and, more rarely here, the adoption of an entitlement or rights perspective (Beilke & Yssel, 1998). This may be related to a lack of a sense of entitlement among participants that also reflects their cultural and class status backgrounds. Latino immigrants in particular have a hard time understanding their rights and gaining access to support services because those are typically absent from their personal experiences in their countries of origin. This trend toward minimization of their disability experience was particularly strong among younger participants who wanted to try adult pursuits independently, relying on their own skills and abilities, without accessing disability services and opening themselves to associated stigma. In addition, the

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Latino young women who participated in this study were also confronting the poor expectations of their family members, who did not appreciated their efforts to pursue a college education. But being in college actually validated their cultural immersion in U.S. society and their realization of education as a mechanism for social mobility. Among the unique contributions of the current study is the development of a better understanding of how age and privilege may inform the development of a rights-based perspective of disability and conscious efforts to transform narratives. In general, older participants had gained more of an appreciation and understanding of their disabilities and rights and were more aware and accepting of their need for accommodations and services. As they accessed and advocated for these services and supports to promote their success, they also opened themselves up to disability stigma as well as the opportunity to adjust cultural narratives. Developing a rights perspective might be harder for individuals who have not known much privilege in their lives and who fight ethnic and socioeconomic barriers in addition to their disabilities; those who do achieve in the face of many negative messages from contemporary society might be particularly resilient. Future research should examine variations in rights awareness and use among diverse groups. The greater observed familiarity with their rights among individuals from European American, middle- to upper-class backgrounds (Beilke & Yssel, 1998, 1999; Greenbaum, Graham, & Scales, 1995; Hall, Spruill, & Webster, 2002; Milsom & Hartley, 2005) supports the perspective that as people accumulate marginalized statuses, there may be fewer resources and supports to address their needs. Consequently, they may have less knowledge of and thus less access to resources and opportunities (Vernon, 1999). This finding also adds evidence that individuals from lower-income backgrounds may have less of a sense of entitlement (Balcazar, in press). Notable here is that at least some participants, those with more experience, had a clearer sense of entitlement, suggesting that as people age, their critical awareness develops. Obtaining a rights perspective among this group of participants may be challenging because youth often reject the implications of their learning disability. Also, they come from backgrounds marked with greater disadvantage (including parental immigration) than others studied previously. In rejecting the disability, participants do not acknowledge the rights they merit as a person with a learning disability. Though they may avoid stigma, they are also less likely to access supports; this reluctance to accessed needed supports may be related to failure (Trainin & Swanson, 2005). Participants also reported strategies used to ward off the integration of the pejorative narratives into their self-concepts. With these responses to oppression and pursuit of higher education, participants demonstrated their resilience and potential to thrive in a world that doubts their aptitude to do so even with little connection to the disability rights movement. The prevalence of these strategies may reflect a heightened need for resistance in the presence of multiple forms of oppression (Harper, 2005; Prilleltensky & Gonick, 1996). Of note, no one reported engaging in any organized, collective activity aimed at group, organizational, community, or societal change. Working


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at the individual level is likely a critical first step toward claiming one’s dignity and a positive sense of self (Balcazar, Keys, Bertram, & Rizzo, 1996). This individual focus might be necessary and perhaps unavoidable when confronting multiple forms of oppression without belonging to communities that positively respond to their multiple sociopolitical minority statuses. Working toward a framework that holds society accountable for oppression and demands social change rather than individual adaptation may, in some instances, rely first on the development of one’s inner strength before connections to those facing similar injustices can be constructed and a social movement initiated. Developing a framework that liberates the oppressed individual from individual blame for social inequalities may initiate a larger individual and collective journey toward social justice (Nelson & Prilleltensky, 2005; Ryan, 1971). Another interesting finding for future examination is whether ethnic minority young men with learning disabilities from low-income backgrounds, more than their female counterparts, perceive postsecondary education as an important way to modify negative cultural scripts. It may be that these men, given their desire to be seen as able to make traditional male contributions, are more aware that a college degree has traditionally increased one’s employability and income (Hart, Mele-McCarthy, Pasternack, Zimbrich, & Parker 2004; Madaus, 2006). That is, these men may strive to fulfill traditional male roles through pursuit of postsecondary education. Findings of this study highlight the need to continue to work toward social change, particularly among multiply marginalized groups and those whose needs may be less visible. This work should be undertaken at multiple levels and through multiple channels. At the individual level, family members and educational professionals can work with such youth to help them develop critical awareness of their social reality. Critical awareness might include attending to developing positive disability identity and understanding oppression. This critical awareness can help lead to more positive self-concepts and personal stories that triumph over pejorative dominant cultural narratives about their identities. As Freire (1970) argued, such awareness can lead individuals to seek to transform their social reality and in turn transform society. Similarly, family members and educational professionals can expose youth to the socioecological model of disability as well as information about their legal rights and responsibilities from an early age, create advocacy clubs where these youth can learn from and support one another, and connect them to successful adults with similar disabilities may help achieve these goals (McDonald, Balcazar, & Keys, 2005). This latter point—connecting youth with disabilities to other adults with disabilities—may be a particularly important one for family members to attend to, given that the majority of youth with disabilities are raised by non-disabled parents (Charlton, 1998). Building greater awareness among educational professionals who serve these young adults may also help counter the distrust and lack of awareness of and knowledge about accommodations that persists in many settings. Educational professionals need to develop a critical view of our role in perpetuating the oppression of the individuals with whom we work. Are we challenging victim-blaming approaches to treatment and rehabilitation, as well as institutional practices that undertreat and overcontrol people of color with

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disabilities? What are we doing to promote a more positive life and perception of those with disabilities? We all need to be more critical of our roles in maintaining the status quo and keeping oppressed populations content with and constrained by their reality. Attending to social change at the institutional and cultural levels is also critical. Future efforts to examine and develop the capacity of settings to serve their diverse communities should be undertaken (Balcazar, Keys, Ortiz, & Garate, 2005). Currently, there is less support for group action and solidarity to address societal conditions for those facing multiple forms of marginalization than for those addressing single oppressions. We need to build social movements around multiple identities. A concurrent focus on fighting discriminatory policies and socialization channels that continue to advance pejorative narratives of sociopolitical minority groups is essential. Individuals with disabilities, family members, and professionals can work together toward these goals. For example, we can create advocacy groups that work with the media to provide positive depictions of minorities with disabilities. We can also promote the professional development of minorities with disabilities to increase the number of them who pursue professions where they have the opportunity to shape and influence new generations of individuals with and without disabilities.

NOTE Some portions of this research are reported in: McDonald et al. (2007).

REFERENCES Balcazar, F. E. (in press). Cambio social y la psicología de la liberación. Primera Conferencia Internacional de Psicología Comunitaria, Universidad de Puerto Rico, Río Piedras. Balcazar, F., Keys, C., Bertram, J., & Rizzo, T. (1996). Advocate development in developmental disabilities: A data-based conceptual model. Mental Retardation, 34, 341–351. Balcazar, F., Keys, C., Ortiz, G., & Garate, J. (2005, August). The College Connection Model: Enabling youth with disabilities to succeed in higher education. Rehabilitation Services Administration Project Directors 8th Annual Conference. Washington, DC. Banks, M. E., & Kaschak, E. (Eds.). (2003). Women with visible and invisible disabilities: Multiple intersections, multiple issues, multiple therapies. New York: Haworth. Barga, N. (1996). Students with learning disabilities in education: Managing a disability. Journal of Learning Disabilities, 29, 413–421. Beilke, J., & Yssel, N. (1998). Personalizing disability: Faculty-student relationships and the importance of story. Journal for a Just and Caring Education, 4(2), 212–223. Beilke, J., & Yssel, N. (1999). The chilly climate for students with disabilities in higher education. College Student Journal, 33, 364–371. Block, P., Balcazar, F., & Keys, C. (2001). From pathology to power: Rethinking race, poverty, and disability. Journal of Disability Policy Studies, 12, 18–39.


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Brandt, E., & Pope, A. M. (1997). Enabling America: Assessing the role of rehabilitation science and engineering. Washington, DC: National Academies Press. Charlton, J. (1998). Nothing about us without us: Disability, oppression, and empowerment. Berkeley: University of California Press. Fine, M., & Asch, A. (1988). Women with disabilities: Essays in psychology, culture and politics. Philadelphia: Temple University Press. Freire, P. (1970). Pedagogy of the oppressed. New York: Continuum. Gill, C. J. (1997). Four types of integration in disability identity development. Journal of Vocational Rehabilitation, 9, 39–46. Greenbaum, B., Graham, S., & Scales, W. (1995). Adults with learning disabilities: Educational and social experiences during college. Exceptional Children, 61, 460–471. Hall, C., Spruill, K. & Webster, R. (2002) Motivational and attitudinal factors in college students with and without learning disabilities. Learning Disability Quarterly, 25, 79–86. Harper, G. (2005). A journey towards liberation: Confronting heterosexism and the oppression of lesbian, gay, bisexual and transgendered people. In G. Nelson & I. Prilleltensky (Eds.), Community psychology: In pursuit of liberation and well-being (pp. 382–404). New York: Palgrave Macmillan. Hart, D., Mele-McCarthy, J., Pasternack, R., Zimbrich, K., & Parker, D. R. (2004). Community college: A pathway to success for youth with learning, cognitive, and intellectual disabilities in secondary settings. Education and Training in Developmental Disabilities, 39, 54–66. Hernandez, B. (2005). A voice in the chorus: Perspectives of young men of color on their disabilities, identities, and peer-mentors. Disability and Society, 20, 117–133. Holstein, J., & Gubrium, J. (1998). Phenomenology, ethnomethodology and interpretive practice. In N. Denzin & Y. Lincoln (Eds.), Strategies of qualitative inquiry (pp. 137–157). Thousand Oaks, CA: Sage. Keys, C. (1993, May). Empowerment through advocacy. Presentation at the Annual International Conference of the Young Adult Institute, New York. Kloos, B. (2005). Creating new possibilities for promoting liberation, well-being and recovery: Learning from experiences of psychiatric consumers/survivors. In G. Nelson & I. Prilleltensky (Eds.), Community psychology: In pursuit of liberation and well-being (pp. 426–447). New York: Palgrave Macmillan. Kruse, B., Elacqua, T., & Rapaport, R. (1998). Classroom accommodations for students with disabilities: A needs assessment. Journal of College Student Development, 39, 296–298. Linton, S. (1998). Claiming disability: Knowledge and identity. New York: New York University Press. Lyon, G. R., Fletcher, J. M. , Shaywitz, S. E., Shaywitz, B. A., Torgesen, J. K., Wood, F. B., et al. (2001). Rethinking learning disabilities. In Progressive Policy Institute, Rethinking special education for a new century. Thomas B. Fordham Foundation. Madaus, J. W. (2006). Employment outcomes of university graduates with learning disabilities. Learning Disabilities Quarterly, 29, 19–31. McDonald, K., Balcazar, F., & Keys, C. (2005). Youth with disabilities. In D. DuBois & M. Karcher (Eds.), Handbook of youth mentoring. Thousand Oaks, CA: Sage. McDonald, K., Keys, C., & Balcazar, F. (2007). Disability, race/ethnicity and gender: Themes of cultural oppression, acts of individual resistance. American Journal of Community Psychology, 39, 145–161. Milsom, A., & Hartley, M. T. (2005). Assisting students with learning disabilities transitioning to college: What school counselors should know. Professional School Counseling, 8(5), 436–441.

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Moos, R. (1996). Understanding environments: The key to improving social processes and program outcomes. American Journal of Community Psychology, 24, 193–201. Morris, J. (1993). Gender and disability. In J. Swain, V. Finkelstein, S. French, & M. Oliver (Eds.), Disabling barriers—enabling environments (pp. 85–92). London: Sage. Nagi, S. (1991). Disability concepts revisited: Implications for prevention. In A.M. Pope & A. R. Tarlov (Eds.), Disability in America: Toward a national agenda for prevention (pp. 309–372). Washington, DC: National Academies Press. Nelson, G., & Prilleltensky, I. (2005). Community psychology: In pursuit of liberation and well-being. New York: Palgrave Macmillan. Ostrander, R. N. (2008). Meditations on a bullet: Violently injured young men discuss masculinity, disability and blame. Child and Adolescent Social Work Journal, 25, 71–84. Pledger, C. (2003). Discourse on disability and rehabilitation issue: Opportunity for psychology. American Psychologist, 58, 279–284. Prilleltensky, I., & Gonick, L. (1996). Polities change, oppression remains: On the psychology and politics of oppression. Political Psychology, 17, 127–148. Prilleltensky, I., & Nelson, G. (2002). Doing psychology critically: Making a difference in diverse settings. New York: Palgrave Macmillan. Rappaport, J. (2000). Community narratives: Tales of terror and joy. American Journal of Community Psychology, 28, 1–24. Rioux, M. (1997). Disability: A place of judgment in a world of fact. Journal of Intellectual Disability Research, 41, 102–111. Roer-Strier, D. (2002). University students with learning disabilities advocating for change. Disability and Rehabilitation, 24(17), 914–924. Ryan, W. (1971). Blaming the victim. New York: Vintage Books. Snyder, S. (2006). Disability studies. In G. Albrecht (Ed.), Encyclopedia of disability (pp. 477–490). Thousand Oaks: Sage. Stuart, O. (1992). Race and disability: Just a double oppression? Disability, Handicap & Society, 7, 177–188. Strauss, A. (1987). Qualitative analysis for social scientists. Cambridge: Cambridge University Press. Strauss, A., & Corbin, J. (1990). Basics of qualitative research. Newbury Park, CA: Sage. Strauss, A., & Corbin, J. (1998). Grounded theory methodology: An overview. In N. Denzin & Y. Lincoln (Eds.), Strategies of qualitative inquiry (pp. 158–183). Thousand Oaks, CA: Sage. Tesch, R. (1990). Qualitative research: Analysis types and software tools. Philadelphia: Routledge-Falmer. Trainin, G., & Swanson, H. L. (2005). Cognition, metacognition, and achievement of college students with learning disabilities. Learning Disabilities Quarterly, 28, 261–272. Trickett, E., Kelly, J., & Vincent, T. (1985). The spirit of ecological inquiry in community research. In E. Susskind & D. Klein (Eds.), Community research: Methods, paradigms, and applications (pp. 283–333). New York: Praeger. Vernon, A. (1999). The dialects of multiple identities and the disabled people’s movement. Disability & Society, 14, 385–398. White, G. (2005). Ableism. In G. Nelson & I. Prilleltensky (Eds.), Community psychology: In pursuit of liberation and well-being (pp. 405–425). New York: Palgrave Macmillan.

CHAPTER 15

Persons and Nonpersons: Intellectual Disability, Personhood, and Social Capital among the Mixe of Southern Mexico George S. Gotto IV

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his chapter is based on 10 months of ethnographic fieldwork among the Mixe of San Marcos Moctum in Oaxaca, Mexico. The chapter focuses on the lives of two men with intellectual limitations and their ability to achieve social personhood by investing in the social capital of their community. It shifts the discussion of disability away from the body and toward social relationships by focusing on social personhood and how it is achieved. Social personhood refers to a society’s understandings, norms, and laws regarding how an individual will be represented and treated as well as the degrees of autonomy or dependence he or she will possess throughout life. Using the concept of social personhood, the chapter illustrates that in societies that operate on social capital, the physical condition of the body is much less disabling than the condition of social relationships. The Mixe, who live in the mountainous northeastern section of Oaxaca, are from one of the poorest areas in one of the poorest states in Mexico (Higgins & Coen, 2000; Murphy & Stepick, 1991). Due to the mountainous region, the Mixe have been both culturally and geographically separated from the rest of Oaxaca over time (Beals, 1945; Kuroda, 1984; Nahmad Sitton, 1965). This separation, combined with the poverty that surrounds them, has meant the Mixe traditionally lacked capital in terms of surplus, investment in production, and circulation of commodities beyond their territorial borders. As a result, they invested in social relations with the expectation of returns that enhance group members’ life chances. Social theorists refer to this type of investment as social capital (Bourdieu, 1986; Coleman, 1988; Lin, 1999; Putnam, 2000). Investment in the social capital of their communities came to be the determining factor in achieving social personhood among the Mixe

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(Gotto, 2007). The purpose of this chapter is to discuss how individuals with intellectual disabilities fare among the Mixe, where investments in social relations determine quality of life. Are they able to achieve social personhood? The answer to this question is rooted in ethnographic fieldwork in 2003 among the Mixe of San Marcos Moctum (hereafter Moctum). During these months, I lived and worked in both Moctum and Oaxaca City, where many people from Moctum migrate to find jobs. I spent much of this time with two men who had intellectual disabilities and their families. The life histories of these two men form the basis of this chapter. However, to provide a context for their lives, I briefly discuss social personhood, the community of Moctum, and the forms of social capital that shape the life of the community.

SOCIAL PERSONHOOD Social personhood refers to a society’s understandings, norms, and laws regarding how an individual will be represented and treated as well as the degrees of autonomy or dependence he or she will possess throughout life (Gotto, 2007; Janzen, 2002). Personhood is not an intrinsic property of the individual. It is provided and legitimated by society. Luborsky (1994) wrote, “Personhood is bestowed by society, and earned by achieving and maintaining expected social roles and ideals” (p. 240). Extending this thought Fortes (1987) explained, “the individual person is not a passive bearer of personhood; he must appropriate the qualities and capacities, and the norms governing its expression to himself” (p. 251). Lynn Morgan (1996) explained that personhood is a negotiated, dynamic concept contested through many overlapping public discourses. Medical anthropologists have used the concept of social personhood to serve as a corrective for an overemphasis on “the body” in ethnomedical literature (Pollock, 1996). In fact, several anthropologists make the case that before all else the body is the literal instantiation of social relationships (LiPuma, 1998; Morgan, 1996; Snyder, 2002; Strathern, 1988). From conception to disintegration, the body is created, understood, and acted on through social relationships. The concept of social personhood enables us to examine the influence these relationships have on individual lives. In terms of disability, Ida Nicolaisen (1995) argued that “it is by looking closer at the symbolic forms through which personhood is both perceived and expressed that we may dig deeper into the conceptualizations that structure . . . understanding of and reactions toward disability” (p. 49).

THE MIXE OF SAN MARCOS MOCTUM Moctum sits on a shelf of land midway down a mountain the villagers call Cerro del Huracán (Hurricane Hill). It is an ancient site where it is indeed difficult to look in any direction without seeing the remains of a pre-Hispanic culture—a ball court, stones carved with hieroglyphs, pottery pulled up with the plow, and the Cerro del Huracán itself. From a distance, Cerro del Huracán looks like a perfect trapezoid. People from Moctum and the

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neighboring community, Totontepec, explained that it was shaped by the pre-Hispanic Mixe and that it has a series of altars, which lead to the top. According to the locals, before the arrival of the Spanish, Moctum was a holy city occupied by priests and, they say, the legendary Mixe king, Kong Oy. As of the 2000 Mexican census, Moctum had a population of 176 men and women living in 31 households (INEGI, 2001). My own count in March 2003 included 37 inhabited houses, although 4 were clearly part of a larger household, meaning they shared a kitchen and worked the same fields. In Moctum, I encountered six person-making factors directly related to the social capital of the community. Two of these factors, family and to a lesser extent agriculture, enabled an individual to make the investment in social capital necessary to achieve full adult social personhood. Migration is another person-making factor that enables young Mixe men and women in particular to make the necessary investments in social capital. The last three factors represent direct investment in the social capital of the community and are all related to “giving service” to the community. These service activities were participation in the civic life of the community, the ecumenical life of the community, and community service projects called tequio. These person-making factors are not unique to Moctum. For example, anthropologists have recognized the importance of the family since Ralph Beals conducted the first ethnographic study of the Mixe. Beals (1945) wrote, “family relationships loom large in the life of the Mixe” (p. 38). Salamon Nahmad Sittón (1965) added that the family is the nucleus of Mixe social organization, unity, and cohesion. Furthermore, maintaining order and discipline with the family nucleus is the basis for order in the community. Belonging to a family and fulfilling social obligations in a family are at the core of Mixe social personhood. In fact, in Moctum, belonging to a family was the independent variable that influenced success in all other person-making activities discussed here. Generally, the family unit is composed of two generations (parents and children), but it is not unusual to encounter three generation in a household (Beals, 1945; Kuroda, 1984; Lipp, 1991; Nahmad Sittón, 1965). In Moctum, family households occupied an area that contained separate buildings for bedrooms and kitchens. Their plot often contained a vegetable garden and space for chickens, turkeys, and sheep to range freely. Traditionally, the family was an independent economic unit that produced everything it needed to survive. This is still true in that family members continue to work the land together, but economic activity is no longer restricted to the family unit. Throughout the state of Oaxaca, very little money is available for governmental social and rehabilitation service programs that support individuals in need. In Moctum these programs are nonexistent. As a result, the family is the primary provider of long-term health care, child care, financial assistance, food, and shelter. Thus, larger family units (i.e., more kinship and economic ties) are always preferable because the family provides the necessities for survival. Without family support, it becomes very difficult to participate in the social relationships, the forms of social capital discussed next, that influence the achievement of social personhood. Moctum is not an isolated case in this respect. Catherine Marshall and I found a similar situation in the Mixe town

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of Totontepec. The family member of a man with quadriplegia told us, “If it was not for us, he would not live, because we do everything for him; he can not do anything, but he speaks and he did not lose his mind” (Marshall, Gotto, & Bernal Alcántara, 1998, p. 70). In terms of religion, which is very important in the lives of Moctum residents, the majority attended the Seventh Day Adventist Church, which arrived to the Mixe district in 1965 (Bernal Alcántara, 1991). I counted only four households in Moctum that pledged allegiance to the Catholic Church. They were forced to attend services in the neighboring community of Totontepec, because the Moctum Catholic Church had no full-time priest. Agriculture is another principal person-making aspect of life in Moctum. This has been true for the Mixe in general for centuries, with maize being the principal crop (Beals, 1945; Bernal Alcántara & Ortega Rivera, 2003; Lipp, 1991; Nahmad Sittón, 1965). Maize is certainly the most important crop for the residents of Moctum. In fact the word Moctum means, “place of maize” or “place where they work or plant maize” (Moc = maize; tum = to work). For community members in Moctum, working the land is critical to achieving full adult personhood, which is to say, one of the primary avenues to becoming an adult is to sow and harvest crops on communal land. Because all land was communal in Moctum, it was only distributed to those people who “gave service” to the community.

GIVING SERVICE One of the first questions I asked people from Moctum was, “Which Mixe customs are the most important to you and your community?” Almost without exception the answer to this question was dar servicio (give service). When I asked what they meant by “giving service,” they provided a variety of examples of service activities that benefited their community, each of which fell within one of the following categories: the system of usos y costumbres (uses and customs), which consisted of a series of civic posts and responsibilities; the religious life of the community, marked by a series of ecumenical posts and responsibilities; and community service projects called tequio. To achieve full adult social personhood, community members had to participate in each of these service activities. Robert Putnam (2000) discussed “bonding” forms of social capital, which are “by choice or necessity, inward looking and tend to reinforce exclusive identities and homogeneous groups” (p. 22). For the Mixe, giving service through these three communal activities directly bonded an individual with every other person in the community. It constituted a kind of sociological superglue that reinforced specific reciprocal relationships, mobilized solidarity, and created social persons. This was particularly important in a community like Moctum where, as I mentioned, there were no governmental resources to support community maintenance projects, not to mention social and rehabilitation service programs. In addition to being bonding forms of social capital, activities related to “giving service” are examples of what Nan Lin (1999, p. 40) called


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“instrumental actions,” which are taken to obtain resources not possessed by the actor. Three returns result from instrumental action: economic return (i.e., customer base for businesses, income made from agriculture, land), political return (i.e., hierarchical positions achieved through participation in the system of usos y costumbres), and social return (i.e., personal reputation or trust from the community). For example, Moctum owned a total of 520 hectares (1,285 acres), which was only distributed to community members who held civic posts and contributed to tequio projects with labor or money. Furthermore, business entrepreneurs could only expect to be successful if they served the community through civic and ecumenical posts as well as tequio. Additionally, both the Seventh Day Adventist and the Catholic Churches held two festivals each year, which helped distribute the community’s food supply, including maize, vegetables, and meat. Only those who gave service to their religious community could expect to benefit from this redistribution of resources. Last, all citizens benefited from these service activities in the forms of road construction, law and order, and water supply, among others. Individuals who were only loosely bonded or not at all bonded to the community through participation in the political system (usos y costumbres) and the tequio projects suffered consequences including fines, incarceration, repeal of land usage rights, and in the most severe cases expulsion from the community, thereby making them nonpersons. A fourth activity, which has become increasingly important to giving service to the community among the Mixe over the past 50 years, is migration. Migration is common to most communities in Oaxaca (Cohen, 2002; 2004; DIGEPO, 1999; Grimes, 1998). This is certainly true in Mixe communities. Most commonly, the Mixe migrate to Oaxaca City, Mexico City, and the United States (Gotto, 2007; Romer, 1982). The decision to migrate is a strategic decision made by a household with specific goals in mind, such as a new house, new business, livestock, clothing, and so on. Like the three forms of giving service, migration is an “instrumental action” (Lin, 1999), which is taken to obtain resources not possessed by the actor. However, unlike those avenues for giving service, migration is an example of “bridging” social capital, which is “better for linkage to external assets and for information diffusion” (Putnam, 2000, p. 22). One result of migration is the establishment of transnational communities. Several scholars have noted that transnational migrants sustain simultaneous social relations, linking communities of origin and settlement (Adler, 2000; Appadurai, 1991; Cohen, 2001; Kearney, 1995; Kral, 2004). The purpose of establishing transnational communities is clearly to improve the economic well-being of the individual and his or her family. However, Mixe communities such as Moctum expect to benefit as a whole from migration through the redistribution of individual gains through the system of usos y costumbres, religious festivals and service campaigns, and tequio projects. In fact, in Moctum if the external assets gained through migration were not linked back to the community, people were stripped of their land rights, incarcerated if they returned without paying hefty fines, or expelled from the community, making them nonpersons. I encountered three nonpersons from Moctum, meaning they failed to participate in the forms of social capital that

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bonded them to the community. In one case, the family’s house stood empty and their land was redistributed to community members in good standing. In another case, a woman was not allowed to return to the community even though her mother and three children lived in the house for which she paid. She sent money to her family but not to her community and was therefore not welcome to return. The third case of nonpersonhood was a man with intellectual disabilities who was unable to give service to the community and invest himself in the social relationships that shaped community life. However, this man did not become a nonperson solely because of his disability. To illustrate this, I highlight his life history, and that of his second cousin who also had an intellectual disability. Even though they were cousins with similar family backgrounds, the trajectories of their lives were quite different.

INTELLECTUAL DISABILITY, SOCIAL CAPITAL, AND SOCIAL PERSONHOOD IN MOCTUM Fernando Fernando1 was 32 years old in the summer of 2003 and the first-born child in his family. No one in his family was able to tell me about his intellectual disability other than to say he was “slow” or had “limitations.” He was able to speak two languages (Mixe and Spanish), although he was unable to read or write more than a few words. Many of the supports he received from his family did not differ from those of any other unmarried young man in his community. For example, his family provided food, and his mother prepared his meals. His sister washed his clothes. Like other unmarried young men, he did not have his own land or livestock. Rather, he worked his father’s land with his father and his youngest brother. Fernando lived in his own one-room house, although it was located on his parent’s land. It was a small adobe structure with a tar paper roof and dirt floor. The house was initially built for Fernando’s younger brother Jose, who married and now had his own household. In terms of his role within his family, the only difference between Fernando and any other unmarried young man was age. It was rare to find an unmarried man over the age of 21 in Moctum who still lived in his parent’s home. Certainly, there were young men over the age of 21 who were unmarried, but they had all migrated to large Mexican cities or to the United States. These young men contributed money to their parents’ households, and they had much more independence than Fernando. In short, at the age of 32, Fernando had the familial role of an adolescent. To fully recognize this, it is helpful to compare Fernando’s role with the roles of his three younger brothers, Jose, Nicolas, and Oscar. Jose was 28 years old. He was married and had four children. He had his own household and his own plots of land for agriculture. During the summer of 2003, he lived in New Jersey, where he worked at a golf course. He had been in New Jersey for four years. As a result, his wife and children lived in a three-bedroom home made from concrete bricks, with a concrete roof, tile


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floor, and factory-made doors and windows. Jose continued to contribute to his parent’s household for special needs and business ventures. He also paid “cooperation” fees to the community for special projects, which ensured that he would be able to return. He was scheduled to return in 2004 to fill a civic post to which he had been elected. Nicolas was 21 and lived and worked with Jose in New Jersey. He migrated to New Jersey when he was 17. He was not married, but he contributed a great deal of money to his parents’ household. As a gift to his parents, he recently paid for the construction of a new four-room addition to their house. This building was constructed of concrete bricks, with a concrete roof, a concrete floor, and it had factory-made doors and widows. Nicolas also contributed to his parent’s household for any special needs and business ventures they had. In addition, Nicolas sent gifts from the United States, such as shoes, clothes, and basketballs to his brothers and sisters who still lived with his parents, including Fernando. Last, Nicolas sent money to the community to stay current with his cooperation fees. Oscar was 15 years old and, like Fernando, he lived in his parents’ household. He was just starting to consider migrating to the United States to live and work with his brothers. At the time, he worked in the fields with his father and Fernando. He also worked in the family’s small store when he was needed. He had also just been elected to his first civic post, the lowest level post known as a topil. The responsibilities of this post included (but were not limited to) serving as an assistant to the mayor, cutting firewood for the community, going door to door with community announcements, delivering mail, and acting as a policeman. Fernando was also a topil. At the age of 32, he had yet to be elected to a higher level civic post. Fernando was a farmer. In fact, that was his defining characteristic. With the exception of his time in church and at meals, his waking hours were devoted to agricultural pursuits. A typical day began at 5:30 a.m. when he went to church services for an hour. He then had breakfast and by 7:30 a.m. he was working in the fields, herding cattle, or building fences. He worked until noon and then returned to the house for lunch. He was back in the fields no later than 1:30. He then worked until supper. He went to church at 7 p.m. in the evening and retired for the night no later than 9 p.m. Fernando was acknowledged as one of the hardest workers in Moctum. His father, Carlos, would give him a task and know that Fernando would not stop until it was finished. Because he was dependable and willing to work in the fields, Fernando enabled his father, mother, and siblings to pursue other economic activities. These activities included the management of their cattle and mercantile businesses—activities that would be nearly impossible to perform without Fernando. His work in the fields also lessened the initial hardship associated with his brothers’ migration to the United States. By the same token, Fernando’s quality of life was greatly improved by his large family. Due to his intellectual disability, he was not able to manage the organizational details of farming. His father, mother, brothers, and sisters directed nearly all of his activities, telling him when and what to plant, when to clean the fields, and when to harvest the crops. They also managed the storage and processing of the food. These are all activities that would have

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been difficult for Fernando to accomplish on his own. However, because his abilities were so valuable, his efforts improved the quality of life for his entire family. Fernando’s abilities also made him quite valuable to the community and allowed him to participate in the system of usos y costumbres, at least to a certain extent. For example, his propensity to work hard and follow orders made him an ideal person to work on tequio projects. His ability to communicate in two languages, his willingness to follow orders, and his strength also made him an ideal topil. When I asked people in Moctum if Fernando would ever be nominated for a position other than topil, the common answers were: “No, he’s too stupid” or “No, he is slow.” In using these terms people were referring to Fernando’s seemingly perpetual naiveté. He lacked the ability to critically analyze a situation and understand consequences. For example, he would often fall for the same prank several times in a row. An illustration: during a large tequio project in which the community was building a stone wall around the cemetery, a man kept throwing green peaches at Fernando when his back was turned. When Fernando would turn around to see what hit him in the back, the man would say, “That peach fell from the tree and hit you.” Fernando would smile, make some comment, and turn back to his work. This happened several times before Fernando finally saw the man throw a peach. Another example comes from playing basketball, which was very popular in Moctum. Several games were played each night unless it rained. When Fernando would guard someone, that person would say, “Fernando, what’s that?” and point in some direction. He invariably looked away and allowed his opponent to drive to the basket and score. Even though he always fell for pranks, Fernando was not without feelings. When he realized he had been tricked, he became very upset and would often want to fight, although he was learning to control his temper “like a good Christian.” The evening after the peaches were thrown at him he said, “Manuel was throwing those peaches at me, but I didn’t fight him. My dad says that was good because I am a Christian. That was good, right?” A final example of Fernando’s limitations had to do with his understanding of numbers and the passage of time. I once asked him how long it took to walk to Candelaria, another town in the Mixe district. He told me it took five hours to get there. Then, after a few seconds he asked, “Is five hours a long time?” When I told him five hours would be a long walk, he said, “Okay, then it takes five hours to get there.” These intellectual limitations ensured that Fernando would never rise beyond the level of a topil in Moctum. However, everyone I spoke to agreed that Fernando was a comunero, a community member who could expect to benefit from the investments he made in the community. He participated in tequio projects, he served as a topil, and he made enough money to pay cooperation fees when they were required for town projects. As a result, he was allowed to have his own house and work his family’s land. Additionally, Fernando was a member of a large and prosperous family unit in Moctum. Because he was able to pool his limited resources with those of his family, he could participate more fully in community activities.


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Fernando had been married for a brief period. It was an arranged marriage that, had it been successful, would have linked two of the largest families in Moctum. However, after two weeks the young woman, who was a single mother, decided to leave the marriage, and she and her child returned to her mother’s household. When I asked Fernando’s family members why she left, they only said, “She just wanted to leave.” When I asked Fernando’s former wife she only said, “I didn’t want to marry him.” In terms of religion, Fernando was a member of the Seventh Day Adventist Church. In fact, he was the first Seventh Day Adventist child to be born in Moctum. His parents were proud of this fact and often repeated it to me. Fernando loved his church and never missed a service. In my fieldnotes from Friday, July 4, 2003, I wrote, “Fernando looked at his watch and got almost giddy saying that in just a couple hours Santo Sabado (Holy Saturday) would start. He was truly excited about it and said he was looking forward to tomorrow and not having to work.” I spent much of my time in Moctum working with Fernando in the fields, and each Friday afternoon was the same. He provided a countdown until Santo Sabado began. He talked about the church service and sang his favorite songs. He asked me to sing songs from my church in El Norte (The North [USA]). He described the individuals in the church and their roles: Arnulfo was the Saturday School teacher because he understood the Bible. Rafael and Oscar played guitars but not as well as Jose. Renaldo said the prayers and sometimes he preached. Doroteo used to preach before he started drinking again. Fernando went to church twice a day on the weekdays and all day on Holy Saturday. On the weekdays he sat in the pews, but on the Sabbath he actively participated in the service as a deacon, sitting behind the pulpit with his father Carlos and Renaldo (the prayer and song leader). His role was to announce the songs and the Bible verses. He stood, announced a verse (given to him by Carlos), and asked if anyone from the congregation would like to read it. Or he would announce the title and page number of the next song. He also saw himself as the disciplinarian in the church. Three times during my stay in Moctum, he stood during the sermon and spoke harshly to people in the congregation for misbehaving. His remonstrations were aimed at women or children who were talking during the sermon or not paying attention. Each time, his father quietly told him to sit down. Clearly Fernando’s role was not the same as the other deacons who preached and led the congregation in prayer. However, he had been appointed to one of the most respected positions within his church’s structure. Two of Fernando’s brothers and three of his sisters had migrated either to the United States or Oaxaca City. Additionally, his youngest brother was planning to migrate to the United States in the near future. However, due to his intellectual disabilities, Fernando had only rarely gone beyond the borders of the Mixe district. He had taken short-term jobs to work in the fields of distant Mixe communities, but he was accompanied by family members or people from his community. In fact, the members of his family unit directed nearly all of his activities, telling him when to work, when to eat, and when to go to church. He needed this support from his family and the routines established

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by them. It would be extremely difficult for him to migrate unless his family accompanied him and provided the support he needed and instituted the routines that made him feel comfortable. Fernando’s parents were very nervous about letting him go anywhere outside of Moctum without a chaperone. For example, he once traveled with me to Oaxaca City, where we stayed at the home of one of my friends. Fernando’s parents were nervous about the trip, but they did not want to refuse to let him go. His father pulled me aside just before we boarded the bus and asked me to please keep Fernando very close. Carlos said, “He could get lost very easily and he wouldn’t know what to do.” Fernando was very excited about the trip but was very anxious about stoplights. We planned our trip a month in advance, and during that month he asked several times a day what would happen when we tried to cross the street at a stoplight. He was afraid the cars would go while he was walking in front of them and wanted me to assure him this would not happen. When we actually came to a stoplight in Oaxaca City, he waited with me on the sidewalk, and when I told him it was okay to walk, he bolted across the street as fast as he could and waited for me on the other side. When I caught up with him he said, “We made it. I was afraid. Do you think we can make it across the next street? How many more streets do we have to cross?”

Juan Juan is Fernando’s second cousin; their fathers are cousins. In 2003, Juan was in his late twenties and had very severe intellectual disabilities. He was unable to talk and did not seem to understand any words other than his own name. At one time his family was one of the most prominent families in Moctum, and according to people in Moctum, Juan received a great deal of care from his family. Unfortunately, his mother died, and his father went on an alcoholic binge from which he never recovered. Juan’s oldest brother was also an alcoholic and had been in the United States for the past five years. One of his other brothers was tragically killed when a tree he was chopping fell on him. His remaining brother lived in Moctum, was married and had three children, but had to work to support his household and he did not have the time or resources (i.e., large family) to provide quality support to Juan. In addition to his brothers, Juan had second cousins (including Fernando’s family), sisters-in-law, and nephews and nieces who lived in Moctum. But none of them supported him. Juan walked around Moctum in rags. He had no shoes. His hair was long and unkempt, and his legs, arms, and face were layered with dirt. As far as I could tell, when he had to relieve his bladder or his bowels, he did so in his clothes. During my stay in Moctum (nearly five months) he was bathed once. Whether Juan had to steal food to survive is unclear to me. In any case, he did steal food. As he made his rounds of the community, he often looked into people’s kitchens. If someone was in the kitchen, he stood at the door waiting for a tortilla. As often as not, he was shooed away with a broomstick. If no one was in the kitchen, he went in and ate as much food as he could before he was chased away. People often locked their kitchen doors when they


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left even for a short time to keep Juan out. He pilfered vegetable gardens and stole fruit from peach and banana trees. I saw children throw rocks at Juan and adults hit him with broom handles. His alcoholic brother returned to Moctum while I was there and told me, “He’s wild. He doesn’t want to be in the house or be washed. He just wants to be outside.” One day, while sitting on the steps of the town hall with a man named Luis, we watched Juan’s father (Doroteo) stumble down the road toward his home. Luis told me Doroteo used to be rich and that he wanted to live a long life so he went to a seer. He asked the seer if he was going to live a long life. The seer said, “You know a long life can sometimes be a curse.” Doroteo replied, “Not for me, I’m rich.” Then the seer told him he was going to have a long life. Doroteo was happy and celebrated, but then his wife died after a prolonged illness and his son was crushed by a tree. Another son is an alcoholic, lives in the United States, and does not support him. Luis concluded, “In the end, he suffers with these memories and his son Juan.” As is evident from this description, Juan lacked all of Fernando’s advantages. First, his intellectual disability was quite severe in that he was unable to speak, and although he responded to his name, he did not seem to understand any other commands or requests. However, he responded to tones or inflections of the voice. For example, I would say his name using different tones in my voice (happy, angry, and sad) and he would respond appropriately, particularly to happy and angry voices. Even though he was able to walk and seemed relatively fit, it was impossible for him to participate in any of the community projects. It seems plausible that with some assisted living support he may have been able to participate, however minimally, in community projects. But with the disintegration of his family, his natural support system, this was impossible. When I asked people if Juan was a comunero, responses varied from, “No” to “Well, he’s from here.” No one said “yes.” Juan’s family belonged to the Seventh Day Adventist Church in Moctum. Because he had severe intellectual disabilities, he was not able to actively participate in his church. However, it was common for him to wander into the church during a service and sit in one of the back pews. On one occasion in summer 2003, he walked up to the altar during the sermon and stood there until one of the deacons got up and led him to a pew in the back of the church. According to members of the church, when Juan’s mother was alive she always made sure he was bathed, well dressed, and his hair was combed when he entered the church. His father, Doroteo, was once a deacon and regularly preached on the Sabbath. However, following the death of his wife, he began drinking very heavily and no longer actively participated in the church. He was a regular attendee on the Sabbath, although I do not recall seeing him sit with Juan. Juan was not able to participate in agricultural activities due to the severity of his intellectual disabilities and the disintegration of his family. I have no doubts that with training and supervision, he could have participated in some agricultural activities, including harvesting and shucking maize. I watched him remove the peels from bananas, which is not much different than removing the husk from maize and indicated transferable skills that could have been applied to agriculture. The greatest barrier to Juan’s participation in agricultural activities was his lack of assisted living support.

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Migration was not in the realm of possibility for Juan. He was unable to leave his community for any reason given the lack of support he received from his family. However, according to other members of the community, he did leave on one occasion. No one knew exactly how long he was gone, but at some point the community realized he was missing and began to search for him. They searched for three days and eventually found him far down in the valley, sitting naked on a rock in the middle of the river. He was cold and hungry but otherwise healthy. The search party helped him across the river and back up to Moctum, and he never left again.

CONCLUSION How is it that Juan, a man with severe intellectual disabilities, was left to his own devices for survival? Even considering the disintegration of his family, why didn’t the rest of the community support him? These are questions I asked time and again during and after my fieldwork. The people of Moctum were unable to explain it succinctly. They viewed his situation as tragic, although not in the same way I did. To understand their perspective, it is important to remember that “the experience of disability is still embedded in cultural assumptions and social relations, the ‘local moral worlds,’ of which even the most committed empathetic humanism must take account” (Whyte, 1995). It is on the “local moral world” of Mixe from Moctum that I want to focus. The Mixe definition of social personhood is intimately associated with the Mixe conception of society. As I discussed earlier, there are six person-making factors in Moctum: family, agriculture, migration, service to the community through the system of usos y costumbres, service to the community through the auspices of the church, and participation in tequio projects. Each of these activities were investments that strengthened the social relations that bonded an individual to the community and reinforced specific reciprocal relationships, mobilized solidarity, and created social persons. Even migration, which is a bridging form of social capital that links individuals to external assets, was used to buttress investments in the social capital of the community. Next, I briefly discuss each of the person-making activities as they relate to Fernando and Juan. Family is at the core of Mixe society. In families where members gave service to the family, individual members were much more likely to experience success in the person-making social relationship that bonded them to the community. Fernando’s family is an excellent example—a transnational family with members in the United States, Oaxaca City, and Moctum, each of whom contributed to the well-being of the family. Fernando was not simply a man with intellectual disabilities who received support from his family. He was an integral part of his family, who through his work, enabled the family as a whole to expand both its economic and social capital. For example, because he worked so hard in the fields, his family was able to farm the land allotted to three comuneros (his father, brother Jose, and brother Nicolas), while his brothers accessed the external assets available in the United States. Thus


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the family earned more from their land and migration than would have been possible without Fernando. In turn, each of the family members was able to contribute more to the community. Juan, on the other hand, was not an integral part of his family. They had disintegrated due to a series of unfortunate events including alcoholism and death. Given his intellectual limitations, Juan would not have been able to contribute to his family’s quality of life on the same scale as Fernando, but he did have abilities that, with adequate support, could have been used to serve his family. Unfortunately, that support faded with the passing of his mother and one brother and the alcoholism of his father and another brother. As a result of these unfortunate events, Juan was not able to invest in the social capital of the community, nor was he able to support his family members to make the same investment. As I discussed, Fernando was a farmer. This was his most prominent role in his family and the community. Through his activities as a farmer he was able to invest in the social capital of church and community, which entitled him to a portion of the resources attached to those two institutions. Juan was unable to participate in agricultural activities due to his family’s disintegration, despite having the ability to pick fruit and vegetables, shuck corn, and engage in other agricultural activities. With the proper support, he could have helped himself and his family members properly invest in the social relationships related to agriculture. Fernando was able to fully invest in service activities (i.e., participation in the civic life of the community, the ecumenical life of the community, and community service projects called tequio). Although he never held a civic post beyond the lowest level, all civic posts were elected positions and engendered social respect. Fernando made himself available to serve; when called on to be a topil, he served. Additionally, he served as a deacon in his church and participated in all tequio projects. His investment in these activities meant that regardless of his limitations, he earned his social personhood by achieving and maintaining expected social roles and ideals. Juan, on the other hand, was not able invest in the social relations of his community and thereby achieve social personhood. Without the support of his family, this was impossible. Despite his intellectual disability, Juan was not treated differently from others (without disabilities) who failed to make the proper investments in the community. He, like them, became a nonperson in the eyes of the community. In a sense, the community made a concession for his limitations by allowing him to stay without being incarcerated or forced to pay a large fine. Nevertheless, his inability to participate in the social capital of the community remained the critical factor that determined his personhood status. Social scientists have long acknowledged that perceptions of bodily and intellectual difference vary cross-culturally (Albrecht & Verbrugge, 2000; Ingstad & Whyte, 1995; Turner, 2001). However, the focus is almost always on the body. One exception is the work of anthropologist Mac Marshall, who examined notions of impairment in three Caroline Island communities and discovered that physical impairments are not usually regarded as disabling because they do not affect the ability to take part in social relationships

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(Marshall, 1996). Like Marshall’s work, this chapter shifts the discussion of disability away from the body and toward social relationships. As I have shown, Fernando’s intellectual impairment was not disabling because it did not affect his ability to take part in social relationships. The condition in Juan’s life that was disabling was not his intellectual limitations as much as his lack of a healthy family. Fernando had the ability, with family support, to give service and thereby invest in the social capital of his community. In the eyes of the Mixe, Juan’s lack of family and inability to give service to his community was the tragic part of his life, not the treatment he received from his community, as this was what any nonperson could expect. Within the field of disability studies on a global scale, this case study is most relevant to the self-determination research for individuals with intellectual disabilities. Self-determination refers to “(a) providing individuals with adequate opportunities to be the causal agent in their lives, make choices, and learn self-determination skills; (b) enabling them to maximally participate in their lives and communities; and (c) ensuring that supports and accommodations are in place” (Wehmeyer, 1998, p. 14). In places around the world like Moctum, where there are no social services to assist people with intellectual disabilities to live self-determined lives, the family becomes the primary “causal agent.” Turnbull and Turnbull (2001) point out that even in the United States when individuals with significant cognitive disabilities are unable to control the decisions in their lives without assistance, that assistance should come from trusted allies, those who have the most committed emotional relationship with the individual with a disability (e.g., parents, siblings, other family members, friends, and service providers). The implication in these studies is that the ideal situation in the United States is for the individual to control the decisions in his life, and the purpose of self-determination is to help him come as close as possible to this ideal. However, in Moctum the ideal situation for everyone, regardless of ability or limitation, was to belong to a family that served as the primary causal agent in their lives. Indeed, as I described, Juan was allowed (or forced) to lead a fully independent, self-determined life, and this was seen as tragic. The fact that he had a disability or that he was treated as a nonperson raised no concern among the people of Moctum. Given the rapid increase of culturally and linguistically diverse populations in the United States, for instance, this case study has important implications for service delivery. Transnational migrants, like those coming from Moctum to the United States, sustain simultaneous social relations, linking communities of origin and settlement (Adler, 2000; Appadurai, 1991; Cohen, 2001; Kearney, 1995; Kral, 2004). They do not leave their culture behind. To provide effective support services to transnational migrants from communities like Moctum, service providers should focus on family supports first, which will improve the individual supports. A recommended practice for working with migrant children who have a disability should be to focus on family- or group-oriented interventions rather than individual-oriented programs. We should ask, “What can be done to help this family support their relative with a disability?” In fact, this philosophy is beginning to gain recognition as several in the field of transition have recently recognized the role culture


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plays in transition success for individuals with disabilities and their families (Blacher, 2001; Frankland, Turnbull, Wehmeyer, & Blackmountain, 2004; Landmark & Zhang, 2006; Syzmanski, 1994; Turnbull & Turnbull, 2001; Zhang, 2006). Blacher (2001), in particular, notes that cultural values based in “familism” (e.g., interdependence among family members lending support) and religion may influence the meaning of transition success (p. 182). In summary, this case study among the Mixe of Moctum supports the movement in disability services to recognize the importance of the family to intervention success among Mexican and other Hispanic populations. To effectively support individuals from culturally diverse backgrounds, services must be funneled through the family.

NOTE 1. Pseudonyms are used throughout this chapter for every Mixe respondent.

REFERENCES Adler, R. H. (2000). Human agency in international migration: The maintenance of transnational social fields by Yucatecan migrants in a southwestern city. Mexican Studies, 16, 165–187. Albrecht, G. L., & Verbrugge, L. M. (2000). The global emergence of disability. In G. L. Albrecht, R. Fitzpatrick, & S .C. Scrimshaw (Eds.), Handbook of social studies in health and medicine (pp. 101–132). London: Sage. Appadurai, A. (1991). Global ethnoscapes: Notes and queries for a transnational anthropology. In R. G. Fox (Ed.), Recapturing anthropology: Working in the present (pp. 199–210). Santa Fe, NM: School of American Research Press. Beals, R. L. (1945). Ethnology of the western Mixe. Berkeley: University of California Press. Bernal Alcántara, J. A. (1991). El Camino de Añukojm—Totontepec y los Selesianos. Totontepec, Oaxaca: Sociedad Cultural Totontepecana Añukojm. Bernal Alcántara, J. A., & Ortega Rivera, N. (2003). Mook Jyööjtsykin Ax Jö/n Ayuuk Jayu Di Izada/El ciclo de vida del maíz según los Mixes. Oaxaca: Fondo Editorial, IEEPO. Blacher, J. (2001). Transition to adulthood: Mental retardation, families, and culture. American Journal on Mental Retardation, 106, 173–188. Bourdieu, P. (1986). The forms of capital. In J. G. Richardson (Ed.), Handbook of theory and research for the sociology of education (pp. 241–258). Westport, CT.: Greenwood. Cohen, J. H. (2001). The Shan-Dany museum: Community economics and cultural traditions in a rural Mexican village. Human Organization, 60, 370–380. Cohen, J. H. (2002). Migration and “stay at homes” in rural Oaxaca, Mexico: Local expression of global outcomes. Urban Anthropology, 31, 231–259. Cohen, J. H. (2004). The culture of migration in southern Mexico. Austin: University of Texas Press. Coleman, J. S. (1988). Social capital in the creation of human capital. American Journal of Sociology, 94, S95–S121. DIGEPO. (1999). Oaxaca, indicadores socioeconomicos indice y grado en marginación por localidad (1995) [Oaxaca, socioeconomic index and degree of marginalization

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by locality]. Oaxaca: La Dirección General de Población de Oaxaca y el Consejo Nacional de Población. Fortes, M. (1987). Religion, morality and the person: Essays on Tallensi religion. Cambridge: Cambridge University Press. Frankland, C. H., Turnbull, A. P., Wehmeyer, M. L., & Blackmountain, L. (2004). An exploration of the self-determination construct and disability as it relates to Diné (Navajo) culture. Education and Training in Developmental Disabilities, 39, 191–205. Grimes, K. M. (1998). Crossing borders: Changing social identities in southern Mexico. Tucson: University of Arizona Press. Gotto, G. S. IV. (2007). Social personhood and disability among the Mixe of San Marcos Moctum and Totontepec Villa de Morelos in Oaxaca, Mexico. Ph.D. dissertation, University of Kansas. ProQuest Digital Dissertations database (no. AAT 3261041). Higgins, M. J., & Coen, T. L. (2000). Streets, bedrooms, and patios: The ordinariness of diversity in urban Oaxaca. Austin: University of Texas Press. INEGI. (2001). XII Censo general de población y vivienda 2000 [XII General census of population and housing, 2000]. Aguascalientes, Mexico: Author. Ingstad, B., & Whyte, S. R. (Eds.). (1995). Disability and culture. Berkeley: University of California Press. Janzen, J. M. (2002). The social fabric of health: An introduction to medical anthropology. Boston: McGraw-Hill. Kearney, M. (1995). The effects of transnational culture, economy, and migration on Mixtec identity in Oaxacalifornia. In M. P. Smith & J. R. Feagin (Eds.), The bubbling cauldron: Race, ethnicity, and the urban crisis (pp. 226–243). Minneapolis: University of Minnesota Press. Kral, K. K. (2004). Women, kinship, and transnationalism in the Mexican borderlands: A case study of Chihuahua, Mexico. Ph.D. dissertation, University of Kansas. ProQuest Digital Dissertations database (no. AAT 3153185). Kuroda, E. (1984). Under Mt. Zempoaltepetl: Highland Mixe society and ritual. Osaka, Japan: National Museum of Ethnology. Landmark, L. J., & Zhang, D. (2006). Parent practices in facilitating self-determination skills: The influences of culture, socioeconomic status, and children’s special education status. TASH Connections, 32(5/6). Retrieved August 6, 2008, from www. tash.org/express/06mayjun/landmark.htm. Lin, N. (1999). Building a network theory of social capital. Connections, 22, 28–51. Lipp, F. J. (1991). The Mixe of Oaxaca: Religion, ritual, and healing. Austin: University of Texas Press. LiPuma, E. (1998). Modernity and forms of personhood in Melanesia. In M. Lambek & A. Strathern (Eds.), Bodies and persons: Comparative perspectives from Africa and Melanesia (pp. 53–79). Cambridge: Cambridge University Press. Luborsky, M. R. (1994). The cultural adversity of physical disability: Erosion of full adult personhood. Journal of Aging Studies, 8, 239–253. Marshall, C. A., Gotto, G. S., & Bernal Alcántara, J. A. (1998). Vecinos y [Neighbors and] rehabilitation (Phase III): Assessing the needs and resources of indigenous people with disabilities in the Sierra Mixe. Flagstaff, AZ: American Indian Rehabilitation Research and Training Center, Institute for Human Development, Northern Arizona University. Marshall, M. (1996). Problematizing impairment: Cultural competence in the Carolines. Ethnology, 35, 249–264. Morgan, L. M. (1996). Fetal relationality in feminist philosophy: An anthropological critique. Hypatia, 11, 47–71.


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Murphy, A. D., & Stepick, A. (1991). Social inequality in Oaxaca: A history of resistance and change. Philadelphia: Temple University Press. Nahmad Sitton, S. (1965). Los Mixes [The Mixe]. Volume 9. Mexico: Memorias del INI. Nicolaisen, I. (1995). Persons and nonpersons: Disability and personhood among the Punan Bah of central Borneo. In B. Ingstad & S.R. Whyte (Eds.), Disability and culture (pp. 38–55). Berkeley: University of California Press. Pollock, D. (1996). Personhood and illness among the Kulina. Medical Anthropology Quarterly, 10, 319–341. Putnam, R. D. (2000). Bowling alone: The collapse and revival of American community. New York: Simon & Schuster. Romer, M. (1982). Comunidad, migración y desarrollo: El caso de los Mixes de Totontepec [Community, migration, and development: The case of the Mixe in Totontepec]. Mexico: Instituto Nacional Indigenista. Snyder, K. A. (2002). Modern cows and exotic trees: Identity, personhood, and exchange among the Iraqw of Tanzania. Ethnology, 41, 155–173. Strathern, M. (1988). The gender of the gift: Problems with women and problems with society in Melanesia. Berkeley: University of California Press. Syzmanski, E. M. (1994). Transition: Life-span and life-span considerations for empowerment. Exceptional Children, 60, 402–410. Turnbull, A., & Turnbull, R. (2001). Self-determination for individuals with significant cognitive disabilities and their families. Journal of the Association for Persons with Severe Handicaps, 26, 56–62. Turner, B. S. (2001). Disability and the sociology of the body. In G. L. Albrecht, K. D. Seelman, & M. Bury (Eds.), Handbook of disability studies (pp. 252–266). Thousand Oaks, CA: Sage. Wehmeyer, M. L. (1998). Self-determination and individuals with significant disabilities: Examining meanings and misinterpretations. Journal of the Association for Persons with Severe Handicaps, 23, 5–16. Whyte, S. R. (1995). Disability between discourse and experience. In B. Ingstad & S. R. Whyte (Eds.), Disability and culture (pp. 267–291). Berkeley: University of California Press. Zhang, D. (2006). Parent practices in facilitating self-determination skills: The influences of culture, socioeconomic status, and children’s special education status. Research and Practice for Persons with Severe Disabilities, 30, 154–162.


CHAPTER 16

Sharing My Strengths and Winning against Obesity Michelle Pieper

M

y name is Michelle and I have a Certificate 3 in Indigenous Primary Health Care, and am studying for a diploma in Mental Health. I was born in a town called Ipswich and raised in a white man’s world, as mum was married to a white man, my father. Growing up was quite confusing, as I would visit my father’s side of the family—being someone I wasn’t—and then we would visit my mother’s side of the family, which is the Indigenous side and that was where I was more at home. My grandmother would tell us stories and there would be kids running around everywhere, elders drinking tea and playing cards all night. The year I turned 12, mum and dad split up and we went to live with my grandmother. There were three families living in the one house with no electricity and no hot water. They would boil water in 44-gallon drums to have hot water for bath times and we would cook our dinner under the stars. My grandmother was born under a tree on a mission called Purga. Our tribal name is Wakka Wakka. I remember the stories grandma used to tell us around the fire or when it was bedtime of how she was a part of the stolen generation and how she made her way back home again. Being very medically minded must run in the family, as my grandmother was a psychiatric nurse, as was my mother and her brother. We had gotten to know a lot of people with disabilities and a lot of careers of people with disabilities; some became close friends to us. As time went on I wanted to become a nurse, so I studied biology and science; I had problems at home and that’s when I met my daughter Brooke’s father. I dropped out of school and became pregnant with my daughter by the time I was 18. A few years went by, and I met my son’s father and I

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became pregnant with Ricky; when he was born he was diagnosed with a terminal heart disease (hypoplastic left heart syndrome). They gave us four to six weeks for him to live, but time went on and he didn’t want to go—despite his visits in and out of hospital or the around-theclock medication for high blood pressure. He was one sick little boy. Then one day we took him to the hospital for a check-up and they said his heart was working better; all they had to do was fix a few arteries. When he was six months old he had his first heart surgery; we spent six weeks in hospital and he became better. While all this was happening, mum was going through some tests of her own. We later found out that she was diagnosed with cervical cancer. I told her to move in with me so I could take care of her and Ricky at the same time, as well as look after my daughter. Mum had her operation and we found out that her cancer was too far advanced to do anything about, so I had the Blue Nurses [home health care nurses] caring for mum. It got so busy for them they asked if I could do their job so they could cut back on visits. So here I was dressing mum’s wounds and doing the job of a Blue Nurse, as well looking after my house and my children. Ricky then suddenly started to have seizures every day—sometimes a few times a day; we discovered more problems with his heart. I took him back to the docs and they found additional narrow arteries so back into the hospital again. Ricky needed more heart surgery. On top of all this, his tonsils, adenoids, mouth, and airways were underdeveloped; he had to have all his nasal passage widened to relieve his sleep apnea. Time went on and Ricky became better, and my grandmother and mother passed away seven months apart from each other. I lost contact with most of my family; I was losing all my loved ones. I couldn’t cope. I lost the house I was living in, and we were forced into a caravan park; there my son was abducted. Thankfully I got him back safely, but I took him back to the hospital to get him checked out—everything was fine, but trouble was all over the park. Then one day I realized that all I had left were my children. I took a look at myself and never once found out who I was. All my life I was overweight, and being a kid that was fat is torture. I got teased badly at school. I had enough and I started to do something about it. Then I met this social worker, Rosalind Muller. She had gotten this Indigenous women’s group together and I started to go—to help get through all my trauma. With the support of my fellow group members, I was into a house (from the caravan park), studying, and had lost a great deal of weight. I started out a size 24 to 26 in clothing; I am now down to a size 14 and I couldn’t be any happier for it. In the past six months I discovered I had cancer cells that had to be removed. I was just lucky that I got to mine in time. Coping with these hurdles has only made me a stronger Indigenous woman, and I would like to thank a special lady, Lauraine Barlow, for giving me this opportunity to share my strengths with other Indigenous women of the world.

CHAPTER 17

The Discursive Construction and Invalidation of Disability Stephen Lee Hodgkins and Sid Baility

W

ithin the United Kingdom and other countries around the world, disability has been institutionalized and industrialized and is governed by specific and general legislation and social policy. The institutions and industries associated with disability attract billions of pounds in donations and provide a significant workforce across a wide range of professions as well as academic, arts, sports, cultural, and activist movements. Although a recent increase in activism and awareness has demanded greater investment in and attention to disabled peoples’ participation as citizens, defining disability remains problematic and contradictory across contexts. This chapter examines the way disability and disabled people are represented in talk and text (i.e., discursive construction). Focusing on recent and historical texts relating to policy, theory, activism, disclosure, and identity issues, the naturalization and invalidation of the disabled body is explored and critiqued. Rather than accepting disability as a fixed entity located within the body and mind of individuals, we argue that it is a discursive object and its construction is linked to historical, social, and political structures. It is the intention of this chapter to identify and critique disabling practices and structures that reject and oppress the diverse body. Even though there has been a recent interest and increase in the analysis of discourse within disability studies, an ideology of the normative and able body continues to influence disability identity (Goodley & Lawthom, 2006; Thomas, 2007). In many ways, critical disability studies has been stifled by the dominant view of the disabled body as a natural tragedy, rather than as a matter of political oppression and human diversity. Materialist and Marxist perspectives of disability studies, even though they are opposing mainstream

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viewpoints, have also appeared reluctant to study contemporary discourse about disability. This reluctance in part relates to much broader contested issues concerning the implications of relativism and social constructionism and the challenges this poses for the radicalization of a social movement. Specifically, the mobilization of people toward action is perhaps more effectively achieved if their collective identity is easily shared and defined. Research and theoretical work that appears to discredit a disability identity can be easily misinterpreted as denying the inequality facing this group and therefore presents difficulties for the development of a disability movement. Although it is helpful to critique knowledge that legitimates the able body, this type of critique also risks the implication that disability is merely a constructed version of reality that thus does not exist. However, the position of this inquiry is not to deny disability but to reveal its relativity to the negativity and oppressive expressions that arise concerning the disabled body. It is not the intention of this chapter to render disability as a non-entity but to expose and be critical of constructions of the normative body that are used to produce and sustain the disabled body and, thus, an identity for disabled people. This chapter is concerned with the representation of disability as a negative and oppressive construct as well as the recognition of disabled people as part of a marginalized, discriminated, and excluded group and thus an important priority for social policy (see Barnes & Mercer 2004; Morris, 1992, 2004; Oliver, 1990; Swain, Finklestein, French, & Oliver, 1993). The chapter also reviews the ambiguous construction of disability and disabling processes in representations of meaning and knowing, and the difficulties posed for theorization of impairment, disability, and related matters (e.g., Corker & French, 1999; Corker & Shakespeare, 2002; Gabel & Peters, 2004). We unravel the processes that invalidate and produce disability as an anxiety of the normative body (see Hughes, 1999, 2000, 2002; Shildrick, 2005; Shildrick & Price 1996; Tremain, 2001).

ANALYTICAL APPROACH AND COMMENTARY The extracts presented in this chapter were taken from a body of data collected as part of a wider qualitative research partnership between the University of Northampton and the Disability Information Training Opportunity (DITO), a community disabled persons organization in East London. The text extracts come from a variety of sources, including the Oxford English Dictionary (OED) online versions (www.askoxford.com) of 2005 to reflect contemporary language; extracts from Hansard, the transcription system for recording of parliamentary debates in United Kingdom; transcriptions of three semi-structured discussion groups included disabled people, community workers, and senior managers; and images taken from publicity material of a community organization and a legislative and policy guidance handbook from local government of Tower Hamlets, East London. The discourse analytical approach of Potter and Wetherell (1987) was used to explore these texts. Language will be analysed to emphasize orientation toward action, consequence, and variation and to illuminate systematic

THE DISCURSIVE CONSTRUCTION AND INVALIDATION OF DISABILITY

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differences in descriptive accounts of disability, its function, and its construction. Talk and text mobilizes discursive constructions that facilitate access to the world and everyday events. Versions of meaning and ways of knowing the world are thus only established through talk and textual constructions (Potter, Wetherell, Gill, & Edwards, 1990). Discourse analysis should be understood as a method of critically reading texts, not for what they say but for what actions they orient, what constructions they sustain, and the meaning and knowledge that are accepted, or taken from them. The following sections present a variety of texts and analytical commentary that illustrate the discursive construction of disability and the positioning of disabled people as invalidated in talk and text.

“HIS DISABILITIES TO PERFORM HIS PROMISE” The meaning of disability that is inferred in contemporary texts is usually one of “want of ability . . . inability, incapacity, impotence” (OED). For example, the current UK legislative definition of disability as detailed by the Disability Discrimination Act (DDA) of 1995 defines disability as “a physical or mental impairment, which has a substantial and long-term adverse effect on a person’s ability to carry out normal day-to-day activities.” This is just one example that epitomizes how current UK regulatory practices both produce the disabled body as invalidated and value the normative able body. The DDA definition, although progressive in some ways, can be criticized for sustaining notions of ability and the able body as reliable and natural entities that constitute and qualify the human being. Rather, disability—or for that matter any construct of the broken, flawed, or diverse body—should be recognized as an intrinsic and significant way of being in the world (Moser, 2005). Indeed within biblical, ancient Grecian, and other historical texts, references and documentary evidence reveal the presence of the disabled body as long as there have been indictors of human activity. The oppression faced by disabled people also has a long history. In the Bible, Leviticus 21:16–24 states that those with impairments held the same status as “prostitutes” and thus were considered “unclean” (Stiker, 1999). Early benevolence is apparent with the arrangement of a “cripple” pension by Lysias 400 B.C.E at the council of Athens (Stiker, 1999). This alludes to a long history of negativity that is intrinsic to being. Therefore, a critique of disability is as much about the misrepresentation of the body as it is about the structure and administration of power that regulates and maintains order within human communities. The impermanence of the definitions and identity of disabled people is revealed by the observation that disability has not always located itself on the body but also holds status within a legal discourse. Government bodies and the regulation of resources require a definition and identity marker of disability that can determine and qualify welfare benefit payments. These are regulatory actions deemed appropriate so as to ensure deserving beneficiaries. A question therefore arises regarding the extent to which the identity of the physical body is related to a legal definition rather than one based on citizenship and whether one definition possesses greater power than the other.

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The linguistic form of disability is derived from “disable” (also dysable, dishable), and made up of the prefix “dis-,” expressing negation, and the suffix “-able,” referring to “that may.” Literally then, disability means “not, that may.” The earliest etymological reference of disability cited in the OED comes from Lupton’s 1580 book Siuqila, too good to be true. It is a piece of prose fiction, or utopian satire, portraying in some detail a fictitious society. From the preface, it explains that it is a dialogue between a character “Siuqila, an honest man who lived a good life but was weary of the wickness of his country and so went in search of a better land and people who were more agreeable to his affection” (pp. 138–139) and Omen from Mauqsun, a country of wonderful charity. Siuqila: What if he should be so hard hearted that he would not grant him his reasonable request? Omen: Then the party that promised must bring sufficient witnesses to the judge of his loss as hindrances, as of his disabilities to perform his promise, since he promised it: whereupon the judge will take order therein as he thinks good. (Lupton, 1580, pp. 138–139)1

The narrative is concerned with good conduct and trust relating to matters of trade and business. Although this version of disability appears to relate to a sense of inability, which differs from current meaning, there is a similarity and discursive resonance. There is implication of a contract or agreement to fulfill, but that this is prevented in some way by a restrictive element (a “hindrance” of “disabilities” to carry out “his promise”). The location of responsibility or source of disability is alluded to as belonging to a human agent, at least partially. Alternative meanings from the OED focus on legal and moral incapacity, which this extract infers, but this is easily translated as incapacity of the body and mind, too. This meaning is concerned with capacity or action, regardless of its source, and there is negative implication if the desired outcome is prevented. Self-control and autonomy are at risk of dysfunction, and this is inferred as being problematic. Further, it is inferred as being disruptive of that which is deemed to be appropriate conduct. Of great importance to disability and the management of body dysfunction are the practices of rehabilitation. For disability, rehabilitation is not necessarily a useful vehicle for participation and inclusion. Indeed, rehabilitation could be considered to be an exclusionary technology because it validates the normative body and determines a restorative health trajectory toward which the disabled body is projected. Rehabilitation infers “restoration (of a person with a disability, a criminal, etc.) to some degree of normal life by appropriate training” (OED). It is about marking difference within the confines of administrative categories. Rehabilitate contains “re” (of once more; afresh, anew and back; with return to a previous state) and “habilitate” (to endow with ability or capacity and to qualify oneself for office). Further, habil is derivative of able and ability and relates to habit in linguistic structure. Rehabilitation can be taken to describe literally those practices that work to repair and return something broken to a previous habit, and one that can be associated with ability and being able, of which typical and current meaning promulgates as valuable.


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In 1919, the Royal Association for Disability and Rehabilitation (RADAR) was set up and by 1936 had initiated 40 orthopedics hospitals and clinics. This was in response to the growing need to address the “crippled child” and “wounded war veterans,” and more generally respond with greater medical precision to accidents and industrial injuries. For almost 100 years prior to this, orthopedics and rehabilitation medicine had been developing, but often offering inconsistent surgical and care treatments (Borsay, 2005). Although people with congenital impairments have often been subjected to harsh orthopedics and medial regimes, restoring the war wounded provided a significant platform for the development of rehabilitation and established this link to employment. The OED cites an etymological reference to rehabilitation in 1940 from the UK parliamentary record Hansard: There is one aspect of the healing of the wounded—which I should like to mention, it is the secret of the maximum cure possible for the patient. It is the process known as rehabilitation. It is not sufficient that the wound should be healed; the wounded part of the patient must be enabled to function again so that he may once more play his part in society as a worker . . . I have appointed an advisor on rehabilitation. (M. J. MacDonald in Hansard HC, October 17, 1867–1940, as cited in OED)

This view is totalizing by implication as there is no midway or diversity of position. Healing is determined to be partial if a return to worker status does not follow. Rehabilitation is professionalized in this statement and appointed power by the way it is deemed to be offering a potential twofold solution of both state governance and normative body repair. However, rehabilitation services historically did not develop evenly due to the complexities, conceptual spaces, and geographical distances between established specialties (i.e., medicine, physiotherapy, psychiatry). As a result, disabled people often did not receive services or remained incarcerated in long-stay hospitals. Furthermore, disabled people with deteriorating conditions were excluded from rehabilitation due to the understanding that they were unlikely to benefit from such services. If organized differently, however, services may have enabled personal autonomy rather than rendering their bodies as docile and referenced against a normative construct (Borsay, 2005). The 500-year-old textual reference to disability from Lupton’s (1580) work is of interest to consider in relation to current definitions. Today, mainstream representation of disability locates it on the body and within the human agent. Although recent activism resists this definition, disability is historically rooted in meanings that infer dysfunction, defiance, and disruption of capacity to act in a particular way and fulfill demands and responsibility. The shift in agency from legal obligation to one embodied and owned by the human subject can be perhaps attributed to the conditions that have contributed to the development of the citizen as a moral participant in civil living arrangements. As society has recognized and developed its workforce, medicine and positive health ideology have revealed the potential for the regulation of economically able bodies. The legal capacity of agents and business matters can be seen, therefore, as contributing much to current

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knowledge concerning disability through the manner in which institutions of work, medicine, charity, and welfare have been organized within economic and administrative domains. These economic and administrative domains value and favor the normal and rational citizen and her able body. Although, the discourses of disability might historically appear to describe the failings of the body, they have also promoted the value of actions that contain competence, contribution, and individual independence.

INVESTING IN INDEPENDENT LIVING To counter the dependency and incarceration associated with impairment, disability activists have asserted an independent living approach to social policy. This has achieved a heightened prominence of disabled people and is as much about future inclusion as it is about previous and ongoing exclusion. More specifically, it proclaims and details a new order for an inclusionary lifestyle of the impaired body and makes significant challenge of recent and distant histories that have incarcerated and positioned disability as an ultimately negative and undesirable way of being. In this way, the foundations of independent living are based on three fundamental ideas: 1. the human and civil rights of disabled people are denied; 2. mainstream reaction to impairment is inherently negative and fails to account for and accommodate impairment, which in turn undermines these rights; and 3. this need not be so, and is wrong because impairment does not have to be the primary defining feature of life if appropriately accounted for and responded to. (Morris, 1992, 2004) The Independent Living Movement details the needs and requirements of disabled people that are necessary to achieve parity with their able-bodied peers in terms of accessibility and equality regarding human and civil rights. These needs include achieving accessibility in all areas of the everyday— environment, transport systems, information, housing, education, employment, provision of equipment, technical aids, personal assistance, self-advocacy (through advocacy, counseling, and peer support), and economy (Morris, 1992, 2004). The impact of the movement across strategy, policy, and equality initiatives is huge, yet current provision in the United Kingdom continues to fail disabled people (Disability Rights Commission, 2007). Notions of civic participation have little meaning for citizens with impairments as they remain excluded and ostracized. Despite this activism, disability and impairment remain naturalized as a flawed characteristic of the body. Thus, the ethical responsibility to accommodate them is negated (see Tremain, 2001). Nevertheless, the movement has asserted a massive discursive influence and has reformulated the construction of disability as both a personal and social issue, undermining negative assumptions and reactions and charging the issue of impairment with much political capital (Barnes, 2002). Within numerous UK government documents and policies concerning disability


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(e.g., Department of Health [DoH], 2001; Prime Minister’s Strategy Unit, 2005), there are terminologies of choice, control, access, and assistance, each of which can be traced to the early campaigns of the Independent Living Movement, that both redefined independence and vehemently challenged dependency. The discourse of independent living has achieved a great deal. The UK Office for Disability Issues is carefully considering reform of social care provision along the lines of the ideologies espoused by the movement, suggesting that future support provision for disabled people may facilitate independence and citizenship. The following quotation comes from the Hansard transcripts of House of Lords’ second reading of the private members bill, the Disabled Persons (Independent Living) Bill of 2006. The bill was presented by Lord Ashley of Stoke during 2006 and debated on December 15, 2006. In 2008, the bill was awaiting further debate. Although the bill poses much needed reform for social and community care provision, its success is not necessarily dependent on how it will attend to equality and inclusion issues for disabled people, but rather how it might assist government in its regulation of disabled people and associated expenditure. The organization of modern Western society is in many ways dependent on individualism and the processes that establish and define contractual arrangements with its citizenship (Alaszewski, Walsh, Manthorpe, & Harrison, 1997). Moreover, government and capitalist enterprise promulgate discourses that represent society as self-sustaining (Weber, 1927). Central to both these areas is the language of economy that asserts a regulatory determinism over state governance matters. I hope that Gordon Brown and other Members of both Houses will recognize the important economic benefits of investing in independent living. As people become more independent and return to work, earning from their employment and paying taxes, savings will be made in the social security budget. There will also be a big reduction in the use of health and social services as people become active and return to work. Vitally, the net costs incurred under the Bill will be far less than people first assumed when they saw these demands. (Lord Ashley of Stoke, Hansard, December 15, 2006, column 1794)

The economic case for investment in independent living is based on the prospect of it leading to employment and activity that in turn will benefit tax income and savings in health and social care, and welfare expenditure. Employment is presented as a key assumption of increased independence and central to both budget and personhood. Thus, the independence of disabled people is constructed as being of benefit to the economy through the enhanced performance of the citizen as an active and engaged consumer. This is functional to the able ideology of effective contribution and production by individuals as compliant citizens. This assumption infers that competence enhancement is necessary to realize these outcomes, rather than the adaptation or redefinition of jobs and the workplace to be more inclusive of disabled people. The benefits of investment in independent living are constructed as an individualistic discourse that, although orientating the system toward potential improvements for disabled

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people, are nevertheless strengthening the dominance of an economic and normative able-bodied discourse.

IT IS SOCIETY THAT DISABLES The social model of disability that was initially articulated by the Union of Physically Impaired against Segregation (UPIAS, 1976) has had a tremendous impact on meaning concerning disability. It has very much shifted disabling agency from that of the individual’s body to the societal barriers that exclude disabled people from participation in everyday living. The defining statement of the social model of disability asserted, “it is society that disables physically impaired people” (UPIAS, 1976, p. 14). Representing a massive shift in the conceptualization of disability, the social model has been influential in bringing about much social policy reform and antidisability discrimination legislation. In its earliest form, produced over 30 years ago, the social model was initiated to signify the oppression faced by people with physical impairments. However, it has a much broader scope today and is taken by those within the disability movement, industries, and other agencies to relate to a broad range of impairments and conditions. The social model raises concerns regarding definitions of disability that produce it as a static state and able to undermine the diversity of the body (Oliver, 1990). More recently, the social model of disability has been criticized for its flaws as a theoretical model to account for issues of pain and impairment and how it sustains the othering and naturalization of disabled people as extra to the ordinary construct of the body. Indeed, Shakespeare (2006) asserted that “the social model is wrong” (p. 53). Although this conclusion caused controversy within activist and academic circles (see Sheldon, Traustadóttir, Beresford, Boxall, & Oliver, 2007) because of its potential to be interpreted as a critique of the disability movement, this line of criticism is not uncommon within disability studies (for a review see Thomas, 2004; Vehmas, 2007). However, shortly after Shakespeare’s (2006) book was published and launched, Lord Ashley of Stoke asked the government in the House of Lords, “how soon can we have a new definition that is comprehensive and based on the social model of disability?” (Hansard, HL, Oct 10, 2006). The simultaneous production of these multiple and perhaps contradictory versions of disability—be it calling for administrative regulation by definition of the social model or by disputing its theoretical and methodological meaning—represents a concerning dislocation between policy and academia. The issue here is not focused on the appropriateness of these statements but on the observation of them as existent at similar times but at differing sites of regulatory power. The contradiction demonstrates the multiple understandings of disability and although both question established meaning, the invested interests are variable in terms of the immediacy for social reform and the accuracy of knowledge. This dislocation between leading academics and policy makers is problematic in the way it contributes to the isolation of understandings concerning disability.


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Although, social policy typically lags behind critical thinking in academia, some responsibility must rest with the trend within academic work to distance itself from a political agenda and thus impact on the potential development of inclusion and equality policies that are crucial to disabled people.

RAISING OR BREAKING BARRIERS Central to the social model of disability is the distinction made between impairment and disability. For UPIAS (1976), disability is defined as the socially imposed restrictions (i.e., barriers created by inaccessible social environments) that restrict and exclude people with impairments from participation in society. Impairment, on the other hand, is taken to refer to physical or psychological inability. Although this distinction remains relative to the conceptualization of a normative or typically able body, the social model relocates disability away from the individual to that of social structure. Disability is viewed as the restricted participation and social disadvantage a citizen faces as a result of an inaccessible and unaccommodating environment and not that of the flawed functionality of an individual’s body. This position is persuasive in its relocation of disabling agency (i.e., that which causes disability) but is contentious and problematic in its articulation. Specifically, there is a dominance of individualism and qualities deemed as intrinsically human in meaning and constructions of disability that have been historically conceptualized as relative to the normative body. In this way, discursive constructions of the social model of disability use “barriers” as a signifier of exclusion and furthermore do so to attribute the responsibility for this to be changed by reorganization of civic society. However, these vary in relation to the discursive function under discussion. To demonstrate this, and how the method of discourse analysis may be drawn on to consider the accompanying imagery of texts, two images are presented, in Figures 17.1 and 17.2. These images are deemed relevant for inclusion because of the way they depict discursive variation in presentations of the barrier metaphor and can be read as relating to differing actions being oriented, too. Both images depict the barrier metaphor. Figure 17.1, which fronts an advice and guidance handbook for Tower Hamlets council managers about their responsibilities under the Disability Discrimination Act 1995, shows a car park barrier emblazoned with the text “discrimination” in the process of being raised. Figure 17.2, the logo of the Disability Advocacy Network, a local organization of disabled people in Tower Hamlets, presents its name as an acronym DAN, with the “A” for advocacy breaking through a cartoon depiction of a barrier and is printed much larger than the “D” and “N.” Although both images draw on the social model of disability and use the barrier construct, they do so to achieve different ends. Both imply that the location of disability is societal or structural, and both infer that change is achievable through the removal of barriers. The first, however, is shown and named as “discrimination” and is being raised, whereas the second implies that barriers are to be broken. The blurred trail lines of the moving barrier in the first image imply an action. “Our responsibilities” on the council handbook

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Figure 17.1. DDA 1995: Our Responsibilities. Advice and Guidance Handbook for London Borough of Tower Hamlets Managers. Produced by the Corporate Equalities Service (2000).

Figure 17.2. Disability Advocacy Network (DAN) Logo. Since 2000, used on stationery and publicity information. Disabled persons organization in Tower Hamlets, east London.


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is in a handwritten script font, perhaps to construct a sense of engagement and inform its intended readership, namely Local Authority service managers, that the DDA has implications for them. This is contrasted with the large “A” for advocacy that is constructed as an agent of change through a different form of action, collective struggle, and the breaking down of barriers. Discourse analysis has not typically engaged analytically with the “imagetext relation” as has been considered in other work for many decades (e.g., Barthes, 1957; Kress & Van Leeuwan, 1996). Nevertheless, a discourse analytical approach toward image-text representations is useful when considering the construction of phenomena. These images have been included to demonstrate variation in constructions of the “barrier” metaphor. The implication is that those committed to promoting disability equality should be critically vigilant of mainstream bodies when they assimilate and adopt radical activist discourses (i.e., as the independent living and the social model). Although they might seem to be adopting approaches that benefit disabled people, the original meaning is likely to be rhetorically distorted and colonized by those bodies in line with their own regulatory interests (see Oliver, 2004).

“I USE MY DISABILITY, I TRY AND MAKE THE MOST OF IT” The disclosure of disability as possessing positive attributes is incongruent to its dominant meaning. The “dis-” prefix expresses negation or reversal of state and thus applied to “-ability” poses dilemmas. To make, use, and/ or attribute the possible benefits that might arise from a negative state is linguistically problematic and has potential to be discredited as nonsensical or at least discursively defiant. Indeed, current meanings and representations of the disability category can be seen as situated within a plethora of social, cultural, historical, and political institutions that produce and sustain its embodiment as undesirable and an invalid way of being (Shildrick, 2005). In this way, the positioning and identification as a disabled person at the moment of disclosure can be problematic for it dislocates an association with the normative and portrays a subjectivity of the other. The following quotation and commentary explores some of the tensions and contestations of disability disclosure as well as complexities associated with narratives and accounts that attempt a reconfiguration of the disabled subjectivity as exclusively invalid. X: I was gonna say that I use my disability, I try and make the most of it if that makes much sense. I know that it’s helped my daughter’s friend to go back to college and she’s studying law and her mum’s been round and said “Oh thank you so much” and (she’s) actually said to me . . . it’s because of you, cos she’s known me for like about 14 years cos’ it’s my daughter’s best school friend and she’s seen how I used to, when I used to be really bad in and out of hospital, in and out of hospital and all this and that, so I said to her what you trying to say? If I can do it you can do it sort of thing? But it’s helped her and I’ve got other friends who have gone and done things and they have said, they say like if X can do it anyone can do it anyone can do it. But I don’t think they mean it in a bad way when they say it you know and we have a laugh about it. So and that’s well I’ve done it with

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some of the clients in here. Can I say about that that client? [refers to monitoring questions asked as part of the voluntary advice work X does at the community project DITO] You know the client come in here last week and er she said when I asked her if she classes herself as disabled she said no—and I said “Can I ask why?” and she just went “oh no I’m no—I don’t wanna—no I’m not disabled” you know so I said “I’m dis.abled” she went oh I knew she was really shocked and she looked, she was looking on ehm the sheet of paper we had when we were doing that training and she saw that thing, “half a person” [refers to a disability awareness training course exercise that used resources from the Disability Rights Commission’s 2003 poster campaign “Is a disabled person only half a person?”] [R: oh yeah yeah yeah] so I said to her “Oh I writ that” I said “I can’t believe that I done that” and she said “oh” she was reading it and by the time I’d finished with her she kept saying “I can’t believe you’re disabled—you’ve got arthritis” I said “I’ve had hip replacement” ’ she was just, mate she said “ change it and put that I class myself as disabled now” and that’s what you know it’s made a difference she, I said you’ll feel better your be more positive if you can look at it that way, I understand what you’re saying T cos you say, cos you see people worse than you I, I know where you’re coming from but I’ve always, I’ve never found it hard to say that I’m a disabled person cos I don’t feel that it’s anything for me to be ashamed of you know. T: No I’m not ashamed of it, I just think cos since I’ve been coming to DITO I see people a lot worse [X: a lot worse yeah] than me [X: yeah yeah I see what you’re saying] I know that I can’t walk but I can still see, [X: right yeah] if you took me eyes away I’d kill myself. Or I’d rather . . . X: You say that but you would cope [T: no I wouldn’t] you would have another disability [T: not with me eyes] but you would be amazed you would just on with your life because there are other people who, are worse than that. T: [I couldn’t I couldn’t not], not if anything happened to my eyes. X: [Yeah but you say that] cos you’s a fighter. HZ: [You’ve got your ears], you’ve got your ears [R: you’ve got your ears]. X: Yeah there’s always, you know what I mean. Even though you say that T you know God forbid you would still, you’d survive. T: I don’t mind my ear holes going I won’t hear my kids ask me for money. [X: Laughs]. (Hodgkins, 2003, DG1, p. 10 line 15–p. 11 line 26)2

The quotation shows a version of personal disclosure and acknowledgment of a disabled identity that positions a positive difference. Through this disclosure, a benefit can be achieved. This is corroborated by X by way of references to external witnesses, working them up as transformed beneficiaries of her disclosed disability (lines 2, 4, and 14). By doing so, however, another position becomes apparent, namely, that motivational agency can be achieved by comparison and reference to the achievements of those who do so despite their adversities. This is circular and dilemmatic in its depiction of disability as adverse as the speaker considers “but I don’t think they mean it in a bad way” (line 10). The account X asserts works to denounce shame and counteract the rejection of a disabled identity: it is an alternative positioning. This is referenced to the client (line 12) who is persuaded to change her disclosure through example. What is revealed the positives of disclosing or affiliating to a disabled identity, in contrast to its avoidance and thus negative accounts. This is further used to contest its denial and infers “shame” as the justification for


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nondisclosure, or for it being troublesome or “hard to say” (lines 25–26). Implicitly, X is acknowledging T’s position in that there can be people “worse” (line 25), but the account of a positive embraced disclosure ultimately deflects possible negatives associated with a disabled subject position. Not being disabled is warranted by reference to others being “a lot worse” (line 29), but is inferential of an ideological dilemma where impairments are constructed as existing along a continuum of undesirability. This implies a hierarchical ordering of capability and functionality that is referenced to the able body. Elsewhere, a “hierarchy of impairment” (referring to disability) is discussed as an interactive resource utilized to promulgate disablism among disabled people (Davis & Watson, 2001; Deal, 2003; Reeve, 2004). Such a way of inferring and constructing versions of meaning can be seen as referential to a discursive interactive theme, named here as the “dierarchy.” This is not a hierarchy in a typical sense, but is a discursive interactive resource that demands competence, in a bleak and condemning way, of that which is not normative and compliant. This is extremely dilemmatic, and furthermore nihilistic, because it maintains its discursive production as extraordinary, and thus, by recognition of what is worse, denotes what is deemed better. Several other discourse analytical features can be observed in the extract. The statement,“if you took me eyes away, I’d kill myself” (line 31) is an example of an “extreme case formulation” (Pomerantz, 1986). The final articulation (line 40) uses humor to deflect potential negative inferences by way of “prompt overlap” and “interruption” (Nofsinger, 1991; Schegloff, 1987) and a finalizing “disclaimer” (Hewitt & Stokes, 1975). Disclaimers are verbal devices deployed in advance of statements that may invoke obnoxious attributions to enable the speaker distance from negative connotations. The final utterance (line 40) effectively brings to an end this exchange with a semi-humorous retort that explicates disability, albeit a visual impairment, as stigmatizing and undesirable. Indeed, the articulation of “I’d kill myself” (line 31) resonates the dierarchy theme and draws on a dominant eugenic discourse. This discourse promotes a hopeless construct of disability as a difference, othered, and representative of a life not worth living. Although uttered and, thus, invalidating, this discourse is contested by X whose position is action-oriented, offering a reconfigured subjectivity wherein diverse bodies not only live but thrive. This extract is revealing of competing accounts of disability disclosure, demonstrating its potential benefits and the option of nondisclosure by way of the dierarchy theme. However, both approaches infer a dominant normative body. The latter is explicit in making visible and qualifying disability as undesirable. The former, despite producing a reconfiguration of this dominant disabled subjectivity, must do so cautiously against established versions of knowledge and the embedded materiality of modernity. The production of the alternative body challenges social order and implicates structures of governance as oppressive and requiring change.

CONCLUSION This chapter has examined the discursive construction of disability and disabled people in talk and text. Having explored a number of text extracts

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and images from a variety of sources, it has shown how the meaning of and knowledge about disability is discursively produced. We have shown how ideas and philosophies, such as the social model of disability and independent living movement, can be rhetorically distorted. The final extract explored issues of identity showing how accounts of disability are determined and constituted in talk not as an aspect of personal identity but rather as a process of positioning. Speakers’ orientations in conversational interaction become apparent as they disclose their versions of disability. The identity or position of disability appears to be based on elaborate discursive work that is employed during interactions that accept, reject, and account for the disabled position. In light of the extracts and analytical commentary presented in the previous sections, I draw this chapter to a close by sketching out a future direction for discourse analytical research and theorization of ethical benefit to the disability equality and diversity agenda. Disability language furthers meaning and knowledge, but disability knowledge and meaning is also manipulated through language. As Shildrick (2005) asserted, “there is no singular explanation [of disability], and no certainty, but only the disabled body in all its contingency and undecidability” (p. 768). Disability knowledge and meaning is not then to be taken as accurate reflections of the world or representative of its constitution. Rather, disability should be taken as an artifact of interaction, mobilized and ever reforming in discourse. In this way a distinct identity of disabled people is rendered inappropriate. What is revealed then are the disablist practices that invalidate disability and impairment. These practices are relational and interactive, action-oriented and constructed in and through discourse. The disabled body is oppressed through language and knowledge rather than being accepted and embraced, as it should be, as an intrinsic aspect of human diversity. Drawing on relativism, discourse theory, and disability studies, the discourse approach represents a new opportunity for cross-discipline dialogue that is both politically applicable and theoretically useful to guide disability research and thus influence related equality and diversity initiatives. A discursive constructionist stance considers knowledge to be not a reflection of the world but an artifact of interaction. Thus, this approach offers a perspective of the disabled body not as a permanent state but as a fluid representation produced through a multiplicity of histories, structures, and discourses. If the body is considered to be an artifact of knowledge interaction that over time absorbs language that serves the interests and actions of authoritative and regulatory collectives, then a discursive mode of disablism becomes apparent. Power issues perpetuate the othering and invalidation (Hughes, 2000) of disabled people. There is a “tyranny of perfection” (Glassner, 1992) and a notion of capacity to conduct and express autonomy. Disability has been done, over its long history, not just to those with impairments but to the detriment of all bodies as a denial or “anxiety” of being in the world (Shildrick, 2005). It could be argued that the very idea of disability is a reminder of the dead body and, as such, is repressed and repulsed. This negative representation has been sustained through language of the normative body and a discursive mode of disablism, multiple, transhistorical, ever absorbing, and interactional with mediums of knowledge that allude to the value of compliant bodies.


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Future research could document the discursive mode of disablism, through exploration of discrimination cases, “back-to-work” benefit assessments, and reporting of hate crime incidents. By examining everyday text records, such as interview transcripts, welfare benefit application forms, and policy documents, both the implicit and explicit examples of disablism could be identified and revealed. Although the discourse analytical approach is useful to develop critique, it is limited by its reliance on text. Combining critical disability discourse analyses with quantitative data may be a useful way to build greater understanding of disablism and its impact. It is necessary to recognize disablism as a significant issue and foster zero tolerance toward it. This requires vigilance and action to make active challenge at each and every moment it appears. So that all bodies are valued, their diverse relativity must be embraced and celebrated; when rejected, critical responses must be made. However, it needs to be remembered that this requires effort, commitment, and reflexivity, for often the normative is so dominant in its expression that it represses acknowledgment and acceptance of diversity, thus legitimating its oppression.

NOTES 1. The reference to disability presented here is the earliest etymological source detailed in the OED and is italicized in the extract. The additional text was taken from the original source. 2. Extract transcribed following conventions detailed by Jefferson (1985) to account for pauses, intonation, overlaps, and other conversational characteristics.

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Disability Rights Commission. (2007). Developing a social care system fit for the future. Stratford-upon-Avon: Author. Gabel, S., & Peters, S. (2004). Presage of a paradigm shift? Beyond the social model of disability toward resistance theories of disability. Disability & Society, 19(6), 571–596. Glassner, B. (1992). Bodies: The tyranny of perfection. Los Angeles: Lowell House. Goodley, D., & Lawthom, R. (Eds.). (2006). Disability and psychology: Critical introductions and reflections. Basingstoke: Palgrave Macmillan. Hewitt, J. P., & Stokes, R. (1975). Disclaimers. American Sociological Review, 92, 110–57. Hodgkins, S. L. (2003). Text transcription of audio recordings of three discussion groups (DG1, DG2 & DG3) held at DITO disability information training opportunity. 40–50 Southern Grove, London. Hughes, B. (1999). The constitution of impairment; modernity and the aesthetic of oppression. Disability & Society, 14, 155–172. Hughes, B. (2000). Medicine and the aesthetic invalidation of disabled people. Disability & Society, 15(4), 555–568. Hughes, B. (2002). Bauman’s strangers: Impairment and the invalidation of people in modern and post modern cultures. Disability & Society, 17(5), 571–584. Jefferson, G. (1985). An exercise in the transcription and analysis of laughter. In T. van Dijk (Ed.), Handbook of discourse analysis, vol 3. (pp. 25–34). London: Academic Press. Kress, G., & van Leeuwan, T. (1996) Discourse semiotics. In T. A. van Dijk (Ed.), Discourse as structure and process. Discourse studies: A multidisciplinary introduction, vol 1. (pp. 257–291). London: Sage. Lupton, T. (1580). Siuqila, too good to be true. Copy held at British Library Rare Books Section, London. Retrieved from Early English Books Online, /eebo. chadwyck.com. Morris, J. (1992). Independent lives: Community care and disabled people. London: Macmillan. Morris, J. (2004). Independent living and community care: A disempowering framework. Disability & Society, 19, 427–442. Moser, I. (2005). On becoming disabled and articulating alternatives: The multiple modes of ordering disability and their interferences. Cultural Studies, 19, 667–700. Nofsinger, R. E. (1991). Everyday conversation. London: Sage. Oliver, M. (1990). The politics of disablement. London: Macmillan. Oliver, M. (2004). If I had a hammer: The social model in action. In C. Barnes & G. Mercer (Eds.), Implementing the social model of disability: Theory and research (pp. 18–41). Leeds: Disability Press. Pomerantz, A. (1986). Extreme case formulations: A way of legitimating claims. Human Studies, 9, 219-–229. Potter, J., & Wetherell, M. (1987). Discourse and social psychology: Beyond attitudes and behaviour. London: Sage. Potter, J., Wetherell, M., Gill, R., & Edwards, D. (1990). Discourse: Noun, verb or social practice. Philosophical Psychology, 3, 205–217. Prime Minister’s Strategy Unit. (2005). Improving the life chances of disabled people. London: Stationery Office. Reeve, D. (2004). Psycho-emotional dimensions of disability and the social model. In C. Barnes & G. Mercer (Eds.), Implementing the social model of disability: Theory and Research (pp. 83–100). Leeds: Disability Press. Schegloff, E. A. (1987). Recycled turn beginnings: A precise repair mechanism in conversation’s turn-taking organization. In G. Button & J. R. E. Lee (Eds.), Talk and social organization. Clevedon: Multilingual Matters.


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CHAPTER 18

Shubharthis in India: Destigmatizing Schizophrenia, a Move toward Inclusion Anuradha Sovani

T

his chapter deals with a shift from the age-old perspective in the Indian subcontinent of looking at mental illness in general, and schizophrenia in particular, as a result of the wrath of God or possession by an evil force, to a perspective more aligned with modern medicine, which sees schizophrenia as a biopsychosocial malady. Developments over the past decade are traced to the point where the now-traditional medical model, the illness/custodial care perspective, is rapidly being replaced. Today, there is a greater emphasis on psychosocial interventions and ensuring family and social support for continued wellness, rehabilitation, and home care. Various trends in the Indian subcontinent over the past few years are reviewed, in terms of the mental health policy, the caregiver movement, and building up of associations and support groups for people with schizophrenia and their caregivers. Awarenessbuilding programs, and moves to empower caregivers and family members are reviewed, along with classic work done in India by leaders in the fields of psychiatry and psychology. People with schizophrenia have been newly dubbed, at least locally, the Shubharthis, “people on a path to wellness,” a terminology approved of by the then president of the World Schizophrenia Fellowship, Jim Crow, and the director of Mental Health, World Health Organization, Benedetto Saraceno (personal communications). This name reflects the fact that people with schizophrenia now move toward inclusion into the social mainstream. India has traditionally upheld an inclusive social framework, despite being maligned internationally for social barriers such as caste and creed. Blessed with the joint family structure, and a close-knit social milieu which offers support systems to the weak and disempowered, India is uniquely poised

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to spearhead an inclusive movement in the field of mental health. Although rapid urbanization and globalization is leading India toward nuclear families, the social and spiritual fabric of the society is nevertheless robust. Further, creativity and social responsibility has led many filmmakers, writers, and activists to create films, both in the local languages and in English, leading to more awareness about schizophrenia among the lay population. This chapter reviews all these efforts, shedding light on the methodology for inclusion of people with mental illness.

HISTORICAL PERSPECTIVE With its population of 1.2 billion people, India is a colorful mix of the most modern metropolitan cities, reflecting the impact of globalization on the country, and the least developed villages, with rampant illiteracy, poverty, and ignorance. Myths and misconceptions about mental illness abound. “Schizophrenia is a mental disorder characterized by loss of contact with reality (psychosis), hallucinations (usually, hearing voices), firmly held false beliefs (delusions), abnormal thinking, a restricted range of emotions (flattened affect), diminished motivation, and disturbed work and social functioning” (Bustillo, 2008). In India, the word schizophrenia would be a puzzle to most laypeople, and most aberrations in behavior would be attributed to the wrath of the gods (India has many deities), fruits of sins in the past life (rebirth being a prominent theme in Indian philosophy), or even possession by evil spirits and demons who need to be ostracized. India boasts state-of-the-art hospitals and training institutes in the field of mental health, with well-established and flourishing departments of psychiatry, psychology, social work, nursing, neurology, genetics, and radiology, all pursuing in-depth studies of schizophrenia, treating it as a biopsychosocial phenomenon. “Organized mental health care in India is truly a product of the last 50 years . . . before which there was no professional care, outside of families and the traditional systems of care” (Srinivasa Murthy, 2000). Given this history, India has made much progress, with many government initiatives in the field of mental health. The Mental Health Act (which replaced the Indian Lunacy Act of 1912) comprising 10 chapters and 98 sections, was drafted by Parliament in 1987, and came into effect in all the states of India by 1993. The government of India formulated the National Mental Health Program in 1982, and more recently the Persons with Disabilities Act of 1995. The various Mental Health Authorities were formalized for every state in the country; large multispecialty national institutes were established, such as the National Institute of Mental Health and Neurosciences (NIMHANS) in Bangalore, Karnataka; the Post Graduate Institute of Medical Research and Training (PGIMER) in Chandigarh; and the All India Institute of Medical Sciences (AIIMS) in New Delhi, the national capital. The Indian National Human Rights Commission (2000) took an active interest in the rights of the mentally ill in their report. Regional mental hospitals have existed for a long time in the country, providing long-term inpatient care for the chronically ill. Many of these hospitals

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were established during the British rule in India (e.g., the foundation stone for the one in Thane, Maharashtra, was laid as far back as 1899). Today, the nongovernmental sector is making waves in the field of mental health. Schizophrenia Research Foundation (SCARF) was established in Chennai, Tamil Nadu, in 1984; the Richmond Fellowship Society in Bangalore; and the Institute for Psychological Health in Thane, Maharashtrain, in 1990, among others. India has often been described as a country torn apart by differences based on social caste, a classification that segregates groups from each other by the circumstances of their birth. Socioeconomic status, too, contributes to divisive forces in society, with the very poor and deprived section of society coexisting with the extremely rich. Despite these huge and apparently insurmountable differences, India has traditionally had an inclusive social framework. The weak and less endowed have always been granted food, clothing, shelter, and protection under the umbrella of the family, without dubbing this help and support as “charity.” Most social groups in India boast a closeknit social milieu that offers support systems to the weak and disempowered. In any small village or township in India, most people know most others by name, and people with disabilities, the intellectually slow, as well as the old or the very young and vulnerable, are offered sanctuary in this country. Although rapid urbanization and globalization is creating a drift toward nuclear families, the social and spiritual fabric of the society is nevertheless robust. “It is now well established that the outcome of schizophrenia in developing countries, especially in India, is more favorable compared to that seen in the developed countries. . . . Cohesive family ties, a pastoral economy and a supportive environment are cited as the possible reasons” (Kulhara, 2000). The international pilot study of schizophrenia that was carried out by the World Health Organization in 1973, its follow-up in 1979, as well as later studies of international standing has echoed these findings. More work is required to identify the exact factors that seem to contribute to this relatively good outcome. Some of the relevant research is cited here, including work conducted in a University Grants Commission–funded study on the factors responsible for treatment-resistant schizophrenia, as against those which seem to contribute to good prognosis (Sovani, Thatte, & Deshpande, 1997).

The Changing Social Milieu in India With rapid economic and social change, India, particularly urban and metropolitan India, is going through a huge state of flux. Families are smaller, breaking down from joint to extended to nuclear family structures. There are more “double-income, no-kids” couples by choice, known popularly as “dinks.” Single-parent families too are on the rise, once again in urban and metropolitan areas, with a higher divorce rate; and also couples where one partner is living with and caring for the family within India, while the other works abroad and earns well for the family. Increasingly, in the cities, care of the children is handled by professional caregivers in day care centers for children and baby-sitting agencies, and less

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often by family members. It follows, logically, then, that when an illness like schizophrenia strikes in adolescence or early adulthood, there is no familial help at hand, and the “burden of care” falls on the parents, siblings, or spouse. Further, any illness that carries with it stigma and shame will be hidden from society, and this isolates these caregivers, ensuring that they will not take help from elsewhere (Provencher, 1996). Srinivasa Murthy (2000a) stated that educating families of people with schizophrenia has been occurring more by chance than by design. He also pointed out that the interaction between professional and family has to be continuous, dynamic, and rooted in the sociocultural beliefs and practices of that community.

MENTAL HEALTH IN INDIA: A DECADE OF CHANGE Concerted efforts to combat mental illness and promote mental health have begun in India just over a decade ago. The concept of promoting mental health through primary care settings was taken up in a planned manner around 1996. Primary care in India is itself a difficult proposition with a huge population to be served and a paucity of well-trained medical professionals. Outreach to remote areas of this seventh largest country in the world, and the second most populous, is often difficult due to geographical barriers and inaccessibility, poor infrastructure for medical services, and the economic inability and lack of paying power of these remote areas to sustain medical services. Another form in which psychiatric and paramedical services can be accessed by the mentally ill in India is through the psychiatry units of general hospitals, many of which are managed by the government or the municipality, thereby making their services affordable to the poor. Until 1905, all long-stay inpatient facilities in India, or “lunatic asylums” as they were then labeled, were under the additional charge of the Civil Surgeon. In the period between 1933 and 1947, when India gained independence, general hospital psychiatry grew rapidly. Most large hospitals boasted a multispecialty team with a psychiatrist, clinical psychologist, psychiatric social worker, psychiatric nurse, and other associated staff necessary for running an inpatient and outpatient department for the service of the mentally ill. The Mental Health Act, enforced from 1993, and the Persons with Disabilities Act of 1995 were landmark changes in the standards of care of the mentally ill. In an editorial, Huxley and Thornicroft (2003) spoke of social inclusion, social quality, and mental illness. Making an interesting distinction between shades of inclusion, they wrote that demos refers to the range of access rights that are offered by citizenship of a given nation-state, whereas ethnos refers to a shared cultural community rather than a national community, and to the shared values, identification, and sense of cohesion that are engendered by membership of particular social groups and communities. Thus, changing national laws, rules, and guidelines may make a significant change in the first aspect of inclusion, but not necessarily the second. This chapter attempts to outline how ethnos has been brought to play in several instances, in the Indian setting, through community involvement.


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In India recently there has been a strong move to promote inclusion through community mental health efforts, with involvement of the families of the mentally ill. Not only are concerted efforts made to educate them regarding the illness affecting their near and dear ones, organizations are formed to render them more empowered. The National Alliance on Mental Illness (NAMI), nongovernmental organizations (NGOs) in the field of mental health, including IPH (the Institute for Psychological Health) and SCARF, among others are working hard toward creating support groups for the affected families and also for people with mental illness themselves, conducting workshops for awareness building and cognitive retraining, vocational rehabilitation, activity centers, and sheltered workshops, among other activities. More conferences and scientific meetings are now focused on “softer” (implying psychosocial rather than medical) areas in the field of mental illness, such as rights of the mentally ill, caregiver training and empowerment, handling caregiver burnout, cognitive retraining of skills in people with schizophrenia, dealing with the stigma of mental illness, public awareness campaigns and attitudinal change toward the mentally ill, among others. More media coverage, both in the form of audiovisual programs and print, deals with the foregoing issues in this country. Rather than alienating and ostracizing people with mental illness, the focus is now on acceptance and inclusion. The picture is still fairly bleak, but change, although slow, seems to have begun. Corrigan (2004) reported that education has a shorter lasting effect on the public mind than contact. Direct contact with recovering and well-functioning persons with mental illness brings about more lingering attitude change. Protests on the other hand, may have a rebound effect, with some behavioral change but little attitudinal change, even worsening in some instances. Here in India, we have attempted education of the community through public programs. For instance, in the “tridal” model, contact is the aim, rather than mere education. Protest is a lesser used form of efforts at inclusion, reserved for cases where it becomes a dire need due to infringement of human rights of persons with mental illness and their family members. Hinshaw (2007) wrote of stigma and mental illness as the “mark of shame.” This mark, in the case of a severe and chronic illness like schizophrenia, is initially invisible, but soon becomes visible by association, such as seeing people receive help from known sources of psychiatric treatment and long-stay institutions of mental health care and the associated “strange” behaviors that arise out of the illness. Myths and misconceptions surrounding schizophrenia lead to social stigma as well as self-stigma, and the latter deals a fatal blow to efforts at inclusion, since persons with mental illness see themselves as unworthy of help and support and get trapped into a “why try?” mode of thinking (Thornicroft, 2006).

SCHIZOPHRENIA IN THE INDIAN CONTEXT Practice guidelines for schizophrenia (National Collaborating Center for Mental Health, 2002) usually focus on three phases: initiation of treatment

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in the first episode, the acute phase, and promoting recovery. India has begun to look at treatment of schizophrenia as not merely handling of symptoms but also relief from the sequelae of the illness. It is now clear that health professionals should work in partnership with service users and carers, offering help, treatment, and care in an atmosphere of hope and optimism. In India, concerted efforts are being made to create a body of trained professionals to work in this field, along with an equally strong and committed workforce of volunteers in the field of mental health. Involvement of families, social organizations, voluntary and social welfare bodies, and even religious organizations will ensure that the needs of people with mental illness such as schizophrenia are not neglected. The three sections that follow highlight how professionals in India have been seeking to promote inclusion on the social front, and empowerment on the personal front, through concerted efforts designed to help people with schizophrenia and their caregivers. Empowerment can be a process, an outcome, or an ideology (Linhorst, 2006), and mental health professionals need to bear all three interpretations in mind as they work towards rehabilitation and, finally, inclusion (Leff & Warner, 2006). Schizophrenia was first described in 1896 by Kraeplin, who typified the illness as “dementia praecox,” a chronic, deteriorating illness that strikes young people. In 1913, Bleuler challenged the concept held thus far, of decline to feeble mindedness, and schizophrenia was now seen as a disease entity, a complex syndrome comprising of hallucinations, delusions, bizarre beliefs, incoherent speech, poverty of affect, and social withdrawal. By the end of the 20th century, schizophrenia research the world over, and in India as well, began to focus on high-risk symptoms, including anhedonia (lack of capacity to experience pleasure), attention deficits, poor socialization and familial aggregation, among others. Plenty of biological and neuropharmacological factors in schizophrenia were identified as well. Social pathology and cognitive theories explaining the deficits underlying the illness were proposed and supported with a large quantum of research. Interpersonal, occupational, and social implications of these cognitive deficits were discussed at length by a number of scholars, from India as well as the world over. The social implications of the illness were clear. The patient’s delusions— fixed, unshakeable beliefs with no grounding in reality—tended to alienate the person from well wishers and from the social fabric in general. Persistent hallucinations (sensory experiences in the absence of sensory stimuli) made it very difficult if not impossible for them to work in gainful occupations, and the resultant behavior, which looked patently bizarre to the observer, alienated them from society. A drop in social skills, which was the typical sequel of the illness, frequently led to social ostracism and exclusion. Due to myths and misconceptions in the minds of the public, superstitions, and magical beliefs about the illness, people believed that these patients were sinners, evil, or possessed, and this led to even more exclusion and social rebuffs. At the same time, families were struggling to seek foothold in the public mental health system, to sustain treatment for their loved ones. Modern and improved medications led to better symptom relief, but a cure was still not


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in sight. The loss of human capital in terms of ability for gainful employment was huge (Sovani, Thatte, & Apte, 2004), and the social skills deficits that haunted patients rendered marriage, family life, and social life close to impossible. A large multicentric study conducted in the state of Maharashtra by Sovani et al. (2004) assessed 200 people who had been ill with schizophrenia for at least five years duration and were not responding well to antipsychotic medications. They found that of the 11 professionals among this sample, only 4 were currently pursuing their profession; salaried employees had slipped from 44 to 11, skilled labor from 18 to 3, and unskilled labor from 49 and 22. As a result, the number of people in the sample who had been unemployed (i.e., a total of 78 at the time of onset) had swelled to a mind-boggling 160 after the illness struck. Hence, not only did almost 25 percent of the skilled salaried employees lose their vocational standing, even unskilled workers and the number of unemployed were over double the original figure. Public awareness programs educating the masses about this illness have been and are being held in the relatively better educated portions of India, but inclusion of this affected group into society seems like a distant dream. The stigma associated with schizophrenia in India needs to be handled before social acceptance will be possible. Corrigan and Lundin (2001) defined stigma as a series of negative attitudes people have about particular groups, which results in negative stereotypes. Prejudice is manifested by agreeing with these stereotypes. Discrimination is the behavior that results. These negative attitudes often arise out of a complete lack of knowledge about a certain biopsychosocial condition, for instance, schizophrenia. Public awareness programs, run by institutions like IPH and SCARF, enjoy a high level of community acceptance and have led to some reduction in the myths and misconceptions about schizophrenia. For instance, IPH has regularly hosted schizophrenia conferences, for people with schizophrenia in remission, accompanied by one caregiver from their family (Sovani, 1992, 1993). This “conference” gives a healthy sense of importance to the Shubharthi, helping them see that their illness is a scientific entity, to be studied and understood, not feared. The conference consists of psychoeducational talks in the local language, sessions based on frequently asked questions, and interactive sessions. Further, IPH has hosted a schizophrenia rights conference, where stakeholders were invited to participate, discuss issues and come up with a draft rights document. Mental health professionals, including psychiatrists, psychologists, social workers, and occupational therapists, as well as people suffering from the illness and their family members, people who have recovered from the illness, potential employers of people with mental illness, and social activists, among others, were invited to this rights conference, and the proceedings were documented and sent to the Ministries for Health and Welfare. Caregiver conferences have become a biannual feature at IPH. The focus in these is to provide a two-day conference for family members of people with schizophrenia, conducted in the local language. On occasions, conferences are residential, when space and facilities are available, so that informal interactions can occur when formal ones are over for the day.

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Films in the local language, put together by highly acclaimed directors and actors, have been used to take the message of inclusion to the layperson. For example, the Marathi film (Marathi is the official state language for Maharashtra) Devraee is a powerful, award-winning film that metaphorically weaves together images of a holy grove, where a variety of botanical species coexist in harmony, with an inclusive society that would “permit” within it the existence of a “different” few. An accompanying book Devraaichyaa Savleet (Nadkarni, 2005) elaborated on this metaphor for the lay reader. The screening of films pertaining to mental illness, specifically schizophrenia, followed by a discussion, has now become a common and popular feature of preconference proceedings (e.g., International Conference of Schizophrenia, which is hosted once every two years by SCARF, regularly screens Frames of Mind, a series of short films on the subject). Conferences and symposia are also held on mental illness and are usually well attended. In the field of academia, the appearance of courses on rehabilitation, counseling for caregivers, and quality of life in chronic illness, conducted by institutes such as University of Mumbai; NIMHANS, Bangalore; Tata Institute of Social Sciences, Mumbai; SCARF, Chennai; PGIMER, Chandigarh; and CIP, Ranchi, among others, has brought a wave of awareness of the needs of people with mental illness among youngsters and the student population. A similar wave of awareness is also being created now among the informal caregivers of people with schizophrenia, members of their immediate families. Workshops are regularly conducted by clinical psychologists at IPH to convey the findings to the caregivers of people with schizophrenia.

PEOPLE ON THE PATH TO WELLNESS: SHUBHARTHIS The process of renaming can often lead to some degree of destigmatization and build inclusive attitudes. Thus, the IPH has abandoned the diagnostic labels associated with schizophrenia in favor of the term Shubharthis, or people on the path to wellness. In Japan the terminology of Seishin Bunretsu Byo (mind-split disease) has been transformed into the new term Togo Shitcho Sho (integration disorder), a renaming triggered by the request of a group of family members of people with schizophrenia. The often asked question of “what is in a name?” was met with a clear reply: “a great deal.” The World Schizophrenia Fellowship endorsed the view that stigmatizing names can do a lot of harm, and nomenclature devoid of stigma can help reduce social distance. Politically correct language can go a long way toward ensuring inclusion. Saraceno (2006), who chairs the mental health division of WHO, stressed the human side of mental illness and rehabilitation. He emphasized the need for nonstigmatizing nomenclature and highlighted how dehumanization often occurs during rehabilitation. He cited examples where people recovering from the illness were required to complete tasks below their premorbid ability level, not in keeping with their human dignity, merely to keep them “occupied.” Mainstream participation in society should be seen as a right, not as charity.


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UNCONVENTIONAL METHODOLOGIES IN THE PROCESS OF INCLUSION: THE TRIDAL MODEL Tridal is a process that we apply to empower a person recovering from schizophrenia. People are supported to prepare a product, carry through the packing process, and handle sales. Complete ownership of the product is therefore handed over to the people who are working to produce it. The word tridal literally means “made up of three components.” Only if all three components are present and coordinated does the complete gestalt, the whole, get formed. Further, tridal is also a three-leaf arrangement of the bel tree, a species that has significant religious associations with Lord Shiva and is known to have strong antipsychotic properties. The three components in tridal are the person, the caregiver, and the community. All three need to work in unison and be in harmony with each other to achieve results. This model, thus, embeds rehabilitation in the community and local sociocultural fabric. Tridal activity has been proceeding continuously for over several years now, and some of the products created by the group are for sale. The model involves psychiatrist referral of the person with schizophrenia, in partial or preferably full remission. Medical care continues, with the treating psychiatrist, and psychosocial intervention is delivered by IPH. The members of the tridal, the Shubharthis, meet on a daily basis in a large room allotted exclusively to their activities. Their work is supervised by their own family members, dubbed the Suhruds, or well wishers who take turns to supervise. Because one or two Suhruds can manage the supervisory work, this plan affords some rest, relief, and leisure to the other family members. Trained mental health professionals work in collaboration with Suhruds, and can utilize their knowledge and skills for other mental health work. The communication skills of the Shubharthis also improve because they have to learn to communicate with different people every day, rather than only their parents. At the same time, it does not result in stress or information overload, because these are a handful of known people, not strangers. To provide relief from their work, which could include production of powdered spices, a dehydrated ready-mix of health porridge powder, making paper bags and greeting cards to order, creating of seasonal decorations for religious festivals, or cutting and packing cleaned vegetables, the Shubharthis are given an hour of leisure to eat their packed lunch, rest, and talk among themselves. Observations have shown that there has been a marked increase in informal conversation since they began working. Once a week, the Shubharthis have a special leisure hour, conducted by volunteers or psychologists (or on occasion both), where they solve word puzzles, handle cognitive tasks involving memory and learning, are challenged with some divergent thinking tasks such as word fluency, or share experiences of some recent event, excerpts from recently read books, magazines, newspapers, and so on. Shubharthis are observed to look forward to these Wednesday sessions, and currently a pre/post control study using simple neurocognitive performance tasks such as mazes, list learning, and attention screens is being conducted to assess the impact of these sessions on cognitive performance of the Shubharthis. Once or twice a year, the Shubharthis, Suhruds, volunteers,

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and psychologists go out for a day picnic, an event that is seen to linger in the memories of Shubharthis with joy and excitement. Apart from the remuneration, the tridal’s other important contribution is that it brings a regimen, a routine, a discipline to life. In the absence of such a regimen, lethargy, listlessness, and lack of motivation may take over. Since tridal has started, there has been an average attendance of 8 to 10 Shubharthis every day. In one sharing session, the participants shared with the professionals their newfound sense of being an important component of the family, having fixed work timing “just like the others in the family.” Tridal members, both Shubharthis and Suhruds, handle sales of the goods produced by them in large functions organized by the IPM, and the profits are shared by the Shubharthis in proportion to the amount of hours they have worked. Payday is therefore looked on with great excitement, since it returns to the group a life of dignity and a semblance of independence. The tridal module is one that can be replicated in any sociocultural setting and in any country. There are several well-established approaches to the rehabilitation of people suffering from severe mental illness. A popular concept is that of a job club, a structured behavioral approach to help unemployed people to find jobs (Azrin & Besalel, 1980). Systematic guidance is provided, as per this approach, to collect knowledge about job availability. In the process of building up tridal, various activities had to be undertaken by the community mental health center to create the broad-based groundwork for the vocational rehabilitation program. Family and caregiver support was essential. A viable health and mental health delivery model for the resourcepoor and manpower-poor developing countries seems to be one that relies on alert general practitioners and trained volunteers. This was documented over 20 years ago by NIMHANS (Kapur & Isaac, 1978; Srinivasa Murthy et al., 1988), and is continued at IPH and several other NGOs today.

NEW DIRECTIONS, THE YEARS TO COME New projects aimed at helping and including people with schizophrenia are in the pipeline in India. IPH has proposed a residential setting called Manas-parisar, a local word implying a healthy environment for mental health. Manas-parisar is to be used as a place for people with schizophrenia and one or more members of their family to stay for a defined period of time, to heal and rebuild family bonds and communication channels, to return to their home and habitat healthier and more functional. It is visualized as a short-stay facility where services for mental health promotion, relaxation, and recuperation will be offered to clients. Similar preventive and early intervention modules are developing in various parts of India, appropriate to the geography, social structure, and subculture in each locality. Centers like Banyan in Chennai offer shelter to people with mental illness, particularly vulnerable women, who have been abandoned by society. Long-stay residential hospitals funded by the state are providing similar halfway homes to encourage family members to reside for a short period with the person with mental illness and then return to the family. Early


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detection and early intervention programs are not yet widely available. Mass media, the press, and live media are all becoming more sensitive to mental illness and health issues, wording stories more carefully and in a politically correct manner. High-profile cases of schizophrenia and other mental illnesses are still sometimes handled with curiosity and insensitivity, but the number of mental health professionals is steadily increasing. Steadily, more television and radio time is devoted to public awareness campaigns, discussions about mental health issues, and the need for inclusion. A vast amount of work is being done to promote inclusion of people with mental illness in general and schizophrenia in particular. Progress comes and goes, but overall there seems to be more ground gained than lost. In a country like India, inclusion of the mentally ill may not be a distant dream. Existing family and social structures provide a safety net for the weak and vulnerable. With rapidly improving of medications to deal with the sequelae of schizophrenia, remission is quicker, thus increasing the likelihood of these social structures coming into play earlier rather than later. Better education, and a gradually improving standard of living as a result of globalization, gives better access to psychoeducational material, awareness platforms, social movements, and NGO efforts, increasing the likelihood that people with schizophrenia will be pulled in rather than thrown out of existing strong, supportive social networks.

REFERENCES Azrin, N. H., & Besalel, V. A. (1980). A job club’s counsellors manual. Baltimore: University Park Press. Bustillo, J. R. (2008, June). Schizophrenia. The Merck manual of medical information— Second home edition for patients and caregivers. Whitehouse Station, N.J.: Merck Research Laboratories. Retrieved November 20, 2008 from www.merck.com/ mmhe/sec07/ch107/ch107b.html. Corrigan, P. W. (Ed.). (2004). On the stigma of mental illness: Practical strategies for research and social change. London: Oxford University Press. Corrigan, P. W., & Lundin, R. (2001). Don’t call me nuts: Coping with the stigma of mental illness. Illinois: Recovery Press. Government of India (2000). Indian National Human Rights Commission Report. Hinshaw, S. (2007). The mark of shame: Stigma of mental illness and an agenda for change. London: Oxford University Press. Huxley, P., & Thornicroft, G. (2003). Editorial: Social inclusion, social quality and mental illness. British Journal of Psychiatry, 182, 289–290. Kapur, M., & Isaac, M. (1978). An inexpensive method of detecting psychosis and epilepsy in the community. Lancet, 11. Kulhara, P. (2000). Course and outcome of schizophrenia in India: Reflections on Indian research. In R. Srinivasa Murthy (Ed.), Mental health in India. Bangalore: PAMH. Leff, J., & Warner, R. (2006). Social inclusion of people with mental illness. Cambridge: Cambridge University Press. Linhorst, D. M. (2006). Empowering people with severe mental illness: A practical guide. Oxford: Oxford University Press. Nadkarni, A. (2005). Devraichyaa savaleet (Marathi). Majestic Prakashan.

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National Collaborating Center for Mental Health. (2002). NHS guidelines for treatment of schizophrenia. Core Interventions in the treatment and management of schizophrenia in primary and secondary care. United Kingdom: NHS. Provencher, H. L. (1996). Objective burden among primary caregivers of persons with chronic schizophrenia. Journal of Psychiatry and Mental Health Nursing, 3, 181–187. Saraceno, B. (2006). Psychiatry between broad holistic thinking and narrow biomedical practice. Keynote address of Second International Conference on Schizophrenia (IConS II), Chennai, India. Sovani, A. S. (1992). Positive and negative symptoms of schizophrenia: Tips to the caregiver. Indian Journal of Internal Medicine, 2(7), 219–221. Sovani, A. S. (1993). Understanding schizophrenia: A family psycho-educational approach. Indian Journal of Psychiatry, 35(2), 97–98. Sovani, A. S. Thatte, S.S ., & Apte, A. (2004). Social disadvantage as a sequel of schizophrenia. Indian Psychological Review. Combined Vol. 58 & 59, No. 4 & special issue, 69–76. Sovani, A. S. Thatte, S. S., & Deshpande, C. G. (1997). University Grants Commission funded major research project on treatment resistant schizophrenia. Unpublished monograph available with J. N. Library, University of Mumbai. Srinivasa Murthy, R. (2000a). Strengthening families through employment: Past, present and future: A view from developing countries. Keynote address at the Fourth Biennial Conference, World Fellowship for Schizophrenia and Allied Disorders, Jerusalem. Srinivasa Murthy, R. (Ed.). (2000b). Mental health in India. Bangalore: PAMH. Srinivasa Murthy, R., Chandrasekar, C. R., Nagarajiah, R., Isaac, M. K., Parthasarathy, R., and Raghuram, A. (1988). Manual of mental health care for multipurpose workers. Bangalore: NIMHANS. Thornicroft, G. (2006). Shunned: Discrimination against people with mental illness. Oxford: Oxford University Press.

CHAPTER 19

Excerpts from Meditations of the Heart on the Workings (or Not) of the Hand Bernadette Blount Salley*

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He’s A “Keeper” Today, I saw the most beautiful double rainbow in the sky . . . The Covenant-Keeping God Who sets His bow In the Sky Will Keep You . . . [Bernadette Blount Salley]

ife is filled with adventure and unexpected experiences. If we knew in advance that illness, injury, pain, and adversity were lurking around the next corner, we probably wouldn’t bother to get out of bed. And we certainly would not venture beyond the confines of our comfortable safety zones. But sometimes our responsibilities and the need for productive activity require that we go into the community. Such was the case for me. On one chilly December morning in 2003, I left home to run an errand. My plan was to go to the store, get the discount that could be applied to a recent purchase, and return home. Well, that plan was quickly dismantled, and life for me would never be quite the same. You see, as soon as I stepped onto the walkway to enter the store, I fell down. Boom! Just like that. Before I could blink or brace myself, my left hand and elbow hit the pavement and I landed flat on my back. Ouch! *(a.k.a. Job’s Cousin)

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While dazed, looking up at the sky, trying to determine what had happened, I realized that a normal-looking walkway was anything but normal. It was a sheet of solid ice. Of course, there was no salt sprinkled on it to melt the ice. And to add insult to injury, there was no warning sign posted anywhere of the impending danger. In less than a millisecond, my whole life was upset because somebody neglected to put salt on the walkway, and because someone else chose not to alert customers to the presence of danger. Interestingly enough, a very irate customer saw me lying on the walkway and yelled out, “I told them that somebody was gonna get hurt on this ice!” My left arm, left hand, and back were hurting. A new chapter of my life was about to unfold. And unfortunately, the pain and inflammation only increased. A short time afterward, a visit to the hospital emergency room showed that no bones were broken. For that, I was truly grateful. But my hand and elbow had definitely been injured. In time, the full scope of what that meant would be revealed. Oh, by the way, did I mention that I am a professional musician and that playing the piano excellently with both of my hands is a major part of my vocation? Even though I had given birth to two children, the excruciating pain from this injury far surpassed anything I had ever experienced with childbirth or dental work. When my hand and arm refused to stop hurting both day and night, I knew that I could not stay in a state of denial any longer. Something was wrong. So I scheduled a follow-up visit with my doctor. She was both competent and compassionate. Determined to gain more insights about my swollen, nonfunctioning hand, she set up a nerve conduction test and a referral to a neurologist. Between the time spent with MRIs, X-rays, exams, and therapy, it seemed as though I had moved in with the medical community. But nothing had prepared me for the trauma and grief associated with the sudden loss of the use of a limb. The reality is that every aspect of my life was affected by that fall. And yet I was left with the task of figuring out how to go on with life as usual in spite of this sudden disability. I was still expected to work, drive in wintry weather, take care of my responsibilities as a wife and mother of two, and do everything that Superwoman does without missing a beat. Reality had tapped me on the shoulder, long before the people around me would accept this sudden change of circumstance. In fact, their attitude was more like, “Yeah, we know you fell and we know that you’re injured, but what does that have to do with all of the stuff we are still counting on you to do?” Not only was I in constant pain that medicine did not stop, I was also experiencing anguish because I could not do for others what I felt called to do. I could not bring encouragement to others with the music that I enjoyed playing. I could not even comfort those who were walking through bereavement. I was devastated. Some people were very compassionate and kind to my family and me. Some other people ostracized me for being unable to perform. Some individuals even told me that God must have wanted me to have a vacation. (Since when did trauma and nonstop excruciating pain count as a vacation?) There were several people who told me that it would have been better

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for my hand to be broken. (But they were not with me looking at the broken, abnormal appendages that I saw week after week during several months of therapy.) How could they tell me that someone else’s worst nightmare would be better than what I was going through? Some people even questioned my spirituality because of the adversity I was experiencing. Those individuals tried to make me feel guilty for no longer being at their beck and call. Did somebody forget that I was the one trying to live through a very bad set of circumstances that I didn’t ask for? How could some people be so unconcerned, so uncaring, and so callous? And why did the first round of specialists insist that the test results were normal when in fact my hand and arm were not functioning normally at all? Even though there are not enough pages available to share every detail about this true story, at least you now have some background information about this writer’s experience with disability. Even though the neurologist told me that my hand would never be able to function as well as it did before the injury, something in my spirit was silently saying, “No, Mr. Neurologist. This time you are wrong. I will survive this; I will come back better and stronger than before. Better. Not bitter.” At the time, I had no tangible proof . . . only my faith in what God can do. As I was journeying through the healing process, the Lord began to encourage my soul through inspirational thoughts that became poetry and prose. As you read these pages, I sincerely hope that you will be reminded that the human spirit can be a powerhouse of enlightenment, encouragement, and enthusiasm. Empowerment often comes on the heels of perseverance. It is the human spirit that will ultimately be victorious, even in the face of adversity. When I first started writing these meditative thoughts, I had no idea how much adversity I would face and live through. The difficulties moved me to comprehend life on a much deeper level. Now, I can “see” beyond facades and masks that people often use to insulate themselves from internal and external pain. Now, I can really “feel” levels of grief that I would never have chosen to experience. I am utterly amazed at how the rough, tough places have become the preparation that helps me be able to greet, encourage, and comfort those whose hope is wavering in the face of deep sorrow and suffering. Years ago, Dr. Robert Schuller said, “Tough times never last, but tough people do.” I think he was correct. I can truly say that God preserved my mind, my body, and my soul when life got rough and tough. When life bruised me, my faith in God’s word kept me from getting bitter. I realize now that my life became a laboratory in which not only was the development of my character on display, but so was the application of God’s grace and healing. “And though this world with evil filled, should threaten to undo us; we will not fear for God has willed His truth to triumph through us.”1 My Left Hand Talks My left hand talks! I didn’t know it knew how, But, ever since that painful accident It speaks five languages or more, and how.

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Some days, it only whispers. Sometimes there’s an almost normal tone. But, more often than I would care to admit It SCREAMS! It Yells! It moans. But, I’ve got to keep on laughing, To keep myself from crying. There are times it’s just so hard to believe That pain can hurt so bad. We’re not exempt from pain, you know All my life, I’ve been “the sympathetic-type.” They said, “You are just too sensitive.” But, that gift has enabled me to write. For, I can relate to others’ suffering Because, I’ve experienced it so intensely. I know what it’s like when others make All kinds of remarks that are trite. If only they could feel what I know . . . But . . . they can’t, And, they don’t. And, some never will, Won’t ever understand why people love Jesus so much. But, I do. ’Cause I know He has seen me through this rough place. And, He’ll be there for you too, no matter what. Yep. My left hand talks. But, you know what? It’s okay because I understand every language that it speaks. [Bernadette Blount Salley] I Cry Silently I walk in and out of buildings. I go to and from school. I go to and from work. I cry silently . . . I go into and out of my home. I go into and out of the library. I go into and out of the store. I cry silently. It’s because I have such a beautiful smile, It’s because I’m so pleasant to all, It’s because I don’t protest loudly or scream That they never hear my tears.

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It’s because they’re just so busy, Too busy to be bothered, Too busy to be burdened With the cares of people like me That they can never pause long enough to see. For, they live in perpetual motion, Some good, some not good at all, They are always moving so fast that they never STOP to see the tears that form in my eyes. They live on a different frequency, Indifferent to suffering and pain. They’ve allowed their tears to dry up And, they no longer even understand why I Cry Silently . . . . . . But, Jesus wept . . . “Blessed are the merciful . . .” Matthew 5:7 [Bernadette Blount Salley] Hands Are a Gift From God Have you ever thought about your hands And all of the things that they can do? Have you taken the time to ponder How important they are to you? Do you realize the significance That they really, really hold? To the body, hands are far more precious Than life’s silver, diamonds or gold. For, with the hands you can beckon. You can point to a new direction. With hands you can feed yourself and others Or delight in pure confection. It takes hands to reach out to others. Hands are helpful when giving warm hugs. Hands are strong enough to push, to pull, And, even give a tug. Hands can help you steady your balance. Hands can help you lift a sister or a brother. Hands can turn things around. And, bring people closer together. Hands united for one purpose, Possess strength that none can match.

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Hands can grip weeds oh so tightly, And pull them out of your garden patch. Hands are an amazing gift from God, Given to greet or to wave goodbye. I’ll bet that you’re grateful For hands that can function, And, I assure you, so am I . . . For you see, Hands are a gift from God. [Bernadette Blount Salley]

NOTE 1. “A Mighty Fortress Is Our God,” lyrics by Martin Luther (1483–1546) (translated by Frederick H. Hedge, 1805–1890), African American Heritage Hymnal, (p. 124. Chicago: GIA Publications, 2001.

CHAPTER 20

A Taonga Is a Taonga in Any Language Huhana Hickey

It’s a disability to have your land taken off you, it’s a disability to have your family dissolved and shifted to an urban environment, where you’ve never been before. It’s a disability to be told that you can no longer grow your own food so you have to get a job in a system that has been set up by white people for white people to try and survive. We’re a group of people who are brown living in a white system set up by white people, that is a disadvantage and that doesn’t make it easy. . . . I probably think people who are struggling and it’s not their fault they’re struggling. Just with Life. Like being old, it’s a disability. (Kingi & Bray, 2000)

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hese quotes are typical of the thinking of Maori when discussing what it means to identify as a disabled person in Maori society.1 In defining disability, Maori are often confused around what a disability is as understood by mainstream society, the state, and its policy makers. It appears that many Maori consider all Maori to be disabled simply through the process of colonization. The history of colonization and its wide-reaching impact on Tangata Whanua (Kingi & Bray, 2000) provides an important context from within which to view disability and the concept of disability in whanau.2 Issues that were identified by the people as disabling could be attributed to the residual and current effects of colonization. Colonization literally means that a group of people has been passed through the colon of that of another people and deemed “waste” at the conclusion of the process. On reflection and after further analysis, I have come to regard colonization as the primary disability. All issues outlined by the participants could be directly attributed to and considered as residual to the disabling effects of colonization on iwi3 Maori.

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I do not have a problem with accepting this analysis of disability for Maori being a primary result of colonization, because the psychosocial effects shown over a century after the signing of the Treaty of Waitangi appear to support this analysis. I do, however, have an interest in those who identified as hunga haua4 Maori prior to colonization and how they are identified and seen within their own Maori community now. I am even more narrowly interested in the impact this has had on hunga haua Maori women then and now. The identity of this group is, in my opinion and by virtue of this research, ignored when it comes to identifying their specific needs around disability as understood by the government and their providers. My research, I hope, addresses these gaps and creates a greater understanding for implementing better systems for hunga haua Maori who also face the broader issues faced by all Maori. It is important to explore terminology and what it means to us. We also need to explore the context within which terms are used. I am using a Maori term to identify Maori with disabilities (hunga haua Maori). Ryan’s (2003) dictionary of Maori defines hunga as “people, down, decayed, faded” ( p. 17) and haua as “crippled, lame, anti-social, mental handicap” (p. 13). These words were used originally to describe people with disabilities from a medical understanding, where similar terms (including decrepit, decayed, crippled) are common interpretations of disability. In using these terms, however, Maori providers have developed an understanding of hunga haua as meaning disability and, therefore, have created a new understanding of the language. I am identifying hunga haua Maori as being uniquely different Maori.5 In using this terminology in te reo Maori, I am placing a clear emphasis on the identity of this group as opposed to the pakeha6 terminology of disabled Maori (or Maori with disabilities), which has given rise to the previously discussed belief by some that all Maori are disabled by virtue of being colonized. Several well-known Maori phrases use these terms everywhere and appear to use medical terminology when identifying ourselves and our impairments. This, I believe, is a reflection of a misunderstanding of the term disability, the emergence of the medical diagnostic model to try and understand disability/impairment issues among Maori and a lack of exploration of hunga haua Maori and its meaning within disability discourse in New Zealand today. Why am I bothering to raise these issues? Maria Barile (2000), a feminist disability advocate from Canada, uses the concept of “multiple minority groups” to situate those who experience double, triple, or more layers of oppression because of their varying minority statuses. She contends that those in multiple minority groups experience more limiting unequal treatment than those in single minority groups. For this reason, research often sees disability as affecting all Maori rather than being a term confined to the identity of hunga haua Maori within their midst. Barile (2000) stated: That even with membership in five or more “groups” the individual does not necessarily get his or her needs met because the groups are designed to address a single, or double identification or minority status. The combination of disabilities, social or ethnic backgrounds, gender or sexual orientation differences, are

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not addressed by the groups—the individual experiences. The challenge then, is to use new analytical tools or exist to emancipate those experiences multiple levels of discrimination due to their multiple minority status. (pp. 126–127)

To understand New Zealand hunga haua Maori, we need to explore postcolonial theory and analyze the colonized and the colonizer.7 In New Zealand, addresses the issues of oppression and colonization for nondisabled Maori. There is no movement to examine the sociological impact of colonization on Maori who represent “other” identities within their ethnic identity. Groups such as hunga haua Maori and takataapui Maori8 are virtually ignored. Proweller (1998) discussed this shift in regard to the whiteness of discourse of “other” as Discourse on race has broadened in the last 5 years to include examination of whiteness as a fractured and continuously shifting racial border . . . and exploration of how it is that whiteness accrues and hides its own power and privilege. . . . By turning the ethnographic lens back on the cultural center, social critique of whiteness has forced what has generally been applied in the study of race to the surface as a separate social and political category of analysis. . . . Where it enters contemporary race discourse, the construction of a white “self” strategically depends on the counterproduction of a discourse of blackness where representations of whiteness exist in relation to an “other” usually denoted through a language of binary oppositions that assigns positive attributes to being white. (pp. 96–97)

Why is this an issue? To understand hunga haua Maori, it needs to be understood within a Maori and colonial context. The concept of the “Other” is an important one in the sociology of oppressions. When a body is talked about as being different—usually in terms of race, gender ability—there is an implicit comparison to a norm. The response to the question “different from what?” ’ helps us to uncover those unstated norms. The white, male, physically-able body has long been taken as the standard of comparison-the one which one is “different from.”

One goal of minority studies is to analyze sites within the culture which help to maintain these norms and the value attached to them (Rice, 2000). In discussing the need for disability studies as a discourse in its own right, researchers have indicated that it is necessary to broaden the understanding about disability from a white, colonial construct to one that is more relevant to all people. Researchers have noted: Use of invalid testing methods is certainly one way of oppressing people. Depriving individuals of a means of expression is another. Challenging such established entrenched, institutionalized cultural notions of dis/ability is an uphill battle. But a broader perspective such as disability studies is useful in that it provides a forum, an established on-going critique of the ways in which “disability” is constructed in various cultural locations . . . others with disabilities are speaking out, telling their stories’ challenging professional and simplistic media constructions of what disability means (e.g., Mairs, 1996). Like Afro-American

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Studies and Women’s Studies, facilitated communication and disability studies challenge the power and Privilege of the unstated, dominant groups with a goal of crossing the border to a more inclusive and participatory society. (Rice, 2000, p. 9)

In relation to Canadian Indigenous people with disabilities, several researchers (Burelle, 1996; Assembly of Manitoba Chiefs, 1997; Fricke, 1998) have noted that they face ethnoracial issues different to that of other groups in Canada because of a lack of culturally appropriate services and information in their original languages. It has been noted that services might not be provided or they have to face jurisdictional conflicts between different levels of governments, and they have twice the rate of disability in their communities (Burelle, 2000). In New Zealand until recently,9 the Treaty of Waitangi principles of partnership, participation, and protection were becoming a normal part of health and disability policy and law. My question, however, if there is no understanding of hunga haua wahini10 Maori from a Maori perspective, and these policies and services are implanted from the colonial perspective or discourse of disability, then how can the needs of hunga haua wahini Maori be met? New Zealand policy around disability has implemented Oliver’s (2003) social model through the New Zealand disability strategy which has an objective: the inclusion of Maori people with disability into society. These objectives were, however, developed using Pakeha/Tauiwi/white research which, in my opinion, is where the problem lies. Mason Durie has, over the years, developed a model of well-being for Maori called TeWhare Tapa Wha (Durie, 2001). The model provides a framework for implementing and measuring the effectiveness of service delivery for Maori in the health services. This model is also relevant for hunga haua wahine Maori. However, without a clear definition and understanding of the identity of being hunga haua wahine Maori, this group faces ongoing exclusion and misunderstanding. This issue is experienced in all groups who have experienced colonization and is not unique to Maori: Progress has been made during the past three decades, in many aspects of Aboriginal health. But despite these recent improvements, Aboriginal Canadians face a disproportionate number of serious health problems. Specifically, they are far more likely than Canadians overall to have a disability. . . . Not only do disability rates differ, but so do the dimensions of the problem. Aboriginal people with disabilities generally encounter difficulties that non-Aboriginals do not. The Special Committee stated in 1981 that “while all disabled Canadians have obstacles to overcome, Native Canadians who are disabled often have more . . . As well, they often have to cope with the obstacles of prejudice.” (Ng, 1996)

The issues for hunga haua Maori are similar in that if they leave their rural Marae11 environment to access better services, they are faced with the loss of their whanau environment, lifestyle, and community. The Marae is often not made accessible, and where once they would have been involved, few Marae have adapted their environments to include their hunga haua. Some Maori services are trying to provide culturally appropriate services by using Durie’s model, which is relevant for all Maori (disabled and nondisabled)


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in that it focuses on the balance of identity necessary to achieve wellness and is therefore a good model to use in measuring such wellness. It does not, however, address the issues around attitudes many Maoris have toward living with impairments that cause disability when they are trying to access their traditional and mainstream society. Applying a non-Maori model is not appropriate in that it is set around disability and medical discourse and not around Maori disability and wellness discourse. Maori need to (and are unable to) access rongoa12 services or other tohunga services that were banned under the Tohunga Suppression Act of 1907. This act served to deny Maori access to their traditional health and disability services according to how they practiced, and this denial of access to traditional services, the implementation of institutional health and disability services, and the loss of generations of those who held the traditional knowledge has, in part, kept hunga haua Maori lost, hidden, and invisible within their own communities and within society generally. Attitudes around hunga haua identity among Maori are driven by makutu13 and hara14 and how that affects a person’s health. Although some of this thinking still exists today, it is possible to work with Maori and their beliefs around these concepts using modern understandings of disabilities. Indeed, the needs of Maori can be addressed with modern medicines alongside traditional practices. However, it is important to work with the individual and whanau/whangai to ensure long-term well-being. It is necessary to recognize that traditional practices can significantly assist toward the wellbeing of hunga haua Maori and assist them in addressing some of their own fears, issues around having this identity, and how to address this with their whanau/iwi in relation to access to their Marae, their whanau, and their community in general. We have managed to evolve our thinking around our prayers, songs, practices in everyday life I’m sure we can evolve our thinking around disability hunga haua identity if we can address some of the fears that still exist around what is makutu/hara and what is simply something that is the result of a medical condition through no fault of anyone or an accident out of the hands of the person who is affected by it. We need not, and indeed we should not, ignore our traditional beliefs or our practices, and I am certainly not advocating that. However, we now live in a modern world with a new understanding of some things. For our wellbeing, in my opinion, it is important when someone identifies as hunga haua to bring together the old and the new to apply a good model of healing both in attitude and within ourselves. For hunga haua wahine, the issues are not very different, but we are statistically worse off financially and often face greater incidences of abuse by others and exclusion from our iwi/hapu and whanau, and we are often seen to be without value within our community because of the impairments we live with. When I think of the ideal role model for Indigenous disabled women, I am reminded of Frida Kahlo, a Mexican woman born in 1907 with severe disabilities, who lived every day of her 47 years despite these disabilities. She celebrated her ethnicity, her sexuality, and her artistic talents by living her

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reality in her art. This woman did not let the men of her community limit her, she did not let her own people keep her back, she had the ability to give a voice where voices did not exist. I am also aware of other women in history who achieved great things despite the impairments with which they had to live. These women left valuable legacies. Hunga haua wahine Maori can claim their rightful place within their community; however, it cannot be done without the understanding of who we are and how we are to be supported. This is where future work needs to be focused. Our journey, while it feels solitary, is a well-known, well-worn path covered by women for years now and while we may have a long way to go, we have at least come this far. Women of color in struggle all over the world. . . . I know them for sister, mother, daughter, voice and teacher, inheritor of fire. . . . Rangitunoa, Maori tribal woman. Standing to speak in her peoples’ sacred place, the marae. Women have not spoken here before because they have not known the ancient tongue. In the old days women did not speak on the Marie at all. Now this young woman . . . stands to speak in the tongue of her people alone and suspect in her elders’ eyes. (Lord, 1988)

NOTES 1. Maori refers to the Indigenous people of New Zealand. In the Maori language, the terms means “natural.” 2. Family. 3. Tribe or clan. 4. Maori with disabilities (Maori who are uniquely different). 5. Personal communication with TePuni Kokiri (Ministry of Maori Affairs), Waikato staff member who is versed in the history of Maori language and its usage. His advice was that historically Maori with disabilities would have been identified as hunga haua, which he identified as meaning uniquely different—that we are all different through our different impairments, and these are unique to us. In light of this person’s information and from my readings around this wording, to the Tuhoe/ Ngati Porou thinking of disability historically, it is hoped my field research will back this assertion up. 6. The word for white people in New Zealand, other terms used are Tauiwi and Ngati Pakeha. 7. See works of Ngahuia Te Awekotuku and Linda Tuhiwai Smith, who have both explored these areas of study. 8. Takataapuhi is the term used among Maori for gay/lesbian/bisexual and transgendered Maori. 9. Since the Orewa speech by Don Brash of the National Party in December 2003 around race issues in New Zealand, there is growing uncertainty as to where policy stands in relation to the Treaty of Waitangi and funding to meet the needs of Maori. 10. Maori women with disability. 11. Meeting area of whanau or iwi, focal point of settlement, central area of village and its buildings, courtyard. 12. Maori medicines/healing. 13. Bewitched, black magic. 14. Sin, excess, crime.


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REFERENCES Assembly of Manitoba Chiefs. (1997). Certified Resolution: Fetal Alcohol Syndrome/ effects Resolution. Chiefs Health Assembly. February 4,5 and 6, 1997. Barile, M. (2000). Understanding the personal and political role of multiple minority status. Disability Studies Quarterly, 20, 123–128. Burelle, John P. (1996). A review of the literature related to First Nations children with disabilities and an identification of the barriers and obstacles existing in the service delivery system that impede First Nations children with disabilities. Assembly of Manitoba Chiefs. Canada. Durie, M. (2001). Maur ora the dynamics of Maori health. Melbourne: Oxford University Press. Fricke, M. W. (1998). ‘First Nations People with Disabilities: An Analysis of Service Delivery in Manitoba’ M. Sc. Thesis, Department of Community Health Science, University of Manitoba. Kingi, J., & Bray, A. (2000). Maori concepts of disability. New Zealand: Donald Beasley Institute. Lord, A. (1988). A burst of light. New York: Firebrand Books. Mairs, N. (1996). Waist-high in the world. Boston: Beacon Press. Ng, E. (1996). Disability among Canada’s aboriginal peoples in 1991. Health Reports, 8(1), 25. Oliver, M. (2003). Understanding disability from theory to practice. New York: St. Martins. Proweller, A. (1998). Constructing female identities: Meaning making in an upper middle class youth culture. Albany: SUNY Press. Rice, N. (2000). Crossing dis/ability borders: Beyond the myth of normal. In What is disability studies and what does it have to do with facilitated communication? (p. 3). Syracuse, NY: Facilitated Communication Institute. Ryan, P. M. (2003). Dictionary of modern Maori. New Zealand: Heinemann Education Group.


Afterword: Reclaiming Globalization for Disability— Further Insights

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hy did we need a book entitled Disability: Insights from across Fields and around the World? In all other sectors of life, globalization is a force that is bringing significant advantages (and challenges). Global collaboration can provide an opportunity to appreciate both cultural differences and similarities; it can encourage sensitivity to diversity and strength through cohesion. Through global cooperation, we may be able to address the extent to which people with chronic illness and disability and their issues are taken seriously. In his review of globalization, Kunitz (2000) concluded that globalization in the health arena has the “potential, incompletely realized, to create both an audience for the airing of injustices . . . and a means of redress” (p. 1538). However, to collaborate globally, we must first understand and overcome very real differences without losing our cultural distinctiveness. We must learn about each other and appreciate difference as a fundamental starting point in life (see chapter by Gibson). But we must also recognize and respect the impact of historical legacies such as colonialism (see chapters by Campbell, Barlow, & Barlow; Kelly), cultural or religious nuances (see chapters by Al Attiyah & Mian; Gharaibeh; Gotto; Sovani; Manyibe, Mamboleo, Mugoya, & Kampfe; Tawakkul, Bhatty, & Yousef), different degrees of social development (see chapter by Söderström), and geographical challenges (see chapter by Morrissey). We must also acknowledge that inequality is an inherent scar on the world’s health and social landscape (Jong-wook, 2003) that profoundly alters the experience of disability. For all these reasons, we needed to explore insights about disability from around the world. Is it possible for people with disability to reclaim the globalization movement and redirect its energy toward outcomes, such as access for all and

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the elimination of disparities in health and human services? As Emmerson, McConkey, Noonan Walsh, and Felce (2008) noted, the importance of a global approach to understanding and addressing disability is emerging. Globalization is fundamental to the establishment of the United Nations’ Millennium Development Goals (www.un.org/millenniumgoals) and to the work of the World Health Organization around the International Classification of Functioning, Disability and Health (2001). However, the most exciting global initiative in the area of disability is the United Nations Convention on the Rights of Persons with Disabilities, which was launched in December 2006. As we noted in the introduction, the convention has raised important human rights of citizenship for people with disabilities and has proposed a definition of disability that is remarkable. It is a definition that is not based on cause or a threshold of functioning (Leonardi, Bickenbach, Ustun, Kostanjsek, & Chatterji, 1996). Instead, disability is recognized to be an evolving concept that is always contextualized and relational as we have represented in this series. The chapters contained in this series are testament to the importance of rights-based legislation and the aspirations it can engender in society. In countries without suitable legislation that acknowledges disability, people with disabilities are invisible, their rights are not upheld, and their needs are not met (see chapters by Al Attiyah & Mian; Campbell; Bhatty, Moten, Tawakkul, & Amer; Gotto; Sovani; Spirito-Dalgin, Ergene, Marrone, & Munir). However, the fallibility of legislation is also a common theme across the chapters. Even in countries where legislation has been passed to provide access to buildings, education, or employment, it can remain unenforced or incomplete in its implementation (see chapters by Agorastou, Kalyva, Kaderoglou, & Stefandis; Kuemmel & Kuemmel). Some chapters highlight the unintended consequences of legislation, often created by the fact that legal rights are applied and interpreted inconsistently or are only ascribed to those who fit the “legal” definition of disability or conform to the expectations of that legislation (see chapters by Campbell; Hedlund; Pilgrim & Rogers). Too often in the industrialized world, we think there is nothing to learn from other places. We perceive those places as being in need of improvement through the adoption of the values that dominate industrialized countries. Through this contemporary form of colonization, we continue to export Western ideology without seeing its negative impact on other countries (see chapter by Lusk & Paul), instead assuming that Western ways are aspired to by all other cultures. This pervasive attitude perpetuates a belief among scholars from “developing” nations that solutions emanating from the United States (or other industrialized countries) are more legitimate than their own localized knowledge. In this series, we highlight some of the lessons that can be learned through global collaboration. Kendall and Marshall describe the creation of a global community of influence through which the voices of Indigenous women with disability can be magnified. Throughout this series, we have tried to highlight lessons that transcend countries, explore how globalization affects each of us, and identify where we are each located in this global community. As an extension of this argument, it is equally clear from these volumes that lessons can be learned from minority populations that are marginalized

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within our nations. Barnett and Barnett; DiCowden; Hickey; and Leisman clearly describe the lessons that health professionals can learn from Indigenous models of health, recognition of spirituality, and multifaith approaches to rehabilitation. Begay, Brown, and Bounds demonstrate the way in which we each see the world through our own cultural lens, cautioning us to be open to the lessons from other cultures. We need to constantly ask ourselves, “what can we learn from other contexts, other countries, other cultures, and even from history?” (see chapter by Tawakkul, Bhatty, & Yousuf for a description of the two-way nature of cross-cultural learning). Have we dealt with disability in better ways in the past? Have we learned from failures of the past, such as that described in the “journey of sanctioned injustice” (see chapter by Kelly)? So what are some of the common lessons and trends that emerge through these chapters? In dividing the chapters into three volumes, we note the arbitrary nature of the divisions—disability is an entire experience that cannot be easily divided into experiences, contexts, and responses as we have done here. In reality, these three facets interact to create a whole that is far more complex than we can readily represent in words. Our division of chapters could have been based on any number of other themes that emerged as we read them. A major observation was that several chapters describe the global shift from biomedical constructions of disability to those based in the social world. This complex shift is discussed in many other texts on disability, and only some of the complexities are described in this series. Importantly, several chapters comment on the fact that somewhere between these two extremes is a point where the biological, psychological, social, and cultural experiences come together and contribute to a holistic understanding of disability. Some chapters focus specifically on definitions of disability that are derived from these frameworks (see Crocker; Gibson; Hedlund; Pilgrim & Rogers). These chapters describe how different definitions and conceptualizations of disability translate into practices and policies that impact on people. Other chapters use social analysis or critical disability discourse analysis to explore the impact of social constructions and language on the way people with disability are experienced and experience themselves. These chapters (see Campbell; Hodgkins & Baility; Pilgrim & Rogers) are important because they challenge the way in which we think about disability and encourage us to extend our minds, rather than unquestioningly conforming to the prevailing pressures. The shift to a rights-based approach to disability (see chapters by Crocker; Kuemmel & Kuemmel; Morrissey) is another important theme. Although the social model has been a useful tool for shifting responsibility for disability from individuals to societies, some chapters comment on how this model has also denied the very real existence of physical impairment and the impact of that impairment on individuals (see Campbell; Susa; Gover). An important corollary of the rights-based approach is the fact that it moves us one step closer to an approach where difference is expected, accommodated, and celebrated. Approaches based on equality tend to assume that we need to create balance across people by ignoring or rectifying difference (i.e., through welfare systems). By definition, some individuals are seen as unequal, inadequate,

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and unacceptably different. In contrast, responses based on the principle of universality promote a model where difference is expected, celebrated, and accommodated. It is obvious from the chapters in this series that the experience, definition, acceptance, and/or rejection of a “disability identity” varies enormously across individuals and depends a great deal on the extent to which it is personally relevant or meaningful, often because it prevents participation in a desired activity (see Susa) or if it is religiously significant (see chapters by Al Attiyah & Mian; Bhatty, Moten, Tawakkul, & Amer; Gharaibeh; Tawakkul, Bhatty, & Yousef). There are also chapters that highlight how culture, or individual choice (see Stager; Yazzie-King) can create or remove disability simply through the way it is viewed. In some cases, this social interpretation of disability alters the experience of the same impairment within a given culture (see chapter by Gotto); in other cases, it simply denies the presence of real difficulties (see chapters by Ackerman & Banks; Catalano & Kendall; Salley), and in yet other cases, it creates stigma and a sense of illegitimacy (see chapters by Campbell; Cederna, Palguta, Wall, & Koch). The experience of being excluded from society is particularly relevant for people whose disability does not fit the normative views, stereotypes and definitions—for instance, people whose disability differs from what would be expected. For example, Catalano and Kendall describe the isolating experiences of young people who have had a stroke—usually considered to be an elderly person’s disability. Kampfe describes the high incidence of preventable hearing disability in elderly people that is often overlooked because it is attributed to simple age-related decline. Conceptions of disability in society are heavily influenced by discourses in the popular media, the general use of language, and social norms (see chapters by Hodgkins & Baility; Morrissey; Campbell; Sovani). It was not possible to find a consistent language for this series because the words used to describe people with disability represented an entire body of hidden meaning. Chapter authors used various forms of language to refer to people with disability. “People first” language was preferred by many because it addresses people before it acknowledges disability. Other authors preferred to use the language of “Disabled People” to acknowledge the implicit nature of disability and the fact that it is inextricably interwoven into a person’s character, in the same way as their gender, ethnicity and personality. Finally, some authors used the abbreviation PWD that is common among advocates. This language positions individuals within a collective identity that is not about deficit, but about having the power to self-advocate for change. In some sectors of the United States, it is customary to capitalize terms that refer to people with disability (i.e., People with Disability). In contrast, to capitalize words in Norwegian (i.e., Deaf) brings with it connotations of stigma (as if they were a special group). The Norwegian deaf community never spells with a capital D first, just an ordinary d to show they are ordinary people (see chapter by Hedlund). Several chapters demonstrated how people with disability are influenced by languages, discourses, and constructions. Stigma and its impact are common themes across many chapters, often created by local cultural ways of

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explaining disability as a consequence of one’s own actions, a repercussion for one’s sins or just bad luck (see Al Attiyah & Mian; Manyibe, Mamboleo, Mugoya, & Kampfe; Sovani). However, stigma is also present in countries with advanced legal and social service frameworks around disability, as demonstrated by Campbell. In negotiating such frameworks, people with disability are required to legally “prove” their disability to receive rights. Further, they must often demonstrate that they have made attempts to mitigate their “loss.” They are only deemed worthy of society’s assistance if they follow these rules (see also Gibson). McDonald’s chapter describes how young people with invisible disability respond to these unreasonable demands by obscuring their disability and “passing” themselves off as nondisabled. Other chapters described the denial of parents when they first confront disability in their child (see Bursnall, Kennedy, Senior, & Violet; Douglas & Borbasi). The Sovani chapter about people with schizophrenia in India demonstrates a language-based attempt to alter stigma. Other chapters describe ways in which service systems are responding to stigma by developing models based on wellness (see Breen & Saggers); the integration of mind, spirit, and body on a continuum of ability (see DiCowden); and person-centered planning (see Blessing, Golden, & Bruyère). Unfortunately, however, the responses of health professionals are not always helpful—throughout these chapters, there are examples of hostile systems (see Burnett; Bursnall, Kennedy, Senior, & Violet; Douglas & Borbassi; Madrid, Grant, & Rosen), inactive or unresponsive systems (see Leisman; Gibson), ill-informed systems (see Agorastou, Kalyva, Kaderoglou, & Stefanidis; Kuemmel & Kuemmel; Spirito-Dalgin, Ergene, Marrone, & Munir; Tawakkul, Bhatty, & Yousef), and actively harmful systems (see Kendall & Muenchberger). Confronting an unhelpful system is an exhausting reality in the lives of people with disabilities. Gibson, for instance, describes her relief on the one occasion when she did not need to fight the system for her rights. We have included chapters that demonstrate the helplessness and passivity that individuals sometimes experience when they confront unhelpful systems and the internalized sense of inadequacy that can result. Other chapters describe responses that seek to change systems through self-advocacy (see Koch, Beggs, & Bailey; Susa; Zuver, Dorton, Finks, & Fisher), legal mobilization, and capacity-building (see Campbell). There are stories written by people with disabilities who have become health professionals and proceeded to influence models of practice (see Barlow; Gibson; Pieper). There are also stories of health professionals who have experienced disability leading to a change in their practice (see Kendall; Susa; Morrisey). The stories about preventable disability are particularly disturbing—violence (see chapter by Ackerman & Banks), war (see Gharaibeh; Manyibe, Mamboleo, Mugoya, & Kampfe), preventable disease (see Morrissey; Sovani; Gharaibeh), accidents caused by unregulated worksites or driving conditions (see Morrissey), deliberate self-harm (see Campbell), and the neglect of an entire cultural group (see Barlow; Gotto). These chapters highlight the excessive level of unnecessary and preventable disease and injury that results in disability. With appropriate health interventions or sufficient protection of innocent citizens, this level of disability could be avoided. Natural disas-

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ters feature prominently (see chapters by Campbell; Spirito-Dalgin, Ergene, Marrone, & Munir). Our lack of preparation for such disasters and prevention of subsequent disability is senseless, particularly in areas where disasters are known to occur. However, as Madrid, Grant, and Rosen show in their chapter on the aftermath of Hurricane Katrina in the United States, poorly planned responses to natural disasters that create disability and neglect people with disability during disaster occur in the most unexpected places. Article 11 of the UN Convention on the Rights of People with Disability extends the right to life and survival to situations of emergencies. Under the convention, countries are required to ensure the protection and safety of persons with disability in situations of risk, including armed conflict, humanitarian emergencies, and natural disasters. Article 16 extends the right to freedom from torture or cruel, inhuman, or degrading treatment and from all forms of exploitation, violence, and abuse. Clearly we have a long way to go in some parts of the world, including the United States, if we are to see these rights upheld in future. Several chapters have identified the important role of health promotion, rehabilitation, and prevention for the future—in the workplace (see chapters by Blessing, Golden, & Bruyère; Buys & Randall), in schools (see Liesman), on the roads (see Morrissey), and within service systems (see DiCowden; Breen & Saggers; Parkinson). There is a fine line between respecting individuals who already have disability and promoting cure, prevention, and amelioration, which automatically places a particular type of discourse on disability (i.e., as a “harmful” state that should be removed if possible). This dilemma is faced by many people with disability when they are presented with opportunities to “remove” or reduce their disability (see chapters by Campbell; Gibson). It seems that we must seek a society that accepts diversity as a natural part of human existence and responds to that diversity in a way that acknowledges its presence and its right to be expressed at the same time as valuing human health and life, creating environments in which people can flourish and achieve their dreams (see chapter by Susa). How do we walk this fine line? Is the rights-based approach with its universal doctrine able to provide a way forward? Or does a rightsbased approach focus attention on the individual—ensuring rights but also implicitly assigning individual responsibility? Might a “collective welfare” approach (see chapter by Hedlund, Landstad, & Svensson) provide an equally promising way forward? The most common area where universal access rights have been sought is in relation to physical access. Several chapters show that even this simple universal right cannot be easily implemented or enforced (see Gharaibeh). The chapter by the Kuemmel and Kuemmel is a good illustration. These two sisters, one with a disability and one without, describe their travel experiences in parts of Europe and show how access is meaningless unless it is universally applied. They describe how autonomy was jeopardized by their inaccessible environment and noted the impact this had on both sisters. The demands placed on family members when environments are not supportive of autonomy are highlighted in several chapters. For instance, Catalano and Domalewski describe how the daughter of an elderly person loses her important role of daughter and instead becomes a case manager. Pakenham describes

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the impact on youth who care for a parent with a disability. From the perspective of the youth, this parental reliance reduces their independence and can place unrealistic expectations on them. Ackerman and Banks note that family members who become caregivers do so without adequate training and support. The role of technology in improving participation in society is highlighted by Söderström in her chapter about the “digital town square.” She describes how the internet has provided a new way of interacting for young people with disability. However, she notes that, like any other context or environment, this digital town square can exclude particular people. The Wheaton and Bertini chapter goes on to describe efforts to make technology accessible around the world. In explaining the lack of access in some countries, Kuemmel and Kuemmel observe that the collective ideals in some countries may mean that people with disability are expected to rely on family, and that family is expected to care for a member with a disability. This interesting interaction between independence and interdependence is one that emerges through several chapters, the most clearly of which is Gotto’s chapter about two young Mixe men with disability. In this chapter, Gotto describes how disability is a relational and social phenomenon. The impact of the context on disability and the important impact of disability on its context is outlined by the chapters on bullying in schools (see Liesman), foster care (see Cederna, Palguta, Wall, & Koch), and families (see Douglas & Borbasi). In contrast, Susa describes the dreams that can be achieved by people with disability when the context is right. This is also demonstrated by Gibson, Gover, and others. Several chapters highlight ways in which we are beginning to respect the personal needs and rights of individuals who have disability. Blessing, Golden, and Bruyère describe the development of person-centered planning and Bell, Henthorne, Hill, Turnball, and Zito describe the process of supporting autonomy. Several chapters outline movements in their countries to make schooling more accessible and appropriate for students with disability (see Agorastou, Kalyva, Kaderoglou, & Stefandis; Spirito-Dalgin, Ergene, Marrone, & Munir) or to build capacity among its citizens with disability (see Campbell; Sovani). What is the role of these movements in countries or populations where the intersection between poverty, race, and disability delivers a triple disadvantage? Whether in developing countries or in a minority group within the richest countries in the world, people with disability who live in poverty are confronted by an intricate web of effects—they are more likely to be exposed to risks (see chapter by McDonald, Keys, & Balcazar), they are less likely to receive treatment (see Burke & Lopez), and they are less likely to have access to healthy alternatives (see DiCowden). The chapters in this series highlight the vast differences between regions of affluence and those affected by poverty. This issue is articulated more fully by Paul Leung in his preface to the series. In conclusion, understanding disability issues that impact on people from a global perspective can contribute to the redress of health disparities and reduce marginalization caused by inappropriate services or insensitive practices.

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However, as described by Kunitz (2000), “there is no assurance that all countries will benefit equally from the global economy that has emerged since World War II” (p. 1531). Indeed, Kunitz wrote that globalization could be profoundly deleterious to the capacity of some countries to provide for all their citizens, especially people with disability. The chapters in this series have clearly identified the different capacities of countries to meet the needs of their disabled citizens, as well as cultures within countries, and, of course, individuals within cultures and local communities. Thus, although we look to globalization with optimism, we understand and respect the choice of diverse countries, communities, and individuals to make their own decisions. The chapters have highlighted the fact that not all voices are heard with the same intensity. In our introduction to this series, we lamented the fact that we were unable to represent many populations adequately. Nevertheless, our thinking in preparing these volumes was informed by voices from other places, voices that are not reproduced in these volumes, but does this type of “silent” or “secondary” representation equate to actual participation? It is clear that considerable effort is required to represent voices that are not usually heard. The assumption that globalization can equalize voices is a fallacy. Indeed, several chapters in this series comment on the unequal representation of particular populations and the methods that are being designed to give voice to silenced populations (see chapters by Campbell; Morrissey; and the many other personal narratives throughout the volumes). The narratives are particularly important to the series because they represent voices of women and men who may not otherwise publish their stories, so we may not otherwise have the opportunity to learn from their experiences. In each volume, we have combined scholarly texts with those written from personal experience, narratives that reflect reality from the perspective of those who are living with disability rather than from those who study disability. We have combined the power of personal narratives with the rigor of academic research to highlight the value of the community voice and place it on the same level as empirical and scholarly theory and professional practice. All perspectives are important. It is only through cross-fertilization that perspectives are enhanced and solutions become apparent. Indeed, the chapters in this series have identified both strengths and weaknesses in all countries—lessons to be learned in all directions. Throughout, there are strong common global messages that all people with disability seek to be valued, understood, and respected in all areas of their lives. They seek to be accepted as they are, rather than placed into stereotyped categories, judged, and asked to prove themselves. They seek to be connected to other people and to have dreams for the future. Around the world, systems are seeking to be more responsive to the needs of people with disability. Important trends are apparent in this series, including the need for systems to respond from a perspective of health rather than disease or deficit, for professionals to promote autonomy and capacity rather than to deplete natural resources and support systems, for communities to honor the relational and contextual nature of life rather than creating silos and pockets of isolation for people with disability. Given these global trends and demands, it is plausible then that global collaboration might lead to a stronger and unified voice

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for people with disability. We hope that this series goes some way toward reclaiming the globalization movement for people with disability. Perhaps if we approach the diverse global community with tolerance and respect as core values, then we may see a day when disability is a part of life, just like our gender, our height, our religion, and the color of our skin. That was one of our hopes—only time will tell, but it is an honor to have been a part of the discussion. We hope that this series becomes part of the process of finding a way forward that both respects diversity, yet contributes to the elimination of disparities.

REFERENCES Emerson, E., McConkey, R., Noonan Walsh, P., & Felce, D. (2008). Editorial: Intellectual disability in a global context. Journal of Policy and Practice in Intellectual Disabilities, 5(2), 79–80. Jong-wook, L. (2003). Global health improvement and WHO: Shaping the future. Lancet, 362, 2083–2088. Kunitz, S. J. (2000). Globalization, states, and the health of indigenous peoples. American Journal of Public Health, 90(10), 1531–1539. Leonardi, M., Bickenbach, J., Ustun, T. B., Kostanjsek, N., & Chatterji, S. (2006). The definition of disability: What is in a name? Lancet, 368, 1219–1221.


Index

Ableism, 19, 21–23, 27, 29–30; defined, 21, 23; internalized, 23–25, 27–28, 30 (see also Internalization and internalized oppression); nonrecognition of, 24 Ableness, compulsory, 27 Aboriginals, 55–61 Academic abilities, brain injury and, 115 Accessibility, 74–75, 262–63 Accidents, 67 Ackerman-Banks Neuropsychological Rehabilitation Battery (A-BNRB), 113 Adjustment, 52–53 Administrative definitions of disability, 6–7 African Americans, xvi Age, disability of, 70 AIDS, 68–69 Alertness (brain functioning), 113–14 Alexithymia, 114 American Indian families, narratives about: perspectives on, 89–98; reactions to, 88–89; themes related to the perception of disability, 98–104 American Indians, 87–88. See also Native Americans Americans with Disabilities Act of 1990 (ADA), xvi, 159; definitions of disability, xix

Annan, Kofi, xxi Antidiscrimination laws, 10. See also Discrimination Arabic disability terminology, 159–60 Arabic Sign Languages (ArSLs), 74 Arab societies, 63, 76–77; causes and prevention of disability in, 64–72; incidence of disability, 63–64; services for people with disabilities, 72–76. See also Islamic law; Muslim countries Armed conflicts, 66–67 Asymmetry (brain functioning), 115 Awareness, raising, 68 “Backward” class, 20–21 Barile, Maria, 250–51 Barrier metaphor, 221, 223 Bauman, Z., 7 Begay, Cruz, 89–91, 96 Bible, 215 Blindness and visually impairment, 73, 74, 144, 173 Bounds, Roger, 94–96, 100 Brain function and dysfunction, domains of, 113–16 Brown, Betty, 91–94, 96, 100 Burstow, B., 25 Butler, J., 23, 28, 29 Buys, N., 52

268 Campbell, F. A. K., 22 Cancer, story of surviving, 82–83; aftermath, 84–85; bone marrow transplant (BMT) and BMT ward, 83–84; diagnosis, 81–82; first symptoms, 81 Cardiovascular disabilities, 124; resilience factors in, 55–61 Carter Center Mental Health Program, ix–x Categorization, 6–7 Civil rights movement, xvi Cochlear implant, 13 Cognitive problem solving, brain injury and, 115 Colonization, 249–51 Community, x Community obligations to care for disabled people, 167–69, 174 Compulsory ableness, 27 Control/independence coping, 134 Coping, 52–53; defined, 132 Cox, Oliver Cromwell, 22 “Crackling” (Gover), 127 Criminal law, 167. See also Islamic law Critical race theory (CRT), 20–24, 29, 30 Cultural minority model, 8, 12–13 Cultural scripts and narratives of disability, 178–82, 184 Day-by-day coping, 136 Deaf community, 12–13 Deaf individuals, 169. See also Hearing loss Defensive othering, 26 Delgado, R., 20 Demos, 234 Developing countries, xvi, 263. See also specific countries Diabetes, 124–25 “Dierarchy,” 225 Difference: disabled identity positioning a positive, 224; normalcy of, 163–65 Differentially situated realities, 24 Disability Advocacy Network (DAN), 221, 222 Disability Discrimination Act of 1995 (DDA), 215, 221–23 Disability experience, minimization of, 187–88 Disability(ies): assumptions about, 170–71; categorization of, 6–7;

INDEX constructions of, 10, 92 (see also Discursive construction and invalidation of disability); context and, 263; definitions and meanings, xix, 5–7, 13–16, 71, 89, 159, 215, 221; earliest etymological reference to the term, 216; as enriching gift, 1, 3, 100–102; as human perception, 87 (see also under American Indian families); and identity, 29; negative attitudes regarding, 19; origin of the term, 216, 223; overview, xiii; perceived severity, 96–98; promoting cure, prevention, and amelioration of, 262; reconstruction of “disability,” 93; terminology, 70–72, 87, 159–60, 250; understandings of, 7–13 Disability Information Training Opportunity (DITO), 214 Disability studies, 178, 213–14 Disabled identity, 224, 260. See also Identity Disabled person(s): difficulties caring for, 102–4; duty to care for, 168, 169, 174; as gifts, 100–102; harm experienced by, 19; historical perceptions of, 161–62 (see also under American Indian families); opportunities to “remove” or reduce their disability, 262; terminology, 30n.1, 72, 250, 260; viewed as “half a person,” 224 Disablism, 21, 225, 227. See also Ableism Disclosure of disability as possessing positive attributes, 223–25 Discrimination, 237; race, ethnicity, and, xv, xvi. See also Antidiscrimination laws Discursive analytical approach, 214–15 Discursive construction and invalidation of disability, 213–14, 225–27; “his disabilities to perform his promise,” 215–18; “I use my disability, I try and make the most of it,” 223–25; raising vs. breaking barriers, 221, 223. See also under Disability(ies) Diseases: communicable, 68–70; noncommunicable, 70. See also specific diseases Dispersal strategies, 25–26 Domestic violence. See Intimate partner violence injury

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Down syndrome, 99–101 Durie, Mason, 252 Dysprosody, 114

Human rights issue, disability as, 168. See also Rights perspective Hunga haua Maori, 250–54

Early Intervention Research Institute (EIRI), 89–90 Elwan, A., xiv, xvi Emotional coping, use of, 137 Emotional processing (brain functioning), 114, 115 Emotions, organic, 115 Emulating the norm, 26–30 Ethnos, 234

Identity, 29; disabled, 224 Ignorance and lack of awareness, 68 Illiteracy, 67 Illness: disability viewed as illness that will improve, 99–100; Islamic views on, 162–63 Impairment: vs. disability, 20, 221; hierarchy of, 225 Independent living: investing in, 218–20. See also Control/ independence coping Independent Living Movement, 218, 219 India: changing social milieu in, 233–34; mental health in, 234–35 (see also Shubharthis (schizophrenics) in India) Indigenous cultures, x, 60. See also Aboriginals Information and communication technology (ICT), 263 Instrumental actions, 196–97 Integration imperative, 26 Intellectual disability. See Learning disability; Mixe of San Marcos Moctum Internalization and internalized oppression, 19, 23–25, 27–28, 184–85, 188; defined, 24 International Classification of Functioning, Disability and Health (ICF), xiii Intimate partner violence injury: assessing for, 111–13, 116; head and brain injury, 107, 109–11; nature of, 107–9; symptoms, 110–11 Islamic faith, 174–75; overview, 158–59. See also Arab societies; Muslim countries Islamic law (and disability): historical applications, 168–69; obligations on the community, 167–69, 174; rights and responsibilities of disabled people, 165–67, 174; themes in Qur’an, 163–65 Islamic views on health, illness, and disability, 162–63 Isolation after stroke, experience of, 39, 50–51; within the community, 41–42;

Facial injuries, 108 Faircloth, C. A., 37 Family difficulties, viewed as part of life, 102–4 Fasting in Islam, 166 “Five Minutes til Daylight” (Gover), 127–28 Friendships, 46. See also Reengagement following stroke Gender disparities, 172, 178 Genetic causes of disability, 64–65 Genetic screening programs, 65 Global collaboration, 257–59 Globalization movement in health arena, 257–59, 263–65 Global perspective on health and disability, 263–65 Goal-directed coping, 134 Gordon, B. O., 20 Hahn, H., 21–22 Hajj pilgrimage, 166 Hand, sudden loss of the use of a, 244–48 Hard work and discipline coping, 136 Health professionals, role of, 93–94 Hearing: environment and, 150–51; primitive level of, 146, 149; signs or warning level of, 146–47, 149–50; symbolic level of, 147–54 Hearing loss, late-onset, 143, 154; basic information about, 144–45; causes, 144; coping with functional and psychosocial aspects of, 149–54; psychosocial impact, 145–49 HIV/AIDS, 68–69 hooks, bell, 30

270 Isolation after stroke (cont’d) from social networks, 42–43; within the system, 39–40

INDEX on disability, 169; need for better statistical data on, 172; today’s challenges, 170–72. See also Arab societies; Islamic law

Jordan, 75. See also Arab societies Kendall, E., 52 Kokiri, TePuni, 254n.5 Kovel, Joel, 24 Kunitz, S. J., 257 Kuusisto, S., 27 Learning disabilities: cultural narratives of, 178–82, 184; personal narratives of, 178–80, 182, 184 Learning disability, living with a, 177–79; implications for, 186–90; psychological and behavioral responses to, 180–86 Leary, Kimberlyn, 27 Lebanon, 75. See also Arab societies Legislation, 75–76 Limb, sudden loss of the use of a, 244–48 Linge, F. R., 130–31 Linton, S., 23 “Long Division” (Gover), 126 Lord, A., 254 Lupton, T., 216 Manas-parisar, 240 Maori, 249–54 Marks, D., 19 Mason-Schrock, D., 26 Medical model of disability, 8, 9 Memory (brain functioning), 114 Mental illness, 231; myths and misconceptions about, 232; social inclusion, social quality, and, 234–36, 239–40. See also Schizophrenia Mentoring, 41 Micro-financing, xv Mixe of San Marcos Moctum, 193–96; giving service, 196–98; intellectual disability, social capital, and social personhood, 193, 198–207 Morocco, 75. See also Arab societies Muhammad, Prophet, 162–63 Multiple minority groups, 250 Muslim countries, disability in, 169–70; and the future, 172–74; integration into society, 169; medieval writers

Name-calling, 72 Native Americans, 3, 124. See also American Indians Navajo, 3, 89, 91. See also American Indian families New Zealand, 251, 252. See also Maori Ng, E., 252 Nicolaisen, Isa, 194 Nochi, M., 52 Normalcy of illness and disability, 163–65 “Normal,” finding a new, 48–50, 52 Normalization, 25 North West Frontier Province (NWFP), 171 Norway, point of intersection for definitions of disability in, 13–16 Norwegian Labor and Welfare Service (NAV), 16 Obesity, 211–12 Ontological vulnerability, 30 “Other,” discourse of, 251 Othering, defensive, 26 Overboe, J., 26 Pakistan, 171 Palestinian Law Concerning the Rights of the Disabled, 75–76 Parents, attitudes of, 98–102 Paternalism, 22 “People with disability” vs. “disabled people,” 30n.1. See also Disabled person(s) Personal discovery coping, 133–34 Personhood. See Social personhood Persons with Disabilities Act of 1995 (India), 234 Physical ability, viewed as morally irrelevant in Islam, 165 Polio, 69 Poverty, xiii–xv, 104, 170; and poor resources, 65–66 Prayer, 166 Prejudice, 237 Presbycusis, 144–45, 147–50; personal characteristics of persons with, 152–54. See also Hearing loss

INDEX Preventable disability, 261–62 Purdy, Linda, 29 Purity in Islam, 165–66 Purpose-focused coping, 134–35 Qur’an, 158–59, 163, 167; themes in, 163–65. See also Islamic law Race and ethnicity, xv–xvi. See also Critical race theory Racism, 20, 22, 24–25 Reengagement following stroke, 43; with social networks, 43–46; with work, 46–47 Rehabilitation, 216–17; defined, 216, 217 Relative model of disability, 8, 11–12 Religion, 157, 161–62. See also Islamic faith; Spirituality Resilience factors, 188; in cardiovascular and emotional disabilities, 55–61 Rights-based approach to disability, 259–60 Rights perspective, 183–84, 188. See also Human rights issue Risper-Chaim, V., 163, 166 Rosenblum, K. E., 20 Rosenwasser, P., 24 Royal Association for Disability and Rehabilitation (RADAR), 217 Saudi Disability Code, 76 Schizophrenia, 58, 60, 61; historical overview, 236; in the Indian context, 235–38 (see also Shubharthis (schizophrenics) in India); social implications, 236; terminology, 236, 238 Schwalbe, M., 26 Seeing-eye dogs, 173 Self-determination, 206 Self-discipline and hard work, coping through, 136 Sensorimotor function, brain injury and, 114 Sexual abuse, 108 Shain, A., 29 Shame, 26–27, 224–25, 235 Shubharthis (schizophrenics) in India, 231–32, 235, 239–40; historic perspective, 232–34; new directions and the future, 240–41; as “people on

271 the path to wellness,” 231, 238; social inclusion and, 234–36, 239–40. See also Schizophrenia Social attitudes toward disability, 170, 173 Social capital, 193, 197, 204, 205; “bonding” forms of, 196–98 Social construction of disability, shift from biomedical construction to, 259 Social coping, 135 Social exclusion, 260 Social inclusion, social quality, and mental illness, 234–35; unconventional methodologies in the process of inclusion (tridal model), 235, 239–40 Social model of disability, 8–11, 220–21 Social personhood, 193–95, 204 Social role valorization theory (SRV), 24 Social welfare support, 14–15. See also under Arab societies Socioecological model of disability, 178, 189 Speaker considerations and hearing, 151–52 Speech, 114, 148 Spiritual coping, 135–36 Spirituality, 1–2, 104. See also Religion Stefancic, J., 20 Stereotypes, 170–71 Stigma, 170–71, 182, 235, 237, 238, 260–61; shades of, 70–71 Strangulation, 108 Stroke, experiences of young people following, 35–37, 50–53; case material, 37–51; disability, 36; finding a new “normal,” 48–50, 52; isolation, 39–43; reengagement, 43–47 Stroke community, isolation of young people within, 41 Sudan, 76 Survivors, disabled people as, 30 Television, 74 Terrorism, disabilities resulting from, 67 TeWhare Tapa Wha, 252 Tinnitus, 153 Trachoma, 70 Traumatic brain injury (TBI), 118–19; autobiographical accounts, 131–32; as consequence of partner violence, 109–11; coping strategies, 129–33,

272

INDEX

Traumatic brain injury (TBI) (cont’d) 137–39; coping styles, 133–39; practical consequences, 116–17; treatment, 117–18; treatment problems for persons with, 116 Tribal traditions, 71–72 Tridal model, 235, 239–40 Tuberculosis (TB), 69

for Western Asia (ESCWA), 63–64, 73 Universal Islamic Declaration of Human Rights (UIDHR), 174

Union of Physically Impaired against Segregation (UPIAS), 220, 221 United Nations (UN): Convention on the Rights of Persons with Disabilities, xiii, xxi, 258, 262; Economic and Social Commission

Watt-Jones, D., 26, 27 Welfare and Rehabilitation of Disabled Persons, Act on (Sudan), 76 Welfare state, 17n.1. See also Social welfare support Wolfensberger, Wolf, 25 Workforce: reentering, 46–47

Vertigo, 145, 153 Visual impairment. See Blindness and visually impairment


Lesley Chenoweth, BSocWk, MSocWk, Ph.D., is the inaugural Professor of Social Work and Co-Director of the Griffith Abilities Research Program at Griffith University in Australia. She has more than 35 years of experience as a social work and human service practitioner and academic, 20 of these in the disability area. Lesley’s research has spanned disability issues, human services and rural communities, welfare reform, recruitment and retention in human service organizations and child welfare, social work practice, disability policy analysis, deinstitutionalization, families, violence and abuse. She is a regular consultant to government and community organizations and has served on numerous boards and committees for disability, legal, and family welfare agencies. Lesley serves on several editorial boards and is a regularly invited speaker in Australia and overseas. Jean Lau Chin, Ed.D., ABPP, is Professor and Dean of the Derner Institute of Advanced Psychological Studies at Adelphi University in Garden City, New York. Chin is also series editor for the Praeger series Psychology in Race and Ethnicity. Her prior executive management positions include Systemwide Dean, California School of Professional Psychology at Alliant International University; President, CEO Services; Regional Director, Massachusetts Behavioral Health Partnership; Executive Director, South Cove Community Health Center; and Co-Director, Thom Child Guidance Clinic. She is a licensed psychologist with almost 40 years of clinical, educational, and management experience in health and mental health services. Jean has published extensively with 10 books and over 200 presentations in the areas of cultural competence in health, education, and mental health; ethnic minority and Asian American mental health issues; and women’s issues, including

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ABOUT THE ADVISORY BOARD MEMBERS

leadership. Her most recent book is Women and Leadership: Transforming Visions and Diverse Voices (Blackwell, 2007) and an upcoming three volume set on Diversity in Mind and in Action (Praeger Press, in press). Sue Kroeger, Ed.D., is currently Director of Disability Resources at the University of Arizona. Prior to coming to Arizona in 1999, she was Director of Disability Services at the University of Minnesota for 14 years. She manages a staff of 40 full- and part-time employees that, guided by a social construction of disability, provide services to faculty, staff, and students with disabilities, assist the university in meeting its legal obligations, and provide consultation and education on designing inclusive learning and working environments. Sue received her master’s degree in rehabilitation counseling at the University of Arizona and her doctorate in human rehabilitative services at the University of Northern Colorado. Prior to coming to higher education, she worked in public and private rehabilitation. In addition to her administrative duties, Sue has presented at numerous conferences, published articles on disability and higher education, and coedited a book titled Responding to Disability Issues in Student Affairs. She has been Treasurer and President of the National Association of Higher Education and Disability. She holds adjunct faculty status in the Department of Rehabilitation, where she teaches undergraduate courses in disability studies and advises graduate students. Sue has been principal investigator for numerous federal grants and has consulted nationally and internationally. Paul Leung, Ph.D., is currently Professor in the Department of Rehabilitation, Social Work and Addictions at the University of North Texas. He has held previous academic and administrative appointments at Deakin University (Melbourne, Australia), the University of Illinois–Urbana, the University of North Carolina at Chapel Hill, and the University of Arizona. Paul’s interests have included rehabilitation and disability of persons from diverse racial/ethnic backgrounds and students with disabilities. He is a fellow of the American Psychological Association (APA) and a past president of APA’s Division of Rehabilitation Psychology (22), the National Council on Rehabilitation Education and the National Association of Multicultural Rehabilitation Concerns. He is a recipient of APA’s Division 22 Lifetime Achievement Award. Joseph E. Trimble, Ph.D., formerly a Fellow at Harvard University’s Radcliffe Institute for Advanced Study, is Professor of Psychology at Western Washington University. He has held numerous offices in the International Association for Cross-Cultural Psychology and the American Psychological Association (APA). Joseph holds Fellow status in three APA divisions. He is past President of the Society for the Psychological Study of Ethnic Minority Issues and a former council member for the Society for the Psychological Study of Social Issues. He has generated over 130 publications on cross-cultural and ethnic topics in psychology, including 17 edited and coauthored books. His recent books include the Handbook of Ethical Research with Ethnocultural Populations and Communities and Counseling across Cultures (6th ed.).


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Joseph has received numerous excellence in teaching and mentoring awards for his work in the field of ethnic and cultural psychology, including the Excellence in Teaching Award and the Paul J. Olscamp Outstanding Faculty Research Award from Western Washington University; APA’s Division 45 Lifetime Achievement Award; the Janet E. Helms Award for Mentoring and Scholarship in Professional Psychology at Teachers College, Columbia University; the Washington State Psychological Association Distinguished Psychologist Award for 2002; the Peace and Social Justice Award from APA’s Division 48; and the Distinguished Elder Award from the National Multicultural Conference and Summit in 2007.



ABOUT THE EDITORS Martha E. Banks, Ph.D., completed her training in the American Psychological Association (APA)-approved Clinical Psychology Program at the University of Rhode Island, followed by an APA-approved internship at the Des Moines Child Guidance Center. She is an APA fellow and a fellow of the Society for Women in Psychology, with membership for more than two decades. She has over 30 years of professional experience as a clinician, researcher, and professor in psychology. Martha is currently an APA Council Representative and President of the Society for the Psychology of Women, among other roles at APA. Her service to APA was recognized with a presidential citation in 2008. Martha has also been a Professor of Black Studies at The College of Wooster. In 2003, she was the recipient of the Sue Rosenberg Zalk Award for Distinguished Service. Throughout her clinical career, she has been invited to participate as a presenter at conferences and to publish. Her most recent outstanding contribution is the editorship of the book Women with Visible and Invisible Disabilities: Multiple Intersections, Multiple Issues, Multiple Therapies. Many of Martha’s professional presentations have involved the neuropsychological assessment and treatment of female victims of abuse; these presentations have reflected the coauthorship of and ongoing research involving the Ackerman-Banks Neuropsychological Rehabilitation Battery and the Post-Traumatic Brain Injury Interview and Checklist. Reva Mariah S. Gover, M.A., or Mariah, the name to which she is commonly known, was born in Sacaton, Arizona. Her mother, Juana Casillas, is from the village of Cowlic in the Sells District of the Tohono O’odham Nation. Her father, George E. Gover, a Skidi-Pawnee, was raised in Pawnee, Oklahoma.

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ABOUT THE EDITORS AND CONTRIBUTORS

Currently, Mariah, a writer and consultant, resides in Tucson, Arizona. During her two-year tenure working for the Tohono O’odham Community College as their first writing instructor, Mariah was also a member of the Tohono O’odham Nation’s Radio Task Force. As an avid writer and perpetual student, Mariah served a total of three years as a student editor for Red Ink: An American Indian Student Publication and has had her poetry published in publications such as Brooklyn Review, Cimarron Review, Salt Fork Review, as well as Sister Nations: A Native American Woman’s Anthology. Elizabeth Kendall, Ph.D., is Research Professor at the Griffith Institute of Health and Medical Research, Griffith University, and Associate Director of the Centre for National Research on Disability and Rehabilitation, at Griffith University and University of Queensland. She has a B.A. in psychology and special education and postgraduate qualifications in rehabilitation psychology. Elizabeth completed her doctorate in 1997 on adjustment following traumatic brain injury and received the Dean’s Commendation for Outstanding Ph.D. Thesis (University of Queensland). She was awarded a Medal for Excellence in Research Supervision in 1999, and all her graduate students have also received commendations for excellence. For the past 20 years, she has maintained both community/clinical practice and a research agenda in the issues faced by people with acquired disabilities or chronic conditions. She has focused on participatory methods for developing innovative service models. Elizabeth has published in over 60 international peer-reviewed journals and books and maintains an active role in the development of nongovernment organizations that address gaps in service delivery for people with disability or chronic disease. Catherine A. Marshall, Ph.D., CRC, NCC, is Research Professor in the department of Educational Psychology, Northern Arizona University, and Adjunct Professor, Centre for National Research on Disability and Rehabilitation Medicine, Griffith University, Australia. She has more than 25 juried publications. Recently, her work has focused on cancer as a chronic illness/ disability and the impact of the cancer experience on the family. In April 2007, Catherine received a Ruth L. Kirschstein National Research Service Award for Individual Senior Fellowship, funded by the Department of Health and Human Services, National Institutes of Health, National Cancer Institute to support her new work. Catherine is a Senior Scholar with the UA National Center of Excellence in Women’s Health. A Fulbright scholar who researched the needs and resources of Indigenous people with disabilities in Oaxaca, Mexico, her research in Oaxaca was also sponsored for six years by the National Institute on Disability and Rehabilitation Research. Catherine was the recipient of a 1997 National Council on Rehabilitation Education Outstanding Researcher of the Year award for research with American Indian families and chronic illness/disability. She is Founder and President of the nonprofit organization Women’s International Leadership Institute (WILI; www.wili.org), the purpose of which is to benefit low-income women seeking to improve their educational and economic status. Through WILI, Catherine participated in the coordination of the 2004 international forum Participatory


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Action Research and Indigenous Ways of Knowing in Oceania and the United States: Women as Researchers and Partners in Community-Based Disability and Rehabilitation Research.

ABOUT THE CONTRIBUTORS Rosalie J. Ackerman, Ph.D., is a clinical and research neuropsychologist in the Research and Development Division of ABackans DCP in Akron, Ohio. She has provided neuropsychological assessment, treatment, and forensic consultation for victims of intimate partner violence. Rosalie has written extensively on trauma, health care and treatment, and disabilities. She has taught graduate clinical psychology and neuropsychology at the University of North Carolina at Chapel Hill, the Pennsylvania State University, Capella University, and Alliant International University. Together with Martha Banks, she developed the Ackerman-Banks Neuropsychological Rehabilitation Battery. She is a fellow of the American Psychological Association. Mona Amer, Ph.D., is Assistant Professor of Psychology at the American University in Cairo, Egypt, and Assistant Clinical Professor in the Department of Psychiatry, Yale University School of Medicine. Within the context of health disparities, Mona is recognized internationally as a leading expert in Muslim and Arab mental health. She received the American Psychological Association’s (APA/APAGS) Award for Distinguished Graduate Student in Professional Psychology for this work, and was the sole recipient of the 2005–2007 APA postdoctoral fellowship in substance abuse and mental health services. Sid Baility is Policy and Research Officer and Community Activist at the Disability Information Training Opportunity (DITO), east London. Sid is involved with local campaigns and initiatives regarding equality, diversity, and inclusion. Fabricio E. Balcazar, Ph.D., is a Professor in the Department of Disability and Human Development at the University of Illinois in Chicago. He is Director of the Center for Capacity Building on Minorities with Disabilities Research funded by NIDRR. Fabricio is coeditor of the book titled Race, Culture and Disability: Issues in Rehabilitation Research and Practice (in press) published by James & Bartlett. Lauraine Barlow, Cert. II (Indigenous Health) is a descendant of the Mandingalpa Clan Yidiny tribe and Kulla Kulla Clan Lama Lama tribe. A product of the “dormitory era,” she struggled with parenting problems due to the “no black mother” role, as did her mother. Lauraine’s life achievements so far have been impressive. She earned an Excellence in Education award for her contribution to Queensland Peninsula-based Education. Lauraine endeavors to be an encouragement by her actions and example to all whom she has the

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privilege to meet, greet, and know. Her family has also begun walking along the road of mental illness with eldest daughter, which they endeavor to do not just with tears but with a whole lot of laughter. R. Cruz Begay, Dr.P.H., is Assistant Professor of Health Sciences at Northern Arizona University. Her research interests are in maternal and child health as well as applied, community-based research to improve health care for American Indians. She is the author of a number of publications about cultural aspects of health and Indigenous health practices. Isra Bhatty, B.A. is studying for her J.D. at Yale Law School and her M.Phil. at Oxford University. In 2006, she graduated from the University of Chicago with bachelor’s degrees in economics and near Eastern languages and civilizations. Isra’s research interests are in criminal law, disability law, and comparative Islamic law. Roger G. Bounds, Ph.D., CHES, is Assistant Professor of Health Sciences at Northern Arizona University. He is currently Area Coordinator for the Community Health Promotion Degree Program. Roger is the author of numerous publications related to physical activity and acute emergent care. Betty G. Brown, Ph.D., M.P.H., R.N., is Assistant Professor of Health Sciences at Northern Arizona University. Her research interests include children with special needs and maternal mental health, HIV/AIDS, violence and trauma, and international public health, with a focus on epidemiologic and social determinants of health. Fiona Kumari Campbell, B.Leg.St (Hons)., Ph.D., J.P (Qual), is Convenor of Disability Studies in the School of Human Services Griffith University; is Adjunct Professor in Disability Studies at the Faculty of Medicine, University of Kelaniya in Sri Lanka; and is a person with disability. She has written extensively on issues related to disability—philosophy, desire, law, and technology. Her current research relates to studies in ableism and South Asian approaches to disability. Her work has appeared in Disability & Society, M/C—Media and Culture, Disability Studies Quarterly, Australian Feminist Law Journal, and in S. Danforth and S. Gabel (Eds.), Vital Questions in Disability Studies and Education (2006). She is working on her first book, Contours of Ableism (forthcoming). In 1998, she was awarded the D. M. Myers University Medal and Jean Martin Prize in Sociology by La Trobe University for her dissertation on disability, law, and sociology. Tara Catalano, B.A. (Hons), MHuServ (Hons), has extensive practice and research experience in the area of disability and chronic illness over the past 15 years. She began her career in human services working in the community with seniors in her home town of Staten Island, New York. Following a move to Australia in the mid-1990s, she worked in collaboration with people with intellectual disability and their families for a number of years in the community sector before shifting to the university environment. She has particular


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interests in the individual and family perspective, the interaction between service users and service providers, self-management of chronic illness and acquired disabilities (e.g., acquired brain injury), peer support interventions, and partnerships between and within the health and community sectors. Numan Gharaibeh, M.D., graduated medical school in Jordan in 1990. He finished his psychiatric residency at New York Medical College, Valhalla. Numan is Principal Psychiatrist for Western Connecticut Mental Health Network. He was Assistant Clinical Professor of Psychiatry at University of Arizona, Tucson, until he took his current position in August 2006. Numan is a regular contributor to the Arab Psychiatry and Psychology Network online (Arabpsynet). George S. Gotto IV, Ph.D., is an anthropologist interested in cultural responses to disability issues. He is Research Associate at the Beach Center on Disability at the University of Kansas. George’s current research focuses on family wisdom, communities of practice, and family quality of life issues for families that include a child with a disability. Marianne Hedlund, Ph.D., is a researcher at the Department of Social Work and Health Science, Norwegian University of Science and Technology (NTNU). In addition, she holds a position as Associated Professor at Faculty of Health, Nord-Trøndelag University College, Norway. Marianne researches and teaches in various areas of disability studies, with a particular interest on how disability is understood and responded to within society. She is part of the different disability research network in Europe and Scandinavia. Huhana Hickey, LLM (Distinction), LLB/BSocSci., Ph.D., is a Solicitor admitted to the bar in 2004 and a consultant on human rights and disability issues. She is Founder for the Maori with Disabilities Discussion Group Te Hunga Haua Awhina Roopu and was recently appointed Indigenous People’s Representative to the United Nations Steering Committee for the International Disability Convention. Her research interests are disability issues, human rights and women’s rights. Stephen Lee Hodgkins, Ph.D., lectures in critical psychology and disability studies at the University of Northampton and is Director of the Disability Information Training Opportunity (DITO), a disabled persons organization in east London. Stephen has interests in community activism, critical disability studies, and discourse theory. Charlene M. Kampfe, Ph.D., is Associate Professor in Rehabilitation at the College of Education, University of Arizona. She has written extensively on aging issues and is a proponent of the connection between rehabilitation and aging. Charlene’s other research interests are transition, coping, and rehabilitation pedagogy. She has received many research, service, and teaching awards. Among her research awards are the Outstanding Research Award from Chi Sigma Iota (1991), the Outstanding Article Award from ADARA (1999),

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the Memorial Research Award from the American Counseling Association (2002), and the Best Practices Research Award from the American Counseling Association (2003). Among her service awards are the Distinguished Service Award from the Association for Adult Development and Aging (1995), the Outstanding Member Award from the Arizona Counselors Association (1998), and the Sarah Folsom Memorial Award from the Arizona Rehabilitation Association (1998). In 2007, the Charlene M. Kampfe Student Fund was officially designated by the American Rehabilitation Counseling Association. In 2008, Dr. Kampfe received the Rehabilitation Educator of the Year Award from the National Council on Rehabilitation Education. Melissa Kendall, Ph.D., B. Sc. (Psych), Grad. Dip. App. Sci (Prof. Psych), MHumSrv, is Research and Development Officer for the Transitional Rehabilitation Program (Queensland Spinal Cord Injuries Service) and the Acquired Brain Injury Outreach Service, both state-funded community rehabilitation services for people with spinal cord injury and acquired brain injury, respectively. She is also a doctoral candidate with the School of Human Services, Griffith University. Melissa has an emerging publication record on rehabilitation and disability-related topics and has research interests in the areas of long-term care needs, friendship, and social support following injury. Christopher B. Keys, Ph.D., is Professor and former Chair of the Psychology Department at DePaul University, Professor of Disability and Human Development and Professor Emeritus and former Chair of the Psychology Department at the University of Illinois at Chicago. He is a fellow of the American Psychological Association, past President of the Society for Community Research and Action (SCRA), and the 2008 recipient of the SCRA Award for Distinguished Contribution to Theory and Research in Community Psychology. Christopher is interested in the empowerment of people with disabilities and their families. With their publications concerning theory, research, and interventions concerning the positive community psychology of people with disabilities, he and his colleagues have helped introduce community psychology and disability to one another as complementary fields of study. He served on the senior editorial board for the Encyclopaedia of Disability. Chris has lectured on his research in Asia, Europe, Latin America, and Australia. Katherine E. McDonald, Ph.D., is Assistant Professor in the Department of Psychology at Portland State University. She received her B.S. with distinction in Human Development and Family Studies from Cornell University and her Ph.D. in Community and Prevention Research Psychology from the University of Illinois, Chicago. Her research is focused on economic and health disparities experienced by individuals with disabilities, and the ethics of science. She is Chair of the Disability Action Group for the Society for Community Research and Action, Division 27 of the American Psychological Association, and a member of the board of directors at L’Arche Nahalem and the Arc of Multnomah-Clackamas County. Katherine received the StevensShapiro Fellowship from the International Association for the Scientific Study of Intellectual Disabilities and was an Internatinoal Visiting Fellow at


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the University of Western Sydney in Australia. Prior to becoming a disabilityfocused researcher, Katherine lived in a community with individuals with and without intellectual disabilities in a community of L’Arche in Switzerland. Asad Ali Moten, MPH, has provided qualitative research support for various organizations in Canada and the United States. He is currently pursuing research interests at the intersection of artistic expression and public health, specifically focusing on photography as a voice for social justice. Asad obtained his B.S. from McMaster University in Hamilton, and his M.P.H. from Drexel University in Philadelphia in 2007. Heidi Muenchberger, Ph.D., M.Psych. (Neuro), B.Beh.Sc. (Hons), is a Senior Research Fellow at the Research Centre for Clinical Practice Innovation, Griffith University, and has worked in the area of neurorehabilitation for the past 15 years. As a clinical neuropsychologist, she has primarily worked with people who have experienced a life-changing neurological disorder. Her Ph.D. examined the evidence base for rehabilitation to improve outcomes following work injury. Her research to date has concentrated on the impact of injury for individuals and their families. This work has informed her current research, which aims to investigate the broader rehabilitation and disability context and interagency partnerships to improve the management of serious injury and chronic disease. Michelle Pieper has a Certificate 3 in Indigenous Primary Health Care and is currently studying for a Diploma in Mental Health (nonclinical). Describing a family heritage of health providers, she wrote, “My grandmother was born under a tree on a mission called Purga and our tribal name is the Wakka Wakka tribe. I remember the stories grandma used to tell us around the fire or when it was bedtime of how she was a part of the stolen generation and how she made her way back home again. Being very medically minded must run in the family as my grandmother was a psychiatric nurse, as was my mother and her brother.” Michelle lives near Brisbane, Queensland, Australia. Bernadette Blount Salley, M.M., is a composer, performer, educator, and musical clinician with international experience. She received her B.S. in music education from Hampton Institute, Virginia, and her M.M. with emphasis in music education from the University of Akron, Ohio. Bernadette’s original compositions and arrangements have been published in the African-American Heritage Hymnal and the Church of God’s Worship the Lord Hymnal. In February 2008, she served as Assistant Chorus Master and principal accompanist for the awardwinning Gospel Meets Symphony 15th Anniversary Concert. In addition, Bernadette was the Music Consultant for Camp Promise 2008, a camp sponsored by Visiting Nurse Service of Hospice (Akron, Ohio) to help bereaved children. She lives in Stow, Ohio, with her husband, John, and their two children. Anuradha Sovani, M.Phil., Ph.D., is a full-time faculty member at the Department of Applied Psychology, University of Mumbai, and Consulting Clinical Psychologist and Trustee at the Institute for Psychological Health,

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Thane, Maharashtra. She has various publications to her credit in national and international journals and has presented her work at the national and international conferences on schizophrenia (ICoNS I, II, & III). Anuradha has been a research collaborator with psychologists from the United States and the United Kingdom. She has completed a large funded project on treatment-resistant schizophrenia sponsored by the University Grants Commission. Anuradha is a member of the State Mental Health Authority of Maharashtra State and a recognized rehabilitation psychologist with certification from the Rehabilitation Council of India. She has been the recipient of various awards and fellowships, including the Chancellor’s Gold Medal and the Mankar Silver Medal. Anuradha has worked as consultant on a number of projects in the field of inclusion funded by UNICEF and CIDA. Paige Stager, RN, recently celebrated 16 years in remission from leukemia and is a registered nurse in Minnesota where she lives with her husband and their 4-year-old daughter. She frequently visits with newly diagnosed cancer patients to offer encouragement and to help demystify the treatment process. Mobin Tawakkul, M.Eng., is currently Board Member and Vice President of a U.S. nonprofit organization called the Association of Muslim Health Professionals (AMHP). He received his bachelor’s degree in chemical engineering and master’s degree in pharmaceutical engineering from the University of Michigan in 2002 and 2003, respectively. Mobin helped form and chair the Disability Needs and Awareness Working Group (DNA-WG) Committee for AMHP. His research interests include investigating novel accessibility solutions available in American society that can educate and empower the American Muslim community to serve and assist those with disabilities. Ela Yazzie-King, B.A., M.A., is a member of the Navajo Nation and resides on the Navajo Reservation in St. Michaels, Arizona. She has a physical disability due to a car accident when she was two years old. She was appointed by President Bill Clinton to the National Council on Disability and confirmed by the U.S. Senate on April 6, 1995. This made her the first Native American to be appointed to this national council. Ela has been instrumental in working with the Native American disability communities and helped create the Native American Protection and Advocacy program. Her undergraduate degree is in psychology/sociology from Virginia Intermont College, Bristol, Virginia, and her graduate degree is in rehabilitation counseling from the University of New Mexico, Albuquerque.

Disabilities



Volume 2 The Context: Environmental, Social, and Cultural Considerations Edited by CATHERINE A. MARSHALL, ELIZABETH KENDALL, MARTHA E. BANKS, AND REVA MARIAH S. GOVER Foreword by Thomas Bornemann




Contents


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Preface Paul Leung

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Introduction

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Chapter 1.

Creating Mental Health Disability through Inadequate Disaster Response: Lessons from Hurricane Katrina Paula A. Madrid, Roy Grant, and Rachel Rosen

Chapter 2.

Autonomy and Disability: A Quest for Quality of Life Bedarius Bell Jr., Shelley R. Henthorne, Doris Adams Hill, Jane W. Turnbull-Humphries, and Stephanie T. Zito

Chapter 3.

Children Who Care for Their Parents: The Impact of Parental Disability on Young Lives Kenneth I. Pakenham

Chapter 4.

The Digital Town Square: Information and Communication Technology as an Opportunity and a Barrier to Social Relations for Disabled Youth Sylvia Söderström

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Chapter 5.

Chapter 6.

Chapter 7.

Chapter 8.

Chapter 9.

CONTENTS

Understanding the Experience of Parenting a Child with Autism Samantha Bursnall, Eilis Kennedy, Rob Senior, and Jo Violet Through My Rose-Colored Glasses: When Disability Strikes a Health Professional Melissa Kendall

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Australian Indigenous Health and the SIPES Model of Well-Being: The Legacy of Lauraine Barlow Leda Barnett and Dianne Barnett

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“Surely Someone Can Support Me”: A Caregiver’s Perspective Tara Catalano and Debra Domalewski

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Navigating Societal Norms: The Psychological Implications of Living in the United States with Disability Jennifer Gibson

Chapter 10. Disabilities and Employment in the United States, Kenya, and the Philippines: A Race and Class Perspective Elaine A. Burke and Patricia Denise Lopez Chapter 11. Youth with Intellectual Disabilities in Foster Care: Examining Accompanying Risks and Service Outcomes Crystal L. Cederna, Melissa Palguta, Jacqueline Remondet Wall, and Steven M. Koch Chapter 12. Mental Disorder, Disability, and Society David Pilgrim and Anne Rogers Chapter 13. Parental Perspectives on Disability: The Story of Sam, Anna, and Marcus Heather Douglas and Sally Borbasi Chapter 14. Bullying of Children with Developmental Disabilities: An Ecological Approach to Program Development Rocky Liesman Chapter 15. Mosaic Reflections of American Muslims on Disability: Challenges and Solutions Mobin Tawakkul, Isra Bhatty, and Mohammed Yousuf Chapter 16. Voices of People with Disabilities (PWD) in Vietnam David N. Morrissey

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Chapter 17. Substance Use Disorders and Disability: An Examination of Co-occurring Disorders in Nigeria Stephanie L. Lusk and Teresia M. Paul

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Chapter 18. Chasing Your Dreams Connie Susa

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FOREWORD

The program does this via strategies such as the annual Rosalynn Carter Symposium on Mental Health, which brings together diverse and multidisciplinary mental health care professionals, government agencies, consumer groups, and advocacy organizations (Palpant, Steimnitz, Bornemann, & Hawkins, 2006). One chapter in these volumes, authored by Paula Madrid and colleagues, addresses how depression and psychological distress can be created within the context of response (or lack thereof) to a national disaster. The editors tapped Madrid’s expertise based on the presentation of her work during the 22nd Annual Rosalynn Carter Symposium on Mental Health Policy, “Disaster Mental Health in the Wake of Hurricane Katrina,” in 2006. The editors first came together during the forum “Participatory Action Research and Indigenous Ways of Knowing: Women as Researchers and Partners in Community-Based Disability and Rehabilitation Research,” held in Honolulu, Hawai’i, in 2004. Over 30 Indigenous and non-Indigenous women from the United States and the Asia-Pacific region participated in this forum, including a member of the Carter Center Mental Health Task Force. Attendees were women with and without disabilities, researchers, grassroots community members, and community activists. The purpose of the forum was to engage a global community in articulating and redressing disparities in accessing health care and human services via culturally appropriate research methods and networking—networking that would support action outcomes taking place within local communities. The stories of some of the participants formed the underpinnings of these volumes. In a preliminary conversation about this forum in 2003, I suggested that understanding Indigenous issues and disability might have implications for world peace. One of the more interesting undercurrents that drove the forum in Hawai’i was the question of community and the various levels one’s community can encompass. Can community really exist at an international level? The Indigenous women at the forum certainly comprised one community. All participants, all Indigenous and non-Indigenous women, motivated and perhaps personally shaped by chronic illness and disability, comprised another level of community. It is important that we recognize our relationships to one another in these various levels of community, whether they are explicit or more subtle. These relationships are fluid but can be surprisingly strong. The Carter Center representative, Ethleen Iron Cloud-Two Dogs, concluded that support for such efforts “can potentially lead to greater workforce development, self-sustenance, and greater health and productivity for Indigenous women with disabilities, their families, and communities.” Surely that is a key component for world peace. Community is built of multiple layers of identity, interaction, and understanding. Where community begins with the world—with global networking and international collaborations—our work, whether it be understanding disability, supporting disability, or finding resources that address disability, continues in the towns, villages, streets, and suburbs where people with disabilities and their families reside. These volumes began with a few women who wanted to share lessons learned by reaching out to other countries and the world’s Indigenous people who had chronic conditions or disabilities— a relatively small number of people given the global population. Yet such a

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model of interaction can add to our understanding of cultural differences and cultural similarities, highlight the role such understanding can play in reducing health and economic disparities, increase international respect for one another, and set the stage for more effective local intervention. The publication of these volumes is a step forward as part of a movement that can lead to a better understanding of those who are different from us, a movement that can contribute to world peace.

REFERENCES Marshall, C. A., Burross, H. L., Gotto, G., McAllan, L., Vásquez Martínez, P., García Juárez, et al. (2004). The United States and Mexico: Creating partnerships in rehabilitation. Rehabilitation Psychology, 49(1), 14–20. Palpant, R. G., Steimnitz, R., Bornemann, T. H., & Hawkins, K. (2006). The Carter Center Mental Health Program: Addressing the public health crisis in the field of mental health through policy change and stigma reduction. Preventing Chronic Disease, 3(2):A62. Retrieved from www.cdc.gov/PCD/issues/2006/ apr/05_0175.htm. Thomas Bornemann Director, Mental Health Program, The Carter Center


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REFERENCES Banks, M. E., & Marshall, C. (2004). Beyond the “triple-whammy”: Social class as a factor in discrimination against persons with disabilities. In J. L. Chin (Ed.), The psychology of prejudice and discrimination: Combating prejudice and all forms of discrimination. Volume 4: Disability, religion, physique, and other traits (pp. 95–110). Westport, CT: Praeger. Chen, I. (2006). Jeffrey Sachs stresses economics to reduce poverty. Brown Daily Herald. Reprinted in Poverty News Blog, retrieved from povertynewsblog .blogspot.com/2006/12/jeffrey-sachs-stresses-economics-to.html. Department of Health and Human Services. (2008). Poverty guidelines. Retrieved July 18, 2008, from aspe.hhs.gov/poverty/08poverty.shtml. Disler, P. (2008). Tertiary prevention: Rehabilitation in the management of chronic disease. Retrieved July 18, 2008 from www.pictureit.co.il/jerusalemconf/Media/ tuesdayhall1/peter%20disler.pps#12. Elwan, A. (1999). Poverty and disability, a survey of the literature. World Bank Social Protection Discussion Paper. Washington, DC: Work Bank. Leung, P., Marshall, C., & Wilson, K. (2007). Rehabilitation research from a multicultural perspective. In P. Leung, C. Flowers, W. Talley, & P. Sanderson (Eds.), Multicultural issues in rehabilitation and allied health (pp. 240–265). Linn Creek, MO: Aspen Professional Services. Marshall, C. (2006). SES factors influencing the definition of disability. Presented at the American Psychological Association Annual Convention, New Orleans, LA. National Council on Disability. (1993). Meeting the unique needs of minorities with disabilities: A report to the president and the Congress. Washington, DC: Author. Ottenbacher, K. J., Campbell, J., Kuo, Y., Deutsch, A., Ostir, G., & Granger, C. (2008). Racial and ethnic differences in postacute rehabilitation outcomes after stroke in the United States. Stroke, 39, 1514–1519. Sheeran, J. (2008). The silent tsunami. Economist, 13. Sum, A., Khatiwada, I., & Palma, S. (2006) The links between poverty and disability. Commonwealth Corporation Research and Evaluation Brief, 4(6), 1–4. United Nations. (2007). The millennium development goals report. Retrieved July 30, 2008, from www.un.org/millenniumgoals/docs/UNSD_MDG_Report_ 2007e.pdf. United Nations Convention on Rights of Persons with Disabilities. (2006). Retrieved July 18, 2008, from www.un.org/disabilities/default.asp?id=260. Vernon, A. (1997). Fighting two different battles: Unity is preferable to enmity. In L. Barton & M. Oliver (Eds.), Disability studies: Past present and future (pp. 255–262). Leeds: Disability Press. Retrieved August 11, 2008, from www.leeds .ac.uk/disability-studies/archiveuk/vernon/chapter17.pdf.

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Wilson, K. B., & Senices, J. (2005). Exploring the vocational rehabilitation acceptance rates of Hispanics and non-Hispanics in the United States. Journal of Counseling and Development, 83(1), 86–96. World Bank. (2002). Disability and poverty reduction strategies. Retrieved August 20, 2008, from web.worldbank.org/WBSITE/EXTERNAL/TOPICS/ EXTSOCIALPROTECTION/EXTDISABILITY/0,,contentMDK:201937 83~menuPK:419389~pagePK:148956~piPK:216618~theSitePK:282699,00 .html. Yang, S. (2006). New study links higher income with lower disability rates. Retrieved December 5, 2007, from http://www.berkeley.edu/media/releases/2006/08/ 16_disability. Zakaria, F. (2008, May 12). The rise of the rest. Newsweek.

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CHAPTER 1

Creating Mental Health Disability through Inadequate Disaster Response: Lessons from Hurricane Katrina Paula A. Madrid, Roy Grant, and Rachel Rosen

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n this chapter, we discuss the widespread and long-term psychosocial impact of Hurricane Katrina in New Orleans in 2006. By exploring the impact of this devastating event, we show how an inefficient and inadequate government response to community disasters can needlessly create psychological disability. The states most affected by Hurricane Katrina—Louisiana and Mississippi—had the worst health and school performance indicators in the United States prior to the storm (Annie E. Casey Foundation, 2008). These states already had an inadequate supply of medical and mental health professionals, especially in the highest risk communities, leaving them ill-prepared for the devastating impact of Katrina. However, in the years following Katrina, these already disadvantaged communities have demonstrated an alarming increase in new-onset depression, anxiety, and other emotional, behavioral, and school-related problems among children. Two weeks following the hurricane, the first author began a clinical appointment in Mississippi and Louisiana. This chapter builds on the accounts of ongoing desperation and mental health deterioration heard by the first author during this time. The vignettes presented illustrate the profound psychosocial needs and mental health distress we encountered in the aftermath of Hurricane Katrina. Although much of this illness could be attributed to the impact of a serious natural disaster, here we show how the inadequate response of disaster services played a critical role in exacerbating mental health disability. Hurricane Katrina has been called the greatest disaster in the United States in nearly a century, displacing more than 400,000 people in the New Orleans area and the Gulf Coast of Mississippi (Whoriskey, 2006). Whole

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THE CONTEXT: ENVIRONMENTAL, SOCIAL, AND CULTURAL CONSIDERATIONS

communities were wiped out; families were uprooted, homes were destroyed, jobs and schools were lost. The devastation caused by the disaster, including the destruction of the region’s health care infrastructure, was unprecedented in our history. The damage wreaked by the storm aggravated the existing lack of infrastructure and inadequate resources in the region. In the immediate aftermath in New Orleans, over 1,100 people were killed. More than 215,000 homes were destroyed, 785,000 people were displaced, 835 schools were damaged, and 18,700 businesses were destroyed, with more than 220,000 jobs lost (Louisiana Recovery Authority, 2006). Entire families were lacking housing and stable schools for their children and were desperate to return to their homes or find loved ones.

DISASTERS AND MENTAL HEALTH In the wake of natural disasters, mental illness has been documented at rates up to 40 percent higher than typical (Galea et al., 2007). It is generally accepted that posttraumatic stress symptoms emerge relatively soon after a disaster or traumatic event and dissipate during the first year after the disaster (Harrison, 2007; Noji & Sivertson, 1987). It can also be expected that some people with existing symptoms not only will continue to have symptoms but their conditions might be exacerbated by further trauma. Those who appear to recover after the disaster may later experience a recurrence of symptoms (Andrews, Brewin, Philpott, & Stewart, 2007). Sometimes symptoms may be delayed in onset, meaning that they will display no signs of distress in the first three months posttrauma (Carty, O’Donnell, & Creamer, 2006). However, as described by Redlener (2006), the impact of Katrina and the subsequent hurricane, Rita, on the mental health of the community, was unprecedented: Four months after Hurricanes Katrina and Rita, evidence had begun to emerge of a situation that few could have imagined and virtually no one had predicted. Nearly 80,000 people, mostly poor, who had been evacuated from New Orleans were still languishing in federally subsidized shelters, including trailers, mobile homes, and hotels throughout the United States. . . . A chaplain I met told me that he had never seen anything like this. . . . He said, “I have spoken to many of the young men who are begging for someone to talk to. They are overly depressed and have no idea of what the future holds. . . . It’s just unbearable.” (p. 12)

Psychological distress has proven one of the most enduring of Hurricane Katrina’s effects. For instance, the U.S. Centers for Disease Control and Prevention (CDC) found that six months after the hurricane, 13 percent of households had at least one family member with a new-onset mental health problem (Madrid et al., 2008). An astounding 68 percent of the female caregivers surveyed from a group of 665 randomly selected adults who had lost their homes and were living with their families in Federal Emergency Management Agency (FEMA)-subsidized trailers or hotels six months after the hurricane reported symptoms of depression, anxiety, or another psychiatric

CREATING MENTAL HEALTH DISABILITY THROUGH INADEQUATE DISASTER RESPONSE

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disorder. Their children were two and a half times more likely to have psychological issues than children of their counterparts who displayed low levels of mental health problems, illustrating the impact of a caregiver’s mental health on that of her children in this postdisaster environment (Abramson & Garfield, 2006; Weisler, Barbee, & Townsend, 2006). Five to seven months after the hurricane, another group of researchers surveyed adults who were living in communities in Alabama, Mississippi, and Louisiana deemed by FEMA as directly impacted by Katrina. The researchers measured for various psychological disorders, most notably posttraumatic stress disorder (PTSD). The prevalence of PTSD alone within the full sample was estimated at 16.3 percent, and in the New Orleans metro area the rate was estimated at 30.3 percent (Galea et al., 2007). One year after the hurricane, 62 percent of parents and other caregivers in families dislocated by the hurricane and in transitional housing in Mississippi reported symptoms consistent with psychiatric diagnoses of anxiety, depression, or PTSD (Abramson, Garfield, & Redlener, 2007). The Hurricane Katrina Advisory Group followed the mental health of 815 prehurricane residents, and found that prevalence rates of PTSD, suicidality, and anxiety-mood disorders increased during the year following Katrina: PTSD from 14.9 percent (five months post-Katrina) to 20.9 percent (one year post-Katrina), serious mental illness from 10.9 percent to 14.9 percent, suicidal ideation from 2.8 percent to 6.4 percent, and suicide plans from 1.0 percent to 2.5 percent. The increase in these rates was due largely to “unresolved hurricane-related stresses,” with 89.2 percent of the serious mental illness, 31.9 percent of PTSD, and 61.6 percent of suicidality present in this cohort caused by the hurricane. These changes are indicative of the deleterious effect of the storm on mental health (Kessler et al., 2008).

CASE VIGNETTES John Before the storms, John was an 11-year-old high-achieving student who was well adjusted in his interpersonal relationships. He spent the first night after Hurricane Katrina with his mother on a bridge near his home, where, in the high waters that followed the breach of the levees in New Orleans, he witnessed dead bodies floating by as he tried to sleep. For the next five days, he and his mother found shelter in the New Orleans Superdome, where he witnessed people using IV drugs and was exposed to incidents of violence. Conditions in the Superdome were chaotic: a 50-foot by 10-foot hole was torn in the roof, there was no running water at all, sewage was everywhere, garbage was piled two stories high, and the shelter population grew to at least 25,000 (Jenkins, 2006). After a short stay at the Superdome, John and his mother were placed by FEMA in a short-term shelter. Several weeks later, the family was again moved by FEMA into a trailer in front of their destroyed home in a devastated neighborhood. At this time, John was able to resume school. Also about this time, he presented symptoms of a serious anxiety disorder. Although his symptoms improved over time, more than a year later,

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when the city of New Orleans was celebrating the return of their home team, the Saints, to play at the Superdome, John’s anxiety symptoms returned suddenly and his school work suffered.

Dolores Dolores, age 60, had raised her 6-year-old grandson, Richard, since he was a baby. Prior to the hurricanes, Dolores had been receiving psychiatric care for depression and psychosis and was prescribed a psychotropic medication. After Katrina, she and her grandson were placed in a FEMA shelter in Baton Rouge, where psychiatric care was not available. Dolores’ highest priority was finding permanent housing so she could have a safe home for Richard. She was unable to contact her own psychiatrist, and she attempted to use the public mental health system but was unable to access appointments because of the lack of transport from the geographically isolated location of the shelter. Eventually, she was psychiatrically hospitalized. By this time, she had been without her medication or psychosocial intervention for a full year. Due to the lack of resources, Dolores was discharged quickly with only short-term plans for psychiatric care. These case vignettes were modified from actual events to protect the privacy of those involved. They illustrate the profound impact of the hurricane on the lives and mental health of residents and demonstrate how the impact of Katrina was exacerbated by the protracted difficulty the public health and mental health infrastructure had in accommodating the predictable level of need among those who remained or returned to the New Orleans area and those who were relocated to temporary shelters. Katrina represented a complex mix of factors that intensified its impact on mental health disability. The region was already significantly disadvantaged and poorly serviced, with high rates of illness or disability and large groups of marginalized people. However, due to inadequate emergency planning and poor preparation for disasters of this magnitude, the recovery and rebuilding process was protracted, postacute services were overloaded, and people became disconnected from their support systems for excessive periods of time. Each of these issues is discussed further next.

THE GULF COAST: A REGION OF DISADVANTAGE In discussing the creation of mental health disability following the disaster, it is critical to discuss the predisaster social and economic status of those affected and how this status places them at elevated risk for adverse postdisaster stress reactions (Norris, 2007; Norris et al., 2002; Norris, Friedman, & Watson, 2002). The storm laid bare the problems that had been endemic in the Gulf region for some time. Even prior to Katrina, almost 20 percent of 12th-graders enrolled in Louisiana schools from 2004 to 2005 dropped out prior to graduation (Louisiana Department of Education, 2005). Of the 39,407 families with children under the age of 18 living in New Orleans in


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2004, it was estimated that 20,626 (over 50 percent) of these were single mother–headed households (U.S. Census Bureau, 2004). In 2004, Mississippi and Louisiana were among the states with the highest rates of unemployment (ranked 6th and 10th, respectively) and general poverty (17.7 percent and 17 percent, respectively, compared with the national average of 12.4 percent) (U.S. Census Bureau of Labor Statistics, 2004; U.S. Census Bureau, Housing and Household Economic Statistics Division, 2004). Additionally, 4,467 violent crimes were reported in the city of New Orleans, representing a staggering rate of a 948.3 violent crimes per 100,000 population, compared to the national rate of 463.2 per 100,000 (Federal Bureau of Investigation, 2004). Given the high level of susceptibility that was prevalent in the region, it should have been imperative that additional resources were devoted to the management of mental health in the aftermath of the disaster. Nonetheless, surveys conducted in the temporary shelters immediately following Hurricane Katrina found in need a disproportionate representation of African Americans, people with very low income, and those without adequate means of transportation (which led to their inability to evacuate in a timely fashion). Nearly 90,000 people with health insurance provided by the state of Louisiana were evacuated to other states, which led to considerable confusion about how their coverage would be maintained and how their health care needs would be met. Most affected by the loss of public health insurance and health services were those who were elderly, chronically ill, and disabled (Rudowitz, Rowland, & Shartzer, 2006). More than 2,500 hospital patients in one county, Orleans Parish, were evacuated. Dialysis centers throughout Louisiana, each of which had caseloads in excess of 3,000 patients, were destroyed. Weeks after the disaster, the whereabouts of half these people remained unknown (Zuckerman & Coughlin, 2006). Medical records were lost, and many doctors in private practice had to evacuate and did not return. During the first year after Hurricane Katrina, the New Orleans death rate increased by nearly 50 percent (Stoddard, 2007).

DEPLETED HEALTH SERVICES This complex mix of poverty, race, and preexisting illness was complicated even further by the lack of services in the regions and in the areas to which people were evacuated. The extent of the damage to New Orleans’ health infrastructure was profound. According to the director of the New Orleans Health Department, the public health workforce for the city was cut in half after the storm. Professionals who provided assistance to disaster victims were, more often than not, themselves victims of the disaster. It was estimated that 70 to 80 percent of helpers had also lost their homes and were living in transitional housing (Osofsky, 2007). A report by the U.S. Government Accountability Office (2006) noted that the city’s hospital bed capacity was reduced by 80 percent. The only Level I trauma center available to this area was closed, as were nearly all facilities for uninsured and low-income people, clinics, and hospital emergency rooms.

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Community health centers, a critical element of the health and mental health safety net for the poor and uninsured, suffered $65 million in damage. This has had a direct impact on the continued restricted access to health and mental health care by those most in need of services (Lambrew & Shalala, 2006). For instance, when health facilities eventually reopened, it was at a significantly reduced capacity (U.S. Government Accountability Office, 2006). A 2006 survey found that 23 percent of individuals who had a psychiatric disorder prior to Katrina still reported receiving no or restricted mental health services. In situations of inadequate access to mental health services, postdisaster psychological distress can be exacerbated. Indeed, nearly 19 percent of those who met the diagnostic criteria for a psychiatric disorder in 2006 had not had a disorder prior to Katrina (Wang et al., 2008). For several years following Katrina, the Gulf Coast continued to experience a situation of increased need with decreased resources. This need and demand for mental health services for those impacted by the hurricane is likely to be present for many years to come (Madrid & Grant, 2008).

SOCIAL DISCONNECTION For those who remained or returned to Louisiana, transitional housing (shelters) was provided by FEMA. These shelters typically consisted of travel trailers and at their peak housed up to 70,000 families who had no other choice but to remain in circumstances that were deemed by many as unlivable (Harrison, 2007). The trailers were clustered in FEMA trailer parks, which were usually located in isolated areas, geographically distant from shops, devoid of safe play opportunities for children, and crime-ridden (Aldrich, 2006). Renaissance Village was an isolated trailer park that opened its doors to evacuees on October 6, 2005 (Singer, 2006). Located on the outskirts of Baton Rouge, the village consisted of 573 travel trailers surrounded by a 12-foot steel fence and guarded by private security officers, many of whom were former military personnel. In many of these trailer parks, the situation became so dire that it was likened to the humanitarian crises more commonly found in the developing world (Nieburg, Waldman, & Krumm, 2005). Four months after Katrina, approximately 80,000 people were still living in federally subsidized shelters including trailers, mobile homes, and hotels throughout the United States (Redlener, 2006). Almost two months post-Katrina, the first author found children and adults with preexisting mental health conditions who had been unable to reconnect with their previous mental health care providers. Children are particularly vulnerable to trauma, stress, and the repercussions of disasters when social systems break down, leaving them disconnected from the support of those who care for them. School attendance is also critical in maintaining the daily routine and stability of children old enough to attend; educational services were catastrophically disrupted by Hurricane Katrina. The U.S. Department of Education estimates that 372,000 children and their families were displaced by the hurricane and relocated. The children enrolled in new schools across 49 states plus the District of Columbia.


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Nine states enrolled more than 1,000 displaced students (U.S. Department of Education, 2005). Nearly two years after the hurricane, 31.5 percent of displaced children from Louisiana and Mississippi met criteria for a diagnosis of depression, anxiety, or a behavior disorder (Abramson, Redlener, Stehling-Ariza, & Fuller, 2007). Many of the school-age children who remained in Louisiana were moved from school to school. By the end of the school year, approximately 10,000 of the 61,000 displaced school-age children who remained in Louisiana were not enrolled in school. Two and a half years after the hurricane, between 46,000 and 64,000 children remained at risk because of their continued displacement and the uncertainty of their immediate future. Even those children who returned to their homes were also at risk because of the quality of the housing to which they returned, including unsafe communities and continued inadequate access to health and mental health care. More than half (55 percent) of the 55,000 displaced children in Louisiana and nearly half (47 percent) in Mississippi experienced a decline in academic achievement; lost access to health care because of either geographic access problems or economic ones, such as loss of health insurance; or developed a psychiatric disorder, principally depression, anxiety, and behavior disorders (Abramson, Redlener, et al., 2007).

PROTRACTED RECOVERY AND RETRAUMATIZATION Redlener (2006) described how, as late as seven months after the hurricane, the most devastated communities of New Orleans remained as destroyed as the day the floodwaters had retreated. This protracted exposure to the traumatic stimuli associated with the disaster—including markings on buildings indicating when they were searched for dead bodies and how many cadavers were found there—made recovery difficult if not impossible for people whose lives were already devastated by the storm. Events that reawaken memories of the traumatic event are associated with the continuation of posttraumatic stress symptoms. People with a history of trauma and loss are at greater risk for recurring anxiety, problems sleeping and concentrating, and anger and other behavioral manifestations postdisaster (Madrid & Grant, 2008). For example, in Oklahoma City, a site of domestic terrorism in the United States, issues arose or were reawakened when trials for the perpetrators began three years after the bombing (Pfefferbaum, Call, & Sconzo, 1999). Children were exposed to extensive television and other media coverage of the Oklahoma City bombings, resulting in geographically widespread psychological impact characterized by posttraumatic stress symptoms or “posttraumatic distress” (Pfefferbaum et al., 2003). Although this phenomenon occurred prior to the World Trade Center attack of September 11, 2001, there was no attempt to prevent the continual broadcasting of the plane crashing into the second World Trade Center tower and its collapse. Though viewing a disaster or other traumatic event on television does not constitute exposure in terms of a clinical diagnosis (Pfefferbaum, Pfefferbaum, North, & Neas, 2002), it nonetheless adds to the experience

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of stress and may be especially disturbing for young children because of their cognitive and developmental level. Similarly, the extremely slow pace of recovery following Hurricane Katrina meant that residents were continually exposed to the trauma of the original event. For instance, on a highway near the city, the hull of a boat remained for two years after the storm.

DISASTER RESPONSES IN THE UNITED STATES OVER THE LAST DECADE Perhaps the most disturbing feature of Katrina was the preventable nature of psychiatric disability in the aftermath of this devastating natural disaster. The lack of effective disaster planning resulted in the inability of so many evacuees to leave the city safely, to live in safe and well-serviced temporary accommodation, and then return to a restored city as soon as possible following the disaster. Although some local areas did have adequate evacuation plans, people with disabilities, including hospitalized psychiatric patients, were often overlooked (McClain, Hamilton, Clothier, & McGaugh, 2007). Despite the incidence of disability in the United States, the National Response Plan—issued by the Department of Homeland Security in 2004, which was intended to be an “all-discipline, all-hazards” approach to domestic disasters of any type—did not acknowledge the special needs of the disabled. Following Hurricane Katrina, this lack of preparedness for the disabled was evidenced by the lack of assistive devices or assistive technology and the lack of accessible entrances at shelters and restrooms. This situation often resulted in the separation of people with disabilities from their families at shelters and deprived them of a major source of support (Waterstone & Stein, 2006). There is no doubt that Hurricane Katrina revealed the extent to which the nation’s health care and public health systems were inadequately prepared to deal with a disaster, even with advance warning. By the time of Hurricane Katrina, however, the country had already experienced multiple natural disasters and terrorist attacks, making the lack of effective disaster planning in New Orleans particularly surprising. In his book Americans at Risk (2006), Redlener described the extent to which the United States was ill-prepared for megadisasters. Other researchers have also commented on the failure to learn and apply lessons from prior disasters, such as Hurricane Andrew in Florida in 1992 (Landesman, 2007). Two years after the hurricane, steps were finally taken to develop a consensus framework for preparedness and response in the national public health system (Lyznicki, Subbarao, Benjamin, & James, 2007), including development of core competencies for health care professionals (Subbarao et al., 2008). Following Katrina, the issue of disability has been addressed by the National Center for Disaster Preparedness, Columbia University, at the National Consensus Conference on Emergency Preparedness: Addressing the Needs of Persons with Disabilities (2005). This conference developed recommendations on disaster planning for people with disabilities (Markenson, Fuller, & Redlener, 2007), but too late for those affected by Katrina.


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However, the presence of frameworks and legislation do not guarantee adequate responses. At the time of Katrina, intervention focused on the psychological impact of a disaster was provided under a federal law, the Stafford Act (most recently amended June 2007). Section 416 of the Stafford Act reads in its entirety: The President is authorized to provide professional counseling services, including financial assistance to state or local agencies or private mental health organizations to provide such services or training of disaster workers, to victims of major disasters in order to relieve mental health problems caused or aggravated by such major disaster or its aftermath.

This very broad range of allowable services is mirrored in the applicable code of federal regulations (42 U.S.C. 5183) and constitutes the statutory and regulatory definition of federally funded postdisaster mental health services known as “crisis counseling” (FEMA, 2007). Stringent restrictions have nevertheless been imposed on crisis counseling services. The FEMAsponsored psychological intervention programs created in response to Oklahoma City (Project Heartland), post-9/11 in New York City (Project Liberty), and most recently post–Hurricane Katrina in Louisiana and Mississippi (Louisiana Spirit and Project Recovery, respectively) failed to meet the needs of the population because they misinterpreted the Stafford Act (Pfefferbaum et al., 1999). For instance, funding was time-limited and could not be used for comprehensive mental health assessment and intensive treatment. Many of the counseling staff lacked experience in trauma intervention. The programs tended to focus on restoring predisaster levels of functioning, rather than psychotherapeutic intervention. Thus, the programs offered little more than a screening and referral program. Given the extensive damage incurred by the mental health infrastructure in affected Katrina communities, compounded by the predisaster capacity inadequacies, the FEMA response was ineffective. Funds that were not spent were returned to the federal government despite the continued need for mental health services. In Mississippi, the FEMA-funded crisis counseling program (Project Recovery) was underspent by $4.5 million when the federal government declared the program over, despite continuing mental health needs and inadequate community-based services to meet those needs. According to published reports at the time, “FEMA refused to assist the institutions that those people were referred to and it has not explained why” (Associated Press, 2007). The difficulties associated with providing mental health services following Hurricanes Katrina and Rita were exacerbated by interruptions of Medicaid coverage for low-income people. In May 2006, nine months after the hurricanes, the mail service was still sufficiently affected to make receipt of Medicaid eligibility renewal papers unreliable, resulting in termination of coverage for those people who could still be reliably reached at their former address. For the many displaced by the storms, who also had lost documents (birth certificates, Social Security cards, etc.) needed to establish or reestablish eligibility, the problems were still more severe. A Medicaid hotline was set up

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to capture new addresses by evacuees, but this was not enough to prevent termination of benefits because of nonresponse to renewal papers sent to the wrong address or not delivered at all (Advocacy Center Louisiana, 2006). For the many hurricane evacuees who had temporarily relocated to other states, there were predictable problems with the lack of interstate portability of Medicaid coverage. There was no consensus as to whether these individuals should bear the fiscal responsibility and be subjected to the Medicaid regulations of their home state or the state in which they currently resided. To the extent that the home state retained responsibility to pay for services in the state where the family had temporarily relocated and sought care, there was no clear mechanism by which the host state would be reimbursed by the home state. Establishing eligibility for evacuees was especially difficult because of lost documentation. A precedent for dealing with establishing emergency Medicaid eligibility following a disaster had already been developed in New York City following the events of 9/11, the Disaster Relief Medicaid Program, but it was not implemented post-Katrina. This failure to apply lessons learned from one disaster to another had the unfortunate impact of delaying access to health and mental health services (Center for Medicare & Medicaid Services, 2007; Christopher, 2005). Partisan disagreements about the nature of Medicaid waivers delayed and ultimately limited the relief that affected people needed to establish or reestablish financial access to health and mental health services. The congressional waiver approach would have covered low-income individuals in need of health care wherever they were after the storm and would have financially protected the affected states for a period of time after storm. The administration countered with a much more limited and less flexible policy proposal, and it was the administration position that prevailed. Matters were made worse by delays making funding available and eventually allocating only $1.5 billion of the $2 billion appropriation. In their analysis, Lambrew and Shalala (2006) found that this federal response was inadequate to meet both immediate and ongoing needs, the response ignored the needs of newly Medicaid-eligible individuals whose circumstances had been altered by the hurricane, and hospitals and other health care providers who did treat affected individuals were not adequately compensated. In fact, even if the full $2 billion was made available, it would have been inadequate to meet the cost of care for the roughly 3 million people in need. The result was not only delayed or denied care but also a deleterious impact on the safety net providers in the storm affected areas. This may have serious ongoing consequences with respect to access to care for vulnerable populations as they recover from the hurricane and its aftermath.

RECOMMENDATIONS FOR A BETTER RESPONSE Social factors are associated with risk and resilience following a disaster. Family and other sources of social support mediated the psychological effect of Hurricane Andrew on adolescents in Florida (Khoury et al., 1997) and Hurricane Georges on college students in the Virgin Islands, Puerto Rico, the Dominican Republic, as well as the United States (Sattler et al., 2002).


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Consistent with these findings, following Hurricane Katrina, social factors as well as preexisting health and mental status were found to be more closely associated with psychological outcomes than were individual demographics (e.g., race/ethnicity, age, gender). This has important implications for predisaster risk assessment and postdisaster intervention (Abramson, StehlingAriza, Garfield, & Redlener, 2008). Since the disaster, strategies have been recommended for promoting a sense of control, empowerment, and normalcy, as well as rapid family reunification following disasters (Madrid, Grant, Reilly, & Redlener, 2006). Of utmost importance is providing individuals and families the opportunity to feel empowered to make decisions and to return to their communities of origin if that is what they wish to do. Children, adults, families, and communities are resilient but need to have the opportunity to resume the roles that are most meaningful to them. Protracted helplessness leads to hopelessness, depression, anxiety, and other manifestations of mental health distress. As such, ensuring that the basic needs of all affected are met is a priority. Once this is the case, it is important to offer opportunities to share, engage in previously important roles, and participate in activities that provide meaning and a sense of belonging. For those who are most impacted by a disaster and who require mental health intervention, the process of obtaining help should be facilitated by community leaders and those that are trusted by the impacted populations. We have also recommended that when planning interventions and developing programs, disaster response must take into account cultural and socioeconomic aspects of the community and region. The availability of medical, mental health, and financial support is essential. State and local government, as well as health care and community-based agencies, should develop lists of clinicians and professionals who specialize in disaster and trauma and who are familiar with community resources, in addition to those who can provide short-term treatment and recognize long-term needs. Financial barriers to care must be addressed by government policies that recognize the need for continuous coverage and ongoing access to care, interstate portability of coverage following disaster-related evacuation, and adequate reimbursement to all parties associated with the delivery of health care. Silove, Steel, and Psychol (2006) proposed a model for conceptualizing, implementing and evaluating psychosocial and mental health programs in postconflict countries. Although the ADAPT framework was developed on the basis of experiences with East Timorese populations and refugees in Sydney, Australia, the paradigm is relevant. It provides ways of thinking about appropriate psychosocial responses that reduce the stress and lack of support experienced and perceived by individuals postdisaster. The model calls for an approach that considers individuals, families, and communities as a whole and emphasizes the role of the community in helping its own members, as the best comfort comes from people who are known and share their experiences and cultural beliefs. Strategic assistance from outside, for example, in supporting grieving, memorial and healing rituals should be carefully designed to avoid intrusion, cultural insensitivity, or disempowerment of local leadership systems. ADAPT proposes the establishment of an emergency community mental health service

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that bases treatment on urgency of individual and family need, which leads to advanced or supportive interventions. This approach means that trauma is not ignored, but that the emphasis in the postemergency phase is shifted toward caring for those whose traumatic reactions are impeding their (and/ or their family’s) immediate capacity to survive and adapt, rather than on attempting to resolve all traumatic reactions across the community as a whole.

SUMMARY AND CONCLUSION Disasters, whether natural or man-made, can be traumatic and life-changing events for those who directly and indirectly experience their impact. Among those most vulnerable to experiencing postdisaster traumatic distress are people with preexisting psychiatric disorders and/or prior histories of traumatic exposure, immigrants, and other high-risk populations. Children are at heightened risk for postdisaster psychological problems, especially if their daily routine is disrupted and their parents experience posttrauma distress, unemployment, perceived lack of support, or an ongoing sense of helplessness. As such, the psychosocial needs of individuals must be taken into account in disaster preparedness as an essential aspect of appropriate recovery. This is particularly true for at-risk populations. More than a decade after the Oklahoma City bombing, six years after the terrorist attacks in New York City and Washington of September 11, 2001, and almost three years after the protracted devastation of Hurricane Katrina on the Gulf Coast, the United States is still not adequately prepared to respond to the next natural or human-created disaster. This lack of preparedness and inadequate response have created serious and long-term consequences for populations both directly and indirectly impacted by disasters. It is also interesting to note that among individuals and families, there is a continuing gap between a high perception of risk and low level of personal preparedness in the context of a worsening decline in confidence in government (Redlener, Abramson, Stehling-Ariza, Grant, & Johnson, 2007). The deleterious impact of failing to meet the mental health needs of people directly and indirectly affected by disaster—especially those with preexisting vulnerabilities—has been repeatedly demonstrated over the past two decades in the United States. Nonetheless, the same fundamental errors in government response have continued to be made. Instead of adequately available, readily accessible community-based mental health services that remain available as long as need persists, restrictive time-limited services are offered and some communities, typically those in greatest need, get no services at all. The predictable result is the needless creation of psychiatric disability—as has been the case in the aftermath of the worst natural disaster in U.S. history, Hurricane Katrina.

NOTE 1. The authors acknowledge the important input from Rita Domnitz, Deputy Director for Mental Health Services, the Children’s Health Fund, and from the


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Louisiana Children’s Health Projects mental health providers: Antoinette A. Bankston from the Baton Rouge Children’s Health Project and Donna Usnerfrom the New Orleans Children’s Health Project.

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National Center for Disaster Preparedness, Mailman School of Public Health, Columbia University. (2005). Considerations in emergency preparedness: A two track conference. Available by request from www.ncdp.mailman.columbia.edu. Nieburg, P., Waldman, R., & Krumm, D. (2005). Evacuated populations—lessons from foreign refugee crises. New England Journal of Medicine, 353(15), 1547– 1549. Noji, E. K., & Sivertson, K. T. (1987). Injury prevention in natural disasters: A theoretical framework. Disasters, 11(4), 290–296. Norris, F. (2007). National Center for PTSD fact sheet: Psychosocial consequences of major hurricanes and floods: Range, duration, and magnitude of effects and risk factors for adverse outcomes. National Center for Posttraumatic Stress Disorder. Retrieved from www.ncptsd.va.gov/ncmain/ncdocs/fact_shts/fs_range_hurricane .html?opm=1&rr=rr141&srt=d&echorr=true. Norris, F. H., Friedman, M. J., & Watson, P. J. (2002). 60,000 disaster victims speak: Part II. Summary and implications of the disaster mental health research. Psychiatry, 65(3), 240–260. Norris, F. H., Friedman, M. J., Watson, P. J., Byrne, C. M., Diaz, E., & Kaniasty, K. (2002). 60,000 disaster victims speak: Part I. An empirical review of the empirical literature, 1981–2001. Psychiatry, 65(3), 207–239. Osofsky, H. (2007). In the eye of Katrina: Surviving the storm and rebuilding an academic department of psychiatry. Academic Psychiatry, 31(3), 183–187. Pfefferbaum, B., Call, J., & Sconzo, G. (1999). Mental health services for children in the first two years after the 1995 Oklahoma City terrorist bombing. Psychiatric Services, 50(7), 956–958. Pfefferbaum, B., Pfefferbaum, R., North, C., & Neas, B. (2002). Does television viewing satisfy criteria for exposure in posttraumatic stress disorder? Psychiatry, 65(4), 306–309. Pfefferbaum, B., Seale, T. W., Brandt, E. N. Jr., Pfefferbaum R. L., Doughty D. E., & Rainwater, S. M. (2003). Media exposure in children one hundred miles from a terrorist bombing. Annals of Clinical Psychiatry, 15(1), 1–8. Redlener, I. (2006). Americans at risk: Why we are not prepared for megadisasters and what we can do now. New York: Knopf. Redlener, I., Abramson, D., Stehling-Ariza, T., Grant, R., & Johnson, D. (2007). The American Preparedness Project: Where the US public stands in 2007 on terrorism, security, and disaster preparedness. Retrieved from www.ncdp.mailman.columbia. edu/files/NCDP07.pdf. Rudowitz, R., Rowland, D., & Shartzer, A. (2006). Health care in New Orleans before and after Hurricane Katrina. Health Affairs, 25(5), 393–406. Sattler, D., Preston, A., Kaiser, C., Olivera, V., Valdez, J., & Schlueter, S. (2002). Hurricane Georges: A cross-national study examining preparedness, resource loss, and psychological distress in the U.S. Virgin Islands, Puerto Rico, Dominican Republic, and the United States. Journal of Traumatic Stress, 15(5), 339–350. Silove, D., Steel, Z., & Psychol, M. (2006). Understanding community psychosocial needs after disasters: Implications for mental health services. Journal of Postgraduate Medicine, 52(2), 121–125. Singer, P. (2006). FEMA works to keep trailer parks temporary. National Journal. Retrieved from www.govexec.com/dailyfed/0306/031306nj1.htm. Stoddard, E. (2007). Post-Katrina New Orleans death rate shoots up. Reuters Foundation. Retrieved from www.alertnet.org/thenews/newsdesk/N21396585. htm. Subbarao, I., Lyznicki, J. M., Hsu, E. B., Gebbie, K. M., Markenson, D., Barzansky, B., et al. (2008). A consensus-based educational framework and competency set

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for the discipline of disaster medicine and public health preparedness. Disaster Medicine and Public Health Preparedness, 2(1), 57–68. U.S. Census Bureau. (2004). General demographic dharacteristics. Retrieved from factfinder.census.gov/servlet/ADPTable?_bm=y&qrname=ACS_2004_EST_ G00_DP1&-geo_id=16000US2255000&-ds_name=&-redoLog=false. U.S. Census Bureau Housing and Household Economic Statistics Division. (2004). Poverty. Retrieved from www.census.gov/hhes/www/poverty/poverty04/ table8.pdf. U.S. Census Bureau of Labor Statistics. (2004). Unemployment rate. Retrieved from www.census.gov/statab/ranks/rank25.html. U.S. Department of Education. (2005). Testimony of Assistant Secretary Johnson on Hurricane Katrina and elementary and secondary education. Retrieved from www.ed.gov/news/speeches/2005/09/09222005.html. U.S. Government Accountability Office. (2006). Status of the health care system in New Orleans. Retrieved from www.gao.gov/new.items/d06576r.pdf. Wang, P., Gruber, M., Powers, R., Shoenbaum, M., Speier, A., Wells, K., et al. (2008). Disruption of existing mental health treatments and failure to initiate new treatment after Hurricane Katrina. American Journal of Psychiatry, 165(1), 34–41. Watersone, M. E., & Stein, M. A. (2006). Emergency preparedness and disability. Mental & Physical Disability Law Reporter, 30(3), 338–339. Weisler, R., Barbee, J., & Townsend, M. (2006). Mental health and recovery in the Gulf Coast after Hurricanes Katrina and Rita. Journal of the American Medical Association, 296(5), 585–588. Whoriskey, P. (2006, June 7). Katrina displaced 400,000, study says: New Orleans becomes whiter, Mississippi coast more diverse. Washington Post, A12. Zuckerman, S., & Coughlin, T. (2006). Initial health policy responses to Hurricane Katrina and possible next steps. Urban Institute. Retrieved from www.urban.org/ publications/900929.html.

CHAPTER 2

Autonomy and Disability: A Quest for Quality of Life Bedarius Bell Jr., Shelley R. Henthorne, Doris Adams Hill, Jane W. TurnbullHumphries, and Stephanie T. Zito

A

utonomy in the United States is embedded in a set of principles deeply rooted in equality—principles which have defined our nation and given way to both civil and human rights. These basic ideas were written to be a blueprint of our country and are part of one of the most well-known documents in American history. The Declaration of Independence, written by Thomas Jefferson in 1776, declared: “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights that among these are Life, Liberty, and the pursuit of Happiness.” From a historical perspective, however, the autonomy alluded to in these high ideals remains unrealized for far too many disenfranchised members of society. The purpose of this chapter is to examine the concept of autonomy, especially as it applies to people with disabilities. First, the chapter presents a foundation for understanding the nature and meaning of autonomy, and its related constructs of self-determination and choice making, from definitional, disabilities, and legislative perspectives. In addition, several issues are introduced that provide cause for reflection. Second, a life span perspective is presented on supporting autonomy at the preschool age, the school age, and throughout adulthood. Finally, relevant research is summarized: comparative studies, or findings between individuals with and without disabilities; the relationship between motivation and self-determination, and the positive impact of self-determination.

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A FRAMEWORK Definitions The Shorter Routledge Encyclopedia of Philosophy (Craig, 2005) defines the core idea of autonomy as “that of sovereignty over oneself, self-governance or self-determination: an agent or political entity is autonomous if it is selfgoverning or self-determining” (p. 75). It continues to explain that the ancient Greeks applied the term to city-states and in the later modern period, Immanuel Kant extended it to persons. Kant is typically regarded as one of the most influential thinkers of modern moral philosophy and the age of Enlightenment. He believed that the possession of both will and reason was necessary to be considered a person in the moral sense. The Western cultural values and priorities that shape the definition of autonomy have fallen short in addressing the ethics of other cultures (Cardol, deJong, & Ward, 2002; Carver & Scheier, 2000; Wehmeyer, 2004). The Western ideal of autonomy, for example, is equated with independence and freedom of choice. The relevance of such concepts, however, may be questioned by cultures that are more centered on loyalty to groups, interdependence in and within families, or respect for traditions. Autonomy is one of four essential characteristics of a self-determined individual. Autonomous functioning (or behavioral autonomy), self-regulation, psychological empowerment, and self-realization all have a direct relationship to the concept of self-determination (Clapton & Kendall, 2002). Autonomous functioning can be seen as either decisional (making choices, problem solving) or executional (performing behavior that results from choice making, independent living, and risk taking). Within this framework, “a behavior is autonomous if the person acts according to his or her own preferences, interests, and/or abilities and in an independent manner, free from undue external influence or interference” (Wehmeyer, Agran, & Hughes, 1998, p. 7). Conversely, learned helplessness and programmed dependence have been used to describe the consequence of the absence of choice and control: the failure to develop a sense of self-efficacy and direction. The elusiveness of autonomy in American society is compounded by a lack of clarity and consistency in its meaning. Self-determination is a term often used interchangeably with autonomy within the field of disability. However, the somewhat variant meanings tend to add some ambiguity to the equation (Turnbull & Turnbull, 2006). One of the earliest introductions to the concept of self-determination in the field of disabilities was in the early 1970s. Nirje (1972) equated self-determination with respect and dignity and identified several of its significant features, such as choice and autonomy. A contemporary of Nirje, Robert Perske (1972), called for the opportunity for people with disabilities to experience “the dignity of risk”: “The world in which we live is not always safe, secure and predictable. . . . We must work to develop every human resource within us in order to prepare for these days. To deny any person their fair share of risk experiences is to further cripple them for healthy living” (p. 199). In 1989, the term self-determination and its meaning became a federal initiative (Ward, 1992). Specifically, the Office of Special Education and Rehabilitative

AUTONOMY AND DISABILITY

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Services, U.S. Department of Education, sponsored a national conference on self-determination. The first of 29 recommendations resulting from that conference was: “The enabling of people with disabilities to determine their own futures to be seen as the top priority in all government policy-making functions” (p. 4). Wehmeyer and Garner (2003) identified two factors that constituted self-determination. The first was the ability of an individual to act in a self-determined manner, and the second was the opportunities the environment produced for individuals to be in control of their lives. Numerous definitions of self-determination appear in the literature (e.g., Browning, 1997; Halloran, 1993). Serna and Lau-Smith (1995) stated that “Self-determination refers to an individual’s awareness of personal strengths and weaknesses, the ability to set goals and make choices, to be assertive at appropriate times, and to interact with others in a socially competent manner” (p. 144). Wehmeyer (1992) defined self-determination as “the attitudes and abilities required to act as the primary causal agent in one’s life and to make choices regarding one’s actions free from undue external influence or interference” (p. 305). Deci and Ryan (1985), leading social psychologists on motivation and self-determination, defined self-determination as the capacity to choose and to be the determinants of those actions. Choice, the central factor in all three definitions, becomes a critical feature in the development of autonomy. Unfortunately, individuals with disabilities are still often viewed as being unable to make choices about their lives (Clark, Olympia, Jensen, Heathfield, & Jenson, 2004). Choice making, which is a decision-making process, involves the expression of needs, desires, and preferences, as well as implies the ability to select among options. Some attempts have been made to design curricula for teaching this self-determination skill. As one such example, Martin and Marshall (1995) developed a curriculum for high school students with disabilities titled ChoiceMaker Self-Determination Transition Planning. Choice is a term and concept that has been especially embraced in the field of rehabilitation (Patterson, Patrick, & Parker, 2000). In the Rehabilitation Act Public Law 103-73) Amendments of 1992 (section 100(a)), it is stated that “individuals must be active participants in their own rehabilitation programs, including making meaningful and informed choices about the selection of their vocational goals, objectives, and services.” Choice is also directly related to the Code of Professional Ethics for Rehabilitation Counselors (Commission on Rehabilitation Counselor Certification [CRCC], 2002). The first of five principles is autonomy, which is the right to individual decisions. Likewise, a position statement has been adopted on self-determination by the Council for Exceptional Children’s Division on Career Development and Transition (Field, Martin, Miller, Ward, & Wehmeyer, 1998). Some research on self-determination and individual choice has compared individuals with disabilities to those without. Wehmeyer and Kelchner (1995) reported that adults with mental retardation, when compared to their peers without disabilities, experience limited opportunities to make choices and have control in their lives. They also noted that adolescents with learning disabilities, as compared to adolescents without disabilities, differed significantly in their autonomous functioning in self-management activities and the

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use of community resources. In sample of 408 adolescents and adults with mental retardation, Wehmeyer and Kelchner (1995) found 32 percent reported that they never prepared food that required cooking and 56 percent indicated that they rarely made minor repairs to the home, such as changing a light bulb. These findings suggest that individuals with disabilities are not provided the opportunities to act autonomously or do things for themselves. Perhaps these results are suggestive of society’s belief that individuals with cognitive disabilities are unable to make their own life choices. In preparation for this chapter, one of the authors interviewed the assistant attorney general for the state of Alabama and a consultant to the Alabama Department of Rehabilitation Services. Although much of the interview centered on the legal aspects of autonomy and disability, probably the simplest, yet most profound words expressed by Attorney Graham Sisson, who has a physical disability, in regard to defining autonomy, were: Making your own choices and directly making all the major decisions for your life. I decided who I was going to marry, where I was going to go to school, where I was going to live and work, and what I was going to eat every day . . . making the very simplest choices to the most complex choices. . . . Autonomy with limited choices is meaningless. . . . Your life is a product of choices. . . . Why not be the person that makes those choices? (personal conversation, April 4, 2007)

In summary, the nature and importance of having choices and being able to make them among alternatives is a highly valued human condition (Guess, Benson, & Siegel-Causey, 1985). As noted by Parent (1993), “If individuals are to experience personal satisfaction and quality of life, regardless of whether or not they have a disability, it is critical for them to have the right to make choices, express preferences, and exercise control over their lives” (p. 20).

Disabilities Prior to the 1960s, many people did not enjoy full legal protections as “autonomous persons,” including people with disabilities. Once an individual was labeled incompetent or “feeble-minded,” for example, access to the inalienable rights afforded by the Declaration of Independence could be controlled through guardianship or paternalism. Institutionalization and forced sterilization became tools for preserving racial purity, and the eugenics movement gained momentum in American society. Court decisions upheld the constitutionality of forced sterilization of people with disabilities (Buck v. Bell, 274 U.S. 200; 47 S. Ct. 584, 1927), and by 1938 some 33 states had sterilization laws in place; sterilization was considered to be as commonplace as vaccinations. Our society has advanced from viewing individuals with disabilities as people who are incapable of making choices. Since the early 1960s, the concept and practice of autonomy and self-determination for people with disabilities has become paramount as an outgrowth of landmark legislative enactments, as well as many movements, including the consumerism movement (Browning, 1997), the civil rights movement (Martin, 2001), the independent living


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movement (DeJong, 1979), the self-advocacy movement (Rhoades, 1986), and the self-determination movement (Field et al., 1998). One important new philosophy underlying these movements was “normalization,” which stressed the principle that the pattern of life for people with disabilities should be as close as possible to that of regular societal environments and circumstances (Wolfensburger, 1972). The definition of disability itself has implications for how people with disabilities are viewed by others as autonomous functioning, self-determined, choice-making individuals. Until recently, the field of medicine has been more interested with the disease than in the person with the disease (e.g., Cardol et al., 2002; Vehmas, 2004). Such thinking and practice falls under the paternal or deficit model (Pfeiffer, 2002) and focuses on the individual deficits, functional limitations, and impairments. It suggests that something is wrong with the individual. The model states that a person with a disability is insufficient in some area that must be “fixed” before they can be normal, and since most disability cannot be corrected, it suggests there is never a prospect of them becoming normal. This definitional viewpoint encourages the practice of handicapism by treating people with disabilities as children with the tendency to speak for them (Biklen & Bogdan, 1976). Such a framework is inhibiting to the value and practice of autonomy. According to Cardol et al. (2002), there are several principles that must be applied for the field of medical rehabilitation to employ a focus on the person rather than the disease. These principles include autonomy, involvement in life situations in relation to disability (or participation), self-awareness, interdependence, and an “ethic of care.” There is a strong recognition of the importance of the concept of autonomy to participation and even an acknowledgment that it should be the ultimate goal of the field. However, the concept of autonomy as financial or physical independence continues to limit consumer involvement. In an attempt to define autonomy in the context of a disabling condition, Cardol et al. (2002) distinguished decisional autonomy (the ability to make decisions without external restraint or coercion) from executional autonomy (the ability or freedom to act on the basis of decisional autonomy). Both of these definitions can create major limitations for people with disabilities, due to restricted physical, cognitive, and psychological abilities. Even with this dual definition, autonomy would remain unachievable for some people because the tendency is to equate it with independence. An alternative to the deficit model is to view disability as a sociopolitical condition that is characterized by the interaction between the individual and society. In this sense, rather than tracing the consequences to one’s personal defects, they are traced primarily to the features of the disabling physical, social, political, and economic environment (Bogdan, 1986; DeJong, 1979; Hahn, 1991). This ecologically based disability belief suggests that “we should increase our efforts to assess the community’s prothesis, change community attitudes, engage in job redesign and modification, remove inhibiting qualityof-life barriers, and enforce civil rights about access to housing, transportation, education, and employment opportunities” (Browning, 1997, p. 76). Such a viewpoint provides a viable foundation for autonomous functioning.

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Legislation Since 1973, four pieces of U.S. landmark legislation or amendments to legislation have had a profound effect on the rights, dignity, and quality of life for persons with disabilities. The legislation is replete with language that values autonomy, independence, self-determination, equal opportunity(ies), personal interests and preferences, and making choices and decisions. Collectively, this legislation represents sweeping civil rights acts that target the elimination of discrimination and guarantee equal rights protection in all areas of life, including education, employment, transportation, housing, public services, public accommodation, voting, services operated by private entities, and telecommunications for individuals with disabilities. The legislation provides an infrastructure from which autonomy can be fully promoted and ensured for people with disability. The Individuals with Disabilities Education Act (IDEA) (Public Law 108446) addressed the need for special education teachers to include their students’ preferences and interests into their individualized plans and programs. The mandate to involve students in the discussion of their future goals and plans reflects the values of self-determination, enablement, and shared responsibility. The Americans with Disabilities Act (ADA) (Public Law 101-336) provided the unique opportunity to enhance “self-determination, choice, and greater freedom for all persons with disabilities in the United States” (Ward, 1993, p. 8). The Developmental Disabilities and Bill of Rights Act (Public Law 106-402) promotes self-determination, independence, productivity, and integration and inclusion in all facets of community life. The Rehabilitation Act (Public Law 103-73) promoted self-determination, independent living, choice making, and full inclusion, especially in the context of work (e.g., career goals, job preferences, community employment) (West, 1995). A major piece of legislation in the United States concerning people with disabilities, the Rehabilitation Act, stated “disability is a natural part of the human experience and in no way diminishes the right of individuals to—(a) live independently; (b) enjoy self-determination; (c) make choices; (d) contribute to society; (e) pursue meaningful careers; and (f ) enjoy full inclusion and integration in the economic, political, social, cultural, and educational mainstream of American society” (emphasis added). The United States and Canada were among the first countries to adopt antidiscrimination laws and other human rights legislation for persons with disabilities (Degener, 2000). Since the beginning of the 1990s, however, more than 20 nations have enacted disability discrimination laws. According to Degener, a significant number of countries seem to have modeled their modern disability discrimination legislation on the ADA and its predecessors. This interest and legal framework for autonomy in the lives of people with disabilities has extended well beyond the borders of the United States. On March 30, 2007, the United Nations’ first Convention on the Rights of Persons with Disabilities was held. In a UN press conference held March 13 of that year, it was stated: the convention ensures that persons with disabilities enjoy the same human rights as everyone else, and are able to lead their lives as fully-fledged citizens


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who can make valuable contributions to society if given the same opportunities. It covers rights such as equality, non-discrimination and equal recognition before the law; liberty and security of the person; accessibility, personal mobility and independent living; right to health, work and education; and participation in political and cultural life. The treaty will enter into force when ratified by 20 countries.

Eighty-one member states and the European Community, a record for the first day of signature of any UN convention, signed a landmark new treaty that was the first comprehensive human rights treaty of its kind in the 21st century. One of the eight guiding principles underlying the convention that aims to improve the lives of the world’s estimated 650 million people with disabilities is “Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons.”

Reflecting on How Disability Is Defined How disability is defined has implications for how people with disabilities are viewed by others as autonomous, self-determined, choice-making individuals. For example, too often, the fields of special education and rehabilitation have been married to the medical or “fix-’em-up” disability definition model, which has focused our vision and attention to the individual’s clinical needs related to his or her functional limitations, impairments, and skill deficits (Browning, 1997). It suggests that the problem(s) under consideration is mainly the result of something wrong within the individual, which often leads to negative consequences. In all, limitations of choice and control may not only be directly related to disability but to society’s interpretation of that disability (Clark et al., 2004). Major attention has been given to the nature and significance of autonomy as a legal human right and supporting it for its contribution to one’s quality of life. Federal legislation has now fully embraced it for people with disabilities, and research has positively supported the concept and practice of self-determination and choice making in terms of one’s human performance, motivation, and self-esteem. Therefore, the essentialness of autonomy in the lives of these individuals is fully endorsed. Perhaps another way to underscore the significance of this valued human condition is to acknowledge and discuss the alternative (and its consequences) of not allowing individuals to control their own lives! What happens to them if we do not foster their autonomy? What is the relationship between one’s state of “helplessness” (Seigleman, 1975) and autonomy?

Professional Support The discussion of autonomy as an ethical issue means that professionals must be obligated to uphold individual choice. The concept of autonomy is not just providing individuals with the opportunity to be in control of their lives, it is about a belief system that professionals must adopt to foster the development of autonomy (Phemister, 2001). The Commission on Rehabilitation Counselor Certification has taken the step of listing autonomy

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as one of five principles of ethical behavior that guide the construction and development of the CRCC Code of Ethics (preamble). All certified rehabilitation counselors subscribe to a code of professional ethics, which directs the practice of rehabilitation counseling. The code is based on (a) autonomy: to honor the right to make individual decisions; (b) beneficence: to do good to others; (c) nonmaleficence: to do no harm to others; (d) justice: to be fair and give equally to others; and (e) fidelity: to be loyal, honest, and keep promises to others (Rasch, 1996). It is essential that rehabilitation counselors demonstrate adherence to ethical standards and ensure the standards are enforced vigorously.

Ability to Act Autonomously Unfortunately, we are still too often conveying the message that individuals with disabilities are unable to make choices about their lives (Clark et al., 2004). Yet professionals (and parents) may at times wonder whether individuals are capable of understanding the decisions they are making and the potential consequences or dangers regarding those personal decisions (Meininger, 2001). There may be certain situations, for example, when individuals with significant cognitive disabilities lack the necessary skills to make an informed decision. The issue is couched in the questions: When should one’s right to make self-determined choices be halted, due to one’s level of intellectual functioning? When does a disability affect ones ability to act autonomously?

Providing Opportunities to Function Autonomously For children and adults to learn how to function autonomously, they must be provided opportunities and environments that allow them to make choices and decisions (Deci & Chandler, 1986). Unfortunately, some parents of children with disabilities provide very few opportunities for their children to make choices or decisions and often display much control over the future of their children with disabilities (Zhang, 2005). Deci and Chandler (1986) recommended using little control in the classroom, allowing children to solve their own problems, encouraging students to create and act on their own plans at their own speed. It is clear that individuals with significant disabilities should be taught directly and provided opportunities to develop autonomy. Are there some essential opportunities that should be afforded to everyone across the life span? Are there some essential (and unique) opportunities that should be especially afforded to people with disabilities across their life spans?

Summary The definition and expression of autonomy has evolved and, in some cases, devolved over the years. Although the academic means and terms vary and can be confusing to both professionals and consumers, the application is generally unchanged. Autonomy is having some level of control over the


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decisions and actions made in one’s life. We are all dependent on others to varying degrees. The Western societal notion of a self-made individual is false. Just as autonomy need not necessitate total independence, dependence on other people need not be oppressive (Clapton & Kendall, 2002). With the concept of interdependence properly placed within the natural framework of human existence, people with disabilities who have dependence needs would be seen no differently than other members of society. According to Browning (1997), we are now “moving from viewing people with disabilities as being ‘passive recipients’ of education and services, to that of ‘active participants’ who are capable of making their own choices, and mapping-out and steering their own future” (p. 85).

SUPPORTING AUTONOMY: A LIFE COMMITMENT Developing autonomy is important for individuals with disabilities (Crittenden, 1990); autonomy plays a significant role in life’s activities such as choice making, goal setting and attainment, problem solving, and selfevaluation (Clark et al., 2004). Federal legislation has mandated adherence to this human condition across the life span for people with disabilities. In spite of these legal safeguards, it remains a major responsibility of families and professionals to create and nurture environments that promote and support autonomy at home, at school, and in the community. Supporting autonomy, according to Black and Deci (2000), is “the idea that an individual in a position of authority takes the other’s perspective, acknowledges the other’s feelings, and provides the other with pertinent information and opportunities for choice, while minimizing the use of pressures and demands” (p. 742). Nevertheless, it is not enough to merely provide choices to individuals with disabilities. Rather, families, professionals, and significant others in the lives of these persons must also acknowledge, respond, and discuss those choices in terms of their appropriateness and consequences. Supporting autonomy can be achieved through the teaching of cognitive-behavioral skills. It can be promoted by teaching self-enabling, selfdetermination skills such as choice making, goal setting, self-knowledge and awareness, self-advocacy, and positive perceptions of control and efficacy (e.g., Browning, 1997; Shogren & Turnbull, 2006). The teaching of these skills to achieve a more autonomous life must be an ongoing and collective undertaking between key persons in the home, school, and postschool setting (e.g., families, teachers, rehabilitation counselors). Self-management is another trend in which autonomous functioning can be supported and/or taught. Self-management is a state in which individuals have control over events and actions that affect their lives (Kendall, Muenchberger, & Clapton, 2007). This control may be a collaborative or individual effort. In Australia, self-management is being supported through a peer-led programs to help individuals share in decision making about treatment and gain self-control over the events in their lives despite their illness. Achieving autonomy requires more than the teaching of self-determination skills. In addition, it calls for the learner to believe that he or she can perform a

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behavior and have the expectation of achieving the desired result (Thoma & Sax, 2003). Individuals must be provided with opportunities to develop perceptions of their behavior performance efficacy and their ability to maintain control of their lives (Wehman, 2006). This latter consideration is an essential part of the equation in that one must have the opportunity to apply the self-directed skills and a supportive environment in which to do so (Browning, 1997). The autonomous related skills are meaningful only insofar as the environment is open to their application, and herein lies this section’s focus. As such, emphasis is placed on the environment for promoting autonomy at the preschool age, school age, and postschool age.

Supporting Autonomy at the Preschool Age A typical behavior exhibited by toddlers is the testing of their independence. This early age is a time for creating opportunities whereby the toddlers can explore, make decisions, and ask questions (Cook, Klein, & Tessier, 2004). Toddlers are “naturally inquisitive and enjoy self-directed exploration of a new environment” (Bondurant-Utz & Luciano, 1994, p. 37). These earlier years have been recognized as the “declaration of independence” (Brazelton, 1974), or a stage for developing healthy autonomy (Erikson, 1963). Children at this earliest stage of development are ready to develop a sense of initiative if they have developed a basic trust in their environment and in themselves, and have experienced a growing self-confidence in their ability to explore and experiment (Cook et al., 2004, p. 190). The parent will help the child gain a sense of autonomy if there is a positive, reinforcing, and patient attitude on the parent’s part (Turner, 2000). Parents need to be the initiators and supporters for developing autonomy in their children by creating home environments that allow for and nurture autonomous functioning (Shevin & Klein, 2004). During the preschool years, children develop self-determination skills and attitudes that can be fostered with both physical and social contexts (Turner, 2000). The physical contexts include rooms within the home, the furnishings, and toys, whereas the social contexts include family, culture, and social interactions (Shogren & Turnbull, 2006). The development of autonomy can be promoted when parents permit their children to explore and engage with materials and activities that hold their attention, such as toys and clothing. Having the option to choose activities and materials that are interesting allows children to develop preferences that further define their personal identity (Shogren & Turnbull, 2006). Parents can also help support autonomy within the physical area of the home. It is important for children to have their own space to keep their things or retreat to when they want to be alone. The idea of having their own space aids in the development of perception of control and autonomy. Within the social realm of the home environment, the parent–child relationship plays a critical role in the development of autonomy. According to research, infants that are securely attached to their parents, or caregivers, tend to have more confidence, curiosity, and self-reliance (Cassidy & Shaver, 1999; Waters, Wippman, & Stroufe, 1979). There are parenting styles, for


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example, that create a balance between demand and responsiveness, lead to more self-reliance, responsibility, independence, and autonomy (Baumrind, 1972; Baumrind & Black, 1967). Finally, as children get older, they move toward more self-awareness and independence (Field & Hoffman, 1999). Accordingly, families must adapt and make changes to the physical and social contexts in the home as their children grow, since these changing needs effect the home’s autonomy supporting environment. In summary, parents have a significant role to play in helping develop autonomous behavior in their children. The initiation of this quality of life condition should begin at the child’s infant–toddler age and continue to be developed across the individual’s life span. The home setting provides an important climate for initiating, nurturing, and promoting its development.

Supporting Autonomy at the School Age Opportunities for autonomous development in the school setting are essential. Underlying its importance is the premise that an autonomous environment within the school will have a positive impact on the motivational climate for students (Lundberg, 2007). Almqvist and Granlund (2005) found participation in school activities to be related to autonomy. The more autonomous the student, the more likely he or she is to participate both in the classroom and in various school sponsored activities. Students with disabilities who are in their least restrictive environment (LRE) have more autonomous opportunities with their typical peers in general education programs. Briefly, LRE is the right to learn in an inclusive environment. The IDEA mandates and ensures that all students with disabilities have the right to learn in an environment that is consistent with their academic, social, and physical needs, and “to the maximum extent appropriate,” be educated with children who are not disabled (IDEA, 20 U.S.C. 1412 [5] (B)). An LRE in the educational setting provides an environmental climate that is highly conducive to the development and promotion of self-directed skills (e.g., social problem solving, goal setting). It also ensures them of their right to learn in a setting that is consistent with their needs. Autonomy within the classroom setting is the students’ need for control over decisions in the school regarding “initiation, inhibition, maintenance, and redirection of activities” (Connell, 1990, p. 65). A major strategy to support autonomy is to provide a responsive environment in the classroom by providing situations in which individuals share control, express preferences, and choose activities in which to participate (Wall & Dattilo, 1995). Again, students’ perception of control increases when they are given choices and allowed to make decisions based on those choices (Stefanou, Perencevich, DiCintio, & Turner, 2004). In turn, their engagement increases in the learning process (e.g., Deci, 1980; Deci & Ryan, 1987). Thus, teachers must provide autonomy supportive environments that aid in the learning process. Three classroom dimensions can be changed to facilitate self-determination, which in turn leads to autonomous functioning (Whaley & Bennett, 1991). These dimensions are physical environment, social environment, and instructional practices.

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Whaley and Bennett (1991) suggested setting up the physical environment in such a way that allows for learning zones that make learning materials available to all students. It is important to provide a large variety of materials and to use manipulative toys, which will affect the physical environment, as well as have an effect on the classroom’s social environment. Disputes between children can be avoided since there are many more options from which to choose. Finally, this consideration of the physical and social environment allows children to make choices and enhances social interaction among the students. The third modifiable dimension is instructional practices. One such practice for teaching to self-determination is the Foxfire democratic approach to learning (Ensminger & Dangel, 1992). Through this learner-centered approach to teaching, students have the responsibility for making decisions about the activities they choose. This democratic style of instruction also allows students to guide their learning and leisure. The Foxfire approach is one method that leads to ownership and allows individuals to become engaged participants in their own education (Wall & Dattilo, 1995). Since the early 1990s, there has been a plethora of curricula designed to teach students self-determination skills. Consider, for example, some of the following programs: 1. Choice-Maker and Self-Determination Series (Martin, Marshall, Maxson, & Jermann, 1997), 2. Steps to Self-Determination (Field & Hoffman, 1996), 3. Skills for Independent Living (1997), 4. Whose Future Is it Anyway? (Wehmeyer & Kelchner, 1995), 5. Self-Advocacy for People with Developmental Disabilities (Browning & Rhoades, 1986), 6. A Practical Guide for Teaching Self-Determination (Field et al., 1998). The integration of these instructional materials into the students’ larger curricula program will underscore the educational system’s value and commitment to promoting self-determination in their students. The learning environment becomes one that is directed toward the students’ ability to embrace an autonomous lifestyle. Instead of self-determination instruction, Stefanou and colleagues (2004) focused on the learning opportunities that students have within the classroom and proposed three features of autonomy support: (a) organizational autonomy support, (b) procedural autonomy support, and (c) cognitive autonomy support. Organization autonomy support allows students to have ownership over the environment and make choices about classroom rules and due dates for assignments (Stefanou et al., 2004). Within organizational autonomy support, students are allowed to choose group members, evaluation procedures, and the seating arrangement. Procedural autonomy support promotes student ownership of form. One teaching strategy might be to allow students to decide how to present a project, whether it is by poster or written report. Students are also given the opportunity to choose materials to use in class projects, discuss their wants,


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and handle materials. Finally, cognitive autonomy support promotes student ownership of the learning and can consist of teacher behaviors such as asking students to evaluate their own work and that of others (Logan, DiCintio, Cox, & Turner, 1995). Cognitive autonomy support also gives students the opportunity to discuss multiple approaches and strategies, find multiple solutions to problems, and reevaluate errors. There is no perfect mixture of organizational, procedural, and cognitive autonomy support that leads to true learning and motivation. The high school years are an especially critical time for preparing students to assume the demanding responsibilities of adulthood. The development of their transition plan, which is mandated by law at age 16, is an important tool. Furthermore, the student should be involved in the planning and implementing of his or her own transition; by doing so, he or she will learn self-advocacy, decision making, self-evaluation, and goal-setting skills (Field et al., 1998). As young students prepare for a more independent and autonomous life, it is imperative they be taught self-determination skills in the classroom and community through choice making with regard to academics, independent living, and leisure activities. Self-determination skills are especially important for transition-age students to develop to aid in their becoming young empowered adults. For students to be actively involved in the process, they should learn how to make decisions, advocate for themselves, and set goals. Because of its relevance, self-determination for high school students with disabilities was earmarked as one of five major issues for the 90s (Halloran, 1993). Most leaders in the field would agree that the concept and practice of autonomy is an essential element in preparing them for a successful transition from school to community life. In addition to the enabling skills, research has shown that enhanced choice opportunities for these young students leads to better outcomes in vocational services and placements (Brooke, Green, Revell, & Wehman, 2006). Through the Individuals with Disabilities Act, legislation states that services must be based on “the individual child’s needs, taking into account the child’s strengths, preferences, and interests” (IDEA; emphasis added). Even though mandated by law, demanded by individuals, and proven to deliver better outcomes, professional perceptions may not always align with the student’s choices or preferences, even when they claim to support behavioral and decisional autonomy (Martin, Woods, Sylvester, & Gardner, 2005). Using a Choose and Take Action software program, eight individuals with severe cognitive disabilities who participated in a school-to-work employment program were surveyed, along with their parents, teachers, and residential and vocational staff. The purpose of the study was to compare what caregivers believed the students with disabilities preferred to what the eight students actually chose. The match ranged between 18 to 35 percent across an array of variables (e.g., setting, activity, choices) (Martin et al., 2005). These findings suggested that it is not enough to simply acknowledge support autonomous functioning. Actions must promote it! High school students must be provided the opportunity to learn and practice self-advocacy skills. As Halloran (1993) stated, “It is unrealistic to expect

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students to become well adjusted and active members of their community if they are not also afforded opportunities to become active members in decisions that affect their future” (p. 215). Self-advocacy and group advocacy are highly regarded strategies for preparing students to assume a more autonomous life. At the personal level, self-advocacy involves individuals speaking for and acting on their own behalf, making decisions, and influencing situations that affect their lives, and reaching their highest possible level of independence. It is a matter of stating one’s own preferences and interests, setting one’s own goals, mapping out one’s own plans, and acquiring resources for one’s own cause. Group advocacy provides a viable opportunity for secondary students with disabilities to engage in autonomous experiences outside the classroom. In fact, such experiences may serve as the empowering bridge they cross from school to young adult life. Through self-advocacy groups, students have the opportunity to better learn the right to speak out and be heard, to make choices, and for consumer control. In this regard, the close relationship between advocacy, self-determination, and autonomy is evident (e.g., Beckwith, 1993; Impact, 1994; Martin, Marshall, & Maxson, 1993; Turner, 1995; Ward, 1993; Wehmeyer & Berkobien, 1991). When discussing individual and group self-advocacy for high school students with disabilities, Gould (1986) stated, “The opportunity to be trained and act as advocates, alone or in consumer groups, helps to ensure that transition-age youth will actively participate in giving direction to their own lives” (p. 42). In addition to teaching them their human and legal rights, the very process itself would “sensitize” them to their “responsibilities, to their unique problem-solving and decision-taking skills, to their planning skills, to their communication skills, to their own capacity for assertiveness, [and] to their own areas and interests in community involvement” (p. 41). In summary, students who learn in the least restrictive environment are more likely to have the opportunity to express their autonomy through choice-making, goal-setting, and decision-making experiences. This normalized educational experience provides an extended developmental foundation that is especially conducive to encouraging and promoting autonomous behavior. Not only is it an especially appropriate setting for teaching them self-determination skills, but also one where the students are able to apply those skills repeatedly, and over multiple years, in a supportive learning environment.

Supporting (and Maintaining) Autonomy throughout Adulthood Self-determined, autonomous behavior is a central ingredient for enhancing the quality of life for persons with disabilities as they transition from school to community, to employment, and to independent living. Most definitely, adulthood is a time of change and spans many decades. As these changes, transitions, and interventions occur, there should be a focus on maintaining personal control of change to facilitate individual independence and autonomy (Szymanski, 1993).


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Congress, in recent years, has enacted legislation that ensures people with disabilities the full civil rights of all citizens in terms of their freedoms and liberties at all levels of life, including an inclusive education, inclusive employment, and inclusive community and residential living. The presence (and legal enforcement) of these inclusive and nondiscriminatory environments serve as a permanent foundation that allows and promotes the autonomy of people with disabilities throughout their lives. The ADA (Public Law 101336) provides an infrastructure for the promotion of autonomy of all people with disabilities in their adult age. It is a comprehensive mandate to guarantee all people with disabilities equal opportunity in employment, public accommodations, transportation, state and local government services, and telecommunications relay services. At the time of the signing, President George Bush (Sr.) said, “Every man, women and child with a disability can now pass through once closed doors into a bright new era of equality, independence and freedom.” Later, President Bill Clinton stated: “Together we’ve begun to shift disability in the USA away from exclusion, towards inclusion; away from dependence, towards independence; away from paternalism, towards empowerment.” Clinton’s strong comment illustrated the need for change, but implementation of these changes calls for a partnership in service delivery. The ADA, in addition to its companions, the Rehabilitation Act and the Developmental Disabilities Assistance and Bill of Rights Act (DD Act), serve as a firm and lasting foundation on which autonomy may be promoted and ensured for all people with disabilities. The DD Act places special emphasis on the practice of community integration for people with developmental disabilities through community-based services, case management, supported employment, and systems advocacy, whereas the Rehabilitation Act promotes the full inclusion in employment and independent living for all people with disabilities.

Postschool Environments Working in real jobs in typical communities is recognized as a significant quality of life indicator. Halpern (1993) reviewed 41 follow-up studies with regard to postschool outcomes of students with disabilities regarding quality of life dimensions. All 41 studies reported findings that highlighted the importance of employment. Choosing to work, and, just as important, choosing the job, task, or location of job, promotes behavioral autonomy, self-determination, and an enhanced quality of life. Choice has been mandated since the Rehabilitation Act of 1992, which required consumers to be active participants in their own rehabilitation program, including making meaningful, informed choices regarding vocational goals, objectives, and services (Patterson et al., 2000). The foundation of services provided to help the consumer obtain and maintain gainful employment was spelled out in the individualized plan for employment. This plan of service is an opportunity for the counselor and the consumer to work together as partners to develop successful program for employment. Informed consent of all decisions made, along with the opportunity to appeal those

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decisions, is provided. The services increase autonomy of the person with a disability, or consumer, by stressing joint involvement and responsibility with the rehabilitation counselor throughout the entire process. Care must be taken to ensure that the process of ensuring choice does not become part of the paperwork. Understanding the importance of choice and work as a part of autonomous functioning is often a challenge for individuals with significant disabilities. The good news is that there now exists convincing evidence that these individuals can achieve increased autonomy through training in the work setting (Wehman, Inge, Revell, & Brooke, 2007). For persons with more severe developmental disabilities, supported employment has focused attention on the central premise of work-related preferences to identify potential jobs. Matching work to work preferences is one of the primary components of a behavior analytic approach for preventing/ reducing challenging behavior that can occur among some workers with significant disabilities. Generally, individuals show less problem behavior when they enjoy the task in which they are engaged (Wehman et al., 2007). Therefore, it can be said when individuals make their own choices, they move closer to an autonomous, self-determined life.

Adult Roles Central to the literature on adulthood is the finding that life in the community is preferred to life near the community (Bierne-Smith, Ittenbach, & Patton, 2002). This message is clear for people with disabilities, as well as those without. As people with disabilities become more self-determined and express behavioral autonomy, the shift must continue toward greater independent and supported living arrangements within their chosen communities. Today’s contemporary movement in independent living, a concept born in the mid-1960s, is legislatively based and promotes the philosophy that “people with disabilities have the right to control their own lives and have access to the same options as people without disabilities. This philosophy is based upon the concepts of disability, esteem and personal value, consumer control and self-determination, self-help and peer support, and political activism” (Rice & Thayer, 1990, p. 17). In a paper prepared by the National Council on Disability (2005), it was written that the “goal is for people with disabilities is to live independently in the community with others; this does not preclude family living or other communal arrangements. It is about choice, autonomy, and participation, not separation from families” (pp. 4–5; emphasis added). Life experiences may differ by person and by disability, but there are several consistent stages that all people encounter as they move through life. Young adulthood represents a time when goals are pursued, friendships are established and maintained, and career and residence is established, regardless of functioning level. For young adults with disabilities, with limited or restricted social opportunities, special occasions such as birthdays, promotions, and family events take on an even larger significance as they help define


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adult roles and greatly affect the quality of one’s early adult life (Bierne-Smith et al., 2002). If young adults with disabilities are supported in their selfdetermined, autonomous choice making, risk taking, and independent living, then enhanced living quality will be experienced for many years. Middle adulthood is loosely determined as the years between 40 and 60. During this period, achievements can be at their maximum for some while others turn toward introspection. Readjusting to life with aging parents is potentially easier for someone who is self-determined and demonstrates behavioral autonomy (making choices and decisions, solving problems, demonstrating independent living skills). The same logic holds true for older adulthood for persons with disabilities. Behavioral autonomy, a lifetime of problem solving and decision making, and an internal locus of control can only make it easier to adapt to these years. Creating a new lifestyle pattern is easier for someone who has not been dependent on others to make choices for them (Bierne-Smith et al., 2002). The final decision to which an individual might exercise self-determination and autonomy is related to end of life. For individuals making this final transition, paternalism by family, caregivers, doctors, and the legal system may override this last autonomous act. This end of life event can be framed within the context of “quality of life” versus “sanctity of life.” Another confounding circumstance to maintaining autonomy might involve physicians who have prejudices involving disabilities or by family members who do not want to let go (Asch, 2005). Advanced directives and informed consent with regard to individuals with disabilities are dependent on definition of capacity to make and communicate choices. For those with mental retardation, Alzheimer’s disease, mental illness, and other forms of compromised cognitive ability, choices regarding end of life care can be problematic and complex. Assessment of decisionspecific capacity, assisted capacity, and in-context capacity are being developed to give this population greater input (Botsford & King, 2005). A lack of oversight regarding withdrawal and withholding treatment, as well as the practice of assisted suicide, is a concern for people with disabilities (Werth, 2005). Efforts by disability rights advocates, consumer direction of long-term care, and the demand that will occur as the baby boomers age will dramatically affect populations needing long-term care as they move toward the end of life phase (Batavia, 2002). To this end, the complexity of end of life care for persons with disabilities with regard to autonomy, selfdetermination, and legal ramifications for those who provide support must be addressed, as these issues are destined to increase in intensity (Botsford & King, 2005).

CONCLUSION Whether we are talking about the home, the school, or the adult-aged environment, it is evident that individuals with disabilities must have the opportunity to make choices and express preferences. The benefits of autonomysupportive environments are numerous, ranging from increased motivation,

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learning, and sense of self-control and worth. It is critical for families, school personnel, and professionals to provide the environment in which individuals with disabilities can act autonomously. It is now imperative that people with disability be provided supportive autonomous environments across their life span. Through the evolution of disability rights, it is clear to see how time and events have changed the thinking of our society. Moving from institutionalization to participating as active citizens has shown that the issue of autonomy has developed and changed views. People with disabilities have fought for their own rights with their own voices and have made things happen. Although there has been much progress, there continues to be a need for selfdetermined individuals to constantly make things happen. The greatest challenge perhaps in the development of control over one’s life for individuals with disabilities is the idea that professionals must believe that individuals have the ability to function autonomously (Phemister, 2001). Without this belief, what chance do people with disabilities have to control their own destiny? Fostering autonomy in individuals with disabilities clearly provides a better quality of life for these individuals. Research supports the need for instruction in choice and self-determination, as well as looking into what happens if we do not develop autonomous individuals. Most individuals develop autonomy as they move through their lives. Part of the human development cycle involves moving from dependence on others to self-direction (Wehmeyer & Kelchner, 1995). However, for some people with developmental disabilities, such skills are not just acquired through life and must be explicitly taught. Perhaps the greatest implication of autonomy is that allowing individuals to be in control of their own lives is the not only a good thing to do, but it is an absolute right of people with disabilities to be given that opportunity.

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Black, A. E., & Deci, E. L. (2000). The effects of instructors’ autonomy support and students’ autonomous motivation on learning organic chemistry: A selfdetermination theory perspective. Science Education, 84, 740–756. Bogdan R. (1986). The sociology of special education. In R. J. Morris & B. Blatt (Eds.), Special education: Research and trends (pp. 344–359). New York: Pergamon. Bondurant-Utz, J. A., & Luciano, L. B. (1994). A practical guide to infant and preschool assessment in special education. Boston: Allyn and Bacon. Botsford, A., & King, A. (2005). End-of-life care policies for people with and intellectual disability. Journal of Disability Policy Studies, 16(1), 22–30. Brazelton, T. B. (1974). Toddlers and parents: A declaration of independence. New York: Dell. Brooke, V., Green, J., Revell, W., & Wehman, P. (2006). Transition planning in the community: Using all of the resources. In P. Wehman (Ed.), Life beyond the classroom: Transition strategies for young people with disabilities (4th ed., pp. 115–116). Baltimore: Brookes. Browning, P. (1997). Transition in action for youth and young adults with disabilities. Montgomery, AL: Wells Printing. Browning, P., & Rhoades, C. (1986). Self-advocacy for people with developmental disabilities: Teachers resource book and five-part video series. Santa Monica, CA: Stanfield. Cardol, M., de Jong, B. A., & Ward, C. (2002). Autonomy and participation in rehabilitation. Disability and Rehabilitation, 24(18), 970–974. Carver, C. S., & Scheier, M. F. (2000). Autonomy and self-regulation. Psychological Inquiry, 11(4), 284–291. Cassidy, J., & Shaver, P. R. (Eds.). (1999). Handbook of attachment: Theory, research, and clinical applications. New York: Guilford. Clapton, J., & Kendall, E. (2002). Autonomy and participation in rehabilitation: Time for a new paradigm? Disability and Rehabilitation, 24(18), 987–991. Clark, E., Olympia, D. E., Jensen, J., Heathfield, L. T., & Jenson, W. R. (2004). Striving for autonomy in a contingency-governed world: Another challenge for individuals with developmental disabilities. Psychology in the Schools, 4(1), 143–153. Commission on Rehabilitation Counselor Certification. (2002). Code of professional ethics for rehabilitation counselors. Retrieved February 15, 2009, from http:// www.crccertification.com/pages/code_of_ethics/10.php. Cook, R. E., Klein, D., & Tessier, A. (2004). Adapting early childhood curricula for children in inclusive settings. Columbus, OH: Pearson/Merrill, Prentice Hall. Connell, J. P. (1990). Self in transition. Infancy to childhood. Chicago: University of Chicago Press. Craig, E. (Ed.). (2005). The shorter Routledge encyclopedia of philosophy. London: Routledge. Crittenden, P. M. (1990). Toward a concept of autonomy in adolescents with a disability. Children’s Health Care, 19(3), 162–168. Deci, E. L. (1980). The psychology of self-determination. Lexington, MA: Heath. Deci, E. L., & Chandler, C. L. (1986). The importance of motivation for the future of LD field. Journal of Learning Disabilities, 19(10), 587–594. Deci, E. L., & Ryan, R.M. (1985). Intrinsic motivation and self-determination in human behavior. New York: Plenum. Deci, E. L., & Ryan, R. M. (1987). The support of autonomy and the control of behavior. Journal of Personality and Social Psychology, 53, 1024–1037. Degener, T. (2000). International disability law—a new legal subject on the rise: The interregional experts’ meeting in Hong Kong, December 13–17, 1999. International Law, 18(1), 180–195.

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DeJong, G. (1979). Independent living: From social movement to analytic paradigm. Archives of Physical Medicine and Rehabilitation, 60(10), 435–436. Ensminger, E. E., & Dangel, H. L. (1992). The Foxfire approach: A confluence of best practices for special education. Focus on Exceptional Children, 24(7). Erikson, E. (1963). Childhood and society. New York: Norton. Field, S. & Hoffman A. (1996). Steps to self-determination. Austin, TX: ProEd. Field, S., & Hoffman, A. (1999). The importance of family involvement for promoting self- determination in adolescents with autism and other developmental disabilities. Focus on Autism and Other Developmental Disabilities, 14(1), 36–41. Field, S., Martin, R., Miller, R., Ward, M., & Wehmeyer, M. (1998). Self-determination for persons with disabilities: A position statement of the division on career development and transition. Career Development for Exceptional Individuals, 21(2), 113–128. Gould, M. (1986). Self-advocacy: Consumer leadership for the transition years. Journal of Rehabilitation, 52(4), 39–42. Guess, D., Benson, H., & Siegel-Causey, E. (1985). Concepts and issues related to choice-making and autonomy among persons with severe disabilities. Journal of the Association for the Severely Handicapped, 10, 79–86. Hahn, H. (1991). Alternative views of empowerment: Social services and civil rights. Journal of Rehabilitation, 57(4), 17–19. Halloran, W. D. (1993). Transition services requirement: Issues, implications, challenge. In R. C. Eaves & P. J. McLaughlin (Eds.), Recent advances in special education and rehabilitation (pp. 210–224). Boston: Andover Medical. Halpern, A. S. (1993). Quality of life as a conceptual framework for evaluating transition outcomes. Exceptional Children, 59, 486–498. Impact. (1994). Special feature on self-advocacy. Impact, 7. Kendall, E., Muenchberger, H., & Clapton, J. (2007). Trends in Australian rehabilitation: Revising its humanitarian core. Disability and Rehabilitation, 29(10), 817–823. Logan, C. R., DiCintio, M. J., Cox, K. E., & Turner, J. C. (1995, October). Teacher and student perceptions of classroom practice. Paper presented at the annual meeting of the Northeastern Educational Research Association, Ellenville, NY. Lundberg, N. R. (2007). Research update: Creating motivational climates. Parks & Recreation, 42(1), 22–26. Martin, E. D. Jr. (2001). Significant disability: Issues affecting people with disabilities from a historical, policy, leadership and systems perspective. Springfield, IL: Thomas. Martin, J. E., & Marshall, L. H. (1995). Choicemaker: A comprehensive selfdetermination transition program. Intervention in School and Clinic, 30, 147–156. Martin, J. E., Marshall, L. H., & Maxson, L. (1993). Transition policy: Infusing selfdetermination and self-advocacy into transition programs. Career Development and Exceptional Individuals, 16, 53–61. Martin, J. E., Marshall, L. H., Maxson, L., & Jermann, P. (1997). ChoiceMaker and Self-Determination Series. Longmont, CO: Sopris West Educational Services. Martin, J., Woods, L., Sylvester, L., & Gardner, J. (2005). A challenge to selfdetermination: Disagreement between the vocational choices made by individuals with severe disabilities and their caregivers. Research & Practice for Persons with Severe Disabilities, 30 (3), 147–153. Meininger, H. P. (2001). Autonomy and professional responsibility in care for persons with intellectual disabilities. Nursing Philosophy, 2, 240–250. National Council on Disability. (2005). Living independently and in the community: Implementing lessons from the United States. Washington DC: Author.


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Nirje, B. (1972). The right to self-determination. In W. Wolfensberger (Ed.), Normalization: The principle of normalization in human services (pp. 176–200). Toronto: National Institute on Mental Retardation. Parent, W. S. (1993). Quality of life and consumer choice. In P. Wehman (Ed.), The ADA mandate for social change (pp. 19–44). Baltimore: Brookes. Patterson, J. B., Patrick, A., & Parker, R. M. (2000, Summer). Choice: Ethical and legal rehabilitation challenges. Rehabilitation Counseling Bulletin, 43(4), 203–208. Retrieved March 7, 2007 from www.worksupport.com/documents/ proed9.html.htm. Perske, R. (1972). The dignity of risk. In W. Wolfensberger (Ed.), Normalization: The principle of normalization in human services (pp. 194–200). Toronto: National Institute on Mental Retardation. Pfeiffer, D. (2002) The philosophical foundations of disability studies. Disabilities Studies Quarterly, 22(2), 3–23. Phemister, A. A. (2001). Revisiting the principles of free will and determinism: Exploring conceptions of disability and counseling theory. Journal of Rehabilitation, 67(3), 8–12. Rasch, J. (1996) World wide web review guide for the CRC examination: principles of ethical practice. Retrieved April 5, 2007, from luna.cas.usf.edu/~rasch/ethics. html. Rhoades, C. M. (1986). Self-advocacy. In J. Wortis (Eds.), Mental retardation and developmental disabilities (vol. 14, pp. 312–319). New York: Elsevier. Rice, B. D., & Thayer, T. (Eds.). (1990). Vocational rehabilitation services in independent living centers. 17th Institute on Rehabilitation Issues. Fayetteville, AR: Research and Training Center in Vocational Rehabilitation, University of Arkansas. Seigleman, M. (1975). Helplessness. San Francisco: Freeman. Serna, L., & Lau-Smith, J. (1995). Learning with purpose: Self-determination skills for students who are at risk for school and community failure. Intervention in School and Clinic, 30, 142–146. Shevin, M., & Klein, N. K. (2004). The importance of choice-making skills for students with severe disabilities. Research and Practice for Persons with Severe Disabilities, 29(3), 161–168. Shogren, K. A., & Turnbull, A. P. (2006). Promoting self-determination in young children with disabilities: The critical role of families. Infants & Young Children, 19(4), 338–352. Stefanou, C. R., Perencevich, K. C., DiCintio, M., & Turner, J. C. (2004). Supporting autonomy in the classroom: Ways teachers encourage student decision making and ownership. Educational Psychologist, 39(2), 97–110. Szymanski, E. M. (1993). Transition: Life span and life space considerations. Exceptional Children, 60, 402–410. Thoma, C. A., & Sax, C. L. (2003). Self-determination: What do rehabilitation counseling students know and where do they learn it? Journal of Vocational Rehabilitation, 19, 89–94. Turnbull, A. P., & Turnbull, R. (2006). Self-determination: Is a rose by any other name still a rose? Research & Practices for Persons with Severe Disabilities, 31(1), 83–88. Turner, E. (1995). Self-advocacy: A key to self-determination. Journal of Vocational Rehabilitation, 5, 329–336. Turner, P. H. (2000). The development nature of parent-child relationships: The impact of disabilities. In E. D. Fine & R. L. Simpson (Eds.), Collaboration with parents and families of children and youth with exceptionalities (pp. 103–130). Austin, TX: Pro Ed.

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Vehmas, S. (2004). Ethical analysis of the concept of disability. American Association on Mental Retardation, 42(3), 209–222. Wall, M. E., & Dattilo, J. (1995). Creating option-rich learning environments: Facilitating self-determination. Journal of Special Education, 29(3), 276–294. Ward, M. J. (1992). OSERS initiative on self-determination. Interchange, 12(1), 1–7. Champaign: Transition Institute, University of Illinois at Urbana-Champaign. Ward, M. J. (1993). Self-determination: A means to an end. Impact, 6(4), 8. Waters, E., Wippman, J., & Stroufe, L. (1979). Attachment, positive affect, and competence in the peer group; two studies in construct validation. Child Development, 50(3), 821–829. Wehman, P. (2006). Life beyond the classroom: Transition strategies for young people with disabilities (4th ed.). Baltimore: Brookes. Wehman, P., Inge, K., Revell, W., & Brooke, V. (2007). Real work for real pay: Inclusive employment for people with disabilities. Baltimore: Brookes. Wehmeyer, M. L. (1992). Self-determination and the education of students with mental retardation. Education and Training in Mental Retardation, 27, 302–314. Wehmeyer, M. L. (2004) Beyond self-determination: Causal agency theory. Journal of Developmental and Physical Disabilities, 16(4), 337–359. Wehmeyer, M., Agran, M., & Hughes, C. (1998). Teaching self-determination to students with disabilities. Baltimore, MD: Brookes. Wehmeyer, M. L., & Berkobien, R. (1991). Self-determination and self-advocacy. A case of mistaken identify. Newsletter of the Association for Persons with Severe Handicaps, 17(7), 11. Wehmeyer, M. L., & Garner, N. W. (2003). The impact of personal characteristics of people with intellectual and developmental disability on self-determination and autonomous functioning. Journal of Applied Research in Intellectual Disabilities, 16(4), 255–265. Wehmeyer, M. L., & Kelchner, K. (1995). Whose future is it anyway? Arlington, TX: ARC. Werth, J. L. (2005). Concerns about decisions related to withholding/withdrawing life-sustaining treatment and futility for persons with disabilities. Journal of Disability Policy Studies, 16(1), 31–37. West, M. D. (1995). Choice, self-determination and VR services: Systemic barriers for consumers with severe disabilities. Journal of Vocational Rehabilitation, 5, 281–290. Whaley, K. T., & Bennett, T. C. (1991). Promoting engagement in early childhood special education. Teaching Exceptional Children, 23(4), 51–54. Wolfensburger, W. (1972). The principle of normalization in human services. Canada: National Institute on Mental Retardation. Zhang, D. (2005). Parent practices in facilitating self-determination skills: The influences of culture, socioeconomic status, and children’s special education status. Research and Practice for Persons with Severe Disabilities, 30(3), 154–162.

CHAPTER 3

Children Who Care for Their Parents: The Impact of Parental Disability on Young Lives Kenneth I. Pakenham

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his chapter addresses an emerging global social priority: the potential adverse impacts on children and adolescents of caring for a family member with a disability. Unpaid caregiving represents an important economic resource and carers a vital labor force. For example, in the United States in 2004, family carers contributed an estimated $306 billion of unpaid caregiving (Becker, 2007). There are no such estimates in any country of the hidden economic or social costs of children’s unpaid caregiving. However, the research to date does suggest that many young carers suffer in ways that compromise their well-being. This chapter provides an overview of research, theory, and practice regarding children and adolescents caring for a parent who has a physical or mental disability and/or illness.

DEFINITION Researchers, policy developers, and service providers have used a wide variety of operational definitions of young carers. Young carers have been defined in accordance with the level, intensity, and type of duties they assume and the associated restrictions they encumber as a result. For example, Becker (2007) argued that the term should be used precisely and deliberately and provided the following definition: Children and young persons under 18 who provide or intend to provide care, assistance or support to another family member. They carry out, often on a regular basis, significant or substantial caring tasks and assume a level of responsibility that would usually be associated with an adult. (p. 378)

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In this definition the terms regular, significant, and substantial are not operationalized and what constitutes caring tasks and adult levels of responsibility is not defined. Becker (2007) suggested a continuum of young caregiving with the caregiving at one end being typical of what most children contribute in family life and at the other end characterized by more substantial and regular caregiving. However, it is not clear at what point on this continuum caregiving warrants the designated label of “young carer.” In contrast to this position, others have defined young carers more broadly and argued that restrictive definitions limit the exploration of young people in different caregiving situations and risk excluding those who may be providing care and who may benefit from services (Newman, 2002). In support of this approach, some studies have not required potential participants to self-identify as carers and have not imposed definitions on what constitutes a young carer. For example, one such study found that Australian children of a parent with a disability/illness reported significantly greater adverse caregiving impacts and poorer adjustment than children of healthy parents regardless of level of caregiving (Pakenham, Bursnall, Chiu, Cannon, & Okochi, 2006). In another study, Siskowski (2006) surveyed 12,681 students in grades 6 to 12 in Florida and did not require participants to self-identify as carers. She found that students with a family health situation1 (6,714) outnumbered those without a family health situation by 20 percent. Most (92 percent) of the students with a family health situation indicated that they engaged in caregiving, and almost a quarter of those with a family health situation indicated that it adversely affected their learning. Hence, given the very large number of children exposed to family health situations who report involvement in caregiving and corresponding adverse educational impacts, it is important not to have a definition of young carers that is too restrictive. Although young people may care for any family member or friend with a disability/illness, the majority of care recipients are parents, particularly mothers (Dearden & Becker, 2004; Gays, 2002). In a national UK survey of known young carers, Dearden and Becker (2004) found half of all conditions requiring care were of a physical health nature, 29 percent were mental health concerns, 17 percent were learning difficulties, and 3 percent were sensory impairments. Therefore, the majority of young carers are caring for parents with either a physical or mental disability/illness. Research has typically focused on young carers aged from 5 to 18 years with the average age of young carers being approximately 12 or 13 (Carers Australia, 2002). However, there is a growing interest in the 18- to 25-yearold group of young adult carers. Levine and colleagues (2005) argued that this group is particularly important because they are at a critical developmental stage. For many of them, life plans are not solidified, education will extend into their twenties, and marriage and child-rearing is likely to occur later.

KEY RESEARCH TRADITIONS IN THE YOUNG CARER FIELD There are three key bodies of research that are relevant to young caregiving. First, one body of research has examined the impact of a specific parental

CHILDREN WHO CARE FOR THEIR PARENTS

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disability/illness (e.g., Compas, Worsham, Ey, & Howell, 1996) without taking into account the caregiving roles of these youngsters (e.g., Fals-Stewart, Kelley, Fincham, Golden, & Logsdon, 2004). Reviews of research in this field have suggested that parental disability/illness is associated with moderate psychological distress and maladjustment in children (Armistead, Klein, & Forehand, 1995; Pedersen & Revenson, 2005; Worsham, Compas, & Sydney, 1997). There is also evidence from this body of research indicating that parental disability/illness disrupts family roles and functioning, and those children who take on more of the family’s responsibilities are more likely to experience higher psychological distress (Grant & Compas, 1995). However, in what Aldridge and Becker (1993b) have termed a “literature of omission,” the research has tended to ignore young people’s caregiving responsibilities. A second body of research has specifically examined young caregiving and is largely rooted in the medical sociology literature. Most studies in this area are anecdotal, descriptive, and rely on focus group and/or interview data (Aldridge & Becker, 1994; Becker, 1995; Dearden & Becker, 2000). Within this body of research, there are many qualitative studies that have given important insights into young carers’ experiences and the outcomes for these children (e.g., Bolas, Van Wersch, & Flynn, 2007). There are also a number of large-scale surveys that have provided extensive descriptive biographical data on young carers (Dearden & Becker, 1995, 1998, 2004; Siskowski, 2006). However, many of these studies have failed to include appropriate comparison groups and have been conducted in the United Kingdom by Becker and colleagues with samples that have been recruited from young carer support services (Dearden & Becker, 1995, 1998, 2004). A third body of research has approached young caregiving from a disability rights perspective. According to these researchers, young caregiving is not exclusively the result of disability/illness in families but occurs fundamentally due to a lack of support for families who live in these circumstances (Blackford, 1999; Olsen, 1996). When family members with chronic health problems are inadequately supported, children will often stand in as a natural response to family need (Gopfert, Webster, & Seemen, 2004).

PREVALENCE OF YOUNG CARERS It is estimated that there are 8.4 million parents with disabilities in the United States with children under 18 years living at home, and there are more mothers than fathers with disabilities (McNeil, 1993). The combined prevalence of serious physical or mental illness in parents of children between the ages of 4 and 18 years in a population-based study in Germany was 6.4 percent (Barkmann, Romer, Watson, & Schulte-Markwort, 2007). Taking a global perspective on young carers, Becker (2007) reviewed the research evidence from the United Kingdom, Australia, and the United States and from developing countries in Sub-Saharan Africa. Becker (2007) claimed that in every group of 100 children in the three developed countries, up to 4 will be young carers, whereas in developing countries, especially those with extensive health problems (e.g., HIV/AIDS), there are likely to be many more. Becker

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(2007) showed that 2 percent to 4 percent of all children in Australia, the United Kingdom, and the United States can be referred to as young carers. Estimates of the number of young carers increase if 18- to 25-year-olds are included. For example, in Australia there are 169,900 young carers under the age of 18 (3.6 percent of all children under 18; Australian Bureau of Statistics [ABS], 2003). This figure rises to 347,700 carers under the age of 25, or 5.2 percent of all people in this age group (ABS, 2003). There are approximately 229,309 young carers in the 18- to 25-year range in the United Kingdom (Office for National Statistics, 2003) and up to 5.5 million in the United States (Levine et al., 2005). However, in all these countries, these figures are likely to be underestimates because of the hidden nature of young caregiving and the tendency for young people not to self-identify as carers. Furthermore, the incidence of young caregiving is expected to rise over the next decades in many parts of the world due to advances in medical technology, increases in the number of sole-parent households, a growing population of elderly persons, and increases in the number of people living with chronic illnesses and disability (Aldridge & Becker, 1993b; Shifren & Kachorek, 2003).

PARENTING WITH A DISABILITY Young caregiving needs to be understood in the context of the difficulties of parenting with disability/illness. Many parents with disability face harsh socioeconomic circumstances (Olkin, Abrams, Preston, & Kirshbaum, 2006) with particular needs related to employment, recreation, and transportation. There are also numerous difficulties associated with parenting that may stem from the disability/illness. Parenting can be disrupted by illness exacerbations or fluctuations in disability (e.g., relapses in multiple sclerosis [MS]), cognitive impairment, fatigue, and mobility problems. These in turn may produce other parenting-related difficulties, including lack of family compatible activities, changes in family roles (e.g., reassignment of parental tasks), and separation from children due to hospitalizations (Deatrick, Brennan, & Cameron, 1998). Hence, it is understandable that many parents with disability/illness are concerned about the impact of their condition on their children and report difficulties associated with parenting (De Judicibus & McCabe, 2004). Research into parents with disabilities and their children has been criticized for perpetrating a view of parents with disability as incapable and their children as victims (Blackford, 1999; Kirshbaum & Olkin, 2002). An alternative view proposed by the disability rights perspective is that with relevant resources and supports, parental disability in and of itself need not present a significant risk factor. Indeed, parents with disability have been shown to develop parenting practices that help overcome some of the challenges they face (Olsen & Clarke, 2003; Prilleltensky, 2004). Stressors such as financial difficulties and lack of formal supports can compound difficulties related to parental disability. Impairment in parenting capacity is likely to vary considerably and may occur only in extreme cases where disability/illness directly impairs the functioning necessary for parenting.


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In dual-parent households, the parenting of the healthy parent should also be considered given that they often take on additional parenting responsibilities (Steck, Amsler, Kappos, & Burgin, 2001). However, most research into parenting and disability has considered the parent with disability, and in most cases only mothers who have disability, whereas fathers with disability are often excluded.

THE NATURE OF YOUNG CAREGIVING Many parents who live with chronic disability/illness rely on their children for immediate, flexible, and continuous care and support. However, informal caregiving activities are often hidden, immersed in the privacy of family interrelations and fueled by care, attachment, duty, and reciprocity. At one end of the caregiving continuum is the level of caring that all children are involved in to some extent throughout their childhood. Some degree of caring and family responsibility in childhood would be viewed as a reciprocal part of family life and as necessary for healthy development. Thus, children who do not have a parent with a disability/illness may also take on responsibilities at home, which is normal and desirable. At the other end of the caregiving continuum is a small group of children who take on substantial, regular, or significant caregiving roles. There is evidence to indicate that many children who undertake levels of caregiving at this end of the continuum of caregiving are more likely to experience a range of negative impacts. Research shows that most youth who have a parent with a disability/illness are likely to undertake a range of tasks, including domestic care (e.g., cooking, cleaning), general care (e.g., managing finances, dispensing medication), emotional support (e.g., comforting the parent), personal and intimate care (e.g., toileting, showering), and child care (e.g., feeding and supervising siblings) (Dearden & Becker, 1995; Ireland & Pakenham, in press). There is evidence that even children at the low end or middle of the caregiving continuum may be at risk of adverse outcomes (Pakenham et al., 2006). However, few studies have actually examined whether children of a parent with disability/illness take on greater caregiving responsibilities than children of healthy parents.2 Pakenham and colleagues compared a mixed sample of 100 youth with a parent who has disability/illness to 145 youngsters who had healthy parents. Results showed that the youths with a parent with disability/illness undertook significantly greater levels of family tasks and responsibilities than those with a healthy parent. This finding was replicated when a subsample of 41 children of parents with MS were compared to the 145 children of healthy parents (Pakenham & Bursnall, 2006). Warren (2007) compared 378 children from the general population who were not living with a parent who had a disability/illness with 12 youths who were identified as young carers by agencies or professionals. Warren reported that compared to other children, the young carers performed a wider range of domestic, emotional, general, nursing care, and intimate care tasks, and they spent longer on these activities. Of all the care tasks undertaken, the provision of personal and intimate care most clearly distinguished young carers from

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the comparison group. Young carers were more likely to regularly carry out a wide range of personal care tasks, including providing health care (e.g., giving medications and injections), assisting with mobility (e.g., get in and out of bed), dressing and undressing, showering, bathing, and toileting. Ireland and Pakenham (in press) found that young carers with a parent with physical disability/illness were more likely to perform personal and intimate care tasks than those who had a parent with mental disability/illness. These findings stand in contrast to those obtained by Olkin et al. (2006), who used a survey to compare 246 adolescents of parents with disability to 37 adolescents of parents without disability. Data were also obtained from the parents of the adolescents in each group. The authors found no differences in the number of household chores reported by the adolescents or their parents across the two groups. The differences in findings between Olkin’s study and the other two studies may be due to several differences in measurement and sampling. For instance, Olkin et al. limited their sample to parents with disabilities rather than illnesses (75 percent physical or systemic disabilities; 25 percent sensory disabilities). They also used a narrow age range for their children, and used both parent and child data, which might have influenced the reporting of the young carers. Despite some inconsistencies in the literature, Becker (2007) claimed there is now sufficient evidence to show that young carers do differ from other children in both developed and developing countries. These differences include the extent of their caregiving, its nature, the time spent on caregiving, and the adverse outcomes in social, economic, and developmental areas. However, there is a lack of reliable quantitative data indicating what aspects of caregiving are linked with poorer outcomes for young carers at various ages. For example, Pakenham et al. (2005) found that psychosocial and emotional care tasks (e.g., managing inappropriate behaviors, keeping care recipient occupied) were stronger predictors of distress in a mixed sample of adult carers than activities of daily living (e.g., dressing, bathing) or instrumental care tasks (e.g., transportation, housework). It is possible that similar differences might occur for young carers.

FACTORS THAT PULL AND PUSH CHILDREN INTO YOUNG CAREGIVING The availability, willingness, and effectiveness of children as carers has been proposed as one reason that children perform these roles (Aldridge, 2006). Additionally, children may adopt caregiving roles as task-oriented ways of coping with worry and stress (Gopfert et al., 2004). Stetz, Lewis, and Primomo (1986) found that role distribution was the most common coping mechanism used by families that experience parental disability/illness. Importantly, when a loved one suffers from a health concern, children and young people reported that they wanted to provide support (Banks et al., 2002) and that doing so was a valued part of their family life (Thomas et al., 2003). Nevertheless, many young people perceive having little or no choice in taking on the caregiving role. Pakenham et al. (2006) found that approximately one


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third of children of a parent with disability/illness indicated no choice or little choice, just over a third indicated quite a lot of choice, and one third indicated they were free to choose whether or not they helped their parent. This lack of choice by some may be due to financial difficulties that restrict the family from receiving outside help or election of the child into the caregiving role by other family members (Aldridge & Becker, 1993b). Indeed, a number of social issues like poverty, deinstitutionalization, the aging population, increases in sole-parent households, and the inflexibility of formal support services, and the lack of adequate supports have been highlighted as key factors in limiting children’s choice about their engagement in caregiving (Aldridge, 2006; Becker, 2007; Shifren & Kachorek, 2003). The interaction between the lack of support services and financial resources often means that young carers are drawn into caring simply because there is no alternative. Less choice in taking on the caregiving role has been shown to be related to more caregiving responsibilities, greater obligation to care, and more caregiving discomfort (Pakenham et al., 2006). A child’s involvement in caregiving may also be influenced by the nature of the parental disability/illness. For example, greater parental impairment, more than one parental disability/illness, parental mental illness (versus physical illness/disability), and greater unpredictability of parental disability/illness have been shown to be related to adverse caregiving experiences (Pakenham et al., 2006). A range of other factors that may also be related to taking on the caregiving role include co-residency, family structure, gender, and socialization. It is likely that several of these factors interact to pull and push children into caregiving. Further research is required to provide greater understanding of the relative strength of these factors and how they might interact to shape the young caregiving role.

THE EXPERIENCE OF YOUNG CAREGIVING Descriptive studies in the young carer field have identified numerous themes associated with young caregiving, including the adult roles assumed by young carers; the restrictions on leisure, social, and schooling activities; the impact on the family environment; relentless and inescapable caregiving; isolation; perceived maturity; and distress (Aldridge & Becker, 1993a; Bolas et al., 2007). Pakenham and colleagues (2006) undertook quantitative research that explored these themes. Based on qualitative data and a literature review, these researchers developed a questionnaire called the Young Carer of Parents Inventory (YCOPI). Analyses performed on the YCOPI revealed eight reliable and valid factors that described the diverse experiences of young carers. Overall, the YCOPI factors were representative of the range of young caregiving themes reported in prior research. The eight factors comprising the YCOPI are summarized in Table 3.1. This table provides a summary description of the young caregiving theme reflected by each factor. The range of YCOPI factors points to the complex nature of young caregiving. Prior research has provided important but largely qualitative data on the experience of young caregiving. The YCOPI “unpacks” this often dense and variable descriptive qualitative data, charts the key components of the

46 Table 3.1

THE CONTEXT: ENVIRONMENTAL, SOCIAL, AND CULTURAL CONSIDERATIONS Young Carer of Parents Inventory (YCOPI) Factors and Themes

YCOPI Factor Label

Theme

Caregiving responsibilities

Reflects the family tasks that young carers may assume and their feeling responsible for performing them due to expectations. Reflects the “adult child” theme and how taking on adult roles within the family can foster a sense of independence and personal growth. Reflects worry and hypervigilance about the parent’s safety and health, and monitoring of their parent for signs of health changes. Reflects the interference of the caregiving role in many areas (e.g., school, employment, leisure, and socializing). Reflects the “hidden” nature of young caregiving, feelings of aloneness and difficulties in sharing caregiving experiences with others. Reflects relentless and inescapable caregiving, how young carers feel compelled to care for their parent and the associated guilt when they engage in noncaregiving activities. Reflects the distress and stigma associated with caregiving. Reflects the positive outcomes of young caregiving; the enhanced self-efficacy through the development of new skills and knowledge.

Perceived maturity

Worry about parents

Activity restrictions

Isolation

Caregiving compulsion

Caregiving discomfort Caregiving confidence

young caregiving experience, and enables these experiences to be quantified for research purposes.

THE IMPACTS OF YOUNG CAREGIVING AND PARENTAL DISABILITY/ILLNESS Children pass through many distinct developmental stages, each with a characteristic set of biological, psychological, and social demands and issues. For example, psychological development in adolescence involves tasks such as achieving independence from parents, adopting peer codes and lifestyles, and assigning increased importance to body image (Lerner, 2002). Parental disability/illness and young caregiving can impact on the child’s behavioral, emotional, social, educational, and physical development. In general, the research has tended to focus on the negative impacts of parental disability/illness on children (Olkin et al., 2006; Olsen, 1996). Most young carer research has focused on emotional distress as the key indicator of adjustment. More recent research has assessed young carer adjustment in both positive and negative domains. The dimensions of the YCOPI reflect the mix of negative (e.g., caregiving discomfort and caregiving compulsion) and positive (e.g., caregiving confidence and perceived maturity) impacts of young caregiving.


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Negative Impacts Evidence to date has suggested that young caregiving can have an adverse impact on children, which can affect their development and transition to adulthood (Dearden & Becker, 2000). Indeed, there is evidence that for some people the adverse impacts of young caregiving persist well into adulthood (Levine et al., 2005). The negative effects of young caregiving have been reported in numerous areas: psychological, physical, social, family, education, and leisure (Dearden & Becker, 2004). Overall, reviews of studies that have examined the association between parental disability/illness and the adjustment outcomes of children without examining the role of young caregiving have concluded that parental disability/ illness is associated with elevated anxiety and depression and low self-esteem (Armistead et al., 1995; Grabiak, Bender, & Puskar, in press; Pedersen & Revenson, 2005; Worsham et al., 1997). Barkmann et al. (2007) found that children aged 4 to 18 years of parents with serious physical illness were at higher risk for internalizing problems (depression, anxiety, and somatic complaints) than externalizing problems (attention problems and delinquent behavior). Several studies have shown that children of parents with mental disability/illness are at greater risk for adverse adjustment outcomes compared to children of parents with physical disability/illness (Anderson & Hammen, 1993; Barkmann et al., 2007; Roy, 1990). There are fewer quantitative studies that have examined the negative impact of young caregiving. Several studies have compared young carers to children of healthy parents. Banks et al. (2002) found that young carers reported higher levels of depression and lower self-esteem than children of healthy parents. Pakenham et al. (2006) found that compared to children of healthy parents, young carers reported more adverse caregiving experiences and higher levels of somatic complaints. Young carers may also experience physical health problems related to their caregiving. In particular, young carers are at risk of injuries associated with limited sleep, carrying, lifting, and other physical demands (Carers Australia, 2002). Regarding social and economic outcomes, young carers compared to other children are more likely to have restricted opportunities for social, recreation, and extra-education participation and be more concerned about their future financial security (Warren, 2007). Siskowski (2006) found that 67 percent of young carers reported their participation in caregiving activities had an effect on their academic performance at school. She also found that students who were black and those who were male were more likely to report adverse impacts on education from either living at home with someone needing special medical care or actively participating in caregiving activities. Qualitative studies have indicated that young carers experience stigma related to their caregiving role and by association with a family member’s disability (Bolas et al., 2007; Gullekson, 1992). This has been described by Goffman (1963) as “courtesy stigma,” which occurs when a portion of the stigma experienced by the person with disability is shared with family members by virtue of their proximity. There is some evidence indicating that young carers engage in stigma concealment (Bolas et al., 2007), which is likely to

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lead to secrecy and withdrawal. Indeed, stigma may play an important role in the isolation and restricted peer relations often reported by young carers and may interfere with important developmental processes that are sustained by peer relations, such as autonomy and individuation beyond the family unit (Bolas et al., 2007). In ongoing research, Pakenham and colleagues examined stigma in 41 children aged 10 to 20 years (average age 13.6) who had a parent with MS. Results showed that children who perceived stigma related to their parent’s disability were more likely to report behavioral difficulties, less prosocial child behavior, and less secure attachment to the parent with MS. The level of stigma perceived by the child was associated with the severity of the parental disability. Stigma appears to be an important aspect of young caregiving with potential detrimental impacts on the child’s behavior, socializing, and quality of the relationship with the parent. However, few studies have explored stigma in young carers.

Positive Impacts Research has been criticized for focusing on psychopathology and the negative impacts of caregiving on children of a parent with disability. However, anecdotal reports (Blackford, 1999) and qualitative data (Bolas et al., 2007) have indicated positive outcomes of caregiving, including perceived maturity and a sense of pride and personal accomplishment about their role as carer. Hence, in recent years there has been a growing interest in the positive outcomes and resilience of young carers. Caring has been conceptualized as both a risk factor and a form of resilient behavior (Evans, 2005; McConnell Gladstone, Boydell, & McKeever, 2006). A resilience approach shifts the focus from vulnerability to understanding the protective factors that help individuals cope in situations of adversity and emphasizes the active role taken by engaging with such factors. Pakenham and colleagues (2006) found that compared to children of healthy parents, young carers reported higher perceived maturity. Olkin et al. (2006) found that in comparison to parents without disabilities, parents with disabilities reported that their teenage children were more comfortable around people with disabilities. However, in both groups parents did not differ on their reports of other positive characteristics (e.g., empathy, independence, problemsolving abilities, and resilience) attributed to their adolescent children. Recent research has investigated the benefits of adult caregiving (McCausland & Pakenham, 2003; Pakenham, 2005), and benefit finding has been found to be associated with positive adjustment outcomes (e.g., positive affect and life satisfaction) in both cross-sectional (Pakenham, 2005) and longitudinal studies (Pakenham & Cox, in press). Although qualitative studies have shown that young carers report benefits from their caregiving roles (Beach, 1997), few published quantitative studies have examined benefit finding in young caregiving. One exception is a series of studies by Pakenham and colleagues. These researchers developed an 18-item Benefit Finding Scale (BFS) that was derived from adult carer benefit finding data (Pakenham, 2005). Items that reflected the following benefit-finding themes included


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insights into illness and hardship, caregiving gains, personal growth, strengthening of relationships, appreciation of life, health gains, spiritual growth, and positive changes in personal goals (Pakenham, Chiu, Bursnall, & Cannon, 2007). Higher benefit finding was related to higher positive affect but was unrelated to life satisfaction and distress. Benefit finding was also related to greater reliance on acceptance, problem solving, and seeking social support coping strategies and less reliance on denial coping. Interestingly, benefit finding was unrelated to age, indicating that children as young as 10 years are able to find benefits associated with caregiving.

Predictors of Outcomes There is marked variation in the outcomes for young carers, which has led researchers to consider factors that might predict young carer adjustment. Such variations may be due to a range of factors that define the caregiving context, including (a) characteristics of the parent and his or her condition (e.g., type of illness/disability, level of parental impairment, predictability of the parent’s illness/disability), (b) characteristics of the young carer (e.g., gender, age), (c) characteristics of the caregiving role (e.g., choice in caregiving, type of care tasks, caregiving duration), (d) characteristics of the parent– child relationship (e.g., frequency of contact with the parent, co-residence), (e) characteristics of the family (e.g., single parent, number of children, extended family), and (f) social factors (e.g., access to services). To date, many of these factors have not been systematically examined as potential predictors of young carer adjustment. However, there is evidence to suggest that poorer young carer adjustment outcomes are related to (a) excessive or long-term caregiving, (b) little or no perceived choice in caregiving, (c) inadequate (informal and formal) supports, (d) higher levels of parental disability or impairment, and (e) presence of parental mental illness. The relative strength of these factors and the interplay among them in predicting young carer adjustment outcomes over time have not been systematically investigated. There are also a range of theoretical constructs that may predict young carer outcomes. Theoretical frameworks that have been used to guide the identification of variables that might predict young carer adjustment are summarized next. However, it should be noted that there is a dearth of theory driven research into young carers.

THEORETICAL FRAMEWORKS FOR UNDERSTANDING YOUNG CARERS Contextual Process Models Stress and Coping Much of the research that has examined the role of coping in adaptation to adult caregiving has been guided by Lazarus and Folkman’s (1984) stress and coping theory. Although various stress process models of caregiving have been derived from this theory, most are based on the premise that adjustment to caregiving is determined by the caregiving context and three mediational

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processes: appraisal, coping strategies, and coping resources. Although there is support for the application of the model to adult caregiving (Goode, Haley, Roth, & Ford, 1998; Pakenham, 2001), only one published study has used it to guide research into young caregiving (Pakenham et al., 2007). Nevertheless, several studies have used the model to explain the process of adaptation to stress associated with having a parent with an illness/disability (e.g., Langrock, Compas, Keller, Merchant, & Copeland, 2002). Consistent with most stress and coping models of caregiving, appraisal, coping strategies, and coping resources are the key determinants of adjustment to young caregiving. Appraisal is an evaluative process that reflects the person’s subjective interpretation of the event. The appraisal of an event as stressful will generate stress, which may exceed the coping skills and resources available to the person. Coping resources are relatively stable characteristics of an individual’s environment (e.g., social support) and disposition (e.g., optimism), and refer to what is available when an individual evaluates a situation and develops his or her coping strategies. Lazarus and Folkman (1984) refer to coping strategies as “constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person” (p. 141). In general, findings from adult carer studies suggest that better carer adjustment is associated with lower stress appraisals, higher social support, less reliance on avoidant coping and greater reliance on problem-focused coping (e.g., Pakenham, 2001). Many studies that have used the stress and coping model to examine the process of adaptation to stress associated with having a parent with an illness/disability support these findings (e.g., Compas et al., 1996; Langrock et al., 2002). Pakenham et al. (2007) also found support for the model with young carers. Specifically, social support was the strongest predictor of adjustment, whereas coping strategies emerged as weaker predictors and stress appraisal was unrelated to adjustment.

Family Ecology Framework Pedersen and Revenson (2005) have proposed a family ecology model for understanding adolescents’ reactions to parental illness. The framework draws on general systems theory, human ecology, and stress and coping theory. This framework describes a set of pathways through which serious parental illness affects adolescent well-being and family functioning. According to this framework, parental disability/illness characteristics (e.g., type and severity of illness) affect family functioning and adolescent well-being indirectly through various individual factors (e.g., stigma, coping strategies) and family-level factors (e.g., family role distribution). The individual- and familylevel factors may also interact with each other; for example, the adolescent’s coping strategies may not be congruent with those of other family members. These pathways may also be affected by various contextual variables, including parent’s gender, the family’s attachment style, and youth developmental stage. While Pedersen and Revenson (2005) review research that provide support for many of the pathways within the framework, because it has only recently been proposed, the framework has not been fully tested.


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Family Systems-Illness Model Rolland (1984) developed the family systems-illness model, which he has applied to parental illness (Rolland, 1999). The model was developed within a broad family systems perspective. The model describes the dynamic interplay of three dimensions: (1) a psychosocial typology of illness and disability (based on onset, course, outcome, incapacitation, and uncertainty), (2) time phases of the illness (crisis, chronic, and terminal), and (3) family system variables (e.g., life cycle phases such as marriage, child-rearing, and children leaving home). The model also includes individual life cycles, multigenerational patterns of behavior, and belief systems that may be influenced by culture, ethnicity, and gender. The model is largely descriptive and is not embedded in empirical research and as such has not been tested in the young carer field. The model appears to have been developed primarily as a framework for practitioners working within a family systems therapy approach with families affected by parental illness.

Pathology and Risk Models Parentification Some researchers have conceptualized the caring roles among children as parentification (an attachment disorder) or a pathological role reversal (Chase, 1999; Earley & Cushway, 2002; Thomas et al., 2003). Parentification occurs when children are obligated to care and adopt inappropriate (adultlike) responsibilities for their parent as a direct result of parental incapacity (Gopfert et al., 2004). Though this type of role transfer may occur in extreme cases, for the majority of families, caring does not mean children internalize the concern and sense of responsibility parents have for their welfare (Keith & Morris, 1995). Aldridge and Becker (2003) maintain that all parent–child relationships are reciprocal and interdependent by nature, and regardless of some role adaptation young carers in their research continued to see their parents as parents. Furthermore, as Walmsley (1993) points out, care and dependence are false dichotomies. She argues that caring is a continuum more complex than a linear division between care and dependence and that we are all dependent to a greater or lesser extent on others. Carers are also recipients of care and vice versa and therefore parents may be care recipients but also continue to provide care (Aldridge, 2006). Young caregiving is more accurately conceptualized as a form of functional “adaptive parentification,” which results from acute stress rather than a pathological role reversal (Chase, 1999).

Attachment Theory Attachment is a special bond of substantial emotional intensity between two people and is a necessary precondition of healthy psychosocial development (Gopfert, Webster, Pollard, & Nelki, 1996). A fundamental principle of attachment theory is that quality of care leads to differences in the quality of attachment (Weinfield, Sroufe, Egeland, & Carlson, 1999). Attachment can be characterized as either more or less secure, with mutual care, reciprocal

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connection, and emotional closeness characterizing secure attachment (Bostik & Everall, 2006). According to Bowlby (1969), it is the sensitive responsiveness of the carer to the child that leads to secure attachment. Therefore, the securely attached child perceives his or her attachment figure as reliably available and effective in responding to his or her needs. Parental disability/illness has been acknowledged as one factor that can impinge on the carer’s ability to sensitively respond to the child’s needs (Pedersen & Revenson, 2005). However, only a few studies have examined attachment in children of parents with a disability/illness, and the majority have focused on mothers with mental illness. These studies suggest that many mothers with serious mental disorders report insecure attachments in past or present relationships and that their children are often insecurely attached to them (Beardslee, Versage, & Gladstone, 1998; Hipwell, Goosens, Melhuish, & Kumar, 2000; Manassis, Bradley, Goldberg, Hood, & Swinson, 1994).

Risk and Resilience Framework Children of parents with disability have been viewed as at risk for adverse outcomes, and those who exhibit good outcomes are viewed as extraordinarily resilient. Resilience is the capacity to respond adaptively in the presence of adversity and is the result of a complex interaction of risk and protective factors, both internal and external to the individual (Waller, 2001). Consistent with this framework, many researchers have attempted to identify both risk and protective factors associated with young caregiving. Some researchers have criticized the “at risk” versus “extraordinarily resilient” polarized conceptualization of children of parents with disability (Aldridge, 2006; McConnell Gladstone et al., 2006). They claim that the research and discourse that has focused on risk factors has inflated their potency and question whether such factors are true determinants of poor outcomes for children. It is also claimed that such research has pathologized many of the experiences and processes associated with childhood in the context of parental disability. At the at risk end of the risk–resilience continuum, the vulnerabilities of children are emphasized and the child is regarded as a victim rather than an active participant in the lives of their families. In contrast, it is claimed that resilience-focused research is at risk of casting children of parents with disability as super-kids with extraordinary resilience. Some have called for a broadening of the risk/resilience framework that recasts “children as complex young persons who have competencies as well as vulnerabilities linked to their developmental stages” (McConnell Gladstone et al., 2006, p. 2540). They call for researchers to consider the social and interpersonal contexts within which young caregiving occurs, emphasizing the importance of reciprocity and interdependence of caring.

POLICY, SERVICE, AND RESEARCH FUTURE DIRECTIONS Policy In recent years, young carers have been recognized by governments in many countries. However, even in those countries where young carers feature


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highly on the social agenda, policy development varies considerably. With the exception of the United Kingdom, young carers in most countries have no specific legal rights to recognition, assessments, or to support services. In most developing countries, there is a lack of official recognition of the role of young carers at all levels (Becker, 2007). Although making legislative provisions for young carers is important, it is not clear whether a legislative response should be within a carer or child protection framework. Considerable discussion has focused on the needs and rights of young carers, yet in many countries there is very little local empirical data to inform the development of policy and services. Becker (2007) has observed that in the United Kingdom the local young carer research was “critical in raising awareness among UK policy and practitioner networks of the experiences and needs of young carers and their families” (p. 35). He also claimed that “local context is critical in determining social policy and service development responses at the national level.” The development of workable policies must take into account a number of conflicting paradigms and the complex interplay of numerous factors (Aldridge, 2008). For example, policy makers are challenged with developing workable policies that balance the rights of children and the rights of parents with disabilities and balance the protection of young carers and respect for family autonomy and privacy. Policies need to allow the young person to choose to provide care and thereby receive the benefits associated with the role, while at the same time providing necessary supports that minimize the negative impacts.

Service Provision Service delivery responses to the needs of young carers vary considerably across countries (Becker, 2007). Moore (2005) has researched the service needs of young carers by reviewing the relevant literature and drawing on findings from his own research in Australia. His report summarizes what young carers want for their families and cared-for relatives (e.g., family-based rehabilitation programs, respite care, and in-home support), what they want for themselves (e.g., recognition, respect, age-appropriate information, personal and peer support), and the barriers to accessing services for themselves and their families (e.g., lack of service delivery flexibility and lack of self-identification as young carers). Service delivery and intervention development may be dealt with on the four levels specified next.

Young Carer Level Most of the research that has examined the feasibility and/or efficacy of psychosocial interventions for young carers has been carried out with children of parents with mental illness. Fraser, James, Anderson, Lloyd, and Judd (2006) reviewed studies that evaluated interventions for families affected by parental mental illness including those that targeted the child, parent, or family. Most intervention studies in the physical family disability/illness area have focused on siblings of a child with illness or developmental disability (Fraser et al., 2006;

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Lobato & Kao, 2002, 2005; Williams et al., 1997); few have targeted children of a parent with physical disability/illness (Coles, Pakenham, & Leech, 2007). Most interventions have employed a group format, and some have included both children and parents (Lobato & Kao, 2002, 2005), whereas others involved only children (Coles et al., 2007; Pitman & Matthey, 2004; Williams et al., 1997). Most interventions provided education about disability/illness, opportunity to share experiences, and training in coping skills. Overall, findings indicated that many of these interventions were effective in producing increased knowledge of the target illness/disability at the end of treatment. Other benefits included increased social connectedness (Lobato & Kao, 2002, 2005) and self-perceived competence (Lobato & Kao, 2005), and decreases in distress, stress appraisals, adverse caregiving impacts (Coles et al., 2007) and behavior problems (Lobato & Kao, 2002). In addition, many interventions were rated as highly satisfactory by both the children (Coles et al., 2007; Pitman & Matthey, 2004) and parents (Lobato & Kao, 2002, 2005; Williams et al., 1997). Of the studies reviewed by Fraser et al. (2006), over 50 percent were rated as methodologically weak with shortcomings such as the absence of control groups and focus on descriptive rather than empirical results. These and other deficiencies also characterize intervention studies in the parental physical disability/illness domain. Clearly, a gap exists in the current evidence base regarding the effectiveness of psychosocial interventions for children of parents with disability/illness. In addition to the interventions already reviewed, other young carer– focused services might include (a) delivery of age-appropriate information via advice and referral services (e.g., telephone hotlines and online advice); (b) peer support via mentoring and buddy systems; (c) counseling; (d) respite care; (e) financial recognition and remuneration for caregiving; and (f) advocacy bodies. For these young carer services to result in meaningful improvements and choice for young carers, they need to occur in concert with supports for the parent.

Parent Level Flexible alternative care and supports for parents with disability/illness are necessary to lessen the load placed on young carers. These should be across a number of areas depending on need (e.g., medical, psychological, practical, and financial). Clinicians do not routinely collect information regarding the parenting status of patients; hence, there is a need for a shift away from the biomedical model focus on the individual to include the family and community.

Family Level There is growing recognition of the importance of a “whole family approach” to meeting the needs of young carers and the person with care needs (Aldridge & Becker, 2003).

Systemic Level Disability, health, and community care sectors are likely to offer services relevant to the young carer’s caregiving role, and the education and


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employment sectors are relevant to the needs of carers that fall outside of their caregiving role. To facilitate interventions at the systemic level, professionals in these settings (e.g., nurses, GPs, and teachers) need to be educated about young carers, and standards, guidelines, and procedures for identifying and responding to young carers need to be developed. Finally, community awareness and understanding regarding young carers and people with disabilities is required. The complexity inherent in responding to young carers is clear. Young carers have needs across many sectors and areas of responsibility. Hence, any response to young carers should ensure that services are highly coordinated. Young carers need to be represented and consulted about how these programs will be designed and delivered to ensure that they are responsive to their needs.

Research A new challenge for researchers is the balance of inquiry into both the risk and protective or resilience factors in a social and interpersonal context. As such, researchers might be guided by an empowerment framework whereby the strengths, assets, and resources of parents with disability and their children are identified to ensure that these are built on, along with the identification of potential deficits, needs, and barriers. An empowerment approach has the potential to address many aspects of the theories summarized here, as well as provide future service and policy directions. Most researchers have relied on data from one family member. However, given evidence that children and their parents often have differing perspectives on the impacts of parental disability, it is important to collect data from both (Deatrick et al., 1998; Kirshbaum & Olkin, 2002). In view of findings suggesting that the parent with disability and the healthy parent offer unique parenting contributions (Steck et al., 2001), data should be collected from both parents where available. There is also a lack of research data on young children and fathers with disability/illness. Research in the young caregiving field has suffered from the lack of contextually sensitive measures. Prior research has relied on the use of generic measures that often lack sensitivity to the young caregiving context. The recent development of a contextually grounded measure of young caregiving (YCOPI) represents a significant foundational step for future research in this field. However, the YCOPI, although showing potential, requires further refinement by way of validation with independent samples of young carers. Another promising measurement development in this field is the use of photographic participation and elicitation methods. Aldridge (2008) in research on children caring for a parent with mental illness gave children cameras to provide photographic diaries of their lives. Preliminary data suggest that this method has the potential to yield valuable in-depth information on the lives of young carers. Based on the notion that the construction of meaning around stressful situations is an important process in coping with adversity (Taylor, 1983), future research should explore the meaning caregiving holds for youngsters.

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While research investigating the meaning of caregiving in adult carers has recently increased, it is a relatively neglected area of inquiry in the young carer field. Studies show that the meaning carers impose on their caregiving experience plays a role in determining carer adjustment outcomes (Pakenham, 2008, 2008). Further research is also needed to tease out the roles of specific factors that shape young carer well-being, including caregiving activities, role changes, financial burdens, parental disease characteristics, fear of contracting disability/illness, and so on. Given that biological, psychological, and social issues differ across the developmental stages of childhood, research studies tailored to early, middle, and late childhood who have a parent with disability are needed. Many of the research, policy, and practice challenges discussed here are interrelated. For example, adequately designed research and measures that tap the experiences of young carers is necessary to develop frameworks to inform policy and service provision. Consequently, in many cases policies are not embedded in appropriate paradigms, and services fall short of meeting young carers’ needs in all areas of their lives.

NOTES 1. “Family health situation” refers to “someone living in your home or close by who needs special medical care because he/she is sick, has a disability, or can no longer care for him/herself” (Siskowski, 2006, p. 166). 2. The use of the phrase “healthy parents” refers to parents with no overtly diagnosed medical condition or disability.

REFERENCES Aldridge, J. (2006). The experience of children living with and caring for parents with mental illness. Child Abuse Review, 15, 79–88. Aldridge, J. (2008). All work and no play? Understanding the needs of children with caring responsibilities. Children and Society, 22(4), 253–264. Aldridge, J., & Becker, J. (1993a). Punishing children for caring: The hidden cost of young carers. Children and Society, 7, 376–387. Aldridge, J., & Becker, S. (1993b). Children who care: Inside the world of young carers. Loughborough: Loughborough University Young Carers Research Group. Aldridge, J., & Becker, S. (1994). My child, my carer: The parents’ perspective. Loughborough: Loughborough University Young Carers Research Group. Aldridge, J., & Becker, J. (2003). Children caring for parents with mental illness: Perspectives of young carers, parents and professionals. Bristol: Policy Press. Anderson, C. A., & Hammen, C. L. (1993). Psychosocial outcomes of children of unipolar depressed, bipolar, medically ill, and normal women: A longitudinal study. Journal of Consulting and Clinical Psychology, 61(3), 448–454. Armistead, L., Klein, K., & Forehand, R. (1995). Parental physical illness and child functioning. Clinical Psychology Review, 15(5), 409–422. Australian Bureau of Statistics. (2003). Disability, ageing and carers: A summary of findings. Canberra: Author.


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Lobato, D. J., & Kao, B. T. (2005). Brief report: Family based group intervention for young siblings of children with chronic illness and developmental disability. Journal of Pediatric Psychology, 30, 678–682. Manassis, K., Bradley, S., Goldberg, S., Hood, J., & Swinson, R. P. (1994). Attachment in mothers with anxiety disorders and their children. Journal of the American Academy of Child and Adolescent Psychiatry, 33(9), 1106–1122. McCausland, J., & Pakenham, K. I. (2003). Investigation of the benefits of HIV/ AIDS caregiving and relations among caregiver adjustment, benefit finding, and stress and coping variables. AIDS Care, 15, 853–869. McConnell Gladstone, B., Boydell, K. M., & McKeever, P. (2006). Recasting research into children’s experiences of parental mental illness: Beyond risk and resilience. Social Science and Medicine, 62, 2540–2550. McNeil, J. (1993). Americans with disabilities: 1991–1992. Washington, DC: U.S. Bureau of the Census. Moore, T. (2005). More than words: Supporting young carers and their families. Canberra: Youth Coalition of the ACT. Newman, T. (2002). “Young carers” and disabled parents: Time for a change of direction? Disability and Society, 11, 41–54. Office for National Statistics. (2003). Census 2001 data. London: Author. Olkin, R., Abrams, K., Preston, P., & Kirshbaum, M. (2006). Comparison of parents with and without disabilities raising teens: information from the NHIS and two national surveys. Rehabilitation Psychology, 51(1), 43–49. Olsen, R. (1996). Young carers: Challenging the facts and politics of research into children and caring. Disability and Society, 11, 41–54. Olsen, R., & Clarke, H. (2003). Parenting and disability. Bristol: Policy Press. Pakenham, K. I. (2001). Application of a stress and coping model to caregiving in multiple sclerosis. Psychology, Health and Medicine, 6(1), 13–27. Pakenham, K. I. (2005). The positive impact of multiple sclerosis on carers: Associations between carer benefit finding and positive and negative adjustment domains. Disability and Rehabilitation, 27(17), 985–997. Pakenham, K. I. (2008). Making sense of caregiving for persons with multiple sclerosis (MS): The dimensional structure of sense making and relations with positive and negative adjustment. International Journal of Behavioral Medicine. 15, 241–252. Pakenham, K. I. (2008). The nature of sense making in caregiving for persons with multiple sclerosis (MS). Disability and Rehabilitation. 30(17), 1263–1273. Pakenham, K. I., & Bursnall, S. (2006). Relations between social support, appraisal and coping and both positive and negative outcomes for children of a parent with MS and comparisons with children of healthy parents. Clinical Rehabilitation, 20, 709–723. Pakenham, K. I., Bursnall, S., Chiu, J., Cannon, T., & Okochi, M. (2006). The psychosocial impact of caregiving on young people who have a parent with an illness or disability: Comparisons between young caregivers and non-caregivers. Rehabilitation Psychology, 51(2), 113–126. Pakenham, K. I., Chiu, J., Bursnall, S., & Cannon, T. (2007). Relations between social support, appraisal and coping and both positive and negative outcomes in young carers. Journal of Health Psychology, 12(1), 89–102. Pakenham, K. I., & Cox, S. (In press). Development of the benefit finding in multiple sclerosis (MS) caregiving scale: A longitudinal study of relations between benefit finding and adjustment. Psychology and Health. Pakenham, K. I., Stebbins, P., Cannon, T., & Samios, C. (2005). Carers in contemporary Australia: Relations among carer illness/disability groups, biographics, caring context, coping & distress. Brisbane: PsyHealth Media.

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Pedersen, S., & Revenson, T. A. (2005). Parental illness, family functioning, and adolescent well-being: A family ecology framework to guide research. Journal of Family Psychology, 19(3), 404–409. Pitman, E., & Matthey, S. (2004). The SMILES program: A group program for children with mentally ill parents or siblings. American Journal of Orthopsychiatry, 74, 383–388. Prilleltensky, O. (2004). My child is not my carer: Mothers with physical disabilities and the well-being of children. Disability and Society, 19(3), 209–223. Rolland, J. S. (1984). Toward a psychosocial typology of chronic and life-threatening illness. Family Systems Medicine, 2, 245–263. Rolland, J. S. (1999). Parental illness and disability: A family systems framework. Journal of Family Therapy, 21, 242–266. Roy, R. (1990). Consequences of parental illness on children: A review. Social Work and Social Sciences Review, 2, 109–121. Shifren, K., & Kachorek, L. V. (2003). Does early caregiving matter? The effects on young caregivers’ adult mental health. International Journal of Behavioral Development, 27(4), 338–346. Siskowski, C. (2006). Young caregivers: Effect of family health situations on school performance. Journal of School Nursing, 22(3), 163–169. Steck, B., Amsler, F., Kappos, L., & Burgin, D. (2001). Gender-specific differences in the process of coping in families with a parent affected by a chronic somatic disease (e.g. multiple sclerosis). Psychopathology, 34, 236–244. Stetz, K. M., Lewis, F. M., & Primomo, J. (1986). Family coping strategies and chronic illness in the mother. Family Relations, 35(4), 515–522. Taylor, S. E. (1983). Adjustment to threatening events: A theory of cognitive adaptation. American Psychologist, 38(11), 1161–1173. Thomas, N., Stainton, T., Jackson, S., Cheung, W. Y., Doubtfire, S., & Webb, A. (2003). “Your friends don’t understand”: Invisibility and unmet need in the lives of “young carers.” Child and Family Social Work, 8, 35–46. Waller, M. A. (2001). Resilience in ecosystem context: Evolution of the concept. American Journal of Orthopsychiatry, 71(3), 290–297. Walmsley, J. (1993). Contradictions in caring: Reciprocity and interdependence. Disability, Handicap and Society, 8, 129–141. Warren, J. (2007). Young carers: Conventional or exaggerated levels of involvement in domestic and caring tasks? Children and Society, 21, 136–146. Weinfield, N. S., Sroufe, L. A., Egeland, B., & Carlson, E. A. (1999). The nature of individual differences in infant-caregiver attachment. In J. Cassidy & P. R. Shaver (Eds.), Handbook of attachment: Theory, research, and clinical applications (pp. 68–87). New York: Guilford. Williams, P. D., Hanson, S., Karlin, R., Ridder, L., Liebergen, A., Olson, J., et al. (1997). Outcomes of a nursing intervention for siblings of chronically ill children: A pilot study. Journal of the Society of Paediatric Nurses, 2, 127–138. Worsham, N. L., Compas, B. E., & Sydney, E. Y. (1997). Children’s coping with parental illness. In S. A. Wolchik & I. N. Sandler (Eds.), Handbook of children’s coping: Linking theory and intervention (pp. 195–213). New York: Plenum.

CHAPTER 4

The Digital Town Square: Information and Communication Technology as an Opportunity and a Barrier to Social Relations for Disabled Youth Sylvia Söderström

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he topic of this chapter is social relations among disabled youths in Norway and the opportunities or barriers that are associated with information and communication technology (ICT). This chapter focuses on the significance of personal computers (computers) and mobile phones (mobiles) to inclusion and exclusion processes for disabled youth in relation to their peer group, social capital, and identity negotiations. Specifically, the chapter discusses when, how, for whom, and with what consequences ICT can provide new opportunities or create new barriers for disabled youths to participate in social relations. It illustrates how engagement in digital communication and interaction is vital to social participation by describing the experiences of Norwegian disabled youths between the ages 15 and 20 as they interact with ICT as a form of communication. The chapter concludes that ICT enhances opportunities for social relationships through: • Communication and interaction with peers on the “digital town square,” • Participation in shared digital activities, on and around the computer screen, • Displaying and sharing digital competencies, in real and in virtual contexts, • Taking part in the permeability of the real and the virtual in everyday life. However, the chapter also illustrates how ICT can create inhibiting barriers for young disabled people. These barriers are found to emerge in settings

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where the interactive use and account of ICT is experienced by the young disabled people as: • Discouraging of social relationships, • Difficult, confusing, and exerting, • A risky social setting where ICT becomes a tool for harassment. Breaking down disabling barriers and the purposeful provision of equal opportunities for participation and development for disabled people is a declared goal in official Norwegian documents (Norwegian Official Report, 2001, p. 22; White Paper no. 40, 2002–2003). The government claims that removal of disabling barriers in society, including those created by technology, and increased accessibility is vital if this goal is to be achieved. In achieving the goal of removing disabling barriers, the Norwegian government points to a need for more social research on the interactions between environments, disabling barriers, and the consequences of social change (Full Participation for All? Development Trends, 2001–2006; Government’s Action Plan for Increased Accessibility, 2004; Ministry of Modernisation, 2009; State of Affairs on Accessibility in Norway, 2006). This chapter explores social changes in communication and interpersonal interaction and also illustrates how the increasingly widespread dissemination and utilization of ICT in the population can mediate new opportunities for communication, interaction, and participation for many disabled youths. On the other hand, ICT can also create new barriers for disabled youths. In the abundant literature on theories guiding the field of ICT and young people in general, Livingstone (2003) found two key questions to be essential. (1) Are young people a special group? (2) Is ICT a distinctive technology? In writing this chapter, I acknowledge three broad assumptions guiding the field. First, I recognize the fact that children and youth play a key role in establishing emerging ICT-related practices. Second, I recognize a need to go beyond the issue of access and contextualize ICT uses and impacts within everyday life. Third, I recognize that new technology not only adds to the existing mix of available technology but also transforms the way in which the latter are perceived and used (Livingstone, 2003). ICT manifests in diverse practices that vary as much as the contexts in which it is used. Thus, ICT, social context, and action are found to be an inseparable phenomena, each influencing each other (Lievrouw & Livingstone, 2006; Valentine & Holloway, 2002).

CURRENT RESEARCH ON YOUTH, ICT, AND SOCIAL RELATIONS There is a comprehensive body of research on young people in general and the use of ICT. The dissemination of ICT in Norway is among the highest in Europe. In 2006, virtually all young Norwegians aged 16 or older were active computer and Internet users, and all of them owned their own mobile

THE DIGITAL TOWN SQUARE

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telephone (Kaare, Brantzæg, Heim, & Endestad, 2007; Lorentzen, 2007). Thus, ICT has become a common device in Norwegian society, and Norwegian children and youth are as accustomed to this technology as earlier generations were to television or radio. But how do the young people use ICT, and what significance does it hold in their social relationships? The most utilized function of computers among Norwegian youth is the Internet. On the Internet, they communicate mainly with friends and acquaintances who are already known in real life, and they surf the Web for fun and leisure (Arnseth, Hatlevik, Kløvstad, Kristiansen, & Ottestad, 2007; Kaare et al., 2007; Torgersen, 2004). Similar findings have emerged from studies conducted in other parts of the world (Baym, 2006; Baym, Zhang, & Lin, 2004; Livingstone, 2003; McMillan & Morrison, 2006; Räsânen & Kouvo, 2007; Rice & Haythornthwaite, 2006; Thulin & Vilhelmson, 2005). Young Norwegians’ preferred method of Internet communication has, however, changed during the latest years from e-mail to instant messaging (MSN) (Arnseth et al., 2007; Kaare et al., 2007; Torgersen, 2004). When it comes to the mobile phone, the most popular and utilized function among Norwegian youth is text messages (SMS) (Kaare et al. 2007). The greatest significance of SMS and MSN for young people is the opportunity these communication channels hold in being available and staying in touch with friends and peers (Kaare et al. 2007; Ling, 2004; Oksman & Turtianien, 2004; Wei & Lo, 2006). A comprehensive body of research has demonstrated that young people’s use of mobile phones and online communications is highly integrated in their real-life relationships (Baym, 2006; Baym et al., 2004; Brandtzæg & Stav, 2004; Buckingham, 2006; Kaare et al., 2007; Livingstone, 2003; Madell & Muncer, 2005; McMillan & Morrison, 2006; Peter & Valkenburg, 2006; Thulin & Vilhelmson, 2005; Valentine & Holloway, 2002; Wei & Lo, 2006; Wellman, Hase, Witte, & Hampton, 2001). Buckingham (2006) pointed out that media-based commodities have become a crucial factor in the social construction of young people’s peer group cultures. Other researchers have pointed to how the real and the virtual are no longer separate worlds, but are permeable and influential on each other (Livingstone, 2003; Seymour & Lupton, 2004). Despite this impressive body of evidence, it is not clear how the findings relate to disabled youths. It is difficult to identify whether any disabled youths were included in these studies. Further, the studies have not explored questions about personal functioning level or accessibility and usability of the technologies. Although some studies have been conducted on ICT use among disabled people, these have focused on adults or have sought an adult perspective (Anderberg & Jönsson, 2005; Bowker & Tuffin, 2002; D’Aubin, 2007; Dobransky & Hargatti, 2006; Houlihan et al., 2003; Pell, Gillies, & Carss, 1999; Seymour, 2005; Seymour & Lupton, 2004; Stienstra, 2006; Tobias, 2003). Generally adults and young people use ICT in different ways, just as disabled and nondisabled people may have different preferences in use of ICT. These potential differences make it especially important to additionally investigate the perspectives and uses of ICT among disabled youths.

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CURRENT RESEARCH ON DISABLED PEOPLE, ICT, AND SOCIAL RELATIONS The potential of ICT to facilitate social connection is one of the benefits identified by adult disabled people (Anderberg & Jönsson, 2005; Bowker & Tuffin, 2002; Houlihan et al. 2003; Seymour, 2005; Seymour & Lupton, 2004). Some disabled people have described how “bodiless” communication on the Internet has given them an opportunity to meet online acquaintances as equals and given them the ability to choose whether to disclose their impairment (Anderberg & Jônsson, 2005). However, other researchers have found that impairment and disabling experiences are not concealed in online communication, and in fact, it is the impairment and disabling experiences that remains the principle bond in digitalized relationships (Seymour & Lupton, 2004). Many researchers point to how ICT can be a great communication tool for those who find it difficult to meet friends and participate in leisure activities (Anderberg & Jönsson, 2005; Bowker & Tuffin, 2002; Houlihan et al. 2003; Rice & Haythornthwaite, 2006; Seymour, 2005; Seymour & Lupton, 2004). Exclusion from the opportunities provided by ICT is perceived as one of the most damaging exclusions in modern society, especially for young people (Livingstone & Helsper, 2006). However, the possibilities ICT may hold in communication and participation need to be studied in its social envelope, which is the sets of expectations, contexts, and social practices that surround ICT.

ICT AND DISABILITY IN A NORWEGIAN CONTEXT Since World War II, Norway has become a solid welfare state, securing the citizens’ material rights by means of official social benefits and health services. A central ideal in this development has been the notion of universalism, accompanied by actions for differentiation (Hjelmtveit, 2005). Whereas universalism is the equal rights to public services and arenas for every citizen, differentiation provides individual adoptions for those who need special adjustment to exploit their rights. Since the 1960s, disability has been a separate field in the Norwegian archives, which means that disability has been addressed in separate governmental documents. The emphasis in these documents is on disabled people’s right to equal inclusion and full participation in all parts of society and on the need for universal design and access for all (Government’s Action Plan for Increased Accessibility, 2004; Ministry of Modernisation, 2009; Norwegian Official Report, 2001; State of Affairs on Accessibility in Norway, 2006; White Paper no. 40, 2002–2003). In the same period of time, the relational model of disability was introduced in Norway. Tøssebro (2004, p. 3) calls this development an “environmental turn” because it calls attention to the disabling impacts of cultural, social, and environmental barriers (Taustadòttir & Kristiansen, 2004). In Norway, disability is thus defined as a mismatch between a person’s capabilities and the functional demands of the environment, or in terms of a gap between an individual and their functioning and societal and environmental demands (Norwegian


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Official Report, 2001; White Paper no. 40, 2002–2003). The important point in this perspective is that the social construction of disability takes place both in interpersonal relationships, in encounters between individuals and the environment, and between individuals and society (Gustavsson, Tøssebro, & Traustadòttir, 2005). Considering disability as something relational that displays itself differently in different encounters and relationships, the empirical context in which this takes place becomes of great analytical importance. Thus, disabled is something one becomes in different relationships and encounters, and this chapter uses the term disabled youths, which is dominant in the Nordic perspective on disability, to underscore this social and environmental dimension of disability. For most Norwegian disabled children and youths, the policy of universalism and differentiation implies that they attend their local school and are expected to participate in ordinary settings with their friends and peers, with some individual adaptations if needed. The provision and assignment of assistive technology is an essential part of implementing this policy as evidenced by the national public system of assistive technology center, allocating assistive technology based on discretionary evaluation of the needs of the individual (Halvorsen & Hvinden, 2007). Many disabled children and youths in Norway are allocated computers as an educational assistive technology through these centers. Those with visual impairments are additionally allocated ICT assistive technologies, such as Braille displays and screen readers.

THE ICT EXPERIENCES OF DISABLED YOUTHS Given the perception that ICT may provide a mechanism for addressing disadvantage in Norway, it is important to investigate this assumption. The rest of this chapter describes the opportunities and barriers experienced by a group of young people with disabilities as described to me in conversations. Major themes were identified through the conversational interviews, each simultaneously representing an opportunity and a barrier.

A Central Meeting Place: The Digital Town Square The significance of ICT for young people’s friendships and social relations might be perceived as an empirical image of a “digital town square.” This image displays the social envelope and cultural context in which youths, both disabled and nondisabled, find themselves. This digital town square holds the same significance as the physical local market—a central meeting place for communication, interaction, gossip, and exchanging news. An important difference is, however, that the digital town square is independent of physical location, presence, or mobility. Iselin is a 17-year-old vision-impaired young woman who attends the local high school and has chosen music as her main subject. Iselin described herself as a friendly and extroverted person who enjoys hanging out with her friends. She was allocated a computer and various ICT assistive technologies in primary

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school. We talked about friendship, leisure activities, communication, and ICT. When I asked Iselin if she ever uses the MSN, she said: I love the MSN. It is a very nice way to keep in touch with my friends. On the MSN I talk to my friends at school, my friends where we used to live and my friends from summer camps and stuff. We talk about every thing at MSN, like how stupid the teachers can be or what you are going to wear to the party this weekend. But it is also a little bit different according to whom I am talking to. Like if it is only an acquaintance then it is just like “Hi how are you doing?” but if it is one of my close friends then we talk about more personal stuff. The MSN is so much better than e-mail, because even though you can write a lot on e-mail you don’t get an answer right away like you do on the MSN. And you can always log on to the MSN and meet your friends there.

Like most of the young people I interviewed, Iselin loved to chat with her friends on MSN, and like most other young people, it was with existing friends and already known acquaintances that she communicated (Kaare et al., 2007; McMillan & Morrison, 2006; Thulin & Wilhelmson, 2004). They all described the convenience and efficiency of MSN as the main reason for its popularity. Its efficiency lay in the capability of rapid and simultaneous conversation, and its convenience was based on the fact that they can always meet some friends on MSN. If young people, for some reason, were not able to meet their friends on MSN, then the mobile phone was used. Iselin and most of the other young people used the mobile telephone as a replacement technology when MSN was not available. Heine is a 20-year-old young man with many interests. He uses a wheelchair and has comprehensive movement difficulties. We talked about technology and communication, friends, and participation in society. When I asked Heine how he used his mobile phone, he answered, “If I for some reason can’t use the MSN, like when I am on camps and stuff, it is nice to have the mobile. Because then I can use the mobile to keep in touch with friends and family. Or if I can’t get hold of a friend on MSN, I just send am SMS to give a message or something. Usually you can always get hold of people on their mobiles.” Even when Heine did not have access to a computer or his friends were not logged on MSN, he was still able to establish contact with his friends using the mobile phone. He was, therefore, using his mobile phone like most other young people, as a complement to MSN and in establishing contact by means of SMS (Kaare et al., 2007; Madell & Muncer, 2005; Oksman & Turtianien, 2004). The main content of his SMS messages are short notes such as, “What are you doing?,” greetings or requests such as, “Can you log on and meet me on MSN?” The mobile phone, and especially SMS, was found to be an important contact establishing channel and an everyday micro-organizational tool. However, the Internet-connected computer, especially MSN, took priority as the most important communication channel (Kaare et al., 2007; Ling, 2004; Oksman & Turtianien, 2004; Wei & Lo, 2006). For teenagers and young adults, the Internet-connected computer and MSN has become a central meeting place for communication, interaction, and just hanging out. This meeting place is independent of geography


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and mobility because one does not have to travel, dress up, and plan ahead to meet friends there. Some disabled youths found the properties of the digital medium a bit frustrating and exhausting. Jon is a 16-year-old partially sighted young man. He was allocated a computer in primary school as well as several assistive technology devices, but was not fond of using the latter as they were too bothersome to use. Jon was not fond of reading and writing, as he found it quite exhausting. He was, however, very fond of playing games and talking to friends. In response to my question about how he preferred to communicate with his friends he said, “I have Skype. I think it is easier to talk to people on Skype than on the MSN. It is easier to avoid misunderstandings. You can listen to the voice and correct things right away.” Skype is a software program that is freely downloaded and installed on a personal computer. Using Skype is like making a normal phone call. Jon was thus talking to and listening to his friends instead of writing to them and reading as he would on MSN. Using Skype was a common communication strategy for several young people, both disabled and nondisabled. Like MSN, the fact that Skype is free to use was one of its advantages and contributed to the preferences of young people to make use of this medium. Digital communication, whether by means of MSN, SMS, or Skype, provided Iselin, Heine, and Jon, as it did most other youths, with the opportunity to be available and stay in touch with friends and acquaintances at all times. The convenience and efficiency of these technologies was emphasized as the greatest benefit for young people with disabilities, as found in relation to most young people (Arnseth et al., 2007; Houlihan et al., 2003; Kaare et al., 2007; McMillan & Morrison, 2006; Torgersen, 2004). McMillan and Morrison (2006) found that young people were expected to be connected, and if they were not connected, they were not able to participate in their community. Young people’s use of digital interaction, especially on MSN, had created a digital town square where they met, chatted, made appointments, and exchanged the latest news. This digital town square has become the central meeting place for young people, both with and without disabilities. Through the computer, supplemented by the mobile phone, the digital town square is accessible regardless of time, place, and mobility. Kaare et al. (2007) pointed to how this availability brings about the “always-on” relationships. These relationships are characterized by the need and demand for always staying connected and by the dependency on technology to be able to participate (McMillan & Morrison, 2006). Such always-on relationships, and the consequent dependence on technology, presents both opportunities and barriers for disabled youths as they attempt to participate in the digital town square and build their social relationships.

The Notion of Disability Opportunities to Make Disability Unessential When disabled youths experienced ICT as accessible and usable, the most significant impact in relation to social relationships was the opportunity to make disability unessential.

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Signe is a 17-year-old young woman who uses a wheelchair. She lives in a rural area and attends the local high school. Signe presented herself as an outgoing girl with many friends and hobbies, but like many other disabled youths, she described a lack of organized leisure activities. When I asked her how she usually socialized with friends, she replied, “Whenever I am at home I am logged on to MSN. I talk to my friends every day on MSN. We share news, discuss hobbies and help each other with school work. Nowadays we are designing a Web site; it’s supposed to be a fan club for a local pop artist we like. It is I who knows the most about computers.” Signe sounded very proud when she told me that she was the one with the most knowledge about computers. She described how her friends visited her often and together they engaged in browsing the Web, designing Web sites, or watching movies on the computer. Thus, ICT emerged as a tool that brought Signe and her friends together in shared activities around the screen. She was, in this way, demonstrating how digital competence is a valued quality among most young people and that it plays an important role in peer group relationships (Buckingham, 2006; Kaare et al., 2007; McMillan & Morrison, 2006; Valentine & Holloway, 2002). Sharing her digital competence with her friends allowed Signe to achieve a valued status and create a place where she was appreciated and included. The digital town square thus provided Signe, like many other disabled youths, the opportunity to participate in society in a way that made her lack of mobility unessential. In a digital environment, many disabled youths found themselves freed from prejudice, stigma, and isolation, and empowered by a tool for enhancing their functional and personal abilities (Anderberg & Jönsson, 2005; Dobransky & Hargittai, 2006; Whitley, 1997). Like Signe, other young people experienced ICT as an opportunity to share their digital competencies and reinforce friendships. Maren is a 17-year-old young woman who is visually impaired. She says, “The advantage of Skype is that I can express myself more orally, which is easier than writing. Most of my friends use Skype too.” Like almost 25 percent of the young people I spoke with, Maren used Skype in addition to MSN to communicate with her friends. Using Skype provided her with the ability to communicate more freely than she did in writing, and she was thus able to display herself in more favorable ways. Even though Skype is not yet a common property, more young people are adopting this technology. In using it, Maren was part of an initiator group who were shaping a youthful trend based on the rapid incorporation of new technologies. Young people’s attitudes toward new technologies are generally characterized by curiosity and enthusiasm. They easily incorporate new technologies and the utilization of these technologies is generally valued in their peer groups (Buckingham, 2006; Kaare et al., 2007; McMillan & Morrison, 2006; Valentine & Holloway, 2002). Similarly, these technologies provide many disabled youths the opportunity to be trendy, communicate with peers on their own terms, and render their disabilities unessential. Eivind is a 17-year-old young man who is partially sighted. He has finished school and is waiting for an apprentice training place in a bakery. For the time being, he spends his days at home. Eivind told me that he does not use the computer much, except for using Skype and playing computer games. I asked him to tell me about what kind of games he played and he responded,


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I play World of Warcraft. Sometimes I can play it for six hours. I play sometimes together with friends and sometimes together with people from England and the Netherlands. We play and talk at the same time. It is fun to get to know other people. You get to know them quite well when you play and talk with them almost every day. But I haven’t met any of them.

Thus, on the digital town square, Eivind meets people who share his interest in computer games. He participates in the game playing and gets to know people from other countries. Eivind is thus building a digital network of his own choice, a network where he is able to control the degree of personal exposure, where his competencies are displayed, and where his visual impairment is made unessential. On the digital town square, disabled youths have the opportunity to interact without the interference of the stigma of disability getting in the forefront of the interaction. A stigma is a discrediting attribute, like lazy, dull, or unqualified, that is inflicted on people with disabilities. A stigma is derived from stereotypical notions about external and social attributes, and it brings about inflexible and stereotypical anticipations and behaviors toward the person with a disability (Barron, 2005; Goffman, 1963; Grue, 2001). The opportunity ICT might provide to escape a stigma and make disability unessential lies in the properties of digitally mediated interaction. Digitally mediated interaction is not subject to the biases that might arise in face-to-face interactions due to external attributes and physical cues, such as different appearances, gestures, or facial expressions (Brandtzæg & Stav, 2004; Kaare et al., 2007; Whitley, 1997). Even when the digital interaction takes place with well-known friends, potential physical cues are not as prominent, and thus do not interfere with the interaction in the same way as they might in faceto-face interactions. This digital context provides Eivind, Signe, Maren, and other disabled youths an opportunity to escape the interference of stigma in their social relationships, interact on more equal terms, and seize the chance to display digital competencies and personal capabilities and thus make their disability nonexistent.

Barriers to Making Disability Unessential When the digital town square was inaccessible or unusable, it was found to be a barrier in making disability unessential. Importantly, the digital town square itself neither provided opportunities nor created barriers. The same person found both opportunities and barriers in different parts of the digital town square. Kristin is a 16-year-old young woman with movement difficulties; she uses a wheelchair to get around. She attends the local high school and described how she loved spending time with her friends. She talked a lot on MSN, listened to music, and did her homework, all at the same time. I asked her what else she did on the computer and she said, “Nothing much. I have never figured out how the other ones download movies or design home pages. It’s a little bit annoying actually, because it sounds fun.” When Kristin listened to her friends talk about movies they downloaded from the Internet or how they designed their home pages, her lack of digital competencies in this area

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results in her exclusion from participating not only in her friends’ joint online experiences but also in their offline face-to-face interactions about their online activities. Thus, inaccessible ICT weakened Kristin’s social ties and relations, illustrating the significance of ICT in sustaining and reinforcing young people’s social relationships and the social consequences of not being able to engage in valued activities on the digital town square. In facing this ICT-mediated barrier, which in Kristin’s case is a lack in digital competencies, her difference from her peers was highlighted. It is not uncommon for every behavior, limitation, or appearance to be linked to the person’s impairment (Barron, 2005; Goffman, 1963; Grue, 2001). Given the extent to which people’s attitudes toward and expectations of a person who has an impairment generally guide their interpretation and understanding of that person, it is plausible to assume that Kristin’s peers ascribed her lack of digital competencies to her impairment. She thus encountered ICT-mediated barriers that not only hampered her effort to make disability unessential in her social relations with friends and peers but also impacted on her ability to engage in non-ICT relationships. Some young disabled people described how they found parts of the Internet inaccessible, confusing, and complicated. Despite being allocated assistive technology to make the Internet accessible, most of the young people found that this technology only made some parts of the Internet accessible, and very often not the popular sites or interactive parts, like MSN, chat rooms, or interactive computer games. By not engaging in these digital interactivities, young disabled people were excluded from the digital town square and thus from participating in a central meeting place for young people. Consequently, they did not meet the demand associated with always-on relationships, namely, to be connected and available at all times. Further, these ICT-mediated barriers to social relationships with friends and peers are likely to be ascribed to disability, and not to the technology or its properties and practices.

The Experience of Solitude An Opportunity to Escape the Solitude When young disabled people found ICT accessible and usable, this allowed them to attend the digital town square, it also provided them an important opportunity to break a potential solitude. Young people with disabilities may not have the same opportunities to socialize and participate in leisure activities as other young people. Although most disabled Norwegian youths attend the local school and are able to participate in social settings, it has been found that they participate less in such settings, and that they have fewer friends than nondisabled Norwegian youth (Grue, 1998, 2001). Similar findings have emerged from studies in other countries (Aitchison, 2003). Many of the young disabled people I interviewed told me that they did not have many friends, nor did they attend organized leisure activities. ICT offered an opportunity for these young people to overcome this solitude. For example Maya, an 18-year-old partially sighted young woman, stated, “Thank God for MSN! You see, I don’t have like many friends around here. I have one


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friend, a neighbor who I grew up with.” All the young people spoke about their utilization of computers and mobile phones as a way of relieving solitude. Harald, an 18-year-old young man with some movement difficulties, stated, “The best part with the computer is to have something to do. There is not always a lot to do you know . . . like social activities and stuff.” The lives of young people are typically characterized by multiple and complex social networks, defined by more than one way of relating to their friends. As they meet in different social settings, their roles and relationships change accordingly, but the boundaries between these arenas are permeable, with events from one arena being discussed in other arenas (Grue, 2001). For young people, friends are an important source of feedback and represent a unique closeness that involves sharing of personal experiences and opinions. Friendships are a vital part of the development and foundation of self-esteem and personal identity (Frønes, 2003). The Internet-connected computer has been found to play an important part in these processes by facilitating relationships (Valentine & Holloway, 2002). For disabled youths, friends and peers are not guaranteed. Indeed, many young disabled people face the challenge of becoming marginalized. To be marginalized is to be put aside and made insignificant in social relationships (Grue, 2001), as might happen by being shut out of common meeting arenas, such as the digital town square, and from engaging in mutual communication and participating in shared activities. One consequence of marginalization is solitude, which can already be problematic in a country such as Norway, where the population is scattered and many people live in rural areas without a wide range of potential friends. The diversity in small local communities is often limited, increasing the likelihood of being marginalized. Harald and Maya confronted this challenge, like many other disabled youths, by engaging in digital interactions and activities. On the digital town square, they do not encounter the same obstacles as in the local physical environments because they are provided an opportunity to socialize, participate, and interact with other youths. At the digital town square, disabled youths can meet people and interact independently of characteristic, geography, time, or mobility. As found by other researchers, the Internet provided these young people who have a hard time meeting people with a great communication tool (Dobransky & Hargittai, 2006; Rice & Haythornthwaite, 2006; Seymour & Lupton, 2004; Valentine & Holloway, 2002). Tore, a 16-year-old young man with comprehensive movement difficulties, makes the significance of the computer quite clear. In response to my question about what he would miss the most if he did not have a computer, he promptly answers, “Without the computer I have no friends.” For all these young people, the computer brings the digital town square into their homes, and they are provided an opportunity to communicate and interact with friends and peers. Thus, ICT contributes to the process of breaking their solitude.

A Barrier to Escaping the Solitude Some of the disabled youths were unable to address their solitude through ICT. Øyvind is a 19-year-old young man with movement difficulties. He

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stated that he enjoyed swimming, horseback riding, and listening to audio books. Both swimming and horseback riding are activities he attended accompanied by professional helpers as part of a training program. Øyvind told me about how he spent his days. He has dropped out of school and is receiving disability income support benefits. At school, he was bullied a lot, and even though he found it a little boring spending so much time at home, he was reluctant to go back to school. He used his computer solely for e-mail and reading news on the Internet, whereas he used his mobile phone to SMS his parents and his cousin. When I asked Øyvind if he had tried the MSN he said, “Well, I have tried to use the MSN but I don’t use it a lot . . . I don’t have like so many . . . but of course there is my cousin. Recently it has been so nice weather that I have been too occupied with other things.” The stories Øyvind told me and the manner in which he responded to my questions confirmed that he did not have many friends but that it was hard for him to admit this. Thus, because he did not have any friends with whom to communicate on the MSN, this technology did not provide him any opportunity to escape his solitude. Øyvind therefore illustrated the importance of an offline social group to facilitate the social potential provided by ICT, a conclusion that is supported by a comprehensive body of research (Arnseth et al., 2007; Baym, 2006; Baym et al., 2004; Kaare et al., 2007; Livingstone, 2003; McMillan & Morrison, 2006; Räsânen & Kouvo, 2007; Rice & Haythornthwaite, 2006; Thulin & Vilhelmson, 2005; Torgersen, 2004). For those young people who have literacy, concentration, or cognitive difficulties, the use of ICT is even further complicated. Several young people talked about the confusion and exertion they experienced in using ICT. Christine is a 19-year-old young woman who had just moved to the city to attend college and was living alone for the first time. She is using a wheelchair, and as a result of the difficulties she experienced in getting around outside her apartment, special transport had been organized for her to get back and forth to college. So far, she had only one friend in the city, a young man with an impairment living in the same building. She spent her spare time in the apartment, something she found a little annoying. Talking about friends and communication she said, “I think it is easier to discuss things face-to-face than on the MSN. On the MSN I easily get confused. It is a little bit difficult to keep track of every thing, so I don’t have the habit of chatting on the MSN. But I use the e-mail quite regularly.” During the conversation, it was revealed that Christine’s use of email was her tool for organizing her daily life. She used e-mail “for purposes regarding my situation, which I will never get rid of.” These purposes included planning meetings with her support group, organizing transportation, or making appointments with professional helpers. Although most Norwegian young people use the MSN as their highway to communication and interaction with friends and peers, Christine found the speed and heavy traffic on this highway confusing and overwhelming. Thus, she restricted her ICT activity to e-mail, a road traveled by very few Norwegian young people. Consequently, Christine does not meet any friends or peers on this road. Most young people described e-mail as being too slow and inefficient for communication purposes because it is not capable of immediate


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exchanges. They do, however, use e-mail for public contacts, as Christine did, and for schoolwork. Some evidence has confirmed that e-mail is utilized more by Norwegian youth at school and for school-related work than at home, where MSN is the preferred communication channel (Arnseth et al., 2007). Thus, for Christine the speed and complexity of the MSN, the central meeting place for young people, created a barrier for her in her efforts to escape potential solitude. The properties of ICT are experienced differently by different users and in different contexts. For some young people, ICT is associated with sociability and communication and for others with academic use (Valentine & Holloway, 2002). For some of the young people in the current study ICT was associated with difficulties, confusion, and exertion. In addition, because ICT constitutes such a central meeting place for young people to develop and maintain their social relationships, young disabled people who encounter ICT-mediated barriers are particularly disadvantaged in their social relations with friends and peers.

Permeability of the Real and the Virtual The conceptions and experiences about what is real, social, and interpersonal are changing contemporaneously with the expansion of the arenas within which communications, interactions, and relationships occur. Thus, the real world and the virtual world are no longer separate entities but are permeable, mutually constituted, and embedded within everyday life (Anderberg & Jönsson, 2005; Baym, 2006; Baym et al., 2004; Brandtzæg & Stav, 2004; Buckingham, 2006; Houlihan et al., 2003; Kaare et al., 2007; Oksman & Turtianien, 2004; Peter & Valkenburg, 2006; Seymour & Lupton, 2004; Thulin & Vilhelmson, 2005; Wellman et al., 2001). Young people typically experience this permeability of the real and the virtual, but little is known about how it affects the social relationships of young disabled people. However, three girls, Henny, Mette, and Karin, illuminate the common experience among young people of the significance of this permeability. Henny, a 17-year-old nondisabled young woman, says, “Because all the others have a computer I would have been completely lost without my computer. I would have felt like totally outside everything.” Mette, a 16-year-old nondisabled girl, puts it this way: “I don’t know how I would have managed without the computer. Being on the computer is to be social. I would have missed it a lot.” Karin, another 16-year-old nondisabled girl, gives a clear expression: “If you can sit and chat with someone on the computer then it means that you also have a relationship to them in your leisure time.”

An Opportunity to Enhance Social Relationships For most disabled youths, the permeability of the real and the virtual enhanced their opportunities in social relations. The most common opportunity taken up by young people in general, and by the young people I interviewed, was to continue to communicate with schoolmates and other already known friends after school hours (Baym et al., 2004; Brandtzæg & Stav, 2004; Kaare

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et al., 2007; McMillan & Morrison, 2006; Thulin & Vilhelmson, 2005; Valentine & Holloway, 2002). Ingrid is a 15-year-old blind young woman. She shared, “On the MSN I talk to my friends from school and other blind youths I have met on camps and stuff.” Almost all of the disabled youths described how they attended summer camps and gatherings, and then used ICT to remain in touch with the friends they made at such camps and gatherings. Despite distances and the lack of face-to-face interactions with these friends, they communicated and interacted on the digital town square by means of ICT. Here, they talked about joint experiences and common acquaintances from the camps or gatherings, they discussed their everyday local life at school and in the neighborhood, and they planned meeting at the next camp or gathering. When they again met in person, they knew each other even better than the last time, which is congruent with many other studies on how young people engage in ICT (Baym et al., 2004; Brandtzæg & Stav, 2004; Kaare et al., 2007; McMillan & Morrison, 2006; Thulin & Vilhelmson, 2005; Valentine & Holloway, 2002). Many young disabled people seek the company of other young disabled people. Close friends share interests and experiences and understanding. Given the complexity of experiences of young disabled people, it is likely that they may require a great deal of empathy and understanding from close friends. As a result, young people may be forced to make careful selection of friends, partially accounting for the fact that young people with disabilities have fewer friends than other young people (Aitchison, 2003; Grue, 2001). For many disabled youths, the permeability of the real and the virtual provided them an opportunity to maintain friendship with their friends regardless of geographical distance. It also provided them an enhanced opportunity to choose their affiliation, their close and intimate relationships, and their distant acquaintances. The extended dissemination and use of ICT in the population has provided many young people a freedom of choice in this area, which was not an option earlier. In this way, the young disabled people integrate the real and the virtual to enhance their social relationships. Many of the young people with movement difficulties discussed problems getting around in the local community. Jacob is a 16-year-old young man with comprehensive movement difficulties. He uses an electric wheelchair. He lives in a small town and attends the local school. Jacob stated that he enjoyed school and he told me about his three friends, “I have three friends at school. We are all into computers and computer games. Every other weekend they visit me at home and then we play games, surf the Web, and discuss computer stuff. And if I need help with anything [on the computer], I can just ask them.” Like Signe and her friends, Jacob and his friends gather around the computer screen in shared activities, thus blending the real world and the virtual world as a way of facilitating social relationships. The implementation of ICT by young people has turned it into a tool that brings friends together in face-to-face activities around the computer screen. The virtual has become an important element in the real interactions and relationships of many young people. Gatherings around the computer screen can take place almost anywhere and do not demand much mobility or physical efforts. Such settings


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provide many disabled youths, who experience difficulty attending leisure activities or social gatherings, with enhanced opportunities in social relationships and activities with friends and peers. In these settings, the real and the virtual are combined, and communications about digital commodities and virtual experiences have become an important aspect of social engagement.

A Barrier in Establishing Social Relationships The permeability of the real and the virtual also created barriers for disabled youths, even when the digital town square was accessible. Christopher is an 18-year-old young man with some movement and visual difficulties. He told me that he used his computer to read news and watch movies, whereas he used his mobile phone to SMS his parents, siblings, and other relatives. Christopher attends the local school. When I asked him how long he spent on the computer in an ordinary day, he answered, “Not so long, maybe half an hour. The reason why I don’t use it more is because I don’t chat on the MSN. I don’t think it is very nice. Some people are quite rude, and they say things they would never have said face to face. I like it better to get to know people in the ordinary way.” Christopher had experienced harassment on the Internet, confirming that digital-mediated communication and face-to-face communication may differ in both content and in style. The opportunity to communicate on the computer without face-to-face contact has been found to promote a lower social threshold for unrestricted, creative, and unreserved communication than would be found in traditional offline communication. This lower threshold leads to a richer emotional communication, sometimes in the shape of emotional support or intimate messages, but sometimes in the shape of hostility and harassments (Brandtzæg & Stav, 2004; Kaare et al., 2007; Oksman & Turtianien, 2004; Peter & Valkenberg, 2006; Whitley, 1997). Christopher did not have any close friends to facilitate his safe introduction to the Internet, and when he accessed MSN, he had come into contact with casual acquaintances, making him vulnerable to ICT-related abuse. Livingstone (2003) and Buckingham (2006) pointed to the need for more knowledge about how technology enters into the peer group. As described by Valentine and Holloway (2002), this chapter has shown how ICT emerges and is utilized differently by young disabled people. Although ICT is generally experienced positively by young disabled people, for some it has been a source of negative experiences. Only a few young people told stories about being harassed through ICT, but many admitted to knowing about someone who has experienced negative interactions. When negative interactions occurred, it was mostly on home pages on the Internet or by SMS. Lars is a 17-year-old young man who has some movement difficulties. He talked about his experience with a home page on the Web: One time, my friends and I designed a home page. But it was just nonsense, just for fun to tease people. But I know many, especially girls, who have made their own home page and then someone has written a lot of rubbish about them in the guest book. At school some teachers try to reprimand those who write such things. But it is not always easy to know who this is, and I personally don’t bother. I would never be offended by such things.

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Negative experiences such as this resulted in young people’s withdrawal from engaging in interactions on the Web. This experience made young people reluctant to seek contact with strangers on the Web. Although the permeability of the real and the virtual enhanced social relationships for most of the young people, such as Mari, Jacob, and Lars, it diminished social relationships for a few young people. Most of the young people expressed their skepticism regarding contact with unknown people via the Web. They advocated only communicating with already known friends and acquaintances. The few young people who admitted to chatting with unknown people noted that this communication was superficial and that they were careful about what they disclosed as well as what they believed about others’ disclosures. A few of the young people did not communicate on the Web at all, particularly those who did not have any close friends at school, in the neighborhood or elsewhere, like Christopher. For these young people who did not have any close friends or trusted acquaintances to chat with, and did not wish to expose themselves to interactions with strangers or to the risk of being harassed, ICT represented a barrier to social interactions. Thus, those young people who did not have any friends in the real world were less likely to access friends via the virtual world. Research on disabled adults has found that many of them visited disabilityrelated Web sites to establish contact with other people with disabilities (Anderberg & Jönsson, 2005; Houlihan et al., 2003; Seymour & Lupton, 2004). This was, however, not the case for the disabled youths I interviewed. Those who chatted with other young disabled people did so by means of MSN and only chatted with people they already knew. They chatted about common experiences, but not explicitly about disability. Thus, the online life of these young disabled people mirrored their offline relationships, as found in many other studies on youth in general (Arnseth et al., 2007; Baym, 2006; Baym et al., 2004; Kaare et al., 2007; Livingstone, 2003; McMillan & Morrison, 2006; Räsânen & Kouvo, 2007; Rice & Haythornthwaite, 2006; Thulin & Vilhelmson, 2005; Torgersen, 2004). ICT therefore sustained and reinforced already existing social ties for young people (Brandtzæg & Stav, 2004; McMillan & Morrison, 2006; Thulin & Vilhelmson, 2005). This conclusion challenges the common assumption that ICT radically transforms the contact behavior of young people and that they seek new friends on the digital town square. Although some young disabled people did seek new contacts on the Internet, most did not. The majority chatted and interacted with already known offline friends and used ICT as a means of sustaining those relationships. At school and in face-to-face settings, they discussed and exchanged digital experiences and activities with their offline friends. For those young people who had no friends in their everyday offline lives, this permeability of the real and the virtual created barriers in their social relationships.

CONCLUSION This chapter has explored the significance of ICT on the social relationships of Norwegian disabled youths using examples provided by a group of


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young disabled people. It has illuminated how their use of ICT as a form of communication has created a digital town square or a central online meeting place that featured prominently in the social relationships of young disabled people. This chapter has shown how accessible and usable ICT can provide opportunities for young disabled people to engage in social relationships, but it can also create barriers for some of these young people. When disabled youths engaged in ICT, disability is made unessential, a potential solitude is escaped, and already existing social relationships are sustained and reinforced. However, barriers also emerge, emphasizing disability and solitude. As a result, opportunities to create social relationships are inhibited. The increasing permeability of the real and the virtual in young peoples’ lives was found to have the most significant impact on the possibilities for social relations mediated through ICT. On the digital town square, young people interacted and discussed joint physical and local experiences and events, such as what happened at school or at shared leisure activities. Just as they did in face-to-face settings, they discussed and shared virtual experiences, such as what Web sites to visit or how to download movies. To engage in these settings, young people are required to be digitally connected to offline friends with whom they can discuss joint experiences on the digital town square. Similarly, they need some mutual online digital experiences to discuss and share in face-to-face settings. For young people who have offline friends, accessible ICT can sustain and reinforce those relationships, provide enhanced inclusion and participation, and may even create opportunities for new offline friendships. However, for those young people who have no close offline friends, even accessible ICT was found to create inhibiting barriers to social relationships, to promote exclusion and alienation, and thus even weaken the potential offline friendships. The permeability of the real and the virtual has generated a dependency on the technologies (McMillan & Morrison, 2006). This dependency is a doubleedged sword inasmuch as it embraces more and more of young people’s everyday lives. Consequently, the use of this technology is vital for inclusion. Further, withdrawal from ICT or inability to engage in digital forms of communication is perceived to be one of the most damaging forms of exclusion. Thus, it is vital to closely examine who is not using ICT, why, and with what consequences (Livingstone & Helsper, 2007; McMillan & Morrison, 2006). The ICT-mediated barriers described by the young disabled people in this chapter testifies to the importance of adequate engagement in ICT.

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Livingstone, S. (2003). Children’s use of the Internet: Reflections on the emerging research agenda. New Media & Society, 5(2), 147–166. Livingstone, S., & Helsper, E. (2007). Gradations in digital inclusion: Children, young people and the digital divide. New Media & Society, 9(4), 671–696. Lorentzen, K. (2007). Nøkkeltall om informasjonssamfunnet 2006 IKT i husholdningene. Oslo: Statistisk Sentral Byrå. Retrieved from www.ssb.no/ikthus. Madell, D., & Muncer, S. (2005). Are Internet and mobile phone communication complementary amongst young people? A study from a “rational actor perspective.” Information, Communication & Society, 8(1), 64–80. McMillan, S. J., & Morrison, M. (2006), Coming of age with the Internet: A qualitative exploration of how the Internet has become an integral part of young people’s lives. New Media & Society, 8(1), 73–95. Ministry of Modernisation. (2009). e-Norway—the digital leap. Oslo: Author. Norwegian Official Report. (2001). Fra bruker til borger En strategi for nedbygging av funksjonshemmende barrierer. Oslo: Statens forvaltningstjeneste, informas jonsforvaltning. Oksman, V., & Turtianien, J. (2004). Mobile communication as a social stage meanings of mobile communication in everyday life among teenagers in Finland. New Media & Society, 6(3), 319–339. Pell, S. D., Gillies, R. M., & Carss, M. (1999). Use of technology by people with physical disabilities in Australia. Disability and Rehabilitation, 21(2), 56–60. Peter, J., & Valkenburg, P. M. (2006). Research note: Individual differences in perceptions of Internet communication. European Journal of Communication, 21(2), 213–226. Râsânen, P., & Kouvo, A. (2007). Linked or divided by the Web? Internet use and sociability in four European countries. Information, Communication & Society, 10(2), 219–241. Rice, R. E., & Haythornthwaite, C. (2006). Perspectives on Internet use: Access, involvement and interaction. In L. A. Lievrouw & S. Livingstone (Eds.), The handbook of new media updated student version (pp. 92–113). London: Sage. Seymour, W. (2005). ICTs and disability: Exploring the human dimensions of technological engagement. Technology and Disability, 17, 195–204. Seymour, W., & Lupton, D. (2004). Holding the line online: Exploring wired relationships for people with disabilities. Disability & Society, 19(4), 291–305. State of Affairs on Accessibility in Norway. (2006). Oslo: Statens råd for funksjonshemmede og DOK. Stienstra, D. (2006). The critical space between access, inclusion and standards in information technologies. Information, Communication & Society, 9(3), 335–354. Thulin, E., & Vilhelmson, B. (2005). Virtual mobility of urban youth: ICT-based communication in Sweden. Tijdschrift voor Economische en Sociale Geografie, 96(5), 477–487. Tobias, J. (2003). Information technology and universal design: An agenda for accessible technology. Journal of Visual Impairment & Blindness, October, 592–601. Torgersen, L. (2004). Ungdoms digitale hverdag: bruk av PC, internett, TV-spill ogmobiltelefon blant elever på ungdomsskolen og videregående skole. Oslo: NOVArapport 8/2004 Tøssebro, J. (2004). Introduction to the special issue: Understanding disability. Scandinavian Journal of Disability Research, 6(1), 3–7. Traustadòttir, R., & Kristiansen, K. (2004). Introducing gender and disability. In K. Kristiansen & R. Traustedòttir (Eds.), Gender and disability research in the Nordic countries (pp. 31–48). Lund, Sweden: Studentlitteratur.

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Valentine, G., & Holloway, S. L. (2002). Cyberkids? Exploring children’s identities and social networks in on-line and off-line worlds. Annals of the Association of American Geographers, 92(2), 302–319. Wei, R., & Lo, V. H. (2006). Staying connected while on the move cell phone use and social connectedness. New Media & Society, 8(1), 53–72. Wellman, B., Haase, A. Q., Witte, J., & Hampton, K. (2001). Does the Internet increase, decrease or supplement social capital? Social networks, participation and community commitment. American Behavioral Scientist 45(3), 436–455. White Paper no. 40. (2002–2003). Nedbygging av funksjonshemmende barrierer Strategier, mål og tiltak for personer med nedsatt funksjonsevne. Oslo: Det Kongelige Sosialdepartement. Whitley, E. A. (1997). In cyberspace all they see is your words: A review of the relationship between body, behaviour and identity drawn from the sociology of knowledge. Information, Technology & People, 10(2), 147–163.

CHAPTER 5

Understanding the Experience of Parenting a Child with Autism Samantha Bursnall, Eilis Kennedy, Rob Senior, and Jo Violet

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t has long been recognized that a disability impacts not only the children involved but the entire family system. Among the plethora of research exploring the impact of disability on family members is a body of research examining the impact of childhood autism on the family. There is a general recognition in this literature that “living with a person with autism can have a devastating impact on all other family members” (Reid, 1999, p. 63). Studies have observed that parents of children with autism typically experience greater levels of stress when compared to parents of normally developing children, children with chronic illness, or other types of disabilities (Sivberg, 2002; Sounders, DePaul, Freeman, & Levy, 2002; Tunali & Power, 2002). Examining the experiences and perceptions of parents who have a child with autism through in-depth interviews is useful because it provides participants with the opportunity to fully describe their experiences and needs as opposed to limiting their responses to predetermined questionnaire categories. Thus, using a thematic analysis, this chapter explores the views of 12 parents of children with autism.1 The findings were presented back to the parents, who confirmed and approved the themes that now form the basis of this chapter.

RESEARCH ON PARENTS OF CHILDREN WITH AUTISM Parents of children diagnosed with autism are likely to experience anxiety, fear, guilt, and emotional stress (Gray, 1994) as well as a sense of loss and despair at their child’s lack of ability to emotionally reciprocate and connect

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to them (Reid, 1999). In a grounded theory study, Midence and O’Neill (1999) found that prior to receiving a diagnosis, lack of understanding and confusion about their child’s difficulties increased parental distress and despair. Particularly distressing was the child’s “different” development, including problems with language, awareness, behavior, eye contact, sleep, pointing, and rituals (p. 277). A lack of adequate resources (e.g., education facilities, appropriate community support agencies), delay in receiving a diagnosis (Fleischmann, 2005), limited access to professionals with knowledge of autism (Sivberg, 2002), and information and support to guide them in the care of their children (Huws, Jones, & Ingledew, 2001) have also been observed to exacerbate family stress. The stress has also been observed to impact negatively on marital relationships (Rivers & Stoneman, 2003) and on siblings who, when compared to other groups of siblings of children with disability, have shown elevated levels of behavioral problems (external and internal) and lower levels of social interaction with the child with autism (Fisman et al., 1996). Siblings have also been observed to get less parental attention and adopt more of an adult role in the family (Reid, 1999). Not surprisingly, parents with better support have been found to report less stress (Weiss, 2002). Obtaining a correct diagnosis of autism has also been shown to help parents understand, accept, and adapt to their child’s condition and form realistic expectations of their future (Midence & O’Neill, 1999). Other research has focused on identifying coping strategies (e.g., Gray, 2003, 2006; Hastings, Kovshoff, et al., 2005; Sivberg, 2002) and the more positive outcomes of parenting a child with special needs (Hastings & Taunt, 2002; Hastings, Beck, & Hill, 2005). Although these studies have made enormous contribution to the disability literature, further exploration on the emotional experience of parenting a child with autism is warranted. In addition, many of the studies exploring the impact of autism on parents and other family members have used standardized questionnaires, which limit the identification of process issues and experiences (Hastings & Taunt, 2002).

THE EXPERIENCE OF PARENTING A CHILD WITH AUTISM Parenting is one of the most important, rewarding, and challenging roles one may be fortunate enough to experience. However, parenting a child with autism often involves additional challenges that take the role of parenting to a higher level of intensity. The interviews provided insight into the experiences and difficulties that the parents of children with autism encountered and the reasons this experience was so intense. As one parent described, the uniqueness of having a child with autism was difficult to understand by anyone other than parents in the same situation. [All parents experience trials and tribulations, it] happens to everybody but it is difficult to get across the twist of the disabled child which is really different [to having normally developing children]. It’s a step up in the kind of thing that you

UNDERSTANDING THE EXPERIENCE OF PARENTING A CHILD WITH AUTISM

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do and I think . . . having a disabled child is the same as having a [normally developing] child except that it’s got a lot of extra responsibility and twists and that’s what people don’t really understand. . . . [The emotions you feel and the experiences you have] are a darker, deeper shadow altogether. . . . Everything is just much, much more intense . . . people with ordinary children just don’t get it.

This chapter describes the context in which parenting a child with autism often takes place (within and external to the family). It is important to note that although presented sequentially and separately, the themes that follow usually occurred simultaneously. This section gives insight into the experiences, stresses, and difficulties that parents of children with autism encounter. These stresses coexist with a range of positive experiences associated with raising a child with autism. Experiencing difficulties does not necessarily mean a lack of positive experiences.

SEARCHING FOR ANSWERS The most emotionally charged time described by parents was when they realized that something was different about their child. The processes associated with discovering a diagnosis of autism and accessing support for their child undermined parents’ sense of control in their parenting role and often left them feeling disempowered and disenfranchised. Trying to gain a sense of control to protect and provide for their child was a major source of stress for parents, which involved them having to search for answers and support.

Discovering a Diagnosis Parents described feeling confused and unsupported when they sought answers for a condition they knew little about. As would be expected, parents said they were unaware, particularly in the initial stages of their child’s diagnosis, of what services were available and what they needed to do to access them. Most said they did not even know what they needed in the initial stages of their child’s diagnosis. One parent observed “how ignorant parents are about what is available and how difficult it is to find out what is available.” Before a formal diagnosis was given, many of the parents perceived their child’s unusual behaviors and differences to reflect their “bad parenting.” This self-doubt was magnified when the child with autism was their first born and parents had no prior experience from which to compare their child. Not surprisingly this left them feeling confused and insecure. I knew something was wrong from about 18 months. . . . First of all I had a feeling like “How come I can get along with all my friends’ children but like my one I couldn’t?” . . . “Why can’t I talk to my own daughter? Why can’t I play with my own daughter?” I thought “Is it me?” [My child with autism] was beginning to cause me problems in playgroups . . . there was just something different about the way he was relating to other babies and other children. . . . I . . . used to go to baby groups and just sit there and sometimes cry. I think things weren’t right, and I couldn’t understand it. Life was very hard.

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Although the time of diagnosis was emphasized as a time of intense stress and confusion, it was just one of many hurdles that required parents to seek answers and support for their child. Some parents searched for years before they were given a diagnosis.

Negotiating the Hostile System One of the major hurdles parents had to overcome in finding a diagnosis and accessing support for their child was negotiating the “hostile system.” The systems of health, education, and social services set up to help parents were perceived to be difficult to negotiate and further exacerbated their confusion, self-doubt, and loss of control. They had countless appointments with professionals (once appropriate professionals were identified), during which time many parents felt their concerns were not acknowledged or were questioned. For children whose special needs were less obvious, finding support was particularly difficult. “The delay you can have from diagnosis . . . finding the right people then getting a diagnosis . . . that’s a huge pressure on people to manage.” Parents described how everything was a battle, how services were often suboptimal, and how there was little regard for their role as carers.

Everything’s a Battle To access support for their children, parents felt they had to fight for everything. “No one’s actually told you what you need or you feel like you’ve had to find everything out and then, once you’ve found it out, you have to fight to get it.” Parents described this process as “traumatic,” “the whole looking into schools and that, I think, was perhaps absolute trauma. Very, very difficult and I think that the way the system is set up is horrific.” Parents felt their views were dismissed and that budget constraints, rather than their child’s actual needs, dictated what supports their child eventually received. Parents perceived the battles for securing support would continue as their child grew: “[I will be fighting] for the rest of my life and, assuming that I go first, I hope that someone will be in place to do it for [him]”. To access the support required, parents noted that one needs many resources, including, energy, time, financial resources, education, and a good command of English. The time and energy required to fight the system for support meant that the role of a parent became blurred and reflected more that of an advocate. “I have the time and the wherewithal and the energy to fight it. If I hadn’t have done, it wouldn’t have come about and I know parents who don’t have that energy and you know sometimes you just want to be a parent? You don’t want to be their advocate so it is hard.” Many parents were concerned about other parents who did not have English as a first language, who themselves had vulnerabilities, or who did not have the internal or external resources to negotiate the hostile system.

Suboptimal Services Many services were of enormous help to parents, especially given the constraints of the hostile system. However, most found at some point in their


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child’s rehabilitation continuum they were confronted with the trauma of having to deal with services that fell short in some way. First, the services were considered to be scattered geographically in that the parents had to attend appointments, sometimes on the same day, at clinics in different parts of the city. Communication was scattered between services, and parents found they had to repeat themselves on seeing new consultants. They did not always know why they were sent to appointments, and the information did not always get passed between relevant professionals. Second, appointments were often difficult to secure with long waiting lists and long waiting times. Also, many helpful services remained unknown to parents because they were not available on a centralized database, not highlighted by other professionals, or not well advertised. Parents said that knowing about the existence of services could potentially save them time and money. “I’ve had to find everything myself you know? Like getting her diagnosed, it’s like ‘How do I do that?’ I had to find out and then I had to go and see the doctor and ask her to refer me. . . . Whereas really I think [we should be told] ‘Well this is how it is, I’ll refer you to these people.’ ” Finally, once parents were connected to services, they highlighted that a lack of consistency between professionals within some services (often as a result of high staff turnover and low levels of communication between old and new staff) was particularly unhelpful and upsetting. Parents also spoke of their experience with services in which there appeared an apparent lack of expertise and knowledge of autism and/or the use of professional jargon, which made it difficult to understand the professional feedback (in reports and at appointments), further isolating them. Often in conjunction with the professional jargon, parents had to deal with professionals who appeared insensitive and unsympathetic. Unfortunately, much of what parents found unsatisfactory in services was mirrored in many schools ill equipped for children with autism (many children of the parents interviewed attended mainstream schools, at least for some time). Particularly unhelpful in relation to schools were teachers who lacked training and an understanding of children with autism. As a result, the children often struggled to make progress in mainstream school and were expected to behave and abide by the same rules as other pupils, which were inappropriate to their needs. This was exacerbated when a child’s difficulties were more “hidden” (e.g., children with high-functioning autism). “I am sick and tired of [the school] saying, ‘yes he has ASD, but he must behave like everyone else.’ It doesn’t make sense. It is like saying to a blind person ‘you should see red, you need to know the difference between red and blue’ and I’m sick of it!” A lack of communication between staff and parents, a general experience of not being listened to and of being misunderstood, judged with no sense of sympathetic listening contributed to the “me against them” feeling between parents and school staff. It seemed many children were left to struggle as did the teachers without training. The most unhelpful thing is the lack of understanding in the school and having to go up there and fight against them all the time. Because they don’t

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THE CONTEXT: ENVIRONMENTAL, SOCIAL, AND CULTURAL CONSIDERATIONS understand the nature of her needs whereas if they did I wouldn’t have to go and explain things and you know? . . . Because they’re not trained, they’re not aware, they’re not bothered.

No Regard for Carers Parents believed that the hostile system took advantage of their role as competent parents and failed to acknowledge the hard work that being a fulltime carer involved. I don’t think [the services/system] recognize how hard it is for us, like you’re carers and having to do a hundred and one things. . . . I’m a lone parent . . . I’d love to go to work . . . but I need to get my [child’s needs sorted out] . . . there is enough for me to do . . . if I got paid for everything I do as a carer I would be very rich.

JUGGLING EVERYDAY DEMANDS In addition to coming to terms with their child’s autism and negotiating the necessary supports and services, parents had to juggle the often competing everyday family demands. Although these everyday demands were not unique to these parents, they appeared to be more intense and concentrated due to the added pressure of the child’s autism. The parents juggled the ongoing changes in their child, their own relationship, and the issues raised by siblings.

Changeable Child Many parents described the process of getting to know, understand, and parent their child as requiring considerable patience and acceptance. They described their children as unique individuals with different personalities, characters, and needs, who still remained a mystery at times. Most parents indicated that their child was unpredictable and that his or her behavior and mood was changeable and difficult to manage on a continual basis. “He’s great fun. He’s very hard work because he’s so up and down. And it’s quite an up and down experience being the parent of him . . . you’re never really sure what you’re dealing with. . . . It’s a rollercoaster. . . . He is very hard to control.” Many parents described their child with special needs as demanding and requiring constant support and attention. “Children [with ASD] are very self-centered and if you’re on your own with a child like that you can sort of get sucked into that.” For some parents, the unpredictability of their child’s condition also related to their vulnerable health condition and the possibility that they could become physically ill at any time. It was common for parents to report that the child’s behaviors were relentless, requiring them to be vigilant at all times. This constant focus and attention required parents to sacrifice many of their own needs. “I could never [work full-time] because I feel I have to be so alert at home . . . and [hypervigilant] about so many things . . . emotionally I could never do that.” As a result of their child’s behavior, parents also


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described having to manage their own discomfort in social and public situations. Social situations provided little respite for the parents as they were required to focus on the child and continually predict their next move. “I feel embarrassed with her and I don’t like people looking at me. . . . But you go to the theater and it’s you know, you don’t know how it’s going to go. If she’s bored by it, it’s going to be really difficult and people are looking around all the time. She starts making a lot of noise and you might have to leave.”

Relationship Stress Parents described being drawn into the child’s world by necessity, which made it difficult to share their time and emotional resources equally around the family. Although one parent acknowledged, “It’s a matter of balancing your life,” many times the child’s needs dictated and influenced the entire family system. “The strain on the family is huge and it continues to be huge and it goes through these ups and downs and when he isn’t at his best, everybody feels it and it feeds into everyone has their own ways of managing it or not managing it.” Given the enormous stresses endured by the parents, it is not surprising that parental relationships were placed under enormous pressure. Although some parents said that their child’s condition brought them closer together— “we found it strengthening”—others felt it had added strain. Some parents were no longer in relationships, and many of the other parents described how the pressures surrounding their child’s autism (particularly around the time of diagnosis) led to difficulties in their relationships. Often a lack of information and support led parents to argue about what was best for the child and what they needed. In addition the high level of care many children required meant that much of the parents’ focus was on the child, and thus little time and energy was left for the relationship. One parent recalled, “There used to be a time when me and my husband . . . [had] terrible arguments just because of her because I was really concerned.” Another parent shared the challenges of her relationship, At that same time [ I ] was finding out Lenny’s diagnosis, his dad left as well. So it was a very, very traumatic experience at the time. . . . You feel incredibly isolated . . . even within a relationship. . . . [Our child needed support] and more time . . . [which] meant that, within a relationship, I wasn’t available to give any time to my partner any more.

Relationship pressures were further complicated by differences in opinion between parents about their child’s condition, often due to one parent spending more time with the child and having a different awareness of their needs. Different levels of interpretation and acceptance about the child’s condition, in addition to the delay often involved in acquiring a diagnosis, also played a role in further perpetuating the stress and relationship breakdown. If you’ve got a child who’s doing something that the mother sees [and] the dad doesn’t . . . and the mom is saying there is something wrong with this child and no one else is backing her up, that puts a huge strain on the marriage. . . . [At

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THE CONTEXT: ENVIRONMENTAL, SOCIAL, AND CULTURAL CONSIDERATIONS the special needs school my child attends] nearly all the divorces went through at the time of diagnosis. So I think it’s that strain, you know . . . they sort of end up growing apart.

Professionals working with families of children with autism also noted the strain on the parental couple relationship due to the ongoing nature of the child’s needs. To deal with an autistic child . . . parenting takes on a whole new [meaning]. Essentially, you are parenting an adult . . . [when other children leave the nest] parents themselves are thinking ‘can I go back to work? Can I have a relationship with my husband? Can I have the house to ourselves?’ These things don’t happen [for parents of children with autism], they’re huge obstacles. And there’s a huge correlation with marriages that break down, with children with autism after the age of 12.

Although it is common for relationships to breakdown in such a situation, many parents explained how they were grateful that they had a partner with whom they could share the stress and burden. Even though some had received professional help for their relationship, many of the parents’ relationships were surviving despite the additional stress. “I’m very grateful that I have [my partner] because there’s some mother’s with children with [autism spectrum disorder] and they’re on their own. My goodness! And to me that would be a hundred times harder. So I like it that [my partner] is there.”

Sibling Stress Parents were particularly concerned that siblings often missed out on quality and equality of time with their parents. Most parents noted that siblings’ needs were compromised on a daily basis due to the demanding nature of the needs of the child with autism. Less obvious but as important was the lack of emotional energy parents seemed to have for siblings. Parents tried to juggle their children’s competing demands, but siblings often missed out because “My daughter [with autism] is my priority now. . . . He [sibling] is in a loser in a way.” Other parents described trying to manage competing interests fairly. She [sibling] is still not old enough, emotionally, to digest all the differences but knows there’s massive differences. . . . So she is a big thing for me. To make sure that emotionally and psychologically, she’s as well balanced as possible. Something that she feels, to this day, and will probably always feel, is the imbalance of time spent. . . . I have had periods where I have actually spent far more time with her than with her brother [with autism] but she doesn’t feel that . . . she still felt it to be the reverse. . . . She fits in with us and what [my child with autism] needs . . . rather than what she needs and I know that that is a permanent balancing act.

Despite parents’ best efforts, siblings still noticed the inequality of time and energy between them and the child with autism. Parents expressed concern and anxiety about who would be available to take care of their child


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when they were no longer able to do so and for many families, the child’s sibling(s) appeared to be the obvious choice to take on the carer role. “She [sibling] will have to be responsible. Even though I don’t want her to feel responsible, you know, there isn’t anyone else. . . . We hope she continues to want to do it. . . . So that’s always a pressure.” These concerns extended to siblings, who naturally assumed responsibility for the carer role despite no formal expectations from the family. “I think you underestimate how much they have to take on board. . . . My [nondisabled] son is taking on that burden and saying . . . ‘Well I’ll obviously have to look after [child with disability] for the rest of my life,’ which is very sweet but not right, really. It’s not his burden.” Another issue some parents found challenging was juggling family rules when different rules applied to the children with autism and their siblings. Siblings would witness their brother or sister “getting away with” behavior that was considered unacceptable for them. Siblings were also hidden casualties of school and community ignorance and as a result were often expected to carry on with everyday activities (e.g., school) despite having their daily lives disrupted by the needs of their brother or sister. For instance, one mother emotionally recalled, Siblings often don’t get any acknowledgment from anywhere of the stress that they have to bear. If they’ve been kept awake all night by their [sibling with ASD] banging on their door, or being very aggressive or snatching their toys or mom and dad not having time for the siblings because they’ve had it up to here [points to head]—all these types of things. And the sibling has to come into school where [teachers think] “there’s nothing wrong with them!” They are expected to get their heads down and get through their working day and have the best results. . . . They’ve got no voice, they’ve got nothing, but they can have as much stress and it’s hidden.

On a positive note however, siblings were also acknowledged as being more responsible, mature, and empathetic. “One blessing that I would never, ever have anticipated has been the development of more generosity in the teenage years . . . and it’s gone on from that into their adult lives. . . . They talk about it as if he has taught them so much, so there is great good there.” This theme indicates that like parents of children with ASD who experience intensity in parenting, siblings also endure a magnification of typical sibling rivalries and competition that are likely to span into adulthood. Juggling these sibling issues placed another extraordinary demand on the everyday experience of parents.

EMOTIONAL ROLLERCOASTER From the time they noticed that something was different with their child, parents described experiencing a rollercoaster of emotions that varied in intensity and duration. Some emotions were stronger than others at different times, and some were experienced simultaneously or not at all. These emotions were a common and natural part of the adjustment process for parents

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but, if left unchecked, contributed to parents’ sense of lack of control. The rollercoaster included emotions such as devastation, denial, grief and loss, guilt, depression, stress and exhaustion, and a sense of mixed blessings.

Devastation All parents responded to their child’s diagnosis differently, but it was common for them to feel devastation and shock as they processed what the official diagnosis could mean for their child’s future and ultimately the family system. One parent recalled, “I know some parents just sort of shut down completely for a while. . . . One father said that for six weeks he stared at a brick wall and didn’t sleep. He just couldn’t communicate with anybody. He couldn’t speak, when his son was diagnosed.” Devastation and shock over the period of the diagnosis (and sometimes for a while after) had implications for how much information parents were able to process and understand because “over a diagnosis period . . . you feel so raw, and it’s so horrible, and actually perhaps you can’t take things in that are being said to you.” Indeed, most parents did not expect to have a child with autism and therefore information to the contrary required time to process. Their sense of control and predictability about the future was threatened and left them feeling vulnerable.

Denial Given this devastation and shock, it is not surprising that parents reported experiencing denial, particularly (but not exclusively) in the early stages of their child’s condition and diagnosis. Denial seemed to be a common (unconscious) defense mechanism to reduce their anxiety by denying thoughts feelings or facts that were consciously intolerable at the time. Parents acknowledged denial to be a natural and necessary process but, if left unchecked, described it as unhealthy and unhelpful for moving forward and gaining access to help. You do go into denial because you think “this can’t be happening, this can’t be happening to my child” and so on. . . . Virtually anybody whose given any sort of diagnosis, even though in the long term it will be a relief [to have answers], the immediate effect might be denial because you need that period of time to come to terms with it. . . . It’s when it gets five years down the line and you’re still stuck . . . that’s when problems start and there needs to be some [help] where people are given time to grieve about it but then they need to be asked to move on if that child’s going to make any progress.

Interestingly, some parents believed that fathers tended to stay in a state of denial for longer than most mothers, perhaps due to the mother generally having more time with the child (e.g., taking child to appointments, therapy, etc.) and openly discussing the child’s condition with others. “I felt very unsupported because I think men, in some ways, don’t know how to process it all when their child is diagnosed with a disability.”


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Grief and Loss Naturally, most parents have hopes, dreams, and expectations for how their children are going to grow up and live their lives. When a child is diagnosed with a condition that may prevent the actualization of these hopes and dreams, however, an unexpected life course is usually presented to parents requiring them to reevaluate their own and child’s futures. There’s grieving, because when you have a child and you think “Oh I’m going to do this with this baby, and that with that baby and I’m gonna . . . school uniform and take them to school” and then all of a sudden you’re landed with that official “there’s something wrong or not right.” . . . It’s a loss . . . You have this thing where you’ve forecast what you think your life is gonna be and then, all of a sudden, that’s taken away from you and you don’t know what it’s gonna be.

Parents expected that they would be likely to grieve at every milestone or life change that represented their previous expectations and hopes for their child’s future.

Guilt One of the strongest emotions many parents felt was guilt. The child’s diagnosis came with many questions for parents who searched for answers and reasons for their child having special needs. They often turned the blame inward. I wanted a natural birth, I was brainwashed into wanting a natural birth and I feel very much that I might have hung on for too long . . . although the hospital is “in denial” [and says] it has no effect on it, it is still in the back of my mind—if I hadn’t have hung on for so long . . . would he have been autistic? It does cross your mind. First of all I thought it’s maybe something that I did in my pregnancy or maybe it was something that, things I’d fed him or maybe just anything. Clutching at straws completely! . . . You can’t stop somebody feeling those elements of guilt or responsibility for it. As long as you’re supported in that space and time, to understand that that is quite normal and natural.

Parents recognized that their guilt, like denial, was a common and natural emotion. They also recognized that if left unaddressed, guilt could cause extreme anxiety and depression.

Isolation All parents identified feeling emotionally isolated and alone at times, even from family and close friends. Parents felt as though they were alone in that no one else could know what it felt like to have a child diagnosed with autism. “I remember thinking ‘everyone’s children are normal’ and that was a huge sense of isolation.” Some parents even felt isolated within their relationship, particularly when there was communication breakdown and stress. “I did feel so unsupported and very, very isolated and I still do. . . . You do feel

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incredibly isolated and also even within a relationship, I think.” “Initially I felt alone because [my partner was away a lot] . . . and he was so out of it that he couldn’t connect even when he was home so consequently I did find the early years much more about drawing on whatever resource I did have. . . . I was very unhappy and very isolated, very isolated, just got through each day.” Although extended family and friends are often described as important sources of support for families who have a child with autism (indeed, they were acknowledged in these interviews as good supports), many parents highlighted that the opposite was also often the case, especially in the early stages of a child’s diagnosis. In fact, it was suggested that extended family and friends were often sources of great stress and isolation. For example, family members in denial of the child’s autism challenged the parents’ concerns and maintained unrealistic expectations of the child. They often gave inappropriate advice about how to help the child and for some parents, relatives or friends simply withdrew from spending time with them and their child, which increased their sense of isolation and feeling judged as bad parents. “I really don’t think people understand . . . [the] prejudice and the stresses that come with it.” It’s very difficult with other parents too, actually. Even your own relations to be honest with you. [They say] “you’re making a meal of a perfectly sweet little boy.” And it’s not meant unsympathetically, but there is an element to it that is . . . it would just be time and again; that sort of reaction. And [family] would say something like, “Is X better yet?” In that sort of slightly peremptory way . . . so you do feel very lonely.

Parents experienced schools, family, friends, and community members to also be unsympathetic and intolerant. It was clear to the parents, however, that these attitudes stemmed from an obvious lack of understanding and education about the child and their needs and reflected an ignorance and fear about how to interact with these children. One parent observed, “You have to live with these children to know what it is like. ” “My mum and dad are from a different generation. . . . They try to understand as best they can but I don’t know. . . . My friends are there and they say they will be there for [my child] but they just don’t get it as well . . . unless I was to give her to them for a month, 24/7, then they might understand it.” Despite feeling isolated, however, one mother was philosophical about the exclusivity of the experience. “That’s right, people shouldn’t know what you go through because if everybody knows everyone’s pain, life would be just too depressing.”

Depression, Stress, and Exhaustion Given the enormity of their pressures, their child’s vulnerability, and everyday stresses and long-term worries described so far, it is not surprising that parents experienced depression at times. “The situation I’m in . . . is depressing me.” [A few months ago] I’d have said that there’s no hope. It’s just all going to end in blackness and tragedy. I was pretty depressed about it . . . I think [life


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was throwing a lot of pressures and] . . . her seizures had reappeared and there seemed to be this very strong, sort of strong feelings about unknown, not anxious exactly, but gloominess about what would happen.

The effort and emotional investment involved in negotiating the hostile system (see following) as well as trying to continually juggle competing demands, led to stress and mental exhaustion for parents. “Stress, stress, stress all the time. Life is not 100 percent.” Indeed, the pressures were so stressful that it seemed parents were at risk for mental health difficulties. “Feeling very unsupported and grieving the loss of what I thought my child was gonna be, it was the closest I’ve ever come to having a mental breakdown.” In addition, parents felt exhausted and emotionally defeated at times, being sapped of their emotional energy and strength. “[I’ve had] 10 years of no sleep.” Not surprisingly this exhaustion made it even more difficult for parents to muster up the strength and energy to fight the hostile system. “I haven’t got the emotional strength for people to be confrontational with me . . . I think it’s all to do with emotional wear and tear, you’ve gotten sort of ground down.”

Mixed Blessings Parents experienced conflict between the acknowledgment that their child needed support and their reluctance to fully embrace the support because it made their child’s needs real. What they really wanted was for their child to be normal and not need support. The acceptance of support was ultimately the acceptance of their child’s disability, which stripped parents of any form of denial they may have been experiencing. One professional described the diagnosis and presentation of a label as a “mixed blessing.” On one hand, it empowered parents because they had an answer to their questions that presented them with a pathway. On the other hand, however, it was a realization that this was a label for life and presented many obstacles for which parents had not bargained. This is illustrated in the following experiences. We were still hoping . . . that he’d end up in a mainstream school. ‘Cause you do, as parents you know, that’s what you want. In a way you fight hard to get your child to [a special school] and you really wish he wasn’t going to go there. Another thing that I have also found difficult . . . I am a bit embarrassed to say it, but I’m going to say it. Part of me doesn’t want anything to do with NAS [National Autistic Society] and disability because I don’t want him to be like that. I don’t want him to be like that. I want him to be normal, you know!? And I find that personally difficult. I find it difficult to belong to that group . . . and I think maybe other people feel like that.

A group of parents reflected on how the hostile system exacerbated their doubts and emotional turmoil. [In] relation to denial, partly there is an element of you don’t know whether you want the support, so the fact that it may or may not be available is particularly emotionally exhausting because really in an ideal world you don’t want

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THE CONTEXT: ENVIRONMENTAL, SOCIAL, AND CULTURAL CONSIDERATIONS your child to go to a special needs school, you don’t want your child to [have to have] OT and S&L, you want your child to get up and be fine. So the fact that it is very difficult to access these things is an added stress in terms of an emotional knife, it makes you think “do I need it if they’re not offering it to me?” and you worry about whether it is you being mad! But you’re not mad.

It was acknowledged that this feeling did not last, but seemed to once again be a natural and common experience.

LOSS OF CONTROL A single theme that resonated across all the parents was a real or perceived lack of control in their role as parents. Rather than being able to provide for all their child’s needs as they developed, parents often found themselves having to seek answers and supports outside of their own resources because their children required special support which they alone were not always able to provide. On many occasions they were dictated to by services and professionals about what their child needed and not surprisingly felt stripped of their sense of control in their parenting role. I think there is a theme of being out of control as a parent. So you go through this huge thing, you process [so much], they say your child needs one-on-one, and needs whatever, whatever, and then they recommend a mainstream school and you sort of think “why am I so out of control, you know?” We’re people who are used to making decisions and choosing schools and it’s very hard, so somewhere . . . [among the external pressures and] processes I think there is a parent being out of control.

This perceived lack of control took its toll on the parents’ confidence, and there appeared to be a fine line between supporting parents and stripping away their perceived responsibility and control. “Why do I feel [guilty]? It’s like from mother and toddler group, it’s from nursery, it’s always been, ‘Mrs. X, could you come and have a word because Johnny is not . . . ’ I’ve been told that I am not doing a good job from when he was two, so I feel crushed.” Their parental instincts were to provide for their child and meet their needs, but their capacity to do so was hampered by external systems over which they had little or no control. “[It] . . . is just so awful . . . and it’s very out of your control. . . . You’re used to making decisions yourself, and following them. But everything’s taken away from you really.”

A NEVER-ENDING STORY Unlike parenting a typically developing child, the responsibility for parenting a child with autism is ongoing and is likely to remain intense for the parents’ entire lifetime. Parents described how they experienced new challenges as their child developed. They expected that as their children grow, develop, and learn new skills, they would be confronted with new issues. The parents recognized that normally developing children would become independent


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and eventually “leave the nest,” whereas many children with autism would continue to require high levels of emotional and physical support from their parents to ensure their safety and survival. They observed making the transition from being a parent to being a carer as their children aged. Parents described this life-long expectation that lay ahead. I think the transition from parent to carer is a big, big, big transition and it occurs around seven to eight years old. It’s not that you’re no longer a parent but you start to realize that actually you’re turning more into a carer, that other eight-year-olds don’t require this level of input and that’s when I think you start to feel the burden of them growing up. It sort of hits you. When they’re little, you’re a full-time parent anyway.

Figure 5.1 illustrates a conjugation of the parents’ stories and themes described in this study, highlighting the process of the ongoing nature of parenting a child with autism. It must be noted that this experience is not a linear process—it differs in extremity for different people—and the issues identified are not mutually exclusive and may coexist. The experience of having a child with autism is diverse and complicated. This chapter is based on interviews with parents of children with autism and has provided an in-depth account of the process of parents’ emotional experience. We have confirmed that parents find having a child with autism to be more demanding and emotionally intense than having neurotypical children. It was common to experience extreme stress, social isolation, family stress, and exhaustion. Figure 5.1 shows that when noticing something is different about the way their child is developing, parents tend to begin a quest in search of answers to their concerns. The search for answers resulted in a diagnosis, from which point they sought measures to support their child. However, the search for answers may take years, and for some people a formal diagnosis may never be reached. It was often a diagnosis that helped parents in this

Figure 5.1. Parenting a Child with Autism: The Never-Ending Story.

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chapter eventually accept and adapt their life accordingly, but the time and pace of this acceptance differed for everyone. Autism is variable and the needs of children change as they grow (e.g., puberty), experience new milestones (e.g., change schools, finish school), or develop associated medical/behavioral/emotional issues (e.g., epilepsy, depression). This change may require a further search for answers, diagnosis (of the issues), and acceptance/adaptation for parents. This chapter has highlighted the importance of the ongoing nature of autism and its subsequent relentless impact on the child and their family. As shown in Figure 5.1, life outside of the world of autism continues for parents, including everyday demands (relationship and sibling demands) and negotiating with services. These daily demands are often magnified due to the additional demands involved with having a child with special needs. Different levels of emotional turmoil accompanied this experience and led to high levels of stress and exhaustion and a perceived loss of control in their parenting role. This feeling of loss of control, to our knowledge, has not yet been formally identified in the literature. In summary, parents reported that having a child with autism was demanding and emotionally intense and that their role as a carer was likely to continue for their lifetimes. This chapter has provided a rich context for understanding the experience of parents. Without an in-depth insight into the experience, it would be difficult to appreciate the intensity and relentlessness of the parents’ everyday life. Only by understanding this experience, from the parents themselves, can services, friends, family, and professionals implement strategies to help and avoid those that negatively impact on their parenting role. Indeed, one of the factors contributing to parents’ sense of isolation was ignorance about their experience. Given the isolation and exclusivity many parents feel, and the benefit they can experience through contact with others who understand their experience (Huws et al., 2001), this chapter will hopefully give parents the opportunity to hear others’ stories and feel more understood and less isolated.

NOTES We extend our appreciation to the parents and professionals who gave their time to be interviewed and review feedback, as well as to the Camden LAA for funding the research that formed the basis of this chapter. 1. The children of the parents interviewed were diagnosed with autism. Some of the children in this study also had accompanying developmental delay or learning or physical disabilities. Two parents had children who were not diagnosed with autism but had social and communication difficulties and learning and physical difficulties. These parents were included because the themes in their interviews did not differ in content to the parents of children with autism.

REFERENCES Fisman, S. N., Wolf, L. C., Ellison, D., Gillis, B., Freeman, T., & Szatmari, P. (1996). Risk and protective factors affecting the adjustment of siblings of children with


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chronic disabilities. Journal of American Academy of Child and Adolescent Psychiatry, 35, 1532–1541. Fleischmann, A. (2005). The hero’s story and autism: Grounded theory study of websites for parents of children with autism. Autism, 9(3), 299–316. Gray, D. E. (1994). Coping with autism: Stresses and strategies. Sociology of Health and Illness, 16, 275–300. Gray, D. E. (2003). Gender and coping: The parents of children with high functioning autism. Social Sciences & Medicine, 56, 631–642. Gray, D. E. (2006). Coping over time: The parents of children with autism. Journal of Intellectual Disability Research, 50(12), 970–976. Hastings, R. P., Beck, A., & Hill, C. (2005). Positive contributions made by children with an intellectual disability in the family. Journal of Intellectual Disabilities, 9(2), 155–165. Hastings, R. P., Kovshoff, H., Brown, T., Ward, N., Espinosa, F. D., & Remington, B. (2005). Coping strategies in mothers and fathers of preschool children with autism. Autism, 9(4), 377–391. Hastings, R. P., & Taunt, H. (2002). Positive perceptions in families of children with developmental disabilities. American Journal on Mental Retardation, 107(2), 116–127. Huws, J. C., Jones, R. S. P., & Ingledew, D. (2001). Parents of children with autism using an e-mail group: A grounded theory study. Journal of Health Psychology, 6(5), 569–584. Midence, K., & O’Neill, M. (1999). The experience of parents in the diagnosis of autism. Autism, 3(3), 273–285. Reid, S. (1999). The assessment of the child with autism: A family perspective. Clinical Child Psychology and Psychiatry, 4(1), 63–78. Rivers, J. W., & Stoneman, Z. (2003). Sibling relationships when a child has autism: Marital stress and support coping. Journal of Autism and Developmental Disorders, 33(4), 383–394. Sivberg, B. (2002). Family system and coping behaviours: A comparison between parents of children with autistic spectrum disorders and parents with non-autistic children. Autism, 6(4), 397–409. Sounders, M. C., DePaul, D., Freeman, K. G., & Levy, S. E. (2002). Caring for children and adolescents with autism who require challenging procedures. Pediatric Nursing, 28, 555–564. Tunali, B., & Power, T. G. (2002). Coping by redefinition: Cognitive appraisals in mothers of children with autism and children without autism. Journal of Autism and Developmental Disorders, 32, 25–34. Weiss, M. J. (2002). Hardiness and social support as predictors of stress in mothers of typical children, children with autism and children with mental retardation. Autism, 6(1), 115–130.


CHAPTER 6

Through My Rose-Colored Glasses: When Disability Strikes a Health Professional Melissa Kendall

Through rose-colored glasses: With an unduly cheerful, optimistic, or favorable view of things: see the world through rose-colored glasses. (Answers.com, 2007)

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hat causes us to follow certain paths in life? Life presents us with so many intersections, each with so many roads leading in an endless possibility of directions. Yet at each intersection, we select a road to follow, sometimes intentionally with a clear purpose and goal in mind and sometimes unintentionally in a haphazard and chance way. At other times, we are channeled down certain roads by the environmental forces that are surrounding us. In pondering these decisions, what emerges as key is that these roads that we choose or are forced to choose lead us on a journey that is unique. Nobody else will follow these same roads, and there is no definitive map which tells us what will lie ahead. Sometimes our choices prepare us for what lies ahead, and sometimes nothing can prepare us.

THE PROFESSIONAL IN THE MAKING It is with this thought that I wonder why I chose, so clearly in my mind at the age of 15 years, to study psychology, the study of cognition and behavior, the study of the human mind, that vast array of neural connections and gray matter that remain as mystical today as they were at the beginning of time. I vividly recall sitting in this poky little room at the back of the common area at the school I attended for my entire school life, a school I hold dear for fostering the work ethic I now have. At the time I was in year 9 and in this little room was a career counselor, one of my senior teachers, my parents, and

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myself. It was our collective task to plan my future vocational path as I had to choose electives for the coming years and these would determine what I could continue to do at university. So here I was pondering the variety of vocational options available to me and time after time, I returned to psychology as a career choice, drawn to the mystic of it as well as the promise of having a life role that meant something. Did I even truly understand at that time what psychology was or what a psychologist does? Probably not, and although I don’t recall with clarity, I suspect that in my naive teenage mind, I thought that by studying psychology, I would learn all the answers. I would know why people behave the way they do, I would know why people think the way they do, I would know why people feel the way they do, I would know exactly what controls what within the human brain and most of all, I would know how to fix it. I would be able to help anybody that had some disturbance in thought or behavior or emotion. I would understand how people act in groups, how children develop, and how we learn. From this early point in my life, I had put on my rose-colored glasses and, in my naiveté, adopted a professional stance. The stance I adopted was of the all-knowing and all-conquering professional. And I didn’t waver; not once in the next three years after I chose this life path did I veer off course. With my mother being a nurse, it is perhaps not surprising that I chose to follow a path in the helping professions, and yet as I enter my 38th year of life, I find that I am nowhere near where I had envisaged. I don’t really understand human cognition, behavior, or emotion in the all-knowing way that I expected. I can’t predict how people will behave in groups or how people learn and I can’t fix people. Indeed, my current world-view is that this is a task that cannot be achieved in the way that I had anticipated or hoped. What appears realistic for me now is to understand some minute aspects of thought, behavior, and emotion as they emerge within my past, current, and future research endeavors. How I reached this conclusion is as much a journey of discovery as the one I aim to achieve through my research, but it defines who I am and how I came to be at this point. What I describe next is historical. It tells of this journey, from the naive teenager to the assuming professional, with rosecolored glasses. And it tells of how I lost those rose-colored glasses, was left in the dark, blind and fumbling, to understand the simplest of things. It tells the story of how I had to find my way back, to be able to see clearly again, no longer through rose-colored glasses but in the bright light of reality, human suffering, and human experience.

THE WORST DAY OF MY LIFE A phone call from my mother at 6:45 P.M. on Friday September 12, 1997, less than three months after my daughter was born, changed my life forever and became the catalyst for not only my ongoing career path but also the context within which my passion for research emerged. My brother had been hit by a car crossing the road, and his injuries were numerous. These included

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a badly broken leg (near the hip), a bruised and damaged left lung, dislocated left shoulder, and deep scars in his right hand. But that wasn’t all. The one injury, given my educational background, which I dreaded to hear, emerged shakily through my mother’s voice. “He has head injuries, is unconscious and his condition is critical.” I was at an intersection, but this time I had no choices. The road that I would follow had been thrust on me by fate. While I knew that this meant my own life and the life of others around me had forever changed, the coming years would challenge all that I thought I knew about injury, disability, and rehabilitation. No longer would my experience of disability and my notions of rehabilitation be filtered through a textbook. No longer would I be able to reduce the concepts of autonomy, self-determination, social support, and human worth to what was advocated by rehabilitation professionals. The fact is that working with injury and disability through the rose-colored glasses and espoused values of the rehabilitation profession and living it were two different things. The void was larger than anyone who has not been personally touched by this experience could understand. My previous life experiences and education held opposing functions; they were both good and bad. On one hand, they helped me understand the continuous terminology, jargon, and hidden messages that the medical and allied health professions conveyed and helped me become the conduit through which my parents could understand the enormity of the situation. They helped me call on networks and colleagues and resources that the layperson couldn’t possibly hope to have in situations where comprehension failed me. They helped me rationalize, objectify, and distance myself in some instances where the pain was too much. But they failed me miserably in trying to plan and prepare for what lay ahead. The simple fact is that the void was too big between the ideal (as I knew it) and the actual (as I lived it). What should happen (according to rehabilitation philosophy and espoused practice) doesn’t. Not all rehabilitation professionals truly value the whole person, not all rehabilitation professionals understand the social construction of disability or believe in social justice, and not all rehabilitation professionals have the capacity for empathy that I believed they did. What happened? Had I been lied to for all this time, or were these rehabilitation professionals still looking through the same rose-colored glasses that I had now lost? This I will probably never really know because I cannot return to the all-knowing professional paradigm within which I previously existed. I now had two hats, one professional and the other personal, but without the capacity to ever truly remove one hat and wear the other. These roles were merged, and it was my challenge to make them complement rather than oppose each other. Not an easy task. The situation required me to call on all of my resources, both internal and external, to help guide me through that dark tunnel within which my brother nearly died, but from which he survived a traumatic brain injury and emerged changed but triumphant. But a brain injury doesn’t just happen to the person that is injured. As Lezak (1988) put it, a brain injury is a family affair. The family is forever changed, not just by the injury itself, or by the remaining impairments to “body structure or function,” or by the “activity and participation

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restrictions” for the injured individual but also by the rehabilitation environment and the way in which each family member’s life interacts with and is changed by the rehabilitation experience. The despair of the intensive care unit, the uncertainty regarding life or death, and the machines that constantly beep and instigate a mini-tornado of anxiety each time can never be forgotten. There is the agitation of your family member in their unconscious state paralleled by the hope that (despite knowing differently) alights each time they open their eyes, or take an independent breath, or squeeze your hand, and the hope that is crushed each time that progress is not noted. There is the bruising that emerges in the most extensive tones of purple, brown, and black, like a patchwork quilt covering the person beneath. There is the feeling of being too scared to touch but needing to, just to make sure that they are still there and it is not just a bad dream. There is the sense of pervading doom that fills the air when other families experience the ultimate loss (despite the best intentions of staff to hide this). There is the “in your face” experience of pain and loss of others around you, which you experience as if it were your own. There is the immersion of yourself in their experience also, although it is a job you never wanted. There is the sickness that you feel deep down inside your stomach that takes your breath away and belies your own deep-seated fear of facing the same loss. This occurs against the backdrop of the constant activity of the ICU, a place with no night and day. As people constantly buzz around you, you watch the stories of trauma unfold (both your own and others), but you have no script to follow. You cling to every scrap of information you receive as if this will help you understand the plot. Yet the information only comes in dribs and drabs, never really telling you the entire story. You are caught up in a whirlwind with no control and the most overwhelming sense of helplessness. These are pervasive aspects of the family’s every living minute during these early few weeks or months and, for some, years. In hindsight, after speaking with my brother many years later, these are experiences that belong with the family. The injured person is usually blissfully unaware (at least this was so in our situation). Thank God for small mercies. Nothing can prepare you for this. There is no book you can read or class you can take that guides you on how to deal with trauma. Even for those who work with trauma every day, the roles are different, and being on the receiving end is a totally new kettle of fish. While the ICU and hospital experience was something that was not so familiar to me, it was familiar to my mother. As a professional, you may have seen this happen to someone else and their family a million times and, with your professional hat on, maintained a safe distance. But when it is your mother, father, sibling, or child that you see lying helpless, hooked up to a multitude of machines, the intensity of the experience is often all-encompassing. There is no escape, and avoidance is not an option. My mother still tells me stories now of times when she is called to the ICU at the hospital where she works and how she feels sick to her stomach each time, how the flood of memories comes rushing back in torrents of anxiety. As I said, this lives with you forever and changes who you are, but you would do it all over again if the need arose and you would cope, because you have no choice.


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But how do you cope? The most certain thing I can say here is that you don’t feel like you are. You go into automatic pilot, and coping is not so much a conscious effort as it is trial and error, sheer determination, and unconditional love. The things I found helpful were varied, and my reflections on their effectiveness are only apparent in hindsight. I learned there was a need to recount my experience, to other family and friends, colleagues, and whoever else would listen (even the lady at the canteen who serves you your fifth cup of coffee for the day). It was almost as if by telling others, something would change. Perhaps someone would give you some positive information, some reassurance that this is only temporary and that all will be good in the end. Maybe someone had been in a similar position and they would be able to offer some words of wisdom or reveal some tidbit of knowledge that you hadn’t acquired yet. Realistically, of course, this was never going to happen. All people could offer were platitudes. Yet somehow I found them comforting (or as comforting as anything would be at that point in time). Knowledge is power, and in a situation where all is foreign and nothing is certain, I learned that it was so important to ask questions. It was important to know which drug was being given through the drip, what each sound that emanates from each machine means, what each word written on a chart means, and what every gurgle and movement signified. When I didn’t do this for fear of upsetting or annoying the staff, I would truly believe in the movie version of consciousness where my brother would suddenly wake up and ask what was for dinner (despite the fact that I knew deep down this was not the way it happened). Asking questions was my reality check. It kept me grounded in what we could realistically hope for at that point in time, and I am glad I chose to do this. Yet I often wonder even today, how many others don’t ask the questions. How often do people continue to hide behind ignorance? How do they cope when the reality of a poorer outcome than they expected occurs? At other times, my mind would start to race, and catastrophizing thoughts on situations would develop. I call this getting the “what ifs.” What if he doesn’t wake up? What if he can’t talk again? What if he doesn’t remember me? What if he can never get a job or a girlfriend or a house? Yet these thoughts only served to heighten my anxiety, and I consciously tried to avoid them, knowing that they were counterproductive. Indeed, the two polar reactions that I experienced (unrealistic hope and the what ifs) emerged from what was my fear of the unknown and my need to have an explanation for everything. Somehow by explaining something, we feel much more in control. Yet the reality is that there is no certainty and there is no control, and whenever I avoided the two extremes and accepted this uncertainty, I was much more able to cope in the here and now. I must also make mention of what I have called the newly acquired ICU family. As I said earlier, you are inevitably drawn into the lives of those around you, merely because of the close and highly personal nature of the ICU environment. It is this group of people that you see every day, with whom you share progress stories, who hug you when you aren’t coping and whom you hug when they are not coping. It is this family that supports you in those moments where you feel most vulnerable (e.g., when you are asked to leave

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the room for some unknown procedure), and it is this family that gives you the strength to keep going. Although you never asked for this new family, the support offered within those relationships is priceless and cannot be provided by any other family member or friend that you have because they simply don’t exist in the same emotional place that you do. One woman we met while my brother was in the hospital lost her husband to a brain tumor during the time that we were there, and despite the gravity of her loss, she still asked about my brother in her moment of grief. This is the type of support that cannot be quantified and will be forever remembered. In fact, we maintained contact with her for years afterward, even if just through Christmas cards, because she was such an important part of our lives at that time. Yet life could not for me exist solely within the confines of the hospital. Despite the guilt and apprehensiveness I would feel as I left the hospital each day, afraid that this may be the last time I saw my brother alive, I had to go home every night and feed a family, bathe the baby, wash the dishes, and fold the clothes. I had two lives, and the truth is I needed to have two lives. I needed to have my normal life as well. Just to have the mundane was a welcome respite from being at the hospital, to lessen the intensity of emotion, and to maintain a more objective view of reality, without which I am sure would have been extremely detrimental to my mental health. It was essential not to lose these other parts of my life, for they gave me the strength to return the next day with the added advantage of the fact that I have probably never enjoyed these tasks more than I did at that time. Within these times at home, as I would reflect on the days events, I discovered one of the most helpful things for me was to write about those events and experiences. Writing helped collect my thoughts, process the information that I had managed to garner from interactions with staff, detail progress (or lack thereof), and vent feelings of frustration, anxiety, and overwhelming sadness. It helped objectify a situation that wasn’t objective and it helped tell a story—my story. It provided an ongoing record of where we had been and how far we had come, and this was so important, to recognize progress. I found many times I looked back over what I had written the previous week, only to find I wasn’t in that place anymore. While everything felt like it moved in slow motion on a daily basis and you would become disheartened at a perceived lack of progress, when you scanned back over writing from the previous week, it seemed like it was an eternity away. It was a place that I had moved on from, a place that I never wanted to return to, but a place that I would never forget. What I described about my experiences of ICU highlights it to be one of the most life-changing and significant experiences that one could endure. Yet even today, I find it perplexing that this experience is not recognized by rehabilitation professionals within research or at a clinical level for the enormity of its impact. As a professional, when I read literature on the family experience, I read of coping with ongoing behavioral challenges and the burden of providing personal care for a family member with a brain injury and the strategies to help with memory deficits. I find paper after paper written about caregiver burden, their need for social support, and their need for coordinated personal care services. But I never read about the ICU experience, apart from within


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the personal narratives of those who have lived it. Indeed, the literature is lacking when it comes to recognizing and validating the early hospital experience for families after a loved one sustains a brain injury. This lack of recognition at a research level is paralleled by a similar lack of recognition in the clinical setting. I remember one time hearing a respected health professional relate to me in a professional context their own frustration with family members of people with brain injury (not knowing that I was one of these people). He said to me he just wished the families would get over the hospital experience because he was sick of hearing about it and they should just move on. At this moment I fully appreciated the great divide between what we know as a professional outsider and the experience of those who live it. Yet you cannot just move on from this experience, you cannot minimize its importance, and you cannot forget; in all honesty, you don’t want to forget. In this situation, my personal hat tells my professional hat that I believe it is only when we, as rehabilitation professionals, recognize and respect the importance of this experience for the family that we will truly be able to foster therapeutic relationships with those families.

FRIENDSHIPS Up to now, I have spoken of what this means to the family as I experienced it as a sibling. Yet even from this early stage, through my own grief, I had moments of awareness of the importance of friends. The importance of their presence for the injured person and the importance of their presence for the family to share the load was something that I recognized very early following my brother’s injury. For a single male in his mid-twenties, friends are a larger part of his life than you are as a family member, and this is reflected in your ignorance of what occurs in his life on a day-to-day basis. I didn’t know what my brother was doing when that car hit him, and I wasn’t with him. But one of his friends was. I didn’t have to see him lying unconscious on the road, but his friend did. I didn’t have to see the passing doctor and then the ambulance officers fight to stabilize him right there on the asphalt. But his friend did. I didn’t know where he was the night before the accident. He was with his friends, the same people he lived with and played sports with and went out with. These people were the most important people in his life at that point in time. And I was acutely aware of this in the early days. They helped fill in the gaps in my knowledge. What slowly emerged during these early days following my brother’s injury was an awareness of not only the importance of friends but also their relative exclusion from the rehabilitation setting. They were never included, apart from being at the end of a Chinese whispers chain that started with the medicos, passed through nurses, the family, and onto them. To be honest, although aware of it as a family member, you hold these notions of mutual exclusivity, almost as if at this point you felt like they had no right to be there. So while I was aware of their exclusion and to some degree supportive of it at the time, I can reflect now on the possible impact that this may have had for these people. No one really considered how this affected them, despite

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the fact that their friend as they knew him was lying unconscious in a hospital bed. How did they observe and assimilate the image of their friend through the indignity of restraints or the gut-wrenching sound of the nasogastric tube being reinserted after it had been pulled out for the 10th time that day? Nobody stopped to consider how traumatic this must have been for them. No one explained to them that the person who would emerge, after all the rehabilitation and recovery, would probably not be the same person they knew before. No one offered them counseling, or included them in physiotherapy sessions, or invited them to take their friend out for the day. And most of all, nobody explained to them that the injured person would need them, as a friend, more than ever during this period of recovery. Early on, they came in numbers, waiting patiently outside the intensive care unit for their turn to come. They tried to help and would often sit there talking to my brother, telling him about all the “days of our lives” dramas that permeated their pre-injury conversations, with my brother being a passive recipient. Other times they would apprehensively ask questions of the staff. At other times they would just sit there, the concerned looks on their faces betraying some signs of their inner fears. But as time passed, these moments became fewer. As my brother slowly but surely emerged from unconsciousness, the visits became fewer. There wasn’t a time where I could say this changed, perhaps because of my own oblivion or perhaps because it happened so gradually as to escape notice. But in the end, they just seemed to fade away, pursuing their own lives and allowing family the exclusive right to fill the days. These fleeting early thoughts on the importance of friends were encapsulated in time by the need to live the experience of recovery with my brother. They didn’t engender daily thought, they just occurred as momentary glimpses of reality. So day after day, for three months, I drove the 30-plus kilometers with a baby in tow to watch my brother give the fight of his life. The journey from the ICU, to the high-dependency unit across the hall and then to the brain injury rehabilitation unit was a long one, and this experience alone could fill a book. With each transition came a raft of new insecurities and uncertainties and a plethora of new experiences that would inherently change the way I viewed rehabilitation and life. My most poignant memories of these places will be forever etched in my mind. The move from ICU to high dependency came with its associated decrease in staff ratio that produced such high feelings of anxiety and was characterized by a preponderance of what ifs. What if they don’t notice an important change? How can they watch him closely enough when there is not one nurse devoted to watching just him? What if he dies because they aren’t paying attention? What if he just gives up? What if they have given up on him? The uncertainty and anxiety associated with the what ifs was paralleled by the deep sadness and despair felt when you see a family member placed in restraints or when you see him propped up in a chair despite the fact that he can’t keep himself upright or when you witness him gagging as the nasogastric tube is being reinserted or when you watch him trying to speak with a tracheostomy and you can’t make out what he is trying to tell you. The brain injury unit has locked doors that accost any sense of dignity or autonomy. There is the long process of relearning the mundane daily tasks of eating, walking, and going to


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the toilet. There is overwhelming sadness and despair for others who sit for 24 hours a day with no visits from family or friends and the way in which they never seemed to improve as much as those who were surrounded with support. There is constant mulling over what will happen to them if nobody comes for them. Even the smallest task or goal becomes not only a goal for your family member but a goal for the whole family. Indeed, I remember clearly the weeks as my brother was emerging from posttraumatic amnesia (PTA). His occupational therapist had asked him to remember three items and to have emerged from PTA, he had to have day-to-day recollection of these three items. I don’t know how many days he remembered two of the three. I don’t know how many days we sat there asking him if he remembered what the third thing was, as if remembering that one item was a pot of gold at the end of the tunnel. This tiny rehabilitation goal had become the whole point around which each day revolved, and we all had so much emotion invested in its achievement. The day that he remembered that third item, anyone would think we had just won the lottery, the relief and sheer excitement was incredible. What I have discussed so far are but a few of the most prominent memories of this journey. The diary that I have kept of this time is some 150 pages long and may, one day in the future, provide the basis for sharing this experience in its entirety. For the moment, suffice to say this was an extremely difficult and trying time, filled with tears, anger, frustration, anxiety, sadness, and loss. It heralded the fact that my rose-colored glasses existed no more, I was not the all-knowing professional, I was just a little boat in a big sea, drifting aimlessly in the vast expanse of this thing we call rehabilitation. My journey through these contexts is also filtered through my feelings of shock, disappointment, and sometimes disbelief at the way in which people are managed by the rehabilitation professionals who are charged with their care and who must, by virtue of their role, care for not only the injured person but also their significant others. In my mind, as I entered this experience, I thought all rehabilitation professionals held the same values as me, namely, respect for the individual, care, compassion, and an understanding of the whole person and their environment. I did see many instances where this was the case. But I also witnessed many incidents that seriously challenged my perceptions of healthcare professionals and culminated in the loss of my rosecolored glasses. For instance, I saw a lack of understanding of age-appropriate interactions when a staff member sent a 16-year-old boy to his room because he was being behaviorally disruptive. I saw a lack of care and compassion when an evidently distressed mother was not offered comfort because “she always does this.” I saw clients refused psychosocial support and counseling because they “won’t remember it anyway.” I saw friends turned away if they couldn’t make it during visiting hours. I saw friends excluded from therapy sessions where family was allowed. I saw friends offered no explanation or support in situations where they were clearly confused and worried. Therefore I saw friends who didn’t come back. There were times where my own feelings toward my brother’s friends were overrun by anger and hurt, and these remain clear memories, signaled by the intensity of the emotion that accompanied them. I recall the female friend who spent so much time in the early days just talking and touching my

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brother, trying desperately to uncover memories and awareness. I remember when she stopped coming to see him after realizing that recovery in many respects followed its own timeline. I remember the time, while my brother was hospitalized, when the friends he shared a house with prior to his injury decided to move out, leaving the house in a state of disrepair and mess, and simultaneously leaving my brother with the massive bond debt, which my parents covered. I remember the times following his discharge from the hospital when his friends excluded him from involvement in recreational activities because they didn’t think they would be able to help him if he got into trouble. I remember the raw emotional pain that was obvious each time he was disappointed, forgotten, or deliberately excluded. In these early days, my sisterly protectiveness was fierce, and I blamed those friends. Why couldn’t they just support him? Why was their friendship no longer a part of their everyday lives? How could they go on with their lives while he struggled to regain some semblance of normality to his own? The immediacy of this situation left me with an overwhelming sense of the unfairness of life, as if he hadn’t been through enough already.

FRIENDSHIPS IN HINDSIGHT Hindsight is a wonderful thing, however, and it was not until many years later that reflection enabled me to let go of these feelings of anger. In more recent years, since commencing my doctoral research, curiosity and contemplation has replaced anger and frustration. What has emerged is an awareness of the fact that friendships are a process unto themselves. Despite what we may see as a family member or as a rehabilitation professional, friendships follow an independent process, a process of maintenance or dissolution in the wake of trauma and injury. Yet nobody truly understands this process, and I would even go as far to say that nobody has really recognized that this process even exists. It is only at the times that this friendship process intersects with the family process or the rehabilitation process that we become aware of it. Yet these intersections are so brief that we fail to understand that friendship is a process rather than a collection of static moments in time. As family members or rehabilitation professionals, we are outsiders in this process, mere spectators. Sometimes, we may throw rubbish on the field that interrupts the game, but in the end, the outcome of the game rests with the major players, namely, the injured person and their friends. Their experiences of injury and friendship are their own, independent of the family experience and maybe at times independent of each other. What are the motives for their friendship behaviors? How do they feel about friendship? What do they think about friendship? What level of reciprocity exists in maintaining that friendship? What level of awareness do they have of their friendship and the direction that it follows? What is the rehabilitation experience for the friends, as outsiders, as people who stand on the sidelines but don’t receive any cues or props to assist them? Would these friendships have stood the test of time without the injury, or did we just attribute a natural course of events to the injury? The simple answer is we don’t


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know, and there is probably no rehabilitation professional or family member who could come close to answering these questions given our current state of knowledge. These are questions for now to be asked of the major players. The importance of friendships has not been recognized, not by the rehabilitation professionals, not by the families, and even in some instances not by the injured individual themselves until it was too late. It was with growing realization of this fact that I returned to work.

A CAREER RETURNED My return to work following my brother’s injury and the birth of my first child took the form of some casual research work with a university and from this emerged a decision to do my master’s degree by research, which then developed into a doctoral thesis. From this emerged a position as Research and Development Officer with a community rehabilitation service for people with spinal cord injury. My professional career and my life path as I see it has now emerged, not as a clinician but as a researcher. At last, I felt I had found what I had been looking for. Indeed, it became clear to me at this point in time that I could no longer fulfill the role of the clinician—my personal hat covered too much of my head. My desire to exist in the real world of the clinical setting, rather than in academia, was realized within this position. I wasn’t sitting in the ivory tower of academia but in the real world, with real people who had real injuries, real families, and real losses. So I witnessed on a daily basis, whether through personal contact or involvement with a clinical team, the struggle that injured people and families had trying to negotiate the rehabilitation system. Sometimes that system worked extremely well, usually for certain types of people, those whose physical impairment itself represented the major personal aspect of their injury. In other instances, the system failed dismally, for those who didn’t fit the norm, for those whose psychological or social needs were of overarching relevance, for those whose cultural backgrounds were different, for those who experienced cognitive impairments as a result of their injury, and for those who were just that little bit rebellious. Research offered me the opportunity to see these personal losses and triumphs, sometimes vicariously and other times personally. It allowed me the space to examine the systems in rehabilitation without being one of the key stakeholders in the process. It allowed me objectivity while still allowing compassion. And it allowed me to realize that our system often fails to provide the support that people need. To develop research agendas that would not only give me publications as a professional but would provide direction for practice, to make real changes that would enhance the lives of people who have been injured and their families. I had found my calling and to this day believe that this is where I can make the largest difference. Of course, the life stories I see and hear in spinal cord injury rehabilitation offer me a different perspective to those in brain injury rehabilitation, each with their positives and negatives, each with their own idiosyncrasies and philosophies. For people with spinal cord injury, there is an overwhelming focus on the physical, often leaving large gaps in providing adequate

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psychosocial support. On the other hand, in spinal cord injury rehabilitation, there was greater autonomy provided to the injured person because at least they had insight, something that is often a blight against the reputation of and struggle for autonomy among people with brain injury. For people with brain injury, the psychosocial was often foremost but in many instances attributed merely to the nature of the injury itself and therefore perceived as untreatable. Each rehabilitation system had parallel challenges. Both struggled against the dominance of the medical model, the focus on the individual, the failure to consider the whole person and the entirety of their social circumstances, the inadequacy of the system to facilitate a return to valued social and vocational roles, and in both an overwhelming failure of the system to recognize and value the role of friends. In spinal cord injury rehabilitation, I have experienced this within my professional role alone. In brain injury rehabilitation, I had experienced this on a personal level but would later experience this as a researcher when I took a part-time position in a research and development role with a community rehabilitation service for people with acquired brain injury. As I write this chapter, I continue to hold both these research roles in spinal cord injury and acquired brain injury rehabilitation. I remain entrenched within the rehabilitation setting, while never truly removing the personal experience that set me on this life path. Therefore I write from a position of inclusion in the clinical rehabilitation arena. Writing is of critical relevance to me, both as a professional and as a person because it is through this medium that I can share these insights. It is true that the roads that we follow lead us in unique directions and I am sure that had it not been for my brother’s injury, I would not be where I am today. Does my personal position and history impact how I see my work and how I write? It surely does, and I would be disappointed if it didn’t. Yet it is a point from which I may be and have been criticized or questioned, particularly in the professional arena. I have been asked whether I could maintain objectivity, whether I show too much empathy for clients, whether I act like an advocate rather than a professional. If these are my greatest sins as a professional, then I gladly accept them, because I don’t ever want to lose the ability to hear the stories of real people and fight to improve the way in which we help them return to their lives. I don’t ever want to be detached from their realities and I don’t ever want to hear myself calling a person “the T4 paraplegic.” This person is not defined by their injury but by who they are as a person. Through my writing, I hope that I can do justice to the experiences of people who have spinal cord injuries or acquired brain injuries as well as doing justice to the experiences of their friends, the forgotten majority. The truth is I don’t ever want to wear those rose-colored glasses again—reality becomes too blurry.

REFERENCES Answers.com. (2007). Dictionary: Rose-colored. Retrieved February 18, 2007, from www.answers.com/topic/rose-colored. Lezak, M. D. (1988). Brain damage is a family affair. Journal of Clinical and Experimental Neuropsychology, 10(1), 111–123.

CHAPTER 7

Australian Indigenous Health and the SIPES Model of Well-Being: The Legacy of Lauraine Barlow Leda Barnett and Dianne Barnett

The dominant Western model of health has continued to marginalize Aboriginal people by impressing Western methods of health education and care, and failing to acknowledge cultural methods of learning and healing. (Davis et al., 2004, p. 108)

T

he Western medical system is struggling to address the health needs of Australia’s Indigenous*, 1 people, particularly those with disabilities or chronic conditions. One reason for this mismatch is the fact that aspects of Indigenous well-being are unable to be incorporated into health interventions that are developed from the dominant Western medical health model. This chapter discusses a model of well-being that incorporates social, intellectual, physical, emotional, and spiritual (SIPES) aspects of health. This model of well-being was derived from a local Murri artist’s painting and has emerged in the health literature. The SIPES model of well-being is presented as a foundation from which Indigenous communities can assess well-being and initiate, develop, and deliver culturally appropriate community-based health interventions. Many of Australia’s Indigenous people attribute their ill health to the inability of the medical system to accommodate their needs (Barnett, 2006). Maher (1999) recognized that Aboriginal people have resisted the dominant beliefs and practices that form the basis of the predominant Western health care model. This resistance is based on a history of predominantly negative experiences of * In this chapter the word “Indigenous” will be spelt with a capital “I”.—Our use of “Indigenous” in this way is motivated by the need to respect the cultural reference inherent in the capitalised form, rather than subscribe to an act of precedence in accordance with “common” usage.

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Indigenous people with the medical model, resulting from the inherent differences between Western health frameworks and Indigenous understandings of health (Kendall, Barnett, & Hunter, 2006). Discord continues when medical services are provided that do not consider the cultural contexts of health issues, for example, some traditional Indigenous health beliefs attribute illness to social and or spiritual dysfunction (Barnett, 2006; Honeyman & Jacobs, 1996). Indigenous systems of health beliefs can also incorporate religion, the interconnectedness with the land, and various obligatory requirements in relation to kin, which for many Aboriginal people is dictated by culture, often taking higher priority than their own health (i.e., social responsibilities are given the highest priority in many communities) (Maher, 1999). A considerable amount of literature positions holistic health as an alternative to the predominant biomedical model of Western disease and illness. Central to this contrast is the belief that the biomedical model devalues many aspects of health, other than the physical, a stark contrast to the foundational beliefs of holistic health and the understanding of health from an Indigenous Australian perspective (Lutschini, 2005). A holistic concept of health parallels the Indigenous understanding in that they are multidimensional, incorporating “a degree of depth and balance among such diverse elements as physical health, emotional health, intellectual health, social health and spiritual health” (Hawks, 2004, p. 11). The various aspects coexist to form a state of well-being or a level of optimum health in an individual’s life (Viner & Macfarlane, 2005). The balance among the various aspects of health determines an individual’s holistic well-being. The purpose of this chapter is to discuss the importance of viewing Australian Indigenous health from a holistic framework. As holistic beings, we cannot separate our emotions, bodily sensations, thoughts, and spiritual experiences into discrete compartments. For this reason, a model of health that is culturally appropriate must recognize and encapsulate the Indigenous worldview as reflected by the complexities of Indigenous understandings of health and its influence within the cultural context. As depicted in the original painting by Murri2 artist Lauraine Barlow,3 the SIPES model of well-being provides a holistic model that can illustrate an individual’s health more clearly. Many health practitioners are required to utilize a framework for the assessment of clients and communities. The SIPES conceptual framework prepares the health practitioner to assess well-being by following a comprehensive, holistic framework for assessment through the association of the fingers of the hand as illustrated in Barlow’s painting.

AN INDIGENOUS MODEL OF HEALTH The National Aboriginal Community Controlled Health Organisation (2003) defined Aboriginal health as encompassing “mental health and physical, cultural and spiritual health. Land is central to well-being. Crucially, it must be understood that when the harmony of these interrelations is disrupted, Aboriginal ill health will persist” (p. 5). The National Aboriginal and Torres Strait Islander Health Council (2003, p. 2) noted that the improvement

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of Indigenous health status “must include attention to physical, spiritual, cultural, emotional and social well-being, community capacity and governance.” Despite a lack of consensus regarding the aspects of holistic well-being, conceptualizing health within a model that incorporates social, emotional, and spiritual aspects that engage other entities (including family, the community, and the environment) as active participants in the construction and maintenance of health is critical (Barnett, 2006). Many health services are inappropriate for the needs of Australia’s Indigenous communities as they unwittingly disregard the communities ideas of health (Stephens, Nettleton, Porter, Willis, & Clark, 2005). Lutschini (2005) explained that the complex interrelated constructs that facilitate Aboriginal understandings of health, as evidenced in language, cannot be easily translated (if at all) into Western languages. For example, the Ngarigman of the Northern Territory use the word punyu as a concept of well-being that “encompasses person and country, and is associated with being strong, happy, knowledgeable, socially responsible (to ‘take a care’), beautiful, clean and safe—both in the sense of being within the law/lore4 and in the sense of being cared for” (Atkinson, Graham, Pettit & Lewis, 2002, p. 286). Here wellbeing is dependent on the quality of an individual’s relationships, which are based on mutual care. Punyu demonstrates that health concepts are developed within the community in which they are used, meaning they may have limited relevance to other Indigenous communities. For this reason, interventions developed on the basis of localized Indigenous contexts have less generalizability, providing an explanation for why such constructs receive little attention in the wider health community (Lutschini, 2005).

THE SIPES MODEL OF WELL-BEING In 2006, a project was conducted in relation to the management of chronic disease in Murri communities (Kendall et al., 2006). The Indigenous community researcher in this project, Lauraine Barlow, reflected her thoughts about the project in a painting titled “Journeys of Healing” (see Figure 7.1). Barlow used art and her life story as media by which to portray her understanding of health within the cultural context with which she identified. Through this process, she effectively linked the past, present, and future across the interrelated aspects of well-being and embedded these factors within her artistic identity and culture. As shown in Figure 7.1, Barlow’s understanding of well-being is based on five aspects of health (i.e., social, intellectual, physical, emotional, spiritual), each creating an equal section of the whole yet inextricably reliant on each other. Barlow wrote on her painting: There are five segments to life, each with a meaning about health: Stars = spiritual health Tree = physical health Tears = emotional health Owl = intellectual health Queen Green Ant = social health. These five aspects are essential parts of a healthy existence. The hands signify our need to tell our story and the four figures represent all different people of different sexes. The circles represent the various stories we share and the places we have been. We are all telling the same journey of healing, if people would just stop and listen.

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Figure 7.1. “Journeys of Healing,” by Lauraine Barlow. Australian Indigenous Health and the SIPES Model of Well-being, Leda Barnett & Dianne Barnett. [Lauraine Barlow]

Barlow’s symbolism demonstrates a complex and intimate understanding of the environment and its inhabitants. Her artwork provides an effective, efficient, and comprehensive overview of a Murri woman’s understanding of health in a familiar, appropriate and concise medium. The painting has proven to be an effective medium for communicating a health message, as it facilitates transmission of culture, instills cultural pride, and incorporates Murri understandings of learning, healing, living, and other cultural features (Davis et al., 2004). The diversity of Indigenous culture denotes an expansive conceptual understanding of well-being. The SIPES model provides a foundation on which to construct a health assessment and customize appropriate health interventions that can respond to this model of well-being. “Journeys of Healing” provides a degree of validation for the appropriateness of health practices that incorporate these five aspects of well-being. By extrapolating the illustration of the hands that are central to the painting and associating each of the five aspects of holistic health to the fingers of the left hand, health professionals are well placed to apply an appropriate conceptual framework for assessment of Indigenous holistic health.

Social Health as Represented by the Left Thumb Social support has a significant role in the implementation of health interventions for various types of cancer, cardiovascular disease, immune function, and women’s health (Hawks, 2004). Studies investigating the effect of the social environment on health have identified that the quality of relationships, sense of belonging, mutual obligations to social groups, satisfaction gleaned from societal roles, and feelings of love and acceptance as influential factors


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(Bloom, 1990; Hawks, 2004; House, Landis, & Umberson, 1988). The construction and augmentation of an individual’s sense of self is facilitated by his or her interactions with others and through the social meaning attributed to an individual’s appearance and behavior (Chaney, 2004; Kelly & Field, 1996; Wilson, 2003). Inherent in the social presentation of self are the physical characteristics embodied in gender, age, and ethnicity. These characteristics influence the perception of an individual by others, drawing in the complications of stereotypes and other assumptions that underpin previously formed and socially constructed understandings and expectations (Chaney, 2004). The social identity of a person, as defined by their allegiance to various social groups, influences how one interacts with others. In the case where illness affects one’s body, one’s self-concept (as dictated by the activities one can participate in) influences that individual’s view of him- or herself. Together with other people’s perceptions, either an individual’s self-concept is reconstructed or a new identity is confirmed (Kelly & Field, 1996). The quality of environmental interactions and their social meaningfulness facilitates further understanding of an individual’s social capacity (Kelly & Field, 1996). Consequently, the efficiency with which an individual interacts with the environment; discrepancies between expectations, obligations, and abilities and the application of stereotypes; and discrimination can all impact an individual’s well-being. In a recent study conducted by Kendall et al. (2006), the importance of this social aspect of health to Indigenous people was evident through the conversation about family ties and kinship structures that preceded every interview about health (Barnett, 2006). For many Indigenous people, the lack of culturally competent practices within interpersonal health interactions with nonIndigenous people (e.g., going to a nonIndigenous doctor) is particularly problematic. Discussions about what is needed to improve Indigenous health often focus on the need for Indigenous staff as the first point of contact in health professional positions at medical centers, clinics, or surgeries. This need reflects the significance of the social aspect of well-being (i.e., language, interaction, interpersonal skills) and its role in physical health (Barnett, 2006). The effect of dysfunctionality in the social dimension of health on a population level is evidenced in the “Bringing Them Home” report (Human Rights and Equal Opportunity Commission, 1997). Alienation from family and culture has been thought to underlie many behavioral and social issues relating to ill health and poor well-being, for example, the presence of domestic violence, assaults, poverty, unemployment, and criminal activities in some Indigenous communities (Brown, 2001; Jackson & Ward, 1999). It is an individual’s history and life connectedness that brings him or her to the current point of life. Social connectedness can be seen as the glue that holds people in place in a community and provides a sense of identity. Family connectedness, involvement in community groups, and physical ability to move about are part of the threads of social assessments. These factors impact individuals’ richness of present living and their ability to either maintain or improve their whole self. It is important that health professionals consider the social construct of the Indigenous client’s life prior to any further assessment, as other aspects of health could be associated with this social situation.

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The impact of the social context of health on individuals requires the health professional to consider his or her approach to the client. The health professional’s attitude, verbal and nonverbal communication, and how the client may interpret the approach all affect the responses received by health assessments. Aspects of oral communication, such as the tone of voice used, whether the questioning is open or closed, and the cultural appropriateness of the interaction, should also be considered. The cultural appropriateness of any interaction will be affected by the client’s gender and that of the health professional, the presence of family or other persons, and various privacy issues. Taking the time to connect with the client socially can be as simple as smiling, making eye contact when appropriate, and inviting a response to a simple question such as, “How can I help you today?” Assessment of the client’s social life will provide an understanding of his or her lifestyle, support systems, and whole of life infrastructure that affects well-being. Orientation of language and connecting through family or social networks is important to establish a base of respect and openness to gather the information needed for a comprehensive assessment. The need for interpreters or the presence of cultural support persons should also be considered and practiced where necessary, prior to further assessment being undertaken. It is often not appropriate to ask direct or multiple questions that may leave the client feeling he or she has been interrogated. Rather, asking open questions that allow clients to provide information about themselves and how they fit into their community can include “Tell me about your community and where you have come from,” “Tell me about yourself and how your family came to this place,” “Tell me how you are feeling,” and “How are your feelings affecting your family?” Reflecting the feeling and content of the responses to such questioning should elicit further interaction and provide an initial baseline of the social infrastructure of support that surrounds the client.

Intellectual and Mental Health represented by the Left Index Finger A person’s thought patterns and cognition significantly impact his or her ability to understand, plan, and process information to interact with others (Sharifian, 2001). This skill relates to not only intelligence and cognitive processes but also how an individual makes sense of the world (Sharifian, 2001). For example, people who place a high value on intellectual ability in one culture (e.g., the ability to complete tertiary studies or pursue a career as a lawyer) may not value the intelligence required to understand seasons or patterns of nature in Indigenous culture where this skill impacts on the ability to hunt and fish for survival in a natural and changing environment. The consequences of not providing formal education for children are well recognized. The effect on the individual, the immediate and extended family, and the wider community is evident in Indigenous communities (Storry, 2006). In some Aboriginal communities, many of the current generation of parents do not have basic English literacy and numeracy skills, meaning


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the next generation is being raised in low-literacy environments and are illprepared for an education in the mainstream school system (Storry, 2006). The need for a community approach to address low educational achievements for Indigenous people living within predominantly English or Western societies is clear and is the basis of several national initiatives at present. However, the relevance of English-based education programs that lack any culturally relevant curriculum (i.e., no teaching of traditional language, Aboriginal history, or cultural traditions) is questionable. Health in Indigenous communities requires access to an education system that facilitates Indigenous ways of knowing.5 For many Indigenous people, intellectual health involves knowledge of traditional cultural influences. Thus, good intellectual health (in accordance with what is deemed culturally important) would include learning and practicing cultural ceremonies, traditional language, traditional songs, and cultural beliefs that are predominantly learned from elders (Colomeda & Wenzel, 2000). This learning is of great value within Indigenous culture and is a source of continuity with the past, being knowledge that has been handed down from generation to generation. Intellectual health necessitate not only Indigenous knowledge and ways of knowing but also the process of communicating knowledge. Education within Indigenous culture requires an approach suited to its traditional context, for example, storytelling and participation of kin is critical to a successful education experience for Indigenous people (Colomeda & Wenzel, 2000). Where intellect has been described as a person’s ability to reason, solve problems, understand, and live safely in the world (Sharifian, 2001), mental well-being can be described as psychological functioning, the ability to undertake an activity normal to a human being, and fulfill the social role that is normal for the individual. When assessing the intellectual and mental well-being of an Indigenous person, it is appropriate to consider that the nonIndigenous health professional may be viewed with hostility and could represent part of the colonizing history of white settlement. Thus, simply interacting with nonIndigenous health professionals may exacerbate mental ill health. Mental illness within a cultural group is influenced by what is considered to be normal, acceptable behaviors or abnormal within that group (Davis, 2003). The norms of broader society may be irrelevant. Understanding of mental disorders in Indigenous people is generally poor, although one study has estimated the prevalence to be between 35 and 54 percent (Clayer & Divarakan-Brown, 1991). There is recognition of mental illness in Indigenous communities through the use of language such as Womba to describe abnormal mental states (Davis, 2003). Whereas Western medicine views mental illness as a problem within an individual, for the Indigenous community these abnormal mental states are seen as a community issue and can often be considered as spiritual issues that require spiritual intervention (Davis, 2003). Traditional healers, therefore, continue to have a place in the intervention and management of mental health problems for many Indigenous people. Risk assessments of mental health for Indigenous clients should occur with culturally appropriate tools and understanding (Couzos & Murray, 2003).

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Consideration should always be given to the losses experienced by Indigenous people through colonization and how this has had an ongoing effect on individual and community well-being. It is estimated that up to 1 in 10 Indigenous children were forcibly removed from their family between 1910 and 1970 and that most Indigenous families have been directly or indirectly affected by this process (Couzos & Murray, 2003). The loss of land and family connections caused by this upheaval has had an impact on Aboriginal identity, and the widespread cultural anger can be seen as a response to these events. Asking questions of Indigenous clients and their families that have no relevance to community life may elicit misleading responses, resulting in incorrect evaluations, misdiagnosis, and inappropriate management plans. It is therefore important to consult with and involve the family of the client in any mental health assessment. If there are symptoms or signs of mental illness, these should be explored within the context of the culture of origin as they may be seen as acceptable behavior within that culture or the local community. For example, hallucinations may not necessarily be a psychotic phenomenon in some communities, as it may be considered acceptable or normal for a person to receive messages or hear voices following a death or traumatic incident. It is therefore essential that cultural differences are considered by the health professional, in all instances where a mental health problem may be present (Davis, 2003).

Physical Health Represented by the Middle Finger of the Left Hand The physical aspect of the SIPES model refers to the functioning of the physical components of the body, the absence of physical ailments and disease, and other structural indicators of health, such as blood pressure and bone density (Saylor, 2004). The physical dimension of health is the predominant feature of the dominant medical models (i.e., Western approaches to health that address the affects of biological factors in relation to illness and physical health). Physical health is easily defined, operationalized, and measured across disciplines, making it a legitimate goal for health interventions (Hawks, 2004). Physical dimension of health is identified as a wellestablished component of quality of life (Miller & Thoresen, 2003). However, its influence on other aspects of well-being and its interrelatedness with the other dimensions of health are less well understood (e.g., as physical health decreases, so do other health dimensions, such as increasing inability to engage in social activities). Natural changes of physicality, as human bodies mature, also impinges on social capacities in a variety of ways (Kelly & Field, 1996). Often, the physical manifestations of an illness precede changes in other dimensions of health, for example, relationship dynamics change when intimate physical care needs transform the roles of family members. Additionally, the symbolic meaning that is inherent in societal roles performed prior to physical ill health can be challenged and cause those involved emotional distress. Thus, identity is reconstructed and further limitations are imposed on socially determined actions (Kelly & Field, 1996).


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The physical aspect of well-being includes engagement in daily exercise, eating a diet high in fresh food and vegetables, and maintaining a posture that affects how a body looks and reacts to environmental demands (Berry & Sherman Hansen, 2000). In this regard, health benefits have been attributed to traditional Indigenous lifestyles (McLaughlin, 2006), such as the physical benefits of acquiring bush products (i.e., exercise) and its nutritional content incorporates social and relational dynamics that render each participant an active player in the daily functioning of the community (e.g., people hunting together, infants fed the blood of kangaroos hunted by relatives, and women catching and cooking goannas) (Lagan, 2006). Many of these activities are actively sought by people living in Western urban communities, but for many others, these activities have been completely lost and replaced by unhealthy life habits. Health professionals observe and make health assessments on the basis of the physical appearance of their clients. This assessment can include, among other things, the person’s age, gender, sexuality, stature, physical characteristics, and general appearance. An individual’s physical appearance can readily identify some aspects of well-being and identity. Judging of one’s character and nature through the features of the face is called physiognomy (Lindhauer, 1986). The face reflects tiredness, fatigue, joy, pleasure, happiness, stress, pain, fear, and other emotions. The face can also reflect personality and mood as well as mental illness. Additionally, signs of disease can be reflected in the individual’s facial characteristics, for example the skull enlargement of Paget’s disease, the mask like features of Parkinson’s disease, and the flat profile and crowded features of Down syndrome (Murtagh, 2003). Other examples—the butterfly mask or rash of lupus —can also be readily seen on a person’s face, and so can the bluish tinge of the lips that can reflect cyanosis or oxygen deprivation that is associated with shock or heart failure (Murtagh, 2003). When assessing well-being, hair and skin can provide a picture of race and help define a cultural group as well as reflect personal hygiene standards and class. The skin can be touched to identify temperature, sores, lumps, and rashes along with hydration and edema that can be associated with heart failure or pregnancy-induced hypertension. Erect stature and muscle definition can provide information on the individual’s fitness, self-esteem, and body composition, and movement will show activity and obesity. This often rapid and immediate assessment of individuals provides significant information. Genetic makeup influences not only biological characteristics but also innate temperament, activity level, and intellectual potential and has also been related to susceptibility to specific diseases such as diabetes and heart disease (Murtagh, 2003). There is significant evidence that both Aboriginal and Torres Strait Islander peoples have a higher incidence of cancer and cardiovascular disease and that their life expectancy is 17 years lower than other Australians (Australian Bureau of Statistics, 2006b). There is evidence to suggest that Aboriginal adults encounter a higher rate of some infectious diseases, which include Haemophilus B and bacterial sexually transmittable infections (Australian Bureau of Statistics, 2005). Mortality rates for Indigenous infants are also higher than nonIndigenous infant mortality rates, and

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there is an increased prevalence of low birth weight babies with infectious illnesses (Menzies, McIntyre, & Beard, 2004; National Centre for HIV Epidemiology and Clinical Research, 2007). A thorough physical assessment that is repeated annually will identify early signs and symptoms of disease and allow for early intervention in relation to harmful behaviors that may affect well-being and longevity. Physical well-being is the basis for Western medical assessment and interventions. There is evidence that the medical model of health is not providing the necessary interventions that can bring about changes in physical health status and disease processes in Indigenous communities (Bailie, Robinson, Kondalsamy-Chennakesavan, Halpin, & Wang, 2006). Any approach to physical health improvement in Indigenous communities must include respect for emotional and spiritual well-being. Westernized health care systems are slow to learn from Indigenous people that the goal of well-being should be the maintenance of wellness, not the management of illness (van Holst Pellekaan, & Clague, 2005).

Emotional Health Represented by the Fourth (Ring) Finger of the Left Hand Emotions and emotional support significantly influence a person’s wellbeing (Butler, Koopman, Classen, & Spiegel, 1999). Negative emotions, if left unchecked, can influence self-esteem, relationships, physical health, and disease processes (Butler et al., 1999; Salovey, Detweiler, Steward, & Rothman, 2000). Emotional distress creates a susceptibility to physical illness by affecting the immune system. Importantly, lifestyle activities, such as smoking and the consumption of alcohol and high-fat foods, have been identified as mechanisms that relieve emotional distress, which lends credence to the widely held belief that physical ill health is a manifestation of emotional distress (Stewart-Brown, 1998). The relationship between emotional distress and poor health behaviors necessitates a focus on emotional well-being, emotional supports, and emotional distress to facilitate physical health (Butler et al., 1999; Salovey et al., 2000; Stewart-Brown, 1998). Emotions and feelings color life. The body experiences feelings and emotions through awareness of the lived experience. The human body responds to stressors by alerting the nervous system. The hypothalamus signals the adrenal glands to release adrenaline, cortisol, and hormones that raise blood pressure, raise respiratory and heart rate, dilate pupils, release stored glucose from the liver for energy, and produce sweat to cool the body. These physical reactions are the body’s stress response and clearly demonstrate the body’s ability to perform under pressure. The stress response, however, can cause significant health problems when it overreacts (Health and Emotional Wellness, 2004). Emotional health also incorporates the ability to control one’s reactions to the environment. For example, many Indigenous Australians experience strong emotions in relation to past injustices that include the removal of Indigenous children from their families (Human Rights and Equal Opportunity Commission, 1997). Such emotions have been associated with psychological


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issues such as anxiety, depression, and other serious mental illnesses (Brown, 2001). Allowing the expression of feelings such as the anger, sorrow, and shame associated with these situations allows for the development of emotional health by provoking detachment from past negative experiences and realignment with an Indigenous identity that facilitates a positive outlook to the ongoing process of healing (Brown, 2001). Financial income is found to positively correlate with health (i.e., poor health and low income correlates with low social status, whereas good health and higher income correlates with high social status) (Chaney, 2004). Indigenous Australia’s low social gradient “reflects the material disadvantage and the effects of insecurity, anxiety and lack of social integration” (Chaney, 2004, p. 1). The ongoing process of reconciliation, the quest for a government apology for past wrongs.6 and the pursuit of the return of stolen wages can be identified as not only attempts to address injustice but attempts to address the emotional trauma of the past to bring about healing (Hermeston, 2005). The prevalence of ill health in Australia’s Indigenous people is a product of the emotional distress they have experienced, which facilitates a susceptibility to physical illness, and also of the emotional factors that hinder an individual’s ability to proactively manage their health (Australian Bureau of Statistics, 2006a; Metherell, 2002; Stewart-Brown, 1998). Indigenous clients’ feelings are complex and intergenerational. Thus, health professionals need skills to elicit, clarify, and articulate the different elements of emotional well-being. Often multiple and sometimes unspeakable feelings will be experienced at once. Guilt, shame, depression, hurt, anger, fear, and anxiety are inextricably intertwined for Indigenous people. Cultures differ in the way emotions are expressed, and health professionals should consider that somatic symptoms of illness can be manifested in individuals as a result of psychological distress (Davis, 2003). Skills for assessing feelings include the ability to show respect, sensitivity, and empathy as well as the ability to listen and reflect back feeling messages. Health professionals can use “feeling” questions to encourage the experiencing of and sharing of feelings. By expressing, experiencing, and managing feelings, physical conditions can be positively self-managed (Nelson-Jones, 1992).

Spiritual Health Represented by the Small (Fifth) Finger of the Left Hand Human beings can be described as the combination of three elements, namely, body (physiological, our relationship with the world), soul (psychological, our relationship with others), and spirit (spirituality, our relationship with God) (Lea, 2004). The human spirit is that part of a person that connects to the supernatural whether for good (e.g., abundant and righteous living) or bad (e.g., occult). The spiritual side of life involves a consciousness of God, which may have different interpretations according to individual beliefs and religion. Each of the three elements interact with each other. A healthy and well-maintained body and psyche that is balanced and able to manage the impact of personal history and development will be well placed to address the spiritual side of life. Each person is born with a deep spiritual need that relates

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to security or a sense of being loved, self-worth or being valued, and significance or the sense of meaning or purpose in life. This spiritual need occupies a crucial part of culture and well-being for Indigenous people (McLellan & Khavarpour, 2004). The importance of spiritual well-being is reflected in health outcomes as diverse as recovery from addiction, teen sexual activity, depression, eating disorders, breast cancer, and long-term survival with AIDS (Hawks, 2004). To explain spiritual health, an understanding of the worldview is required. Good spiritual health requires strong commitment to a well-defined worldview that results in personal clarity, understanding of one’s purpose in life and one’s role in society. Through this worldview one subscribes to a value system and an ethical framework that enables fulfillment of a higher purpose. Aspects of the spiritual worldview encompass relationships with others, the form of a higher power or a larger reality, and a sense of personal worth (Hawks, 2004). One’s worldview encompasses all elements of culture, in fact, it is defined by the culture within which an individual lives (Tuhiwai Smith, 1999). Thus, the community helps create and form the worldview of its people (Colomeda & Wenzel, 2000). The extent to which spirituality features in a culture affects the spiritual health of its members (i.e., in magnitude and direction), resulting in differences across societal groups (Miller & Thoresen, 2003). For example, beliefs associated with miracles, visions, and ritualistic practices (e.g., baptism) have been accepted by many Christians and people of other religions (Brown, 2001). This is also the case for many Indigenous people, who have strong beliefs regarding the spiritual significance of certain practices, including hallucinations (in the form of ancestral visions or voices) and through a belief in the dreaming. These practices are accepted as commonplace (Brown, 2001). The spiritual aspect of well-being is arguably the most important measure of longevity and health for Australia’s Indigenous people (McClain, Rosenfeld, & Breitbart, 2003). The spiritual link with land provides identity, which lies at the core of spirituality and spiritual beliefs for many Indigenous people. Land is often positioned as central to health and well-being (Jackson & Ward, 1999), and the loss of connection with land is seen as a key factor in illness. Connectedness to a supreme being or spiritual beliefs can mean a connectedness to the land, through God and Christian understandings of the world (e.g., the coming of the light festival) and geographically specific beliefs found in the dreaming (National Aboriginal and Torres Strait Islander Health Council, 2003; Reeves Lawrence, 1998; Wilson, 2003). Whatever connectedness involves for individuals, it is incorporated into their reason for living and their view of health. Many people live in confusion of their identity and have no real meaning of life (Jackson & Ward, 1999). They can become absorbed with the natural life, collecting possessions and prioritizing involvement in superficial human relationships (Belk, 1988). Neither of these activities are wrong in themselves, but they can become the focus of one’s life and when this occurs the human spirit suffers. Seeking life’s meaning through temporal pleasures does not provide spiritual health for many Indigenous people. Instead, spiritual


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well-being relates to identity or the sense of who people are and the meaning they ascribe to life. People want to feel secure in their sense of spiritual identity. The spiritual self can be identified when a person is able to answer who they are in relation to other things of the world. The connectedness to land, for Aboriginal people, is evidence of their spirituality and identity (Jackson & Ward, 1999). The loss of that connectedness can result in feelings of rejection, low self-esteem, withdrawal and apathy, hostility, and compulsiveaddictive behavior. Thus, the importance of this dimension cannot be overlooked by health professionals.

CONCLUSION Although the World Health Organization has focused on a definition of health that encompasses more than the absence of disease, Western medicine’s focus on disease and disease processes will continue to limit the ability to address the well-being of the whole person (Saylor, 2004). For Australia’s Indigenous people, a model of well-being that incorporates broader influences, such as that depicted in Barlow’s (2005) painting, would enable identification of the broad influences that impact on well-being. The SIPES model of well-being acknowledges the importance of social, intellectual, physical, emotional, and spiritual aspects of health that occupy equal sections of the whole. Although presented in a compartmentalized fashion, through the linking of each aspect of health to a finger of the left hand, the artist has acknowledged that each aspect will interact with the others in a dynamic and complex way to create an overall status of wellbeing. Western models of health, on which many health interventions are developed, do not accommodate Indigenous ways of knowing (e.g., punyu health) (Atkinson et al., 2002). Indigenous people’s spiritual relationship with the land is central to well-being, the significance of which is not encapsulated in any Western health models. The relationship between health and the physical world is evident in the characters used to depict the different aspects of health in Barlow’s painting. The role of the physical world is rarely represented as a theme in health psychology literature (Wilson, 2003), other than in terms of environmental pollution or climate change, which is only just beginning to feature in contemporary research. Barlow’s art also emphasizes the collective nature of Indigenous way of life and how this interacts with health. Indigenous well-being dictates that support needs are addressed through kinship structures and collective processes (Brown, 2001). This approach contrasts with many Western health models, which fail to encompass the health of the community and environment with which an individual is affiliated (Stephens et al., 2005). It is the well-being of the community that influences the well-being of the individual in a intimate way, working from a whole-of-life perspective (Lutschini, 2005). The context of community and environment engender pluralistic solutions and holistic models to address health issues, enabling the use of allopathic and traditional medicines in addition to Western medical practitioners (Lagan, 2006; Lutschini, 2005).

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Finally, Barlow’s art asks us to hear the stories of Indigenous people. Indigenous health must be approached in the context of Australia’s history. Health disorders are firmly encapsulated within a milieu born from a violent history characterized by oppression, racism, and cultural genocide. This history is associated with widespread psychological distress, stress, trauma, and grief (Brown, 2001). According to Davis et al. (2004), understanding about the affects of colonization on spiritual and emotional suffering of Australia’s Indigenous people is growing. Health interventions that draw on such cultural awareness provide hope for improving Indigenous health. Cultural pride and self-sufficiency are important products of culturally appropriate service models (Davis et al., 2004), particularly if the interventions also provide for social intellectual, spiritual, and emotional healing in addition to physical health. The SIPES model of well-being, as depicted in Barlow’s painting “Journey’s of Healing,” could guide the development of a community-based health intervention that is entrenched in Indigenous culture and could facilitate strength, identity, and cultural pride. As a consequence of these improvements, such a model could inherently improve individual and community health (Bond, 2005). The development and incorporation of a model of health that encompasses caring for others within the community context and factors associated with geographic, environmental, and socioeconomic situations is important for Australia’s Indigenous populations (O’Donoghue, 1999). In a predominantly Western country such as Australia (if economic and attitudinal barriers could be addressed), a holistic model such as SIPES might address the gaps and inconsistencies that are evident in the current health system. Although more difficult to measure in terms of their efficacy, interventions that address the multiple pathways and multidimensional aspects of health have been underresearched (Atkinson et al., 2002). Multidimensional health interventions based on the SIPES model would be time- and energy-intensive for medical professionals and clients (Hawks, 2004; Lutschini, 2005). However, as Hawks (2004) noted, “an intensive, comprehensive approach that addresses all dimensions of health is capable of providing lasting, life-altering solutions that can be achieved in no other way” (p. 16). Although the biomedical model is attractive in that a drug prescription or short appointments are likely to be preferred by health professionals, Indigenous people need and demand respect for their right to shape understandings of health in an appropriate way, inform research methods, and influence health policies (Stephens et al., 2005). The SIPES model provides an avenue for developing this understanding by clearly illustrating differences between Western health models and Indigenous understandings of health.

NOTES We acknowledge the traditional custodians of the areas in which we have conducted research in the past. Lauraine Barlow provided the inspiration and impetus to write about the importance of holistic health for Indigenous people. Our work


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colleagues and friends, provided valuable feedback throughout the writing process. Our ongoing thanks, admiration, and gratitude to the participants of chronic disease management studies in which we have participated and whose stories continue to develop our understanding of health and our culture. We acknowledge Indigenous Health Workers with whom we have worked in rural and remote areas of Queensland and western Australia. Through their generosity of spirit and acceptance of us, we have grown in our understanding of Indigenous ways of life. 1. Aboriginal and Indigenous are used interchangeably, we acknowledge the Torres Strait Islander population, but the research referred to here focused on Aboriginal people. 2. The term Murri is used to refer to Aboriginal Australians who identify as Queenslanders. 3. A descendant of the Mandingalpa clan, Yidiny tribe, Kulla Kulla clan, and Lama Lama tribe in North Queensland, Lauraine Barlow has the Aboriginal name of Jana-n/Jigiddirri Jigiddirri (standout willy wagtail). Lauraine has lived with several chronic illnesses throughout her life, a situation that influenced her to relocate from her native home to a suburb near the capital city for easier access to appropriate medical treatment. 4. Lore is an important concept in Indigenous communities, where there are recognized and valued ways of behaving in society. 5. The “ways of knowing” concept refers to the cognitive orientation in which members of a cultural group view the world and understand their role within it. This cultural view is based on a subset of shared beliefs, assumptions, presuppositions, theories, and schemata (Turton, 1997). 6. The national government of Australia provided an apology to the Indigenous people in 2008 as one of the first tasks of the newly elected Labour Government under Prime Minister Kevin Rudd. This apology had been sought by Indigenous people for several decades, but had been refused by the prior government.

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Berry, D., & Sherman Hansen, J. (2000). Personality, nonverbal behavior, and interaction quality in female dyads. Personality and Social Psychology Bulletin, 26(3), 278–292. Bloom, J. (1990). The relationship of social support and health. Social Science and Medicine, 30(5), 635–637. Bond, C. (2005). A culture of ill health: Public health or aboriginality? Medical Journal of Australia, 183, 39–41. Brown, R. (2001). Australian Indigenous mental health. Australia and New Zealand Journal of Mental Health Nursing, 10, 33–41. Butler, L., Koopman, C., Classen, C., & Spiegel, D. (1999). Traumatic stress, life events, and emotional support in women with metastatic breast cancer: Cancerrelated Traumatic stress symptoms associated with past and current stressors. Health Psychology, 18(6), 555–560. Chaney, F. (2004). Engagement will do more than a treaty for Indigenous health. On Line Opinion. Retrieved May 23, 2007, from www.onlineopinion.com.au/ print.asp?article=2581. Clayer, J. R., & Divarakan-Brown, C. S. (1991). Mental health and behavioral problems in the urban Aboriginal population. Report of a study conducted by the Aboriginal Health Organization and the mental health evaluation centre of the South Australian Health Commission. Colomeda, L., & Wenzel, E. (2000). Medicine keepers: Issues in Indigenous health. Critical Public Health, 10(2), 243–256. Couzos, S., & Murray, R. (2003). Aboriginal primary health care; An evidence-based approach. Melbourne: Oxford University Press. Davis, B., McGrath, N., Knight, S., Davis, S., Norval, M., Freelander, G., et al. (2004). Aminina Nud Mulumuluna (“you gotta look after yourself”): Evaluation of the use of traditional art in health promotion for Aboriginal people in the Kimberley region of western Australia. Australian Psychologist, 39(2), 107–113. Davis, J. (2003). A manual of mental health care in general practice. Canberra: Commonwealth Department of Health and Ageing. Hawks, S. (2004). Spiritual wellness, holistic health, and the practice of health education. American Journal of Health Education, 35(1), 11–16. Health & Emotional Wellness. (2004). How does stress affect us? APA Help Centre. Retrieved from www.apahelpcentre.org/articles/article.php?id=11. Hermeston, W. (2005). Telling you our story: How apology and action relate to health and social problems in Aboriginal and Torres Strait Islander communities. Medical Journal of Australia, 183(9), 479–482. Honeyman, P., & Jacobs, E. (1996). Effects of culture on back pain in Australian Aboriginals. Spine, 21(7), 841–843. House, J., Landis, K., & Umberson, D. (1988). Social relationships and health. Science, 241, 540–545. Human Rights and Equal Opportunity Commission. (1997). Bringing them home: National inquiry into the separation of Aboriginal and Torres Strait Islander children from their families. Retrieved May 28, 2007, from www.hreoc.gov.au/ social_justice/bth/preliminary.html. Jackson, L., & Ward, J. (1999). Aboriginal health: Why is reconciliation necessary? Medical Journal of Australia, 170, 437–440. Retrieved April 12, 2007, from www.mja.com.au/public/issues/may3/jackson/jackson.html. Kelly, M., & Field, D. (1996). Medical sociology, chronic illness and the body. Sociology of Health and Illness, 18(2), 241–257. Kendall, E., Barnett, L. & Hunter, B. (2006). Indigenous self-management: Developing a culturally appropriate program. Meadowbrook: Griffith University and Arthritis Queensland.


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Lagan, B. (2006). Utopia—a place where Aborigines live long and prosper. Retrieved May 14, 2007, from www.eniar.org/news/Utopia.html. Lea, L. (2004). Body, mind, spirit and soul. Mental Health Today, September, 35–37. Lindhauer, M. (1986). Perceiving, imaging and preferring physiognomic stimuli. American Journal of Psychology, 99(2), 233–255. Lutschini, M. (2005). Engaging with holism in Australian Aboriginal health policy—a review. Australia and New Zealand Health Policy, 2. Maher, P. (1999). A review of traditional Aboriginal health beliefs. Australian Journal of Rural Health, 7, 229–236. McClain, C., Rosenfeld, B., & Breitbart, W. (2003). Effect of spiritual well being on end of life despair in terminally ill cancer patients. Lancet, 361(10), 1603–1607. McLaughlin, M. (2006). Good news on Indigenous health front. Television show. Australia: Australian Broadcasting Corporation. McLellan, V., & Kharvarpour, F. (2004). Culturally appropriate health promotion: its meaning and value in Aboriginal communities. Health Promotion Journal of Australia, 15(3). Menzies, R., McIntyre, P., & Beard, F. (2004). Vaccine preventable diseases and vaccination coverage in Aboriginal and Torres Strait Islander communities 1999 to 2002. Communicable Diseases Intelligence, 28(2), 127–159. Metherell, M. (2002). Indigenous health faces bleak future. Sydney Morning Herald, p. 6. Miller, W., & Thoresen, C. (2003). Spirituality, religion, and health. American Psychologist, 58(1), 24–35. Murtagh, J. (Ed.). (2003). General practice (3rd ed). Sydney: McGraw-Hill.National Aboriginal Community Controlled Health Organisation. (2003). Overview of the NACCHO Business Plan 2003-2006. Retrieved May 30, 2007, from http:// www.naccho.org.au/PolicyReports/Reports/NACCHOBusinessPlan.html. National Aboriginal and Torres Strait Islander Health Council. (2003). National strategic framework for Aboriginal and Torres Strait Islander health: Framework for action by governments. Retrieved May 30, 2007, from www.health.gov.au/ internet/wcms/publishing.nsf/Content/health-oatsih-pubs-healthstrategy. htm/$FILE/nsfatsihfinal.pdf. National Centre for HIV Epidemiology and Clinical Research. (2007). HIV/AIDS, viral hepatitis and sexually transmissible disease surveillance report 2007. AIHW catalogue no. PHE 92. Sydney: Author. Nelson-Jones, R. (1992). Lifeskills helping—a textbook of practical counselling and helping skills. Sydney: Holt Reinhart and Wilson. O’Donoghue, L. (1999). Towards a culture of improving Indigenous health in Australia. Australian Journal of Rural Health, 7, 64–69. Reeves, L. H. (1998). “Bethlehem” in Torres Strait: Music, dance and Christianity in Erub (Darnley Island). Australian Aboriginal Studies, 51. Retrieved May 31, 2007, from find.galegroup.com/itx/infomark.do?&contentSet=IAC-Documents &type=retrieve&tabID=T002&prodId=EAIM&docId=A54479677&source=g ale&srcprod=EAIM&userGroupName=griffith&version=1.0>. Salovey, P., Detweiler, J., Steward, W., & Rothman, A. (2000). Emotional states and physical health. American Psychologist, 55(1), 110–121. Saylor, C. (2004). The circle of health: A health definition model. Journal of Holistic Nursing, 22, 97–115. Sharifian, F. (2001). Schema-based processing in Australian speakers of Aboriginal English. Language and Intercultural Communication, 1(2), 120–134. Stephens, C., Nettleton, C., Porter, J., Willis, R., & Clark, S. (2005). Indigenous peoples’ health—why are they behind everyone, everywhere? Lancet, 366, 10–13.

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Stewart-Brown, S. (1998). Emotional wellbeing and its relation to health: Physical disease may well result from emotional distress. British Medical Journal, 317, 1608–1609. Storry, K. (2006). Tackling literacy in remote Aboriginal communities. Issue Analysis, 73. Retrieved May 31, 2006, from www.cis.org.au. Tuhiwai Smith, L. (1999). Decolonizing methodologies: Research and Indigenous peoples. Dunedin: University of Otago Press. Turton, C. (1997). Ways of knowing about health: An Aboriginal perspective. Advances in Nursing Science, 19(3), 28–36. van Holst Pellekaan, S., & Clague, L. (2005). Toward health and wellbeing for Indigenous Australians. Postgraduate Medical Journal, 81(10), 618–624. Viner, R., & Macfarlane, A. (2005). ABC of adolescence health promotion. British Medical Journal, 330, 527–529. Wilson, K. (2003). Therapeutic landscapes and First Nations peoples: An exploration of culture, health and place. Health & Place, 9, 83–93.

CHAPTER 8

“Surely Someone Can Support Me”: A Caregiver’s Perspective Tara Catalano and Debra Domalewski

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he fact that the family functions as a primary source of care and support for its dependent elderly members and that this role is often burdensome and stressful has been well documented for decades (Barber, 1988; Kasuya, Polgar-Bailey, & Takeuchi, 2000; Shanas, 1980). What is not well established is that the caregiving experience often demands skills that are associated with those held by health professionals. Case management, for instance, is recognized as a skillful method of integrating long-term care services into a seamless continuum of care across time and settings in a way that supports people with disabilities to make the most of their lives (Scharlach, Giunta, & Mill-Dick, 2001). Skills such as assessing needs, planning, client advocacy, monitoring, reassessing, and evaluating the outcomes are common in health professionals who engage in case management (Aliotta, Archibald, Brown, Chen, & Fox, 2000; Case Management Society of Australia, 2005). Many caregivers assume a role that is similar to that of a case manager, but do so without adequate guidance, support, or education. In 1999, as part of the International Year of the Older Persons, several debates occurred about the shortcomings of adult children taking responsibility for the welfare of elderly parents. These debates focused on questions about social equity between the generations, the parameters of self-reliance in old age (Millward, 1999), the burden of caregiving, the residualization of services, the increased contracting of service provision to charitable private agencies, and the increased reliance on the family for care (Jamrozik, 2001). Research has shown that one of every two caregivers suffers financial burden, and two out of three caregivers have experienced compromised health as a result of their role (Kasuya et al., 2000). Women continue to be the

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predominant caregivers, providing care in over 75 percent of cases (Kasuya, et al., 2000; Millward, 1999). This finding supports the “feminization of caregiving” and reinforces the societal expectation that women will provide care for their families (O’Connor, Wilson, & Setterlund, 2003). However, in the current complicated care environment, these primary caregivers are often assuming the role of case manager without the necessary infrastructure of professional and financial support. It is estimated that informal caregivers who support their ill or disabled family member(s) save the government and taxpayers $171.4 million (Australian dollars, A$; opportunity cost) and A$331.8 million (replacement cost) each year (Dewey et al., 2002). These caregivers are often juggling their supportive role in addition to a range of commitments (i.e., employment, raising a young family, etc.) that result in significant costs to themselves and their families. Although the economic burden is often debilitating, the cost of supporting family members also takes its toll emotionally and physically. The following story of Jennifer illustrates some of the issues faced by informal caregivers as they struggle to provide support to their dependent family member (subjective) while simultaneously fulfilling their usual roles and responsibilities. Jennifer’s story illustrates the qualitative aspects of caregiving within the framework of an informal caregiver’s experience as she struggles to provide support to her aging and frail elderly parent, while simultaneously fulfilling her usual roles and responsibilities. As we listen to her story, the unique reality of her caregiving experience becomes apparent, and we begin to gain an understanding of the oppression that is built into the structure of our social and health care systems. This subtle oppression reveals itself when we take the time to listen to the voices of caregivers (Howell & Ellis, 2005; Sorrell, 2003).

JENNIFER: CASE MANAGER OR DAUGHTER? Jennifer is in her late thirties. She works full-time and is raising her young daughter. She also provides support to her elderly father, Bill, who recently had a stroke. Bill now requires assistance with many of the daily tasks he once took for granted—showering, cooking, cleaning, and shopping. Bill, who lives alone, is no longer able to drive and cannot walk far on his own. Jennifer is uncertain if he will be able to continue living in his own home safely and independently. During the first six months following her father’s stroke, Jennifer’s major concerns were her “father’s safety versus his independence” and “how this change would influence her personal and family life.” This was a time of uncertainty for Jennifer, about what the future might hold for her father, herself, and her own immediate family. From the time of Bill’s stroke, Jennifer assumed an active role in supporting her father. Initially, the hospital recommended Bill be sent to a nursing home, but Jennifer advocated for independent living for her father. She was the only supporter of his primary goal to maintain his independence in his own home. She was instrumental in organizing the support that would enable her father to make a successful transition from hospital to home.

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When he was in hospital . . . professionals were saying, “you’ve got to get this organized and that organized and this organized.” So I went ahead and did try to get things organized. But it was a catch-22, “you can’t organize it until he goes home”; but that’s ridiculous because you have to have things in place before they go home. So I’m running around getting things organized and then at the very last minutes they said, “we would have done that for you.” But I wasn’t told that at the time. And I think that was deliberate in that . . . it will save state money if famil[ies] run around organizing things instead of staff.

Jennifer invested a considerable amount of time and energy in this process and continued to encounter many hurdles that impeded her ability to organize supports in a timely way for her father’s return home. “When dad first went home they said, ‘oh we’ve got a wheelchair ordered for you but you won’t get it for six weeks. And you’ll have a disability-parking permit but you won’t get that for so many months.’ ” In thinking about how she provided care for her father, Jennifer considered his “self-esteem, dignity, empowerment, adjusting to a different lifestyle and pace, understanding and appreciating his disability,” and so on. She believed that her efforts in the first few months were rewarded because he now “has increased his independence and [has taken on more] responsibility.” However, she explained that supporting her father, both practically and emotionally, was exhausting and difficult. Jennifer described the frustration she endured during those early months. She believed that she succeeded because she challenged the authorities despite being advised not to. Her assertive behavior led her to continue “speaking to managers of managers until I got answers about why things are so halted.” Her persistence ultimately translated into a positive outcome—“we got everything straight away, but I had to do that, which most people wouldn’t do.” Jennifer argued that if she had not “antagonized a few people” to get immediate results, her father “would have gone home and failed in the first week in being able to live at home and he would have felt within himself that he was a failure.” Although Bill successfully returned to his own home, the emotional, financial, and physical impact of Jennifer’s caregiving role was substantial. Jennifer found it necessary to cut back on her work hours. As a consequence of her reduced hours and the increased costs associated with caring for her father, she experienced a range of financial problems. Jennifer described her financial burden: There’s no financial assistance . . . for instance, the caregiver’s pension, you must be residing with the person over night in order to get that. . . . I think the criteria for that is not practical . . . for me to help him as much as I would like to, it requires me to be able to finance [my] petrol use and he doesn’t have this much money as a pensioner. If I was to go over there everyday it would be, say, $5 petrol per day, say $35 per week. Maybe to people who have an income of around $40,000 it probably doesn’t mean much. But anybody who’s on much lower [like myself] or lower socioeconomic situations, it does make a big difference. I think that if government agencies would like to encourage people to stay at home rather than go into institutions or nursing homes or retirement villages, then they have to look at ways that they can help people to do that.

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And if that means helping to support people who support those people with disabilities or aged, then I think that’s what they should do.

The emotional and social toll of Jennifer’s caregiving role extended to her young family. She described the “effect this experience [caring for my father] has had on my now two-year old daughter”: She was 18 months old when dad had his stroke. She spent most days at the hospital with me and as a result of this, [she] was often unwell from colds/bugs picked up at the hospital. . . . She had self-initiated toilet training just prior to dad going into hospital, this went by the wayside and we’re still waiting for her to return to this stage. . . . She has become increasingly frustrated with my attention being shared elsewhere and we have a lot of behavior problems to deal with now.

Clearly, the impact of Jennifer’s caregiving activities were pervasive and intrusive to her family and would continue to be ongoing while her father remained in his own home.

Ten Months Poststroke At approximately 10 months following Bill’s stroke, Jennifer continued to express a great deal of frustration about her caregiving role. However, her frustration mainly stemmed from the systemic issues that she and her father faced as they attempted to navigate the public health care system. Jennifer described how her father’s ongoing health concerns were exacerbated by the breakdown of communication between health professionals. Information regarding his health was not shared in a timely fashion between the hospital system and his general practitioner (GP), so following up on this information eventually became her responsibility. So it’s up to the patient who has had a couple of strokes and who is having difficulty getting around and coping with life in general and is being given the responsibility to do this. . . . Of course [dad] rang me all very worried . . . and when people put things onto him and say that it’s his responsibility to do it, I get very annoyed by that. So I rang the hospital and said that the GP wanted the information passed onto her and why hadn’t it been. . . . So all of these set processes that are supposedly in place [for information sharing in the health care system] are not working. It’s taken dad to get worried and then to ring me and then me to follow-up and make a couple of phone calls.

Advocating on behalf of her father within the health care system was time consuming and frustrating and required a great deal of vigilance on Jennifer’s part. That [advocating] takes a lot of effort, a lot of time and a lot of assertion. And at times just a simple lot of “front,” to be able to put up with the comments that come back at you. Some people who are in the medical profession think that people who are not in the medical profession don’t have any right to question their decisions or their judgments. And unless you have the gall to get up


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there and confront that [you get nowhere], [but] you’re lucky if it’s not seen as aggressive.

Jennifer felt responsible for keeping on top of the health care system to obtain answers and ensure continuity for her father. She shared her concern for the future, “I feel that [dad’s] health is declining . . . it worries me that he is on his own.” Her anxiety was exacerbated when the services (e.g., Meals on Wheels, Home Care) she had organized to support her father to live safely in his own home unexpectedly ceased over the Christmas holidays. I was disappointed . . . that over the Christmas break, all of those services stopped and dad didn’t tell me that. . . . He doesn’t want to put me out so he doesn’t tell me. But it puts me out more when he doesn’t tell me. He’s just making do himself . . . doing all the things that he doesn’t normally do like bathing himself.

Jennifer’s father had a mini-stroke on the evening of Boxing Day, when he was at home alone. Although Jennifer had taken precautions in case of emergencies, she learned that these techniques were fallible, “I had an [emergency call service] for him—[but] he wasn’t wearing his pendant [emergency call button]” at the time of his stroke. This event exacerbated her sense of dread—“in hindsight [it is terrible] to think about what has happened to your father . . . that he has actually had a stroke and he’s been lying there on his own, not being able to get anybody to help him.” The unpredictability and uncertainty associated with her father’s health condition impacted on Jennifer’s ability to decisively plan for the future. She described her concerns for the future and the considerations involved in providing more support to her father in the event that his health continued to deteriorate. I’m starting to feel that I’d be more comfortable, and it is selfish . . . that I want him here with me. . . . The possibility is there. But it’s something you really need to plan. Unless your house is equipped you’d have to move, which is what I’d have to do. That’s what I started looking into selling and buying a place that’s easily accessed, another bedroom, all that sort of thing. . . . Everything is just so unpredictable and up in the air . . . we just don’t know enough about anything to make any decisions.

Clearly, providing appropriate accommodation for her father would result in an upheaval for Jennifer’s entire family.

Fourteen Months Poststroke Approximately 14 months following Bill’s stroke, Jennifer’s role in supporting her father had changed substantially. She had relinquished a great deal of her responsibility for supporting Bill to her brother, who had recently returned to Brisbane. Taking a backseat in her father’s care was described as a bittersweet process. Jennifer was able to rechannel her energy into the neglected areas of her own life—“I’ve taken on more work commitments for myself” and, more important, “[my daughter] benefits a lot more from [the change] than anybody because she really was robbed of a lot of time and

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attention.” However, the emotional impact of withdrawing her support was an acute sense of worry and guilt. “I think guilt is a pretty natural response to feel when you withdraw because you feel that not only should you be doing it [supporting dad], but you want to be doing it, but you’re not.” Jennifer explained that the only reason she felt secure to withdraw her support was because it was family who were taking over from her. “I wouldn’t have withdrawn if there hadn’t have been family there anyway.” Despite Bill’s greater contact with other family members, Jennifer’s main concern for her father was his lack of social contact and dwindling support of friends. “I think that sometimes people are very well meaning and put a lot of effort in and then . . . find it exhausting . . . to maintain something that wasn’t normally what you would do all the time.” She noted that Bill’s friends provided important support early on that enabled him to make substantial improvements following the stroke, but the loss of these networks was damaging and was difficult for him to accept. “I think [his friends’ support] served a great purpose in that it’s helped dad be motivated and get as well as he has. There were great benefits in it but on the other hand, I think it’s a bit of a decline [now that is hard] for dad to adjust to. . . . I think he needs that contact.” Jennifer also relinquished her role as her father’s case worker within the health care system but for different reasons. She described ongoing concerns with the medical care her father received as a result of poor communication between health professionals, inadequate information management systems, and lack of appropriate discharge planning. She explained: We found out recently that dad was being serviced by two consultants at the hospital. . . . [As a result] he had two separate files with information that was important split across two files . . . basically all they were doing was over-servicing dad yet still managing to neglect him because information was still not being communicated to each doctor because there were two files. And in the end, information that was relevant and critical wasn’t, and still isn’t, getting back to his GP. . . . If you have two files, you don’t have any link-up between events and health.

Despite feeling that “I shouldn’t have to sort that out!” Jennifer raised the issue with the relevant health professionals. As a result of airing her grievances, she felt that her father was ultimately disadvantaged. She felt compelled to “just shut my mouth, and whatever happens, happens.” In the end, the public health doctor said, “I won’t see him anymore, I’m not going to over service him.” . . . So dad went back to see [the second doctor] . . . and he said, “don’t come back.” I feel like because I complained, that they have said, “well none of us are going to see you now.” . . . Basically, if you whinge [complain], you get nothing . . . all of a sudden he’s got no doctors and nobody wants to service him. So then it comes back to the loudmouth daughter. . . . So dad is the one disadvantaged in the end. Which makes me . . . want to step back even more.

Implicit in Jennifer’s statements was a sense of futility, helplessness, and frustration. “It seems like the only safe option for dad is if I don’t say anything. Maybe he’ll get better care if I don’t say anything at all.”


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Eighteen Months Poststroke At the time of the last interview (approximately 18 months following Bill’s stroke) Jennifer was resuming the caregiving role for her father. Her brother, who had recently taken on the supportive role, had moved away again. The imminent resumption of caregiving responsibilities resulted in Jennifer “feeling a bit down about the prospects of the near future for me and my little daughter.” The situation caused her to reflect about how her caregiving responsibilities impacted on her as an individual. Just on a “self ” note . . . it’s difficult at times to have your own time for yourself or your own goals. And I’m sort of privately a bit sad about that because there are things I want to do. My values . . . help me set my priorities [caring for my father] and I’m not about to reset my values. [But] I don’t know what to do about the disappointment I feel.

Jennifer’s comments concerning the personal sacrifice she had made to fulfill her caregiving role were indicative of the lived experience of juggling multiple caring responsibilities. She was quick to normalize the experience, acknowledging that this was probably a universal experience—“I think that happens to anybody who has to support other people for whatever reason.” Although Jennifer conceded that her caregiving role equated to a significant personal cost, she was adamant that social policy was in desperate need of attention to support her efforts. The resumption of caregiving responsibilities reignited Jennifer’s earlier arguments that “if I’m going to support people and make their life better, surely someone can support me to do that. Not support me—but what I’m trying to do.” She felt strongly that the current “all or nothing type policy . . . doesn’t fit in with what [governments] publicly state about supporting elderly people and disabled people to live in their home independently.” Jennifer raised cogent and valid criticisms of the rhetoric that surrounds the pressing public health issue of supporting the ageing population to live in their own homes. She had voiced her concerns to her local politicians— “Don’t you worry, I do that sort of thing all the time.” However, the process of contacting politicians was just one more task that drained her already depleted energy reserves for very little reward. One person can make a big difference, but you’ve only got so much time in your day, and throughout your own life there are so many issues that come up that are unfair or unequal in our society. You can only run with so many of them before you get exhausted. And they’re usually prioritized; whatever is causing the most stress for you and your family at the time.

She commented on the relative ignorance of some of the politicians she had contacted for support. Two [politicians] that I called [to discuss the caregiver’s pension] actually said to me, “of course you can get the caregiver’s pension.” . . . I said, “no you can’t,” and I gave them the criteria by which you have to fit to get that [you must live with the person]. They were astonished. So they don’t even know in

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the first place. And yet . . . here we are in Australia, probably one of the biggest issues is that we have an aging population and you want to look at social policy that supports people to stay at home. You want to look at family and community supporting each other—but we don’t even understand what are the structures around us and processes that stop us from being able to do that.

Jennifer experienced a sense of futility when her efforts of advocating for change of social policy and procedure were “to no avail.” The negative impact of this dismissal on her sense of self was evident in her comments. “[Politicians] say, “we’ll write it down and ring you back,” but they never did. . . . I can only make so many phone calls and annoy so many people without feeling like a dickhead myself at the end of the day.” Furthermore, she argued, “None of the politicians want to hear about that anyway. . . . They’re not really interested. It’s not the big issue of the day.” In the end, Jennifer was cautiously hopeful that her involvement in research would expose some of the issues faced by individuals, like her, who provided support so their ill or disabled family member could reside in their own homes. “I don’t know whether talking to you makes any difference. You make a note and somebody reads it—hopefully. But even if they do, whether they do anything about it is another matter.”

DISCUSSION Family caregiving still remains a central part of adult children’s responsibility to older parents. Effective government policy based on empirical and qualitative research is fundamental to the development of successful strategies to reduce the feelings of burden for caregivers of the aging population. It is imperative to acknowledge that caregivers often assume the role of a case manager and the system is not useful across all settings and professions (Hyde, 2004; Ozanne, 1990). This added responsibility and the consequent loss of a traditional role results in frustration, poor communication, and compromised outcomes for both the dependent elder and the caregiver. Case managers should provide clients with collaboration, continuity, consistency, and coordination of care across clinical settings (National Chronic Care Consortium, 2000). However, without the necessary support and education, “case managers” feel pressured, unsupported, and unable to adequately coordinate existing services. Another area of concern is caregiver financial burden. McClelland, Austin, and Schneck (1996) found when fiscal concerns displace client focus, outcomes for patients are compromised. Government policy that directs its long-term care to the communities is lacking infrastructure and funding to support the caregivers, their families, and invariably the impaired client. With the length of hospital stays getting shorter and more care being forced on families, the issue of burden is becoming a major concern, and therefore governments must access the psychological, social, economic, and health care costs of caregiving. They must ask the questions, are we reducing the health care costs for the presently ill patient, or are we, as a consequence, creating health problems for the caregivers (Roach, 2005)?


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As the 21st century advances, many changes are occurring within family dynamics that can further impact the domain of caregiving. Cohen and Lepkowski (2004) discussed the decline in fertility rates and the impact this will have on the ratio of caregivers available. Over 10 years ago, the National Chronic Care Consortium (1997) warned that the demographics of the increasing elderly population would shape future government health policies. Jennifer’s story illustrates that caregivers often want to provide more support, but are sometimes impeded from doing so by social and environmental constraints. Yet if she had been provided with adequate financial support (i.e., via petrol vouchers), she insists that her father would “have a better quality of life in his home.” Thus the challenge for service providers, health care workers, and policy makers is to listen and learn from the firsthand experiences of caregivers and take action to find a solution to the situation. This story also highlights the need for a more collaborative, coordinated system of support from all stakeholders to support caregivers, both financially and holistically. As Rosenthal et al. (2006) stated, the delivery system of care is “fragmented, inefficient, and poorly coordinated, especially considering the interdependency among its parts” (p. 117). The health care system needs to listen to the narratives of caregivers and its elements need to work together so that burden is reduced. It makes good economic sense, as well as ethical and practical sense, to provide caregivers like Jennifer with a responsive system that maximizes their caregiving capacity.

REFERENCES Aliotta, S., Archibald, N., Brown, R., Chen, A., & Fox, P. (2000). Best practices in coordinated care. Princeton, NJ: Mathematica Policy Research. Barber, C. E. (1988). Correlates of subjective burden among adult sons and daughters caring for aged parents. Journal of Aging Studies, 2(2), 133–144. Case Management Society of Australia. (2005). National standards of practice for case management. Victoria: Author. Cohen, S. B., & Lepkowski, J. M. (2004). Eighth Conference on Health Survey Research Methods. Hyattsville, MD: National Center for Health Statistics. Dewey, H. M., Thrift, A. G., Mihalopoulos, C., Carter, R., et al. (2002). Informal care for stroke survivors: Results from the North East Melbourne Stroke Incidence Study (NEMESIS). Stroke, 33(4), 1028–1033. Howell, D., & Ellis, J. (2005). A story telling approach to case management. Plenary abstract at the Case Management Society of Australia’s Eighth Annual Conference, 2005. Hyde, P. (2004). Care management, case management and utilization review in a managed care environment. An introduction to terms and concepts. Boston: Technical Assistance Collaborative. Jamrozik, A. (2001). Social policy in the post-welfare state. Sydney: Pearson Education. Kasuya, R., Polgar-Bailey, P. P., & Takeuchi, R. (2000). Caregiver burden and burnout. Postgraduate Medicine, 108(7), 1–7. McClelland, R., Austin, C., & Schneck D. (1996). Practice dilemmas and policy implications in case management. In C. Austin & R. McClelland (Eds.), Perspectives on case management practice (pp. 257–278). Milwaukee, WI: Families International. Millward, C. (1999). Caring for elderly parents. Australian Institute of Family Studies, 52, 26–30.

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National Chronic Care Consortium. (1997). Case management for the frail elderly: A literature review on selected topics. Minnesota Senior Health Options. National Chronic Care Consortium. (2000). Case management: Methods and issues. University of Maryland Center on Aging, Robert Wood Johnson Foundation Medicare/Medicaid Integration Program. O’Connor, I., Wilson, J., & Setterlund, D. (2003). Social work and welfare practice (4th ed.). Malaysia: Person Longman. Ozanne, E. (1990). Reasons for the emergence of case management approaches and their distinctiveness from present service arrangements. In A. Howe, E. Ozanne, & C. Shelby-Smith (Eds.), Community care policy and practice: New directions in Australia (pp. 186–194). Victoria: Public Sector Management Institute. Roach, M. J. (2005).Caregiving and family burden. Center to Improve Care of the Dying. Retrieved April 10, 2005, from www.gwu.edu-cicd/toolkit/caregive.htm. Rosenthal, M. P., Butterfoss, F. D., Doctor, L. J.,Gilmore, L. A., Krieger, J. W., et al. (2006). The coalition process at work: Building care coordination models to control chronic disease. Health Promotion Practices, 7, 117–126. Scharlach, A. E., Giunta, N., & Mills-Dick, K. (2001). Case management in long-term care integration: An overview of current programs and evaluations. Berkeley: University of California Press. Shanas, E. (1980). Older people and their families: The new pioneers. Journal of Marriage and the Family, 42, 9–15. Sorrell, J. M. (August, 2003). The ethics of diversity: A call for intimate listening in thin places. Online Journal of Issues in Nursing. Retrieved April 5, 2005, from www.nursingworld.org/ojin/ethicol /ethics_13.htm.

CHAPTER 9

Navigating Societal Norms: The Psychological Implications of Living in the United States with Disability Jennifer Gibson

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he purpose of this chapter is to share my personal experience with disability while highlighting the social constructs and obstacles people with disabilities face in the United States. I begin with a historical account of my parents’ being given the diagnosis of my being a “vegetable” as an infant and its impact on my family. I describe specific developmental milestones throughout my life to the present day, when I am actively involved on a national level as a psychologist. The second half of the chapter focuses on disability competency for clinicians and includes a description of the disability identity development model (DIDM) that I have created based on two decades of working with individuals with disabilities. This model provides insight into how people with disabilities perceive themselves within today’s society. As a psychologist, writer, and person with a disability, my intent is to demonstrate that disability is an inclusive factor in the life cycle and is a part of the great diversity within our society. Disability should not define a person, but be a contributing trait of an individual just like gender, ethnicity, sexual orientation, and socioeconomic status.

LIFE’S JOURNEY WITH A DISABILITY As far back as I can remember, I would look forward to Labor Day weekend. This would be the one opportunity of the year to see others who were similar to me. I would remind my mother that the Jerry Lewis Labor Day Telethon would begin on Sunday evening. Though I did not completely understand why I had created this annual family tradition, I knew that for

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one weekend out of the year, disability could be discussed. I had 2 days out of the 365 a year to explore my thoughts and feelings about strangers with disabilities on television with my family, while minimizing my own disability. This was quite a feat, needless to say! I began my life’s journey in the mid-1960s, being born as a typically healthy baby girl at a hospital in Los Angeles, California. Two days later, I was found not breathing and blue in the hospital’s nursery. I had been left unattended on my back. As a result, I choked on my phlegm. It just so happened that the nurse on duty had a grandchild being born during my brief stay. Instead of monitoring the nursery, she was in her daughter’s room, paying a visit. This one event set the stage for my life with disability. Once I had been revived and stabilized, my parents were told that the odds were not in my favor for survival. “At best,” they were told, “she will be a vegetable. You will need to consider your options, including placing her in an institution where she can be attended to. There is nothing more that we can do.” My parents refused to believe that my short life was over before it had begun. They transferred me to the children’s hospital in the area, hoping that I would receive the care and treatment that I would need to have a chance for living life. Following a week of tests and observation, my parents brought me home when I was 10 days old. They were told that I would be “fine” and that they should go home and enjoy their baby girl. My family was thrilled to have the opportunity of hope for the daughter that they had dreamt of the day I had been born. As time passed, my mom had begun to notice struggles as I reached developmental milestones. I would attempt to walk, but my balance would not allow me to take more than two steps. I began to form sounds, but would have difficulty pronouncing words. She discussed her observations with the pediatrician, who thought my 17-year-old mother was exhibiting signs of depression. Thus, the doctor dismissed my mom’s concerns and wrote her a prescription for an antidepressant. My mom did not allow her concerns to be dismissed. After much reading of medical journals, my mom found a description of my symptoms and took it to the pediatrician, who then agreed that I had cerebral palsy. During this same visit, the doctor presented my parents with the decision of having me institutionalized. This had been the common practice for dealing with children with disabilities. My parents thought such a question was absurd. From that day forward, my parents, especially my mom, advocated and sought out services that would increase my chances of living a full and independent life. With this, I began attending a school for the handicapped immediately to receive early intervention modalities, speech and physical therapies, while receiving a quality education. I enjoyed physical therapy since the therapists made it fun by playing games that increased my coordination. We would often played catch with a big ball, and over a few years time, the ball became a tennis ball as my abilities improved. Swimming was extremely fun! My confidence grew as my coordination increased. My experience with speech therapy was not as positive. In fact, I hated it! It was real work. I would have to say things that I just could not say. I would be told to repeat words that began with “l,” “s,” and “r,” which were the most difficult for me to pronounce. I remember crying during many sessions out of frustration. I would attempt

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to talk my way out of going to speech therapy. In fact, I was so desperate to avoid it, that one day I pretended to be sick and had my dad drive 50 miles to pick me up (normally a school bus would take me to and from school). In all of my memories surrounding my disability, I must say that the inability to be understood by others as a young child has been the most difficult experience. Repeating myself over and over was not only frustrating but quite embarrassing. I would try to think of words to replace words so that I could be understood. For example, when asked what I would like to have for lunch, I would say, “I want anything good to eat,” instead of saying what I actually wanted, “I would like spaghetti.” As a result, I often settled for something that I did not want due to my speech. Thus, I must admit that all of the frustration and tears that I had gone through with speech therapy paid off over the years. People besides my parents began to understand what I was saying. When I was six years old, the doctors who worked through my school offered an experimental corrective hip surgery to one boy and one girl who had displayed promise of excelling academically. I was the girl chosen. This surgery along with hospital costs came to tens of thousands of dollars. It would have been impossible for my family to have paid such a bill. Thankfully, all but $150 had been covered by nonprofit organizations and the hospital. My parents gladly struggled to pay the $150. Yet there was no guarantee of the surgery being successful. My parents asked me if I wanted to have the surgery, I eagerly answered, “yes.” Once the surgery had been completed, I struggled through rehabilitation while learning to walk again. It seemed as if the surgery had been a success. Therefore, when I was eight, I had the second hip surgery. However, this time, I wasn’t as eager. I can remember the morning of the operation, looking at and feeling the side of my unblemished thigh, where soon a long incision would be made. I began to cry. My dad asked why I was crying since I had not cried before my first surgery. I said that this time I was aware of what was going to happen as I began to cry harder. He told me that I didn’t need to be a crybaby and that I needed to be tough like before. From that moment on, I knew that I couldn’t share my thoughts and feelings about my disability with my dad. Believing that my dad was unable to discuss or just listen to me talk about the negative side of having a disability has been painful. Though I could speak more with my mom about my disability, I soon came to learn that my parents could not fully comprehend my life experience with a disability. Once completing rehabilitation for the second time, it became evident that both surgeries had been successful. I no longer walked on my tiptoes with my hands and arms up in the air for balance. There was no comparison to the before and after. Moreover, I had been the first successful patient who had received this procedure. I have been very thankful ever since, yet disturbed that I only had this chance because I had showed intellectual promise and that the surgery had been experimental and virtually free. I had been lucky, though I think of all the other children who could have benefited from the same opportunity. By age eight, I knew my life’s direction. I wanted to be a psychologist. However, I had no role model in my life to guide me toward this lofty goal.

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My parents had dropped out of high school, as had all members of my extended family. When I would share my goal with my parents, they would encourage me to follow my dream. They had instilled within me that I would need an education and could not simply rely on my physical abilities as they had. They did not want my disability to limit my life and wanted me to have every opportunity possible. With that, I was given a clear message that I would attend college. During third grade, a doctor at my school who had known me for five years began to discuss with my parents the possibility of my attending regular school. Dr. Morris told my mom that with the success of my surgeries, it had become evident that my current school was holding me back. However, it would be a very political move on her part to advocate on my behalf and that it could possibly take over a year before it could become actualized. Therefore, Dr. Morris wanted my parents to seriously consider this possibility before she took the risk of making waves within the school district. My parents asked me what I wanted. I did not hesitate to say that I wanted to attend the school right down the street from our home. That had always been one of my fantasies. My dad mentioned that the kids might laugh at me and asked if I would be prepared to handle their ignorance. “Yes, yes . . . I can handle it,” I replied without hesitation. I began regular school in fifth grade after much wrangling from Dr. Morris and my parents. There had been much trepidation from both schools. One did not want to release me because of state monies, the other did not want to accept me fearing that I would not succeed and would create confusion for their students. Though this was a public school in the early 1970s, they had not yet begun a special education program. Thus, students had not experienced a peer with a disability. I must admit, I have often wondered what my educational career would have been like if in fact they had a special education program. Would I have been presented with the same academic challenges? Needless to say, ultimately I had been allowed to attend the school down the street from home. However, to be considered, I would have to attend summer school. There were two motives in play. One was whether I could effectively academically compete with the other children, and second, whether I would be accepted as a peer. It was a “yes” to both, though I did experience ridicule and being laughed at by many of the children. Once most of them got to know me, they accepted me as a fellow student. Summer school proved to be a success, and onward I proceeded. During eighth grade, I was fortunate to have one of our state’s four-year universities visit my school. My family lived in a lower-middle-income neighborhood, and I and my fellow classmates were not expected to attend a fouryear college. I had never heard about the SAT or what class requirements were to be considered for admittance. I had thought as long as I had earned A’s and B’s in any class that I would be a shoo-in for college. I was a dry sponge soaking up every bit of information about college. In ninth grade, I had begun to take the required courses. I had to fight with my high school to remain in a qualifying English class due to my physical writing ability. My English teacher thought that because I had difficulty


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with cursive writing, I should be marked down one grade for all written work assigned. I would spend two hours on written homework that should have taken a half hour, leaving me with calloused fingers from gripping my pen tightly to write as neatly as possible. If I continued to be graded in this manner, in all probability, this would have left me with a C for the class. I shared my frustration with my mother, who, as always, advocated on my behalf. Though she had wished that I would drop out of this teacher’s class, she met with the principal to discuss the inequality in grading. I remember being called into their meeting along with my teacher. When asked for my reason for wanting to remain in this English class, I simply stated that this was the only qualifying college English course offered and I needed to take it. Discussion followed concerning my teacher’s grading practices and a decision was made in that whatever grade I earned on assignments was the grade I would receive, regardless of how curly my R’s and S’s may appear. In time, I grew fond of my English teacher. She graded me fairly from that day on. This is my first memory of advocating for myself. I had taken many lessons from my first mentor, my mother. I was filled with much excitement as I entered into 12th grade for I knew that in just one short year that I could be attending college. And not just attending college, but living away at college! As do many parents, mine struggled with the thought of their child moving away. They honestly did not realize the differences between community and state college and a four-year university. I applied to the university that had visited my junior high school. I only applied to this one university. It was nearly 50 miles away from home. By the next fall, I was moving into my dorm room. Lucky for me to have been accepted by the only school I had applied to! I was eager to meet with an academic advisor to select my courses. Unfortunately, the advisor provided inadequate assistance and I was in a statistics class that most students take during their senior year. By the second week of class, I knew that completing this course with any grade higher than an F would be impossible. Crushed with knowing that I would receive my first ever F, I had decided to focus my energies on my other classes and did not return to statistics. It was not until the spring term that somebody told me that students add and drop courses all of the time. I felt so embarrassed and angry knowing that my GPA was going to be impacted due to my ignorance. If only there had been someone who could have given me direction. Being fearful of having ruined my hopes of becoming a psychologist by having received an F, I sought out a clinician on campus to learn what preparation is required to become a psychologist. I walked into the university counseling center, presuming that I could find someone who could share this information with me. Unknown to me, I was about to meet my first professional mentor. I was introduced to Marikyo Adams, LCSW, and she took the time to assure me that a career in psychology remained quite possible. She explained the need to attend graduate school (I had never known of such schools) and various opportunities within the field of psychology. Throughout the years, our relationship has grown into a true friendship. After receiving my bachelor’s degree in psychology, I attended the one graduate school she had made me aware of. Due to my lack of knowledge, I

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applied to only this one graduate program. Luck or perhaps fate has been a guiding force in my life. I have fondly termed this phenomenon my “unseen mentor.” However, fate did not produce any mentors during my graduate school years, or for that matter, to the current day. I have had some near misses. However, those who I had viewed as mentoring material chose to mentor others. For example, I had introduced my best friend to one of my undergraduate professors who had many achievements within the field of psychology and had gained national acclaim and respect as a founder of multicultural psychology. I had hopes that he would give me direction regarding graduate schools and career opportunities. My hopes did not materialize. Instead, he became a mentor to my friend, guiding her throughout graduate school into her present career. I am very happy for my friend, though I wish that I could have also benefited from my professor’s knowledge and national network of psychologists. Toward the end of graduate school, I married a man that I had met at work. Prior to this, I had dated a few men throughout college. I had fallen in love once, however, the feelings were not mutual. That man had difficulty dealing with my disability. This did not sway my belief that if he had truly gotten to know me, he would love me. We dated on and off for eight years. With time, it finally sank in that the issue was not mine but his. I realized that he would never want to spend his life with me. After much time, I came to terms with loving him without spending my life with him. It was around this time that I met the man who became my husband. My mother had met my future husband just once before her untimely death. She liked him. She had never liked any man I had dated, so I thought this was a sign that he was the one. The day of her death, he proposed. Without hesitation, I said “yes.” We had a modest wedding a month later and moved across the country on my husband’s desires. I had known him less than six months. Three months later, we tried to get pregnant. We were successful on the first try. I was so happy! I had always wanted to be a mother. Shortly into the pregnancy, my husband began drinking. It became readily apparent that he had a problem with alcohol. Moreover, his personality was that of Jekyll and Hyde. He would become verbally abusive and physically violent. After witnessing such behavior, I calmly spoke with him the following day and said that if he continued to drink, I would not be able to stay with him. He said that he understood. He did not drink after that, at least until my son was born. My husband came to pick me and my son up from the hospital in a limousine. I should have been ecstatic. However, as my husband walked into the room, it became apparent that he had been drinking. He knew that I would not have had gotten into a car with him in his condition. So to deflect from his drinking, he rented a limo. My heart sank. What I had hoped to be the start of a beautiful family quickly became terror and a great disappointment. I had hoped that this would be an isolated drinking binge. However, it just was not to be. Six months later, I left my husband, though he did fight for custody of our son. He claimed that I was an unfit mother due to my disability. The courts were able to see through him. This was such a relief! For once in my life, I did


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not have to struggle to prove my abilities to a societal institution. However, I could not move back home, to my family and friends, until custody had been finalized. My soon-to-be-ex-husband resolved this matter by kidnapping my son. Thankfully, my son was returned safely within days. With this, the court ruled that I would have sole custody, with him only having court-supervised visitation. He refused such visitation, and my son and I went home to California. On returning home, I completed my dissertation and received my long awaited doctorate in psychology. My son was nearly four, and he can still recall the event. He is now 14, a high school student, and playing basketball for his school’s team. He has been nothing but a blessing in my life! I have instilled within him that he can be and do anything he sets his mind to. Likewise, he has encouraged me to fulfill my dreams of being a psychologist, professor, writer, and community leader. I am currently all of those. And, more important, I am what I had always dreamed of being—a mother!

DISABILITY PSYCHOLOGY People with disabilities are often overlooked as a part of the tapestry of diversity. However, this population spans every ethnicity, gender, sexual orientation, age, religion, and socioeconomic group ever known. Approximately one of every five Americans has a disability, comprising nearly 20 percent of our nation’s population (Waldrop & Stern, 2003). It is evident that people with disabilities, particularly people of color with disabilities, have less access to and availability of mental health services (U.S. Department of Health and Human Services, 1999). Section 2.01(b) of the American Psychological Association (APA) Ethics Code (APA, 2002) supports an affirmative need as a profession to develop disability-related competence. When working with clients with disabilities, it is vital to recognize the heterogeneity of this population. People with disabilities come from all facets of life. Moreover, they differ vastly from one another, such as lifelong versus acquired disabilities, type of disability (i.e., physical, sensory, learning, and psychological), and variation of level and impact of disability. With such diversity among people with disabilities, being a member of the disability community does not guarantee acceptance by other individuals with disabilities. Unlike other marginalized groups in society who take pride and celebrate their commonalities, people are not eager to become members of the disability population (Gibson, 2008). Families do not celebrate when a baby is born with a disability or when a relative acquires a disability. Children with disabilities mostly grow up with able-bodied family members who may attempt to understand their daily struggles but fall short of fully grasping the experience of the child with a disability. This is not due to lack of effort by family members but is attributed to not sharing the same life experience. Likewise, individuals with acquired disabilities initially may have family and friends rally around them. However, due to fears and an inability of relating to the individual’s experience, there is a tendency of others to withdraw over time. This may explain why the divorce rates among persons

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who acquire a disability have been reported to be anywhere from 8 percent to 48 percent (Kreuter, 2000). Those with disability do not differ from others in striving for psychological well-being. However, the mental health of these individuals is often ignored (Vash & Crewe, 2003; Williams & Upadhyay, 2003). In instances when mental health treatment has been sought, clinicians tend to focus on the disability and medical aspects of the person, thus depersonalizing the individual. Sadly, unknown to the clinician, this can lead to the revictimization of the client (Gibson, 2006) and the likelihood that they will not continue treatment. Many people with disabilities have internalized society’s perceptions of being just a medical diagnosis and have experiences of marginalization. Marginalization may also be experienced by a client with a disability when a clinician exhibits a variation of cultural encapsulation. Cultural encapsulation refers to the protective capsule or cocoon that some clinicians construct to protect themselves from meaningful engagement with persons from other cultures (Wren, 1962). However, unlike cultural encapsulation where there is no challenge to one’s cultural affiliation, clients with disabilities may not only represent a fear of the unknown but also bring about a sense of vulnerability for the clinician. Such vulnerability may include gaining a sudden awareness that disability is an equal opportunity life experience. Thus, perhaps for the first time in their lives, clinicians are being exposed to the concept that they or a loved one could acquire a disability. Similar to how many fear death and dying to avoid thoughts of one’s own mortality, working with clients with disabilities may trigger fear and avoidance of disability. This can lead to the concept of disabiliphobia, for lack of a better term. In a clinical setting, disabiliphobia, a fear of people with disabilities or perhaps a fear of what they may represent, might explain why some clinicians depersonalize clients with disabilities. Depersonalization can serve as a protective barrier from meaningful engagement, allowing them to avoid feelings of vulnerability. Disabiliphobia can interfere with the delivery of competent and effective treatment. The limited exposure to training opportunities may leave psychologists prone to biases and misconceptions about disability (Taliaferro, 2005). The inclusion of disability within clinical training programs would lend exposure to future clinicians and may begin to alleviate disabiliphobia. However, training related to disability has been difficult to attain (Leigh, Powers, Vash, & Nettles, 2004). This oversight might be attributed to our society historically viewing disability from a medical model (Leeds Metropolitan University, 2005). This model states that disability represents a defect or loss of function that resides in the individual. In turn, medical doctors have treated people with disabilities exclusively with surgery and/or medication. These individuals often are viewed as “scientific subjects” and are probed as if they are inanimate objects, communicating an unspoken message that they are not fully human. Moreover, whatever its outcome, this medical treatment is seen as good enough practice and worthy of appreciation by the individual as an attempt to improve one’s life. Recently, a societal shift has emerged away from the medical model to social and minority models (Gallardo & Gibson, 2005). These models view disability as an external problem involving an environment that fails to accommodate the needs of individuals with disabilities. The models shift the


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responsibility of accommodation from the individual to the society that needs to accommodate them as individuals. Therefore, it is essential when establishing the initial therapeutic alliance to not assume that a client’s presenting problem is his or her disability. Individuals are multidimensional and experience life and its struggles in the same manner as others. Clinicians should not assume that disability is or should be the focus of treatment (Gibson, 2008). Disability is an added variable that necessitates a clinician’s awareness and sensitivity. It should be noted as with clients without disabilities. Clients with disabilities will seek a clinician based on their area of specialization (i.e., phobias, adjustment issues). For this reason, it is imperative that all clinicians possess disability-related competence to provide services to all persons who could benefit from their expertise (Johnson-Greene, 2006). To minimize the revictimization of clients, disability-competent treatment is needed and includes: 1. sensitivity toward disability, 2. confronting one’s own beliefs and disability-related stereotypes, and 3. knowledge of disability. Table 9.1 is an introduction to the DIDM (Gibson, 2006). I have developed this model over two decades of working with clients with disabilities by noting common characteristics, issues, and preferences they share. Based on the resources of existing multicultural identity models (Atkinson, Morten, & Sue, 1993; Cross, 1971; Helms, 1990), this disability-specific model is intended to facilitate understanding for persons with lifelong disabilities while increasing the ability of professionals to provide competent treatment to this underserved population.

Table 9.1 Disability Identity Development Model Stage 1: Passive Awareness: First part of life 0–? Can continue into adulthood

Stage 2: Realization: Often occurs in adolescence/early adulthood

No role model of disability Medical needs are met Taught to deny social aspects of disability Disability becomes silent member of family Codependency/“good boy/good girl” Shy away from attention Will not associate with others with disability

Begins to see self as having a disability Self-hate Anger: Why me? Concerned with how others perceive self Concerned with appearance “Superman/woman” complex

Source: Gibson (2006).

Stage 3: Acceptance: Adulthood Shift focus from “being different” in a negative light to embracing self Begins to view self as relevant; no more no less than others Begins to incorporate others with disabilities into life Involves self in disability advocacy and activism Integrates self into majority (able-bodied) world

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As with other multicultural identity models of development, the DIDM promotes understanding of a client by giving insight into her or his possible perceptions and struggles. However, one should not assume that all clients with disabilities must fit into a particular stage. Identity development of people with disabilities can be fluid. Thus, a client may have reached Stage 3, Acceptance, but may revert to Stage 2, Realization, when faced with job discrimination or lack of dating partners. The feelings of “Why me?” and anger can resurface, creating much frustration for the client since she or he might have thought that she or he were beyond such feelings. In contrast to people with lifelong disabilities, people who experience later-onset chronic illness or acquired disability may find their sense of self suddenly and dramatically challenged or altered (Bishop, 2005). Thus, such clients may be faced with significant changes in their social and familial relationships and life roles while dealing concurrently with psychological distress, physical pain, prolonged medical treatment, and gradually increasing interference in or restriction of the performance of daily activities (Livneh & Antonak, 1997). Therefore, disability identity development for people with acquired disabilities may resemble those with lifelong disabilities yet differ because they have a comparison of life with and without disability. Understanding how people navigate this process of adapting to disability-related changes and applying this understanding in the form of effective clinical interventions have been important focuses of rehabilitation research for several decades (Elliott, 1994; Wright & Kirby, 1999). Common traits that many clients with chronic illnesses and acquired disabilities have been shown to share include the processing of the stages of grief (i.e., denial, anger, bargaining, depression, and acceptance) (Kübler-Ross, 2005). Although a client may reach acceptance of disability, he or she may often have “what if there is a cure?” thoughts and a yearning to achieve the level of functioning he or she once experienced. Though their physical bodies may have acquired disability, they have lived able-bodied lives up until the time of accident or disease. Thus, clients with acquired disabilities may successfully integrate disability into their sense of self while retaining an able-bodied perception of the world. Moreover, other aspects of the client, for example, ethnicity, gender, sexual orientation, and so forth, should not be ignored. Rather, clinicians should integrate what they know about other cultures and incorporate it into treatment. The APA (2003) Multicultural Guidelines state that “All individuals exist in social, political, historical, and economic contexts, and psychologists are increasingly called upon to understand the influence of these contexts on individuals’ behavior.” As clinicians begin to consider the identity development of people with disabilities within practice, the following communication strategies are recommended to assist in providing competent treatment to this population: • Incorporate all aspects of the individual (e.g., gender, ethnicity, sexual orientation, etc.) into treatment. • Use person-first language. Language empowers. • Speak directly to the person rather than through a companion or sign language interpreter. Although at times, the personal assistant needs to be


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included in a session/meeting, people with disabilities have the right to expect privacy, confidentiality, and to participate in decision making regarding their mental health care. Do not assume a person with a physical disability is either hard of hearing or has a cognitive disability as well. Speaking louder is not typically necessary or more helpful. When meeting a person with a visual disability, always identify yourself and others who might be with you. When conversing in a group, remember to identify the person to whom you are speaking. Treat adults as adults. Address people who have disabilities by their first names only when extending the same familiarity to all others. Listen attentively when you are speaking with a person who has difficulty speaking. Be patient and wait for the person to finish, rather than correcting or speaking for the person. If necessary, ask short questions that require short answers, a nod or shake of the head. Never pretend to understand if you are having difficulty doing so. Instead, repeat what you have understood and allow the person to respond. The response will clue you in and guide your understanding.

CONCLUSION There were two goals for this chapter. The first was to provide a window into life with a disability in the United States. Yes, there are additional struggles that I have faced because of disability, mostly caused by others’ attitudes and beliefs about disability. Yet I feel as if I have experienced life as much as any other person. I have been a daughter, mother, spouse, friend, student, and professional. I have experienced happiness and heartache. I have been given opportunities and have missed out on others. I have experienced life. The second goal of this chapter was to provide a window into disability competency within clinical work. Disability is a natural part of the life cycle. It is just part of the great diversity within our society. It should not define a person, but should be a contributing trait of an individual, such as gender, ethnicity, sexual orientation, and socioeconomic status. If the reader’s awareness of disability and competent treatment has increased as a result of reading my story, then my intention has been realized.

REFERENCES American Psychological Association. (2002). Ethical principles of psychologists and code of conduct. American Psychologist, 57(12), 1060–1073. American Psychological Association. (2003). Guidelines on multicultural education, training, research, practice and organizational change for psychologists. American Psychologist, 58(5), 377–402. Atkinson, D. R., Morten, G., & Sue, D. W. (1993). Counseling American minorities: A cross-cultural perspective (4th ed). Dubuque, IA: Brown & Benchmark. Bishop, M. (2005, April–June). Quality of life and psychosocial adaptation to chronic illness and acquired disability: A conceptual and theoretical synthesis. Journal of Rehabilitation. Retrieved May 1, 2008, from findarticles.com/p/articles/ mi_m0825/is_2_71/ai_n13820423.

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Cross, W. E. (1971). The Negro-to black conversion experience: Towards a psychology of black liberation. Black World, 20, 13–27. Elliott, T. R. (1994). A place for theory in the study of psychological adjustment among persons with neuromuscular disorders: A reply to Livneh and Antonak. Journal of Social Behavior and Personality, 9, 231–236. Gallardo, M. E., & Gibson, J. (2005). Culturally diverse individuals with disabilities: Meeting therapeutic needs. Framingham, MA; Microtraining and Multicultural Development. Retrieved from www.emicrotraining.com. Gibson, J. (2006). Disability and clinical competency: An introduction. California Psychologist, 39, 6–10. Gibson, J. (2008). Clinical competency and culturally diverse clients with disabilities: The case of Linda. In M. E. Gallardo & B. McNeill (Eds.), The clinical casebook of multicultural psychology: Implementation of culturally proficient treatment strategies. Mahwah, NJ: Erlbaum. Helms, J. E. (1990). Training manual for diagnosing racial identity in social interactions. To accompany Black and White racial identity: Theory, research, and practice. Topeka, KS: Content Communications. Johnson-Greene, D. (2006). Ethics of testing and assessment of persons with disabilities: Moving towards disability-related competence. Rehabilitation Psychology News, 33(3), 12–13. Kreuter, M. (2000). Spinal cord injury and partner relationships. Nature, 38(2), 2–6. Retrieved April 29, 2007, from www.nature.com/sc/journal/v38/n1/ abs/3100933a.html. Kübler-Ross, E. (2005). On grief and grieving: Finding the meaning of grief through the five stages of loss. New York: Simon & Schuster. Leeds Metropolitan University. (2005). Defining disability—medical model. Retrieved September 7, 2006, from www.lmu.ac.uk/metoffice/stuserv/disability/ modelsmedical.htm. Leigh, I., Powers, L., Vash, C., & Nettles, R. (2004). Survey of psychological services to clients with disabilities. Rehabilitation Psychology, 49(1), 49–54. Livneh, H., & Antonak, R. F. (1997). Psychosocial adaptation to chronic illness and disability. Gaithersburg, MD: Aspen. Taliaferro, G. (2005). Evidence-based practices and disability. Division 22 newsletter, 32(4). U.S. Department of Health and Human Services. (1999). Mental health: A report of the Surgeon General. Rockville, MD: U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health. Vash, C. L., & Crewe, N. M. (2003). Psychology of disability (2nd ed). New York: Springer. Waldrop, J., & Stern, S. M. (2003). Disability status: Census 2000 brief. March. Retrieved on February 1, 2008, from www.census.gov/prod/2003pubs/c2kbr-17.pdf. Williams, M., & Upadhyay, W. S. (2003). To be or not be disabled. In M. E. Banks & E. Kaschak (Eds.), Women with visible and invisible disabilities: Multiple intersections, multiple issues, multiple therapies (pp. 145–154). New York: Haworth. Wren, C. G. (1962). The culturally encapsulated counselors. Harvard Educational Review, 32, 444–449. Wright, S. J., & Kirby, A. (1999). Deconstructing conceptualizations of “adjustment” to chronic illness: A proposed integrative framework. Journal of Health Psychology, 259–272.

CHAPTER 10

Disabilities and Employment in the United States, Kenya, and the Philippines: A Race and Class Perspective Elaine A. Burke and Patricia Denise Lopez

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here has been very little attention paid to the needs of People of Color with disabilities. According to the U.S. Census Bureau (2007), People of Color in the United States currently number 100.7 million, one third of the nation’s population—a significant proportion of the U.S. population. Latinos and Asian Americans are the fastest growing groups, with 3.4 percent and 3.2 percent increases, respectively, from July 2005 to July 2006. The percentage of African Americans grew by 1.3 percent, while non-Latino/a European Americans showed very little growth (0.3 percent) during the same period. Recent immigration statistics (U.S. Department of Homeland Security, 2007) has further indicated that the percentage of immigrants from Asia, Mexico, Central and South America, and Africa has increased dramatically from the 1950s to 2006. With respect to disabilities, People of Color also have a disproportionately higher number of disabilities and a larger percentage of them are in low-income brackets (Waldrop & Stern, 2003). The field of multicultural psychology has described the negative impact of oppression on minority individuals, particularly People of Color. Oppression can lead to identity confusion (while attempting to conform to the dominant culture), and this oppression can become internalized, resulting in a decreased self-worth. Some of the potential effects are alcoholism, violence, and suicide. There may be an increase in crime and delinquency and the maintenance of an environment that limits individuals’ opportunities for advancement. David and Okazaki (2006) believe that the negative impact of racial oppression and historical trauma is very similar to the effects of colonization. Internalized oppression is common among many colonized individuals and

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people from previously colonized countries and can lead to similar beliefs and behaviors. Therefore, there may be commonalities between People of Color in the United States and individuals from previously colonized countries. The interactions among race, poverty, employment, and disability are complex, with the relationships among many of these constructs being bidirectional and circular. To more fully understand this situation, it is beneficial to explore related areas in more detail. This chapter summarizes the situation of People of Color with disabilities, including a focus on factors affection their employment. We highlight the impact of social class. Finally, we consider the issues of race and class from a more global perspective by exploring how they may apply to less economically developed,1 formerly colonized countries, using our experience with Kenya and the Philippines as examples.

PEOPLE OF COLOR IN THE UNITED STATES AND DISABILITY Disability rates tend to be higher among ethnic minorities (Banks & Ackerman, 2006). Data from the 2006 American Community Survey showed that 22 percent of Native Americans and 18 percent of African Americans who were of working age reported a disability compared to 13 percent of European Americans and 6 percent of Asian Americans (Rehabilitation Research and Training Center on Disability Demographics and Statistics, 2007). In 2008, Adams, Lucas, and Barnes (using data from the 2006 National Health Interview Survey) reported that African Americans were significantly less likely than European Americans and Asian Americans to be in excellent health, and they were also more likely to be unable to work due to health reasons. The poverty rates of African American, Native American, and Latino families with members with a disability (25 percent, 26 percent, and 23 percent, respectively) were much higher than poverty rates of their European American and Asian American counterparts, at 8 percent and 12 percent, respectively (Wang, 2005). Most Asian Americans and Pacific Islander groups seem to have lower levels of disability and have better socioeconomic profiles (Smart & Smart, 1997). However, this finding is not true of the more recent Asian immigrants such as the Hmong, Laotians, Vietnamese, and Cambodians, many of whom were refugees and who tend to be poorer and less educated than other Asian Americans who have been living in the United States for many generations, such as Japanese Americans or Chinese Americans.

Disability and Employment Among People with Disabilities who are employed full-time, both African Americans and Latinos with disabilities are significantly underrepresented (Bradsher, 1996; Leung, 1993). Trupin, Sebesta, and Yelin (1997) found that disability accentuates the impact of race and ethnicity on employment rates (particularly among men). Reaves (2000) stated that when African American men seek employment, generally they must either find an African American

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employer, a company with affirmative action hiring practices, or a company that is desperately seeking employees. Even today, employer discrimination, prejudice, and reluctance to hire pose major barriers to the employment of People with Disabilities (National Council on Disability, 2007). People of Color who are disabled face double discrimination in the workplace, even triple discrimination when they are women (Banks & Marshall, 2004). In addition to the overt and subtle (aversive) racism encountered by many People of Color seeking employment (Dovidio, Gaertner, Kawakami, & Hodson, 2002), there has been a decrease in the amount of blue-collar jobs, a relocation of industries to suburban areas, and a shift to positions that necessitate more specialized training for beginning-level positions (Johnson, 2000). In combination, these factors have impacted the ability of young, urban, People of Color to obtain employment. Instead, their employment opportunities have been limited to low or minimum wage positions that, despite long hours, provide little income.

Factors Contributing to Disability and Employment among People of Color Thompson-Hoffman and Storck (1991) reported that there are several variables that are consistently correlated to work disability over time and across various survey sources: age, race, income, education, labor force participation, and marital status. Poor prenatal care, poor nutrition, low access to health care, greater risks for physical injuries due to the type of occupations and living conditions, lower education, and lack of health care knowledge all contribute to the higher disability rates among People of Color (Asbury, Walker, Maholmes, Rackley, & White, 1992). According to Smart and Smart (1997), there are five societal conditions that contribute to the disproportionately higher rates of disabilities among racial/ethnic minorities: 1. 2. 3. 4. 5.

low income and poverty; employment in dangerous jobs; lack of health insurance; low educational attainment; and faulty testing and diagnostic conditions.

It appears that one of the most important factors contributing to disability rates is poverty. Poverty is often defined in terms of monetary wealth. Some individuals have a sudden change in socioeconomic status (SES) due to the loss of employment. Others live in chronic poverty. There is strong evidence that ethnic minorities, particularly Latinos and African Americans, are overrepresented in the lower socioeconomic classes and they comprise a larger proportion of the working poor (U.S. Bureau of Labor Statistics, 2007a; Webster & Bishaw, 2007). More African American and Latino children live in poverty and are more likely to be chronically poor than European American children (Brooks-Gunn, Duncan, & Maritato, 1997). Albeda and Tilly (1997) found that the people most likely to be poor tend to live in cities and also do not finish high school or pursue higher education.

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McNeil (1993) reported a strong association between years of schooling completed and the likelihood of having a disability. African Americans, Latinos, and Native Americans are less likely to graduate from high school than European Americans (National Center for Education Statistics, 2008). Suzuki and Valencia (1997) reported that African Americans, Latinos, and Native Americans are more likely to be diagnosed with a learning disability or mental retardation. Such diagnoses may well lead to separation from mainstream education, resulting in unequal opportunities in the future. Children from schools in high-poverty areas might be considered less competitive for employment. People of Color might also be less able to leave a high-poverty area due to segregation and discrimination. Employment in physically dangerous jobs is a major condition related to the higher occurrence of disability among racial/ethnic minorities (Banks & Marshall, 2004). Data from the 2000 U.S. Census show that while European Americans and Asian Americans are dominant in management, professional, and related occupations; African Americans and Latinos are overrepresented in production, transportation, and material moving occupations. Latinos are also prominent in farming, fishing, and forestry jobs (Fronczek & Johnson, 2003). Moreover, members of racial minority groups tend to be in construction and extraction jobs as well as service occupations like building and grounds cleaning and maintenance, protective service and security work, and food preparation and serving (U.S. Bureau of Labor Statistics, 2007b). Foreign-born workers, the majority of whom are Latinos (50 percent) and Asians (22 percent), are also more likely than their U.S.-born counterparts to be employed in similar occupations (U.S. Bureau of Labor Statistics, 2007c). More physically demanding and higher risk jobs make members of ethnic minority groups more vulnerable to higher disability rates than European Americans (Meadows, 1999). Pritchard (2004) chronicled the working conditions of migrant Mexican American workers and noted that the accidental death rate of migrant farm workers was four times the national average. People of Color and immigrants might have difficulty finding alternative forms of employment due to lower levels of education and acculturation (particularly proficiency with the English language). People of Color in the United States are much less likely to have health insurance than European Americans (Smedley, Stith, & Nelson, 2003). A disproportionate number of cultural minority populations, particularly Latino Americans, are among the working poor (and perhaps cannot afford insurance) or are not offered or provided insurance by their employers. Latino Americans are overrepresented in either service-oriented or blue-collar positions that generally do not provide employer-based insurance. Lack of insurance is an important factor in health care, and people without insurance may postpone or not seek medical treatment, which could potentially lead to chronic health problems. To summarize, People of Color in the United States have higher rates of disability, which might be related to issues of low income, low educational attainment, being inadequately diagnosed, and not having health insurance. When they have disabilities, their chances of obtaining and retaining employment are more severely impacted. Many of them work in jobs which are


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physically demanding and dangerous (due to limited options) and having a physical disability would effectively eliminate their opportunities to work in these positions. They also experience increased employer prejudice and discrimination as racial stereotypes interact with beliefs about People with Disability. People of Color from other countries might face similar experiences. The issues of disability and employment might be particularly profound among individuals in less industrialized countries where there is high poverty, high unemployment, little knowledge about disability, and minimal governmental support for disabled individuals.

GLOBAL PERSPECTIVE ON HEALTH AND DISABILITY It is estimated that there are half a billion People with Disabilities worldwide, and the global population of People with Disabilities is expected to increase (Priestley, 2001). About 80 percent of the disabled population live in less economically developed countries. However, most of the research and academic literature is from the more economically developed countries in Western Europe and North America, which comprise the numerical minority of People with Disabilities in the world. Importantly, it is the perspective from this Western minority that currently creates the worldview about disability (Priestley, 2001). In both less industrialized countries and more industrialized countries, there are barriers that exist for people who are disabled. However in less industrialized countries, People with Disabilities have to compete with the mainstream population over very scarce resources. While People with Disabilities in more industrialized countries are perceived to be seeking independent living, people in less industrialized countries are trying to survive (Stone, 2001). Poverty appears to be a recurring theme in various reports on disability in less industrialized countries. Nagata (2007) discussed the vicious cycle of poverty and disability in less economically developed countries. Nagata believes that poverty leads to malnutrition and disease, which in turn lead to impairment and disability, which then contribute to poorer levels of human development and productivity within the community. Due to inadequate funding, there is very little medical care and rehabilitation provided. Very little is done in the way of prevention and early intervention, which again increases the incidence of impairment and disability. In less industrialized countries, SES might be even more important in regard to disability than in the United States. Ghai (2001), who lives in India, describes from her own experience how disability might differentially affect her (as she has access to a computer and a hand-driven car) as compared to other People with Disabilities who are not as privileged as she is. She indicated that People with Disabilities in less economically developed countries are particularly affected by class. People with adequate means can procure assistants and devices that allow the functional impact of their disabilities to be relatively minimized (Charlton, 1998), and they might be able to work and be more of an active part of society. Being employed has a number of advantages,

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as it allows the person to cover the additional costs of having an impairment, which can include obtaining access to services and information. Being employed also helps reduce the negative stereotypes that are associated with not working and receiving governmental assistance (in some countries). The next section discusses issues of disability, employment, and class in two less industrialized and formerly colonized countries with which we have experience: Kenya and the Philippines. Academic research on disability in these countries, as in most less economically developed countries, is extremely limited. However, relevant information is available through reports from government agencies, international organizations, conferences, and the media.

Disability in Kenya One of the areas of the world which has a large number of less economically developed countries is Africa. The continent has been plagued with a history of colonization and slavery, in addition to ongoing problems of poverty, disease, violence (in some situations massive genocide), and unstable governments. Its history of colonization has strongly contributed to some of the current problems. Africa is a continent that was colonized by various countries in Europe and the enormous impact of this colonization continues to this day. According to Adi and Sherwood (2003), during colonization, Europe gained its wealth through slavery and the work of the Indigenous people. The colonized people were controlled, they were treated as objects, and their culture was destroyed. Majiet (1998), who is South African, believes that Africa has difficulties due to colonialism, exploitation, Europeans’ sense of “racial superiority,” and apartheid. He thinks that it has been a continent where there has been a disregard for human rights. Although it is not resolved, he believes that the global issue in the 20th century was about race and in the 21st century, it is about poverty. He recommends considering how issues related to disability fit into issues of poverty. Kenya, located in East Africa, was colonized by Great Britain and gained independence in 1963.2 According to a report called State of Disabled Peoples Rights in Kenya (African Union of the Blind [AUB], 2007), approximately 75 percent of the work force in Kenya is engaged in agriculture, mainly to provide for the population’s own subsistence. There is a high dropout rate from school, and the HIV/AIDS pandemic has also had a significant impact. Unemployment is approximately 40 percent, and 50 percent of the population lives in the slums. Between half a million to a million people live in Kibera, the second largest slum in Africa (second to Soweto, South Africa). The AUB report estimated that there are approximately 3 million People with Disabilities in Kenya. Fifty-six percent of Kenya’s population lives below the poverty line, which impacts the living conditions of people who are disabled within the country. The government has signed the International Convention on the Rights of Persons with Disabilities, but has not yet ratified it. The Kenyan government has also enacted the Persons with Disabilities Act (PDA) of 2003, which was developed to oversee the welfare of People with Disabilities. Although the Kenyan constitution prevents discrimination on


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the basis of tribe, race, and color, it does not specifically preclude discrimination based on disability and when there have been cases of discrimination based on disability, the antidiscrimination laws have not been enacted. Kenya does not have a system in which People with Disabilities are given monetary assistance; however, there are programs to assist with their rehabilitation and there is an integration policy in which Children with Disabilities are placed in the general school system. Seventy-four percent of People with Disabilities who were interviewed for the AUB report indicated that they were restricted from making decisions about their lives; 86 percent reported being discriminated against by individuals without disabilities (including their own families), and 80 percent thought that they had been segregated, isolated, and not given adequate support due to their disabilities. Fifty-four percent have been given nicknames based on their disabilities. Seventy-two percent thought that there was abuse and discrimination in a number of contexts. The AUB report noted that in Kenyan society, there is considerable discrimination toward People with Disabilities in which they are seen as useless, burdens, and even cursed. Even their own families discriminate against them; in some cases, families of Individuals with Disabilities have hidden them or locked them in the house and have not taken them to school or to hospitals. Some parents believe that disability is a curse and that it is hereditary (can be passed from parent to child). Family members might also make negative remarks about Individuals with Disabilities and even deny their right to inherit property and land, thus increasing their likelihood to experience poverty. People with Disabilities have many stories to tell about their abuse by the general public, including police officers and government officials. About 30 percent of the disabled population surveyed in the AUB report faced discrimination in the workplace. Their performance is considered to be less competent than others. Many people without disabilities do not want People with Disabilities to work near them. Individuals with Disabilities have also been maltreated by their bosses and when they submitted complaints, they were usually ignored and were given even worse treatment by their bosses. Managers often think that People with Disabilities cannot perform work tasks or that they will be unsafe in the work environment and therefore they will not hire them. Many People with Disabilities either sell small items on the street or beg. The disabled population in Kenya also has problems with transportation to places of employment and accessibility at the workplace. Participants in the AUB study described difficulty with public transportation in which drivers would not wait for them. There are problems with mobility in many places of employment, and elevators are seldom available. They have difficulty accessing government resources. In Kenya, there is corruption in which bribes are expected for performance of government services. People without adequate financial resources are unable to pay such bribes. People with Disabilities who are poor have also found it difficult to obtain the capital to start their own businesses. Often the ability to obtain a job depends on personal relationship and financial ability (sometimes a bribe is required). People with Disabilities, who

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are often poor and isolated from others, do not have the means to obtain a position. Even in very poor families, they are considered a burden as they might be seen as being unable to contribute to family duties or tasks. Status in Kenya is based on economic power, and if a Person with a Disability has money, he or she would most likely be protected and his or her rights would not be violated. However, most People with Disabilities have limited economic resources and they suffer considerable discrimination and denial of human rights. Thus, in Kenya, class adds considerably to the impact of a disability on an individual. While the dominant population in Kenya appears to have negative attitudes toward People with Disabilities, who also face considerable discrimination in the workplace, one of the most traditional tribes, the Maasai, appear to have different perceptions. In terms of monetary wealth, the Maasai might be considered to be one of the poorest populations. The Maasai tend to be herders who are nomadic, although they might be sedentary for some time. The Maasai culture recognizes a variety of impairments and attitudes toward these individuals are not based primarily on the impairment. According to Talle (1995), the Maasai classify people who are disabled according to functional competence. People who look different from the typical person are only considered to be disabled if it limits them functionally. The impairment is described specifically, and there is not a word for disability. The Maasai believe that disease is due to social or divine relationships, and deviating from moral conduct or rules can lead to problems like diseases that cannot be cured. When a child is born with a disability, the disability might be attributed to misfortune brought about by difficult living circumstances or sin due to the reputation of ancestors. The child is not blamed for this. Disability and disease can also be caused by a curse or sorcery from other people. When a disease develops, people will seek either traditional or modern methods to cure it. If it does not improve, it might become a disability. Children who are born ill or with an irregular appearance are treated the same way as other children. They are not given special care, they are not favored, and they are not treated poorly. They can have children and if not married, they can live in their home of origin and bear children. They participate in all of the activities in the community that they are able to and are not hidden or ostracized. A report from the Kenya National Commission on Human Rights (KNCHR, 2007) indicated that to increase the opportunities for employment and alleviate the poverty for disabled people, they need to have access to education. They found that legislation does not adequately address the needs of Children with Disabilities and only a small percentage attends school. Schools are underresourced, teachers have inadequate training, there is no specific curriculum for Children with Disabilities, and there is inadequate inspection of schools to determine if they meet the needs of Children with Disabilities. The authors of the report believed that the problem in educating People with Disabilities is within society (and not with the individual) and that education is a right. The KNCHR stated that “Governments are obligated to make education available, accessible, acceptable and adaptable for all children” (p. 13) and that People with Disabilities should be given


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vocational training since it is the “bridge” between education and employment. However, one of the difficulties in providing what the children need is the expense, especially as 50 percent of the Kenyan population lives below the poverty line.

Disability in the Philippines Approximately two-thirds of the world’s 600 million People with Disabilities live in the Asia-Pacific region (South Asia Human Rights Documentation Centre, 2003). Many of these People with Disabilities live in poverty, and less than 10 percent of the young People with Disabilities attend school. The employment rates of People with Disabilities appear to vary widely among the Asia-Pacific countries. The Philippines is a group of islands located in the Pacific Ocean east of Southeast Asia and is populated by multiple ethnic groups, primarily Christian Malays (92 percent), Muslim Malays (4 percent), and Chinese (2 percent). It was colonized by other countries (notably Spain for over 300 years, then the United States for nearly 50 years). In Philippines society, there is a big gap between rich and poor, with very few families controlling the majority of land, industrial assets, and business interests. There is a growing middle class of skilled and semi-skilled workers. However, most Filipinos/as still live in relative poverty, residing in rural areas as well as “urban slums.” According to the Asian Development Bank (ADB, 2000), approximately 34 percent of the population is considered to be living below the national poverty level. The exact number of Filipinos/as with disabilities is not known (Fermin, 2003a). It could range from one million (one 1 percent of the population, as reported by the National Statistics Office, 2005) to eight million (using the World Health Organization estimate that roughly 10 percent of the population of less industrialized countries have disabilities). These differences are due to varying definitions of disability, instrument sensitivity, and data collection issues (Fermin, 2003a; United Nations Economic and Social Commission for Asia and the Pacific [UNESCAP], 2005). Like many other collective societies in Asia and the Pacific Islands, Filipinos/as make caring for a family member with a disability a priority in terms of time, effort, and finances. Typically they do not readily access service providers regarding a disability in the family. For many Filipinos/as, lack of knowledge, lack of money, shame, and embarrassment contribute to their preference to keep the disability contained within the family. Filipinos/as would initially seek the help of knowledgeable individuals through some social or family connection, and only when this does not work do they go out of their immediate circle to seek professional help (de Torres, 2002). The general attitude among Filipinos/as is that Individuals with Disabilities should not and need not live apart from their families (Oka, 1988). Outside factors, such as the lack of accessible transportation and buildings, lack of quality education to suit their needs, limited employment opportunities, limited medical services, and the general attitudes of the community and prospective employers, also limit opportunities for independence for Filipinos/ as with Disabilities.

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There are very few schools in the Philippines that accept Children with Disabilities due to the lack of facilities and appropriately trained teachers (Asia-Pacific Development Center on Disability, 2002). These schools also lack adapted materials and have limited accessibility. The few schools that offer superior curriculum, teachers, and accessibility tend to be private schools that only the middle- and upper-class families can afford. The government supports a number of vocational and rehabilitation centers for training People with Disabilities, but many of the facilities are old and the equipment is either obsolete or dysfunctional. Based on the 2000 Philippine census (National Statistics Office, 2005), 57 percent of Filipinos/as with Disabilities are gainfully employed (they either have a job or a business). Approximately 30 percent of the Filipinos/as with disability who are gainfully employed are farmers, forestry workers, or fishermen. A little over 10 percent of Individuals with Disabilities are laborers and unskilled workers. These jobs are typically low-paying. Similar to the situation in other less industrialized countries, most Filipinos/as with Disabilities live in poverty. The exceptions are those at the top of the socioeconomic ladder, whose families have more of an ability to pay for basic needs, health services, rehabilitation, education, and training. To a large extent, the experience of disability in the Philippines depends on the person’s social class. Among the majority (poorer, lower SES classes), the challenge is survival. Among the minority upper classes, the challenge is achieving greater independence and becoming contributing members of society. The Philippines have made great strides toward promoting the rights of People with Disabilities in the past 15 years, starting with its Magna Carta for Disabled Persons, patterned after the Americans with Disabilities Act. The period 2003–2013 was declared the Philippine Decade for Persons with Disabilities. The National Antipoverty Action Agenda was also launched in 2000, and its programs specifically include disabled persons among the 10 groups vulnerable to poverty (ADB, 2000). Nevertheless, a lot of work remains to be done regarding issues related to disability, poverty, and employment. Job choices for Filipinos/as with Disabilities continue to be limited and the pay relatively low (e.g., hearingimpaired persons work in fast-food chains, and blind persons work as massage therapists or musicians). Sheltered employment (mostly contractual work in manufacturing or handicrafts) is offered by the government as a means of providing work for People with Disabilities who cannot compete in the open market. However, sheltered employment is not necessarily ideal due to the low wages, poor conditions, and segregated work settings (Favis, 2002). Many People with Disabilities earn their living in the streets by begging or vending. A number of them have even chosen to continue with demeaning jobs (like being carnival attractions due to their appearance being markedly unusual) because the extremely low wages at sheltered workshops are not enough to provide for their basic survival (Favis, 2001). The high levels of unemployment and underemployment in the Philippines pose significant barriers to People with Disabilities in finding suitable employment in the open market. Negative perceptions about People with Disabilities pose another obstacle. Despite government incentives and an


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antidiscrimination law, employers still tend to be reluctant to hire People with Disabilities and do not want to invest in making their workplaces more accessible. One observer (Kono, 2002) commented that she had not heard of any firm applying to receive government incentives for employing People with Disabilities, most likely due to the paperwork and bureaucracy it entailed. Overall, although there is disability legislation in the Philippines, there is a need for stronger enforcement and implementation (Ilagan, 2006; UNESCAP, 2005). Nongovernmental organizations (NGOs) and civic organizations play a major role in advancing the rights and welfare of People with Disabilities in the Philippines. These organizations provide services such as job fairs and information and computer technologies for the education and employment of People with Disabilities (Fermin, 2003b). The government coordinates these activities and provides limited financial and technical assistance. Self-employment represents one of the more promising programs for People with Disabilities in the Philippines, in light of the country’s scarce resources, high unemployment, and high underemployment. NGOs and cooperatives (funded partially by international agencies) provide training, business consultation, grants, and loans to income-generation projects for People with Disabilities, particularly women and Indigenous people. Access to capital (micro-credit) is critical. Community-based rehabilitation, in which volunteers reach out to People with Disabilities in their neighborhoods, appears to be another successful initiative in the Philippines. With the help of community members and NGOs, People with Disabilities receive assessments, early intervention, medical and nutritional guidance, some special education training, access to small loans, employment with local families and business enterprises, and assistance in developing small income-generating projects (Harris, 1997; Ilagan, 1998; Inciong, 1998). While the government provides some assistance, the bulk of the work takes place at the grassroots level.

SUMMARY AND CONCLUSIONS In the United States, as well as in Kenya and the Philippines, there are commonalities among People with Disabilities as a result of their disability, race, and class. People with Disabilities are less likely than their counterparts without disabilities to find employment, or when they do, the work they find is limited and typically pays less. Class issues, particularly poverty, magnify the difficulties they encounter. Generally, poverty 1. increases people’s likelihood of obtaining a disability, 2. decreases their ability to deal effectively with their disabilities (much less advance their lives), and 3. limits their access to health services, education, and employment opportunities. The less economically developed the country, the more these issues are highlighted. Yet poverty generally has a more significant impact on People with Disabilities from non-European backgrounds in many nations.

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The more economically developed the country, the more resources in general are available to People with Disabilities. These resources would include better testing and diagnosis, access to health care, academic resources and programs, and governmental funding such as social security, disability, and welfare benefits. The poor and People with Disabilities in more economically developed countries tend to have a greater access to resources than their counterparts in less economically developed nations. Even People with Disabilities from the upper classes in less economically developed countries might not have the same access and institutional benefits with comparable services as their counterparts in more economically developed countries. In more economically developed countries, the issues of People with Disabilities tend to be centered on accessibility and equality. In less economically developed countries, the issue is survival. Some areas that could be targeted to improve the situation worldwide would be to focus on health, education, and employability. In the area of health, prenatal care along with early detection, diagnosis, and intervention for health concerns are extremely important. The World Health Organization (2008) advocates that governments develop programs for early diagnosis, followed by assessment and treatment, to prevent or reduce disabling conditions. Minimal health care for less affluent people is critical. Even today, many people in less industrialized regions such as Africa die from illnesses and infections that are no longer considered problems in more industrialized countries. Minimal health care reduces the incidence and severity of disability. Moreover, less technologically advanced countries such as the Philippines and Kenya tend to have less precise means of classifying disabilities (e.g., neurological scans, measures of specific learning disabilities). There is a need for better diagnosis to identify certain types of disabilities and provide appropriate remediation and intervention programs. Otherwise health and learning development could be disrupted. Generally, less economically developed countries face the challenge of improving the quality and accuracy of disability data. Without reliable information, it is difficult to fully understand the scope of disability issues, build adequate support for funding and programs, and track progress. To compound this, disability issues often receive comparatively less attention in less economically developed nations that have to struggle with a multitude of other issues, such as high unemployment and underemployment, political instability, armed conflicts, natural disasters, and general health concerns. In the area of education, early detection and intervention for learning disabilities represent a key first step. There should also be accommodations for disabilities, both physical and cognitive, to meet students’ educational needs. Strengths of People with Disabilities could be identified early, and their skills in these areas could be developed. In the area of employability, employers should be encouraged to hire and accommodate People with Disabilities. Stereotypes and other myths can be reduced by providing clear information about skills and attitudes of People with Disabilities. There is some encouraging evidence in the United States as well as other countries indicating that employers who have hired People with Disabilities have found that they produce higher quality work and are more


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motivated and loyal than many individuals without disabilities. Employers should be encouraged to create work environments where there is more acceptance of disability among employees, and those who do should be recognized so that more organizations will follow suit. Governments should be able to offer incentives to employers who hire People with Disabilities with minimal bureaucracy (Kono, 2002). Another option that is particularly useful for less industrialized countries is self-employment, where micro-financing for small businesses can be obtained from the government or other sources. In addition, community-based rehabilitation and support programs should be supported. When communities are involved in assisting their Members with Disabilities, there tends to be greater involvement and commitment. This collaboration also helps reduce the burden on the government as the sole provider of funding and services. Indeed, one interesting way to think about addressing the issues of disability and employment is to address the central issue of poverty. Community efforts can be focused on raising the general socioeconomic level of the community by involving People with and without Disabilities working together on various levels. Much can be learned from the example of traditional groups such as the Maasai, who do not classify individuals as disabled but instead recognize their ability to provide various services based on their functionality. Among the Maasai, People with Disabilities are not stigmatized but made to feel like contributing members of the community. This perspective of community and collaboration can go a long way toward enhancing the plights of poor people with and without disabilities and allows many segments of the population to work together for a common good.

NOTES 1. There are a number of terms that have been used to describe less affluent countries, including “developing,” “poor,” and “Third World.” However a term like “developing” could be viewed as inaccurate or inappropriate because some countries have actually experienced prolonged periods of economic decline; meanwhile terms such as “poor” and “Third World” could be viewed as uncomplimentary and derogatory, especially as many of these countries have abundant natural resources as well as rich cultural and spiritual traditions, though colonization may have had a decimating impact on these societies and continues to exert contemporary ramifications. In this chapter, these countries will be referred to as “less economically developed” or “less industrialized” in an attempt to use more objective terminology consistent with that used by international economic agencies, such as the International Monetary Fund. 2. See also “Disability in Kenya: A Situational Analysis,” Chapter 20 in volume 3.

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CHAPTER 11

Youth with Intellectual Disabilities in Foster Care: Examining Accompanying Risks and Service Outcomes Crystal L. Cederna, Melissa Palguta, Jacqueline Remondet Wall, and Steven M. Koch

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n the United States, between 30 and 40 percent of youth placed in foster care receive special education services (National Collaboration on Workforce and Disability, 2007; Zetlin & Weinberg, 2004). In addition, 20 percent of youth placed in foster care settings are noted to have intellectual challenges, such as those associated with developmental disabilities and mental retardation (Child Welfare League of America, 2007). Along a similar vein, African American youth are overrepresented in children placed in out-of-home settings and in those youth receiving special education services for intellectual disabilities (Harry & Klingner, 2006; Hill, 2006, 2007). However, little is published about youth with intellectual disabilities in foster care, and even less is offered about youth with intellectual disabilities in foster care who are African American (Ebersole & Kapp, 2007). In this chapter, we summarize the literature on youth with intellectual disabilities and other frequently related risk factors in foster care. Specifically, we provide a programmatic case study to present the relationship between risk factors and outcomes that compares youth with test scores suggesting intellectual challenges to those of average ability. We focus on issues investigated in our study and highlight those identified in research literature—including African American ethnicity and gender—that are associated with greater frequency of foster care placement and poor outcomes. We conclude with recommendations for program development to facilitate success for youth in the foster care system. We suggest ways of incorporating the family into care, utilizing the family’s natural strengths, and providing care associated with positive outcomes.

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PLACEMENT IN FOSTER CARE In the United States, foster care is defined as “24-hour substitute care” provided outside a child’s home. Foster care placements occur when children are found to be at risk in their own homes, most often due to child abuse and neglect (Harden, 2004; Twigg, 2006). Although definitions vary from state to state, the Child Abuse Prevention and Treatment Act (CAPTA) (Public Law 93-247, 1974) and the Keeping Children and Families Safe Act of 2003 (Public Law 108-36) provide minimum standards for defining abuse and neglect. Further illustrated by the U.S. Department of Health and Human Services (DHHS), abuse and neglect is characterized as “any recent act or failure to act on the part of a parent or caretaker which results in death, serious physical or emotional harm, sexual abuse or exploitation; or an act or failure to act which presents an imminent risk of serious harm” (U.S. DHHS, 2006, 2007). During the U.S. federal fiscal year 2005, the most recent year for which complete data are readily available, approximately 317,000 youth were placed in foster care. At the end of the year, a total of 513,000 youth were in foster care (U.S. DHHS, 2006). Once foster care is deemed appropriate, youth become the responsibility of the government and are placed in the care of other nonparental adults. The most frequently established goal of foster care placement is the provision of temporary support for children until they can be returned safely to their parents without further risk of harm. If returning home safely is judged not to be possible, parental rights may be terminated and children may be adopted. However, children may remain in foster care until they reach the age of majority and become emancipated. Foster care often involves placement with relatives (i.e., kinship care) or another family (i.e., nonkinship care). However, it can also include placement in an alternative residential setting. These settings range from small, “homelike” facilities (e.g., group homes) to those that are more institutional (e.g., residential care centers) in nature. Some foster care placements are more specifically termed “therapeutic foster care,” to indicate that additional services, such as behavior management or therapy, are provided to meet the child’s individualized needs. Even though placement type (e.g., residential care verses foster home care) has been associated with different levels of behavior problems in youth, those in care often demonstrate a range of behavioral and mental health needs (Curtis, Alexander, & Lunghofer, 2001). All types of placement will be referred to as foster care in this chapter, unless the type of placement is salient to the discussion of placement risks or service outcomes.

DISABILITY AND FOSTER CARE Estimates suggest that one third to one half of youth in foster care placement have a disabling condition (Hanley, 2002; United Cerebral Palsy and Children’s Rights, 2006). Specific conditions identified in foster care include cognitive and academic challenges (e.g., intellectual disability), emotional and behavior problems (e.g., psychiatric concerns), and physical health concerns

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(e.g., special medical needs) (Romney, Litrownik, Newton, & Lau, 2006). For example, the U.S. DHHS (2006) report identified that risk factors for foster care placement included known disability (close to 8 percent of the sample), behavior problems (3.2 percent), and “emotional disturbance” (1.9 percent). The rates of disability are likely to be underrepresented because youth may not undergo a comprehensive assessment during intake processes when entering care. Maltreatment of youth is the primary factor in foster care placement and children with disabilities who have been maltreated are at significant risk of placement. In one study conducted within the public school system, a 31 percent prevalence rate was identified for maltreatment in youth with a disability verses a 9 percent prevalence rate for youth who were not identified as disabled (Sullivan & Knutson, 2000). The rates for maltreatment were 3.4 times higher for youth with a disability. This increased risk for abuse and neglect has also been found by other researchers (Horner-Johnson & Drum, 2006). Although there are controversies within the field as to why this is the case (e.g., does the greater level of care commonly associated with disability lead to the greater incidence of abuse, or is being born into a family with inherent risks more associated with the presence of a disability), it is evident that youth with intellectual disabilities are at greater risk for placement and are likely to remain in care for longer than youth without disabilities.

PROGRAMMATIC CASE STUDY The Indiana Association of Residential Child Care Agencies, an organization of residential care agencies, was founded in 1944. As member agencies expanded the array of services they provided to children and families, such as foster care, home-based and outpatient services, the organization changed its name to IARCCA, an Association of Child and Family Services (IARCCA). Both IARCCA and its current membership of 112 agencies have maintained a focus on providing quality care for the children and families they serve. For the past decade, this focus has included a systematic monitoring of programmatic outcomes. IARCCA began to study treatment outcomes for the children and families served by its member agencies in 1998 through the IARCCA Outcome Measures Project (hereafter referred to as the Project). The Project is more fully described in another publication (Wall et al., 2005). To better understand outcomes for youth placed into care, studies have been performed using data from the Project, examining risk factors identified at program entry and how these risks relate to outcomes (Jackson-Walker, Wall, & Minnich, 2003; Koch & Wall, 2005; Wall & Minnich, 2004). Factors including gender, age, ethnicity, length of stay, and referral source have been investigated and found to be associated with the outcomes of youth in foster care placement. For example, youth with histories of prior physical or sexual abuse have been noted to be at greater risk for being discharged into a more restrictive placement than their foster home. Although these initial studies examined multiple factors, they did not examine the presence of intellectual disability as a risk.

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In a more recent examination, primarily examining intellectual status and outcomes on data from the Project (Koch, Cederna, & Wall, 2007), youth with average or near-average intelligence, as measured through the administration of standardized intellectual assessments (i.e., IQ scores above 85) were compared to youth with test scores suggesting the presence of an intellectual disability (IQ scores of 70 or lower). The proportions of risk factors presented by youth with intellectual disability were compared to the proportions of risks presented by youth with average intellectual abilities. In addition, the outcomes obtained by these two different groups of youth were examined for disparities. Analyses were conducted using a sample of youth placed into and discharged from foster care programs (including foster care and residential treatment) between 2003 and 2005. Only youth for whom intellectual testing was provided were included for these analyses, resulting in a total sample size of 576, with separation into groups as follows: average intelligence (IQ over 85), n = 446, and intellectual disability (IQ 70 or below), n = 130. Youth were classified into these groups solely based on the results of standardized intellectual testing (i.e., in the absence of information related to adaptive functioning or any formal diagnosis of intellectual disability). To identify if youth with an intellectual disability were placed into care with more significant risk factors, demographic, child-specific, parent-specific, and trauma-related factors were examined. Youth classified with an intellectual disability were found to be somewhat younger than those with average intelligence test scores, more likely to be female, and less likely to be European American. Youth with intellectual challenges were more likely to have been recipients of special education than youth whose test scores suggested normal intellectual functioning. They were also more likely to have been in fewer out-of-home placements than youth with average intelligence. Youth with IQ test scores in the intellectual disability range were also more likely than youth with average test scores to have been sexually abused or neglected. Last, youth with intellectual disability were less likely to come from homes where a parent was noted to abuse substances than were youth who came from homes where their parents were not known to abuse substances. No proportional differences were seen in the other risk factors investigated. To examine outcomes between youth with test scores suggesting average abilities and those with intellectual disability for disparity, various outcomes at discharge and six months postdischarge follow-up were examined. There were no statistically significant differences at discharge for clinical functioning of the child or the family, length of stay in the program, rates of successful placement outcomes, education, or employment. In addition, there were no significant differences six months after discharge for rates of education, court involvement, or education when African American and European American youth were compared. The only statistically significant difference was identified between educational outcomes at six-month follow-up for these two groups of youth. Youth with lower IQ test scores were more likely to experience negative educational outcomes at the six-month follow-up than those whose obtained IQ scores were in the average range. When the sample was separated by intellectual disability, gender, and ethnicity, few statistically significant differences were noted. Although this may


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in part be due to sampling or the methods of assessment (e.g., follow-up at six months might not reflect long-term changes) or analysis, these findings may also reflect that foster care placement yields benefits to youth who enter with multiple risk factors. Specifically, the lack of differences may be reflective of the type of care that was provided to these youth, a variable that was not assessed in the program evaluation project. In sum, results from this investigation suggest that although youth enter into care with substantive differences, there were limited differences in outcomes both immediately following discharge and at follow-up six months later. Although further investigation of these relationships is warranted, these analyses may represent the value of identifying and providing appropriate supports and treatment for children with an intellectual disability and accompanying risk factors that have been shown to impact foster care placement and outcomes.

Intellectual Disability in Foster Care Although variations in diagnostic terminology exist, there is general acknowledgment that intellectually disabling conditions include two fundamental criteria: 1. significant deficits in intellectual functioning and 2. significant deficits in adaptive skills (American Association on Mental Retardation, 2002; American Psychiatric Association [APA], 2000; World Health Organization [WHO], 2001, 2003). In addition, two of the most frequently relied on classification systems for identifying intellectual disability, the International Classification of Diseases and Related Health Problems (ICD-10; WHO, 2003) and Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR; APA, 2000), utilize terms that denote the severity of intellectual, and in most cases, adaptive impairment associated with intellectual disability. This becomes particularly important given the difference in clinical and functional needs of children with varying severities of intellectual disability (Batshaw & Shapiro, 2002). Moreover, investigations consistently demonstrate that the severity of intellectual disability is associated with differential outcomes in foster care (Batshaw & Shapiro, 2002; Felce, Lowe, & Jones, 2002), an important consideration to make when planning treatment goals and evaluating outcomes. Findings in the literature are mixed concerning the potential impact of intellectual disability on foster care placement and outcomes. Although there is general agreement that the presence of intellectual disability is related to risk factors for placement in foster care, there are disagreements about the impact of intellectual disability on treatment effectiveness. In a review of treatment outcomes for individuals with an intellectual disability in foster care, Heller (2002) suggested that outcomes were influenced by the severity of intellectual limitations associated with intellectual disability. Specifically, she found that the higher the intellectual functioning, the more favorable the outcomes were in the domains of adaptive behavior, self-determination, community participation, and use of social networks.

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Other researchers have also examined factors related to placement outcomes for youth with intellectual disabilities. Romney and colleagues (2006) investigated whether the presence of emotional/behavioral, physical, cognitive, or communicative disabilities as identified by the caregiver were predictive of placement status two years later. Romney and associates found that children with a cognitive disability (identified as the presence of mental retardation or developmental delay) were less likely to be reunified with their family of origin than those without a cognitive disability. Instead, children with cognitive disabilities were over four times more likely to remain in nonkinship foster care and over five and a half times more likely to be adopted. Thus, disability, and in particular cognitive disability, were both related to a lower probability of a child’s reunification with their family of origin.

DISABILITY AND OTHER RISK FACTORS Studies have demonstrated several risk factors associated with foster care placement and poor outcomes, including characteristics of the child him- or herself, parental problems, and environmental factors (Harden, 2004; Twigg, 2006). When an intellectual disability is paired with these risk factors, the strength of associations to placement and treatment outcomes increase significantly (e.g., Beadle-Brown et al., 2000; Becker, Jordan & Larson, 2007; Emerson, Robertson, & Wood, 2005; Hanley, 2002).

Child-Related Risk Factors Although youth with an intellectual disability and mild to moderate behavioral or emotional difficulties have been shown to succeed in less restrictive placements (e.g., kinship care versus secure residential facilities), Laan, Loots, Janssen, and Stolk (2001) found that youth with more severe behavioral difficulties in addition to an intellectual disability (e.g., significant personality or psychiatric problems) do less well in similar placements and are particularly prone to poor outcomes. In addition, older youth, those with additional physical and/or mental impairments, and those exhibiting problematic behaviors are less likely to be successfully reunified with their family of origin or adopted following foster care placement. For example, Becker et al. (2007) found that children who were older or had mental impairments were likely to stay in foster care longer than younger and nondisabled children. Studies have consistently found that minority youth, particularly African American youth, are overrepresented in foster care (U.S. DHHS, 2006; Wall & Koch, 2007), child welfare and juvenile justice systems, independent of the crimes committed or problems displayed by the child (e.g., Crane & Ellis, 2004; Green, 2003; Hill, 2006; Hines, Lemon, Wyatt, & Merdinger, 2004; Wall & Koch, 2007). In addition to disproportionate placement in foster care, studies have found disparities in the services received and in treatment outcomes on the basis of ethnicity, with minority groups being underserved (e.g., Becker et al., 2007; Crane & Ellis, 2004; Green, 2003). Hines and colleagues (2004), for example, found that minority families received fewer


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services and had poorer outcomes in the child welfare system than European American families. African American children were also less likely to leave foster care due to reunification with family or adoption and more likely to enter the juvenile justice system following foster care (Anderson, 2003). In sum, European American children appear more likely to receive appropriate treatment and counseling (Lu et al., 2004), reunify with family or relatives (Harris & Courtney, 2003; Schuck, 2005), or be permanently adopted if family reunification is not possible (Hill, 2006) when compared to African American children. The proportion of suspected child maltreatment cases reported is also significantly higher for African American families than for European American families (Schuck, 2005). Despite the ethnic disproportionality in cases reported, Schuck (2005) found that the number of substantiated cases of abuse was significantly less for African American children than for European American children. Even so, it has been noted that African American children are removed from their homes with greater frequency, incarcerated more frequently for delinquent behavior (Crane & Ellis, 2004; Hines et al., 2004), and more frequently labeled as mentally or educationally retarded (cited in Hill, 2006; Salend, Garrick-Duhaney, & Montgomery, 2002). Given the risk of less favorable outcomes associated with both ethnicity and intellectual disability, it seems plausible that in combination, these two risk factors may increase the likelihood of poor outcomes for children. This hypothesis has gained some support in the literature. Becker et al. (2007) demonstrated that when coupled with the presence of an intellectual disability, being an ethnic minority group member decreased the likelihood of successfully leaving foster care. Studies suggest there are inequities in treatment and outcomes based on gender, but that both genders experience disadvantage of some kind (Laan et al., 2001). Thus, although it has been noted that girls more frequently enter foster care with higher levels of preplacement risk (Smith, 2004) including sexual abuse (Leve & Chamberlin, 2007), there is limited evidence that gender is an independent risk factor for foster care placement. Even so, Hornick, Philips, and Kerr (1988) concluded that females were more likely than males to be placed in foster care and less likely to receive appropriate services. When considered in conjunction with the presence of intellectual disability, Avery (1999) found that boys were more likely than girls to experience delays in permanent adoptive placement. Given the disparities and lack of studies investigating the impact of gender and intellectual disability on placement and outcomes of foster care, more extensive research on the topic is needed.

Family and Community Factors Youth placed in foster care are more likely to come from homes where parents have difficulties, such as a history of substance abuse, psychiatric diagnoses, or incarceration (Berger, 2004; Hayward & Depanfilis, 2007; Schuck, 2005). Becker et al. (2007) found that parental substance abuse can place a child at risk of experiencing less favorable outcomes. More specifically, Hines et al. (2004) estimated that one to two thirds of substantiated child maltreatment

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reports involve parents who abuse substances. Additionally, youth in foster care are more likely to come from a single-parent household and from lower socioeconomic communities where poverty, crime, violence, and substandard living conditions are more common. Most of the factors that predispose youth to placement in foster care are found more often in families with low socioeconomic status (SES), including higher rates of parental and youth incarceration, lower overall rates of parental educational achievement, higher rates of mental illness, and more limited access to necessary treatment (Becker et al., 2007; Cahn, 2002; Green, 2003; Hines et al., 2004). Green (2002) also noted a correlation between low SES and single-parent households and suggested the combination of being in a single-parent household with low SES could increase the risk of decreased availability of supervision, increased exposure to negative peer pressure, and increased crime rates in the child’s neighborhood. Furthermore, Hanley (2002) noted that young children’s health and development are compromised by poverty, parenting difficulties, abuse and neglect, prenatal exposure to illicit drugs or alcohol, and exposure to toxic substances. Hanley also explains that young children’s health and development are compromised by poverty and associated factors, thereby increasing the likelihood of disability, foster care placement, and associated outcomes. Family structure impacts foster care placement and outcomes in varying ways. Llewelln, McConnell, Thompson, and Whybrow (2005) conducted interviews 12 to 18 months apart, with 81 parents of children with disabilities who also had other dependent family members. Parents reported difficulty balancing the demands of caring for their child with a disability and maintaining other family responsibilities. They also found that parents were more likely to consider out-of-home placement when the imbalance between these two demands increased, when other family responsibilities increased and there was difficulty integrating the child with the disability into daily life activities. In sum, having a child with a disability, particularly when there are other dependent family members, can impact a family’s ability to care for children and increase the likelihood of foster care placement. Once placed in foster care, structure of the family providing care has been associated with differential outcomes of youth. In one study, children in nonkinship foster care were more likely to exhibit clinically significant behavioral and emotional difficulties than those in kinship care (Keller et al., 2001). When children in kinship foster care were compared with children in the general population, no differences in behavioral and emotional outcomes were present. Together, these findings suggest that the placement of youth with nonfamily members is a risk factor for significant behavioral and emotional difficulties, while placement with other family members produces a level of risk no greater than living in an intact home. Given that the presence of an intellectual disability can enhance outcomes related to other risk factors, this finding warrants efforts to place youth with family members when possible. Exposure to violence has been associated with foster care placement and negative outcomes. Owen, Thompson, and Kaslow (2006) conducted a study on the effect of domestic violence on children. Their results showed that children whose mothers had experienced violence had significantly higher rates


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of emotional and behavioral problems on standardized scales assessing these difficulties. In addition, exposure to violence in one’s neighborhood, also linked to low SES, has been noted to correlate with higher rates of delinquency and youth incarceration. Preski and Shelton (2001) found that there were significant risks associated with witnessing violence in the community, as youth who had seen violent behaviors were more likely to be placed in a more restrictive juvenile detention facility than those who had not seen violence.

Protective and Favorable Outcome-Promoting Factors Although there are many factors that can place a child at risk, research has also indicated several family, community, and treatment factors that serve a protective function and/or promote favorable service outcomes. Among these, family and community support are frequently related to improved child outcomes such as better community integration (Ping-Ying, Sing-Fai Tam, & Wai-Kwong Man, 2006), an increased likelihood of the birth family being able to keep and appropriately care for their child (Llewelln et al., 2005), and/or an increased likelihood of attaining successful permanent placement (Avery, 1999; Laan et al., 2001). When the treatment goal is reunification, including the family in the child’s care has shown some promise in increasing success rates (Sunseri, 2004; Wulczyn, 2004). Similar to its favorable effect on reunification, the level of family involvement during foster care placement has been shown to directly relate to the level of positive outcomes following foster care; thus, the greater a family’s involvement in activities such as parent preparation programs (Avery, 1999), skill building, instruction in parenting skills (Laan et al., 2001), and intensive family therapy, the more positive the treatment outcomes (Ping-Ying et al., 2006). Additionally, when youth in foster care receive regular visits from their family, reunification is generally more stable. For example, when compared to youth with limited family interactions during foster care placement, youth receiving regular family visits engaged in fewer behaviors after discharge that warranted a return to foster care (Landsman, Groza, Tyler, & Malone, 2001). When family members with known risk factors for poor outcomes are identified early and these factors are addressed in care, outcomes have also been shown to improve. For example, factors including parental substance use, parent mental health problems, poor housing, and single-parent families have been associated with lower rates of stable placement and higher rates of re-entry into the foster care system (Green, 2002; Hayward & DePanfilis, 2007). In addition, since parent behaviors are the foundation on which reunification decisions are made, ensuring parents understand treatment requirements including safety issues in the home, compliance with scheduled visitations, and following through with referrals for treatment have been shown to have a positive impact on reunification. Strength-based approaches to treatment have also been shown to relate to positive outcomes. For example, identification and utilization of social supports held by the family has been associated with higher rates of successful

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reunification (Romney et al., 2006). Whether or not reunification is the identified permanency goal, providing services that address a child’s specific needs is critical to improving well-being (Bass, Shields, & Behrman, 2004; Ogden & Hagen, 2006). To do so, child-related difficulties present at the onset of care must be identified and matched with services that when provided can capitalize on the strengths of the youth and meet their individual needs. It is therefore important that children receive evaluations of health—including developmental and emotional/mental health—from the onset of service (Bass et al., 2004). Particular services that have been noted to demonstrate benefit across individualized circumstances include caregiver/family education about the child’s abilities (Laan et al., 2001; Llewelln, et al., 2005), financial support (Green, 2002), and the provision of services that build on the youth and family successes rather than limitations (Bass et al., 2004). Most of the risk factors mentioned have been shown to independently relate to placement in foster care and/or negative outcomes for youth with intellectual disabilities. Children rarely present with only one risk factor. Rather, most children present with a variety of child, family, and/or environment related factors. Similarly, children can have a variety of protective factors available to improve outcomes including family and community involvement, strength-based treatments, parental education, and appropriate intervention. Thus, accurate evaluation of each child at the onset of care is necessary to identify his or her unique strengths and areas of need and construct an individualized plan of care accordingly.

CONCLUSIONS AND FUTURE DIRECTIONS OF CARE Foster care placement determinations, the provision of adequate services, and treatment outcomes for children with intellectual disability are negatively impacted even further when paired with other risk factors both specific to youth (e.g., emotional and behavioral difficulties, gender, ethnicity) and external to them (e.g., parent problems, poverty, family structure, violence, and crime). Findings of the programmatic case study highlight the importance of identifying specific services most beneficial to each youth with an intellectual disability and other risk factors to improve treatment outcomes and minimize negative outcomes for youth following foster care. Awareness and utilization of child protective factors should also be a focus of future treatment. Increased family involvement, early identification of risk factors, and the use of strength-based approaches have all shown to relate to positive outcomes. Targeted interventions can be developed within foster care to meet goals for reunification and increase the likelihood of success. Providing training and education targeted at improving parenting skills and understanding the unique needs of a child with an intellectual disability may aid in this goal, as well as in assisting caregivers living with additional substantial stresses. Increased community, familial, child, and educational supports so children can stay in the home (least restrictive environment) as much as possible are associated with positive outcomes (Merrick, Merrick, & Kandel, 2006).


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Other researchers have supported offering both training and respite to caregivers and treatment staff as ways to enhance their ability to offer substitute care (Chadwick, Beechman, Piroth, Bernard, & Taylor, 2002; McGill, Papachristoforou, & Cooper, 2006). Similarly, having caregivers and staff who understand the diversity of values, family structures, and languages and who provide culturally competent care in an evidence based manner is critical when intervening with persons and to provide effective interventions (APA, 2003; Farber & Maharaj, 2005). This can be accomplished by offering opportunities for enhanced diversity in the organization, as well as organizational interventions that educate staff on the relationship between the organization and individuals they serve (McPhatter & Ganaway, 2003; Nybell & Gray, 2004). Reports discussing program outcomes have identified many factors that appear related to positive outcomes for youth entering foster care when intellectual disabilities are evident. These include early identification and development of education based on individual strengths that accommodate weaknesses, with extra supports used as needed (Romney et al., 2006). Some writers support the use of smaller group or family style residences (Lee, 2008) and integrated mental health service (Hall, Parkes, Samuels, & Hassiotis, 2006), while others (Heller, 2002) report that use of home-like architectural features and assistive technology, as well as organizational policies that promote individualization and person-centered planning, are associated with successful outcomes. A final suggestion of recruiting foster parents specifically for caring for youth with disabilities, and training parents to advocate on the behalf of their children, resolve issues and seek needed services has also been noted (Farber & Maharaj, 2005; United Cerebral Palsy and Children’s Rights, 2006). The goal of all of these interventions is to provide the best quality of care to children and their families.

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Batshaw, M. L., & Shapiro, B. K. (2002). Mental retardation. In M. L. Batshaw (Ed.), Children with disabilities (5th ed.) (pp. 287–306). Baltimore: Brookes. Beadle-Brown, J., Murphy, G., Wing, L., Gould, J., Shah, A., & Holmes, N. (2000). Changes in skills for people with intellectual disability: A follow-up of the Camberwell cohort. Journal of Intellectual Disability Research, 44, 12–24. Becker, M. A., Jordan, N., & Larsen, R. (2007). Predictors of successful permanency planning and length of stay in foster care: The role of race, diagnosis and place of residence. Children and Youth Services Review, 29, 1102–1113. Berger, L. M. (2004). Income, family structure, and child maltreatment risk. Children and Youth Services Review, 26, 725–748. Cahn, N. (2002). Race, poverty, history, adoption, and child abuse: Connections. Law & Society Review, 36, 461–488. Chadwick, O., Beechman, J., Piroth, N., Bernard, S., & Taylor, E. (2002). Respite care for children with severe intellectual disability and their families: Who needs it? Who receives it? Child and Adolescent Mental Health, 7, 66–72. Child Welfare League of America. (2007). Children of color in the child welfare system. Retrieved June 27, 2007, from www.cwla.org/programs/culture/disproportion atestatement.pdf. Crane, K. D., & Ellis, R. A. (2004). Benevolent intervention or oppression perpetuated: minority overrepresentation in children’s services. Journal of Human Behavior in the Social Environment, 9, 19–38. Curtis, P. A., Alexander, G., & Lunghofer, L. A. (2001). A literature review comparing the outcomes of residential group care and therapeutic foster care. Child and Adolescent Social Work Journal, 18, 377–392. Ebersole, J. L., & Kapp, S. A. (2007). Stemming the tide of overrepresentation: Ensuring accurate certification of African American students in programs for the mentally retarded. School Social Work Journal, 31, 1–16. Emerson, E., Robertson, J., & Wood, J. (2005). Emotional and behavioral needs of children and adolescents with intellectual disabilities in an urban conurbation. Journal of Intellectual Disability Research, 49, 16–24. Farber, M. L., & Maharaj, R. (2005). Empowering high-risk families of children with disabilities. Research on Social Work Practice, 15, 501–515. Felce, D., Lowe, K., & Jones, E. (2002). Association between the provision characteristics and operation of supported housing services and resident outcomes. Journal of Applied Research in Intellectual Disabilities, 15, 404–418. Green, M. Y. (2002). Minorities as majority: Disproportionality in child welfare and juvenile justice. Children’s Voice, 11, 8–13. Green, M. Y. (2003). Balancing the scales; targeting disproportionality in child welfare and juvenile justice. Children’s Voice, 12(1), 6–10. Hall, I., Parkes, C., Samuels, S., & Hassiotis, A. (2006). Working across boundaries: Clinical outcomes for an integrated mental health service for people with intellectual disabilities. Journal of Intellectual Disability Research, 50, 598–607. Hanley, B. (2002). Intersection of the fields of child welfare and developmental disabilities. Mental Retardation, 40, 413–415. Harden, B. J. (2004). Safety and stability for foster children: A developmental perspective. Children, Families and Foster Care, 14(1). Retrieved January 9, 2008, from www.futureofchildren.org/usr_doc/3-harden.pdf. Harris, M. S., & Courtney, M. E. (2003). The interaction of race, ethnicity, and family structure with respect to the timing of family reunification. Children and Youth Services Review, 25, 409–429. Harry, B., & Klingner, J. K. (2006). Why are so many minority students in special education? Understanding race and disability in the schools. New York: Teachers College Press.


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Hayward, R. A., & DePanfilis, D. (2007). Foster children with an incarcerated parent: Predictors of reunification. Children and Youth Services Review, 29, 1320– 1334. Heller, T. (2002). Residential settings and outcomes for individuals with intellectual disabilities. Current Opinion in Psychiatry, 15, 503–508. Hill, R. B. (2006). Synthesis of research on disproportionality in child welfare: An update. Washington, DC: Center for the Study of Social Policy. Hill, R. B. (2007). An analysis of racial/ethnic disproportionality and disparity at the national, state and county levels. Casey-CSPP Alliance for Racial Equity in child welfare. Retrieved January 4, 2008, from www.cspp.org/major_intitatives/ racialEquity.html. Hines, A. M., Lemon, K., Wyatt, P., & Merdinger, J. (2004). Factors related to the disproportionate involvement of children of color in the child welfare system: A review and emerging themes. Children and Youth Services Review, 26, 507–527. Horner-Johnson, W., & Drum, C. E. (2006). Prevalence of maltreatment of people with intellectual disabilities: A review of recently published research. Mental Retardation and Developmental Disabilities Research Reviews, 12, 57–69. Hornick, J. P., Phillips, D. M., & Kerr, N. (1988). Gender differences in behavioral problems of foster children: Implications for special foster care. Presented at Second North American Conference on Treatment Foster Care, Calgary, AB. Jackson-Walker, S., Wall, J. R., & Minnich, H. M. (2003). IARCCA Outcome project special report: An analysis of outcome measures for children in residential care, transitional living, and foster care. Indianapolis, IN: IARCCA. Keller, T. E., Wetherbee, K., Le Prohn, N. S., Payne, V., Sim, K., & Lamont, E. R. (2001). Competencies and problem behaviors of children in family foster care: Variations by kinship placement status and race. Children and Youth Services Review, 23, 915–940. Koch, S. M., Cederna, C. L., & Wall, J. R. (2007, November). Risk factors for youth with intellectual disabilities in foster care in Indiana. Poster session presented at the Annual Conference of the Association of University Centers on Disability, Washington, DC. Koch, S. M., & Wall, J. R. (2005). IARCCA outcome project special report 2005: An analysis of variables related to intake and discharge in residential care, foster care, transitional living, home-based day treatment, shelter care and crisis stabilization programs. Indianapolis, IN: IARCCA. Laan, N. M. A., Loots, G. M. P., Janssen, C. G. C., & Stolk, J. (2001). Foster care for children with mental retardation and challenging behavior: A follow-up study. British Journal of Developmental Disabilities, 47, 3–13. Landsman, M. J., Groza, V., Tyler, M., & Malone, K. (2001). Outcomes of familycentered residential treatment. Child Welfare Journal, 80, 351–379. Lee, B. (2008). Comparing outcomes for youth in treatment foster care and familystyle group care. Children and Youth Services Review, 30(7), 746–757. Leve, L. D., & Chamberlin, P. (2007). A randomized evaluation of multidimensional treatment foster care: Effects on school attendance and homework completion in juvenile justice girls. Research on Social Work Practice, 17, 657–663. Llewelln, G., McConnell, D., Thompson, K., & Whybrow, S. (2005). Out-of-home placement of school-age children with disabilities and high support needs. Journal of Applied Research in Intellectual Disabilities, 18, 1–6. Lu, Y., E., Landsverk, J., Ellis-MacLeod, E., Newton, R., Ganger, W., & Johnson, I. (2004). Race, ethnicity, and case outcomes in child protective services. Children and Youth Services Review, 26, 447–461.

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McGill, P., Papachristoforou, E., & Cooper, V. (2006). Support for family carers of children and young people with developmental disabilities and challenging behaviour. Child: Care, Health, and Development, 32, 159–165. McPhatter, A. R., & Ganaway, T. L. (2003). Beyond the rhetoric: Strategies for implementing culturally effective practice with children, families, and communities. Child Welfare Journal, 82, 103–124. Merrick, J., Merrick, E., & Kandel, I. (2006). Children with intellectual disability in residential care centers. Trends in Israel 1999–2004. International Journal of Adolescent Medicine and Health, 18, 653–657. National Collaboration on Workforce and Disability. (2007). Negotiating the curves toward employment: A guide about youth involved in the foster care system. Retrieved June 27, 2007, from www.ncwd-youth.info/intersection. Nybell, S. M., & Gray, S. S. (2004). Race, place, space: Meanings of cultural competence in three social service agencies. Social Work, 49, 17–26. Ogden, T., & Hagen, K. A. (2006) Multisystemic treatment of serious behaviour problems in youth: Sustainability of effectiveness two years after intake. Child and Adolescent Mental Health, 11(3), 142–149. Owen, A. E., Thompson, M. P., & Kaslow, N. J. (2006). The mediating role of parenting stress in the relation between intimate partner violence and child adjustment. Journal of Family Psychology, 20, 505–513. Ping-Ying Li, E., Sing-Fai Tam, A., & Wai-Kwong Man, D. (2006). Exploring the self-concepts of persons with intellectual disabilities. Journal of Intellectual Disabilities 10, 19–34. Preski, S., & Shelton, D. (2001). The role of contextual, child and parent factors in predicting criminal outcomes in adolescence. Issues in Mental Health Nursing, 22, 197–205. Romney, S. C., Litrownik, A. J., Newton, R. R., & Lau, A. (2006). The relationship between child disability and living arrangement in child welfare. Child Welfare, 85, 965–984. Salend, S., Garrick-Duhaney, L., & Montgomery, W. (2002). A comprehensive approach to identifying and addressing issues of disproportionate representation. Remedial and Special Education, 21(5), 289–299. Schuck, A. M. (2005). Explaining Black-White disparity in maltreatment: Poverty, femaleheaded families, and urbanization. Journal of Marriage and Family, 67, 543–551. Smith, D. K. (2004). Risk, reinforcement, retention in treatment and reoffending for boys and girls in multidimensional treatment foster care. Journal of Emotional and Behavioral Disorders, 12, 38–48. Sullivan, P. M., & Knutson, J. K. (2000). Maltreatment and disabilities: A population based epidemiological study. Child Abuse and Neglect, 24, 1257–1273. Sunseri, P. (2004). Family functioning and residential treatment outcomes. Residential Treatment for Children & Youth, 22, 33–53. Twigg, R. C. (2006). Withstanding the test of time: What we know about treatment foster care: A monograph on treatment foster care. Hackensack, NJ: Foster FamilyBased Treatment Association. United Cerebral Palsy and Children’s Rights. (2006, May 1). Forgotten children: A case for action for children and youth with disabilities in foster care. Retrieved December 21, 2007, from www.ucp.org/uploads/ForgottenChildrenFINAL.pdf. U.S. Department of Health and Human Services, Administration for Children and Families, Administration on Children, Youth and Families, Children’s Bureau. (2006). AFCARS report: Preliminary FY 2005 estimates as of September 2006. Retrieved January 2, 2008, from www.acf.hhs.gov/programs/cb/stats_research/ afcars/tar/report13.htm.


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U.S. Department of Health and Human Services, Administration for Children and Families, Administration on Children, Youth and Families, Children’s Bureau. (2007). Definitions of child abuse and neglect: State statutes series. Retrieved August 28, 2008, from www.childwelfare.gov/systemwide/laws_policies/statutes/ define.cfm. Wall, J. R., Busch, M., Koch, S. M., Alexander, G., Minnich, H., & Jackson-Walker, S. (2005). Accountability in child welfare services: Developing a statewide outcome evaluation program. Psychological Services, 2, 39–53. Wall, J. R., & Koch, S. M. (2007, April). Special report brief: Racial disproportionality and disparity for youth in out-of-home care (vol. 1, no. 2). Indianapolis, IN: IARCCA. Wall, J. R., & Minnich, H. M. (2004). IARCCA outcome project special report II: An analysis of variables related to outcome at discharge and follow-up in residential care, transitional living, foster care, and home-based programs. Indianapolis, IN: IARCCA. World Health Organization. (2001). International classification of functioning, disability and health. Geneva: Author. World Health Organization. (2003). International classification of diseases and related health problems, 10th revision. Geneva: Author. Wulczyn, F. (2004). Family reunification. Children, Families and Foster Care, 14(1). Retrieved January 9, 2008, from www.futureofchildren.org/usr_doc/6wulczyn.pdf. Zetlin, A. G., & Weinberg. L. A. (2004). Understanding the plight of foster youth and improving their educational opportunities. Child Abuse & Neglect, 28, 917–923.


CHAPTER 12

Mental Disorder, Disability, and Society David Pilgrim and Anne Rogers

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isability theory provides the basis for a new direction of analysis from which to understand the societal barriers faced by people with mental health problems in Western countries. Disability theory, drawing as it does on a social approach to disability, has the power to reorient analysis from a focus on the individual to the wider mechanisms and processes of social oppression, discrimination, and exclusion. Disability theory also has the capacity to illuminate the various social and economic restrictions and sources of disadvantage encountered by people with a diagnosis of mental illness. Although disability theorists have been criticised for adopting an oversocialized perspective, it does provide a corrective to the overly individualized perspective by situating problems in the social context and referring explicitly to processes of social invalidation. This perspective is important for all forms of disability, but in the case of mental health, another dynamic comes into play about the extent of social invalidation associated with people who, according to themselves or others, are mentally disordered. As Fabrega and Manning (1972) pointed out more than 25 years ago, “mental illness” is more stigmatizing than other conditions because it is not possible to disassociate the disability from the self or person. The very notion of “mentally disordered,” which is applied as a general term to cover those with a diagnosis of mental illness, personality disorder, or substance misuse, has the dubious implication that there is a readily definable fixed or stable notion of mental order. In this chapter, we examine the extent to which social forces determine mental health problems. Second, we consider lay and professional reactions to psychological difference.

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EPISTEMOLOGICAL STARTING POINTS In reviewing the nature of mental health problems, different views are scattered across communities of interest (i.e., professionals, patients and their significant others, politicians, researchers). Three views are addressed here. The first is medical naturalism (also referred to as psychiatric positivism), which is reflected in orthodox psychiatric theory and practice and was championed at the end of the 19th century by Emil Kraepelin. This assumes that mental disorders are separate naturally occurring, fixed phenomena (like gasses or type of metal) and are embodied in the individual who has “schizophrenia” or “depression.” This reflects an epistemic fallacy (i.e., that the world simply is what its investigators believe it to be at a moment in time) and is typical of naive realism in medicine and other uncritical expressions of natural science when applied to human science. The second view is social constructionism (i.e., where subject precedes object—the inverse of the first view). The work of Szasz (1961) was noted in this regard, though as we discuss later, his arguments may paradoxically legitimate one type of disability but not other forms. The third view, and the one we have taken in this chapter, is that there is a reality of distress and madness that can be studied, but we must proceed cautiously and skeptically at each step. This position of critical realism (e.g., Pilgrim & Bentall, 1998) suggests that knowledge about mental disorder is socially negotiated, thus supporting the arguments about context-specific social constructions, but also acknowledging there are stable features that can be examined. For example, we know that conditioned fear (i.e., anxiety states) is reportable not only in all societies but even across mammalian species. Similarly, misery can be invoked experimentally in animals (i.e., learned helplessness), but human beings attribute particular meanings to these states, meanings that are biographically unique and socially and historically situated. As for madness, it is readily recognized by social actors. However, the social value or disvalue that is attached to madness can vary. For example, on one hand, there is a relationship between depression and creativity and mania and industrious success and, on the other hand, a complete social discrediting of those with a diagnosis of schizophrenia.

SOCIAL FORCES AS DETERMINANTS OF MENTAL HEALTH PROBLEMS We use the notion of “social forces” here in a broad and inclusive way, which is consistent with a critical realist view of world. This approach insists that causes and meanings need to be understood together, rather than one or the other being privileged or discounted. We hope that our position avoids the opposition set up at times between naïve realists and radical constructivists (Rogers & Pilgrim, 2005). The former are naive about meanings and judgments that are inherently social. The latter insist that “everything is socially constructed,” thus displacing material reality as the dominant research focus and replacing it with the concept of ideas in action (discourses). The largest obstacle to our understanding of the social model in mental health research is biological reductionism—the strong tradition within

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orthodox psychiatry to reduce all mental health problems to brain diseases. In this sense, both physical and psychological disabilities are accounted for by the medical, rather than social model of disability. In the case of physical disability, the body is the testing ground for social order (the ability of the impaired person’s body to sense, communicate, and move in a way that befits a given role in society). Generally, this type of social judgment is not the initial consideration in relation to mental health problems. Instead, rule infractions (rather than role failure) are the first pressing concern in mental illness—the way people conduct themselves. Although clinicians may emphasize the presence or absence of mental disorder as a clinical government, it is the way people speak and act in context that determines a diagnosis (or formulation) of mental abnormality. Moreover, formally codified attributions of mental illness are usually preceded by lay attributions by the prospective patient or their significant others. Because mentally disordered patients are judged by themselves or others as being impaired in their ability to function, the social definitions of impairment and the social forces that impact on mental illness are both important.

Economic Deprivation Disadvantages typically associated with poverty, such as poor education, low pay or unemployment, poor neighborhoods, and poor living conditions, aggravate both physical and mental health (Fryers, Melzer, & Jenkins, 2000; Rogers & Pilgrim, 2003). Class position predicts both morbidity in its broadest sense and longevity in its specific sense. Not only do the poor consistently die younger, this pattern of early death is amplified in poor people who also have a psychiatric diagnosis (Knapp, 2001). Labor market effects are reliant on the presence or absence of governmentprovided income maintenance and on the circumstances in which a person becomes unemployed. In most developed countries, unemployed people obtain welfare payments. These payments ensure that poverty is relative, not absolute, and that resources are available to sustain food and shelter. In many developing countries, this safety net is absent. For example, Patel (2001) noted that in India during the 1990s, bonded low-paid farmers lost everything when a monsoon destroyed their crops. They were thrown into absolute poverty, and suicide levels dramatically increased. Some forms of unemployment may actually be linked to improvements in psychological well-being (for example, a good retirement package, inheriting wealth, or winning the lottery). Thus, although the absence of paid work is not inherently bad for mental health, the context of that unemployment is important to consider. The worst mental health is found not in unemployed people, but in those on low pay and with poor task control or on short-term contracts. This situation is sometimes called “inadequate employment” or “underemployment” (Dooley, Prause, & Ham-Rowbottom, 2000). The best mental health accrues from high wages, good task control, and permanent employment. Thus, unemployment may affect morale but work, especially poorly paid work, brings with it peculiar stressors, as well as low status and inadequate earnings. Low paid work leads to poverty in the domestic arena and, during work time, brings with it tedious and unfulfilling tasks.

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In the case of becoming unemployed, however, its effects can be compounded by multiple losses (Fryer, 1995). Identity for many is bound up with work roles; unemployment results in a loss of identity. Daily meanings are bound up with the routines of work, so unemployment can represent a loss of daily structure. For some, being unemployed is a source of shame. For those whose income level drops significantly, there is the direct impact of financial stress. Economic cycles create advantages and disadvantages to individuals. For example, one generation of young people might encounter a period of growth and can access the labor market readily. The next generation may be less fortunate. Those in insecure employment will be buffered from its effects during times of full employment, but in more economically depressed times, they will be very vulnerable (Kasl, Rodrigues, & Lasch, 1998).

Ecological Effects Environmental factors begin to affect current and future mental health status from the womb onward. For example, substances that cross the placenta can influence neurological development, which in turn can have a behavioral impact after birth. With regard to loss, abuse, and neglect, these contextual factors impinge on the developing child. The etiology of mental disorders remains controversial (Read, Agar, Argyle, & Aderhold, 2003; Whitfield, Dube, Felitti, & Anda, 2005), but environmentalists have argued that consistent benign child-rearing is at the center of positive adult mental health. In contrast, abuse, particularly sexual abuse, in childhood is highly correlated with contact with mental health services (Pilgrim, Rogers, & Bentall, in press). It has been known since the 1930s that psychiatric diagnosis is geographically distributed (Faris & Dunham, 1939). These early Chicago studies demonstrated that not only were poorer people more likely to have a psychiatric diagnosis, illness appeared more frequently in poorer areas. However, the ecological fallacy highlights that that not all people in poorer areas are poor, and not all are prone to mental health problems. Thus, ecological effects are evident, but where a person lives is not the only determinant of his or her mental health status. Urban life generally is more “psychonoxious” than rural life (Paykel, Abbott, Jenkins, Brugha, & Meltzer, 2000), not withstanding our knowledge about pockets of rural poverty. This effect is due to more social disorganization and environmental stressors (crime, vandalism, noise, litter, and motor traffic) in urban areas. In areas of concentrated poverty, the impact at the individual level is profound and negative. Not surprisingly, in these neighborhoods, there are raised levels of depression, anxiety, and substance misuse (Aneschensel & Succoff, 1996). Apart from the direct exposure to the external ambient hazards of stress in these local contexts, people are less likely to have regular supportive social networks, particularly if there is a high turnover of residence (Sampson, 1988). Some particularly deteriorated localities contain higher rates of presentation of depressive symptomology (Ross, 2000) in all social groups,


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including those with higher levels of economic capital. Similarly, aggregate neighborhood income predicts levels of diagnosis of schizophrenia and substance misuse (Goldsmith, Holzer, & Manderscheld, 1998). Some localities provide more “opportunity structures” than others as a result of the cultural and environmental possibilities for stress-free or healthgiving public behavior. For example, two neighborhoods may be grossly equivalent in terms of income, but one may have safer streets and more spacious green park areas for safe exercise than the other. Generally, more affluent neighborhoods provide more opportunity structures than poorer ones (Ellaway & Mcintyre,1998), emphasizing the fact that social position can be defined as either an individual or a neighborhood characteristic.

Race, Ethnicity, Gender, and Age In the British context, two groups of ex-colonized people (i.e., those with historical origins in Ireland or the West Indies) have higher rates of psychiatric diagnosis than other groups (Rogers & Pilgrim, 2005). The fact that the Irish are typically white suggests that ethnic minority status may be more important to consider than racial background. The epidemiological data on those from the Indian subcontinent is more ambiguous in that not all studies show higher rates of diagnoses. In the postcolonial context, a complicating factor is the type of migration involved, which could be either forced on or desired by the migrant. These different conditions could determine whether migration is experienced with hope or in a state of trauma and loss, thus influencing mental health status. Although much has been researched and written about gender and mental health, its relationship to detrimental outcomes remains unclear (Rogers & Pilgrim, 2005). Although more women than men are recorded as having mental health problems, this may be due to the fact that women present more often to primary care settings and because they live longer than men (and so have a higher prevalence of both dementia and depression in old age). In contrast, men are overrepresented in coercive mental health services (e.g., forensic services). Women are more likely to be diagnosed with panic disorder and depression than men, whereas men are more likely to be diagnosed with substance abuse and personality disorder (especially antisocial personality disorder). Thus, if diagnoses are examined, then any overall differences in the incidence of mental health problems between genders disappear. Across the life span, mental health problems are unevenly distributed. Young children and very elderly people are most at risk, creating a U-shaped distribution. This suggests that the notion of a middle-aged crisis is a myth. Indeed, some studies have suggested that people in their fifties and sixties enjoy the best mental health (Rogers & Pilgrim, 2003). Yet the investment in service resources tends to be concentrated in the working years age group (services for older people, children, and adolescents receive less investment in the United Kingdom). This financial pattern gives us a hint that mental health services may be more about social regulation for socioeconomic efficiency than an equitable response to need.

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SOCIAL FORCES AS DETERMINANTS OF JUDGMENTS ABOUT PSYCHOLOGICAL DIFFERENCE The foregoing section has explored what we know to date about the social causes of mental illness. It has emphasized predictable differences in society based on structural divisions of class, race, gender, and age, with the first of these having the greatest salience. However, we caution against naive realism. It would be possible to concede the causal role of social factors, but still operate within a naive realist view of the world. Put simply, we could think of social factors being part of a biopsychosocial mix of etiological factors to explain the existence of mental disorder but stop thinking socially from that point onward. We argue instead that although social factors are demonstrably causal of mental disorders, it is a value judgment as to why mental disorders are deemed to be problematic. These value judgments reflect inherently social processes. In other words, mental disorders are not self-evident, naturally occurring phenomena that are global and transhistorical. Instead, our position is that they reflect forms of deviance from or defiance of moral order and socioeconomic efficiency. Although no society has been indifferent to those who are distressed or act in an unintelligible way, how these differences have been valued has varied over time and place. For example, in antiquity, Socrates considered madness and sanity to have equal value. Psychological distress, as a social problem, has only emerged relatively recently in developed countries following the return of “shell-shocked” combatants returning from the World War I. Depression and anxiety states were framed as forms of disability, and government policies emerged to deal with problems that were stress-related (Stone, 1985). Prior to that in the 19th century, the sole medical discourse was about madness and the assumption that it was a genetically determined brain disease (even though records of asylum admissions would frequently refer to social or family triggers for lunacy). Similarly, drug abuse and recurring personality problems that became medicalized in the middle of the 20th century were previously framed as forms of fecklessness and immorality. If we examine the current mixture of psychosocial problems that are subsumed under the broad rubric of mental disorder, we find a typology consisting of: 1. Those who act in idiosyncratic unintelligible ways that arouse anxiety and perplexity in others; 2. Those who are miserable and know that they are miserable; 3. Those who in the past would have been seen as weak, antisocial, dysfunctional, and feckless (a range of views exist within this group about whether they have a psychological problem). The first cluster would receive diagnoses of schizophrenia or bipolar disorder. The second would be described as suffering from the common mental disorders of anxiety and depression. The third group would include those with diagnoses of substance misuse and personality disorders. Each group in its own way reflects a social frame for value judgments.


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In the case of the first group, a fundamental meta-rule of intelligibility in modern societies has been violated. This point was at the center of wellknown deviancy theories developed in the 1960s (e.g., Goffman, 1961). Adult citizens are expected to act in ways that others understand. If a person breaks a rule and then cannot or will not offer a persuasive account of that rule transgression, then the ascription of serious mental illness eventually occurs. Moreover, once a person is labeled in this way, most or all of his or her conduct thereafter is accounted for in the eyes of others by the presence of illness. This same argument applies to those in the third group. With regard to the second group, deviancy theorists would label this as a transgression of emotional rules, which can be ascribed to the self as well as by others. According to this view, we all learn from early childhood that there is a subjective state of “good enough” mental health (happiness, optimism, contentment, love of life, self-confidence, and confidence in others). We can contrast this against a wide range of feelings, some of which fail the positive test of psychological well-being. To use the phrase of Thoits (1986), we learn when we are breaking “feeling rules.” What has changed over the past century in Western societies is that the three groups, which represent different styles of rule infraction, have been associated with different levels of governmental interest. So-called mental health policy has been characterized by a twin track approach. On the one hand, there has been a tendency to construct a legal apparatus to ensure the proper (i.e., lawful) social control of those in group 1 and some of those in group 3. On the other hand, the government’s obligation to respond to selfdefined distress has been expressed through general health policy (delivered in primary health care settings).

MENTAL HEALTH AND CITIZENSHIP: THE CONTRADICTORY IMPERATIVES OF COERCION AND RECOVERY Although the social model of disability is applicable in the mental health field, a special dynamic of invalidation needs to be considered. • First, people express particular fears and prejudices, which can be either unique attributions about those with mental health problems or exaggerated forms of stigmatization that are present for all disabled groups. • Second, it is commonplace for governments in developed societies to install unique forms of legislation that define the conditions under which some people with a diagnosis of mental disorder are lawfully controlled. • Third, powers created by that unique legislation are usually delegated to health and social care professionals. Each of these issues will now be considered.

Concern, Prejudice, and Stigma in the Public Domain Those who are sane by common consent have traditionally been concerned with three interweaving political demands. The first demand is that

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those who arouse fear or perplexity in others should, in some way or another, be dealt with by agents of the government. In this sense, all psychiatric crises are social crises because they are triggered by a judgment in the public arena that something has to be done. The second demand is that those agents of the government should act fairly and reasonably, combining social control and a duty of care (i.e., legal paternalism or parens patrie). The third demand is that those who are truly sane should not be dealt with as if they are in the wrong category. For example, public concern about “wrongful detention” dominated the voting discourse at the turn of the 20th century around mental health legislation reform (Bean, 1980). The main public concern related to the unfair detention of the sane but not to the rights of the insane. By the mid-20th century, ethical concerns were being expressed about the use of the coercive detention and treatment of Soviet dissidents. Ironically, these claims were made by Western psychiatrists who were happy to detain their own “truly insane” patients at home (Bloch & Reddaway, 1978). Thus, the tendency to treat psychiatric patients as being undeserving of citizenship (until proven otherwise) has a long history and is reflected in the political economy of disability. Once a person has been deemed to have lost his or her reason, then citizenship can be removed legitimately until a case is made to reverse the decision. It was only later that century when the demand for duty of care (irrespective of the legitimacy of one’s detention) was also expressed by the public. Today, the general public tends to demand that mentally disordered people should, when necessary, be removed from society. At least in many Western countries, such as the United Kingdom, there is a general belief that removal should be achieved in a caring manner with restorative intent. Studies of decision making about mentally disordered conduct suggest that agents of the government (health and criminal justice personnel) do not roam society searching for patients to diagnose and treat. On the contrary, the decision making has usually already been made in the public domain. For example, police officers who remove patients from public spaces to a place of safety for psychiatric assessment typically do so at the request of the public. Similarly, families vary in their tolerance of psychological deviance before they call health professionals to validate the decisions that have already been made about the identified patient (Coulter, 1973). Prejudice and stigma about those who are acting unintelligibly is not new and can be traced back to antiquity (Rosen, 1968). To act in an unintelligible way is to break an implicit social contract in most complex societies. Rolerule compliance is expected, and a transgression of this meta-rule demands explanations or excuses from the rule breaker. If these are not forthcoming, then the deviant individual is deemed to automatically warrant social rejection. What has varied over time and place, though, are norms about the threshold and outcome of that social rejection. For example, some societies detain more patients than others. Some societies have treated those detainees well, whereas others have treated them brutally. The worst-case scenario was the systematic elimination of patients under the Nazi regime (Meyer, 1988). The powers of professionals to act within that range from benign paternalism to murder and persecution are ultimately derived from and legitimated by public norms and expectations.


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Politicians: Their Moral and Socioeconomic Priorities In light of the foregoing discussion of public prejudice and decision making, politicians are sensitive to public demands in liberal democracies. However, in societies where this type of responsiveness to public demand is not a main driver of political decision making (i.e., authoritarian regimes of both left and right), psychological difference provokes the need to impose coercive control. In other words, the government apparatus has a vested interest in controlling psychological deviance for more than one reason. On the one hand, politicians reflect, shape and respond to a moral order. The role-rule failures committed by people with mental illness are likely to stimulate and legitimate a mandate for political repression to preserve the status quo. On the other hand, those who are unable or unwilling to follow rules and fulfill role expectations represent a potential burden to economic efficiency. Thus, both the moral and socioeconomic order are concerns for politicians. The response of politicians in liberal democracies is twin-track. The first track provides a legal framework to define when and if mentally disordered people should be coercively controlled. Confusingly and euphemistically, this is usually called “mental health legislation.” Indeed, the political discourse about mental health is mainly limited to discussions or analyses of legislative frameworks of this type. The other track relates to the equally confusing notion of “mental health services.” The latter is a relatively new term. Previously, these services were called psychiatric services (reflecting their medical dominance). Before that, there were not services at all but “mental hospitals” and, even earlier, “asylums.” Mental health services offer places of protected treatment and restoration (psychiatric therapy and rehabilitation). They are about doing good and ensuring access to help; services are not (knowingly or primarily) about social control on behalf of others. However, in what sense are these services about mental health? Instead, they are overwhelmingly about the containment and or treatment of mental illness. In what sense are they services? Only in the sense that they have more than one client. Thus, the notion of consumer or customer, which is applied more frequently now, is problematic. Although some services may serve the interest of some people who have accessed them on a genuinely voluntary basis, they also serve many third-party interests, such as relatives, strangers in the street and the court system. For many psychiatric patients, professional interventions are imposed rather than requested.

Therapeutic Social Control: Role Conflict and Strain in Mental Health Professionals The interaction of public and government interests in defining and responding to mental disorder leaves their servants (“mental health professionals” ’) in an ambiguous role. The ambiguity, involving a mixture of therapeutic intent and a paternalistic willingness to remove liberty and intervene without consent, has provoked much professional debate. At one extreme, the libertarian psychiatrists (such as Szasz) provide an early constructivist critique of mental illness, suggesting that mental illness is a myth because minds can

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only be sick in a metaphorical sense. Szasz also insisted that coercion should have no part in helping those with “problems of living.” When this happens in the modern therapeutic state, psychiatric staff act like witch finders, not healers. The professional orthodoxy within psychiatry has ignored these unpalatable accusations and favored the idea that mental disability is a primary and natural pathology (not a secondary and constructed product) and that it ipso facto requires paternalism. From this idea stems the doctor’s right to treat, which is privileged over the patient’s right to liberty. Indeed, during the 20th century, psychiatric leaders consistently lobbied to ensure their right to treat. A contradiction can be noted in the recent rhetorical shift toward a recovery model in psychiatric services and in the assumption that the disabling impact of stigma is purely a matter of public ignorance. Many psychiatrists and mental health professionals see themselves as part of the solution, not part of the problem. Patients are encouraged to seek help early (implying dire consequences further down the line if they “fail to engage with services”). They are encouraged to define recovery by compliance with treatment rather than by their access to everyday experiences of citizenship. There is an assumption that noncompliance with medication is an irrational act rather than one based on the patient’s knowledge and informed decision making. Thus, on the one hand, patients are encouraged to be collaborators in their treatment plans and informed consent is prioritized, but on the other hand, professionals reserve the right to treat on a compulsory basis and to ensure patient compliance. This paradox triggers dilemmas in the relationship between professionals and patients about balancing risk taking and risk minimization, with the continual threat of accusations from third parties that a patient poses a “risk to self or others,” something that the third parties believe should be prevented by mental health professionals. Health professionals are Janus-faced. Potentially, they could be advocates and collaborators, advancing the individual and collective rights of patients in localities to enjoy fuller citizenship. However, at the same time they are often restricted by their constructs of difference, which focus on reified diagnostic categories. They also, consciously or unconsciously, use conservative decision making. If they are charged with a duty of care, which is reinforced by the powers (and thus responsibilities) arising from mental health law, then they will not be blamed for coercively controlling the low-risk patient. However, they will be blamed if they take a risk that results in an incident of harm to self or others. This conservative decision making will work against the rights of patients to be free in favor of risk avoidance.

THE RELATIONSHIP BETWEEN PRIMARY AND SECONDARY DEVIANCE In the light of the discussion of social determinants of mental health problems and followed by a consideration of the social context of judgments about the value of psychological difference, a tension can be considered by those


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interested in applying disability theory to mental disorder. For example, it could appear that social determinists have it both ways. On the one hand, it can be reasonably argued from the evidence that social causes (e.g., the social origins of depression) are sound enough. Oppressive social forces and material deprivation make a significant contribution to the generation of human misery. On the other hand, those emphasizing destigmatization and social valorization would seek tolerance of misery and even its positive valuation. This contradiction revolves around values. Is misery simply an example of psychological difference that is unfairly stigmatized and socially excluded by those around the identified patient? Or is misery an indication of a failure of our common humanity? This tension is even more evident when we consider those who seem to break the social rule of intelligibility. Putting aside arguments about the validity of diagnoses, such as schizophrenia, when some people speak in ways others do not understand (i.e., thought disordered or delusional) or report sensory experiences not seen or heard by others (i.e., hallucinations), under which form of social arrangement might these forms of conduct be valued rather than devalued? In a Western context, where rationality governs daily activity in the home, street, and workplace and holds us all to account in our moment-to-moment activity, the meta-rule of immediate social intelligibility dominates. Those who are unable or unwilling to comply with this meta-rule are immediately vulnerable to social rejection. Counterexamples can certainly be found, but these are largely in preindustrial or traditional societies (e.g., the ability to have visions or hallucinate could have positive connotations about extraordinary spiritual powers and insights). The ancient philosophers were ambivalent about the value of madness. For Socrates positive aspects of mad rapture included prophesying (a “manic art”), mystical initiations and rituals, poetic inspiration, and the madness of lovers (Screech, 1985). At the same time, Rosen (1968) noted that in ancient Greece and Rome madness was associated stereotypically, as today, with aimless wandering and violence. Thus, we cannot simply argue that the current ubiquitous rejection of madness is a postindustrial phenomenon, but this ambiguity is a useful point of reflection about the immutable pathologization of severe mental disorder. Within the broad medical discourse of mental disorder, we can identify distinct groups using social criteria. In particular, a distinction is obvious between those who are fully aware of their rule infractions or their inability to fulfill role expectations (e.g., depressed or agoraphobic patients) and those who lack insight. The latter, which could be applied to acutely psychotic patients, has different implications to the former. Those without insight are better understood in terms of direct social distrust and rejection (i.e., they act in a way that others find, frightening, threatening, or offensive). By contrast, those who are frightened or sad may be inoffensive to others (i.e., they often elicit sympathy and compassion). They knowingly break feeling rules, and their distress is evident to themselves not just others (Thoits, 1986). Thus, the notion of mental distress does not do justice to the full panoply of mental disorder. It is a linguistic substitute or preferred euphemism for medical labeling, but it is just as limited in its capacity to comprehend

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the complexity of mental disorder. As we have shown, it is not always the patient’s distress that drives the social transaction, it is often the emotional reactions of others (i.e., pity, fear, disgust, and exasperation). This mixed emotional reaction explains why our commonsense reactions to psychological difference become enshrined in social policy as an admixture of paternalism, compassion and controlling rejection, with mental health services being given the responsibility of juggling all these impulses. The more a society is rule-bound, the more there will be coercive control of psychological difference. But no society (old or new, liberal or authoritarian) is completely indifferent to rule infractions and role failure. These violations tend to bring with them a set of moral and political prescriptions, even if they vary across time and space. Coercion is not unusual in mental health services, whereas it is very rarely applied to people with physical impairments. This coercive nature limits the capacity of services to respond to the demands of citizenship that are articulated by the disability movement. Whereas barriers to person-centeredness and citizenship operate in relation to all people with a disability, the disproportionate lawful use of coercion creates a qualitative shift in the field of mental health.

Similarities and Differences between Physical and Psychological Disability Given the arguments we have made in this chapter, we can ask whether disability theory (which has been derived strongly from the consideration of physical disability) can be applied to mental deviance. One challenge relates to whether all disabling processes apply equally to the range of conditions that fall within the ambit of health care organizations. Some constructivists limit their critique to mental illness. For example, an early, and for some notorious, example came from the dissident psychoanalyst Szasz and his declaration about the myth of mental illness (Szasz, 1961). What he proposed was to legitimate the idea that physical illness was not socially negotiated but ontologically stable across time and place. However, the neat boundary that Szasz (1961) aspired to retain between true and mythological pathology was not readily available. One response from political science to this disputed boundary was to frame all illness as deviance (Sedgwick, 1982). A different response was from biomedicine: namely, hoped-for reductionism, under which all mental illnesses were assumed to be brain diseases (Baker & Menken, 2001; Guze, 1989). The logical difficulty of isolating psychiatric labels for particular critical scrutiny is questioned by inflammatory conditions, such as rheumatoid arthritis, psoriasis, irritable bowel syndrome, and asthma. Similar to mental disorders, they appear to run in families. However, they do not follow precise genetic patterns. Also, like mental disorders, they have weak etiological specificity and poor treatment specificity. Analgesics, steroids, immunosuppressants, and even chemotherapies, developed for cancer, can be applied across a range of inflammatory conditions. The overlap of features between physical and mental disorders, which cannot be denied, coexists with a unified cultural discourse in both the public


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and professional arenas that there really is some sort of fundamental distinction between mental and physical deviance. When a diagnosis of a functional mental disorder (e.g., major mental illnesses or personality disorders) is made, it is determined completely on a patient’s words or actions. This situation can even hold true for the diagnosis of organic mental illnesses, such as dementia. In contrast, it is rare for physical disorders to be diagnosed on grounds of symptoms alone. Thus, although an overlap of epistemic features can be demonstrated between mental and physical illness, mental illness has become separate for most of us most of the time for a number of reasons. • We tend to think of physical injuries, diseases, and ailments happening to us, whereas we are mentally ill. Mental illness implicates the whole self, which, as a consequence, becomes discreditable (Fabrega & Manning, 1972). However, to temper this distinction, we can note that occasionally this negative socioethical attribution has also been a feature of physical conditions, such as sexually transmitted diseases, tuberculosis, and cancer. Many forms of physical illness have been associated with shame and moral failure. • The body is potentially explicable in physical terms, whereas human conduct can only be understood meaningfully via interpretive methods. Hermeneutics not biomedical science is implied (Ingleby, 1980). • Coercion is commonly applied to those deemed to be suffering from mental disorders, but is rare for those with physical diagnoses. Mentally ill patients are deemed to lack cognitive capacity about their actions far more often than physically ill patients. In the latter case, mental capacity loss is either very temporary (e.g., concussed patient or a hypoglycemic diabetic) or is the result of serious brain trauma. The bulk of physically ill people, even when terminally ill, are deemed to retain their cognitive capacity, whereas people with psychiatric illness are usually considered to have lost their reason. • At the turn of the 20th century, when institutional care was being eroded, a pecking order of citizenship could be seen in the disabled population. By the mid-20th century, the great bulk of physically disabled people were not in residential care, whereas those with mental health problems and learning disabilities were still overwhelmingly warehoused in institutions. Mental disability was therefore dealt with differently. This othering of people with mental disorders is also discernible generally in society. Stigma is attached to many forms of physical disability, but only epilepsy seems to evoke the same degree of fear, prejudice, and social rejections as mental disorder. These socioaffective responses are a ready platform to justify coercive containment and treatment. These similarities and differences suggest that on the one hand, hard-andfast distinctions between physical and psychological difference in society are difficult to construct. On the other hand, they are regularly distinguished, by both professionals and the public, particularly in societies that maintain and reproduce forms of fundamental Cartesian dualism. Probably the strongest distinction relates to the narrow preoccupation in the field of mental disorder with symptoms. Symptoms of mental illness tend to reflect incapacity in

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relation to role failure and rule infraction, whereas bodily signs of physical conditions are carried across all social settings. For example, untreated Type I diabetic patients, with their extinct pancreatic cells, will simply die wherever they are. By contrast, people who hallucinate might be discounted as schizophrenics or valued as mystics depending on their social context. Thus, the sick role exists to signal and excuse role failure for those with both physical or psychological problems. However, a psychiatric diagnosis signals a much wider inability to be trusted to follow the rules when operating within a social framework of rationality or moral order. It is only when that moral order values the nonrational that the patient is permitted a socially valued position. Interestingly, nonrational thinking and behavior has its place in artistic and spiritual arenas, so the less a society values these aspects, the more dismissive it will be of psychological deviance.

CONCLUSION This chapter examined mental disorder in the wider context of the relationship of disability to society to reorient analysis from a focus on the individual to the wider mechanisms and processes of social oppression, discrimination, and exclusion. We have adopted a form of weak rather than strong constructivism throughout, in line with a critical realist approach. The advantage of this approach is that allows us to accept evidence about the social determination of mental disorder, while giving due weight to the shifting and variegated value positions of communities of interest. Communities of interest include professionals, patients, and their significant others, all of whom are embedded within cultural norms about the tolerance or value applied to psychological difference in society. Those norms vary across time and space—a fact that tempers any naive realist approach to the topic, as is found in the universalism of psychiatric positivism or medical naturalism. To give an illustrative example of this distinction, schizophrenia is a dubious social construction, but some people do hear voices that their fellows do not hear. The critical question then relates to the social value that is ascribed to voice-hearing in particular times, places, or cultures. Similarly, fear and sadness are universal and transhistorical phenomena (found in all mammals, not just humans) but the meanings and social value placed on them vary across time and place. We also raised some questions in this chapter about the extent to which physical and mental health problems can be conceptually and socially conflated. Though socialized ourselves in Cartesian dualism, we tried to reflect on the dilemmas this creates for social science. At this stage of reflection we can identify similarities, ambiguities, and some persuasive distinctions. In other words, the two types of deviance have much in common, but there is a residual sense that mental disorder is different. This difference cannot be simply explained away by the conventions of lazy dualistic thought. Several grounds were offered to support this conclusion, but the strongest relates to the overreliance on public and professional labeling of what incipient patients say and do rather than on any demonstrable deviation from


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anatomical or physiological norms. This preoccupation with rule infraction (rather than the focus on impaired roles that is usually associated with physical disability) leads to a shift in focus in dealing with mental disorder. Thus, the socioaffective dimensions to mental disorder are important to understand. People with mental health problems are viewed as not complying with rules, in a variety of ways and to various degrees. In turn, this view produces a range of affective responses from nonpatients, including fear, loathing, perplexity, and exasperation. In turn, these strong emotional drivers create a social distance between the deviant and the nondeviant actors. In this field of othering we find the rationales or rationalizations for stigma, social exclusion, and therapeutic social control. In the case of mental disorder, this is disproportionately coercive and violates the norms of natural justice. With the exception of laws against terrorism, there are very few examples in liberal democracies where lawful detention without trial can be applied to the prospective rather than past conduct of adults. Mental health legislation is one of those examples.

REFERENCES Aneschensel, C. S., & Succoff, S. (1996). The neighbourhood context of mental health. Journal of Health and Social Behaviour, 37, 293–311. Baker, M., & Menken, M. (2001). Time to abandon mental illness. British Medical Journal, 322, 937. Bean, P. (1980). Compulsory admissions to mental hospitals. London: Wiley. Bloch, S., & Reddaway, P. (1978). Russia’s Political Hospitals. Futura Publications Ltd, London. Coulter, J. (1973). Approaches to . Insanity. New York: Wiley. Dooley, D., Prause, J., & Ham-Rowbottom, K. A. (2000). Underemployment and depression: Longitudinal relationships. Journal of Health and Social Behaviour, 41, 421–436. Fabrega, H., & Manning, P. K. (1972). Disease, illness and deviant careers. In R. A. Scott & J. D. Douglas (Eds.), Theoretical perspectives on deviance. New York: Basic Books. Faris, R. E., & Dunham, W. H. (1939). Mental disorders in urban areas: An ecological study of schizophrenia and other psychoses. Chicago: University of Chicago Press. Fryer, D. (1995). Labour market disadvantage, deprivation and mental health. Psychologist, 8(6), 265–272. Fryers, T., Melzer, D., & Jenkins, R. (2001). Mental health inequalities report 1: A systematic literature review. Cambridge: Cambridge University, Department of Public Health and Primary Care. Goffman, E. (1961). Asylums: Essays on the social situation of mental patients and other inmates. New York: Anchor Books. Goldsmith, H. F., Holzer, C. E., & Manderscheld, R.W. (1998). Neighbourhood characteristics and mental illness. Evaluation and Program Planning, 21, 211–225. Guze, S. (1989). Biological psychiatry: Is there any other kind? Psychological Medicine, 19, 315–323. Ingleby, D. (Ed). (1980). Critical psychiatry. Harmondsworth: Penguin. Kasl, S. V., Rodrigues, E. & Lasch, K. E. (1998). The impact of unemployment on health and well being. In B. P. Dohrenwend (Ed.), Adversity, stress and psychopathology. Oxford: Oxford University Press.

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Knapp, M. (2001). The costs of mental disorder. In G. Thornicroft & G. Szmuckler (Eds.), Textbook of community psychiatry. Oxford: Oxford University Press. Meyer, J.E. (1988). The fate of the mentally ill in Germany during the Third Reich. Psychological Medicine, 18: 575–81. Patel, V. (2001). Poverty, inequality and mental health in developing countries. In D. Leon & G. Walt (Eds.), Poverty, inequality and health. Oxford: Oxford University Press. Paykel, E. S., Abbott, R., Jenkins, R., Brugha, T. S., & Meltzer, H. (2000). Urbanrural mental health differences in Great Britain: Findings from the National Morbidity Survey. Psychological Medicine, 30(2), 269–280. Rosenberg, M., & Pearlin, L. (1978). Social class and self esteem among children and adults. American Journal of Sociology, 84(1), 53–77. Pilgrim, D., & Bentall, R. P. (1998). The medicalisation of misery: A critical realist analysis of the concept of depression. Journal of Mental Health, 8(3), 261–274. Pilgrim, D., Rogers, A., & Bentall, R. (In press). The centrality of personal relationships in the creation and amelioration of mental health problems: The current interdisciplinary case. Health. Read, J., Agar, K., Argyle, N., & Aderhold, V. (2003). Sexual and physical abuse during childhood and adulthood as predictors of hallucinations, delusions and thought disorder. Psychology and Psychotherapy: Research, Theory and Practice, 76, 11–22. Rogers, A., & Pilgrim, D. (2003). Mental health and inequality. London: Palgrave. Rogers, A., & Pilgrim, D. (2005). A sociology of mental health and illness (3rd ed.). Maidenhead: Open University Press. Rosen, G. (1968). Public Health and Mental Health: Converging Trends and Emerging Issues in Madness in Society: Chapters in the historical sociology of mental illness. London: Routledge & Kegan Paul. Ross, C. (2000). Neighbourhood disadvantage and adult depression. Journal of Health and Social Behaviour, 41, 177–187. Sampson, R. J. (1988). Local friendship ties and community attachment. American Sociological Review, 53, 766–779. Screech, M. A. (1985). Good madness in Christendom. In W. F. Bynum, R. Porter, & M. Shepherd (Eds.), The anatomy of madness: Essays in the history of psychiatry, vol. I. London: Tavistock. Sedgwick, P. (1982). Psychopolitics. London: Pluto Press. Stone, M. (1985). Shellshock and the psychologists. In W. F. Bynum, R. Porter, & M. Shepherd (Eds.), The anatomy of madness. London: Tavistock. Szasz, T. S. (1961). The use of naming and the origin of the myth of mental illness. American Psychologist, 16, 59–65. Thoits, P. (1986). Multiple identities: Examining gender and marital status differences in distress. American Sociological Review, 51, 259–272. Whitfield, C., Dube, S., Felitti, V., & Anda, R. (2005). Adverse childhood experiences and hallucinations. Child Abuse and Neglect, 29, 797–781.

CHAPTER 13

Parental Perspectives on Disability: The Story of Sam, Anna, and Marcus Heather Douglas and Sally Borbasi

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am and Anna named their last child Marcus. A few days after Anna and Marcus left the hospital and went home, Sam went back to work, and the older children returned to school. Anna noticed Marcus was fussy, was not easy to feed, or didn’t sleep well day or night. She became very tired but tried to keep the household running smoothly. She was very irritable, but hoped the situation would settle down soon. Marcus reacted badly to the first childhood inoculation and cried for three days. Anna phoned the immunization center for advice and was told to give him acetaminophen. One month later, Sam was asked to relocate and work in a different city for a few months. Anna felt she could not cope alone and opted for the whole family to move. After being in the new city for a few months, Anna became concerned. Marcus was making no attempt to roll or crawl. He was still a fussy feeder, did not seem to respond to speech, and reacted badly when placed on carpet or grass. He cried a lot, and quickly became over stimulated and agitated when in unfamiliar surroundings. It was not easy to go out with him in busy or noisy environments or if there was any delay involved. Shopping was difficult. Sam cared for the children on weekends while Anna did essential shopping or visited the hairdresser, but it was impossible for her to get to services, such as the dentist, unless they opened on weekends. Anna took Marcus to the local children’s service when the family returned to their home town. The service was busy; there was a long queue to see the nurse. Marcus became very agitated and screamed a great deal, so Anna wandered the building with him until it was her turn. The nurse weighed Marcus. He was very underweight. Anna wanted to ask about Marcus’ slow physical development but the nurse said the 10 minute appointment was finished.

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She suggested Anna come back again the next week to discuss how to introduce new foods. Anna asked if she could make an appointment, or phone instead, but was told the service operated only as a drop-in. The waiting with Marcus had been difficult and embarrassing. Anna did not return. Marcus was behind on all developmental milestones. At three years he had limited speech, was not toilet trained, and although walking, his gait was unsteady so he often fell and injured himself. He needed constant supervision. He did not play like other children, his attention span was short, and he was impulsive and fearless. He did unpredictable and bizarre things, such as climbing furniture and jumping, hitting other children, lunging onto a busy road, or trying to get out of a vehicle traveling at full speed. Anna was terrified she would lose Marcus in shopping centers and tied him to her so he could not escape. At home she always locked the doors and windows securely. Marcus did not sleep through the night. Anna got up to ensure his safety. To get as much sleep as possible, Anna went to bed as soon as the children did, but Sam usually stayed up late, so she and Sam were not together much. Sam complained about Anna’s sleeping habits and the lack of sex. He was concerned about the situation at home, and considered his primary responsibility was to provide for his family. To survive, the family needed his income. He could provide for his family by concentrating on his work. This was the most important thing he could do. He prioritized his work over family issues. Sam could do no more to help at home than he was already, but he could supply a secure future for them by building his career. He did not discuss this situation with Anna because there were no other options. Sam left Anna to care for the children. He did not get involved with Marcus. Sam saw Anna was very involved and knew she would tell him if there was something he needed to do. He concentrated on his job prospects. He wanted to succeed and make a career. He started to work long hours, usually coming home after the children were in bed. He was promoted, but the job had some tensions. He did not talk much to Anna as she always seemed tired. Anna continually felt irritable, stressed, and anxious. She often shouted at the children, but usually at home when no one was around. There seemed to be no relief from constantly attending to family problems. One of the children was hitting and biting other children at preschool. Although concerned, Anna did not know what to do. The oldest child often wet the bed at night and seemed very unhappy at school. Anna made an appointment with a social worker, was referred to a psychologist, and implemented rewards programs, but the bed wetting continued. In frustration, Sam threatened to beat the child if the bed wetting did not stop. Anna intervened. She stayed alert at all times to protect the children. It became her job to get up at night; after all, she wasn’t working. Anna would have liked to return to work, but could not find suitable care for Marcus. He was too demanding and was not offered a child care place. None of Anna’s friends agreed to care for him, and with no family living nearby, the only option was to become a full-time mother. It was easier to stay at home. Anna’s life contracted. Money was tight with only one income. Sam and Anna’s social life declined. There was never an escape. There was no money for a holiday. The family was fragile.

PARENTAL PERSPECTIVES ON DISABILITY

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Anna continued to seek support services. She took Marcus to a variety of health practitioners who examined him, took a history of his condition, and then referred her elsewhere. The appointments and tests were expensive, but she felt obliged to go to provide the best possible future for Marcus. One helping agency told Anna they must talk to Sam before they might offer a service. Sam attended the interview and indicated he was aware of the issues with Marcus’ behavior. The service asked Anna to implement a home program. This was more work. Anna asked if Marcus could attend the early intervention program at the agency instead, but was told he was too old. Nor did Marcus qualify for the special school. She looked for other services but found the criteria always excluded Marcus: he did not have the appropriate condition, his behavior was too difficult to fit in with other children, he was the wrong age or capability level, not at the appropriate intelligence level, the service did not cover the area where they lived, and so on. Anna really wanted services to help Marcus. She complained to regional directors of education, disability, and health services. She wrote to relevant ministers. She received polite letters outlining the present policies, but no offer of services. Anna was unsure what else she could do. She felt she should be able to cope—after all, she had been a competent professional woman before having the children. Anna observed that services were more attentive when Sam was present. They tended to talk to Sam, negotiate any change or commitment, and then discuss ongoing program implementation or future appointments with Anna. As a committed feminist and previously successful career professional, Anna found it rather strange that the mainly female staff in support agencies privileged Sam as the family decision maker while expecting Anna to deliver the traditional caring role. Sam did not notice this tendency, but did not dispute it when Anna mentioned it. Subsequently, he accompanied Anna if there a serious issue was to be discussed. Sam was puzzled about the issues at home. His relationship with Anna had been good before the children arrived, but now there seemed to be lots of tension. He was not really sure why Anna seemed so stressed. He tried to talk to her, but she seemed to avoid conversations about their relationship. He knew he could not fix the family problems himself, so instead he preferred to focus on aspects of his life where he could be useful. He did not search for help. The helping agencies did not contact him. Sam had other concerns. On top of the problems at home, he had missed out on work promotions. He wondered if his career had come to a halt. He looked for a second job. He seemed distracted. He did solitary things at home. Sam devoted himself to the garden. He took up fishing. He rejected Anna’s suggestion he might be depressed. He was emphatic he did not need assistance or medication. He had no need to discuss his private concerns in public domains, and would not have been comfortable probing personal parts of his life with strangers. His private life was not for public consumption. He might reveal his concerns to a trusted friend, in private, preferably during a quiet time alone while they were fishing. This person must be someone special. It must be a person Sam had confidence in. It would certainly be a man; Sam didn’t want to talk to a woman about his personal issues. It would be someone who would offer useful advice but not be judgmental or reveal his secrets. Otherwise there was

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no advantage in exposing himself. It might be an older relative or someone who had been in similar circumstances. Sam had no such friend or relative. He remained silent. For several years, Sam and Anna’s relationship was loving but brittle. Marcus did small tasks for this mother and helped his father with jobs. He played with his siblings. Sam took him fishing. Home and family was a safe haven for Marcus, but otherwise he seemed lonely, friendless, and isolated. Children were reluctant to play with him after school. He was never invited to birthday parties. Every Sunday night he cried at the thought of returning to school the next day. Sam was distressed. He contacted the school to discuss the issue, but was assured that everything was fine. When possible, Anna attended school functions to observe Marcus interacting with other children. He often reacted badly to teasing and seemed to be an easy target. The school refused to increase supervision and instead suggested Marcus would benefit from an anger management program. Anna searched for a more accommodating school where he would be free of bullying. The new school was much better for Marcus. Although he was still teased, the school responded to Anna’s request to manage the situation. Marcus could contact a staff member at any time to clarify issues or if he needed support. This made a lot of difference. Marcus still had no friends, but he no longer seemed unhappy at school. Anna got a part-time job. For the first time, the family was able to go out to dinner to celebrate a birthday. Sam bought a computer. The children were delighted they now could exchange computer games with school friends. To celebrate their wedding anniversary, Anna organized a weekend away with no children—their first in many years since the children were born. The older children could be left alone, but Marcus needed to be somewhere safe. This was difficult: no family lived nearby and Marcus had no close friends. The family took a beach holiday instead. Sam and Anna’s relationship improved a little. They started a social life. Sometimes they went out in the evenings without Marcus. Finally, Sam was promoted. He felt more positive. Life seemed better. Anna started a fulltime job with increased responsibilities. She found it very rewarding and the increased family income was very welcome, but finding time for Marcus was difficult. She often had to negotiate time off work to take Marcus for assessments or attend the school to discuss behavioral issues. Marcus was in trouble—an official warning from the police. It might have been much worse if they had not been considerate of his disability. This was serious. Sam convened a family meeting and instructed Marcus to apologize to each family member. Marcus was crying. The family was distressed. Sam had tears in his eyes. The family had a big hug. The problem was never mentioned again. Later Sam explained male discipline to Anna: Boys understand pain. They can cope. Even if it is really painful at the time, boys prefer to get it over and done with than to have it dragging on. They prefer immediate action, even direct physical punishment. It might be painful, but there are no long term repercussions. Fathers understand because that’s what happened to them. They have done a lot of this stuff themselves. This is a father’s way of providing discipline. It might seem hard at the time, but it’s


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over and done with now. Boys prefer that to a long drawn-out punishment, or emotional blackmail.

To have more time for Marcus, Anna gave up her full-time job. Marcus bumped through the middle years of school. He was elected to school leadership roles. He delighted in the extra attention and status and seemed to perform well. By the mid-teen years he no longer seemed unhappy. He was attracted to girls. He joined a drama group and a dance group and took up singing and public speaking. He was an excellent entertainer. He expressed a desire to establish a theater career. Sam was concerned. He worried about how Marcus could earn an adequate living in the precarious cultural industry when he still had trouble negotiating routine daily activities. Being able to eat and pay the rent was extremely important. Marcus would have to find a suitable job that paid a decent income to support himself. He was cheery and kind, but not worldly. He was generous by nature and had no concept of the value of money. He had already been robbed. He was easily persuaded, and sometimes his judgment was poor. He was not wary of Internet scams and con artists. He had trouble making appropriate decisions. He had trouble identifying potentially dangerous situations. Although he now reliably attended to his personal hygiene, he often neglected to do routine tasks even if requested to do so. He still did not do ordinary social things, such as return phone calls or attend to his responsibilities at home. He did not attend to deadlines. He never thought to ask for assistance. His negotiations skills were minimal. He either had no friends or made friends with people who tended to lead him astray. Sam suggested Marcus would be better off in more regular employment rather than working in the theater. He suggested Marcus could look where work was more abundant. He suggested some possible jobs, but did not continue when Marcus clearly was not interested. Anna took over this role. She spent many hours discussing future options with Marcus. She made suggestions about courses he could do when school was finished, and what kinds of jobs they might lead to. She taught him how to read a map and find his way around new places. She coached his budgeting and banking habits. She encouraged him to learn to drive, took him shopping, and advised him on the relative value of different kinds of goods. She taught him to cook and do the laundry. He became proficient in most household tasks. He took responsibility for mowing the lawn and barbecue cooking. Marcus completed school and started applying for jobs. Sam coached him on how to approach potential employers and answer the kinds of interview questions they were likely to ask. A school friend persuaded Marcus into a sales job. After one week he was asked to leave. His fast food job lasted a little longer. Anna suggested this was not the best type of work for someone with his skills and abilities. Marcus did not get another job for several months. Although content living at home, he seemed unsure what he wanted to do with his life or what kind of work he could do successfully. To encourage him to become more alert to life dangers, Anna organized for Marcus to live with another family for a period. This was expensive for the family, but it might help Marcus learn how to make decisions. The host family was kind and

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considerate and provided minimal supervision. He had to look after himself and organize his travel. Anna organized two different ways for Marcus to reach the family at any time when he might be distressed. She drilled him in how and when to contact them if anything went wrong, and reminded him always to have his phone with him. Marcus went camping with a group. He lost his phone and half his gear. He traveled alone to sightsee in another city for a week. Potentially this was very hazardous. Sam and Anna worried a lot but resisted contacting Marcus. He returned apparently without catastrophe— at least he shared no problems with his parents. Maybe Marcus talked to his siblings? Sam and Anna respected his privacy and did not ask. Gradually Marcus’ siblings left home. He continued to live with his parents while completing postschool study. He grew a beard. Sometimes he went out at night and didn’t return. Sam offered advice on how to mix drinks at parties. He discussed dating and how to approach girls, talked about the need for safe sex. Anna showed him where to buy condoms. Sam discussed how to be a man and masculine social customs, such as how to greet older women and when to wear a suit and tie. He showed Marcus how to change a tap washer and how to maintain a car. Sam and Anna left for a week’s holiday. They returned to find Marcus had been very ill but had not gone to the doctor, contacted his siblings, or sought help from neighbors. He was ill for several months. Marcus organized more solitary trips. These seemed successful, or at least without serious mishaps. He organized a visit to another country alone. Sam and Anna prepared him for a month to ensure he understood potential dangers and coping strategies. Anna helped him pack, Sam gave him extra money. After a week, Marcus sent a text message he was in hospital, then another that he had lost his credit card. Sam wanted more details. Anna phoned Marcus to discuss strategies. Marcus did not make contact again for several weeks. Anna worried constantly about potential dangers and possible problems. It was a difficult balance to let Marcus take risks and learn to manage his life while trying to help him stay out of trouble. To become fully independent, Marcus must be respected as a competent person. Sam worried much less. It was normal for boys to take risks. He trusted Marcus. Eventually he would learn how to manage. Marcus would grow up and become a respectable citizen. He left Marcus to get on with his life. Sam was offered another new job. It required a move to another new town. What about Marcus? Sam worried about the future for his son. Was he ready to live away from home successfully? Did he still need supervision? The caring role had ceased for the other children, but they might have to care for Marcus forever. Would Marcus ever leave home? Unless he did, Sam and Anna would have to maintain a carer’s role and close contact with Marcus for the rest of their lives. Their role was not difficult, but there was no break, ever. They loved their son, but the constant vigilance was wearing. Sam and Anna wanted some time together with no children before they were too old to enjoy life.

THE IMPACT OF DISABILITY ON PARENTS This case of Anna, Sam, and Marcus shows how disability influences the daily life of all family members. Disability affects the health and well-being


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of both parents (Dyson, 1997; Heller, Hsieh, & Rowitz, 1997; Raina et al., 2005), but mothers and fathers are affected in different ways (Krauss, 1993). Particularly when children are young, families with a disabled child have a higher degree of stress than families without a disabled child (Hadadian, 1994), and this impacts not only the immediate family but grandparents and wider family structures (Findler & Taubman, 2003; Roach, Orsmond, & Barratt, 1999). Parental stress is critical to the future of the children and the family, so it is important to understand how and why parents respond differently. Most research focuses on mothers, so the impact of disability on mothers is much better recognized than the consequences for fathers (Hornby, 1995). Mothers may express more emotion than fathers, but both parents report a similar level of stress (Dyson, 1997; Pruchno & Patrick, 1999; Saloviita, Italinna, & Leinonen, 2003). Mothers may be more exposed than fathers to the strains of providing direct everyday child care and to the responsibilities of managing economic hardship in the family (Ross & VanWilligen, 1996). However, fathers experience different kinds of stress, often associated with attachment to their children, their children’s behavior and temperament, social acceptance of the child, and concerns about the future (Hadadian, 1994; Saloviita, Italinna, & Leinonen, 2003). Like mothers, fathers plan for the future of their children—they love their children as much as mothers, but they interact with them differently (Bruce, Schultz, & Smyrnios, 1996; Ricci & Hodapp, 2003; Russell & Russell, 1994). There are several reasons fathers and mothers respond differently when they have a child with a disability. Mothers and fathers bring equal but different contributions to the life of a child with a disability. They use different coping strategies and different social expectations are placed on them. Further, helping services treat them differently.

DIFFERENT COPING STRATEGIES Following the birth of a child, men find their fathering role rewarding but also challenging (St John, Cameron, & McVeigh, 2005). Fathers tend to gradually and steadily adjust to their changed situation, whereas mothers report patterns of continuous sorrow and periodic crises (Katz, 2002). Mothers usually are more involved in delivering daily care, whereas fathers tend to focus more on matters external to the family (Pelchat, Lefebvre, & Perreault, 2003). The extent of daily support is important for mothers, whereas fathers are more sensitive to the external environment (Krauss, 1993). Research has shown that mothers cope by adjusting to their circumstances and looking inward to their home—family becomes their entire life. In contrast, fathers tend not to separate from the world—instead, they focus on their external world (Pelchat et al., 2003). Research has also shown that fathers worry more than mothers about the long-term implications of their child’s disability. For instance, in a study exploring the transition of people with a disability from institutional care to community-based housing, Borbasi, Bottroff, Hunt, and Williams (2005) found fathers expressed equal concern for their child’s well-being as mothers.

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They reported a sense of “always being worried” about the child even though these children were well into adulthood. One father whose profoundly disabled adult daughter was recently placed into care expressed relief he no longer worried “what’s going to happen to her if we die.” Whereas mothers tended to focus on the emotional aspects of their child’s life trajectory (i.e., the need for comfort and dignity), fathers raised more practical concerns. Many fathers went to great lengths to modify their homes to enable their child to come home at weekends. One father described how he modified a $1,200 special boot for his son so that it no longer caused pressure sores. “One night at 10 o’clock I said ‘we’ll make something.’ We went to the shed got a bit of plywood and I shaped it to his lower foot and up his calf and his mother padded it” (Borbasi et al., 2005). When asked about the community house his daughter now lived in, another father stated he believed she was better off, but he had noticed several drawbacks in the house that included cupboards and mirrors that were too high, a risk for those that were bed-bound if there was a fire, and significantly inefficient use of electricity. He had a number of practical solutions but stated that no one was interested in his opinions or suggestions. “People like me [and my wife] with years and years of experience with a family member being disabled . . . nobody takes any notice of us. . . . We’re not listened to, nobody cares about us and what we think, what hardships we’ve gone through.” Several studies have identified differences in the impact of disability on fathers. A child’s disability had a significant effect on the fathers’ sense of competence and self-esteem, which then affected marital satisfaction (Katz, 2002). Fathers helped by playing with the child, providing discipline, and deciding on services (Simmerman, Blacher, & Baker, 2001). The fathers’ involvement with the child improved the mothers’ sense of well-being. Although fathers were equally committed as mothers to the welfare of their family, activities beyond their home, such as their work, were important to their personal well-being (Ellis et al., 2002). Success at work was important. Increasing external activities, such as employment, reduced the father’s stress, and a higher family income was related to higher marital satisfaction, but it tended to increase their isolation from spouses (Willoughby & Glidden, 1995). Hence, increasing working hours for fathers may reduce the intimacy between the parents and result in less marital satisfaction. Indeed, fathers who have a child with a disability are more inclined to leave the family than fathers without a child with a disability (Hornby, 1995). Marital breakdown creates a double disadvantage for families by reducing the physical, financial, and emotional support two people can provide. Both parents reported a need for support, but they sought support in different ways. Mothers are visible. They openly talk to others about their situation and use positive coping strategies more frequently than fathers (Laws, 1998; McLinden, 1990). Mothers seek interpersonal contact to reduce their isolation and access support from a variety of sources (Katz, 2002; Pelchat et al., 2003). Mothers are comfortable seeking support and assistance from family members, friends, and helping agencies. They ask for help, and doing so is not seen as a sign of incompetence or failure.


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Like mothers, fathers feel emotions about their child and their situation but display their emotions less often and less publicly (Lillie, 1993). Men value their relationships as much as women, but rely on a different communication style that does not always enable them to discuss their personal problems. For instance, fathers have been found to be less likely to request help, and thus less likely to find support for their needs (Pelchat et al., 2003). They are raised to be strong and conceal their emotions, which may account for fathers’ needs being overlooked by helping agencies. Sam preferred not to discuss his feelings. He preferred to use cognitive approaches to problem solving, mull over issues alone, and muddle through by himself, assuming he should be able to manage, and presuming he would manage if he could just find the right solution. Asking for help may have implied he was incompetent, that he could not cope. In general, fathers were less inclined to acknowledge difficulties publicly, even if they find the situation problematic (Rodrigue, Morgan, & Geffken, 1992). Instead, they concentrate on tasks and achieving outcomes (Laws, 1998; Skene, 1998). This approach may appear adaptive (i.e., attending to problems and seeking solutions), but there may be no solutions to the issues and concerns of having a child with a disability.

DIFFERENT SOCIAL EXPECTATIONS FOR MOTHERS AND FATHER Mothering is a social institution, and mothers are expected to become absorbed in their children. This societal role is nonnegotiable; it is not discretionary. Mothers are recognized as an essential part of a child’s life (Skene, 1998). The mothering role and the child’s future are intertwined, and if mothers fail to commit to their children, they will be socially ostracized. When a mother has a child with a disability, additional roles are added to the usual tasks of family care (Crowe, VanLeit, Berghmans, & Mann, 1997), and these additional demands have an impact. Often mothers are expected to contribute to the child’s therapy. They may have additional health tasks to attend to beyond the usual care children require. On the basis of the social requirements of motherhood, mothers must become absorbed in providing all the care their child with a disability requires. There is often little choice for mothers as the child must be cared for, and society expects this nurturing work to be provided by mothers. Society may offer sympathy and agencies may provide support, but mothers must adjust their lives and wholly commit to their children. Research has found that mothers are more prepared than fathers to strive to achieve high standards of care for their children with disabilities (Pelchat et al., 2003). Mothers are expected to assume control, take charge of the child’s situation, and assume responsibility (Crowe, VanLeit, & Berghmans, 2000). They get to know their child better than anyone else. They make decisions about the child and organize the family. A mother of a child with a disability learns to focus on their child, but inadvertently the mother’s role may not leave much role for fathers (Pelchat et al., 2003). Mothers are expected to

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take primary responsibility for the household and children, and fathers are often considered peripheral (Skene, 1998). Nevertheless, fathers are significant and play an important role in modern families (Laws, 1998). Fathers are as aware of problems and issues with their children and experience grief to the same extent as mothers, but they experience the family situation differently, which influences their actions (Pelchat, Lefebvre, & Levert, 2007). Indeed, a father’s role is often cast as being separate from his children (Lillie, 1993). Fathers as well as mothers require emotional and practical support to maintain the family, particularly when a child has a disability, but the circumstances and contributions of fathers is less recognized than for mothers (Lillie, 1993; Nicholson & Rempel, 2004). Although fathers may wish to be engaged in the daily care of their children, many traditions and customs constrain their opportunities to do so. Fathers are expected to maintain full-time jobs and have the main responsibility for providing financially for their family. Having a child with a disability affects the decisions both parents make about employment (Einam & Cuskelly, 2002). Indeed, mothers of children with disabilities often struggle to adjust to the change in their family role and also have to reassess their expectations of employment. In modern societies, mothers have an expectation of continuing paid employment (Lupton & Schmied, 2002). Paid employment offers considerable personal benefits to mothers, including opportunities for self-fulfillment and increased self-esteem. However, mothers of children with disabilities have been found to have much lower employment levels than mothers with dependent children who do not have disabilities (Shearn & Todd, 2000). Shearn and Todd (2000) found the ability to work was influenced by many factors, not the least of which is the societal demand to care for a child with needs. It was more difficult for these mothers to access suitable child care or to find work that fitted their family responsibilities. Mothers who worked full-time became stressed by the dual demands of work and home. They found employment difficult. Conversely, those who decided not to work had little relief from their care responsibilities, which increased their sense of isolation and feelings of low self-worth. Either way they felt they had failed as mothers (Shearn & Todd, 2000). Another study (Einam & Cuskelly, 2002) found that mothers tended to work fewer hours, but those who worked had better psychological health. Although some fathers reduce the time they are in paid employment to be able to contribute to caring responsibilities, most felt the need to work longer hours to provide a higher income for the family and enable the family to better meet its requirements created by the disability. Especially when children were young, fathers who increased their hours of work reported fewer needs for support than those who did not increase their work (Ellis et al., 2002). Fathers found personal satisfaction and fulfillment in their work environments, but their decision to work longer hours affected the emotional health of the family (Einam & Cuskelly, 2002). Both directly and indirectly, fathers make meaningful emotional contributions to the family (Skene, 1998). Children become stronger emotionally when fathers are involved in their direct care (McKeering & Pakenham, 2000). Mothers provided better emotional care for their children when fathers


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provided emotional support to mothers (Hadadian, 1994). In the current social structures, however, fathers are less involved in providing daily care for the family than mothers (Skene, 1998).

DIFFERENT RESPONSES OF HELPING AGENCIES The approach of helping agencies determines the different ways mothers and fathers respond to having a child with a disability. Services need to consider how they interact with and discuss disability-related issues with parents. In Sam and Anna’s case, the father was taken more seriously than the mother when he attended an agency interview. Mothers are present at these meetings more often than fathers, but anecdotal evidence seems to suggest that if fathers do attend, agency staff interpret the issue as being more significant. Couples always commence their disability journey as a result of contact with a health service of some kind. Health agencies provide the first diagnosis, either at birth in the hospital, or later through medical services. Health services tend to focus on fixing health problems, but often a disability does not manifest as a major health problem. Not all children with a disability are sick. For instance, if a child has autism or learning disabilities, they may not come to the attention of health professionals and will be unlikely to be prescribed medication or medical interventions. Disability is a lifestyle issue, not necessarily a health issue. In general, health services concentrate on providing diagnostic services based on scientific evidence. Health services excel in assessment and diagnosis. Health services offer solutions to illness, cures, and normative outcomes. However, there is no cure for disability, and there may be no conventionally normal lifestyle that results from intervention by a health service. Disability is not a disease, but a socially constructed circumstance. Over time, families engage with helping agencies beyond the health system. Helping agencies provide a wide variety of support services that vary depending on the particular disability and the family’s situation. However, there are patterns in the relationships formed between helping agencies and parents of children with disabilities that differ from those found in the health system. Anna discovered there was a tendency for busy helping professionals to interact with and focus on the mother when agencies relate to couples with a child with a disability. They give paperwork to the mother, not the father. They ask her to complete details of the child and the disability. They direct questions to the mother about the child’s history and the family’s current situation. Helping agencies acknowledge the family care work of mothers and assume that mothers will be responsible primarily for caring for the child. They expect mothers to become the expert caregiver, which puts the father at risk of being isolated from the family unit (Katz, 2002). This presumption is evident in all agencies, including medical specialists, screening services, support services, schools, and government agencies. Helping agencies acknowledge the father, but they tend to be mother-oriented (Skene, 1998). They expect to talk to the mother. Throughout the child’s

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life, agencies continue to contact mothers to discuss problems or issues concerning the child, presuming mothers will be the first point of contact for all issues. The father is contacted only if the mother is unavailable, or if there is a very serious problem where both parents need to be interviewed. Fathers observe and absorb this practice. They learn that the child with a disability is “mother territory.” Fathers, even those with a professional background and highly responsible positions, quickly understand that in the Western health care system agency contact is skewed toward mothers. To complicate this situation, most contact between helping agencies and the family takes place during business hours, when fathers are usually at work. A father may take time off work to attend the first few interviews about the child, but over time he prioritizes his work commitments to provide for the family’s material needs (Laws, 1998; Skene, 1998). Thus, even if they wish to be involved with their child’s treatment, fathers tend not to engage with helping agencies. After several years, fathers withdraw and leave the domain of helping agencies to mothers. Fathers concentrate on attending to other matters where their input is valued more highly, such as paid work. Confining service contact to office hours is therefore an exclusionary practice that limits the engagement fathers can have in their child’s life. Children with disabilities need both parents to be involved with their daily activities and their future. Although helping agencies may not intend to exclude fathers, the practical arrangements tend to prevent fathers from becoming involved in the systematic care of their child. Perhaps because fathers are less visible, few helping agencies adequately acknowledge them, but focus more on the needs of the mother and the child. Few agencies offer services or information to fathers or support them in their role (Hadadian, 1994). Agencies seldom contact fathers directly, and in return, fathers may be wary of health professionals or have difficulty relating to them (Pelchat et al., 2007). Fathers do not tend to ask for services, and in the absence of requests for assistance, services suppose that fathers not need help. For a father to remain actively involved in the daily life of his disabled child, helping agencies need to acknowledge the child has two parents and design their service arrangements accordingly (Lillie, 1993). Research has acknowledged that helping both parents will help the child in the long term (Einam & Cuskelly, 2002).

DIFFERENT BUT EQUAL CONTRIBUTIONS Fathers provide masculine role models for their children and expose their children to male interests and experiences. Fathers offer alternative views on the world around them and provide manly experiences for their children (Ross & VanWilligen, 1996). They have a traditional role of playing with their children and also of dispensing discipline. Fathers are concerned to maintain some semblance of normality within the family, and this includes expectations of acceptable behavior (Pelchat et al., 2007). Fathers have high expectations of their children, especially sons. Fathers dispense discipline differently from mothers (Burbach, Fox, & Nicholson, 2004). Fathers


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can distance themselves when hard decisions need to be made; they can be detached from their emotions. Fathers may appear to have more head and less heart, but this does not mean they are heartless. They care for their family as much as mothers, but they display their attachment and commitment in a different way. They are concerned about different things and do the same things differently. Their contribution is different but no less important (Laws, 1998; Skene, 1998). Fathers can take their child into masculine territory and demonstrate ways of behaving that are unfamiliar to mothers. Unless the child is given supportive space in which to try out new behaviors, their lives will be cramped. Yet offering a learning space involves great risks. Accidents may happen and the child may be harmed physically or emotionally. Mothers offer emotional and practical support to enable the child to grow into a mature adult. They want to maintain regular contact to know their child is safe. Fathers are more comfortable with risks. Fathers assess the risk of each situation with detachment, information, rationality, and logic.

A LIFELONG FAMILY COMMITMENT A child with a disability is not a short-term event but a lifelong commitment, often without a break. The family involvement may never stop. Even when the disabling condition might seem relatively minor, such as Marcus’ Asperger’s syndrome, there are observable long-term impacts for families. Portway (2006) found parents continued to express concern about the exclusion and discrimination their children experienced as young adults. Asperger’s syndrome remained an observable condition. As young adults, they still did not “quite fit in” with mainstream society and its expectations. Parents found there was no end to the need to watch over their offspring to ensure their well-being. They continued to provide for their child’s emotional needs, companionship, and needs for shelter, physical security, and money. Few services offered support for families once the children were adults. Parents struggled alone to provide the best they could for their children. A family may wear out before the child is able to live independently or support themselves, if indeed they are ever capable of doing so. Parents may need to place their child in a group home or some other type of community residence. Parents express regret they cannot care for their child at home themselves, but as parents age, the task of caring for their grown child becomes physically impossible. It is not certain if the need for constant vigilance affects fathers differently from mothers, but fathers certainly are affected very significantly by the need to be constantly alert and on guard to support and protect their children. In Borbasi et al.’s study (2005), fathers in particular spoke of the need for vigilance in making sure their disabled child was cared for adequately. One father said, “we have to come [to visit the institution] so often—so we can keep watch.” Later he said, “people say have a holiday, go away. . . . But, how can we?” Parents spoke of the need to advocate constantly on behalf of their child to receive services and then make sure

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the services that were provided were adequate—this they called “a continual pushing or fighting for things,” which was draining and affected their health and well-being. One father rationalized this by saying, “he’s our son and we are his only voice.” Having two parents in the struggle for recognition of a child’s needs, however, considerably eased the burden. One father summed up his thoughts on having a disabled child by saying, “you see this is a marathon we’re in, it’s not a sprint it’s a marathon.” Clearly the need for continual concern does not go away even when the child with a disability is grown. A range of social barriers and negative attitudes continue to exclude adults with disabilities from full participation in society. As a result, the parenting role has no end. The need for constant vigilance is exhausting. The consequences for families, however, of continuing to provide care for their adult children with disabilities, are not well researched.

CONCLUSION When a family has a child with a disability parents are plunged into an emotional maelstrom and often feel their dream of a “perfect child” has been shattered (Pelchat et al., 2007). Disability stays with a family for life: it is a lifelong commitment. It affects opportunities and plans for the future. Having a child with a disability is challenging. Life is complicated. Problems are compounded rather than being isolated to one child or confined to a single health incident. Disability is demanding. It affects family structures. It redefines every aspect of family life for both parents. In the context of disability the experiences of mothers are well recognized, but the perspectives of fathers are not well documented. The case of Sam and Anna, along with the research outlined here, indicates clearly that fathers are significant in all families; in particular, they play a very important role in families with a child with a disability. They provide income to support the family. They offer emotional support for mothers who provide most of the daily care for the child. Fathers provide male role models and experiences for their children. They dispense discipline differently from mothers, and have different expectations of their children (Laws, 1998; Skene, 1998). Fathers offer their children a masculine set of life experiences and understandings that are different from mothers (Laws, 1998). Fathers experience disability in their family differently from mothers. The stress on fathers extends beyond the home to other spheres of their lives. It affects how fathers feel about themselves and may subsequently flow on to effect their working life. Services need to support the whole family unit, siblings, grandparents, and especially fathers. They need to be proactive in contacting fathers. Disability is demanding on family time and emotional energy. It may destabilize or jeopardize the marital dynamic. All parents express a desire to be involved in the care of their child, yet this is not always easily accepted by helping agencies. It would be beneficial if the gate-keeping role of mothers and the excluding present structures of helping agencies could be reassessed to allow fathers to become more


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involved. Men, like women, need to be given the opportunity to raise concerns through relevant and accessible services. Services need to attend to all family members. Provision for the identification and ongoing support of all family members by staff would assist this process. It is more difficult for fathers than mothers to engage closely with their children, but their contribution to family life needs to be recognized and appreciated. Fathers, and families in general, need to be endorsed and celebrated as a vital part of the life of a child with a disability.

REFERENCES Borbasi, S., Bottroff, V., Hunt, I., & Williams, R. (2005). Developing a best practice quality of life service delivery model for people with disabilities requiring high levels of support. Final report of qualitative data. Adelaide: Flinders University Disability Research and Education Group. Bruce, E. J., Schultz, C. L., & Smyrnios, K. X. (1996). A longitudinal study of the grief of mothers and fathers of children with intellectual disability. British Journal of Medical Psychology, 69, 33–45. Burbach, A. D., Fox, R. A., & Nicholson, B. C. (2004). Challenging behaviors in young children: The father’s role. Journal of Genetic Psychology, 165(2), 169– 183. Crowe, T. K., VanLeit, B., & Berghmans, K. K. (2000). Mothers’ perceptions of child care assistance: The impact of a child’s disability. American Journal of Occupational Therapy, 54(1), 52–58. Crowe, T. K., VanLeit, B., Berghmans, K. K., & Mann, P. (1997). Role perceptions of mothers with young children: The impact of a child’s disability. American Journal of Occupational Therapy, 51(8), 651–661. Dyson, L. L. (1997). Fathers and mothers of school-age children with developmental disabilities: Parental stress, family functioning, and social support. American Journal on Mental Retardation, 102(3), 267–279. Einam, M., & Cuskelly, M. (2002). Paid employment of mothers and fathers of an adult child with multiple disabilities. Journal of Intellectual Disability Research, 46, 158–167. Ellis, J. T., Luiselli, J. K., Amirault, D., Byrne, S., O’Malley-Cannon, B., Taras, M., et al. (2002). Families of children with developmental disabilities: Assessment and comparison of self-reported needs in relation to situational variables. Journal of Developmental and Physical Disabilities, 14(2), 191–202. Findler, L., & Taubman, O. (2003). Social workers’ perceptions and practice regarding grandparents in families of children with a developmental disability. Families in Society—The Journal of Contemporary Human Services, 84(1), 86–94. Hadadian, A. (1994). Stress and social support in fathers and mothers of young children with and without disabilities. Early Education and Development, 5(3), 226–235. Heller, T., Hsieh, K., & Rowitz, L. (1997). Maternal and paternal caregiving of persons with mental retardation across the lifespan. Family Relations, 46(4), 407– 415. Hornby, G. (1995). Effects on fathers of children with Down syndrome. Journal of Child and Family Studies, 4(2), 239–255. Katz, S. (2002). Gender differences in adapting to a child’s chronic illness: A caUSl model. Journal of Pediatric Nursing, 17(4), 257–269.

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Krauss, M. W. (1993). Child-related and parenting stress—similarities and differences between mothers and fathers of children with disabilities. American Journal on Mental Retardation, 97(4), 393–404. Laws, T. (1998). Men’s contribution to health care within the family. In T. Laws (Ed.), Promoting men’s health—an essential book for nurses. Melbourne: Ausmed. Lillie, T. (1993). A harder thing than triumph—roles of fathers of children with disabilities. Mental Retardation, 31(6), 438–443. Lupton, D., & Schmied, V. (2002). “The right way of doing it all”: First-time Australian mothers’ decisions about paid employment. Women’s Studies International Forum, 25(1), 97–107. McKeering, H., & Pakenham, K. I. (2000). Gender and generativity issues in parenting: Do fathers benefit more than mothers from involvement in child care activities? Sex Roles, 43(7–8), 459–480. McLinden, S. E. (1990). Mothers’ and fathers’ reports of the effects of a young child with special needs on the family. Journal of Early Intervention, 14(3), 249–259. Nicholson, J. M., & Rempel, L. A. (2004). Australian and New Zealand birth cohort studies: Breadth, quality and contributions. Journal of Paediatrics and Child Health, 40(3), 87–95. Pelchat, D., Lefebvre, H., & Levert, M.-J. (2007). Gender differences and similarities in the experience of parenting a child with a health problem: Current state of knowledge. Journal of Child Health Care, 11(2), 112–131. Pelchat, D., Lefebvre, H., & Perreault, M. (2003). Differences and similarities between mothers’ and fathers’ experiences of parenting a child with a disability. Journal of Child Health Care, 7(4), 231–247. Portway, S. M. (2006). Living with Asperger’s syndrome—the phenomenon of “not quite fitting in.” PhD diss., City University, London. Pruchno, R., & Patrick, J. H. (1999). Mothers and fathers of adults with chronic disabilities—caregiving appraisals and well-being. Research on Aging, 21(5), 682–713. Raina, P., O’Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., Russell, D., et al. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115(6), E626–E636. Ricci, L. A., & Hodapp, R. M. (2003). Fathers of children with Down’s syndrome versus other types of intellectual disability: Perceptions, stress and involvement. Journal of Intellectual Disability Research, 47, 273–284. Roach, M. A., Orsmond, G. I., & Barratt, M. S. (1999). Mothers and fathers of children with Down syndrome: Parental stress and involvement in childcare. American Journal on Mental Retardation, 104(5), 422–436. Rodrigue, J. R., Morgan, S. B., & Geffken, G. R. (1992). Psychosocial adaptation of fathers of children with autism, Down syndrome, and normal development. Journal of Autism and Developmental Disorders, 22(2), 249–263. Ross, C. E., & VanWilligen, M. (1996). Gender, parenthood, and anger. Journal of Marriage and the Family, 58(3), 572–584. Russell, A., & Russell, G. (1994). Coparenting early school-age children—an examination of mother father interdependence within families. Developmental Psychology, 30(5), 757–770. Saloviita, T., Italinna, M., & Leinonen, E. (2003). Explaining the parental stress of fathers and mothers caring for a child with intellectual disability: A double ABCX model. Journal of Intellectual Disability Research, 47, 300–312. Shearn, J., & Todd, S. (2000). Maternal employment and family responsibilities: The perspectives of mothers of children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 13(3), 109–131.


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Simmerman, S., Blacher, J., & Baker, B. L. (2001). Fathers’ and mothers’ perceptions of father involvement in families with young children with a disability. Journal of Intellectual & Developmental Disability, 26(4), 325–338. Skene, C. (1998). Healthy fatherhood. In T. Laws (Ed.), Promoting men’s health—an essential book for nurses. Melbourne: Ausmed. St John, W., Cameron, C., & McVeigh, C. (2005). Meeting the challenge of new fatherhood during the early weeks. Journal of Obstetric Gynecologic and Neonatal Nursing, 34(2), 180–189. Willoughby, J. C., & Glidden, L. M. (1995). Fathers helping out—shared child-care and marital satisfaction of parents of children with disabilities. American Journal on Mental Retardation, 99(4), 399–406.


CHAPTER 14

Bullying of Children with Developmental Disabilites: An Ecolocial Approach to Program Development Rocky Liesman

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ullying has been linked to highly publicized school shootings; increased rates of depression, anxiety, and low self-esteem among victims and bullies (Hawker & Boulton, 2000; Heinrichs, 2003); and an increased chance of being involved in criminal behavior into adulthood for those who bully (Nansel, Overpeck, Pilla, Ruan, Simons-Morton, & Scheidt; Olweus, 1993). This combination of devastating consequences for bullies and their victims has contributed to the growing awareness of bullying among researchers and mainstream American culture over the past two decades. Researchers have also focused on groups of children who are particularly at risk for becoming the victims of bullying (Mishna, 2004). One of the more researched at-risk groups in the bullying literature has been students with developmental disabilities (Dawkins, 1996; Knox & Conti-Ramsden, 2003; Little, 2002; Martlew & Hodson, 1991; Norwich & Kelly, 2004; O’Moore & Hillery, 1989; Sabornie, 1994; Savage, 2005; Sweeting & West, 2001; Whitney, Smith, & Thompson, 1994). Despite the relatively large number of studies, there is still a dearth of methodologically sound research regarding the bullying of children with disabilities. This chapter examines the bullying literature for children with developmental disabilities and then presents some research that has highlighted the difficulties associated with developing programs for this population. Finally, I introduce the knowledge, immersion, natural observation, data collection, and development (KINDD) model, as a proposed approach to bullying research and program development among students with developmental disabilities.

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BULLYING OF CHILDREN WITH DEVELOPMENTAL DISABILITIES In the United States, developmental disability is defined by federal law (Public Law 98-527) as: severe, chronic disability of a person that (a) is attributable to a mental or physical impairment or a combination of mental and physical impairments, (b) is manifested before age 22, (c) is likely to continue indefinitely, and (d) results in substantial functional limitations in three or more of the following areas of major life activities: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency. (Petersilia, 2001, p. 2)

Individuals with mental retardation, autism, cerebral palsy, epilepsy, and severe learning disabilities are considered to have developmental disabilities. The United States remains years behind European researchers in the study of bullying in general, as their European counterparts have been studying bullying since the late 1970s (Smith & Brain, 2000). The bullying research conducted over the past two decades on children with developmental disorders has also primarily taken place in countries such as Ireland, England, and Scandinavia. Researchers in the United States initially focused their attention on the attitudes of teachers and students without disabilities toward students with disabilities in response to new mainstreaming policies (Kavale, 2002; Nougaret, Scruggs, & Mastropieri, 2005). These early studies did not focus on the incidence or effects of bullying for the victim and relatively ignored the occurrence and consequences of bullying of children with developmental disabilities. Only 10 studies (one conducted in the United States) have explored bullying of children with developmental disabilities. These studies have included a wide range of disability categories, multiple methods of assessment (peer, self-, and parent reports, teacher questionnaires, and researcher observations) and children from a variety of settings (i.e., special education schools, mainstream classrooms, language-based programs, and special education classes). Disability categories included in these studies were learning disabilities (Knox & Conti-Ramsden, 2004; Martlew & Hodson, 1991; Norwich & Kelly, 2004), Asperger’s syndrome (Little, 2002), physical disabilities (Dawkins 1996; Llewellyn, 1995), and other speech-related disabilities (Hugh-Jones & Smith, 1999; Savage, 2005). Despite these differences, all studies found that children with disabilities were two to three times more likely to be the victims of bullying than their nondisabled peers. Researchers also found that the bullying experienced by these children was more chronic in nature (O’Moore & Hillary, 1989; Sweeting & West, 2001) and was most often directly related to their disability (Norwich & Kelly, 2004; Sweeting & West, 2001; Whitney et al., 1994). Several studies found that children with developmental disabilities were more likely to be involved in bullying behavior as both victims and perpetrators than their peers without disabilities (Kaukiainen et al., 2002; Whitney et al., 1994). However, children with disabilities were more at risk of becoming

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provocative victims than are children without disabilities. “Provocative victim” is a term first introduced by Olweus (1978) to describe those children whose impulsive, emotionally reactive, and socially inappropriate behavior combined with uncontrolled aggressive behavior often provokes bullying behavior from others. Because many children with disabilities have a lack of social skills, information-processing deficits, impulsivity, and hyperactivity, the likelihood that they will become provocative victims is increased. This research has increased the awareness and understanding of involvement in bullying by children with developmental disabilities, both as victims and as perpetrators. However, several limitations are present in these studies that serve to prevent generalizability across studies. Limitations present in these studies included lack of a consistent, clear definition of bullying (Doren, Bullis, & Benz, 1996; Little, 2002; Martlew & Hodson, 1991; Norwich & Kelly, 2004; O’Moore & Hillary 1989; Sweeting & West, 2001), low numbers of children with developmental disabilities (Martlew & Hodson, 1991; Savage, 2005), absence of a control group (Dawkins, 1996; Little, 2002; Norwich & Kelly, 2004; Savage, 2005), and unclear distinctions between disability categories and amount of time spent in regular education classrooms (Dawkins, 1996; Doren et al., 1996; Knox & Conti-Ramsden, 2004; Martlew & Hodson, 1991; O’Moore & Hilary, 1989). The limitations in these studies not only restrict their generalizability but also contribute to the relative absence of bullying research and program development in this area during the early part of the 21st century. In one of the most significant and comprehensive studies on the bullying of children with disabilities, Whitney et al. (1994) improved on many of the bullying studies conducted with this population through inclusion of a control group, multiple sources of assessment, detailed definition of bullying, and a qualitative approach to understanding bullying in this population. They were also the first researchers to examine the effects of a bullying prevention program, developed for students without disabilities, on students with disabilities. They found that two-thirds of the 93 “special needs” children included in their study complained about being bullied. Most important, they found eight months after the implementation of a bullying prevention program developed for children without disabilities, the special needs children reported significantly fewer experiences with being bullied than their peers without disabilities and also an increase in their numbers of friends. Teachers included in that study were interviewed after the completion of the bullying prevention program and reported that the success of such a program would increase if it were adapted to the specific needs of students with disabilities. However, Whitney et al. (1994) did not provide suggestions regarding possible provisions to the prevention program, nor did they gain the students’, teachers’, or parents’ perspectives in terms of possible program elements specifically tailored to the needs of students with disabilities. Despite the demonstrated effectiveness of their bullying prevention program on students with developmental disabilities and the expressed belief that modifications to these programs would improve their effectiveness among children with disabilities, researchers have yet to develop a program that is tailored specifically to the prevention of bullying among children with developmental disabilities.

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PILOT STUDY This section examines the feasibility and effectiveness of using an ecological, qualitative design for the study of bullying among children with developmental disabilities. Quantitative data were collected from three groups of participants (parents, teachers, students) regarding the forms, location, and incidence of bullying committed against children with developmental disabilities. However, weaknesses inherent in the design (i.e., absence of a control group, difficulty comparing responses between groups due to the use of nonempirically supported surveys, convenience sampling, etc.) and implementation (i.e., low response rate, incomplete data, etc.) of this study made quantitative interpretations difficult and generalization of results impossible. This pilot study discussed in this chapter expanded on the method used in Whitney et al. (1994) by not only surveying teachers’ desire for a bullying prevention program developed specifically for children with developmental disabilities but also assessing the expressed needs of both the students with disabilities themselves and their parents. This study was the first to use a phenomenological, needs-based research approach for the study of bullying among this population. The phenomenological research design allowed me to gain a complete understanding of a phenomenon (i.e., bullying among children with disabilities) by studying a small group of participants who are deeply affected by the phenomenon (Creswell, 2003). Using a phenomenological approach, I was able identify school-specific resources and components that would be helpful in the development of a bullying prevention program specifically for children with developmental disabilities. The conclusions drawn in this chapter are based on data collected from teachers, parents, and students with disabilities from one middle school that had a large number of students with disabilities and a long history of mainstreaming students with developmental disabilities. Regular teachers, special education teachers, students with disabilities, and parents participated in the study. Ten teachers were nominated by the school to participate, but only seven responded, two of whom identified themselves as primarily special education teachers. The number of years each teacher reported working with children with special education ranged from 1 to 16 or more years. All seven of the teachers, two males and five females, were European American. Of 65 families identified by the school, five parents (three males and two females) participated in the study and agreed for their children to participate. Three of the five parents were unaware of their child’s specific diagnosis, but each was aware of the child’s need for special education. The remaining two parents stated their children had been diagnosed with a combination of attention deficit-hyperactivity disorder (ADHD) and a learning disability. The students were five male junior high students between the ages of 11 and 14 years (two were African American and three were European American). All five were eligible for special education services and, thus, had an individualized education plan (IEP) developed by school staff. Three of the students were considered to be high functioning, as evidenced by demonstrated level of expressive and comprehension abilities. The remaining two


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students appeared to have severe impairments and remained quiet throughout the entire data-collection process. Thus, the data in this chapter represent the views of the three vocal students.

Methods of Data Collection I used several measures to gather information from the participants. First, I developed a needs survey to identify both the necessity for and essential components of a bullying prevention program as expressed by the students, parents, and teachers. Questions were generated from themes identified in the literature and were then reviewed for relevance and readability by a prominent researcher in the field of bullying research among children with developmental disabilities (R. R. Heinrichs, personal communication, August 18, 2006). The student version of the survey focused mainly on their current knowledge of bullying, evaluation of past bullying prevention programs (if any), desire for such a program, possible interventions, and their belief in the possible effectiveness of such a program if implemented. The parent and teacher versions of the survey also contained questions about the individual and school resources needed to successfully implement such a program. In addition to the needs survey, I also used the Modified Inventory of Wrongful Activities (Heinrichs, 2003) and the Colorado School Climate Survey (Garrity, Jens, Porter, Sager, & Short-Camilli, 1994). The Modified Inventory of Wrongful Activities (Heinrichs, 2003) is a self-report questionnaire used to measure the incidence of multiple forms of bullying behavior (i.e., hitting, teasing, social exclusion, etc.). The inventory was modified from Brown’s (n.d.) Inventory of Wrongful Activities to specifically address the needs of children with Asperger’s syndrome by stating questions concisely and providing concrete examples to aid in understanding. The modified version contains 53 items, each of which contributes to 1 of 10 categories. It provided qualitative information regarding the forms of bullying experienced, typical location of bullying, the students’ responses to being bullied, as well as individuals from whom they are most likely to seek help. The Colorado School Climate Survey (Garrity et al., 1994) is a paperand-pencil self-report questionnaire developed to measure parents’ views of the safety of their child’s school environment as measured by ratings of the frequency of bullying, number of “safe” locations within the school, and the overall “climate” provided by their child’s school. The survey was used as a source of quantitative and qualitative information regarding the incidence of bullying as viewed by the parents of children with developmental disabilities and parents’ perception of the safety of the school environment.

Data Collection The data-collection process with the student group included the completion of surveys using a group format, in an attempt to decrease the stigma associated with bullying and to facilitate conversation among the participants.

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The questions were presented orally to allow students with severe reading or cognitive deficits to better comprehend the questions and also to provide an opportunity for clarification. Although the group format was valuable in allowing me to see the interactions and interpersonal dynamics of the group members, it became clear that this was not an effective or efficient means of collecting specific and meaningful data. More meaningful information might have been gathered through one-on-one interviewing, allowing for more individualized accommodations and ensuring that all voices were heard. Nevertheless, the main themes and observations that emerged from each group (students, parents, and teachers) are presented in the next sections.

STUDENTS’ DISCUSSIONS ABOUT BULLYING Provocative Behavior The three most active students displayed a range of behaviors that were often disruptive, aggressive, hyperactive, and inattentive during the datacollection phase. The oldest member of the group (eighth grade) demonstrated significant distractibility and hyperactivity throughout most of the focus group. He spent the majority of the group time exchanging insults (i.e., “You idiot.”) and, at times, threatening comments (i.e., “I could take you.”) with the seventh-grade group member. He appeared to have been the group member most deeply affected by bullying. He was observed during several points in the group to become quiet and visibly embarrassed when endorsing several of the bullying-related items. Just as the aggressive behavior of the three boys might have been labeled as provocative, the silence of two of the students could have contributed to their vulnerability to bullying. Specifically, their inability to communicate clearly and effectively would make the identification of bullying difficult and protections against bullying nonexistent. Thus, the nature of provocative behavior was unclear.

Definition of Bullying When asked to define bullying, each of the three boys identified behaviors such as punching, giving wedgies, pushing against lockers, and pinching as indicators of bullying behavior. One of the boys described bullying as a fight between two students, while another seemed to vaguely understand that bullying, unlike fighting, involves a power differential. Overall, the boys identified only physical forms of bullying and were relatively unaware of the multiple forms of bullying behavior.

Experiences of Bullying The three boys differed in terms of the location of bullying they had experienced. One boy indicated that bullying had occurred both between and during classes. The other two boys identified after school and lunch as times when they were vulnerable to negative comments and actions by others.


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All three of the boys endorsed having “mean things” done to them at least once each week. Responses then varied, with one boy stating that people were “mean” to him at school “more than once a day,” and another boy stating that he was bullied “several times a week.” The three boys all indicated that they had been victims of physical bullying. They reported having been hit, pinched, kicked, tripped, bitten, or spat on within the last school year. Two of the three boys also indicated that someone had stolen from them within the last school year, and one boy endorsed having had his clothes torn and things broken by another student. The three boys also reported having experienced relational or psychological bullying. Items endorsed by at least one of the three boys included having bad things said about a family member; being scared or threatened into doing things they would either get in trouble for doing or that they did not want to do; being left out of group activities; being afraid to talk in class or to make mistakes for fear of teasing; having difficulty learning in school because of feeling scared, angry, sad, or upset about the way they were treated by others; and having been laughed at by other students. All six items relating to teasing due to physical, racial, or educational differences were endorsed by at least one of the students. The three boys all indicated that classmates had insulted them over the last school year because they were in a different class or program. The African American student also endorsed being insulted because of his race. Four of the seven items representing experiences of sexual harassment or assault were endorsed by at least one of the three boys, and three of the seven items were endorsed by at least two of the three boys. All three of the boys endorsed having been grabbed, pinched, or kicked in a private body area. Two of the three boys admitted to having had sexual rumors spread about them and sexual insults written about them on walls, desks, or somewhere else.

Responses of Others to Bullying All three of the boys endorsed feeling that teachers did not like them as much as they liked other students. They also endorsed being hurt or angry (once a week or more) about a teacher’s actions or words. Two of the three boys also reported wishing their teachers would stop someone who was bullying them. The three boys reported that they did nothing if they witnessed bullying. Two of the three boys stated their typical response to being bullied was to act mean back, with one boy stating that he simply told bullies to stop. Despite their stated high rates of mistreatment by others, two of the three boys indicated they never told anyone about the incidents, and one boy indicated telling others only some of the time. Although they appeared unwilling to tell others about their experiences, all three reported that telling an adult at the school helped. Two of the three boys stated that telling a parent also helped, whereas one of the boys reported that it made things worse. All three of the boys reported that teachers did very little when they saw students bullying others.

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All three of the boys identified the school vice principal and parents as adults to whom they would go for help if someone was being mean to them. One of the boys said he would also go to the school psychologist for help. None of the boys endorsed the school counselor, teachers or resource teachers, the principal, or a police officer as individuals they would go to for help. When asked if they thought parents or teachers were aware of the problems they experienced with being teased, hit, or threatened, two of the boys stated their parents were aware, and one said he had never told his parents. All three of the boys stated that teachers were unaware of the problem; interestingly one boy even stated, “Sometimes teachers are the ones who bully.” The three boys stated that no one at school or home had provided them with information on bullying (i.e., what do when you experience bullying, how to prevent bullying, etc.). The boys also seemed confused about the presence of a bullying prevention program at their school. Two of the boys referred to “anger management classes,” which appeared to be a type of disciplinary system for dealing with aggressive children. The boys thought this program was helpful, despite the fact that none of the boys had ever been to the program nor could explain its purpose.

Future Bullying Resources In regard to the perceived usefulness of a bullying prevention program, two of the three boys stated that such a program would not be useful because “Some people don’t what to change, because they were raised around violence.” The other boy indicated that such a program would be helpful for him. When asked what they would include in a bullying prevention program, each of the boys agreed they would benefit from a designated individual to whom all students would report incidents of bullying, extra police officers, and additional security cameras.

PARENTS’ THOUGHTS ABOUT BULLYING Frequency of Physical and Relational Bullying All of the parents confirmed their child had experienced physical bullying of some form (i.e., hit, kicked, punched, etc.), but the frequency varied. One parent indicated that bullying only happened once to his or her child and another parent endorsed “five or more times per week.” Two of the parents endorsed that their child had also experienced several forms of relational and psychological bullying (i.e., name calling, being threatened, left out of activities, etc.). Again, frequency ranged from “one time per week” to “five or more times per week.” Overall, results suggested that the parents were aware of at least one incident of physical bullying experienced by the child. Parents, like the students, were more aware of physical bullying than the more subtle forms of bullying behavior (i.e., teasing, leaving out of games, name-calling, etc.). All of the parents indicated that a single individual committed the incident(s) against their child, and in all four cases the identified perpetrator was a boy. Parents identified a wide range of locations in which bullying occurred, but


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reported the classroom as the typical location of bullying behavior. Hallways and lunchroom, bathroom and locker room, and going to and from school were listed as additional locations of bullying. All of the parents stated that their child had informed them after the incident(s).

Safety of Child’s Environment Despite all of the parents indicating their child had experienced at least one incident of physical bullying at school, the parents rated the classroom, playground, hallways, and lunchroom as safe.

Possible Informants When asked whom their child could tell if they were being bullied, parents suggested that persons of power and authority need to be available (i.e., police, principal, teachers, and counselors). One parent responded that she could tell no one about her child’s experiences with bullying despite his being bullied more than once a week. Like the students, the parents seemed to believe that others, specifically authority figures, were “unaware” of their experiences with bullying, suggesting a lack of faith and trust.

Beliefs about Bullying Programs Like the students, parents were unaware of the existence of a schoolwide bullying prevention program and were unable to answer questions regarding its quality or how it could be improved. Three of the parents expressed their desire for a bullying prevention program developed specifically for children with disabilities, whereas the remaining two left this question blank. When asked what elements parents would include if they could create such a program, responses varied greatly in terms of depth and specificity. One parent identified the need for such a program to include parents through regular meetings with parents and calling parents when school personnel identified incidents of bullying. The remaining responses included vague suggestions aimed at both children and teachers (i.e., “Children need to get along with one another,” “Teachers need to be nicer to parents,” etc.). Parents were asked to identify the resources they and their child’s school would need to successfully implement such a program. Responses varied, with one parent indicating her desire for someone whose job was “guiding children with disabilities on a daily basis.” Similarly, another parent wanted “Someone for my child to talk to every time bullying occurs.” One parent simply listed “concern from the child’s school” as a necessary component of such a program. Another parent stated that “kids, teachers, staff, and parents would all need to work together.” In terms of who they would include in such a program, parents seemed to understand that the successful implementation of such a program would need to include a wide range of individuals, or as one parent expressed, “everybody.” This list included parents, teachers, principles, counselors, police

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offers, and psychologists, each of whom would be dedicated to the prevention of bullying. Parents saw their role in the prevention of bullying as being a model and a moral compass (i.e., “Inform my child about what is right and wrong,” “Informing my children to accept differences between children.”).

Limitations The most prominent limitation of the parent group was a low response rate. Only 15 of the 34 contacted parents were willing to both participate and have their children participate in the study. All 15 of the parents seemed open and willing to discuss their child’s experiences with bullying, as well as express their concerns regarding the safety of their child’s environment. Unfortunately, the expressed passion and willingness verbalized when contacting the parents via telephone did not generalize to the successful completion of a significant number of surveys. Specifically, only 5 out of the 15 participants returned the required information for themselves and for the child. Second, those surveys that were returned had additional problems, including unanswered questions and incomplete answers, and one parent did not complete an entire survey. Review of the open-ended questionnaires suggested some of the parents had limited reading and writing abilities, as several frequently misspelled words, had difficulty creating complete sentences, and on several occasions misunderstood the questions being asked. For example, one parent responded to the question, “Who do you feel you can tell if your child is being bullied?” with “They look sad, crying, and scared.” Retrospectively, based on the low response rate and suggested lower education level of many of the parents, more accurate and complete information could have been obtained by completing the surveys in person or via telephone. These methods may have controlled for possible difficulties in reading and writing, thus allowing parents to truly have their voices heard. Despite these limitations, useful information was provided by the parents, highlighting the need for schools to engage parents in future. Indeed, the lack of parental voice leads to an incomplete understanding of bullying and, worse yet, splinters any effective and systemwide approach to bullying.

TEACHERS Researcher Observations I made two separate trips to a special education classroom at the participating school to collect the completed consent forms and surveys. During both trips, I was allowed to sit in the classroom during a class period. These two trips resulted in a total of one hour of unexpected classroom observation. As a result, it became obvious that it was necessary to include natural observations in future studies of bullying. Specifically, natural observations can provide invaluable information regarding the workload of special education teachers, the behaviors of students with developmental disabilities, and


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the context within which both teachers and students with disabilities exist. Additionally, natural observations can better inform program development.

Teacher Views on Bullying Teachers were asked similar questions to those asked of the students and parents, including: 1. incidence, location, and type of bullying; 2. presence, effectiveness, and possible improvements of current bullyprevention program; 3. desire for a bully prevention program, necessary elements, desired resources; 4. teachers’ role in bully prevention; and 5. additional comments. The following sections outline their responses to these questions.

Incidence, Location, and Type of Bullying All seven of the participating teachers indicated that bullying was a problem for children with developmental disabilities at the middle school. Relational bullying (i.e., calling names, teasing, excluding from games, etc.) received the most endorsements—it was checked by six of the seven teachers. Teachers showed greater awareness of multiple forms of bullying behavior (i.e., physical, relational, psychological) than did participating parents and students. Five of the seven teachers also endorsed both physical (i.e., hitting, kicking, pushing, etc.) and psychological (i.e., threatening to hurt the child) bullying as forms of bullying experienced by children with developmental disabilities. The hallway was listed by five of the seven teachers as the location in which bullying behavior most frequently occurs. Classrooms, bus, and cafeteria were also listed as locations in which bullying behavior occurs. One teacher stated that children with disabilities experienced bullying in “all areas.” The classroom was listed by all three sets of informants (students, teachers, and parents) as a location in which bullying frequently occurred.

Bullying Prevention Program As was true of both parents and students, the participating teachers varied in their awareness of a schoolwide bullying prevention program. Four of the seven teachers were unsure whether their school had a bullying prevention program in place. The remaining three teachers described the positive behavior system (PBS) as the school’s current bullying prevention program. Of the three teachers listing PBS, however, only one stated that the program was helpful for children with developmental disabilities. The remaining teachers stated that whatever was currently in place was not working for these children. Reasons for the perceived ineffectiveness of the school’s current stance on bullying varied and included the cognitive deficits of children

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with disabilities, carelessness on the part of administration, inability of programs to address the environment in which the children live, and lack of information provided to both teachers and students. Participating teachers stated that the current programs could be improved by: 1. educating the students about their rights, appropriate responses, and correct steps to take when experiencing bullying; 2. teaching the children respect; and 3. decreasing stigma of snitching. To implement these improvements, teachers identified a need for the following resources: time, money, materials (i.e., workbooks and videos), workshops on bullying, district support, and motivation. One teacher expressed a need for “a nonbroken school system that is not focused solely on test scores.” This teacher’s response reflected a level of dissatisfaction and powerlessness expressed by several others regarding the school’s current policy (or lack thereof) and its exclusion of teachers in the decision-making process.

Future Bullying Prevention Programs Six of the seven teachers stated that a bullying prevention program developed specifically for children with developmental disabilities was necessary. One responded, “Yes, students (with disabilities) may not understand that what is happening to them is a form of bullying, that it shouldn’t be happening, and what they can do to stop it.” These six teachers also provided a detailed and varied list of elements they would include if they were to create such a program. Responses included making it a schoolwide program, inclusion of parents, addressing students’ rights and proper reactions, specific individual to whom students could report incidents of bullying, conflict management training, use of mediation, training, bullying resources, and surveys. One added that resources such as videos, role-plays, and puppet shows should be used to address the cognitive deficits present in many of these children. Last, teachers provided an extensive list of resources needed for the successful implementation of such a program. The most frequent responses included: 1. 2. 3. 4.

professional training (i.e., workshops), money, materials (i.e., lesson plans, books, videos, Web sites, etc.), and community/parent support.

Teachers’ Role in Bullying Prevention The most frequent response from teachers regarding their role in bullying prevention was to step in when they saw students being bullied by other students or “referee.” Additional roles included serving as a role model of appropriate behavior and serving as a resource for children who are being bullied in school. One teacher expressed her role as a resource for other teachers


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regarding what types of behaviors to look for and how to respond to incidents of bullying. Despite their depth of views about bullying, teachers varied widely in terms of their understanding of the dynamics involved in bullying behavior and in its prevention. The majority of responses came from two special education teachers who had received outside training in both recognizing and intervening with the various forms of bullying behavior. Thus, it would seem that education of teachers is a critical component in future programs.

LESSONS FOR DEVELOPING BULLYING PROGRAMS The results presented here only begin to scratch the surface of understanding the dynamics involved in the bullying of children with developmental disabilities. The process of completing this research provided me with a first-hand perspective on the lived experience of all involved in the creation and enabling of bullying. Consequently, it highlighted the complexity of the problem as well as the challenge presented to those involved in the development of an effective bullying prevention program for children with disabilities. Due to a relative absence of methodologically sound research on bullying behavior among children with disabilities, little is known about the lived experiences of all who are impacted by its presence. Through my use of a phenomenological approach, the ecological nature of bullying became clear and the need for a whole-school approach to bullying prevention was evident. Each group (students, parents, and teachers) of participants was aware of the severity and frequency of bullying among this population, and each expressed a sense of helplessness in addressing the problem alone. The students were burdened by behavioral and social deficits resulting from their disabilities, which served to increase their chances of victimization, decrease their believability as victims, increase their chances of becoming involved in bullying behavior, and decrease their trust in the school system and in their own sense of self-efficacy for preventing bullying in the future. Participating parents also expressed a sense of burden, as they felt excluded from their child’s education. However, their apparent lower level of education and decreased cognitive abilities, likely decreases their chances of expressing these needs to a large school system. Last, teachers expressed a sense of burden based on a perceived lack of support, follow through, and resources on the part of administration for appropriately dealing with bullying behavior among their students. Overall, these results are suggestive of a system that is burdened with limited resources and support, which ultimately increases the vulnerability of students with disabilities for future victimization. However, both parents and teachers expressed a strong desire to be involved in the prevention of bullying among this population and understand it will take a community effort.

THE KINDD MODEL KINDD stands for knowledge, immersion, natural observation, data collection, and development. I developed KINDD as a proposed method of

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developing a school-specific bullying prevention program. The KINDD model was designed for use by both researchers and clinicians (e.g., psychologists, counselors) working in or with local school districts. The model is based on the strengths and limitations of existing methods discovered through a pilot study as well as the identified gaps in bullying literature. The model provides both researchers and clinicians with a more reliable and ecologically valid method of data collection, program development, and program evaluation. Sobsey’s (1994) integrated ecological model of abuse serves as the foundation for each step of the KINDD model. It focuses on the role of context and environment in the abuse of individuals with disabilities. Sobsey’s (1994) model includes three major contexts: relationships, environments, and cultural. The relationship aspect of the model refers to the characteristics of both potential victims and offenders that make them more prone to receive or perpetrate abuse. The environment aspect highlights the role of different environments in facilitating or inhibiting the abuse of disabled individuals. Last, the cultural aspect stresses the importance of understanding the role of cultural beliefs and value systems in creating a climate that is conducive to the abuse of disabled individuals. The KINDD model emphasizes the importance of data collection at each point to ensure the ecological validity of a bullying prevention program.

Knowledge Developing a school-specific bullying prevention program must be based on detailed information about the community within which the school exists. As Pepler, Smith, and Rigby (2004) noted, “Efforts to extend an understanding of bullying and strategies to address bullying problems into the broader community may enhance the potential for change” (p. 312). Thus, the information gathered must include an understanding of all aspects of the community context for the school including its history, basic values, demographics, and socioeconomic status. Researchers and clinicians can gather this information by simply speaking to parents and teachers about the history of the school and its surrounding community. To gather this knowledge, it is essential to talk to teachers, parents, and interested community members who make up the school community.

Immersion Program developers must immerse themselves in the school environment, as suggested by Sobsey (1994). They should attempt to become a part of the environment that helped create and maintain bullying while simultaneously maintaining an objective and unbiased perspective. Teachers, parents, and students must be comfortable with the program developer’s presence and knowledgeable about her or his mission. This step should occur before any formal data collection begins. This step involves meeting with school personnel from all levels in the hierarchy and includes making oneself available to parents by having group meetings. More important, it is necessary to be present at educational planning meetings and parent–teacher conferences where


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interactions can be had with parents on an individual basis. This step is crucial for increasing the response rate, openness, and trust of parents, teachers, and students during the process of data collection. In addition, this step allows the researcher to truly hear, respect, and speak to the challenges that teachers, parents, and students face in addressing the problem of bullying. Last, the simple step of immersing oneself in the environment not only increases trust and legitimacy of the researcher but adds a richness to the data gathered that is missing when the researcher remains a distant, uninvolved observer to the process.

Natural Observation Program developers should spend the greatest amount of their time observing children as they interact naturally in the classroom, hallways, cafeteria, at recess, and so forth. Natural observation corresponds to the relationship component of Sobsey’s (1994) model, requiring program developers to become direct observers of the interplay of power and inequality in the bullying experiences of children with developmental disabilities. For natural observation to be successful, researchers must be clear about how to define bullying behavior and how the bullying of children with disabilities will look different from that experienced by children without disabilities. Particular attention must be paid to the provocative victim. The provocative victim is more likely to provoke their attacker through irritating, aggressive, and socially inappropriate behavior (Olweus, 1978; Schwartz, Proctor, & Chien, 2001). Intervention for such a child may need to be different from that used for the nonprovocative victim. During the natural observation phase, researchers are more concerned with the quantitative nature of bullying (i.e., number of incidences observed, types witnessed, teachers responses, etc.). Natural observation provides a more accurate view of those children who are at risk for victimization and are currently experiencing bullying. Further, natural observation provides a clearer view of the role teachers and parents play in creating an environment that either fosters or inhibits bullying behavior.

Data Collection The data-collection phase is concerned with qualitative data from the identified participants through individual interviews, focus groups, surveys, and questionnaires. This phase should be based on a phenomenological approach where the voices of students, parents, and teachers are used to develop an understanding of the phenomenon of bullying and how to prevent its occurrence. This includes perceptions about where victims feel the least safe, who should be included in such a program, and what resources would be needed to implement such a program. Focus groups and surveys with teachers and parents will help inform the necessary components of a bullying prevention program as well as resources needed to successfully implement such a program. Mishna (2004) noted the importance of parental and teacher involvement in bullying prevention

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because it is highly correlated with program success and successful implementation. The inclusion of multiple data points increases the credibility of qualitative research by providing a triangulated view and allowing program developers to compare and contrast multiple perspectives, leading to a more accurate view of bullying and its prevention (Llewellyn, 1995). These data also provide a strong baseline against which to assess program effectiveness.

Development The final phase of the KINDD model is the development stage. The program developer integrates all information gained about the community, from immersing him- or herself into the school environment, observing children and teachers in their natural environment, and gathering detailed information from several data points. By following the phases of the KINDD model, the program developers can create a comprehensive and ecologically valid bullying prevention program. Since the development of the Olweus Bully Prevention Program (Olweus, 1993), the first comprehensive whole-school intervention program to be implemented and evaluated, there has been a call for the further development of ecologically valid whole-school bullying prevention programs (Smith, Schneider, Smith, & Ananiadou, 2004). Programs such as the Peaceful Schools Project (Twemlow et al., 2001), Bully Busters (Newman, Horne, & Bartolomucci, 2000), and Bully Proofing Your School (Garrity et al., 1994) are just a few of the frequently cited programs (Orpinas & Horne, 2006). Smith et al. (2004) in their meta-analysis of effectiveness studies for wholeschool bullying prevention programs, found the majority of these studies were methodologically flawed (i.e., no control groups, limited adherence to protocol). As a result, the findings were too inconsistent to conclude that the approach is successful. Over a decade ago, Galloway (1994) wrote that a successful whole-school approach must 1. create a climate in which students view any form of bullying behavior as unacceptable and thus look to teachers for support when it occurs; 2. explore children’s views on bullying through both whole class discussion and individual or small group interviews; 3. understand and respond accordingly to the motivation, self-concept, and resulting self-esteem of both bullies and victims; 4. consider how current method of teaching and organizing (i.e., fullinclusion, part-time, etc.) students with special needs might contribute to their experiences with bullying; 5. include parents as potentially powerful sources of support both in detecting and in dealing with bullying; and 6. evaluate the effectiveness of the program. Many of these components are missing in several of the most frequently applied whole-school bullying prevention programs, which may account for their inconsistent effectiveness.


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Each school district provides its own unique set of strengths and weaknesses, and the effectiveness of whole-school bullying prevention programs will likely increase when such programs are developed with these strengths and weaknesses in mind. With the movement toward “off-the-shelf” programs, districts run the risk of ignoring the individual needs of each district. Despite the emergence of whole-school bullying prevention programs, none have gone the lengths suggested by the KINDD model in terms of program development. Further, none of these programs speak to the unique needs of children with developmental disabilities. The KINDD model is a method of program development that can be responsive to each individual school and its students with disabilities. The effective prevention of bullying of children with developmental disabilities is complicated by the physical, behavioral, social, and cognitive deficits present in many of these children, making interventions for this population difficult and labor-intensive. The KINDD model involves extensive use of valuable resources in the form of time, money, and administrative motivation. However, the complications in developing interventions for this population highlight the importance of a participatory and ethnographic approach to program development. The burdens of the KINDD model might outweigh its benefits in some contexts. Yet research and experience shows that current interventions are not addressing the complexity of bullying, particularly when students with developmental disabilities are involved. Therefore, despite the burdens associated with the KINDD model, it ensures the ecological validity of a program, and empowers a disempowered community by providing its members (i.e., parents, students, and teachers) with a voice in the creation of such program. So, in the words of neuropsychologist Dr. Jeffery Allen (personal communication, June 28, 2007), “Let the burden begin.”

REFERENCES Creswell, J. W. (2003). Research design. Thousand Oaks, CA: Sage. Dawkins, J. L. (1996). Bullying, physical disability and the pediatric patient. Developmental Medicine & Child Neurology, 38, 603–612. Doren, B., Bullis, M., & Benz, M. R. (1996). Predictors of victimization experiences of adolescents with disabilities in transition. Exceptional Children, 63, 7–18. Galloway, D. (1994, Spring). Bullying: The importance of a whole school approach. Paper presented at the launch of Durham London Educational Association. Garrity, C., Jens, K., Porter, W., Sager, N., & Short-Camilli, C. (1994). Bullyproofing your elementary school: Working with victims and bullies. Longmont, CO: Sopris West. Hawker, D. S. J., & Boulton, M. J. (2000). Twenty years’ research on peer victimization and psychosocial maladjustment: A meta-analytic review of cross-sectional studies. Journal of Child Psychology and Psychiatry, 41, 441–455. Heinrichs, R. R. (2003). Perfect targets: Asperger’s syndrome and bullying: Practical solutions for surviving the social world. Shawnee Mission, KS: Autism Asperger’s Publication. Hugh-Jones, S., & Smith, P. K. (1999). Self-reports of short- and long-term effects of bullying on children who stammer. British Journal of Educational Psychology, 69, 141–158.

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Kaukiainen, A., Salmivalli, C., Lagerspetz, K., Tamminen, M., Vauras, M., & Maki, H., (2002). Learning difficulties, social intelligence and self-concept: Connections to bully-victim problems. Scandinavian Journal of Psychology, 43, 269–278. Kavale, K. A. (2002). Mainstreaming to full inclusion: From orthogenesis to pathogenesis of an idea. International Journal of Disability, Development and Education, 49, 201–214. Knox, E., & Conti-Ramsden, G. (2003). Bullying risks of 11-year-old children with specific language impairment (SLI): Does school placement matter? International Journal of Language & Communication Disorders, 38, 1. Little, L. (2002). Middle-class mothers’ perceptions of peer and sibling victimization among children with Asperger’s syndrome and nonverbal learning disorders. Issues in Comprehensive Pediatric Nursing, 25, 43–57. Llewellyn, A. (1995). The abuse of children with physical disabilities in mainstream schooling. Developmental Medicine & Child Neurology, 37, 740–743. Martlew, M., & Hodson, J. (1991). Children with mild learning difficulties in an integrated and in a special school: Comparisons of behavior, teasing and teachers’ attitudes. British Journal of Educational Psychology, 61, 355–369. Mishna, F. (2004). A qualitative study of bullying from multiple perspectives. Children and Schools, 26(4), 234–247. Nansel, T. R., Overpeck, M., Pilla, R. S., Ruan, W. J., Simons-Morton, B., & Scheidt, P. (2001). Bullying behaviors among US youth: Prevalence and associations with psychosocial adjustment. Journal of the American Medical Association, 285, 2094–2100. Newman, D. A., Horne, A. M., & Bartolomucci, C. L. (2000). Bully busters: A teacher’s manual for helping bullies, victims, and bystanders. Champaign, IL: Research Press. Norwich, B., & Kelly, N. (2004). Pupils’ views on inclusion: Moderate learning difficulties and bullying in mainstream and special schools. British Educational Research Journal, 30(1), 43–65. Nougaret, A. A., Scruggs, T. E., & Mastropieri, M. A. (2005) Does teacher education produce better special education teachers? Exceptional Children, 71, 217–229. Olweus, D. (1978). Aggression in the schools: Bullies and whipping boys. Oxford: Hemisphere. Olweus, D. (1993). Victimization by peers: Antecedents and long-term outcomes. Hillsdale, NJ: Erlbaum. O’Moore, A. M., & Hillary, B. (1989). Bullying in Dublin schools. Irish Journal of Psychology, 10, 426–441. Orpinas, P., & Horne, A. M. (2006). Theoretical perspectives on bullying and aggression. Washington, DC: American Psychological Association. Pepler, D., Smith, P. K., & Rigby, K. (2004). Looking back and looking forward: Implications for making interventions work effectively. In P. K. Smith, D. Pepler, & K. Rigby (Eds.), Bullying in schools: How successful can interventions be? (pp. 307–324). Cambridge: Cambridge University Press. Petersilia, J. R. (2001). Crime victims with developmental disabilities: A review essay. Criminal Justice and Behavior, 26, 655–694. Sabornie, E. J. (1994). Social-affective characteristics in early adolescents identified as learning disabled and nondisabled. Learning Disability Quarterly, 17, 268–279. Savage, R. (2005). Friendship and bullying patterns in children attending a language base in a mainstream school. Educational Psychology in Practice, 21, 23–36. Schwartz, D., Proctor, L. J., & Chien, D. H. (2001). The aggressive victim of bullying: Emotional and behavioral dysregulation as a pathway to victimization by peers. New York: Guilford.


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Smith, J. D., Schneider, B. H., Smith, P. K., & Ananiadou, K. (2004). The effectiveness of whole-school anti-bullying programs: A synthesis of evaluation research. School Psychology Review, 33, 547–560. Smith, P. K., & Brain, P. (2000). Bullying in schools: Lessons from two decades of research. Aggressive Behavior, 26, 1–9. Sobsey, R. (1994). Violence and abuse in the lives of people with disabilities: The end of silent acceptance? Baltimore, MD: Brookes. Sweeting, H., & West, P. (2001). Being different: Correlates of the experience of teasing and bullying at age 11. Research Papers in Education: Policy & Practice, 16, 225–246. Twemlow, S. W., Fonagy, P., Sacco, F. C., Gies, M. L., Evans, R., & Ewbank, R. (2001). Creating a peaceful school learning environment: A controlled study of an elementary school intervention to reduce violence. American Journal of Psychiatry, 158, 808–810. Whitney, I., Smith, P. K., & Thompson, D. (1994). Bullying and children with special educational needs. In P. K. Smith & S. Sharp (Eds.), School bullying: Insights and perspectives (pp. 213–240). London: Routledge.


CHAPTER 15

Mosaic Reflections of American Muslims on Disability: Challenges and Solutions Mobin Tawakkul, Isra Bhatty, and Mohammed Yousuf

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he* American Muslim community is ethnically diverse and consists of an estimated two to six million adherents. As in any other community, American Muslims must address the challenges of accommodating the needs of the disabled. This chapter features three experiential narratives that highlight the breadth of emotion and context of living with disability in the American Muslim community. The first narrative touches on Mr. Tawakkul’s challenges to participate in community-based activities as a person who is deaf. In the second narrative, Ms. Bhatty describes her childhood encounter with accessibility challenges at the mosque. The third narrative discusses Mr. Yousuf’s struggles to adapt as a new immigrant to community life with a physical disability. These unique reflections will underscore the community resources and perseverance shared by the authors in overcoming challenges. Finally, the chapter offers solutions for the American Muslim population when attempting to address disability issues. All resolutions are derived from personal successes by the authors, the Islamic code of ethics, and the experiences of other successful American communities. Like the greater American society, the Muslim community in the United States is ethnically diverse, with members ranging from Indigenous African American, European American, and Native American converts to immigrants from Africa, the Middle East, and Asia. Muslims are adherents of the religion of Islam, a word that means submission to the will of God. They are followers

* Disclamer: The opinions or views expressed in this narrative are those of the authors only and do not reflect the position or views of the organizations that they are part of.

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of the Abrahamaic tradition, which features the core values of compassion, tolerance, respect, equality, and love of one omnipresent and merciful God. Muslims have had an extensive but often overlooked history in the United States. Muslims from West Africa and Spain reached America long before Columbus (Quick, 1996). Moreover, there were an estimated 2.25 to 3 million African slaves on arrival in the Americas who were Muslims (Diou, 1998). The institutional and community life of Muslims in America, however, did not take shape until the 1960s and 1970s, after the birth of African American Muslim movements of the 1930s and the massive waves of immigration of Muslims from Africa, Asia, and the Middle East following the passage of the Immigration Act of 1965. The population of American Muslims today ranges from the 2007 Pew National Study figure of a conservative 2.35 million to a 2004 demographics study of around 6 million (Ba-Yunus & Kone, 2004; Pew Research Center, 2007). American Muslims have greatly assimilated into society, where the majority is middle-class (Pew Research Center, 2007). They participate and contribute to American public life in a wide variety of ways, as professional athletes, actors, rap artists, doctors, engineers, teachers, and public servants. Approximately 65 percent of American Muslims are foreign-born and 35 percent are native-born. African American Muslims constitute 20 percent of the American Muslim population (Pew Research Center, 2007).

CHALLENGES OF A DEAF PARTICIPANT AT AMERICAN MUSLIM COMMUNITY EVENTS From the perspective of a deaf Muslim, Mr. Tawakkul discusses various challenges for deaf people in Muslim communities and religious gatherings. He offers suggestions for easing the integration of deaf Muslims into the greater community, in the form of technical resources, supporting organizations, and research.

Struggles A couple of years ago, I attended a weekly congregational prayer on a serene, bright Friday afternoon at a local mosque. This mosque was comprised of a diverse set of American Muslims, both Indigenous and immigrants, coming from a wide range of backgrounds—from inhabitants of the shores of Atlantic and the Bay of Bengal to the urban metropolitan districts of the United States. Due to the hustle and bustle of noon rush-hour traffic, I arrived during the middle of this congregational prayer and sat at the back end of the mosque, on top of Persian carpets with intricately repeated geometric mosaics. In loud, audible monotones detected by my cochlear implant’s signals, the imam was speaking through the microphone while moving his face right and left to attract the audience’s attention on matters of importance related to life and spirituality. Unfortunately, due to the distance between my peripheral vision and the imam’s mouth as well as the bright lights emanating from the ceiling where a

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crystal chandelier was placed above the pulpit, it was an arduous task for me to read his lips. Further complicating my present situation was my desire to block out the occasional tinnitus (ringing or hissing in the ears; National Institute for Deafness and Other Communication Disorders, 2002) caused by several surgeries to both of my ears in my preteen years. These ear surgeries have resulted in profound sensorineural hearing loss, meaning the absence of function in inner ear parts, such as the cochlea (American Speech-LanguageHearing Association, 2008). Thus, the hearing aids that I had worn since the age of five were of no benefit to me. Through informed consent with my family, teachers, and the medical community, I underwent cochlear implant surgery at the age of 15. I still rely on lip reading and speech recognition of sounds into actual words via the cochlear implant. The implant’s success can vary on certain circumstances, such as the speaker’s accent, the speed at which he or she is speaking, and background noises. Thus, according to my understanding, the cochlear implant is not a cure for deafness but an avenue to afford the hearing impaired the ability to hear certain sounds via electrical impulses that stimulate the remaining auditory neurons in the inner ear. The degree of speech and recognition skills of the cochlear implant depends on several factors such as the user’s background, medical history, and degree of deafness. Research has shown that deaf children who get cochlear implants early in their life (as young as the age of two) tend to do better in terms of speech recognition and language skills (Kileny, Zwolan, & Ashbaugh, 2001). A thought was brought to my mind while trying to read the imam’s lips: to participate in the lecture, I needed a laptop or notepad on which a volunteer could type or write notes for me. In the oral deaf program, I had usually depended on such services in my mainstreamed classes. Because I felt left out of the lecture, I eventually turned my head down to daydream at the intricate Persian carpet’s mosaic tilings until I was patted on my shoulder by an African American deaf individual who asked via sign language if I used sign language. I gave a smile and shook this brother’s hand and said the Muslim greeting, “Salaam,” and responded, “Very few” in simple sign language. I am still learning American sign language (ASL) and converse mostly via the alphabet signs. We were both experiencing the same hardship because there was a lack of interpreting services available to deaf and the hard of hearing Muslims at this community gathering. Interpreting services (e.g., sign language, a notepad/laptop note taker, or a professional stenographer) are currently lacking in American Muslim community events. There have been numerous instances in which I would have loved to have participated in popular weekend events but could not do so fully due to the lack of such interpreting services. There were instances in which I was left out during cultural plays, nasheed (Islamic song) concerts, inspirational lectures (both live and Webcast), the hilarious dialogues of our comedians, or educational workshops for enrichment of life skills. For members of the deaf American Muslim community who are left out of these types of events, there can be a sense of isolation or, at worst, depression. The lack of accommodations to meet the needs of the deaf American Muslim community as well as the greater disabled Muslim community in their

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activities and events is analogous to a situation which arose at the time of Prophet Muhammad and is described in the first few verses of Surah (chapter) “Abasa” of the Qu’ran (Ali, 2001). A blind companion, Abdullah Ibn Umm Maktum, was thirsty for knowledge so he asked the Prophet a question related to Islamic law. The Prophet frowned and turned away from Maktum because his primary attention at that time was devoted toward trying to speak to the elite tribal leaders on matters pertaining to Islam. God reproached and later forgave the Prophet for not including everyone wishing to learn about matters of spiritual significance. The American Muslim community can learn from this lesson of inclusion and unity in diversity, two of Islam’s core ideals. It is important for us to make every effort to include the deaf and other members of our community with disabilities.

Solutions Fortunately, through the wide range of available services provided by the greater American society for the deaf and hard of hearing community, there are several solutions for the American Muslim community to use when accommodating deaf members of their congregations in community activities. 1. The American Muslim community should become educated on the Americans with Disabilities Act (ADA), which was passed in 1990. The ADA protects individuals with disabilities from discrimination in employment, public accommodations, transportation, and communication. While the law has increased awareness about access issues for the disabled, attitudes of acceptance and inclusiveness have not been universal. For this attitude change to be realized and for real change to occur, proactive efforts via education and empowerment must happen through motivated individuals and communities. 2. The American Muslim community should employ individuals who work with and assist the deaf and hard-of-hearing community. There should be more culturally competent interpreters who are proficient in sign language, individuals who can type efficient notes via laptop, or professional stenographers who use the mechanism referred to as Communication Access Realtime Translation (CART). With this device, spoken word is translated into English text using a stenograph machine and a laptop. According to the U.S. Department of Labor’s Bureau of Labor Statistics, the employment of interpreters and translators is projected to increase 24 percent over the 2006–2016 decade, much faster than the average for all occupations (U.S. Department of Labor, 2007). Pending legislation called the Training for Realtime Writers Act of 2007 from the U.S. Senate (S. 675) and House floor (H.R. 1687) proposes to authorize $100 million in grants over five years to recruit and train realtime writers and captionists (National Court Reporters Association, 2007). There are an estimated 28 million Americans who are deaf and hard of hearing who would benefit with such interpreting services ranging from sign language to CART options (National Institute for Deafness and Other Communication Disorders, 2007). While growing up in the United States as a deaf Muslim, I was supported by a wide support network of professionals who graciously worked with me


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and my parents through the strenuous process of overcoming obstacles and succeeding in society. I soon learned that there were myriad professionals who helped the deaf community: speech therapists, audiologists, devoted special education teachers, school administrators, otolaryngologists, personal assistants in college who were hired to take notes via laptop for me, as well as professional CART reporters. The Muslim community should encourage its youth to consider such professions for employment opportunities. In doing so, the entire community can become more educated and empowered on how to meet the needs of the deaf—both American Muslims and those in the greater society. 3. American Muslim institutions should invest in making accessible technology available for the public. These technological solutions range from providing accessible Web-based solutions that are captioned or providing captioning on large plasma displays during community-wide conventions, theatrical plays, and musical concerts. I once joined a convention where I was able to fully participate with the assistance of a CART reporter. I also participated in a live hip-hop concert showcasing captioning on the plasma flat-screen TV during the University of Michigan’s Martin Luther King Jr. festivities in 2008. Captioning would not only assist the deaf and hard-of-hearing community, it would also assist the audience who use English as a second language (ESL) as well as youth and the functionally illiterate who desire to improve their reading skills. In fact, the use of closed-captioned TV programs has been shown to improve ESL students’ English vocabulary and reading comprehension skills (Neuman & Koskinen, 1992). It is also well known that captioning results in better comprehension as visual stimuli for the deaf and hard of hearing (Lewis & Jackson, 2001). My parents, whose primary language is Urdu, always watch television with closed captioning. As a result, in their e-mails to me, I have noticed that their English proficiency skills have increased. Fortunately, there are several resources available on the Web that the community can utilize when looking for captioning on the web or live events, including but not limited to the following: • National Center for Accessible Media (NCAM): NCAM does research and development to make rich media content resources and technology accessible to individuals with disabilities. Instructions to add captions to Web-based videos or making Web sites more user friendly are available electronically (National Center for Accessible Media, 2007). • ProjectReadOn: ProjectReadOn allows deaf and hard-of-hearing Web visitors as well as potential institutions to install captions to their Web-based videos for free through providers of captioning content (ProjectReadOn, 2008). • Described and Captioned Media Program (DCMP): DCMP provides captioned resources to support and improve the academic achievement of students who are blind, visually impaired, deaf, hard of hearing, or deaf-blind (Described and Captioned Media Program, 2008). The American Muslim institutions who wish to have their videos and documentaries with captions to share their heritage with the greater public, especially the individuals with disabilities, can utilize DCMP’s services.

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• National Court Reporters Association (NCRA): NCRA is a U.S. professional organization that serves court reporters and captioning professionals. American Muslim organizations and communities looking for captioning services for their events or multimedia content can look for local captionists and CART reporters through NCRA’s directory of professional services locator (National Court Reporters Association, 2008). Future legislative mandates may be made to ensure Web and other telecommunications high-content media be accessible via captions for the deaf and hard-of-hearing community. For instance, recent draft legislation in the U.S. House of Representatives titled 21st Century Communications and Video Accessibility Act for People with Disabilities may require the telephone and video programming industries to consider the concerns expressed by the deaf as well as the greater disabled community so they can be allowed to fully participate in society (Markey, 2007). Such mandates, if fully reached, may require the American Muslim community as well as the greater society to adjust to these legislative realities to ensure that high-tech digital content is made accessible to individuals with disabilities. 4. Event planners should be more proactive in soliciting requests for any special accommodations via e-mail, Web site, and other widespread public relations announcements. Every American Muslim organization and community centers should have a contact person to coordinate special accommodations so that individuals with disabilities can wholly participate in their publicized events. Such a contact person should be well versed in searching for potential contacts and accessible solutions such as a sign language interpreter, a laptop note taker, or a CART reporter. This contact person can serve as a mediator between the deaf members of their community and the event speakers and planners on how to meet the needs of the individuals so that full participation of community activities can be achieved. I have experienced several frustrating incidents where I have tried to reach the appropriate individual to meet my needs for a particular community event but did not know which individual(s) I should contact. There was one event in which the organizers of a community-wide event did not even answer my request to bring my laptop so that a volunteer could type notes for me. At that event, as a last resort, I asked a college friend of mine to graciously provide me with notes; he did so by scribbling as quickly as he could on a notepad. My friend admitted that his notes were not written to the best of his ability because the speakers were speaking too quickly. I also realized that the notes did not fully capture the content of the speech, which was to be expected because he was not experienced in this skill. 5. The American Muslim organizations and community members should practice outreach and collaboration with national, regional, and local organizations that work with the deaf and hard-of-hearing community. Such experiences would allow American Muslims to understand and become empowered on how to meet the needs of deaf Muslims. Organizations such as the National Association for the Deaf (NAD) or the local independent centers for individuals with disabilities can assist American Muslim community centers and organizations with a consortium of great resources and


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services pertaining to assisting the deaf and hard-of-hearing members of their community.

FROM STIGMA AND SEPARATION TO ACCESSIBILITY AND ACCOMMODATION: REFLECTIONS ON DISABILITY IN THE CHICAGOLAND MUSLIM COMMUNITY Here, Ms. Bhatty shares her experiences dealing with issues of accommodation and awareness in the American Muslim community. As a sibling of a child with disability, she relays an account of some of these challenges and offers lessons and advice for the community today.

Introduction Few Muslims are talking about disability in the United States. Thirteen years ago, there were certainly fewer. I can say as much with assurance, because 13 years ago, I—along with most of my immediate community—had no idea that the world of disability existed, or at the very least, paid little attention to it. The northern Chicagoland Muslim community as I was growing up in the 1990s was both bustling and diverse. It had no shortage of variety when it came to race, ethnicity, and social class, but was undeniably deficient when it came to knowledge or interest regarding disability. This stagnant social situation was shaken from its stupor when my younger brother entered the scene, illuminating the realities of Muslims with wheelchairs, mosques and community centers without ramps or elevators, and the gaping informational and support vacuum that surrounded affected families. I can attribute the ignorance and apathy of my community on the issue of disability to a number of factors: the general absence of individuals with disabilities in community settings, a pervasive stigma associated with certain social issues such as disability, and—as both a cause and effect of the first two factors—an overall lack of accommodation for individuals with disabilities. As my brother grew older, these problems came into increasingly clearer focus, as did their solutions.

Presence One of my most vivid memories of growing up in the northern suburbs of Chicago during the 1990s was selling chocolates to raise funds to build one of the largest mosques and community centers on the north side. The fundraising and organizing were successful, and the building we acquired became the first of its kind—not just a mosque but also a full-time school, Sunday school, and community center. I attended the Sunday school, and my parents were very closely involved with the school’s administration, serving as upper-level administrators and teachers. In my first five years of attending the school, I had never seen a single individual with a disability in the school, at congregational prayers, or at the community events. When my brother was born in 1995, he became the first obviously disabled child to frequent the school. And everyone took notice.

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There was no real name for the disability my brother had, which I think made it harder for people to understand his condition. The straightforward story was simply that he had limited motor and speech skills because of some complications at birth. In any case, the relevant fact to most of the public was that he used a wheelchair to move about, and such visible disability was enough to change the landscape of the school’s setting. In my remaining five years as a student at the Sunday school, plus my two years as a teacher, I witnessed the slow and steady emergence of other individuals with disabilities and their families. My brother remained the only child in a wheelchair, but there were other children who now added faces and personalities to the nebulous concept of disability—children with physical disabilities who used splints, walkers, and crutches, as well as others with mental and developmental disabilities. The seemingly sudden surge of individuals with disabilities made me think—what was the reason for their increase in presence? I doubted that all of a sudden the pool of individuals with disabilities had suddenly ballooned since 1995. The more likely story was either that families affected by disability were encouraged by the presence of other similarly situated families—like some sort of informal support group—or that individuals with disabilities had always been present in the community and I had simply not taken any notice. I cannot say with certainty which of these hypotheses is true, but the lesson for me has involved elements of both. I realized quickly from the demographic changes that disability was a reality of whatever community we lived in, no matter how intimate. To the extent that affected families felt somehow excluded from the community and wished not to attend the school or its events, such a feeling of exclusion needed to be rectified.

Knowledge I do not recall any sort of calculation or a deliberate decision-making process that took place when my family entered the school for the first time with my younger brother. Or the first time we brought him there in his new wheelchair. Yet as an awkward youth on the brink of her teenage years, I felt some sort of hesitance or, dare I say, embarrassment at the time. It seems, in hindsight, that my discomfort resulted in part from the fact that I did not really know how to greet the reality of disability. No one around me—neither my family nor my community—had any more knowledge or experience in the matter than I did, so there was a prevailing cloud of ignorance shrouding the issue and contributing to my discomfort. In a way, as a child, I did not know how to feel, or how I should feel, about having a sibling with a disability because I did not know how to feel about disability as a concept. Was it something natural—simply a normal fact of life? Did God create some people able-bodied and others disabled? I felt some determination within me to believe that was the case, but could not overcome the unease I felt when in the presence of others. Why was it the case that I could accept the normalcy of disability in my own home and when one-onone with my brother, but not when others were looking?


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The answer had something to do with general ignorance about disability, but also with the s-word: stigma. Stigma, I learned, combined ignorance with psychological discomfort. Stigma surrounded issues that people did not know much about but that disturbed them when they thought about them—issues like disability. Because of stigma, I, too, felt uneasy escorting my brother at school and at various community events. Somehow, his presence was penetrating a bubble of blissful ignorance, forcing people to think about subjects they would rather not face. Each time his wheelchair would enter the school building, the bubble would break, the stigma would unwillingly surface, and what was formerly taboo became at once a stark and present reality. All the latent questions people were previously thinking came into light: was disability “normal,” how did Islam treat disability, how should we treat someone with a disability? The surfacing of stigma created my discomfort. But the stigma about disability did not just exist because people were ignorant or disturbed by reality. There was a deeper story at play, which I noticed much later in retrospect. The fact that the issues that were commonly stigmatized in my childhood community were pervasive social problems—such as delinquency, substance abuse, mental illness, or environmental destruction— demonstrated an unwillingness to address these issues and a deemphasis on critical engagement with society. Disability, unfortunately, fell into the category of issues that were neglected, no matter their importance, because the community as a whole failed to emphasize or value them.

Accommodation Of course, both the problem of the absence of individuals with disabilities from the school scene as well as the problem of general ignorance and stigma surrounding disability, were exacerbated by, perpetuated by, and even themselves causal factors of the lack of accessibility, facilities, and accommodations. While the former two problems were more complex and difficult to discern, this latter problem was readily recognizable from day one. At the moment my family first brought my brother to Sunday school in his wheelchair, we were greeted by the gaping nonexistence of ramps and elevators. Sure, this deficiency was due to the fact that there were none in the original structure—before the Muslim community had purchased it—but it was also clear that adding such amenities was not at the top of the community’s priority list. Indeed, I had only noticed the deficit myself on the day I actually needed to make use of them. The lack of accommodation was not particular to the Sunday School my family frequented. Nearly every mosque or Muslim community center that I went to had accessibility problems, whether in the form of a lack of elevators, ramps, or lifts, or accommodation issues, such as classroom aides and technology for children with disabilities or teachers trained in special education. Despite my frustration with these realities, I could not fully blame the Muslim community, which had worked so hard to acquire buildings. Buildings that were affordable were often only small, two-story houses or older school buildings that only had stairs. Still, to the extent that accommodations were affordable but merely neglected, such as the frequently out of order elevator that never seemed to get fixed, the community was to blame.

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Perhaps inaccessibility was the reason I had never before seen individuals with disabilities in the school or mosque. Maybe these individuals and families had noticed the lack of accommodations, and so decided not to attend. Or maybe they took the lack of structural accommodation as symbolic of a more pervasive lack of acceptance of individuals with disabilities within the facility. Of course, such a lack of acceptance stemmed from the lack of knowledge about disability, which was certainly perpetuated by the absence of individuals with disabilities. There was a cycle of deficiency in presence, knowledge, and accommodation. I knew such a cycle would never end until someone was determined to break it.

Lessons Since the moment my brother introduced disability to my northern Chicagoland Muslim community, and the cycle of inadequacy was finally halted, there has been a distinct shift in the attitudes of the community, the demographics of the school, and the physical structure of the facility. These changes have largely been mirrored across the Muslim community of Chicago and throughout the nation. The presence of individuals with disabilities has increased, the knowledge and understanding of disability has been enhanced, and the level of accommodation and accessibility has risen. The Muslim community in northern Chicagoland has undertaken a number of mosque and school expansion projects, and, happily, the finished structures have been physically accessible. It is my hope that the breaking of the cycle of inadequacy brings about a new cycle of positive change—that the newly constructed accommodations encourage other individuals with disabilities to join community events and attend the school, and that this increasing presence enhances our awareness of disability and the needs of impacted families. In my years of experiencing the elimination of both physical barriers and barriers to acknowledging and understanding disability, I learned two major lessons. Hopefully, these lessons will foster the same positive changes experienced by the Muslim community in northern Chicagoland in other, similarly situated communities.

Lesson 1: Tackle the Ignorance Much of the problem that confronts activists working on disability rights issues is the sheer ignorance about disability that pervades communities. This issue must be addressed to pave the way for further change, whether in the form of increased accessibility or for raising awareness for its own sake. To raise awareness in communities, individuals with disabilities, their families, or others who have first or secondhand experience with disability must be present in the community. There is no better way to illuminate a highly taboo and underrecognized issue than to add faces, personalities, and life stories to the issue. The value of having knowledgeable individuals available to answer questions about disability that will undoubtedly arise or to merely show that disability is a normal fact of life cannot be underestimated. As demonstrated by my brother’s story, the presence of individuals with disabilities in the community can help break the incessant cycle of deficiency that surrounds issues of disability. I saw firsthand how a lack of accommodation and


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ignorance perpetuated a lack of presence among individuals with disabilities, which in turn contributed to a lack of awareness and, as a result, cemented the lack of accommodation. The cycle must break somehow, and having a critical mass of individuals with disabilities or others willing to speak out and make known the reality of disability can help break it. The onus of this lesson, therefore, falls squarely on individuals with disabilities, their families, and the people who know how to break the cycle and raise awareness. We have this responsibility and must act on it for the benefit of our communities.

Lesson 2: Build Support The second lesson I learned from my brother’s story is to build support in the community, which means both support in the form of structures (i.e., accommodation) and support in a moral and psychological sense that is geared toward affected individuals and families. The need and benefit of having structurally accessible facilities is obvious. To the extent that building wheelchair ramps, elevators, and lifts is financially feasible, every effort must be made to ensure their realization. For more financially restricted communities, such features should be emphasized and prioritized as a use of future funds. A less straightforward form of support that is no less necessary is moral and psychological support for individuals with disabilities and their families. It is extremely difficult, as I have experienced, for affected families to be engaged and to participate in their communities. In a way, such actions make these families feel vulnerable, so creating support groups for affected individuals and families would be very beneficial. These groups let their members know that they are not alone and that they have support, and inform them of the various sorts of help and options they have. For most Muslim communities, the creation of support groups is the next step toward true accessibility and accommodation. Such groups can begin small, in the form of mingling rooms at large-scale events such as the Islamic Society of North America Convention or even locally at various mosquecentered events. The critical task in creating these groups are to make sure that they are advertised well, especially in places that families with disabilities frequent, such as certain hospitals, therapy centers, and other support centers in the community. Of course, word of mouth is a powerful advertising tool in itself. In creating support groups, the community will not only offer muchneeded support to individuals with disabilities and their families within community settings, such as mosques or education centers, but will also increase awareness about disability in the community itself.

FROM AN IMMIGRANT’S PERSPECTIVE: INCLUSION OF INDIVIDUALS WITH DISABILITIES IN THE MUSLIM COMMUNITY In the final narrative in this chapter, Mr. Yousuf narrates his story of coming to the United States as a college student. He contrasts his American experience

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with his experience in India as a youth disabled by a childhood battle with polio, sharing his reflections on the numerous challenges he has faced.

A New Beginning August 26, 1990. It might not be a special day for most; however, it was a great day for me when the Air India flight landed at the Kennedy airport in New York. Unfazed at the challenges that remained ahead of me in adjusting to a new lifestyle without the support of my family and friends, I was willing to give it try and a chance, to make it worthwhile in pursuit of a new destination, a new dream, and a new lifestyle—to become successful in leading a meaningful, independent yet fulfilling life. Yes, I had left behind all the dear ones, but the barriers and the attitudes of people toward individuals with disabilities in India seemed more difficult to handle than the pain of living without the dear ones. I missed the connecting flight to Detroit that night and was allowed to stay in a hotel. Although I was lonely there, looking out of the window, I could see the bright, full moon shinning its glory and calm on a city bustling with activities. I felt different looking at the same moon that I used to see in India, where there were challenges . . . many challenges.

Life in India At the age of two and a half, I came down with a high fever, and over the course of few days, I became so weak that I was not able to walk. My worried parents took me to the doctor, who failed to recognize that I had polio. By the time I was diagnosed, the disease had done its damage, leaving me unable to walk. Polio made it impossible for me to walk without leg braces and crutches. For years my family coped with the indifferent attitude of family and friends and kept me at home, assuming that an education was not in the realms for me. At the age of 12, I started attending school at the encouragement of my grandmother, and I did well enough to skip fourth grade and advanced through the grade levels. When I graduated with a degree in electronics and communication engineering, I thought that my challenges would be over. Even though there were so-called provisions to hire individuals with disabilities in India, none of the corporations and the private companies came anywhere close to adhering to those guidelines. Much to my disappointment, an engineering degree did not result in a career in engineering nor in an independent life. I went from pillar to post asking for suitable employment. But it was not there. People felt that I would not be able to perform the duties of an engineer because I had a disability. The feeling among the employers then was that I should pursue menial skills, such as becoming a telephone operator or a clerk. The disappointment was actually a blessing in disguise since it forced me to explore opportunities outside of India. I came across a school catalog from the United States that talked about special handicap places for vehicle parking. That caught my attention and a little bit of research convinced me that it would be most meaningful to try and land in the United States to seek a


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career based on abilities. I fulfilled the requirements and applied to a couple of universities in the United States. I was issued a student visa and was allowed to study at a masters program in electrical/computer engineering. I was accepted by two universities, the University of Arkansas and Wayne State University in Detroit. I chose the latter. I waited anxiously to see what the future would hold for me.

Life in the United States When I reached Detroit, I could not find a place to live on campus. The only residence that was available was about couple of blocks away from the university. In that old red-brick, six-story building lived a couple of people from the same town that I had come from—Hyderabad. They were all very willing to help and made me feel welcomed and comfortable. To this day we are all good friends and have become a part of each other’s families. I lived with two other roommates who, to my surprise, were very caring and sensitive to my needs. I learned how to cook, and we all took turns cooking meals for each other. On my insistence, they would allow me to do some home chores where and when possible. It all seemed easy until the first big snow hit the ground. I remember one of my roommates jumping up in excitement, looking at the bright white landscape outside. While they were just excited to see the snow, inside I was afraid and frightened as I did not know how I would cope with the snow’s effect on my mobility. I knew walking with leg braces and crutches would not be fun or easy as mounds of snow accumulated. As the days went by, I learned how to walk in snow and on slippery surfaces. I knew walking out every day that it would only take a little accident for me to slip and fall down. I used to count my blessings every day and would go out on simple faith. I did fall a couple of times on campus, but thankfully I was not injured. A couple of weeks into my education, I was able to get an on-campus job. I made US$4.75 per hour working as a student assistant at a library. Twenty hours of work, two classes, the walk to the campus, and the chores at the apartment were enough to keep me busy. But I was happy that I was able to do things on my own. I could see that I was one step closer to getting my goal. I was soon able to obtain a manual wheelchair, but it was not much help as the apartment and building that I was staying in was not wheelchairaccessible. There was a set of stairs to get into the building, but the elevator that took me to the sixth floor was out of service most of the time. I used to walk up the six flights of stairs sometimes. Little did I know that even the Americans with Disabilities Act, which was passed in 1990, would not enforce compliance due to the old age of the building. The campus was about a 20-minute walk for me, and to make things worse, one of my classes was almost at the far end of the university campus, necessitating a 45-minute walk. I walked that distance every week during the fall semester, navigating a set of stairs that led to my classroom as the campus building lacked an elevator, and sometimes the slippery sidewalks that were not shoveled did not make it any easier. I still remember those cold wintery nights when the temperature and chill factor used to dip below zero; it was

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difficult to find many people even walking. I braved the weather; Almighty God gave me the spirit to get somewhere and kept me going. By the end of the first semester, things started to change for the better. I was able to get a housing unit on campus and was awarded a housing allowance by the engineering college. A Muslim community center was able to get me a scooter. I became a member of the President’s Committee on People with Disabilities at Wayne State University in 1991. Little did I know that this would become my passion—to work for the betterment of individuals with disabilities within and outside of the United States. I received my master’s degree in computer engineering in 1992. Soon after, I bought a used car and was able to obtain a driver’s license. I was ecstatic to be able to drive a vehicle fitted with hand controls for the first time. I felt great pleasure to be independent, to be able to go wherever and whenever I wanted. I joined Chrysler Corporation as a product engineer and got married to a caring and understanding woman from India, Humera. We now live in Michigan with our three lovely children. Throughout the years, I volunteered on several initiatives. I soon realized that although there were a number of nongovernmental organizations working on different relief and social development alternatives for India, Pakistan, Palestine, Somalia, and so on, no other group or organization in the United States was working to specifically address the needs of individuals with disabilities in India. So I founded the HelpHandicap Foundation in May 2001 with the help of few other friends. The HelpHandicap Foundation is a nonprofit organization that seeks to better the lives of individuals with disabilities in India (HelpHandicap Foundation, 2008). It has helped over a thousand people with various disabilities pursue education, receive equipment assistance, and start self-employment in different parts of India. I have also associated myself with a number of community-related projects for the betterment of individuals with disabilities in the American Muslim community and in mainstream America. However, it seems that not much has changed within the American Muslim community since 1990 when it comes to attitude, acceptance, and sensitivity toward individuals with various disabilities. Seeing some parents and individuals with disabilities struggle in our community reminds me of my childhood, when even a casual walk with braces and crutches across my neighborhood was an arduous task as it invariably invited curious onlookers and noisy name callers. I realized that the name calling had to do with how I looked and walked. I did not have an issue with that. However, I started to feel different emotionally since I was treated differently because of the way that I looked physically. As a result, I turned away from the world around me and mostly confined my life to myself. While polio is currently virtually nonexistent in the United States, other impairments like autism and mental impairments in particular are a cause of worry to thousands today. Our community seems to be particularly lacking due to a serious level of deficient awareness about available resources and how to cope and live with a disability. More and more, children with disabilities and their parents are living a life of despair and isolation. Parents may prefer to stay at home with their children


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with disabilities rather than participate in social events and gatherings. The burden is mostly shouldered by the mothers, while the fathers go out to earn a living and be at social events within the community without the child. Imagine the psychological impact on these parents. The trend is alarming and is causing huge psychological damage to the family, the individuals with disabilities, and the society at large. There is a certain degree of social stigma attached to a physical disability and that in turn adversely influences inclusion in the community, thus leaving individuals with disabilities feeling isolated and unwelcome. This might be the reason some families are reluctant to disclose that their child has a disability. This might be the reason they do not want to take the child to a social event because people offer an abundance of sympathy and bombard them with embarrassing personal questions in public. We do not seem to understand that it was not their choice to have a disability; if they had a choice, they would prefer a life without a disability. However, just because they have a disability does not mean that their disability should become the topic of the evening. This is a subtle and inadvertent form of maltreatment.

Reflections Parents need not feel insecure about having a child with a disability or be apprehensive about exposing her or him to the mainstream; the sooner they do so, the better it will be for them and the child. In society, some children often tease and mock a child with a disability in an unabashed manner. The impact of this teasing can be minimized if the children become educated and empowered about disability-related issues as they become older, so that these children may eventually come around and learn to live and deal with children with disabilities in much the same way as the siblings, friends, and peers of children with disabilities. Although the ADA, disability advocacy groups, and independent living centers have helped increase awareness and community inclusion for individuals with disabilities in the United States, my American friends with disabilities point out that they had to deal with a lack of sensitivity and awareness in the past. The progress we now see today in the United States is the result of many years of concentrated effort from various individuals and groups. A similar effort needs to take place in the American Muslim community now. The change has to come from all sides—parents, individuals with disabilities, and the broader society as well.

GENERAL CONCLUSIONS The American Muslim community is at a unique stage in its development. Recognizing and utilizing its diversity, the community has begun thinking critically and seriously about issues of social justice. On the issue of disability, however, the community has a long way to go. Based on our experiences, we suggest that the American Muslim community incorporate the following four recommendations in their future institutional and social development plans.

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Increase Awareness about Disability The Muslim community as a whole should make an effort to increase awareness about disability on all levels, beginning with their leadership. Imams, educators, and religious leaders should use various forums, including Friday sermons and Sunday School classes, to discuss disability and the community’s responsibilities towards individuals with disabilities. Families and individuals with experience in disability issues should also take the initiative to educate their leaders and peers, pushing the latter to disseminate the information to others. Although leaders may be educated one on one, we can also set up general education classes. Such classes should make sure to extend their education services to children and youth.

Build Internal Support Systems Muslims with disabilities and their families suffer from public stigma and informal segregation. The community, with the help of affected families, should create support systems for Muslim individuals and family members. These support systems should serve as networks of individuals with shared experiences that can rely on each other for moral support, guidance and counsel, expertise, and resources. Such systems have been a cornerstone in various social service settings and are much needed in American Muslim circles to provide support for individuals with disabilities and their families.

Think about Accessibility as Minimum Requirements Just as various American disability provisions, including the ADA, use the concept of minimum requirements when making facilities accessible, the American Muslim community should develop its own minimum requirements for its various mosques, schools, and community centers. Architecturally and design-wise, these requirements may involve, at the very least, ramps and elevators. In terms of resources, mosques and learning centers should require that certain religious materials (e.g. the Qu’ran and major texts) be provided in alternative forms for the visually impaired. Similarly, Friday sermons and major lectures should be accompanied by interpreters or electronic caption services for the hearing impaired. The community, including individuals with disabilities, should decide collectively on what minimum requirements should be in place.

Move toward Thinking about Universal Design American Muslims should also move toward thinking about universal design in their facilities. Universal design minimizes the stigma associated with disability by using barrier-free technology and design. Some examples of universal design include wide hallways and doorways, ramps, and volume and speed controls on audio output devices. Moving toward this system of design would send a message of inclusion to all individuals with disabilities and their families. By following recommendations such as these, the American Muslim community can demonstrate in its dealings with and attitude toward individuals


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with disabilities the same broadmindedness and humanity that has historically characterized Islam’s view on disability.

REFERENCES Ali, A .Y. (2001). The meaning of the Holy Qur’an. Beltsville, MD: Amana. American Speech-Language-Hearing Association. (2008). Type, degree, and configuration of hearing loss. Retrieved May 31, 2008, from www.asha.org/public/hearing/ disorders/types.htm. Ba-Yunus, I., & Kone, K. (2004). The mosque and the American public square. In Z. H. Bukhari, S. Nyang, M. Ahmad, & J. L. Esposito (Eds.), Muslims’ place in the American public sphere: Hopes, fears, and aspirations. Walnut Creek, CA: Altamira. Described and Captioned Media Program. (2008). Described and Captioned Media Program home page. Retrieved February 13, 2008, from www.dcmp.org. Diou, S. A. (1998). Servants of Allah: African Muslims enslaved in the Americas. New York: New York University Press. HelpHandicap Foundation. (2008). HelpHandicap Foundation home page. Retrieved February 17, 2008, from www.helphandicap.org. Kileny, P. R., Zwolan, T. A., & Ashbaugh, C. (2001). The influence of age at implantation on performance with a cochlear implant in children. Otology and Neurotology, 22(1), 42–46. Lewis, M. J., & Jackson, D. W. (2001). Television literacy: Comprehension of program content using closed captions for the deaf. Journal of Deaf Studies and Deaf Education, 6(1), 43–53. Markey, E. (2007). 21st Century Communications and Video Accessibility Act for People with Disabilities draft bill. Retrieved February 13, 2008, from markey .house.gov/docs/telecomm/draft_of_telecom_legislation.pdf. National Center for Accessible Media. (2007). NCAM rich media accessibility. Retrieved February 13, 2008, from ncam.wgbh.org/richmedia. National Court Reporters Association. (2007). Federal initiatives: The Training for Realtime Writers Act will help meet the demand for closed captioning and provide new opportunities for court reporters. Retrieved February 12, 2008, from ncraonline.org/PubPolicyAdvoc/fed_init. National Court Reporters Association. (2008). National Court Reporters Association home page. Retrieved February 13, 2008, from www.ncraonline.org. National Institute for Deafness and Other Communication Disorders. (2002). The noise in your ears: Facts about tinnitus. Retrieved May 31, 2008, from www .nidcd.nih.gov/health/hearing/noiseinear.asp. National Institute for Deafness and Other Communication Disorders. (2007). Statistics about hearing disorders, ear infections, and deafness. Retrieved February 13, 2008, from www.nidcd.nih.gov/health/statistics/hearing.asp. Neuman, S. B., & Koskinen, P. (1992). Captioned television as comprehensible input: Effects of incidental word learning from context for language minority students. Reading Research Quarterly, 27(1), 95–106. Pew Research Center. (2007). Muslim Americans: Middle class and mostly mainstream. Washington, DC: Pew Research Center for the People and Press. ProjectReadOn. (2008). About ProjectReadOn. Retrieved February 13, 2008, from www.projectreadon.com/index.php?pg=about. Quick, A. H. (1996). Muslims in the Americas and the Caribbean from before Columbus. London: Ta-Ha. U.S. Department of Labor. (2007). Interpreters and translators. Retrieved February 13, 2008, from www.bls.gov/oco/ocos175.htm.


CHAPTER 16

Voices of People with Disabilities (PWD) in Vietnam David N. Morrissey

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hile serving in grassroots disability organizations and self-help clubs in Vietnam for three months in 2006 as part of my graduate fieldwork, I surveyed people with disabilities in that country. Working with a Vietnamese translator and community advisory committee, I designed a set of questions that encouraged people to provide genuine and personal narratives about their experiences. Personal narratives and storytelling provide access to the experiences of groups who lack or are denied power to make their voices heard (Booth, 1996). My questions contained categorical demographic questions, such as gender, age, and types of disabilities. I then asked five attitude or narrative-eliciting questions with open-field answer spaces. These questions pertained to misunderstandings among peers about disabilities, interactions with disability service organizations, unmet needs, memorable experiences as a person with disability in school, and hopes and dreams for people with disabilities in Vietnam. Sixty-two people were surveyed in Vietnamese, and their responses were translated into English. Those responses are presented in this chapter. I have supplemented the voices of people with disabilities with my own journal entries, recorded during this time on the ground in Vietnam. The narratives presented in the chapter give voice to Vietnamese people with disabilities and their communities, and reflect real situations for people with disabilities around the world, in both industrialized and developing nations, and convey universal hopes. People with disabilities in Vietnam today are expressing their truths to change policy and raise awareness of their potential to work, to study, and to succeed.

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DISPATCHES FROM VIETNAM Toward completion of the master’s of public service degree at the University of Arkansas, Clinton School of Public Service, I spent 11 weeks in Vietnam serving grassroots disability organizations and surveying people with disabilities to fulfill the international fieldwork requirement of the program. With a background in community-based disability and health-related organizations, I developed a project vision with Peacework Development Fund to go to Vietnam under their auspices. I was hosted locally by their partner organization, the Hop Tac Tre YMCA of Vietnam, and a project advisory committee. This advisory group was comprised of independent researchers and disability advocates with extensive working history in the promotion of social awareness of people with disabilities and whose members have been engaged in both social work practicum training programs at National Vietnam University of Social Sciences and Humanities, Ho Chi Minh City, and with nongovernmental organization (NGO) projects in Vietnam and abroad. The committee provided me with documents and networking linkages and facilitated logistical considerations for me and my assistant-translator. My emersion was defined by life in a guest house in a nontourist area of Ho Chi Minh City, formerly Saigon, and my time was spent in site visits to various service organizations and self-help clubs, teaching grant-writing workshops, assisting grassroots organizations in grant application development, assisting disability educators in curriculum development, consulting in a visioning meeting of university students with disabilities, and participating in various disability forums. In addition to these activities, I surveyed 62 Vietnamese people with disabilities and conducted approximately 20 interviews with Vietnamese and international NGO staff persons, disability activists and consultants, and one government official working in disability services coordination. I reviewed recent Vietnamese government and international reports. Finally, I engaged in extensive journaling during the three months in Vietnam. The injection of my own observations into this chapter is intended to provide local color and a first-person account of my observations of the lives of people with disabilities in Vietnam. My observations also convey my experiences as a person with a disability in Vietnam. From my journals, I selected excerpts to send by e-mail to friends and family; I also posted entries to an online blog, along with photographs and video clips. Loved ones back in the United States and in other countries were able to reply with encouragement and interest in the posted details of my work, creating a global community of instant communication not delayed by courier mail nor constrained by expensive telephone calls. Voice-over-Internet Protocol telephone and video conferencing software turned my laptop computer into an international communication station. I was fortunate that the guest house where I lived had high-speed Internet to make this technology feasible, though the service was sporadic. When on the road in Vietnam, Internet cafés were readily available for plugging in and dispatching news of my experience. Within my first 48 hours on the ground, I had posted the following notes online: I have arrived in Ho Chi Minh City and I am exhilarated, yet exhausted by a long journey through five airports and four long flights. The scene outside the

VOICES OF PEOPLE WITH DISABILITIES (PWD) IN VIETNAM

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Ho Chi Minh City airport was crowded and noisy, with hordes of people in the stifling heat and sun, women mostly, pushed up tight to the barriers, calling out, holding signs with names, reacting with wails when a long-gone relative emerges from the airport and is seen. The barricaded path through the middle of this mob leads to the taxi stand with drivers offering rides, where I identified my liaison by the sign she held with my name and I waved at her and she back. We got into a taxi and left the airport and into the famed streets of Saigon, teeming with motorbikes and bicycles mostly and only a few cars, the women frequently in mouth coverings like surgeons to keep out the dust and exhaust but sewn of flowery prints, along with wide-brimmed hats or traditional cone hats and no one wearing a helmet. Streets curve and circle and merge with streets and the uncontrolled traffic merges awkwardly, dangerously, accented by honking horns in all styles. To be suddenly in this traffic, weaving through Saigon with its mix of old and shiny new structures was thrilling.

Although my time in Vietnam would be temporary, my status as someone disabled by mobility impairment is not. My identity as an adult with spina bifida has provided me a guiding inspiration for my career work, but in my work abroad it provided recurring contextual awareness for me as a foreigner and traveler. Another excerpt from that first journal entry written on arrival illustrates this: In anticipation of the long journey, I had arranged for transport between gates at every airport. Each time, a sky cap was waiting on the gangway from the plane with a wheelchair. I am so glad I did arrange for that, as Dallas, Los Angeles, and Hong Kong all involved great distances between gates. It really would have been exhausting to walk those airports on foot with a carry-on pack on my back. At some point I realized, perhaps while being pushed in a wheelchair, that my journey to find the disabled of Vietnam is allowing me to experience disability myself in a new way.

BACKGROUND: THE BOY AND THE MOTORCYCLE The Socialist Republic of Vietnam is a communist state in Southeast Asia. The country’s geopolitical history since the mid-19th century has been defined by nearly a century of French colonial rule, an ensuing war for independence from 1945 to 1954, Japanese occupation during World War II, division into North and South by the Geneva Conventions, and war with the United States for reunification from 1954 to 1975. Today it is a country of approximately 84 million people with a poverty rate just under 20 percent and is categorized as a low-income nation by the World Bank. Although the tumult of the 20th century delayed development in infrastructure, health care, and education, the 1986 Doi Moi (Renovation) free-market reforms placed the country in a position of increasing economic growth. By 2006, it was regarded as one of the best-performing developing economies in the world (World Bank, 2007). Disability rates in Vietnam are only estimates due to a variety of challenges to surveying. The conditions that define disability in Vietnam is a challenging task, and thus accurate estimates of disability prevalence are elusive. Discrepancies stem from inconsistent definition of disabilities and imprecise

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groupings, inadequate staff training in collection procedures, and insufficient analysis. This inconsistency, openly acknowledged by both the Vietnamese government and international organizations, has led to a variety of estimates. Data discrepancies exist between various governmental ministries and NGOs’ surveys; geographic data-collection programs have also varied among provinces. The quality of reported data varies widely. However, it is believed that disability in its most inclusive definition is highly prevalent in Vietnam, that children comprise a high proportion of the disabled population, and that service deliverers do not have the capacity to fully address need. A 1999 meta-analysis of existing reports on disability in Vietnam acknowledged the reporting issues and determined that although the range of estimates for the overall prevalence of disabilities in Vietnam ranged from 2 to 10 percent, it was most likely 5 to 7 percent (Kane, 1999). This remained the case seven years later in a 2006 report on disability to the 11th Meeting of the National Assembly of the Socialist Republic of Vietnam. Here, the Social Affairs Committee also acknowledged the challenge of the lack of measurement standards, but concluded that approximately 6.34 percent of the population, or 5.3 million people, had a disability (National Assembly of the Socialist Republic of Vietnam, 2006). Prevalence estimates for each specific type of disability also vary widely from one source to another; national survey estimates and community-based rehabilitation data indicate that motor disabilities make up more than one third of disabilities. The 2006 parliamentary report provided a slightly smaller number of 29.4 percent mobility impaired, with the overall breakdown for types distributed as 29.4 percent mobility impairment, 13.8 percent vision impairment, 23 percent mental impairment, and 20 percent multiple impairments (National Assembly of the Socialist Republic of Vietnam, 2006). Despite the lack of a uniform framework for defining disability in Vietnam, it was my observation among Vietnamese professionals, as well among people with disabilities themselves, that the “four major impairments” framework remains dominant: mobility, hearing and speech, vision, and mental disabilities. I decided to employ the four major impairments framework in my surveys, with the addition of a fifth category (“other”), providing the opportunity for respondents to further explain their self-identified disability. One Vietnamese activist with disability told me that Vietnamese culture tends to define disability by observable impairment, resulting in misunderstandings about the legitimately disabling effects of some hidden conditions, such as persons with mental impairments being regarded as deviant. The prevalence of acquired disabling conditions is profound in Vietnam due to the high incidence of construction site and traffic accidents as part of the nation’s economic boom. According to Handicap International, which operates a number of therapeutic and prevention programs for people with spinal cord injuries, these injuries are frequent and increasing in Vietnam due to a lack of safety conditions on building yards and on the road network. “The recent improvement of the socio-economic conditions in Vietnam (more particularly in the large cities) has significantly increased the number of motor vehicles and particularly the number of motorcycles which comprise approximately 80% of the traffic” (Handicap International, 2004, p. 64).


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During my time in Vietnam, over the course of a summer, I watched from my bedroom window as five-story homes grew like mushrooms around me, growing vertically almost overnight, and accomplished by the labor of everyday Vietnamese men, women and teenagers, all without helmets. One would see a professional crew involved only in the most specialized and heavy building activities, such as setting the steel I-beam inner cores of buildings. The flooring, roofing, tiling, finishing were predominantly accomplished by regular folks, families, and friends, it seemed to me. The traffic in the cities of Vietnam is famous for its density of motorcycles and motorbikes, frequently overburdened in transporting multiple passengers, groceries, construction equipment, and even panes of glass. Internet Web sites now feature video clips of this traffic to amaze foreigners with its recklessness. Today, NGOs are engaged to try and mitigate the risk of injury by providing helmets for children. The following excerpt from my field journal was written a few weeks into my time in Vietnam. It concerned the traffic and was written on the weekend of my first venture onto a motorbike. Most transportation in Vietnam is motorbike or bicycle and the streets are filled with them both, rode by whole families on single units, pregnant women, babes in arms, children wedged between parents, man doubling up with construction materials such as panes of glass between them, all in a motorized chaos mixed with pedestrians. Traffic lane markings and control lights are really just a suggestion. Cars are very rare, except for taxis, which I am using mainly, but tonight I was to ride and felt it was time. A volunteer showed up to get me and I hopped on and held his shoulders and off we went through the enclave and then we were out on the streets of Saigon, my first time out in it not in a taxi. Now I was truly among the masses of Vietnamese on the Volkswagen of Vietnam: the xe om (motorcycle). I was nervous at first, holding on tight to his shoulders and he could tell, asking me what I thought of the traffic, and then more directly, “Does the traffic make you nervous?” I relaxed my grip a bit. Sitting at stoplights with dozens of people on mopeds and motorcycles, whole families on single units, pregnant women, babes in arms, children wedged between parents, it all seems normal, not so daring, and almost safe. Young girls on the backs of bikes don’t hold on at all and even ride side-saddle. They flip through their purses or look in their shopping bags. As we got onto progressively busier streets, into the major roundabouts, down the big thoroughfares of District 1, I did begin to enjoy it. He was a fine driver, though he did take a cell phone call once mid-ride. As the evening progressed and we journeyed from the restaurant to a dark café and finally to home again, I became very comfortable with the ride, abandoned his shoulders for the handle behind me, which was actually much more comfortable, and was able to look around as we rode and enjoy the ride through this famed city, participating in the mode of transport which takes lives, causes disability, and inspires awe upon first sight. I felt a sense of accomplishment when I was returned home for having accepted the motorbike challenge and survived the ride. The traffic of Saigon was not so bad, it now seemed to me. The next morning I watched as a child ran out into the street and was hit by a motorcycle just a few feet from where I sat on the curb. I cried out. He spun like a top, running into the side of the moving bike and bouncing back, whipped around in a spin, then falling out flat upon the pavement. I jumped up. His mother came running into the street from the pharmacy where she had

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been and where it seems he had come running out. I backed away. The biker came to a stop and yelled to them. It was a bright Sunday morning and the neighborhood was busy. People came to doorways, the video game lady and my landlords and neighbors, though none intervened. I couldn’t look at the boy laid out and his mother kneeling over him and so I looked away for a moment to walk up the curb and onto the stoop of our guest house, also to just get out of the way. The house folk could see the shocked look on my face. I turned back to look and the woman was picking the boy up. He was conscious and perhaps in shock and she picked him up though he was a big boy, maybe even seven years old, and carried him hurriedly down the quiet cross street and into a nearby home. He didn’t begin to wail until they were nearly there. I had been reading these last couple of days a UNICEF report on Children with Disabilities in Vietnam. Traffic in this city alone is estimated to take five lives each day. Government and NGO efforts are now engaged in awareness campaigns and getting helmets to children. I have already been amazed at the independence of children here in the enclave, walking and playing in the streets with the countless bicycles and motorbikes dodging them. There are no sidewalks in Ho Chi Minh City and no yards, only a few parks and schoolyards. When we returned later that Sunday afternoon from the university in Thu Duc, we inquired with the video game lady downstairs if she knew any more about the boy and she indicated that no ambulance had come to the house, so he must be okay. If no injury is apparent, a poor family will forgo a trip to hospital, but who knows if there is damage: a chipped vertebrae or whiplash or closed head trauma may not immediately present itself to the family’s eyes. I will hope for the best for him. Maybe I needed to see this accident for myself. I had seen it up close and heard. The impact and the boy’s subsequent spinning are etched in my mind. I was terribly upset in the moments after witnessing the accident and was tempted to run to my flat and hide, not to go on about with the day, fearful of the effect of this event on my psyche here, on my dreams tonight, but fortunately my advisory team had soon arrived after the mother and boy disappeared into the home and we were suddenly in a taxi ourselves bound for our meeting at the university. Those first few moments in the taxi I was shaking, staring out bitterly at the traffic of Saigon.

STRANGE QUESTIONS People with disabilities traditionally and universally lack or are denied power to make their voices heard and, in Vietnam, this has been true. Only in contemporary Vietnam, where a grassroots disability movement is in nascent stages, are these voices beginning to find the clout and social influence that can be derived from authentic expression. The authentic voices of the people with disabilities in Vietnam are now expressing their truths to change policy and raise awareness of their potential to work, study, and succeed. My surveys would allow me to compare stories, identify common experiences of systems and society, and synthesize the stories into this shared story of a group people. I structured my questions in such a way as to invite subjective interpretation by each respondent and allow them to answer in a way they found suitable to their understanding of the question. The questions were designed to merely open up topics of conversation. To invite narratives, the questions


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prompted for recollections of experiences and allowed the respondent to freely structure their response (Riessman, 1993). I relied on my contacts within the organized disability movement, particularly the grassroots self-help clubs, to identify people to be surveyed. This resulted in most respondents being participants in these self-help clubs or recipients of these programs. The vocabulary and described values therefore may be characteristic of individuals who are acquainted with disability issues. For example, the use of the acronym PWD (Person with Disability) is popular among disability activists, and this was used frequently in responses. In another example, many of the people surveyed from a particular self-help club employed the phrase “inferiority complex” in reference to something they had overcome or which they hoped PWDs across Vietnam would one day overcome. One respondent explained that the club’s sponsor had taught her to overcome her inferiority complex. Respondents were found in large cities and middle-sized towns, but none were collected in small towns or rural settings due to the limitations on time and travel for the author. However, a few people referred to having been born in a rural or small town environment and then moving to a larger town or city in search of employment, education, or rehabilitation services. The following description from my journal about engaging a group of participants from a grant-writing workshop in completing my questions in a written survey was an important point of learning for me: Today was the Grant Writing Workshop and it was a great success! We had 25 students, which filled the room. The space was not air conditioned as I had been told it would be, but that was okay; it was hot, but a breeze rolled through the open doors and it was not unbearable. The students had a diversity of disabilities: at least four were blind, several were crutch users, several had walking impairments without assistive devices, one young woman was missing a hand. The able-bodied still identified themselves as being with self-help disabilities organizations. . . . At break time, we distributed the surveys for the students to complete for me. Several were perplexed by the questions, so we told them that these were “experimental” questions devised to allow them to answer in any way they chose and that if they could not answer any questions, this was alright, they could skip those. Upon preliminary review of the responses, only a few were returned with incomplete sections.

The final survey instrument was titled “The Voices of Persons with Disabilities (PWD) in Vietnam” and was made available in both English and Vietnamese versions. The first questions were intended to collect categorical demographic information about the respondents and therefore were structured by limited response fields or choices. 1. Please tell us your age and your gender. 2. Are you a person with disabilities? If Yes, for how long? Please circle your disabilities (mobility, mental, visual, hearing, or other). Please circle the cause of your disabilities (birth effect, traffic accident, labor accident, accident at home, war effect, or other).

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3. What is the highest level of education you have achieved? (never attended school, home schooling, or other). 4. Please describe your occupation. The remaining questions all provided large blank areas for narrative answers. 5. Can you describe a misunderstanding others frequently have about your abilities? 6. Can you describe the needs you might have related to your disability that no organization has been able to help you with enough or even at all? 7. Can you describe memorable experiences you have had when you searched for or contacted organizations to assist you with a need you had related to your disability? 8. Can you describe memorable experiences from when you were in school related to your disability? 9. What are your hopes and dreams for PWDs in Vietnam? The questions were distributed to leaders of self-help clubs and other disability activists to redistribute and return to the researcher. Answers were received in Vietnamese and the research team collaborated on translation into English. The translator and I discussed translation choices extensively to honor the particular meaning conveyed in Vietnamese and also to construct logical phrasing for the English translations.

DEMOGRAPHIC RESULTS: PEOPLE WITH DISABILITIES Sixty-two completed surveys were collected. Twelve respondents completed the survey with assistance from volunteers due to visual impairments. The respondents ranged in age from 13 to 66 years old. The average age was 27.6 years old, and the median age was 24 years old. Thirty respondents were female (48 percent) and 32 were male, (52 percent). Two thirds of respondents identified as having mobility impairments (64 percent, 40 respondents) and just under one third identified visual impairment (29 percent, 18 respondents). Another 2 percent identified mental impairments, and none identified hearing or speech impairments. Only 5 percent failed to identify their disability (see Table 16.1). The overrepresentation of mobility and visual impairments was related to the particular self-help clubs where recruitment occurred. In terms of the cause of their disabilities, 12 respondents (19 percent) indicated the presence of birth effects (e.g., Agent Orange, lack of vitamin A, petechial fever, poisonous chemicals from father, retinal detachment; see Table 16.2). One participant was born with a missing hand or arm (the respondent used the Vietnamese word that is imprecise and represents both hand and arm). Traffic accidents (6 percent), labor accidents (5 percent), and war (5 percent) accounted for 10 of the respondents (see Table 16.3). More than half of the respondents (55 percent) chose “other” as the cause of their disability. In providing further explanation of these other causes of


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disability, most respondents wrote “polio.” Only 10 percent of respondents declined to attribute a cause for their disability. The remaining causes included scarlet fever (two people), disease (two people) and fever, tuberculosis of the meninges, corneal disease, optic nerve paralysis, health condition resulting in paralysis, and sunlight (one person each) (see Table 16.4). Table 16.1 Self-Identified Types of Disabilities Derived from Survey Instrument Criteria Based on the Four Major Impairments Impairment Classification Mobility impairment Visual impairment Mental impairment Hearing or speech impairment Other No response Total

Response Count

Percent of Total Reponses

40 18 1 0 0 3 62

64 29 2 0 0 5 100

Table 16.2 Explanations for the Choice of Birth Effect as to the Cause of Disability. of 12 Respondents Who Chose Birth Effect, 6 Opted to Explain Further Explanation for Disability Cause: Birth Effect

Response Count

Agent Orange Lack of vitamin A Born missing left hand/arm (respondent employed a Vietnamese word that is imprecise and represents both hand and arm synonymously) Petechial fever Poisonous chemicals from father Retina fell off Total

Table 16.3

1 1 1

1 1 1 6

Cause of Disability as Guided by Survey Instrument Criteria

Cause of Disability Birth effect Labor Traffic War effect Other (See Table 16.4 for further explanations) No response Total

Response Count

Percent of Total Responses

12 3 4 3 34

19 5 6 5 55

6 62

10 100

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THE CONTEXT: ENVIRONMENTAL, SOCIAL, AND CULTURAL CONSIDERATIONS Table 16.4 Explanations for the Choice of Other as to the Cause of Disability. Explanation for Disability Cause: Other Polio Scarlet fever Disease Fever Tuberculosis of the meninges Corneal disease Optic nerve paralysis Health condition resulting in paralysis Sunlight Total

Response Count 24 2 2 1 1 1 1 1 1 34

QUALITATIVE RESULTS: EMERGING THEMES The content of the responses allowed me to group the personal stories thematically. Although these themes were often elicited by different questions, the stories emerged with considerable cohesion and corroboration. Stories are presented in the following order, followed by a discussion of any unique survey responses: 1. 2. 3. 4. 5.

Raising issues of employment (emerging from multiple questions) Raising issues of education (emerging from multiple questions) Other unmet needs (from question 6) Memories of school time (from question 8) Hopes and dreams for PWDs in Vietnam (from question 9).

1. Raising Issues of Employment The need for stable and appropriate employment opportunities was the single greatest concern expressed by survey respondents. Employment issues were raised in answers to the three questions, “Can you describe a misunderstanding others frequently have about your abilities?” “Can you describe the needs you might have related to your disability that no organization has been able to help you with enough or even at all?” and “Can you describe memorable experiences you have had when you searched for or contacted organizations to assist you with a need you had related to your disability?” Respondents wrote about need for gainful employment, accommodation in the workplace, and social acceptance for pursuing employment. “People don’t believe in my working ability,” wrote a 26-year-old male, mobility impaired from polio. Other responses raising issues of employment included the following. [I was] looking for a job after graduation but most of the companies don’t accept PWDs. (24-year-old male, mobility impaired from polio)


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I really need a job to have a stable salary and really wish to have jobs I can work at home in order to be comfortable for my moving and daily life. (42-year-old male, mobility impaired from labor accident) I need jobs that are appropriate to my health, such as always having to sit on a wheelchair. After two hours of working I must rest for five minutes. In the workplace there should be toilets that wheelchairs can access. (42-year-old male, mobility impaired from labor accident) I wish there are certain places that help me have a stable job in the future so I can take care of myself. (23-year-old female, mobility impaired from polio) In 1995, I went to a joint-venture sewing company to ask to work there. They thought I wasn’t a PWD at first so they accepted. But when I worked with the machine, they realized I have a disability so they refused. (29-year-old female, mobility impaired by polio) Employers ask for nice appearance from applicants. Can PWD fit that requirement? (25-year-old female, mobility impaired from polio)

In the responses to the question about hopes and dreams for PWDs in Vietnam, employment was also the most common thread. Out of 62 responses to this question, 24 included a reference to employment, with seven of those qualifying the hope even further with the expression “stable job.” Many respondents also framed their hope for jobs as not just for their personal benefit but for all PWDs in society.

2. Raising Issues of Education Although a question in the survey asked specifically for memories related to educational experiences, many respondents utilized earlier questions to raise issues relating to education. Three questions (about others’ misunderstandings, unmet needs, and memorable experiences when searching for organizational assistance) elicited issues about participation in educational opportunities. These responses echoed many of the barriers experienced in employment. Responses included: When I asked to go to school, I was refused. They say, the blind cannot do anything, so you cannot study. (19-year-old female with visual impairment from birth) I felt sad because I was refused to take English class. (23-year-old female with visual impairment from scarlet fever) People often feel suspicious about my education. They assume I will not be able to do anything after graduation. (24-year-old male with mobility impairment from polio) Studying materials for the blind my university does not have. (27-year-old male with visual impairment from disease) I’m not accepted to go to school. In sighted school, I didn’t see well. In blind school, I see very well. So, both schools don’t accept me. (13-year-old male, ethnic minority, with visual impairment from birth) I need elevators in the companies or universities where I study at. There’s very few universities have elevators, the most of them don’t. I’m taking evening classes in a university where I have to climb the stairs to the third or fifth floor everyday. (24-year-old female, mobility impaired from birth)

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3. Other Unmet Needs The question “Can you describe the needs you might have related to your disability that no organization has been able to help you with enough or even at all?” yielded a variety of concerns in addition to employment and education. Comments included public accessibility, funding for grassroots activities, and advancement of medical services and treatments. The highlights included: I asked the Student Communist Party to help my disabled association but they refused. (24-year-old male, mobility impairment from polio) We wish the society to change their thinking which is not yet right for PWDs such as their learning ability, working capacity, and social activities, in order for PWDs to integrate into the community. (61-year-old male, visual impairment from war) [I searched for] an eyes operation that Vietnam is not able to do. (24-year-old male, visual and verbal impairments, attributed to “disease”) Be able to have health checks, be guided how to limit side effects or complications because of disabilities. For example, how to treat spinal twisting for people who are mobility impaired. (24-year-old male, mobility impairment from polio) I wish PWDs have priority in medical checks and treatment because we the PWDs can’t wait in line right now. When I went to Tu Du Maternal hospital to check for my infertility, they didn’t give priority for women with disability. I waited from mornings to the afternoons but there wasn’t my turn yet. I couldn’t be patient enough to wait for the hospital’s “favor” so I said goodbye to the hospital after three times waiting there. (42-year-old female, mobility impairment from polio) My need is to be integrated in the community and wish to have equality with people without disabilities. (24-year-old female with mobility impairment from birth)

4. Memories of School Time When asked to recount memorable experiences related to their disability from when they were in school, answers ranged from appreciative to critical, from both inclusive to special educational settings, and for both childhood and adult education. Positive memories of being assisted or encouraged by peers and faculty in both mainstream and special educational settings were prevalent, such as, “When I was in school, my friends helped me, cared for me, and accompanied me so I could overcome three years in high school” and “I have sympathies from my teachers, as well as from friends, and have encouragement from school and it is a memory I can’t forget.” Other appreciative comments included: I often fall down on the ground and my friends usually help me to stand up. (24-year-old male with mobility impairment from polio) When I integrated with other PWDs, I realized that when your friends are weaker than you, you can help them by moving the wheelchairs for them or passing the rice to them. (27-year-old female with mobility impairment from polio)


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I have lots of friends who are not disabled. They don’t discriminate. We play with each other impartially and they always listen to my ideas. This makes me feel very confident and sometimes I forget I am a PWD. (28-year-old female with mobility impairment from polio) Since I was born, I haven’t taken part in any school for PWDs because my home town is very poor and has no resources to open a sheltered school. When I came to Ho Chi Minh City, there are friends who led me to join the disabled youth club. Here, I can make friends, study, and join other activities. My memorable experience is in the club many teachers usually hold cultural and musical exchange with other PWDs. The smiling faces are the things I remember most. (24-year-old female with mobility impairment from birth; cited Agent Orange as cause of her disability) In 1999, from a newspaper I learned there was a vocational training program for PWDs. Upon arriving, I was really surprised when I was welcomed cordially and was guided whole-heartedly to take A-level applied computer class. Nowadays, from the help of that center, I have computer certification as a technician which serves in the job I am doing. (29-year-old female with mobility impairment from polio)

Memories of the awkward uniqueness of being a PWD in a mainstream school were recurring in the responses and are captured in the following statement by a 19-year-old with a visual impairment: “In school, I have to sit really close to the board to see and write, so my friends devour me with their eyes.” Other narratives included: In schools and university, I had to stay in class at gym time and military training time. I was very lonely and upset. When it was raining and slippery during my teenage years, I remember falling down on the ground among the crowd. I also had to hold the back of my friend’s bike to walk during my university time, I was very nervous and shy because of everybody’s eyes around me. When I became a teacher, one day I walked from the teachers’ room to the school yard to salute the flag. I stepped on a wire and fell down in front of other teachers and all of the students. The bread in my bag spilled out as well. I was very shy in front of my colleagues and the students. (48-year-old female with mobility impairment from polio) I started to have inclusive education. My teacher held my hand and walked me into the room and everybody teased me because they thought I was getting special care, not realizing I was blind. (22-year-old female with visual impairment, cause not stated) When I was six I went to school and I was teased by other friends and they call each other to come and see me and they watched me and they asked each other why I only had one arm and I cried and I ran home crying. (24-year-old female with mobility impairment from birth)

Memories of having to self-advocate for systems change or accommodation included: My university has nine floors but when I was in the first year, I realized that elevators were just for teachers and staff. I talked with my dean and principal about this and after that we the students with disabilities were allowed to use the elevators. (28-year-old female with mobility impairment from polio)

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I passed the entrance exam to Hanoi Teacher Training University in 1971, but because I had an eye problem, I wasn’t allowed to study there. Me and two other individuals had to have the help of the chairperson of MOET [Ministry of Education and Training] and then we were allowed to study there. (61-year-old male with visual impairment from war effect) When I was in 11th grade, I happened to hear news from the radio saying that PWDs could have free tuition fees according to how serious their disability was. However, when I asked my school about this, they said it didn’t exist. I was very surprised and wrote a letter to the radio station to ask about that and then the Educational and Training office reprimanded the principal of my school and then I didn’t have to pay the tuition fee. (24-year-old female with mobility impairment from birth)

5. Hopes and Dreams for PWDs in Vietnam The final survey question, “What are your hopes and dreams for PWDs in Vietnam?” included recurring calls for stable employment (24 people), educational opportunities (13 people), social inclusion (17 people), and happiness (13 people). Other responses included the hope for benefactors (17 people) and concern from society (13 people) (see Table 16.5). Example comments made by respondents were: Every person with disability has a stable life and job and happiness to all of them. (24-year-old male, mobility impairment from polio) Integrate more and more in society. More and more PWDs are able to go to school and have stable jobs. (42-year-old male, visually impairment from labor accident 13 years ago) I dream and hope that PWDs in Vietnam get what is good for them and always love their lives and live more pleasantly. (23-year-old female, mobility impairment from polio) I hope everybody around the world help us and are concerned for us and people in Vietnam have to give all conditions to us so we can overcome difficulties in life. (19-year-old male, visually impairment from sunlight) I have a wish and that is the benefactors and government always concerned with PWDs more and more so that they have a job to work and to feed themselves. I wish companies and organizations help PWDs. And my bigger wish is PWDs, let’s try to overcome. (23-year-old female, mobility impairment from traffic accident 3 years ago) Table 16.5 Most Prevalent Response Themes in Answer to the Question, “What Are Your Hopes and Dreams for PWDs in Vietnam?” Hopes and Dreams Jobs Concern from society Integration in community life Education opportunities Happiness Benefactors

Response Count 24 17 17 13 13 11


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The biggest dream of mine is to have appropriate concern from the community and society; have job, as well as the minimum facilities that are appropriate to each specific physical condition. For example, can go to working place by wheel chair, go to toilet, and participate in sport activities in each province. (42-yearold male, mobility impairment from labor accident 10 years ago) Every PWD wishes to have care from the society so that they can have opportunities to have appropriate jobs, stable life, and integrate in their community. (61-year-old male, mobility impairment from war effect 39 years ago) I wish to have lots of supporting means and service for PWD in our country, i.e., equipment on busses so that wheelchairs can access. (28-year-old female, mobility impairment from polio) I hope PWDs in the Vietnam get over their difficulties, don’t feel shy in front of others, have stable life, and are always happy. (34-year-old female, mobility impairment from polio)

Although the open survey queries yielded trends and common concerns, as shown in the previous sections, the goal of the survey was not to quantify opinions so much as to record authentic voices, and thus unique responses elicited from various questions must be presented as well. These responses did not appear as frequently across the respondents, but reflected an important aspect of the experiences of PWD. People look at me with strange eyes when I am moving on my handshake wheelchair because they think I am a lottery seller.1 (23-year-old female with mobility impairment from polio) People define PWDs by a different eye, the eye that is scared of the PWDs. (21year-old female with mobility impairment) We once practiced singing and there was a teacher coming to our homes to help us practice. Day after day we were just sitting when practicing. As the performance date neared, the teacher asked me to stand up and perform. He thought I have healthy arms. He told me, “You must reach out your hand and perform.” That day, I asked him, “You’ve been practicing with us all of these days but you don’t even know that I am PWD!” He shrugged his shoulders and said, “Sorry.” ’ (23-year-old female with mobility impairment from traffic accident) When I joined the social security club,2 which is now the disabled club where I live, when people saw me they thought I couldn’t do anything without one hand, but I did the laundry, and people wanted to do it for me because everybody tries to outdo each other, but I could do it myself and they were really surprised. (24-year-old female with mobility impairment from birth) A misunderstanding between my close friend’s mother and me. He is just a close friend, but his mother thought we were together, so she came up to me and spoke frankly with me to not block his future. I was very sad because she saw me as her child but not as her son’s girlfriend. (22-year-old female with mobility impairment from polio) In my high school, I had to study in a school that was 3 km from my house. Sometimes I had to walk. I wished to have a hand-shake wheelchair, but I did not know where to ask for one and my family was very poor and in my hometown PWDs were so disadvantaged that they didn’t have any place that offered standard crutches. We had to buy them from other places or use patchy crutches to help ourselves. (22-year-old female with mobility impairment from polio)

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THE JOURNEY TO THE MEKONG The experience of being a Vietnamese with disability is no different from being a PWD in any other country, developed or developing. When asked, the person with a disability wants to work; learn; be meaningfully engaged in their community; have respect, autonomy, and equality; and be understood. They also express a hope for the realization of things only imagined: treatments and services and attitudinal shifts, not only for their own individual experience but for the experience of others, their peers, and those who will come after them, and for their society at large. There is a desire to have an acknowledged identity, both personal and global, from the girl wanting to be regarded for her abilities at the sewing machine to the boy looking to the international community to bring treatments currently unavailable in his country. By sharing our stories, PWD increase the understanding others have about our circumstances and possibly inspire them to act, not only to respond to the call of another person but to positively impact the world they share with PWDs in a way that will continue beyond them. I close this chapter with another selection from my journal, written late in the fieldwork experience, concerning my journey out of Ho Chi Minh City and down into the Mekong River delta and the small city of Can Tho. This is a beautiful region. Can Tho has a much slower pace than that of the megacities of Ho Chi Minh and Hanoi. Set beside the Mekong River with all of its floating commercial activity, its misty, tropical atmosphere instantly won my heart. For the PWDs with whom I met and the self-help work they were doing, I have great affection. I hope this passage captures that affection. Reading it now takes me back to Vietnam, my experiences there, and the voices of in PWDs in Vietnam that are stored fondly in my mind. We have arrived in Can Tho after a long van ride. The journey was disappointingly less rural than I had hoped, with the two-lane highway dotted by crowded small towns the entire route. Only on occasion did we see a rice field, women in cone hats bent over working in it, sarcophagi of dead ancestors on concrete slabs rising from the fields on the periphery, small white monuments in the family rice fields. More water and frequent bridges characterize this region, with small canals and streams and large river bodies. Many shirtless men along the trip, either working or lounging in hammocks; one woman who seemed to have dipped into a canal beside the road for a wash or to cool was emerging bare breasted, pulling on a dress. At the River Mekong we arrived at the boarding docks for the ferry to cross to Can Tho. The place was like a market of desperation, with trash strewn about, people coming up to the cars to sell produce or bottled water or lottery tickets. A man without hands on either arm banged his stumps against my window begging repeatedly. This was a harried experience, with us passengers getting out of the van and walking through the ticket line with many others, bicycles and motorcycles, children. I saw a man slip on his brake on his motorcycle while we were together paused in line for the ferry and his toddler in his lap lurched to the side and banged his head on the iron gate. The mother and other women standing beside were all upset by this and hugged and passed the child among them. Finally, we boarded the ferry, an iron furnace in the sun all day, emblazoned with Danish-Vietnamese flags and branding, and we climbed to the upper deck


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to view the river scene and its opposing shores for the short voyage to Can Tho. We watch the fishermen and vendors boating in fruits and vegetables and passenger ferries unloading these cargos at the docks. It was quite idyllic watching the women in cone hats in their long shallow boats mooring alone with long poles, silhouetted in the morning sun and river mist.

NOTES I thank everyone engaged with Hop Tac Tre YMCA of Vietnam and those who served on my advisory team: Luu Van Loc, Tran Van Trung, Le Quy Ha, Truong Vu Thuy Loan, Tran Ba Thien, and Grace Mishler. Grace is a licensed social worker and a teacher whose longtime work in Vietnam made so much possible for me. Her connections, insight, and faith brought many wonderful people together and made many unforgettable events develop around me. Her dedication to the people living with disabilities in Vietnam and around the world is boundless, and her resolve to continue working side by side with them is inspirational. Finally, my gratitude is immense for Le Kim An Nhien. An Nhien served as my research assistant, translator, travel companion, colleague, and friend. We agreed on many things in the daily decision making, scheduling, and translations, and without her, my time in Vietnam may not have been so abundantly fruitful. Her professionalism as a sociologist and sincere concern for others make her an asset to her country. My experience of being immersed in Vietnam was one of awe and humility, humor and challenge. My most wonderful memories are of the people I am so fortunate to call my friends in Vietnam. The Vietnamese people with disabilities warmly welcomed me and shared their hearts with me, for which I am so grateful and humbled. I am particularly honored to know the disability activists who are working so hard at the grassroots level to make real those hopes and dreams of PWDs in Vietnam. 1. Selling lottery tickets is a common vocation of persons with disabilities in Vietnam. Roaming lottery sellers are frequently seen on city streets using handshake wheelchairs or white canes. 2. This is a reference to a group home environment for PWD. The same respondent answered elsewhere that they now “live and study with other PWDs who have the same problems and since then I feel that my life is useful. Since then, I no longer feel inferiority complex and it changed me so far from a person with inferiority complex to one with courage, who is brave and has a will.”

REFERENCES Booth, T. (1996). “Sounds of silence”: Narrative research with inarticulate subjects. In Disability and Society: Emerging Issues and Insights (Longman Sociology Series). London: Longman. Handicap International. (2004). Vietnam annual report. Ho Chi Minh City: Author. Kane, T. (1999). Disability in Vietnam in 1999: A meta-analysis of the data. Washington, DC: U.S. Agency for International Development. National Assembly of the Socialist Republic of Vietnam. (2006). Social Affairs Committee report on disability. Ho Chi Minh City. Riessman, C. K. (1993). Narrative analysis. London: Sage. World Bank. (2007). Vietnam: Laying the foundation for steady growth (Country Brief). Washington, DC: Author.


CHAPTER 17

Substance Use Disorders and Disability: An Examination of Co-occurring Disorders in Nigeria Stephanie L. Lusk and Teresia M. Paul

R

esearch has shown repeatedly that substance use and its associated problems have manifested themselves worldwide, and Nigeria is no exception. According to Odejide (An Overview of Substance Abuse Prevention and Treatment in Nigeria, unpublished paper, n.d.; 1989), problems with substance use disorders have grown continuously within Nigeria, affecting all aspects of its culture. Alcohol, cannabis, and amphetamines were more prominent in Nigeria in the 1960s, whereas in the 1970s and 1980s, drugs such as benzodiazepines and barbiturates were added to the list of most commonly abused drugs. By the 1980s, drug trafficking had come into prominence, and substances such as cocaine, heroin, cannabis, pemoline (used to treat attention deficit-hyperactivity disorder and narcolepsy), ephedrine, and pethidine (a synthetic narcotic drug) were introduced to more individuals in more areas across Nigeria. The United States is continuing to encounter individuals from a variety of cultures and ethnic groups, and to effectively assist and serve these individuals, it is imperative that one understands their worldview. In understanding their worldview, it is also important to better understand who we are as Americans and what is required to move forward in creating a world that is culturally sensitive and responsive to the needs of others. One trend that has been noted across all nations is the need for culturally responsive mental health services and addiction treatment. However, there is an astounding lack of information on evidence-based treatments and best practices for different cultures, especially for some African countries. Nigeria is one country in particular that has lacked research on mental health, culture, and best practices for providing treatment for mental illness and addiction. However,

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as this problem continues to grow, so do the number of professionals who are conducting research and providing prevention, intervention, and treatment services. To learn more about the mental health system and the role of culture in Nigeria, we developed a qualitative research project, from which this chapter is solely based, that focused on the relationship between substance abuse, mental illness, Nigerian culture, and the influence of American stereotypes on substance use. The project involved participation in cultural activities and interviewing numerous mental health professionals, psychiatrists, social workers, and individuals in community agencies across Nigeria. The goal of this research was threefold in that it was to (a) assist in helping us gain a better understanding of Nigerian culture and its unique needs and concerns in relation to substance use disorders and its impact on mental illness, (b) assist in highlighting how important culture is in regard to the provision of appropriate treatment, and (c) assist in establishing best practices that can be used when counseling individuals from this culture. With the growing number of students and individuals immigrating to the United States from Nigeria, this chapter becomes globally relevant. Individuals who are suffering from mental health and substance abuse disorders do not suffer alone—their families are affected as well. These effects ripple out through the community, the nation, and eventually across the globe. Understanding and developing appropriate services is an important reason for studying culture, and it is also important to understand how culture impacts other issues related to drugs, such as trafficking and the connection to religious and cultural ceremonies. Vesely (2000) noted the presence of major drug trafficking operations in Nigeria and observed that Nigerian women have become major players in the trafficking of illicit drugs. It is important for us to better comprehend the dynamics of the Nigerian culture and its relationship to drugs if we are to provide better services to those affected by drugs and continue to fight the war on drugs. Designing culturally responsive substance abuse programs requires careful examination of the target population’s unique characteristics and cultural heritage (Atkinson & Hackett, 2004). Nigeria is a country that has been overlooked by the world of academia and neglected in terms of substance abuse and mental illness treatment. Although every racial/ethnic minority group is characterized by unique cultural, migratory, social, economic, and political experiences, three themes are prevalent in Nigerian culture: (a) family structure, (b) cultural healing, and (c) spiritual beliefs (Robinson, 2005). These concepts are at the foundation of Nigerian culture and permeate the field of mental health and substance abuse treatment.

A BRIEF LOOK AT NIGERIAN HISTORY Nigeria has ties to civilization as early as 500 B.C.E., when the Nok people roamed the Earth. Nigeria was an official British colony, but gained its independence in 1960 and became a republic in 1963. After gaining independence, conflict arose between ethnic groups and a civil war erupted throughout the

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nation from 1967 to 1970. Over 1 million Nigerians are estimated to have died during the civil war, and the effects are still seen today (Falola, 1999). Although Nigeria has slowly worked toward a democratic government system, military dictators meant that the country saw some of the bloodiest military coups and human rights violations against civilians (Oyeshile, 2004). Elections have been plagued by corruption, greed, tribalism, violence, and oppression. Political leaders have mismanaged the country’s lucrative oil resources and catapulted Nigeria into economic turmoil (Ake, 1996; Oyeshile, 2004). Injustice, marginalization, and ethnic conflict have created a structural imbalance in Nigeria’s political and governmental system. Fortunately, two international foundations, the African Union (AU) and the New Partnership for Africa’s Development (NEPAD) have been established to aid with debt relief, economic aid, employing democracy, and combating political instability (Ake, 1996; Oyeshile, 2004).

Demographics of Nigeria In 2007, the population is estimated to have reached 128.8 million, which includes over 250 different and unique ethnic groups that speak over 250 different languages. The largest ethnic groups in Nigeria include Hausa (21 percent of the population), Yoruba (20 percent), Ibo (17 percent), and the Fulani (9 percent) and a range of other smaller ethnic groups (33 percent) (Falola, 2001). Each ethnic group has a distinct cultural legacy and heritage that is infused in the broader Nigerian culture. Although English is the official language of Nigeria, less than half of Nigerians can actually speak it. A mixture of English and local language (pidgin English) is often used to communicate between ethnic groups. Nigerians often become fluent in many languages and dialects, although they will have a “host language” depending on the area in which they live (Falola, 1999, 2001). Language is also tied to religion. The religions of Nigeria are Islam and Christianity. Individuals residing in the north are primarily Muslim (50 percent), and those residing in the southeast are Christians (40 percent) (Falola, 1999, 2001). The remaining 10 percent of the population follow traditional Nigerian belief systems that differ from state to state. Many Muslims and Christians incorporate these traditional African belief systems and Indigenous traditions into their religious practices. In the northern regions of Nigeria, Muslims have written Shari’a law into the constitution. Shari’a law is a policy with moral guidelines that can be instituted in court proceedings. However, many Nigerians, and particularly Christians disagree with Shari’a law, which has fueled a growing conflict in Nigeria.

Cultural Dynamics Nigerians will identify first with their ethnicity, followed by their religion, and finally their nationality. This has proven to be a barrier to Nigerian unification and sovereignty. Conflicts based on religion or ethnicity have been at the core of many Nigerian civil wars and riots (Falola, 1999; Oyeshile, 2004).

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Nigerians take pride in their culture and heritage, and of utmost importance is the family. The family system in Nigeria is a source of strength and organization, serving as the moral center for individuals and influencing the path an individual takes in life. Family systems are extensive, usually including extended family, and are often a closed system. Families tend to reside together in familial compounds, especially in rural regions of Nigeria. The family is male-dominated, and the male head of household makes all major decisions for members of the family. Respect for elders is taught at a very young age and is also common across ethnic groups. Nigerians have maintained their high level of respect for elders by preserving the closed family system (Falola, 2001). Child-rearing is similar to the concept of “being seen and not heard,” and respect for adults is embedded in the moral teachings of children. Depending on religious affiliations, some families may practice polygamy, which creates a larger network of familial relations. Polygamy is common in Nigeria across all religions (Falola, 2001). Before a man can introduce a new wife into the family, he must have permission from his family, including support from his wife or wives. He must also prove he can financially support a new wife. Family is just a small part of Nigerian cultural identity, and it is important to understanding social issues such as mental illness and drug abuse.

MOST COMMONLY ABUSED DRUGS The drugs most commonly abused in Nigeria today are very similar to those we have seen in the United States. Presently, the most commonly abused substances according to Odejide (1989) are (a) alcohol, (b) tobacco, (c) igbo (marijuana, Indian hemp), (d) stimulants/mild stimulants, and (e) hypnosedatives.

Alcohol and Tobacco Alcohol is the most commonly abused legal drug almost everywhere, including Nigeria. Initially, the production of alcohol in Nigeria was local. Thus, limited quantities were produced, and rates of misuse were low and seldom reported. Drinks such as palm wine (ogogoro) and ferments of cereals such as corn (burukutu) were a common part of the culture. Palm wine is reportedly used in religious celebrations and ceremonies and for everyday drinking. Children have access to these drinks because they are commonplace in Nigerian society. Most individuals do not view alcohol as a drug, which, when coupled with its easy access, increases the potential for abuse. Before the Nigerian civil war of 1967–1970, little attention was paid to the drinking problems that were beginning to emerge, particularly in males (Odejide, n.d.; Odejide & Ohaeri, 1989). Males were drinking heavier amounts and developing pathological problems that required hospitalization. Alcohol abuse was crossing ethnic, social, religious, and even gender lines. Even though males still dominated treatment facilities for alcohol abuse and addictions, the rates of women abusing alcohol had increased dramatically (Odejide, 1989).


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This rise in alcohol consumption was due to an increase in the number of breweries and industries that produced spirits. There were only 7 breweries in Nigeria in 1977; this number increased to 34 by 1985 (Odejide, 1989). Thirteen more industries that produced distilled liquors or wine were built during this time. The volume of wine and spirits produced increased from 1.0 million hectoliters (1 hectoliter = 26.4 gallons) in 1982 to 5.9 million hectoliters in 1983. Following this increase in production, corresponding increases in consumption, addiction, and treatment were seen. Alcohol-related disorders were seen in women and students. Alcohol-related social pathologies (e.g., lack of parental control, dropping out of school, accidents, criminal offenses, family disruption), health problems (including HIV/AIDS), and financial problems also increased (Odejide, 1989). The rates of smoking for males and females have also consistently increased over the past years for males and females. In 1990, approximately 15.4 million males and 1.7 million females smoked. These numbers increased to 23.9 million males and 17 million females in 2001 (World Health Organization, 2008). Obot (1990) observed that individuals who were poor and uneducated smoked more than those of higher socioeconomic and education status. Also observed was that these individuals had higher incidences of health problems and were generally unaware of the correlation between smoking and these problems. According to the British American Tobacco Web site (2008), the volume of tobacco produced in Nigeria increased from 1,260 tons in 2001 to 2,230 tons in 2004, and the number of growers increased from 899 to 1896.

Igbo (Cannabis, Indian Hemp, Marijuana) Igbo was relatively unknown in Nigeria until after World War II (Klein, 1999). This herb was brought back to Nigeria by soldiers returning from war. It spread quickly across the nation and became associated with individuals who were considered to have “loose morals” (Klein, 1999, p. 55). There have been several laws passed in Nigeria that prohibit the use of cannabis, such as the Indian Hemp Decree of 1966 and the Indian Hemp Amendment Act of 1975. However, none of these laws have been effectively enforced. Researchers have hypothesized that the use of cannabis is primarily for selfmedication (i.e., to reduce or alleviate the psychiatric symptoms or stress; Green, Drake, Brunette, & Noordsy, 2007). Cannabis is domestically produced and is considered by some to be the biggest danger to Nigeria (Klein, 1999). In 1960, Lambo (as cited in Odejide, 1989) noted a correlation between cannabis use, maladaptive behaviors, and psychiatric disorders.

Stimulants/Mild Stimulants The abuse of “Superman pills” or stimulants such as amphetamine, methamphetamine, and the prescription drug Ritalin (methylphenidate) is growing in popularity within Nigeria (Odejide, 1989, p. 14). Coffee, tea, and kola nuts are milder stimulants that are also readily available and widely used. Cocaine use was relatively unheard of until the 1980s, when drug trafficking became

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more prominent in Nigeria. Intravenous use of cocaine has not been widely reported, which has reduced the risk of transmitting bloodborne pathogens, such as HIV/AIDS and hepatitis C (Odejide, n.d.). However, Adelekan (1996; as cited in Odejide, n.d.), found that intravenous injection of these drugs is increasing. Individuals who have been admitted to psychiatric hospitals for complications related to stimulant use/abuse have been found to suffer from schizophrenia-like psychosis, toxic psychosis, affective psychosis, anxiety states, personality disorders, and “brain-fag syndrome” (Odejide, n.d., p. 10). Brain fag is identified as a culture-bound syndrome by the American Psychiatric Association within the Diagnostic and Statistical Manual, fourth edition, text revision (2000). It was initially identified in West Africa and is defined as “a condition experienced by high school or university students in response to the challenges of schooling. Symptoms may include difficulties in concentrating, remembering, and thinking” (p. 900). These students may also experience pain and pressure around the head and neck and blurring of vision.

Hypnosedatives The most commonly abused sedatives in Nigeria are benzodiazepines, such as Valium (diazepam), and barbiturates. Often, these drugs are prescribed by physicians to patients who are seeking to self-medicate underlying psychiatric conditions (Odejide, n.d.). Women are more likely to abuse drugs in this class, and they generally seek benzodiazepines to relieve anxiety (Odejide, 1989).

THE COMBINATION OF SUBSTANCE ABUSE AND MENTAL ILLNESS Mental illness is still considered taboo in Nigeria. Most individuals believe such disorders as being caused by evil spirits or as punishment for the wrongdoing of ancestors. As a result, the occurrence of mental illnesses in Nigeria is underestimated. Other reasons for this underestimation of mental illness include lack of appropriate assessment and the inability to classify those who may not meet the full criteria for a disorder (Gureje, Lasebikan, Kola, & Makanjuola, 2006). It is well known that there is a link between substance use disorders and either a diagnosed mental illness, such as depression, psychotic disorder, or anxiety disorder (Green et al., 2007). Researchers in Nigeria noted that individuals seeking treatment were generally young males with psychotic behaviors. Odejide (1989) noted that these individuals were likely to have “defective personality development” (p. 11) and a history of unstable families and parental deprivation. Both privileged and less privileged socioeconomic backgrounds in Nigeria were equally likely to abuse cannabis (Ihezue, 1988). Odejide (1989) found that males who displayed chronic cannabis use were likely to drop out of school. The most common disorders observed in Nigeria are drug-induced psychosis, schizophrenia, affective or mood disorders (bipolar I, II, and depression),


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and organic mental disorders (Abiona, Fatoye, & Okwerekwu, 2006). More often than not, individuals with mental illness seek the help of a religious leader or traditional healer before seeking assistance from a hospital or other therapeutic setting. For example, religious leaders may perform an exorcism or traditional healers may prescribe a herbal remedy. If there is no relief through these resources, treatment may be sought at a psychiatric hospital as a last resort. When the individual finally enters treatment, they have worse symptoms due to delayed treatment. They may also present not only with the psychiatric illnesses, they may also have acquired physical ailments as a result of traditional treatments (personal communication, Dr. Victor Lasebikan, New World Specialist Hospital, Ibadan, Nigeria; June 25, 2007).

USERS AND ABUSERS OF SUBSTANCES Area Boys From the foregoing research, individuals, particularly males, in Nigeria have a tendency to begin experimenting with substances very early on. These individuals often find themselves unemployed and addicted to drugs and engaged in a plethora of illegal activities to support their habits. As a result, these men have been dubbed “area boys” by their peers. Because of their mobility, it is difficult to determine their numbers. These young men are more likely to be addicted to drugs that are cheap and readily available, such as alcohol and cannabis (Morakinyo & Odejide, 2003). The street cost of cannabis is cheaper than the cost of some brands of cigarettes and can be bought from petty traders. Even though these youths abused cannabis, this study showed that they were less likely to use drugs such as hypnosedatives, solvents, cocaine, and heroin. This is thought to be due to the higher cost associated with these drugs. Positively correlated to drug use was the length of time these young men lived on the streets (Morakinyo & Odejide, 2003). It is believed that drug use serves as a coping mechanism for these individuals; it helps them deal with the many adverse situations they may face such as poverty, loss of family ties, unemployment, and so on.

Inmates The Nigerian Drug Law Enforcement Agency (NDLEA) noted that drug use was spreading at a rapid rate across the country. This organization believed that drug use was leading to activities that promoted the break-up of the family and the civil unrest leading to poor implementation of laws and policies. The creation and leadership of this organization has lead to the arrest of over 3,000 individuals who were involved in drug activities such as trafficking and selling drugs (Klein, 1999). Klein (1999) noted a large portion of individuals are incarcerated because of these drug-related offenses. Harsh penalties have been assigned to these individuals, such as imprisonment for up to 25 years, and General Musa Bamayi, who has served as chairman of NDLEA, even advocated for the death penalty for these individuals (Klein, 1999). Amdzaranda Fatoye, Oyebanji, Ogunro, and Fatoye (Psychoactive Substance Use and Associated Factors amongst a Sample of Prison Inmates in

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Nigeria, unpublished study) found that there were several common sociodemographic factors found among those incarcerated. Found in this study were nine variables strongly associated with current drug use: (a) unemployment, (b) being a sentenced prisoner, (c) previous mental disorder, (d) previous arrest(s) for drug offenses, (e) being charged for a major offense, (f) previous imprisonment, (g) longer duration of imprisonment, (h) being male, and (i) belonging to a higher age group. While all drugs included in this study correlated significantly to these nine variables, some presented extremely strong relationships. Individuals who abused tobacco were more likely to have previous drug arrests. Previous arrest for drugs and committing a major violent crime were acts more likely seen among those who abused alcohol. Cannabis use was associated with high correlations between previous drug arrests, previous imprisonment, and higher age group. Substances most likely used among this population included tobacco, hypnosedatives, alcohol, stimulants, cannabis, morphine, inhalants, cocaine, and heroin. Most notable was that large portions of their sample reported heavy use; 68 percent of tobacco users, 71 percent of cocaine users, 34 percent of alcohol users, 31 percent of stimulant users, and 12 percent of hypnosedatives users.

Commercial Workers An increase in traffic accidents related to alcohol and other drug consumption have been documented in Nigeria (Abiona, Aboba, & Fatoye, 2006). It is a known fact that individuals under the influence of substances have poor judgment, decreased response time and decision-making abilities, impaired vision, problems with coordination, and slowed reflex skills (Doweiko, 2002). As a result, there is an increased likelihood of traffic accidents for individuals who choose to drive while under the influence. The results of these accidents can possibly lead to disabling physical conditions, economic loss, and even death. Nigeria does not currently have a policy against drinking and driving, even though it is assumed that the majority of traffic accidents are related to alcohol consumption (Abiona, Aloba, & Fatoye, 2006). Abiona, Aloba, and Fatoye noted that the study participants were more likely to be heavy users (47 percent) and were more likely to use beer (68 percent). Also noted was that the majority of the commercial drivers interviewed during the study reportedly used alcohol as a way to cope with frustration, increase energy, boost morale, to assist in socializing, and to keep alert. These workers expressed frustration related to the increasing prices of gas and parts to repair vehicles, debt, and harassment of policemen and law enforcement agents. To relax, initiate sleep, control temper, and to ward off illness were also listed as reasons for use. The majority of the participants in this study were aware of the relationship between drinking and driving; however, they were not aware of the physical consequences of alcohol addiction, such as cirrhosis of the liver.

Students Factors leading to student use include peer influence, parental deprivation, study difficulty, poor mental health, low levels of religious participation,


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gender (males), polygamous family background, lack of parental supervision (Fatoye, 2007), the desire to compete at work or play (Klein, 2001) and examination stress (Abiona et al., 2006). The four leading substances used by students include alcohol, stimulants (coffee and kola nuts), hypnosedatives (diazepam), and tobacco (Fatoye, 2007). These substances are relatively cheap and easily accessible, and more than half of students surveyed in this study were heavy users of cannabis and tobacco. (Odejide, Ohaeri, Adelekan, & Ikuesan, 1987). Alcohol consumption was found to be more common among students from middle- to upper-class families (Odejide et al., 1987; Pela, 1989). Also noted was that students who are raised in “Westernized” homes were more likely to use alcohol earlier and to continue to use.

PREVENTION EFFORTS Several organizations such as the NDLEA and the Nigerian Institute on Substance Abuse (NISA) have been created to assist in addressing the growing problems associated with drug use. However, because of the scarcity of available resources, it is difficult for these organizations to function (Klein, 2001). Several laws and policies, such as the Dangerous Drug Act, have been created, but there have still been problems associated with making sure they are enforced because the Nigerian government has not been very strict in enforcing policies, regulating the production of alcohol or its distribution and consumption (Bennet, Campillo, Chandrashekar, & Gureje, 1998). Other strategies have included the training of law enforcement officers and other officials and enlisting their help in reducing supply. Odejide (1989, p. 27) stated that “it is when law enforcement agents are well trained, well equipped, and well remunerated that they will be happy to perform their jobs and be motivated to implement the existing legislations necessary to reduce the supply of these harmful drugs.” According to Odejide (1989), for primary prevention efforts to be successful, there needs to be an implementation of strategies to reduce supply and demand. Because of the great demand for drugs, drug trafficking has grown exponentially since the early 1980s. Nigerian drug cartels pose a serious threat to any prevention efforts that are being put into place. The Blackstone Rangers, a Nigerian gang in Chicago, have set up a training school that teaches its members how to avoid detection, and the Vice Lords, a Nigerian drug cartel, practices shotgunning, which requires multiple carriers to travel on the same flight in an effort to ensure that some of its shipment reaches its destination (Vesely, 2000). Nigerian women have also become major players in the trafficking of illicit drugs where one group smuggled over $26 million worth of heroin from Bangkok, which is a major supplier, throughout Nigeria to Chicago. Because the trafficking of heroin is such a lucrative operation, it is attractive to individuals living in Nigeria where the average minimum wage is $60 a month (personal communication, Dr. Babalola, University Hospital, Ibadan). Not only is trafficking a major source of problems in relation to drug supply and demand, Nigeria is also a major producer of marijuana.

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These factors, coupled with the low enforcement of laws and policies against drug use, create a serious quagmire. The best defense against this problem is to significantly decrease the demand. In reducing the demand for substances, Odijede noted that youths need to engage in activities that help them develop positive personality traits. Along with positive personality traits, these individuals need to have stable home environments, opportunities for gainful employment, high morals and values, and positive social habits. Odejide (1989, p. 27) also stated that there needed to be an increased awareness of the environmental factors that may lead to drug abuse. By doing this, society can be educated as to what is considered a “suitable atmosphere” for the healthy growth of Nigerian youths. Pela (1989) noted four factors to take into consideration when working to curtail the problems of drugs, including (a) creating new recreational facilities so that students are attracted to and participate in the positive activities held there, (b) enforcing existing drug laws, (c) implementing drug abuse education in primary and secondary school curricula, and (d) encouraging youth to partake in social clubs and organizations. The Goodworkers Movement International has recently implemented its Prevention Is Better than Cure campaign. This organization currently operates a 10-bed facility in its church, where it uses spiritual counseling in an effort to help individuals overcome addictions. The idea for the prevention program came after realizing it is much more effective to deal with problems relating to drug use and abuse before it ever starts. The prevention program is missionary in style. Pastor Tunji Agboola and members of the church go out into the communities and along the streets of Ibadan and educate individuals about the perils of drug addiction. The next phase of the prevention program will include designing a curriculum that can be used within the school systems. One of the major problems faced by the Goodworkers Movement International is funding and resources (personal communication, Pastor Tunji Agboola, June 27, 2007). He stated that even thought he feels they have been very successful with their treatment program, they are oftentimes pressed for necessities to run the program effectively. They have been able to print materials that are being distributed throughout the community, but they have only been able to reach a small portion. With more funding and resources, he feels as if they could reach a larger number of individuals and thus further the education of Nigerians about the dangers associated with addiction.

TREATMENT ISSUES Wang et al. (2007) found that individuals in low-income countries, particularly Nigeria, are less likely to seek treatment when compared to highresource, high-income countries such as the United States, Spain, and New Zealand. Another problem for individuals who seek treatment in Nigeria is the fact that there are no aftercare services available (personal communication, Dr. O. A. Owoeye, Federal Neuropsychiatric Hospital, Lagos; June 28, 2007). At the psychiatric hospital in Lagos, an eight-week treatment program cost approximately N25,600 or US$200 ($1 is equivalent to approximately 128 naira). Many individuals are turned away because they cannot pay.


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Even among individuals who have government jobs, only a few have health insurance. Furthermore, addiction treatment is often not covered by standard health insurance policies. Untreated addiction and mental illness due to poverty and unavailability of treatment can have global implications as they are not individual or isolated disorders. An old African proverb states, “The ruin of a nation begins in the homes of its people.” When one person is affected, the entire family suffers. The family is part of a larger community, which is nestled within the state. This creates problems not only within the state but the country as a whole. The problems within the country eventually manifest themselves worldwide, as can be seen with increases in usage of specific types of drugs, drug trafficking, HIV/AIDS and other bloodborne pathogens, and the need for financial assistance and legal and social services. Within the Lagos hospital, numerous services are provided, including psychotherapy, psychopharmacology, case management, and family counseling. When an individual can afford and completes the required course of treatment, the likelihood of relapse is significant due to the absence of follow-up services. Follow-up care is paramount in treating individuals with addictions. However, because of the lack of funding and resources, these services do not exist.

Cultural Taboos and Traditional Healers Klein (2001) noted that drugs are predominantly identified as being “instruments of the devil” and “inherently evil” by individuals in Nigeria (p. 117). What made drugs evil was that they could cause an individual to become isolated, cutting contact with family members and friends, which is seen as a serious problem by individuals in Nigeria who strongly value family, tribal, and cultural ties. Other reasons for the inherent evil of drug use according to Klein included easing an individual’s guilt over committing crimes and breaking trust. Mental illness is also viewed as the result of evil spirits or as retribution for the sins of ancestors (personal communication, Dr. H. T. Ladapo, Federal Neuropsychiatric Hospital, Lagos; June 28, 2007). It is strongly believed by many in Nigeria that traditional methods should be the first line of defense when problems such as these arise. These traditional healers assist in alleviating ailments by connecting the individual to the spiritual world through specific ceremonies and concoctions. Because these substances are not regulated, their true medicinal properties are unknown. Individuals often emerge from the ceremonies with physical damage and fragile mental states. Family members, particularly those in rural areas, assist in engaging traditional methods of healing. They often participate in the ceremonies. Individuals who resist ceremonies are sometimes forced by the family to receive treatment from these sources.

THE INFLUENCE OF AMERICAN CULTURE American culture has a huge influence on individuals in other countries (personal communication, Dr. H. T. Ladapo, Federal Neuropsychiatric Hospital,

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Lagos; June 28, 2007). The United States is viewed as being a world leader in medicine and technology and many other areas both positive and negative. When we asked the individuals we interviewed during our research about their views of Western culture’s influence, particularly the United States, the answers received were quite surprising. Each individual interviewed felt as if the American culture, not just its drug culture, has a very profound impact on the trends that are being expressed in Nigeria. America’s family system was viewed as lacking in morals and values, which in turn contributed to the current drug problem in Nigeria. In America, hip-hop music has been associated with the degradation of women, perpetuation of violence, and glamorization of drugs. This culture has been so commercialized by the media that it has infiltrated all aspects of American society. Interestingly, in Nigeria, hip-hop culture and its more negative aspects are seemingly more apparent among younger generations belonging to families from higher socioeconomic statuses. Of all the individuals interviewed for this research project, it was reasoned that this was due to having access to programs such as MTV (Music Television), BET (Black Entertainment Television), and other forms of media. These individuals could afford to travel internationally as well as obtain resources necessary to emulate what had been portrayed by the media.

FUTURE DIRECTIONS AND CONCLUSIONS Several organizations such as the NDLEA and NISA have been created to assist in addressing the growing problems associated with drug use. Because of the scarcity of available resources, it is difficult for these organizations to function effectively in their fight against its problems (Klein, 2001). Drugs are attractive to individuals for a number of reasons. They help alleviate stress and feelings of depression and other psychological ailments; they allow an individual to feel invincible and work and perform longer hours. Drugs also provide economic relief for individuals who have suffered from poverty. Because of this magnetism, alleviating this problem will take hard work and dedication from everyone in every imaginable arena of society. As an ever growing and changing world, it is our collective duty to assist all individuals in need. As a society, we cannot ignore the plight of those suffering from substance use disorders here or abroad. No one and no place is immune to the effects of substance use and distribution and its numerous devastating effects. What happens in one corner of the world eventually affects other corners. It is important that we work collectively as a global community to understand the affects and appeal of drugs and its subsequent impact on mental health. By doing so, we can develop policies and practices that serve to best benefit us all.

NOTE This chapter is dedicated to the memory of Dr. Olabisi Odejide, professor of psychiatry at University of Ibadan, College Hospital, Nigeria. Funding for this project


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was provided by the Center for International Rehabilitation Research and Information Exchange (CIRRIE). Special thanks to Dr. Olabisi Odejide and the psychiatry residents, College Hospital, Ibadan, Nigeria; administrators and faculty, University of Ibadan; Pastor Tunji Agboola and staff, Goodworkers Movement International; Drs. Victor Lasebikan and Kejeem Adebayo, New World Psychiatric Hospital; staff at the Department of Mental Health-Obafemi Awolowo University; Drs. H. T. Ladapo and O. A. Owoeye and Mr. Nwaogu Marcellinus A., Federal NeuroPsychiatric HospitalYaba, Lagos.

REFERENCES Abiona, T. C., Aloba, O. O., & Fatoye, F. O. (2006). Pattern of alcohol consumption among commercial road transport workers in a semi-urban community in south western Nigeria. East African Medical Journal, 83, 494–499. Abiona, T. C., Fatoye, F. O., & Okwerekwu, R. O. (2006). Psychiatric manifestations from mid-adolescence to early adulthood: The experience in a Nigerian teaching hospital. Nigerian Journal of Psychiatry, 4, 38–49. Adelekan, M. L. (1996). The epidemiology and social context of amphetamine and psychostimulant use in Nigeria. Paper presented in Geneva, Switzerland at the WHO Program on Substance Abuse Meting on Amphetamines, MDMA, and Other Psychostimulants. Ake, C. (1996). Democracy and development in Africa. Washington, DC: Brookings Institute. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed.), text revision. Washington, DC: Author. Atkinson, D. R., & Hackett, G. (2004). Counseling diverse populations. New York: McGraw-Hill. Bennett, L. A., Campillo, C., Chandrashekar, C. R., & Gureje, O. (1998). Alcoholic beverage consumption in India, Mexico, and Nigeria: A cross-cultural comparison. Alcohol Health & Research World, 4, 243–252. British American Tobacco. (2008). Responsible tobacco production. Retrieved on February 20, 2008, from www.batnigeria.com/oneweb/sites/BAT_58TD2C .nsf/vwPagesWebLive/48256B92007865B480256BD4003F89BC?opendocu ment&DTC=&SID=. Doweiko, H. E. (2002). Concepts of chemical dependency (6th ed.). Pacific Grove, CA: Thompson Learning. Falola, T. (1999). The history of Nigeria. Westport, CT: Greenwood. Falola, T. (2001). Culture and customs of Nigeria. Westport, CT: Greenwood. Fatoye, F. O. (2007). Substance use among university undergraduates: A study of patterns and beliefs in Ile-Ife. Nigerian Postgraduate Medical Journal, 14, 37–41. Green, A. I., Drake, R. E., Brunette, M. F., & Noordsy, D. L. (2007). Schizophrenia and co-occurring substance use disorder. American Journal of Psychiatry, 164, 402–408. Gureje, O., Lasebikan, V. O., Kola, L., & Makanjuola, V. A. (2006). Lifetime and 12-month prevalence of mental disorders in the Nigerian survey of mental health and well-being. British Journal of Psychiatry, 188, 465–471. Ihezue, U. H. (1988). Alcohol and drug taking behavior among medical students at a Nigerian university campus: Part 2, sociodemographic factors of etiological significance. Journal of the National Medical Association, 80, 191–195. Klein, A. (1999). Nigeria and the drug war. Review of African Political Economy, 26, 51–73.

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Klein, A. (2001). “Have a piss, drink ogogoro, smoke igbo, but don’t take gbana.” Hard and soft drugs in Nigeria: A critical comparison of official policies and view on the street. Journal of Psychoactive Drugs, 33, 111–119. Lambo, T. A. (1960). Medical and social aspects of drug addiction in West Africa with special emphasis on psychiatric aspects. Bulletin on Narcotics, 17. Morakinyo, J., & Odejide, A. O. (2003). A community study of patterns of psychoactive substance use among street children in a local government area of Nigeria. Drug and Alcohol Dependence, 71, 109–116. Obot, I. S. (1990). Substance abuse, health and social welfare in Africa: An analysis of the Nigerian Experience. Social Science and Medicine, 31, 699–704. Odejide, A. O. (1989). A nation at risk: Alcohol and substance abuse among Nigerian youth. Inaugural lecture delivered at the University of Ibadan. Odejide, A. O., & Ohaeri, J. U. (1989). Drug-related admissions in 28 mental health institutions in Nigeria in 1989. Study commissioned by the Honorable Minister of Health, Professor Olikoye Ransome-Kiti. Odejide, A. O., Ohaeri, J. U., Adelekan, M. L., & Ikuesan, B. A. (1987). Drinking behavior and social change among youths in Nigeria: A study of two cities. Drug and Alcohol Dependence, 20, 227–233. Oyeshile, O. A. (2004). Communal values, cultural identity and the challenge of development in contemporary Africa. The Journal of Social, Political, and Economic Studies, 29(3), 291–303. Pela, O. A. (1989). Patterns of adolescent psychoactive substance use and abuse in Benin City, Nigeria. Adolescence, 24, 569–574. Robinson, T. L. (2005). The convergence of race, ethnicity, and gender. Upper Saddle River, NJ: Pearson Prentice Hall. Vesely, M. (2000). Africa: Highway to drug hell? African Business, 253, 8–10. Wang, P., Aguilar-Gaxiola, S., Alonso, J., Angermeyer, M. C., Borges, G., Bromet, E., et al. (2007). Use of mental health services for anxiety, mood, and substance disorders in 17 countries in the WHO world mental health surveys. Lancet, 370, 841–850. World Health Organization. (2008). Retrieved on February 20, 2008, from www .who.int/tobacco/media/en/Nigeria.pdf.

CHAPTER 18

Chasing Your Dreams Connie Susa

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ome years ago, conference planners for the National Association of Developmental Disabilities Councils scheduled a rock-climbing demonstration as a break in the meeting schedule. I watched in awe of the woman who used the widely spaced rocks on the vertical face of the hotel as handand footholds to climb straight up several stories to the roof. It was so beyond my capabilities that I could not imagine overcoming any greater challenge. Then my belief system exploded as each succeeding climber performed even more difficult tasks: • A man with a double prosthesis rappelled down the wall. • An able-bodied climber scaled the wall with a man who had cerebral palsy strapped to his back. • Finally, the audience was invited to round the corner where swooping architectural forms stood in bas relief against another wall of the hotel. I watched in complete astonishment as a man rappelled off the roof, over and around the jutting forms in his wheelchair. At that moment, I changed. I, who had long advocated for appropriate supports for individuals with disabilities, came to understand in a whole, new way that with sufficient supports, almost anything is possible to all of us. With proper planning and assistance, any person can achieve almost any dream.

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LEARNING FIRSTHAND As an example, my husband and I had been seeking full inclusion in a typical, sixth-grade classroom for our son, Mark. Since it would have been the first time that a student with multiple disabilities would be enrolled fulltime in a general education setting in our state, we were encountering strong resistance. Having Mark educated in the least restrictive environment with appropriate supports became a strong and insistent longing for us. One of the administrators in Mark’s segregated out-of-district placement told me that she could not recommend an integrated setting because she had never seen it work. She emphasized that her agency could not afford to lose credibility by recommending a situation which might not succeed. So while we had the right to pursue the kind of education that we wanted for Mark, we would have to do so on our own. We were facing a due process hearing where we would have to establish a preponderance of evidence to prevail, and I felt defeated and powerless in light of the agency’s refusal to help. Soon after this conversation, I found myself across the table from another representative of Mark’s school at an unrelated meeting. I asked him if we could talk for a few minutes after the meeting ended late in the afternoon. We sat for nearly an hour as I my poured out my vision of who Mark was and who he had the potential to become. As I shared these motherly aspirations, my eyes glistened in the waning light of the day. As I shared my deepest fears of what a future devoid of normal experiences and associations would do to our precious son, my eyes glistened again in a different way. Later, this man broke with his agency and testified before our hearing officer on our behalf. By doing so, he actually sacrificed his career in the segregated school but then moved into the public schools where he gained a statewide reputation as an innovative teacher who consistently engaged his secondary students with disabilities in work and other activities in the community. Now, Mark sometimes reads his college geography textbook into the wee hours, unwilling to stop learning, even though his abilities only warrant an audited class in his area of greatest interest. The sacrifice had become a win-win situation for both the teacher and our son.

ALL FIRED UP Here follows another example of hope: “Don’t follow your dreams; chase them,” Debbie Sprengel told her son, Kurt. He eventually confided that his dream was to become a firefighter, but when he started high school, he was afraid that he would never graduate or be able to earn a living. He would not even go to the movies with friends because he was afraid he might misread something in the lobby or on screen and be teased. Then his mom discovered print recognition software as an aid to her son’s dyslexia. With the technology, Kurt could highlight a section of text for the computer to read aloud to him. Hearing the words at the same time he scanned them helped him understand and remember. He began to master words and facts that he could not learn in the past. Kurt was so encouraged by his progress that he confessed to his dad, Jack, a volunteer fire fighter, that he wanted to serve the public in the same tradition.

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Kurt called a volunteer fire department to see if they would accept him as a junior fire fighter. They welcomed him, and Kurt worked hard to qualify on the engines and rescue trucks. He said, “By the time I take my EMT [emergency medical technician test], I’ll be ready. I feel confident with what I have achieved so far.” Eight years later, he now serves in the 169th military police, helping Iraqis learn to police themselves. He reports that for the first time he truly feels comfortable in his skin because he knows that he is “making a difference.” He now hopes to become a police officer when he returns home. Because he chased his dream, Kurt has a fire inside him.

ACCENTUATE THE POSITIVE The Secret by Rhonda Byrne (2006) maintains that as we focus positive energy on our dreams, they will come to pass. By the same token, when we respond with fear, shame, or other negative emotions, these feelings may erect barriers to these goals. Similarly, the motion picture The Bucket List suggests that given the motivation to overcome our stumbling blocks, we may systematically achieve our fondest desires. These examples indicate that the zeitgeist of pursuing aspirations with hope has arrived for the general public. It also holds equally true for people with disabilities and their families. This is not always easy to accomplish, as there are innumerable barriers to positive outcomes for people with disabilities. For example, parents are often told that they, themselves, are major impediments to their children’s successes. When my husband and I were pursuing a typical classroom placement with accommodations for our Mark, his individual education plan included a note that his parents were obviously in denial about the extent of his disabilities and needed a year’s worth of counseling to help accept reality. Rather than accept that negative assessment, my husband returned his own note on the rejected IEP that our school district was out of touch with current best practices and could benefit from a year’s worth of good in-service. The misuse of grief theory is a form of labeling that often haunts other families as well. During the 1970s and 1980s it first became popular to apply Kübler-Ross’ (1969) seminal work On Death and Dying to caregivers of relatives diagnosed with disability. Denial, anger, bargaining, and sadness—all born of “the loss of the dream child”—were seen by the untutored public as pathological responses to the initial diagnosis. However, Kübler-Ross’ original work saw them as natural responses that directed the grieving person toward eventual acceptance. It is only when the person who has experienced loss gets stuck in one or more of these stages of grieving that intervention is needed. Our fast-paced society, our school systems, our adult human service agencies are often too impatient to allow grieving relatives of those newly diagnosed to wend their way through the process to regain their equilibrium. They label many family members as having emotional difficulties when they are clearly on the wellworn path to acceptance. One of Elizabeth Barrett Browning’s (1992) lesser

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known sonnets, “Grief,” compares the stolid state of emotional paralysis to a marble statue. It ends with the apt description, “Touch it; the marble eyelids are not wet: If it could weep, it could arise and go” (p. 4). Even worse than the personal labeling of specific parents is the categorical labeling of parents as the cause of their children’s disability. Mothers were, at one time, identified as emotional “refrigerators” who supposedly created the social isolation of their sons and daughters with autism. While such volleys of shame are still fired against families far too often, progressive practitioners now use person-centered and family-centered procedures such as those advocated by Beth Mount. They actively seek out the strengths, talents, and gifts of family caregivers and their relatives with disabilities and build on them. Just as shame can stop a dream in its tracks, so can fear. As people with disabilities and their families, we fear many things: the unknown, failure, rejection, loss of safety, and loss of our personally valued roles as nurturers, controllers, or martyrs. How can we project a vision of a full life if there have been no role models to demonstrate it? How can we ask for more if we have never seen the best practices? A limited market of services most often leads to a limited life for a person with a disability. A limited vision of the future yields a frightening outcome of deprivation. In an examining room at St. Luke’s Roosevelt Hospital, where our second son, Frank, and I waited for the results of his six months of chemotherapy, hung a print of a room with a glass door that opened onto a vast expanse of water. If you looked closely, you could even perceive the curve of the Earth, where the horizon of the ocean met the sky. There was no land in the picture, nor even a porch or a step. Nor was there a boat. We commented as we waited for the doctors to enter with the results of Frank’s PET scan that to venture beyond that glass doorway was to step either “off the deep end” or into a limitless sea of possibilities. Luckily, when the news finally came, it was those vast possibilities. The chemotherapy had been effective; his lymphoma was gone, and he could resume his normal life. He has returned to his rewarding work and his circle of friends, filled with hope for the future and a zest for every precious moment. Fear can be an impediment to normalcy. A friend has a daughter with multiple disabilities, like our son. She often commented that she saw our respective children as being very similar. We had both been told that our children would never have language or be able to function outside the segregated day placement, where it would take up to 20 minutes to move and arrange all the wheelchairs in the library for therapeutic story time. As my husband and I attended conferences, read the professional journals, and visited model programs that all endorsed inclusive education as the logical way to prepare students for adult life in the community, we shared the principles with our friend. We served on our city’s Special Education Advisory Committee together, where we debated the pros and cons of age-appropriate content, curriculum modification, team teaching, project-based learning, and other practices that contribute to the successful inclusion of students with disabilities in typical classrooms. We urged her to bring Annie (name changed for confidentiality) back into our home district and into typical classes, but she did not want to invite the ire of the school administrators. She was also

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afraid that Annie would be ignored in favor of typically functioning students in a regular education classroom. Now that our children are adults, their lives look very different. Mark is a product of his experiences in a rich language environment with good social role models. He speaks with confidence, having given oral reports before his peers. He follows the news and votes with pride in his citizenship. He works with support at his own entrepreneurial business based on his interests and strengths, and he serves on statewide committees. He holds an office at church and is honored to serve a part-time mission as well. He has competed in road races with a custom-built racing wheelchair and works out either at a local gym or on the stationary bike in his own apartment. None of this is true for Annie or other “developmental twins,” that is, age mates with the same kind and level of disability as Mark’s, who clung to the traditional, segregated path.

DREAM BIG DREAMS Goethe wrote, “Dream no small dreams for they have no power to move the hearts of men.” Etmanski (2004) agreed in A Good Life. His innovative work in creating personal support networks in Canada has won an Ashoka Award for Social Entrepreneurship. He maintains that the secret to crafting life-shaping goals is to ask not what specialized services we may rely on but what constitutes “a good life.” In other words, we should not focus on merely accommodating the needs of the individual but should envision those indicators of a meaningful and rewarding experience, whether or not they now exist. We ought not worry during this visioning stage about the individual’s readiness; after all, who among us would ever learn to swim if we could not enter the water until we had mastered the skill? Nor should we concern ourselves at the beginning with other barriers as we dream our big dreams for the future. Rather, we should establish the finish line and then work our way toward it. O’Brien (1989) set the values that guided our son into the abundant life he now enjoys. As I have encouraged literally thousands of individuals with disabilities and their families over the years, this is how I have described the O’Brien’s quality indicators: • Sharing places—Maintaining or increasing our presence in the community until we attain genuine membership there; using natural supports, as opposed to traditional human services, wherever possible. • Making choices—Controlling the directions our lives take by expressing our interests and preferences; learning what we need to so that our decisions will be based on sound information. • Increasing respect—Building a positive reputation through valued communication, roles, and associations; standing up for ourselves when the need arises; taking opportunities to contribute in a giving role. • Improving skills—Lifelong learning of things that make a difference; building on interests and other areas of strength; accessing adaptive equipment

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and modern technology to solve problems; using skills where they make the most sense. • Building relationships—Increasing the number and quality of our social interactions with others of all abilities and ages; drawing on natural supports in the community, those who demonstrate that they care by committing their time and effort with us and reciprocating with them insofar as possible. Note that these are not merely segregated activities in community settings. Throughout the country thousands of individuals with disabilities are, as Putnam (2000) stated, bowling alone. Driven in an agency van, accompanied by paid staff, and whisked back into a group home to which someone else holds the key, these people are experiencing a shadow of what might be. It is as if they are in Plato’s (1974) cave, unaware that beyond their view, the real experience of recreating with friends of their own choosing and returning to their own supported homes are an abundant reality which could be theirs. No, O’Brien’s quality indicators are about self-determined lives where friends value the real contributions and choices that people with disabilities make.

MYLES TO GO One example from real life can illustrate how each of these values builds on the others. Myles (name changed for confidentiality) insisted from the beginning that he wanted “a good job,” one “in the community.” He wanted to receive competitive pay and rewards for the overtime and helpful suggestions that he offered at the Arc Center. He wanted less down time than he had in the sheltered workshop that he began attending in the 1970s. There, he had been promised that he could work out in the weight room if there was not enough bench work but was instead given magazines that he could not read or was left to the unwanted advances of a fellow worker. He resented the five percent that the center held out of his skimpy pay to support recreational programs that he rarely participated in. At one point, he was so frustrated that he stopped attending his day program and secured a job “under the table” doing custodial work. There, he grossed more than 11 times his earnings at the sheltered workshop, but he quit when his income nearly disqualified him from other, needed government benefits. Rather than return to the workshop, he spent nearly 15 years at home, doing very little. He remembers almost nothing about the long days that all seemed the same to him. However, his increasing anger being acted out against people and their possessions prompted his parents to move him into a shed without running water at the back of their property. Both Myles and his parents recognized that he needed more structure, since the boredom was frustrating him. Reluctantly, he returned to his old day placement. Still, he had specific ideas about other jobs he might try, based on his former experiences. He knew he could box items, stamp things, and run a foot press, and he frequently expressed his desire to leave the workshop.

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At one point, his workshop supervisors told him that if he left the Arc Center to work in the community, “everything will stop.” They explained that he would lose both his Supplemental Security Income and his Medicaid coverage if he left. Myles entered the Family Futures Planning Project (a three-year, federally funded project of the Rhode Island Developmental Disabilities Council), and his life began to change. He began attending self-advocacy meetings, where he met other people with developmental disabilities who worked in the community. Myles’ planning facilitator arranged a substantial discount for him to enroll at the YMCA, where he began working out three times a week. The exercise gave him pain to begin with, so his friend found a university-based physical therapy clinic where Myles could get free help from graduate students who had professional supervision. He soon became independent by using the exercise equipment and found that he enjoyed shooting baskets after his workouts. Myles had spent enough time at the YMCA that one night the manager there offered him a job at minimum wage. His friends who had advocated for his paid position knew of the plan in advance and gathered in a darkened office off the gym to give him a surprise party. As Myles adjusted to his new role, his support staff gradually withdrew. Myles found taxis too expensive to take to work and tried the public buses instead. However, he remained very uncomfortable around strangers and was especially sensitive to the smells of a bus. A co-worker offered him a ride to and from work. Myles began purchasing furniture, one piece at a time, for an apartment where he eventually went to live with a roommate. He had successfully improved in everyone of the five quality indicators.

FIGHTING FOR KATE’S RIGHTS In 1969, when Kate was four months old, her dad was appointed to a high-level role in the government.1 They were anticipating a big family celebration on their second Christmas Eve in Washington. That was also the day that a physician of Washington Children’s Hospital reported to them on the interdisciplinary workup their team had conducted on Kate. She advised the family to institutionalize Kate because “she will never give you any love.” On the drive home, Kate’s mother, Addie, asserted that she simply did not believe all the negative medical opinions about her daughter’s future. She slammed her hand against the dashboard as she resolved aloud to create a normal life for Kate. As the family celebrated the holiday that night, Addie’s mind was whirling, beginning to formulate the how-tos that have guided their actions for the past 36 years. Loving Kate was the easy part, but when her dad’s term in Washington was complete, the family moved back to Wenham, Massachusetts. Kate was wait-listed for therapy services by the Massachusetts Department of Mental Retardation (DMR) for nine crucial months. On the recommendation of DMR, the parents made the long drive to the Hogan Regional Center. The caretaker used the ring with scores of keys on his belt to show them around.

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Addie took in the rows and rows of white metal cribs and the overwhelming stench of the place and determined again that Kate would grow up in her home with her family, the same as any other cherished child. Another crushing assessment was made at the Developmental Evaluation Clinic at Boston Children’s Hospital. Even with Kate’s extensive needs identified, it took almost 10 months for the school department to come up with an educational placement. It was a Special Education Consortium, where Kate was transported by taxi to seven different schools with seven different communication systems in as many years. Put-downs came in many forms during those years. For example, Addie discovered that while Kate was strapped into a prone stander, the staff had slipped Pringles canisters over her arms to straighten them. This reflected a total disregard for the unusual bone structure in Kate’s elbows and just left her frustrated. Kate’s profound dual hearing loss was not diagnosed until 1983 when the Auditory Evoked Response Test became available. She was 14 years old. Each physical, social, and emotional insult that focused only on Kate’s deficits raised Addie’s ire again, and each time she used the pent-up energy to find a new solution. Dr. Allen Crocker contributed positively when Addie asked him where she could go for more answers. He suggested they look into TASH, The Association for Persons with Severe Handicaps. Addie and Brock registered for the TASH national conference in Chicago. There, they found themselves surrounded for the first time by professionals who all shared the same research-based vision of quality lives for individuals with complex physical and cognitive needs. In fact, as far as the couple could tell, they were the only parents among positive-minded professionals. The executive director at the time invited Addie and Brock to begin a parents’ committee. Through that association, they gained useful information and hope. They hired local students from Gordon College as mothers’ helpers, so that Addie could be free to make phone calls, study the research, visit families with innovative solutions, and write. Eventually, they co-founded a chapter of TASH. Addie later served two terms on the national board, chairing its Family Committee and presenting at conferences across the country. In return, the family received support from the organization in their two due process hearings to secure an inclusive educational setting for Kate in high school. The family’s medical insurance paid for a physical therapist, who taught Kate to use the stairs safely and got her exercising in a communitybased health club. They sought another specialist to teach Kate to swim the length of the pool independently. In a learning team in her high school home economics class, Kate wiped the counters independently and threw away the paper towel with pride. She did vocational exploration in white-collar settings. Success bred success, and for the first time, Kate was embraced among lively friends, who invited her on outings and dropped in to visit. At graduation, Kate received a certificate on stage, while all her classmates cheered. Following graduation, Kate accepted a job offer from a cable television station. She functioned with the support of a job coach as an office assistant. She attended office parties and appeared in the office yearbook, and the company received the Best Employer Award from the Massachusetts Rehabilitation Commission.

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Before Brock died of lung cancer in 1998, the family certified Kate for a federal Home of Your Own Program. Kate and her mom moved to Providence in 2000 to be near Kate’s sister, Lee, and her family. Kate’s great-great aunt Folly left a trust that allowed them to secure a small brick house, which is staffed around the clock and feeling, according to Addie, “very much like home.”

MARK ACTS FOR HIMSELF With his low muscle tone, my son Mark was still not creeping at two years old. His therapist taught us to sling his torso in a big bath towel to lift him into the all-fours position. This would help him experience the appropriate position for crawling and strengthen his arms and legs. Through many repetitions of the bath towel therapy, Mark eventually began to raise himself up on all fours. He was tenuous and every time he would fall forward, he would lead with his face, hit his face on the floor, pop the tight skin on the bottom of his chin, and need stitches in the emergency room. Still we all persevered. We sought the advice of his occupational therapist for a toy that would motivate him to move forward. She suggested a particular battery-operated dog that would scoot across the floor when you hit its hat. Mark could not hit the mechanism hard enough to activate it himself. When I would tap the hat, the toy would zoom across the floor too quickly for Mark to track. We needed something that would go on its own and do so slowly enough that it would always stay just out of his reach. On my way to my friend Sallee’s home in the country, I stopped on a dirt road to avoid hitting a turtle was in my path. Sallee examined the animal I had brought to her and pronounced him to be an Eastern box turtle, a creature that closed up his bottom carapace when he withdrew his head. “There is no way for any random motion to hurt it,” she assured me. “Perfect,” I thought, and quickly learned about the care and feeding of our new pet, Foster. Not only did he meet all our original criteria, he also modeled the reciprocal movement that Mark needed to reproduce in his own arms and legs. By the time Foster was liberated from his outdoor sun bath by a neighborhood child, Mark had learned to creep like any respectable turtle. From that time forward, Mark wanted to go. He would creep to the plastic “map” of a small town on which he drove his matchbox cars. He loved the room in the Children’s Museum where the state’s highways were grooves on a map that covered the entire floor of one room. We enrolled him in Cub Scouts, where he received advancements and awards with his nondisabled peers. When the second Blue and Gold Banquet was scheduled in the same banquet hall as it had been the year before, Mark bragged that he knew the way to the site in next town. Even though Mark had only been there once, a whole year before, he properly advised every turn and every lane change along the way. We were amazed because we had been told that Mark had significant cognitive limitations. He proved his strengths in visual memory, directionality, and mental mapping repeatedly through the years, and when he finally went into a sixth-grade classroom with typical students, he was thrilled to discover that geography would be part of his regular curriculum.

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When Mark needed content for his high school summer program, John suggested that our son learn to use the public buses. Then he taught the school personnel to use them so that they, in turn, could prepare Mark for independent travel. Mark spent two years in our city’s new Travel and Tourism vocational program. By the time he turned 20, we arranged for his last semester in high school to include a half-day internship with the Rhode Island Public Transit Authority. His supervisor there expected and received daily memos as Mark spent time in each department, learning everything from bus maintenance standards to the names and roles of dispatchers. He crafted a plan for Mark to prove his abilities by taking a day-long intermodal trip on the public transit system, looping throughout the state. At first, I balked at the idea of my vulnerable son being out in public, entirely on his own. In spite of what our special education director called “splinter skills,” Mark had not outgrown the developmental disability identified before he started in early intervention. His teacher suggested a cell phone as a lifeline. My husband reminded me that it is more often when people are shut away in places that occlude the view of the public that most abuse takes place. Mark’s mentor at the bus company reminded me that he needed to complete this culminating activity to graduate from high school. On the appointed day, having practiced pieces of the trip with supports throughout the spring, Mark set out in his wheelchair for the fixed-route bus stop nearest our home. He phoned twice: once to a dispatcher when he missed a bus and needed to know the time of the next one and a second time to us when his baseball cap fell into a trash can and got melted ice cream on it. He transferred buses at two hubs in our statewide system, took a commuter train back up to the center of our capital city, and relaxed on a paratransit van for the final leg of his trip. All of us who were planning Mark’s transition to adult life rode the crest of that wave all the way to a peer travel training business. Our statewide Developmental Disabilities and Vocational Rehabilitation systems collaborated to help Mark establish Accessing Community Transportation (ACT) and certify him as a state vendor to train job seekers who were unlikely to have their own transportation. After the business incorporated, a dedicated microboard helped Mark make business decisions. He has since branched out into contracting with school districts that want to provide travel training for their transitioning high school students. Board members are also members of Mark’s broader personal support network, which is facilitated by one of his former racing partners. In addition to using grab bars, hearing aids, a fiscal manager, and a wheelchair, Mark also enjoys his own apartment, a diverse group of friends, popular entertainment in community venues, valued roles, and, best on his own list of priorities, several trips out of state each year. He is still seeking Ms. Right, and needs that goal in his life as much as the ones he has already achieved. As one reviews the stories of these individuals and their family members, we can see that the process of pursuing dreams of normalization is similar in each instance. Each of these people has recognized that achieving the desired vision will be a long process. Their determination is stronger than the voices of all the naysayers. They keep their eyes on the prize even as they live

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with the discomfort of uncertainty. That ability to let go of control and of those aspects of caregiving that are either unnecessary or that may be shared with others contributes to their success. The positive values of community membership, personal autonomy, contributing to society, using adaptations to compensate for weaknesses, and always fostering reciprocal relationships— all can outweigh the fears that would keep us from worthwhile goals for a good life. They are the five points of a star that is, at the beginning of the journey, far beyond our reach. As we climb over the stumbling blocks we rise gradually higher until we can pluck that star from the darkness and bring its light into our own lives. The climb may be steep and difficult, but if we can overcome our fears of the dizzying heights to look down at where we have come from, the view will be exhilarating, and the prize of more normalized experiences and associations at the summit will be priceless.

NOTE 1. Kate’s story is a personal communication to Connie Susa by Adelaide Eich Comegys; used with explicit permission to use personally identifying information.

REFERENCES Browning, E. B. (1992). Sonnets from the Portuguese and other poems. New York: Dover Thrift. Byrne, R. (2006). The secret. New York: Atria Books. Etmanski, A. (2004). A good life for you and your relative with a disability. Vancouver: Orwell Cove. Kübler-Ross, E. (1969). On death and dying. New York: Macmillan. O’Brien, J. (1989). What’s worth working for? Leadership for better quality human services. Paper delivered at Responsive Systems Associates, Lithonia, Georgia. Plato. (1974). “The cave,” in Republic. Translation by G. M. A. Grube. Indianapolis: Hackett. Putnam, R. D. (2000). Bowling alone: The collapse and revival of an American community. New York: Simon & Schuster.



W

hy did we need a book entitled Disability: Insights from across Fields and around the World? In all other sectors of life, globalization is a force that is bringing significant advantages (and challenges). Global collaboration can provide an opportunity to appreciate both cultural differences and similarities; it can encourage sensitivity to diversity and strength through cohesion. Through global cooperation, we may be able to address the extent to which people with chronic illness and disability and their issues are taken seriously. In his review of globalization, Kunitz (2000) concluded that globalization in the health arena has the “potential, incompletely realized, to create both an audience for the airing of injustices . . . and a means of redress” (p. 1538). However, to collaborate globally, we must first understand and overcome very real differences without losing our cultural distinctiveness. We must learn about each other and appreciate difference as a fundamental starting point in life (see chapter by Gibson). But we must also recognize and respect the impact of historical legacies such as colonialism (see chapters by Campbell, Barlow, & Barlow; Kelly), cultural or religious nuances (see chapters by Al Attiyah & Mian; Gharaibeh; Gotto; Sovani; Manyibe, Mamboleo, Mugoya, & Kampfe; Tawakkul, Bhatty, & Yousef), different degrees of social development (see chapter by Söderström), and geographical challenges (see chapter by Morrissey). We must also acknowledge that inequality is an inherent scar on the world’s health and social landscape (Jong-wook, 2003) that profoundly alters the experience of disability. For all these reasons, we needed to explore insights about disability from around the world. Is it possible for people with disability to reclaim the globalization movement and redirect its energy toward outcomes, such as access for all and

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the elimination of disparities in health and human services? As Emmerson, McConkey, Noonan Walsh, and Felce (2008) noted, the importance of a global approach to understanding and addressing disability is emerging. Globalization is fundamental to the establishment of the United Nations’ Millennium Development Goals (www.un.org/millenniumgoals) and to the work of the World Health Organization around the International Classification of Functioning, Disability and Health (2001). However, the most exciting global initiative in the area of disability is the United Nations Convention on the Rights of Persons with Disabilities, which was launched in December 2006. As we noted in the introduction, the convention has raised important human rights of citizenship for people with disabilities and has proposed a definition of disability that is remarkable. It is a definition that is not based on cause or a threshold of functioning (Leonardi, Bickenbach, Ustun, Kostanjsek, & Chatterji, 1996). Instead, disability is recognized to be an evolving concept that is always contextualized and relational as we have represented in this series. The chapters contained in this series are testament to the importance of rights-based legislation and the aspirations it can engender in society. In countries without suitable legislation that acknowledges disability, people with disabilities are invisible, their rights are not upheld, and their needs are not met (see chapters by Al Attiyah & Mian; Campbell; Bhatty, Moten, Tawakkul, & Amer; Gotto; Sovani; Spirito-Dalgin, Ergene, Marrone, & Munir). However, the fallibility of legislation is also a common theme across the chapters. Even in countries where legislation has been passed to provide access to buildings, education, or employment, it can remain unenforced or incomplete in its implementation (see chapters by Agorastou, Kalyva, Kaderoglou, & Stefandis; Kuemmel & Kuemmel). Some chapters highlight the unintended consequences of legislation, often created by the fact that legal rights are applied and interpreted inconsistently or are only ascribed to those who fit the “legal” definition of disability or conform to the expectations of that legislation (see chapters by Campbell; Hedlund; Pilgrim & Rogers). Too often in the industrialized world, we think there is nothing to learn from other places. We perceive those places as being in need of improvement through the adoption of the values that dominate industrialized countries. Through this contemporary form of colonization, we continue to export Western ideology without seeing its negative impact on other countries (see chapter by Lusk & Paul), instead assuming that Western ways are aspired to by all other cultures. This pervasive attitude perpetuates a belief among scholars from “developing” nations that solutions emanating from the United States (or other industrialized countries) are more legitimate than their own localized knowledge. In this series, we highlight some of the lessons that can be learned through global collaboration. Kendall and Marshall describe the creation of a global community of influence through which the voices of Indigenous women with disability can be magnified. Throughout this series, we have tried to highlight lessons that transcend countries, explore how globalization affects each of us, and identify where we are each located in this global community. As an extension of this argument, it is equally clear from these volumes that lessons can be learned from minority populations that are marginalized

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within our nations. Barnett and Barnett; DiCowden; Hickey; and Leisman clearly describe the lessons that health professionals can learn from Indigenous models of health, recognition of spirituality, and multifaith approaches to rehabilitation. Begay, Brown, and Bounds demonstrate the way in which we each see the world through our own cultural lens, cautioning us to be open to the lessons from other cultures. We need to constantly ask ourselves, “what can we learn from other contexts, other countries, other cultures, and even from history?” (see chapter by Tawakkul, Bhatty, & Yousuf for a description of the two-way nature of cross-cultural learning). Have we dealt with disability in better ways in the past? Have we learned from failures of the past, such as that described in the “journey of sanctioned injustice” (see chapter by Kelly)? So what are some of the common lessons and trends that emerge through these chapters? In dividing the chapters into three volumes, we note the arbitrary nature of the divisions—disability is an entire experience that cannot be easily divided into experiences, contexts, and responses as we have done here. In reality, these three facets interact to create a whole that is far more complex than we can readily represent in words. Our division of chapters could have been based on any number of other themes that emerged as we read them. A major observation was that several chapters describe the global shift from biomedical constructions of disability to those based in the social world. This complex shift is discussed in many other texts on disability, and only some of the complexities are described in this series. Importantly, several chapters comment on the fact that somewhere between these two extremes is a point where the biological, psychological, social, and cultural experiences come together and contribute to a holistic understanding of disability. Some chapters focus specifically on definitions of disability that are derived from these frameworks (see Crocker; Gibson; Hedlund; Pilgrim & Rogers). These chapters describe how different definitions and conceptualizations of disability translate into practices and policies that impact on people. Other chapters use social analysis or critical disability discourse analysis to explore the impact of social constructions and language on the way people with disability are experienced and experience themselves. These chapters (see Campbell; Hodgkins & Baility; Pilgrim & Rogers) are important because they challenge the way in which we think about disability and encourage us to extend our minds, rather than unquestioningly conforming to the prevailing pressures. The shift to a rights-based approach to disability (see chapters by Crocker; Kuemmel & Kuemmel; Morrissey) is another important theme. Although the social model has been a useful tool for shifting responsibility for disability from individuals to societies, some chapters comment on how this model has also denied the very real existence of physical impairment and the impact of that impairment on individuals (see Campbell; Susa; Gover). An important corollary of the rights-based approach is the fact that it moves us one step closer to an approach where difference is expected, accommodated, and celebrated. Approaches based on equality tend to assume that we need to create balance across people by ignoring or rectifying difference (i.e., through welfare systems). By definition, some individuals are seen as unequal, inadequate, and

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unacceptably different. In contrast, responses based on the principle of universality promote a model where difference is expected, celebrated, and accommodated. It is obvious from the chapters in this series that the experience, definition, acceptance, and/or rejection of a “disability identity” varies enormously across individuals and depends a great deal on the extent to which it is personally relevant or meaningful, often because it prevents participation in a desired activity (see Susa) or if it is religiously significant (see chapters by Al Attiyah & Mian; Bhatty, Moten, Tawakkul, & Amer; Gharaibeh; Tawakkul, Bhatty, & Yousef). There are also chapters that highlight how culture, or individual choice (see Stager; Yazzie-King) can create or remove disability simply through the way it is viewed. In some cases, this social interpretation of disability alters the experience of the same impairment within a given culture (see chapter by Gotto); in other cases, it simply denies the presence of real difficulties (see chapters by Ackerman & Banks; Catalano & Kendall; Salley), and in yet other cases, it creates stigma and a sense of illegitimacy (see chapters by Campbell; Cederna, Palguta, Wall, & Koch). The experience of being excluded from society is particularly relevant for people whose disability does not fit the normative views, stereotypes and definitions—for instance, people whose disability differs from what would be expected. For example, Catalano and Kendall describe the isolating experiences of young people who have had a stroke—usually considered to be an elderly person’s disability. Kampfe describes the high incidence of preventable hearing disability in elderly people that is often overlooked because it is attributed to simple age-related decline. Conceptions of disability in society are heavily influenced by discourses in the popular media, the general use of language, and social norms (see chapters by Hodgkins & Baility; Morrissey; Campbell; Sovani). It was not possible to find a consistent language for this series because the words used to describe people with disability represented an entire body of hidden meaning. Chapter authors used various forms of language to refer to people with disability. “People first” language was preferred by many because it addresses people before it acknowledges disability. Other authors preferred to use the language of “Disabled People” to acknowledge the implicit nature of disability and the fact that it is inextricably interwoven into a person’s character, in the same way as their gender, ethnicity and personality. Finally, some authors used the abbreviation PWD that is common among advocates. This language positions individuals within a collective identity that is not about deficit, but about having the power to self-advocate for change. In some sectors of the United States, it is customary to capitalize terms that refer to people with disability (i.e., People with Disability). In contrast, to capitalize words in Norwegian (i.e., Deaf) brings with it connotations of stigma (as if they were a special group). The Norwegian deaf community never spells with a capital D first, just an ordinary d to show they are ordinary people (see chapter by Hedlund). Several chapters demonstrated how people with disability are influenced by languages, discourses, and constructions. Stigma and its impact are common themes across many chapters, often created by local cultural ways of explaining

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disability as a consequence of one’s own actions, a repercussion for one’s sins or just bad luck (see Al Attiyah & Mian; Manyibe, Mamboleo, Mugoya, & Kampfe; Sovani). However, stigma is also present in countries with advanced legal and social service frameworks around disability, as demonstrated by Campbell. In negotiating such frameworks, people with disability are required to legally “prove” their disability to receive rights. Further, they must often demonstrate that they have made attempts to mitigate their “loss.” They are only deemed worthy of society’s assistance if they follow these rules (see also Gibson). McDonald’s chapter describes how young people with invisible disability respond to these unreasonable demands by obscuring their disability and “passing” themselves off as nondisabled. Other chapters described the denial of parents when they first confront disability in their child (see Bursnall, Kennedy, Senior, & Violet; Douglas & Borbasi). The Sovani chapter about people with schizophrenia in India demonstrates a language-based attempt to alter stigma. Other chapters describe ways in which service systems are responding to stigma by developing models based on wellness (see Breen & Saggers); the integration of mind, spirit, and body on a continuum of ability (see DiCowden); and person-centered planning (see Blessing, Golden, & Bruyère). Unfortunately, however, the responses of health professionals are not always helpful—throughout these chapters, there are examples of hostile systems (see Burnett; Bursnall, Kennedy, Senior, & Violet; Douglas & Borbassi; Madrid, Grant, & Rosen), inactive or unresponsive systems (see Leisman; Gibson), ill-informed systems (see Agorastou, Kalyva, Kaderoglou, & Stefanidis; Kuemmel & Kuemmel; Spirito-Dalgin, Ergene, Marrone, & Munir; Tawakkul, Bhatty, & Yousef), and actively harmful systems (see Kendall & Muenchberger). Confronting an unhelpful system is an exhausting reality in the lives of people with disabilities. Gibson, for instance, describes her relief on the one occasion when she did not need to fight the system for her rights. We have included chapters that demonstrate the helplessness and passivity that individuals sometimes experience when they confront unhelpful systems and the internalized sense of inadequacy that can result. Other chapters describe responses that seek to change systems through self-advocacy (see Koch, Beggs, & Bailey; Susa; Zuver, Dorton, Finks, & Fisher), legal mobilization, and capacity-building (see Campbell). There are stories written by people with disabilities who have become health professionals and proceeded to influence models of practice (see Barlow; Gibson; Pieper). There are also stories of health professionals who have experienced disability leading to a change in their practice (see Kendall; Susa; Morrisey). The stories about preventable disability are particularly disturbing— violence (see chapter by Ackerman & Banks), war (see Gharaibeh; Manyibe, Mamboleo, Mugoya, & Kampfe), preventable disease (see Morrissey; Sovani; Gharaibeh), accidents caused by unregulated worksites or driving conditions (see Morrissey), deliberate self-harm (see Campbell), and the neglect of an entire cultural group (see Barlow; Gotto). These chapters highlight the excessive level of unnecessary and preventable disease and injury that results in disability. With appropriate health interventions or sufficient protection of innocent citizens, this level of disability could be avoided. Natural disasters

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feature prominently (see chapters by Campbell; Spirito-Dalgin, Ergene, Marrone, & Munir). Our lack of preparation for such disasters and prevention of subsequent disability is senseless, particularly in areas where disasters are known to occur. However, as Madrid, Grant, and Rosen show in their chapter on the aftermath of Hurricane Katrina in the United States, poorly planned responses to natural disasters that create disability and neglect people with disability during disaster occur in the most unexpected places. Article 11 of the UN Convention on the Rights of People with Disability extends the right to life and survival to situations of emergencies. Under the convention, countries are required to ensure the protection and safety of persons with disability in situations of risk, including armed conflict, humanitarian emergencies, and natural disasters. Article 16 extends the right to freedom from torture or cruel, inhuman, or degrading treatment and from all forms of exploitation, violence, and abuse. Clearly we have a long way to go in some parts of the world, including the United States, if we are to see these rights upheld in future. Several chapters have identified the important role of health promotion, rehabilitation, and prevention for the future—in the workplace (see chapters by Blessing, Golden, & Bruyère; Buys & Randall), in schools (see Liesman), on the roads (see Morrissey), and within service systems (see DiCowden; Breen & Saggers; Parkinson). There is a fine line between respecting individuals who already have disability and promoting cure, prevention, and amelioration, which automatically places a particular type of discourse on disability (i.e., as a “harmful” state that should be removed if possible). This dilemma is faced by many people with disability when they are presented with opportunities to “remove” or reduce their disability (see chapters by Campbell; Gibson). It seems that we must seek a society that accepts diversity as a natural part of human existence and responds to that diversity in a way that acknowledges its presence and its right to be expressed at the same time as valuing human health and life, creating environments in which people can flourish and achieve their dreams (see chapter by Susa). How do we walk this fine line? Is the rights-based approach with its universal doctrine able to provide a way forward? Or does a rights-based approach focus attention on the individual—ensuring rights but also implicitly assigning individual responsibility? Might a “collective welfare” approach (see chapter by Hedlund, Landstad, & Svensson) provide an equally promising way forward? The most common area where universal access rights have been sought is in relation to physical access. Several chapters show that even this simple universal right cannot be easily implemented or enforced (see Gharaibeh). The chapter by the Kuemmel and Kuemmel is a good illustration. These two sisters, one with a disability and one without, describe their travel experiences in parts of Europe and show how access is meaningless unless it is universally applied. They describe how autonomy was jeopardized by their inaccessible environment and noted the impact this had on both sisters. The demands placed on family members when environments are not supportive of autonomy are highlighted in several chapters. For instance, Catalano and Domalewski describe how the daughter of an elderly person loses her important role of daughter and instead becomes a case manager. Pakenham

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describes the impact on youth who care for a parent with a disability. From the perspective of the youth, this parental reliance reduces their independence and can place unrealistic expectations on them. Ackerman and Banks note that family members who become caregivers do so without adequate training and support. The role of technology in improving participation in society is highlighted by Söderström in her chapter about the “digital town square.” She describes how the internet has provided a new way of interacting for young people with disability. However, she notes that, like any other context or environment, this digital town square can exclude particular people. The Wheaton and Bertini chapter goes on to describe efforts to make technology accessible around the world. In explaining the lack of access in some countries, Kuemmel and Kuemmel observe that the collective ideals in some countries may mean that people with disability are expected to rely on family, and that family is expected to care for a member with a disability. This interesting interaction between independence and interdependence is one that emerges through several chapters, the most clearly of which is Gotto’s chapter about two young Mixe men with disability. In this chapter, Gotto describes how disability is a relational and social phenomenon. The impact of the context on disability and the important impact of disability on its context is outlined by the chapters on bullying in schools (see Liesman), foster care (see Cederna, Palguta, Wall, & Koch), and families (see Douglas & Borbasi). In contrast, Susa describes the dreams that can be achieved by people with disability when the context is right. This is also demonstrated by Gibson, Gover, and others. Several chapters highlight ways in which we are beginning to respect the personal needs and rights of individuals who have disability. Blessing, Golden, and Bruyère describe the development of person-centered planning and Bell, Henthorne, Hill, Turnball, and Zito describe the process of supporting autonomy. Several chapters outline movements in their countries to make schooling more accessible and appropriate for students with disability (see Agorastou, Kalyva, Kaderoglou, & Stefandis; Spirito-Dalgin, Ergene, Marrone, & Munir) or to build capacity among its citizens with disability (see Campbell; Sovani). What is the role of these movements in countries or populations where the intersection between poverty, race, and disability delivers a triple disadvantage? Whether in developing countries or in a minority group within the richest countries in the world, people with disability who live in poverty are confronted by an intricate web of effects—they are more likely to be exposed to risks (see chapter by McDonald, Keys, & Balcazar), they are less likely to receive treatment (see Burke & Lopez), and they are less likely to have access to healthy alternatives (see DiCowden). The chapters in this series highlight the vast differences between regions of affluence and those affected by poverty. This issue is articulated more fully by Paul Leung in his preface to the series. In conclusion, understanding disability issues that impact on people from a global perspective can contribute to the redress of health disparities and reduce marginalization caused by inappropriate services or insensitive practices.

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However, as described by Kunitz (2000), “there is no assurance that all countries will benefit equally from the global economy that has emerged since World War II” (p. 1531). Indeed, Kunitz wrote that globalization could be profoundly deleterious to the capacity of some countries to provide for all their citizens, especially people with disability. The chapters in this series have clearly identified the different capacities of countries to meet the needs of their disabled citizens, as well as cultures within countries, and, of course, individuals within cultures and local communities. Thus, although we look to globalization with optimism, we understand and respect the choice of diverse countries, communities, and individuals to make their own decisions. The chapters have highlighted the fact that not all voices are heard with the same intensity. In our introduction to this series, we lamented the fact that we were unable to represent many populations adequately. Nevertheless, our thinking in preparing these volumes was informed by voices from other places, voices that are not reproduced in these volumes, but does this type of “silent” or “secondary” representation equate to actual participation? It is clear that considerable effort is required to represent voices that are not usually heard. The assumption that globalization can equalize voices is a fallacy. Indeed, several chapters in this series comment on the unequal representation of particular populations and the methods that are being designed to give voice to silenced populations (see chapters by Campbell; Morrissey; and the many other personal narratives throughout the volumes). The narratives are particularly important to the series because they represent voices of women and men who may not otherwise publish their stories, so we may not otherwise have the opportunity to learn from their experiences. In each volume, we have combined scholarly texts with those written from personal experience, narratives that reflect reality from the perspective of those who are living with disability rather than from those who study disability. We have combined the power of personal narratives with the rigor of academic research to highlight the value of the community voice and place it on the same level as empirical and scholarly theory and professional practice. All perspectives are important. It is only through cross-fertilization that perspectives are enhanced and solutions become apparent. Indeed, the chapters in this series have identified both strengths and weaknesses in all countries—lessons to be learned in all directions. Throughout, there are strong common global messages that all people with disability seek to be valued, understood, and respected in all areas of their lives. They seek to be accepted as they are, rather than placed into stereotyped categories, judged, and asked to prove themselves. They seek to be connected to other people and to have dreams for the future. Around the world, systems are seeking to be more responsive to the needs of people with disability. Important trends are apparent in this series, including the need for systems to respond from a perspective of health rather than disease or deficit, for professionals to promote autonomy and capacity rather than to deplete natural resources and support systems, for communities to honor the relational and contextual nature of life rather than creating silos and pockets of isolation for people with disability. Given these global trends and demands, it is plausible then that global collaboration might lead to a stronger and unified voice

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for people with disability. We hope that this series goes some way toward reclaiming the globalization movement for people with disability. Perhaps if we approach the diverse global community with tolerance and respect as core values, then we may see a day when disability is a part of life, just like our gender, our height, our religion, and the color of our skin. That was one of our hopes—only time will tell, but it is an honor to have been a part of the discussion. We hope that this series becomes part of the process of finding a way forward that both respects diversity, yet contributes to the elimination of disparities.



Index

Aboriginal people. See Indigenous model of health; SIPES model of well-being Accessibility, 254, 306–7; from stigma and separation to accommodation and, 247–49 ADAPT framework, 11–12 African Americans, xvi. See also Race and ethnicity Alcohol use. See Nigeria American Psychological Association (APA), 145 Americans with Disabilities Act of 1990 (ADA), xvi, 22, 31, 242, 251; definitions of disability, xix Amnesia, posttraumatic, 107 Annan, Kofi, xxi Antidiscrimination laws: first countries to adopt, 22. See also specific legislation Appraisal, 50 Asperger’s syndrome, 213 Association for Persons with Severe Handicaps, The (TASH), 296 Attachment theory, 51–52 Australian Indigenous health, 111–13. See also SIPES model of well-being Autism, experience of parenting a child with, 81, 82–89; changeable

child, 86–87; depression, stress, and exhaustion, 92–93; devastation, 90; discovering a diagnosis, 83–84, 93; emotional rollercoaster, 89–94; grief and loss, 91; guilt, 91; having to battle over everything, 84; isolation, 91–92; loss of control, 94; negotiating the hostile system, 84–86, 93–94; never-ending story, 94–96; relationship stress, 87–88; research on, 81–82; searching for answers, 83; sibling stress, 88–89; suboptimal services, 84–86; the system’s lack of regard for carers, 84–86 Autonomy, 17; ability to act with, 24; acting for oneself, 297–99; definitions and related terms, 18–20, 23; legislation and, 22–23; professional support and, 23–24; providing opportunities to function with, 24; types of, 21, 28–29. See also Supporting (and maintaining) autonomy Awareness for disability, increasing, 254 Barlow, Lauraine, 113–14, 123, 124 Becker, S., 39–42, 44, 53 Black, A. E., 25

312 Brain injury: as family affair, 101–2; taking care of someone with a, 100–110 Britain, 53 Browning, Elizabeth Barrett, 291–92 Browning, P., 25 Bullying, 220–21; defining, 224; experiences of, 224–25; frequency of physical and relational, 226–27; incidence, locations, and types of, 229; parents’ thoughts about, 226–28; possible informants, 227; provocative behavior and, 220–21, 224; research on, 220–21; responses of others to, 225–26; and safety of child’s environment, 226–27; students’ discussions about, 224–26; teachers’ role in preventing, 230–31; teacher views on, 229–31 Bullying prevention programs, 226, 229–30; beliefs about, 227–28; future, 230; KINDD model, 231–35; lessons for developing, 231; wholeschool approach, 234 Bush, George H. W., 31 Canada, 22 Cardol, M., 21 Caregiver roles, 129; case manager vs. daughter, 129–36. See also Young caregiving Caregivers, 129–30, 136–37; financial burden, 129–30, 136–37; “surely someone can support me,” 135. See also Young carers Carter Center Mental Health Program, ix–x Case management, 129. See also under Caregiver roles Children: with disabilities, 158, 160. See also Young carers Choice, 19, 22, 32, 293. See also Autonomy Citizenship and mental health: concern, prejudice, and stigma in the public domain, 191–92; contradictory imperatives of coercion and recovery, 191–94 (see also under Mental health problems); moral and socioeconomic priorities of politicians, 193; therapeutic social control, 193–94 Civil rights movement, xvi

INDEX Classroom: supporting autonomy in, 27–28. See also Bullying Clinical work, disability competency within, 145–49 Cochlear implant, 241 Cognitive autonomy support, 28, 29 Commission on Rehabilitation Counselor Certification (CRCC), 23–24 Communication Access Realtime Translation (CART), 242, 243 Communication technology. See Information and communication technology Community, x Community health centers, 6 Community support: building, 249. See also Support Computers. See Information and communication technology Control, loss of, 94 Coping resources, 50 Coping strategies, 50 Courtesy stigma, 47 Crisis counseling, 9 Critical realism, 186 Cultural encapsulation, 146 Deaf persons. See under Muslim community Deci, E. L., 25 Decisional autonomy, 21 Decision making, 19 Declaration of Independence, 17, 20 “Declaration of independence,” 26 Deficit model, 21 Denial, 90, 93–94 Dependence, 51 Depression. See under Autism Described and Captioned Media Program (DCMP), 243 Developing countries, xvi. See also Economically developed countries Developmental disabilities: defined, 220. See also Bullying Developmental Disabilities and Bill of Rights Act (DD Act), 22, 31 “Digital town square,” 65–69 Disability competency within clinical work, 145–49 “Disability identity,” 304 Disability identity development model (DIDM), 139, 147–48

INDEX Disability(ies): barriers to making it unessential, 69–70; causes, 265–66; context and, 307; definitions and meanings, xix, 21, 64, 259–60; life’s journey with a, 139–45; opportunities to make it unessential, 67–69; overview, xiii; promoting cure, prevention, and amelioration of, 306 Disability psychology, 145–49 Disability rights perspective: on young caregiving, 41. See also Legislation; Rights-based approach to disability Disability theory, 185, 195 Disabled person(s): goals, 32; opportunities to “remove” or reduce their disability, 306; terminology, 30n.1, 304 Disaster responses: recommendations for better, 10–12; in U.S. over past decade, 8–10, 12 Disasters and mental health, 2–3, 12. See also Hurricane Katrina Discrimination: race, ethnicity, and, xv, xvi Dreams (of normalization): dreaming big, 293–94; examples of chasing, 289–91, 294–99; focusing positive energy on one’s, 291–93 Drug abuse. See Nigeria Economically developed countries, less, 155–56, 161–63, 163n.1, 307. See also Developing countries; specific countries Economic deprivation: and mental health problems, 187–88. See also Poverty Education, 267–70. See also Bullying; Classroom Elwan, A., xiv, xvi Emotional health, 120–21. See also Disability psychology Employment: among disabled People of Color, 153–55; in dangerous jobs, 154; disability and, 152–55, 160–63, 266–67; and mental health, 187–88 Ethnicity. See Race and ethnicity Executional autonomy, 21 Family commitment, lifelong, 213–14 Family ecology model for understanding reactions to parental illness, 50

313 Family Futures Planning Project, 295 “Family health situation,” defined, 56n.1 Family members: how disability effects daily life of, 201–7; “whole family approach” to meeting needs of young carers, 54 Family structure and foster care placement, 176 Family systems-illness model, 51 Fathers. See Mothers and fathers Fear, 292 Federal Emergency Management Agency (FEMA), 2–4, 6, 9 Financial burden and support, 136–37. See also Poverty Foster care, intellectual disability in, 169, 173–74, 177–78; childrelated risk factors, 174–75; family and community factors, 175–77; programmatic case study, 171–74; protective and favorable outcomepromoting factors, 177–78; and reunification, 177–78 Foster care placement, 170; disability and, 170–71 Friendships, 105–9. See also Social relationships Galloway, D., 234 Gender differences and gender roles, 189. See also Mothers and fathers Global collaboration, 301–3 Globalization movement in health arena, 301–3, 307–9 Global perspective on health and disability, 155–61, 307–9 Goodworkers Movement International, 284 Gould, M., 30 Grief, 91 Grief theory and stages of grieving, 291–92 Group advocacy, 30 Guilt, 91 Gulf Coast: as region of disadvantage, 4–5. See also Hurricane Katrina Halloran, W. D., 29–30 Hawks, S., 124 Health: definitions, conceptions, and models of, 123 (see also SIPES model

314 Health: definitions (cont’d) of well-being). See also under SIPES model of well-being Health professionals, when disability strikes, 99–109; return to work, 109–10 Hearing impairment, 240–45, 296 HelpHandicap Foundation, 252 Ho Chi Minh City, 258–59, 262, 269. See also Vietnam Holistic health, 112. See also SIPES model of well-being Human rights legislation for persons with disabilities, 22–23; first countries to adopt, 22. See also specific legislation Hurricane Katrina, 1–2; case vignettes, 3–4; depleted health services, 5–6; Gulf Coast as region of disadvantage, 4–5; and mental health, 2–4 (see also Disasters and mental health); protracted recovery and retraumatization, 7–8; social disconnection, 6–7. See also Disaster responses Hurricane Rita, 2 IARCCA, an Association of Child and Family Services, 171 Ignorance, tackling, 248–49 Inclusion, 22, 290. See also Dreams (of normalization) Independence, 22, 32. See also Autonomy; “Declaration of independence” Indiana Association of Residential Child Care Agencies (IARCCA), 171 Indigenous issues, x, 281, 285. See also specific cultures Indigenous model of health, 112–13. See also SIPES model of well-being Individuals with Disabilities Education Act (IDEA), 22, 27, 29 Information and communication technology (ICT), 61–62, 307; and disability in a Norwegian context, 64–65; and the experience of solitude, 70–73; ICT experiences of disabled youths, 65–76; and the notion of disability, 67–69; and permeability of the real and virtual, 73–77; research on disabled people, social relations, and, 64; research on youth, social relations, and, 62–63

INDEX Instant messaging (MSN), 63, 66–68, 72–76 Integration into mainstream society, 22. See also Dreams (of normalization) Intellectual health, 116–17. See also Foster care, intellectual disability in Intensive care unit (ICU), experience of, 102–4, 106 International Classification of Functioning, Disability and Health (ICF), xiii International Convention on the Rights of Persons with Disabilities (ICRPD), 156. See also under United Nations Internet, 63, 71, 75–76; resources on, 243–44. See also Information and communication technology Islam, 277. See also Muslim community Isolation, 91–92. See also Information and communication technology; Solitude of young disabled persons “Journeys of Healing” (Barlow), 113–14, 123, 124 Kant, Immanuel, 18 Kenya, disability in, 156–59 Kenya National Commission on Human Rights (KNCHR), 158–59 KINDD (knowledge, immersion, natural observation, data collection, and development) model. See under Bullying prevention programs Kübler-Ross, Elisabeth, 291 Kunitz, S. J., 301 Lau-Smith, J., 19 Least restrictive environment (LRE), 27 Legislation: autonomy and, 22–23; human rights, 22–23. See also specific legislation Loneliness. See Information and communication technology Maasai, 158 Marginalization, 146 Marital stress, 87–88. See also Mothers and fathers; Parental perspectives on disability Medicaid, 9–10 Medical naturalism, 186 Medical sociology literature on young caregiving, 41

INDEX Mekong River (Vietnam), 272–73 Mental distress, notion of, 195–96 Mental health: ecological effects on, 188–89; of Indigenous people, 117–18. See also Citizenship and mental health; Disasters and mental health; Hurricane Katrina Mental health problems, 198–99; coercive detention and treatment of, 192–94, 196, 197; epistemological perspectives on, 186; primary and secondary deviance, 194–98; race, ethnicity, gender, age, and, 189; social forces as determinants of, 186–89; typology, 190–91. See also Psychological difference Mental health professionals, role conflict and strain in, 193–94 Mental illness, 117, 118, 185, 186, 190, 192; Indigenous taboos regarding, 280; in Nigeria, 276, 280–81; physical illness and, 196–98 Micro-financing, xv Middle adulthood, 33 Moral order, 193 Mothers and fathers, 87–88, 214–15; different but equal contributions, 212–13; different coping strategies, 207–9; different responses of helping agencies, 211–12; different social expectations for, 203, 209–11. See also Parental perspectives on disability MSN (instant messaging), 63, 66–68, 72–76 Muslim community, American, 239–40, 253; challenges of a deaf participant at community events, 240–45; inclusion of individuals with disabilities in, 249–53; recommendations for, 254–55; reflections on disability in Chicagoland, 245–49 Nagata, K. K., 155 National Center for Accessible Media (NCAM), 243 National Court Reporters Association (NCRA), 244 National Response Plan, 8 New Orleans. See Hurricane Katrina Nigeria, 275, 286; alcohol use, 278–79; combination of substance abuse and mental illness, 276, 280–81;

315 cultural dynamics, 277–78; cultural taboos and traditional healers, 285; demographics, 277; future directions regarding substance use in, 286; history, 276–78; hypnosedative use, 280; igbo (marijuana) use, 279; influence of American culture, 276, 285–86; most commonly abused drugs in, 278–80; stimulant use, 279–80; substance abuse prevention efforts, 283–84; substance abuse treatment issues, 284–85; substance use among “area boys,” 281; substance use among commercial workers, 282; substance use among inmates, 281–82; substance use among students, 282–83; tobacco use, 278, 279 Nongovernmental organizations (NGOs), 161, 252, 258 “Normalization,” 21. See also Dreams (of normalization); Integration into mainstream society Norway, 63–65; “digital town square” (central meeting place), 65–67. See also Information and communication technology O’Brien, J., 293–94 Older adulthood, 33 Organizational autonomy support, 28 Parent, W. S., 20 Parental disability/illness, impact of, 46; negative, 47–48; positive, 48–49; predictors of, 49. See also Young caregiving Parental perspectives on disability, 214–15; case study, 201–7; a lifelong family commitment, 213–14. See also Mothers and fathers Parentification, 51 Parenting: with a disability, 42–43. See also Mothers and fathers; Supporting (and maintaining) autonomy Paternalism, 194 Paternal model, 21 Pedersen, S., 50 People of Color with disabilities, 151; in United States, 152–55 Perske, Robert, 18

316 Persons with Disabilities Act of 2003 (PDA), 156 Persons with disabilities (PWDs). See Disabled person(s); specific topics Philippines, disability in, 159–61 Positive behavior system (PBS), 229 Posttraumatic amnesia (PTA), 107 Posttraumatic stress disorder (PTSD), 3, 7 Poverty (and disability), xiii–xvi, 155; foster care and, 176; and health, 121; and mental health problems, 187–88; race, ethnicity, and, 153–54, 161–63. See also Caregivers, financial burden; Economically developed countries, less Preventable disability, 305–6 Procedural autonomy support, 28–29 ProjectReadOn, 243 Psychiatry, 192–94 Psychological difference, social forces as determinants of judgments about, 190–92 Psychological disability: similarities and differences between physical and, 196–98. See also Mental health problems; Mental illness Quality indicators, O’Brien’s, 293–94 Race and ethnicity, xv–xvi; and mental health problems, 189. See also under Poverty Racial/ethnic minorities, 151–55; reasons for higher rates of disabilities among, 153. See also People of Color with disabilities Racial oppression, 151–52 Redlener, I., 2 Rehabilitation. See Brain injury Rehabilitation Act of 1992, 22, 31 Rehabilitation Counselor Certification, Commission on, 23–24 Relationships, social. See Friendships; Social relationships Resilience, 52 Respect, 293 Revenson, T. A., 50 Rice, B. D., 32 Rights-based approach to disability, 303–4. See also Disability rights perspective; Legislation

INDEX Risk, dignity of, 18 Risk/resilience framework, 52 Rock-climbing demonstration, 289 Rolland, J. S., 51 Schools. See Bullying; Classroom; Education Self-advocacy, 29–30; group, 30 Self-determination, 18–19, 22, 28, 29; defined, 19. See also Autonomy Self-management, 25. See also Autonomy September 11, 2001 terrorist attacks, 7 Serna, L., 19 Shame, 292 Sharing places, 293 Sibling stress, 88–89 SIPES model of well-being, 111–14, 123, 124; emotional health represented by fourth (ring) finger of left hand, 120–21; intellectual and mental health represented by left index finger, 116–18; physical health represented by middle finger of left hand, 118–20; social health represented by left thumb, 114–16; spiritual health represented by small (fifth) finger of left hand, 121–23 Sisson, Graham, 20 Skills, improving, 293–94 Skype, 67, 68 SMS (text messages), 63, 66 Sobsey, R., 232, 233 Social, intellectual, physical, emotional, and spiritual (SIPES) aspects of health. See SIPES model of well-being Social constructionism/constructivism, 186, 193–94, 196 Social construction of disability, 64–65; shift from biomedical construction to, 303 Social disconnection, 6–7 Social exclusion, 304 Social forces: as determinants of judgments about psychological difference, 190–92; as determinants of mental health problems, 186–89 Social relationships, 294; barrier in establishing, 75–76; opportunity to enhance, 73–75 (see also Information and communication technology). See also Friendships

INDEX Social support. See Support Socioeconomic status (SES): and foster care placement, 176. See also Poverty Solitude of young disabled persons: barrier to escaping, 71–73; experience of, 70–73; ICT as opportunity to escape, 70–71 Spiritual health, 121–23 Stafford Act, 9 Stefanou, C. R., 28 Stigma, 47–48, 191–92, 247, 304–5 Stress and coping theory, 49–50 Stress process models, 49–50 Stroke patient, caregivers of a, 130–32; eighteen months poststroke, 135–36; fourteen months poststroke, 133–34; ten months poststroke, 132–33 Substance use disorders. See Nigeria Support: building community, 249; financial, 136–37; need for, 135; professional, and autonomy, 23–24. See also under Young carers Supporting (and maintaining) autonomy, 25; adult roles and, 32–33; disabilities and, 20–34; features of, 28; as life commitment, 25–26; in postschool environments, 31–32; at preschool age, 26–27; at school age, 27–30; throughout adulthood, 30–33 Support systems, building internal, 254 System, confronting an unhelpful, 84–86, 305. See also under Autism; Mothers and fathers Szasz, Thomas, 186, 193–94, 196 TASH (The Association for Persons with Severe Handicaps), 296 Technology. See Information and communication technology Text messages (SMS), 63, 66 Thayer, T., 32 Trauma, psychological. See Posttraumatic stress disorder Unemployment. See Employment United Kingdom (UK), 53

317 United Nations (UN), 22–23; Convention on the Rights of Persons with Disabilities, xiii, xxi, 22, 302, 306 (see also International Convention on the Rights of Persons with Disabilities) Universal design of facilities, 254–55 Values, 293–94; building on one another, 294–95 Vietnam, 257, 259–64; definition and prevalence of disabilities in, 259–62; demographics of people with disabilities, 264–66; dispatches from, 258–59; employment issues, 266–67; hopes and dreams for persons with disabilities (PWDs) in, 270–72; journey to Mekong River, 272–73; unmet needs, 268; voices of people with disabilities in, 257, 262–71 Violence, exposure to: and foster care placement, 176–77 “Voices of Persons with Disabilities, The” (survey instrument), 263–64 Walmsley, J., 51 Wehmeyer, M. L., 19 Young caregiving: experience of, 45–46; factors that pull and push children into, 44–45; impact, 43–44, 46–49; nature of, 43–44 Young carer field, research traditions in, 40–41 Young Carer of Parents Inventory (YCOPI), 45–46, 55; factors and themes in, 45–46 Young carers, 40; contextual process models for understanding, 49–51; defined, 39–40; family-level support for, 54; parent-level support for, 54; pathology and risk models for understanding, 51–52; policy and, 52–53; prevalence, 41–42; research on, 55–56; service provision for, 53– 55; systemic-level support for, 54–55 Youths, disabled, 65




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leadership. Her most recent book is Women and Leadership: Transforming Visions and Diverse Voices (Blackwell, 2007) and an upcoming three volume set on Diversity in Mind and in Action (Praeger Press, in press). Sue Kroeger, Ed.D., is currently Director of Disability Resources at the University of Arizona. Prior to coming to Arizona in 1999, she was Director of Disability Services at the University of Minnesota for 14 years. She manages a staff of 40 full- and part-time employees that, guided by a social construction of disability, provide services to faculty, staff, and students with disabilities, assist the university in meeting its legal obligations, and provide consultation and education on designing inclusive learning and working environments. Sue received her master’s degree in rehabilitation counseling at the University of Arizona and her doctorate in human rehabilitative services at the University of Northern Colorado. Prior to coming to higher education, she worked in public and private rehabilitation. In addition to her administrative duties, Sue has presented at numerous conferences, published articles on disability and higher education, and coedited a book titled Responding to Disability Issues in Student Affairs. She has been Treasurer and President of the National Association of Higher Education and Disability. She holds adjunct faculty status in the Department of Rehabilitation, where she teaches undergraduate courses in disability studies and advises graduate students. Sue has been principal investigator for numerous federal grants and has consulted nationally and internationally. Paul Leung, Ph.D., is currently Professor in the Department of Rehabilitation, Social Work and Addictions at the University of North Texas. He has held previous academic and administrative appointments at Deakin University (Melbourne, Australia), the University of Illinois–Urbana, the University of North Carolina at Chapel Hill, and the University of Arizona. Paul’s interests have included rehabilitation and disability of persons from diverse racial/ethnic backgrounds and students with disabilities. He is a fellow of the American Psychological Association (APA) and a past president of APA’s Division of Rehabilitation Psychology (22), the National Council on Rehabilitation Education and the National Association of Multicultural Rehabilitation Concerns. He is a recipient of APA’s Division 22 Lifetime Achievement Award. Joseph E. Trimble, Ph.D., formerly a Fellow at Harvard University’s Radcliffe Institute for Advanced Study, is Professor of Psychology at Western Washington University. He has held numerous offices in the International Association for Cross-Cultural Psychology and the American Psychological Association (APA). Joseph holds Fellow status in three APA divisions. He is past President of the Society for the Psychological Study of Ethnic Minority Issues and a former council member for the Society for the Psychological Study of Social Issues. He has generated over 130 publications on cross-cultural and ethnic topics in psychology, including 17 edited and coauthored books. His recent books include the Handbook of Ethical Research with Ethnocultural Populations and Communities and Counseling across Cultures (6th ed.).


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Currently, Mariah, a writer and consultant, resides in Tucson, Arizona. During her two-year tenure working for the Tohono O’odham Community College as their first writing instructor, Mariah was also a member of the Tohono O’odham Nation’s Radio Task Force. As an avid writer and perpetual student, Mariah served a total of three years as a student editor for Red Ink: An American Indian Student Publication and has had her poetry published in publications such as Brooklyn Review, Cimarron Review, Salt Fork Review, as well as Sister Nations: A Native American Woman’s Anthology. Elizabeth Kendall, Ph.D., is Research Professor at the Griffith Institute of Health and Medical Research, Griffith University, and Associate Director of the Centre for National Research on Disability and Rehabilitation, at Griffith University and University of Queensland. She has a B.A. in psychology and special education and postgraduate qualifications in rehabilitation psychology. Elizabeth completed her doctorate in 1997 on adjustment following traumatic brain injury and received the Dean’s Commendation for Outstanding Ph.D. Thesis (University of Queensland). She was awarded a Medal for Excellence in Research Supervision in 1999, and all her graduate students have also received commendations for excellence. For the past 20 years, she has maintained both community/clinical practice and a research agenda in the issues faced by people with acquired disabilities or chronic conditions. She has focused on participatory methods for developing innovative service models. Elizabeth has published in over 60 international peer-reviewed journals and books and maintains an active role in the development of non-government organizations that address gaps in service delivery for people with disability or chronic disease. Catherine A. Marshall, Ph.D., CRC, NCC, is Research Professor in the department of Educational Psychology, Northern Arizona University, and Adjunct Professor, Centre for National Research on Disability and Rehabilitation Medicine, Griffith University, Australia. She has more than 25 juried publications. Recently, her work has focused on cancer as a chronic illness/disability and the impact of the cancer experience on the family. In April 2007, Catherine received a Ruth L. Kirschstein National Research Service Award for Individual Senior Fellowship, funded by the Department of Health and Human Services, National Institutes of Health, National Cancer Institute to support her new work. Catherine is a Senior Scholar with the UA National Center of Excellence in Women’s Health. A Fulbright scholar who researched the needs and resources of Indigenous people with disabilities in Oaxaca, Mexico, her research in Oaxaca was also sponsored for six years by the National Institute on Disability and Rehabilitation Research. Catherine was the recipient of a 1997 National Council on Rehabilitation Education Outstanding Researcher of the Year award for research with American Indian families and chronic illness/disability. She is Founder and President of the nonprofit organization Women’s International Leadership Institute (WILI; www.wili.org), the purpose of which is to benefit low-income women seeking to improve their educational and economic status. Through WILI, Catherine participated in the coordination of the 2004 international forum Participatory Action Research and Indigenous Ways of Knowing in Oceania and the


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United States: Women as Researchers and Partners in Community-Based Disability and Rehabilitation Research.

ABOUT THE CONTRIBUTORS Dianne Barnett, RN; M. Remote Health Practice; M. Remote Health Management, has been working as a registered nurse since 1972 and currently holds the position of District Director of Nursing with the Mackay Health Service District. Dianne holds qualifications in the areas of community health, midwifery, and child health. Additionally, she has obtained master’s degrees in both remote health practice and remote health management through Flinders University of South Australia. Dianne has spent the majority of her career in rural and remote areas of Queensland and Western Australia in the preferred area of indigenous health. Her understanding of the cultural gaps in Western medicine’s ability to meet the spiritual and emotional needs of Australian Aboriginal peoples has caused her to develop a more comprehensive and holistic approach to health service delivery. Leda Barnett, B.A., B.Ed., B.Psych.(Hons)., is an Australian Aboriginal woman; her grandmother was taken from her family as a baby (one of the stolen generation). Her educational qualifications are in arts, education and psychology and she is currently working as a psychologist-intern. Leda has published articles on indigenous ways of knowing and indigenous women with disabilities and has researched chronic disease management in Australian Aboriginal communities. Her experiences in indigenous research have allowed her to explore the meaning of holistic health in Australian Aboriginal culture and its relationship with Western medicine. Bedarius Bell Jr., M.S., C.R.C., is a Certified Rehabilitation Counselor (CRC) who received his master’s of science degree in rehabilitation counseling from Auburn University. He has worked for 10 years as a Vocational Rehabilitation Counselor for the Alabama Department of Rehabilitation Services, serving the deaf and hard-of-hearing populations. Bedarius is the current President of the Alabama Association of Multicultural Rehabilitation Concerns. He is also a doctoral student in Auburn University’s Department of Rehabilitation and Special Education. Isra Bhatty, B.A., is studying for her J.D. at Yale Law School and her MPhil at Oxford University. In 2006, she graduated from the University of Chicago with bachelor’s degrees in Economics and Near Eastern Languages & Civilizations. Her research interests are in criminal law, disability law, and comparative Islamic law. Sally Borbasi, R.N., Ph.D., is Professor of Nursing in the School of Nursing and Midwifery, Griffith University, Brisbane, Australia. She is a long-standing nursing academic and qualitative researcher with a particular interest in phenomenologies. Sally has a background in nursing care of people with a

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disability as well as acute and critical care nursing. She has conducted studies exploring the quality of life of people with a disability who transition from institutional type care to community settings. Sally is a member of the Griffith Abilities Research Group. Elaine A. Burke, Psy.D., is Associate Professor at Alliant International University, California School of Professional Psychology, in Los Angeles. She received her degree from the University of Denver, School of Professional Psychology. Her research interests include health and neuropsychology, sex roles and gender, and multiculturalism and internationalism. Elaine has numerous publications/ presentations related to her interest areas. She spent a semester in Kenya during her sabbatical. During that time she was teaching, developing a program, and conducting research related to health and gender issues in Kenya. Samantha Bursnall, B.Beh.Sc. (Hons), Ph.D., is a psychologist within the Department of Child and Family at the Tavistock Centre and an affiliated inner London Child and Adolescent Mental Health Service (CAMHS) that specializes in disability and autism. She has a particular research and clinical interest in the impact of disability and illness on family members and has been involved with a number of published articles and book chapters on the subject both in Australia and the United Kingdom. Samantha’s research has focused on young carers, the impact of acquired brain injury on siblings, and parenting a child with autism and learning difficulties. Tara Catalano, BA (Hons), MHuServ (Hons) has extensive practice and research experience in the area of disability and chronic illness over the past 15 years. Tara began her career in human services working in the community with seniors in her hometown of Staten Island, New York. Following a move to Australia in the mid-1990s, she worked in collaboration with people with intellectual disability and their families for a number of years in the community sector before shifting to the university environment. She has particular interests in the individual and family perspective, the interaction between service users and service providers, self-management of chronic illness and acquired disabilities (e.g., acquired brain injury), peer support interventions, and partnerships between and within the health and community sectors. Crystal L. Cederna, M.A., is a doctoral student in the School of Psychological Sciences at the University of Indianapolis, where she also received a master’s degree in clinical psychology. Her doctoral studies have an emphasis on child and health psychology, and she has aspirations of serving this population through the provision of evaluative and psychotherapeutic services. Debra Domalewski B.Hum.Serv (Rehab Couns) is a rehabilitation consultant at CRS Australia. Debra was awarded the Human Services Medal for academic excellence and the Rehabilitation Association of Australasia award for the highest achieving graduate in the rehabilitation stream. Debra is currently studying for her Ph.D. at Griffith University. Her research experience has included projects in the field of community rehabilitation, adolescent health


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issues, international research partnerships, health partnerships, and community rehabilitation curriculum development. Her current research interests are partnerships, rehabilitation, and community development. Heather Douglas, Dip OT, MSWAP, MBA, Ph.D. Candidate. Heather has a long-standing interest in the exclusionary aspects of disability. After working as an occupational therapist, Heather broadened into community capacity building. Later she developed a research agenda on change processes in social policy and also within organizations. Some of her research considers the exclusion of disadvantaged groups from decision making. She has published in social change processes and management of small organizations such as those that offer services to people with disabilities. Currently, Heather is researching social entrepreneurship as a change process and is a Ph.D. candidate at Griffith University in Brisbane, Australia. Jennifer Gibson, Ph.D. is on staff as a psychologist at the University of California, Davis. Her research interest is the advancement of mental health care to clients with disabilities. She is a,writer, consultant, and provides disability competency training to mental health professionals nationwide. In 2006, she won the Disability Service Award for distinguished contributions in promoting disability within education from the American College Personnel Association’s (ACPA) Standing Committee on Disability. Roy Grant, M.A., is Director, Applied Research and Policy Analysis, The Children’s Health Fund, New York. He has published more than two dozen articles in peer-reviewed journals and book chapters on diverse topics including infant and early childhood development, disaster mental health, and public health policy, with a focus on high-risk and medically underserved populations. Shelley R. Henthorne is a third-year doctoral student in rehabilitation and special education at Auburn University. She received her undergraduate degree in mild learning behavioral disorders in 2001 and her master’s degree in collaborative teacher special education in 2003, both from Auburn University. Shelley is a member of the Council for Exceptional Children and Delta Epsilon Iota Honor Society. Her research interests include transition and parent involvement in education. Doris Adams Hill is a board-certified behavior analyst and a doctoral candidate in rehabilitation and special education with a focus in autism and behavior disorders at Auburn University. She entered the teaching field after a career as an officer in the U.S. Army. Doris has presented at numerous conferences alone in and in collaboration with other professional educators. She is currently working on her dissertation and several other articles in the field of autism and leadership. Melissa Kendall Ph.D.; B.Sc. (Psych), Grad. Dip. App. Sci (Prof. Psych), MHumSrv, is Research and Development Officer for the Transitional Rehabilitation Program (Queensland Spinal Cord Injuries Service) and the Acquired

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Brain Injury Outreach Service, both state-funded community rehabilitation services for people with spinal cord injury and acquired brain injury, respectively. She is also a doctoral candidate with the School of Human Services, Griffith University. Melissa has an emerging publication record on rehabilitation- and disability-related topics and has research interests in the areas of long-term care needs, friendship, and social support following injury. Eilis Kennedy, M.B., B.Ch., B.A.O., M.R.C.Psych., is a Consultant in child and adolescent psychiatry at the Tavistock Centre, London. She works in a team offering a specialist psychotherapy service to children with autism and their families. Eilis is particularly interested in the impact of autism on the family system. She is involved in a number of research projects evaluating the effectiveness of psychological treatments in child and adolescent mental health and has published several articles in this area. Steven M. Koch, Ph.D., H.S.P.P., is an Adjunct Assistant Professor for the Department of Pediatrics, Indiana University School of Medicine. He is a school psychologist on the interdisciplinary team at the Riley Child Development Center, where he assesses children with suspected intellectual and neurodevelopmental disabilities. In 1998, he was given the Friend of Children Award for his work on measuring outcomes for children in foster and residential care. Rocky Liesman is Clinical Psychology resident with the U.S. Air Force. He received his doctorate training at Wright State University’s School of Professional Psychology, where he received the Elizabeth B. Wolf Award for his outstanding enthusiasm, compassion, optimism, collegiality, and contribution to the field of clinical psychology. Rocky completed his doctoral dissertation on the subject of bullying among children with developmental disabilities and has been published in the National Psychologist. Patricia “Denise” Lopez, Ph.D., is Assistant Professor at Alliant International University, Marshall Goldsmith School of Management, in Los Angeles, California. She received a Ph.D. in Organizational Psychology from Columbia University, New York. Her research and consulting interests include organizational behavior, change management, workforce diversity, multiculturalism, and internationalism. Denise is originally from the Philippines and previously taught various courses in organizational behavior and human resource management at the Asian Institute of Management. Stephanie L. Lusk, Ph.D., C.R.C., is Assistant Professor at the North Carolina Agricultural and Technical State University in Greensboro. She earned her doctorate in rehabilitation and her B.A. in psychology from the University of Arkansas and her master’s in rehabilitation counseling from Arkansas State University. Stephanie has prior work experience in career development and placement, transition planning, substance abuse treatment, and teaching addictions studies courses. Her primary areas of research interests include attitudes toward individuals with addictions; treatment and health disparities


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among substance users; relationships among culture, mental illness, and addiction; and co-occurring disorders among African American women. Paula A. Madrid, Psy.D., is Associate Research Scientist, Columbia University’s Mailman School of Public Health; Director, Psychosocial Preparedness Division, National Center for Disaster Preparedness, Columbia University; and Senior Director, Children’s Health Fund’s Mental Health Program. Paula’s research interests include trauma, PTSD, resilience, psychosocial preparedness, disaster recovery, and increasing community resiliency. She has published articles on establishing mental health services postdisaster and on the impact of trauma and children and those who care for them. David N. Morrissey, MPS, is the Executive Director of the United States International Council on Disabilities, based in Washington, DC. David was a member of the inaugural class of the Clinton School of Public Service at the University of Arkansas, through which he performed the fieldwork project in Vietnam recorded in this volume, earning his Master of Public Service degree in 2006. David was the 2007 Disability Policy Leadership Fellow with the Association of University Centers on Disabilities and advanced there to manage projects under federal contracts with the Administration on Developmental Disabilities and the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention. He has presented on the transition to adulthood for youth with disabilities, particularly youth with spina bifida, both nationally and internationally. Kenneth I. Pakenham B.A., M.A.P. (clinical), Ph.D. is Associate Professor in Clinical and Health Psychology in the School of Psychology at the University of Queensland, Australia. He has published over 70 refereed journal articles on disability, illness, and caregiving. In particular, Ken and his colleagues have pioneered intervention, measurement and theory development research in young caregiving. Melissa Palguta, B.S., is a doctoral student in the School of Psychological Sciences at the University of Indianapolis. She has a B.S. in psychology from the University of Wisconsin, Madison, and has experience treating and assessing children and adolescents in residential treatment facilities. Teresia M. Paul is a graduate student at North Carolina Agricultural and Technical State University, pursuing a master’s of science degree in rehabilitation counseling with a specialization in behavioral addictions. She received her B.S. in family and community services with a concentration in psychology and ethnic studies from East Carolina University. Teresia is currently a Rehabilitation Services Administration Long-Term Training Scholar. She has research interests in issues concerning culture, addiction, and mental health in the domestic and international arena. David Pilgrim B.Sc., M.Sc. (Soc), M.Psycol (Clin), Dip.Pscyhother., Ph.D. is Professor of Mental Health Policy at the University of Central Lancashire.

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He trained and worked as a clinical psychologist before completing a Ph.D. and going on to research various aspects of mental health services and policy. David has published extensively in these fields. Anne Rogers SRN, B.A. (Hons), M.Sc. (Econ), Ph.D. is Professor of the Sociology of Health Care in the School of Community Based Medicine at the University of Manchester. She has long-standing research interests in the sociology of mental health and illness and currently leads a program of research on self-management and long-term conditions. Rachel Rosen is Coordinator for Mental Health and National Programs at the Children’s Health Fund. She graduated cum laude from Tufts University with a B.A. in child development and community health. Rachel’s interests include psychosocial issues impacting children postdisaster/trauma. Rob Senior, M.B., B.S., M.Sc., M.R.C.Psych., is Consultant in Child and Adolescent Psychiatry and Senior Research Fellow at University College, London. He is currently Medical Director of the Tavistock and Portman NHS Foundation Trust. A systemic psychotherapist by background, Rob’s research and clinical interests are in the intergenerational transmission of psychological distress and disturbance and early intervention to improve outcome. Sylvia Söderström is Research Fellow at the Norwegian University of Science and Technology in Trondheim, Department of Social Work and Health Science. Her research interests are on disabled children and youth’s experiences of inclusion and exclusion in everyday life and on the social construction of disability. Sylvia’s Ph.D. project is on disabled youth and the significance of ICT in exclusion and inclusion processes in their everyday lives. She has earlier written on how children with congenital heart disease experience their everyday lives and social relationships. Connie Susa, M.Ed., has been a pioneering parent leader in Rhode Island. She was the first parent of children with disabilities to train and mentor her peers for the Rhode Island Department of Education. She led the initiative to create the RI Parent Information Network when federal funds became available. For the RI Developmental Disabilities Council, Connie helped build a curriculum and materials at the University of Rhode Island to plan for the future of aging parents and their adult sons and daughters with developmental disabilities. She was Director of Child and Family Services for United Cerebral Palsy of Rhode Island. Connie has written and presented extensively on the inclusion of individuals with disabilities in education, employment, and community life. Along with other families, she established and presently coordinates Personal Lifetime Advocacy Networks of Rhode Island. Mobin Tawakkul, M. Eng., is currently the Chair of Disability Needs & Awareness Working Group (DNA-WG) Committee for a U.S. non-profit organization called the Association of Muslim Health Professionals (AMHP). He received his bachelor’s degree in chemical engineering and master’s


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degree in pharmaceutical engineering from the University of Michigan in 2002 and 2003, respectively. His interests include investigating novel accessibility solutions available in American society that can educate and empower the American Muslim community to serve and assist those with disabilities. Jane W. Turnbull-Humphries, M.Ed, NCC, is a doctoral student in rehabilitation counseling at Auburn University and a National Certified Counselor. She was honored with the 2007–2008 Wendy Baker Memorial Endowed Graduate Award given for demonstrating outstanding spirit, abilities, and values while working with students with disabilities. She has presented and participated in research in areas such as self-advocacy, autonomy, diversity, HIV/AIDS awareness, eating disorders, and posttraumatic stress disorder. Her current dissertation area of interest is the underutilization of group work in vocational rehabilitation settings. Jo Violet, M.B., B.S. (Lond), D.C.H., M.R.C.Psych., is Consultant in Child and Adolescent Psychiatry, with an interest in psychotherapy. At the time of the research informing her chapter, she was working in an inner London Child and Adolescent Mental Health Service (CAMHS) affiliated with the Tavistock and Portman NHS Foundation Trust that specialized in disability and autism. Jo has an interest in the broad spectrum of disability and developmental disorders within children and has worked in child and adult psychotherapy. Her CAMHS service involvement included diagnostic work of children with suspected autism and psychotherapy with parents who had a child with a disability. Jacqueline Remondet Wall, Ph.D., H.S.P.P., C.R.C., is an Associate Professor in the School of Psychological Sciences at the University of Indianapolis. Trained in rehabilitation and industrial-organizational psychology; much of her work has been consulting with organizations that provide human service, including developing methods of monitoring outcomes. Mohammed Yousuf is currently the President and Founder of HelpHandicap Foundation. He is a certified aging-in-place specialist (CAPS) and an accessibility specialist. He is a co-chair of People with Disabilities Affinity Group and a member of Diversity Impact Forum. He received his bachelor’s degree in electronics and communication engineering from Osmania University in 1988, master’s degree in computer engineering from Wayne State University in 1992, and CAPS certification in 2006. He completed Harvard University’s program in Universal Design, Fair Housing & ADA/ABA Guidelines in 2007. Stephanie T. Zito is a doctoral student in special education at Auburn University. Her research interests include self-determination and peer mentoring for students with disabilities. She is a member of the Honor Society of Phi Kappa Phi and currently serves as Graduate Student Vice President for the Auburn chapter.


Disabilities



Volume 3 Responses: Practice, Legal, and Political Frameworks Edited by CATHERINE A. MARSHALL, ELIZABETH KENDALL, MARTHA E. BANKS, AND REVA MARIAH S. GOVER Foreword by Thomas Bornemann




Contents


ix

Preface Paul Leung

xiii

Introduction

xix

Chapter 1.

Chapter 2.

Evolution of Disability Policies and Practices in the United States: Implications for Global Implementation of Person-Centered Planning Carol J. Blessing, Thomas P. Golden, and Susanne M. Bruyère Global Networking, Social Justice, and Implications for Chronic Illness and Disability Elizabeth Kendall and Catherine A. Marshall

Chapter 3.

Disability in the State of Qatar Asma Al Attiyah and Marcellina Mian

Chapter 4.

Attitudes toward Inclusion in Primary Education in Greece Maria Agorastou, Efrosini Kalyva, Efthalia Kaderoglou, and Filippos Stefanidis

1

17 27

43

vi

Chapter 5.

Chapter 6.

Chapter 7.

Chapter 8.

Chapter 9.

CONTENTS

Vocational Rehabilitation at a Cancer Agency in Canada: A Pioneer and Model Service When Cancer Results in Disability Maureen Parkinson Mental Health Care in Turkey: Present Status and Future Directions Rebecca Spirito-Dalgin, Tuncay Ergene, Joseph Marrone, and Kerim Munir What’s All This about a “World” Wide Web? The Need and Mandate for Web Accessibility Joe E. Wheaton and Patrizia Bertini

63

83

95

Disability, Legal Mobilization, and the Challenges of Capacity Building in Sri Lanka Fiona Kumari Campbell

111

Disability Management: A Global Response to Disability in the Workplace Nicholas Buys and Christine Randall

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Chapter 10. When Systems Hurt Rather than Heal: Outcomes Following Pyschological Injury at Work Elizabeth Kendall and Heidi Muenchberger Chapter 11. Equal Treatment in Working Life for People with Disabilities: Sweden and Norway Perspectives Marianne Hedlund, Bodil J. Landstad, and Åsa Svensson Chapter 12. Wellness Rhetoric: Implications for Policy and Practice in Australian Childhood Health and Disability Services Lauren J. Breen and Sherry Saggers Chapter 13. Health Care, Disability, and Living with Chronic Illness: Rehabilitation and Beyond Marie A. DiCowden Chapter 14. Acting for Advocacy: An Innovative Team Training Approach to Self-Advocacy Deborah Zuver, Robyn Dorton, Wilson Finks, and Kira Fisher Chapter 15. International Accessibility: Reflections on the Value of Disability Rights Law, Based on Travel to Athens and Rome Angela Kuemmel and Rebecca Kuemmel Chapter 16. Disability Policy—A Canadian Perspective: A Human Rights Approach to Providing Supports and Services Cheryl L. Crocker

145

155

167

181

201

215

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CONTENTS

Chapter 17. Advocacy in the 21st Century: An Integrated Model for Self-Advocates, Parents, and Professionals Steven M. Koch, Katy Beggs, Joy Bailey, and Jacqueline Remondet Wall Chapter 18. A Journey of Self through the Lives of Others: Historical Removal, Displacement, and Sanctioned Injustice Rae Kelly Chapter 19. States of Exceptionality: Provisional Disability, its Mitigation, and Citizenship Fiona Kumari Campbell Chapter 20. Disability in Kenya: A Situational Analysis Edward O. Manyibe, George I. Mamboleo, George C. T. Mugoya, and Charlene M. Kampfe

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245

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273 285

Chapter 21. Changing the System: “Strong Indigenous Women—We are the Voice” Robyn Burnett

299


305

Index

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Foreword

M


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FOREWORD

The program does this via strategies such as the annual Rosalynn Carter Symposium on Mental Health, which brings together diverse and multidisciplinary mental health care professionals, government agencies, consumer groups, and advocacy organizations (Palpant, Steimnitz, Bornemann, & Hawkins, 2006). One chapter in these volumes, authored by Paula Madrid and colleagues, addresses how depression and psychological distress can be created within the context of response (or lack thereof) to a national disaster. The editors tapped Madrid’s expertise based on the presentation of her work during the 22nd Annual Rosalynn Carter Symposium on Mental Health Policy, “Disaster Mental Health in the Wake of Hurricane Katrina,” in 2006. The editors first came together during the forum “Participatory Action Research and Indigenous Ways of Knowing: Women as Researchers and Partners in Community-Based Disability and Rehabilitation Research,” held in Honolulu, Hawai’i, in 2004. Over 30 Indigenous and non-Indigenous women from the United States and the Asia-Pacific region participated in this forum, including a member of the Carter Center Mental Health Task Force. Attendees were women with and without disabilities, researchers, grassroots community members, and community activists. The purpose of the forum was to engage a global community in articulating and redressing disparities in accessing health care and human services via culturally appropriate research methods and networking—networking that would support action outcomes taking place within local communities. The stories of some of the participants formed the underpinnings of these volumes. In a preliminary conversation about this forum in 2003, I suggested that understanding Indigenous issues and disability might have implications for world peace. One of the more interesting undercurrents that drove the forum in Hawai’i was the question of community and the various levels one’s community can encompass. Can community really exist at an international level? The Indigenous women at the forum certainly comprised one community. All participants, all Indigenous and non-Indigenous women, motivated and perhaps personally shaped by chronic illness and disability, comprised another level of community. It is important that we recognize our relationships to one another in these various levels of community, whether they are explicit or more subtle. These relationships are fluid but can be surprisingly strong. The Carter Center representative, Ethleen Iron Cloud-Two Dogs, concluded that support for such efforts “can potentially lead to greater workforce development, self-sustenance, and greater health and productivity for Indigenous women with disabilities, their families, and communities.” Surely that is a key component for world peace. Community is built of multiple layers of identity, interaction, and understanding. Where community begins with the world—with global networking and international collaborations—our work, whether it be understanding disability, supporting disability, or finding resources that address disability, continues in the towns, villages, streets, and suburbs where people with disabilities and their families reside. These volumes began with a few women who wanted to share lessons learned by reaching out to other countries and the world’s Indigenous people who had chronic conditions or disabilities—a relatively small number of people given the global population. Yet such a

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model of interaction can add to our understanding of cultural differences and cultural similarities, highlight the role such understanding can play in reducing health and economic disparities, increase international respect for one another, and set the stage for more effective local intervention. The publication of these volumes is a step forward as part of a movement that can lead to a better understanding of those who are different from us, a movement that can contribute to world peace.

REFERENCES Marshall, C. A., Burross, H. L., Gotto, G., McAllan, L., Vásquez Martínez, P., García Juárez, et al. (2004). The United States and Mexico: Creating partnerships in rehabilitation. Rehabilitation Psychology, 49(1), 14–20. Palpant, R. G., Steimnitz, R., Bornemann, T. H., & Hawkins, K. (2006). The Carter Center Mental Health Program: Addressing the public health crisis in the field of mental health through policy change and stigma reduction. Preventing Chronic Disease, 3(2):A62. Retrieved from www.cdc.gov/PCD/issues/2006/apr/ 05_0175.htm. Thomas Bornemann Director, Mental Health Program, The Carter Center


Preface Paul Leung

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REFERENCES Banks, M. E., & Marshall, C. (2004). Beyond the “triple-whammy”: Social class as a factor in discrimination against persons with disabilities. In J. L. Chin (Ed.), The psychology of prejudice and discrimination: Combating prejudice and all forms of discrimination. Volume 4: Disability, religion, physique, and other traits (pp. 95–110). Westport, CT: Praeger. Chen, I. (2006). Jeffrey Sachs stresses economics to reduce poverty. Brown Daily Herald. Reprinted in Poverty News Blog, retrieved from povertynewsblog.blogspot .com/2006/12/jeffrey-sachs-stresses-economics-to.html. Department of Health and Human Services. (2008). Poverty guidelines. Retrieved July 18, 2008, from aspe.hhs.gov/poverty/08poverty.shtml. Disler, P. (2008). Tertiary prevention: Rehabilitation in the management of chronic disease. Retrieved July 18, 2008 from www.pictureit.co.il/jerusalemconf/ Media/tuesdayhall1/peter%20disler.pps#12. Elwan, A. (1999). Poverty and disability, a survey of the literature. World Bank Social Protection Discussion Paper. Washington, DC: Work Bank. Leung, P., Marshall, C., & Wilson, K. (2007). Rehabilitation research from a multicultural perspective. In P. Leung, C. Flowers, W. Talley, & P. Sanderson (Eds.), Multicultural issues in rehabilitation and allied health (pp. 240–265). Linn Creek, MO: Aspen Professional Services. Marshall, C. (2006). SES factors influencing the definition of disability. Presented at the American Psychological Association Annual Convention, New Orleans, LA. National Council on Disability. (1993). Meeting the unique needs of minorities with disabilities: A report to the president and the Congress. Washington, DC: Author. Ottenbacher, K. J., Campbell, J., Kuo, Y., Deutsch, A., Ostir, G., & Granger, C. (2008). Racial and ethnic differences in postacute rehabilitation outcomes after stroke in the United States. Stroke, 39, 1514–1519. Sheeran, J. (2008). The silent tsunami. Economist, 13. Sum, A., Khatiwada, I., & Palma, S. (2006) The links between poverty and disability. Commonwealth Corporation Research and Evaluation Brief, 4(6), 1–4. United Nations. (2007). The millennium development goals report. Retrieved July 30, 2008, from www.un.org/millenniumgoals/docs/UNSD_MDG_Report_ 2007e.pdf. United Nations Convention on Rights of Persons with Disabilities. (2006). Retrieved July 18, 2008, from www.un.org/disabilities/default.asp?id=260. Vernon, A. (1997). Fighting two different battles: Unity is preferable to enmity. In L. Barton & M. Oliver (Eds.), Disability studies: Past present and future (pp. 255–262). Leeds: Disability Press. Retrieved August 11, 2008, from www .leeds.ac.uk/disability-studies/archiveuk/vernon/chapter17.pdf.

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Wilson, K. B., & Senices, J. (2005). Exploring the vocational rehabilitation acceptance rates of Hispanics and non-Hispanics in the United States. Journal of Counseling and Development, 83(1), 86–96. World Bank. (2002). Disability and poverty reduction strategies. Retrieved August 20, 2008, from web.worldbank.org/WBSITE/EXTERNAL/TOPICS/EXT SOCIALPROTECTION/EXTDISABILITY/0,,contentMDK:20193783~men uPK:419389~pagePK:148956~piPK:216618~theSitePK:282699,00.html. Yang, S. (2006). New study links higher income with lower disability rates. Retrieved December 5, 2007, from http://www.berkeley.edu/media/releases/2006/08/ 16_disability. Zakaria, F. (2008, May 12). The rise of the rest. Newsweek.

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CHAPTER 1

Evolution of Disability Policies and Practices in the United States: Implications for Global Implementation of Person-Centered Planning Carol J. Blessing, Thomas P. Golden, and Susanne M. Bruyère

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olicy and practices for people with disabilities in the United States have changed extensively over the past 35 years. This chapter traces this evolution of changes in American service system structures and the rise in client/ person-centered and empowerment-driven counseling. Person-centered planning was intended to be a key tool for achieving a needed paradigm shift in the design and delivery of services. The success of this approach over these years has been mixed, and it has not truly served as a conduit between disability and nondisability systems. We offer recommendations for how service delivery systems globally can use this approach to meet people’s basic needs and interests and promote full community participation and inclusion. The United States, like many other countries, is still struggling with how best to coordinate policies and programs to support people with disabilities in achieving employment, community living, and participation outcomes commensurate with their nondisabled peers (Golden, Zeitzer & Bruyère, in press). Person-centered planning is both a philosophy and a set of systematic methods that have been developed to move the U.S. system toward services that can deliver these outcomes. Philosophically, person-centered planning holds at its core a view of people as capable. The expression and expansion of an individual’s innate talent, interest, and skill lead to opportunities for purposeful associations and valued community membership roles. It is the assumption that the potential to make meaningful contributions and connections already exists within the person. Person-centered planning offers the tools and technology to intentionally look for and bring forth this potential.

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RESPONSES: PRACTICE, LEGAL, AND POLITICAL FRAMEWORKS

HISTORICAL ROOTS OF PERSON-CENTERED PLANNING The earliest disability policies of the 20th century were entrenched in a medical model primarily focused on the physical restoration of individuals who had suffered some sort of physical trauma or impairment as a result of war; in other words these policies focused on returning war veterans. These programs were expanded in the early 1920s to disabled civilians as well, creating the current U.S. state and federal partnership for vocational rehabilitation (VR). Public support for this model continued through the Great Depression and 1935 brought about permanent authority for the state and federal VR program. The remainder of the 1930s and 1940s focused on expansion of the VR model with establishment of a federal program for employing blind vendors at stands in lobbies of federal office buildings as well as an increasing focus on the physical rehabilitation of the U.S. population. That period of time also saw the addition of new federal laws expanding funding to support the construction of hospitals, public health centers, and health facilities focused on the rehabilitation of people with disabilities—further reinforcing the state and federal VR partnership by developing locally available VR resources. Despite increased allocation of resources and services for certain disability groups, individuals with mental illness and developmental disabilities were not faring as well in accessing services and resources to support their community participation and involvement. Expansion of large state-operated facilities housing these populations continued—perpetuating a segregated, institutionalized infrastructure of services and supports.

The Deinstutionalization Movement The focus on people with physical impairments continued through the 1950s, and in 1954 the Vocational Rehabilitation Act amendments authorized federal grants to expand programs that up to that point were primarily available to people with physical disabilities. The 1950s and 1960s brought increased emphasis on mental retardation, cognitive, and other mental impairments, as the deinstitutionalization movement brought an increased attention to issues and challenges faced by institutionalized populations in the United States. The deinstitutionalization movement was supported and accelerated on two primary fronts. First, there was growing enlightenment at the federal level regarding the plight of the disability experience, as President John F. Kennedy in the 1960s shared his own experiences with having a family member with a profound disability. The second was the growing public exposure to the atrocities experienced by persons with developmental disabilities who were living in state-operated facilities. The groundbreaking publication Christmas in Purgatory (Blatt, 1965) pictorially highlighted the deplorable living conditions of institutionalized populations. This was followed by a documentary in 1972 by Geraldo Rivera on the infamous Willowbrook State School on Staten Island and the appalling conditions experienced by the residents

EVOLUTION OF DISABILITY POLICIES AND PRACTICES IN THE UNITED STATES

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(Rothman & Rothman, 1984). These efforts raised awareness of the abusive treatment of individuals with disabilities to such heights that public outcry on the heels of the civil rights movement reinforced the demand for social reform. Unfortunately, the movement of people out of large institutions was the whole of the agenda, without much planning for or intention to conceptualize productive and meaningful community-based alternatives. The result was a proliferation of smaller but nevertheless segregated programs and services for people with disabilities.

Normalization, Independent Living, and Empowerment As important as the 1950s and 1960s were in advancing civil rights, desegregation, and deinstitutionalization for traditionally discriminated against populations in the United States, the 1970s and 1980s were even more crucial in advancing the theories of normalization, protection and advocacy, independent living, and empowerment for people with disabilities. The Rehabilitation Act of 1973 and Title V were put in place to correct the problem of discrimination against people with disabilities in the United States and significantly expanded the rights of people with disabilities to live, work, and spend leisure time in regular community settings (Fleisher & Zames, 2001). Human service delivery systems were called on by people with disabilities and their families to design and implement services for people that moved away from segregated programs into the mainstream of society. Deeply influential on the landscape of the service industry at this time was the emergence of Wolf Wolfensberger’s principle of normalization (1972). The principle of normalization, later reconceptualized by Wolfensberger as the principle of social role valorization (1998) challenged organizations to deconstruct common service practices that consistently and routinely segregated people with disabling conditions from real community life. According to the theory, segregated services perpetuate the stereotype that people with significant disabilities simply do not “fit into” the mainstream of society, thereby reinforcing the discrimination and stigma traditionally associated with being disabled. Instead, it is imperative that people with disabilities are seen in roles that are usually accepted, appreciated, and valued by the vast majority of typical community members. Acquisition of such valued social roles occurs, among other means, through the discovery and enhancement of a person’s competencies to such a degree that they will be able to successfully fulfill the expectations of a given social role. These theories supported the growth of the independent living and empowerment movement of the 1970s and 1980s. As a result, the subsequent amendments to the Rehabilitation Act focused on the creation of independent living centers, enhanced emphasis on peer counseling, and enhanced support for rehabilitation engineering, with appropriations and service definitions for special projects and demonstrations in supported employment. The advent of significant innovations in the late 1980s in supporting people toward community earning and learning experiences, such as supported employment, supported education, and supportive living, further called into question the use of congregated settings for the delivery of human services (O’Brien &

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O’Brien, 2002), especially with regard to the impact of these services on society in general and on people’s lives in particular. In a system that had been designed to identify and ameliorate what is perceived as being wrong with the person, the notion of identifying and building on personal competencies—or what is right with the person—posed a challenge indeed. Supporting these community-based innovations and community access was a tremendous infusion of federal resources to create protection and advocacy services for targeted disability populations to ensure their rights and privileges. Operated by state agencies, this national infrastructure supported not only the initial deinstitutionalization movement but also ongoing access to entitlements and other aspects of community living and participation including employment. This was further reinforced by the U.S. Supreme Court when they rejected the state of Georgia’s appeal to enforce deinstutionalization of individuals with disabilities. The Supreme Court’s ruling against Georgia affirmed the rights of individuals with disabilities to live in their communities (Olmstead v. L.C. [98-536], 527 US 581 [1999]).

Movement toward Integrated Systems and Demand-Driven Services The most recent amendments to the Rehabilitation Act (1992 and 1998) detailed the intent of Congress to ensure consumer choice in career opportunities with competitive employment as the preferred outcome. In 1998, the U.S. Congress passed the Workforce Investment Act (Public Law 105-220) as an attempt to consolidate various federally administered employment and job training programs, including the Rehabilitation Act amendments of 1998, into statewide partnerships for a workforce development system—attempting to align disability and mainstream systems. The integration of these diverse and separate programs into the respective titles of the Workforce Investment Act (U.S. Department of Labor, 2007) was primarily intended to consolidate, coordinate, and improve employment, training, literacy, and vocational rehabilitation programs in the United States. The Workforce Investment Act set out to create a one-stop system that was based on four principles: (a) universal access—making core workforce development services available to all population groups; (b) customer choice— allowing customers to select services based on their needs and promoting competition among centers; (c) service integration—workforce development services provided by local, state, and federal programs are all consolidated into one-stop centers; and (d) accountability—centers are evaluated on the basis of measurable outcomes with future funding linked to the results of services provided to customers (Imel, 1999). This effort seemed to finally create an inclusive and universal system, but service planning was still entrenched within a medical model that established certain prerequisites that guided progression through services received—not the person’s interest, preferences, and capacities. Another ever-present issue was simply the basic reconciliation of how the state and federal vocational rehabilitation system, originally outlined in the Rehabilitation Act of 1973 as the federal and state partnership to promote the employment outcomes


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of individuals with disabilities, would be integrated within the broader workforce development system without compromising what was perceived as specialized services and supports that were traditionally offered exclusively by the VR system. Momentum to extend the design of inclusive and integrated, demanddriven policies, procedures, and practices in the United States to promote full employment for Americans with disabilities continues to grow. This can be seen in the 1999 passage of the Ticket to Work and Work Incentives Improvement Act, which created a demand-driven service option to support the employment outcomes of individuals who receive disability entitlements in the United States. The Ticket to Work and Self-Sufficiency Program created by this landmark legislation is the first voluntary federal system that empowers the consumer with a ticket (voucher) to access the services and supports they feel they need to return to work from a national network of providers. As a result of this evolving policy environment, person-centered planning has become and remains a prevalent contemporary approach to planning the design and implementation of policy and delivery of services to people with disabilities. Such service approaches are intended to foster genuine opportunities for people with disabilities to make meaningful citizenship contributions and community connections.

PERSON-CENTERED PLANNING Person-centered planning began to appear in the service delivery system in 1979, originally as an offshoot of normalization. It was not until 1985 that the phrase “person-centered planning” became common (O’Brien & O’Brien, 2002). Although a dozen or so formal person-centered planning methods are available for use today, four methods or tools are most prevalent at national and international levels. Personal Futures Planning (Mount, 1990) combines knowledge from the field of systems planning and community development to the situation of people with disabilities (O’Brien & O’Brien, 1998). Making Action Plans (MAPS) (O’Brien, Forest, Snow, & Hasbury, 1989) was developed in an effort to help families and educational staff support students with disabilities in ordinary school classrooms. Planning Alternative Tomorrows with Hope (PATH) (Pearpoint, O’Brien, & Forest, 1993) addresses strategies for identifying complex problems by aligning, coordinating, and taking action toward a vision of a possible, positive future. Essential Lifestyles Planning (Smull & Burke-Harrison, 1992) addresses simple but important quality of life issues that allow for a deep awareness of the routines and rituals that bring comfort to a person. Understanding at this level sheds light on what matters to people and reflects their core of uniqueness, which in turn unfolds toward greater insight, greater awareness, and deeper appreciation. Regardless of the method chosen for person-centered planning, there are universal themes that resonate within and across all of the tools and serve as touchstones for planning. One such theme is the search for the capacity and potential of the person, rather than relating to the person through disability

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labels. Professional jargon is replaced with ordinary language to level the playing field of communication and invite others to join in the dialogue. Planners actively look for a person’s attributes, gifts, and talents in the context of typical community life; the voice of the person and of those who care best about the person become the focus of attention and deep listening. In a landmark article titled “What’s Worth Working Toward? Leadership for Better Quality Human Services” (1989) John O’Brien identified five closely linked service accomplishments that serve to strengthen the relationship between people with disabilities and other community members. Helping people move toward experiencing these five accomplishments in life—growing in relationships, contributing, making choices, experiencing the dignity of valued social roles, and sharing ordinary places and activities—is at the heart and soul of person-centered planning. Person-centered planning continues to grow in popularity in the disability service community. Once presumed to be a service specific to those with developmental disabilities, person-centered planning began making an appearance in the mental health community in the mid- to late 1990s and in 2003 was formally acknowledged as the second goal in the final report of the president’s New Freedom Commission on Mental Health, “Achieving the Promise: Transforming Mental Health Care in America” (2003). Although well intentioned in their desire to adopt person-centered planning into the service delivery system, organizations rarely have proven willing to make or capable of making the systemic shifts that are necessary to dismantle the bureaucratic infrastructure that upholds a traditional approach to providing services to people with disabilities, relying instead on an infusion of theory and training to equip providers as a panacea and alternative to constructing a platform for real change. Person-centered planning is becoming an intervention that must meet compliance rather than an innovation to meet with people. Consequently, the once promising practice has yet to realize its full potential and become more than an extension of existing disability services and programs, through which people might experience a kinder, gentler form of social isolation but which fail to move people any closer to assuming valued social roles outside of the disability arena. As long as the service structure controls the personcentered planning process, full participation as valued and contributing citizens will remain elusive.

Promising Person-Centered Practices Experience has shown that substantial changes for individuals with disabilities can result from carefully constructed and implemented person-centered planning approaches and practices (Amado & McBride, 2002). There is, however, often a disassociation between what organizations state is the mission for the work of the organization and the day-to day functioning of the organization (O’Brien & O’Brien, 2002). Current systems of accountability reinforce traditional systems of service delivery (Blessing, Tierney, Osher, AllegrettiFreeman, & Abrey, 2005), which more often than not lead to standardizing approaches to planning with people (such as generic staff training) in the


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name of being person-centered. Public services are driven by a political desire for measurable targets (Routledge, Sanderson, & Grig, 2002). Traditional organizations are often conflicted between the desire to promote practices that sustain the hallmarks of good person-centered planning, such as developing and implementing communities of practice, and the need to be responsible stewards of limited and finite resources via adherence to bureaucratic methodologies. Cultivating communities of practice requires a deep commitment to integrating the structures of the system with the dynamic process of engaging in community building, within and across the boundaries of the organizational system. Cultivating a system that supports good person-centered practice requires a reorganization of the traditional service delivery infrastructure across the whole system of performance at four different levels of action (O’Brien & Towell, 2003). 1. The first level of action is a focus on increasing individual opportunity for people with disabilities to exercise control over their lives and services. 2. The second level of action occurs at the service delivery level, through which capacity to personalize supports to people is built. 3. The third level for action happens locally, whereby the investment in social inclusion is realized through creative and flexible use of resources that lead people with disabilities into the mainstream of community life. 4. The fourth level places a focus on implementing policies at the national level. With the turn of the 21st century, initiatives designed to transform public policy relevant to people with disabilities have emerged nationally and internationally. The 2003 President’s New Freedom Commission on Mental Health called for transformation of public mental health systems and led to the convening of two national forums to examine and explore developing models to guide individual plans of care. Person-centered planning in each instance was identified as an emerging best practice (New Freedom Commission on Mental Health, 2003, 2005). In England in 2001 the government published a white paper called Valuing People, which called for significant changes in policy and practice of service delivery for people with developmental disabilities and identified a critical role for person-centered planning in making the necessary changes (Routledge et al., 2002). Person-centered planning was declared a law in the state of Michigan in 1996 and later amended to deepen the articulation of the expectations for individualized services and supports (Michigan Department of Mental Health, 2002). Successful person-centered planning occurs when systems develop communities of practice rather than assembling a collection of techniques to be applied to a situation. The Connecticut Department of Mental Health and Addiction Services has published a comprehensive document outlining person-centered practice guidelines (Tondora & Davidson, 2006) that places the primacy of decision making on people in recovery in all aspects of the service delivery process. The Western New York Care Coordination Program (WNY CCP)1 began a person-centered planning initiative in 2003 to transform public mental

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health services to improve the outcomes for people with mental illness by utilizing A Framework for Planning (Blessing & Ferrell, 2006) as a primary planning method to influence the change effort across three levels of the system and to promote recovery-oriented principles and practices. By 2007, statistically relevant impacts associated with the initiative were reflected in the data obtained from a sample cohort of 2,927 cases. Quality of life indicators showed reduction in trips to the emergency room; length of hospital stays and self-injurious behavior, arrests, and drug/alcohol abuse while simultaneously showing an increase in improved housing/living arrangements and a marked increase (56 percent) in the acquisition of gainful activity, such as employment (Snell, 2008). Another multilevel system-impact initiative in New York State was launched in 2003 by Cornell University’s Employment and Disability Institute under sponsorship from the New York State Developmental Disabilities Planning Council in partnership with the New York State Department of Correctional Services (NYS DOCS) to integrate person-centered planning practices into the assessment, treatment, and discharge planning processes for inmates with developmental disabilities. The Inmate to Citizen research demonstration project2 has successfully created a foundation for system change within three distinct special needs units across the state prison system. Tangible outcomes have been documented, including a positive shift in staff attitude toward the enhanced potential for successful community re-entry for inmates (Blessing, Golden, & Ruiz-Quintanilla, 2005). Formal policies and procedures governing the programs and services provided to inmates with disabilities in the Special Needs Unit have been revised to incorporate person-centered outcomes, quality assessment processes, and protocol for conducting personcentered assessment and treatment planning (NYS DOCS, 2007), resulting in more personalized strength-based treatment services and the expansion of program options. On a broader policy front, the U.S. government has begun incorporating person-centeredness and empowerment principles into federal legislation and resulting federal regulations. As mentioned earlier, the Ticket to Work and Work Incentives Improvement Act incorporated specific elements in the law that promoted the personal empowerment and choice of people with disabilities in directing their lives through investment in social inclusion. The act established a Ticket to Work and Self-Sufficiency Program, which provided eligible people with disabilities who received Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) a ticket to work that they could in turn deposit with an employment network (service provider) of their choosing to assist them in securing the vocational rehabilitation, employment services, and/or other supports they felt they needed to gain substantial employment. This effort has created a paradigm shift starting at the federal level, moving the traditional continuum-based employment preparation market to a demand-driven system where the consumer’s interests, preferences, and support needs drive the actual delivery of personalized services and supports leading to preferred inclusive outcomes. The act also promulgated the development of work incentives outreach services through a national network of benefits and


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work incentives planning and assistance programs to SSI or SSDI recipients in making informed decisions and choices about how earnings and employment would impact their federal and state entitlements and benefits. These services ensure that individuals have access to the critical information they need to make decisions regarding their lives and ensure their financial wellbeing and economic self-sufficiency. Finally, the act also established the Ticket to Work and Work Incentives Advisory Panel, a bipartisan group comprised of 12 federally appointed individuals. The panel was charged with providing guidance on the successful implementation of services and supports outlined in the law, and composition of the panel required inclusion of individuals with disabilities, their advocates and representatives, and SSI and/or SSDI recipients, ensuring that they had a strong voice in the implementation of the law ensuring their rights.

IMPLICATIONS FOR EMPLOYMENT AND DISABILITY POLICY AND PRACTICE GLOBALLY Growth and promotion of the principles of person-centered planning in the United States has evolved out of a genuine concern about the rights of people with disabilities and the desire to improve their employment outcomes. Americans with disabilities still experience significant disparities in their ability to access employment. In 2007, the employment rate of working people with disabilities was 36.9 percent, compared with 79.7 percent for those without disabilities. The percentage of working-age people with disabilities in the United States working full-time/full-year was 21.2 percent, compared to 56.7 percent for those without disabilities (Rehabilitation Research and Training Center, 2008).3 Similarly, people in other parts of the world experience disparities in their ability to access training, employment and full community participation. “According to the U.N., about 10% of the world’s population is disabled at one time. However, this 10% underestimates the impact of disability” (Mont, 2004, p. 4). In terms of employment participation of people with disabilities internationally, it is difficult to find statistics that make comparisons possible. “In general, persons with disabilities in the labor market tend to have lower education than others. They are also more likely to be in part-time jobs. Unemployment rates vary between types of disability, being highest among those with mental illness” (O’Reilly, 2003, p. 38).

Evolution of Disability Rights Protections Globally Changes similar to those in American disability policy and the values and philosophical perspectives with which rehabilitation and human service have been delivered have been occurring simultaneously in other parts of the world. Metts (2000) described several key actions by international bodies that have supported these changes, as follows: The human rights argument for equalizing opportunities for people with disabilities was initially expressed by the United Nations in its 1971 Declaration

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RESPONSES: PRACTICE, LEGAL, AND POLITICAL FRAMEWORKS of the Rights of Mental Retarded Persons and its 1975 Declaration of the Rights of Disabled Persons. The philosophy was then fully articulated in the world Program of Action concerning Disabled Persons (WPA), adopted by the General Assembly in 1982. The Standard Rules on the Equalization of Opportunities for People with Disabilities (Standard Rules), unanimously adopted in 1994, were designed to add a framework for disability policy implementation by Member States. (p. viii)

More recently, an additional statement of support for the rights of people with disabilities at the global level has been made with adoption of the Convention on the Rights of Persons with Disabilities and its Optional Protocol4 by the United Nations General Assembly on December 13, 2006. The convention was opened for signature on March 30, 2007, and 81 member states and the European Community signed the convention, the highest number of signatures of any human rights convention on its opening day, signaling a global movement toward the recognition of the rights of persons with disabilities. The tenets of person-centered planning are aligned closely with the framework of the UN convention, whose articles include the principles of equality and nondiscrimination (Article 5), equal recognition before the law (Article 12), protecting the integrity of the person (Article 17), living independently and being included in the community (Article 19), and freedom of expression and opinion and access to information (Article 21). Thus, the timing is right for a discussion of how to make these principles integral to the delivery of employment, training/education, and community living service delivery for persons with disabilities globally. Fundamental to the rights of people with disabilities among these international covenants and standards is the right to development, described by O’Reilly (2003), drawing from 1986 UN Declaration on the Right to Development, as “an inalienable human right by virtue of which every human person and all peoples are entitled to participant in, contribute to and enjoy economic, social, cultural and political development, in which all human rights and fundamental freedoms can be fully realized” (p. 1). To date, passive measures (income transfer) have been the predominant approach internationally where employment policies for people with disabilities who have work limitations due to a disability have been concerned; they have represented a greater proportion of public resources than active labor market measures (O’Reilly, 2003). However, changes are occurring. Development (economic and employment) is increasingly being seen a part of the intervention strategy to eradicate poverty and increase economic participation for people with disabilities at the global level. This fundamental concern can be seen in the strategies and services used to address employment of people with disabilities at the global level.

Service Structures for People with Disabilities Among the employment options discussed and promoted for people with disabilities internationally are open/competitive employment, supported employment, sheltered employment, and social or micro-enterprise/self-employment.


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In the United States, integrated employment opportunities for people with disabilities has increasingly been the focus, consistent with the person-centered planning tenet of maximizing the individual’s potential in full community participation. Supported employment programs have been designed to assist persons with the most severe disabilities to become integrated into mainstream employment. These services may consist of ongoing support services that enable people with disabilities to learn and perform their jobs (Mont, 2004). Many countries are similarly concerned about increasing levels of employment among people with disabilities in mainstream competitive labor market participation. These trends represent an interest in the rights of people with disabilities and also the interests of policy makers in increasing the economic well-being of people with disabilities, thereby minimizing social insurance costs (O’Reilly, 2003). In many developing countries, employment opportunities are more prevalent in the informal rather than the formal economy. The service delivery systems in some of these countries may include sheltered work as one option for employment. Sheltered work provides employment in segregated settings and therefore is not consistent with the principles of maximizing community participation. Though these approaches are likely to be still seen as part of continuumbased services in many parts of the world, it is imperative that the principles of person-centered planning permeate the delivery of these services as well. One of the approaches to increasing economic self-sufficiency, especially in developing countries, has been the use of micro-enterprises and selfemployment for people with disabilities. This approach is consistent with the way much of the general population in these countries may find employment, and that is in the informal economy. “Like the rest of the population in developing countries, most people with disabilities turn to self-employment because of a lack of opportunities in the job market” (Handicap International, 2006, p. 17). In many ways, this approach is consistent with the tenets of person-centered planning; it is focused on matching the interests and skills of the individual with available economic opportunities that are responsive to the distinct opportunities arising in a given community’s marketplace.

FUTURE IMPLICATIONS Integration of person-centered planning tenets into international disability public policy and practices requires a coordinated effort across a number of public policies and stakeholders, as well as an examination of new strategies to assess the effectiveness of these efforts. This approach must include development of a coordinated approach to policy development and implementation and more effective measurement of comparative public policy effectiveness, as well as measures of participation, inclusion, and effective outcomes for people with disabilities.

Coordinated Public Policy Development and Implementation Almost 25 years ago, the U.S. National Council on Disability (then called the National Council on the Handicapped), issued a National Policy for People

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with Disabilities, which included a statement about the importance of international cooperation to promote the interests of people with disabilities (National Council on the Handicapped, 1984). The document urged that “Government and the private sector should cooperate to support and learn from the efforts of the world’s more than 500 million persons with disabilities as they strive to achieve maximum quality of life potential and equitable mainstream social participation.”5 Successful planning to promote the rights of people with disabilities and make long-term and significant changes to the premises, on which these services are provided, necessitates an examination and implementation of both public policy and private sector/enterprise practices. Two years after the above-mentioned report, the National Council on Disability (1986) issued another report,6 encouraging an assessment of the complexities, inconsistencies, and fragmentation in the various U.S. federal laws and programs that affect Americans with disabilities. The council has focused its attention on 10 major topic areas of U.S. federal programs affecting people with disabilities, including equal opportunity laws; employment; disincentives to work under Social Security laws; prevention of disabilities; transportation; housing; community-based services for independent living; educating children with disabilities; personal assistance, including attendant services, readers, and interpreters; and coordination across all of these segments. The council believed that mechanisms should be in place throughout the service delivery system that consistently and purposefully attempt to improve the linkages among the policy makers and programs that serve people with disabilities. The council report advocated frequent and purposeful interaction at the national level of all parties involved in policy decisions that affect services to people with disabilities. This need is as true today as it was 25 years ago. As we move toward a more international view of disability, this holistic vantage point of policy scrutiny will be imperative. In addition, integration of the perspectives of disability advocacy organizations as well as the private sector enterprise will be imperative. Employment public policy can significantly impact the incentives to individuals to leave social insurance safety nets for work. It can also affect the policies and practices of employers to hire and retain people with disabilities. Engaging these important partners in the public policy analysis process will be imperative.

Effective Measures of Comparative Public Policy Effectiveness The challenge of effectively measuring the impact of public policies in place to support the interests of people with disabilities is of global interest. Differences in definitions of disability, ways of measuring employment and service use, as well as satisfaction with services differ widely from country to country. In addition, many countries are not keeping much if any such data on this population as of yet (International Labor Organisation, 2007). Yet there is strong international disability policy interest in establishing and monitoring the impact of legislation. Collaborative global efforts to move toward this goal are needed. In the rehabilitation field, administrators and policy makers in the United States have long struggled with the dilemma of differing definitions of


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disability and the many different indices of successful outcomes in the rehabilitation process. One tool increasingly being discussed as a possible framework to develop a common nomenclature across rehabilitation service delivery systems is the International Classification of Functioning, Disability and Health (ICF) (Iezzoni & Greenberg, 2003; Ustun, Chatterji, Kostansjek, & Bickenbach, 2003). A major aim of the ICF, inherited from an earlier version, the International Classification of Impairments, Disabilities and Handicaps— Beta 2 (World Health Organization, 2001), is to provide a common language to describe the components of health and health-related conditions across disciplines and between countries (Gray & Hendershot, 2000). The ICF is about human functioning, human capital, individual capacity, and the ability to participate in society. In addition, the ICF includes not only functional assessments but also environmental and contextual factors (World Health Organization, 2001). The ability of the ICF to move beyond simply classifying and labeling disability to identifying functional capacity on which to make societal contributions sets it apart from traditional medical approaches to disability classification. At this level the ICF has the potential for alignment with the basic and core tenets of person-centered values and practices although this is an item of ongoing debate.

CONCLUSION The tenets of person-centered planning are timely and appropriate for global implementation. Although the challenges in attaining this goal are significant, the international disability public policy climate and the momentum of the disability movement serve as critical pillars on which we can currently build. A primary challenge in furthering the legitimate practice of personcentered planning is the need to deconstruct the medical/deficit-based paradigm from which the continuum-based service delivery system has historically operated in favor of a model that manifests a strengths-based and functional capacity paradigm focused on supports as needed. This will require the realignment of current funding structures and dismantling of organizational designs and accountability systems that perpetuate the cycle of disability. A secondary challenge lies in the willingness and ability of communities to reconceptualize the role service delivery systems should play in the betterment of the society as a whole, serving not to segregate people with disabilities from the mainstream but to forge respectable and responsible associations and connection within communities. People with disabilities and their families must consistently be provided opportunity to express their personal priorities. Further, they must be provided information and opportunities from which to make educated decisions about critical life issues and given the authority to reject standardized service delivery structures, even those that may be labeled person-centered. The continued evolution of the current disability paradigm is contingent on individuals with disabilities, their supporters, and policy makers chipping away at these challenges to create a policy environment that supports the person-centeredness of the human experience and recognition of the inherent capacities that all human beings share.

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NOTES 1. For further information, see the Western New York Care Coordination Project Web site at www.carecoordination.org. 2. For further information, see the Cornell University School of Industrial and Labor Relations Employment and Disability Institute Web site at www.ilr.cornell .edu/edi/p-inmate.cfm. 3. Calculations conducted using the 2007 American Community Survey by William Erickson, Cornell University; for further information, see www.disability statistics.org. 4. For further information see the UN Enable Web site at www.un.org/ disabilities. 5. For further information, see the National Council on Disability Web site at www.ncd.gov/newsroom/publications/1984/nationalpolicy_1984.htm. 6. For further information, see the National Council on Disability Web site at www.ncd.gov/newsroom/publications/1986/toward.htm.

REFERENCES Amado, A., & McBride, M. (2002). Realizing individual, organizational, and systems change: Lessons learned in 15 years of training about person-centered planning and principles. In S. Holburn & P. Vietze (Eds.), Person-centered planning. Research, practice and future directions. Baltimore, MD: Brookes. Blatt, B. (1965). Christmas in purgatory. Syracuse, NY: Center on Human Policy, Syracuse University. Blessing, C., & Ferrell, C. (2006). A framework for planning. Rochester: Landmark Press. Blessing, C., Golden, T., & Ruiz-Quintanilla, A. (2005). Inmate to citizen. Tangible results and outcomes to date. Using person-centered practices to facilitate the successful re-entry of inmates with special needs into community membership roles. Ithaca, NY: Cornell University Employment and Disability Institute. Blessing, C., Tierney, M., Osher, D., Allegretti-Freeman, J., & Abrey, B. (2005). Learning from other communities. Washington, DC: Substance Abuse and Mental Health Services Administration. Fleisher, D. Z., & Zames, F. (2001). The disability rights movement: From charity to confrontation. Philadelphia, PA: Temple University Press. Golden, T. P., Zeitzer, I., & Bruyère, S. M. (In press). New approaches to disability in social policy: The case of the US. In T. Guloglu (Ed.), Social policy in a changing world. Munster: MV Wissenschaft. Gray, D., & Hendershot, G. (2000). The ICF: Developments for a new era of outcomes research. Archives of Physical Medicine and Rehabilitation, 8(Suppl 2), S10–S14. Handicap International. (2006). Good practices for the economic inclusion of people with disabilities in developing countries. Surrey: Author. Iezzoni, L., & Greenberg, M. (2003). Capturing and classifying functional status information in administrative databases. Health Care Financing Review, 24(3), 61–76. Imel, S. (1999). One stop career centers. ERIC Digest no. 208. Columbus, OH: ERIC Clearinghouse on Adult, Career, and Vocational Education. International Labor Organisation. (2007). The employment situation of people with disabilities: Towards improved statistical information. Geneva: Author. Metts, R. L. (2000). Disability issues, trends and recommendations for the World Bank. Washington, DC: World Bank, Disability and Development Team.


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Michigan Department of Mental Health. (2002). Person-centered planning revised policy and practice guideline. Provider manual section G. Retrieved May 5, 2008, from www.michigan.gov/mdch/0,1607,7-132-2945_5100-87572--,00 .html#About. Mont, D. (2004). Disability employment policy. Washington, DC: World Bank, Disability and Development Team. Mount, B. (1990). Making futures happen: A manual for facilitators of personal futures planning. St Paul, MN: Metropolitan Council’s DD Case Management Project. National Council on Disability. (1986). Toward independence: An assessment of federal laws and programs affecting persons with disabilities—with legislative recommendations. A report to the president and to the Congress of the US. Washington, DC: Author. National Council on the Handicapped. (1984). National policy for persons with disabilities. Washington, DC: Author. New Freedom Commission on Mental Health. (2003). Achieving the promise: Transforming mental health care in America. Final report. Rockville, MD: DDHS pub no. SMA-03-3832. New Freedom Commission on Mental Health (2005). Subcommittee on Evidence-Based Practices: Background Paper. Rockville, MD: DHHS pub. no. SMA-05-4007. New York State Department of Correctional Services. (2007). Special Needs Unit policy and procedure manual. Albany, NY: Author. O’Brien, J. (1989). What’s worth working for? Leadership for better quality human services. In V. Bradley & H. Bersani (eds.), (1989). Improving the quality of services for people with developmental disabilities: It’s everybody’s business. Baltimore: Paul Brookes. O’Brien, J., Forest, M., Snow, J., & Hasbury, D. (1989). Action for inclusion. Toronto, Canada: Frontier College Press. O’Brien, J., & O’Brien, C. (1998). A little book about person centered planning. Ontario: Inclusion Press. O’Brien, J., & O’Brien, C. (Eds.). (2002). Implementing person-centered planning: Voices of experience. Toronto: Inclusion Press. O’Brien, J., & Towell, D. (2003). Person-centered planning in its strategic context. Syracuse, NY: Center for Human Policy, Syracuse University. O’Reilly, A. (2003). The right to decent work: Working paper. Geneva: International Labor Organisation. Pearpoint, J., O’Brien, J., & Forest, M. (1992). PATH: Planning Alternative Tomorrows with Hope. Toronto: Inclusion Press. Rehabilitation Research and Training Center on Disability Demographics and Statistics. (2008). (2007) Disability status report. Ithaca, NY: Cornell University Employment and Disability Institute. Rothman, D. J., & Rothman, S. M. (1984). The Willowbrook wars: A decade of struggle for social justice. New York: Harper & Row. Routledge, M., Sanderson, H., & Grig, R. (2002). Planning with people: The development of guidance on person-centered planning. In J. O’Brien & C. Lyle O’Brien (Eds.), Implementing person-centered planning: Voices of experience. Toronto: Inclusion Press. Smull, M. & Burke-Harrison, S. (1992). Supporting people with severe reputations in the community. Alexandria, VA: National Association of State Mental Retardation Program Directors. Snell, S. (2008). Physical-Mental Health Integration: Challenge and Opportunity. Presentation to the New York State Association for Rural Health, Corning, New York, September 9, 2008.

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Tondora, J., & Davidson, L. (2006). Practice guidelines for recovery-oriented behavioral health care. Hartford: Connecticut Department of Mental Health and Addiction Services. Retrieved May 5, 2008, from www.ct.gov/dmhas/site/default.asp. U.S. Department of Labor. (2007). Workforce Investment Act of 1998. Retrieved October 8, 2007, from www.doleta.gov/usworkforce/wia/wialaw.txt. Ustun, T., Chatterji, S., Kostansjek, N., & Bickenbach, J. (2003). WHO’s ICF and functional status information in health records. Health Care Financing Review, 24(3), 77–88. Wolfensberger, W. (1972). The principle of normalization in human services. Toronto: National Institute on Mental Retardation. Wolfensberger, W. (1998). A brief introduction to social role valorization: A high-order concept for addressing the plight of societally devalued people, and for structuring human services. Syracuse, NY: Training Institute for Human Service Planning, Leadership and Change Agentry, Syracuse University. World Health Organization. (2001). International classification of functioning, disability and health: ICF. Geneva: Author.

CHAPTER 2

Global Networking, Social Justice, and Implications for Chronic Illness and Disability Elizabeth Kendall and Catherine A. Marshall

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rrespective of their country of origin, neither people with disabilities nor Indigenous people are likely to have full and equal access to health and human services. Women also often have unenviable social positions that lack power and respect. Consequently, Indigenous women with disabilities can confront a triple disadvantage. Across the world, access and equity for Indigenous people with disabilities are hindered by the failure and reluctance of the dominant culture to neither understand the vast differences between European and Indigenous cultures nor value the latter. There remains a prevalence of popularized stereotypes of Indigenous people that hinder the delivery of appropriate services. Research and international experience has indicated that the difficulties and disparities faced by Indigenous women with chronic illnesses or disabilities may be a global phenomenon; as such, it is possible that the development of solutions may best be obtained through global cooperation. Specifically, in our experience, the proportion of Indigenous people with disabilities in Pacific Rim countries is so low that their needs are often overlooked. While we have written about the challenges that can be encountered in brokering a global collaboration (Marshall, Kendall, Catalano, & Barnett, 2008), we continue to believe that global partnerships offer a way of increasing the voice of Indigenous people with disabilities, especially women who are particularly disadvantaged. In this chapter, we argue that researchers and practitioners have a responsibility to ensure that all people have equal power to redress the causes of health and human services disparities. We describe a global forum that brought together Indigenous and non-Indigenous women with disabilities

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and participatory researchers from around the world. We reflect on the reasons why we—a group of Indigenous and non-Indigenous women—came together to tell stories in an international arena, producing a message for the world regarding the concerns of Indigenous women with disabilities.

THE PROBLEM OF SMALL NUMBERS Too often, we typically recognize only the majority, the greater number, or the most of anything. As such, the relatively small proportion of Indigenous people with disabilities means that although their unique needs are important, populations with greater numbers will gain more attention. For instance, the beginning of this century saw the population of American Indians, including Alaskan Natives and Aleut, increase from 2 million to 2.3 million over a five-year period (Sanderson, 2001). However, this number still only represents about 1 percent of the total U.S. population. The Aboriginal and Torres Strait Islander population is only 2.1 percent of the total population in Australia (Australian Bureau of Statistics, 2001). Statistics reveal similarly low percentages of Indigenous people in Canada (i.e., 2.2 percent; Department of Indian Affairs and Northern Development, 1998). Even in Mexico, where a high proportion of Indigenous people are found, the official percentage has been estimated to be only 6.5 percent (Marshall & García Juárez, 2002). Within these Indigenous groups, people with a disability represent an even smaller proportion of the total population, even though disability is extremely prevalent among Indigenous people—their numbers are simply too few to be adequately acknowledged and addressed by majority culture service providers and policy makers. Further, the influx of postcolonial attitudes and values into some Indigenous cultures has meant that women now have unenviable positions that lack power and respect (Marshall & García Juárez, 2002; Marshall, Santiago González, García Juárez, & Bruyère, 2003). Many Indigenous women with chronic illnesses or disabilities therefore confront a triple disadvantage (Banks & Marshall, 2004). As researchers devoted to equitable rehabilitation and ensuring access of all citizens to publicly available health and human services, we were concerned about the lack of focused and sustained attention to the experience of Indigenous people with disabilities. Although the number of people with chronic illnesses and disabilities in Indigenous populations may be small relative to non-Indigenous numbers, the incidence is too often excessive in proportion to the population. We must devote attention to documenting the issues faced by relatively small populations that demonstrate high levels of need for improved services. Social justice demands that we look beyond economies of scale in research and service provision instead of only researching and servicing those populations where there are sufficient numbers or sampling convenience. When considered globally, the numbers of Indigenous women with disabilities are greatly enhanced, thus demanding greater respect and attention. We acknowledge that it is important to address needs at the level of individual

GLOBAL NETWORKING, SOCIAL JUSTICE

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communities due to the diversity across tribes, regions and countries (Marshall, Johnson, Martin, Saravanabhavan, & Bradford, 1992). This local focus ensures relevance and community empowerment and avoids the problem of overgeneralization of results. Thus, while not attempting to state that Indigenous people have the same cultures, values, or needs throughout the world, we recognize that similarities do exist, due in part to the oppression Indigenous people across the world have encountered by colonizing majority cultures (Stone, 2002). Indeed, we are not the first to identify commonalities among Indigenous peoples. Over a decade ago, Young (1994) commented that the health experience of the Native Americans of North America was comparable to that of Aboriginal and Indigenous populations from other countries.

A GLOBAL FORUM The presentations were deeply moving as there was personal testimony about the struggles of Indigenous women and the issues of disability in the context of historical oppression, cultural identity and particularly the need for Indigenous communities to continue the work of decolonization. (Ethleen Iron CloudTwo Dogs, forum participant)

Challenges for Indigenous people in terms of health disparities, especially women with disabilities, often seem insurmountable. However, by joining with other Indigenous advocates and health researchers, solutions may be more likely to emerge. Thus, a global collaboration of Indigenous women with chronic illness and disability was seen as having significant potential to address their specific needs, building on the capabilities of women to implement local solutions to social justice and health issues. Consequently, a global forum, Participatory Action Research and Indigenous Ways of Knowing: Women as Researchers and Partners in Community-Based Disability and Rehabilitation Research, was held in Honolulu, Hawai’i, on July 25–27, 2004—coinciding with the closing year of the UN International Decade of the World’s Indigenous People. The global forum was based on three premises: (a) the voices of all Indigenous women with disabilities must be heard, (b) women have a need to come together in a unified forum, and (c) women, both as community participants and as participatory researchers, can take a lead in designing community solutions that address disparities of access to health and human services. According to Smith (1999), the central goal of any work involving Indigenous people should be self-determination—simultaneously engaging the processes of “decolonization,” transformation, healing, and mobilization. Such work should have a focus on healing and survival, for instance, rather than simply describing problems. Indeed, the forum was dominated by stories of healing and survival. The forum focused on the use of storytelling to show how participatory research can move beyond rhetoric to become emancipatory for those involved, including researchers. The approach of the forum embraced participatory voice (Clapton & Kendall, 2002).

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Over 30 Indigenous and non-Indigenous women from the United States and the Asia-Pacific region participated in the forum (see Foreword). Each woman who attended the forum arrived with her own set of values, ethos, personal tragedies, and successes. Importantly, each came from a place and a community with which she strongly identified—an important issue when one is contemplating the context of participatory research and to action steps which follow. The Indigenous women who participated in this forum do not exist in islands of exile or exclusion. They live, breathe, work, and interact in communities within towns, states, and countries. Yet as confirmed in the work of the forum, community is more than the area in which participants were born or reared. Community can be as broad as the world—made possible through global networking and international collaborations, such as those developed in the forum. Nevertheless, the goal of these partnerships was ultimately to promote change as needed, and locally, where forum participants lived. A second goal was to influence the manner in which researchers and practitioners around the world approach the homes and lives of Indigenous people and their communities (Caldwell et al., 2005; Cochran et al., 2008).

CHALLENGES TO GLOBAL NETWORKING Across the world, it appears difficult for majority culture disability advocates and policy makers to look past their own cultural lens, to understand and respect the practical realities of the different values among Indigenous people. As Somerville and Perkins (2003) identified, the collaborative research environment will be inherently saturated by concepts of culture and power. The only way to negotiate such difficult terrain is to do so in a fully conscious and honest way. Education on Indigenous issues might be informative, but it is not likely to stimulate overall policy changes and program implementation, particularly in the area of disability and rehabilitation where services remain focused on the individual. For instance, service providers have struggled to understand the fact that Indigenous people maintain integral ties and perhaps living arrangements with their relative who has a disability (Marshall, 1995; Marshall & Cerveny, 1994); these integral ties must be acknowledged and respected in rehabilitation service delivery. Service providers have also struggled to understand Indigenous linkages to the land and place or conceptualizations of illness that relate to the well-being of the entire community (Kendall & Marshall, 2004). There is ample evidence of services that have been developed without respect for these values and are therefore underutilized by Indigenous people. Indeed, across colonized countries, Indigenous people with disabilities typically experience discrimination and inappropriate services created by (a) the failure and reluctance of the dominant culture to understand the vast differences between European and Indigenous cultures and (b) the prevalence of popularized stereotypes of Indigenous people (Kendall & Marshall, 2004). By broadening our understanding of Indigenous values and cultural contexts, health and human service providers can view cultural differences as


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being reasonable and understandable rather than labeling any differences as pathological or deficient (Marshall, Leung, Johnson, & Busby, 2003). As an example, if a mother of an adult child with a disability states that she expects the child will remain living at home for the rest of her or his life, professionals would most likely consider her to be unreasonable and noncompliant with the independent living goals of the rehabilitation process. However, her position becomes understandable and reasonable if it is known that she is Eastern Band of Cherokee from North Carolina (Marshall & Cerveny, 1994; Sanchez, Plawecki, & Plawecki, 1996), Mixe from Oaxaca, Mexico (Marshall, Burross, García Juárez, & Santiago González, 2000; Smart & Smart, 1991), or Murra Warri from western New South Wales, Australia (Kendall & Marshall, 2004). As in many other cultural groups that hold the collective as the basis of their society, this mother would expect her devotion to the group and the family to be respected by professionals. An American woman who migrated to Australia after her marriage to an Aboriginal man wrote, “I had learned that I was part of a whole. . . . I could no longer live for myself, not even just for [my husband], but for a community. . . . The group comes first” (Williams, 2001, p. 164). In promoting global networking, practitioners and researchers need to better understand such tensions and cultural factors that influence the relationships between researchers and community-based research partners (Caldwell et al., 2005). Community partners will bring different values and perhaps interests to the partnership than researchers and practitioners who have usually been trained in the traditions of their dominant culture. The importance of engaging in reflective cross-cultural communication is highlighted by the fact that we all, to some degree, view the world through the framework of our own culture; this reality also affects our science (Du Bois, 1983; Gergen, Gulerce, Lock, & Misra, 1996; Hughes, Seidman, & Williams, 1993) and our practice. Our cultural bias gives us distinct and valuable perspectives and insights, but at the same time obscures our ability to perceive and comprehend in terms other than our own. We therefore need to examine how the research processes and practices of service providers who work with Indigenous people with chronic illnesses or disabilities must be, and indeed are, influenced by their culture. Awareness of this influence and adoption of appropriate research procedures enhances the validity of our research (Marshall, Leung, et al., 2003) and increases the likelihood that the research can better demonstrate its value and usefulness to the community. Similarly, we need to value the contributions and insights of community partners in research. Research designs and methods that mesh with cultural traditions will hold greater value in a given Indigenous community (Marshall, Sanders, & Hill, 2001). As only one example, we need to understand and document how Indigenous cultural traditions, such as oral communication, can influence our choice of research methods and allow for authentic partnerships in participatory research (Davis, Erickson, Johnson, Marshall, Running Wolf, & Santiago, 2002). True collaborations have no boundaries. Researchers and practitioners can learn much from the experiences of the world’s Indigenous peoples and

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researchers in other countries as they use research methods and practice that incorporate culture as an essential context in research. These types of collaborations and participatory methods can only positively affect professional practice, as Usdane (1993) observed: Boundaries persist, in no small measure, because public funding has a hard time keeping up with the elastic needs of people; . . . It is still almost universally the case that funding sources tend not to reflect the wide variety of needs within the system. Instead, they maintain extremely specific eligibility requirements. . . . Such boundaries can easily lead to decisions that people with disabilities are ineligible for this or that service, creating widespread potential for people to fall through cracks and receive services that are poorly suited to their needs or worse, no services at all. (p. 31)

CONCLUSION I think about our meeting [the forum] often and reflect on the power of women and the things we still need to do, but I know we are on the right path. (Prairie Flower Reuben, forum participant)

As a result of the forum, the following position statement was developed by the participants, both Indigenous and non-Indigenous: This is a call to all Indigenous women to unify the global voices of Indigenous women with disabilities to develop a network, discourse, understanding, and inclusion in promoting our identity, uniqueness, and socio-economic development in order to influence our communities, governments, policy makers, service providers, educators, and researchers to honor and recognize the culturally distinctive needs, beliefs, values, worldviews, and eradicate disparities between Indigenous and non-Indigenous peoples to ensure fulfillment of human rights of Indigenous women with disabilities.

The forum brought together women whose cultures and peoples have experienced similar colonization processes. For the participants, the forum was an outgrowth of networks they had formed throughout previous years as they had worked together in different ways and in different configurations, all with the goal of strengthening the fight against disparities. The idea of an international community excited the participants and inspired them to continue fighting through global collaboration. During the planning of the forum, we received requests to participate from Indigenous and nonIndigenous women, with and without disabilities, from other countries such as Sweden, Norway, Fiji, Malawi, Pakistan, Nigeria, and Canada. These requests indicated support for an international community that can, we hope, further develop. In most instances, lack of funding prevented participation at the forum. Sadly, however, participation was prevented for some women by the same mechanisms that contribute to their marginalization in the first place. For instance, Indigenous women with disabilities from Mexico, who had participated in the development of the network, were not able to participate in


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the forum because they were denied visas to enter the United States; an Indigenous psychologist was among those whose visa was denied. Institutional barriers such as this send a clear message of continued colonization, lack of value, and inequity. They also reinforce the fact that capacity to participate in international solutions is often restricted to Western non-Indigenous academic women who have access to the funding resources of their institutions, or to Indigenous women who are sophisticated enough to have attracted powerful or well-financed sponsors. The portability of the voices and the presence of low-income grassroots women must be addressed. Mexico’s former Minister of Foreign Affairs Jorge Castañeda (1995), stated that the Chiapas uprising of 1994 “highlighted the enduring marginalization, poverty, and discrimination suffered by . . . Indigenous peoples” (pp. 84–85). Few Americans would argue that any lessons could be learned from Mexico, and even fewer would argue that we could learn from Mexico’s Indigenous peoples with disabilities—and yet we have (Marshall et al., 2000). The motivation for our efforts to document and understand the issues that form the basis of this chapter is the firm belief that global cooperation can contribute to the redress of health and disability concerns among Indigenous peoples. We believe that global efforts in communicating the extent to which Indigenous women with disabilities have been marginalized, both by culturally inappropriate services and insensitive or unhelpful research practices, can lead to unified representation so that their issues are taken seriously at local and national levels. We also believe that women, both as researchers and as community members, can take a lead role in designing community health programs and rehabilitation solutions based both on research as well as practice-based evidence. We believe that effective solutions to health disparities require a pluralistic perspective of our global society, with knowledge produced using culturally appropriate, community-based research practices—thereby helping ensure that all people have equal power to redress the causes of health and human services disparities. Through international collaboration and research, the need to acknowledge and respect differences in Indigenous service delivery or research can be fully recognized. Although the uniqueness of individual communities and people must be retained and valued, collaboration across the globe is likely to pinpoint important similarities, allowing Indigenous voices to be heard in force. As a result of this forum, it is clear to us that understanding the experience of a given Indigenous community, or nation, can only be enhanced by broadening the context and looking at similarly situated Indigenous persons in other countries (Marshall & Largo, 1999). Most important, global cooperation can address the extent to which Indigenous women with disabilities can move from a position of disadvantage due to their relatively small numbers to one of unified representation where their issues are taken seriously within the global community. The forum constituted an important step in the participatory action research process—in some ways, a closure gained by bringing together women who had asked to be brought together. However, the forum also constituted a beginning, the facilitation of multiple and international conversations that

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Figure 2.1 “Unfinished Journey” by Lauraine Barlow. The hand is saying “stop and sit for a while—let me tell you a story.” [Unfinished Journey]

would hopefully result in both global and local interventions, as well as document and confirm global and local respect for Indigenous ways of knowing (Cochran et al., 2008). Reflecting on the journey that led both to the forum and to the writing of this chapter, we realize its full impact on our lives, who we are, how it has changed us. It has reaffirmed for us that we can continue to learn beyond our education and that the key to learning is an openness to diversity.

REFERENCES Australian Bureau of Statistics. (2001). Census of population and housing: Selected social and housing characteristics, Australia. Publication no. 2015. Banks, M. E., & Marshall, C. A. (2004). Beyond the “triple-whammy”. Considering social class as one factor in discrimination against persons with disabilities. In J. L. Chin (Ed.), The psychology of prejudice and discrimination (pp. 95–110). Westport, CT: Praeger. Caldwell, J. Y., Davis, J. D., Du Bois, B., Echo-Hawk, H., Erickson, J. S., Goins, R. T., et al. (2005). Culturally competent research with American Indians and Alaska Natives: Findings and recommendations of the first symposium of the Work Group on American Indian Research and Program Evaluation Methodology (AIRPEM). American Indian and Alaska Native Mental Health Research: Journal of the National Center, 12(1), 1–21. Retrieved from www.uchsc.edu/ai/ ncaianmhr/journal_online.htm. Castañeda, J. G. (1995). The Mexican shock: Its meaning for the US. New York: New Press. Clapton, J., & Kendall, E. (2002). Autonomy and participation in rehabilitation: Time for a new paradigm? Disability and Rehabilitation, 24(18), 897–991. Cochran, P., Marshall, C.A., Garcia-Downing, C., Kendall, E., Cook, D., McCubbin, L., et al. (2008). Indigenous ways of knowing: Implications for participatory research and community. American Journal of Public Health, 98, 22–27. Davis, J. D., Erickson, J. S., Johnson, S. R., Marshall, C. A., Running Wolf, P., & Santiago, R. L. (Eds.). (2002). Work Group on American Indian Research and


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Program Evaluation Methodology (AIRPEM), Symposium on research and evaluation methodology: Lifespan issues related to American Indians/Alaska Natives with disabilities. Flagstaff: Northern Arizona University, Institute for Human Development, Arizona University Center on Disabilities, American Indian Rehabilitation Research and Training Center. Retrieved from www.wili.org/docs/ AIRPEM_Monograph.pdf. Department of Indian Affairs and Northern Development. (1998). First Nations populations in Canada. Ottawa: AFN Resource Centre. Du Bois, B. (1983). Passionate scholarship: Notes on values, knowing and method in feminist social science. In G. Bowles & R. D. Klein (Eds.), Theories of women’s studies (pp. 105–116). Boston: Routledge and Kegan Paul. Gergen, K. J., Gulerce, A., Lock, A., & Misra, G. (1996). Psychological science in cultural context. American Psychologist, 51(5), 496–503. Hughes, D., Seidman, E., & Williams, N. (1993). Cultural phenomena and the research enterprize: Toward a culturally anchored methodology. American Journal of Community Psychology, 21(6), 687–703. Kendall, E., & Marshall, C. (2004). Factors that prevent equitable access to rehabilitation for Aboriginal Australians with disabilities: The need for culturally safe rehabilitation. Rehabilitation Psychology, 49(1), 5–13. Marshall, C. A. (Executive Producer). (1995). Family voices (Video Documentary, 40 minutes). Marshall, C. A., Burross, H. L., García Juárez, L., & Santiago González, C. (2000). Assessing the needs and resources of Indigenous people with disabilities: Benefits for the US in terms of research utilization. Final report. San Diego: San Diego State University, Interwork Institute, Rehabilitation Research and Training Center of the Pacific. Marshall, C. A., & Cerveny, L. (1994). American Indian family support systems and implications for the rehabilitation process: The Eastern Band of Cherokee Indians and the Mississippi Band of Choctaw Indians. Final report. Flagstaff: Northern Arizona University, Institute for Human Development, Arizona University Affiliated Program, American Indian Rehabilitation Research and Training Center. Marshall, C. A., & García Juárez, L. (2002). Learning from our neighbor: Women with disabilities in Oaxaca, Mexico. Journal of Rehabilitation, 68(4), 12–19. Marshall, C. A., Johnson, M. J., Martin W. E. Jr., Saravanabhavan, R. C., & Bradford, B. (1992). The rehabilitation needs of American Indians with disabilities in an urban setting. Journal of Rehabilitation, 58(2), 13–21. Marshall, C.A., Kendall, E., Catalano, T., & Barnett, L. (2008). The spaces between: Partnerships between women researchers and Indigenous women with disabilities. Disability and Rehabilitation, 30(3), 191–201. Marshall, C. A., & Largo H. R. Jr. (1999). Disability and rehabilitation: A context for understanding the American Indian experience. Lancet, 354, 758–760. Marshall, C. A., Leung, P., Johnson, S. R., & Busby, H. (2003). Ethical practice and cultural factors in rehabilitation. Rehabilitation Education, 17(1), 55–65. Marshall, C.A., Sanders, J. E., & Hill, C. R. (2001). Family voices in rehabilitation research. In C. A. Marshall (Ed.), Rehabilitation and American Indians with disabilities: A handbook for administrators, practitioners, and researchers (pp. 219–234). Athens, GA: Elliott & Fitzpatrick. Marshall, C. A., Santiago González, C., García Juárez, L., & Bruyère, S. (2003). AMUDO and the Vecinos Project: Striving together to meet the needs of Indigenous women with disabilities in Oaxaca, Mexico. In A. Hans & A. Patri, Women, disability and identity. New Delhi: Sage. Sanchez, T. R., Plawecki, J. A., & Plawecki, H. M. (1996). The delivery of culturally sensitive health care to Native Americans. Journal of Holistic Nursing, 14, 295–307.

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Sanderson, P. L. (2001). American Indians: An overview of factors influencing health care, disability, and service delivery. In C. A. Marshall (Ed.), Rehabilitation and American Indians with disabilities: A handbook for administrators, practitioners, and researchers (pp. 27–41). Athens, GA: Elliott & Fitzpatrick. Smart, J. F., & Smart, D. W. (1991). Acceptance of disability and the Mexican American culture. Rehabilitation Counseling Bulletin, 34, 357–367. Smith, L. T. (1999). Decolonizing methodologies: Research and Indigenous peoples. New York: Zed Books St. Martin’s. Somerville, M., & Perkins, T. (2003). Border work in the contact zone: Thinking Indigenous/non-Indigenous collaboration spatially. Journal of Intercultural Studies, 24, 253–266. Stone, J. B. (2002). Focus on cultural issues in research: Developing and implementing Native American postcolonial participatory action research. In J. D. Davis, J. S. Erickson, S. R. Johnson, C. A. Marshall, P. Running Wolf, & R. L. Santiago (Eds.), Work Group on American Indian Research and Program Evaluation Methodology (AIRPEM), symposium on research and evaluation methodology: Lifespan issues related to American Indians/Alaska Natives with disabilities (pp. 98–121). Flagstaff: Northern Arizona University, Institute for Human Development, Arizona University Center on Disabilities, American Indian Rehabilitation Research and Training Center. Usdane, M. (1993). Supported employment: Working ideals. American Rehabilitation, 19, 29–32. Williams, D. (2001). Horizon is where heaven and earth meet. Sydney: Bantam Books. Young, T. K. (1994). The health of Native Americans: Towards a biocultural epidemiology. Toronto: Oxford University Press.

CHAPTER 3

Disability in the State of Qatar Asma Al Attiyah and Marcellina Mian

Q

atar, as a modern country, supports the right of children with special needs to obtain suitable opportunities to learn and to be integrated with other children as a way of shaping an inclusive society. This is a relatively recent development, however, and this chapter presents the history of how people with disability have been viewed in Qatar and the evolution of special education. The opportunities and challenges of higher education organizations and other organizations in developing special education in Qatar are discussed. Progress in governmental and nongovernmental services is notable, as exemplified by the implementation of inclusion of children with disabilities in regular schools and people with disabilities in social and cultural activities, such as sports. Parents of children with disabilities have played a prominent role in their children’s successes, in making services available to them and promoting their acceptance in the larger community. Some case studies on the achievements of people with disabilities in society are presented, together with their thoughts and dreams. Qatar is an independent sovereign Arab state ruled by His Highness, the Emir Sheikh Hamad Bin Khalifa Al-Thani (Ministry of Foreign Affairs [MOFA], 2007). Arabic is its official language, but English is widely spoken. The religion is Islam, and Shari’a law is the main source of legislation. Qatar’s political system is democratic. The constitution states that Qatari society is based on the values of justice, benevolence, freedom, equality, and high morals (MOFA, 2007). The country is located on a peninsula on the east coast of the Arabian Peninsula on the west coast of the Arabian Gulf. Qatar is about 11,521 square kilometers (4,448 square miles) in size (MOFA, 2007). At the last census,

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in 2004, its population was 744,029 people, but this was estimated to have risen to 838,065 (General Secretariat for Development Planning [GSDP], 2007) in 2006, with approximately one quarter to one third of these being Qatari. Doha, the capital city, is home to 83 percent of the country’s population. The country is rich in oil and natural gas. Based on official figures from 2005, there are about 6,000 people who are officially registered as having a disability in the country (GSDP, 2007). According to data from March 2004 (GSDP, 2007), the cause of the disability is congenital for about 55 percent, pathological (not otherwise specified) for about 32 percent, and the result of accidents in about 8.5 percent. About 60 percent are male and about the same percentage are aged between 5 and 39 years (GSDP, 2007). About 5 percent are under 5 years of age and another 10 percent, approximately, fit into the each of the next five-year groupings to age 19. Just under half of the overall population 10 years and older is uneducated; about one fifth can read and write. Just over 10 percent finished primary school (grades 1 to 6) and just under 10 percent finished preparatory school (grades 7 to 9). About 7 percent finished secondary school (grades 10 to 12), and only 3 percent finished university, compared to 14 percent in the general population (GSDP, 2007).

SPECIAL EDUCATION HISTORY Governmental Schools and Services The Ministry of Social Affairs (MSA) (Al Said, 2002) began to provide social services for citizens in l963, through subsidies to families of people with disabilities. Over time, they also helped to put in place programs to assist affected families. They established policies and procedures to govern social services developed in Qatar for disabled people as part of their mandate to oversee these services for all Qatari society. When special education was introduced in Qatar in 1974, there was only one class for children with hearing impairment attached to an elementary school for boys in Doha. In 1980, the number rose to three classes in the same school taught by eight teachers. These were expanded to include boys with hearing impairments and mental retardation (Al Said, 2002). The first institution for the disabled, the Al Amal Institute for Males, was established by law in 1981, under the Ministry of Education (MOE) for teaching the hearing impaired and the deaf. It should be noted that the name “Al Amal,” which means “hope,” is often used in the Arab world for services for the deaf and hearing impaired. In the next few years a counterpart for females was added and two more schools, the Mental Retardation Schools, were opened (Al Said, 2002). These institutions provided programs for diagnosis, assessment, and training for children with hearing impairment, including those with multiple disabilities. These programs have now become part of Al Shaffalah Center, described shortly. In 1984, the Special Education Department, under the Ministry of Health, instituted services for children with physical disabilities and in 1987 started to deliver the general MOE curriculum to these children (Al Suwaidi et al.,

DISABILITY IN THE STATE OF QATAR

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2005). In 1994, with funding from the Qatari Association for Special Needs, described shortly, a new building for the department began to serve all educable children with multiple disabilities from 3 to 14 years of age who were registered with the department. Its aims were to evaluate and develop different abilities in individuals with disabilities, coordinate services through different hospital departments, and present comprehensive medical care for children during their training and education. It aims to transfer children with physical disabilities to mainstream schools after grade 4. In 1991–1992, a Speech Therapy and Psychology Counseling Unit was started to provide services for children with learning and emotional problems (Al Suwaidi et al., 2005). In 2002–2003, the unit began to provide and coordinate services for individuals with learning disabilities, speech and communication disorders, and psychological disorders at some MOE primary and secondary schools through professional teams, including a psychologist and speech therapist. In 1995, the MSA introduced a system for categorizing people with disabilities to determine eligibility for financial assistance (Al Said, 2003a). This categorization was based on the affected person’s age, marital status, and income. Children with disabilities start receiving an allowance from the MSA from birth, and the amount they receive increases with age. When they start working they receive a salary as well as a housing allowance and funding labeled “social support” from their workplace, as for any Qatari citizen. If they marry, their salary increases the same way as any other Qatari citizen who marries, and their disability allowance also increases. If the family is of low income, the government will also provide housing, including special accommodations, if they need it. If individuals with disability are adult, single, and of low income, they will also receive the housing allowance. In 1997, the first meeting of the Ministers’ Council, which includes all government ministers, approved legislation to provide the same free care for non-Qatari individuals with disabilities as enjoyed by Qataris, including physical therapy and free books and transportation for schoolchildren (Al Said, 2003a). The council also established a special unit at Rumeilah Hospital to provide care and rehabilitation services for older individuals with disabilities. Rumeilah Hospital was started in 1957 and restructured in 1977 (Al Said, 2003a) Since its founding, it has provided medical care for children with disabilities and the elderly, in addition to providing rehabilitation and physical and occupational therapy for people with traumatic injuries, such as the loss of limb or congenital malformations. It includes a special education department to teach and train children with disabilities with teachers funded by the QASN. The hospital’s rehabilitation department focuses on helping children develop greater independence, self-care, and different abilities, enhancing their motor, language, and communication skills. The speech therapy department was started in 2000 for early intervention in children with language difficulties. The Supreme Council on Family Affairs (SCFA) was established in 1998, by decree of the Emir, under the presidency of His Consort, Her Highness Sheikha Mozah Bint Nasser Bin Abdullah Al-Missned (SCFA, 2005a). The SCFA seeks to adopt policies, lay out plans and programs, and launch initiatives that contribute to preserving the family unit by developing its potential and

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protecting its members. Her Highness believes in the vitality and importance of the family and the child’s role in society, particularly of children with special needs. She provides for individuals with disabilities and their families, through the establishment and funding of a number of institutions for them, most recently the Shafallah Center for Children with Special Needs and the Learning Center. She provides patronage and attends many international, regional, and national conferences on this issue. Her attention to this issue encourages the rest of society to attend to the rights of this sector of the population. The Special Needs Unit within the SCFA contributes to achieving the mission of the SCFA (Fawzan, 2003). It focuses on ensuring quality of life for individuals with disabilities and their families through different programs and projects related to its National Strategies for People with Special Needs (SCFA, 2005b). One strategy aims at enhancing services for people with disabilities to improve their quality of life, and the other aims at academic inclusion of people with disabilities in regular schools. In 2000–2001, the Special Needs Unit started to draft the Law for People with Special Needs and its executive bylaws (Al Said, 2003a). Through the SCFA, Qatar also became a signatory in 2007 to the UN Convention on Disability Rights, becoming the 100th country to sign the landmark document (UN News Centre, 2007). The committee has also been responsible for a number of initiatives, including the establishment of a diploma course in special education at Qatar University, the publication by the Qatar Post Foundation of a stamp with income devoted to supporting activities for individuals with disabilities, agreement with Hamad Medical Corporation to add a stamp on health records of individuals with disabilities to facilitate scheduling of their procedures, establishing a genetic counseling center, and designating disabled parking spots at all in parking facilities in Qatar for individuals with disabilities. It has commissioned studies and reports such as the National Report on the Implementation of the Beijing Platform for Action in the Special Session for the UN General Assembly and Available Work Options for Individuals with Disabilities Evaluation Study. It has promoted awareness of issues related to people with disabilities, through activities such as the Annual Individuals with Disabilities Festival, a workshop for mothers on early intervention for their children with special needs, conferences, celebrations, and symposia, including the 2002 First Gulf Cultural Seminar for Special Needs Persons, the Seventh Scientific Seminar of the Arab Federation for Deaf Care Corporation (2002), the Third Gulf Forum on Disability (2003), and the First Gulf Cultural Forum on Special Needs (2004). In a 2007 speech to the Shura Council, which is a legislative advisory body, the Emir of the state of Qatar, Sheik Hamad Bin Khalifa Al Thani, outlined his vision for comprehensive development of Qatar and focused on education as the main pillar for developing the country (Special Council on Education [SEC], 2008).

The Academic Inclusion Project The Law for People with Special Needs declares that children have to be educated in the “least restrictive environment appropriate” to meet their


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“unique needs” (MOE, 2006). However, the concept of including them in general education is relatively new in Qatar. In 2001, the Special Needs Committee of the SCFA established a task force to begin planning for including children with physical disabilities in the MOE schools (Yossef, 2002). The lack of barrier-free schools had been a hindrance to inclusion, but since accessible schools were under construction in 2001, the physical impediments to inclusion were eliminated. The academic inclusion concept means teaching students with disabilities together with typically developed students in regular classrooms either full- or part-day. It involves practical implementation of the principles of normalization of children with disabilities at the school level, which aims at achieving quality and equivalent opportunities in education. Since the general school is the normal place of universal education in the country, academic inclusion in general school is the best option for Students with Disabilities and their families. The school is responsible for developing the curriculum, procedures, and systems, and inclusion of Students with Disabilities is a comprehensive and continuing process shared by all school staff, parents, communities, and society. Flexibility in planning polices, practical implementation, and offering opportunities for innovations are important for successful inclusion. The Inclusion Project in Qatar was introduced in stages starting with two schools. In the Preparation Stage, 27 children (13 boys, 14 girls) from the hospital school were chosen for inclusion. They were chosen because their IQ scores were average and they kept up with the MOE curriculum. Related service personnel were recruited from Egypt, Tunisia, and Jordan. Each school had a team consisting of a speech therapist, a physiotherapist, and a psychologist, plus a group of inclusion teachers selected from volunteer teachers in the MOE system. The inclusion teachers were given workshops to prepare them to be special education support teachers for the children with physical disabilities. All teachers at both schools attended workshops before the program started (Yossef, 2002). The special needs committee tried to prepare both groups of children for inclusion ahead of time. Each child was introduced and given presents at an assembly on the first day of the program. This project was descriptive, and children were interviewed individually to provide opportunities for interaction and to ensure they understood the questions. In 1998, inclusion started on an individual basis at the secondary level for students who were visually impaired in three schools (Al Boineen, 2003). Now there has been an increase in the number of inclusion schools for the people with visual impairment or blindness, especially in independent schools from the primary to the secondary level. The Implementation Stage focused on providing and presenting support services, facilities, and resource rooms for children with psychical disabilities and learning disabilities at the chosen schools. In the third stage (2003–2004), the inclusion project started at the two chosen schools and in subsequent stages more schools were added, including five female primary schools, four male primary schools, and one female and one male preparatory school. School activities were modified to suit the abilities of students so that they could achieve their goals as identified in their individual educational plan.

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Comprehensive individual educational programs were implemented to develop the different abilities in each student, using various recourses as observations, interviews, and formal and informal assessments. Multidisciplinary supervision was provided by the Special Education Department of the MOE, which is responsible for the supervision of the team working with inclusion. Additional services provided for the children with disabilities are psychotherapy and social services for psychological testing, behavior analysis and counseling, speech, and physical and occupational therapy. As of the 2006–2007 academic year, there were 35 inclusion schools. Thirty-nine boys and 57 girls with physical disabilities were included in primary schools. Eight boys and 10 girls were included in preparatory school. The boys and girls attend separate schools. Early indicators about the effectiveness of the inclusion program, from both general education children and those with disabilities, are optimistic. The majority of the children did not talk directly about the subject of disability; instead, they saw each other as children first. This may indicate an attitude of acceptance toward children with special needs on the part of young general education children (Al Attiyah et al., 2005). However, the study found that students showed some negative attitudes and some aggressive behavior toward children with special needs. These are important challenges to effective inclusion. Children have a less negative attitude toward differences than adults; therefore, it is important that they have experience with all types of differences from an early age to build positive attitudes toward children with special needs and promote their right to inclusion (Lazarus & Al Attiyah, 2005). Some examples of comments from the children include: • Fatima, a 10-year-old Qatari wondered, “Will they be beautiful? Will they have frightening shapes?” She said, “We will give the hope for those children in life for doing everything like other normal children” (Al Attiyah & Lazarus, 2007, p. 368). • Faisal, a nine-year old Qatari, wondered what “children with special needs” meant. “Are they like us or different? If they are different, in what way?” (Al Attiyah & Lazarus, 2007, p. 368). Then he added, “I don’t imagine being like them one day. . . . They are different, not like the other children in the school, but we can see the bright blossoms within them.” Faisal said the children face a lot of problems in the school, such as their peers’ aggression toward them; pushing them, laughing and cursing them, stealing their things, taking their money, lying to them, trying to attack them. Also, they don’t have chance to the answer questions in class and share in different activities. Faisal felt that the children at his school should be given very clear instructions not to hit the children with special needs. He said they should “help them if they want, especially helping them to walk, to write, to read, put nice things in their wheelchair, help them if they are upset, and to celebrate them” (p. 368). • Aisha a 10-year-old in fifth grade, and in a wheelchair, described the school as big and beautiful compared to her special school. She says there is “no difference between us and the normal children” (Al Attiyah & Lazarus, 2007, p. 368).


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• Hassan, is a nine-year-old with cerebral palsy who said he was most happy about going to the new all-male school because there would be many children to play with. He said he felt at home from the first because all the teachers were smiling at him, but he feels different because he cannot play sports like the others. He says he hates some of the boys because they laugh at him and talk about his disabilities. After seven months at his new school, Hassan felt positive and hoped all his peers in the special education department “will be here with me. This is a new life for us” (Al Attiyah & Lazarus, 2007, p. 369). The Inclusion Project led to the appointment of a committee to develop a full inclusion strategy for the MOE and SCFA (Al Attiyah et al., 2005).

The University and Special Needs Article 49 of the Qatar constitution states, “Education is the right of all and the State shall extend efforts to achieve fair and appropriate access in education for all” (Qatar University, n.d.) As the national institution for postsecondary education, Qatar University has always been keen to provide educational opportunities that ensure fair and appropriate access to programs, services, facilities, and activities for students with special needs. Its vision includes becoming a model inclusion program for students with special needs. Admission to Qatar University is based solely on an applicant’s qualifications and record of achievement, regardless of any special needs. All applicants to the university are reviewed through the same admissions process. Qatar University offers designated staff to assist students with special needs throughout their time at the university (Qatar University, n.d.). Students are provided with quality care and appropriate services based on their individual needs. These services rely on available technologies and the latest scientific developments in this area, and include books in Braille, such as the Qur’an and dictionaries; transferring from Braille to sighted print; scanning print to speech; closed circuit titles and portable text magnification systems; appropriate support, such as an assistant reader, in doing research, assignments, and exams; technological aids and training courses in computer; a tutor for students with learning disabilities; training courses in mobility; and books on CD or recorded tapes for visually impaired students. The Special Needs Office was established in 2007 at the behest of the university administration, to meet the growing demands and expected increase in the future number of students with special needs at the university (Qatar University, n.d.). This office provides the services and equipment to support students with special needs in the university. One of the most prominent services provided is the resource room, which is equipped with the latest modern technical equipment.

Teacher Training in Qatar Special Education Teacher-Training Program is the current special education diploma program opened to students in February 2002, with a class

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of 42 postbaccalaureate students (Lazarus, Baker, Al Attiya, Denning, & Fakieh, 2004). The faculty of the University of Qatar developed it over a period of two years in response to a formal request from the SCFA. The council based its request on Qatar’s need to develop its own special education teacher-training program since the majority of special educators in the country was non-Qatari. Consultants from York University in Canada worked with faculty members in the Mental Health Department to develop a three-semester diploma program encompassing eight courses and two field experiences totaling 31 semester hours. In 2003–2004, the program was evaluated in light of the university’s efforts to reform and restructure its programs (Lazarus et al., 2004). The program was revised in light of the evaluation and the new program was implemented in 2004–2005 (Lazarus et al., 2004). The emphasis of this new program is on recognizing, assessing, and working with children with mild retardation, learning or behavior problems that are not currently being met in the public schools of Doha. It needs to do more development in the centers of the special education. This graduate diploma in special education focuses on preparing teachers to lead special education classroom for students receiving special education services. Graduates of the diploma program are capable of setting up a school resource room program. They are prepared to assume positions as co-teachers or lead teachers in an inclusive classroom environment or to be self-contained special education teachers in a regular school for children with more needs than can be provided on an inclusion or part-time basis, but who do not need to be in separate special school. In 2006 the program was academically reviewed by the Enhancement of Quality Assurance and Institutional Planning at Arab, a project funded and implemented by UN Development Program/Regional Bureau for Arab States (UNDP/RBAS). The results were very positive (Al Attiyah & Khaliefa, 2006). In September 2008, the university started a master’s in special education in response to the report and societal needs.

NONGOVERNMENTAL ORGANIZATIONS The Qatari Association for Rehabilitation of Individuals with Special Needs was established in 1992–1993 and it has three branches: the Cultural and Social Center, the Educational Center and the Rehabilitation Center (Al Said, 2003a). The Cultural and Social Center provides cultural, social, rehabilitation, and vocational services and facilitates employment of individuals with disabilities through collaboration with some governmental and nongovernmental associations. The center publishes the Al Hayah Journal and has responsibility for media that focuses on the association and the activities of its centers. The Educational Center was established in 1993 to present different training services for individuals with severe mental disabilities and multiple disabilities who are not accepted in special education school related to the MOE.


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The Rehabilitation Center was established in 1999–2000 and functions as a day care facility to provide respite for families. It provides a comprehensive vocational, social, and psychological services for persons older than 14 years of age, usually with severe disabilities and low cognitive abilities, who are not eligible for services elsewhere. The association also provides general services, such as planning and supervision of the various association centers, and assisting association members and their families in obtaining discounts on travel tickets. It also works for the enlightenment of society about the needs and challenges of people with disabilities and participates in national and international conferences. The Qatari Disabilities Sports Organization was created in 1993 to provide an opportunity for individuals with special needs to participate in sports activities (Al Said, 2003a). In July 2001, the Qatar Sports Federation for Special Needs was formally established by the president of the Qatar Olympic Committee to help integrate people with disabilities into society through sports and encourage them to participate in national and international championships and tournaments (Doha 2016, 2007). Its mission is to assist people with disabilities to discover their skills and have an outlet for their leisure time, promote social relationships between disabled people and the rest of the society, and encourage the spirit of cooperation among all members of society and popularize sports for people with disabilities. The federation organizes activities in camps and through coordination with local institutions and schools for people with disabilities. It sponsors people with cerebral palsy or related neurological conditions, people who are blind or visually impaired, people who are deaf or hard of hearing, and people with intellectual or physical disabilities. The Qatar Sports Federation for Special Needs is a member of the following regional and international sports organizations: the International Paralympic Committee, the Cerebral Palsy International Sport and Recreation Association, the International Blind Sports Association, the International Wheelchair and Amputee Sports Federation, the International Sports Federation for Persons with Intellectual Disability, the Arab Sports Federation for Special Needs, and the Asian Paralympic Committee and the Gulf Cooperation Council (GCC) Committee for Sports of the Disabled. Its athletic activities include power lifting, table tennis, wheelchair basketball, soccer, and goal ball. The Learning Center (TLC) (Qatar Foundation, 2007) is a private, nonprofit international educational community and was established in 1996 by the Qatar Foundation for Education, Science and Community Development. His Highness the Emir and his consort, Her Highness Sheikha Mozah, established the Qatar Foundation in 1995. Her Highness and Dr. Ghadah Fakieh provided the inspiration and guidance for the TLC in its early days, based on the premise that each child is unique and each has unique strengths, which the TLC hopes to nurture, and weaknesses, which the TLC aims to remediate. It seeks to serve students who have average to above average learning potential and who can benefit from the small, individualized classes facilitated by skilled educational specialists. TLC provides instructional services, diagnostic consultation, and therapeutic services to students with academic problems and a supportive learning

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environment, enabling students to ensure their place in the larger world community as self-confident and self-reliant adults. Parents, teachers, students, administrators, and support staff equally assume responsibility toward achieving the goal of positive and effective instruction. Outreach programs such as professional training, lectures, parent information sessions, and community awareness help promote public understanding and knowledge of current research in child development, teaching, and parenting techniques. The Learning Center School (TLCS) is a 1st- through 12th-grade program that teaches the traditional educational curriculum, which includes math, English, social studies, and science, plus art, music instructional technology, study skills, health, physical education, and Arabic. Arabic is the fifth major language spoken in the world today, and the language that most of the students will need throughout their adult life to be personally and academically successful. Books and materials are obtained not only through the MOE but also from throughout the Arab world. Each student has an individual education plan based on teacher observation and psychoeducational testing that is designed to measure the progress a student makes during the year. Students at TLCS participate in physical education daily as an adjunct program that is extremely important for students with difficulties such as attention deficits. At TLC, parent participation and cooperation are critically important in regular student activities, the parent–teacher association and when students are experiencing difficulties. Al-Noor Institute for the Blind (Al Suwaidi et al., 2005) was inaugurated in 1998. Its name means “light” and is used in the Arab world to identify institutions for people with visual impairment. This institute works to extend educational services to students from 3 to 21 years old to help them overcome their disabilities and prepare them to assume a more socially productive role. The institute accepts children and youth with visual impairment or blindness and multiple disabilities. Prior to its establishment, children with visual impairments were sent to other Gulf countries, at government expense, or were kept at home. The center provides professional services to identify the child’s abilities and needs, psychosocial counseling and guidance, and educates the mother and trains her on how to manage her child in the most appropriate way through weekly home visits by a team of professionals. The Shafallah Center for Children with Special Needs (2007) was established in 1998 in response to directives of the president of the SCFA, Her Highness Sheikha Mozah Bint Nasser Bin Abdullah Al-Missned. At the beginning, it could only receive a small number of children due to limited facilities and capacity. As a result, the board of directors conceived a plan to build a much larger state-of-the-art facility equipped to meet the needs of all of the children, whatever their physical and mental disability. The center serves children from 3 to 21 years with physical, intellectual, and developmental disabilities, and autism spectrum disorders. It aims at providing all of the children with the best care, services, and educational facilities that will enable them to adapt to the surrounding environment to live among others in the community. Its other aims are to provide support and family counseling services to families of children with special needs, including individual and group therapy; to increase community awareness on dealing with children


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with special needs, as well as fostering acceptance and understanding of the nature of disabilities; to serve as an advocate for public policy and legislative support of appropriate educational and vocational programs for children with special needs and to provide training opportunities through Shafallah Center and establishing an international entity specializing in this field. The Shafallah school program provides adapted regular school curricula combined with a functional curriculum. The ratio of teachers to students is 1:3 in all school programs except the Autism Unit, where the ratio is 1:2. The school is divided into five units. The Early Intervention program is designed for children aged three to five years. School Unit One cares for students aged 6 to 14 years with mild and moderate learning challenges. School Unit Two is for students with moderate and severe intellectual or developmental disabilities, aged 6 to 21 years. The majority of these students are multiply disabled, often with concomitant physical impairments. The Autism Unit is tailored to those students diagnosed with autism spectrum disorders, whose ages range between 6 and 21 years. These students learn best with a structured teaching model such as TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children). The Vocational Training Unit serves students aged 14 to 21 years. The program aims at matching a suitable job to every adolescent or young adult through evaluating the students’ interests and abilities and encouraging exposure to multiple job experiences. The center also provides clinical and therapeutic services as well as school health and nutrition oversight by doctors and specialists with international commendation. These clinical services, which are based on the needs and assessment of each student include child and adolescent psychiatry; music therapy; cognitive evaluation; speech and language therapy; physiotherapy; occupational therapy; adaptive physical education and recreation; and social work, family support, and community awareness. Social workers assure that good communication exists between the Shafallah Center and its families through daily communication. It also links with the community, by offering a wide range of training, hands-on workshops, support, counseling, and lectures. The Research and Professional Development department aims at ensuring evidence-based practices and at ensuring that the Shafallah Center plays a vital role in international special education. Professional development encompasses all staff and families. Staff receives ongoing professional development, to ensure current best practices. Other training ensures that students, parents, siblings, and extended family members master those tools that provide individuals with special needs maximum independence in the home and community. The center houses a multimedia children’s library that allows students to explore and learn via their strongest modalities. Books and manipulatives for parents and general public are available for loan. The professional library is extensive and includes books, print, and online journals. One of the most important additions to the spectrum of services provided by Shafallah to its students and community is the three-dimensional digital theater. It is equipped with state-of-the-art sound and image technology, the first of its kind in the

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Middle East. The Digistar Theater has a core educational function and is the link between the Shafallah Center and the latest important events and educational screenings such as conferences, debates, and fairs held in Qatar and internationally. It provides subtitles with simultaneous translation in Arabic, English, French, and German. Qatari Centre of Social Culture for the Deaf (Youth General Authority [YGA], 2005) was established in 2005 by the Youth General Authority, which provides its funding. It is the first social center to be specialized in hearing impairment and deafness. Its mission is to expose people with hearing impairment and deafness to all activities available in the society at large. It allows people who are deaf or hearing impaired to meet and engage in different activities such as social, cultural, and physical programs. Its aim is to help them build social relationships and develop the abilities and skills that will support their integration into society. It has two sections, one male and the other female; the female section provides summer training programs, such as computer skills. The center promotes sign language. Sign language in Arabic is fairly new and attempts at standardizing the language through Arab countries have produced almost as many sign languages as there are Arab-speaking countries, yet with the same sign alphabets (Abdel-Fattah, 2005). The complexities of Arabic and the variation in its spoken forms make for active discussions in its evolution. The Qatar Social and Cultural Center for Blind (YGA, 2006) was established by the YGA in 2006, based on the belief that people who are blind have a right to show their abilities. It was the first specialized center for people who are blind. The center’s philosophy is to integrate people who are blind into mainstream life without restriction or obstacles that may block their complete emergence and practical contributions. It calls for including people who are blind in all community activities to enhance human relations between people who are blind or visually impaired and the community. It aims to make people who are blind work on activities that may benefit them. Its objective is also to prompt relations between the members of the center and members of the Arabic and international centers who share the same objectives. The programs and activities of the center are divided into two parallel directions. The first is tailored to people who are blind or visually impaired, comprising a group of cultural, social, and instructional programs aimed at integrating people who are blind into the community without any restriction. The second comprises a group of programs and activities aimed at spreading comprehensive awareness about people who are blind. Several centers have been established by families of persons with disabilities. This includes the Qatar’s Center for Speech and Hearing established in 2001, the Al Brua Center established in 2003–2004, and the Halla Educational Center established in 2004 (Al Suwaidi et al., 2005). The center provides education and rehabilitation, in addition to speech and communication skills, for mental, hearing and learning disabilities, autism, hyper activity, and behavioral disorders. Parent counseling sessions are held regarding the child’s program and progress. Parents have to pay fees for their child’s attendance at the center.


39

ROLE OF PARENTS OF CHILDREN WITH DISABILITIES Parents have played active roles in developing the services provided to individuals with disabilities, as is shown by many of them starting private centers to provide different services, participating and sharing in all activities related to disabilities, such as sharing actively in conferences, workshops, and discussion sessions on the inclusion strategy planning and implementation process, working as volunteers in all activities related to disabilities, presenting their experiences with their children with disabilities in the conferences, and leading by example.

Case Example: Kanam Kanam’s mother is a very active woman, dealing with her son’s unique disability. Kanam is intelligent and speaks three languages: Arabic, English, and French (Al Said, 2003b). His lower spinal cord is split in three due to a congenital condition; his disability has become very complicated with his advancing development. His twin brother is a typically developed child. The parents had been exempted from their work to help support their child. He needed many difficult operations, so the parents faced many challenges, including very difficult decisions about their son’s future and teaching their children’s acceptance of Kanam and how to interact with him. The parents have been creative in many ways to help Kanam to be as independent as possible. For instance, in planning how to integrate K with his peers and society, his mother wrote his story in very simple words suitable for children in different languages and prepared an audio recording about her son using a nice expression for her son, always calling him “Happy Kanam.” She has participated in many activities with her son in special and general schools, giving her son a role with other children, becoming a volunteer to help others parents and children with physical disabilities and presenting her experience with her son at conferences. She has tried her best to integrate her son in general education after preparing the classroom with all facilities for her son and preparing his peers and their parents to accept her son. She still faces very hard challenges related to K life within his developmental capabilities. (P2-3) In 2007, about 50 parents of children with disabilities established an organization called Parents of Children with Disabilities Organization to provide psychological and social support for parents and families of children with disabilities, and deal with different challenges that they face. It is the first such association in Qatar, and the third one in the Arab countries.

ACHIEVEMENTS OF PEOPLE WITH DISABILITIES IN QATARI SOCIETY Case Example: Hayat Khalil Hassan Nazar Heji Ms. Hayat Khalil Hassan Nazar Heji made significant contributions to her workplace and worked diligently to improve her abilities, both personally and professionally, to raise her competencies face work challenges and difficulties

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of life (Success, 2007). She lost her sight completely in 1985, when she was 10 years old. This did not prevent her from getting her high school certificate with distinction and obtaining her bachelor’s degree in Arabic with distinction from Qatar University. Her remarkable determination and her never-ending aspirations have empowered her to seek further challenges and explore new frontiers. She has excelled in English to the point of receiving a master’s degree, followed by a doctorate in education from Saint Joseph’s University in Pennsylvania. She became director of Al Noor Institute for people who are visually impaired or blind.

Case Example: Ali Abdullah Mr. Ali Abdullah, with physical disabilities, has a master’s degree in business administration from the United States and international certification in sports arbitration (Al Said, 2003b). His wife works as an assistant teacher at university, his first daughter is enrolled in Weill Cornell Medical College in Qatar, his son is studying in an American secondary school, and another daughter is at a primary American school. He stared in special needs sports in 1998 in Jordan, then competed in the 2000 Olympics for special needs and won a golden medal at the Fifth European Open Sport for javelin. In 2002, he received an award from Gulf Sports for Individuals with Special Needs and the Best Sportsman in 2002 from AL Sakar Sport Journal. His dream is to speak about his country, Qatar, to the world through his achievements.

CONCLUSION There are positive perspectives, in Qatar, of individuals with disabilities, both as they view themselves or as others view them. Many indicators reflect this, as many people in the community participate and share in activities, either social or scientific, with individuals with disabilities. Political and social awareness are evident in the actions that have been taken in the country. Parents of individuals with disabilities play a very powerful role in the community; they are strong advocates as they become able to speak out about their child with disability, teach themselves how to manage and educate their child, and transfer their knowledge and experiences to other families who need those skills. They participate in many volunteer activities and they provide input to various committees at the governmental and non governmental levels, especially in the SCFA. Decision makers believe that parents have a right to share and should be part of any planning or implementation issues related to the disabled community. The individuals with disabilities themselves feel free to speak and express themselves and to participate in activities, as much as they are able, in Qatar and outside the country. All of this could not take place if there were not a positive perception of people with disabilities in Qatar. The challenge now is to meet the need for more professionals trained to work in different special education centers and schools, to continue the progress that has been made in this small country in addressing the special needs of people with disabilities.


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REFERENCES Abdel-Fattah, M. A. (2005). Arabic sign language: A perspective. Journal of Deaf Studies and Deaf Education, 10, 212–221. Al Attiyah, A., Al Abed, A., Al Balsha, A., Al Haddad, N., Lazarus, B., Meftah, H., et al. (2005). An inclusion strategy for children with special needs in the State of Qatar. Qatar: Ministry of Education and Supreme Council for Family Affairs. Al Attiyah A., & Khaliefa, B. (2006). Self evaluation document of special education diploma program, Qatar University, Enhancement of Quality Assurance and Institutional Planning at Arab Universities. Funded and implemented by UN Development Programme/Regional Bureau for Arab States (UNDP/RBAS). Al Attiyah, A., & Lazarus, B. (2007). “Hope in the life”: The children of Qatar speak about inclusion. Childhood Education, 83, 366–369. Al Boineen, A. (2003, December). The Qatar experience of integrating Al Noor Institute students into general education. Paper presented at the Regional Conference for Inclusion Education for the Blind, Beirut, Lebanon. Al Said, M. (2002). The State of Qatar’s experience in the special needs field. Special Needs Committee, Supreme Council for Family Affairs: Doha Qatar. Al Said, M. (2003a). Qatari experiences. Al Hayah Cultural Social Center Journal, the Qatari Association for Rehabilitation individuals with the Special Needs, 23, 6–9. Al Said, M. (2003b). The magic smile. Al Hayah Cultural Social Center Journal, the Qatari Association for Rehabilitation individuals with the Special Needs, 23, 2–3. Al Suwaidi, A., Al Robai, F., Iklef, A., Esawee, T., Al Moula, A., Al Moula, M., et al. (2005). Descriptive and analysis study about actuality of services presented on special needs organizations at state of Qatar. Doha, Qatar: Special Needs Unit, Supreme Council for Family Affairs. Doha 2016. (2007). The Qatar Sports Federation for Special Needs. Retrieved June 13, 2008, from www.doha2016.org/en/why_doha/sport_in_qatar/disabled_sport. Fawzan, S. M. (2003). The State of Qatar’s experience in the special needs field. Special Needs Unit, Supreme Council for Family Affairs. General Secretariat for Development Planning (GSDP), State of Qatar. (2007). Statistics: Annual abstract 2006. Retrieved March 6, 2008, from www.planning.gov .qa/Pup_Statistics_chap_2006.htm. Lazarus, B., & Al Attiyah, A. (2005, April 7). Children, families, and teachers: Viewpoints of inclusion in the State of Qatar. Paper presented at the Annual Convention of the Council for Exceptional Children, Baltimore, MD. Lazarus, B., Baker, A., Al Attiya, A., Denning, E., & Fakieh, G. (2004). Report on Proposed Modifications to Graduate Diploma Program in Special Education. Qatar University. Ministry of Education (MOE), State of Qatar. (2006). The Ministry of Education’s experience in academic inclusion students with disabilities in general education schools in the State of Qatar. Qatar: Author. Ministry of Foreign Affairs (MOFA), State of Qatar. (2007). General information. Retrieved March 6, 2008, from english.mofa.gov.qa/details.cfm?id=6. Qatar Foundation. (2007). The Learning Center. Retrieved March 1, 2008, from www.tlc.edu.qa/output/page5.asp. Qatar University. (n.d.). Special Needs Office. Retrieved March 1, 2008, from www .qu.edu.qa/html/SpecialNeedsOffice.html. Shafallah Center for Children with Special Needs. (2007). Welcome to Shafallah Center for Children with Special Needs. Retrieved March 6, 2008, from www.shafallah .org.qa.

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Special Council on Education (SEC), State of Qatar. (2008). His Highness the Emir outlines vision for comprehensive development. Retrieved March 1, 2008, from www.english.education.gov.qa/content/resources/detail/5578. Success. (2007). The Director of Al-Noor Institute Qatari Woman triumphs against all odds. Retrieved March 1, 2008 from: http://success2007.jeeran.com/. Supreme Council for Family Affairs (SCFA), State of Qatar. (2005a). Home page. Retrieved March 1, 2008, from www.scfa.gov.qa/english.asp. Supreme Council for Family Affairs (SCFA), State of Qatar. (2005b). The draft report on childhood in Qatar, reality and challenges based on rights national discussion for childhood national strategy. Doha, Qatar: Author. UN News Centre. (2007). UN convention on disability rights reaches milestone in signatories. Retrieved March 6, 2008, from www.un.org/apps/news/story.asp? NewsID=23208&Cr=disable&Cr1. Yossef, A. (2002). Inclusion: Students with special needs in general education. A report of the Social Education Unit Qatar: Ministry of Education. Youth General Authority (YGA), State of Qatar. (2005). The Qatari Centre of Social Culture for the Deaf brochure. Qatar: Author. Youth General Authority (YGA), State of Qatar. (2006). The Qatari Centre of Social Culture for the Blind brochure. Qatar: Author.

CHAPTER 4

Attitudes toward Inclusion in Primary Education in Greece Maria Agorastou, Efrosini Kalyva, Efthalia Kaderoglou, and Filippos Stefanidis

I

nclusive education in Greece is a new concept to both educators and parents. In the past two decades, considerable reforms have attempted to provide a policy framework for educators and parents to address some of the structural requirements that are needed for inclusion to work. Considerable research in the area of inclusive education, commonly referred to as inclusion, in the Greek public schools has shown an expansion of specialized services within inclusive education settings. Several studies on the attitudinal dimensions of inclusion have shown the need for a reconceptualization of inclusive education systems to respond to the complexity of inclusion and its day-today operationalization. We understand inclusion not as a disability-specific reform but as a tool for educational restructure that will allow all children to reach their full potential and have equal opportunities and chances with their nondisabled peers to reach their goals, whatever they might be. This chapter is an attempt of an interdisciplinary team of researchers, parents, and educators in Greece and the United States to present the real dimensions of inclusive education practices in Greece and the implication of inclusion in regard to policy decision making and practice. The chapter begins with a comprehensive review of the historical evolution of current policy regarding inclusion of primary schoolchildren in Greece and an overview of the studies that have been conducted in Greece so far. Finally, we provide a critical evaluation of the findings in relation to international studies. The chapter explores a 2007 study conducted by one of the authors (Kalyva) on the attitudes of teachers and parents of typically developing children and a qualitative study conducted by another author (Kaderoglou) with parents of children with developmental

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and learning disabilities (which include but are not limited to attention deficit-hyperactivity disorder (ADHD), autism spectrum disorder (ASD), Down syndrome, and mental retardation), special education teachers who work in inclusive settings, and their peers in mainstream education to assess the attitudinal dimensions of inclusion in depth as they pertain to both parents and teachers. This information will be used to make suggestions regarding future inclusion policy guidelines.

INTERNATIONAL POLICY FRAMEWORK The inclusion of students with disabilities in the general education classrooms is one of the major school reform movements of the 20th century. In the decade of the 1990s, inclusion emerged as a key international educational policy issue, which has resulted to the creation of numerous declarations and international and national directives (SUNBERG Declaration for Disabled People, 1981; Salamanca Statement for Special/Inclusive Education: A Framework for Action (UNESCO, 1994); International Top Conference on Social Development and Inclusion, Copenhagen, 1995; UN Dakar Framework for Action, 2000) addressing the rights of people with disabilities to fully and equally participate in all societal processes. The Salamanca Statement is the most comprehensive international directive to date that encompasses a variety of structural changes required to be adopted by all societies to achieve organizational changes that promote inclusion for all students. Organized by the government of Spain and UNESCO, the conference adopted the Salamanca Statement on Principles, Policy and Practice in Special Needs Education and a Framework for Action. More than 300 participants representing 92 governments and 25 international organizations met in Salamanca, Spain, in June 1994 to further the aim of education for all by considering what basic policy changes are needed to promote inclusive education, so that schools can serve all children, particularly those with special educational needs. These documents are informed and guided by the principle of inclusion, by recognition “of the need to work towards schools for all institutions that include everybody, celebrate differences, support learning, and respond to individual needs” (UNESCO 1994, p. 4). An additional point worth noting of the Salamanca Statement is the emphasis given to the benefits of inclusive education for both children with and without disabilities. Namely, it is explicitly stated that inclusive schools are crucial in establishing a culture of change toward discriminatory attitudes, creating welcoming communities, and “developing an inclusive society” (p. 6). It is clear from the foregoing statements that inclusive education is officially recognized both as an integral component of an equal and just society and as a structural requirement that will lead to more democratic school systems and quality education of all children. Indeed, the inclusive approach is an international movement, which advocates that all students, regardless of their differences, can and should be educated in general education classrooms. Research reviews and meta-analyses (Baker, Wang, & Walberg, 1994; Lipsky & Gartner, 1989) known as “efficacy studies” already showed that

ATTITUDES TOWARD INCLUSION IN PRIMARY EDUCATION IN GREECE

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educating children with disabilities outside regular education classrooms had little or no positive effects for students regardless of the intensity or type of their disabilities. More specifically, there was no evidence to support the premise that students with disabilities learn better in specialized settings, and “special-needs students educated in regular classes do better academically and socially than comparable students in non-inclusive settings” (Baker et al., 1994, p. 34). Cole and Meyer (1991), in a two year comparison study of segregated and inclusive settings, found that students in inclusive settings demonstrated significant progress on a measure of social competence, encompassing specific communication skills such as initiation, self-regulation, choice, and terminating contact. Other studies (Staub & Peck, 1995), responding to the fear that inclusion of children with disabilities in regular education classrooms would impede the progress of their classmates, found that there was no effect in the academic performance of classmates without disabilities and that the more time children with disabilities spent in regular classrooms, the more they achieved as adults in employment and continuing education. Despite the international interest and written declarations of the imperative of inclusion and equality in learning for all children and the growing research body suggesting the benefits of inclusive education for all students, there is still a gap between current stated policies of promoting inclusion and the reality of how it is operationalized in daily practices. Lovett (2000) argued that schools are faced with two conflicting impulses: to provide support to individual students and respect their unique needs, preferences, and beliefs (as well those of their parents and teachers), and at the same time to standardize academic success and social expectations. Furthermore, Lovett stressed that the shift between these strong currents represents something more than the “shift from special to inclusive education, it represents a larger crisis in educational philosophy and wider cultural concerns” (p. 107).

THE GREEK EDUCATION SYSTEM The Greek educational system is governed by national laws that have passed parliament and legislative acts (decrees and ministerial decisions). In Greece, the Ministry of National Education and Religious Affairs formulates and implements legislation, coordinates and evaluates regional services, administers financial support, approves primary and secondary school curricula, and appoints teaching staff. The supervision, facilitation between schools, and the maintenance of the school buildings is conducted by the prefectures (or, in large prefectures, the education offices). School activities and alignment with legal requirements is the responsibility of the head teacher. Teachers’ councils are responsible for the implementation of curricular requirements, attendance and discipline issues. School committees have administrative responsibilities and manage budgets for heating, lighting, school repairs, and equipment. Higher education institutions are self-governing under the auspices of the Ministry of National Education and Religious affairs. Prefectures and education offices are responsible for inspection and school advisers

46 Table 4.1

RESPONSES: PRACTICE, LEGAL, AND POLITICAL FRAMEWORKS Students in Inclusive Classes at Preprimary and Primary Level

Primary Education 2004–2005

Classes

Special preschools Inclusive classes in preschools Special primary schools Inclusive classes in Primary schools Total

115 78 668 1253 2114

Total Population of Students 385 248 2857 12,559 16,049

provide guidance to teachers. Law 2525/97 PEKESES—Regional Centers to Support Educational Planning—and law 2986/02 established a new assessment model, which places the evaluation of the educational work of schools on the Education Research Center (ERC) and the Pedagogical Institute (PI) (European Union Commission [EUC], 2006, p. 2). In Greece the duration of compulsory education is 10 years, from the age of 5 to 15. For the first seven years, students attend preschool and demotiko scholeio (pre- and primary school) and for the three last, they attend gymnasio (lower secondary education). There are currently 1.8 million students in the compulsory Greek education system, and 7.4 percent of the student population is of immigrant background. From the 1.8 million enrolled students, 734,651 are preprimary and primary education pupils (public schools only) from which approximately 16,000 students have been coded as special education students who attend either separate special schools or inclusive classes within the general public school (Ministry of Education and Religious Affairs, 2008). Table 4.1 informs on the number of pupils in inclusive classes at preprimary and primary level (Karapanagiotou, Michaelidou, Palaska, & Pantazopoulou, 2006).

SPECIAL EDUCATION IN GREECE Within the framework of changing global policies and educational strategies, Greece is mandated to align with all European countries and harmonize the educational system with the current conditions of the new multicultural Greek society. These changes have created new challenges in the Greek education system; to respond to the particular needs of all students, Greece is engaged in a process of ongoing reforms with particular emphasis on the promotion of inclusive education practices for all students. In Greece, the first law for Special Education (Law 1143/81, Official Government Gazette, 80, v.A’/31-3-81) was introduced and put into effect in 1981. Although some attention had been given to special education provisions before the introduction of the 1981 law, this piece of legislation—at least in writing—was one of the most important steps in the restructure of the special education system in Greece. The law established the categories of


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students with disabilities and the provisions available to them, but received much criticism from a variety of specialists and special education experts (Stasinos, 1991; Xiromeriti, 1997), based on the argument that it created a visible and explicit separation between special and general education. By classifying students into 12 disability categories it reinforced (rather than eliminated) discrimination (Tafa & Manolitsis, 2003). In response to the negative reactions and the strong criticism the law received, the Greek government drafted a new law four years later in 1985. The new act, on the Structure and Operation of Primary and Secondary Education, aimed at promoting the integration of a wide range of children with “learning disabilities” into mainstream primary schools. However, students with special educational needs continued to have limited access to the few schools with special provisions that existed throughout Greece. Students with learning disabilities were identified on the basis of their inability to attend mainstream classes due to their difficulties with literacy, arithmetic, and other persistent deficiencies in learning skills (Greek Government, 1985). Each “special class” consisted of at least eight students with learning disabilities of a moderate to severe nature, but there was almost no provision for students with more severe disabilities who were usually educated at special schools. It is important to note that educating a child with special education needs was not obligatory, and parents often chose to keep their child at home, since there was no appropriate form of education. At this point, it is equally essential to clarify that special classes in Greece did not function in the same way as the majority of other countries. For example, Vlachou (2006) explained that the Greek term “special class” was misleading, being similar to the U.S. resource or pull-out programs, or to what the British describe as part-time withdrawal in a learning support base. Therefore, she suggested that the term that could better depict the situation in Greece was “support room/class” instead of “special class.” The main aim of these special classes was to separate children with special education needs from typically developing children. The curriculum was specified by the Ministry of Education and the teachers had to follow these guidelines without deviation. In the 1970s, the Ministry of Education founded a two-year in-service training course for teachers who would work in special education. Teachers were chosen via written exams once a year and, once selected, would withdraw from their teaching post to complete their training. By law, teachers were obligated to serve in the special education sector as payback for this investment, but this was not always the case until today. As Kaderoglou and Drossinou (2005) pointed out, in Greece it is not the legislation itself but the implementation of the legislation that usually causes problems. As a result of this discrepancy, the vast majority of the teachers of the special classes did not have any extra training in special education, and this limited their ability to deal effectively with the needs of the students with special education needs (Efstathiou, 2003; Kaderoglou et al., 2006). Vlachou (2004, 2006) reported that the law created an increased popularity in special education as an alternative, and a direct result was the creation of more special schools. The special class model, which was introduced on

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a pilot basis in 1982, became the norm for special education provision, even without evidence of effectiveness and lack of a formal assessment and evaluation (Vlachou, 2006). Since the 1990s, many teachers pursued postgraduate studies in special needs education in Greece and abroad. To date, however, there is still a significant number of teachers with no specialized qualification who work in special education, especially in provincial areas. In response to the issue of teacher recruitment and retention in special education, the Ministry of Education and Religious Affairs established an extra allowance called “special working conditions allowance” as an incentive or reward for working with students with special education needs. Unfortunately, the provision of the allowance was not contingent on teacher qualifications in special education, which resulted in an overflow of unqualified teachers in the field. Law 2817/2000 on the Education of Persons with Special Education Needs (Greek Government, 2000) renamed “special classes” to “inclusion units,” reflecting an increased policy emphasis on inclusive education. The law enacted the design and development of individualized educational plans for children with special education needs, and stated that they must be accommodated within the general curriculum with the support of teachers trained in special education. For the first time, students with special education needs were educated, for the most part, in their mainstream classrooms, with the option of parallel support in the classroom, which is difficult to get as it is very expensive. Attendance in the integration unit is, in turn, limited to a few hours per week (no more than 10). However, in practice there are students with special education needs who remain in the inclusion unit for the whole day, because there is no alternative provision, their parents refuse to enroll them in a special school or the rest of the school’s staff refuse to accept them in the general education classroom. Since the enactment of the law, it is estimated that 70 percent of the identified population of children with special education needs have been placed in primary schools with inclusion units with the remaining 30 percent being educated in special-segregated provision (Stefa, 2001). New inclusion units are emerging all over the country, especially during the years 2004 to 2007 according to a recent report of the Special Education Directorate (SED, 2008). Furthermore the law established the Centers for Diagnosis, Assessment, Evaluation and Support (CDAES), to offer evaluation and support services to students, especially those identified with special education needs, their parents, and teachers. Staffing of these centers is another issue that has caused turmoil in the Greek educational community, as it is not clear what qualifications are needed to work there. As a new law that will be voted by the spring of 2008 (Stefanidis, 2008) will make education compulsory for all children with special education needs until the age of 15, as is the case for the rest of the children. Parents who do not send their children with special education needs to school will be prosecuted. More inclusion units should exist in all schools in every part of Greece to cater to and educate students with special education needs. Hundreds of


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denunciations have been recorded by the Hellenic Union of Special Educators,1 stating the inadequacy of inclusion units. In many schools, inclusion units are often created in old storage rooms or kitchens, without windows or enough space to move around. These problems will be magnified as the school population grows in numbers. These incidents point to an undercurrent attitude of the school community that education of special education needs children as a waste of time and dwells on the dilemma of allocating resources to special education needs that “ought” to be spent on regular education. The resources that teachers have to work with students with special education needs are very scarce, and they must often create their own material out of their salaries. The Hellenic Union of Special Educators (HUSE) (Kaderoglou et al., 2007) stated that the Ministry of Education should make provision for at least two additional classrooms to be used as inclusion units with a penal clause that these classrooms will remain as such. Furthermore, HUSE fears (Kaderoglou et al., 2007) that the current tendency to replace special schools with inclusive practices will create small special schools hidden within the ordinary ones with the least possible funding. In the most recent draft of the law on special education, there is provision for two types of inclusion units in primary schools. Inclusion unit type A will cater for the needs of children with “light” learning difficulties, who will be offered a specialized curriculum for a limited time frame during the week. Inclusion unit type B will cater for children with moderate and severe disabilities, providing a specialized program for an extended period of time on a daily basis. In the name of equity of rights, the profile of an inclusive school might be used to justify an underresourced and scarcely prepared school system to include children with severe disabilities, putting in danger their right for meaningful education (Kaderoglou et al., 2007). It is essential to address these issues if the Greek government aims to make the education of children with special education needs compulsory. Zoniou-Sideri, Karagianni, Deropoulou-Derou, and Spandagou (2005) have viewed the model of integration units as an “add-on” policy that does not affect the overall operation of primary schools, thus leaving unchallenged the structures of mainstream education that perpetuate stigmatization and segregation. Although it is unquestionably important to acknowledge the right of all children with special education needs to access mainstream education, it does not suffice to introduce a new terminology without further substantial reform of mainstream schooling. Moreover, the continuing emphasis that is placed on individual deficits and a remedial approach obscures the institutional restructuring needed for genuine inclusion (Vlachou, 2006). The limited restructure of the education system to date has resulted in the expansion of specialized services and individualized support provided when necessary, as it was noted in the 2000 law, whenever the resources (teachers, aides, etc.) became available. The effectiveness of inclusion does not depend solely on the legislation and the curriculum proposed by the government, but also on the attitudes of key stakeholders toward the inclusion of children with special education needs—namely, teachers, parents, and peers.

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Attitudes of Greek Teachers toward Inclusion The limited number of studies that have been undertaken in Greece, primarily with teachers who do not have any experience working with children with special education needs, have revealed that Greek general education teachers are skeptical about inclusion. Padeliadou and Lambropoulou (1997) showed that mainstream teachers held neutral attitudes toward inclusion, but these were more positive than the attitudes of their special education counterparts. One year later, Karakoidas and Dimas (1998) showed that mainstream teachers held negative attitudes toward the inclusion of children with deafness, blindness, serious behavioral problems, and mild mental retardation. Although they acknowledged that inclusion could potentially enhance the children’s social skills, they disagreed with the widespread implementation of the policy until sufficient resources were in place and appropriate training was provided. Similar concerns were voiced in another recent survey of teachers in the region of Attica (Koutroumpa, Theodoropoulou, & Fotiadou, 2004). Although the teachers surveyed were generally positive toward the philosophy of inclusive education, they felt that they did not have the necessary knowledge and instructional skills to meet the needs of an increasingly diverse student population. The conclusion that can be drawn from these studies is that Greek teachers believe that the successful implementation of inclusive education depends on mainly on external factors, such as the provision of professional development courses to mainstream teaching staff, the availability of support from specialists, and the generous resourcing of schools. Another recent study carried out by Avramidis and Kalyva (2007) explored the influence of teaching experience and professional development on Greek teachers’ attitudes toward inclusion. Out of the 155 teachers who participated in the study, 39 were teaching in the inclusion units that were already described, and the remaining 116 were mainstream primary schoolteachers. They were asked to complete the “My Thinking About Inclusion” (MTAI) self-report instrument, a 28-item, 5-point, forced-choice Likert scale (Stoiber, Gettinger, & Goetz, 1998). The MTAI measures attitudes toward the following three main belief domains related to inclusion: core perspectives (12 items), expected outcomes (11 items), and classroom practices (5 items). The responses of the participants are presented in Table 4.2 and show that they held overall positive attitudes toward the inclusion of children with special education needs—with mainstream teachers holding more negative beliefs about core perspectives than special education teachers. The teachers were also asked to indicate the degree of accommodation required for the inclusion of children within 12 categories of impairment: speech problems, specific learning difficulty, mild learning difficulty, moderate learning difficulty, ADHD, visual impairment, hearing impairment, physical disability, emotional disorder, challenging behavior, brain injury/neurological disorder, and ASD. The teachers were then required to indicate their perceived level of preparedness in teaching children from the same categories in a full inclusive classroom setting (see Table 4.3). Finally, teachers were asked to rate the extent to which eight factors, such as limited knowledge or lack of experience, interfered with inclusion practices


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Table 4.2 Participants’ Mean Scores in the Three Domains and the Entire MTAI Scale Groups of Teachers Teachers schools with integration units Teachers from randomly selected schools Total

Core Perspectives

Expected Outcomes

Classroom Oractices

MTAI Total

39

M = 2.68 SD = 0.36

M = 2.43 SD = 0.31

M = 3.68 SD = 0.46

M = 2.76 SD = 0.23

116

M = 2.91 SD = 0.35

M = 2.39 SD = 0.38

M = 3.78 SD = 0.44

M = 2.86 SD = 0.29

155

M = 2.86 SD = 0.36

M = 2.40 SD = 0.37

M = 3.76 SD = 0.44

M = 2.84 SD = 0.28

N

Note: Low mean scores indicate positive attitudes.

Table 4.3 Degree of Accommodation and Level of Preparation According to Disability Preparation

Accommodation Type

Mean

SD

Rank

Mean

SD

Rank

Specific learning difficulty Mild cognitive difficulty Moderate cognitive difficulty Speech and language delay Physical/motor impairment ADHD Challenging behaviour Emotional disturbance Visual impairment Hearing impairment Autism/PDD Brain injury/neurological disorder

2.30 2.30 2.43 2.67 2.72 2.86 2.92 2.94 2.99 3.03 3.65 3.66

0.704 2.49 0.76 0.70 1.06 0.74 0.67 0.76 0.87 0.87 0.60 0.563

1 2 3 4 5 6 7 8 9 10 11 12

1.97 2.22 2.17 1.72 2.08 1.85 2.06 1.92 1.55 1.62 1.61 1.46

0.71 0.71 0.63 0.78 0.90 0.71 0.74 0.86 0.81 0.76 0.90 0.81

8 12 11 5 10 6 9 7 2 4 3 1

Notes: N = 155. Degree of accommodation was rated on 1–4 scale, where 1 = Little Accommodation, 2 = Minor Accommodation, 3 = Much Accommodation, and 4 = Major Accommodation. Teachers’ sense of preparation was recorded on a 1–4 scale, where 1 = Not Prepared, 2 = Somewhat Prepared, 3 = Very Prepared and 4 = Extremely Prepared.

and to rank 10 methods for improving inclusive practices in terms of their preference (see Tables 4.4 and 4.5). Kaderoglou (in progress b), in a small scale qualitative study, interviewed 20 teachers from the prefecture of Thessaloniki. Preliminary findings reveal that teachers with long or short experience but with no further qualifications or training in special needs education who worked in inclusion units expressed low expectations from inclusive practices, stating that the system fails due solely to external factors. “Inclusive practices are helping children

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Table 4.4

Mean Ratings for Barriers to Inclusion

Reason Lack of experience of integration Limited knowledge of special education field Insufficient support from school/community Limited time Parents’ attitudes Limited opportunities for collaboration Teachers’ attitudes Other parallel commitments

N

Mean

SD

155 155 155 155 155 155 155 155

3.15 3.15 3.08 3.07 3.03 3.01 2.94 2.69

0.76 0.80 0.80 0.67 0.79 0.66 0.87 0.86

Note: Degree that interfered with inclusion rated on a 1–4 scale, where 1 = does not and 4 = does extremely.

Table 4.5

Mean Rankings for Methods of Improving Inclusive Practices

Method Direct teaching experience with pupils with SEN In-service training (seminars) Attending courses at the university Observation of other teachers in inclusive settings Consultation with teachers, specialists, and parents Exposition to children with SEN Group discussions on integration practicalities Collaborative relationship with university staff Participation in research study/project Independent study

N

Mean

SD

155 155 155 155 155 155 155 155 155 155

3.61 4.02 4.43 4.72 4.88 5.78 5.87 6.25 6.60 8.87

2.82 2.49 2.95 2.09 2.52 2.45 2.34 2.59 2.47 1.80

Note: Items were ranked with 1 = most preferred method and 10 = least preferred method.

in their self-help skills and can make them a bit more sociable because they interact with their peers” (Teacher of inclusion unit with no special education needs qualifications). These teachers expressed that the cause of unsuccessful inclusion is either the child and the type or severity of his or her disability, or the lack of inservice training courses, as well as managerial and administrative issues. It was clear that although legislative terms have changed, philosophy, attitudes, and practices have not progressed (Kaderoglou, 2008): Of course I think it’s a matter of intelligence. When you have a child with an absolute absence of ability, when he can’t understand anything you say, there is no way I can help this child. (Teacher of inclusion unit with no special education needs qualifications) I don’t believe that inclusion works, because there is no specialized personnel . . . teachers, of course, trained for special education needs. I need better cooperation with CDAES and the school advisor, now we have no contact at all, I don’t get even a phone call from them. (Teacher of inclusion unit with no special education needs qualifications)


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I usually make a small group of special education needs students and help them in special areas of the curriculum but I don’t go with them in the general classroom. You know they go on their own, [sigh] . . . it’s not my responsibility. (Teacher of inclusion unit with no special education needs qualifications)

Interestingly, the same pattern existed for teachers of general education that had collaborated with unqualified personnel in special education needs posts. The following are interview vignettes from teachers in the general education sector from schools with an inclusion unit run by an unqualified special education needs teacher. External factors such as the type and degree of disability, lack of in-service training courses, and administrational issues emerged as consistent patterns in the data (Kaderoglou, 2008). Inclusion can work only with certain presuppositions. I mean that it has to do with the child’s level of disability but also with the administration, not the school’s, I mean the administration of the local Education Office, errrr, also time, we are up to our neck, there is no time to be as you should with a special student. (Teacher of general education) We have to consider that we don’t have the necessary knowledge and furthermore we are pressurized by time frames and curricula that have to be delivered. (Teacher of general education)

Low expectations and sense of helplessness on behalf of the general education teachers were reported. The only thing that a child with special education needs can gain [from inclusion] is in socializing and maybe the acceptance of the other children. (Teacher of general education) I feel totally unable to help children with moderate or severe mental retardation. Whatever I do, I cannot help. . . . When you have a child who acts like an alien . . . it is very difficult. (Teacher of general education)

One strong emerging pattern is about the need for guidance and close cooperation of the general class teacher with the inclusion unit teacher (Kaderoglou, 2008). You know we (general education teachers) also make the mistake to marginalize some children with the very first incident, for example it could be a child with some immaturity who eventually could be helped in the general classroom, that’s why I need more instruction on what to do and a closer relationship with the special education needs teacher, emmm, he could help me personalize my teaching. (Teacher of general education) I need some level of guidance from our inclusion unit teacher. We have to know some ways of dealing with these children. (Teacher of general education)

In accordance to the findings of Avramidis and Kalyva (2007), Kaderoglou (2008) stressed that teachers of general education who collaborated with qualified and experienced special needs educators valued in-service training and seminars, direct observation of their specialized peers in inclusive settings, and close collaboration with them and the parents as methods of improving

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their inclusion practices. Teachers who collaborated with unqualified special education teachers also valued in-service training and seminars but demonstrated a need for consultation with experts: “I often asked from the school principal to get us Mr. X or Mrs. Z [national experts on learning disabilities], so that these people would talk to us and show us what to do” (Teacher of general classroom collaborating with a teacher without special education needs qualification).2 In contrast, well-qualified special education needs inclusion unit teachers reported. Internal motivation and personality qualities were more important to the process of inclusion than funding, expertise, administrational or other external factors. The following examples are illustrative of this pattern (Kaderoglou, in progress b). Inclusion works every time the special education needs teacher pays attention to the idea and the necessary practices for inclusion in order to promote them and advocate for them both towards other teachers, other parents and other children. Inclusion does not happen; you need to make your own initiatives and interventions at all levels. (Qualified special education needs teacher) I try to listen to my colleagues’ needs and then I try to take into consideration their priorities and wishes before I start designing any kind of intervention for a child. The same of course, and it is of immense importance, you have to do the same with the parents of the child. As time goes by you tend to get closer as persons actively helping and cooperating with each other. (Qualified special education needs teacher) I believe in the unique personality of the teacher that is in charge on an inclusion unit and I feel that the degree of success (of the students’ inclusion) is very much dependent to his/her personal efforts. (Qualified special education needs teacher)

Equally, teachers of the general class who had been cooperating with qualified and experienced special education needs teachers reported successful inclusion stories, reflecting a kind of school ethos that was based on mutual cooperation and acceptance of individuality (Kaderoglou, in progress b). (Inclusion) is a matter of personal responsibility, both in inclusion units and general education classes. Trust is the very first thing that you have to build on in terms of dealing with the student and his/her parents as well. Good quality relationships with the special education needs teacher are also a key to success. (Teacher of general education) I think that the success depends on three chain links that have to become strong through mutual respect, acceptance, and cooperation. I mean the special education needs teacher, me, as the teacher of the general class, and the parent. (Teacher of general education)

Successful inclusive practices appear to depend on both internal factors and personality traits of the educator as well as adequate resources (Kaderoglou, in progress b). Teachers’ positive feedback about inclusion seemed to be related to the type and degree of special education needs of their students. In concordance to


55

the findings of Avramidis and Kalyva (2007), Kaderoglou found that mild and moderate disability were celebrated, whereas profound and multiple disabilities like neurological problems and ASD produced positive, but much more skeptical responses both by qualified special needs educators and teachers from the general education sector (in progress b). The severe types of special education needs were recorded as unsuitable for inclusion by unqualified special education needs teachers and their peers in general education.

Attitudes of Greek Parents toward Inclusion In Greece, only two studies have explored the attitudes of parents of typically developing primary schoolchildren toward the inclusion of children with special education needs. Both studies were conducted before the implementation of the law 2817 about inclusion in 2000. More specifically, Besevegis, Kalatzi-Azizi, and Zoniou-Sideri (1997) attempted to identify the attitudes and the knowledge of parents of typically developing children toward the inclusion of children with special education needs and found that parents expressed a positive disposition toward a potential personal interaction with a child with special educational needs. They were less positive, however, toward allowing their child to interact with a child with special educational needs; they expressed reservations about a closer contact with the child with special education needs. Patsalis (1994), who conducted a similar study, concluded that most Greek parents supported the inclusion only of children with mild disabilities. Tafa and Manolitsis (2003) reported that parents of typically developing preschool children held overall positive beliefs about inclusion regardless of their age and gender. This finding contradicted that of Besevegis et al. (1997) who found that younger parents were more positive than older ones and that women were more positive than men. These contradictory results could be attributed largely to the time delay between the studies, during which inclusive practices became more established in Greece. Kalyva, Georgiadi, and Tsakiris (2007) published the most recent study on the attitudes of Greek parents of typically developing primary school children toward inclusion. The participants were 182 fathers and 156 mothers, who completed the MTAI self-report instrument (Stoiber et al., 1998) (see Table 4.6). The parents expressed similar beliefs to the teachers. They were also positive comments made about inclusion. Fathers were more positive

Table 4.6 Parents of Typically Developing Primary Schoolchildren Mean Scores in the Three Domains and the Entire MTAI Scale Attitudes Core perspectivesª Expected outcomesª Classroom practicesa Whole scaleª

Fathers M(SD)

Mothers M (SD)

F

Total M (SD)

12.23 (2.01) 8.16 (1.86) 4.07 (1.61) 24.46 (3.72)

12.90 (2.07) 8.74 (1.69) 5.05 (1.42) 26.69 (3.53)

9.63* 7.53* 30.38* 29.09*

12.54 (2.06) 8.43 (1.80) 4.52 (1.60) 25.49 (3.79)

Note: ªLower scores indicate more positive attitudes; *p < 0.05.

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than mothers in their overall attitudes towards inclusion, but they were less willing to engage themselves or their children in interaction with a child with special education needs. Only one small qualitative study has been conducted about the attitudes of parents of children with special education needs towards the inclusion of their children. For each of six types of disability, Kaderoglou interviewed 3 parents (i.e., 18 interviews) from the city of Thessaloniki,3 using a semistructured interview based on the questionnaires used by Kalyva et al. (2007). Emerging patterns indicated that although inclusion was favorable for all parents, interpretation of the term differed according to the type and degree of disability. Parents of children with specific learning difficulties and parents with children with ADHD and/or behavior problems reported that there was no such thing as inclusion for their children. They advocated that their children should be helped in the general education class along with their peers and that all teachers should have the necessary knowledge to accommodate their differentiated learning style or to manage their difficult behavior. Furthermore, they were not inclined to redirect their child to any other forms of educational support, even in cases where they felt that the existing educational services totally failed to meet their children’s needs (Kaderoglou, in progress a). For me inclusion depends “upon” the abilities of the teacher. Teachers (of general education) are not prepared at all and their practices do not facilitate education as a right of every child, they just go for the medium norm. I think they are not aware at all what inclusion means. (Parent of a child with specific learning difficulties)

Parents chose to shift their expectations for their children’s progress away from the school. The school was thought of as useless, and parental expectations lay in the hands of “experts from the private sector” who undertook therapeutic interventions (Kaderoglou, in progress a). “I don’t believe he’s getting anywhere under this climate (in the school). I just try to make things work for him through his private sessions with Mrs. H and Mr. K. I don’t bother with the school anymore” (Parent of a child with ADHD and behavior problems). Some parents who have children with sensory problems (visual impairment or deafness) advocated for their children’s right for meaningful education in the ordinary classroom, whereas others preferred “the security of a highly specialized provision” (Kaderoglou, in progress a): “I believe in her right to be educated at her neighborhood school. That is what we longed for since we had the [cochlear] implant. The system has to find ways to facilitate her learning with the best possible way. It is not for me to say what they should do, all I know is that it is my daughter’s right.” Parents of children with mental retardation of moderate to severe degree tended to prefer a specialized school setting, whereas other parents declared their right for inclusive schooling regardless of the child’s level of coping in the ordinary school. A. needs to be in a special school because no one can address his specific needs in an ordinary school. The education he would receive is much more meaningful


57

and people are trained especially for children like mine but I had no alternative as there are only two special schools in my district and they are packed with children. (Parent of a child with profound mental retardation) My [child’s name] is progressing slowly but I am very happy for everything he has achieved in his school. Children love him and care for him. I wouldn’t want it any other way. (Parent of a child with Down syndrome)

Parents of children with ASD all advocated for inclusive schooling, but at the same time were furious about the services they received from inclusion units. “I don’t need an inclusion class. It will not make any difference for my child. We’ve tried that and it was a disaster. We got no meaningful support for his unique needs” (Parent of a child with ASD placed in an inclusion unit). Parents of children with ASD demanded their child’s right for parallel support in the general classroom (one special education needs teacher shadowing the child in the general classroom on a full-time basis) in accordance with the provision in law 2817/2000: “It is my legal right to have my child placed in the school I want. He gets parallel support from day one, but the whole school community has helped our struggle in order to get this kind of help. We were really lucky and we are grateful for that” (Parent of a child with ASD who has parallel support in general education). Some parents preferred to enroll their child in a general education class with “a sensitive teacher who accepts the child” (parent of a child with moderate ASD) with no further support (Kaderoglou, in progress a): I don’t expect anything more from him. He [the teacher] is so kind and has shown to M so much acceptance. I am very careful not to ask for anything more because we are in this position . . . we don’t really belong there, they are doing us . . . [sobs] a big favor. (Parent of a child with ASD in general education with no form of support)

Overall, Kaderoglou concluded that the attitude toward inclusion and its interpretation on behalf of the parents of children with special education needs varies a lot. This is still an unexplored field that needs further research to examine these emerging patterns.

Attitudes of Greek Peers toward Inclusion Research on the attitudes of typically developing children toward the inclusion of children with special education needs was conducted mainly after the implementation of the law of 2000, when more children with special education needs started being educated in the same setting as their peers without special education needs. Two of the studies were conducted by Nikolaraizi and colleagues (Nikolaraizi & deReybekeil, 2001; Nikolaraizi et al., 2005) who compared the attitudes of Greek typically developing children with those of children from United Kingdom and United States, respectively—where inclusion has been implemented for a longer period of time—and found that Greek children were equally or even more accepting of children with disabilities than their peers from the other two countries. Magiati, Dockrell, and

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Logotheti (2002) found that Greek children aged 8 to 11 years old held overall positive attitudes toward educational inclusion and could differentiate between diverse kinds of disabilities.

CONCLUSION A contextual and experiential overview of the current practice of inclusion reflects some serious problems in its implementation. In Greece research illustrates a deep division between general and special education. Changes to the current system are necessary to facilitate the inclusion of students with disabilities into the mainstream more effectively. For inclusion to work and achieve its potential, there needs to be an extensive discussion among the school, the district, and the community. Given the fact that inclusion in Greece is such a new concept and still in progress, it is imperative that all stakeholders are involved in the decision-making processes toward the restructuring of the current response system for students with diverse educational needs. It is evident that the Greek administration is taking active steps to reestablish the current special education system, but the efforts have overlooked a variety of structural and cultural factors that are essential for inclusion to work. Throughout the special education reform efforts, one can see the fragmented nature of the attempts to put systems in place that will be responsive to students’ needs and promote more democratic schools. For inclusion to be successful, the planning, implementation, and sustainability of the education system needs to be inclusive as well. The fact that inclusion is so new in the Greek educational framework presents both challenges to be addressed and opportunities to expand the existing resources with a fresh mindset. It is a task that is long overdue for all the children and their parents who have been patiently waiting for something to change. Some parents feel grateful for even having the basic provisions for their children, which confirms the findings from other research (Tafa & Manolitsis, 2003; Vlachou, 2004). The articulation of rights and equal opportunities is abstract and therefore easily disconnected from the reality of what any child is entitled to in order to live life to the fullest. The highly politically contested field of education in Greece fails to promote inclusion as part of the wider cultural change based on the values of equity and justice. The need for increased funding for teacher training and rigorous research especially in the area of student outcomes is pressing. The disconnection between urban and rural areas in inclusive practices is alarming, along with the lack of parent involvement and empowerment in the process. The deficit approach to inclusion and the “charity” provision of services perpetuate outdated segregation beliefs and trivialize the true meaning of inclusion as a tool that is integral in the development of a democratic society that cares for all its people, with or without disabilities. Jorgensen (2000) called inclusion unique as an educational innovation in that it requires people and societies to “make radical changes not only in their beliefs about the value of people whose contributions are not self-evident but also in the basic assumptions that underlie learning and teaching” (p. 167). The current chapter has confirmed


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that reform in Greece will not be successful until new perceptions are introduced and incorporated into the thinking and translated into actions of the change agents.

NOTES 1. Kaderoglou, E. (2007). Protaseis gia tin sxoliki stegi kai tin Eidiki Agogi [Proposals for school housing and special education]. Unpublished official document of proposals on behalf of the Hellenic Union of Special Educators delivered to vice governor of Thessaloniki prefecture responsible for school housing. Available on request from the author. 2. Kaderoglou, E. (In progress b). When inclusion does happen? Possible factors that can contribute to the rise of the “school for the person.” Unpublished study in progress. Hellenic Union of Special Educators. Available on request from the author. 3. Kaderoglou, E. (In progress a). Exploring Greek parents’ attitudes towards the school inclusion of their children with special education needs. Unpublished study in progress. Hellenic Union of Special Educators. Available on request from the author.

REFERENCES Avramidis, E., & Kalyva, E. (2007). The influence of teaching experience and professional development on Greek teachers’ attitudes towards inclusion. European Journal of Special Needs Education, 22, 267–389. Baker, E. T., Wang, M. C., & Walberg, H. J. (1994). The effects of inclusion on learning. Educational Leadership, 52, 33–35. Besevegis, E., Kalatzi-Azizi., A., & Zoniou-Sideri, A. (1997). Apopsis ke stasis goneon fisiologikon paidion apenadi se pedia me idikes anages [Attitudes and beliefs of parents of typically developing children towards children with special needs]. In M. Kaila, N. Polemikos, & G. Philippou (Eds.), Atoma me idikes anages [People with special needs], 2nd ed. (pp. 706–711) Athens: Ellinika Grammata. Cole, D., & Meyer, L. (1991). Social integration and severe disabilities: A longitudinal analysis of child outcomes. Journal of Special Education, 25, 340–351. Efstathiou, M. (2003). Educational and social inclusion of children with special educational needs. Topics in Special Education, 20, 23–29. European Union Commission. (2006). The education system in Greece. Directorate General for Education and Culture. Retrieved on December 6, 2007, from www .eurydice.org/portal/page/portal/Eurydice/EuryCountry. Greek Government. (1985). Official Journal, no. 1566/1985, FEK 167/30-9-1985. Athens: Ethniko Typografeio. Greek Government. (2000). Official Journal, no. 2817/2000, FEK 78/14-3-2000. Athens: Ethniko Typografeio. Jorgensen, C. (2000). High-school inclusion in New Hampshire. In J. Nisbet & D. Hagner (Eds.), Part of the community (pp. 131–176). Baltimore: Brookes. Kaderoglou, E., Bakirtzis, K., Trikaliotis, I., Stavropoulos, V., Foustana, A., Takaridis, S., et al. (2007). Skepseis protaseis kai provlimatismoi tis Panellinias Enosis Eidikon Pedagogon sxetika me to neo nomosxedio gia tin Eidiki Agogi [Thoughts, proposals and questioning of the Hellenic Union of Special Educators regarding the new draft of the Law for Special Education provision]. Retrieved February 20, 2008, from www.specialeducation.gr/files/peep_2007.doc. Kaderoglou, E., Bakirtzis, K., Trikaliotis, I., Stavropoulos, V., Takaridis, S., Thomou, A., et al. (2006). Skepseis protaseis kai provlimatismoi tis Panellinias Enosis Eidikon

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Pedagogon sxetika me to neo nomosxedio gia tin Eidiki Agogi [Thoughts, proposals and questioning of the Hellenic Union of Special Educators regarding the new draft of the Law for Special Education provision]. Retrieved February 10, 2008, from www.specialeducation.gr/files/theseis_peep.doc. Kaderoglou, E., & Drossinou, M. (2005). Early intervention services in Greece. In M. Guralnick (Ed.), The developmental systems approach to early intervention. Baltimore, MD: Brookes. Kalyva, E., Georgiadi, M., & Tsakiris, V. (2007). Attitudes of Greek parents of primary school children without special educational needs towards inclusion. European Journal of Special Needs Education, 22, 295–305. Karakoidas, K., & Dimas, L. (1998). A study of educational inclusion of children with special educational needs. Topics in Special Education, 1, 8–19. Karapanagiotou, M., Michaelidou, M., Palaska, M., & Pantazopoulou, M. (2006). Assessment project country report: Greece. Directorate General for Education and Culture. Retrieved December 6, 2007, from www.eurydice.org/portal/page/ portal/Eurydice/EuryCountry. Koutroumpa, K., Theodoropoulou, E., & Fotiadou, M. (2004). Teachers’ attitudes toward “full inclusion” of students with special educational needs in the region of Attika, Greece. Paper presented at the European Dimension of Special Education Conference, November 19–21, Thessaloniki. Lipsky, D. K., & Gartner, A. (1989). Beyond special education: Quality education for all. Baltimore, MD: Brookes. Lovett, H. (2000). Supporting students with emotional disabilities in general education classrooms. In J. Nisbet & D. Hagner (Eds.), Part of the community (pp. 107–130). Baltimore, MD: Brookes. Magiati, I., Dockrell, J. E., & Logotheti, A. E. (2002). Young children’s understanding of disabilities: The influence of development, context, and cognition. Journal of Applied Developmental Psychology, 23, 409–430. Ministry of National Education and Religious Affairs. (2008). Pre and primary education statistics. Retrieved December 1, 2008, from www.ypepth.gr. Nikolaraizi, M., & DeReybekiel, N. (2001). A comparative study of children’s attitudes towards deaf children, children with wheelchairs and blind children in Greece and in the UK. European Journal of Special Needs Education, 16, 167–182. Nikoloraizi, M., Kumar, P., Favazza, P., Sideridis, G., Koulousiou, D., & Riall, A. (2005). A cross-cultural examination of typically developing children’s attitudes towards individuals with special needs. International Journal of Disability, Development and Education, 52, 101–119. Padeliadou, S., & Lambropoulou, V. (1997). Attitudes of special and regular education teachers towards integration. European Journal of Special Needs Education, 12, 173–183. Patsalis, C. (1994). I ensomatosi ton paidion me idikes anages sto kanoniko sholio [The inclusion of children with special needs in the general school]. Educational Community, 26, 22–33. Special Education Directorate of the Ministry of National Education and Religious Affairs. (2008) Anafora Pepragmenon 2004–2007 [Report for the years 2004– 2007]. Retrieved December 2, 2007, from www.alfavita.gr. Stasinos, D. (1991). I idiki ekpaidefsi stin Ellada [Special needs education in Greece]. Athens: Gutenberg. Staub, D., & Peck, C. A. (1995). What are the outcomes for non-disabled students? Educational Leadership, 52(4), 36–40. Stefa, A. (2001). Practices of inclusion and integration in mainstream schools: A critical approach. Topics in Special Education, 15, 70–74.


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Stefanidis, F. (2008). The new draft of the Law for Special Education. Retrieved December 2, 2007, from www.specialeducation.grfiles/se_2007_new.pdf. Stoiber, K. C., Gettinger, M., & Goetz, D. (1998). Exploring factors influencing parents’ and early childhood practitioners’ beliefs about inclusion. Early Childhood Research Quarterly, 13, 107–124. Tafa, E., & Manolitsis, G. (2003). Attitudes of Greek parents of typically developing kindergarten children towards inclusive education. European Journal of Special Needs Education, 18, 155–171. UNESCO. (1994). The Salamanca statement for special/inclusive education: A framework for action. Adopted by the World Conference on Special Needs Education, Access and Quality. Salamanca, Spain, June 7–10. Vlachou, A. (2004). Education and inclusive policy-making: Implications for research and practice. International Journal of Inclusive Education, 8, 3–21. Vlachou, A. (2006). Role of special support teachers in Greek primary schools: A counterproductive effect of “inclusion” practices. International Journal of Inclusive Education, 10, 39–58. Xiromeriti, A. (1997). Idiki agogi: Theoritikes arhes, erevnitika dedomena ke didaktikes paremvasis [Special needs education: Theoretical principles, research data, and educational interventions]. Patra: University of Patra. Zoniou-Sideri, A., Karagianni, P., Deropoulou-Derou, E., & Spandagou, I. (2005). Inclusive classes in Greece: New names, old institutions. Paper presented at Inclusive and Supportive Education Congress (ISEC), August 1–4, Glasgow.


CHAPTER 5

Vocational Rehabilitation at a Cancer Agency in Canada: A Pioneer and Model Service When Cancer Results in Disability Maureen Parkinson

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s early detection and treatment improve, more cancer patients are surviving, remaining cancer-free longer, and making up a significantly greater proportion of the population. With cancer survivorship in Canada representing approximately 3 percent of the population, it is estimated that 66 percent of adults diagnosed today will be alive 5 years from now and 75 percent of children diagnosed today will survive another 10 years (Carlson, 2008). It is also estimated that 40 percent of cancer survivors are of working age (Short, Vasey, & Tunceli, 2005). Although survivors may want to return to their work, the impact of cancer and its treatment can leave some with functional disabilities that impact their employability (Short et al., 2005). The demand for vocational rehabilitation (VR) and counseling has therefore grown. In response to this demand, there has been increasing research conducted to set guidelines in the field, but there is little research on actual VR interventions and the impact on people with cancer (Verbeek & Spelten, 2007). With a VR program in place since 1994, the British Columbia (B.C.) Cancer Agency is in a unique position as a model program to help fill the knowledge gap. In this chapter, the development of a practice model for VR services that has been developed in the context of a provincial government cancer treatment center is described. This service model responds to the issues that cancer patients experience when returning to work. It is also based on the evidence that some cancers may require more intervention than others. The chapter includes practice-based information that supports individual cancer survivors in managing their work-related issues and also provides detail regarding the development of the VR program in the hopes that such

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information can serve as model for the development of similar programs in other cancer centers around the world.

THE IMPACT OF CANCER ON EMPLOYMENT: A ROLE FOR VOCATIONAL REHABILITATION The cancer experience often has a profound existential impact on a person’s life and may lead to self reevaluation, particularly when the disease is life threatening or leads to a shortened span of life. When facing the gravity of the disease, it’s not unusual for people to question their values, including those related to work, and the career path they had chosen. Of 378 survivors of breast cancer who had returned to work; Stewart et al. (2001) found that approximately 41 percent felt they had altered priorities and ambitions in relation to work as a result of their cancer. VR counselors can play an important role in helping cancer survivors rediscover meaning through work or in identifying other meaningful leisure or recreational activities that can replace work. Vocational assessment can be helpful in clarifying core strengths and interests, especially for those clients who would like to look at an alternative career path. Counseling provides clients with the opportunity to look at their role in the workplace, reevaluate the expectations of self and others, and build self-esteem and communication skills. Following cancer, it is not unusual for some clients to seek to alter lifestyle factors that they believe may have contributed to their cancer; they may see workplace stress as having somehow contributed. Although no solid research links stress to cancer, many survivors do believe that stress has been a contributing factor (Magee & Scalzo, 2006). Even when the link between workplace stress and their cancer remains unclear in their minds, clients are often moved to pursue a better, less stressful quality of life. Counselors can help address these concerns by encouraging their clients to explore risk factors with their oncologists. More directly, counselors can help their clients identify stressors and manage stress through cognitive behavioral and relaxation techniques. Such techniques help in the reinterpretation of perceived stressors and better coping with stress, including in the workplace.

Emotional Distress Research has shown that psychosocial and emotional distress is a significant problem for one third to one half of all cancer patients, and psychosocial interventions can be helpful in alleviating distress levels in patients and lead to improved medical outcomes (Carlson & Bultz, 2002). Vocational counseling involves assessing the level of distress (defined as anxiety and depression), its likely impact on the ability to return to work, and assisting in its treatment. It is not unusual to find that clients have misinterpreted fatigue or cognitive problems as being a sign of “chemo-brain” (i.e., caused by chemotherapy) when the root cause is undiagnosed (and therefore untreated) depression. Emotional well-being is clearly a key factor in a cancer survivor’s successful

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return to the workplace. A proactive approach to negative emotional factors on the part of both counselor and client is therefore essential.

Fatigue Fatigue is one of the most common symptoms experienced by patients with cancer (Physical symptom management: Fatigue, 2006). There can be multiple factors contributing to fatigue, including pain, anemia, sleep disturbance, activity level, depression, and nutrition, so its treatment often requires a multidimensional and interdisciplinary approach. The unpredictability of when or even whether a survivor will recover from fatigue poses a challenge in planning a return to work. Addressing the problem of fatigue, therefore, requires flexibility and an individualized approach, which is the basis of VR. The issue of fatigue and the return to work is particularly difficult for cancer survivors with physically demanding jobs. Survivors who have suffered some physical impairment and whose work requires manual labor have comparatively more difficulty returning to work (Spelten, Sprangers, & Verbeek, 2002). Cancer survivors with physically demanding jobs therefore were found to have higher rates of disability (Short et al., 2005). Indeed, studies have shown that fatigue level in general is predictive of the ability to return to work (Spelten et al., 2002). Fatigue can be very difficult to quantify, however, resulting in disagreements between patients, doctors, and insurance providers about how fatigue impacts on the ability to work. Such disagreements can spur a referral to the VR counselor to provide counseling and advocacy. VR counseling is well suited to address issues of fatigue. The first step is to encourage patients to explore all medical means to address fatigue. The next step is to explore whether any further measures might be taken to improve physical conditioning, properly assess energy levels, manage fatigue, or ameliorate the situation in some other way. If it seems useful, the cancer survivor in consultation with his or her physician is encouraged to try a program of mild conditioning exercise. Increasingly research has shown some promising results in using such exercise to help counter the side effects of cancer and its treatment. Although more research needs to be done on the benefits of exercise and return to work, it would appear to at least result in a general improvement in conditioning, and in perhaps a feeling of empowerment. In some cases, VR counselors will advocate for an insurance provider to pay for a work assessment or work hardening program. Such programs systematically assess a worker’s readiness to return to a particular job and provide a supervised exercise program designed to bring his or her condition up to the level required. Some of the more innovative programs provide a personal trainer. However, there is currently no public funding in British Columbia for these work hardening programs. Private insurers rarely fund employability assessments or work hardening programs for cancer survivors despite the presence of funding for similar programs for workers with other disabilities, such as back injuries. This decision may be based on the assumption that fatigue resulting from cancer and its treatment tends to resolve over time. Yet given the potentially significant benefits of systematic exercise to cancer recovery, such programs may save costs in the long run by encouraging a quicker return

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to work. Cancer patients are often reluctant to approach their insurance carrier for work hardening programs and choose instead to implement their own exercise programs rather than risk the conditions the insurer might impose. Physicians typically support a graduated return to work for cancer patients, so they can recover their work conditioning over time on the job. Employers have some obligation to accommodate this graduated return to work for their employees. Patients are encouraged to discuss their state of fatigue with their physicians so that together they can agree on a graduated return to a full work schedule.

Permanent Physical Disability In some cases, cancer survivors are left with a permanent disability. Vocational counseling includes an assessment of whether adaptive aids or modified work conditions and tasks might facilitate a return to the job. If such changes are not helpful, then VR counselors will explore the possibility of a different job with the same employer or a new employer. Some cancer survivors may not want to change employers for fear of losing their insurance benefits (life insurance, long-term disability, prescription coverage). Fortunately, basic medical insurance in Canada is not employerfunded, and preexisting medical conditions have no bearing on this coverage. Private insurance, however, such as long-term disability and life insurance, may have a clause about the exclusion of preexisting medical conditions, making insurance harder or more expensive to obtain following cancer. This factor can have a significant impact on employment outcomes following cancer. Further, it is often much easier to return to the familiar setting of the existing workplace and fellow workers, rather than facing the uncertainty of looking for new employment. If retraining is necessary, either to learn a new job or to change employers, a VR counselor can help the client weigh up the options available and locate funding to support that training, whether through private insurance or through provincial or federal programs. Counseling can help clients set practical employment goals within the confines of available funding, and so help provide them with some sense of control over their future. The counselor can also help clients identify and develop their career plans, including both a short-term strategy—involving perhaps a vocational training program—and a longer term strategy aimed at fulfilling their ultimate career goals.

Cognitive Deficits Cognitive deficits may occur as a result of treatment or from the tumor itself (Taphoorn & Klein, 2004). Brain cancer survivors present the highest risk of disability and the highest rate of job loss as a result of their cancer (Short et al., 2005). Research has shown that survivors of malignant brain tumors have higher rates of work limitations and time away from work compared to noncancer patients (Feuerstein, Hansen, Calvio, Johnson, & Ronquillo, 2007). In a review of client referrals to an outpatient acquired brain injury hospital for VR (Metcalf & Parkinson, 2006), every client reported at least three cognitive


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impairments in the areas of multitasking, memory, language, attention, word finding, concentration, or speech. Although some studies have shown encouraging results in the rehabilitation of brain cancer survivors (Cole, Scialla, & Bednarz, 2000; Huang, Cifu, & Keyser-Marcus, 1998), it is rare for survivors to be referred on to outpatient rehabilitation programs. One study found that none of the survivors of malignant glioma had been referred on to rehabilitation (Davies, Hall, & Clarke, 2003). Despite this low referral rate, one of the few postacute rehabilitation studies revealed increased independence and productivity for those survivors who were referred to a postacute rehabilitation program (Sherer, Meyers, & Bergloff, 1997). For some cancer patients, chemotherapy causes cognitive decline, especially in psychomotor processing speed and verbal memory, but other factors, including depression, anxiety, sleep disturbance, and fatigue, can also contribute to these problems. As a result, it is difficult to predict which patients will be affected by cognitive deficits and for how long. It is also difficult to determine whether cognitive decline is temporary or permanent. This situation presents a challenge for VR, but one it is well-equipped to manage. Clients that report chemotherapy-related cognitive dysfunction and are concerned about their ability to perform at work, should be referred to a VR counselor. The counselor would assess anxiety and depression and refer to a psychiatrist if necessary. At the same time, the counselor would encourage the clients to fully explore with their physicians the possible involvement of other medical causes for cognitive dysfunction. Once it was determined that chemotherapy was the likely cause of cognitive dysfunction, counselors would apply a similar rehabilitation model to that designed for traumatic brain injury (i.e., neuropsychological assessment to quantify the degree of cognitive change, occupational therapy to build compensatory strategies and workplace modifications to offset any cognitive dysfunction). Unfortunately, there are few resources in Canada available for this kind of assessment and treatment following cancer. There are no provincially or federally funded programs for VR, largely due to the difficulty determining whether cognitive dysfunction is permanent. Neuropsychological assessments are difficult to obtain through the public health care system. Chemotherapyrelated cognitive dysfunction is not yet adequately researched, so neuropsychologists may lack the necessary knowledge base to assess the nuances of this condition.

The Issue of Human and Employee Rights Fear of disclosure of cancer at the workplace is not unusual for cancer survivors, and there is no clear direction on the most beneficial approach (Maunsell, Brisson, Dubois, Lauzier, & Fraser, 1999; Stewart et al., 2001). Deciding about whether to disclose, how, and to whom must be considered on a caseby-case basis. VR counselors can make cancer survivors aware of their rights and obligations in this area and direct them when necessary to advocacy groups like the B.C. Human Rights Coalition. Often, referrals to VR counselors are

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related to fears of job discrimination. Fortunately, because medical insurance is publicly funded and not employer funded, there is not a financial disincentive to hire someone with a history of cancer. However, discrimination based on disability or history of cancer can occur. In these instances, VR counselors can be helpful to survivors who are uncertain about whether to take legal action. VR counselors can also assist survivors in managing the psychological impact of legal action and support them to cope with the resolution. Other aspects of vocational counseling can be helpful in heading off potential employment problems. For instance, VR counselors can provide coaching about how to handle interview questions and in how to write job applications that address their health issues appropriately. The following information (Parkinson, 2005) was originally written for the newsletter Abreast in the West to provide guidance on the issue of disclosure of cancer for survivors in the workplace.

DISCLOSING YOUR CANCER EXPERIENCE AT WORK Your decision to disclose your breast cancer history to co-workers depends solely on you. You have no legal obligation to tell anyone about your cancer unless it interferes with your ability to work. What you disclose will depend on your work environment, your culture, your relationship with others, and your fundamental feelings about the situation. While in most cases disclosure will improve your work situation, in some cases it can make things worse. Only you can decide whether it is the right thing to do. However, there are some compelling reasons to bring co-workers into your confidence. They may wonder about your changes in mood and behavior and the extra time off you have been taking and fill in the gaps with rumors. As well, not disclosing to others may lead you to put up a false front, and maintain a degree of self-composure that only masks very stressful times. By holding back, you may be depriving yourself of useful support that only your co-workers can give you. Probably the best place to start is by informing your employer. If you need to take time off work, or your work performance is affected, your employer can cooperate to make life easier during treatment, recovery, and return to work. Your employer doesn’t need to know the specific details of your cancer, but only how it might impact your ability to do your job. By law, an employer must “reasonably accommodate” an employee who is experiencing health challenges, but the employee in turn needs to disclose what those challenges are. Your employer can also help explain the accommodations that you need to co-workers, and ensure that they respond appropriately, but should not disclose personal information without your consent. An employer may not terminate your employment, or otherwise unilaterally change the terms of your employment (i.e., reduce your salary or benefits or demote you) on the basis of a mental or physical disability. Such actions on the part of your employer would amount to discriminatory conduct under the B.C. Human Rights Code, and you would be entitled to lodge a complaint with the B.C. Human Rights Tribunal. You could also seek remedies in court, if you felt that you were wrongfully or constructively dismissed from your employment. If you live in other provinces, you might want to check the legislation to clarify your rights and what actions you can take.


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If you are concerned about talking directly to your employer, it can be helpful to enlist the services of someone from your company’s Human Resources/ Personnel department. She or he will likely be quite knowledgeable about the employer’s responsibilities and may be in the position to coach the employer accordingly. If your company does not have a human resources department, and you are concerned about discrimination on the basis of mental or physical disability, you may want to consult with your union representative (if you have one at your workplace), B.C. Human Rights Coalition (1-877-689-8474, 604689-8474), or even a lawyer. They can help you to at least understand your rights. While you certainly don’t want start negotiations with your employer by reciting legislation, it never hurts to know your rights and how to protect yourself. The exact method for disclosing to others is again a very personal decision. You may prefer to speak face-to-face, or by telephone, or by having a third person act on your behalf. However if you proceed, it’s important to review what it is you would like to communicate. Once you’ve spoken to your employer, you can also ask him or her to disclose on your behalf and to set the tone on how you would like to be treated. Your employer may be interested in setting up an educational session for employees with specialists to answer questions related to cancer to address any misconceptions or prejudices co-workers might have. Alternatively, you might ask a trusted co-worker to be your spokesperson and your advocate at the workplace. Don’t feel obligated to talk to co-workers you don’t have a good relationship with or who you don’t feel are likely to be supportive. Sometimes co-workers will feel uncomfortable with your situation or won’t know how to act. Guidance from you up front will help them feel more at ease. It’s important as well to plan what you want to say about your cancer when you return to work. Some cancer survivors don’t want to speak at all about their cancer for fear that they might become emotional or will be seen differently by their co-workers. Others prefer to be open and frank with others in an effort to educate and get support. As well, it’s important to remember that every person’s experience with cancer is unique and the uniqueness of your experience may be difficult to explain to your co-workers. This can be a source of disappointment, but it’s best not to take this lack of understanding personally— difficult as that can sometimes be. You might be the first cancer survivor at the workplace, but not likely the last. In some cases you might be the mentor for future cancer patients at your workplace. If you are hoping to return to work after recovering from treatment, it’s a great help to stay connected with your workplace by telephone calls, lunch dates and by attending work-related social gatherings. Such contacts keep you in the minds of your co-workers and strengthen the expectation that you’ll be returning to work. Maintaining contact will also help reduce any anxiety you might be feeling about returning to work.1

DEVELOPMENT OF A MODEL VR PROGRAM WITHIN A PSYCHO-ONCOLOGY TEAM The B.C. Cancer Agency offers a broad range of services in counseling and psychiatry to address anxiety and depression, including individualized counseling, relaxation groups, and mindfulness-based stress reduction education sessions. Survivors and individuals in treatment are encouraged to access these

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programs designed to empower them by teaching them new coping skills. As a significant proportion of people undergoing cancer experience psychological distress (Carlson & Bultz, 2002), this foundation in counseling was indeed critical. At the same time, however, cancer and its treatments can leave people with temporary or permanent work-related disability (Short et al., 2005). When the B.C. Cancer Agency began to offer VR service in 1994, it was the first service of its type at a cancer center in Canada. The VR service began following a review of the agency’s psychosocial and rehabilitation support. The report recognized that increasing numbers of cancer survivors would lead to an increasing demand for services that could address their posttreatment concerns, including their return to work. One advantage of the B.C. Cancer Agency was its unique flexibility in staffing. It was able to add another of type of expertise to its counseling department (i.e., VR counseling), while still remaining within the same funding framework. Thus, VR services could easily be integrated into the model. The B.C. Cancer Agency in 1994 was also unique in that it was one of the few cancer agencies in Canada that included counselors trained at the master’s degree level in their staffing. Most psycho-oncology programs across Canada hired social workers, psychologists, and psychiatrists only; the B.C. Cancer Agency hired art therapists and music therapists as well. No specialized VR counseling master’s training programs existed in Canada at the time, so most VR counselors obtained certification in this field only after they completed their master’s training as generic counselors. (The University of British Columbia has since developed the first VR counseling program in Canada.) This combination of high level in counseling with experience and specialization in VR appeared to be a good fit for cancer survivors. It met their needs for strong psychosocial support, while providing the added value of expertise in VR. Importantly, the agency operated a team-based model of intervention. As 1 of 10 members in a counseling/social work team in a Patient and Family Counseling Department, the VR counselor is expected to perform most aspects of the counseling role, including individual counseling, family therapy, and group therapy. Person-to-person assistance includes such specific tasks as identifying funding support for travel costs and accommodation related to treatment, income replacement, and funding for side effect medication (cancer treatment being funded by the provincial health insurance). The VR counselor requires skills in career exploration, skills training, disability management in the workplace, vocational assessment, and job search, and should be experienced in working with insurance companies, clients, families, and employers. A diversity of experience helps provide a useful knowledge base when serving cancer patients and could be gained from a working with, for instance, people who have brain or spinal cord injuries or even arthritis. Like other members of the team, the VR counselor is required to provide counseling that is flexible enough to address all the varied psychosocial issues touching the people affected. At the same time, the counselor provided specialized services in VR. The VR counselor therefore fills a dual role, a unique position the B.C. Cancer Agency was able to introduce, as mentioned, because it did not require supplemental funding, but only a slight modification in job description.


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An important factor in the effectiveness of VR counseling at the B.C. Cancer Agency is the tumor-specific care model that characterizes the Vancouver clinic. The psychosocial team is assigned to people with particular types of tumors, following their patients through their entire treatment. The team assists clients through all the stages, from diagnosis and inpatient treatment to outpatient, from survivorship to, if necessary, palliative care, facilitating continuity in care and the development of personal relationships. Thus, the VR counselor is required to provide counseling that can address issues experienced at any point in the cancer care trajectory. This tumor-focused approach also fosters an interdisciplinary approach, facilitating communication and collaboration between members of the team. An added benefit is the opportunity for the counselor to develop deeper knowledge around a specific cancer. The VR counselor collaborates in providing client-centered and cancer-specific education days and participates in ongoing consultations with oncologists, nurses, radiation therapists, nutritionists, and other members of the interdisciplinary partners working the patient’s team. In setting up the service, it was decided that clients with central nervous system tumors had the greatest need for VR because their cancers were most likely to have an impact on normal functioning. The research to date has supported this assumption in that survivors of central nervous system tumors have the highest adjusted risk of disability (Short et al., 2005). Also, the agency identified a second group of clients who seemed most in need of counseling support—childhood cancer survivors who were transitioning to us in early adulthood from a pediatric hospital. Most of these clients had a history of brain injury related to a tumor or its treatment. Others were coping with a cancer or treatment related physical disability or change in physical appearance. This period of transition from child to adult is usually a time of career exploration; counseling and vocational assessment at this stage could be opportune in accelerating the process of identifying, refining, and setting career goals. For those childhood cancer survivors that have disabilities severe enough to limit their independence, help might be needed in developing new sets of skills to cope with the activities of daily living (cooking, shopping, financial management, and so on), and to make the transition to the new levels of responsibilities of adulthood. For the more severely disabled adult survivor of a childhood cancer, life is a series of transitional stages, each of which might require professional monitoring and ideally access to community resources. The challenge for the VR counselor is that such resources were not always available, especially given the increasing numbers of postpediatric clients who needed this kind of ongoing assistance. Here, the counseling tasks are more far-ranging, and the job title of “rehabilitation counselor” reflects this broader role. In 2004, 10 years after the creation of the VR service, a review revealed that most referrals involved clients with brain tumor (61), followed by those with breast cancer (34) and those with head/neck cancer (13). The three most common types of interventions included counseling support, help with locating and accessing resources in the community, and insurance education/ counseling. Still, it was believed that people with different types of cancers

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might also benefit from VR counseling. As such, VR services were recently expanded to other B.C. Cancer Agency centers. The VR counselor now provides provincial consultation and community referral for two other cancer centers and another center due to open soon as well as to a provincial community oncology program. The service will also be provided to Yukon Health in the near future. The VR counselor discusses VR issues directly with patients by phone, and helps connect them to the many resources available in their community. The counselor also works closely with local social workers and clinical counselors. By accessing provincial and federal programs, many career exploration, job search, and VR services could be made available to patients in their community.

THE BENEFITS OF PUBLICLY FUNDED OUTPATIENT HOSPITAL SETTING In British Columbia, many certified VR counselors are hired by insurance companies such as workers’ compensation boards, motor vehicle insurers, and long-term disability companies. Relatively few counselors work for nonprofit or contract services (with provincial or federal funding). Only four VR counselors in British Columbia work full-time in the local rehabilitation outpatient hospital, funded through the Canadian health care system. Publicly funded VR counselors enjoy a unique advantage of not having to balance their clients’ interests against the financial priorities of their employers. They may be free to deliver a more client-centered approach—to look beyond, for instance, the narrow issue of wage replacement. Publicly funded counselors may be free to focus not only on a range of resources available but also on the real-life goals defined by the needs and aspirations of their clients. Most critically, the work of VR counselors is to encourage their clients to become proactive—to help clients develop new goals in their changed and often difficult circumstances and locate resources both within themselves and in the community. VR counselors require time to assess and treat psychosocial concerns, clarify client-identified barriers to employment, and provide career assessment and exploration. The aim of the work is always to encourage clients to develop individualized goals to meet their personal needs, given their psychosocial and medical situation, while helping access funding resources available to help clients realize their goals. As part of this proactive approach, the B.C. Cancer Agency, through its VR counseling program, created the checklist “Returning to Work: Things to Consider” (Parkinson, 2007). This information provides clear, empowering counsel to clients on how to self-determine their care, take steps to overcome or address self-identified barriers to a return to work, understand the conditions and terms of insurers, and identify other resources potentially available to the patient.

RETURNING TO WORK: THINGS TO CONSIDER Often when you are recovering from treatment, it is hard to imagine how you are going to cope when you return to work. It is important to remember that


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you are recovering from treatment and how you feel now may be different than how you feel in the next days, weeks, and months. However, knowing a little more information about what steps you can take might help you feel more in control of the situation.2

Talk to Your Doctor (Oncologist) Generally, your oncologist has had years of experience with understanding the impact of cancer and cancer treatment and recovery, and can be helpful to you in estimating a reasonable timeframe for your return to work. However, you are unique and your recovery might vary from the oncologist’s experience, so explain to your oncologist what challenges you are having and how you think this might impact your ability to work. This is especially important if you are getting close to what the oncologist estimates as the average recovery time and you don’t feel you are ready. Keeping your oncologist informed of your individual situation is good for two reasons: 1. The oncologist might be asked by funding sources (i.e., social assistance, long term disability plans, etc.) to provide an opinion on your readiness and they need to be aware of the challenges you have and the particular demands of your job in order to write informed recommendations for return-to-work. 2. If the timing of your recovery is not what they expected, it might be helpful for them to know so they might intervene. For example, fatigue is one of the most common side effects of treatment and usually resolves itself. If it does not, it is important for your doctor to know so that you may be properly assessed and treated.

Take Control over Your Own Rehabilitation Plan If you feel you are not physically ready to return to work, ask your doctor if it is worth participating in an exercise program. If you are getting close to a return-to-work date, check with your doctor whether you can start replicating your workday routine. Get up at the same time of the workday, do similar duties around home to bring up your overall physical conditioning level. If a fatigue is a concern, plan for ways to conserve your energy by scheduling rest breaks, or scheduling high-demand duties in times when you know you have higher energy levels. It is very important to be realistic and patient with yourself around coping with fatigue. If you feel that you are not emotionally ready to return to work, use the time off to connect with a counselor to learn better coping skills, for instance, relaxation exercises, cognitive behavioral therapy, time management, assertiveness skills, and so on. Seek out counseling support if feelings of depression, low self-esteem and anxiety persist. If you are having problems with your thinking and memory skills, know that this can be side effect of treatment that is often temporary and plan to implement strategies to deal with this, rather than putting pressure on yourself to be perfect.

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Investigate the Possibilities at Your Workplace It is likely that you are not the first person that has had to return to your workplace after an illness or injury and therefore it would be helpful for you to know how your employer has handled this issue in the past. Your union representative, human resources specialist, occupational health nurse or supervisor may be able to guide you. You don’t necessarily have to provide them with an exact date of return because you may not know, but you could consider asking them about any return-to-work provisions that may be in place for when you are ready to come back. Many cancer patients have a graduated return-to-work plan. Even in sedentary jobs, people can become “deconditioned” to working after having a period of time off. If you have experienced cancer and had cancer treatment, this can cause further deconditioning. In many cases, a gradual easing back to work can be helpful in slowly rebuilding your work-conditioning level. In some cases, particularly individuals who have physically demanding jobs, “work hardening” programs (typically funded by insurers) exist to help individuals resume their work readiness. It might be helpful for you to know what your employer’s expectations are for you upon your return-to-work, and the length of time that they have allowed for your graduated returnto-work plan. Consider asking if there are any opportunities to do different types of duties, if you can’t resume your old ones right away, or if they will be able to accommodate any special needs that you have. It never hurts for your employer to know you want your job back. Consider keeping in touch with your workplace during your time off, as this may help with the transition of your return when you are ready to come back.

Know Your Rights and Responsibilities In Canada there is human rights legislation to support you regarding your return-to-work, for example, having a job held for you, and providing accommodations for any disability you might have. The B.C. Human Rights Coalition can be a good resource in providing you with information on your rights and responsibilities. Not all employers know their legal responsibilities. Ideally, you want to carefully negotiate your rights so that a positive relationship with your employer remains to ensure a comfortable working environment when you return. Knowing your rights and responsibilities may help you feel more confident and in control by having an action plan in place should you need it.

Know Your Insurance Plan Some insurance plans, such as Long-term Disability (LTD), or Canada Pension Plan (CPP) Disability, and so on, may have provisions for work rehabilitation. Depending on the plan, they may be able to top up your wages if you return on a graduated return-to-work basis, or to provide retraining if you can’t return to your old job. Typically, insurance companies will ask questions such as: • Can your go back to your old job? • Can your old job be modified?


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• Can you move into another job with your company? • Can you be trained to do a different job in your company? • Can you trained or rehabilitated to do another job? Insurance might consider if you can be retrained to do something else if no job is currently available that you can do. If retraining is an option, they might pay for this if it is cost-effective for them to do so. Not all insurance plans are the same, and it is important to know how they work and what they provide. Not all long-term disability plans provide funding for rehabilitation or training. The criteria for receiving benefits can vary and many long-term disability plans have “own occupation” or “any occupation” criteria. “Own occupation” can mean that you remain unable do your job due to disability and this criteria can be time-limited (for example, for two years). “Any occupation” can mean that you are unable to do any job that you are qualified or trained to do. Especially if it looks likes you will not be able to return to work, investigating your options early on will give you the ability to plan your next steps. Don’t hesitate to speak with your human resources and union representative if you’re not sure about your company’s insurance plan. Some long-term disability companies have VR consultants who are available to facilitate your return to work.

Know Government Employment Programs As mentioned above, CPP Disability has some provisions for VR, and if you have collected employment insurance (EI) in the past few years you might find career exploration, job search instruction, and/or funding for training. This is especially true if it looks like you will have difficulty finding work with your current skill set. EI programs might also be available even if you have not collected over the past few years, but this can vary. The B.C. government provides VR (Employment Program for Persons with Disabilities) if you have been considered permanently disabled and not receiving other insurance support, and therefore it is worth checking this out to see if you qualify. Many cancer patients manage to return to work successfully. Another important feature of the public sector is the presence of multiple types of funded professional help available in some regions (through the B.C. Cancer Agency, local rehabilitation or acute care hospitals, and community programs) for those who have sustained brain or spinal cord injury as a result of the tumor or treatment. These services include physiotherapy, VR, recreational therapy, neuropsychology, occupational therapy or addictions counseling. In reality, the ability of people to manage their emotions and the activities of daily living cannot be separated from their vocational activities. Skills like using public transportation independently, performing routine tasks in a timely manner, and tending properly to basic needs have a decisive impact on one’s ability to hold a job. Thus, access to a range of professionals is a distinct advantage over single disciplinary programs that focus on VR to the exclusion of other interventions. However, access to comprehensive rehabilitation services is not as readily available outside the urban areas, which makes serving those in more rural areas more difficult.

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Although the waiting list for nonacute services is a major shortcoming of the public health care system, this delay can be useful in some cases, allowing survivors of some cancers the time to recover from the short-term side effects of treatment, including fatigue, and to arrive at a clearer understanding of their long-term goals. By the time clients enter the VR program, they are often in a better position to derive the maximum benefit. The delay is potentially more problematic, however, when the client’s rehabilitation needs are acute or when treatment is extended over a long period of time. Clients facing extended treatment could consider a return to work while still undergoing treatment if side effects can be managed effectively. However, with extended treatment, it is likely that side effects may increase (e.g., fatigue) and impact negatively on work. It could also be difficult to balance a full-time treatment and rehabilitation program with the competing demands of regular employment unless there was sufficient flexibility in work hours, rehabilitation plans, and wage replacement provisions.

RESOURCES TO SUPPORT SELF-DETERMINATION As part of its proactive approach to cancer rehabilitation, the B.C. Cancer Agency VR service developed two services that complement the cancer rehabilitation service: (a) a series of support groups and support programs, and (b) written information via a Web site consisting of articles, checklists, and other self-help tools. The support programs and groups, both personal and online, aimed to develop networks through which clients could support each others. This program is described next. The Web site aimed to support cancer patients to develop their own skills and manage their VR process as much as possible.

Support Programs: The Reintegrating Back to Life Group The B.C. Cancer Agency began the Reintegrating Back to Life support group based on eight years of counseling experience with the issues clients faced as they moved from survivorship to restarting their lives. Clients who joined the program met with counselors for a screening interview to clarify their goals and determine the suitability of the group for them. The program combined instruction with group sharing. Educational speakers included a counselor who taught relaxation and meditation strategies, a nutritionist, and an exercise physiotherapist. In the last group session, at the request of the group members, a nurse specialist introduced pain and symptom management and offered education support. An outline of the sessions is shown here. I.

Introductory Session • Introductions • Challenges to finding a “new normal” after treatments are finished • Ideas about what has been found to be helpful in meeting these challenges • Brainstorming and co-design of sessions


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II. Belief Systems about Cancer, Illness, and Wellness • The cognitive-behavioral approach • Stress management strategies III. Changes • Physical: sexuality issues, body image • Emotional: relationship issues, communication • Cognitive: fatigue, “chemo brain” IV. Self-Care • Exercise • Nutrition V. Education in Pain and Symptom Management VI. VR • Employment issues, residual long-term disabilities, and so on • When to return to work, negative and positive factors to consider • Changes in priorities or ambitions • Workplace disclosure issues, new employers, résumés • Human and employee rights, insurance, defending one’s claim Although all the clients who participated found it helpful, the counselors experienced several challenges, including attracting sufficient participants (at least eight for cost-effectiveness), appropriate timing (balancing the group with treatment demands and effects), and the changeable needs of participants. As demand for the group grew, delays were encountered before groups could begin, increasing the likelihood that client priorities changed substantially. Nevertheless, the group process was helpful for participants. To address some of these challenges, the B.C. Cancer Agency started a series of online support groups in 2007 for young adult women coping with breast cancer, which has since been made available to individuals across the province. The success of this initiative in addressing a larger pool of clients, and the easy accessibility of the online format, especially for this target age group, facilitated the use of online vocational resources for agency clients and the general public.

Written Information A final example of informative resources is reproduced here. Importantly, this article was written by two VR counselors—one with the G.F. Strong Acquired Brain Injury Program and the other with the B.C. Cancer Agency— demonstrating the interagency collaboration that is another hallmark of the British Columbia cancer support. The immediate goal of the counselor authors was to inform patients and clients about how tumors may cause brain injuries that might affect their cognitive functions and their ability to work. But the article also points out the importance of having a neuropsychological evaluation in assessing intellectual and cognitive functions, especially in regard to VR, and describes other interventions that might ease the return to work, including job modifications and renegotiating tasks. Finally, the article points to suggestions the patient can give to his or her physician—who must complete the medical form for the insurer and can provide this recommendation.

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RETURNING TO WORK AND LONG-TERM DISABILITY FORMS: WHAT SHOULD YOU AND YOUR PHYSICIAN CONSIDER? The article was written to inform patients and clients about how tumors may cause brain injuries that might affect their cognitive functions and their ability to work. The article also points out the importance of having a neuropsychological evaluation in assessing intellectual and cognitive functions, especially in regard to VR, and describes other interventions that might ease the process of returning to work, including job modifications and renegotiating tasks. Finally the article contains suggestions patients can give to their physicians who must complete the medical form for the insurer. Many patients recovering from treatment are keen to return to work as quickly as possible. However, it is not always clear how a brain tumor or its treatment will affect a person’s ability to return to work. People are often more successful with early rehabilitation and may be able to access rehabilitation services through a work-related disability plan. If this is the case, there are several factors to consider with your doctor when planning the much anticipated step of getting back to work. Even if rehabilitation is not available through a long-term disability plan, these points are relevant when pursuing government-funded rehabilitation. A brain tumor or treatment for a tumor may result in changes in your thinking abilities, such as impairments in short-term memory, attention, and concentration. You may also find changes in your physical capacities, such as a lower energy level, muscle weakness, and changes in mobility. You may notice these changes as you go about your activities at home. Perhaps you cannot care for yourself and your family the same way as before. Too often, patients with a history of a brain tumor return to the demands of work and what seemed like small changes at home become significant barriers if they are not recognized and addressed. When it is unclear how these changes will affect your ability to work, it will be helpful if your physician includes the following recommendations on your insurance form: “I recommend that this individual undergo a neuropsychological evaluation for vocational purposes, in conjunction with a job analysis, to assess employability. If indicated, appropriate intervention from a brain injury specialist is needed to facilitate the return to work.” The form is completed in this manner to help insurance companies fairly determine employability, and if appropriate, optimize your chance to successfully return to work. It is important to have these assessments to either safeguard your benefits or to help you get back to work under the right conditions. This approach is recommended for the following reasons: • A neuropsychological assessment is the best way to identify any cognitive or thinking difficulties that you might have. A neuropsychologist will provide assessments, training, education, and counseling related to changes in the brain. A neuropsychology assessment consists of a series of tests to measure your emotional state and cognitive and perceptual abilities, and is far more detailed than a basic neurological assessment. It is the best way to pinpoint subtle cognitive problems. • The term “for VR purposes” is best used to make it clear that the neuropsychology assessment is intended to determine how cognitive changes will impact your


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ability to work. The term “in conjunction with a job analysis” is also important so the assessment is used to determine your ability to do your job. In a job analysis, activities, and responsibilities of your job are analyzed so that it can be determined how well your changed abilities match the demands of your job. For example, short-term memory changes might not be a significant barrier for an assembly line worker who performs repetitive tasks. However, memory changes could pose significant problems for a nurse who needs to remember information about a variety of patients. If it is found that your cognitive changes will influence your ability to do your job, intervention by a brain injury specialist is recommended, typically a VR counselor who has expertise in brain injury. The Canadian human rights legislation dictates that an employer has a duty to accommodate an individual who has a disability, including a decline of cognitive functioning. A brain injury specialist can give guidance to the employer on how to make reasonable accommodations to help you get back to work. This rehabilitation professional can assess and negotiate modifications (accommodations) to the job, such as a change in hours, duties, break times, and physical demands. A brain injury specialist is able to educate the employer about the challenges the returning worker will experience and help reduce or overcome these challenges. A final issue you will want your doctor to consider when completing a longterm disability form is the difference between supported employment and competitive employment. Competitive employment usually means that the employee eventually resumes all work functioning without any assistance or modification to the job. In supported employment, however, an employee resumes work only if appropriate support is provided. Examples of support include moving a desk to a distraction-free area, giving the employee a flexible start time, providing extra coaching to learn duties, or trading away problematic job tasks to another employee. This is an ongoing process, because whenever something changes, such as the employee’s level of ability/disability, the demands of personal life, new work relationships, new duties, or changes in health, an adjustment in support may be required. Typically, the first thing the long-term disability company wants to know is whether you are competitively employable. Sometimes it is very clear to the doctor that his or her patient is not competitively employable, and this may mean that disability benefits should be continued. When it is not clear whether you are competitively employable, it will be helpful if your physician bears in mind that a neuropsychology assessment, job analysis, and intervention from a brain injury specialist may all be necessary before this question can be answered. A supported work environment is typically a negotiated process with the long-term disability company to maintain ongoing partial or full benefits and support. As well, it requires the cooperation of an employer who is willing to make changes or accommodate cognitive or physical barriers to allow a return to work. Remember that the previous employer who knows you is most likely to be willing to make these changes. When completing your disability company form, your doctor should consider whether you are in a competitive position to find a new job with an unknown employer. If you are less competitive due to the need for significant accommodations, then probably you should be described as not competitive or in need of supported employment. The efforts of several people, including yourself, your doctor, the long-term disability carrier, a neuropsychologist, and a brain injury specialist may

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RESPONSES: PRACTICE, LEGAL, AND POLITICAL FRAMEWORKS all be needed to help you get back to a productive paid work life. Cooperation between your physician and your disability insurance carrier to provide the types of interventions described, as well as your determined efforts, will enhance your chances of successfully returning to either competitive or supported work.3

CONCLUSION Cancer is an area that has been overlooked in relation to vocational rehabilitation (Marshall, 2008). The vocational impact of cancer can be profound, including issues such as fatigue, emotional turmoil, cognitive dysfunction and treatment demands, and fear of discrimination. The B.C. Cancer Agency VR service, begun in 1994, represents a unique opportunity to capitalize on the individualized cancer rehabilitation services that can be designed in the public sector. This model has been demonstrating significant outcomes and has now been expanded across other parts of the region. It is critical to engage people in self-determined actions that can facilitate their own recovery and find a “new normal” life given the cancer experience. Counseling directed to clients based on their specific tumors provides a holistic approach as rehabilitation help is available throughout the continuum of care for those patients. Specializing in particular client groups has lead to some exciting connections. For instance, ongoing referrals to the local outpatient rehabilitation hospital, G.F. Strong, along with the necessary consultations, have resulted in joint research projects looking at the rehabilitation needs of brain tumor patients. Realizing that the rehabilitation system needs to be more responsive to the needs of patients coping with brain tumors and who have a prognosis that is considered palliative, a combined interhospital research study with the B.C. Cancer Agency and G.F. Strong Acquired Brain Injury Program has begun to assess those needs with the aim of one day providing better end-of-life care. Also the B.C. Cancer Agency is researching a short cognitive screening tool to determine it use in identifying individuals experiencing cognitive impairment so that rehabilitation services can be initiated sooner for those who can benefit. Currently VR is a service that is offered only when the client and or medical/nursing/allied health system identifies some difficulty. Ideally, in future, if VR can be offered earlier on as part of outpatient recovery from treatment, there may be greater opportunities to address potential problems earlier, thereby reducing distress and leading to more timely interventions that help individuals maximize functioning and return sooner to work.

NOTES 1. Reprinted with permission of the Abreast in the West Newsletter, Disclosing Your Cancer Experience at Work, www.abreastinthewest.ca. The version in this chapter has been edited from the original. 2. Reprinted with permission of the Abreast in the West Newsletter, How to Return to Work: Things to Consider, www.abreastinthewest.ca. The version in this chapter has been edited from the original.


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3. Parkinson and Finlayson (2001). Reprinted with permission of the Brainstorm newsletter, Brain Tumor Foundation of Canada. The version in this chapter has been edited from the original.

REFERENCES Carlson, L. E. (2008). Clinical, research and policy perspectives on adult cancer survivorship in the USA and Canada. National Invitational Workshop: Towards an Agenda for Cancer Survivorship. Canadian Partnership Against Cancer. Toronto. Carlson, L. E., & Bultz, B. (2002). Efficacy vs. cost of psychosocial interventions: An evidenced based call for action. Oncology Exchange, 1(2), 34–51. Cole, R. P., Scialla, S. J., & Bednarz, L. (2000). Functional recovery in cancer rehabilitation. Archives of Physical Medicine and Rehabilitation, 81(5), 623–627. Davies, E., Hall, S., & Clarke, C. (2003). Two year survival after malignant cerebral glioma: Patient and relative reports of handicap, psychiatric symptoms and rehabilitation. Disability and Rehabilitation, 25(6), 259–266. Feuerstein, M., Hansen, J. A., Calvio, L. C., Johnson, L., & Ronquillo, J. G. (2007). Work productivity in brain tumor survivors. Journal of Occupational and Environmental Medicine/American College of Occupational and Environmental Medicine, 49(7), 803–811. Huang, M. E., Cifu, D. X., & Keyser-Marcus, L. (1998). Functional outcome after brain tumor and acute stroke: A comparative analysis. Archives of Physical Medicine and Rehabilitation, 79(11), 1386–1390. Magee, S., & Scalzo, K. (2006). Picking up the pieces: Moving forward after surviving cancer. Vancouver, BC: Raincoast Books. Marshall, C. A. (2008). Family and culture: Using autoethnography to inform rehabilitation practice with cancer survivors. Journal of Applied Rehabilitation Counseling, 39(1), 9–19. Maunsell, E., Brisson, C., Dubois, L., Lauzier, S., & Fraser, A. (1999). Work problems after breast cancer: An exploratory qualitative study. Psycho-Oncology, 8(6), 467–473. Metcalf, D., & Parkinson, M. (2006). Vocational issues in cancer rehabilitation. Second International Rehabilitation Conference. Vancouver, BC. Parkinson, M. (2005). Disclosing your cancer experience at work. Abreast in the West Newsletter, 6(2), www.abreastinthewest.ca. Parkinson, M. (2007). How to return to work: Things to consider. Abreast in the West Newsletter, 8(2,3), www.abreastinthewest.ca. Parkinson, M., & Finlayson, J. (2001). Returning to work and long term disability forms: What should you and your physician consider? Brainstorm, 49. Physical symptom management: Fatigue. (2006). In J. C. Holland et al. (Eds.), Quick reference for oncology clinicians: The psychiatric and psychological dimensions of cancer symptom management (p. 72). Charlottesville, VA: IPOS Press. Sherer, M., Meyers, C. A., & Bergloff, P. (1997). Efficacy of postacute brain injury rehabilitation for patients with primary malignant brain tumors. Cancer, 80(2), 250–257. Short, P. F., Vasey, J. J., & Tunceli, K. (2005). Employment pathways in a large cohort of adult cancer survivors. Cancer, 103(6), 1292–1301. Spelten, E. R., Sprangers, M. A., & Verbeek, J. H. (2002). Factors reported to influence the return to work of cancer survivors: A literature review. Psycho-Oncology, 11(2), 124–131.

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Stewart, D. E., Cheung, A. M., Duff, S., Wong, F., McQuestion, M., Cheng, T., et al. (2001). Long-term breast cancer survivors: Confidentiality, disclosure, effects on work and insurance. Psycho-Oncology, 10(3), 259–263. Taphoorn, M. J., & Klein, M. (2004). Cognitive deficits in adult patients with brain tumours. Lancet Neurology, 3(3), 159–168. Verbeek, J., & Spelten, E. (2007). Work. In M. Feuerstein (Ed.), Handbook of cancer survivorship (pp. 381–396). New York: Springer Science and Business Media.

CHAPTER 6

Mental Health Care in Turkey: Present Status and Future Directions Rebecca Spirito-Dalgin, Tuncay Ergene, Joseph Marrone, and Kerim Munir

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ublic services and treatment for individuals with psychiatric disabilities are in a state of evolution throughout the world. Many countries are in the process of examining current mental health services and are developing ways to incorporate more community-based services (Hisanaga & Granger, 2007; Lachman, 2007; Zipple, 2007). The commencement of full membership negotiations for Turkey with the European Union in October 2005 has refueled Turkey’s impetus to revise health-related laws, legislation, and service structure. Despite its network of primary health care centers across its 81 provinces, delivery of mental health care in Turkey is predominantly hospitalbased. Further, there are geographic disparities in community-based services. Policies and services for individuals who live with severe and persistent mental illness vary greatly, but are intertwined within the uniqueness of individual countrywide health care structures. This chapter describes the administrative structure of the current mental health care system and identifies the unique characteristics of Turkey’s mental health care needs.

CURRENT DEMOGRAPHIC AND ADMINISTRATIVE STRUCTURE Turkey is strategically situated at the crossroads of Europe and Asia and has an important blend of Eastern and Western traditions. Turkey shares land borders with eight countries: Bulgaria to the northwest; Greece to the west; Syria, Iraq, and Iran to the southeast; and Georgia, Armenia, and Azerbaijan to the east. The Mediterranean Sea and the island of Cyprus are located to

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the south. The Anatolian peninsula abuts the Black Sea to the north, the Sea of Marmara to the northwest, and the Aegean to the west (State Planning Office, 2006). The Republic of Turkey (Turkiye Cumhuriyeti) has a democratic and secular constitution. The country’s independence was established in 1923 under the leadership of Kemal Ataturk, following the breakdown of the Ottoman Empire in the aftermath of World War I. The administrative structure of the republic consists of the legislative, executive, and judicial bodies. The legislative power is exercised by the Turkish Grand National Assembly, the executive power by the president of the republic, the prime minister and the Council of Ministers, and the judicial power by independent courts. The country is administratively divided into 81 provinces. The head of the province is the governor, who carries out the policies of the central government, supervises the overall administration of the province, and coordinates the work of the various ministry representatives appointed by the central authority in Ankara, the capital city. According to the last complete census in 2000, the population was 70.2 million. Turkey is the 18th most populous country of the world and among the top three populous countries in the Middle East region, along with Egypt and Iran (State Statistical Institute, 2007). Although Islam is the primary religious influence on Turkish culture, the current republic maintains a secular, Western lifestyle.

THE ROLE OF NATURAL DISASTERS IN TURKISH MENTAL HEALTH The occurence of several major natural disasters has had a significant impact on Turkey. Since the early years of the 20th century, more than 120,000 people have died as a result of natural disasters in the country, and more than 250,000 people have been severely wounded and disabled. Up to 65 percent of these deaths have been caused by earthquakes, 15 percent by landslides, 12 percent by floods, 7 percent by rock slides, and 1 percent by avalanches. Each year 3,000 to 4,000 seismic tremors are usually recorded, and a severe earthquake has occurred every 10–11 months during the course of the 20th century. These earthquakes have directly affected 50 million people, representing 75 percent of the country’s population. More than 1 million buildings have collapsed and 5 million people have become homeless as a result of these earthquakes. Thousands of workplaces have been closed, hundreds of industries have been damaged, thousands of animals have died, and resources valued in billions of dollars have been wasted. Since 1925, more than 2 percent of Turkey’s GDP has been spent to respond to damages caused by earthquakes (Ministry of Health, 2001). In addition, political turmoil and ethnic strife have also severely impacted the country. More than 50,000 deaths and twice that number of injuries have occurred due to these internal conflicts just in the past decade with signifcant internal migration of populations. After the Marmara region earthquakes in 1999, many people experienced and continue to report a series of emotional reactions including fear,

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helplessness, isolation, frustration, and feelings of guilt (Kurtulus, Dilbaz, Soydal & Giderer, 2004; Munir, Ergene, Tunaligil, & Erol, 2004). In response to this natural disaster, the Ministry of Health worked to organize mental health services and to plan the much-needed mental health training of health workers in primary care settings (Kurtulus et al., 2004). The magnitude of this natural disaster and Turkey’s geographical location made it essential to target such programing in all the provinces in the country to improve mental health personnel, strengthen mental health departments in provincial health care centers, and disseminate educational information to the public through reproduced materials (Kurtulus et al., 2004).

A HISTORICAL PERSPECTIVE OF MENTAL HEALTH APPROACHES IN TURKEY Turkey has a long history of treating individuals with mental illness. Previous to the current government, the Ottoman Empire was governed by Islamic law, which recognized mental disorders as physical ailments. People with psychiatric disorders were treated by Ottoman physicians as early as 500 years ago (Bayulkem, 1998). Additionally, in the Ottoman period, religious social foundations and professional guilds also helped poor patients who could not afford to see a physician. In the aftermath of the Ottoman Empire, the republic launched a national health care system that included establishment of regional state hospitals for the treatment of people with serious mental illness. The Law of the Socialization of Health Services came into force in 1961, providing universal entitlement for health services across the provinces. All health care is coordinated by the Ministry of Health under Article 60 of the Turkish constitution which states, “Every individual is entitled to social security.” The Ministry of Health is also responsible for organization of preventive health services, building and operation of state hospitals, supervision of private hospitals, training of all medical personnel, and the regulation of pharmaceutical prices nationwide. According to the 1992 legal provision, people without guarantees of social security are entitled to a “green card,” which allows them to access health services without a fee within the Ministry of Health hospitals. Eligibility for a green card is based on earning less than a minimum level of income as defined by the Ministry of Health. The green card holders can access outpatient and inpatient care at the state and some university hospitals, including inpatient medical drug expenses but excluding the cost of outpatient drugs. Most hospitals and physicians are concentrated in cities and large towns, with limited mental health service in rural areas. Although the regional state hospitals have been maintained as long-term care for individuals with serious and persistent psychiatric disorders, the provincial state, university, as well as military hospitals (under the Ministry of Defense) provide an important network of outpatient and inpatient mental health care services. It needs to be underscored that the regional state psychiatric hospitals, in addition to their long-term care roles, also provide an important triage and acute treatment function for publicly funded specialist services, as demand for such services

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has continued to exceed their availability. Nevertheless, intermediate-level care facilities, including residential care, have been relatively nonexistent across the country. In this respect, families have continued to shoulder an important role as primary caretakers for individuals with psychiatric disabilties (Arikan et al., 2007).

CURRENT MENTAL HEALTH CARE SYSTEM In analyzing the mental health care system in the country, it is useful to examine the institutions and organizations working on mental health and rehabilitation services at three levels (Munir, Ergene, Dag, Erol, & Aker, 2006): • Policy making and legal structure, • Planning and program development, • Implementation-operations at the local level.

Policy and Legal Structure The main policy-making institutions include the Turkish Grand National Assembly (TGNA) and the State Planning Organization. Other institutions include the Ministry of Health, the Ministry of National Education, the Ministry of Labor and Social Security, the Ministry of Finance, the Ministry of National Defense, the Ministry of Interior, and the Higher Education Board of Turkey. The TGNA is the body that determines the legal framework for health care services whereas the State Planning Organization (SPO) makes decisions on the strategies and appropriate investments for the health sector.

Planning and Program Development This is the level at which implementation objectives and local strategies are identified. The Ministry of Health and provincial directorates under its auspices are the units responsible for these actions. They are charged with the preparation and guidance of local plans and programs within the framework of the centrally organized state-identified strategies and policies.

Implementation-operations at the Local Level At the implementation level, institutions that directly provide services are regional mental hospitals, mental health clinics in general hospitals, rehabilitation centers, private clinics, and individual medical practices. The Ministry of Health is the ultimate implementing agency, which ensures the coordination and implementation of plans and programs. This ministry is also the primary mental health services provider. The General Directorate of Primary Health Care Services and General Directorate of Treatment Services are the main service units responsible for mental health programs in the Ministry of Health. The Department of Mental Health, established under the auspices of the General Directorate of Primary Health Care Services in 1984, has the authority to direct mental


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health services in Turkey. It has four branch directorates, which include (a) Preventive Mental Health, (b) Drug Addiction, (c) Chronic Mental Disorders, and (d) Children and Adolescents Mental Health. The General Directorate of Treatment Services is the management body that has the responsibility for planning, coordination, and supervision of inpatient treatment centers. The mental health hospitals, the primary providers of inpatient treatment services in Turkey, operate under the General Directorate of Treatment Services. The primary health care–based mental health services are organized under one general directorate, while the secondary and tertiary health care services are organized under another. There is limited coordination between these two bodies. Turkish health care services have multiple, potentially conflicting leadership responsibilities making efficient decision making difficult (Coruh, 1995; Oztek & Eren, 1996). The Ministry of Health works as an implementation agency, and the senior directors spend an inordinate amount of time in personnel matters instead of making policy decisions at a macro level. The SPO, which develops annual implementation and five-year development plans, has formed a commission that has reported that Turkey has suffered from a serious lack of coordination within its institutions and, as a result, the management and resources in the health system are not used efficently (State Planning Office, 2006). In an attempt to improve coordination, guidelines for mental health care services have been developed by the Ministry of Health. These guidelines aim to clarify the implementation of mental health services at the provincial level and ensure that the health care services are coordinated and provided holistically. However, the limited resources allocated to the health sector within the Turkish system continue to be directed toward therapeutic rather than holistic preventive models. Mental health services are distributed unevenly across Turkey and do not reach all eligible patients. Turkey’s tertiary mental health service provision is centered around large regional psychiatric institutions. There are five staterun mental hospitals (under the Ministry of Health) which together have 5,570 beds and two hospitals attached to the Ministry of Social Security that have 426 beds.The private sector (university or private hospitals) provides just an additional 150 beds (Ministry of Health, 2002). Although the current situation is improving, in 2004 there were only 784 staff psychiatrists working for local and national public mental health services, of whom 359 work in large public psychiatric hospitals (one psychiatrist per 100,000 people in the population as a whole—half that ratio in rural areas) (Munir et al., 2004). There are very few clinically trained psychologists, psychiatric social workers, and psychiatric nurses to meet the needs of the population (Coskun, 2004). Additionally, there has been limited progress in terms of creating an infrastructure of nonphysician health care personnel such as psychologists, social workers, psychiatric rehabilitation staff, vocational rehabilitation counselors, occupational therapists, and mental health counselors. Individuals with severe and persistent mental illness are generally treated within the hospitals. Psychiatric rehabilitation adhering to community psychiatric rehabilitation principles is essentially nonexistent. After the 1999 earthquakes, a few model community-based programs were set up in the Marmara region

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with international funding (e.g., Izmit Psikiyatrik Rehabilitasyon Dernegi); however, little governmental support was provided for national replication. Hence, for people who do not live near the major mental health hospitals in urban areas, the only option is to travel many miles to obtain mental health care. This can be a huge financial and family burden, especially for those who live in the more rural, eastern parts of the country. Understandably, this greatly impacts family decisions to commit a relative to a hospital or keep an individual confined to his or her home, as well as making ongoing follow-up mental health care virtually impossible. The Ministry of Health also aims to improve the quality and the quantity of service providers for special populations. A specific goal is to prevent the inappropriate use of drugs and drug recidivism. In this framework, in addition to the Alcohol and Drug Addiction Treatment and Research Center, which is affiliated with the main psychiatric hospital center in Istanbul, centers with 30 beds have been established in several outlying areas of the country since 1997. There is also a major military rehabilitation center that provides rehabilitation services to veterans and the public. The regional state psychiatric hospitals provide forensic assessment services for custodial care of potentially dangerous patients with mental disorders, but there is no subsequent rehabilitation intervention model. There are almost no state-funded specialized service programs for children with developmental and physical disabilites, children and adolescents who have experienced trauma or abuse, as well as adults who have experienced trauma. Similarly, there is a significant lack of mental health services for the elderly, which was found to be due to primarily financial barriers (Sivas, McCrae, & Demir, 2005).

UTILIZATION OF PRIVATE HEALTH SERVICES There are no reliable data on the share of outpatient visits provided by private facilities, as private physicians are not required to report their activities other than for tax purposes. However, it has been estimated that approximately 14 percent of the population uses a private physician as their first contact point (Munir et al., 2006). There is significant regional variation in the choice of private providers, ranging from a low of 6 percent seeking private care to a high of 20 percent (Ministry of Health, 2001). Preferences for private care depend on the type of insurance coverage. Given that about 75 percent of all doctors operate at least part-time in the private sector, a significant share of health services, particularly outpatient services, must be provided in this manner. The Turkish Medical Association (TTB) sets floor prices for all outpatient medical services provided by the private sector, including laboratory and diagnostic services. Fees are set on a provincial basis and adjusted twice a year. The TTB only sets a minimum price, which is binding for all private service providers; above that, private providers are free to charge as much as they want.

Nongovernmental Organizations A limited number of nongovernmental organizations (NGOs) have been active in the health sector, and their focus has primarily been on family planning


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and/or maternal and child health issues. Although officially a United Nations agency, the UN Children’s Fund (UNICEF) has been active in Turkey since World War II. In addition, there are some advocacy associations that focus on a particular health condition such as diabetes or cancer. These organizations provide limited health services, as their main focus is raising money to support further research and to provide emotional encouragement and support to their specific clients. While there are several organizations that seek to advocate for the needs of people with mental illness (referenced in later sections), none has the political presence, influence, or clout that organizations such as the National Alliance of the Mentally Ill (NAMI), the National Behavioral Health Council, and the National Association of State Mental Health Program Directors possess in the United States.

ISSUES FOR INDIVIDUALS WITH PSYCHIATRIC DISABILITIES AND THEIR FAMILIES: STIGMA, ACCESS TO SERVICES, LACK OF POLICY, AND IMPLEMENTATION The impact of mental disorders and disabilities often goes unaddressed in many societies, and Turkey is no exception. Public attitudes toward mental illness in Turkey appear to be similar to those in the Western countries, based on stigma, stereotypes, and lack of expectations for recovery. A number of studies have been conducted examining Turkish public attitudes of individuals with psychiatric disabilities (Arkar & Eker, 1992, 1994; Sagduyu, Aker, Ozmen, Ogel, & Tamar, 2001). For example, Arkar and Eker (1994) researched the attitudes of people visiting patients in a hospital. They found that there was more social acceptance in response to the presentation of a vignette of an individual with depression than for an individual with schizophrenia even when the participants were not given any specific diagnostic label. However, participants who were given a diagnostic label scored higher on ratings of social distance, expectation of physical burden, and perception of necessity for treatment. Turkish studies (Arikan & Uysal, 1999; Tengilimog˘lu, Kisa, & Dziegielewski, 2000; Tas¸kın et al., 2003) have shown that advocacy to promote the rights of persons with mental disorders and reduce stigma and discrimination can increase sensitivity to the needs of people with mental disorders and serves to improve the care for these individuals and their families. Although there is still a gap in Turkey for changing structural and attitutudinal barriers to achieving positive mental health outcomes, there has been significant progress in this area since the 1999 Marmara earthquakes, which played a key role in raising public awareness and organizing mental health and related associations (Munir et al., 2006). Despite the enactment of recent legal regulations encouraging full participation of individuals with psychiatric disorders within society, these rights remain incomplete or improperly enforced. An epidemiological study (Kılıç, Rezaki, Üstün, & Gater, 1994; Erol, S¸imsek, Öner, & Munir, 2005; Simsek, Erol, Oztop, & Munir, 2007) revealed that individuals with mental disorders

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do not have sufficient access to mental health services in Turkey. The uneven distribution of services in the country remains a major barrier to improving the life situation for people facing these barriers. Individuals face financial constraints and continued discrimination and cannot access education and employment consistently. Lack of cooperation and communication among diverse professional disciplines and with community supporters, including family members, continue to be major obstacles. There is an urgent need to pass legislation to formally endorse the rights of individuals with psychiatric disabilities to overcome discrimination, reduce stigmatization, and ensure societal inclusion. As a result of changes in traditional family structures and weakened social support systems due to rapid urbanization in Turkey, individuals with severe and persistent mental disorders and their families are poorly supported in urban areas (Munir et al., 2006). Similarly, the quality of life is impacted negatively by social exclusion, long-term hospitalizations, and insufficient community-based care services (Eker, 1990; Kis¸iog˘lu, Uskun, & Özturk, 2003). Although recently there has been a substantive increase in the number of nongovernmental mental health organizations in Turkey, (e.g., Association for Schizophrenic Patients and Their Families, Association for Attention Deficit Hyperactivity and Learning Disorders, Association for Mental Health in Babies, Association for Mental Health in School), such organizations do not have enough chapters across the provinces, nor do they incoporate a sufficiently potent political base to be able to make a countrywide impact. However, the availability of Internet services in Turkey is increasing, and many organizations are now able to provide information through their Web sites. One such national nonprofit organization is the Mother Child Education Foundation (ACEV) founded in 1993 by a partnership between private and academic sponsors that has been very successful in emphasizing the importance of the education of parents, especially of mothers, as the child’s first educators in the home. Although this is not a mental health–related NGO, it underscores the importance of collaboration between child health and development, women’s health, and mental health. The average number of years most women and young mothers spent in formal education is five years or less, with over 7 million individuals unable to read or write their own names (www.acev.org). Coupled with this limitation in maternal education is the lack of availability services supporting the emotional development of young children (Erol & S¸ims¸ek, 2000; Erol et al., 2005). The absence of an overall mental health law continues to be a problem as the world community continues to watch the evolution of the Turkish human rights policies. The Turkish Psychiatric Association (TPA) has developed a draft of a law that would protect the rights of psychiatric patients, including principles related to rights, privacy, consent to treatment, involuntary hospitalization, as well as the role of psychiatrists and judges (Coksun, 2004). The TPA has also been very active in advocating for the establishment of such a legal framework for the country through advocacy efforts in the media as well as public agencies. The Health in Transformation Program (Ministry of Health, 2003) develops policies for the Ministry of Health. It develops, monitors, and approves


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standards, enables effective use of national resources dedicated for health, and provides implementation guidance. As a parallel emphasis, it recommends reforms of institutions under the ministry in line with principles of decentralization, and envisages an institutional framework that can engage in strategic planning. If these reforms occur, then the ministry will become more capable in fulfilling its mission of planning for the health sector, as envisioned in the Turkish constitution. To achieve the desired result for the Ministry of Health, legislative studies were carried out, starting with preparation of a draft law on the organizational structure of the ministry (Ministry of Health, 2004). New measures that encourage and promote decentralization are planned. Included in such areas are transfer of authority to provincial governance on matters regarding authorization and closure of pharmacies, monitoring of marketing and consumption of medical products subject to state control, opening of health centers and neighborhood clinics, transfer of authority on issues regarding health personnel, and promotion of health personnel according to performance criteria. Despite this preparatory activity, legislative changes for reforms affecting the Ministry of Health have not yet been made. Nevertheless, the process has started and hopefully will continue when those proposed legislative changes are put into effect.

FIRST POINT OF CONTACT: PRIMARY HEALTH CARE CENTERS There is a need to integrate an evidence-based psychiatric rehabilitation model to improve mental health services within the local network of primary health care centers in the provinces. These institutions remain as the first contact point and can provide early diagnosis and treatment services. Furthermore, they need to be revitalized and the linkages and cooperation with secondary and tertiary health care institutions strengthened. In this respect, it is crucial to provide appropriate and ongoing training to the physicians and other health care professionals practicing at the primary health care institutions regarding the diagnosis and treatment of common mental disorders. Additionally, there is a need to conduct extensive community screenings for common mental health problems for purposes of early identification and treatment as well as planning for treatment and rehabilitation needs. Services for individuals with severe and persistent mental illness should be offered close to the individual’s home, family, and natural community. An adequate level of mental health services is only possible through the development of a cadre of mental health care providers competent in community mental health and psychiatric rehabilitation and buttressed by an appropriate level of information and support. In the era of information technology, cost-effective computing and Web technologies ought to be made available to provide a technological infrastructure to support this systemic transformation. There is also a place for the establishment of nonmedicalized support services, such as telephone crisis lines or peer support services, to fully meet the demand for enhanced community services.

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Ultimately, the Turkish mental health establishment must be able to conduct research and program evaluation studies to fully assess the applicability of the known evidence base in mental health intervention to the Turkish political and social environment. There is the clear need to be able to assess the overall community effectiveness of Turkish mental health and psychosocial services in light of desired policy and clinical outcomes.

THE WAY FORWARD IN TURKEY In the National Mental Health Policy of Turkey (Munir et al., 2006), several strategic priorities were identified. Specifically, there has been a call for an evidence-based, cost-effective, high-quality, and adequate level of mental health services complying with global best practice technologies, standards, and principles. The policy recommended the development of a strong family-centered, community-based service system and inpatient mental health services at the provincial and district level to minimize travel to large tertiary hospitals. Importantly, the policy focused on the need to raise the awareness in the community to address stigmatization, discrimination, and societal exclusion that people with mental illness. Similarly, training, networks, and supports were recommended for a wide range of mental health professionals. In recognition of the prevalence of natural disasters in Turkey and their link to mental health problems, the policy included the need to develop programs for handling issues likely to arise in connection with disasters, including plans for training, staffing, and financial resources for implementation. It was also noted that the mental health care paradigm in Turkey needed to make a shift toward the concept of recovery rather than merely treatment or even rehabilitation. The concept of recovery emphasizes a person’s capacity to have hope and lead a meaningful life, and suggests that treatment can be guided by attention to life goals and ambitions. It includes the maximization of each patient’s (a) autonomy based on that patient’s desires and capabilities, (b) dignity and self-respect, (c) acceptance and integration into a full community life, and (d) resumption of normal development (American Psychiatric Association, 2005). The application of the concept of recovery requires a commitment to a broad range of necessary services; however, the core systemic infrastructure of mental health services to support this shift is currently too weak. Nevertheless, Turkey is in an optimal position of being able to learn from and possibly avert some of the mistakes that earlier maturing systems have made. Therefore, the refinement of mental health care within Turkey should reap the benefit of the knowledge base of others who have seen recovery become the dominant exemplar for meeting the needs of citizens with serious mental illness. Due to the dearth of psychiatric practitioners throughout the country, there is a need to capitalize on the well-developed Turkish primary care system. However, policy should emphasize enhanced psychiatric services and multidisciplinary teams rather than merely encouraging dependence on primary health care. Turkey’s position is also strengthened by its coherent social support structure in terms of family stability. Turkey, like a lot of less affluent countries,


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uses family ties as social cement, but this valuable resource must be protected for the future. A strong cultural context for family engagement does not yet exist in Turkey, and signs of decay are beginning to emerge. A major strength in Turkey is the country’s vitality in being able to openly debate and discuss issues related to mental health and bringing them to national attention. The media have been increasingly open to highligting issues related to mental health. Since the Marmara earthquakes of 1999, there has also been a gradual but sustained lessening of stigma and discrimination related to mental health in the country (Munir et al., 2006). Despite much dedicated effort by the TPA, a major remaining barrier for development of mental health services in the community is that the constituional law of the Turkish republic has not yet enacted a comprehensive mental health law that will authorize the funding and coordination of mental health services in the community (Arikan et al., 2007). It would be difficult for Turkey to develop rehabilitation services without a sustained framework for planning and development. This objective will become more important as Turkey continues to evolve and grow its social institutions. The country’s goal of gaining full membership in the European Union is likely to create a sustainable foundation for development of rehabiliation services across the country, and bodes well for the future.

NOTE This project was supported in part by FIC/NIH D43 TW005807 and NIMH/ NIH MH071286 grants (KM).

REFERENCES American Psychiatric Association. (2005). Use of the concept of recovery: Position statement. Arlington, VA: Author. Arikan, K., Appelbaum, P. S., Sercan, M., Turkcan, S., Satmis, N., & Polat, A. (2007). Civil commitment in Turkey: Reflections on a bill drafted by psychiatrists. International Journal of Law and Psychiatry, 30, 29–35. Arikan, K., & Uysal, O. (1999). Emotional reactions to the mentally ill are positively influenced by personal acquaintance. Israel Journal Psychiatry Related Sciences, 36, 100–104. Arkar, H., & Eker, D. (1992). Influence of having a hospitalized mentally ill member in the family on attitudes toward mental patients in Turkey. Social Psychiatry and Psychiatric Epidemiology, 27, 151–155. Arkar, H., & Eker, D. (1994). Effect of psychiatric labels on attitudes toward mental illness in a Turkish sample. International Journal of Social Psychiatry, 40, 205–213. Bayulkem F.(1998). Turkiye’de Noroloji Norosirurji ve Psikiyatri’nin Tarih Gelismesi [Development of neurology, neurosurgery and psychiatry in Turkey]. Istanbul: Ruh Sagligi Readaptasyon Dernegi Yayinlari. Coruh, M. (1995). Birinci Basamak Saglik Hizmetleri’nde Toplam Kalite Yonetimi [Quality management in primary care services]. Ankara: Haberal Egitim Vakfi. Coskun, B. (2004). Psychiatry in Turkey. International Psychiatry, 1(3) 13–15. Eker, D. (1990). Attitudes toward mental patients in a developing country. Social Psychiatry and Psychiatric Epidemiology, 23, 264–266. Erol, N., & S¸ims¸ek, Z. (2000). Mental health of Turkish children: Behavioral and emotional problems reported by parents, teachers, and adolescents. In N. N.

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Singh, J. P. Leung ve, & A. N. Singh (Eds.), International perspectives on child and adolescent mental health (pp. 223–247). St. Louis, MI: Elsevier Science. Erol, N., S¸imsek, Z., Öner, Ö., & Munir, M. (2005). Behavioral and emotional problems among Turkish children at ages 2 to 3 years. Journal of the American Academy of Child Adolescent Psychiatry, 44(1), 80–87. Hisanaga, F., & Granger, B. (2007). The Japan and US mental health/employment knowledge exchange. International News IAPSRS, 1(1), 5–7. Kılıç, C., Rezaki, M., Üstün, T. B., & Gater, R. A. (1994). Pathways to psychiatric care in Ankara. Social Psychiatry and Psychiatric Epidemiology, 29, 131–136. Kis¸iog ˘ lu, A., Uskun, E., & Özturk, M. (2003). Socio-demographical examinations on disability prevalence and rehabilitation status in southwest of Turkey. Disability and Rehabilitation, 25, 1381–1385. Kurtulus, A., Dilbaz, N., Soydal, T., & Giderer, H.E. (2004). Report on the activities of the Mental Health Department of the Ministry of Health of Turkey since the Marmara earthquake of August 17, 1999, and the Bolu-Duzce earthquake of November 12, 1999. International Journal of Mental Health, 33(1), 31–38. Lachman, M. (2007). The journey to recovery—for people with psychiataric disabilities in ısrael. International News IAPSRS, 1(1), 9–13. Ministry of Health. (2001). Health for all, Turkey’s objectives and strategies—health 21. Ankara: Ministry of Health Publications. Ministry of Health. (2002). Statistics of the General Direcortate of Curative Services. Istanbul: Author. Ministry of Health. (2003). Health transformation program. Ankara: Author. Ministry of Health. (2004). Turkey health report. Ankara: Ministry of Health of Turkey School of Public Health Turkish Model of Family Medicine. Munir, K., Ergene, T., Dag, I., Erol, N., & Aker, T. (2006). Republic of Turkey mational mental health policy. Ankara: Ministry of Health. Munir, K., Ergene, T., Tunaligil, V., & Erol, N. (2004). A window of opportunity for the transformation of national mental health policy in Turkey following two major earthquakes. Harvard Review of Psychiatry, 12(4), 238–251. Oztek, Z., & Eren, N. (1996). Saglik Ocagi Yonetimi [Management of primary care centers]. Ankara: Palme Yayinlari. Sagduyu, A., Aker, T., Ozmen, E., Ogel, K., & Tamar, D. (2001). An epidemilogic investigation of the public’s attitudes towards scizophrenia. Turkish Journal of Psychiatry, 12, 99–110. Simsek, Z., Erol, N., Oztop, D., & Munir, K. (2007). Prevalence and predictors of emotional and behavioral problems reported by teachers among institutionally reared children and adolescents in Turkish orphanages compared with community controls. Children and Youth Services Reviews, 29, 883–899. Sivas, R., McCrae, C. S., & Demir, A. (2005). Availability of mental health services for older adults: A cross-cultural comparison of the United States and Turkey. Aging & Mental Health, 9(3), 223–234. State Planning Office. (2006). 9th development plan. Ankara: Author. State Statistical ınstitute. (2007). Statistical yearbook 2006 of Turkey. Ankara: Author. Tas¸kın, E. O., S¸en, F. S., Aydemir, O., Demet, M. M., Özmen, E., & Içelli, I. (2003). Public attitudes to schizophrenia in rural Turkey. Social Psychiatry and Psychiatric Epidemiology, 38, 586–592. Tengilimog˘lu, D., Kisa, A., & Dziegielewski, S. F. (2000). What patients know about their rights in Turkey. Journal of Health and Social Policy, 12, 53–69. Zipple, A. (2007). Psychiatric rehabilitation in Singapore. International News IAPSRS, 1(1), 3–4.

CHAPTER 7

What’s All This about a “World” Wide Web? The Need and Mandate for Web Accessibility Joe E. Wheaton and Patrizia Bertini

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s its name implies, information on the World Wide Web is (almost) everywhere. As a source of information and entertainment, it may well be the most important invention in history (Friedman, 2006). Nevertheless, for many persons with disabilities, much of its content can be difficult or even impossible to access or read. If properly constructed, however, many of the Web pages that are now inaccessible could be used by everyone. It is appropriate at this point to define a couple of terms before going too far. Technically, the World Wide Web (or simply, the Web) is the information that is transmitted as “Web pages” by a system of computers, collectively called the Internet. Thus, the Web is the information, and the Internet is how the information is moved from one computer to another. In this chapter, we concentrate on the Web, because it is the information on its pages that we care about, not how it was sent to our computers. This chapter reviews the Web accessibility laws and regulations in the United States and countries with what we deem to be noteworthy accessibility policies. Readers can use this information to gain an understanding of what is being done by several countries to mandate accessible Web sites and as a basis to advocate for persons with disabilities. The chapter also cautions that just making Web pages compliant with technical standards does not mean they are accessible or even readable. We stress the need to look for functional accessibility over “standards-based accessibility.” Accessibility, in general, is hardly a new problem and did certainly did not originate with the Web. Inaccessible buildings have been rule until only recently (and many buildings are still inaccessible). With the passage of the Americans with Disabilities Act (ADA) in 1990, however, building access came to the fore. Within a year of

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the passage of the ADA, the ADA Accessibility Guidelines (ADAAG) were published. These guidelines were designed “to ensure access to the built environment, the ADA requires the establishment of design criteria for the construction and alteration of facilities covered by the law” (Access Board, 2002). Subsequently, the concept of universal design extended accessibility to consumer products, such as phones with large numbers to help persons with visual impairments (Center for Universal Design, 2006). From recognizing the problems with physical environments and products, it logically followed that if persons with disabilities were going to participate in all aspects of society, information must also be accessible. Unfortunately, like many previous inventions, the Web has had an access problem since its inception in the 1990s. Although it is probably true that many users of the Web are completely unaware of what Web page accessibility is, and even fewer understand how to implement it, we believe that few actually oppose it. They are simply unaware of its need. Businesses, for example, want to make their products available to the widest possible audience to increase profits. If making their Web sites accessible increases profiles, they should be all for it. Businesses also they recognize that governments are implementing accessibility standards for Web pages that address the general public (which, of course, includes persons with disabilities). If increased profits and government mandates were not enough, anyone designing or using the Web would be interested in learning that accessible Web pages are more usable, which helps everyone. Even those who do not have a disability (yet), often know others who do. Many of us also have aging parents and friends who will need help, or we recognize that it is just better for society if everyone can participate. Finally, accessible Web page display better on alternative “user agents” (a fancy term for the computer we use to access the Web), such as cell phones. With the growth of cell phones and PDAs to access the Web, accessibility will help more users.

THE UNIFYING THEME: INCLUSION AND EQUITY At the National Council on Rehabilitation Education national conference in San Diego in February 2007, Alan Bruce gave a presentation titled “Globalization and Social Inclusion” (Bruce, 2007). In his lecture, Bruce identified a “paradigms for exclusion,” factors that limit participation in society. Chief among these was differential access to information resources. We believe that accessibility counters this “paradigm for exclusion” by stressing equal rights, equal opportunities, and civic education. Ultimately, accessibility allows us to address democracy and equal opportunities in a new way, providing the public with a new vision of the world in which they live and want to participate. Throughout this chapter we address the laws, regulations, and guidelines that have been published to increase accessibility. Laws and regulations are definitely needed if accessibility is to occur (sadly, some people will only do it if it is required), but rules are not enough. The gap between the technology and the user can be wide, and only humans know what humans need.

WHAT’S ALL THIS ABOUT A “WORLD” WIDE WEB?

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Thus, automated systems for checking a Web page are helpful in identifying accessibility problems, but they are not foolproof. (Some readers may be familiar with an early page-checking tool, Bobby. Although Bobby no longer exists, many other similar tools are still available. We discuss the advantages of functional accessibility shortly.) For example, the Web accessibility standards require that every Web page should have a title. A software program can determine if there is a title, but it cannot know if the title makes any sense or has anything to do with the content. A page checking program would approve our Web page if it saw “Joe and Patrizia’s Page” as the title, but it would approve anything if it were in the right place, even something that didn’t make sense, like the title spelled backward: “egaP s’aizirtaP dna eoJ.” As a result, there is an effort to link usability and accessibility—that is, combining good Web page design with accessibility. Such linkages emphasize “functional accessibility,” which is based on how users with disabilities actually use the Web, not merely on complying with standards. To see what can at times be a rather humorous illustration of the limitations of standards compliant accessibility, go to Juicy Studio’s Web page at http://juicystudio.com/experiments/ invalid.html (Juicystudio.com, n.d.). This page is both compliant with the WCAG 1.0 standards (discussed shortly) and would be almost completely worthless in providing useful information to someone who is blind. The purpose of this review is to provide an overview of what is being done in several countries around the world regarding Web page accessibility. We will concentrate on the United States, Europe, and Japan because these areas are leaders in technology and are also taking the lead in accessibility. Other countries are quickly moving to improve accessibility, however. Readers should check what in being done in their countries and compare it the countries identified here. With the information in this review, interested readers can press for improvements in accessibility and make informed recommendations to their colleagues, communities, and governments.

THE UNITED STATES One of the first pieces of legislation to address equal access to society by persons with disabilities was Section 504 of the Rehabilitation Act of 1973. Although Section 504 predates the Web by more than a decade, it did establish the basis of civil rights protection for persons with disabilities (Waddell, 2006a; Wright, 1980). Section 504 prohibited discrimination of persons with disabilities in public and private programs and services that received federal funding (Rehabilitation Act Amendments of 1998, 29 USC § 794). From this beginning, other legislation was to follow, most notably the ADA (42 USC § 12101), which extended prohibitions against discrimination to the private sector. Although the two events were unrelated, it is an interesting coincidence that 1990 was also the year typically given as when the Web was founded by Tim Berners-Lee and Robert Cailliau (Berners-Lee, 1999). Thus, the disability rights outlined in the ADA have been linked with the growth of the Web since their beginnings. The Telecommunications Act of 1996 (47 USC §§ 153, 255) was the first revision of national communication policy in over 60 years (Waddell, 2006a).

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Section 255 of that act required vendors of telecommunication services to make their products accessible to people with disabilities, if it is “readily achievable,” that is, if the changes could be accomplished without significant expense or difficulty (Access Board, 1998; Waddell, 2006a). The following year, the World Wide Web Consortium’s (W3C; the group that sets Web standards) Web Accessibility Initiative (WAI) held its first technical meeting on accessibility and the development of Web accessibility standards (W3C, 1997). Since that time, the WAI has expanded and issued additional Web Content Accessibility Guidelines (WCAG) (currently version 2.0 is being finalized). These guidelines identify specific techniques needed to facilitate the use of Web pages by persons with disabilities and those using assistive technologies (Thatcher et al., 2002; Thatcher et al., 2006). The guidelines identify three levels of priority for Web page developers: Priority 1: A Web content developer must satisfy this checkpoint. Otherwise, one or more groups will find it impossible to access information in the document. Satisfying this checkpoint is a basic requirement for some groups to be able to use Web documents. Priority 2: A Web content developer should satisfy this checkpoint. Otherwise, one or more groups will find it difficult to access information in the document. Satisfying this checkpoint will remove significant barriers to accessing Web documents. Priority 3: A Web content developer may address this checkpoint. Otherwise, one or more groups will find it somewhat difficult to access information in the document. Satisfying this checkpoint will improve access to Web documents. (WAI, 1999, section 4. Priorities; emphasis in original) In 1998 the Rehabilitation Act was amended and a new provision was added that related directly to accessibility of electronic media—Section 508. Section 508 requires that federal agencies and those doing business with the federal government adhere to basic Web accessibility guidelines, which are at a higher standard than the Telecommunications Act. Section 508 requires that: When Federal agencies develop, procure, maintain, or use electronic and information technology, Federal employees with disabilities have access to and use of information and data that is comparable to the access and use by Federal employees who are not individuals with disabilities . . . [and] that individuals with disabilities, who are members of the public seeking information or services from a Federal agency, have access to and use of information and data that is comparable to that provided to the public who are not individuals with disabilities. (Section 508, §1194.1)

In December 2000, Section 508 became a requirement for all the federal agencies and offices in the United States with the publication of the Electronic and Information Technology Accessibility Standards (Access Board, 2000). These standards required products be accessible to persons with disabilities. The standards also called on those doing business with the federal government to make their products accessible unless doing so would create


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an “undue burden,” a much tougher standard than “readily achievable” (in the Telecommunications Act), as the criteria for an undue burden occurs only when there is a “significant difficulty or expense” related to implementation of the standard (Section 508, §1194.4). Although Section 508 applied to the federal government and its contractors, the ADA was already in effect, and it prevented discrimination by the private sector (Waddell, 2006a, 2006c). With the implementation of the Section 508 guidelines, Web developers now had specific legal standards for developing accessible Web pages in compliance with the ADA. Web pages are defined as Section 508 compliant if they conformed to either the 16 standards identified in §1194.22(a) through (p) or to the WCAG 1.0 Priority 1 checkpoints plus §1194.22(l) through (p) (WAI, 1999). The implication of Section 508 is that it has become the de facto standard for minimal Web accessibility. Unfortunately, the application to the ADA to Web pages is not as straightforward as reading Section 508 might suggest. The Department of Justice has ruled that Web pages are included in “places of accommodation,” and consequently must be accessible (Waddell, 1999; Letter from Deval L. Patrick to Senator Tom Harkin, 1996, www .usdoj.gov/crt/foia/tal712.txt). Nevertheless, two questions arise about the ADA and Web page accessibility. First, are inaccessible Web sites a form of discrimination by public entities (Title II)? Second, is the Web a place of public accommodation, and therefore the ADA applies to private institutions (Title III)? The answer to the first question seems to be “yes.” Inaccessible Web sites prevent effective communication, which is prohibited (see 28 CFR 35.160(a)). The answer to the second question is, “It depends.” The U.S. Courts of Appeal for the First, Second, and Seventh Circuits have said the Web is a place of public accommodation; the Third and Sixth Circuits have said it is not. Thus, although the results of litigation have been mixed regarding the private entities covered under Title III (and many cases are settled out of court), the record seems clear that many institutions in the United States catering to the public (e.g., public colleges and universities and vendors to the federal government) are required under Title II of the ADA to provide communication that is timely, accurate, and appropriate (U.S. Department of Education, Office of Civil Rights, 1997; Waddell, 2006b). On August 27, 2008, the lawsuit between the National Federation of the Blind (NFB) and Target was settled with Target agreeing to provide a $6 million fund for claims and to make its Web site accessible (NFB, 2008a). The Target Web site will be certified by NFB through its Nonvisual Accessibility Web Certification program (NFB, 2008b).

THE EUROPEAN UNION In 1999 the European Commission began to developing an action plan: eEurope—An Information Society for All. At the Council of Lisbon in March 2000, the heads of the 15 countries that were then members of the European Union (EU) decided to invest in the Internet and other new technologies to spread the benefits of the information society to all Europeans (Bertini,

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2004a, 2004b). The key objectives outlined in the eEurope Action Plan 2002 were: 1. Bringing every citizen, home, school, business, and administration into the digital age and online. 2. Creating a digitally literate Europe, supported by an entrepreneurial culture ready to finance and develop new ideas. 3. Ensuring the whole process was socially inclusive, built consumer trust. and strengthened social cohesion. (Council of the European Union, 2000a) The 10 points articulated in eEurope Action Plan 2002 promoted the formation of a technologically sophisticated population, with no one excluded from the new social and economic system. Moreover, the proposal supported the increased use of computers and the Web, with an eye on reducing costs while expanding services, including services to persons with disabilities (Council of the European Union, 2000b). Finally, the plan recommended: “Public sector Web sites and their content in Member States and in the European Institutions must be designed to be accessible to ensure that citizens with disabilities can access information and take full advantage of the potential for e-government” (Council of the European Union, 2008b, p. 18; emphasis in original). To reach this end, the council approved a plan for e-accessibility: “To achieve the ‘Information Society for all,’ people with special needs need to have the best possible access to information technologies. eEurope proposes several actions to promote ‘Design for all’ approaches and the adoption of the Web Accessibility Initiative guidelines for public Web sites” (Council of the European Union, 2000c). Subsequently, the Commission of the European Communities (2001) published the eEurope 2002: Accessibility of Public Web Sites and Their Content, which recommended adopting the WAI guidelines. In 2005, a follow-up to eEurope 2002 was initiated: eEurope Action Plan 2005. The 2005 plan was designed to continue the objectives established for 2002, but sought to add improvements to technological infrastructures including the spread of broadband connectivity to promote electronic services (e.g., “e-learning,” “e-health,” and “e-commerce”) (Bertini, 2004a; European Commission, 2007). Building on these earlier efforts, another strategic action plan was put forth by the European Commission to follow up on the work of previous initiatives and to plan a conference to be held in Lisbon in 2010: the Europe’s Information Society for 2010 or i2010 (Europe’s Information Society, n.d.). The i2010 plan takes into consideration the uniqueness of the European market and seeks to encourage openness and competition. At the same time it strengthens innovation and investment in the hope of finding new information technologies and communication methods that will produce a European society founded on the inclusion of everyone while giving priority to the improvement of public services and the quality of life. Unfortunately, one of the main problems in Europe is that the laws and requirements vary in the individual countries. Although based on the same


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guidelines and the same principles (i.e., the WCAG 1.0), the laws and regulations of the individual states are not perfectly compatible, with each country emphasizing different aspects and priorities of the guidelines defined by the WCAG. Furthermore, all EU member states do not have a specific law concerning information accessibility, resulting in a technical and normative scenario that is fragmented. Consequently, the need for common guidelines and a unified appraisal methodology has been recognize (Bertini, 2004a, 2004b). Thus, the EU has developed a “harmonized European methodology for evaluation and benchmarking of web-sites” (Waddell, 2006b, p. 558) through the WAB Cluster. The aim of the WAB Cluster is to pull together three initiatives that will (a) create a European accessibility certification (Support-EAM, n.d.), (b) develop the Unified Web Evaluation Methodology (UWEM) under W3C/WAI supervision “to assess the accessibility of Web sites against the recommendations of W3C/WAI” (Support-EAM, n.d.) and develop its own Web accessibility validation logo; (c) build effective instruments (benchmarks or the “BenToWeb”) for the appraisal of Web pages (BenToWeb, 2006), and (d) create an European Internet Accessibility Observatory (EIAO), which is “a data warehouse providing a basis for benchmarking, policymaking, research and actions to develop accessibility to Internet” (EIAO, n.d.; WAB Cluster, 2005). By way of a summary, we add this quote from the WAB Web site, which describes the UWEM and the WAB Cluster as: The result of a joint harmonization effort by 23 European organizations in three European projects combined in a cluster called the WAB Cluster. They have developed UWEM to ensure that large scale monitoring and local evaluation are compatible and coherent among themselves and with the Web Content Accessibility Guidelines from W3C/WAI.

Notwithstanding these unifying efforts, centralization is still less true for the EU than the United States, and as a result, individual countries within the EU have different laws addressing Web accessibility. In the next section, we present some of the major laws and regulations of some EU countries.

The United Kingdom Before the European Union began to promote accessibility actively, the United Kingdom approved the Disability Discrimination Act (DDA) in 1995. Although the DDA did not address Web accessibility per se, it did prohibit discrimination in education, employment, access to services, and housing, as well as allowing the government to set regulations about transportation. In 2000, the Disability Rights Commission (DRC) was created which, in addition to other activities, monitors the DDA and has the power to investigate Web page accessibility. In 2005, the DDA was updated to extend its provisions to the private sector (Directgov, n.d.). On October 1, 2007, the DRC, along with the Commission for Racial Equality and the Equal Opportunities Commission, was consolidated into the Equality and Human Rights Commission. Effective in 2002, the Code of Practice: Rights to Access to Goods, Facilities, Services and Premises specifically referenced Web accessibility. Sections 5.23

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(services to persons with visual impairments) and 5.26 (services to persons who are deaf) both state that “it might reasonable to provide to ensure that services are accessible might include . . . accessible Web sites” (Webcredible, 2005). Officially, since 2004 all Web sites in the United Kingdom that offer services to the public must be accessible. Does this mean that, at the time of this writing, all Web pages affected by this legislation are accessible? In 2004, the DRC reported on the state of Web accessibility. The result was that over 80 percent of the Web sites examined failed to meet even the most basic WAI guidelines and that visually impaired users who used screen readers were particularly disadvantaged (DRC, 2004). Nevertheless, as a result of the British initiative, other countries of the European Union began to move in the direction of accessibility and began developing legislation for its promotion.

Italy The Italian accessibility law resulted from a collaboration between the government, technicians, and consumers with disabilities. The impetus for the law arose when 2003 was proclaimed the European Year for Persons with Disabilities. On January 9, 2004, Law 4 was passed (in English it is titled, Provisions to support the access to information technologies for the disabled, also known as the Stanca Act) (Pubbliaccesso, 2004). The law outlined accessibility levels and technical requirements as well as the methods to be used to evaluate Web sites (Bertini, 2004a). Subsequently, the Decree of the President of the Republic, March 1, 2005, no. 75, implemented the regulations for the Stanca Act. This decree was followed by the Ministerial Decree of July 8, 2005, which defined the technical methodologies and evaluation programs to be used. The National Information Center for Public Administration (CNIPA; Centro Nazionale per l’Informatica nella Pubblica Amministrazione) supervises the application of these regulations and administers the certification of the accessibility logo, which documents level of compliance. Law 4 covers many areas but provides the following guidelines related to accessibility: (a) bidding, those meeting accessibility requirements receive preferential status; (b) contracts, new and modified Web sites must be accessible; (c) contract renewals, contracts will not be renewed if accessibility requirements are not met; and (d) government grants for information technology goods and services used by public workers must be accessible (Waddell, 2006b). The review and certification of a Web site’s accessibility includes both a technical and a subjective component. The technical requirements are based on WCAG 1.0, Section 508, the International Organization for Standardization specifications and experience gained by CNIPA. First, unique to Italian law, certification also requires a subjective evaluation by persons with disabilities and other end users. Web site evaluations must be conducted by registered, independent reviewers, not government employees. There is a catch, however—subjective evaluations and manual testing certification are not compulsory for public bodies. Therefore, most Web sites are reviewed


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using the automated tools to assess page accessibility, then, instead of subjective evaluations performed by certified evaluators, these sites can “autocertify” themselves, with predictable results (Bertini, 2004a). Private companies are not subject to Law 4, but they can ask for an official evaluator to perform the manual testing and certify their Web sites. This certification activity is subject to payment. After both an automated certification and a formal, subjective certification, an accessibility logo based on level of compliance can be can be approved by the Department of Innovation and Technologies (see http://www.pubbliaccesso.gov.it/normative/dm080705-e-en.htm for the logos). The CNIPA monitors continued compliance, and, as of August 29, 2008, 227 public Web sites had been authorized to use the accessibility logo with more continually being added (see the current list at http://www .pubbliaccesso.gov.it/logo/elenco.php?order=date). Nevertheless, given the large number of Web sites that exist, much work remains to be done. The Italian law also designated sanctions for persons responsible for the administration of Web sites and for companies working for public bodies that do not make their site accessible. Public officers who approve contracts that do not take accessibility into account can even be fired, although there has been no such case brought at the time of this writing. Companies working for public bodies that fail to make public Web sites accessible can loose their contracts with the government. However, these sanctions have rarely been applied (Brajnik, 2005).

Portugal Although Portugal was not one of the first countries to have national accessibility legislation, the situation there is unique, because the effort began not with the government but from a consumer. Credit for bringing accessibility to the fore in Portugal goes to Francisco Godiñho, who, in 1993, started a petition for Web accessibility (Bertini, 2004a). As a result, on July 19, 1999, the Ministry of Science and the Technology approved of the Resolution of the Council of Ministers no. 97/99: Accessibility of Public Administration Web Sites for Citizens with Special Needs (Presidency of the Council of Ministers, 1999). The law is monitored by the minister for science and technology and requires that public directorates, departments, and public corporations (including universities, and television and radio stations) have accessible Web sites. The law states: “(a) Reading can be performed without resorting to sight, precision movements, simultaneous actions or pointing devices, namely [the] mouse. (b) Information retrieval and search can be performed via auditory, visual, or tactile interfaces (art 2, of RCM97/99)” (quoted from Waddell, 2006b, p. 575). Finally, an accessibility logo from the U.S. National Center for Accessible Media (see http://ncam.wgbh.org/webaccess/symbolwinner. html) can be placed on Web sites complying with the WCAG 1.0 guidelines.

Spain Spanish Law 51, December 2, 2003, Regarding Equality of Opportunities, Nondiscrimination, and Universal Accessibility for People with Disabilities

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(Ley 51/2003, de 2 de Diciembre, de igualdad de oportunidades, discriminación y accesibilidad universal de las personas con discapacidad) requires the Iberian Public Administration to adapt the WCAG guidelines. The law prescribes that accessibility be implemented when creating new Web sites and foresees that within four to six years all new online sites will be accessible (Waddell, 2006b). A particularly interesting aspect of the Spanish legislation is the creation and training of new professionals specializing in accessibility. Within two years of the implementation of the law, the government was to define the curricula on the “Design For All,” for adaptation by schools and universities (Information Society Technologies, 2004).

Germany In May 2002, Germany approved a law for equal opportunities: the Bundesbehindertengleichstellungsgesetz (Federal Obstruction Equalization Law; BBGG), which has served as the basis for the development of specific accessibility legislation. The BBGG was followed in July 2002 by the Barrierefreie Informationstechnik Verordnung (Ordnance on Barrier-Free Information; BITV), which prescribes that governmental information is accessible and consistent with the WCAG guidelines. Also in July 2002, the German government created a task force of support to develop Web standards, Aktionsbündnis Barrierefreie Informationstechnik (ABL). The ABL offers advice and services to help agencies in adopting the BITV, with the aim of increasing the law’s effectiveness. The German standardizations authority, the DIN-CERTCO, is developing a national logo for accessibility (Waddell, 2006b). The BITV stated that federal government Web sites and sites that expressly addressed persons with disabilities had to be accessible by the end of 2003. Moreover, private companies were obligated to negotiate with registered organizations for persons with disabilities. Although they were obligated to negotiate, it is important to note that they were not required to reach an agreement. The Web sites governed by the BITV must comply with the WCAG 1.0 standards by the end of 2005.

France Accessibility in France is part of a wider bill on equal opportunities for persons with disabilities. In 2005, France passed law no. 2005-102; Article 47 required all public sector Web sites to conform to international standards for Web accessibility. These public sector Web sites had three years to become compliant, and sanctions were defined by the Code of Practice. Although the WCAG standards are only indirectly referenced here, guidelines were developed with the assistance of the BrailleNet Association (see www.braillenet .org), which also conducts Web site evaluations for public sites. The guidelines also included requirements for usability based on the work of Jakob Nielsen, a well-known author on Web usability (see his Web site at www.useit.com). Like Italy, France uses a logo to identify levels of Web sites accessibility—the


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AccessiWeb label (see www.accessiweb.org/fr/label_accessibilite). However, private entities are not required to affix the logo.

Other European Countries Some countries in northern Europe (Belgium, Norway, Luxemburg) have independently developed action plans to promote accessibility, but they do not have anything specific for the Web, as of this writing. Drafts of initiatives continue to evolve (see ec.europa.eu/information_society/policy/ accessibility/z-techserv-web/index_en.htm and www.w3.org/WAI/Policy/ for a summary). The same situation exists in the Netherlands, where a specific law is not present but an “obligation for accessibility” exists. In 2001, the Ministry of Health, Welfare, and Sport started the Drempels Weg (“away with barriers”) initiative was a call for action. In 2005, the Drempels Weg was replaced by the Quality Mark, which is based on the 16 WCAG 1.0 checkpoints. A site can receive the Quality Mark for meeting fewer than all 16 checkpoints, with the number of checks passed indicated on the Mark (Waddell, 2006b). The situation varies in the 10 new countries that have entered the EU since May 1, 2004. In an attempt to standardize the technology level and overcome the deep differences between the new members of the union, the European Commission developed the action plan eEurope 2003. The new countries, unfortunately, are still not totally aligned with the commission’s action plan, although some, like Hungary, are beginning to discuss accessibility. Specific legislation, however, is still in the future, but the WAB Cluster and UWEM guidelines give these countries a place to begin.

ACCESSIBILITY IN JAPAN Japan recognized the need for accessibility long before the WCAG appeared in 1999. As far back as 1970, Japan addressed the needs of persons with disabilities in law no. 84, Fundamental Law for Disabled People, which affirmed: “Providers of telecommunications and broadcast services shall, on the basis of the principle of social solidarity, endeavor to facilitate their use by disabled persons” (Disability Information Resources, 1997, Article 22-3, #2). As soon as the W3C released its guidelines in 1999, the Japanese Ministry of Postal and Telecommunication created the Telecommunication Accessibility Panel to control and check public Web sites for accessibility. Their first report on accessibility in May 2000 identified the following major issues: • Japan is a rapidly aging country, and over a quarter of the population will be over the age of 65 by 2015. • Information and computer technology can improve the quality of life for the elderly and persons with disabilities. • Information and mobile technologies (e.g., cell phones) offer opportunities for the elderly and persons with disabilities to access information more readily. (Ministry of Postal and Telecommunications, 2000).

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Although many understood that new technologies, such as cell phones, could improve the lives of the elderly and persons with disabilities, it was also recognized that without standardization and the guidelines that produced it, these technologies would be of limited use. The result was that on June 21, 2004, the Japan Industrial Standard (JIS) X 8341 was released as Guidelines for older persons and persons with disabilities—information and communications equipment, software and services. This is a living document with additional parts being added as needed. As of this writing, there are five parts, but Part 3, Web Contents, focused on Web accessibility. Part 3 of the JIS X 8341 was based on the previous work of the W3C, the WAI, and Section 508 in the United States (Itzuka, 2004; Koga, 2006). It differed from Section 508, however, in that X 8341 covers all technologies and is conceptual rather than technical in focus. Consequently, Part 3 provides standards, but without specific technical details. For example, standard 5.4.a says that images shall also have alternative information available, but it does not mandate alternative text elements or long descriptions in HTML (Yamada, 2004). As Yamada states: “The JIS standard does not specify requirements in a quantitative manner. However, it gives general guidelines to industry that are then used like . . . standards” (p. 12). A unique problem Japan must address is linked to the language and the writing system. Japanese can be written using kanji—originating from the Chinese idiographic characters—or one of two syllabic systems—hiragana and katakana. Moreover, the typical writing orientation is from right to left in rows, or from top to bottom in columns. Furthermore, today a new horizontal writing system running from left to right is also used. The result has been that the writing system has made it nearly impossible to apply Western, English-based evaluation tools to Japanese Web sites (Bertini 2004b, Uchida et al. 2002). To complicate evaluation even more is that in Japanese there are no empty spaces between words. Not only does this lack of spaces make it difficult for screen readers to read the text properly, the lack of empty spaces between characters is a violation of checkpoint 10.5 of WCAG 1.0 (Uchida et al., 2002). Finally, kanji further complicates reading the page because the meaning of a character can be interpreted in different ways depending on the context in which it is used. Consequently, although Japan is a technologically sophisticated country, they face many obstacles to accessibility.

CONCLUSION This chapter sought to summarize some of the major legislation and initiatives designed to advance the accessibility of the Web. The countries discussed here recognize the need for a technologically literate society that takes advantage of the skills and abilities of all of their citizens. They also recognize that for their citizens to reap the benefits of the information society the Web must be open to all. The first step that governments could take is to require their own Web sites be accessible. They need to lead by example. Unfortunately, compliance is uneven. The situation for private entities is even worse, although exact statistics are impossible to find.


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Many countries have already adopted specific accessibility initiatives, demonstrating the realization that they need to use all the human potential in their societies and support the democratic ideal of opportunity for all. Countries are realizing that accessibility aids not only persons with disabilities but also improves usability by making information easier for everyone to use and apply. As a consequence, more countries are adopting the WCAG guidelines developed by the WAI, and many are supplementing these guidelines with their own rules and regulations that reflect the unique situation in each country. Many countries are also creating logos that reward those who make their Web sites accessible. We hope this trend will continue. Although this chapter has focused on compliance to guidelines, we are already seeing a melding of good Web design principles and accessibility. More and more we expect to see “functional accessibility” augment “standards compliance” accessibility. Functional accessibility does not rely on using an automated program to check for errors in the HTML code, but instead uses actual users to test the functionality of Web pages. We believe that functional accessibility is the key to usability for everyone. The joining of functional accessibility and usability is reflected in the universal design movement (Center for Universal Design, 2006). It is our opinion that the blending of usability, functional accessibility, and standards compliance will lead to Web access for all persons. The Center for Information Technology Accessibility at the University of Illinois at UrbanaChampaign has established itself as a leader in this area by developing Web accessibility best practices (Illinois Center for Information Technology Accessibility [iCITA], 2008) and the Functional Accessibility Evaluator (iCITA, 2007). Interested readers should look to these sites for examples and additional help. An informed public needs to be at the forefront of this movement. A first step in this effort is to learn about what is being done in other nations, particularly those at a similar technological level as one’s home country. Finally, we believe that Web accessibility is a basic democratic principle—that Web accessibility is necessary for inclusion and participation necessary to achieve the democratic ideal of equal opportunity for all. We hope this review is a small step in identifying the need for making information accessible to persons with disabilities around the world.

NOTE A different version of some of the material in this chapter appeared in an article by Wheaton and Bertini (2007).

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Waddell, C. D. (2006a). US Web accessibility law in depth. In J. Thatcher et al. (Eds.), Web accessibility: Web standards and regulatory compliance (pp. 511–544). Berkeley, CA: Friends of Ed. Waddell, C. D. (2006b). Worldwide accessibility laws and policies. In J. Thatcher et al. (Eds.), Web accessibility: Web standards and regulatory compliance (pp. 547–579). Berkeley, CA: Friends of Ed. Waddell, C. D. (2006c). Overview of law and guidelines. In J. Thatcher et al. (Eds.), Web accessibility: Web standards and regulatory compliance (pp. 53–67). Berkeley, CA: Friends of Ed. WAB Cluster. (2005). Web Accessibility Benchmarking Cluster. Retrieved February 18, 2008, from www.wabcluster.org. Web Accessibility Initiative. (1999). Web Content Accessibility Guidelines, 1.0. Retrieved March 21, 2007, from www.w3.org/TR/WAI-WEBCONTENT. Webcredible. (2005, July). Disability Discrimination Act and Web accessibility. Retrieved March 21, 2007, from www.webcredible.co.uk/user-friendly-resources/ web-accessibility/uk-Web site-legal-requirements.shtml. Wheaton, J. E., & Bertini, P. (2007). Web accessibility in Europe and the United States: What we are doing to increase inclusion. Rehabilitation Education, 21, 259–268. World Wide Web Consortium. (1997). Agenda: WAI first technical meeting. Retrieved February 18, 2007, from www.w3.org/WAI/References/970522/agenda.html. Wright, G. N. (1980). Total rehabilitation. Boston: Little, Brown. Yamada, H. (2004). Disseminating concepts of information and communications accessibility to the world. Retrieved August 29, 2008, from www.i-ise.com/ accessibility/pdf/yamada0403.pdf.

CHAPTER 8

Disability, Legal Mobilization, and the Challenges of Capacity Building in Sri Lanka Fiona Kumari Campbell

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n Sri Lanka, disability is mainly a result of war, natural disasters, aging populations, and large numbers of people undertaking high-risk work. Additionally, Sri Lanka has one of the highest suicide rates in the world, and 23 percent of the population live in poverty. Over an 11-year period, the Sri Lankan government has passed a raft of legislation and policies aimed at fostering the participation of disabled people in civil society. Such changes in Sri Lankan legal and policy frameworks are part of the country’s ongoing alignment with the United Nations Standard Rules on Equalization of Opportunities for Persons with Disabilities (1993) and United Nations International Convention on the Rights and Dignity of Persons with Disabilities (2006, GA/A/61/6111). This chapter discusses these developments in terms of legal education and mobilization by disabled people, the enforceability of disability related social policy and laws, consciousness-raising about disability, and capacity building using a community-based rehabilitation model of leadership training. People with disability throughout the world have been excluded from planning, policy implementation, and political processes for many reasons, the foremost being a lack of power. Significant (able-bodied) stakeholders representing nongovernment organizations (NGOs) or institutional interests in disability development have had greater power. Postcolonial writers have argued that one of the chief mechanisms of power is control of knowledge and cultural production. Sri Lankan disability activists are required to critically assess overseas development models and conceptualizations of disablement, and at the same time work with Sri Lankan educational authorities to further build capacity at the local village level. To undertake this task, Sri Lankans with disability

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need to obtain the requisite levels of leadership skills and knowledge to build capacity. The island of Sri Lanka (known in late colonial times as Ceylon) with a mass area of 1,340 km (832 miles) lies on the far southern edge of the Indian subcontinent. Sri Lanka has a population of around 20,926,315 (Central Intelligence Agency, 2008). An estimated 70 percent of the population are Theravada Buddhist, 15 percent Hindu, 8 percent Christian, and 7 percent Muslim. Throughout ancient and colonial times the island became a convergence point for trade among kingdoms and the intermingling of various civilizations and cultures. Sri Lanka is also now a country that has been under the grip of a terrorist guerrilla insurgency for 24 years, resulting in large portions of the government budget being spent on defense and a high prevalence of war-induced physical, cognitive, and psychological disablement. Developments in disability law and policy are produced within this broader global context and are constrained by “geodisability knowledge,” the project to codify, universalize, and thus systematize disability. Twenty-three percent of the Sri Lankan population live in poverty (National Council of Economic Development [NCED], 2005, p. 7). Sri Lanka is ranked 93rd on the Human Development Index, a comparative measure of poverty, life expectancy, and education used by the United Nations and has a medium human development ranking (NCED, 2005).

DISABILITY, SRI LANKAN STYLE In the Sri Lankan context, approaches to meeting the needs of disabled people through service delivery and more recently in policy development and law reform, have been shaped and influenced by the nation’s 500-year JudeoChristian colonial heritage (including models of welfare and charity) and global, liberal (Western) conceptual frameworks instigated through the United Nations. Identifying specific representations of disability in the colonial period remains difficult because of the paucity of historical research undertaken around this theme. A caveat to the study of disability relates to the necessity of thinking about the making of disability through the lens of the making of nation making. Ranajith Guha (1989) has argued that in the Indian experience, colonials in their official records tended to view huge segments of the (non-European) population as pathological. In the process of representing homegrown histories of disability and the ways the empire interceded in responses to disabled people, the study of colonial medicine and special education may provide a glimpse into the colonial governance of disability and the legacy of institutional structures and approaches to disability in contemporary Sri Lanka. Caution is needed in assuming that particular versions of “local knowledges” are “pure” and authentic rather than being fabrications of knowledges developed by outside experts who assume that certain ways of doing things are “local.” It is beyond the parameters of this chapter to fully discuss the transmission of foreign knowledge into an Indigenous environment, suffice it to say that

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researchers on the colonial period have argued that a Sri Lankan response to foreign interventions often involve a certain amount of skillful mimicry and refashioning. As Perera (2002) noted in a different (colonial) context: Imagination was central to indigenisation as indigenes could only adapt their daily practices within colonial society and a space of their own imagination. . . . These structures did not fully overturn the colonial system, they amounted to the appropriation and reinscription of colonial social and spatial structure by the Ceylonese. (p. 1718)

Colonization involves the bringing of laws and religious (predominately Protestant Christian) ethos. In 1685, the chief physician of the Dutch East India Company (VOC) built a large asylum at Hendala to house persons with leprosy (Hansen’s disease) (Uragoda, 1987). The Hendala Hospital remains the longest continuous running disability facility in Sri Lanka.1 What is clear is that social welfare infrastructures for Christian churches and later Buddhist organizations were adapted to service provision for disabled people. Padmani Mendis (2004) argued that it was Christian missionaries who introduced the concept of special education for disabled people in the early 20th century. However as Dissanayake (1996) pointed out, this education was developed without consultation with the local population. In Sri Lanka, what has been termed Protestant Buddhism has shaped community responses to social problems at the level of beliefs and community development structures. Gombrich and Okeyesekere (1988) argued that in 19th-century Ceylon. in response to the rising influence of colonial Christianity on social and political life, Buddhism transformed itself not only by acquiring assumed Protestant habits but also through mimicry of welfare and missionary organizational structures. Colonial Buddhism was strongly influenced by the enlightenment values of the British imperialists, and as such incorporated the characteristics of Protestant Christianity. At the same time, Protestant Buddhism represented a modern Buddhist revival and protest against the privilege and domination by the British in general and Protestant Christian missionaries in particular. This process of assimilation and incorporation occurred on an ideological level as well as social and cultural levels. The ethos of contemporary Buddhism imbued in the politics of the Sri Lankan State, namely, karuna (translated as “loving kindness”) is loosely construed along the lines of the Christian concept of charity, where disabled people are largely viewed as passive recipients deprived of volition and agency—making capacity building a nonsensical task. What is the contemporary situation of people with impairments in Sri Lanka? At the level of knowledge, classification coding, and self-identification (identification as a disabled person in differentiation from a “beggar”), the counting of Sri Lankans with disability is a vexed question. At a recent conference on Disability and Development (Diriya’07),2 disability was spoken of by some in terms of being 5 percent of the population and by others as being up to 20 percent. Social planning in the area of disability is made difficult by a shortage of information about the scope and needs of Sri Lanka’s disabled constituency (Asian Development Bank, 2005; Japan International

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Cooperation Agency, 2002). Like many other nations, there are debates about the boundaries and borders of disability definitions and the usage and application of international (Western oriented) instruments of measurement and coding to decide who is disabled and who is not (Altman, 2001; Campbell, 2001; Lord, 2004). The major causes of impairment in Sri Lanka are through an aging population, war, malnutrition, and the participation by mainly poor women from rural villages in high-risk employment as guest workers in the Middle East. Sri Lanka nationally and officially uses two definitions of disability—one drawn from legislation, the Protection of the Rights of Persons with Disabilities (no. 28 of 1996). Section 37 reads, a “person with disability means any person who, as a result of any deficiency in his physical or mental capabilities, whether congenital or not, is unable by himself to ensure for himself, wholly or partly, the necessities of life” (Ministry of Social Welfare, 2003, p. 9). The other definition, more functional in nature can be found in the National Census of 2001 (Ministry of Social Welfare, 2003). Despite these enumerative and conceptual limitations, a specific Sri Lankan pattern of impairment can be described: there is an estimated population of 900,000 people with disabilities (Japan International Cooperation Agency, 2002; Wijewardene & Spohr, 2000). Although the incidence of physical disability produced by the civil war has not been enumerated, estimates by the Asian Development Bank (2005) suggest in the vicinity of 100,000 persons. There are also high levels of mental illness, including war-induced posttraumatic stress disorder. Fernandopulle (2002) argued that a more far-reaching approach to mental health is required, taking into account the consequences of living with years of civil and military conflict. It is estimated that 27 percent of the population in conflict areas in the north eastern province experience severe posttraumatic stress impairments (Asian Development Bank, 2005; De Silva, 2002; Somasundaram, 1996). Although some empirical data suggests that 2 percent of the population experience severe forms of mental illness, an additional 10 percent of persons experience a range of impairments from phobic states to depression (Mendis, 1998; Thalagala, 2000). Suicide ranks seventh in global statistics, with a rate of 31 per 100,000 people. Thalagala (2000) estimated that 46 percent of these suicides are due primarily to depression.3 Another UK-based medical study undertaken in cooperation with Anuradhapura General Hospital documented the increase over the past five years in deliberate self-harm through the ingesting of poisons (Eddleston, Sheriff, & Hawton, 1998; Faunce, 2005). Two thirds of individuals admitted for self-poisoning were less than 30 years of age. Some sociologists have argued that impairment or indeed death is produced by the absence of support systems for young people having difficultly coping with social and cultural expectations (De Silva, 1989; Kasturiaratchi et al., 1997). Sri Lankans have faced significant devastating events for decades. For instance, the 24-year war has not only produced significant levels of disablement, but there is uncertainty about what such high levels of disability have had on transforming attitudes toward bodily or mental differences on the part of nondisabled members of the community (De Silva, 2002). The tsunami in December 2004 produced more instances of disablement on


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already stressed communities and increased the exposure of villages to vast forms of foreign occupation of international NGOs (see Goonatilake, 2007). Anecdotal research has suggested that disabled people affected by the tsunami are hindered in their access to aid and excluded from restoration efforts (Oosters, 2005). The major impetus for law and social policy reform has resulted from pressure by external forces outside of the country and, to a lesser extent, advocacy of a fledgling homegrown disability rights movement. Although Sri Lanka established the first education program for children with a disability in 1912, policy development and legal reforms related to disability concerns have been slow in coming to fruition (Ministry of Social Welfare, 2003). In 1996, the Sri Lankan Parliament passed three significant pieces of legislation: the Human Rights Commission Act (no. 21 of 1996), the Protection of the Rights of Persons with Disabilities (no. 28 of 1996), and the Social Security Board Act (no. 17 of 1996). Such changes in the Sri Lankan legal framework are part of the country’s ongoing alignment with the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities. The Human Rights Commission Act established a new and permanent Human Rights Commission (HRC) for the country. The HRC performs a broad range of functions, from investigating and mediating human rights violations to advising the government on appropriate legislative and administrative procedures (Gomez, 1998). The following is a summary compendium of legislation and social policy action to date: • • • • • •

Mental Diseases Ordinance (as amended) 1873 Workmen’s Compensation Act (no. 31 of 1957) Trust Fund Act for the Visually Handicapped (no. 9 of 1992) Protection of the Rights of Persons with Disabilities Act (no. 28 of 1996) Social Security Board Act (no. 17 of 1996) Ranaviru Seva Act (no. 54 of 1999)

The Act for the Protection of the Rights of Persons with Disabilities came into effect on October 24, 1996, by proclamation in the Gazette of the Democratic Socialist Republic of Sri Lanka. The Act principally provided for the establishment of a National Council for Persons with Disabilities charged with the promotion, advancement, and protection of the rights of persons with disabilities in Sri Lanka. The Act however lacks specific mechanisms for the implementation and enforcement of the rights ascribed in the legislation, especially a process for the bringing of individual or group complaints.4 In addition to the above-mentioned legislation, the Sri Lankan government has developed a number of significant social policy documents which are likely to guide the development of the disability services sector and ongoing legislative reforms. The Sri Lankan government in 2003 introduced a social framework, the National Policy for Disability, to accompany that legislation (Ministry of Social Welfare, 2003). Globalization has meant that Sri Lanka, as an international player and developing nation, has little choice but to conform to new universal legal regimes. However, an enduring question is whether the social policy and

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legislative infrastructures are sufficiently resourced, equipped, and trained to undertake the enormous task of capacity building and change. Most of the current arrangements are patchy and lack coordination across the various government ministries. Planning in policy, procedures, and regulations related to soldiers with disabilities, people with mental illness, and the workers’ compensations system appears to be conducted without reference to planning in other areas such as NGO regulation, the National Disability Policy, and the definition of disability in the Protection of the Rights of Persons with Disabilities Act. Furthermore, there is no legislatively entrenched philosophical framework to underpin legal development in the area of disability that can be the benchmark for service delivery and the statutory incorporation of NGOs. I have identified four critical areas that need to be confronted to promote effective legal regimes: information access/knowledge, legal education, legal enforcement, and policy/legislative coordination. The next section examines some of these areas through a study of conceptual frameworks.

VITAL CONCEPTS: CAPACITY BUILDING? CBR? LEGAL MOBILIZATION? The steady eating away at one’s internal strength and the sapping of one’s will to resist are classic psychological phenomena exhibited in concentration camp victims. When such phenomena are reflected in the collective psyche of an entire country, and particularly in the behaviour patterns of its intellectuals, activists and the media, the time has come to be truly anxious. (Pinto-Jayawardena, 2006, p. 5)

Capacity building is firmly entrenched in the concept of civil society, an idea that originated from the influence of European philosophers like Rousseau, Hegel, and Gramsci (see Goonatilake, 2007, pp. 17–19). The discourses of civil society saturate development policy and technical literature. As Orjuela (2003) stated: [Civil society] is used to describe the fact that people meet, communicate, and organize in ways that are not established or controlled by the state, nor by kinship and family ties, and with purposes that are driven neither by the power logics of the state nor by market interests. In the civil-society arena, people voluntarily organize to defend common interests or work for social and political change. (p. 196)

In precolonial times until the late 1940s, such a version of civil society operated in Sri Lanka. From the 1950s until the late 1970s, under a form of quasi-state socialism, adopting the collectivist principle, the state became allpowerful and all-embracing as it acted as the benevolent provider of the needs of the people—citizens responded as passive receivers. Unlike the West, today, the state is not a significant actor in policy or service provision. Instead there are large numbers of unregulated, foreign nonstate actors that mediate, if not control, health care and social services in Sri Lanka (Chandraratna, 2003; Goonatilake, 2007; Wickramasinghe, 2006). Like many marginal groups,


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disabled people find that access to having their voices heard in public policy processes is often difficult due to the fact that the “disabled lobby” is perceived as an afterthought, deprived of an influential voice and therefore easily ignored. In Sri Lanka, this situation is magnified by a collective sense of despondency and cynicism about the current state of affairs in the country. As a highly politicized society, Sri Lanka has limited spaces for the emergence of a localized civil society. Traditionally, disabled people have been seen as passive recipients of services in need of competency training and deprived of agency. Sri Lanka has the full spectrum of disability-focused NGOs, a number of umbrella bodies,5 and disabled people’s organizations (DPOs).6 The range of predominantly overseas-funded and/or overseas-originated religious charities outnumbers these organizations.7 Additionally, there are a number of multilateral banks that actively support development projects.8 Although there have been shifts from a needs to a rights framework in social policy (in Sri Lanka, the 1996 policy and law reforms), this shift has not been extended to actively targeting leadership capacity building as part of an increasing level of self-determination by people with disability within society. I have argued for the necessity of ongoing leadership training and mentoring for and by disabled people to replenish DPOs for the task of building capacity for activism and development participation. Without this “passing on of the baton” to next generations of disabled people, power can become consolidated in the hands of a few individuals (antidemocratic in its own way), who, not having infinite lives, pass on, leaving a power vacuum in participatory governance, deskilling, and low self-esteem.

Capacity Building So what is meant by capacity building? The concept seems to be viewed in many different ways, from the government’s provision to the poor of the necessities of life (food, clothing, shelter) to a more expansive approach aimed at increasing marginalized people’s engagement with all aspects of civil society. Capacity building is predicated on the notion of inclusion. It is unclear what is meant by inclusion or an inclusive society in the context of Sri Lankan society, divided as it is by geographic (provincial, rural, urban), caste, ethnicity, religion, and gender divisions. Hyndman and de Alwis (2000) defined capacity building as a means of engaging and strengthening local knowledge and skills to make people’s livelihoods more secure. It implies outside intervention to augment or restore the well-being of persons adversely affected by any number of factors, including war, displacement, ecological disaster or state-sponsored dispossession. Capacity building builds on but departs from “development” in a number of key ways. It acknowledges the prior existence of economic relations and modes of making a living that can be strengthened or restored, rather than fixed by foreign expertise; and it implies a time-limited intervention on the part of those providing the external assistance assuming that sustainable livelihoods can either be restored or created in situ with appropriate planning. (p. 16)

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An agency-based notion of social capacity promotes empowerment, equity, and the voices of the downtrodden (Puri, 2004). Central to this configuration is an acknowledgment of underlying powerlessness (and not necessarily skilling) and the ways those with power can influence development goals and outcomes. One example of the application of this definition is AKASA, the Association of Women with Disabilities, whose chairperson, Anoja Sandanayake, is a member of the National Council for Persons with Disabilities (a government-established body). The group is located in the North-Central Province in the city of Anuradhapura, an ancient, poor, rural town that has experienced a deal of conflict due to the ongoing terrorist insurgency in the region. Their mission statement reads: We, women with disabilities too would like to lead our own lives. We believe that if given the correct opportunities and an enabling environment, we can be productive, contributing to Sri Lanka’s national development. However many women with disabilities are not given the training and the opportunities that they need for a meaningful life. (AKASA www.akasa.lk)

AKASA focuses on organizing women with disabilities into consciousnessraising groups at the village and district levels, vocational training aimed at self-employment, income generation (including training and micro-credit), counseling, advocacy, and rights training for members. Volunteers are trained as mediators to work with up to seven women at a time. With a small amount of funding from a Swedish NGO, AKASA has trained over 370 mediators. These small cluster groups will often come together as a village society with a formal decision-making structure and link up with delegates at a district level. From a small group established by one woman in 1995, AKASA has 800 active members, divided into cells across 10 subdistricts (Perry, 2003). The group is now working on mainstreaming the needs of women with disabilities into local poverty alleviation programs. When arguing that persons with disabilities are capable leaders, it is vital for persons with disabilities to speak and act on their own behalf. In this chapter, the term leadership is used to refer to the collective effort of groups of consumers to influence policy and legal reform through acquiring capacity. Dotted throughout the island, even in remote villages and communities of internally displaced persons, there are DPOs run by locals with disabilities. DPOs are formal social organizations made possible through the fostering of a community development approach based on community-based rehabilitation (CBR); rather than the professionally driven, commercialized approaches to rehabilitation in the West. CBR has been identified as an approach that if instituted across the provinces has the potential to restructure social protection mechanisms through its focus on investing in the skilling up of people. CBR emphasizes local control and leadership of disability programs by disabled people. In cooperation with the World Health Organization in 2004, the government developed a five-year Mental Health Plan for the northeastern provinces, an area particularly affected by bombing and military activity, based on CBR principles. Although not particularly popular in urban Western settings, CBR guides


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service development globally, especially in the so called developing world. In 1994, three UN organizations (ILO, UNESCO, and WHO) published a joint position chapter and compromised on a new definition of CBR: Community-based rehabilitation (CBR) is a strategy within community development for the rehabilitation, equalization of opportunities and social integration of all people with disabilities. CBR is implemented through the combined efforts of disabled people themselves, their families and communities, and the appropriate health, education, vocational and social services. (ILO et al., 1994)

This new definition stressed that CBR is a strategy within community development and is based on a broad social model of disability that recognizes disability’s relationship to the environment. At its core is the pledge to build up DPOs and facilitate human rights legal mobilization. If supported in their capacity building, DPOs can act as a conduit throughout Sri Lanka, training other disabled people in consciousness raising about disability. In other words, it is impossible to realize this model of CBR without the voices of disabled people individually and collectively being placed at the speaking center of development, research, planning, and implementation. CBR is not about setting up services run by allied health professionals in the community. The WHO in fact identified education and training of disabled people as a key element (WHO, 2003). In the South Asian subcontinent, CBR has been enthusiastically received with many field workers undertaking CBR training in India and through international government organizations (INGOs).9 Anecdotally, it is known that complex skills related to self-determination are underdeveloped in Sri Lanka, due to barriers such as lack of funding, transportation, limited knowledge of leadership training, and difficulties recruiting people for leadership roles (see Powers et al., 2002). Optimally functioning DPOs have the possibility to facilitate conscious raising among people with disability about disability concerns. Capacity building may also extend to financial assistance in the form of loan repayments to break the debt cycle experienced by many disabled serviceman (Kasturiaratchi & Jayawardena, 2004). CBR usually involves an effort to destigmatize persons with disabilities, often through promoting particular disabled persons as positive role models. Several DPOs and NGOs have aimed to address these barriers. The Disability Organisations Joint Front (DOJF), founded in 2001, is an umbrella organization of 18 affiliated disability organizations who work in concert. Although primarily an advocacy organization, the DOJF is increasingly involved in capacity-building programs for disabled people in the areas of legal education, public speaking, budget management, and committee skills through the creation a network of leadership training. In addition, the INGO Handicap International has established four Resource and Information Centers (RICs) operating in the tsunami affected towns of Hambantota, Batticaloa, Ampara, and Trincomalle, staffed by disabled people who have responsibility to develop disability action, education, and livelihood plans (Handicap International, 2007, p. 4). Leonard Cheshire, a UK-based charity has established a locally operated service in the Southern Province city of Galle, which experienced the full

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force of the December 2004 tsunami. At that center, staff provided local disability rights and leadership training to many of the men with disabilities in and support self-employment initiatives, such as auto rickshaws and mobile food vendorships. However, unless those role models share the characteristics of the population, their capacity to fully act as mentors is diminished. The Vanavil Self Help and Advocacy Group is an attempt to bridge that gap. When formed in July 2006, in Puliyankulam village of Trincomalee, Eastern Province, Vanavil had 11 disabled persons as its members. Today, the membership has increased to 26. Members meet monthly to discuss issues and encourage self-advocacy. However, disability activist and lawyer Thanuja Navaratne (2007) has been highly critical of the disability rights movement and DPOs in Sri Lanka, arguing that the leadership hierarchy is dominated by urban men with acquired disability who lack an awareness of the problems faced by children and women with disabilities: The DOJF . . . is also plagued with problems. The Joint Front lacks unity, is dominated by select leaders and representation of women with disabilities is minimal. . . . These movements do not focus on rights of a person with disability to family, community life, relationships, sex, marriage and parenthood. In some instances, disabled activists themselves are convinced that they cannot access these rights. (p. 3)

The story of the Sir James and Lady Peiris Cheshire Home at Mount Lavinia (near Colombo) is an example of a different cultural approach to capacity building less common in the West. In working around capacity building for residents an assumption by an outside expert might be to deinstitutionalize the residents into the community and eventually sell off the property. However, for many of these long-term residents this residence is their home environment, functioning as an extended family, not unlike many of the large extended families and village communities who pool together resources. Residents were assisted to gain self-help and interdependence skills and over time were able to gain training in self-care and then provide care and assistance to other residents. Although operating on donated funds, the group now manages the home for themselves and have transformed a traditional facility into a home environment that provides security of domicile and communal networks in an empowering way (Sir James and Lady Pieris Cheshire Home, 2000). Promoting CBR may assist with tackling some of the disability issues related to poverty (ADB, 2005). On the bleak side, CBR cannot be effective until there are proper funds available for training and infrastructure to carry out the various tasks (ADB, 2005). The Sri Lankan media focus has been on the campaign “Access for All” rather than on confronting representations of disability (see Navaratne, 2007).

Legal Mobilization Collective advocacy training is required for individuals and their families (Hess, Clapper & Gibison, 2001; Stringfellow, 2000). Although knowledge of the law and legal structures for minorities such as disabled people are


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important, legal competency and consciousness involves more than merely knowing about rights, it is as Philippe Nonet (1969,) puts it, “an active and searching awareness of the opportunities offered by law for enhancing one’s position in society” (p. 8). Training for legal mobilization is based on systems advocacy as “participants will be more self-determined in the role of participatory citizens, with the capacity for democratic contribution to this community” (Stringfellow & Muscari, 2003). The work of Fawcett, Seekins, Wang, Muiu, and Balcazar (1984) has identified key components of leadership training: • • • • •

Knowledge of problems, Skills in forming and leading groups, Strategic planning, Controlling consequences for critical actors in the system, and Governance systems.

By engaging with the six domains of leadership—learning, mentoring, dialogue, thriving, working, and leading—programs can support and promote emerging leaders in the disability community who are equipped to work for positive legal change in their communities (Zemans, 1982) In July 2007, using this framework, Harvard University law intern Laura Binger (with my off-shore assistance) conducted a training workshop on the new UN disability rights convention and Sri Lankan disability law on behalf of the Law and Society Trust, which at least introduced legal activists to disability issues from a rights-based perspective. Developments in disability law and social policy initiated since 1996 cannot be effective in terms of emancipatory social change until education for justice occurs with teachers, practitioners, people with disabilities, and human services personnel. Limited training and development activities have been undertaken regarding recent developments in the reconceptualization of disablement and the public law interest implications with legal mobilization and reform agencies. To remedy this deficit, people need to access universities at both the undergraduate and postgraduate levels. In Sri Lanka during 2009, the University of Kelaniya will, as part of its new Diploma of Disability Studies, conduct a 13-week course on Disability: Law and Policy.10 This course will be taught by a number of people with disabilities and social activists.

THE ROAD AHEAD: CHALLENGES TO CAPACITY BUILDING Four elements have been identified as sources of significant, though not necessarily insurmountable challenges to the capacity building of disabled people and DPOs in Sri Lanka: • Knowledge of rights/information, • Enforcement of rights,

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• Excessive bureaucratization and tokenism, and • Poor research cultures around critical disability studies and specialist skilling.

Knowledge of Rights/Information We know that Sri Lankans with disability have limited knowledge about the existence of services provided by the Department of Social Welfare (Ministry of Welfare, 2003, p. 23). The ADB (2005) has noted that knowledge about legal remedies for the violation of rights and the accountability of persons responsible for service provisions was severely lacking. Additionally, Faunce (2005) noted that people with disabilities should be involved in the development of human rights modules related to their protection in clinical trials (p. 180). For legal and social policy mobilization to occur, all stakeholder sectors need to be fully cognizant of the multilayered dynamics of disability consciousness. At present the situation is bleak in Sri Lanka. Leonard Cheshire surveyed 4,000 disabled people in the area of Trincomalee and found that only 2 people were aware of the existence of disability laws, and even then the details were imprecise (A. Zakky, Leonard Cheshire RC Advocacy Manager, Colombo, personal communication, 2007). Recent disability legal and social policy reforms need to be reflected in training and pedagogical strategies. Without a critical appraisal of liberal rights and Eurocentric frameworks, there is a danger of externally imposed regulatory standards, leading to a reliance on the expertise of external (foreign) advisers who may have different interests in Sri Lanka, at the same time diminishing the wisdom of Sri Lankan perspectives. It is imperative that critical disability studies education be embedded within the Sri Lankan environment. There are no freedom of information laws in Sri Lanka. Indeed, the Law Reform Commission of Sri Lanka Report on Freedom of Information of 1996 stated that “the current administrative policy appears to be that all information in the possession of the government is secret unless there is good reason to allow public access” (Law Reform Commission [LRC], 1996). Lack of access to information, including official documents on governmental policies such as social security initiatives, access regulations, medical records, legal aid, and education, affects the enjoyment of political, economic and social rights. In Fernando v. The Sri Lanka Broadcasting Corporation and Others (1 Sri L.R. 157 [1996]), the court stated “that information is the staple food of thought, and that the right to information, simpliciter, is a corollary of the freedom of thought guaranteed by Article 10 [of the Constitution]” (179). This authority could be used to initiate a petition for fundamental rights violation under Article 10 of the constitution arguing that various authorities were remiss in providing information in an expeditious, transparent, accessible manner to disabled people. Assuming that disabled people and their allies can achieve access to information and are aware of the mechanisms available or procedures to follow to obtain legal redress, the possibility exists to test the purview and enforceability of disability-related statute laws and constitutional protections, especially the fundamental rights provisions. There is overwhelming cynicism about the


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utilization of law as a vehicle for social change. There have been significant hurdles to overcome to open up this avenue of legal mobilization. However, in Environmental Foundation Limited v. Ratnasari Wickramanayake (C.A. App. No. 137/96, 1996), known as the zoo case, Justice Ranarsja expanded the principle of locus standi (a principle about who can bring a petition to the courts, the right to be heard). He made a distinction between two types of petitioners. The first petitioner is one who can show a “genuine interest” in the matter. The other category of petitioner is one who acts out of a social ethic “a public spirited person” to ensure that laws are applied to all. This distinction then paves the way for NGOs to lodge applications before the courts in matters related to the implementation of disability laws, such as was undertaken by the Public Interest Law Foundation in 2000 (Public Interest Law Foundation v. The Municipal Council of Colombo, CA 602/2000; Public Interest Law Foundation v. The Ministry of Justice CA 603/2000).

Enforcement of Rights Having legal rights does not mean that they will be enforced. Epp (1996), in his study on the effect of the Canadian Charter of Rights, concluded that although legislative reforms may create legal interests, they do not create the institutional resources necessary to activate those rights. Indeed, the Act for the Protection of the Rights of Persons with Disabilities, the main disability legislation, lacks specific mechanisms for the implementation and the enforcement of the rights. Further, the enforcement of legal remedies and the establishment of service standards have not been promoted by the Sri Lankan government. The judiciary, while constituted independently of Parliament, does not have the power of judicial review typical of common law systems. Epp (1996) identified three types of resources that can shape access to the judiciary: (a) organized group support from advocacy organizations, (b) adequate funding, and (c) support of the legal profession. Sadly, however, due to their need to focus on ongoing military conflicts, human rights and law reform communities have paid little attention to education of the legal profession, NGOs, or disabled people around disability concerns. In Sri Lanka, legislation passed by Parliament is unable to be challenged as being unconstitutional in a court. Indeed under Article 120, the Supreme Court has sole and exclusive jurisdiction to determine whether any Bill is inconsistent with the constitution. Petitioners are only able to challenge the constitutionality of a proposed law at the Bill stage and only then within one week of the Bill being placed on the Order Paper of Parliament (see s. 121). There is, in reality, an additional week as the Bill must also be published in the Gazette a week before being placed in the order paper. Aside from any possible delays in making the gazetted Bill available, people without access to legal information (often from marginal populations) are deprived of the opportunity to study the Bill, consult others, and file papers in court. It is critical then that any community education and legal mobilization strategies occur at this preliminary stage of any legislation and should include speculation as to the effects of the proposed law.

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Excessive Bureaucratization and Tokenism Several studies about barriers to participation indicate that it is extensive policy rhetoric deployed by government and the civil service that is part of the problem. For some government bodies and NGOs, consumer participation has been trivialized as a bureaucratic requirement driven by the needs of political correctness (Gordon, 2005). Despite the significant underrepresentation of disabled people in leadership positions in public life, there is a shortage of research about the career pathways and support structures of individuals with disabilities in leadership positions, especially those individuals with a public profile beyond a lightweight focus on a human interest story (Zollers & Yu, 1998). The people with disabilities who seem to have made it in the system are males who have availed themselves of education and employment before becoming disabled (Navaratne, 2007). The Sri Lankan political and legal landscape can be characterized as suffering from excessive bureaucratization, as evidenced by the recently appointed “jumbo” cabinet of 52 ministers, 33 noncabinet ministers, and 19 deputy ministers in the government of President Mahinda Rajapakse (Morning Leader, 2007). In the disability field, there is a distance between disabled people at the local level and the bureaucracy of government. Capacity building usually starts and stops at the levels of extensive parliamentary committees, departmental secretaries, and junior secretaries of the government ministers. Governments often have adopted the rhetoric of participation through media events and special days such as the Year of Accessibility 2007. This kind of marketing contrasts with poor publicity of the government directive for the National Council for Person with Disabilities to pay a monthly allowance of Rs. 3,000 (USD$28) to low income households with a disability which could alleviate the stress associated with poverty (Ministry of Social Welfare. 2007). As with the pattern in many Western nations, many of Sri Lanka’s civil rights activists, including the small number of educated disabled people, have been incorporated in official councils and advisory roles. As Pinto-Jayawardena (2006) remarks “by itself, such advisory functions may not have been problematic if this had not been accompanied by a withdrawing from their previously strong interventionist roles” (p. 8). In the disability sector, the consequences of such absorption are profound. Disabled people with postsecondary education are thin on the ground, as are disabled people with macro-knowledges of sociological and legal issues. Not only does the government end up talking to itself (believing that it is consulting), many draft policy documents and legislative reform bills remain concealed from public access, belying transparency.

Poor Research Cultures around Critical Disability Studies and Specialist Skilling In the Sri Lankan environment, challenges exist at the institutional level beyond the specificity of teaching and researching disability and development issues. Writing in another context, Goonatilake (2001) observed that unlike India, Sri Lankan social science scholars experienced a restricted flow of


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information, resources, and exposure to international debates. The degradation of the teaching and research enterprise is heightened by the peripheral role that Sri Lankan universities and “native scholars” command from the broader academic community, NGOs, and overseas funding bodies (Zubair, 1994, p. 21). Zubair’s (1994) work documented not only the poor resourcing of universities but also the short supply of tenured researchers. A profound shortage of academically qualified staff to teach in relevant areas remains an ongoing problem. The ADB (2005) found that most disability groups had a limited knowledge of impairments outside their own concern and significantly lacked knowledge and insights into labor and sexual exploitation, the abuse of women and children, and the need for psychological supports. However, instead of putting money primarily into supporting NGOs, these large investors need to be encouraged to develop partnerships with Sri Lankan universities through cooperative curriculum development, internships, publications assistance, scholarly exchanges, and research funding.

CONCLUSION This chapter has provided an introduction to the scope of disability in Sri Lanka and some of the history and traditions of the country that may impact on the understandings of disablement and the potential for capacity building. I described a nation that is trying hold onto its traditions (in the face of pressure from the external invasion of knowledge, finance, expertise) and grapple with the destructive effects (i.e., death, stress, disability, poverty) of a long drawn-out war. Despite these significant challenges, Sri Lankans with disability have managed to organize themselves and create a grassroots movement that many so-called developed nations might envy. Due to the limited role of any government social protection scheme, capacity building has worked on enhancing individual autonomy embedded as a community relation. CBR as a mechanism for spreading skills and information has proved durable and adaptable and is now being considered as a vehicle of social assistance beyond the purview of disability. It is too early to predict the quality and effectiveness of legal mobilization strategies in Sri Lanka. There is much work to be undertaken—by the disability community and also by the government who are faced with the unenviable tasks of auditing all their existing laws and programs so that they conform to the UN Disability Rights Convention. Globalization can present positive opportunities for Sri Lankans with disability. Already within the broader South Asian–Pacific regions, disabled people are meeting up, sharing information, and learning from each others’ experiences. Allies from universities and NGOs in the West have a significant role to play provided that they are prepared to negotiate the complexities of crosscultural information exchange and be open to the ways in which a Sri Lankan conception of disability can bring new perspectives on human difference.

NOTES 1. The first drug to treat leprosy in was developed in 1941. In 1995, leprosy was officially eliminated from Sri Lanka in reaching its target of 1:10,000. Finally, in 2001,

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the leprosy service began to be fully integrated into the Sri Lankan general health structure and by 2003 this task was completed. The Leprosy Hospital was deemed a special unit of the system. Hendala Hospital (and its leprosy unit) continues to exist today with 41 residents who have been given assurances that they may remain in this setting until they choose to leave or die. 2. Diriya Conference, Mainstream Disability into Development, Colombo, March 7, 2007. 3. Fernandopulle (2002, p. 35) noted that Sri Lanka has only 28 psychiatrists and 1 child psychiatrist. 4. Currently there is a bill (known as the Disability Rights Bill) before the Sri Lankan Parliament that seeks to introduce enforcement mechanisms around disability discrimination. 5. Sri Lanka Confederation of Organizations of Handicapped People, Sri Lanka Federation of Special Needs Persons. 6. Central Organization of the Deaf, Sri Lanka Council for the Blind, United Disabled Action Front, Motivation SL. 7. Christian Blind Mission (Brussels), Swedish Organisation of the Handicap International Aid Foundation (SHIA), Save the Children Sri Lanka Programme, JustGiving.Com, World Vision. 8. Asian Development Bank, World Bank, IMF, and USid. 9. Disabled Peoples International South Asian Regional Office has endorse CBR as a training mechanism for disabled people. 10. Disability Studies Unit, Faculty of Medicine, Ragama, DDST02075, Disability: Law and Policy. The curriculum was developed by the author as part of her academic study program.

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Fawcett, S., Seekins, B., Whang, T., Muiu, P., & Balcazar, Y (1984). Creating and using social technologies for community empowerment. In J. Rappaport & R. Hess (Eds.), Studies in empowerment: Steps to understanding and action (pp. 145–173). New York: Haworth. Fernandopulle, S. (2002). Mental health in Sri Lanka: Challenges for primacy health care. Australian Journal of Primary Health, 8(2), 31–38. Gombrich, R., & Obeyesekere, G. (1988). Buddhism transformed: Religious change in Sri Lanka. Princeton, NJ: Princeton University Press. Gomez, M. (1998). Emerging trends in public law. Colombo: Vijitha Yapa. Goonatilake, S. (2001). Anthropologising Sri Lanka: A Eurocentric misadventure. Bloomington: Indiana University Press. Goonatilake, S. (2007). Recolonisation: Foreign funded NGO’s in Sri Lanka. New Delhi: Sage. Gordon, S. (2005). The role of the consumer in the leadership and management of mental health services. Australasian Psychiatry, 13(4), 362–365. Guha, R. (1989). The prose of counter-insurgency. In R. Guha & G. Spivak (Eds.), Selected subaltern studies (pp. 45–84). New York: Oxford University Press. Handicap International. (2007). Program in tsunami affected country: Sri Lanka, Action Plan 2006–2009. Hess, R., Clapper, E., & Gibison, H. (2001). Empowerment effects of teaching leadership skills to adults with a serious mental illness and their families. Psychiatric Rehabilitation Journal, 24, 257–265. Hyndman, J., & de Alwis, M. (2000). Capacity building, accountability and humanitarianism in Sri Lanka. Forced Migration Review, 8, 16–19. ILO, UNESCO, & WHO. (1994). Community-based rehabilitation for and with people with disabilities. Joint Position chapter. Geneva: Authors. Japan International Cooperation Agency. (2002). Country profile on disability Democratic Socialist Republic of Sri Lanka. Planning and Evaluation Department, March. Kasturiaratchi, N. D., de Silva, H. J., Ellawala, N. S., Senaratne, D. C., Premawardene, A. P., & Seneviratne, S. L. (1997). A study of suicide in Sri Lanka. Colombo: Sumithrayo. Kasturiaratchi, S., & Jayawardena, P. (2004). Psychological status and physical disabilities of permanently disabled Sri Lankan servicemen. Hong Kong Journal of Psychiatry, 194, 9–14. Law Reform Commission (LRC). 1996. Report on freedom of information, 20 November. Colombo: Government Printers. Lord, J. (2004). Mirror, mirror on the wall: Voice accountability and NGO’s in human rights standard setting. Seton Hall Journal of Diplomacy and International Relations, 5(2), 93–110. Mendis, P. (2004). Training and employment of people with disabilities: Sri Lanka 2003. AbilityAsia Country Study Series. Bangkok: International Labour Organization. Ministry of Social Welfare. (2003). National policy on disability For Sri Lanka. Sethsiripaya, Battaramulla, Sri Lanka, Approved August 2003. Department of Government Printing. Ministry of Social Welfare. (2007). Ministry of Social Services & Social Welfare—Progress Report on Mahinda Chintana. Retrieved from http://www.socialwelfare .gov.lk/news_events.php. Morning Leader. (2007). Sirisena ‘ashamed to be a minister’ in jumbo cabinet. Morning Leader, 2(31). Retrieved on January 31, from http://www.themorningleader .lk/20070131/News.html. National Council of Economic Development (NCED). (2005). Millennium development goals country report 2005 Sri Lanka, Colombo: UNDP/NCED.

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Navaratne, T. (2007). Role of local disability movements in mainstreaming disability in development. Empowered Newsletter, LCI South Asia, 3(2), 2–4. Nonet, P. (1969). Administrative justice: Advocacy and change in a government agency. New York: Sage. Oosters, B. (2005). Looking with a disability lens at the disaster caused by the Tsunami in South-East Asia. Brussels: CBM, Christoffel Blinden Mission-Christian Blind Mission. Orjuela, C. (2003). Building peace in Sri Lanka: A role for civil society? Journal of Peace Research, 4092, 195–212. Perera, N. (2002). Indigenising the colonial city: Late 19th century Colombo and its landscape. Urban Studies, 39(9), 1703–1721. Perry, D. (2003). Moving forward: Towards decent work for people with disabilities— examples of good practices in vocational training and employment from Asia and the Pacific. Bangkok: International Labor Office. Pinto-Jayawardena, K. (2006). Co-opting the “watchdogs”; sombre thoughts on the angst of Sri Lanka’s “civil society” and the media. South Asia Legal Reforms and Human Rights, 3(2), 5–10. Powers, L., Ward, N., Ferris, L., Nelis, T., Ward, M., et al. (2002). Leadership by people with disabilities in self-determination systems change. Journey of Disability Policy Studies, 13(2), 125–133. Puri, E. (2004). Understanding participation: Theoretical foundations and practical implications. Economic and Political Weekly, 39(24), 2511–2516. Sir James and Lady Peires Cheshire Home. (2000). An independent living centre creating equal opportunities for full participation of persons with disabilities. Mt Lavinia: International Document. Somasundram, D. J. (1996). Post-traumatic responses to aerial bombing. Social Science & Medicine, 42(11), 1465–1471. Stringfellow, J. (2000). The relationship of participation in a collective advocacy programme to the attitudes towards authority of consumers of mental health services. Dissertation Abstracts International, 61(03), 1700. Stringfellow, J., & Muscari, K. (2003). A program of support for consumer participation in systems change. Journal of Disability Policy Studies, 14(3), 142–147. Thalagala, N. I. (2000). Attempted suicides in Sri Lanka: Antecedents and Consequences. MD thesis, Institute of Medicine, University of Colombo. Uragoda, C. G. (1987). A history of medicine in Sri Lanka—from the earliest times to 1948. Colombo: Sri Lanka Medical Association. Wickramasinghe, N. (2006). Sri Lanka in the modern age: A history of contested identities. Colombo: Vijitha Yapa. World Health Organization (WHO). (2003). International consultation to review community-based rehabilitation. Helsinki: Author. Wijewardene, K., & Spohr, M. (2000). An attempt to measure burden of disease using disability adjusted years for Sri Lanka. Ceylon Medical Journal, 45(3), 110–115. Zemans, F. (1982). Framework for analysis of legal mobilization: A decision-making model. American Bar Foundation Research Journal, 4, 989–1071. Zollers, N., & Yu, Y. (1998). Leadership in an able-bodied social context: One principal’s impact on an inclusive urban school. Disability and Society, 13(5), 743–761. Zubair, L. (1994). Scholarship on Sri Lanka in the West: Three Controversial Cases. Serendipity Electronic Journal, 5, 206–219.

CHAPTER 9

Disability Management: A Global Response to Disability in the Workplace Nicholas Buys and Christine Randall

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ver the past five years, the management of costs arising from disability and injury has become a global issue as countries realize that the loss of human capital arising from injury and illness is unsustainable. Put simply, companies will not invest capital in countries where the cost of doing business is too high. It is estimated that globally there are 650 million people with disabilities. Every year there are an estimated 270 million work accidents with an annual cost of US$1.25 trillion, representing 4 percent of global GDP (Zimmerman, 2006). In addition to the economic impact, countries now recognize the social consequences of unemployment arising from injury and disability. Unemployed workers experience higher rates of mortality and illness, family disharmony and breakdown, social exclusion, alienation, and marginalization (Harris & Morrow, 2001). There is also a strong relationship between work and mental health (Adam & Flatau, 2005; Butterworth, 2003; Murphy & Athanasou, 1999), with unemployed workers suffering higher rates of anxiety and depression (Harris & Morrow, 2001). One response to these economic and human costs has been the increasing use of disability management. Preventing unemployment by assisting injured and ill workers to return to work through disability management programs has led to significant benefits for the health and well-being of the workforce. This chapter provides an overview of the philosophy and principles underpinning disability management, emphasizing the systemic and ecological focus of the approach. It also describes the components of a comprehensive disability management system, including prevention, integrated claims management, early intervention, and return to work case management.

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DISABILITY MANAGEMENT: KEY CONCEPTS One of the issues facing disability management has been the degree of conceptual confusion surrounding the term, with an unpublished review of the literature revealing nearly 30 definitions of disability management (Clements, 2001, Disability management literature review re harmonised research protocol, unpublished manuscript). Early in its evolution, the phrase disability management was associated with vocational rehabilitation and individualized return to work case management (Harder & Scott, 2005; Rosenthal, Hursh, Lui, Isom, & Sasson, 2007), and to some extent this focus has persisted. However, disability management is a much broader response to injury and disability, encompassing both the prevention and management of these conditions in the workplace. Accordingly, the most comprehensive definition of disability management is that offered by Akabas, Gates, and Galvin (1992): A workplace prevention and remediation strategy that seeks to prevent disability from occurring or, lacking that, to intervene early following the onset of disability, using coordinated, cost-conscious, quality rehabilitation service that reflects an organizational commitment to continued employment of those experiencing functional work limitations. The remediation goal of disability management is successful job maintenance, or optimum timing for return to work, for persons with a disability. (p. 2)

This definition serves as a basis for this chapter, as it supports the notion of a continuum of services from prevention, through to return to work.

Inclusion and Empowerment of Workers Although employers introduced disability management programs primarily as a response to the rising costs of injury, their implementation in practice has resonated with the principles that underpin contemporary disability service delivery. The organizational values that often guide disability management principles include notions such as inclusion and empowerment. These principles are encapsulated in policies and mission statements that recognize workers as the company’s most important asset and workforce diversity as a key human resource management strategy. From a business standpoint, inclusion involves valuing and encouraging workforce diversity and helping injured workers remain productive employees. Although this action can be framed in terms of corporate social responsibility, it also makes good economic sense. Enlightened companies with excellent disability management programs often value diversity as a means of achieving the organizational mission. In doing so, these companies have shifted from a traditional view that regards people with injuries as problems to be “fixed” to one in which diversity is valued and injury is regarded as a systemic issue requiring a positive organizational response (Millington & Buys, in press). Such a response includes early contact with the worker following injury, return-to-work services, and provision of workplace accommodations and supports. Steelcase Corporation in the United States, one of the largest manufacturers of office furniture in the world, exemplifies the disability management

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approach. It has a workforce diversity program that focuses on inclusion as an underlying principle of its human resource management strategy. This includes both a commitment to recruiting a diverse workforce as well as the provision of an integrated disability management program. This program assists workers with both work-related and non–work related injuries, recognizing that regardless of the cause of the injury, workers are valuable assets that require support and should be retained (Steelcase, 2008). The notion of empowerment is realized in a number of ways in disability management. On an individual level, empowerment is about active involvement of injured workers in their rehabilitation programs. Examples of how empowerment occurs in practice include (a) ensuring workers have input into the development of their return-to-work plans, including return-towork goals; (b) including workers in case conference meetings; (c) obtaining workers’ input about work accommodation and transitional work options; (d) facilitating workers’ understanding of their medical conditions and implications for return to work; (e) providing workers with access to disability management policies and injury-related information contained in case files; and (f) ensuring workers’ financial situations are not in jeopardy. At the company level, empowerment occurs through the involvement of employee representatives (e.g., unions) in the development and implementation of consensus-based disability management programs (National Institute of Disability Management and Research [NIDMAR], 2000; Shrey, Hursh, Gallina, Slinn, & White, 2006). It is now recognized that workers need to accept and own new models of rehabilitation practice within workplaces or they may fail (Lambropolou, 1995; Randall, Buys & Kendall, 2006), and any lack of involvement can lead to resistance to change (Kenny, 1995; Randall et al., 2006). Approaches that involve workers in generating solutions to disability issues have been suggested as an effective means to promote ownership of disability management programs, particularly in organizations where the workplace culture and climate has been adversarial (Randall et al., 2006; Schurman & Israel, 1995). Labor–management collaboration has been found to enhance the quality and success of disability management programs (Shrey at al., 2006). Unions often have detailed knowledge of workplace policies and practices in areas such as health and safety and rehabilitation, and can often assist in gaining the trust and cooperation of workers with disability management initiatives. Collaboration can occur at a number of levels in the organization. Labor–management disability management committees may be involved in developing specific objectives, policies, and procedures for the disability management program, supervise its implementation, resolve disputes, and evaluate its effectiveness (NIDMAR, 2000). The work of such committees has been shown to significantly reduce the numbers of absent injured workers (Shamhart & Growick, 1996), and can lead to improved outcomes in areas such as increased provision of restricted duties, fewer medical disputes, and removal of obstacles to rehabilitation programs (Bruyère & Shrey, 1991). Empowerment through collaboration can also be engendered in other ways, including (a) educating employees about the philosophy and objectives of the company’s disability management program; (b) clearly explaining

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workers roles and rights within the program; (c) promoting communication among all participants in the return to work process including injured workers, their co-workers, physicians, other health professionals, case managers, supervisors, union representatives, and claims managers; and (d) involving injured workers as soon as possible following injury in their return to work.

SYSTEMS APPROACH Too often in the past, disability management has been narrowly interpreted as individualized return to work case management. However, evidence suggests that a systems approach to disability management, with a focus on the organizational context, not just the individual worker, is important to the implementation of successful programs (Harder & Scott, 2005; Randall et al., 2006). A systems approach is characterized by a philosophical commitment to disability management that is primarily reflected in the workplace culture, management structure, management attitudes, business approach, communication channels, and performance evaluation (Akabas et al., 1992). Engagement and commitment at all levels of the organization are critical. For example, there is little point in a supervisor assisting an injured worker to return to work through an alternative duties program without senior management commitment to allocate the necessary resources (e.g., on-site case managers). Similarly, an employer-funded smoking cessation program will not be successful unless there has been sufficient consultation with workers about how the program will be best implemented. The systems approach entails a shift from a psycho-medical model of rehabilitation (Cottone & Emener, 1990) to an ecological approach that recognizes the environmental and organizational factors that influence return to work (Amick et al., 2000; Dobren, 1993; Shrey & Olsheski, 1992). Amick et al. (2000) found that the existence of a people-oriented culture, a safety climate, disability management policies, and ergonomic practices created an “organizational ecology” that was predictive of less work disability incidence, shorter absence durations, and reduced costs. On the other hand, barriers to the prevention of injury, successful return to work and retention of workers with disabilities include poor management commitment to the disability management process, unwillingness to provide transitional work, poorly designed worksites, and lack of cooperation from treating practitioners. These barriers are systemic issues that must be addressed if the disability management program is to work. Successful organizational approaches to disability management are based on the implementation of environmental strategies, such as injury data analysis, facilitating a team approach, training relevant parties, organizational change, ergonomic services, and program evaluation (Habeck, 1999). In a systems model of disability management employers manage their own programs (rather than using third parties, such as insurers or rehabilitation providers) and integrate a range of interventions to improve return-to-work outcomes (NIDMAR, 2000; Rosenthal & Olsheski, 1999; Shrey & Olsheski, 1992). These interventions, wherever possible, are workplace-based


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and managed by in-house disability managers. The workplace becomes the “therapeutic environment of choice” (Shrey, 2006, p. 28) for rehabilitation and prevention services, ensuring supervisors, union representatives, and coworkers can participate in these processes. Safe work practices, work hardening, transitional work, and job accommodations are all provided at the worksite (Westmorland, 2000), rather than in external facilities, such as work hardening centers. Integrated disability management involves linking diverse company functions to promote a systemic approach to return to work. This approach has resulted in significant improvements in return-to-work outcomes and cost savings (Fernberg, 1999; Storrer, 2000; Tortarolo & Polakoff, 1995). Ideally, disability management should be incorporated within the company’s strategic planning process (Curtis & Scott, 2004), as managing disability can involve a range of corporate functions, including human resource management, health and safety, claims administration, rehabilitation, accounting, health care, and wellness programs. Unless senior managers ensure that these functions work closely together and communicate well, they can hinder each other, resulting in longer work absences among injured employees. For example, if claims determination is slow and workers do not receive timely compensation benefits, an adversarial situation can develop in which workers lose motivation to cooperate in the return-to-work process. Similarly, if human resource management policies fail to support the accommodation of injured workers in compliance with federal laws, the return-to-work process can be delayed. Integrating these functions significantly benefits injured employees and companies. For example, in a case study of Pitney Bowes, a company providing mail and message management services, the integration of workers compensation, health, benefits, wellness, employee assistance, and safety programs reduced its disability claims by 15 percent and the number of days lost to absence by 42 percent (Lipold, 2000). Companies with integrated disability management programs generally do not distinguish between work-related and non–work-related injuries, recognizing that both result in absence and loss of productivity. In most industrialized countries, only those employees who are injured at work (i.e., entitled to workers compensation benefits) receive rehabilitation assistance. Employees who incur their disability or injury outside of the workplace usually have minimal contact or assistance from the workplace and only receive their entitled period of sick leave. Employers have realized that failing to support these workers does not make economic sense, particularly given that employee turnover costs between one and two times a worker’s salary (LifebyDesign, 2007). Thus, many companies now provide the same return-to-work programs for employees with work-related and non–work-related injuries (Fernberg, 1999). If employers have an integrated disability management program, workers are not only more likely to return to work but will do so earlier, saving employers thousands of dollars in lost productivity (Shrey, 1995). Providing healthy workplaces through disability management programs may also be associated with higher levels of productivity, well-being, and workplace harmony (Harder & Scott, 2005; Masengarb, 1994). For example, in another

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case study, Steelcase has saved millions of dollars by merging their workers compensation and disability areas, instituting the same one-day reporting system for all medically related leave, and integrating functions such as prevention and rehabilitation for nonoccupational as well as occupational injuries (Lipold, 2000).

COMPONENTS OF AN INTEGRATED DISABILITY MANAGEMENT PROGRAM Components of an effective integrated disability management system include the full continuum of services—prevention, integrated claims management, early intervention, and return to work case management (Harder & Scott, 2005). Each component is underpinned by important principles that determine the nature of the intervention. These principles include an organizational commitment to the program, a focus on data collection and analysis, implementation of defined roles and procedures, and ongoing program evaluation.

Prevention Employers view prevention as one of the key processes in disability management (Shrey et al., 2006). Targeting prevention programs in the right areas can lead to significant costs savings, and health benefits to employees (Fruen, 1992). An important starting point in the design of any prevention component of a disability management program is the collection of data on the company’s injury profile by reviewing injury records (Mital, 1995). This analysis will provide the information required to design injury prevention strategies that focus on key problem areas (i.e. high cost or high incidence injuries) rather than peripheral issues that are of little concern to either the company or its employees. For example, a study of claims conducted by CIGNA Group Insurance found that chronic conditions, particularly musculoskeletal problems and heart disease, were the main cause of medical and disability costs for the company. In response, CIGNA implemented a system to predict employees most at risk of submitting a claim and then providing those individuals with health and wellness programs designed to assist them to prevent and manage their conditions (Business Wire, 2007). Sources of data collection vary from company to company. However, some common types of data that may assist with prevention of efforts include (a) cost of benefits per employee, (b) average cost per claim, (c) cost of benefits as a total percentage of payroll, (d) average claim duration, and (e) claim incidence (i.e., number of claims per 100 employees) (Harder & Scott, 2005). These data can be collected by injury type and location within the company to establish a profile of the costs of injuries and the nature and location of their occurrence. Prevention activities can then be prioritized according to the most pressing problems and targeted to the areas of concern. For example, Mital (1995) suggested that such data can be a starting point for ranking jobs in terms of physical demands and injury potential, thereby


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providing a basis for organizational remediation activities in the area of job modifications. Depending on the needs of the company and its employees, there are a range of prevention activities that can be implemented through a comprehensive disability management program. These include: • Workplace modification. Hazards and safety risks in the workplace can be identified and eliminated to avoid injuries. Critical to this process is an analysis of the causes of workplace accidents and illnesses so preventive action can be taken to avoid further injuries. • Job redesign. Through ergonomic assessment and job analysis, elements of a job that may increase the risk of injury can be eliminated or minimized. This redesign can include modification of the physical and mental demands of the job (e.g., reduction in heavy lifting, elimination of workplace stressors); redesign of equipment, tools, and production processes; and modifications to work stations (e.g., adjustment of the height of a work surface). • Safety training. Many employers incorporate regular safety training sessions into orientation and staff development programs, examples of which could include training on safe lifting techniques, health and safety regulations, stress management, and hazard identification. • Health and wellness programs. Health promotion is associated with the prevention of chronic illness and disability (Tate, Habeck & Schwartz, 1986). For example, programs focussed on weight reduction, fitness, antismoking, and chronic disease self-management can reduce the incidence and impact of illness and disability among employees. Furthermore, with the increased focus on hiring and retaining older workers because of labor shortages, such programs are seen as a key component of an overall disability management strategy for this population (Anderberg, 2006). • Employee assistance programs. Early referral of employees experiencing conditions such as depression and alcoholism to employee assistance programs can help them manage these conditions and thereby reduce absenteeism. • Workplace culture. Over recent years employers have recognized the links between workplace culture and employees’ health and productivity. For example, there is considerable research that reveals a strong link between organizational culture and the incidence of stress (Randall et al., 2006). A corporate culture characterized by high employee morale, positive work relationships, employee involvement, and open communication can lead to a reduced incidence of disability (Harder & Scott, 2005; Shrey et al., 2006).

Integrated Claims Management Claims management involves the processing and administration of a claim for compensation as a result of an injury. The life of a claim moves through stages including claim initiation, decisions about entitlements, and claim finalization. Harder and Scott (2005) distinguished claims management from case management, defining the latter as “the coordination of services to assist an individual back to function and ultimately . . . back into the workforce” (p. 1004).

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Although claims management is not a major focus of this chapter, it is an area that requires attention in any disability management program. Too often claims managers report to different areas of the organization from safety and rehabilitation managers. This separation can result in significant problems for disability managers because the approach of claims management can contribute to negative attitudes toward the company among employees and resistance to rehabilitation efforts. For example, when claims are not determined in a timely fashion and employees are left without an income, they can become frustrated and anxious. Employees may then seek legal advice, which can result in a costly litigation process (Cantlon, 1995). By integrating the claims management function with other components of the disability management program, these outcomes are avoided. Such integration has resulted in enhanced outcomes for organizations and their employees (Tortarolo & Polakoff, 1995). For example, Southern California Edison, one of the largest power companies in the United States, achieved a significant reduction in disability expenditure simply by integrating safety programs, claims processing, and vocational rehabilitation into one entity. This integration improved communication, linked research to injury prevention and management efforts, led to a single company philosophy about disability management, and reduced adversarial incidents between employees and the company (Juliff & Polakoff, 1994).

Early Intervention Early intervention is critical to an effective systemic approach to disability management. Progressive organizations constantly assess the risk of disability in the workplace and implement interventions to eliminate or minimise this risk (Habeck & Hunt, 1999). When injuries do occur, they introduce rehabilitation services as soon as possible. The longer injured employees are absent from the workplace the more difficult it is for them to return to work. For example, Strautins and Hall (1989) found that the earlier a referral was made to the disability management program, the higher the likelihood of a successful return to work and the shorter the time taken to return to work. Of those workers who were referred to disability management within a week of injury, 90 percent returned to work, and 73 percent had done so within 28 days. However, of those workers referred one month after injury, only 66 percent returned to work, and only 42 percent did so within 28 days. In another study, Rundle (1983) found that three months postinjury, returnto-work rates dropped significantly to 33 percent and after 12 months, rates further declined to 18 percent. Although these findings could be complicated by the severity of the injury, there are a number of factors that may contribute to the relationship between length of work absence and return to work. The psychological impact of work absence through injury is viewed as similar to that facing people who are unemployed (Harder & Scott, 2005). Psychological distress arising from decreased income, loss of social contact, altered work identity, and changes to daily routine can have a marked impact on the individual, leading to anxiety, helplessness, and depression (Harder & Scott, 2005). For many workers,


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injury leads to the development of a passive sick role (Galvin, 1985). Individuals compensate for their perceived lack of contribution to society and the family by adopting the view that they are too sick to work. In effect the work identity is replaced by a role characterized by illness and dependency, in which treating practitioners take significant control over an individual’s life. Over time the sick identity can become extremely debilitating, leading to social withdrawal, family dysfunction, and depression. Workers absent from work for long periods may also lose self-confidence and develop a fear of failure about returning to work (Tugman & Palmer, 2006). The mental health of injured workers has been found to be particularly poor where they have been absent from the workplace for 12 months or more (Dembe, 2001). Although the direction of this relationship remains unclear, it is apparent that work provides an important component of our identity (Szymanski et al., 2003). To adapt, injured workers may take on other roles. For example, they may become the family organizer, picking up and taking children to school, preparing meals, and performing household chores. Once this identity shift has occurred, injured workers no longer have the same motivation to work. This becomes a significant return-to-work barrier and can result in the perception among employers and co-workers that the absent worker is malingering. Companies that provide disability management programs recognize the need for and are well positioned to implement broader organizational measures that promote early return to work. Such measures include (a) company policies and practices that support early intervention, (b) contact with workers and their families immediately following an injury to provide support and reassurance about the workers’ jobs, (c) early resolution of claims and prompt payment of compensation or disability benefits, (d) regular communication with workers who are absent from the workplace (Masengarb, 1994) as even casual contact has been shown to decrease absences by 30 percent (Curtis & Scott, 2004); (e) early provision of information to treating practitioners about job demands and suitable transitional duties (Shrey, 1995), (f) appropriate medical treatment, and (g) implementation of rehabilitation plans that include clearly defined treatment and return-to-work goals. There are many examples of the impact of early intervention on rehabilitation outcomes and company costs. For example, General Electric achieved significant savings by implementing an integrated disability management program that emphasized early reporting of claims, early and consistent contact with injured employees, and advising doctors of the physical demands of jobs. The company also took more active control of the medical management of injured employees, while at the same time changing employee expectations that return to work was possible only after full recovery (Tortarolo & Polakoff, 1995).

Return to Work Case Management It is not the purpose of this chapter to provide a detailed overview of the return to work case management process. However, there are some important aspects of this process that are worthy of exploration, including disability

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management’s focus on the work environment, the need to address the social impact of injury, and the importance of return-to-work monitoring to ensure job retention. The majority of injured workers require little or no rehabilitation assistance to return to work (Harder & Scott, 2005). However, predicting which workers will or will not return to work is a complex issue, with failure to return to work being related to a range of individual, situational, and organizational factors (Martin, 1995). Disability managers often seek to develop screening tools that assess the risk factors within their organizations, which can be then used to indicate the need for rehabilitation intervention. Within a disability management framework, the role of the case manager is to develop and implement strategies and return to work plans for injured workers (Shrey, 1995). What distinguishes disability management approaches from traditional vocational rehabilitation is the emphasis given to the work environment (Shrey & Olsheski, 1992). Consistent with the notion outlined earlier that work disability is a systemic issue that requires an organizational response, the focus of case management is often as much on addressing environmental barriers to return to work, as it is on addressing individual factors. These environmental barriers can range from broad factors such as lack of management commitment to rehabilitation and negative organizational cultures or climates through to practical and specific factors such as poorly designed worksites and inadequate job accommodations. This comprehensive approach to case management pervades the entire return-to-work process. During the assessment phase, for example, the case manager collects information on “physical, psychological, social and environmental dimensions of the workplace” (Shrey & Olsheski, 1994, p. 307), as well as the residual functional capacities of workers and the impact of their injuries on psychological and physical function. The important focus of assessment is not whether workers can return to work but what accommodations are needed to ensure their early and safe return to work. In an environmental approach to case management, interventions are primarily focused on the workplace and the interaction between that workplace and the worker. Proponents of disability management acknowledge the therapeutic value of maintaining the occupational bond between employer and employee (Bruyère & Shrey, 1991; Shrey & Olsheski, 1994). It is therefore not surprising that Shrey (1995, 2006) described the workplace as the therapeutic environment of choice and recommended that every effort should be made to facilitate an early return to work. In this context, case management is about coordinating a range of services to facilitate a therapeutic environment. Strategies can include: • • • •

Provision of suitable transitional work, Job and workplace modifications, Education about body mechanics in relation to specific job tasks, Job analysis to provide treating practitioners with physical and psychological information about job tasks, • Case conferences involving the injured worker and key stakeholders to agree on a return-to-work plan,


• • • •

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Support services to workers and their families, Education of supervisors to support the return to work, Functional capacity evaluation to determine residual capacity, and Coordination of appropriate medical services focussed on return to work.

In recent years, disability management has given greater acknowledgment to the social impact of injury on the return-to-work process. In the past, workers’ compensation authorities have been reluctant to fund services aimed at addressing the social consequences of injury, yet these issues present major barriers to return to work unless they are addressed by disability managers. Dembe (2001), for example, describes return-to-work as a “socially predicated event” (p. 411), because of the influence of factors such as the personal characteristics of workers and their families, workers’ social and economic environments, and the availability of suitable work. Social support therefore has a critical role in mediating a successful return-to-work process (Dembe, 2001), and disability managers must gain the trust and cooperation of family members in supporting return-to-work plans (Shrey, 2006). Any assessment of workers following injury therefore needs to extend beyond the functional implications of the physical impairment to investigate the social consequences of the injury. Interventions that can address social issues include personal and family counselling, inclusion of the family in rehabilitation planning, assistance with domestic activities, provision of suitable work, and financial support. Progressive companies with disability management programs have recognized that drawing an arbitrary line between work and family life in terms of the impact of disability serves little purpose and can actually hinder the return-to-work process because social issues are not addressed. For example, Ontario Power Generation implemented a collaborative, multidisciplinary disability management approach that includes an employee family assistance program to acknowledge the fact that focusing on medical problems alone without addressing psychosocial issues does not work, particularly in situations where mental health issues are involved (Westcott, 2005). Similarly, Southern California Edison integrated a behavioral health service within its disability and absence management program after it was identified that work absence was as much a result of psychosocial issues as physical problems (Ceniceros, 2007). An important component of a successful case management process is the ongoing monitoring of workers on return-to-work programs, particularly as job retention rates of workers in some compensation systems has been shown to be poor (Beck, 1989). There are many reasons why return-to-work programs fail. Workplace issues are a major source of problems, hence the need for a workplace-based disability manager to establish mechanisms to identify the barriers to job retention and put strategies in place to address them. For example, injured workers returning to work after a long absence can be stigmatized as malingerers by management and co-workers (Young, 2004). The support of line managers through top management for rehabilitation programs is important. Disability managers must engage supervisors in return-to-work programs by clearly outlining their roles and responsibilities in supporting

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injured workers and providing them with an understanding of the impact of injury on workers. Involving supervisors and co-workers in selecting suitable job accommodations and transitional work is a useful way of gaining their commitment to return-to-work programs. Early identification that the worker is struggling with the return to work is also critical to work retention. Workers can lose confidence in their capacity to work or find the job demands excessive (Shrey, 2006). Ongoing psychosocial issues may also impair the readjustment of workers into the workplace. Disability managers need to recognize these problems when they occur and coordinate solutions by bringing together workers, their families, line managers, and treating practitioners in forums such as case conferences. In summary, case management in integrated disability management systems is a complex process involving a range of individual and situational variables that must be identified and assessed for their potential to help or hinder the return-towork process. Focusing only on the workers physical or mental capacity is clearly inadequate when there is a range of psychosocial and environmental issues that have equal or greater impact on return to work.

CONCLUSION Disability management has evolved as a solution to the economic and social costs of injury and disability in the workplace. Globally, companies are integrating disability management programs into their human resource management strategies and rewarding senior managers on their capacity to reduce the costs of illness and injury through the implementation of such programs. The philosophies underpinning disability management practice resonate with the social ideals of governments and labor movements in North America, Europe, and Australasia. Disability management represents a move away from the adversarial compensation systems of the past that pitted workers against management and toward a consensus-based system of managing injury prevention and rehabilitation. This approach makes sense, and there is evidence that it works for all parties. By taking into account the needs of both workers and employers, disability management offers a solution to the spiralling costs of injury and illness that is consistent with both modern business practice and the labor movement’s goal of improving the lives of workers.

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CHAPTER 10

When Systems Hurt Rather than Heal: Outcomes Following Psychological Injury at Work Elizabeth Kendall and Heidi Muenchberger

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n the Australian context, workers’ compensation jurisdictions have witnessed a substantial escalation in the number and cost of claims for psychological injury over the past decade. There is little doubt that the management of psychological injury in the workplace is an arduous process for all stakeholders and is subject to many complexities, particularly once a claim for workers’ compensation has been lodged by the worker. There are many variations in definition, diagnosis, management practices, processes, and claim/legal procedures, each of which has the potential to add unnecessary time and cost to the outcome and delay return to work. In addition, growing costs have been associated with the number of claimants electing to pursue common law action against their employers. Clearly, there is an urgent need to examine the factors that delay or hinder the prevention, identification, and appropriate management of psychological injury. This chapter describes the findings of a series of qualitative interviews with key stakeholders who are involved in managing claims for psychological injury. The chapter focuses on one major finding to emerge from these interviews, namely, the irony that workers’ compensation system tended to exacerbate negative psychological states and further injured individuals. Irony was a crucial theme in the experiences of people who had lodged workers’ compensation claims for psychological injury in the workplace. Irony emerged from every interview in some form. All parties criticized the system for bringing about poor outcomes for claimants. However, most people who delivered services within the system failed to see how their role contributed to the irony. Indeed, there was a sense of acceptance and powerlessness among participants.

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Most people indicated that the onus was on claimants to avoid the system rather than for the system to become less damaging.

PSYCHOLOGICAL INJURY IN THE WORKPLACE Traditionally, claims for psychological injury originated from traumatic and life-threatening events as would be experienced in emergency services or policing. However, the recent surge in claims for psychological injury in the workplace has been linked to the experience of accumulated or chronic stress. The implications of this escalating phenomenon for the worker’s compensation system, coupled with its impact on industry and workers, are substantial. Recent research relating to worker’s compensation claims in Australia revealed that 2.2 percent of overall lost-time claims were associated with psychological injury or work stress, but that these claims accounted for excessive claim-related costs (WA Workcover, 1999). The direct costs associated with a claim for psychological occupational injury are readily apparent and can be easily calculated. Direct costs consist of medical expenses, lost time at work, and the cost of return-to-work programs for injured workers. However, the indirect costs of psychological injury are far more difficult to quantify and include lost productivity, changes in future work activity, and earnings for the injured person (Weil, 2001). Indirect costs have been reported to be between four to eight times greater than direct costs (CCH Australia, 1990). Given the burgeoning incidence and costs associated with claims for psychological injury in Australia, it is therefore critical to better understand how this condition can be managed and how a return to work can be facilitated for these workers. Research to date has recognized a range of factors that contribute to psychological injury in the workplace, such as work overload and role ambiguity, but has failed to identify effective and appropriate solutions once injury has taken place. Indeed, over a decade ago, Nowland (1997) noted the “complete absence of literature dealing with tertiary rehabilitation of occupational stress” (p. 10). Little has changed since that time. The purpose of this chapter is to examine the systemic context experienced by psychologically injured workers and other key stakeholders within the system to determine its impact on outcomes. The interviews that are presented in this chapter formed part of a larger study. Many more findings emerged from these interviews, but the focus of this chapter is one theme that dominated all out issues, namely, the irony that a system that is intended to heal and rehabilitate becomes a source of further injury. The rest of this chapter describes the irony that featured in the workers’ compensation system.

THE INTERVIEWS Given the vastly different perspectives of the various parties involved in workers’ compensation claims and rehabilitation, we interviewed 10 major groups of participants in Australia. The stakeholders included people who had lodged a claim for psychological injury, employers, rehabilitation providers, insurers/ claims managers, general practitioners, psychiatrists, psychologists, solicitors,

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and worker-support organizations (i.e., unions, claimant support groups). In total, 88 interviews were conducted covering rural, remote, regional, and urban areas. Of the claimants the majority reported having experienced a psychological injury associated with chronic stress, although some had also experienced a concurrent or prior traumatic event. Only four claimants had experienced an identifiable traumatic event (i.e., assault, abuse, armed hold-up, threatening event), but all four also reported chronic stress in the workplace following this event. All people who were interviewed were first asked about their experience with claims for psychological injury and their background/history. They were then asked to describe the typical claim process from their own perspective, giving examples where possible and noting the problematic or successful areas.

A SYSTEM PLAGUED BY IRONY Although several themes emerged from the interviews, one core theme seemed to describe the experience of a psychological injury claim for most participants. This theme was the most important and consistent theme to emerge from the interviews and described the workers’ compensation system as being plagued by irony and paradox. Irony is defined as “the expression of meaning through the use of language which normally signifies the opposite” (Compact Oxford English Dictionary, 2005). Although irony emerged at countless points during the process of managing a claim for psychological injury, several features of the system were repeatedly cited as prominent sources of irony. Irony was most evident in that the intended outcomes of the system, namely, fair and equitable compensation for unjust injury and effective outcomes such as return to work and cost containment, were not achieved as a result of aspects of the system itself. Of greater irony, though, was the fact that the observed consequences of the system were diametrically opposed to its intended outcomes. A major feature of the irony was the fact that individuals who were already psychologically damaged by their workplace experiences experienced further damage as a result of their passage through the workers’ compensation system, a system that was established to protect the rights of workers (see Kendall, Muenchberger, & Clapton, 2007, for a review). Negative outcomes, such as long-term unemployment, deterioration in mental health, attempted suicide, and aggression were common among claimants, indeed, more common than successful return to work. As described by most rehabilitation providers, “it’s not exactly an equitable system—not in any one part of it, just all over—its very difficult to get stress cases [people with psychological injury] through the system intact and get them out the other side healthy because of the nature of the system.” Other stakeholders who were interviewed commented that “if you have stress, if you lodge a stress claim—then if you’re not stressed when you lodge it, you’re stressed by the time it’s finished!” In the opinion of some stakeholders, “it becomes a bit of a vicious circle—instead of seeing them [claimants] only for the original complaint, all the other stresses now come into it and much time is taken up dealing with those issues.”

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Most stakeholders discussed a significant financial irony in the system in that the cost of accepting the legitimacy of a claim for psychological injury and providing an appropriate intervention sooner rather than later was potentially less costly than maintaining the current system. For instance, as one claimant described: they used thousands and thousands and thousands of dollars just to keep me away from work—it just doesn’t make sense! They could have paid that money to fix me up and get me back—I could’ve been managing the company now. It seems so stupid that they could waste money instead of me being productive and actually making them money.

Several employers who maintained their own insurance for workers rather than relying on the workers’ compensation system corroborated this point, commenting on the irony of their current claims management style: “this type of claim makes me question the whole system—so far, we have spent six thousand dollars investigating the claim to defend it, all so we can maybe turn around and say to him [clamant] ‘your claim’s not accepted’ and then he’ll probably take it further [to a legal suit] so they’re very costly.” Despite being considered one of the few stakeholders who were likely to benefit from the system, both plaintiff and claimant solicitors commented on the irony of the system. They agreed that many people were driven into legal action by the system when it would be preferable to avoid such action. They pointed out that this irony resulted from the inconsistent legislation in the area that effectively hindered early intervention and prevention. They described how psychological stress was not defined as an occupational disease. Thus, although it was recognized as a hazard and could be investigated by the workplace health and safety authorities if necessary, positive change could not be enforced. Although some employers elected to report and respond to psychological injuries in their workplaces, the consistent promotion of early intervention and prevention within the system remained elusive. As one psychologist commented, “employers don’t have to do anything—they really don’t have to take responsibility.” Most stakeholders firmly believed that the legislation forced parties into a protracted and conflicted search for causality and blame. Given that the relevant legislation excludes claims that result from psychological duress caused by industrial issues, such as failure to be promoted, dismissal, retrenchment, demotion, discipline, transfer, or redeployment, causality has become an essential ingredient of the process. If it can be determined that stress has been associated with these issues, then compensation will be denied. The only reason compensation may be considered is if it can be shown that management actions were “unreasonable and harsh.” The workplace must be determined to be a “significant contributing factor” associated with the contraction, recurrence, aggravation, or acceleration of the injury, and this determination takes into account the existence of any hereditary factors and other matters affecting the worker’s health in general. Ironically, this legislation gives permission to the system to examine the claimant’s personal life in great detail, with little respect for privacy and dignity.


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The process invariably resulted in poor outcomes for claimants and a feeling of violation, contrary to the objectives of the system, which include early and productive return to work. Of further irony is the fact that in many cases, such feelings of violation contributed to either the original experience of stress in the workplace, the lodging of a claim, or instigation of legal proceedings. Thus, the system has perpetuated the circumstances that initiated the process in the first place. In the opinion of many stakeholders, the system clearly damaged claimants’ ability to return to work. “Once they [claimants] can’t do their job anymore, the system pulls out all support—even though they’re still injured.” Others noted that those with the greatest needs, presumably due to the development of intractable psychological illness, were often labeled as unemployable, “which means he can no longer do his previous job—but what happens to him at the other end? They’ll settle [pay a lump sum compensation], but there is no more help for him and no job.” Many rehabilitation providers reported giving pro bono services to these individuals just to assist them to find some alternative course of action. As one psychologist summarized, I see the workers’ compensation process is a very, very good thing if the person is off for a short period of time—it looks after workers and gives them the income and treatment they need in order to go back to work. So if it’s a shortterm thing its fantastic but where it becomes a more chronic problem, where the person cannot go back to their old job, that’s where it starts to become a problem.

Ironically, the system was least helpful and most damaging to those who needed assistance the most. Furthermore, the very nature of psychological injury rendered claimants less able to comprehend the complexity of the system and benefit from any information that was available to protect them against the stress that is inherent in any legal process. They were also more likely to be vulnerable to manipulation, either misguided or intentional, allowing them to be controlled by the system more effectively. A major irony within the system was the fact that the significance of the initial psychological injury declined in priority for claimants as they progressed along the compensation claim process. New anxieties and stressors often surpassed the initial issue and became more prominent in claimant’s experience as they spent considerable amounts of energy negotiating the system. As described by a psychiatrist, “The process actually adds to the burden of disability—that is a serious problem—the process itself is so stressful.” Another psychologist noted, “The worker’s compensation process itself becomes the driving force behind the ongoing anxiety and depression.” The original issue is “lying back in the dust,” as noted by one rehabilitation worker. A union representative also commented on this paradoxical outcome. “You get into it [the system] and you are powerless, totally powerless. This is one of the reasons people feel stressed in the first place—they are powerless and they have gone into a system that makes them feel even more powerless.” Indeed, claimants repeatedly spoke about the system as one that took away their control. They defined their presence within the system as becoming more involuntary as time progressed. Most claimants felt that they “needed

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to get out of this system—I need to have my life back—get some control over my life again,” but were unable to find exit points. Instead, they identified triggers that pushed them into the next phase of the process and into even deeper conflict. Even insurers commented on this irony, as one claims manager said, “somewhere along the line, at a very early stage, we forget about the human factor—it becomes more about arguing and we all forget it is likely to impact on the injured person.” This intensifying conflict was evident in the increasing use of battle analogies and war-like terminology, which was particularly ironic in a field that should be characterized by empathy, rehabilitation, and healing. As the process moved further toward statutory and common law proceedings, all participants began referring to concepts drawn from fields such as espionage or military strategy. For instance, as one rehabilitation provider commented, “You end up with a battle because you have one side saying this person has got things wrong with them and at the same time you are trying to get the person better.” According to the Macquarie Dictionary (2002), war is not only an act but a state or condition wherein nations are engaged in contention, and also where there is a matter of controversy or dispute subsisting between them. It is not surprising, therefore, that the current workers’ compensation system has all the trappings of a war. However, the psychological condition of claimants was clearly prolonged by the battleground mentality of the players. The severe ramifications of this mentality for the injured workers were articulated by most of the stakeholders. As described by one employer, the whole thing ended up like a battleground and at the end of the day the injured person is not a priority because the claim centres around money. As soon as the lawyers get involved and they start to say things like, “we’ve got to get the employer for what we can,” then it becomes a war. It is a battleground around medical diagnosis, capacities to work, and surveillance. Can you imagine if you were a psychologically injured person and you find out that someone is actually following you and taping you?

Similarly, a union representative described the process as “forever fighting the whole guard action while the person gets sicker and sicker and sicker so there is very limited possibility that they will ever return to work.” The whole approach was described as “being held to ransom—seeing how much dirt you can throw.” A psychologist noted how the focus of the system gradually moved away from the well-being of the claimant until claimants themselves had little choice but to “join the war.” It is very difficult because the insurers can play hardball—they sometimes make a partial offer. This is really sometimes an invitation for the claimant to play hard, or accept it and get out. It is kind of like dangling a carrot and I guess the insurer is relying on the naiveté of the client. A couple of times where that has happened though, clients have become very angry and they want justice and so they will really fight.

Several other psychologists relayed examples of how movement into the battleground mentality quickly hindered the progress of claimants. The irony in this situation was outlined by one psychologist who noted that, “those


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people she [claimant] had entrusted her welfare to were actually hell bent on undermining her—she did eventually recover but it took her an extra 12 months.” In another example provided by a rehabilitation provider, a claimant was just about to return to work with support when Her husband suggested that she go to see a lawyer just to make sure [that her rights were being protected], and the lawyer’s message to her was “look, these people are not really looking after you they are just doing what the insurance company is bidding. What you really need to do is to take out a proper claim— this is a terrible thing that has happened to you.” Basically, her psychological state plummeted from then on and she has not worked again.

Most claimants reached a point in this battle when advice from their legal representative was seen as being their only trusted option. This situation is particularly ironic given the fact that they are usually surrounded by so many health professionals and representatives of workplace rights (i.e., union members, peer support systems). Most claimants followed legal advice without scrutiny. “The lawyer had advised me not to go to conciliation because he said they would just white wall me—so I didn’t turn up.” One claimant noted how his medical practitioner had advised him, “once you get into the hands of lawyers, they will tear you to shreds. If you are not prepared to be dragged through the dirt, for an indefinite period of time then forget it.” This type of complacent acceptance of a damaging system was rife throughout the data, indicating that all stakeholders were complicit in perpetuating further injury. This finding was extremely poignant, given that few of the players in the system were satisfied with the role they played during the progress of a claim for psychological injury, but felt powerless to take any alternative course. The battle mentality appeared to push all stakeholders into corners or sides, with every one focusing on defending their position. Even treatment providers commented on how the system forced them to think about defending their own professional status and opinion rather than putting the claimant first. As one medical practitioner noted, “why would any general practitioner want to get into this system just to have your opinion challenged all the way?” Most stakeholders made comments such as, “no one takes responsibility for guiding people through the process—they’re [claimants] just sitting there, kind of at the mercy of this system.” According to several rehabilitation professionals, “they’re [claimants] swept along, just swept along because of the process.” Clearly, at some point, claimants were no longer able to leave the system. Instead, they continued being swept on with little control over their direction, but were often acutely aware that they were trapped in a rapid downward spiral. For instance, all claimants made comments such as, “If I can just clear myself of [employer and insurer], I think I might be back on the road to recovery—I might just start being able to live and forget about this—It’s a matter of too many things all at once and I need to go my own way, yeah, that’ll take a lot of the stress off me.” Perhaps the most telling quote in this regard was provided by an employer who stated, The information we get from the person making the claim is so scant, even the solicitors around town are telling them not to say anything—not to write

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anything down and that just does not help. Even the unions are doing that. You hear yourself say, “for crying out loud, what do you expect us [employers] to do? We can run you through the mill if we want to—but does that serve a purpose?” We have tried to get as much information as we can through getting investigators and talking to the staff and the bosses and all of that. But we just have to go to a full hearing and put the worker through hell because the union said, “do not tell them anything.” Is that fair? It is not fair on us, but it is not fair on him [worker] either. A lot of this is unnecessary.

IATROGENIC INJURIES: WHEN A SYSTEM CAUSES HARM In the medical sector, iatrogenic injuries (i.e., injuries caused by mistakes within the hospital system) are extremely costly and avoidable. It has been recognized in this sector that such injuries must be prevented. The high cost of adverse patient responses to medical treatments has been an important consideration for some time. In the vocational rehabilitation setting, such iatrogenic injuries are rarely considered. There is evidence, however, in this chapter that aspects of the system may have significant costs for society. These costs are ultimately avoidable and, therefore require attention. As noted by Rigby and Litt (2000), iatrogenic injury is difficult to identify without clear guidelines about the pathways that constitute best practice. Nevertheless, injury that is created by the process of managing workers’ compensation claims or any aspect of that system should be considered avoidable and must be examined further. We typically treat contexts or systems as background variables—“information that constrains or determines interpretation of other data” (Whitaker, 1996, p. 349). As such, measurement or recognition of contextual and systemic issues often does not occur until the interpretation of more proximal data is complete. An alternative view of context is to think of it as the lens through which every action or experience should be viewed. Indeed, some researchers have confirmed that context itself should be treated as a critical set of data to be examined and analyzed rather than as merely a tool through which to interpret other data (Whitaker, 1996). As Whitaker noted, the challenge in fully understanding the impact of systemic context is how to explore the system without “relying on the very information whose interpretation it is subject to?” (p. 402). In other words, the stakeholders who provided interviews for this chapter accepted the system and operated within that system often uncritically until directly asked to critique it by a stranger. Undoubtedly, many of those stakeholders will continue to operate within and comply with that system, despite the views expressed in this chapter. To what extent is their knowledge reliable, or is it already tainted by their perspective of the system and influenced by their complicity in that system? It is clear that knowledge is not and cannot be a quantum commodity. By virtue of the way in which knowledge is created and shared, “it is a projected evaluation by some observer” (Maturana & Varela, 1987, p. 174). Systems face continual challenges associated with insufficient resources, poor quality, inefficiency and allocation inequity together with deficient management.


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As Londono and Frenk (1997) noted, “systems are at a cross roads—throughout the world there is a search for better ways of financing and delivering services. There is a sense of urgent innovation” (p. 2). Further, in “today’s complex environment, most problems tend to be inter-related” or systemic in nature, such that focusing on a single aspect of any situation is unlikely to lead to workable solutions. The first steps in examining a system and designing optimal practices is to fully conceptualize the system. As Londono and Frenk (1997) demonstrated, a system should be considered as more than a set of institutions and policies—as a set of structured relationships between those components. The various functions of a system are often incompatible, thus creating complexities and unintended consequences. Good evidence that is derived from a systemic perspective can provide direction and the impetus that is needed to confront “vested interests that oppose enlightened decisionmaking” (Londono & Frenk, 1997, p. 29). In this chapter, we have focused on the interactions between people with psychological injuries incurred through the workforce and the elements of the system in which they find themselves when they lodge a claim for compensation (i.e., what might be called “bureaucratic relationships”) (Handler, 2005, p. 108). These relationships are characterized by power differentials and rigid procedures that ironically do more hard to the individuals who are already injured. Different components of a system cooperate or contradict each other, with serious implications for all parties within the system. For instance, important systemic incentives and disincentives are created by the interaction between different financial or legal arrangements across systems. Policies and regulations often contradict each other, creating an impasse for injured workers. By talking to all the stakeholders in the system, we have highlighted the irony within the system. If the incidence of claims for psychological injury and subsequent costs are to be curtailed, the way in which the system intensifies and compounds psychological injury must be addressed (i.e., lack of validation, emotional issues, too many players with competing agendas, delays, inadequate knowledge about stress, and ineffective communication). Further, the overall system must adopt strategies based on early and effective intervention with a preventive focus that supports individuals and redresses the balance of power. Perhaps the most crucial point to consider is the instigation of legislative and financial incentives for employers to accept greater responsibility and for adversarial approaches to lose their prominence as a way of resolving injury claims. Ironically, the cost of such changes may be easily accommodated by the savings associated with reducing the number of psychological claims and eliminating the factors that result in protracted recovery periods.

REFERENCES CCH Australia. (1990). Workplace rehabilitation manual. North Ryde: Author. Compact Oxford English dictionary. (2005). Oxford: Oxford University Press. Handler, J. F. (2005). Myth and ceremony in workfare: Rights, contracts, and client satisfaction. Journal of Socio-Economics, 34(1), 101–124.

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Kendall, E., Muenchberger, H., & Clapton, J. (2007). Trends in Australian rehabilitation: Reviving its humanitarian core. Disability and Rehabilitation, 29(10), 817–823. Londono, J. L., & Frenk, J. (1997). Structured pluralism: Towards an innovative model for health system reform in Latin America. Health Policy, 41, 1–36 Macquarie Dictionary. (2002). New South Wales, Australia: Macquarie Library. Maturana, H., & Varela, F., (1987). The tree of knowledge: The biological roots of human understanding. Boston: Shambhala. Nowland, L. (1997). Application of a systems approach to the rehabilitation assessment of clients with an occupational stress-related injury. Australian Journal of Rehabilitation Counselling, 3(1), 9–20. Rigby, K. D., & Litt, J. C. B. (2000). Errors in heath care management: What do they cost? Quality in Health Care, 9, 216–221. Weil, D. (2001). Valuing the economic consequences of work injury and illness: A comparison of methods and findings. American Journal Industrial Medicine, 40, 418–437. Whitaker, R. (1996). Managing context in enterprise knowledge processes. European Management Journal, 14(4), 399–406. Workcover. (1999). Work related stress. Western Australia: Workcover.

CHAPTER 11

Equal Treatment in Working Life for People with Disabilities: Sweden and Norway Perspectives Marianne Hedlund, Bodil J. Landstad, and Åsa Svensson

I

n November 2000, the European Union (EU) issued a directive (European Commission, 2000/78) establishing a general framework for promoting equal treatment in employment and outlawing discrimination based on religion, beliefs, disability, age, and sexual orientation (the “framework for the equal treatment directive,” FETD). Equal treatment and non-discrimination are among the most well-developed components of social policy in the EU (Mabbett, 2005). In Scandinavia, antidiscrimination policy is a relatively new type of regulatory policy that approaches disability from the following perspective: “The EU . . . sees disability as a social construct. The EU social model of disability stresses the environmental barriers in society which prevent the full participation of people with disabilities in society. These barriers must be removed” (European Commission, 2003/650, p. 4). The main aim of this chapter is to examine and discuss how this new approach relates to existing policies in selected Scandinavian countries (i.e., two countries on the Scandinavian peninsula, Norway and Sweden) (Caplex, 2007). In this chapter, we more closely examine how Norwegian and Swedish social policies define disability in relation to the EU’s FETD directive. We examine the relationship between the traditional methods of supporting people with disabilities in Swedish and Norwegian social policy and the principles put forth in the EU’s FETD directive. Current EU policy aims to harmonize rules and legislation across EU countries (Pennings, 2001) and as a result has raised the profile of social and labor market issues within the EU’s inner market (Jacobsson, Johansson, & Ekengren, 2001). Recently, however, some commentators have claimed that the EU policy has Europeanized Scandinavian social policy (Kautto, Fritzell, Hvinden, Kvist, & Uusitalo,

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2001; Pierson, 2001). There is clear value in universal standards that can be applied across a range of countries. However, in developing minimum standards, it is important not to diminish effort in countries where existing social policy is already advanced. We conclude that it is important to value existing approaches to disability policy at the same time as setting minimum standards to which all countries can aspire. In Scandinavia, the costs of integration and accessibility have primarily been regarded as a public matter, that is, it is generally agreed that society at large should bear the costs for adapting environments to support people with disabilities. This is a benchmark that already exceeds the EU directive, creating an interesting interaction between the Sweden and Norway and EU approaches.

EU MEASURES FOR CREATING EQUAL TREATMENT IN WORKING LIFE The EU’s FETD directive mirrors that of Article 13 of the Amsterdam Treaty of 1997 (Boldersson & Mabbett, 2002). According to the FETD, people with disabilities are provided protection that shall prevent discrimination that diminishes their capacity to provide for themselves through paid labor. Equality policy, as applied to disability, means that EU member countries must secure measures and initiatives that do not discriminate against persons with disabilities in relation to employment and work, including promotion, training, conditions of employment, and membership in workplace organizations. Antidiscrimination laws are the primary mechanisms for creating equal treatment for people with disabilities. It is presupposed that all workers covered by the protection of the FETD directive shall be assured equal treatment via antidiscrimination mechanisms. All workers, regardless of race, ethnicity, religion or faith, disability, age, or sexual orientation shall have access to work without being discriminated against. The EU directive prohibits both direct and indirect differential treatment on the grounds of disability and presupposes that member countries coordinate their national legislation in relation to the principles of equal treatment. In reality, however, definitions of discrimination and use of the concept of disability vary considerably across member countries (Boldersson & Mabbett, 2002). The directive provides no definition or predetermined criteria for what shall be regarded as disability, therefore leaving open the question of which groups can claim rights based on the directive. How disability shall be specified or operationalized is largely left to the individual member countries. Consequently, member countries can follow different praxis with respect to which areas are subject to antidiscrimination legislation and how broadly or narrowly disability is defined. Consequently, the definition of disability differs significantly across EU member countries (Boldersson & Mabbett, 2002). To the extent that the term is defined, various degrees of open or narrow criteria are applied. Even within Scandinavian countries, there are significant differences. The Swedish legislation defines disability as a person who has permanent limitations as a result

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of illness or injury that incurred at birth, after birth, or that can be expected to develop (Svensk Författningssamling, 1999). In contrast, the Finnish law employs a narrow and clinical definition and forbids discrimination of people with health conditions (Finnish Criminal Legislation, 1995). Definitions also vary with regard to which groups of workers shall be protected. It is unclear whether legislation includes people with a disability who are seeking employment or just to workers with disabilities who already are employed. There is also considerable ambiguity as to whether antidiscrimination laws primarily intend to protect people whose work performance (henceforth “productivity”) is not limited or only minimally limited by their condition, or whether people who are substantially limited in what they can do are also seen as potential beneficiaries of the law. This ambiguity reflects different conceptions of disability in these laws. As a result of definitional differences across EU countries, there is large national variation with respect to the rights individuals are afforded in different countries. In some countries, antidiscrimination laws allow, for example, for disability to be defined according to special or individual criteria. For example, the Portuguese framework allows only the most severely work-incapacitated citizens to be assessed regarding their right for assistance (giving the status called “grande invalidez”) (Boldersson & Mabbett, 2002). Other countries apply more general criteria for whom they consider a target group for antidiscrimination efforts. This is the case in Norway and Sweden with respect to working environment legislation (Arbeidstilsynet, 2005; Arbetsmiljöverket, 2005). According to such legislation, workers must define themselves as belonging to a target group to take advantage of the programs provided under antidiscrimination laws. Thus, across EU member countries, there is considerable uncertainty surrounding whether antidiscrimination laws can be triggered through personal, self-experienced definitions of disability or whether disability needs to be proven through a specified authorization or verification practice by professionals or similar to be valid. In the European context, we see two main tendencies with respect to the aims of antidiscrimination legislation for persons with disabilities. One tendency is to focus on providing people with disabilities with the same opportunities as others; that is, equality in the form of right to participation or access to employment. These different conceptions of equality are reflected in the policies of Sweden and Norway. Both provide an example of a “radical equality of opportunity” approach that is partly group-oriented. The second tendency is to focus on seeing that people with disabilities can achieve the same results in employment as other groups in the population; that is, to achieve equality of results (Boldersson & Mabbett, 2002). In this regard, the Swedish approach seems to focus on achieving equality of results. The Norwegian philosophy is similar in that it is based on general rights afforded to all workers. The Swedish and Norwegian conception of equality is based on redistribution, with mainstreamed positive action toward equality as a result for workers with disability. The EU operates through a hybrid system of intergovernmentalism and supranationalism. In certain areas it depends on agreement between the member

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countries. However, it also has supranational bodies, able to make decisions without the agreement of all national governments (European Commission, 2007a, 2007b). The FETD directive has the status of intergovernmental cooperation between member countries of the EU. The EU has developed a single market through a standardized system of laws that apply in all member countries, guaranteeing the freedom of movement of people, goods, services, and capital. However, the implementation of FETD can mean that member countries will adapt their approach to a minimum standard of rights for workers with disabilities. Regulations issued by the EU aim to stimulate an improvement in social policy measures, rather than regulate down existing measures that are successful. It is the intention of the FETD directive that competency among member countries shall move in the “right direction” (Jacobsson et al., 2001). However, this could also mean that countries choose a soft line of adapting to FETD. From the perspective of reducing poverty and inequality for disabled workers, the FETD directive can present a conceptual problem for the applications. On one hand, FETD can give inspiration to clearly defined rights for people with disabilities. On the other hand, these rights may flow away from social solidarity and focus on universal rights that have been a common way to approach these issues in Scandinavia.

SOCIAL WELFARE THROUGH REDISTRIBUTION Compensation is a key principle of the Sweden and Norway approach (Johansson & Hvinden, 2007), based on the assumption that individuals with disabilities shall not bear the added costs of their disability alone. Society shall provide solutions as well as bearing the costs. Compensation programs are influenced by a relational perspective of disability in that it is assumed that disability will vary according to the situation in which it occurs. This means that disability rely on both internal and external factors when a gap appears. A mismatch can occur between individual premises (such as lack of capacity, mental or physical shortcoming) and environmental or situational premises for an interaction. In that sense a relational perspective, as understood in the Sweden and Norway tradition, represent more of an umbrella term (Shakespeare, 2006). Such a perspective leads to definitions and criteria to determine when an environment or situation can be regarded as accessible to people with disabilities and to compensate for the costs of making an environment or situation accessible. Generally, compensation programs have been directed at compensating individuals for the added costs of making adjustments to accommodate their disabilities or for changing environmental factors. Compensation programs have been financed via the collective national social insurance scheme (Gustafsson et al., 1999) and have consisted of individual payments (for example payment for technical support apparatuses) or parallel payments to compensate the costs of extra service needs or support (interpreters, added cost of wear and tear on clothing, text telephone, computer, hearing aid, redesign of residence, etc). Some measures also compensate for collective solutions or


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adaptations, for example, extra costs associated with reconstruction of buildings or technical adaptations at places of employment or for technical adaptations of cinemas and restaurants.

THE SECTOR PRINCIPLE In the 1970s, a principle emerged that special programs or measures must be integrated into—not established alongside—the general service system that supports the whole of society. Thus, all sectors of government (i.e., health, employment, education) are required to provide services for people with disabilities. Over time this principle has come to be referred to as the “principle of sector responsibility” (NOU, 2001:22). The principle is based on the assumption that people with disabilities are influenced by social planning and organization just as anyone else in society (NOU, 2001:22; Solvang, 1999). Different sectors of life can create barriers, and each social sector must define which adjustments should be made to allow those with disabilities to participate. In Sweden, for example, people who work within the area of rehabilitation are expected to cooperate across different sectors, administrative divisions, and rules (Lindqvist, 2000). In other words, the support or services that are provided in one social sector are expected to function across other sectors in an integrated way.

THE SOLIDARITY PRINCIPLE Generally, social policy for groups with disabilities has been more closely linked to providing these groups with preferential resources or redistributing resources to those with disabilities (Whittle & Halvorsen, 2007). Social inequality has been fought through the use of universal measures and redistribution policies to level out differences between different groups (EspingAndersen, 1996). Consequently, an important goal for disability policy in Sweden and Norway is to secure equality in living conditions for persons with disabilities, a policy that aims to normalize and contribute to social integration. To the extent that regulatory policy measures, such as antidiscrimination law, have been discussed, these have been seen as complementary to the main principles of social integration of those with disabilities (NOU, 2005:8). Responsibility for the integration of people with disabilities lies with society. Social policy measures must not only focus on providing the individual with various forms of support but also stimulate good collective organization that makes participation possible. Whether these aims have been achieved through existing measures has been a point of debate in Norway. Sweden has an extensive but fragmented body of civil rights legislation to protect against discrimination on the basis of disability. A disability ombudsman is mandated to monitor questions that touch on the rights and interests of those with disabilities. Cases of discrimination based on disability are rarely handled within the legal system, and the general public does not seem to be aware of such problems (NOU, 2005:8).

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REEMPLOYMENT POLICY Reemployment policy is central to Sweden and Norway social policy and is based on the principle that social policy should actively contribute to participation in working life when possible (i.e., that the welfare system should motivate participation wholly or partially rather than simply contributing passive monetary support). Thus, most social policies in Sweden and Norway include conditions directly linked to reemployment policy as a guiding principle. A point of discussion is whether such reemployment policies have both intended and unintended functions. Such functions might be (a) to enable people to re-enter working life, (b) to activate people outside working life by various types of actions, (c) to provide public or private sectors with a subsidized labor supply if and when possible, (d) to set a certain moral standard in working life, and (e) to save public expenses in the form of income support when and if possible (Kautto, Keikkilä, Hvinden, Marklund, & Ploug, 1999; Pedersen, 2002; SOU, 2006:86). The EU’s FETD directive was hastened changes in Swedish and Norwegian labor market legislation to ensure equal treatment of persons with disabilities in working life. Both labor market legislations were altered in 2005 as a result of the directive (Arbeidstilsynet, 2005; Arbetsmiljöverket, 2005). The laws do not provide persons with disabilities a general right to work, but prevent general discrimination in working life. The objectives clauses in both Norwegian and Swedish labor market legislation ensure that every place of employment shall be formed such that all workers are fully protected against physical or psychological damages. This ensures that workers, as well as those with disabilities, have the right to a working environment that meets with the welfare standards that at any given time are commensurate with technological and social developments in society. Consequently, the FETD directive has led to special rights for those with disabilities while they are in active employment. The introduction of the equal treatment principle aims to create a labor market in which qualifications and achievements are decisive, not whether one has a disability. For this reason, new regulations forbidding discrimination on the basis of disability have been introduced. The aim of these regulations is to safeguard a labor market that includes rather than excludes people with disabilities from participating in working life when and where this is possible and desirable (NOU, 2007; SOU, 2006:86). In the Swedish Work Environment Act (Svensk Författningssamling, 1977:1160) employers, by adapting working conditions or implementing another applicable measure, shall take into consideration employees’ special predispositions in relation to work. In planning and setting up work and tasks, employers must take into account that employees’ predispositions to carry out tasks vary. The same is true in Norwegian legislation, where the employer shall make possible adaptations in working conditions according to the predisposition of the individual employee and his or her life situation (Lovdata, 2005). It has not been common to give people with disabilities a constitutional right to work. Nonetheless, in Norway, state authorities are obliged to prepare


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conditions so that these people can make a living through their own labor, but legislation does not mandate a general right or obligation to work (Larsen, 2002). Despite the right to assert personal rights in relation to participation in working life, Norwegian and Swedish labor laws have long demanded that employers and workplaces give special consideration to adapting working conditions for employees with disabilities (Larsen, 2002; Michailakis, 2001). Implicitly, these laws suggest that workers with disabilities shall be protected against discriminatory treatment and exclusion from working life, even if this is not explicitly stated in the text of the law. In this field, the laws in Sweden and Norway can be said to provide security for people with disabilities against discriminatory treatment in working life. This applies first and foremost to those who are already employed and to a lesser extent those seeking employment who have disabilities. The legislation on working life has two goals. One is to regulate which obligations an employer has when an employee encounters problems in carrying out work due to illness, reduction in capacity, or disability. The second goal is to regulate how possible added costs of individual or environmental adaptations shall be handled. In Sweden, the law on prohibition against discrimination in working life of persons with disabilities (Svensk Författningssamling, 1999:132) even applies to persons who do not have a permanent relationship to a place of employment. Employers must also provide reasonable support and adaptive measures such that those with disabilities are in a position similar to that of those without disabilities. Through various programs, employers can receive different types of support aimed at stimulating employment of those facing difficulties finding regular employment, including the added costs associated with recruiting and hiring. Support can be provided for permanent employees as well as for probationary employees and other short term employment situations. The Norwegian Working Environment Act regulates how places of employment shall be organized such that those with disabilities can work there. Similar to their Swedish counterparts, employers are given responsibility for adapting work or tasks as much as possible, and this gives those with disabilities a certain legal protection with respect to dismissal and for accommodating their needs (Lovdata, 2005). For example, following from the provisions set forth individuals have extended legal protection against unfounded dismissals. These rights can be triggered if an employee feels he or she has received discriminatory treatment and was dismissed without proper grounds and activates them through contact with the labor board or a lawyer. In Sweden, separate provisions and legislation (Svensk Författningssamling, 1999:132) regulate how an employer can terminate, dismiss, or give a leave of absence to an employee. Workers with disabilities are endowed with individual rights in both Norwegian and Swedish legislation under specified preconditions. This can be in relation to a right to support for necessary rebuilding or to make accommodations at the workplace when and where necessary, and the right to accessible workplaces and tasks. If an employer hires a new employee with disabilities the costs of these adjustments are, however, fully covered by social security services (Pedersen, 2002). The same is true in Sweden (Michailakis, 2001).

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Through the law on prohibition against discrimination in the workplace based on disabilities (Svensk Författningssamling, 1999:132), the employer is obliged to implement support and adaptive measures that can be demanded. Added costs associated with adaptations are regulated through different support programs and economic contributions both from the state and local municipality. The same applies if costs are incurred for hiring a new employee during this phase of the employment period. In Norway, several public committees have noted the need for similar legislation. According to a report, people with reduced capacities do not enjoy the same civil rights as others and are not treated equally with the application of legislation. The report therefore recommends that an antidiscrimination law be investigated to ensure that people with disabilities are not discriminated against (NOU, 2005:8). In Sweden, recommendations have been made for a collective law covering prohibition and other measures against discrimination. The new law shall largely replace current discrimination laws but would also provide more extensive protection for more people and in more social arenas. The law shall aim to prevent discrimination and in other ways stimulate equal rights for people with disabilities. A point of departure is that protection against discrimination shall be as similar as possible for all bases of discrimination and in all arenas where discrimination occurs. It is even suggested that neglect to adopt measures to ensure accessibility should be regarded as discrimination (SOU, 2006:22). A point that has been made in Sweden and Norway, is that for persons with disabilities to achieve equal treatment, social barriers that prevent accessibility for people with disabilities must be removed (NOU, 2002:22; SOU, 2006:86). In terms of the conceptions of equality for people with disabilities as outlined, the Swedish and Norwegian approach is to go beyond the individual merit conception of disability and to incorporate elements of positive action toward achieving accessibility for people with disabilities in society. This approach suggests that positive action may be mainstreamed, in the sense that all workers have certain rights to positive action. The opportunity for personal development and accessibility is a central idea in the Swedish and Norwegian welfare model. In Sweden, the government recently established a discrimination taskforce assigned to oversee and streamline all legislation pertaining to discrimination. The results from this work were delivered in February 2006 in the form of a final report. In the report, the task force recommends the introduction of a new collective law covering prohibition and other measures against discrimination (SOU, 2006:86). A new antidiscrimination law will come into force by January 1, 2009 (Svensk författningssamling, 2008: 567). In Norway during October 2007, the Minister of Children’s Affairs and Equality was awarded responsibility for preventing discrimination in working life and began work with a new antidiscrimination law for disability (Dokumentasjonssenteret, 2007). The Cabinet minister shall also have responsibility for coordinating policies for persons with reduced capacities. Norway also passed a new law prohibiting discrimination against people with disabilities. This law will also take effect on January 1, 2009 (Lovdata, 2008).


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The establishment of rights to reasonable accommodation for existing employees with disabilities can be understood as arising from the established corpus of laws and practices governing employers’ obligations to their employees. Here Sweden and Norway follow the European social model that gives extensive employee rights; by contrast with the U.S. situation (Boldersson & Mabbett, 2002). Most European countries afford employees an extensive set of rights in relation to the employer after a minimum period of employment. These rights include the right to sick pay and paid parental leave, various protections in circumstances of individual and mass redundancy, and protection against unfair dismissal, particularly for workers with disabilities.

CONCLUSION Swedish and Norwegian social policies relate to the EU’s FETD directive in a unique way. Several traditional measures have the same goals as those stated in the EU directive, namely, to prevent unequal treatment of those with disabilities. However, Swedish and Norwegian measures tend to focus less on indirect discrimination and more on a strict regulation of the conditions for accessibility in working life. The measures that exist in both of these areas are constructed with an underlying understanding that public regulations shall contribute to equality and seek to secure equality of conditions, rather than a general prohibition of discrimination against a person on the basis of disability. In some areas, the principle behind equality that is put forth in the directive runs counter to the traditional principles underlying regulations in Sweden and Norway. As an example of this, previous programs and principles promoting reemployment of workers with disability had an integrative and normalizing perspective, giving less attention to regulating the civil rights of workers with disabilities against discrimination. Traditionally, in Sweden and Norway, both compensatory special measures and universal regulation have been used to prevent the marginalization of those with disabilities in society. This approach is most evident in the labor sector, where we find both general regulations and individual rights operating in unison. Many of these rights are allocated on the basis of particular rather than general definitions of disability, for example different types of work disabilities. Antidiscrimination laws, such as those recommended under the EU directive, do not necessarily provide general entrance to the labor market (Boldersson & Mabbett, 2002). Indeed, antidiscrimination laws in Europe are ambivalent on this point. For instance, in some countries in the EU, people with disabilities are assured protection and rights to employment, but barriers in working life exclude them from fulfilling their rights. Antidiscrimination laws that do not specifically address the heterogeneous challenges facing those with disabilities in working life will not necessarily provide outcomes. The implementation of European discrimination laws across the EU has been limited. Countries within the EU have not always submitted when rights legislated by the European Union have conflicted with their own social programs. Member countries have tenaciously defended their programmatic competence in relation to practicing social policy (Mabbett, 2005). However,

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new images of disability in the public eye can be developed, and are indeed promoted, through the implementation of the FETD directive.

REFERENCES Arbeidstilsynet. (2005). Lov om arbeidsmiljø, arbeidstid og stillingsvern mv. Lov av 17. juni 2005 no. 62; Arbeidsmiljøloven. Retrieved October 20, 2007, from www .arbeidstilsynet.no/c26980/lov/vis.html? tid=28118. Arbetsmiljöverket. (2005). Arbetsmiljölagen med kommentarer i lydelse från den 1 juli 2005. Retrieved October 20, 2007, from www.av.se/dokument/publikationer/ bocker/h008.pdf. Boldersson, H., & Mabbett, D. (2002). Definitions of disability in Europe: A comparative analysis. Final Report of September 13, 2002, to European Commission, Employment and Social Affairs. Caplex. (2007). Skandinavia. Word definition retrieved October 20, 2007, from www .caplex.no/Web/ArticleView.aspx?id=9332364. Dokumentasjonssenteret. (2007). Barne- og likestillingsministeren: Får ansvar for antidiskrimineringsarbeidet. Retrieved October 20, 2007, from www.dok.no/ faar-ansvar-for-antidiskrimi neringsarbeidet-.545280.html. Esping-Andersson, G. (Ed.). (1996). Welfare states in transition: National adaptations in global economies. London: Sage. European Commission. (2000). Council directive establishing a general framework for equal treatment in employment and occupation (COM 78/2000). Retrieved October 20, 2007, from eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=CE LEX:32000L0078:EN:HTML. European Commission. (2003). Equal opportunities for people with disabilities: A European action plan. Commission communication (COM 2003/650). Retrieved October 20, 2007, from europa.eu/scadplus/leg/en/cha/c11414.htm. European Commission. (2007a). The EU single market: Fewer barriers, more opportunities. Europa, European Commission. Retrieved on September 27, 2007, from ec.europa.eu/internal_market/top_layer/index_1_en.htm. European Commission. (2007b). Activities of the European Union: Internal market. Europa. Retrieved on June 29, 2007, from europa.eu/pol/singl/index_en.htm. Gustafsson, B., Aaberge, R., Cappelen, Å., Pedersen, P. J., Smith, N., & Uusitalo, H. (1999). The distribution of income in the Nordic countries. Changes and causes. In M. Kautto, M., Heikkilä, B., Hvinden, S., Marklund, & N. Ploug (Eds.), Nordic social policy. Changing welfare states. London: Routledge. Jacobsson, K., Johansson, K. M., & Ekengren, M. (2001). Mot en europeisk välfärdspolitik? Ny politik och nya samarbetsformer i EU. Stockholm: SNS Förlag. Johansson, H., & Hvinden, B. (2007). Nordic activation reforms in a European context—s distinct universalistic model? In B. Hvinden & H. Johansson (Eds.), Citizenship in Nordic welfare states: Dynamics of choice, duties and participation in a changing Europe. London: Routledge. Kautto, M., Fritzell, B., Hvinden, B., Kvist, J., & Uusitalo, H. (2001). Nordic welfare states in the European context. London and New York: Routledge. Kautto, M., Heikkilä, M., Hvinden, B., Marklund, S., & Ploug, N. (1999). Nordic social policy. Changing welfare states. London: Routledge. Larsen, P. A. (2002). Arbeidsmiljøloven. 2. reviderte utgave. Kommentarer, praksis, veiledning. Oslo: Gyldendals Akademiske/Tiden forlag. Lindqvist, R. (2000). Att sätta gränser. Organisationer och reformer i arbetsrehabilitering. Umeå: Borea Bokförlag.


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Lovdata. (2005). Lov 2005-06-17 no. 62: Lov om arbeidsmiljø, arbeidstid og stillingsvern mv. (Arbeidsmiljøloven). Retrieved October 20, 2007, from www.lovdata .no/all/hl-20050617-062.html. Lovdata. (2008). Lov 2008-06-20 no. 42 om forbud mot diskriminering på grunn av nedsatt funksjonsevne (Diskriminerings- og tilgjengelighetsloven). Retrieved November 20, 2008, from www.lovdata.no/cgi-wift/wiftldles?doc=/usr/www/ lovdata/ltavd1/filer/sf-20080620-0631.html&emne=diskrimineringslov*&. Mabbett, D. (2005). The development of rights-based social policy in the European Union: The example of disability rights. Journal of Common Market Studies, 43(1), 97–120. Michailakis, D. (2001). Information and communication technologies and the opportunities of disabled persons in the Swedish labour market. Disability & Society, 16(4), 477–500. NOU 2001:22 (Norwegian Government’s Official Report). From user to citizen—a strategy for the dismantling of disabling barriers. English short version of the summery in NOU 2001:22. Oslo: Arbeids- og inkluderingsdepartementet (Ministry of Labour and Social Inclusion). NOU 2005:8 (Norwegian Government’s Official Report). Likeverd og tilgjengelighet. Rettslig vern mot diskriminering på grunnlag av nedsatt funksjonsevne. Bedret tilgjengelighet for alle. Oslo: Justis- og Politidepartementet (Ministry of Justice and the Police). NOU 2007:4 (Norwegian Government’s Official Report). Ny uførestønad og ny alderspensjon til uføre. Oslo: Arbeids- og inkluderingsdepartementet (Ministry of Labour and Social Inclusion). Pennings, F. (2001). Introduction to European social security law, 3rd ed. The Hague: Kluwer Law. Pedersen, J. T. (2002). Rehabilitering av velferdsforvaltningen. Arbeidslinjen— Samordning—Klienteffekt. Oslo: Kommuneforlaget AS. Pierson, P. (2001). The new politics of the welfare state. Oxford: Oxford University Press. Shakespeare, T. (2006). Disability rights and wrongs. London: Routledge. Solvang, P. (1999). Funksjonshemmingen og det normale—om nødvendigheten av å balansere. In J. Froestad, P., Solvang, & M. Söder (Eds.), Funksjonshemming, politikk og samfunn. Oslo: Gyldendal Akademisk. SOU 2006:86 (The Government’s Official Report). Mera försäkring och mera arbete. Stockholm: Socialförsäkringsutredningen, Socialdepartementet (Department of Social Affairs). Retrieved October 20, 2007, from http://www.sou.gov.se/ socialforsakring. Svensk författningssamling (SFS) 1977:1160 (Swedish Constitution Law Body). Arbetsmiljölag (Working environment act). Stockholm. Svensk författningssamling (SFS) 1999:132 (Swedish Constitution Law Body). Lag om förbud mot diskriminering i arbetslivet på grund av funktionshinder. Stockholm. Svensk författningssamling (SFS) 2008: 567 (Swedish Constitution Law Body). Diskrimineringslag. Stockholm. Whittle, R., & Halvorsen, R. (2007). From disabling barriers to participation. The opportunities created by the EU equality strategy. In B. Hvinden & H. Johansson (Eds.), Citizenship in Nordic welfare states: Dynamics of choice, duties and participation in a changing Europe. London: Routledge.


CHAPTER 12

Wellness Rhetoric: Implications for Policy and Practice in Australian Childhood Health and Disability Services Lauren J. Breen and Sherry Saggers

W

ellness approaches to service provision emerged from the social model of disability and are increasingly preferred throughout the health and disability service sectors worldwide. However, research continues to demonstrate that many health services and individual practitioners continue to operate according to medical models of illness. The aim of this chapter is to explore the rhetoric of wellness approaches to health and disability. As the first step toward embedding wellness approaches within childhood health and disability policy and practice, we investigated the policy and procedure documents of major childhood health and disability services across Australia. We conclude with some suggestions for how wellness approaches might be incorporated into policy and practices of childhood health and disability services. Approximately four million Australians, or 20 percent of the country’s population, are classified as having a disability, and this includes 317,900, or 8.3 percent, of the nation’s children (Australian Institute of Health and Welfare, 2006). Childhood disability often has a profound effect on the family or household unit, especially in relation to the responsibility for care of a child with a disability (particularly by mothers): the negotiation of the often complicated and confusing structured support services and systems of care; the potential for relationship difficulties with other children and spouses, restrictions in the ability to participate in leisure activities, and loss of friendship networks; and economic hardship (Australian Institute of Health and Welfare, 2006; Dodd, Saggers, & Wildy, 2007; Murray, 2007; Trute, HiebertMurphy, & Levine, 2007). Although the definitions of disability remain contested within Australia (Bowles, 2001), we define disability in accordance with the notion that a

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person with impairment is “disabled” through social and environmental barriers (see Thoreau, 2006, pp. 446–447, or Barnes & Mercer, 2006, pp. 5–6, for discussions of terminology and its implications). However, while the socialpolitical conceptualization appears to be the leading influence on social policy in Australia, the medical and economic paradigms are equally dominant when it comes to practice (Bowles, 2001). Despite the medical and economic dominance, wellness approaches, which emphasize health and well-being, are increasingly preferred for the delivery of health and disability services across Australia and internationally (Breen, Green, Roarty, & Saggers, in press).

THE SHIFT TO WELLNESS Wellness is generally defined as a multifaceted and holistic understanding of health (e.g., Breen et al., in press; Jones & Kilpatrick, 1996; Kahn & Juster, 2002; Larson, 1999) and aligns with the social model of disability (Oliver, 1983) and the World Health Organization’s (1948) enduring definition of health as “a state of complete physical, mental and social well-being, not merely the absence of disease or infirmity” (p. 2). Throughout Australia, there are increasing demands by individuals and families for the delivery of health and disability services that empower and attend to issues of client wellbeing, independence, self-determination, and rights to meaningful and productive lives (Breen et al., in press). Further, principles of wellness approaches to health and disability also align with and are embedded within various national health strategies and policies as well as in similar state initiatives, which argue for resources to be directed to public health approaches that improve quality of life rather than acute care interventions. Despite the paradigm shift toward wellness in Australian health services, the presence of theoretical, empirical, social, and political demands toward wellness (Breen et al., in press) and the recognition of and support for wellness within allied health disciplines, these remain misaligned with the practices in the health and disability sectors (Bowles, 2001; Goodgold, 2005; Hanna & Rodger, 2002; Saggers et al., 2002; Schalock, 2004; Wearing, 1999). Although many childhood health and disability services within Australia are committed to embedding wellness approaches into the practice of allied health service delivery, they face the challenge of implementing such approaches where the medical and economic models remain the powerful drivers of practice.

TOWARD EMBEDDING WELLNESS APPROACHES IN POLICY AND PRACTICE A fundamental strategy for achieving health and wellness is the translation of research into policy and practice (Krahn, Putnam, Drum, & Powers, 2006). The incorporation of wellness approaches into childhood health and disability services requires holistic and complex changes to allied health professional education and training, practice, funding, and research (Breen et al., in press). Herein, we are concerned with the examination of policy and

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procedure documents of major childhood disability services providing allied health services within Australia. Our aim was to determine how wellness is positioned rhetorically within key documents of selected childhood health and disability providers across Australia. Using a multiple case study approach and content analysis, we describe how and where the indicators of wellness appear in the documents of major childhood health and disability providers. The key indicators of wellness, as identified in Breen et al. (in press) guided the study. A multiple case study approach was employed because it is systematic, contextual, and utilizes multiple sources of data (Burgess-Limerick & Burgess-Limerick, 1998; Robson, 2002). Through state government health Web sites, we identified all organizations and services providing any type of health or disability service to children (0 to 18 years) within three Australian states (Queensland, South Australia, and Western Australia). These lists were then reviewed by childhood allied health service providers and stakeholders within the states who provided details of relevant additional services. This process resulted in 10 services— three in Queensland, three in South Australia, and four in Western Australia. These organizations employed a range of allied health professionals, primarily occupational therapists, physiotherapists, speech pathologists, psychologists, and social workers. The services provided allied health services to children (0 to 18 years) either for specific impairment (i.e., vision; n = 1) or multiple impairments (n = 9), and included both government (n = 5) or not-for-profit nongovernment agencies (n = 5). An initial perusal of the services’ Web sites and consultation with allied health professionals in the childhood health and disability sector indicated that the policies and procedure documents requiring examination would include Web pages, annual reports, and strategic plans. Where annual reports or strategic plans were not available on the sites, the services were contacted and access to copies of these documents was requested. To recognize a wellness approach within these policy and procedure documents, we searched for the presence of six key indicators of wellness approaches as identified in a review of the literature (Breen et al., in press) and via a process of consultation with allied health professionals employed in selected childhood health and disability services across Australia. The six key indicators were: • • • • • •

shared control between client and practitioner; holistic definitions of health; individualized support, therapy, and intervention; the use of multidisciplinary teams; the provision of support from community-based settings; and advocacy/the politicization of health.

A matrix, consisting of a table where the columns represented the indicators of wellness and the rows represented the services, was constructed to record the presence (and therefore the absence) of evidence demonstrating each of the six key indicators of wellness. The construction of the data matrix was advantageous because it facilitated the systematic and logical reduction

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and display of the data (Miles & Huberman, 1994). The Web sites, annual reports, and strategic plans for each organization were searched and excerpts that reflected each of the six key indicators were transposed into the matrix. In addition to the manual search, keywords (e.g., multidisciplinary, advocacy, wellness, decision making) within the six indicators were searched for using each Web site’s search facility. Once the matrix was constructed, a content analysis was performed on the data (Miles & Huberman, 1994; Robson, 2002). As well as facilitating the identification of wellness correlates within each organization, the matrix also facilitated the identification of patterns, themes, and contradictions that emerged across the organizations (Miles & Huberman, 1994). The analysis process resulted in a description of how and where the correlates of wellness appear in the documents and Web sites of the major Australian childhood health and disability providers.

THE RHETORIC OF WELLNESS An overview of each of the 10 selected childhood health and disability services, and the presence of wellness indicators within them, is presented in Table 12.1. The number of wellness indicators identified in the Web site pages, annual reports, and strategic plans of each service ranged from just two to all six. The most common were: • • • • • •

holistic definitions of health (n = 9); use of multidisciplinary teams (n = 9); provision of support from a community-based setting (n = 8) shared control between client and practitioner (n = 6); presence of individualized support, therapy, and intervention (n = 5); and advocacy/the politicization of health (n = 5).

Overall, the Web site pages, annual reports, and strategic plans of the nongovernment services were more likely than government documents to include more of the key indicators of wellness. Each of the key indicators is presented next, with examples demonstrating how each was embedded within the Web site pages, annual reports, and strategic plans of the selected childhood health and disability services within Australia. All services are represented by their code number (see Table 12.1) and all names have been changed.

Holistic Definitions of Health This indicator was evident in the use of phrases concerning the promotion of health. For example, the services aimed to promote “life-long health” (Service 1), aimed to “improve and promote their health and well-being” (Service 9), and stated that their mission is to “promote, maintain, and restore the health of women, children, and young people” (Service 5). Some stated that they assisted the children to “get the most out of life” (Service 3), promoted

Table 12.1 Code

Presence of Key Indicators of Wellness in Selected Childhood Health and Disability Services in Australia

Description of Service

Presence of Wellness Indicators

1

A state-wide, government-funded children’s hospital.

2

A state-wide, government-funded service for children (primarily preschool age) with developmental and behavioral concerns. A nongovernment service for children with physical, communication, and sensory impairments living in the main city of the state. A state-wide, nongovernment service for people with vision impairment; includes a children’s service team specifically to meet the needs of children who are blind or vision impaired. A state-wide, government-funded children’s hospital. A state-wide, nongovernment service for children with physical and other impairments.

Holistic definition of health; community-based; advocacy/the politicization of health. Multidisciplinary teams; community-based; shared control.

3

4

5 6

7

A state-wide, nongovernment service for children with vision and/or hearing impairments or communication disorders.

8

A state-wide, government-funded children’s hospital across the state and neighboring areas. A state-wide, government-funded service for children with developmental and behavioral concerns. A state-wide, nongovernment service for children with various physical impairments.

9 10

Shared control; holistic definition of health; individualized support; multidisciplinary teams; community-based; advocacy/the politicization of health. Shared control; holistic definition of health; individualized support; multidisciplinary teams; community-based; advocacy/the politicization of health. Holistic definition of health; multidisciplinary teams. Shared control; holistic definition of health; individualized support; multidisciplinary teams; community-based; advocacy/the politicization of health. Shared control; holistic definition of health; individualized support; multidisciplinary teams; community-based; advocacy/the politicization of health. Holistic definition of health; multidisciplinary teams; community-based. Holistic definition of health; multidisciplinary teams. Shared control; holistic definition of health; individualized support; multidisciplinary teams; community-based.

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“success in education and all aspects of their lives” (Service 4), helped the children “develop skills and achieve greater personal control and independence on their lives” (Service 6), encouraged them “to be more meaningfully involved in the world around them” (Service 7), and enabled them “to achieve their maximum individual potential for participation in the community” (Service 10). The statements drew on the notion of multiple systems of health, including but not limited to the physical, psychological, social, and the educational, which aligns with the World Health Organization (1948) definition of health as well as social-political conceptualizations of health and disability (e.g., Finkelstein, 2001; Gabel & Peters, 2004; Marks, 1999; Oliver, 1983; Schalock, 2004). A holistic definition of health was also present in the vignettes about clients whereby the children were described primarily as “regular” children first, and where the child’s impairment and the therapy services they received from the service were secondary. This strengths-based approach is illustrated in the following example from parents of a child in receipt of services from Service 6. We asked the coordinator [of service] if Alicia could join them, even though it was obvious Alicia could not do the same things as the other four year olds. [The coordinator] welcomed Alicia and encouraged her participation. . . . At the beginning of the season Alicia would walk through each activity as long as someone held her hand. There were some activities she just couldn’t do, but for the most part she tried—she was slow and held every one up, but the other kids just moved around her. They were having too much fun to worry about Alicia. The other parents were as encouraging to Alicia as they were with their own kids. By the end of the season Alicia was independently doing the relays, the long jump, and with just a little help, she was getting though the obstacle course. . . . Her skill level improved every week, and along with the skills came confidence and enormous satisfaction. This is what junior sport is all about and Alicia was part of it.

Some of the services emphasized other roles that complemented the provision of therapy. These included professional consultancy, training, and support for families, teachers, and service providers (Service 3), provision of resources and assistance on the purchasing of aids for families and schools (Service 3), fact sheets on various health issues (e.g., child nutrition) (Service 9), and the delivery of health promotion programs (Service 5).

Use of Multidisciplinary Teams The presence of this indicator ranged from a simple list of the range of health professionals who were employed within the service to an emphasis on health professions working together to provide the best service to clients and their families. An example of the latter is Service 3’s “multidisciplinary teams of professionals are committed to improving the quality of children’s lives.” However, this indicator of wellness was not elaborated on in the analyzed documents. It is often assumed that the presence of multidisciplinary teams in health care settings results in democratic processes between members and better services (O’Connor, Fisher, & Guilfoyle, 2006; Shaw, de Lusignan, & Rowlands, 2005).

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Despite this assumption, moves toward multidisciplinary teams and shared control between disciplines have also been problematic. Research has demonstrated that multidisciplinary health care teams often reveal no improvement in quality of care, communication is frequently unequal and conformist, cultural and professional gaps between disciplines might be widened, and, where medical doctors are members of the teams, they tend to dominate the interaction and decision-making processes (Atwal & Caldwell, 2005; Hiscock & Pearson, 1999; Law & Boyce, 2003; Shaw et al., 2005; Wearing, 1999).

Provision of Support from a Community-Based Setting The services varied in the degree to which they were community-based. In addition to providing support from within the services’ main facilities, six provided services directly in the home (Services 3, 4, 6, 7, 8, and 10), three in child-care settings (Services, 2, 6, and 7), and five to schools and kindergartens (Services 2, 3, 6, 7, and 10). Interestingly, six stated that they provided services within the “community” (Services 1, 3, 4, 6, 7, and 10) without explaining how the community differed from the other settings mentioned. For example, Service 7 worked with children “at home, school, or in the community.” Two services provided a rationale for the provision of services within the child’s usual environments rather than within their therapy centers. Service 6 explained, “We know that children learn and develop best in an environment in which they are comfortable,” whereas Service 10 asserted that “the best possible learning is integrated into their usual routine.” The word community appeared numerous times throughout the analyzed documents and the data matrix. However, being based within the community does not make a service of the community (Walker, 1995). The use of the term community implies the existence of mutual obligation and bidirectional influence between each service and the community within which it is situated (McMillan & Chavis, 1986). Despite definitions of community emphasizing relational ties and bonds as well as geographical settings (e.g., McMillan & Chavis, 1986), the services’ use of the term tended to pertain to geographical terms, that is, as a place. However, this appropriation of a discourse of community potentially disguises political motives and economic rationalist ideals behind notions of geographic and affective bonds (Saggers, 2005). With the exception of Service 3, all the services claimed to be state-wide, yet not all explained how their services were provided to children and families residing outside the main cities in which the services were primarily or solely located. Services 4 and 8 had offices or clinics located in large regional towns, and Service 4 also provided visits to children in rural areas and linked these children and their families to local service providers. Services 6 and 10 provided outreach services to rural, regional, and remote areas within their respective states.

Shared Control between Client and Practitioner The parent(s) of the child and the entire family group were often considered to be the client in addition to the child in receipt of therapy services.

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The services stated that their therapists “liaise” (Service 2), “discuss” (Services 2 and 7), and work “collaboratively” (Services 3 and 4) in “partnership” (Services 3, 4, and 6) with the parents and families of the children receiving therapy so that the family has “choice” (Service 6) and “control” (Service 6) and can make “informed decisions” (Service 10) about the services they and their child receive. Service 2 explained this emphasis by stating that their “staff work in a multidisciplinary team. The most important partner in this team is you, the parent or care giver, because you know your child best,” and Services 6 and 10 explained that the families are the “experts” when it comes to their own needs, priorities, and well-being. In three cases (Services 3, 6, and 7), the child in receipt of services was also explicitly included in the decision-making partnership, and the remainder focused on the “family” or the “parents” without specifically focusing on the child’s role in the process. This is particularly important because children with disability and their parents have been shown to hold differing views concerning service delivery (Garth & Aroni, 2003) and this research demonstrates that the opinions of children with disability should be further explored within the therapeutic partnership. Four services (Services 3, 4, 6, and 10) stated that their emphasis on shared control and partnership was informed by family-centered practice (Hanna & Rodger, 2002; King, Teplicky, King, & Rosenbaum, 2004; Law et al., 2003). Family-centered practice was defined by Service 6 as the recognition that “families need up-to-date, accurate, and reliable information to make wellinformed decisions, work out what they need, [and] decide what they see as most important for the child at any point in time.” In this approach, families and therapists “work together in partnership and each has expertise to contribute” (Service 3), services are “developed and implemented in partnership with parents and in collaboration with other professionals” (Service 4), and the role of the professional is to provide family members with information so they can make “informed decisions” (Service 10) and “achieve what they decide are their priorities” (Service 6). By stating that they assist “children, young adults and their families achieve their full personal potential and help them become empowered to make informed choices about their lives,” Service 7 appeared to work from an empowerment model (e.g., Melnyk et al., 2004; Newman & Vidler, 2006). However, no further information was supplied, nor was there any attention to the power differential between parents and professionals that can counteract the development of working partnerships between them (Blue-Banning, Summers, Frankland, Nelson, & Beegle, 2004), the conflation of family involvement in care with family responsibility for care (Dodd et al., 2007; Shields, Pratt, & Hunter, 2006) or to research indicating that parents believe family-centered practice has more negative outcomes than do service providers (King, Kertoy, King, Law, Rosenbaum, & Hurley, 2003). The assumed expertise of parents of children with disability was also illustrated in the corporate governance of Service 6, where five of the nine board members, including the president and vice president, are parents of present or former clients of the service. Some commentators (e.g., Finkelstein, 2001; Townsend, 2003) have proposed that clients should have a critical role in service delivery and professional organizations and there is a trend more

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generally toward user-led disability services (Barnes & Mercer, 2006). The increased involvement in and control of disability services by people with disability and their families is thought to have the potential to challenge the status quo that only “abled” people can administer services to people with disability (Finkelstein, 2001).

Individualized Support, Therapy, and Intervention This indicator was mentioned to some degree or another by five services (Services 3, 4, 6, 7, and 10). The rationale for individual planning and programming was explained by Service 6 as “no two children are the same, so services are individualised, responsive, and flexible.” Service 3 outlined the difficultly of meeting individual needs within the context of funding: “The long term challenge remains to evolve towards a business model that reduces dependency on government funding and [at the same time] enhances opportunities to provide new and flexible services tailored to the perceived needs of families, rather than the bureaucratic convenience of funding programs.” Individualized support, as opposed to a “one-size-fits-all” approach to service delivery, is considered to be a key characteristic of appropriate disability approaches (Schalock, 2004; Umbarger, Stowe, & Turnbull, 2005).

Advocacy and the Politicization of Health Some services stated that an aim was “to advocate on health issues of behalf of the women and children of [state]” (Service 1) and “be regarded highly as a valued advocate to policy decision makers” (Service 7). Others were more specific about the ways they provide advocacy and rationale behind it. For example, drawing on the World Health Organization’s (WHO) International Classification of Functioning, Disability and Health (2001), and the notion that disability might result from social and environmental barriers, Service 6 might “recommend or arrange: ramps for building access, building modifications to provide accessible toilets, [and] training in communication interaction strategies to enhance communication opportunities for children.” Likewise, to better met the needs of blind and visually impaired people, Service 4 maintained an active advocacy role by developing public policy positions in various areas included outdoor dining, education and training, print standards, and safe and accessible public transport. In relation to this indicator of wellness, the services tended to participate in advocacy far more than the politicization of health and disability. Some commentators have recently argued that the “political” is often absent from social-political approaches and have proposed the development of a resistance theory of disability that is explicitly emancipatory (e.g., Gabel & Peters, 2004; Watson, McKie, Hughes, Hopkins, & Gregory, 2004).

CONCLUSION Wellness remains a largely elusive and contested term in the literature (Breen et al., in press; Kahn & Juster, 2002; Larson, 1999). Part of the explanation is

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the continuing tensions between the social-political, medical, and economic paradigms that underpin Australian health care policy and practice (Bowles, 2001). Importantly, these competing and contrasting pressures are evidenced by the ways in which the childhood health and disability organizations describe their service delivery, which helps explain the difficultly of shifting from wellness rhetoric to reality. Determining where and how wellness appeared in the Web sites, annual reports, and strategic plans of the selected childhood health and disability services was further obscured by the lack of any reference to the term wellness. That is, despite the growing use and acceptance of the term, it did not appear even at the rhetorical level in the selected documents of major childhood health and disability providers across Australia. Furthermore, while all six correlates of wellness were mentioned, at least to some degree, how each characteristic was enacted by and practiced within each by service remains unclear. This uncertainty illustrates the importance of moving beyond the rhetoric of wellness and exploring how such a concept is implemented in practice. Ultimately, the shift requires holistic and complex changes to allied health professional education and training, practice, and research, as well as funding structures and practices that determine the delivery of childhood health and disability services (Breen et al., in press). Although the services appeared to endorse at least some or all of the wellness correlates, the rhetoric may not always match the reality of service provision (Bowles, 2001; Goodgold, 2005; Hanna & Rodger, 2002; Saggers et al., 2002; Schalock, 2004; Wearing, 1999). The alignment of allied health literature on health and disability with policy and practice is integral to the improvement of health and disability services. Embedding wellness approaches into health and disability services requires holistic and complex action within allied health professional education and training, practice, and research, rather than just a change in the terminology and rhetoric used. The details of this action in each context need to be identified. The next stage in our ongoing research involves in-depth case studies of four major childhood disability service providers in Australia to determine how wellness approaches are embedded within the practices of these services and examine the factors that facilitate and impede their implementation. The proposed outcome of the research program is the development of guidelines for the practice of wellness across allied health services. Although based in Australia, the research is relevant to all contexts where the contemporary literature and current policy/practice are misaligned, providing a significant step toward the provision of childhood health and disability services that are more readily empowering and that addresses issues of client well-being, individual choice, independence, and the right to meaningful and productive lives.

NOTE This chapter was produced with financial and in-kind support from an Edith Cowan University Industry Collaboration Grant, Murdoch University, the Association for the Blind of Western Australia, Novita Children’s Services (South Australia), Queensland Health, and Therapy Focus (Western Australia). We acknowledge the

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additional members of our research team: Associate Professor Helen Wildy (Murdoch University), Associate Professor Jeannine Millsteed and Ms. Lynn Roarty (both from Edith Cowan University), Dr. Parimala Raghavendra and Ms. Sonya Murchland (both from Novita Children’s Services), Dr. Margaret Crowley and Ms. Marina Re (both from the Association for the Blind of Western Australia), Ms. Andrea Hurwood (Queensland Health), and Ms. Vicki Larkins (Therapy Focus). We thank Dr. Parimala Raghavendra and Ms. Sonya Murchland for their helpful comments and suggestions on an earlier version of this chapter.

REFERENCES Atwal, A., & Caldwell, K. (2005). Do all health and social care professionals interact equally: A study of interaction in multidisciplinary teams in the United Kingdom. Scandinavian Journal of Caring Sciences, 19, 268–273. Australian Institute of Health and Welfare. (2006). Disability updates: Children with disabilities. Bulletin no. 42. Cat. no. AUS 19. Canberra, Australia: Author. Barnes, C., & Mercer, G. (2006). Independent futures: Creating user-led disability services in a disabling society. Bristol: Policy Press. Blue-Banning, M., Summers, J. A., Frankland, H. C., Nelson, L. L., & Beegle, G. (2004). Dimensions of family and professional partnerships: Constructive guidelines for collaboration. Exceptional Children, 70, 167–184. Bowles, W. (2001). The Australian disability field—Times of change. In M. Alston & J. McKinnon (Eds.), Social work: Fields of practice (pp. 33–45). Melbourne: Oxford University Press. Breen, L. J., Green, M. J., Roarty, L., & Saggers, S. (In press). Towards embedding wellness approaches to health and disability in the policies and practices of allied health providers. Journal of Allied Health. Burgess-Limerick, T., & Burgess-Limerick, R. (1998). Conversational interviews and multiple-case research in psychology. Australian Journal of Psychology, 50, 63–70. Dodd, J., Saggers, S., & Wildy, H. (in press). Constructing the ideal family for family centered practice: Challenges for delivery. Disability and Society, 24. Finkelstein, V. (2001). Disability: A social challenge or an administrative responsibility? In J. Swain, V. Finkelstein, S. French, & M. Oliver (Eds.), Disabling barriers, enabling environments (pp. 34–43). London: Sage. Gabel, S., & Peters S. (2004). Presage or paradigm shift? Beyond the social model of disability toward resistance theories of disability. Disability and Society, 19, 585–600. Garth, B., & Aroni, R. (2003). “I value what you have to say.” Seeking the perspective of children with a disability, not just their parents. Disability and Society, 18, 561–576. Goodgold, S. (2005). Wellness promotion beliefs and practices of pediatric physical therapists. Pediatric Physical Therapy, 17, 148–157. Hanna, K., & Rodger, S. (2002). Towards family-centred practice in paediatric occupational therapy: A review of the literature on parent-therapist collaboration. Australian Occupational Therapy Journal, 49, 14–24. Hiscock, J., & Pearson, M. (1999). Looking inwards, looking outwards: Dismantling the “Berlin Wall” between health and social services? Social Policy and Administration, 33, 150–163. Jones, G. C., & Kilpatrick, A. C. (1996). Wellness theory: A discussion and application to clients with disabilities. Families in Society: Journal of Contemporary Human Services, 77, 259–267. Kahn, R. L., & Juster, F. T. (2002). Well-being: Concepts and measures. Journal of Social Issues, 58(4), 627–644.

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Trute, B., Hiebert-Murphy, D., & Levine, K. (2007). Parental appraisal of the family impact of childhood development disability: Times of sadness and times of joy. Journal of Intellectual and Developmental Disability, 32, 1–9. Umbarger, G. T., Stowe, M. J., & Turnbull, H. R. (2005). The core concepts of health policy affecting families who have children with disabilities. Journal of Disability Policy Studies, 15, 201–208. Walker, P. (1995). Community based is not community: The social geography of disability. In S. J. Taylor, R. Bogdan, & Z. M. Luftiyya (Eds.), The variety of community experience: Qualitative studies of family and community life. Baltimore, MD: Brookes. Watson, N., McKie, L., Hughes, B., Hopkins, D., & Gregory, S. (2004). (Inter) dependence, needs and care: The potential for disability and feminist theorists to develop an emancipatory model. Sociology, 38, 331–350. Wearing, M. (1999). Medical dominance and the division of labour in the health professions. In C. Grbich (Ed.), Health in Australia: Sociological concepts and issues (pp. 197–216). Sydney: Prentice Hall. World Health Organization. (1948). Preamble to the constitution of the World Health Organization. Retrieved on October 11, 2007, from www.searo.who.int/ LinkFiles/About_SEARO_const.pdf. World Health Organization. (2001). International classification of functioning, disability and health. Geneva: Author.


CHAPTER 13

Health Care, Disability, and Living with Chronic Illness: Rehabilitation and Beyond Marie A. DiCowden

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n Another Country: Navigating the Emotional Terrain of our Elders, Mary Pipher (1999) advances the concept that illness and the disabilities associated with aging are not separate and special diagnostic categories but simply mark points on a continuum of health. This concept of a health continuum holds true for all individuals of all ages. At one end of the continuum is a position of optimal health and function moving through normal functioning and periods of short-term illness. At the other end of the continuum is a position of disability and long-term functional impairment. We all age and therefore are or will experience disability at some point in our lives. We are all living at some point along this continuum of health. Thus, how we treat people with disabilities in our health care system is an important indicator of how the system will function for everyone.1 This chapter views health as a continuum through which we all pass during our lifespan. It highlights the need to look at how our current health care system functions for people with disabilities—in essence, all of us. It also goes beyond assessing the current status of the system and describes how rehabilitation and life after rehabilitation can set a model of health care that is needed by all of us. If we subscribe to this model of health and illness, then it is not surprising to find that there is a move toward a new medicine in the United States—a new medicine that treats the whole person, not just the parts that are ill. This new medicine looks beyond drugs and surgery to focus on rehabilitation and prevention and encourages people to be active participants in their own health care. The doctor–patient relationship in the new medicine emphasizes listening, comforting, and collaborating. This chapter argues that beyond this new medicine, we need to move toward a vision of new health if we are

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to address the challenges that are currently being faced by the health system. This chapter promotes basic principles that are required if health care in the United States is to begin to meet this challenge: 1. Disabling conditions that impair daily functioning in a person’s life represent but one point in the overall continuum of health. 2. Health is defined in terms of quality of life. 3. Health is not mere body mechanics or a personal, psychological state of mind. Health and healthy functioning are best viewed in the context of a person’s family, social supports, work focus, and environment. Health is culturally based and, as such, any interventions to promote health and healthy functioning must be responsive to an individual’s culture and belief system. This chapter reviews a model of health care that responds to these principles.

THE CHALLENGE OF OUR CURRENT HEALTH CARE SYSTEM Health care reform has been debated extensively at multiple levels (e.g., consumer-driven health savings accounts, revolutionary information technology approaches to health care reform, and payment for performance). However, these issues are just a microcosm of the larger issues that need to be addressed—cost-effectiveness, efficiency and quality, and access to humane care. In the 2008 presidential race, health care issues have become one of the major topics of debate, behind only the economy and the Iraq war (Pew Research Center for the People and the Press, 2008). Long-term impairments of health pose the biggest challenge to our present health care system. Modern scientists discovered antibiotics and miracle drugs that, for all practical purposes, eliminated the scourges of the previous centuries (e.g., smallpox, polio, tuberculosis). Modern medicine has brought major breakthroughs that allow for critical surgical intervention (e.g., reattachment of limbs, heart and kidney transplants). However, it is the longterm after-effects of injury, illnesses, and pain that remain the challenge to our health care system in the 21st century. Given the way in which health care delivery has been structured in the United States through private insurance policies and private administration of government programs, prior health care debates have primarily centered on reducing the cost of health care through rationing benefits and access to services. This economic approach makes sense if health care is considered take a commodity that is sold for profit. However, following that logic, health care delivery is not really the issue—profits become the driving force. Therein lies the fallacy. The product of health care should be good health. If a person is healthy, that in itself limits the need for health care and drives down the cost of health care delivery. People are beginning to pursue a different set of values, cost notwithstanding. These values include a focus on wellness and prevention of disease

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to promote a higher quality of life, enlarging the understanding of mind/ body interactions in dealing with issues of health and illness, and focusing on connections in their social support system (American Psychological Association [APA], 1995; Berkman, 1995; Blount et al., 2007; Cohen, Underwood, & Gottlieb, 2000; Jarrett, Yee, & Banks, 2007; Kaslow et al., 2007; Levant & Heldring, 2007; Ray, 2004; Stamm, Lambert, Piland, & Speck, 2007). The American2 public recognizes that there is a connection between emotional and physical health (APA, 1995). The American public was also found to be using more complementary and alternative medicines (CAMs) such as acupuncture, herbals, and massage. Clearly, the American public has a broader definition of health care than that employed by health care delivery system. The public is pursuing this larger definition regardless of cost. In 1993, $13.7 billion a year was spent, out of pocket, on complementary health care (Eisenberg et al., 1993). In 1998, this had increased to an out-of-pocket expenditure of $21 billion a year (Eisenberg et al., 1998). A more recent study (Tindle & Eisenberg, 2005) compared the numbers of Americans using complementary and alternative therapies in 2002 and 1997. Reported results indicate that there is a stable number of Americans—more than one in three—using one or more forms of CAM. The greatest increases were in use of over-the-counter herbal medicines, which increased by 50 percent, and the practice of yoga, which increased by 40 percent. Despite this level of usage, up to 70 percent of patients do not communicate with their primary physician about complementary/alternative practices. In general, there is a disconnection in the current health care delivery system between mental/behavioral care and physical care. Clinically, several models of health care delivery have evolved to attempt to resolve this gap in care. First, in large settings, (e.g., through the Veterans Administration or through large health maintenance organizations like Kaiser Permanente), team-based multidisciplinary and interdisciplinary care is generally provided. Second, spurred by insurance models, there is also a focus on provision of most services by a primary care physician, who acts as gatekeeper to other service providers or collaborates with a case manger to integrate mental and physical health services for a patient. Finally, in cases where severe mental illness is the primary issue, provision of on-site primary medical care in such places as state hospitals has also been attempted (Marder et al., 2004). For a variety of reasons, primarily economic, administrative, and political, none of these models of health care delivery have been consistently implemented across the health care system.

SPEAKING FOR THE AMERICAN PEOPLE In 2003 Congress passed Public Law 108-173 to create the Citizens’ Health Care Working Group (CHCWG). The mission of the CHCWG was to engage the American people in public forum discussions to determine what the public wanted in health care and how to address the current health care crisis. Charged to develop recommendations for the president and Congress,

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this committee presented its report, Health Care That Works for All Americans (2006). This report begins by reflecting on the American values that underlie health care delivery as expressed in the various town meetings. Rather than an economic commodity, health care was viewed by the public as a “shared social responsibility” and fundamental to the well-being of all Americans regardless of “health status, working status, age, income or other categorical factors that might otherwise affect health insurance status.” There was general consensus that Americans wanted a health care system “where everyone participates . . . with benefits that are sufficiently comprehensive to ensure access to appropriate, high-quality care without endangering individual or family financial security” (p. 4). Although stewardship of societal resources was considered important, a sense of urgency and a desire for change to be implemented immediately was overwhelming. Recommendations that reflect these values were made for a five-year transition plan to improve the American health care system. The overall goal and the first recommendation is to develop a public policy that all Americans have access to affordable and appropriate health care services by 2012. Three areas of concern were underscored and five recommendations were made. • Immediate Action Needed to Improve Security and Access 1. Recognizing both the financial burden of health care and the difficulty in navigating the health care delivery system to obtain needed services, the CHCWG recommended that immediate action be taken to change the personal financial burden of health care security and increase the access to health care; 2. that there be a guarantee for financial protection against very high health care costs; and 3. that at the same time local innovative, integrated community health networks be developed. “Fix the delivery system first” was a theme that developed throughout the public forums. • Define Core Benefits and Services for All Americans 4. The Working Group recommends that a nonpartisan public/private group be established by law to define a core set of health benefits and update these benefits on an ongoing basis. Health is to be defined to include medical, mental, and dental health. Evidence-based science and expert consensus regarding the effectiveness of treatments should guide the services that are provided with an awareness that advances in research and knowledge will impact the treatments covered. Health care services should focus on “wellness, prevention, primary care, acute care, prescription drugs, patient education, and the treatment and management of health problems provided across a full range of inpatient and outpatient settings.” These services should be available across the life span. • Build a Better Health Care System To “fix the broken health care system,” the Working Group recommended that federally funded programs should: 5. Provide integrated health care clinically and administratively. This recommendation focuses on the clinical provision of evidence-based best practices as well as on the need for integrating health information and


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electronic recordkeeping. A better health care system is also defined as one that promotes health and disease prevention, emphasizes patient– provider communications, and patient-centered care and research. The CHCWG struggled with how to pay for these recommendations. It stopped short of recommending that these policies be financed by a national health insurance policy. However, participants in the public forums favored a national health program by a margin of three to one (Physicians for a National Health Plan, 2006). The working group did recommend that some proposed actions be financed by reallocating existing state and federal funds. It also recognized that long-term savings could result from implementation of these recommendations, although immediate actions could result in a financial shortfall to retool and integrate the health care system. Throughout the public discussions, the working group indicates that a majority of the American people believe there are sufficient resources in the system to provide the type of care and access that is recommended. They also indicate that if new revenue sources for health care financing are needed, that a majority of the public is “willing to pay more to ensure that all Americans are covered” (p. 31). National polls have also confirmed this opinion. The most frequent option presented to raise new revenues is consideration of some form of sliding scale income or payroll tax that is specifically budgeted for universal health care. Financial reorientation of the current health care system has been a concern with regard to the disrupting effects on the economy if private insurance is replaced with universal health care. This has been a highly significant debate in California where legislation for universal coverage in that state was recently proposed. However, the economic toll of not making changes is also inevitable, in addition to the human toll that the current health care system now exacts. In light of the values expressed by the American people that health care is not an economic commodity but a shared social responsibility, the financial allocation of current health funds by private payers from services to administration must be noted. A landmark study of the California health care system indicates that overall billing and insurance related administrative costs account for 21 percent of privately insured spending in that state (Kahn, Kronick, Kreger, & Gans, 2005). A substantial savings may be achieved by integrating the fractured payment system into a single payer system. Extrapolating from this California study, Kahn (2006) estimated the amount the United States would save each year on paperwork if it adopted single-payer health care administration would be $161 billion.

PUTTING WORDS INTO ACTION One community-based model that addresses a majority of the CHCWG recommendations is the Biscayne Health Care Community™ (HCC) model that has been in existence for close to 20 years (DiCowden, 2003). The model provides a full continuum of integrative health care services. By creating a community within the community at large, it combines individual treatments and privacy with group and social supports. Core and specialty teams may come into contact with the patient in multiple ways within the HCC milieu.

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Silos of care are broken down. This community also provides a crucial element in healing that many people lack today—a connectedness to a caring, social support network. People—patients and staff—feel they are not in this alone. The model is differentiated by several features, including its philosophy, its interdisciplinary staffing, its physical environment, and its continuum of integrated services.

Philosophy The HCC model is a frontline, community-based program that stands midway on the health care delivery continuum between hospitals and individual practitioners. It is designed to follow a patient within the context of the family and community. Programs are available for adults, children, and elders that span the continuum of care from wellness through primary care to rehabilitation. The focus is on health, not illness. However, in times of illness or injury, the goal is to provide a seamless flow of services and information to expedite the patient’s healing. Following patients closely in a community context, HCC practitioners can provide integrated care or quickly triage a patient to a specialist or hospital, if needed. The HCC also serves as a central community-based program that coordinates and receives updated information from hospitals and specialists regarding the patient’s care needs and helps monitor services so they are not duplicated or in conflict with other services. The underlying philosophy is to be humanly responsive to the individual who is undergoing a health challenge in context of their larger identity within the family and community— and to be a system designed to meet human needs on a human scale.

Interdisciplinary Staffing A core clinical team with a set of basic skill competencies provides services across program lines. This includes Western medicine, psychology, social work, and Chinese medicine. Specialty team members are added as required by a particular program, for example, physical, occupational, and speech therapies, art therapy, teachers, and so on. Team chart rounds are a weekly occurrence on all service programs. It is the glue that holds the clinical integration of care together. Patients are discussed, and a care plan with specific time lines is reviewed to keep the team focused on the main goals of clinical care for a particular patient. This allows for true integration of services rather than each discipline working independently on their own goals and delivering services in a separate silo of care. The weekly team meetings are essential to breaking open the more limited conceptualizations that can occur in the silos of care. They can provide a fertile ground for discussion that will grow new conceptualizations and can contribute to better integrated care for a patient by all team members.

Physical Environment A highly important aspect of this model is that its focus is on health and quality of daily living—which includes an emphasis on beauty and the healing


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power of place. The physical structure in which the Biscayne HCC is housed emphasizes wellness and attractive surroundings. It provides a marked departure from traditional medical office, hospital, rehabilitation, and clinic settings. There are numerous group and community rooms, which look like rooms in a home, in addition to a gym, treatment rooms, and practitioner offices. There is an emphasis on soft colors, beautiful furniture, and lighting throughout. Natural light, from floor to ceiling windows, clerestory windows, and skylights are used extensively. Incandescent and halogen lighting are used whenever possible. Carefully selected music, which can be individually controlled at local targeted treatment areas, is also integral to healing within the HCC space. Outside landscaping provides blooming plants at alternating times of the year, a meditation garden and fountains, with the calming sound of running water, and visibility of the outdoors in many places within the building. An important element for staff and patients in this particular model for health care delivery is a large, round room known as the Meditation Room. This room is one and one-half stories high and 120 feet in circumference. It is a place for community gatherings, staff meetings, an auditorium for community outreach programs, yoga, tai chi and body work, prevention workshop programs, and meditation.

An Integrated Continuum of Services In reviewing the wheel of caring that is the HCC model, there are three core service areas—wellness and health promotion, integrative primary care, and rehabilitation. The core service areas are supported by ancillary programs that are not normally found within the current health care setting.

Wellness, Prevention, and Health Promotion The primary goal of the program is to expand the public’s understanding of health and how to be an active participant in creating a healthy quality of life. The wellness, prevention, and health promotion service area is made up of both clinical and educational programs. The clinical programs extend the continuum of services provided in the other two major service areas—rehabilitation and integrative primary care (e.g., stress management counseling, acupuncture for wellness, biofeedback or massage therapy for relaxation, supervised exercise programs after formal rehabilitation has ended, or ongoing support groups for social engagement). Patients are encouraged to maintain and promote their health. Education programs are provided through classes and workshops. Yoga, tai chi, and meditation classes are held regularly. Programs include combined presentations with university hospitals (e.g., dealing with traditional and complementary approaches to cancer, or programs on stress management, weight loss, nutrition, smoking cessation, or mindfulness approaches to health). One particular program run by the Florida Council on Spirituality, Medicine and Healing consisting of physicians, other health care professionals, and local leaders of various spiritual traditions. The council holds public information programs that examine different questions relating to overlapping

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boundaries among spiritual belief systems and the process of healing. Some topics have included the role of love in healing and near-death experiences. Each public forum is followed by questions from the audience and closes with a different spiritual group providing an interfaith meditation or spiritual ritual. These have ranged from Buddhist sand mandala constructions to candlelight meditations held on Christmas and Hanukah. The sessions honor the spiritual belief system of each person and the innate factors that produce healing. Based on the concept that the focus of health care should be on building health, HCC wellness, prevention, and health promotion programs focus on an individual’s beliefs and behavioral factors that contribute to health or illness. The interaction between the individual’s mind and body and pathogens in the environment are seen to be the key elements in whether an individual becomes sick. The belief system of the patient is acknowledged as being critically important. The emphasis is on education and how the patient can be encouraged to become an active collaborator in treatment and the healing process. This approach echoes the health care model of the future (Chiong, 2001; Pincus, 2003; Ray, 2004). Research is beginning to focus on nonmedical factors that influence a person in resisting illness and living longer (Ray, 2004). Four interactive information systems in the human being have been cited as responsible for health as governed by the psychoneuroimmunological system: the brain, the endocrine system, the nervous system, and the immune system (Maier, Watkins, & Fleshner, 1994). Ray (2004) defined the brain as the first line of defense against illness and described the mind as the emergent functioning of the brain. Because the body reacts to the mind’s beliefs as a product of the brain, it is irrelevant whether the belief is true. The belief system sets a series of physiological responses into play. In that sense “belief becomes biology” (Lipton, 2005). Ray (2004) pointed out that stress is defined as an experience when an individual’s coping skills are inadequate to meet environmental demands. However, the coping skills that people believe they have to bring to bear on the situation are most important. He also cited inner resources that include unconscious assumptions and predictions, social support, and spiritual beliefs as the prime factors in dealing with stress and impacting a person’s ability to maintain a healthy state. In providing educational and experiential opportunities to address beliefs and develop a social support system through wellness promotion workshops, the HCC, in addition to providing clinical services for prevention of illness, makes one of its greatest contributions to a changed health care paradigm.

Ancillary Programs Figure 13.1 provides a listing of the ancillary programs that contribute to the basic service areas of the HCC. The Biscayne Academy provides support for pediatric rehabilitation programs by providing special education on site and integrated with pediatric health care delivery. Services are provided for children from age 6 through 21 with varying disabilities. Data indicates that children that receive services provided in the context of an expanded definition of health care, where daily learning opportunities are integrated into


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Figure 13.1. The HealthCare Community Model.

health services delivery, achieve better results in all areas—physical, cognitive, emotional, behavioral, and social (DiCowden, DeSantis, & DiCowden, 2007). Research and training is provided both for specific disciplines and for integrative and transdisciplinary programs. In addition to using more traditional methods of field research, the primary research focus of the HCC is to implement the International Classification of Functioning for adults and children in assessing the efficacy of clinical programs. This reflects the emphasis on increased functioning as the most important aspect in health care, as opposed to diagnosis. Training for multiple disciplines is achieved through contracts for clinical training with different universities and medical schools. Each professional student in training receives supervision from a qualified, licensed clinician in his or her field. In addition, they engage in didactic and experiential training programs with multiple disciplines once a week. Volunteers from the community at large as well as from rehabilitation patients who have completed their programs yet are unable to return to work in the community are engaged in both the volunteer program and protected work sessions. Peer mentoring, assistance in daily activities in the center (e.g., helping the physical therapy department, working in the pet therapy program), and production of items to sell that convey the meaning of an expanded definition of health are all part of both the volunteer and protected

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work environment programs. This enables a greater interface with the larger community as well as allows patients who have completed programs to give back to the HCC. A community outreach program also enables the HCC model to plant ideas in the community at large about the changing model of health care. This is done by sending teams of clinicians into the community. Examples are teams from the elders program that have set up expanded mind/body programs in nursing homes and assisted living centers. Community outreach has also been fostered through providing wellness teams to local businesses and schools on a time-limited basis to initiate stress management and changes in curriculum. In addition, the HCC is a place that welcomes certain groups to use the facility to create a greater connection to the expanded definition of health. The local Kiwanis Club, a service organization that emphasizes “Children as Priority One,” meets at the facility and regularly engages in fundraising activities to support special programs. One such program led to a grant form Kiwanis International for Kiwanis Kids, which was a service for early identification of problem areas in development for parents of young children, aged birth through to six years old. A 501(c)3 nonprofit public sector program known as the Biscayne Foundation also raises monies for research, education, and services needed by those who cannot afford care under the current U.S. health care system. Among other activities, the Biscayne Foundation has been able to engage in cutting-edge research that looks at the impact of the arts in healing, provide integrative summer camps for children with disabilities, and develop therapeutic programs for children from underserved, immigrant families.

Integrative Primary Care The newest service area to complete the continuum of care in the Biscayne HCC model is integrative primary care. Services are provided by two allopathic internists, one of whom is also board certified as a cardiologist; a licensed Chinese medicine practitioner, who also holds a degree in naturopathy; and a psychologist with specialty in behavioral medicine and rehabilitation. Patients are referred and treated in the context of three programs: (a) integrative primary care that supplements rehabilitation programs; (b) traditional allopathic patients who are identified as in need of other services and follow-up; and (c) integrative health evaluations and follow-up that provide overall assessment to maintain health or assist patients with complex issues (e.g., making decisions regarding treatment). Integrative primary care that supplements rehabilitation programs adds great benefit to patients who are undergoing rehabilitation at the Biscayne Institutes of Health and Living. Many rehabilitation patients have complex medical problems with symptomatology and medication changes that are often unreported to the rehabilitation specialist programs. On-site coordination of primary care allows early detection and communication of health concerns that may destabilize the patient medically and interfere with rehabilitation. Communication among both primary care and rehabilitation providers makes


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for a more seamless and coordinated view of patient care in a more timely manner that can often avert medical complications and deterioration. Conversely, many rehabilitation patients with complex issues (e.g., spinal cord injury) often have difficulty finding primary care practitioners who understand the complexity and fragility of their rehabilitation issues. Having primary care on site with rehabilitation that is coordinated in team meetings provides a greater sense of confidence in addressing medical issues for both the patient and the medical provider. Allopathic physicians at Biscayne Institutes maintain an ongoing traditional primary care practice for patients with a wide variety of problems. Given their integrative orientation, however, they are focused on addressing issues beyond the physical. Rather than making referrals for emotional or complementary alternative services, physicians have the capability for an oncall integrative team to meet the patient at the time of the patient’s regular office visit. This makes for a less anxious and smoother transition for a patient to receive other needed services. It also increases the likelihood of a patient’s following up on referrals for future care. Integrative health evaluations and follow-up are provided to the community with the same protocol but two different goals. One goal is to provide a comprehensive health evaluation for check-up, early identification of any health problems, and to recommend health maintenance behaviors and services, if needed. The other goal is to assist patients who have complex medical symptomatology and need assistance in developing an overall concept of their health issues and making decisions regarding treatment. Patients are first seen for an interdisciplinary intake assessment that coordinates all medical, emotional, and social history. Information is gleaned about the patient’s role in the family, community, and supports as well as spiritual or nonspiritual beliefs. This interdisciplinary history is then provided to each of the team members, who do an independent interview to explore specific details, if needed, and perform a physical. At the end of the interdisciplinary evaluation, the team meets to coordinate findings and produce and integrative report with recommendations for follow-up as needed and in the order of importance as agreed on by the team. The patient is then seen to review the report and have an opportunity to ask questions and is provided with a copy of the comprehensive written evaluation. If the patient needs referrals to specialists, that is made at the time of feedback. If the patient wishes to receive follow-up services at the HCC to address illness/injury or maintain health, those appointments are also made at that time. Providing such a service allows a patient to view personal health and any health problems in a more global manner. It allows an integrated understanding of the self physically, emotionally, socially, and spiritually. This personal knowledge, and awareness of available options to maintain health, empowers a patient to become an active participant in his or her own health care—making informed choices about how to proceed, if medical treatments are necessary. It helps a patient navigate the complicated and fragmented health delivery system that currently often treats the “part” that is ill and loses sight of the whole person.

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Rehabilitation The HCC has both adult and pediatric rehabilitation programs. The adult program has five specialty areas and the pediatric program has two. Both areas carry both state and national rehabilitation accreditation. The amount of time a person stays at the HCC facility varies. Patients may spend multiple days a week or only several hours a day. The amount of time depends on the patient’s specific assigned services and his or her choice of involvement in community events that take place through the Wellness and Health Promotion service area on a regular basis (e.g., meditation).

Adult Traumatic Brain Injury and Neurology Service Biscayne has a premier nationally and state-accredited program for rehabilitation of traumatic brain injury. Patients are seen for postacute rehabilitation and followed long-term in the community. Services are provided in both individual and group formats. Cognitive retraining to stimulate brain recovery in an organized, sequential manner is provided through a specified series of activities that can be individualized as needed. Biofeedback, physical, occupational, and speech therapies are provided. Services often work in a transdisciplinary manner so that they can be administered simultaneously. In Florida, where Biscayne Institutes is located, Chinese medicine practitioners are licensed as primary care providers. Consequently, acupuncture and herbal remedies to facilitate the healing process are easily available to patients. Individual therapy and behavioral medicine interventions are also provided along with family and group therapy. Group work is essential to address coping and social skills along with the more traditional concerns of depression and anxiety. Patients with other neurological disorders receive individual and/or group rehabilitation from the same disciplines as the traumatic brain injury services provide. A wide variety of people with differing diagnoses are seen (e.g., stroke, Arnold Chiari syndrome, multiple sclerosis, brain tumors). In each case, an evaluation is performed and an interdisciplinary care plan developed with the patient and family as appropriate; weekly team rounds held address both progress and set new goals.

Adult Outpatient Medical Rehabilitation Patients seen in the adult outpatient medical rehabilitation services struggle with a wide variety of health challenges. These include such diagnoses as amputation, chronic pain, neuropathy, orthopedic injuries, secondary effects of diabetes, spinal cord injury, and so on. All patients receive the traditional Western services of physical, occupational, and speech therapies as needed. However, they can also avail themselves of biofeedback, acupuncture, and herbs integrated with their allopathic physician’s treatment. Individual and family therapies are provided to address issues of change and adjustment as well as pain management and more emotional concerns related to depression and anxiety. As needed, specialty groups are formed to provide patient support. These groups are organized around specific diagnostic categories (e.g., pain


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management, spinal cord injury). The groups provide coping and emotional support as well as educational information.

Elders Program With the growing need to address issues of elders in the community, particularly with regard to issues of aging and cognitive and physical capacities, patients with dementia and Alzheimer’s disease are seen in a separate program. This program is geared to two levels of functioning: (a) those individuals who are at some level of independent functioning within the community, and (b) those individuals who are in later stages and, even with nursing assistance, have problems with initiation of mental or social activities. Both groups are provided with sensory stimulation and cognitive retraining appropriate to their level and lifestyle. But the goals are different. For elders in Level 1, the goal is to prevent deterioration and promote function. For those in Level II, the focus is on transcending from past functioning into acceptance of a new way of being, functioning independently as much as possible within a structure. Group therapy is also provided to address issues of loneliness and isolation as well as frustration with the changes associated with aging. Traditional physical, occupational, and speech therapies also are provided to maintain physical functioning; in some cases, elders choose to participate in Chinese medicine. Therapeutic massage is helpful to this group of people, who often suffer from lack of human tactile contact in their daily lives, increasing their sense of isolation. Therapeutic use of the arts (both visual and musical) provide additional symbolism and means of communication and stimulation for elders. The rehabilitation program for adult individuals with developmental disabilities provides a three day a week program of cognitive retraining and problem solving designed specifically to address independent functioning in the community. Group therapy to provide support and assist in developing coping and social skills is also provided. This consistent structure allows the person to develop to the highest level possible and takes a prevention-oriented approach to maintaining healthy and adaptive functioning physically, mentally, and emotionally. Individual and family therapy is also provided as needed and as requested. The traditional and nontraditional therapies (e.g., physiotherapy, occupational therapy, speech therapy, and Chinese medicine), are used as needed as components of the individual’s program.

Adult Dual Diagnosis Rehabilitation The Biscayne HCC admissions criteria does not provide for patients to enter the community who are actively using drugs or alcohol. These patients first need specialty care for detoxification; however, patients with an alcohol or drug addiction who also need rehabilitation can be seen providing they are medically cleared and are living in a halfway house that addresses addiction problems or they are actively participating in an addictions program (e.g., Alcoholics Anonymous or Narcotics Anonymous). In addition to the specific services provided (e.g., brain injury, neurological, or outpatient medical rehabilitation), patients are provided a protocol

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that includes individual therapy and group therapy with others struggling with addictions. Acupuncture protocols specifically developed to address addictions are also provided. Permission for the Biscayne team to coordinate with community-at-large supports (e.g., family or halfway house staff) is often helpful to the patient and in some cases may be considered mandatory for treatment.

Pediatric Traumatic Brain Injury Service Children and adolescents through age 21 with traumatic brain injury are provided a state and nationally accredited program that has been termed by accreditation reviewers as “the way pediatric rehabilitation should be provided across the country.” The developmental stage of the child cognitively, emotionally, and physically is endemic to the type of rehabilitation program that is provided. Children are seen for postacute rehabilitation. They are followed up in the long term to assist in stimulating the brain through immediate recovery and to provide support so that the child may attain the highest level of functioning possible as later age-stage developmental tasks emerge. Individualized programs of cognitive retraining, group programs to address stage appropriate coping and social skills and family therapy for education and support are critical services that are provided. Special education support, physical, occupational, and speech therapies are also integrated. Services are provided as the family desires either after school, if the child returns to a public school, or in the context of the Biscayne Academy. The Biscayne Academy is an ancillary program that provides significant special education services integrated into the health care program. Rather than a “school” that is added on to services provided, staff are trained to provide educational programs as well as serve in the role as behavioral assistants. This is discussed further in the section describing ancillary programs. The Biscayne HCC also provides a unique summer rehabilitation program that services postacute brain injury patients and long-term follow-up for children with brain injury as well as varying disabilities. The program is presented as a summer camp and is organized around a particular theme. All services use this theme as the frame for interventions, including cognitive, emotional, and physical care. Themes are always pertinent to current childhood culture (e.g., superheroes, Back to the Future), and are seen as fun rather than rehabilitation. In addition, the multiple presentations of material via all the different disciplines allow the child to have repetitive stimulation through various modalities of learning.

Pediatric Outpatient Medical Rehabilitation Children and adolescents through age 21 are also seen for a wide variety of problems in a nationally accredited program. Diagnoses include autism, cerebral palsy, learning disorders, hyperactivity, visual or hearing impairments, and mental retardation. No diagnosis excludes a child. Evaluation for admission is done on a case-by-case basis to determine if the child or adolescent can be helped within the community model, even if he or she may require one-on-one attendance throughout treatment by an aide in addition to


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the service provider. Pediatric patients that are either ventilator-dependent, medically unstable, or determined to have severe behavioral problems that are excessively disruptive to the ongoing mission of the agency (e.g., violent, florid psychosis) are referred to more specialized care programs. Individual, family, and group therapies are integrated with special education, physical, occupational, and speech services. The child may be seen in an after-school program if they attend public school. However, if the child is placed in the academy program, they are provided treatments integrated with their special education. When the child goes home at 3 p.m., his or her schooling and rehabilitation services are completed. They do not have to be bused or taken by parents for additional services. This allows the child a more normalized experience and conserves family energy and family time.

Accreditation Although Biscayne rehabilitation programs are provided in an expanded concept of health care delivery, the rehabilitation services maintain all standards and accreditations for the highest recognition offered to rehabilitation facilities. Biscayne Rehabilitation is a federally designated Comprehensive Outpatient Rehabilitation Facility. It holds accreditation by the Commission on Accreditation of Rehabilitation Facilities as both an Adult and Pediatric Brain Injury Program and an Adult and Pediatric Outpatient Medical Rehabilitation program. In Florida, where Medicaid services are administered through the state, Biscayne Institutes’ HCC model holds a Medicaid waiver as a private facility to provide needed health care to an underprivileged population. Biscayne Institutes is also a state-designated provider by Florida’s Brain and Spinal Cord Injury Council, meeting the accreditation standards for both adults and children.

GROWING HCC The Biscayne HCC model is a working model that has developed over the past two decades and reflects many of the current recommendations of the CHCWG. It provides efficacious health care on a broad continuum of services from rehabilitation through primary care to wellness and prevention services to the local community. Core services emphasize health and wellness and include physical and mental health care as well as complementary alternative medicine integrated into the existing system. These services are provided to patients with a widely varying ability to pay and in some cases for free. Electronic records integrate all information of the HCC and the coordinated clinical programs serve as the basis of a local network to quickly refer patients to specialists or hospitals as needed. The HCC also stands as the integrated receiving agent for the patient and patient information when specialty or hospital care is given. The question arises as to how exportable this model is to other locations in the United States, and can it be replicated? Given that the larger definition of health and basic service areas in the HCC model are universal in addressing

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human needs, the answer lies in the fact that currently this model continues to exist—and grow year after year—despite the current climate of fragmented funding sources that require a patchwork approach to budget management. As it continues to grow, it is responsive to the needs of the local community. Using the basic definition of service areas, HCC can be adapted to other locales. The CHCWG advocates that federally qualified health centers (FQHCs) and community mental health centers (CMHCs) be examined for feasibility of integrating and expanding local health networks. This is one framework to consider the possibility of change. However, it assumes the FQHCs and CMHCs are reworked on the HCC prototype to include a combined emphasis on health and ancillary programs that expand the definition of health. Another method of growing HCC is for the federal government to contract demonstration projects as it has done in the primary care focus of “medical homes.” Such HCC demonstration projects, however, would be more far-reaching and encompass the full continuum of health care delivery. Such projects could be established in several major metropolitan areas as well as in a number of rural areas. Funding through prospective payment, as has been done with elder care in assistive living or inpatient rehabilitation, would provide a funding mechanism with accountability while the focus on demonstration projects can be gathering data on efficiency and effectiveness. A third mechanism for growing HCC can be for the government to provide personal financial incentives for health care professionals and administrators to create and maintain nonprofit integrative programs that can demonstrate efficacy across a continuum of care. Such an approach can be included in legislation, such as H.R. 676. Another possibility is for nongovernmental organizations to stimulate development of HCC through grant funds to local providers and agencies and encourage private/public partnerships. In expanding and exporting the HCC model, it is critical that local HCCs integrate basic service programs with specific local community needs. Doherty and Mendenhall (2006) indicate the importance of the involvement of local citizens if a sustainable community health initiative is to succeed. “Local communities must retrieve their own historical, cultural, and religious traditions of health and healing and bring these into dialogue with contemporary medical systems.” This initiative must be collaborative, not hierarchical. Individuals and families must experience the relevance of the HCC to their lives and see themselves as active co-producers of their own health. An HCC model would provide such a forum to achieve the basic needs and honor the traditional values of Indigenous people around the world. Creating a means to be locally responsive, eliminate health disparities, and cost-effectively promote function and quality of life in populations as diverse as the community in Miami or the Maniilaq community in Alaska is the overarching aim and requires a robust model. The HCC contains the elements for such a vibrant mechanism. We are intricately interwoven in our connection to one another through the global village in which we live. Yet isolation and loneliness abound in daily life and in the delivery of our health care services. Dean Ornish (1998), well known for his research and lifestyle-changing work in cardiovascular


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disease, has stated that people who are isolated and feel lonely have three to five times the rate of premature death and disease compared to those who have a sense of community. We are creatures of community. If we intend to heal ourselves and our untenable health care system in the United States, we need to see our health in the bigger picture of family, community, and as a shared social responsibility—a value enunciated by the CHCWG. If we intend to change our health system and truly meet the needs of ourselves, our families, and our friends; if we intend to honor the integration of body, mind, and spirit in a quality and cost-effective way, then we can. In The Life We Are Given, Leonard and Murphy (1995) wrote, “Ultimately human intentionality is the most powerful evolutionary force on this planet” (p. 61). Where we choose to place our conscious intention has the potential to make major changes in the national policies that effect health care in this country. It has the potential to change how we meet the needs of those who seek and those who provide health care. It ultimately has the potential to make major changes in the lives of our patients, our friends, our families, and ourselves.

NOTES 1. Ray Seltser, a well-known and retired epidemiologist, used the analogy of the canary in the coal mines. When there was a question of whether there was enough oxygen for the miners to survive, a canary was released into the mine. If the canary survived, it was safe for the miners to go in. In the context of the health system, the capacity to address the needs of the most vulnerable populations should indicate that the system will be able to meet the needs of all people. 2. The term American as used in this chapter refers to citizens of the United States.

REFERENCES American Psychological Association. (1995). Public perceptions of the value of psychological services. Washington, DC: Author. Berkman, L. F. (1995). The role of social relations in health promotion. Psychosomatic Medicine, 47, 245–254. Blount, A., Schoenbaum, M., Kathol, R., Rollman, B. L., Thomas, M., O’Donohue, W., et al. (2007). The economics of behavioral health services in medical settings: A summary of the evidence. Professional Psychology: Research and Practice, 38, 290–297. Chiong, W. (2001). Diagnosing and defining disease. Journal of the American Medical Association, 285, 89–90. Citizens Health Care Working Group. (2006). Health care that works for all Americans. Report to the President. Retrieved November 26, 2006, from www .citizenshealthcare.gov. Cohen, S., Underwood, L. G., & Gottlieb, B. H. (Eds.). (2000). Social support measurement and intervention: A guide for health and social scientists. New York: Oxford University Press. DiCowden, M. (2003). The call of the wild woman: Models of healing. In M. E. Banks & E. Kaschak (Eds.), Women with visible and invisible disabilities:

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Multiple intersections, multiple issues, multiple therapies (pp. 297–310). New York: Haworth. DiCowden, M., DeSantis, M. L., & DiCowden, T. H. (2007). Integrative healthcare and education for children in humanizing health care (volume 1). In M. DiCowden (Ed.), Whole person health care. Westport, CT: Praeger. Doherty, W., & Mendenhall, T. (2006). Citizen health care: A model for engaging patients, families and communities as co-producers of health. Families, Systems and Health, 24, 251–263. Eisenberg, D. M., Davis, R. B., Ettner, S. L., Appel, S., Wilkey, S., Van Rompay, M., et al. (1998). Trends in alternative medicine use in the US, 1990–1997: Results of a follow-up national survey. Journal of the American Medical Association, 18, 1569–1575. Eisenberg, D., Kessler, R. C., Foster, C., Norlock, F., Collins, D., & Delbanco, T. (1993). Unconventional medicine in the US. New England Journal of Medicine, 328, 246–252. Jarrett, E. M., Yee, B. W. K., & Banks, M. E. (2007). Benefits of comprehensive health care for improving health outcomes in women. Professional Psychology: Research and Practice, 38, 305–313. Kahn, J. (2006). Facts. Harper’s Index, Harper’s, January. Retrieved June 19, 2008, from harpers.org/subjects/HealthCare. Kahn, J., Kronick, R., Kreger, M., & Gans, D. (2004). The cost of health insurance administration in California: Estimates for insurers, physicians and hospitals. Health Affairs, 24, 1629. Kaslow, N. J., Bollini, A. M., Druss, B., Glueckauf, R. L., Goldfrank, L. R., Kelleher, K. J., et al. (2007). Health care for the whole person: Research update. Professional Psychology: Research and Practice, 38, 278–289. Leonard, G., & Murphy, M. (1995). The life we are given. New York: Jeremy P. Archer/ Putnam. Levant, R. F., & Heldring, M. (2007). Commentary: Health care for the whole person. Professional Psychology: Research and Practice, 38, 276–277. Lipton, B. (2005). The biology of belief: unleashing the power of consciousness, matter and miracles. Santa Rosa, CA: Mountain of Love/Elite Books. Maier, S., Watkins, L., & Fleshner, M. (1994). Psychoneuroimmunology: The interface between brain, behavior and immunity. American Psychologist, 49, 1004– 1017. Marder, S., Essock, S., Miller, A., Buchanan, R., Casey, D., Davis, J., et al. (2004). Physical health monitoring of patients with schizophrenia. American Journal of Psychiatry, 161, 1334–1349. Ornish, D. (1998). Love and survival: The scientific basis for the healing power of intimacy. New York: Harper Collins. Pew Research Center for the People and the Press. (2008). An even more partisan agenda for 2008. Survey reports. Retrieved June 21, 2008, from people-press .org/report/388/an-even-more-partisan-agenda-for-2008. Physicians for a National Health Plan. (2006). Our mission: Single payer national health insurance. Retrieved November 12, 2006, from www.pnhp.org. Pincus, H. (2003). The future of behavioral health and primary care: Drowning in the mainstream or left on the bank? Psychosomatics, 44, 1–11. Pipher, M. (1999). Another country: Navigating the emotional terrain of our elders. New York: Riverhead Books. Ray, O. (2004). How the mind hurts and heals the body. American Psychologist, 59, 29–40.


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Stamm, B. H., Lambert, D., Piland, N. F., & Speck, N. C. (2007). A rural perspective on health care for the whole person. Professional Psychology: Research and Practice, 38, 298–304. Tindle, H., & Eisenberg, D. (2005). One-third of US adults use alternative and complementary medicine. Retrieved December 11, 2006, from www.researchmatters .harvard.edu/index.php.


CHAPTER 14

Acting for Advocacy: An Innovative Team Training Approach to Self-Advocacy Deborah Zuver, Robyn Dorton, Wilson Finks, and Kira Fisher

Tell me, I’ll forget. Show me, I may remember. But involve me and I’ll understand. (Chinese proverb)

A

cting for Advocacy (A4A) is an innovative approach to leadership training for students and emerging leaders with developmental disabilities. Training participants can practice using tools to speak up about personal interests and choices and begin to create a life of their choosing. An inclusive team of four trainers with and without disabilities enacts scenes and leads activities to make the concept of self-advocacy come alive for individuals with disabilities. This chapter discusses the A4A team process and provides individual perspectives authored by each of the three self-advocate trainers on the team. “Together we’re better” is the motto of the self-determination movement. The A4A team values and demonstrates interdependency; working together, each team member has achieved a strong individual sense of his or her own independence.

A TEAM OF TRAINERS WITH AND WITHOUT DISABILITIES A powerful aspect of the A4A approach lies with the self-advocate trainers themselves. Throughout a training presentation, each trainer conveys individual perspectives as they co-lead a particular section of the curriculum. Self-advocacy curriculum topics were selected from best-practice literature and include knowing yourself, communicating effectively, problem-solving, and understanding rights and responsibilities. Trainers present points via activities, digital slides, personal stories, discussion, and enactments so that

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material is conveyed through multiple modalities. This approach allows participants to process and internalize the information in the way that they learn best—whether it is by visual, aural, or experiential means—and then try it themselves to practice applying the new tool or information. Each trainer has grappled with a range of issues and situations toward living a full life and actively participating in the community. Such firsthand experience inspires a passion and focus to support others in their similar efforts. The role of self-advocate trainers in the presentation is more than merely being present to offer an opinion. Each trainer is an equitable member of the team, bringing a particular skill and sharing leadership responsibilities. The team capitalizes on individual strengths and skills, underscoring the value of a diverse group of members. Trainers are forthright in their abilities and accepting of their disabilities. One trainer, for example, is a particularly strong actor and is featured in a scene about a student and her mom preparing for an important school meeting. Another trainer is not as comfortable acting but warms up participants with her lively introduction to the meaning of self-advocacy. A4A is geared toward high school students with developmental disabilities. These youth generally have limited opportunity to make decisions for themselves, yet they are about to transition out of school into the community with many choices ahead. As part of their school curriculum, students may learn information about self-determination skills, that is, about having personal control and responsibility for one’s life. Yet to apply specific skills in everyday life, youth need a focused opportunity to practice speaking up. They also need a solid sense of their potential. For an individual to look toward becoming a successful and competent community member, it is necessary to develop a belief in oneself as capable and effective. This sense of self-efficacy can emerge as youth observe others with a disability—the A4A team—demonstrating strong leadership ability and a full life. As training participants, students often identify with the self-advocate trainers and can be heard validating their own and other students’ abilities. They sometimes glimpse what they might envision for themselves in the future. Workshop participants often comment on the positive experience of being led through an activity by someone with a disability. For many, this is their first experience of seeing an individual with a disability in a leadership role. The impact of this experience is particularly powerful when the audience is a group of special education teachers, as it may even prompt a teacher to reconsider expectations for particular students.

BACKGROUND A4A was developed through Project STIR (Steps toward Independence and Responsibility) as a self-advocacy initiative at the University of North Carolina–Chapel Hill Center for the Study of Development and Learning (CDL). A4A was funded as a three-year Project of National Significance by the U.S. Administration on Developmental Disabilities (ADD). Since 1999, Project STIR has supported self-determination and self-advocacy through

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training workshops and other efforts throughout North Carolina and nationally. The University of North Carolina at Chapel Hill is one of the state’s research universities and the oldest public university in the United States. The CDL is designated by ADD as North Carolina’s University Center for Excellence in Developmental Disabilities Research, Education, and Service (UCEDD); each state and U.S. territory is served by at least one UCEDD. The CDL’s mission includes providing leadership training and developing and supporting innovative policies and services that lead to full community inclusion for individuals with developmental disabilities. A4A was developed with the support of the NC Department of Public Instruction to complement the Occupational Course of Study (OCS) curriculum. OCS is a high school diploma program available to students with an individualized education program and offers solid work experience in addition to classroom requirements. Since 2003, when OCS was established, the number of students with disabilities graduating from high school has increased. Learning self-advocacy is a part of the OCS curriculum; A4A offers a hands-on perspective to applying self-advocacy tools that teachers and students appreciate. A4A promotes self-advocacy as a lifelong empowerment tool that extends beyond a classroom lesson. The story of empowerment as an American legacy stems from a series of social justice movements aimed toward achieving the rights to which all Americans are entitled. Supporting self-advocacy and self-determination for people with disabilities extends from this long continuum of efforts. From the Civil Rights Movement through hard-won campaigns for human rights for workers, women, parents, the gay community, and consumers, Americans have led and inspired one another over the decades. The disability rights movement is the latest in this effort.

ENACTMENT AS A TRAINING TOOL Acting for Advocacy grew from the recognition that enactment is a helpful way for self-advocates to explore real-life issues and emotions and try out options for dealing with them. Enacting realistic scenes that deal with practical issues and the emotions they elicit can provide a rehearsal for life (Sternberg & Garcia, 1994). A good enactment can engage the group as a good story would. Even though enactments are brief, characters are drawn and feelings are depicted along with plot development. In the A4A approach, a facilitator prompts visual cues (a costume piece or prop) and spoken cues (“action” and “pause”) to indicate when the trainers are acting the scene and when the group can offer feedback and suggestions. Trainers plan the character and situation that they will present, but, as in real life, they make up the actual words as they enact the scene (Zuver, 2007). The brief, planned improvisational scene depicts a specific conflict that relates to self-advocacy—speaking up. At given moments, a facilitator pauses the action; audience members discuss their reactions and suggest options for the characters to try. The scene comes to life again and continues with

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a selected option. As the audience grows increasingly invested in the story, some youth are eager to get into the action and take a turn enacting a character. Their involvement provides practice in communicating assertively and problem solving and participants gain experience and confidence in a familiar setting for using these tools in real life. Incorporating role-play activities into didactic training exercises has become more common in recent years across a wide range of training settings and populations. However, some trainers intentionally minimize the dramatic power of a role-play in an attempt to avoid eliciting an emotional response that could distract participants from the “lesson.” Recent brain research has indicated, however, that emotion is strongly tied to memory, suggesting that highly dramatic scenes have the potential to reinforce learning. Information is easier to remember when paired with emotions, particularly positive emotions or emotions that are meaningfully appropriate to the material (Jensen, 1998). The scene becomes an opportunity to identify and name feelings and delineate them from thoughts and behaviors (Emunah, 1994). A defining component of the A4A process is that it moves role-play away from being a “how-to” demonstration of addressing a particular conflict or dilemma and toward a portrayal of realistic characters who deal with their emotional reactions while applying a structured problem-solving method. As scenes involve audience members on an emotional level and elicit a personal response, their input is applied to the problem-solving steps and enacted. They shift from passive audience members to active participants, allowing the entire group to practice a range of skills in the process. Feelings and issues are present, so the discussion is based in the here and now, rather than in the abstract future. This allows individuals who think concretely to better access and process information. When information is linked by narrative or story, it is generally easier to remember than when individual facts are memorized. This perspective is consistent with the theory that multiple systems are involved in the service of cognition, emotion, and the experience of self and others (Cozolino, 2002). The actors/trainers bring emotional energy to the scene and engage in realistic interaction with the other character(s), creating a natural pace and authentic portrayals. Thus, A4A is role-play as process, rather than performance. In preparation for training presentations, the A4A team participates in acting skills training sessions. Theater games, improvisation exercises, and other activities are adapted to give the team practice and strengthen their enactment skills. The A4A approach to enactment as a leadership training tool has its roots in theater games and drama therapy activities, which are intended to strengthen life roles. The approach is also derived from popular education, a process in the sense of being “of the people,” that emerged in South America in the 1960s. It was developed by Paolo Freire (2002) and applied to theater by Augusto Boal (1995) as a way for members of a community to educate one another and share in leadership for social change. Because the process begins with the participants’ experience, the community can analyze issues and make a plan together to carry out actions. This process can enhance communication and reflection among adults with a strong oral tradition, without

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the need for formal education and academic accomplishments. Thus, this approach directly meets the needs of many young adults with developmental disabilities. As scenes are engaging, the learning process is interesting and easier for participants to focus (Bailey, 1995). Another key feature is A4A’s Speak Up! Action Manual for Peer Leader Teams, which includes enactments and interactive exercises that are introduced in training workshops. The Speak-Up! manual presents curriculum topics on selfadvocacy and self-determination in an engaging and accessible format. Topics are identified from the best practice literature by the Self-Determination Synthesis Project at the University of North Carolina–Charlotte to include self-awareness, effective communication, problem solving, and rights and responsibilities (Wood & Test, 2000). Information is included on how to create peer leader teams so that students can begin to lead scenes and activities for one another; guidelines for advisors are provided.

THE IMPACT OF AN INCLUSIVE TEAM A4A showcases a team with clearly diverse abilities and skills who collaborate successfully. The A4A team of four trainers with and without developmental disabilities models an inclusive and spirited working relationship among its members. Some training participants have commented that an A4A presentation was the first time they had seen an inclusive team really working side by side. Witnessing this team reaching their potential may evoke a sense of self-efficacy in trainees as a contributing factor to the positive responses to A4A presentations. The team encourages students to form their own peer leader teams and to use helpful materials to support the process for students and their advisors.

INDIVIDUAL TEAM MEMBER ACCOUNTS This section is authored by each self-advocate trainer. Their personal accounts convey individual perspectives and describe struggles toward becoming community participants, leading to a commitment to train and support others. Robyn Dorton, Wilson Finks, and Kira Fisher are self-advocate trainers with an outspoken interest in sharing their stories. To develop this article, the team held a series of conversations facilitated by the project director member of the team. Each individual’s story was transcribed and compiled, preserving the individual’s own voice in the piece, but deleting some repetition and adjusting some parts for clarity. Together the team reviewed the final draft and offered suggestions for further changes and additions.

Kira Fisher Ms. Fisher is a self-advocate trainer who has assisted with coordinating Project STIR’s youth-focused projects since 2005. I was interested in self-advocacy all my life, from age three. That was when I had my first surgery that I can remember for my CP [cerebral palsy]. I had

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to have a half body cast on the lower part of my body. That was a turning point for my seeing my life as something important. My parents divorced and my brother was born that year. Some of that has carried over throughout the years as someone who needs to deal with a lot of personal challenges. That’s something I have to accept. Sometimes acceptance comes in stages. You don’t just accept it one day and it is totally always accepted. Times that were bad as a kid: I remember watching my siblings do soccer. There are wheelchair sports now, but at the time, there wasn’t. I was walking all the way from second grade until college. I was able to exercise in school and I didn’t get a motorized chair until college; I didn’t want to lose the ability to walk. But in some ways this has done me good because I have some independence I didn’t think I would have. Every day after work, I go home and stand up for an hour. I don’t want to lose that ability. I don’t walk around the neighborhood, though, unless someone is with me because of falling. I can walk, but it’s different, I need assistance. My equilibrium is off. That’s why I have a walker that’s backward. I also do a lot of exercises. All of my body is tight all the time. The first big self-advocacy issue I remember was when I first got to high school and they didn’t have an elevator. One of the hardest things for me was to have to leave the classroom 10 minutes early because if you don’t, you won’t get to your class in time due to accessibility issues. That was the first time I and my dad said there should be an elevator in the new wing of Chapel Hill High School—it shouldn’t have to take half my day to get to class! They gave me key access, which I kept around my neck for four years. I know that I wasn’t doing this just for myself, but for others who would come after me. It was my first leadership experience, but I didn’t realize it then. One of the things I learned—and I learned this because my dad was a lawyer—was that as long as I was able to tell people what I needed, I could speak my mind. For example, I had the ability to go to mainstream classes for regular English courses and get a regular diploma. I wasn’t taking remedial courses; I had a schedule just like everyone. Before I spoke up, it was like I didn’t have a voice. Everyone was speaking for me and told me I had to do certain things a certain way even if I couldn’t. It goes back to the protection thing—my parents feeling protective of what I could and couldn’t do and it wasn’t until I started speaking up for myself and said I didn’t want to do something that they started seeing my skills as a self-advocate. My first example that I can remember is going to the doctor’s office when I was seven. I remember saying to the school psychologist that I had felt talked down to because the doctor was speaking to my parents and not to me. It was like I was a third person in the room that didn’t have ears. By the next doctor visit, he came in and talked to me about why he had to take the cast off my legs and why the cast was there. He actually introduced himself. Michael Jackson was big then and he came in to the office with a Michael Jackson glove. “I’m here to take off your cast. It might be scary but here’s why we have to do this.” I said, “Can I have the glove?!”—because I liked Michael Jackson. As a result of my doing that, as the years went by he would use that as an example of how you talk with patients for his trainees as they came through his medical program. This happened at UNC Memorial Hospital.

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I got my BA in child development. I went into AmeriCorps and that was the biggest “light bulb” about my leadership skills. I called my dad after I came back from my second interview. I talked with him for about 20 minutes. “We wondered if you made your decision yet.” I said, “Yes, I would love to be an AmeriCorps member.” I had called my dad to let him know and that I was going to quit my job at the child care center. He said, “I support you in your decision, but I want you to know it’s going to be challenging.” I told him if I fail, he’s going to have to let me fail so that I could be a stronger person and so that I could learn from those challenges. After the first year of AmeriCorps, you have to apply again. I let my dad know that I was going to do it a second year and I was going to face challenges by working with another AmeriCorps member. The first year I was on my own. I first learned what the word role model meant when I did my service with AmeriCorps. Something I learned from working with students is that I’ve been a role model all along and I didn’t know it. For me, I spoke up for myself but I didn’t know the words to use until I came here. Project STIR gives you the language when you are talking to anyone about self-advocacy. Working as team makes a difference because we each have our own strengths. I help the self-advocate trainers and they also help me physically. If I need something off a shelf, they do it. A lot more can get accomplished with all four of us. When I first started participating in training presentations, I used my background as a good speaker. I was in theater in high school—I was a character in Orphan Annie—a homeless person. I did improvisation, I sang, and then I was in my chorus in high school. It gave me the confidence to know that I can be in front of people and be listened to, because not all people do. It was just a lot fun. I remember every time I was on stage. I go and see plays and wonder why I’m not on stage today. I enjoy doing scenes with Project STIR. When I step into a different role, I’m able to see the emotions that another person might go through. For example, when I’m playing somebody’s mother, I’m able to step outside of myself. I know it gives me more self-confidence to know what’s important to me and bring more out in the character. I’m helping self-advocates, but it’s also helping me. Audiences usually respond after the presentation. You can see in their faces whether they are following along or not. We have questions afterward. We had several students come up and say: “I have an idea for a scene for someone to act out next time.” I remember one young woman who came up to me after the presentation and said, “I’m very glad that you did that scene because I feel that you’ve shown me that now I can do more for myself than I thought.” She asked me how old I was and if I was in school. I think she felt more comfortable with who she was after seeing the scene. Being able to have people like that student come up to me gives me more self-confidence, and it also shows me that I’m not only bringing out my own strength but I’m helping other people to bring out strengths in themselves, whether they have a disability or not. I think about things a lot more now before I act on them. I’ve been able to take what I’ve learned and apply it to my life. I’m more conscious about things before doing them. This has helped me on a personal level with my

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family. I ask myself, do I really want to do this or am I doing this just to please someone? Before Project STIR, I was conscious of my feelings, but it wasn’t always the first thing I thought about. It doesn’t always work that way, but it works in most situations to know the feeling behind why I’m doing something. When you focus on your feelings it helps you get outside of yourself and not feel so overwhelmed or in a state of confusion as to what to do next. It’s like we say in the presentations, the feelings get to the reason whey the behavior happens. If you are angry you are not going to want to talk. I was thinking back to a conversation I had with an old friend who would tell me about things he wants to do—like he wants to go to grad school and get a teaching degree in history. But he always seemed to stop himself. Our conversations would be my encouraging him. And it seemed to come round to that he needed to ask for help. And it’s not a sign of weakness; it’s a sign of strength to ask for help when you really need it. We each—all four of us—have individual strengths that make the team stronger when we work together. That’s actually true for any team whether you have a developmental disability or not. That’s true for everyone in this world. None of us would be able to do this by ourselves.

Wilson Finks Mr. Finks is a self-advocate who has worked with Project STIR since its inception in 1999. He was recently appointed by NC Governor Mike Easley as a new member of the North Carolina Council on Developmental Disabilities. While I was growing up, my parents were making my choices. Then it felt good to let them know I want to make my own choice. I graduated from Partners in Policymaking,1 and now I’m a member of the North Carolina Council on Developmental Disabilities. And I’m very outgoing. I’ll do anything to help people become their own self-advocate. I don’t know anything about being a guardian, but helping folks become better self-advocates, I know about that. I didn’t participate in anything at school—I didn’t even participate in any talent shows. I didn’t advocate for myself very much. Not until I got out of school did I participate. I was in my self-advocacy group, Up with People— well, we had to change the name to Up with Orange [County] because there was a singing group by the other name. I was the president for a while. That was my first experience with leadership. When I got to the job at 411 West [restaurant], well, I was able to speak up. That was the first time I advocated for myself to get the job. I went and picked up the application. Mom helped me fill it out. I went in and did the interview on my own and they just hired me. Before, my job coach always came with me. I had a little help getting a job at Harris Teeter Market, but not much and I’ve been working there now for 12 years. About eight years ago, I took a trip to New Orleans to a conference for professionals who work with people with disabilities. I went with Angela and Greg and Rebecca from the CDL. Greg had known me and they were surprised about how I spoke up for myself. They called and asked me if I’d like

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to travel with them to New Orleans. They wanted me to tell the people in the audience how I was able to speak up and advocate for myself for a camp counselor’s job at Presbyterian Point. A couple days after I got back, they called and asked if I wanted to be part of the CDL advisory committee. Then I started working with Project STIR. Project STIR is different from other training. There’s more participation by the audience if it’s a workshop. We did scenes that were for one or two people to participate. We got solutions on how to solve the problem. There’s a specific topic and everyone has to come up with a different way to solve the same problem; that’s the spiral model. Transportation is an issue that you hear a lot. A trainer has to know how to stand up in front of people. You have to be very helpful to the team; we all learn because you give a whole bunch of your background. Then we take some of that and put it with what we know. Everybody on the team knows what the other person is going to be doing and then we can lend a helping hand. If you are sad, everyone around you is going to want to know why. If you are angry, they want to know why you are angry. I enjoy getting up there and knowing that they “get” what I am trying to tell them. It feels good. After the first time—I kind of had butterflies—I haven’t been nervous. For me, it was just being able to reach out to a person and say I’m here if you need to talk to someone. I felt I could give them a foot up. They can say, “Hey, if this guy could do it, so can I!” A guy came and said to me, “I can speak up for myself, too. I’m old enough.” The first time I heard that from someone it really made me happy. Acting—it was broadening my mind. You’re not acting someone completely different. You are playing a different character so you need to think, how would that character act? If the person was sad, you’d have to have a sad face. You make the words you have to say from your character. It made it easier for me. In the role-play, “Is Anybody Listening?” I play Jane’s teacher, Mr. Mills, but I kind of feel like Jane a little bit. I had to decide what I wanted to do as far as jobs or getting my own place. I also play the part where I was coming in to apply for the job at the DVD store. It made me feel good because I’ve had friends who have had similar situations. The first guy in the scene came in and he was ashamed because he didn’t know what he could do and if he could be any help in the DVD store. The second one was aggressive. Then the third one—he came in and had the résumé—and it made me feel like I could get a job. We got people to come up and do the assertive-aggressive-passive scenes and practice how they would come in and what they would say. We told them not to be all up in their face. I played the assertive—that’s the one I liked playing the most. What’s the difference between aggressive and assertive? Aggressive is someone who is angry all the time. Well, you’re not going to get what you want if you are angry all the time. You’re not going to get anywhere. You have to make sure you’re going to do a good job, be nicely groomed, have a good haircut. And make sure they know you are there to work and that you won’t get angry at folks. You could be someone who’s not assertive, but you have to have someone who is going to want to work and want to be there for the customer.

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My advice for leading an activity and being a team member? Look at people— say a couple of points that stick in your head to make it easier to present. Write key notes down—it doesn’t have to have all the points. But if you can say certain points and certain words, it can make it easier to present. It’s not all of the words you have to say. Project STIR got a grant to do Shifting the Power (STP). We were trying to shift the power from the adults that had people like me in the family so that they could have more power over what went on in their lives. We sent out applications to a whole bunch of the states and we got a response. We went there to train self-advocates so that they could use the tools we had available for their social skills and self-advocacy groups. So that they could make their own choices as far as living on their own. We helped out a couple of folks who were living with their family; a couple were living on their own. When we went to Vermont, most of the people were already their own guardians. I went to American Samoa and Hawaii with STP. It was interesting—I really enjoyed being there. Hawaii was where we went first; everyone there came in from different islands. Everyone there at the training had disabilities. One woman came in from the Big Island of Hawaii. She was able to get a lot done for people with disabilities on the island. She was a big advocate for folks who lived in her village. One woman was in a wheelchair and she helped her advocate for curb cuts. We got in really good with the mayor there; he showed us all around. He told us about the flying foxes. He said self-advocacy was a big part of the community there. Oh, the people were ready to go! They went and made copies of all the problem-solving steps to make posters. When we came back in the next day—the posters were all copied, they had them laminated and everything, and they were putting them together. We got on the front page in American Samoa. There wasn’t but one selfadvocate who attended the training. All the other self-advocates didn’t. He was able to speak up and say, “I want to attend this training.” The guy spoke up to people in his village. He said that he really wanted to be able to participate. He wanted to meet us. They were telling him, “We want to send someone for you.” They didn’t want us to know anything about the special people and that’s why they wouldn’t let anyone with special needs come. He told them straight, “I don’t want you to let anyone go but me. I want to go.” He took information back to his small village. All the rest were professionals from the other villages around. I was disappointed. I think the professionals got the idea. They were inspired on how well I had become a self-advocate and that I speak up for myself and that I could bring that to them. They were glad we were there so they could pass it on. I talked a little about myself and how I advocated. They said, “Wilson, we know that you’re a person advocating for yourself.” That felt good. I enjoyed doing it. Being able to get up there and present for those folks. They didn’t know what self-advocacy was—really didn’t know—until we got there and now they are speaking up for themselves and other self-advocates and helping the community get curb cuts that they need. Activities we are doing now in Acting for Advocacy we used in STP. Self-advocacy—it feels like freedom! Freedom to go where you want, when you want. I do what I have to do and if what I’m doing is helpful to

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folks—getting a job—getting from here to home—knowing what buses I need to take to get home. I even helped my old girlfriend to use the buses to get home. The Gerry situation: I helped Gerry advocate for being able to get out of the institution and getting a place. Others helped him locate the first job that he got, but we just made sure that there was community out there for him to get to know and how to use the bus system. We got a bike for him and he rode every day, and Saturday and Sunday we’d go to the park. We also made sure that when he got out, the money he had followed him and that he had the resources that he needed to have when he moved into the community. I get out there and participate in activities—go to the movies and hang out with friends. Sitting at home is not contributing to your community. If you are just sitting at home watching TV, you aren’t participating with your self-advocacy group, with Special Olympics. If you are just sitting at home, you’re not doing much. I like being part of the community. I never had anyone telling me I couldn’t do anything.

Robyn Dorton Ms. Dorton is the youngest member of the team. She has won two statewide awards for self-advocate of the year and has been an active self-advocate trainer since 2000. For me, I have to go back to when I first started with Up with Orange, my self-advocacy group. I first started as secretary and rounded myself up to being a president. I remember when I first “got” self-advocacy. It was when I was 15 in high school, two weeks after my mother had died. My guidance counselor called me to her office. I thought I was in trouble. “No, I just want to talk to you.” She wanted to talk about how to stick up for myself if anything should happen ‘cause both me and my dad and my stepmom were not getting along. That’s when it hit me what she was telling me. She was telling me all about self-advocacy. I had been sticking up for myself but didn’t realize until then that this was self-advocacy. I was sticking up for other people and for myself. Ever since then, if I got in trouble, she would stick up for me and I guess she was a stepping stone for me—a mediator. I know what I’m good at. Some people say I’m good at learning different things. Some people say I’m good at talking in front of people. Some people say I’m good at remembering to take medications. People say that I have the strength to help around the office. I can easily help out. They say I’m “people-easy.” I’ve been told by my own advisor of my self-advocacy group, Tom, that he’s been taught a lot by me. Like because he came from TEACCH [Treatment and Education of Autistic and Related Communication-Handicapped Children] and he’s been working with people with disabilities. But just coming on as an advisor, it’s helped him learn a lot not only from other selfadvocates, but from me—like just learning how to get responses to things— like to ask for people’s opinion. He’s communicating with people a little bit better—learning people skills from me. Some people don’t know People First

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language and some people do know People First language.2 If they don’t, it’s really tough for that person because they can offend someone. People who have worked with me before—even people from other countries—have learned how to work with people with disabilities and they are much more aware of potential abilities. It gives self-advocates a chance to learn skills from other people like cooking different foods—foods from another country. One staff taught us how to cook foods from Africa. It’s really good food and he taught us a lot. He showed us how to build certain things—like little wood animals. Some people don’t have that ability and some people do. I was put into foster care from age 15 to 18. From 18 on I had a case manager who was enthusiastic about getting me out of group homes and on my own. It started within my circle of friends. A circle is a group of people that can help a person with something small and something large in their life. In your circle you have your circle facilitator, you have your inner circle—your boss, close friends, business people. Then you have your outer circle—other friends, other family. The way it works is the circle helps with planning, finding resources in the community, and with personal goals. My circle helped me with getting my guardianship. First we planned how to go about it. We had a meeting with the group home director and the manager. And then we started from my case manager and went to court. We had my facilitator, my boss, several friends of mine. At the time, I didn’t know that my guardian was going to hand over my guardianship. It took from the time I was 18 until I was 24. There were some bumps. I was told I couldn’t get my guardianship the way the system was set up because of reasons, but they weren’t giving reasons. I had to go through lots of red tape called mumbo-jumbo. The words that my case manager used was “bleep-bleepbleep” if you keep her in there! I was in court and I heard, “Ms. Dorton, you are your own guardian.” By the time we got done with all this, it was . . . I was feeling overwhelmed. I put up with a lot of mess but we had a party and a half! Even though I’m my own guardian, I still have people to help me with things. Like with money—I know myself well. If you don’t have that extra backbone, then you are out of luck. I had motivation and drive and I didn’t back down. Practice makes perfect. Keep practicing. Practice the scenes and your skills. At Project STIR, we work as a team. Here’s one example—I can be teaming up to hook up the laptop and then Wilson is maybe passing out the handouts and booklets, and Kira is greeting people. Another example could be if something does go wrong, at least we have a back-up plan. For example, if one team member is sick, teams could be good because we know that the others can jump in and help do role plays. Last Monday, I was around the office and just started helping pack up for the training in Winston-Salem—the folders, and things—Deb didn’t even realize that I had started helping! When I first started with Project STIR, Angela and Greg came to an Up with Orange meeting and asked me if I wanted the job. I had to make sure it wouldn’t affect my benefits; I can only work a certain number of hours because of Medicaid and disability insurance. It has been great the eight years I’ve been here. I’ve enjoyed working with people. I found I had a lot

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more skills than I knew I had. I wish the self-advocates we train would get more involved in the community and be more interactive. Working as a team shows them strength in numbers instead of just trying to do everything by themselves. You can bring out each other’s strengths. At the beginning, Wilson and I went to conventions and did the Story Wall. We would let self-advocates tell us their story—what their dream is and what they want to be in the future. One woman wanted to be married to a prince and be rich. Another wished she could get married without the state interfering with her checks. As you read the stories, if you are putting yourself in their shoes, it’s like a stepping stone; neat. Some had CBS [client behavioral support] workers with them and they helped them pronounce words—some of them were hard to understand. As an individual who grew up with a speech impairment like myself, I know to look at people directly. At age seven, I had a cleft palate surgery and I was in the hospital for at least three to four days. I have three role models. One is my mother; she was always my support and inspired me to be healthy, be happy, and inspire yourself to be what you want to be. Two is my third grade teacher who taught us to sing a Lee Greenwood song. And Maya Angelou has inspired me to write poetry. I had sent her one of my poems and she has written me a long letter. She gets a lot of fan mail and it took a while to write me back. She personally wrote it and signed it. She is one of the biggest role models in my life because she writes about her own life and expresses what she went through. As you meet new self-advocates over the years, even youth, you know they can inspire you to do something better, to better yourself. If I meet other people along the way, I can better myself. For everything you don’t know about yourself—there are new things to learn.

CONCLUSION Deborah Zuver Ms. Zuver is the program director for A4A and has been a member of the team since 2003. She draws on her interest and background in special education and drama-based training to create projects that involve interactive learning to address self-advocacy. Ms. Zuver provides the concluding comments for this chapter. The term self-advocacy is closely identified with the disability community. However, striving for empowerment and equality is universal. Throughout my years of experience as an educator, clinician, drama therapist, and program director, I have been privileged to witness a range of populations speaking up for their rights and striving for an opportunity to live a full life. People with a history of trauma, learning disabilities, poverty, addiction, psychiatric disabilities, incarceration, and other experiences can feel disempowered and disenfranchised. Despite differences among these groups and their experiences, finding a common vision and appreciation for diversity can inspire. I see our A4A team of self-advocate trainers reaching out to others with developmental disabilities offering support, information, joy, and a boundless sense of humor.

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I am reminded that it is also our larger community that becomes enriched as these individuals develop their potentials. A4A engages audiences, reaching out with an inclusive message that supports efforts to speak up for themselves and for others.

NOTES 1. Partners in Policymaking was established in Minnesota in 1987 to provide leadership opportunities for adults with developmental disabilities and parents of young children with disabilities. The program trains participants in best practices in the area of disability and teaches them to actively shape disability rights policy through leadership. 2. People First language refers to using words that focus on the person first instead of on the condition, for example, child with a disability rather than disabled child.

REFERENCES Bailey, S. (1995). Wings to fly: Bringing theatre arts to students with special needs. Rockville: Woodbine House. Boal, A. (1985). Theatre of the oppressed. New York: Theatre Communications Group. Cozolino, L. (2002). The neuroscience of psychotherapy: Building and rebuilding the human brain. New York: Norton. Emunah, R. (1994). Acting for real: Drama therapy process, technique, and performance. New York: Brunner-Mazel. Freire, P. (2002). The pedagogy of the oppressed. 30th anniversary ed. New York: Continuum. Jensen, E. (1998). Teaching with the brain in mind. Alexandria, VA: Association for Supervision and Curriculum Development. Sternberg, P., & Garcia, A. (1994). Sociodrama: Who’s in your shoes? Westport, CT: Praeger. Wood, W., & Test, D. (2000) Self-determination synthesis project final performance report. Washington, DC: U.S. Office of Special Education Programs. Zuver, D. (2007). Acting for advocacy. In A. Blatner & D. Wiener (Eds.), Interactive and improvisational drama: Varieties of applied theatre and performance. Lincoln, NE: iUniverse.

CHAPTER 15

International Accessibility: Reflections on the Value of Disability Rights Law, Based on Travel to Athens and Rome Angela Kuemmel and Rebecca Kuemmel

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n the years since the Americans with Disabilities Act (ADA; 42 USC. Sec. 12182) was signed into law in 1990, it has changed the way the physical environment accommodates people with disabilities, as well as how American citizens perceive and behave toward people with disabilities. In line with cultural values of the United States, such as equality and independence, the ADA promotes the equal participation of people with disabilities in mainstream society. As a result of the ADA, Americans with disabilities are entitled to receive equal opportunities in education, employment, and housing, which allow them to be independent, contributing members of society. Although this law is mandated in the United States, it is not common legislation in all countries around the world. Consequently, Citizens with Disabilities living in countries without disability rights laws face tremendous obstacles to function independently. This chapter provides a review of legal and psychological literature, as well as the authors’ personal international travel narratives from two countries to examine the role that law plays in the physical and psychological functioning of people with disabilities. The information offers valuable insight into how people in different countries perceive disability and supplies substantial evidence for the need of global communication on the topic. In 1990, President George H. W. Bush signed into law the ADA, a civil rights law designed to prohibit discrimination and increase accessibility for people with disabilities. Bush stated, “Every man, woman and child with a disability can now pass through once closed doors, into a bright new era of equality, independence and freedom” (Lerner & Belts, 2005). This belief is expressed in the accessibility of not only the physical environment in America but also in the actions of American citizens who uphold the equal opportunity

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policy. Research has found that there is a growing awareness of the fact that people with disabilities have to cope with unfriendly environments hostile to their needs (Imrie, 1998). Consequently, in the past 10 years, approximately 40 countries have enacted a similar domestic disability discrimination law (Kanter, 2003). However, accessibility and equal opportunity remain problematic in many countries around the globe. In this chapter, we integrate professional literature, domestic and international law, and personal experiences to provide readers with a better understanding of international accessibility and its implications for people with disabilities. Since we will make use of personal experiences, it seems appropriate to provide a brief introduction. Angela M. Kuemmel is a doctoral student in clinical psychology at Nova Southeastern University in Fort Lauderdale, Florida. She is also a C7 quadriplegic as a result of a spinal cord injury in 1996. Her able-bodied sister, Rebecca Kuemmel, has a bachelor’s of science in exercise science. She is currently a graduate student in physical therapy at St. Louis University in St. Louis, Missouri. By including our experiences, we hope to provide narratives illustrating the numerous challenges encountered by people with disabilities in everyday life and how it impacts their ability to function independently. It is important for readers to note that Angela’s only international travel experiences to date have been to Italy and Greece. While we have heard wheelchair accessibility may be better or worse in other countries, our experiences and comments are based on these limited experiences. Although Rebecca has traveled more internationally, she has focused her narratives on her experiences traveling with Angela, which most clearly demonstrate the challenges people with disabilities encounter.

OVERVIEW OF THE ADA Although every disabled person has different abilities and subsequently different needs, the wheelchair accessibility of a disabled individual’s environment plays a large role in how people with disabilities function in different societies. There are many different models which can be used to conceptualize disability. In 1997, the Committee on Assessing Rehabilitation Science and Engineering at the Institute of Medicine endorsed a new social disability model that described disability as the interaction between the person and his or her physical and social environment (Brandt & Pope, 1997). More specifically, they described: Disability is the expression of the gap between a person’s capabilities and the demands of the environment—the interaction of a person’s limitations with social and physical environmental factors. Many disabling conditions are thus preventable or reversible with proper and adequate rehabilitation, including environmental modification. . . . The amount of disability is not determined by levels of pathologies, impairments, or functional limitations, but instead is a function of the kind of services provided to people with disabling conditions and the extent to which the physical, built environment is accommodating or not accommodating to the particular disabling condition. Because societies differ in their willingness to provide the available technology and, indeed, their

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willingness to provide the research funds to improve that technology, disability ultimately must be seen as a function of society, not of a physical or medical process. . . . Disability is not inherent in an individual but is, rather, a relational concept—a function of the interaction of the person with the social and physical environments. (pp. 25, 147–148)

Although the ADA predated Brandt and Pope’s model, it supports their perspective in Title III, which covers public accommodations. Title III states, “No individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodations.” Public accommodations include facilities such as restaurants, hotels, theaters, museums, and offices of health care providers. Title III requires accommodations that are readily achievable, meaning “easily accomplishable and able to be carried out without much difficulty or expense.” Examples of this include widening doors and installing ramps. These changes have had a drastic impact on the lives of people with disabilities. White, Paine-Andrews, Mathews, and Fawcett (1995) found a 60 percent increase in the frequency of trips into the community for wheelchair users after ramps were installed in their houses. The ADA has changed the way that people with disabilities function in society. Given the value our country places on equality and independence, people with disabilities are entitled to equal opportunities in education, employment, and public services. The ADA has also changed the attitudes with which people with disabilities are perceived and treated. These policies and attitudes form the cornerstones of the field of rehabilitation, which aims to reduce the impact of acquired disabilities and improve physical and psychological functioning. The ADA not only serves as a treatment guideline for the goals people with disabilities can accomplish in independent living, education, and vocation but upholds the equal opportunity policy that makes it possible for people with disabilities to succeed and achieve their goals. When Angela suffered her spinal cord injury in 1996, she was told by rehabilitation professionals that she would still be able to lead an independent life and achieve many of the same goals as her able-bodied peers, including graduating from high school, learning to drive, attending college, and pursuing a career. She received intense physical and occupational rehabilitation, which focused on teaching her to achieve physical independence and self-reliance, as well as the spinal cord injury peer counselors she met who modeled independent lifestyles. Angela learned about the ADA and that it protected her rights to equal opportunity in education and employment. She also became familiar with concepts such as reasonable accommodations, which allowed her to be on an equal playing field as her peers and succeed in achieving her goals. Angela’s sister, Rebecca, learned alongside her and encouraged her to be independent, expecting her to overcome obstacles in pursuit of her goals. In the 11 years Angela has lived with a physical disability, she has found most American public and private facilities accessible and the attitudes of most Americans to be accepting and willing to provide accommodations. This social attitude has also impacted the way that Angela and Rebecca interact with their clients with disabilities as trainees in psychology and physical therapy.

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Angela is able to offer clients with acquired disabilities hope that they will continue to be contributing members of society. She can also demonstrate an independent lifestyle. Rebecca can teach clients independent living and wheelchair skills. This would not be possible if the ADA and the rehabilitation laws that came before it did not exist to ensure accessibility. Although the ADA has led to many improvements in accessibility for people with disabilities, there are still many environmental challenges. Pierce (1998) studied barriers to access in the lives of nine people in Ohio and Pennsylvania who used a wheelchair full-time. Four common themes emerged: frustration with issues of independence, frustration with people’s attitudes toward people with disabilities, frustration with people’s lack of understanding of the situations of individuals with disabilities, and the desire of people with disabilities to become involved in the decisions regarding the development of accessible facilities. “Architectural barriers are a form of discrimination that is not often understood by able-bodied people, but are especially distressing for people who use a wheelchair for full-time mobility. It is important to remember that signs denoting [accessibility] do not guarantee these environments are, in fact, accessible” (Pierce, 1998). As travelers, it has been our experience that travel, especially transportation, is an area in which we most frequently encounter accessibility problems. In recent travels to San Francisco, Boston, and New York, we encountered several problems with the subways, including broken elevators at “accessible” stations and four- to six-inch drops from subway to platforms at stations marked as accessible. The worst problem occurred when we were stuck on a subway carriage when the accessible doors failed to open. This forced us to stay on the train until we reached another accessible stop, where we switched trains and resumed our trip to our hotel. Our trip was extended by an hour. We have also found some accessible taxi services to be unreliable in cities such as San Francisco, Washington, DC, and Fort Lauderdale. On the positive side, in our experiences traveling in the United States, we have found that our hotel accommodations and attractions are consistently accessible. For the most part airlines and their employees have been familiar with the procedures and needs of travelers with disabilities. However, our experiences traveling internationally provide a stark contrast to our experiences traveling in the United States.

TRAVEL NARRATIVES A 1991 United Nations report stated people with disabilities live in “deplorable conditions, owing to the presence of physical and social barriers which prevent their integration and full participation in the community” (Kanter, 2003). During the summer of 2006, we traveled to Athens, Greece, and Rome, Italy, with our mother, Mary. We were expecting accessibility to be an issue given Rebecca’s previous international travel experiences, but neither of us was prepared for just how big the challenge would be. Angela had not traveled internationally before. Rebecca studied abroad in Madrid, Spain, during the fall of 2004. During the months she lived there, she rarely


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encountered people with disabilities out and about town. She had noted signs of problems with wheelchair accessibility, such as old buildings with entryway steps and lack of accessible transportation. However, it was difficult to determine the degree to which different barriers would cause problems for someone using a wheelchair. Although Angela typically used a power wheelchair, we decided that she should use her manual wheelchair for the trip, as it would allow her to overcome accessibility barriers more easily. The problems with accessibility we encountered began with our five-star hotel accommodations in downtown Athens. We arrived to find that the grand front entrance was not accessible; we would have to enter and exit the hotel by a side door that was locked at all times. Therefore, anytime we wanted to exit, Rebecca would have to go to the front desk and find a bellhop with a key or press the intercom button located outside to request a bellhop to unlock the door for us. We also found that the shower in the accessible bathroom was very narrow and Angela was unable to shower independently, which she was normally able to do. She was unable to enjoy the roof-top pool, due to a lack of elevator access. One might say these were minor inconveniences, but they began to paint the picture of what life was like for Europeans with physical disabilities, at least in Athens or Rome. Imagine if all able-bodied guests could only enter their five-star hotel from a side entrance, requiring someone to unlock the door to permit entrance or exit. We imagine there would be many upset guests. The barriers to accessibility continued when we found a lack of accessible paths in Athens. Many sidewalks lacked curb cuts or ramps that allow wheelchair users to cross city streets. If a sidewalk actually had a curb cut, it was often blocked by a car parked along the street. Therefore, we often “bumped” Angela’s manual wheelchair up and down curbs using a “wheelie” (raising the small front caster wheels into the air and rolling the larger back wheels up or down the curb). This maneuver is easily performed by an assistant (or sister) using good body mechanics but is an obstacle to independent mobility for many people in a manual wheelchair. For someone using a power wheelchair, the lack of curb cuts would completely prevent passage as it is too heavy for someone to lift. Another challenge was getting to and from the station near our hotel. The most direct route was by passing through a scenic garden that unfortunately had gravel paths. Gravel is a challenging surface to push through, whether a person is propelling herself or himself or is being pushed by someone else. We navigated the gravel by again using a wheelie to roll only on the larger back tires. There was another route available, consisting mostly of paved sidewalks but it was out of the way and again lacked curb cuts. Once we reached the station, however, it was wonderfully new and totally accessible. This is a situation we found ourselves in many times while traveling in Athens and Rome—a place would be perfectly accessible, but getting to it was impossible. Our favorite example of the discrepancy between accessibility and challenging barriers was in our hotel in Rome. We had a great room with an accessible bathroom consisting of a full, spacious roll-in shower, hand-held shower head, a sink with space for a wheelchair user to roll under, and wide doorways. This room was located on the second floor and the elevator door

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was too narrow for a wheelchair. To get to the room, Rebecca would hold up Angela’s wheelchair by the push handles (with Angela still sitting in her chair). Our mother would remove Angela’s manual wheelchair tires. Next, Rebecca would carefully wiggle Angela and her wheelchair into the elevator on only her small front casters. We would ride the elevator, Rebecca holding up Angela and her wheelchair, while Mary would go up or down the stairs with the wheelchair tires. Then we would carefully wiggle out of the elevator, snap the tires back on, and be on our way. It was very difficult to find accessible restrooms with enough space for a wheelchair to enter. Airline employees were consistently confused by Angela’s need to have her wheelchair immediately upon departing the aircraft, instead preferring to deliver it to baggage claim. Taxi cab drivers also seemed to not know what to do when transporting a passenger with a disability. We noticed that handicap parking spaces were not common. These experiences gave us the impression that people with disabilities were not a part of mainstream society in these countries. Over the course of our two-week trip, the frequent problems with accessibility affected all of us. Given the difficulty she had navigating her wheelchair and her consequent dependence on family members for assistance, Angela began to have negative thoughts about her disability. As a psychology graduate student training in cognitive behavioral therapy, she was aware of how her thoughts, attitudes, and beliefs impacted on how she felt about her disability. As someone who is usually optimistic and determined in the face of challenges, these were new feelings for her. Rebecca also felt frustrated and helpless because she was unable to make the trip easier for Angela. Aside from accessibility problems, we noticed that people’s reactions appeared to consistently contain surprise and pity. We were repeatedly asked if Angela was able to walk or go up steps. People seemed surprised that she could not walk at all, yet she expected to participate in the same activities as her able-bodied family members. People we encountered seemed apologetic for the accessibility barriers we faced, but simultaneously seemed confused as to how to help us. Over the course of our trip we formed the impression that in Athens and Rome, people with disabilities were not active nor considered contributing members of society. We make that observation, which is a personal impression, solely based on the inaccessibility in the two cities and people’s reactions to Angela.

WORLDWIDE ACCESSIBILITY During our travels, we did not encounter many people with physical disabilities, and we were curious: are there people with disabilities in Athens and Rome? In Europe? If so, where are they and how do they get around? Given our studies in rehabilitation psychology and physical therapy, we were also interested in how people with disabilities were able to function physically and psychologically amidst the inaccessibility that we experienced in Athens and Rome. We have researched these questions to find that people with disabilities make up a large part of the world population. Herr, Ito, and Weber reported a consensus estimate of 500 million (1999), a number that is increasing as the


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population increases. War, other forms of violence, inadequate medical care and natural disasters are also contributing to this increase (Kanter, 2003). Knowledge of the ADA and its real-world impact has been promoted around the world by people who visit or study in the United States from other countries (Herr et al., 1999). Curious about what (if any) laws governing accessibility were in place, either within the European Union or individual countries (specifically Greece or Italy), we contacted the largest international law firm in the world, Baker and McKenzie, to inquire about legislation in Italy and Greece regarding disability. Baker’s affiliated offices in Milan and Athens provided us with memoranda about such laws (Biolchini, Puglisi, & Baker & McKenzie, 2007; Kokona, Dryllerakis, & Associates, 2007). In Greece, disability accessibility law has not been covered by a single act, such as the ADA. Instead, disability issues are only partially regulated in a variety of legal documents and often in various legal forms (laws, presidential decrees, ministerial decisions) (Kokona, Dryllerakis, & Associates, 2007). Greek disability law pertains to buildings, urban transportation, working facilities, hotels, airports, and boats. Each area is not only required to be accessible, but must train employees in disability competence and requires them to develop the necessary skills to meet the needs of people with disabilities. The Greek legislators have realized there is more progress to be made, especially in the area of public transportation; they are working to improve accessibility for people with disabilities. One of their more recent resolutions granted access to education for students with disabilities. In Italy, like Greece, disability legislation has not been covered by a single and comprehensive act like the ADA. Italian disability law covers access to architectural barriers, access to the social environment, and compulsory employment. Similar to Greece, there is more progress to be made here. Italian Presidential Decree no. 384/1978 stated regulations for main entrances of buildings (a minimum limit of 1.50 meters or 59 inches) and elevators (1.50 meters or 59 inches by 1.37 meters or 54 inches). Although the specifics of these standards may seem nominal to a nondisabled individual, they can mean the difference between access or exclusion. Our elevator in Rome did not meet these requirements. In comparison, the ADA mandates that 50 percent of the entrances to a building must be accessible and all doors must have a minimum opening of 32 inches (0.8 meters). Elevators are required in all buildings, except buildings that have less than three stories, or are less than 3,000 square feet per story. In addition, elevators must access all stories of the building, have a minimum door width of 36 inches (0.91 meters), and have interior room to allow entrance, maneuvering, and exit of the wheelchair. In our experiences traveling in the United States, we have not yet encountered an accessibility problem with an elevator. Italian Law no. 104/1992 focused on “public attention on the social integration of disabled relating to the surrounding environment. Hereby, this regulation has been finalized to remove architectural barriers to any public or historical place.” We did find many accessible accommodations throughout Rome. The Pantheon had a ramp located on the side; the grade was even within ADA regulation such that Angela could push up it herself! The Vatican was very accessible. There were ramps and elevators for access to the

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Figure 15.1. This is Angela riding the wheelchair lift up and down the steps to the Sistine Chapel at the Vatican. Additionally, there was a helpful and knowledgeable employee standing by, ready to operate it! Courtesy of Angela and Rebecca Kuemmel.

various levels for people with mobility limitations. We were pleasantly surprised to find a wheelchair lift up and down the steps to the Sistine Chapel (see Figure 15-1). Additionally, there was a helpful and knowledgeable employee standing by, ready to operate it! The only part of the Vatican that was not accessible was going up to the top of the dome of Saint Peter’s Basilica. However, we were so happy with all that we could access, we did not mind missing out on the great views from the dome. Unfortunately, this was not the case for the Acropolis in Athens. Our tour bus leader called ahead to alert the staff at the Acropolis that someone in a wheelchair would be coming later in the morning. He assured us the Acropolis was accessible but when we arrived, we had to push up a very steep hill. We got to the gate and had to push around to the accessible exit gate (the entrance was not accessible). We reached the exit only to be told that there is an elevator to the top, but it can only be operated “on days without too much wind.” Unfortunately, the day was too windy. Aside from being very disappointed, we were curious—on a hill that is 150 meters (490 feet) above sea level, when isn’t it too windy? The various disability rights laws that have been enacted throughout the world differ not only in their structure and coverage but also in the way they are enforced and how they impact various societies. When disability is viewed from a social perspective, dependent on the environment from which it arises, different societies will have different concepts of disability and how it


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is protected by law. The ADA is based in a society in which independence and equality are strong values. It is a civil rights law, not a social benefit law such as those found in Europe. These countries have adopted social welfare laws that are based on a medical model of disability, in which they view a person with a disability as an object to whom benefits, treatment, and rehabilitation is provided, rather than as a subject of the law’s protection (Kanter, 2003).

IMPACT FOR REHABILITATION PROFESSIONALS AND OTHERS WHO WORK WITH PEOPLE WITH DISABILITIES Professionals from different mental and health care disciplines enter the field of rehabilitation with the goal of increasing the independence and functioning abilities of people with disabilities. The view of disability outlined earlier, an “interaction of physical limitations with social and physical environmental factors” requires rehabilitation professionals to consider the client’s environment when determining treatment interventions (Brandt & Pope, 1997). For a physical therapist aiming to improve a client’s physical functioning, this entails working to improve physical impairments and functional limitations, such as increasing upper extremity strength for independent wheelchair transfers. Clients must learn ways to navigate various natural and built environments as well as how to problem solve for situations they might not have expected. This could involve pushing up and down different grade ramps, overcoming uneven thresholds, and negotiating difficult surfaces such as cobblestone or gravel. For a rehabilitation psychologist aiming to improve a client’s psychological functioning, this entails adjustment to disability and community reintegration. This could involve using cognitive-behavioral therapy to challenge self-defeating beliefs related to disability and replacing the negative thoughts with more adaptive and resilient beliefs to overcome the challenges of a disability and regain independence. However, the effectiveness of rehabilitation interventions are ultimately dependent on how the client interacts with the accessibility of the environment, which is mandated by accessibility laws. In our travels, we discovered how an inaccessible environment can impact a person’s well-being, emphasizing the importance of the ADA. Although the area of international rehabilitation research is limited, researchers have compared the social participation of people with spinal cord injury in countries such as the United States and Turkey (Dijkers, Yavuzer, Ergin, Weitzenkamp, & Whiteneck, 2002). Although the U.S. sample had more severe injury levels compared to the Turkish sample, the two samples were functioning at the same level based on the Functional Independence Measure (a tool to assess a person’s functional status in performing 18 activities of daily living; see Grey & Kennedy, 1993). Dijkers and colleagues suggested that the Turkish people always had some other person to do things for them, whereas in the United States people were more independent. They noted that in the typical Turkish house, the bathroom and kitchen are inaccessible because modifications are not covered by insurance. This is an example of how the environment in different cultures can impact on activities of daily living and social participation.

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Legislation such as the ADA not only conveys that society’s attitude toward people with disabilities should be one of inclusion and equality but also ensures that environments will be accessible and that equal opportunity will be provided in employment and education. These conditions are necessary for rehabilitation interventions to be successful. However, legislation alone does not guarantee that actions will be implemented in daily life (Satcher & Hendren, 1991). Implementation of these laws is contingent on the cooperation of government policy makers, employers, business owners, and service providers. The success of disability laws depends mainly on the actions and attitudes of individuals in society (Hernandez, Keys, Balcazar, & Drum, 1998). Rehabilitation professionals who want to achieve the goal of improving the lives of people with disabilities must also devote effort to understanding and influencing the attitudes toward people with disabilities held by those in society. Successful rehabilitation is not completed when a client leaves a hospital or rehabilitation center. Rehabilitation success is often measured by acceptance at work, inclusion into educational systems, and ability to resume one’s right as a citizen in the built and social environment. Thus, successful rehabilitation takes place in the community (Vilchinsky & Findler, 2004). The extent to which society is inclusive and enables people to fulfill their rehabilitation potential depends not just on the rehabilitation team but on other parts of society that have no commitment to the process of rehabilitation (e.g., the architect who designs the workplace and the employer who hires the person with a disability) (Vilchinsky & Findler, 2004). Thus, rehabilitation professionals must be active within their communities to influence members of society and advocate for clients. Disability legislation is only one component of the movement toward acceptance of people with disabilities. Education and public awareness of disability issues is also crucial, for both people with disabilities themselves and the general public. The National Organization on Disability (2002) found that in 1993 in the United States, only 40 percent of people with disabilities are aware of their rights, but that rate doubled to 80 percent in 2002. Although these statistics are promising, people with disabilities continue to lack awareness of their rights. When people with disabilities are unaware of their rights, they are more likely to accept violations. Increased public awareness of disability issues is also important, as education can impact attitudes. If more people understood the needs of people with disabilities, they may be less likely to abuse handicapped parking and more likely to make public buildings and services accessible. The success of disability laws depends mainly on the actions and attitudes of individuals in society who must enforce it by removing architectural and communication barriers and providing accommodations (Hernandez et al., 1998).

CONCLUSION Advances in medicine have enabled people to survive birth defects, chronic illness, injuries, and disabilities to live longer, often with lifelong impairments.


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People with disabilities are a growing worldwide population that will only continue to increase. Consequently, there have been many recent increases in disability legislation and increased awareness around the world. However, there is still much progress to be made in regard to full inclusion of people with disabilities into societies around the world. The ADA allows people with disabilities to enjoy equal opportunity rights to housing, employment, education, and public services. As a result, people with disabilities can be contributing members of mainstream society. Although the ADA has left some challenges and barriers unconquered, overall it has made America a more diverse, just, inclusive, and productive country. Some countries have been slow to follow the precedent set by the ADA and have not yet enacted and enforced similar legislation. Although approximately 40 countries have enacted a similar domestic disability discrimination law (Kanter, 2003), buildings, transportation, and attractions all over the world remain inaccessible, meaning that people with disabilities may not be a regular part of mainstream society in that country as they are in the United States. In the United States, the ADA and the disability rights laws before it are a crucial component of successful rehabilitation for people with disabilities. The independent living skills clients learn in physical and occupational therapy are only as useful as the accessibility of the environment in which people live. The hope of an independent and contributing lifestyle is contingent on equal opportunity policies. Research suggests that public awareness, legislation, and litigation should serve as interventions for the social disability model (Krahn, Putnam, Drum, & Powers, 2006). The need for further effort and action is summed up well by Brandt and Pope (1997): There is much question as to the vigor with which the ADA has been and will be enforced, but there is no question that if it is well enforced it will profoundly improve the prospects of people with disabling conditions for achieving a much fuller participation in society, in effect reducing the font of disability in work and every other domain of human activity. (p. 160)

Thus to improve the physical and psychological functioning of people with disabilities, rehabilitation professionals must not only be advocates of disability legislation but also educators on the role environment factors in determining a person’s ability status. There is an important relationship between disability rights law and the level of physical and psychological functioning people with disabilities can accomplish. Although this relationship has received little attention from the fields of international law, psychology, or rehabilitation, the leaders in these fields must work together to innovate and enforce legislature. Global communication on legislation, political strategies, disability advocacy, and rehabilitation will enhance the progress of disability rights in all countries. We must allow all countries to learn from the successes and failures of those countries where accessibility legislation has been implemented and tested. Thus global communication is essential to the progress of the disability rights movement, which will improve not only the lives of people with disabilities around the world but ultimately our whole society.

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NOTE The authors acknowledge the Baker and McKenzie Law Firm and Richard Pagano for their assistance in researching international disability rights laws.

REFERENCES Biolchini, M., Puglisi, L., & Baker & McKenzie. (2007). Disability laws in Italy. Milan. Brandt, E. N., & Pope, A. M. (Eds.). (1997). Enabling America: Assessing the role of rehabilitation science and engineering. Washington, DC: National Academies Press. Dijkers, M. P. J. M., Yavuzer, G., Ergin, S., Weitzenkamp, D., & Whiteneck, G. G. (2002). A tale of two countries: Environmental impacts on social participation after spinal cord injury. Spinal Cord, 40, 351–362. Grey, N., & Kennedy, P. (1993). The Functional Independence Measure: A comparative study of clinician and self ratings. Paraplegia, 31, 457–461. Hernandez, B., Keys, C., Balcazar, F., & Drum, C. (1998). Construction and validation of the Disability Rights Attitude Scale: Assessing attitudes toward the Americans with Disabilities Act (ADA). Rehabilitation Psychology, 43, 203–218. Herr, S. S, Ito, A., & Weber, M. C. (1999). Is the Americans with Disabilities Act exportable? Disability rights in international perspective. American Society of International Law. Proceedings of the Annual Meeting, pp. 332–341. Imrie, R. (1998). Oppression, disability and access in the built environment. In T. Shakespeare (Ed.), The disability reader (pp. 129–146). London: Cassell. Kanter, A. S. (2003). The globalization of disability rights law. Syracuse Journal of International Law and Commerce, 30, 241–269. Kokona, A., Dryllerakis & Associates. (2007). Accessibility of people with disabilities according to Greek Legislation. Athens: Greece. Krahn, G. L., Putnam, M., Drum, C. E., & Powers, L. (2006). Disabilities and health. Journal of Disability Policy Studies, 17, 18–28. Lerner, W., & Belts, H. (2005, September). Striving for equity. Modern Healthcare, 20(20). Retrieved January 18, 2008, from Academic Search Elite database. National Organization on Disability. (2002, July). Awareness of the ADA is at an all-time high. Retrieved June 14, 2008, from www.nod.org/index.cfm? fuseaction=Feature.showFeature&FeatureID=878. Pierce, L. L. (1998). Barriers to access: Frustrations of people who use a wheelchair for full-time mobility. Rehabilitation Nursing, 23, 120–125. Satcher, J., & Hendren, G. (1991). Acceptance of the Americans with Disabilities Act of 1990 by persons preparing to enter the business field. Journal of Applied Rehabilitation Counseling, 22, 15–18. Vilchinsky, N., & Findler, L. (2004). Attitudes toward Israel’s Equal Rights for People with Disabilities Law: A multiperspective approach. Rehabilitation Psychology, 49, 309–316. White, G. W., Paine-Andrews, A. L., Mathews, R.M. , & Fawcett, S. B. (1995). Home access modifications: Their effects on community visits of people with physical disabilities. Journal of Applied Behavioral Analysis, 28, 457–463.

CHAPTER 16

Disability Policy—A Canadian Perspective: A Human Rights Approach to Providing Supports and Services Cheryl L. Crocker

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anadian social policy is heavily influenced by public attitudes and the history of providing supports and services to those who are seen to be vulnerable. Specific legislation and policy that affects Canadians with disabilities is situated in larger social policy frameworks as well as economic, financial, and accountability requirements. Disability policy is further influenced by the disability community itself; influence that ebbs and flows depending on the power of the disability community at the time of review and revision. The intent of this chapter is to draw on the experiences of policy makers and the disability community to illustrate the foundations and current positioning of Canadian disability policy. Canadian disability policy may be considered to be more progressive than other countries, yet these policies have not created a panacea for those who have day-to-day challenges in education, health care, employment, social services, income security, or activities of daily living. This chapter identifies those most affected by disability policy, Canadians who have a disability, and outlines key factors that have influenced the development of disability policy. Key legislation, policy initiatives, and judicial interpretations are presented. The impact that social values and public perceptions have on disability policy are highlighted.

KEY POLICY CONSIDERATIONS Disability theory and practice are guided by values and ideology (Albrecht, 1992). Values are a set of socially shared ideas about what is right, good,

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and desirable. Ideology is an interrelated set of beliefs that explains how social and political worlds work and further prescribes how those worlds ought to operate. Disability rights and related policy surrounding individuals with disabilities have emerged and evolved over the past 30 years. Historical and traditional understandings of disability are constantly being challenged. Awareness of social issues and barriers in all aspects of life continue to improve. The ways in which the needs of individuals with disabilities have been addressed has also shifted dramatically over the past 50 years. It is important to understand what policy is to understand the place that policy holds in directing how individuals with disabilities are supported to lead full and inclusive lives. Policy is considered to be a statement or statements that are influenced by a number of stakeholders who may have competing interests and who may work for rival outcomes. Policy is also a discourse that allows social issues to be revealed, underlying causes to be examined and assumptions to be evaluated. Applied to the issue at hand, any policy that affects those with disabilities ought to reflect the input of a wide range of stakeholders including those in the disability community, policy makers, and citizens. The social issues that are revealed in policy include but are not limited to public perceptions on issues of education, health, employment, and income support. The important component in any policy lies in the notion that there is ample opportunity for debate and discussion prior to policy being implemented. Debate and discussion is critical in exposing the variety of opinions and finding potential resolutions to the issues that face individuals with disabilities. Because social policy is a dynamic concept that is reflective of social values, norms, and priorities, the development and revision of any policy requires consideration of these factors.

MODELS OF POLICY MAKING Wharf and McKenzie (1998) outlined a number of policy making models evident in Canadian social policy and labeled these models as generic, rational, incremental, mixed scanning, value criteria, and garbage can. The rational model relies almost exclusively on quantifiable data. The incremental model is predicated on the notion that change is most likely to occur in steps. The mixed scanning model integrates the rational and incremental approaches. The value criteria model relies on the explicit consideration and influence of values. Finally, the garbage can model attempts to consider all factors and issues and create a policy to address a wide range of concerns. These models are contextualized as “an exercise of power related to the political process, relative importance of politics varies considerably from one situation to another” (Wharf & McKenzie, 1998, p. 23). In considering which model(s) to use, it is important to look to where power resides along with the specifics of the situation. For example, a value criteria model may not be the best to use when there are extreme positions and enormous value differences in play; it may be more appropriate to use a rational model instead. Wharf and McKenzie suggested that one model may never be used

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exclusively or in its entirety, but elements from multiple models are obvious in the policy development process. These models of policy development are evident in the legislation and policy initiatives that have become part of the fabric of Canadian disability policy. As one looks at how disability policy has evolved over the past 30 years, there is no one model that emerges as a policy development model of choice. Despite this mixed approach, the current social policy in Canada has emerged as strongly rooted in social inclusion, equality, rights, and participation for all citizens. This approach has positioned Canada as an international leader in the disability field—a position that would not be possible without leadership from the disability community. Therefore, it is helpful to briefly examine what role the disability rights movement has played in the creation of disability policy in Canada.

CANADIANS WITH DISABILITIES The Participation and Activity Limitation Survey (PALS) is Canada’s principal national survey focusing on people with disabilities. This survey includes detailed questions designed to identify the nature and severity of disability. Severity is based on extent and degree of activity limitations concerning 10 types of disabilities. Information is also gathered about the need for and access to assistance, education, employment, income, housing, transportation, and other supports. In 2006, 4.4 million Canadians living in households reported having an activity limitation yielding an overall disability rate of 14.3 percent. The disability rate increases steadily with age. Some specific information of interest from the survey included: • • • •

Children aged 0 to 14, 3.7 percent reported a disability. Adults aged 15 to 64, 11.5 percent reported a disability. Persons aged 65 and over, 43.4 percent reported a disability. Adults aged 75 and over, 56.3 percent reported having an activity limitation.

It is interesting to note the rates of disabilities rose gradually within the working age population. Specific information included: • • • • •

Those aged 15–24, 4.7 percent reported a disability. Those aged 25–34, 6.1 percent reported a disability. Those aged 35–44, 9.6 percent reported a disability. Those aged 45–54, 15.1 percent reported a disability. Those aged 55–64, 22.8 percent reported a disability.1

JURISDICTIONAL ISSUES In Canada, the matter of disability is complicated by the fact that jurisdiction, and the consequent responsibility to respond, is not always clear.

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The government of Canada, formed in 1887, was created based on a federal system, consisting of a central government and provinces and territories. Each body of government, central and provincial/territorial, has certain powers and areas of jurisdiction. The central government has responsibility in areas of defense, criminal law, employment insurance, postal service, census, copyrights, trade regulation, external relations, money and banking, transportation, citizenship, and Indian affairs. Provinces/territories have responsibility in the areas of property and civil rights, administration of justice, natural resources and the environment, education, health, and welfare. Provinces/territories also have the ability to create, modify, and eliminate municipal governments. Although municipal responsibilities vary from location to location, they generally include water, sewage, waste collection, public transit, land use planning, libraries, emergency services, animal control, and economic development. Provinces/territories have jurisdiction over those areas that are typically considered in the realm of disability policy; health, education, social, and income supports. These areas are typically the most expensive to govern. Even though the federal government has the highest level of fiscal power and the most access to financial resources through taxation, the provinces have the more costly responsibility for delivery of service. However, the federal government has created a national agenda around disability that provinces/territories are obliged to follow.

DISABILITY RIGHTS MOVEMENT Bickenbach (2001) insisted that policy must respond to the actual lived experience of people with disabilities. He suggested that a shift in perspective was demanded and that policy should be approached from the view of those who experience it. Wharf and McKenzie (1998) argued that policy development should include those who are most affected by the policy. Joiner (2006) argued that citizen engagement might offer some innovative approaches in developing disability policy. However, it may be premature to expect transformational change from this mechanism as not all disability groups are equally well organized to exert political influence. Therefore, it is reasonable to expect that the influence of disability groups should increase over time. Canada has long history of protecting the rights of cultural groups. The disability rights movement in Canada developed, at least in part, because of a sense of collectivity. Canadian values and culture play a very strong role in this collective identity. Stone (2005) suggested that values form the basis for our behaviors and beliefs while culture serves as a system of the rules or guidelines for behavior when interacting with each other. For Canadians with disabilities, this has meant the presence of the same fundamental freedoms, rights, and responsibilities as any other citizen. Influential social movements, such as the disability rights movement, emerge when the current system of beliefs need to be challenged and replaced by a new set of values and beliefs. In other words, social movements challenge the status quo, create awareness about injustices in policies, and give rise to a new


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way of looking at an issue. Although there are some similarities with other countries, Canada does present a somewhat unique disability rights movement history. This rich history has been critical in positioning the current legislation and policy that Canada enjoys. A brief historical description follows and is specifically intended to highlight those organizations that have been instrumental in influencing policy makers.

Waves of Development Neufeldt (2003b) described the disability movement as having developed in three waves. The first wave occurred from the late 18th century to the 1940s and was characterized by the development of charitable groups and schools for those with sensory disabilities. The Canadian National Institute for the Blind, Shriners, Lions, and Rotary groups are examples of this first wave. The Ontario Society for Crippled Children is an example of an advocacy group established in this first wave. The second wave developed during the 1940s to the 1960s and included organizations such as the Canadian Association for the Deaf (1940) and the Canadian Paraplegic Association (1945). Education and technology were on the upswing, and soldiers, often with physical injury and trauma, created a renewed interest in charity and human rights. In 1948, the Canadian Association for Community Living was established by parents of children with mental retardation (the popular language of the time) in an effort to eradicate institutions and establish community based services. This organization was and continues to be a leader in shaping policy development for individuals with disabilities. The third wave began in the 1970s and was a great time of change in both public and social policy as well as recognition of both civil and legal rights for people with disabilities. The three primary factors influencing change, described by Neufeldt (2003b), included aging systems of support, resistance to pity and sickness images of disability, and the disability rights revolution. New groups emerged during this prolific period of time. The Coalition of Provincial Organizations of the Handicapped was established in 1973. This group later became known as the Council of Canadians with Disabilities (CCD) and was led by people with disabilities. This organization, unique for the time, embraced all disabilities rather than a single group. Independent living centers were also established during this period. The Canadian Association for Independent Living Centers began in 1986 with a vision of not only providing support for moving from institutions to community but of supporting self-advocacy. Their intention continues to be to ensure that people with disabilities are empowered in decision making in collaboration and cooperation with policy makers and governments (Phillips, 2001). Disability organizations have and will continue to play a vital role in disability policy.

SERVICE DELIVERY INFLUENCES At the same time as disability groups were forming and becoming influential, services were emerging to address the needs of individuals with

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disabilities and to support life in community settings. The development of services occurred in phases, with each phase building on the knowledge and experience of the other.

Phases of Development Three phases are evident when looking at the development of services for individuals with disabilities; the “era of institutional reform” (1967–1975), the “era of deinstitutionalization” (1976–1980), and the “era of community membership” (Schalock, 1994, p. 125). These eras did not develop in isolation, but rather, were influenced by social and ideological shifts. For every shift, there was a parallel shift in social values and the way that individuals with disabilities were seen by other citizens. Prior to the era of institutional reform, institutions for disabled persons were developed using the same management model as industry. Typically termed the “industrial era” (1950s–1960s), organizational structures established during this time were comprised of hierarchies with top-down power structures and hegemonic regulations. Although this organizational model was dominant and successful in industry, it was not particularly adaptable nor did it promote innovation in thinking about what might be possible for individuals with disabilities. Institutional care for individuals with disabilities was the first choice option and seen as the most appropriate. The primary concern was safety and protection of individuals from the expectations of society and in protecting society from those who were considered to be deviant. The end of this era was hastened by the advocacy efforts of disability rights groups as well as parent organizations. Both groups were able to see the limitations of institutional care and the possibilities that community life might bring. During the era of institutional reform, there was growing recognition of the negative characteristics of institutions. The issue was not how institutions developed or how they evolved into being the service of choice; instead, the standards that guided the operations of these institutions were questioned. Efforts were put into protecting individuals from neglect and abuse and enhancing the conditions of institutions (Lawlor & York, 2007). The era of deinstitutionalization began with increasing discontentment and criticisms of institutions. In the 1970s, services were relocated to the community. Although the traditional institutional setting was abandoned, the newer community settings continued to be based on the institutional model (Schalock, Baker, & Croser, 2002, p. 72). As a result, many of the same detrimental institutional practices such as social and physical isolation, power imbalance, dependency, and regimentation continued within these new settings (Emerson & Pretty, 1987, p. 153). Services and programs were primarily located in facilities, and individuals were required to fit the service rather than the service responding to the strengths and needs of the individual. Although societal understanding about individuals with disabilities increased, changes in practice were slow to be adopted. The final era, which is still coalescing, was strongly influenced by the philosophy of normalization (now known as social role valorization) (Wolfensberger, 1972). Services operating under a facility-centered paradigm have


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been challenged to shift their philosophies and approaches to reflect individualized and person-centered practices. Current practice strives to ensure that individuals receiving services are directing those services and are in control of where they live, work, and recreate. A major impact has been the notion of empowerment where the voice of the consumer has grown in strength and power in the area of service delivery. Family members and allies have joined in this movement. This next logical step, where one truly determines her or his quality of life—directing one’s own supports and services, is gaining momentum (Verdugo, Schalock, Keith, & Stancliffe, 2005).

POLICY DISCOURSE Twenty years ago, Fulcher (1989) provided a theory of disability by framing it as a disputed category which is struggled over in social practices in a range of arenas—both procedural and political. Four main discourses on disability—medical, charity, lay, and rights—were seen to influence both thinking and practice around disability. Medical and charity discourse results from a deviance and individual pathology framework. Policy written from this perspective positions disability as central to the individual based on a assumption that disability needs to be fixed or overcome. Services emanating from this perspective will demonstrate a sense of benevolence. A lay discourse is the logical outcome of an environmental approach to disability. From this perspective, limitations are first solved by looking at how the situation or environment is handicapping one’s ability to engage in typical activities. A rights discourse is based on the sense that basic civil rights are paramount and social inequities can be overcome by supporting people to direct their own beliefs and behaviors. Fulcher further suggested that a fifth, more corporate discourse is emerging. This discourse has a theme of “managing disability” with an institutional base in both government and the private sector (Fulcher, 1989, p. 26). Fulcher saw these discourses as informing legislation and practice. Two other early frameworks have informed policy and practice, namely, the deviance perspective and the conflict perspective (Albrecht, 1992). The deviance perspective views people with disabilities as deviant members of society, whereas the conflict perspective, views people with disabilities as members of a minority group. As Albrecht (1992) noted: “Studies . . . usually take one of these two theoretical positions as their starting point for analysis or react to one of these frameworks” (p. 71). Disability as deviance has roots both in structural-functional and in symbolic interactions theory. Minority status is based on conflict theory, in which persons with disabilities are conceptualized as members of a subgroup in conflict with traditional society and its power brokers. Another framework more recently views disability on the basis of either individual or social pathology (Rioux & Samson, 2006). Each formulation is based on a set of assumptions about the nature and source of disability and, consequently, suggests the most appropriate response. Framing disability as an individual pathology includes two approaches: biomedical and functional. A biomedical approach presumes disability to be

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caused by a medical or physical condition that is preventable or could be ameliorated through medical, biological, or genetic intervention. A functional approach interprets problems experienced by people with disabilities as a result of functional incapacity resulting from an individual impairment. Framing disability as a social pathology also results in two approaches: environmental and rights-outcome. An environmental approach views personal abilities and limitations as a function of the interaction between the individual and the environment. A rights outcome approach is based on the notion that disability has social causes and is a consequence of how society is organized and the relationship of the individual to that society. Although these frameworks are useful, they should not be seen as allinclusive. Oliver (1996) discussed model limitations, questioning not the model itself, but rather the way it is used. “It must be remembered that models are merely ways of helping us to understand the world or the bits of it under scrutiny . . . not to explain but to aid understanding” (p. 40). As discussed, there are numerous approaches to policy analysis and the associated discourse. Text and frameworks of disability assist in understanding the Canadian approach to disability policy (Titchkosky, 2006). The words that are used to frame a policy will depict both the individual with a disability and the intended outcome of the policy in a certain way.

INTERNATIONAL INFLUENCES ON CANADIAN DISABILITY POLICY Stienstra and Wight-Felske (2003) noted that the Canadian “federal government’s disability agenda . . . squarely places disability within its human rights foreign policy” (p. 349). International legislation and declarations have influenced Canada’s view of disability. Legislation, internationally and nationally, exists to acknowledge and guarantee the rights of people with disabilities. Increasingly, efforts have been made to coordinate legislation and policy, previously developed in isolation, to achieve a higher degree of congruence. The ultimate objective is to ensure that people with disabilities are able to benefit from the myriad of protections in place. Most international conventions, declarations, programs, and rules identify fundamental human rights considered necessary prior and essential to law. Most international human rights instruments (conventions, documents, and declarations) are based on three central principles of freedom, equality, and dignity. The Declaration on the Rights of Disabled Persons was proclaimed by the United Nations in 1975. This declaration, welcomed by the disability community, discussed rights, freedoms, entitlements, and protections. Subsequently, in 1991, the United Nations declared the International Year of the Disabled Person. More recently, the Standard Rules on the Equalization of Opportunities for Persons with Disabilities have contributed significantly to changing the analysis of the situation of individuals with disabilities to one based on a human rights perspective. The Rules clearly define equalization of opportunities as the process through which the various systems of society and the environment, such


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as services, activities, information, and documentation, are made available to all (Independent Living Institute, 1993). Kallen (1989) used a three-tiered approach to identify critical international and North American instruments (documents and declarations) and legislation affecting Canadians with disabilities: In the Canadian context, the judicial dictates for human rights provide a threetiered system of norms of conduct governing human relations within the state. International human rights instruments provide the global standards to which all state legislation must conform. Constitutional rules, under the Charter of Rights and Freedoms (CRF) and related constitutional provisions, provide the national standard to which all statutory laws (federal and provincial humanrights codes as well as laws of general applicability) should conform. (p. 5)

Kallen (1989) stated that international law provides the norms of conduct or moral guidelines governing the relationship of state and world organization in the international community. Some scholars suggested that it is not law at all but a set of guiding moral principles to which laws at every level should conform. “In Canada, international law is not part of the law of the land but must be translated into Canadian law by the enactment of appropriate statutes. Ratification of international treaties and conventions by Canada implies only an expression of intent to comply or enforce unless statutes are enacted” (Kallen, 1989, pp. 3–4). Canada is a signatory to the UN Declaration on the Rights of the Disabled. As such, Canada is obligated to consider and be consistent with international law. To date, this approach has served the county well and reinforced its position as a leader in recognizing and supporting individuals with disabilities. Enns and Neufeldt (2003) discussed Canadian influence. “Certainly within Canada, the respect for the rule of law, of a democratic process in decision making and the concept of a just society is in evidence . . . the principal of participation has drawn the attention of many people at the United Nations to talk about the Canadian model” (p. 349).

CANADIAN LEGISLATION Canada Act In 1982, the Canada Act replaced the British North American Act as the basic constitutional law of Canada (Stainton, 1994). The Canadian Charter of Rights and Freedoms was included in this act. The charter guaranteed equal protection and benefit of the law, freedom of movement and association, and protection from harm and cruel and unusual punishment. The charter was specifically constructed to address discrimination and stereotyping toward people with certain characteristics (Heavin, 2001) and is unique because it includes many marginalized groups. Phillips (2001) indicated that the UN Declaration on the Rights of Disabled Persons, along with the advocacy of the CCD, was instrumental in successfully advocating for the inclusion of disability as an identified and protected group in the charter. Although disability was not initially one of the

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enumerated groups, Section 15 of the charter, labeled the equality clause, came into force in 1985. It included specific protection to individuals with mental or physical disabilities. Section 15 (1), the nondiscrimination provision, guaranteed the principle of standard treatment. Section 15 (2), referred to as the notwithstanding clause, guarantees the principle of equivalent treatment, where necessary (Kallen, 1989). In the case of individuals with disabilities, Kallen noted standard (equal) treatment is often insufficient; equivalent (compensatory) treatment is often required. Section 15 (2) allows for the establishment of programs and services designed to ameliorate the life conditions of individuals with disabilities.

Human Rights Legislation The Canadian Human Rights Act provides that all individuals should have an opportunity equal with other individuals to make for themselves the lives that they are able and wish to have and to have their needs accommodated, consistent with their duties and obligations as members of society, without being hindered in or prevented from doing so by discriminatory practices based on race, national or ethnic origin, color, religion, age, sex, sexual orientation, marital status, family status, disability, or conviction for an offense for which a pardon has been granted. It is an offense for any employer or service provider that falls within federal jurisdiction to make distinctions based on prohibited grounds. The Canadian Human Rights Commission is responsible for the administration of the act. The commission ensures that principles of equal opportunity and nondiscrimination are followed in all areas of federal jurisdiction. Human rights legislation is also in place in every province and territory with corresponding protections. For example, Alberta’s legislation, the Human Rights, Citizenship and Multiculturalism Act, recognizes, as a fundamental principle and as a matter of public policy, that all persons are equal in dignity, rights and responsibilities without regard to race, religious beliefs, color, gender, physical disability, mental disability, age, ancestry, place of origin, marital status, source of income, or family status. The act further establishes the Alberta Human Rights and Citizenship Commission, an independent agency, to carry out functions under the act. The rights and protections afforded individuals with a disability are notable. However, human rights commissions in Canada deal with more cases of discrimination against people with disabilities than with any other single complaint, and the volume of these complaints continues to rise. Finkelstein and Stuart (1996) expressed the concern: The danger is that the “freedoms” and “rights” won for this group of people will be of no real material benefit to them. In other words, the structures and culture which create and maintain disabling culture will not be touched. Disability will continue to be seen as something carried with the individual. The state will continue to tinker and improve the welfare system to compensate for their disability. Power over resources will be maintained by the professional. Disability will continue to reside outside of the political sphere. (p. 175)


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Employment Equity A key piece of federal legislation is the Employment Equity Act. The purpose of this act is to achieve equality in the workplace so that no person is denied employment opportunities or benefits for reasons unrelated to ability. It seeks to correct the conditions of disadvantage that are experienced by women, aboriginals, persons with disabilities, and visible minorities. The Employment Equity Act requires special measures and accommodation of differences for those designated groups.

Transfer Grants Federal transfer grants to the provinces have long been an important aspect of disability supports (Prince, 2006). These arrangements were first formalized with the Vocational Rehabilitation of Disabled Persons. This program ran from the 1960s to the late 1990s, when it was replaced by the Employability Assistance for Persons with Disabilities. This program was replaced in 2004 by the Multilateral Framework on Labour Market Agreements for Persons with Disabilities. These mechanisms are politically significant and reinforce the values that Canadians hold and their belief that the federal government has a role in disability services and supports (Prince, 2006). The Multilateral Framework was seen as a solid platform for a new national strategy on disability supports that go beyond employment to everyday living and education (Prince, 2006).

FEDERAL POLICY INITIATIVES The Canadian Charter of Rights and Freedoms, along with key legislation, signaled the need to create a national agenda and approach to addressing disability issues. As a result, a number of key policy initiatives were developed.

Obstacles A key initial action was the creation of the Special Parliamentary Committee on the Disabled. This committee went on to publish Obstacles, a report that brought international attention to the lived experiences of individuals with disabilities. This report is still considered to be foundational in positioning disability issues in the realm of citizenship and human rights (Neufeldt, 2003a).

Will to Act: Equal Citizenship for Canadians with Disabilities In 1996, the Will to Act: Equal Citizenship for Canadians with Disabilities included recommendations on the role of the federal government in disability policy. The role included the notion that • legislation is bound to make distinctions and not all distinctions are discriminatory;

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• only distinctions that impose burdens, obligations, or disadvantages on individuals who are members of groups that are already disadvantaged should be studied and considered for removal; • where people require different treatments to achieve equality, the failure to provide it can impose burdens, obligations, and disadvantages; and • affirmative or proactive measures may be needed to remove some barriers and eliminate systemic discrimination.

Canadians with Disabilities Act The Canadians with Disabilities Act was recommended as a complementary measure to make the rest of the human rights legislation and government structures work for persons with disabilities. Advocacy groups sometimes equated this recommended act to the Americans with Disabilities Act. Further, a “disability lens” was recommended by use for all government department introducing or reviewing legislation. The intent of the lens was to assess any policy, program, or action and determine what the impact would be on individuals with disabilities. Although the concept of a disability lens has found favor and is used in some provinces, the Canadians with Disabilities Act did not proceed.

In Unison: A Canadian Approach to Disability Issues The government of Canada released a report in 1998 titled In Unison: A Canadian Approach to Disability Issues (Government of Canada, 1998). This document described the vision and long-term directions aimed at promoting the full citizenship of people with disabilities in all aspects of Canadian society. Endorsed by federal, provincial, and territorial ministers, In Unison particularly focused attention on three major areas of employment, income, and disability supports. The approach outlined a commitment to work toward the full participation and inclusion of persons with disabilities, engaging the disability community and all sectors of Canadian society in action on disability issues coupled with a recognition that achieving real progress requires shared responsibility and a commitment to action with clear outcomes.

Office for Disability Issues One of the ways that the Canadian government saw fit to sustaining such a commitment was by establishing the Office for Disability Issues (ODI). This office was to be the focal point within the government of Canada to ensure that the ideals of In Unison were achieved. ODI was to be responsible for the delivery and administration of programs and the development of networks with and between national disability organizations, provinces, and territories and the research community. To facilitate this, ODI established two divisions—one to look at strategic planning and corporate issues and the other to look at disability policy.


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Advancing the Inclusion of Persons with Disabilities In 2004, the federal government released their fourth comprehensive report, titled Advancing the Inclusion of Persons with Disabilities. Yet again, this report recommended a National Disability Act to improve accessibility and inclusion for all Canadians with disabilities. The government of Canada has again pledged to engage concerned stakeholders, including Canadians with disabilities, in gathering information and eventually developing a proposal for this act. The areas of reported in this document include human rights, accessibility, and disability supports; learning, skills, and employment; income, income supports, and tax measures; and finally health and well-being. This report also held an inventory on federal programs and initiatives related to disability as well as links to information about provincial and territorial programs.

Planned Lifetime Advocacy Network Planned Lifetime Advocacy Network, a not-for-profit charity created by and for families who have a relative with a disability, successfully lobbied for the creation of a Registered Disability Saving Plan (RDSP) commencing in 2008. Contributions will not be tax-deductible but will have both modest and major matching contributions by the federal government. This plan will only be available to families whose child qualifies for the disability tax credit or disability amount in the Income Tax Act. The child must be approved by Canada Revenue Agency as being “markedly restricted” in the activities of daily living in one or more of several ways. This plan, which is very similar to the already established Registered Education Savings Plan, will allow contributions to the RDSP by family and friends of a person with marked disabilities. These contributions will not be tax-deductible by the contributor, but the investment earnings in the plan will be tax-deferred until withdrawal. The lifetime RDSP contributions will have a limit of C$200,000. Following this limited review of legislation and key policy initiatives, one is left with a sense of good intention, righteous thoughts, and a strong desire to do what is right. After all, Canadian policy is premised on very noble principles, including: • • • •

all individuals have the right to equal protection before and under the law, all individuals have the right to be protected from discrimination, all individuals have the right to full and equal participation, and all individuals have the right to inclusion in society.

One could go on, yet there is a strong sense of repetition in the legislation, policy, and position papers and documents that have been released by the federal government over the past two decades. Repetition usually indicates that intentions were not achieved and identified outcomes were not met. Prince (2006) called Canadian disability policy (still) a hit-and-miss affair. In his review of Canadian disability policy, Prince reviewed the history and

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concluded that “we have been here before in terms of the problems identified and the promises made” (p. 59). This circular process of analysis, advocacy and evaluation, followed by the creation of new reports, documents and directions was called the déjà vu discourse of disability” (p. 66). Prince (2006) specifically looked at the time period between 1981 and 2001 and noted two major themes of frustration and disappointment running through the work of advocacy groups, community service organizations, and legislative reports about Canadian disability policy. He concluded that fundamental reform is essential to achieve the vision of full citizenship and inclusion, but instead we continue to tinker. As long as we only tinker, we will not achieve the visions that have been so eloquently articulated in policy documents. Clearly, there is a need to consolidate and implement the good intentions and enforce the existing legislation that is there to guarantee that no Canadian will experience discrimination. Unless some congruence is brought to the multitude of legislated protections, initiatives, and directives, real benefits to individuals may remain obscure. Proclamations will likely continue but will do little to significantly improve the overall situation for people with disabilities.

JUDICIAL INFLUENCES Although litigation is not prevalent in Canada, a number of cases are noteworthy in that the decisions are affirming of the rights of individuals with disabilities. These cases were brought forward arguing that individual rights and freedoms, as guaranteed by the Canadian Charter of Rights and Freedoms, were compromised. Five particular cases and the consequent decision illustrate the value of the charter. In 1982, the Ontario District Court denied an application by Justin Clark’s parents to have him declared mentally incompetent in an effort to thwart his desire to leave the institution where he had lived for 18 years. Justin subsequently moved into an alternate living situation in the community. The Supreme Court of British Columbia determined that a six-year-old boy with Down syndrome had the right to life-sustaining medical treatment, a treatment to which his parents had refused consent (Kluge, 1983). The boy became a ward of the government of British Columbia and was treated. The Supreme Court of Canada in E. (Mrs.) v. Eve (1986) ruled that people who have an intellectual disability cannot be required to undergo nontherapeutic sterilization authorized by a third party. The decision stated that such an intrusion into the rights of a person could never be in his or her best interests. In 1989, the Supreme Court of Canada in Andrews v. Law Society of British Columbia (1 S.C.R. 143) again affirmed the rights of people with disabilities, deciding that the principle of equality does not imply similar treatment but it may require treating people differently to achieve equality. This was a landmark decision in that it affirmed Section 15 (2) of the charter. Community living groups across the country heralded a 1996 decision to compensate Leilani Muir for wrongful and forced sterilization. Leilani,


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along with hundreds of others who were institutionalized and sterilized, were financially compensated. A 1997 case (Re: Eaton and Brant County Board of Education) in Ontario, in which a child with an intellectual disability was denied the choice of attending the neighborhood school, has been declared an important charter case. The decision indicated that this denial was not an issue of pedagogical theory or right to an education but a denial of the equality right found in the charter.

CONCLUSION The right Honorable Beverley McLaughlin (2002) gave a speech about the Canadian Charter of Rights and Freedoms and how it reflects the values of Canadian identity. She remarked: A . . . Canadian characteristic recognized by the Charter and the 1982 Constitution Act is our commitment to pluralism and the protection of group rights like . . . language rights, and aboriginal rights. The Charter, not by magic nor by accident but through the nation-affirming process that brought it into being and nurtured it over the past two decades, captures the essence of what we hold dear as a people: Respect for individual rights; respect for the collective interest and harmony between individual freedom and the greater good of all; respect for pluralism and a commitment to the fundamental equality of each and every one of us, religion, gender or ability. The result was a document that mirrored the distinctive Canadian values of respectful tolerance, pluralism and the interlocking rights and responsibilities of the individual and the state. (p. 2)

These values of collectivism, collaboration, and tolerance have influenced the approach that Canada has taken in developing disability policy. Ignatieff (2002) argued that the Canadian political climate is more liberal and has a social democratic focus. Multiculturalism and diversity are values that are traditionally associated with Canada. The historical influences of cultural group rights have led to a distinctive human rights culture (Ignatieff, 2002). The Canadian social justice perspective means that attention is paid to social participation structures along with rights of the individual. This rights culture emphasizes both individual and group rights. A social perspective allows for an environment that fosters equity with a view to working toward inclusion of all citizens. The commitment to the participation of citizens in government to develop policies and program directions is solid. Canada’s rights culture emphasizes group rights along with individual rights. Disability policy in Canada has a history of respect for the rule of law. The collective Canadian understanding and of disability and the need for a societal response to disability has resulted in proactive responses from the federal and provincial/territorial governments. Active critique, along with ongoing review and revision of policy, is invited in an effort to avoid complacency. Legislation and policy that affects Canadians with disabilities is an integral part of the fabric of Canadian social policy and serves as a model for the international community.

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NOTE 1. Data retrieved June 28, 2008, from www.statcan.ca/english/freepub/89-628XIE/2007002/prevalence-en.htm.

REFERENCES Albrecht, G. (1992). The disability business: Rehabilitation in America. Newbury Park, CA: Sage. Bickenbach, J. E. (2001). Disability, human rights law and policy. In G. L. Albrecht, K. D. Seelman, & M. Bury (Eds.), Handbook of disability studies (pp. 565–584). Thousand Oaks, CA: Sage. Emerson, E., & Pretty, G. (1987). Enhancing the social relevance of evaluation practice. Disability, Handicap & Society, 2(2), 151–162. Enns, H., & Neufeldt, A. (Eds.). (2003). In pursuit of equal participation: Canada and disability at home and abroad. Concord, ON: Captus Press. Finkelstein, V., & Stuart, O. (1996). Developing new services. In G. Hales (Ed.), Beyond disability: Towards an enabling society (pp. 170–187). London: Sage. Fulcher, G. (1989). Disabling policies? A comparative approach to education policy and disability. Philadelphia: Falmer Press, Taylor & Francis. Government of Canada. (1998). In unison: A Canadian approach to disability issues. Retrieved September 13, 2007, from www.unionsociale.ca/pwd/unison/ unison_e.html. Heavin, H. (2001). Human rights in R. V. Latimer and their significance for disabled Canadians. Saskatchewan Law Review, 64, 613–627. Ignatieff, M. (2002). The rights revolution. Toronto: House of Anansi Press. Independent Living Institute. (1993). Standard rules on the equalization of opportunities for persons with disabilities. Retrieved June 13, 2008, from www.independentliving .org/standardrules/StandardRules1.html. Joiner, I. (2006). Perhaps not yet: Policy making through citizen engagement. In A. McColl, & L. Jongbloed. (Eds). Disability and social policy in Canada (2nd ed., pp. 148–159). Concord, ON: Captus Press. Kallen, E. (1989). Label me human: Minority rights of stigmatized Canadians. Toronto: University of Toronto Press. Kluge, E. H. (1983). In the matter of Stephen Dawson: Right v. duty of health care. Canadian Medical Association Journal, 129(8), 815–818. Lawlor, D., & York, M. (2007). Assessing goal attainment for quality improvement. Journal of Intellectual Disabilities, 11(3), 241–255. McLaughlin, B. (2002). Coming of age: Canadian nationhood and the charter. A speech given to the Supreme Court of Canada. Retrieved November 15, 2007, from www.scc-csc.gc.ca/AboutCourt/judges/speeches/charter_e.asp. Neufeldt, A. H. (2003a). Disability in Canada: A historical perspective. In H. Enns & A. Neufeldt (Eds.), In pursuit of equal participation, Canada and disability at home and abroad (pp. 22–79). Concord, ON: Captus Press. Neufeldt, A. (2003b). The growth and evolution of disability in Canada. In D. Stienstra & A. Wight-Felske (Eds.), Making equality: History of advocacy and persons with disabilities in Canada (pp. 11–32).Concord, ON: Captus Press. Oliver, M. (1996). Understanding disability: From theory to practice. London: Macmillan. Phillips, C. (2001). Steering your own ship: The growth of individual advocacy within the Canadian Association of Independent Living Center. In D. Stienstra &


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A. Wight-Felske (Eds.), Making equality: History of advocacy and persons with disabilities in Canada (pp. 197–220). Concord, ON: Captus Press. Prince, M. (2006). A national strategy for disability supports: Where is the government of Canada in this social project? In A. McColl & L. Jongbloed (Eds.), Disability and social policy in Canada, 2nd ed. Concord, ON: Captus Press. Rioux, M., & Samson, R. (2006). Trends impacting disability: National and international perspectives. In A. McColl & L. Jongbloed (Eds.), Disability and social policy in Canada, 2nd ed. (pp. 112–142). Concord, ON: Captus Press. Schalock, R. (1994). Quality of life, quality enhancement and quality assurance: Implications for program planning and evaluation in the field of mental retardation and developmental disabilities. Evaluation and Program Planning, 17(2), 121–131. Schalock, R., Baker, P., & Croser, M. (Eds.). (2002). Embarking on a new century. Washington, DC: American Association on Mental Retardation. Stainton, T. (1994). Autonomy and social policy: Rights, mental handicap and community care. Aldershot, UK: Avebury. Stienstra, D., & Wight-Felske, A. (Eds.). (2003). Making equality: History of advocacy and persons with disabilities in Canada. Concord, ON: Captus Press. Stone, J. H. (2005). Culture and disability. Thousand Oaks, CA: Sage. Titchkosky, T. (2006). Policy, disability, reciprocity? In A. McColl & L. Jongbloed (Eds.), Disability and social policy in Canada, 2nd ed. (pp. 54–71). Concord, ON: Captus Press. Verdugo, M. A., Schalock, R. L., Keith, K. D., & Stancliffe, R. J. (2005). Quality of life and its measurement: Important principles and guidelines. Journal of Intellectual Disability Research, 49, 707–717. Wharf, B., & McKenzie, B. (1998). Connecting policy to practice in the human services. Don Mills, ON: Oxford University Press. Wolfensberger, W. (1972). The principle of normalization in human services. Toronto: National Institute on Mental Retardation.


CHAPTER 17

Advocacy in the 21st Century: An Integrated Model for Self-Advocates, Parents, and Professionals Steven M. Koch, Katy Beggs, Joy Bailey, and Jacqueline Remondet Wall

I

n a recent census survey, approximately 15 percent (41.3 million) of individuals in the United States reported having a disability (Brault, 2008). While some disabilities were sensory in nature (4.3 percent of the total sample), others were physical (9.4 percent), mental (5.8 percent), and/or related to self-care (3.0 percent). Disabilities affect individuals in various and multiple ways. Although many disabling conditions may restrict an individual’s opportunities to perform certain actions, these limits appear to be more artificial than once believed. In recent years, the concept of disability has shifted from a medical model perspective to a more social perspective (DePoy, 2002; Fabian, 2007; Gill, Kewman, & Brannon, 2003; Hahn, 1996), where the disability is viewed as a limitation artificially determined by the environment. For example, many individuals have limitations in their visual acuity. However, the invention of corrective lenses in the middle ages led to the development of eyeglasses, which are now a common environmental adaptation. Thus, rather than viewing one’s disability as an impairment, changes can be provided that eliminate or minimize environmental barriers that restrict participation in social, cultural, and political arenas (Dowrick & Keys, 2001). Unfortunately, societal barriers continue to exist that limit the full participation by people with disabilities. Attending a lecture without a sign language interpreter may hinder an individual with a hearing impairment from understanding the presenter. Requiring an individual to take the stairs to exit a place of employment during a fire may prevent an individual with a mobility limitation from accepting a job. Multiple accommodations would be required to allow all individuals to have equal access to the environment

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and needed services. A place of business may choose to not implement these costly modifications and accommodations. Advocacy is one approach that has led to increased awareness of the barriers in society, so that the necessary environmental accommodations can be provided. An advocate can be any of a number of individuals. She may be an individual with a personal interest in aiding others, such as a therapist. The advocate may be the parent of a person with a disability, teaching other parents how to advocate for their own children. He may be a person with cerebral palsy, acting as a self-advocate. The advocate may also be an organization, emphasizing the rights for people with disabilities through supporting legislation, educating the public and serving as a bridge to available resources and services. Given the multiple aspects of this concept, a question arises—what is advocacy? This chapter examines the definition of advocacy internationally and the history of the advocacy movement in the United States. It then proposes an integrated model of advocacy, and discusses implications for future advocacy efforts and research on its effectiveness.

DEFINING ADVOCACY Disabled Peoples’ International (DPI) recently stated, “There are no human rights to which persons with disabilities do not lay claim” (DPI, 2007). DPI challenged the world to make human rights initiatives a primary goal in individual and collaborative advocacy activities. Within the professional literature, there appears to be general acknowledgment of the terms advocacy and advocate, as these terms are frequently the focus of publications. Table 17.1 provides a summary of four literature reviews conducted by the authors of this chapter. These literature reviews examined the number of articles published between 2005 and 2007 in which the terms advocate or advocacy were listed as a keyword or a topic for that publication. Literature reviews were selected to reflect the publications specific to four different professions—psychology, education, medicine, and nursing/allied health. The first literature review (PsycINFO) identified international publications. As shown in Table 17.1,

Table 17.1 Number of Articles between 2005 and 2007 Containing Either Keyword Advocate or Advocacy

Review PsycINFO ERIC CINAHL MedLine

# Articles with Advocate or Advocacy

# Research Articles

# Articles in English

2,069 690 2,789 4,114

666 217 509 341

2,053 688 2,773 3,920

Notes: Literature searches were conducted on February 2, 2008. PsycINFO is an international literature database in psychology-related publications. ERIC is a literature database in education-related publications. CINAHL is a database for literature in nursing and allied health. MedLine is a database that reports on biomedical literature.

ADVOCACY IN THE 21ST CENTURY

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there were 9,662 articles identified using a keyword or topic related to advocacy during the two-year period of the search. Although most of the identified articles were published in English, this may have been due to limited entries in other languages included in the searched databases. Advocacy is not exclusive to English-speaking countries and is best considered an international concept (Chambers, 2007; Fujiura, Park, & Rutkowski-Kmitta, 2005). Only one in six of the articles was research- or evaluation-oriented (17.9 percent), suggesting that the examinations of the impact of advocacy was minimal when compared to the overall number of advocacy-related articles that have been published.

Definition and Role of Advocacy What do the terms advocacy and advocate actually mean? Whereas advocacy is used to further the needs and causes for individuals and groups of individuals, there is no general agreement on a definition for advocacy in the professional literature (Ezell, 1994). The word advocate is derived from the Latin verb advocare, which means “to call to one’s aid.” More recently, Chambers (2007) defined advocacy as “speaking out and standing up for what is thought to be important for people with intellectual and developmental disabilities; their families; the professionals, paraprofessionals, and volunteers” (p. 69). In addition, Chambers recognized that advocacy is an essential activity for working with people with disabilities and their families to improve their quality of life. In Australia, the Department of Families, Community Services and Indigenous Affairs and the State of Queensland jointly defined advocacy as: speaking, acting or writing with minimal conflict of interest on behalf of the interests of a person or group, in order to promote, protect and defend the welfare of and justice for either the person or group by: being on their side and no one else’s; being primarily concerned with their fundamental needs; remaining loyal and accountable to them in a way which is empathic and vigorous. (Strategic Reporting Framework for Advocacy, p. 4)

Not only does this definition address the role of the advocate, it further emphasizes the moral and emotional involvement required. This definition suggests that advocacy must be genuine and have no conflicts of interest for the advocate. Knitzer (1976) defined child advocacy as possessing the following six underlying assumptions. First, advocacy assumes people have, or ought to have, basic rights. Second, advocacy assumes rights are enforceable by statutory, administrative, or judicial procedures. Third, advocacy efforts are focused on institutional failures that produce or aggravate individual problems. Fourth, advocacy is inherently political. Fifth, advocacy is most effective when it is focused on specific issues. Last, advocacy is different from the provision of direct services and would include such activities as demonstrating to publicize issues, making demands to make a cause known, writing letters, providing fact-finding forums, holding town meetings and providing newsletters, performing symbolic actions, negotiating, educating the public, boycotting,

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lobbying, creating model programs, providing legal advocacy, and increasing participation of people with disabilities by using everyday language (Biklen, 1976). Although advocacy and service provision are often viewed as distinct activities, the United Nations acknowledged there is an inseparable link between the two (Byrnes et al., 1997). The United Nations noted that if services provided to people with disabilities were too limited, these individuals and their families would likely not have the time or energy to advocate for improved conditions. Consequently, if advocacy does not take place, then services will not improve and the environment will continue to provide barriers preventing full participation. Therefore, if one component is weak, the other will be as well, and a harmful cycle ensues. Advocacy also plays a part for many professional and disability-related organizations. Professional organizations recognize that one role for their members is to advocate for people with disabilities. The American Bar Association (ABA, n.d. a) established the Commission on Mental and Physical Disability Law to address the legal needs of people with disabilities. The commission’s mission is to promote a “commitment to justice and the rule of law for persons with mental, physical, and sensory disabilities and to promote their full and equal participation in the legal profession.” Mackelprang and Salsgiver (1996) noted that social workers act primarily as advocates by working with individuals to access services and by consulting with agencies and programs to collectively improve the lives of all people with disabilities. Routh (2005) acknowledged that psychologists indirectly become advocates when their views influence legislation, court decisions, and government-funded programs. In the United States, many disability-related organizations promote advocacy for people with disabilities. The National Disability Rights Network (NDRN, 2007), for example, is an association of state protection and advocacy (P&A) agencies across the nation. The NDRN Web site (www.ndrn .org) notes that P&A agencies are charged with providing legal and other advocacy supports for people with disabilities. In addition, P&A services are grounded in the beliefs of self-determination, equal access, and providing support through advocacy for individuals and the systems that provide services for people with disabilities. Another organization that promotes advocacy for people with disabilities in the United States is the Council on Community Advocacy (COCA, n.d.), which is a part of the Association of University Centers on Disability. COCA is dedicated to advocacy efforts by promoting policy advancement and educating people about existing policies. COCA also builds relationships with other national groups and federal agencies to promote the needs of people with disabilities. As noted in this section, there are subtle differences in the many definitions for advocacy. However, there is also a strong underlying theme that advocacy efforts should help give voice to those viewed as being at a societal disadvantage. Additionally, advocates should work with people with disabilities to increase self-determination, by empowering them and ensuring they have the knowledge to properly advocate on their own. Advocates (i.e., professionals, parents, and self-advocates) help identify and/or remove the barriers that impede access.


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Giving Voice One common goal across the definitions and roles identified is that advocacy provides a voice to the changes required in the environment for people with disabilities. All individuals, including those with disabilities, have certain rights, and advocacy ensures that these rights are acknowledged directly or that the appropriate grievance procedures are taken when these rights are withheld (Marlowe, Marlowe, & Willets, 1983). Advocacy can give voice to an individual with a disability (i.e., case advocacy) or to a group of individuals with disabilities (i.e., class advocacy; Melton, 1983). Whereas case advocacy attempts to change systems for one individual at a time, class advocacy works to change systems for a group of individuals (e.g., handicapped children). McLoughlin (1985) offered a similar distinction in terms of social or individual advocacy. A third form of advocacy involves organizational advocacy, where a voice is provided to a group of professionals or paraprofessionals working with people with disabilities. For example, the American Medical Association (2008) identified the association’s efforts that benefit its member physicians by advocating for reduced liability premiums and through managed care reform. Though these efforts do not directly influence people with disabilities, they may do so indirectly (for example, by ensuring an adequate number of physicians are available to provide care for people with disabilities). Rarely do individual advocates perform only one type of advocacy. Ezell (1994), for example, found that social workers performed case advocacy in their jobs, but provided class advocacy through volunteer work. While the means of advocacy may differ (i.e., individual versus group), the ends are the same. Regardless of whether advocacy is case, class, or organizational in nature, the advocate strives to change the conditions experienced by people with disabilities. One of the consequences of advocacy’s drive to provide a voice to individuals has been the growth of the self-advocacy movement. As people with disabilities and their families have become more knowledgeable about their rights, they have become more effective advocates for their own rights. There are several benefits to self-advocacy. The first benefit is related to firsthand experience with how the environment and those who have designed it have hindered participation by people with disabilities. Although those without disabilities can advocate for individuals with disabilities or their families, relating the daily struggles that people with disabilities experience on a daily basis is much more salient from that individual. He is able to speak firsthand about his desires, frustrations, and needs for inclusion. The second benefit is empowerment. In a recent study, parents found advocating as a positive experience, as it has helped both themselves and their child (Hess, Molina, & Kozleski, 2006). Parents were able to gain a sense of control over their child’s disability, which was otherwise overwhelming. This self-empowerment appeared to have a cumulative effect. That is, people who were empowered were often motivated to help others in similar situations, thus allowing others to benefit from their experiences.

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Barriers Although many people are motivated to advocate for people with disabilities, barriers are present. Depending on the situation, these barriers can be physical (e.g., stairs at the entrance of a building), legal (e.g. specified definitions of disability), occupational, educational, bureaucratic (e.g., application forms to obtain service), recreational, social (e.g., the perceptions of friends about an individual’s abilities or disabling condition), or personal (e.g., the reactions of friends about an individual’s abilities or disabling condition). Advocacy for people with disabilities is a relatively new phenomenon, occurring primarily in the last century and advancing exponentially in the past 30 years. Due in part to its recent development, people in some countries around the world may not be as aware of the needs and rights of people with disabilities. Consequently, disability awareness education is a critical first step toward increased participation in society. The increased awareness allows individuals to become more knowledgeable about people with disabilities, the contributions they can and do make in society, the rights they have, and the obstacles they face in daily life. Part of this awareness must include an understanding of the range of disabilities in society. Sometimes disabilities are readily obvious (e.g., an individual with cerebral palsy who requires a wheelchair for mobility). Other people may use this obvious disability to assume that people cannot participate and thus make no accommodations. Other disabilities are not as visibly obvious (e.g., learning disabilities, hearing impairment, etc.), and therefore, people might not recognize that accommodations are required. Another barrier for people with disabilities across the world is the varying levels of support provided. Although some countries are inclusive, through their legislation and through the level of citizen awareness about disability concerns, other countries are more exclusive and believe people with disabilities cannot meaningfully contribute to society. Regardless of the level of inclusion or exclusion, advocacy efforts will continue to be an effective way to give voice to people with disabilities in all countries. Similar to the disabilities which are more obvious or hidden, advocacy efforts may need to be both overt and covert, depending in part on the political climate within individual countries.

Conflict and Advocacy Although conflict may be viewed as a barrier to effective advocacy efforts, it is also a necessary and integral component of the advocacy process. A full discussion of conflict and negotiation is not possible in this chapter; the interested reader is encouraged to review other sources (e.g., De Dreu & Carnevale, 2003; Pruitt & Carnevale, 1993). In the context of advocacy for people with disabilities, conflict occurs whenever environmental barriers restrict an individual from fully participating in activities of interest or need. Eliminate the conflict and disagreement, and the need for advocacy is reduced. At the same time, however, too much conflict becomes detrimental to the process and to the collaborative work needed to find solutions. Thus, the skilled advocate must know not only how to push forward but how to maintain a working relationship with those


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who can create change. The skillful advocate must find that delicate balance, and reduce unproductive conflict (Allen, Nelson, Netting, & Cox, 2007). Conflict is often the result of limited resources, both tangible (e.g., durable medical equipment or the necessary funding) and those that are intangible (e.g., time and personal beliefs). Conflict also arises when individuals vary in their interpretation of a particular law. For example, the No Child Left Behind Act (20 USC. § 6301, 2001) in the United States ensured that standards were established for children in school. However, the act failed to recognize the special needs of children with disabilities. Ratcliffe and Willard (2006), for example, noted that children with a specific reading disability are often not allowed to complete their education, as their reading difficulties impair the ability to do well on performance tests. Research on the positive and negative outcomes of mediation may offer guidance to advocates about how to minimize a conflict so that a resolution can be reached. For successful reduction of conflict, all sides must feel that their core interests have been satisfied (Goldberg & Shaw, 2007). After a decision has been agreed on, follow-through on the points of agreement is also important (Nowell & Salem, 2007). If one party does not follow through with its tasks, the trust between the two parties is broken, and the individuals involved will likely feel disempowered. Conflict may also occur within the individual, such as having dual roles. For example, a psychologist serving as a consultative examiner, performing evaluations on individuals applying to receive benefits from the Social Security Administration (SSA), may feel a sense of role conflict. Although she is contractually obligated to provide information about the person’s diagnosis to SSA to determine benefits eligibility, she may also want to share feedback and recommendations with the individual undergoing the evaluation. However, sharing information with the individual about a known and effective treatment is not a part of the consultative evaluation process, resulting in conflict about who the psychologist is serving (SSA or the individual). Confusion about who the primary client is often leads to such role conflicts. By advocating too strongly for the individual being assessed or the payer, the advocate can lose her objectivity (Frith, 1981). Autonomy is crucial for advocates, who operate most effectively when they are independent of service provision. Biklen (1976) argued that this conflict of interest can be eliminated for professionals when they are not an employee of the service provider. However, there are also benefits for advocates who work within a system that could be lost by being external. For example, as an employee of a school district, a school psychologist has the advantage of knowing the system intimately, and is knowledgeable about those who influence the system. She can also establish trust as a member of that system. Impacting policy change is also more difficult when the advocate is outside of the system (Meyers, Gaughan, & Pitt, 1990).

HISTORY OF ADVOCACY To help our understanding of how best to advocate for people with disabilities, an examination of the events and circumstances in the United States,

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which have contributed to the current state of advocacy for individuals with disability, may provide insight. It was noted earlier in this chapter that the concept of disability has changed over time, from a medical model to an environmental/social justice perspective (DePoy, 2002; Fabian, 2007; Gill et al., 2003; Hahn, 1996). Where a disabling condition was once viewed as something within the individual that limits their functionality, the environment has recently become viewed as the disabling factor. The United States has a long-standing history of advocacy efforts for people with disabilities, starting in the middle of the 19th century. Though many important events and legislative actions have occurred over the past 160 years, our primary focus will be on the events that transpired during the past 60 years. This focus is largely because recognition and concomitant growth of individuals in our society with disabilities has grown exponentially during this period (Olkin, 1999). Changes in medical technology have led to increased survival rates for persons with significant injuries, leading to a larger number of individuals with traumatic disabilities. In addition, advances in diagnostic procedures and public education efforts have resulted in more persons being diagnosed with a range of disabling conditions. At the same time, there has been a similar increase in advocacy efforts to establish and protect the rights of people with disabilities. Many legislative acts and amendments have been passed in the U.S. legislature, and many court decisions have been made through the federal judicial system. The discussion of every legislative act pertaining to disability is too large to fit into the confines of this chapter. However, many of the important legislative acts and federal court decisions that apply to people with disabilities are presented in Table 17.2. It should be noted that Table 17.2 primarily lists the first introduction of federal legislation, and does not include subsequent reauthorizations. For example, while the Education of All Handicapped Children Act of 1975 (Public Law 94-142) is listed, all subsequent additions or reauthorizations are not included, such as the reauthorization of the Individuals with Disabilities Education Improvement Act of 2004. According to Bersani (1996), the disability advocacy movement is comprised of three distinct waves of advocacy effort: professional advocacy, parent-led advocacy, and self-advocacy. Each wave occurred before the next wave formed, but appeared to be a necessary force for a next wave. In addition, activities related to the earlier waves continue to progress, even while the next wave gains momentum. Thus, there is overlap between the waves. Within each of these waves are three primary types of activities to be discussed—the formation of national organizations, the creation of federal legislation that impacts people with disabilities, and federal court decisions (or case law), that clarifies the passed legislation.

The Professional Wave A major component of the advocacy movement in the United States was the formation of the various professional organizations. This is a hallmark of the first wave—professional advocacy. This first wave started in the mid1800s, with many professional organizations forming between the late 1800s


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Table 17.2 Selected List of Legislative Acts, Federal Court Decisions, and Founding Dates for National Organizations 1847 1866 1876 1878 1892 1896 1917 1918 1920 1935 1949 1950 1954 1955 1962 1963

1964 1965 1968 1970 1971 1972 1973 1974

1975 1979 1980 1982

1984 1985

1986

American Medical Association established Civil Rights Act American Association on Intellectual and Developmental Disabilities established American Bar Association established American Psychological Association established American Nursing Association established National Vocational Education Act Soldier’s Rehabilitation Act National Vocational Rehabilitation Act Social Security Act United Cerebral Palsy established The Arc of the United States established Brown v. Board of Education decision National Association of Social Workers established Special Olympics created Developmental Disabilities Assistance and Bill of Rights Act Mental Retardation Facilities Construction Act Association of University Centers on Disability network established Civil Rights Act Food Stamp Act Voting Rights Act The Autism Society of America established Architectural Barriers Act American Network of Community Options and Resources established PARC v. PA Commonwealth decision Mills v. Board of Education decision Rehabilitation Act Family Educational Rights and Privacy Act Lau v. Nichols decision The Association for Persons with Severe Handicaps established Education of All Handicapped Children Act National Alliance on Mental Illness established National Down Syndrome Society established Civil Rights of Institutionalized Persons Act National Disability Rights Network established Telecommunications for the Disabled Act Board of Education v. Rowley decision National Council on Independent Living established Voting Accessibility for the Elderly and Handicapped Act Irving Independent School District v. Tatro decision Protection and Advocacy for Mentally Ill Individuals Act School Committee v. Department of Education decision Employment Opportunities for Disabled Americans Act Education of the Deaf Act Handicapped Children’s Protection Act Air Carrier Access Act (Continued)

254 Table 17.2 1988

1989 1990 1991 1993

1994 1995 1996 1997 1998

1999

2001 2002

2006 2007

RESPONSES: PRACTICE, LEGAL, AND POLITICAL FRAMEWORKS Continued Fair Housing Act Technology Related Assistance for Individuals with Disabilities Act Honing v. Doe decision Traffic Safety for Handicapped Individuals Act Timothy W. v. Rochester School District decision Americans with Disabilities Act National Affordable Housing Act Self Advocates Becoming Enabled established National Voter Registration Act Florence County School District Four v. Shannon Carter decision Disabled Peoples International established US v. California Mobile Home Park Management Co. decision Missouri v. Jenkins decision Telecommunications Act Health Insurance Portability and Accountability Act Trovato v. City of Manchester, N.H. decision Assistive Technology Act Crime Victims and Disabilities Awareness Act Bragdon v. Abbott decision Ticket to Work and Work Incentives Improvement Act Cedar Rapids Community School District v. Garret F. decision Olmstead v. L.C. decision EEOC v. Walmart decision Martin v. MARTA decision Alliance for Full Participation established National Association of Councils on Developmental Disabilities established Combating Autism Act National Federation of the Blind v. Target decision

and the 1940s. While many of the professional organizations were created in part to advocate for their membership (e.g., the American Psychological Association to advocate for legislation affecting the practice of psychology), a supplemental role was to advocate for people with disabilities, either through case advocacy or class advocacy. Many of the organizations that formed during this time were exclusive to one profession. For example, the American Medical Association (AMA) was founded as national organization in 1847 for professionals in the field of medicine (AMA, 2007). The efforts of over 100 lawyers from 21 states led to the formation of the American Bar Association (ABA) in 1878 (ABA, n.d. b). The roles of the AMA, ABA, and other organizations are large and are unique to their specific profession. However, each of these professional organizations (and many others) dedicates a portion of their efforts to advocacy for people with disabilities. Although many of the organizations formed during this wave were professionspecific, some organizations were more interdisciplinary in nature, representing the needs of a particular group of people with disabilities. The American


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Association on Intellectual and Developmental Disabilities (AAIDD) was formed in 1876 as an organization for professionals who were involved with people with intellectual and developmental disabilities. The AAIDD was one of the first organizations directly involved in disability-related advocacy efforts. When the organization was founded, many in society believed that people with disabilities were defined by their disability—they were seen as menaces and were blamed for contributing to the decline of society (Wehmeyer & Berkobien, 1996). The initial roles that professionals played in the advocacy movement for people with disabilities consisted of developing test procedures to assess disabilities, identifying and classifying new disabilities, conducting and publishing research on disabilities, forming state and national organizations, arranging conferences, starting new programs, and consulting with service agencies and programs on local, national, and international levels (Bersani, 1996). In addition to the formation of professional organizations, several key legislative actions were initiated during the professional wave. Many of these acts, such as the Civil Rights Act of 1866, primarily addressed inequalities of individuals based on race or gender and only indirectly referred to people with disabilities. One of the legislative acts that directly addressed people with disabilities was the Smith-Hughes Vocational Education Act of 1917, which established the Federal Board for Vocational Education. This act provided federal funding to states for vocational educational programs (University of South Florida, n.d.). Another major legislative act during the professional wave was the Vocational Rehabilitation Act of 1920, which is considered the genesis of public rehabilitation for people with disabilities (Neilson & Moraru, 2001), and established vocational rehabilitation programs for people with disabilities under the Federal Board for Vocational Education. The funding with the Vocational Rehabilitation Act resulted in programs that provided “vocational guidance, training, occupational adjustment services, and job placement” (University of South Florida, n.d.).

The Parent Wave During the late 1940s, the advocacy movement for people with disabilities began to shift. Parents started to increase their participation in advocacy efforts for their children with disabilities. Some parents were members of professional organizations related to their professions, such as nurses (American Nurses Association) or lawyers (ABA). Other parents were involved in interdisciplinary organizations, such as the AAIDD, and worked through these organizations to address the needs of their children with disabilities (Bersani, 1996). However, as time progressed, parents felt their children’s needs were not fully addressed by the professional organizations, and they began to form new organizations to more actively advocate for their children. This second wave led to many parent-led organizations that were formed between the 1940s and 1970s. The primary membership for these parent-wave organizations were parents and family members. Professional affiliation was not a requirement, which gave nonprofessional parents a national voice for their

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concerns (Bersani, 1996). This shift led to the development of the parent wave of advocacy. The Arc of the United States was formed in 1950 by a small group of parents to support one another and to advocate for their children and families (Bersani, 1996), increase awareness, and to change societal perceptions of individuals with intellectual disabilities (Arc of the United States, 2005). Another parentled organization that formed during this wave was the Autism Society of America (ASA). The ASA was founded in 1965 by Dr. Bernard Rimland, Dr. Ruth Sullivan, and many other parents of children with autism. The hard work of members of the ASA has raised awareness of autism spectrum disorders and has “spearheaded numerous pieces of state and local legislation” (ASA, n.d.). Eunice Kennedy Shriver, sister of former President John F. Kennedy, was also very influential in the advocacy movement for people with intellectual disabilities. Eunice’s older sister, Rosemary Kennedy, had an intellectual disability and underwent a lobotomy in the 1940s in hopes of curing the behavioral difficulties she experienced. Unfortunately, the procedure resulted in a worsening of her disability and led to her being institutionalized following the surgery (Weil, 2005). The experiences of her sister led Shriver to actively advocate for the rights of people with disabilities. In June 1962, she invited 35 boys and girls with intellectual disabilities to her home to participate in physical activities and sporting competitions. Subsequently, the first Special Olympics were held on July 20, 1968 (Special Olympics, n.d.). The Special Olympics has since led to international participation, with organizations across the countries of the world. Although the parent wave was associated with the increased participation of parents in advocacy efforts, professionals continued to be active. Both parents and professionals collaboratively published articles and writings that supported a new view on people with disabilities. Persons with disabilities were no longer viewed as a menace to society but were seen as human beings with rights and with the need to be treated with dignity (Dybwad, 1996). The parent wave also saw the passing of federal legislation that reflected the need to treat people with disabilities with respect. The Rehabilitation Act of 1973 was an extremely important piece of legislation. This act consisted of a complete rewriting of the grant supporting vocational rehabilitation programs. The Rehabilitation Act prohibited discrimination based on disability for agencies and programs receiving federal funding, for federal agencies, and in places of federal employment (U.S. Department of Justice, 2005). This paved the way for another important act supporting the rights of people with disabilities—the Education for All Handicapped Children Act of 1975. This act led to the creation of special education programs across the United States and required that all children with disabilities be provided with a free appropriate public education (Sattler, 2001). All children, regardless of disability, were now provided with an education to foster the acquisition of knowledge to the best of their abilities. For both of these landmark acts, parents of children with disabilities played a critical role in their passage. The influence of the parent movement on the development of rights for people with disabilities remains strong. Even today, many acts concerning the rights of children with disabilities are the result of advocacy efforts by parents.


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More recently, the passage of the Combating Autism Act of 2006 was due in part to the strong advocacy efforts of many concerned parents.

The Self-Advocate Wave By the early 1960s, the Civil Rights Movement in the United States was well under way. The idea that people could stand up for themselves and fight for their own rights led to a significant shift in the disability advocacy movement (Furman, 1996). Also during this time, the United States saw an increase in the deinstitutionalization for persons with mental health conditions and the initiation of an independent living movement for individuals with physical handicaps. People with disabilities started to realize in greater numbers that they could speak up for their own rights and facilitate change for themselves. Thus began the third wave of advocacy, the self-advocate wave. By the end of the 1960s, people with disabilities were beginning to come together and give voice to their rights. Initial attempts at self-advocacy were small, but people persisted in their efforts (Perske, 1996). People with disabilities began to realize that the societies around them were built without their input or participation (Driedger, 1989). Although the self-advocacy wave focused on the efforts of people with disabilities to advocate for their own rights, these individuals with disabilities often had the support of others—often professionals and parents/family members who provided strength and guidance to individuals with disabilities on their quest to speak for themselves (Williams & Shoultz, 1982). Individuals with disabilities began forming organizations, planning conventions, and pushing for legislation on their own behalf, making substantial changes for the rights of people with disabilities. This push toward self-advocacy dramatically altered the landscape of disability advocacy efforts in the United States. The driving force of the self-advocacy movement is the idea that only people with disabilities can truly speak for themselves because they alone experience the discrimination and the barriers that block their success and equality (Williams & Shoultz, 1982). A statement made by Barbara Goode, a leader of the self-advocacy movement in Canada, encompassed its core belief: “We’re people first and handicapped second” (Semiahmoo House Society, n.d.). As part of this belief, people-first language altered the terminology used by professionals to describe people with disabilities. They were no longer called “Down children,” but were “children with Down syndrome.” The first self-advocacy organization in the United States was formed in 1973. People First of Oregon dreamed that their organization would release them from the intentions of professionals and their associated agencies, and would give them the voice to speak for themselves (Perske, 1996). The efforts of People First of Oregon quickly spread throughout the United States, and many self-advocacy organizations began to form at local, state, and national levels over the following years. The first national self-advocacy organization, Self Advocates Becoming Empowered (SABE), was formed in 1991 (Shoultz & Ward, 1996). Internationally, self-advocacy groups also began to form. The International League of Societies for the Mentally Handicapped (ILSMH), formed in 1967

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and developed a set of rights that should be implemented for individuals with intellectual disabilities (Dybwad, 1996). The United Nations adopted the Declaration on the Rights of Mentally Retarded Persons in 1972 based on a list of rights developed by members of ILSMH. This declaration included the right to choose a place to live, the right to engage in leisure-time activities, the right to preserve the physical and psychological integrity of the person, the right to vote, and the right to be given a fair trial. However, some of the rights developed by the ILSMH were excluded from the declaration, including the right to marry and the right to have children (Dybwad, 1996). In addition to the self-advocacy groups formed during this wave, key legislation was passed. The landmark legislation during this wave was the Americans with Disabilities Act (ADA) of 1990. The ADA prohibits discrimination against people with disabilities and requires equal access for all in the areas of employment and public access. The passage of the ADA was so important for people with disabilities that over 2,000 people gathered on the White House lawn on July 26, 1990, to witness its signing by President George H. W. Bush (Perske, 1996). Another important legislative act during the selfadvocate wave was the passage of the Individuals with Disabilities Education Act (IDEA) of 1991, which was the reauthorization of the Education for all Handicapped Children Act of 1975 (U.S. Department of Justice, 2005). In addition to the legislation that was passed during this wave, a key court case was decided that was based on a challenge to the ADA. In Olmstead v. L.C. (527 US 581, 614, 119 S.Ct. 2176, 144 L.Ed.2d 540; 1999) the Supreme Court determined that people with disabilities have the right to live independently in their community, and should not be forced into institutions (Center for an Accessible Society, 1999). This ruling upheld Title II of the ADA and enforced the movement of people with disabilities from institutionalized care back into their home communities. The acts and court decision described here were only small parts of the explosion of activity that occurred during the self-advocate wave. Individuals with disabilities in the United States continue to grow in their independence and their ability to fight for their rights and freedoms. People with disabilities continue to make their voices heard; they continue to work with legislators, professionals, and organizations to promote their cause. Each wave of advocacy appears to build on the earlier waves, and subsequently supports the waves that follow, creating a strong ocean that continues to make a difference in the lives of people with disabilities.

A MODEL FOR ADVOCACY Throughout the history of advocacy for people with disabilities, an explicit call for research has persisted (Ezell, 1994; Routh, 2005). Over 35 years ago, Ward (1972) argued for more research to determine the best methods of providing advocacy services. Today, the call remains still largely unanswered (Dowrick & Keys, 2001). Perhaps this call for research remains unanswered because of inadequate or vague definitions of advocacy. Perhaps the historical movement in advocacy efforts from professional to parent to self-advocate is


Fig. 17.1.

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3-Factor Integrated Model of Advocacy.

a response to the previous advocacy methods not being fully effective. Previous models have focused on one factor or another that distinguishes between different approaches to advocacy. Melton (1983), for example, proposed a distinction between case advocacy and class advocacy efforts. Biklen (1976) presented the notion of internal and external change agents; discussing the benefits and drawbacks for those advocates who are either working within the agency providing the services to people with disabilities or working from outside the agency. Throughout the history of advocacy for people with disabilities, advocates have transformed from being primarily professionals to including parents and self-advocates. We propose a model for advocacy that integrates the various distinctions between advocacy approaches. It is hoped that an integrated model provides a more comprehensive delineation on how the diverse approaches to advocacy interrelate. Within the proposed model, advocacy is defined by three factors—the advocatee, the advocator, and the relationship between the advocator and the service provider. Within this integrated model, the advocatee may be an individual (i.e., case advocacy), a group of individuals (i.e., class advocacy), or an organization (i.e., organizational advocacy). With respect to the advocator, he or she may be a professional, a parent, or self-advocate. Finally, the advocator may be acting internally to the providing organization or may be an external change agent. When these three factors are combined, the model provides 18 potential compartments in which particular advocacy efforts occur (see Figure 17.1).

The Advocatee The principal factor for our integrated advocacy model is the person for whom the advocacy occurs—the advocatee. Without an identified advocatee, the advocacy efforts are unnecessary. Similar to Melton’s (1983) notion of case and class advocacy, the current model makes a distinction between advocacy for the individual with a disability and advocacy for a group of

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individuals. However, our integrated model also includes a third distinct group—advocacy related to an organization. First, the advocatee may be an individual with a disability. An example of individual advocacy includes efforts to work with a neighborhood association to put up street warning signs for a child with a hearing impairment. Second, the advocatee may be a group of individuals. An example of group advocacy would include attempts to contact local elections officers to ensure that ballots accommodate individuals with visual impairments living in a group home in their precinct, such as providing Braille ballots at the voting site. The third group of advocatees for the integrated model is an organization whose mission is to work for the rights of individuals (singular or as a group) with disabilities. For example, organizational advocacy efforts may be provided to support changes in Medicaid funding to allow for increased homebound care for individuals with mobility limitations. Although it may appear at first glance that an organization can be either individual or group advocacy, a distinction must be made. For organizational advocacy, the focus of the advocacy efforts is not on the individual with the disability but on the organization and its members. In some instances, the advocacy goals of the organization are different to those of the individual (or group of individuals) with a disability. In most cases, the efforts of individual advocacy benefit only that individual for whom the advocacy is directed. There may be instances, however, when the case advocacy results in benefits for all individuals with similar disabilities. The Olmstead decision is one example of case advocacy that resulted in class advocacy benefits. In Olmstead, a case was brought on behalf of two women with intellectual disabilities who were placed in a psychiatric institution. While the staff at the psychiatric institution felt the women could be served through community-based programs, the state did not make slots available for these services. The Supreme Court ruled in favor of the two women, citing Title II of the ADA, which required services be provided in the most integrated setting appropriate to meet the needs of the individual with disabilities. Because of this ruling, all states were required to reexamine the appropriateness of the services provided to people with disabilities, resulting in many individuals being transitioned into community-based programs and settings.

The Advocator The second factor in the integrated advocacy model is the individual who provides the advocacy—the advocator. Similar to the first factor, there are three groups of advocators. These groups correspond to the first three waves of advocacy efforts suggested by Bersani (1996). The first advocator is the professional. The professional is someone who has received specialized training and uses his or her knowledge to advocate for those with disabilities. For example, a social worker may help a young adult with Down syndrome in disputing an error on his electric bill. The second group of advocators is the parent. The parent often did not receive the specialized training similar to the professional but has an invested interest in the individual with a disability.


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While the term parent is used to describe this group of advocators, an individual who is not a professional may be considered for this group, such as a family member or a paraprofessional. The parent advocator generally has a good working knowledge of the steps necessary to advocate for those with disabilities. This knowledge may have come from formal training, such as attending a workshop on special education law. The knowledge may have also come from less formal means, such as through personal research at the local library or by talking with other parents in a parent support group. The third group of advocators is the self-advocate, or the individual with a disability.

The Relationship The third factor in our integrated advocacy model involves the link between the advocator and the organization providing the desired service—the relationship. This factor is similar to Biklen’s (1976) distinction between internal and external change agents. The internal change agent is an employee of the organization. For example, the school psychologist who works for the local schools is advocating at a case conference for a young student with apraxia, to ensure that the school supply a communication board to accommodate peer and teacher interactions. The external agent is not employed by the organization. For example, a parent of a child with a disability is accompanied to a disciplinary hearing at school for her 14-year-old son by a hired attorney. The main distinction between internal and external agent is the potential for a conflict of interest between the advocator and the entity providing the service to the individual with a disability. Whereas the internal agent is employed by the organization, the external agent has little or no connection, and thus less conflict of interest. There are benefits and drawbacks for both types of relationship and both must be taken into account. For example, the internal agent is in a better position to “affect the structures, values, and priorities from within the system” (Meyers et al., 1990, p. 212). The external agent, on the other hand, can speak more freely, without risk of personal repercussions (e.g., losing one’s job for speaking up against an agency policy and its impact on individual with disabilities).

CONCLUSION Advocacy is not merely comprised of distinct activities and approaches used by advocators to support environmental accommodations for people with disabilities. Rather, the model proposes that advocacy is a dynamic, multivariate structure, which integrates three broad factors comprising specific advocacy efforts. From this framework, 18 distinct cells are offered in which advocacy efforts occur. It is hoped that this integrated model will guide advocacy efforts by providing more focused discussions from advocators on the benefits and drawbacks of particular advocacy strategies when determining their course of action. The model may also provide structure for the development of modules to train future advocates.

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The integrated advocacy model may help focus research on advocacy efforts. For example, researchers may consider examining whether particular advocacy approaches are more beneficial than others, based on the goals of that particular advocacy effort. They may examine whether differences exist between those who are effective advocates and those who are not. For example, what personal or environmental factors are associated with self-advocates who create social change? Are certain advocacy approaches linked with better advocatee satisfaction? Do parent advocates have better outcomes than selfor professional advocates? What approaches are better suited for class advocacy? Is there cross-cultural relevance to the findings of a given approach? How do local and national cultures impact a given approach, making it more effective in Saudi Arabia than in the United Kingdom? With the change in perspective on disability to a more social and environmental view, individuals are now being recognized as full partners in the discussion about what they desire and need to become more fully integrated. We are not certain what the future holds. Yet perhaps we are experiencing the initial stages of a fourth wave of advocacy efforts—a collaborative wave. It may be that this fourth wave will be an integration of efforts among the many advocators—professionals, parents, and individuals with disabilities. In 2005, individuals from 11 national organizations joined together to form the Alliance for Full Participation (n.d.). The founding member organizations of alliance included groups of professionals, parents, and self-advocates, with a goal that people with disabilities live “meaningful, productive, and personally satisfying lives in their community of choice.” Through this collaborative partnership, they hope that their collective voice can be heard more clearly, to make the vision of full participation a reality.

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Biklen, D. (1976). Advocacy comes of age. Exceptional Children, 42, 308–313. Brault, M. (2008). Disability status and the characteristics of people in group quarters: A brief analysis of disability prevalence among the civilian noninstitutionalized and total populations in the American Community Survey. Retrieved February 10, 2008, from www.census.gov/hhes/www/disability/GQdisability.pdf. Byrnes, A., Conte, A., Gonnot, P., Larsson, L., Schindlmayr, T., Shepherd, N., et al. (1997). From exclusion to equality: Realizing the rights of persons with disabilities. Geneva: United Nations. Center for an Accessible Society. (1999, June 22). Supreme Court upholds ADA “Integration mandate” in Olmstead decision. Retrieved December 4, 2007, from www.accessiblesociety.org/topics/ada/olmsteadoverview.htm. Chambers, D. (2007). Role of advocacy in ensuring disability rights and entitlements. In I. Brown & M. Percy (Eds.), A comprehensive guide to intellectual and developmental disabilities (pp. 69–84). Baltimore, MD: Brookes. Council on Community Advocacy, Association of University Centers on Disability. (n.d.). Council on Community Advocacy. Retrieved on February 16, 2008, from www.aucd.org/template/page.cfm?id=41. De Dreu, C. K. W., & Carnevale, P. J. (2003). Motivational bases of information processing and strategy in conflict and negotiation. In M. P. Zanna (Ed.), Advances in experimental social psychology (vol. 35, pp. 235–291). New York: Academic Press. DePoy, E. (2002). Will the real definition of disability please stand up? Psychological Process, 15, 50–53. Disabled Peoples’ International. (2007, September 8). Seoul declaration. Retrieved February 16, 2008, from v1.dpi.org/lang-en/index?page=18. Dowrick, P. W., & Keys, C. B. (2001). Community psychology and disability studies. Journal of Prevention & Intervention in the Community, 21(2), 1–14. Driedger, D. (1989). The last civil rights movement: Disabled Peoples’ International. New York City: St. Martin’s. Dybwad, G. (1996). Setting the stage historically. In G. Dybwad & H. Bersani Jr. (Eds.), New voices: Self-advocacy by people with disabilities (pp. 1–17). Cambridge, MA: Brookline Books. Ezell, M. (1994). Advocacy practice of social workers. Families in Society, 75(1), 36–46. Fabian, E. S. (2007). Counselor advocacy for access: Addressing the challenges of disability. In C. L. Lee (Ed.), Counseling for social justice, 2nd ed. (pp. 75–94). Alexandria, VA: American Counseling Association. Frith, G. H. (1981). Advocate vs. professional employee: A question of priorities for special educators. Exceptional Children, 47, 486–492. Fujiura, G. T., Park, H. J, & Rutkowski-Kmitta, V. (2005). Disability statistics in the developing world: A reflection on the meanings in our numbers. Journal of Applied Research in Intellectual Disabilities, 18(4), 295–304. Furman, B. (1996). The history of People First in Washington State. In G. Dybwad & H. Bersani Jr. (Eds.), New voices: Self-advocacy by people with disabilities (pp. 180–202). Cambridge, MA: Brookline Books. Gill, C. J., Kewman, D. G., & Brannon, R. W. (2003). Transforming psychological practice and society: Policies that reflect the new paradigm. American Psychologist, 58(4), 305–312. Goldberg, S. B., & Shaw, M. L. (2007). The secrets of successful (and unsuccessful) mediators continued: Studies two and three. Negotiation Journal, 23(4), 393–418. Hahn, H. (1996). Antidiscrimination laws and social research on disability: The minority group perspective. Behavioral Sciences and the Law, 14, 41–59.

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Hess, R. S., Molina, A. M., & Kozleski, E. B. (2006). Until somebody hears me: Parent voice and advocacy in special educational decision making, British Journal of Special Education, 33(3), 148–157. Knitzer, J. E. (1976). Child advocacy: A perspective. American Journal of Orthopsychiatry, 46, 200–216. Mackelprang, R. W., & Salsgiver, R. O. (1996). People with disabilities and social work: Historical and contemporary issues, Social Work, 41(1), 7–14. Marlowe, H. A., Marlowe, J. L., & Willets, R. (1983). The mental health counselor as case manager: Implications for working with the chronically mentally ill. American Mental Health Counselors Association Journal, 5(4), 184–191. McLoughlin, C. S. (1985, April). Advocacy in school psychology: Problems and procedures. Paper presented at the Annual Convention of the National Association of School Psychologists, Las Vegas. Melton, G. (1983). Child advocacy: Psychological issues and interventions. New York: Plenum Press. Meyers, J., Gaughan, E., & Pitt, N. (1990). Contributions of community psychology to school psychology. In T. B. Gutkin & C. R. Reynolds (Eds.), The handbook of school psychology, 2nd ed. (pp. 198–217). New York: Wiley. National Disability Rights Network. (2007). The P&A/CAP system. Retrieved on February 16, 2008, from www.ndrn.org/aboutus/PA_CAPext.htm. Neilson, S., & Moraru, H. (2001). The Smith-Fess Act 1920. Retrieved January 8, 2008, from jschell.myweb.uga.edu/history/legis/smith-fess.htm. Nowell, B. L., & Salem, D. A. (2007). The impact of special education mediation on parent-school relationships: Parents’ perspective. Remedial and Special Education, 28(5), 304–315. Olkin, R. (1999). What psychotherapists should know about disability. New York: Guilford. Perske, R. (1996). Self-advocates on the move. In G. Dybwad & H. Bersani Jr. (Eds.), New voices: Self-advocacy by people with disabilities (pp. 18–37). Cambridge, MA: Brookline Books. Pruitt, D. G., & Carnevale, P. J. (1993). Negotiation in social conflict. Pacific Grove, CA: Brooks/Cole. Ratcliffe, K. G., & Willard, D. T. (2006). NCLBA and IDEA: Perspectives from the field. Focus on Exceptional Children, 39(3), 1–15. Routh, D. K. (2005). Historical reflection on advocacy in the psychology of intellectual disability. Journal of Clinical Child and Adolescent Psychology, 34, 606–611. Sattler, J. M. (2001). Assessment of children: Cognitive applications, 4th ed. San Diego: Sattler. Semiahmoo House Society. (n.d.) Where we have come from. Retrieved January 28, 2008, from www.semi-house-society.com/AboutUs/history.htm. Shoultz, B., & Ward, N. (1996). Self-advocates becoming empowered: The birth of a national organization in the US. In G. Dybwad & H. Bersani Jr. (Eds.), New voices: Self-advocacy by people with disabilities (pp. 216–236). Cambridge, MA: Brookline Books. Special Olympics. (n.d.). From backyard camp to global movement: The beginnings of Special Olympics. Retrieved on February 10, 2008, from www.specialolympics .org/Special+Olympics+Public+Website/English/About_Us/History/default .htm. Strategic Reporting Framework for Advocacy. (2007). Australian Government Department of Families, Community Services and Indigenous Affairs and the State of Queensland (Disability Services Queensland). Queensland. Retrieved February 16, 2008, from www.disability.qld.gov.au/publications/strategic-frameworkadvocacy/documents/strategic-framework-advocacy.pdf.


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University of South Florida. (n.d.). World Wide Web review guide for the CRC examination: Legislative history of the American state-federal Vocational Rehabilitation program. Retrieved on February 17, 2008, from luna.cas.usf.edu/~rasch/ leg.html. U.S. Department of Justice. (2005, September). A guide to disability rights laws. Retrieved January 15, 2008, from www.usdoj.gov/crt/ada/cguide.pdf. Ward, S. A. (1972). Components of a child advocacy program. Children Today, 1(2), 38–40. Wehmeyer, M., & Berkobien, R. (1996). The legacy of self-advocacy. In G. Dybwad & H. Bersani Jr. (Eds.), New voices: Self-advocacy by people with disabilities (pp. 245–257). Cambridge, MA: Brookline Books. Weil, M. (2005, January 8). Rosemary Kennedy, 86; President’s disabled sister. [obituary]. Washington Post, p. B06. Retrieved February 10, 2008, from www .washingtonpost.com/wp-dyn/articles/A58134-2005Jan8.html. Williams, P., & Shoultz, B. (1982). We can speak for ourselves: Self-advocacy by mentally handicapped people. Bloomington: Indiana University Press.


CHAPTER 18

A Journey of Self through the Lives of Others: Historical Removal, Displacement, and Sanctioned Injustice Rae Kelly

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ozlan Assan lived for 87 years. He was a soft-spoken man—gentle, not known to raise his voice harshly. He loved fishing, and on numerous times, we would take him on fishing trips to Cowley and Mourilyan Harbour. During the last 20 years of his life, he would stay with us for weeks at a time and looked forward to his fishing trips. Occasionally, he would mutter to himself and say, “All this place here, my old haunts! Used to be good fishing when I was a young fella!” I am Rae Kelly, born in Innisfail, Queensland, Australia, and descendant of the rainforest Djiru and Djabagai clans. I am the youngest of 10 siblings— left motherless at birth. My sister Tina left school to take care of me and five other young siblings. After Tina married, it was understood that I would be raised permanently by her. Kozlan Assan was my father. We were fishing a distance away from an overhanging rock at Mourilyan Harbour. We were discussing the new dredging work taking place in the harbor. He was silently baiting his line when uncharacteristically he glared at me and angrily burst out saying, “White man! Know nothing ‘bout this place! Don’t know anything ‘bout black fellas!” Flabbergasted, my family and I watched him as he pointed to the overhanging rocks and emotionally blurted out “See them rocks over there! I was born under them rocks! There! See over there!” Then he looked at me, shrugged, and grunted “huh!” His barrage of information shocked me, as it was the first time he acquainted me with the information that he was Aboriginal. Having had his say, I was left spellbound, then I began firing questions at him. Indignant, he uttered privileged information for the first time to my husband, our two sons, William and Brian, and me. As he pulled his line in,

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his voice shook as he softly said, “My mother was full blood [Aborigine], her name was Maggie, she come from Djiru country. I was nine years old when I last seen her. Had a sister name Nellie, she died now. We used to hunt and fish around here!” He looked at me and smiled as he added, “You go to university—it’s good! Maybe you write about this. You know from when you were small, you always ask lots of questions. Yeah! Maybe you should write my story hey! I’ll tell you ‘bout our culture, too. Look like you have to be the one to write it.” Looking back, admittedly, I was the child who went against his rules and regulations and was hopelessly rebellious with no intention of placidly following his directions as my other siblings did. This would obviously justify other people’s opinion of me as being a bit of a rebel. However, despite my bad habits, when I became an adult, my father bestowed on me the status of “keeper of the knowledge,” a role that I humbly accepted. My father had jealously guarded his Indigenous history. My mother was one of four sisters. Her name was Maggie, and her sisters’ name[s] was Minnie, Rosie, and Kitty. I had a sister, too, her name was Nellie, and she was like me a “half-caste” [a Darwinist scientific term that was placed on mixedrace Indigenous people within Australia]. My mother and aunties use to take us kids with them to hunt for food every day. We’d catch plenty of fish and other foods. Never starved! Always had plenty to eat.

One question haunted me. My father’s appearance did not match up with his Malayan name—here was my chance to ask him why. He looked at me, and grinned. You always asked too many questions! Okay! Kozlan Assan is not my real name—it’s an adopted name. My language name is Poomahnoo-djiru, (meaning strong arm). We never say our name; everybody just knew which clan language name we belonged to. We are only a small clan belonging to the big tribe, Jittabul, other little groups belong to that big tribe, too. We stayed on the beach side, only small group.

Interestingly enough, the areas he discussed are today thriving tourism areas—Mission Beach, Kurrimine, Dunk Island. Considering the places my father called home, I wasn’t surprised that his reflections included memories of a young lad’s techniques on how to gather lobster or crayfish. Catching larger fish was a task left to men who had already been initiated. We’d float over the reefs and make mating noises like them crayfish and watch them come out crawling all over each other. It was easy picking ‘em up in our basket scoops. In a bark canoe, just big enough to fit a kid, we had to go out and tie a suckerfish on the end of a long lawyer-vine, the suckerfish would suck onto a big fish. We would signal to the men who were waiting knee-deep with spears ready to dive in. We didn’t have to go too far out to get fish, just waited for the tide to go out. Us kids would just take ‘em out from them fish traps. They’re still there down Binga and Clump Point, and Chinaman planted them mango trees.

A JOURNEY OF SELF THROUGH THE LIVES OF OTHERS

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Fondly, he praised his mother’s and other aunties’ method of teaching, the importance of reading seasonal weather patterns, characteristics that communicated the environment habitat’s biological cycle, and the changing environmental patterns found within the biological ecosystem. He reflected on memories that would rend punishment from his mother. Sheepishly, he admitted that his mother’s instructions would be forgotten while playing with his unlimited fauna pets. It was my job sometime to stay in the camp and look after them old people They were very old and it was my job to make sure they had food and plenty water to drink, to stop ‘em from dehydrating in the heat, and in the cold time, making sure that fire was stoked up to keep ‘em warm. I had a lot of pets, and I’d forget sometime to check on them old people and get a floggin’ off my mother.

He told how his Uncle Pompey Clump Point taught him how to make spears, bark canoes, and fishing nets. Through his experiences he ended up pointing out and describing some naturally growing foodstuffs his people gathered in the rain forest, which would be the envy of many gourmet food aficionados today. Seasonally, as he remembered it, the people traveled nomadically throughout what they recognized as their homeland territory. Their nomadic lifestyle safeguarded against any tendency to deplete natural resources as they did not stay longer than necessary in any one area that might lead to the overtaxing the delicate rain forest eco-system. Instead, their Aboriginal ways allowed natural resources found on the landscape to replenish. Though my father chose to share his identity, who he was at his core, late in life, it was only through his stories that I was able to better know myself. Times were tough for Aboriginal families in the 1920s, though elders fondly recall my mother’s—Edith’s—talented home skills, especially her expertise at cooking. Not only was she gifted with the ability to feed the everlasting multitude, somehow she also managed to do so with meager ingredients. As a sign of her affection for Edith, Kozlan’s sister Nellie made it her business to visit the couple whenever she could. Haughtily she once told Kozlan that she was only there to visit his wife Edith and their children. For several years, Edith was known for her strong support of and empathy for the nocturnal starving itinerants, who were hiding in the wild in an attempt to avoid being captured and taken to incarceration reserves. Despite the trouble she might cause herself, Edith virtually hid her visitors in the family house. She fed and provided a place for itinerants to rest overnight as well as making sure that her swag always contained food for her fugitive guests. It was her practice to safely awaken her charges before daybreak to help them on their way. Kozlan’s hard-earned timber-cutting wages along with his drinking binges with his mates came every fortnight, leaving Edith with barely enough to feed and clothe her family. Somehow though, Edith managed on her shoestring budget. Tina remembers how mother provided for the family in the early 1930s—foraging daily for fresh food, naturally occurring crops. Nor was our family the only

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ones to harvest the bounty of the land; other mothers and children along the banks of Ninds Creek went out searching. As long as we had a bag of rice, it was our main food. Mum and all the aunties and us kids, spent most of the day down the river. Everyday with our “billy cans” each, we’d walk from Ninds Creek to the mouth of the Johnstone River. Although it was hard work, we had fun lifting up the “pannikin and eel grasses.” It didn’t take long to fill the billy cans with prawns. We’d fish and have dinner, then fish again, then ate in the afternoon make our way back home. We didn’t have to worry about fruit and vegetables. Those old kukies! [Malaygrandfathers] would give us plenty from their gardens. Everyday was the same and everybody was happy.

Edith supported Kozlan in his quest to help his black brothers gain equal employment opportunities. Kozlan joined the Communist Party in Innisfail and was a staunch leader within the party. He became devoted to the cause, and due to his popularity many members a part of the Aboriginal community became members. However, Kozlan’s involved association with the Communist Party along with his binges every fortnight put a lot of emotional and physical strain on his pregnant wife, Edith. Contemporaries at the time, who are now elders, recall how Edith, even in advanced pregnancy, assisted Kozlan by delivering communist pamphlets in the pouring rain until late into the night. The difficulties of carrying Edith’s 10th child ended this campaign. Hemorrhaging profusely, the doctors hurriedly used forceps to pull the baby through the birth canal. With very little strength remaining, Edith breathed her last breath, bringing her infant daughter—me—into the world. The Malayan women prepared a Mohammedan’s burial for Edith. Embalmed and draped in white muslin, the body stayed in the house for two days. Kozlan’s heart wrenched, as he watched his small daughters being restrained by their big brother, Johnny. The little ones cried as they fought to attend their mother’s lifeless body. While Edith lay within the house, many people came to pay their respects, for she had helped so many during her short life. Two days of mourning and feasting took place according to Malayan custom. World War II was a turbulent time, especially as it affected where families lived or where they would relocate. Pressured into a choice, Kozlan took his children to live on a mission of his newly found religion, which turned out to be hell on Earth for his baby daughter. Without due care or consideration toward her older married sister’s strong opinion, I was removed from her care and taken to the mission with my father and other siblings. There, I began to live “under the act” and thus began my traumatic journey of sanctioned injustice. As often happens, it is only with the passage of time and the clarity that Kozlan was able to return to who he was in his past. In doing so he opened the flood gates and gifted his children—allowing them entrance into their own identities. Mother, father, family, and all. My life has been as a meandering river with some sharp twists and turns that evolves through its good times and bad times. The psychological impact of my family’s experience has affected my journey through life. My family’s experience is repeated in the memories of many Aboriginal women.

A JOURNEY OF SELF THROUGH THE LIVES OF OTHERS

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Indigenous parents were regarded as unfit people, who had no inclination or any capability of being responsible for their children. During the early 1900s to the 1960s, government policies, living “under the act,” meant that Indigenous children became wards of the state, depriving children of cultural norms, parental guidance, and family life. In mission life, nonindigenous paternalism replaced Indigenous parenting roles, controlling every facet of people’s future directions. Yet we are triumphant conquerors today. Indigenous women relive their experience through their writing, encouraging other Indigenous women to stand up with resilient spirit—matriarchal role models within the community.


CHAPTER 19

States of Exceptionality: Provisional Disability, its Mitigation, and Citizenship Fiona Kumari Campbell

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his chapter examines the ways in which law mediates medico-technological formulations of impairment. Many years ago it was hard to imagine a scenario where people with disability could be pressured into obtaining surgical, prosthetic or pharmacological interventions in order to avail themselves of the identity of the “ ‘disabled person’,” thus enabling them, to access social services and legislative protections. First, I explore how law operates as a narrative and provides an outline of legal baggage and backdrops. The legal storyteller makes certain unconscious and implicit choices regarding the spaces and places within which the narrative or story of disability unfolds. Rather than being neutral, these choices reinforce a performative passion for sameness and a notion that disability is inherently negative. I then explore disabled peoples’ encounter with the law and the matter of mitigation of disability in law. Finally, I demonstrate how these legal formulations have the capacity to redefine disability as being provisional or tentative.

LEGAL BAGGAGE AND BACKDROPS Law has traditionally had an ambivalent attitude toward disabled people, restricting itself to being an arbiter of rules and policies about care and protection. The rule of law and its enactment in common law constitutions focus on the rights of individuals, as enforced by courts. A frequent motif in the literature on the rule of law is that the rule protects against the use of arbitrary power by governments against individuals. Joseph Raz (1977) noted elasticity of the notion of arbitrary power, concluding that “many forms of

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arbitrary rule are complementary with the rule of law” (p. 2). When courts construct legal doctrine and write judicial opinions, they do so by organizing and interpreting events and ontologies of personhood according to a narrative in which the events and characters “relate to one another and to some overarching structure, in the context of an opposition or struggle” (Ewik & Sibley, 1995, p. 200). However, the elusive nature of impairment (particular when lived out in a social context) and the problematical difficulties, in some instances, of forecasting prognosis, does not neatly fit with the law’s focus on rules, formulas, and predictability. Legal responses to the challenges of disablement persistently demonstrate a performative passion for sameness (Stiker, 1999). Not just any sameness, but paradoxically and deliberately, a sameness underpinned by an ontological separation between abled and disabled, where mixtures are absorbed through processes of fabricating or simulating abledness. In many ways, law is an attempt to create order out of disorder (i.e., diversity and difference) through a process of purification—the establishment and demarcation of distinct zones (disabled/abled, human/nonhuman), and through a process of translation that acknowledges the reality of mixtures between these extremes. States of disability and health are far more ambiguous and ambivalent than the establishment zones suggest. The health/disability continuum is continually meditated through context (e.g., certain mobility differences matter more in distinct environments than others), always fluid and fluctuating according to both internal (organic) and external (environmental) stressors and cultural modalities. Law is uneasy with bodies that ooze or are leaky, especially those that are fat, distressed, sick, dying, addicted, and appear impermanent. I argue that law reflects a broader desire to drive down disability—thus ensuring that this class of enumerated persons remains problematically in a state of exceptionality, defined by law, rather than being a significant part of a country’s population. The state of exceptionality refuses to conceive of disability as a form of difference within the population. The role of biomedicalism coupled with regulative aspects of the law can be found in many legal definitions of disability. For instance, in the Indian Person with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act (1995), disability is reduced to diagnostic types: s. 2 (i) and a “person with a disability” to “a person suffering from not less than 40% of any disability as certified by a medical authority” (s. 2 (t)). In this example, the legal enactment of purification zones attempts to settle the matter of disability by way of enumerative exactness and reduction of disability to a medical model. The motif of disability is much more than a state of being. Nationalism demands that the archetypal normative citizen be free from flaws and matters of possible degeneracy. In these times of economic rationalism and panics over risk and terror, the sentiments of famous U.S. eugenist case Buck v. Bell (274 U.S. 200) find new credence: We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with

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incompetence. It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. . . . Three generations of imbeciles are enough. (p. 208)

The utilization of legal remedies by disabled people, especially after acquisition of impairment, occurs within a broader sociological context of an increasing “culture of blame.” The disabled litigant is required to show that they have suffered (Brown, 1993, 1995). For example, when a court declares that a disabled litigant does or does not conform to a legal rendering of disability, the court has to first construct a narrative in which a character (the disabled plaintiff) is faced with an obstacle or conundrum (disability discrimination) posed by an antagonist (a disability discriminatory employer, for instance). In framing a disability discrimination case in this way, a court is assembling a set of circumstances into an intelligible whole, into a coherent narrative in which the actions and events are endowed with intentionality, meaning, and purpose. In analyzing the law as it pertains to disabled people, I have drawn on the concept of interest convergence, or situations where white people with power endure or foster black advancement only to the extent that such advancement promotes white interests. (Delgardo & Stefancic, 2000). Within the arena of the subordination of people of color, Richmond v. Croson (488 U.S. 469, 1989) revealed the limits of race-based interest convergence. In that decision, the Court proclaimed that African Americans had accomplished racial equity with white people and, as a consequence of their “success,” could no longer rely on a history of racial discrimination to argue for the maintenance and introduction of affirmative action programs. Thus, the trend in courts of narrowing the definition of disability by reframing disablement in terms of mitigation has already occurred in the United States and is likely to have international implications. Regardless of where we live, the notion of mitigation will transform civic understandings of disablement as something that is provisional and tentative. This trend is of concern when the tendency towards a universalized codification of disability (norms) is on the increase.

WHEN LAW MEETS DISABILITY: POSSIBILITIES AND DANGERS Biomedicalism assumes that impairment has an existence that is accurate, significant, and impartial and is altogether independent of any social context or discursive representation, has encroached on the psychic life of the disabled person with a disability because it asserts that disability is internal, inaugurating a crisis within the person’s bodily or cerebral self. Disability is a state that warrants medical interventions, curative treatment, and mitigation of the impairment or compensatory legal remedies wherever possible.1 Medicine in cooperation with law is brought in to assess the “damaged” body by using scaled enumerative scripts such as those typified by the Table of Maims, whose fiction is legislated into existence. Law’s investment in

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biomedicalism invokes a moral landscape wherein the unruly body is culpable and blameworthy (and thus held responsible), whereas the “real” ’ disabled body is innocent (thus deserving legal protection). Discourses around medical research, new technologies, and practices contain implicit narratives of disability as a personal medical tragedy. This theory regards the existence of impairment and the experience of disability to be inherently negative. As Michael Oliver (1996) puts it: “disability is [viewed as] some terrible chance event which occurs at random to unfortunate individuals” (p. 32). Biomedical fabrications of ontologies of disability as tragic are policed by law that has the authorizing power to say what disability is and is not. Increasingly, legal regimes are used by disabled people to access greater resources and services to mitigate the effects of impairment and as a vehicle for the monetary compensation of loss. However, recent studies have suggested the emergence of a paradox, wherein the application for disability benefits and compensation can generate feelings of despondency as the disabled person engages in a process of altered perceptions and puts on the “clothes of a disabled identity” (Holloway, 1994; Sayer, Spoont, & Nelson, 2004). Throughout these processes, the disabled litigant is required to “identify” with the disabled person before even commencing the process of articulating a breach of rights or securing protective remedies. The litigant needs to draw on a wellspring of suffering and future damage. Under the Americans with Disabilities Act (ADA), disabled people are viewed as a “discrete, insular minority” (Barhorst, 1999–2000, p. 139), reinforcing the belief that disability is exceptional rather than normative. This insular version of disablement carries with it a negative connotation that Rovner (2001, p. 250) argued is “hard wired into law.” A good citizen is one who does the right thing by mitigating an assumed burden associated with their impairment. Legal discourses play a critical role in maintaining the distinction between those designated as sick, well, deserving, and undeserving. Disabled people’s interactions with law necessitate that people with disability act in ways that are in accordance with discourses norm of abled-ness. Maybe the spectacle of a litigant with disability acting out a part (the “disabled role”) in court would be amusing—a performance necessary to achieve a remedy, were it not for the enduring psychic consequences of playing to such a drama. It is important to not just look at what is confessed or how disability is spoken of in trial judgments; there is also a need to interrogate the silences and uncontested assumptions about disablement. Injury then, and its companion response, mitigation of impairment, has become the interpretive lens through which to speak of the experiences of impairment and its performative and economic impacts. In short, the entry point of disability into law is through the doors of deficiency—an assumed deficiency in the body, merging into a deficiency in character. The art of lawyering is a process that involves fictional creations of truth, where as Cain (1994) described “lawyers are imaginative traders in words. But these symbols traders are also creative. They invent categories and these categories constitute the practices and institutions within which their clients can achieve their objectives” (p. 33). Insofar as deficiency and the tragedy of


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impairment are assumed, liminality created by an ableist culture, and the ways law culturally mediates difference and marginality become curtailed and hidden. The necessity to embrace the narrative of suffering signifies disability as a negative state. The burden of negative formulations of disablement means that the litigant with disability would have difficulty if she wished to present an affirmative approach to living with an impairment colored by a mixture of joy and despair. Such a representation is diametrically in opposition to dominant cultural narratives of disablement as catastrophe and therefore as Rovner (2001) observed, “law’s constraints make it impossible for [those] stories . . . to be heard and recognized” (p. 277). In summary, the inscription of certain figurations of legal disability requires that disabled people’s experiences be regulated within the confines of juridical formations, ultimately foreclosing any alternative perspectives. Interestingly, the delimitation and marking of certain bodies as disabled or injured, bears little resemblance to the views of people with impairments and is ostensibly “imposed through policies of repression and coercion” (Emecke, 2000, p. 494). Legal rendering of disability through statutory definitions and case law can produce a dissonance between those “official” and private realities.2 “Mitigation compulsions or ‘the most envenomed serpents admit of some mitigation, and will not bite their benefactors’ ” (Josephus, 1974, p. xvii. v. §5). Philosophical conversations about mitigation raise a number of questions related to the quandary of impairment—such as, what does it mean to mitigate impairment? What is the justification for mitigation? Finally, do people with disabilities have a duty to mitigate their impairment? In exploring these questions, I argue that it is important to also think about how answers to these questions would differ (or not) if we were responding to mitigation in the context of people of color, gay men, lesbians, and women. In which case, what difference does having a disability make and why does disability make a difference? I want to start, rather unusually on my part, with a dictionary definition of mitigation: Mitigation: 1. Compassion, mercy, favour. Obs. 2a. The action of mitigating or moderating; the fact or condition of being mitigated; an instance of this; spec. abatement or relaxation of the severity or rigour of a law, penalty, etc.; extenuation or palliation of an offence, fault, etc.; abatement or minimization of the loss or damage resulting from a wrongful act. in mitigation (Law): by way of extenuation or palliation (esp. of an offence) in order to obtain a favourable modification (of judgment, a penalty, damages). b. Something that serves to mitigate; a mitigating circumstance or provision; a palliative. Later also in Criminal Law: mitigating circumstances collectively, esp. presented or accepted in extenuation of an offence. 3. Prob.: a soothing remedy. Obs. 4. Softening or qualification of wording, etc. Obs. 5. Taming (of an animal). Obs.(Oxford English Dictionary Online, 1989).

At the outset, mitigation signals a desire to soothe, to make mild or gentle3 that which is being mitigated. When applying such sentiments to disablement, the vision of soothing the suffering body under the guise of care

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and compassion comes to mind. Moving through the definition, phrases like “minimization of the loss or damage” appear as “a palliative” response (2b), but interestingly also as a “taming” of an animal (5). Does mitigation then, transcend a therapeutic response and become a strategy for taming the unruly disabled body? One development that has attracted the attention of some legal scholars is the use of terminology such as “elective” or “voluntary” disability. Proponents of the legal concept of elective disability have argued that legislatures should distinguish between two categories of disability when they make assessments for coverage (protection) under antidiscrimination legislation, namely, the categories of immutable and elective (or voluntary) disability. As these legal theorists explain, the category of immutable disability should apply to situations in which it is not possible (at least, not at present) to eliminate the disability (where this term usually means impairment). Under these circumstances, a plaintiff should be deemed innocent and therefore deserving of support and care. The category of voluntary (elective)4 disability should, on the other hand, be used in situations where disabilities were caused, continue to exist, or have been worsened by individual voluntary conduct (Key, 1996; Tucker, 1998). The philosophical discussion of these proposed concepts is heavily laden with the language of moral judgment. In an argument about the need to ensure the integrity of the ADA and to maintain public support for that statute, Lisa Key (1996) remarked that extending protections to those people who she identifies as “voluntarily disabled” may result in “the loss of protection for those who are truly deserving” (p. 80). In another hypothetical case of a janitor with a back injury who did not attend therapy, she stated “[he] refused to help himself, while at the same time expecting others, . . . to bear the costs of accommodation” (Key, 1996, p. 82). No reason is proffered as to why the janitor may not have attended therapy. She used another hypothetical5 example of a man who sustained a spinal injury through the reckless behavior of diving in shallow water. Key’s (1996) painted a picture of an individual who failed to lift more than 30 pounds in a rehabilitation program. She concludes: “He is making an informed, conscious decision to continue living with the impairment. This is his prerogative. However, society should not be obligated to bear the cost of his choice” (p. 84).6 The perspective of Key (1996) reveals a kind of reasoning that denies the reality of competing demands and values in the lives of people with disabilities. These legal arguments occur within the politicojuridical context that disability is ontologically intolerable, a corporeal state that slips closely toward the precipice of the human underbelly. Further, I contend that this argument is underscored by the presupposition that disability is harm,7 and impairment is harmful to disabled people psychologically, spiritually. and bodily and that the existence of impairment is inherently negative. The law’s role in scaling suffering and injury according to biomedicalist perspectives can be contrasted with an alternative way of rendering suffering or more specifically injury. Emecke (2000) argued that “injury” captures those asymmetrical power relations between self-referentiality and external retort or perception, in this instance in the reasoning and pronouncements


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of courts. This conclusion finds support in the writing of Laura Rovner, a legal practitioner and academic who argues that under the ADA the disabled person carries the burden of proving that they have been harmed. To do so, the person is required to adopt a victim identity, which may not only be in conflict with her own sense of self but reinforces the very negative figurings of disablement (as weak, passive, suffering victims) that the ADA purports to challenge (Rovner, 2001, pp. 252–253). This negative clothing of disablement remains even after the litigation has ended and is difficult to shake off.

CASING DISABILITY Contestations over the meaning of disability under the ADA are exemplified in a series of cases brought in the U.S. Supreme Court in 1999 known as the mitigation trilogy.8 More recently, the High Court in Australia, in Purvis,9 was asked to decide the definition (delimitation) of disability under the Disability Discrimination Act of 1992. Disputes over the definition of disability in disability discrimination cases under domestic laws are more often than not about broader philosophical issues about where to draw a line in the sand about disability and nondisability. These disputes go to the heart of “dilemmas of difference,”10 and how archaeologies of difference are mapped. One thing that becomes clear in a number of ADA judgments is the struggles by judges to deal with the arbitrariness of impairment. In the District Court case of Lawson v. CSX Transportation (101 F.Supp.2d 1089 (S.D.Ind., 2000), this conundrum is brought to the foreground. The court argued that if it failed to account for mitigating measures taken by individuals with disability, then “all diabetics would be considered disabled . . . A diabetic whose illness does not impair his or her daily activities would therefore be considered disabled simply because he or she is diabetic” (p. 1104). Later, the judges claimed that a proposal to broaden the definition of major life activities “would open the ADA to countless potential plaintiffs who have innumerable conditions that cause their bodies to function in ways outside normal parameters, notwithstanding the condition’s impacts on the plaintiffs’ daily activities” (p. 1103–1104). Justice Antonio Scalia in Murphy v. United Parcel Service (1999) is reported to have removed his glasses to reveal his “sightlessness” and his potential inclusion as disabled when acting without the mitigation of his glasses (Wasserman, 2000). The juridical power of law and its capacity to name or erase different ways of framing disability were put to the test in a series of decisions that the U.S. Supreme Court handed down in 1999. There were three cases that altered the definition of disability under Title 1 (Employment) of the ADA. The central question in the trio of cases was whether disability should be measured in its untreated state or in light of any corrective measures that would give the appearance of normal functioning. In its examination of the meaning of the term disability in the context of the ADA, the Supreme Court held that determination of whether a person is disabled should be made by evaluating an impairment in its unmitigated state” (Sutton, pp. 2146–2147, per O’Connor). However, the majority judgment of Justice Sandra Day

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O’Connor held that “if a person is taking measures to correct for, or mitigate, a physical or mental impairment, the effects of those measures—both positive and negative—must be taken into account when judging whether that person is ‘substantially limited’ in a major life activity and thus ‘disabled’ under the Act” (p. 2146). The Court’s complicity in the semantic recuperation of what constitutes a mitigating measure may open a Pandora’s box as various courts’ attempts to discern the difference between compensatory measures and corrections. Barhorst (1999–2000) concluded, “disabled persons who must mitigate their impairment to survive will have no recourse against an employer’s decision” (p. 164). What is interesting about these cases is that they illustrate some of the ways that technological applications mediate various discourses about the ontology of disability in law, and disputes over disability discrimination enact discourses that traumatize and penalize the resistant impaired body. Such strictures require the courts to anticipate “a person’s decision whether or not to pursue medical interventions [as well as evaluate the status of] an operation [that] would have ameliorated the effects of an impairment but was rejected as too risky?” (Mayerson & Mayer, 2000). Instead of clarifying the meaning of disability, the trilogy of ADA cases (Sutton, Murphy, and Albertson) has provoked a series of new questions with respect to the technological morphing of normalcy.11 The Court in all three cases concluded that individuals who mitigate their impairments must have this factor considered when evaluation is made with respect to their coverage under the lawful disability definitions of the ADA. However, none of those cases addressed the question of whether individuals have a duty to mitigate impairment; that is, if individuals choose not to engage technologies (aids, prescriptions drugs, and so on) that seem to mitigate their impairments, should they still be considered disabled? For example, should a woman without arms be required to wear a prosthesis or have a hand transplant to be considered disabled under the ADA? While this line of argument was raised in the District Court case of Finical v. Collection Unlimited (1999),12 it was soundly rejected by the Supreme Court.13 We might extend these questions further to ask this question: will current (and future) morphing technologies contribute to the framing of a benchmark mitigated disabled body14 which is used to assess definitional conformity irrespective of the matter of usage or choice? Will today’s “normal” body be superseded, that is, become tomorrow’s “abnormal” body?

AFTERMATHS: DISABILITY AS PROVISIONAL OR TENTATIVE The ADA, as constructed by the current Court, can hardly be said to do much of anything to protect people with disabilities. Instead the Court’s activist interventionism has done a great deal to shield both private employers and public officials, in addition to denying the importance of past discrimination while preserving as much of the pre-ADA status quo as possible. The Court’s central message to people with disabilities seems to be, “Get over it.” (Soifer, 2003)


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In Australia, one method of discouraging full entry into the Australian community, complete with full rights and responsibilities, is to give certain classes of immigrants temporary visas. Likewise, other classes of immigrants who are deemed to be acceptable as new Australians have the opportunity to avail themselves of permanent resident status or indeed become a full Australian citizen. Keeping this motif in mind, disabled people, to a greater or lesser extent, are still busy articulating entitlements to full citizenship status—that is, having access to economic, political, and cultural resources available to other classes of citizens. Australia’s particular brand of welfare liberalism is characterized by a residual orientation primarily reliant on paid employment with a sharply targeted (restrictive) safety net of benefits for individuals who for no fault of their own are not in the paid workforce. The residualist approach means that even those groups provided with assistance are positioned out-of-bounds of citizenry—they are, so to speak, remainders, euphemistically labeled welfare recipients. Harris (2001) provided a definition of the “moral-behavioral dimension” of welfare rationalities as one that “revolves around constructs such as responsibility, independence, motive and effort. It embodies governmental evaluations of proper/improper and responsible/ irresponsible behaviors, suggests how people ought to behave, and sets out governmental strategies to achieve the desired ends” (p. 6). This chapter has pointed to the emergence of conceptual and judicial realities that err toward the notion of mitigated impairment in one country and is already having various ramifications in countries such as Australia and Canada. This is what has already happened. But what could happen, should the notion of mitigated impairment and its associated state of tentative or provisional disability become mainstreamed within law and service provision? The American courts, when confronted with knowledge about the fluidity of impairment and its potential unboundedness, have sought to make disability more workable by attempting to delimit and contain impairment. This lack of acceptance of impairment in its untreatable state and the consequential concept of disability as provisional or tentative reasserts the belief that disability is inherently negative—a bodily order that is waiting to be expunged. In the meantime, the mitigation compulsion leaves disabled people with the sense that the only kind of impairment acceptable is one that is veiled or hidden. Passing becomes an esteemed attribute. As Kimberlyn Leary (1999) stated: “Passing occurs when there is perceived danger in disclosure. At its most extreme, it is a form of camouflage to sequester the self from expected trauma. Its represents a form of self-protection that nevertheless usually disables, and sometimes destroys, the self it means to safeguard” (p. 85). Passing is not just about the person with an impairment hiding their impairment or morphing their disability. This strategy occurs in a culture of “ableism,” which involves a failure to ask about difference, in this instance, disability/impairment. For internalized ableism to occur there needs to be an existing a priori presumption of compulsory ableness (or at least the aspiration of ableness). Such passing is about keeping the colonizer happy by not disturbing the peace, containing the matter that is potentially out of place. The proposal to conceptualize disability as tentative or provisional, to assign it spatially to a temporary zone, should not be confused with the Jacques

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Derrida’s notion of deferability, where in our case the signifier disability has its meaning deferred for the present, still impending and awaiting (Campbell, 1999). Instead, positioning disability as tentative conjures up the notion of disability in waiting, disability standing in reserve for technologies that can restore wholeness. This view of disablement has the potential to realign social planning away from a focus on care to that of cure. A shift away from the notion of permanence may mean that governments will become hesitant to invest in long-term service provision infrastructure and cordon off citizenship rights only to those with immutable disability. The political and civil rights implications of these speculations are unimaginable—disabled people who wish to seek good fortunes are likely to feel compelled to resort to mitigation measures, lest they be prepared to feel the full weight of being assigned the label of having a voluntary disability. Hard to imagine—let us feel compelled to imagine so that we can be prepared to act.

NOTES 1. Although the alleviation of discomfort and suffering is critical, it cannot be assumed that having a disability automatically results in suffering or disease. Many of the affects of impairment are able to be adequately managed by affordable access to a range of supports, strategies, and technologies. It is too easy to assume that impairment is the source of a disability problem rather than the way society responses to impairment as a form of difference. 2. The self-understanding of impairment is very complex. It is not clear about the extent to which individual with impairments internalize the tragic scripts (known as internalized ableism) not refashion them as acts of resistance. See Campbell (2008) and Emecke (2000). 3. The 1432 sense of the word is “make mild or gentle, whereas “soft, mild” is attested to in the 1362 understanding. Online Etymology Dictionary, retrieved May 5, 2005, from www.etymonline.com/index.php?term=mitigate. 4. We can categorize three distinct groups deemed to have elective disability: (a) nonmitigators—people who choose to remain impaired; (b) disabled procreators— women who choose to bear children with disability; and (c) the transabled— able-bodied individuals who desire to be disabled. 5. It is interesting the use of “extreme” hypothetical examples as a rhetorical strategy to support an argument, which I argue serves to incite hostility toward disabled people who adopt “unpopular” approaches to living with impairment and generally distracts the reader from the core issues under consideration. 6. For a more elaborate discussion of Keys argument, see Campbell (2005a, 2005b). 7. One word for disability in French is mal, meaning “harm.” 8. Known as the mitigation of disability cases, the parameters of defining disability under the ADA have been realigned, in respect to “corrective measures” ’ to mitigate “disabling conditions”: Sutton v. United Airlines Inc, 527 U.S. 471 (1999); Murphy v. United Parcel Service, 527 U.S. 516 (1999); Albertson’s Inc v. Kirkingburg, 527 U.S. 555 (1999). I argue in addition that the disability concept is already occluded—as a prong of the definition is tied to the notion of substantially limiting a major life activity,s3 (2)(a) of the ADA. 9. Purvis v. New South Wales (Department of Education and Training), 2003 (202 ALR 133). See also Baker and Campbell (2006).


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10. See Minow, 1990, for a greater consideration of this issue. 11. At the time writing (June 2008) an ADA Amendments Act of 2008 (H.R. 3195) had passed through the House of Representatives. See the Bill Status page, www.govtrack.us/congress/bill.xpd?bill=h110-3195. 12. In one recent ADA case, the Arizona District Court upheld a claim of disability (and therefore coverage under antidiscrimination legislation) irrespective of the use of compensating/mitigating measures such as prostheses. In Finical v. Collection Unlimited, 65 FSupp 2d 1032 (1999), the plaintiff who was hearing impaired, decided against using a hearing aid on the basis that such a device picked up background noise and therefore was annoying. The defendants argued that hearing aids should be included as a mitigating measure. The court, however, held that an employee with a hearing impairment was disabled irrespective of their use of hearing devices. 13. It is beyond the purview of this chapter to explore associated argument that asks the court to look at what a similarly situated person would do. An exploration of the type of person who would be deemed an appropriate comparator should be the subject of another chapter. 14. One of the problems of operating within the duality of abled and disabled is that the boundaries between these two signifiers interpenetrate. The rise of new perfecting technologies not only reinscribes disability; in addition, the ascendancy of these technologies reinscribes normalcy (construed as that which is species-typical).

REFERENCES Barhorst, S. (1999–2000). What does disability mean: The Americans with Disabilities Act of 1990 in the aftermath of Sutton, Murphy, and Albertsons. Drake Law Review, 48, 138–171. Baker, B., & F. Campbell, (2006). Transgressing Noncrossable Borders: Disability, Law, Schooling and Nations. In S. Danforth & S. Gabel. (eds)., Vital Questions facing Disability Studies in Education, 319. Brown, W. (1993). Wounded attachments: Oppositional political formations in late modern democracy. Political Theory, 21, 20–22. Brown, W. (1995). State of injury: Power and freedom in late modernity. Princeton, NJ: Princeton University Press. Cain, M. (1994). The symbol traders. In M. Cain & M. Harrington (Eds.), Lawyers in a post-modern world (pp. 15–48). Buckingham: Oxford University Press. Campbell, F. (1999). “Refleshingly disabled”: Interrogations into the corporeality of ‘disablised’ bodies. Australian Feminist Law Journal, 77, 57–80. Campbell, F. (2005a). Legislating disability: Negative ontologies and the government of legal identities. In S. Tremain (Ed.), Foucault and the government of disability (pp. 108–130). Ann Arbor: University of Michigan Press. Campbell, F. (2005b). Selling the cochlear implant. Disability Studies Quarterly, 25(3). Campbell, F. (2008). Exploring internalised ableism using critical race theory. Disability & Society, 23(2), 151–162. Delgardo, R., & Stefancic, J. (Eds.). (2000). Critical race theory: The cutting edge, 2nd ed. Philadelphia: Temple University Press. Emecke, C. (2000). Between choice and coercion: Identities, injuries, and different forms of recognition. Constellations, 7(4), 483–495. Ewick, P., & Sibley, S. (1995). Sociology of narrative. Law & Society Review, 29, 200. Harris, P. (2001). From relief to mutual obligation: Welfare rationalities and unemployment in 20th-centruy Australia. Journal of Sociology, 37(6), 5–26. Holloway, G. (1994). Susto and the career path of the victim of an industrial accident: A sociological case study. Social Science & Medicine, 38(7), 989–997.

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Josephus, F. (1974). Jewish antiquities, xvii. v. §5 in Selections from His Works, intro and notes by Abraham Wasserstein. New York: Viking. Key, E. (1996). Voluntary disabilities and the ADA: A reasonable interpretation of “reasonable accommodation.” Hastings Law Journal, 48, 75–104. Leary, K. (1999). Passing, posing, and “keeping it real.” Constellations, 85–96. Mayerson, A., & Mayer, K. (2000). Defining disability in the aftermath of Sutton: Where do we go from here? Retrieved on November 11, 2000, from www.dredf .org/mayerson.html. Minow, M. (1990). Making all the difference: Inclusion, exclusion, and American law. Ithaca: Cornell University Press. Oliver, M. (1996).Understanding disability: From theory to practice. Basingstoke: Macmillan. Oxford English Dictionary Online (1989). 2nd Ed. Retrieved on June 7, 2004, from dictionary.oed.com/entrance.dtl. Raz, J. (1977). The rule of law and its virtue. Law Quarterly Review, 93. Rovner, L. (2001). Perpetuating stigma: Client identity in disability rights litigation. Utah Law Review, 2, 247. Sayer, N., Spoont, M., & Nelson, D. (2004). Veterans seeking disability benefits for post-traumatic stress disorder: who applies and the self-reported meaning of disability compensation. Social Science & Medicine, 58, 2133–2143. Soifer, A. (2003). Disabling the ADA: Essences, better angles, and unprincipled neutrality claims. Research Chapter 8, Boston College Law School. Retrieved from ssm.com/abstract-id=389400. Stiker, H.-J. (1999). A history of disability. Ann Arbor: University of Michigan Press. Tucker, B. (1998). Deaf culture, cochlear implants, and elective disability. Hastings Centre Report, 28, 6–14. Wasserman, D. (2000). Stigma without impairment: Broadening the scope of disability discrimination law. In L. Francis & A. Silvers (Eds.), Americans with disabilities: Implications of the law for institutions and individuals. New York: Routledge.

CHAPTER 20

Disability in Kenya: A Situational Analysis Edward O. Manyibe, George I. Mamboleo, George C. T. Mugoya, and Charlene M. Kampfe

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everal countries in the world have recently made significant strides in addressing disability issues with a view to promoting the inclusion of persons with disabilities in economic, social, and political processes of their countries. Kenya, a developing country in the East African region, is one of the countries where disability issues have began to receive wider attention due to local and international efforts toward an inclusive society. The purpose of this chapter is to familiarize the reader with the situation of people with disabilities in Kenya by reviewing some of the new programs and legislation that have been introduced in the country. Challenges and recommendations are provided. An overview is provided of the geographical, economic, cultural, and governance structures of the country to provide a framework on which disability is perceived, appreciated, and promoted in Kenya. It is our hope that this chapter will stimulate the reader’s interest in disability issues not only in Kenya but also in Africa as a whole.

GEOGRAPHICAL AND ECONOMIC SITUATION Kenya is one of the countries in East Africa bordering Ethiopia to the north, Sudan to the northwest, Uganda to the west, Tanzania to the south, and Somalia to the east. It has 248.55 miles of Indian Ocean shoreline to the southeast. Kenya covers an area of about 224,901.3 square miles (Central Bureau of Statistics [CBS], 2006; Kiima, Njenga, Okonji, & Kigamwa, 2004). The population of Kenya was estimated to have reached 36.9 million in 2007 (Library of Congress, 2007), but the growth rate is projected

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to decline from 3.6 percent in 1992 to 1.4 percent by 2015. The current estimated life expectancy at birth is 55 years (Central Intelligence Agency, 2006). The population distribution ranges from 596 persons per square mile in high agriculturally productive areas to 8 persons per square mile in arid areas (Central Intelligence Agency, 2006). Kenya has the most vibrant economy in the East African region and is considered to be the regional hub for trade and financing (Central Intelligence Agency, 2008). Agriculture is the mainstay of Kenya’s economy and contributes about 26 percent of the gross domestic product (GDP). The manufacturing sector, the second largest contributor to the economy, accounts for about 13 percent of the GDP (CBS, 2006; Library of Congress, 2007). Kenya’s economy has had mixed performance since the country earned independence in 1963. For example, between 1980 and 2000, economic growth was 2.5 percent, whereas in 2000 it had a negative growth of –0.3 percent. In 2006, the GDP grew by 5.8 percent, up from 4.9 percent the previous year (CBS, 2006; Central Intelligence Agency, 2007; Library of Congress, 2007). Due to fluctuations in the GDP and increase in population, poverty levels have dramatically increased. It has been estimated that the population in absolute poverty rose from 44.7 percent in 1997 to 52 percent in 2002 (Government of Kenya, 2004a, 2005). Despite the widespread poverty, Kenya has the best transportation, communications infrastructure, and trained personnel in the East African region (CBS, 2006; Central Intelligence Agency, 2008; Library of Congress, 2007).

ETHNICITY AND LANGUAGE Kenya is a multiethnic country with about 43 ethnic groups, each with its own unique language. These ethnic groups are broadly divided into three linguistic classifications: Bantus, Cushites, and Nilotes (Finke, 2006). There are also Kenyans of American, Arabic, Asian, and European origin, plus a number of Africans who have become citizens of Kenya. The major ethnic communities in Kenya are: Kikuyu accounting for about 21 percent of the total population, Luhya 14 percent, Luo 13 percent, Kalenjin 11 percent, Kamba 11 percent, Kisii 6 percent, Meru 5 percent, Asian, European, and Arab 1 percent (CBS, 2006; Central Intelligence Agency, 2007; Library of Congress, 2007; Macha, Kieti, & Ngunyi, 2007). English is the country’s official language, while Kiswahili is the national language. In addition to these two languages, most Kenyans speak a local ethnic language (U.S. Department of State, 2006).

CULTURAL AND RELIGIOUS BELIEFS Kenya is both a multicultural and multireligious society. Each of the 43 ethnic groups has its own unique cultural beliefs. In terms of religion, Christianity is the largest, accounting for about 70 percent, Islam 7 percent, and other religions (e.g., Indigenous and Hindu) accounting for 23 percent

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(CBS, 2006; Central Intelligence Agency, 2007; Kiima et al., 2004; Library of Congress, 2007; Macha et al., 2007).

GOVERNANCE Kenya consists of three arms of government: the executive, the legislature, and the judiciary. The executive arm, consisting of the president and the cabinet, is responsible for initiating and directing national policy. The legislature, also known as Parliament or the National Assembly, is responsible for making new laws. The judiciary is involved with determining the common law and interpreting statutes. Administratively, Kenya is divided into eight administrative provinces (Rift Valley, Nyanza, Eastern, Western, Coast, Central, North Eastern, and Nairobi), which are divided into districts. The districts are subdivided into divisions, which are further subdivided into locations and sublocations (Government of Kenya, 1998).

DISABILITY IN KENYA Disability is a new area of discourse in many developing countries (Venter et al., 2002), including Kenya. Thus, information on incidence, causes, and types of disabilities is rarely available. For example, there are no specific statistics showing the exact number of people with disabilities in Kenya. However, based on estimates, the number of persons with disabilities in Kenya is approximately 3,280,000 (Macha et al., 2007). According to available estimates, between 294,000 and 441,000 people in Kenya have disabilities as consequences of complications during pregnancy and childbirth (Government of Kenya, 2005). By 2003, about 78,000 children with special needs had been identified at various assessment centers (Kenya Institute of Education, 2006). Historically, disability in Kenya has been shrouded in mystery. As a result, Kenyan communities have often used their cultural belief systems to explain and understand disability. Although Kenya is a multicultural country with several ethnic communities, each having its own unique culture (Finke, 2006; Kiima et al., 2004; Library of Congress, 2007), cultural beliefs about the causes of disability and treatment are to a large extent similar (Kiima et al., 2004; Ogechi & Ruto, 2002). Cultural explanations of causes of disability include (a) witchcraft, (b) a curse from god or ancestors, (c) a manifestation of supernatural powers, and (d) a punishment to atone for the sins committed by the clan, parents, or relatives (Manyibe, 2006; Kiima et al., 2004; Ogechi & Ruto, 2002). Some of these beliefs, occasioned by ignorance, superstition, fear, stigma, hostility, discrimination (Macha et al., 2007; Ogechi & Ruto, 2002), and negative attitudes toward persons with disabilities (Macha et al., 2007) and their families, are social factors that have historically acted against inclusion and participation of persons with disabilities in their progress. In Kenya, cultural and religious beliefs are most often used to explain causes of disability in instances where there are no clear explanations (Nicholls, 1993; Ryan & Smith, 1989). Cultural beliefs also play an important role

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both in the determination of who is considered to have a disability and the way such persons are perceived and treated in Kenya. For example, among the Kisii people, a woman with a physical disability who is married and has children is not viewed as having a disability. However, a woman with no disability who is infertile will be considered as having a disability (Ogechi & Ruto, 2002). According to Ogechi and Ruto, “disability goes beyond the concrete/visible impairment as it calls for an explanation of its probable causes” (p. 64). Apart from cultural explanations of causes of disability, disabilities in Kenya are generally caused by diseases such as malaria, measles, congenital diseases, leprosy, HIV/AIDS, and polio, among others. Other causes include land clashes, ethnic strife, violence (including police brutality), malnutrition, accidents (e.g., road, domestic, air, and water), and medical errors (Manyibe, 2006; Ogechi & Ruto, 2002).

INTERVENTIONS AND CHALLENGES A variety of interventions have been used to address issues of disability in Kenya. Such interventions are aimed at empowering people with disabilities, their families, organizations of persons with disabilities (DPOs), professionals, media organizations, and policy makers, among others. Interventions may focus on legislation and policy, capacity building, awareness creation, and provision of services. Because disability interventions in Kenya are broad and take a variety of approaches, our discussion will not include strategies based on direct service provision given that our focus is to provide a situational analysis of disability situation in Kenya. We thus limit the discussion to the following: poverty alleviation, legislation, education, policy, DPOs, and international agencies.

Poverty Alleviation Strategies Disability and poverty are often intertwined (Elwan, 1999; Raijmakers, n.d.; Sandhu, Saarnio, & Wiman, 2001; Thomas, 2005; Venter et al., 2002; World Bank, 2004). Poverty can cause disability through unsafe living conditions, malnutrition, or poor health care (United Nations, 2007; World Health Organization, 2004). Poverty is generally widespread in Kenya (International Monetary Fund, 2005; Njenga, 2005). In 2004, more than 56 percent of all Kenyans lived below the country’s own established national poverty line. The government recognizes the relationship between poverty and disability in its Poverty Reduction Strategy Paper (PRSP) of 2005 (International Monetary Fund, 2005). However, apart from formulating this policy, there is no budgetary allocation for disability specific poverty reduction programs and no indication of the targets to be achieved. Moreover, people with disabilities are only mentioned under the vulnerability program that also refers to orphans, the youth, and women (International Monetary Fund, 2005). Since independence, Kenya has taken several measures to alleviate poverty. A few of these efforts have been aimed at the inclusion of persons with disabilities

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in society. A brief discussion of some of the most recent poverty eradication efforts follows.

The Constituencies Development Act of 2003 The Constituency Development Act of 2003 created the Constituency Development Fund (CDF). The fund was established as a government initiative to transfer resources to the rural areas as a strategy to eradicate poverty and involve people at the grassroots level for self-determination. The Constituencies Development Fund Act, which created the CDF, however, does not mention persons with disabilities (Macha et al., 2007), thus marginalizing them from the development processes that affect their daily lives and further perpetuating poverty in this group.

UN Millennium Development Goals (MDGs) Kenya joined the rest of the world in 2000 to recognize the importance of the MDGs as an opportunity to address the welfare of the poor and disadvantaged groups. Kenya developed a policy paper to guide the country in achieving its MDG targets, which included eradication of poverty and free primary school education. Unfortunately, disability is just briefly mentioned in the policy paper. There are no clear guidelines regarding how people with disabilities will be involved to achieve stated targets (Government of Kenya, 2005; Macha et al., 2007). Generally, to eradicate poverty, issues of both disability and participation of persons with disabilities should be promoted, guaranteed, and entrenched in policy documents and programs. Prioritizing disability issues and involving persons with disabilities in poverty reduction interventions is compelling because (a) poverty and disability are interlocked, (b) disabilities are a crucial factor of excessive poverty, (c) persons with disabilities can contribute tremendously to economic security, and (d) persons with disabilities are among the most marginalized in terms of the economic and social development of their communities (Elwan, 1999; Sandhu et al., 2001; Thomas, 2005; Venter et al., 2002; World Bank, 2004).

Disability Legislation Persons with disabilities often face physical and social barriers that hinder their equal social participation and enjoyment of their human rights (Morumbasi, Mbatia, Tororei, Kamau, & Burugu, 2007). These barriers prevent persons with disabilities from fully realizing their social, economic, and political potential. One way to remove these barriers is through legislation (International Labor Organization, 2004; Morumbasi et al., 2007). Examples of laws that provide some form of protection for people with disabilities in Kenya include: • The Constitution, 1963 • Persons with Disabilities Act (PDA), 2003 • Law of Succession Act, 1981, Cap 160

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National Social Security Fund Act, 1965, Cap 258 Registered Land Act, 1963, Cap 300 Land (group Representatives) Act, 1968, Cap 287 Workmen’s Compensation Act, 1949, Cap 236 Sexual Offences Act, 2006, Cap 3 Constitution of Kenya Review Act, 2001.

A brief discussion of the PDA is provided here because it is the most recent and most comprehensive disability legislation in Kenya. The fundamental purpose of PDA is to protect persons with disabilities against discrimination and also enable them to realize their full potential, independence, productivity, and unbiased mainstream social participation in the least restrictive environment (Government of Kenya, 2004b). The act defines disability as “a physical, sensory, mental or other impairment, including any visual, hearing, learning, or physical incapability, which impacts adversely on social, economic or environmental participation.” The PDA has several provisions aimed at including people with disability in the mainstream social, economic, and political processes of the country. For example, Part III covers the rights and responsibilities of persons with disabilities and prohibits all forms of discrimination in employment, education, health, and accessing services. The PDA also calls for an environment that is accessible to persons with disabilities (i.e., the “least restrictive” environment that is possible given the level of disability that is experienced). The PDA provides for a variety of benefits and incentives for people with disabilities and employers. For example, under the law, employees with a disability are exempted from tax on all income from their employment. Persons with disabilities who receive an income can also apply for exemption from income tax and any other levies on such income. In addition, private employers who engage a person with disabilities with required skills or qualifications are entitled to apply for a deduction from their own taxable income, equivalent to 25 percent of the total amount paid as salary and wages to such an employee. To protect abuse of such incentives, employers are required to show evidence (a) that the person with a disability is employed at the employer’s place of business, (b) that the employee is registered with the National Council for Persons with Disabilities, and (c) that the employee possesses requisite skills and qualifications. Under the PDA, employers who improve or modify their physical facilities to provide reasonable accommodations for employees with disabilities are entitled to apply for an additional deduction from their net taxable income. The deduction should be equivalent to 50 percent of the direct costs of improvements, modifications, or special services (Government of Kenya, 2004b). Materials, articles, and equipment that are modified or designed for the use of people with disabilities are exempted from all taxes or charges and any other government levy deemed to increase their cost. These exemptions also apply to goods, items, implements, or equipment donated to institutions or DPOs (Government of Kenya, 2004b). Although the PDA provides for the rights of persons with disabilities, the law does not set the necessary structures for the realization of these rights

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(Mbaru-Mwangi, 2006). Furthermore, its implementation has been slow (SHIA, 2006). Consequently, it has been argued that people with disabilities continue to be relegated to the margins of the mainstream society and denied their human rights (Macha et al., 2007; Morumbasi et al., 2007; United Nations, 2006. Another important provision of PDA is the establishment of the National Council for Persons with Disabilities (NCPWD) that is mandated to provide direction on issues of disabilities (Government of Kenya, 2004b; Macha et al., 2007). The primary source of funding for the council’s operations is the central government through a Parliament vote. The council can also fundraise locally or internationally for the singular purpose of carrying out its mandate (Government of Kenya, 2004b). The NCPWD is composed of up to 27 members appointed by a cabinet minister. The council members include eight representatives of DPOs, nine government officials, three representatives from organizations providing services to persons with disabilities, and two representatives from employers’ and workers’ organizations (Government of Kenya, 2004b; International Labor Organization, 2004; United Nations Development Program, 2007). The minister appoints two of the members as the chairman and vice-chairman. At least one member who represents the Ministry of Education should be a child psychologist (Government of Kenya, 2004b). The functions of NCPWD include but are not limited to formulation and development of policies to ensure equal opportunities for persons with disabilities; registration of persons with disabilities and institutions or organizations that provide services for them; provision of advice to the minister on international treaty or agreement relating to disability and how they can be localized to the Kenyan situation; encouragement of community-based rehabilitation for people with disabilities; coordination and/or implementation of programs providing services for people with disabilities; provision of assistive devices to persons with disabilities; implementation of the rights of persons with disabilities covered in the act; and formulation and development of measures and policies designed to ensure that persons with disabilities are educated, employed, and participate fully in sporting, recreational, and cultural activities (Government of Kenya, 2004b; International Labor Organization, 2004).

Policy Initiatives Given that historically people with disabilities have been relegated to the margins of society, effort should be made to encourage, initiate, and fund policies that create opportunities for people with disabilities to realize their full potential through participation in development processes. In recognition of the important role policies play in providing a framework for implementing programs targeting vulnerable groups in society, such persons with disabilities, several policy initiatives have been put into place by both the government and civil society. Some of the policies include the National Disability Manifesto, the National Disability Strategic Plan, and labor laws. A brief description of these laws and policies follows.

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The National Disability Manifesto, 2007 Prior to the 2007 general elections in Kenya, the disability movement in Kenya mobilized various actors (i.e., political parties, government, and media) to advocate for governance that promotes the needs and aspirations of all people with disabilities. The disability community in Kenya demanded that all political parties include an affirmative action provision in their manifestos that clearly indicated the steps the parties would take to ensure that people with disabilities are included in the decision-making organs of the government. The Disability Manifesto is a not a legal document and therefore not legally binding, which implies that it may not be an effective instrument to facilitate the implementation of the PDA without government support and willpower. These shortcomings notwithstanding, the manifesto remains an important reference for monitoring the progress toward inclusive governance in Kenya (Macha et al., 2007; United Nations Development Program, 2007).

National Disability Strategic Plan The NCWPD with the support of UN Development Program in Kenya, developed a strategic plan for 2007 to 2012 to facilitate the implementation of PDA. The strategic plan covers eight core strategies to (a) formulate, design, and develop policies and measures that will guide the operations of the NCWPD until 2009; (b) mobilize and generate adequate resources for council activities; (c) support research and provide accurate information on disability to the public for policy and planning; (d) develop mechanisms to facilitate the registration of individuals, groups, and organizations as well as places and institutions providing services to people with disabilities; (e) strengthen the capacity of DPOs, institutions, and individuals with disabilities to influence and monitor delivery of services; (f) constitute a board of trustees to oversee council resources; (g) promote and facilitate the mainstreaming of people with disabilities in social and economic development through financing income-generating projects; and (h) enforce adjustment orders to premises, services, and amenities as provided for in PDA Section 24 (Government of Kenya, 2004b, 2006).

Labor Laws Effective labor laws are necessary to ensure access to employment of people with disabilities, which will enable them to enjoy political, social and economic rights (International Labor Organization, 2004). However, existing labor laws in Kenya do not adequately address the employment needs of persons with disabilities, resulting in their marginalization and discrimination in employment. Most labor laws (such as the Employment Act of 1976, the Wages and Regulations of Employment Act of 1951, the Trade Disputes Act of 1979, the Workmen’s Compensation Act of 1949, the Trade Unions Act of 1952, the Factories Act of 1971, the National Social Security Fund Act of 1975, and the Industrial Training Act of 1960) just mention people with disabilities, an indication of the peripheral position they occupy in the labor market (International Labor Organization, 2004). Leaving persons with

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disabilities out of these important pieces of legislation may exacerbate employment-based discrimination, which is unfortunate because employment is an important aspect of economic empowerment and is closely linked to social inclusion (International Labor Organization, 2004).

INTERNATIONAL DEVELOPMENT AGENCIES Development agencies, in partnership with the government and local DPOs, are important participants in the disability movement in Kenya. International development agencies such as U.S. Agency for International Development, Japanese International Development Agency, Department for International Development, Swedish International Development Agency, Leonard Cheshire International, Sense International, Handicap International, and Volunteer Services Overseas have provided financial and logistical support to disability initiatives in Kenya. International development agencies, for example, funded the National Disability Conference in January 2004, the first of its kind in Kenya. The main focus of international agencies is building the capacity of DPOs. Capacity development is a process that increases DPOs’ skills to plan, implement, monitor, and evaluate their work. Capacity building may focus on how to involve communities in promoting the social, cultural, economic, civil, and political rights of persons with disabilities by drawing on national and international policy and legislative instruments. Although development partners have played a key role in improving economic and social conditions for people in developing countries, they have been criticized for imposing conditions on their support (Brock-Utne, 1995). More often than not, these conditions do not take into account the recipient country’s cultural, social, economic, and political situation, thus generating conflicts and resulting in failure to meet targeted goals. For example BrockUtne (1995) noted that: Aid to African education often involves the imposition of conditions that create dependency and undermine Indigenous educational patterns. Such conditions can include the insistence on textbooks written and published abroad, the use of examination systems devised in Europe or North America, and the neglect of African culture and languages. (p. 177)

To ensure that international agencies succeed in Kenya, it is important that they consult with local leadership and include beneficiaries of programs in the planning, implementation, monitoring, and evaluation processes. This approach will both encourage ownership of the programs and also empower community members with tools of decision making and program management.

SPECIAL EDUCATION There are no reliable data on the number of children with disabilities in Kenya. However, there is no contention that the number of children who

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need special education services has been increasing over the years. By 2003, about 78,000 children with special needs had been identified at various assessment centers (Kenya Institute of Education, 2003). Recognizing the increased need for special education, the government established a special education division within the Kenya Institute of Education (KIE) in 1978. In 1986, the government established the Kenya Institute of Special Education (KISE); in 2003, when the government introduced free primary education, it implemented the policy of inclusion in schools (KIE, 2006; Morumbasi et al., 2007). Although the government of Kenya supports the education of children with disabilities, the needs of children with disabilities are largely unmet. Special schools and units only cater to a small fraction of children with special needs such as those with hearing, visual, mental, or physical disabilities. The needs of children with autism, specific learning difficulties, and communication disorders receive little attention. The unavailability of adequate data on children with special needs; unclear inclusive education policy; poorly trained, underpaid, and overworked teachers; inappropriate or lack of infrastructure; disjointed service provision; inappropriate placement of children with disabilities; poor management of special education programs; inadequate assistive devices to accommodate the various needs of children with special needs; and unavailability of sufficient teaching and learning materials due to financial constraints are some of the challenges of special education programs in Kenya (Anderson, 2000, 2004; Government of Kenya, 2005; Library of Congress, 2007). One study that examined the aims of special education in Kenya found that there was an ongoing emphasis on control, containment, and care (Muuya, 2002) and that teachers seldom engaged in imparting knowledge about personal care and fitting into society. Preparing children to be competitive in employment was not found to be a priority for the teachers who participated in the study (Muuya, 2002; Singal, 2007). Generally, children with disabilities in Kenya remain left out of the mainstream education system.

DPOS AND CAPACITY DEVELOPMENT A number of DPOs that address disability issues exist in Kenya. Although DPOs can be found operating in most parts of the country, most of them tend to operate at the national level. These DPOs have and continue to play an important role in making sure that the voice of people with disabilities is heard. For example, the enactment of the PDA could not have been possible were it not for these organizations. DPOs serve people with various disabilities and their objectives vary. Most of the DPOs generally facilitate policy and advocacy. They also provide a variety of services such as training and employment, education, health care, and assistive devices. Examples of DPOs in Kenya include: Kenya National Association of the Deaf, Kenya Society for the Mentally Handicapped, Kenya Society for the Blind, Kenya Union of the Blind, Association of the Physically Disabled of Kenya, Union of the Persons with Disabilities of Kenya, Kenya

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Society for the Deaf Children, Association for the Physically Disabled, Handicapped Mobility Appliances, and the United Disabled Persons of Kenya. Although these organizations play an important role in the inclusion of people with disabilities, DPOs are faced with a plethora of challenges, such as limited funding and inadequately trained professionals to address the complex nature of disability. For the disability movement in Kenya to influence national policy and also attend to the needs of their members, the need to build their capacities becomes not only compelling but imperative. Building the capacities of DPOs and people with disabilities would require investment in a number of areas such as enhancing knowledge, project management, policy and advocacy, decision making, fundraising, networking, and effective media engagement.

CONCLUSION Kenya has made some commendable steps toward inclusion of persons with disabilities. Despite the gains made, a majority of persons with disabilities are impoverished and marginalized. To move expeditiously toward a truly inclusive Kenya, we make the following recommendations. Owing to the prevailing negative attitudes and stereotyping of persons with disabilities in Kenya, there is need for disability awareness across the country to demystify disability. This calls for the involvement of the public, civil society, and the private sectors to work together to carry out awareness that promotes inclusion of people with disabilities in all spheres of society. Mainstreaming of disability, which has been defined as a strategy for incorporating the concerns and experiences of people with disabilities in the design, implementation, monitoring, and evaluation of policies and programs in all development processes (Miller & Albert, 2005), should be prioritized. This means that current and future economic, social, political, and cultural development processes should prioritize the disability agenda. For example, policies and programs aimed at alleviating poverty such as those listed in this chapter should be strengthened or revised to include specific disability issues. Lessons learned from other marginalized groups such as women would be invaluable in informing the disability movement in Kenya. The government, in partnership with local and international agencies, should work together to revise laws, policies, and programs to incorporate the aspirations, needs, and rights of persons with disabilities by localizing international disability standards such as the UN Standard Rules of Equalization of Opportunities for Persons with Disabilities. Adapting the international disability standards would indicate that there is political will to take action for the equalization of opportunities for persons with disabilities. The UN standard rules, for instance, provide the government and developmental organizations in the country with a framework for policy making and programming for persons with disabilities and their organizations. Moreover, the rules provide a basis for technical and economic partnership between Kenya and its international development partners, such as the United Nations (United Nations, 2006).

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There is need for an emphasis on promotion of employment of persons with disabilities. Some of the strategies that can be used to accelerate the employment of people with disabilities include (a) community rehabilitation programs that have the capacity to promote employment of persons with disabilities, (b) education of employers to become advocates of people with disabilities, and (c) the provision of government funds for organizations of people with disabilities. In the same vein, the focus of special education should be broad based and balanced and should emphasize the preparation of children with disabilities for higher education and employment. Higher institutions of learning such as universities and tertiary colleges should establish programs that focus on disability studies. One of the challenges in Kenya is inadequate number of professionals in the field of disability. Rehabilitation counselor training programs, for example, would play an important role in human resource development in the field of disability. Emphasis also needs to be placed on the prevention of disabilities. The government of Kenya has done well in combating polio through polio prevention campaigns. Some areas of focus for future efforts should include prevention of malaria, HIV/AIDS, road accidents, and ethnic conflicts and violence such as that witnessed after the 2007 general elections. In summary, although there is an effort toward the fulfillment of the equal rights, equal opportunity, and full participation of people with disabilities in Kenya, much needs to be done. With the enactment of the PDA, there is a ray of hope for persons with disabilities who are relegated to the margins of society in achieving their full potential.

REFERENCES Anderson, D. W. (2000). Special education needs and services in Kenya. Division of International Special Education and Services Journal, 3, 27–33. Anderson, D. W. (2004, November 13). Human rights and persons with disabilities in developing nations of Africa. Paper presented at Fourth Annual Lilly Fellows Program National Research Conference on Christianity and Human Rights, Sanford University Birmingham, AL. Brock-Utne, B. (1995). Cultural conditionality and aid to education in East Africa. International Review of Education, 41, 177–197. Central Bureau of Statistics. (2006). Kenya facts and figures. Retrieved January 20, 2008, from www.cbs.go.ke. Central Intelligence Agency. (2006). Kenya profile. Retrieved January 19, 2008, from www.state.gov/outofdate/bgn/k/75622.htm. Central Intelligence Agency. (2008). The world factbook—Kenya. Retrieved January 20, 2008, from www.cia.gov/library/publications/the-world-factbook/geos/ ke.html. Elwan, A. (1999). Poverty and disability: A survey of the literature. Retrieved February 20, 2008, from siteresources.worldbank.org/INTPOVERTY/Resources/ WDR/Background/elwan.pdf. Finke, J. (2006). Kenyan history. Retrieved February 19, 2008, from www.bluegecko .org/kenya. Government of Kenya. (1998). The constitution of Kenya. Retrieved February 10, 2008, from kenya.rcbowen.com/government/#parliament.

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Government of Kenya. (2004a). Investment program for the economic recovery strategy for wealth and employment creation: 2003–2007. Poverty reduction strategy paper submitted to the IMF. Retrieved January 25, 2008, from www .ke.undp.org/ERS.pdf. Government of Kenya. (2004b). Kenya Gazette Supplement Acts, 2003. Nairobi: Government Printer. Government of Kenya. (2005). Millennium development goals in Kenya: Needs and costs. Retrieved February 18, 2008, from www.ke.undp.org/KenyaMDG NeedsAssessment.pdf. Government of Kenya. (2006). National Council for Persons with Disabilities: Strategic plan: 2006–2009. Retrieved May 23, 2008, from www.ke.undp.org/ DisabilitiesStrategicPlan.pdf. International Labor Organization. (2004). Kenya country profile: Employment of people with disabilities: The impact of legislation (E. Africa). Retrieved December 19, 2007, from www.ilo.org/public/english/employment/skills/disability/ download/cpkenya.pdf. International Monetary Fund. (2005). Kenya: Poverty reduction strategy paper. IMF country report. Retrieved January 26, 2008, from www.imf.org/external/pubs/ ft/scr/2005/cr0511.pdf. Kenya Institute of Education. (2006). Who we are. Retrieved February 18, 2008, from www.kie.go.ke/aboutus.html. Kiima, D., Njenga, F., Okonji, M., & Kigamwa, P. (2004). Kenya mental health country profile. International Review of Psychiatry, 16, 48–53. Library of Congress. (2007). Country profile: Kenya. Retrieved January 10, 2008, from lcweb2.loc.gov/frd/cs/profiles/Kenya.pdf. Macha, E., Kieti, M., & Ngunyi, M. (2007). State of disabled people’s rights in Kenya (2007) report. Retrieved January 20, 2008, from www.bluegecko.org/kenya. Manyibe, E. O. (2006, June). Disabilities: The African experience from a rehabilitation perspective. Poster session presented at the national meeting of the Canadian Association of Rehabilitation Professionals, Montreal. Mbaru-Mwangi, M. (2006). Women with disabilities and sexual violence in Kenya. Retrieved January 15, 2008, from www.pambazuka.org/en/category/features/34364. Miller, C., & Albert, B. (2005). Mainstreaming disability in development: Lessons from gender mainstreaming. Retrieved May 21, 2008, from http://www .disabilitykar.net/docs/gender.doc. Morumbasi, M., Mbatia, P. N., Tororei, S., Kamau, P. M., & Burugu, S. K. (2007). A study of methods and processes for improving the quality of life of persons with intellectual disabilities: Kenyan national report. Retrieved December 20, 2007, from www.inclusion-international.org/site_uploads/File/KenyanNationalReportFullversion.pdf. Muuya, J. (2002). The aims of special education schools and units in Kenya: A survey of headteachers. European Journal of Special Needs Education, 17, 229–239. Nicholls, R. W. (1993). An examination of some traditional African attitudes towards disability. In B. L. Mallory (Ed.), Traditional and changing views of disability in developing societies: Causes, consequences, cautions (pp. 25–41). Washington, DC: National Institution on Disability and Rehabilitation Research. Njenga, A. (2005). The UNESCO/OECD early childhood policy review project: The background report of Kenya. Retrieved February 19, 2008 from unesdoc .unesco.org/images/0013/001390/139027e.pdf. Ogechi, N. O., & Ruto, S. J. (2002). Portrayal of disability through personal names and proverbs in Kenya: Evidence from Ekegusii and Nandi. Stichproben: Wiener Zeitschrift für kritische Afrikastudien, 3, 63–82.

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Raijmakers, M. (n.d.). Impaired millennium development goals? Why the millennium development goals will fail. Retrieved February 10, 2008, from www.dcdd.nl/ data/1128958350602.pdf. Ryan, A. S., & Smith, M. J. (1989). Parental reactions to developmental disabilities in Chinese-American families. Child and Adolescent Social Work, 6, 283–299. Sandhu, J. S., Saarnio, I., & Wiman, R. (2001). Information and communication technologies and disability in developing countries: A technical note. Retrieved February 14, 2008, from siteresources.worldbank.org/DISABILITY/ Resources/ 280658-1172609480904/InformationCommSandhu.pdf. SHIA. (2004). HIV/AIDS and disability: Including persons with disabilities in HIV/ AIDS programmes. Retrieved December 29, 2007, from www.afri-can.org/ hivaids_and_disability_kenya_2006.doc. Singal, N. (2007). Conceptualizing disability and education in the South: Challenges for research. Retrieved February 13, 2008, from www.educ.cam.ac.uk/recoup/ combinedWP10-NS.pdf. Thomas, P. (2005). Disability, poverty, and the millennium development goals: Relevance, challenges, and opportunities for DFID. Retrieved February 6, 2008, from www.disabilitykar.net. United Nations. (2006). The standard rules on the equalization of opportunities for persons with disabilities. Retrieved April 15, 2008, from www.un.org/esa/ socdev/enable/dissre00.htm. United Nations. (2007). Overview of international legal frameworks for disability legislation. Retrieved February 12, 2008, from www.un.org/esa/socdev/enable/ disovlf.htm. United Nations Development Program. (2007). Disability manifesto Kenya 2007– 2012. Retrieved January 20, 2008, from www.kenyaelections2007.org/docs/ disability%20manifesto%20print%20version.pdf. U.S. Department of State (2006). Background note: Kenya. Retrieved January 20, 2008, from /www.state.gov/r/pa/ei/bgn/2962.htm. Venter, C., Savill, T. Rickert, T., Bogopane, H., Venkatesh, A., Camba, J., et al. (2002). Enhanced accessibility for people with disabilities living in urban areas. Retrieved December 18, 2007, from www.globalride-sf.org/images/DFID.pdf. World Bank. (2004). Poverty reduction strategies: Their importance for disability. Retrieved February 26, 2008, from siteresources.worldbank.org. DISABILITY/ Resources/280658-1172608138489/PovertyReductionBonnel.pdf. World Health Organization. (2004). CBR: A strategy for rehabilitation, equalization of opportunities, poverty reduction and social inclusion of people with disabilities. Retrieved on February 11, 2008, from whqlibdoc.who.int/publications/ 2004/9241592389_eng.pdf.

CHAPTER 21

Changing the System: “Strong Indigenous Women—We are the Voice” Robyn Burnett

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say my story is probably a little bit unique as I’m Aboriginal. Our particular service, the service that I work for, is classified under a special category within the Child Care Act as a mobile service in Australia. Because we pick up Indigenous children, our service uses a 22-seat bus. We pick children up and we drop them at home as a part of having our education program. As part of that service, I was a kindergarten assistant. Regarding my injury, I was filling up our bus with fuel when I slid on diesel fuel and just kept going. Although it was one incident that caused these problems, I have several parts to my injury, or I should say I have multiple injuries. My right wrist has a soft tissue injury—a right radial nerve compression. A nerve was caught and pinched between tendons where they come together at the wrist. I’ve also lost strength in my right thumb—a condition known as de Quervain’s tendonitis.1 When I landed on the ground, I basically landed between the base of my thumb and my wrist, so that took all of the force on that one side. I also injured my shoulder. In addition, I aggravated my lumber sacral spine. Now I have a degeneration of cervical spine and aggravation of the patella femoral joint. I actually injured the meniscus cartilage in my left knee, on which they had to operate. I also hurt my hip. All of these injuries in addition to the effects these injuries have had on me physically, economically, and emotionally have been trying. Most of those problems, I think, are the result of being on the job when my accident occurred—I have had to deal with Work Cover.2 As an Aboriginal woman, I found dealing with the Work Cover system very hard. They do not have any Indigenous caseworkers that could have

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helped bridge the gap between Work Cover and me. I actually asked for an Indigenous caseworker. In my experience, I’ve found there are some people who tend to be a little bit racist when you tell them that you’re Indigenous. I was very concerned about the treatment I received from my caseworker particularly. It wasn’t positive. I had to change over from one caseworker to another. The first caseworker was fine; the second caseworker was shocking. Ironically, I got the second caseworker when I asked for the Indigenous representative or caseworker. In my mind, I think that if I’m not happy with something, surely there should be someone at Work Cover that I can request to talk to. When I made the request, they turned around and said, “Well, there’s a book on grievances and procedure, you should have followed that.” I asked, “What book?” I’d never received a book. I was never given a book. I’d never been given anything. Initially I was off work for seven months; I had an operation during that time on my knee. I worked with young children, three to five years of age, so under my duty of care, my knee injury prevented my return to the workplace because I could not carry out my duties. There was also a lack of communication between Work Cover and my workplace. As I understand it, my workplace was to initiate and support my rehabilitation. But my employer did not have a rehabilitation officer. I complained about it and reported it to Work Cover, but nothing was done. All Work Cover said to me was, “It’s not our job to do anything about it.” I told my employer, my workplace, that it was their responsibility to have a Work Cover rehabilitation officer since they had over 30 employees. In return, I got told I was wrong. I know the act and I know what it says, and I’m very disappointed because I feel that Work Cover, first of all, let me down. Work Cover put all these things in place where there’s got to be an OT [occupational therapist] report, you’ve got to go to all these doctors and everything, but all those recommendations go through your workplace, and without a Work Cover rehabilitation officer, they’re totally ignored. They, where I work, can’t see that they should have to do it. So I’m very angry . . . then that starts my frustration and starts my depression—which Work Cover doesn’t want to know about. So there’s actually a position called a rehabilitation coordinator that goes out to your workplace where you are employed, and says, “Okay, we’ve now received the OT report, these are the recommendations.” The rehabilitation coordinator says, “As the employer, these are your responsibilities.” Work Cover then gives them a time frame to implement the recommendations. It’s not fair on the client, like me, to continue to jump every time Work Cover says jump and you go to a doctor’s appointment, but Work Cover is not backing me up and they’re not following it up. I’m doing everything that they’re asking and I’m trying to cope, not only in my workplace but also in day-to-day living. Then there’s your life, my life, at home—extra stress on the family because I’m unable to fulfill a lot of things. So even though it’s a work-related injury, the issue actually affects my whole life, and none of that is taken into consideration. There was a split between the two Work Cover doctors where one said, “Splint it,” and the other said, “No, it needed surgery.” The dispute over

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my wrist almost went to the medical assessment tribunal because both those specialists know each other, and they were arguing over what actually needed doing. It was totally frustrating. And it’s depressing! It’s the total incapacity of being unable to be in control of your body and your own outcomes. That is really degrading! That has added to my depression like you don’t know what! I don’t deal with these issues just at my workplace, I deal with it in my home. It really compounded everything. I am just totally distraught over it. The depression is really very heavy over that. It was, is, really hard. When I went back to my GP, he decided, “We’ll send you to another specialist.” It was just over 12 months from the initial injury that I actually had surgery for my arm. I just think it was mismanagement. I think we’re the ones that have the body. We’re the ones who have the pain. I find that sometimes to Work Cover you’re a bit of paper, and whatever this doctor or that doctor says is what they will agree with. They should be listening to the patients themselves because for myself, I knew that I had a problem. I had all this burning sensation. There was this particular nerve in my forearm actually controlling a lot of the nerves in the back of my hand. I was actually getting a burning sensation, cramping, and all sorts of problems because of it. I kept telling the initial doctors where the problem was. I could tell where it was, I knew where it was, and sure enough, when this third doctor operated, the problem presented itself. Yep, right where I’d pin-pointed it. So that really goes to show that we know our bodies. We know where the pain is coming from. I think they should take us into consideration. We’re not a piece of paper. We’re not a medical report. We are actually having the pains. Work Cover needs to be talking to you! They need to be asking, “Where have you got this pain?” Because my workplace didn’t have a rehabilitation officer, and my coordinator (supervisor) did not understand the issue, she was very discriminatory against me. She’s not Indigenous and I’m Indigenous, and she used to give me a hard time. I am not very impressed about the whole system. I really feel that if I injured myself again, I would never go through Work Cover. I don’t want to put myself through that. What they don’t realize is, that it is not just at work that I had a problem, it became a problem at home as well. My injuries have actually affected issues within my own home. I can’t lift things. I’ve lost a lot of strength in my hand, not just my thumb—so I can’t lift a baking dish out of the oven. I can’t even lift my laundry basket. My family had to take up most of the manual duties I usually do. I’m very right-handed, and it was my right hand that was injured, making regular things I do very difficult. My family now does the vacuuming, and they clean the showers because I don’t have that strength. So anything to do with sweeping or vacuuming or lifting or even peeling potatoes are difficult and people don’t realize just how hard those simple things can be. Again, I’m an Indigenous person and some of these places are so mainstream; they just don’t take any of that into consideration. My employer was a community-based, not-for-profit organization. If I took them to court or I initiate anything any further, it’s money the kids in the program will miss out on in the long run. I’m just too community-based to think that—to think just about me. I mean that’s how I think. I’ve spent 20 years on “kindy”

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committees and preschool committees and I just know how hard that money is to come by—how much that money could be used for intervention and prevention stuff. If I take my case further, it’s only going to be taken out of some other project that could really benefit the kids. That’s just me— community is my heart and soul; my family is my heart and soul, and I probably see it that it would take money away from my own community, the Aboriginal community. A lawsuit would take away from my Aboriginal community. I just know how much money is needed. The other part that I am concerned about is that any money that my service is actually billed up would take funds away from their service. I felt that I needed an Indigenous caseworker. I think that’s very valid and every organization now should have somebody Indigenous that you could at least talk to. If my workplace did not have a rehabilitation officer, they should have been fined for that. I mean, I kept bringing it up, telling Work Cover, but they did nothing about it. All they needed to do was send a letter—a letter from Work Cover to the employer saying, please send me back a letter nominating your rehabilitation officer. If you haven’t got one, this is what it is, so then the client knows who they can deal with. I have achieved my ambition to become a teacher. I trained; my course was for five years. I came out on top of everything and I got an award for academic excellence. My graduation was supported by my community and my community of people that I work with. And to me, that was my strength. By working in there and really struggling through it all, I actually became their role model. So for me, that’s my achievement. Now I’ve got four co-workers into study and they’re looking at becoming teachers. So that’s the positive that has come out of my dilemma. The other thing I suppose is hopefully now that I keep telling my former employer about rehabilitation, they will have at least looked into it. I still feel that they need to get a rap over the knuckles for not having a rehabilitation officer. As for my disability, they’ve said, “Okay, you’ve now got a work-related injury of such and such a degree,” and so apparently my degree what they’ve calculated it as is a 19.6 percentage loss—a 100 percent being death. So it’s 19.6 percent of my bodily functions that has now been designated as being work-related injuries. I now have to agree whether or not to take the pay out offer that they’ve claimed. But they need to give you more information about how the medical assessment tribunal works so you can make an informed decision as to whether you take what they’ve offered or go to the next process. They sent me some legal jargon about what it means, but they haven’t sent me any information brochure in my terminology or any grassroots terminology to tell clients exactly what it means and whom to contact should they have any inquiries. What happens to somebody who’s got no literacy? My concern isn’t just for myself. I work with a lot of Indigenous people and nonindigenous people who have no literacy. Can’t read, can’t write, but are expected to understand when people use jargon. So how are those people supposed to be able to understand the processes? They don’t, and I really think they need more grassroots terminology and understanding. I think that the Work Cover caseworkers need to have a full understanding of the socioeconomic areas that

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people come from. In a lot of cases they don’t. I’m lucky enough to have an education—it’s taken me a lot of time—but I got there. I’m just astounded that there’s no grassroots movement and support for people to help others in the community to understand the terminology. It’s just too overbearing. It really is. I wanted to bring that up because it’s something really important that needs to be addressed.

NOTES 1. For an explanation of this condition, see http://www.bbc.co.uk/health/ask_ the_doctor/dequervainstendonitis.shtml. 2. Australian workers compensation program.



W

hy did we need a book entitled Disability: Insights from across Fields and around the World? In all other sectors of life, globalization is a force that is bringing significant advantages (and challenges). Global collaboration can provide an opportunity to appreciate both cultural differences and similarities; it can encourage sensitivity to diversity and strength through cohesion. Through global cooperation, we may be able to address the extent to which people with chronic illness and disability and their issues are taken seriously. In his review of globalization, Kunitz (2000) concluded that globalization in the health arena has the “potential, incompletely realized, to create both an audience for the airing of injustices . . . and a means of redress” (p. 1538). However, to collaborate globally, we must first understand and overcome very real differences without losing our cultural distinctiveness. We must learn about each other and appreciate difference as a fundamental starting point in life (see chapter by Gibson). But we must also recognize and respect the impact of historical legacies such as colonialism (see chapters by Campbell, Barlow, & Barlow; Kelly), cultural or religious nuances (see chapters by Al Attiyah & Mian; Gharaibeh; Gotto; Sovani; Manyibe, Mamboleo, Mugoya, & Kampfe; Tawakkul, Bhatty, & Yousef), different degrees of social development (see chapter by Söderström), and geographical challenges (see chapter by Morrissey). We must also acknowledge that inequality is an inherent scar on the world’s health and social landscape (Jong-wook, 2003) that profoundly alters the experience of disability. For all these reasons, we needed to explore insights about disability from around the world. Is it possible for people with disability to reclaim the globalization movement and redirect its energy toward outcomes, such as access for all and the

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elimination of disparities in health and human services? As Emmerson, McConkey, Noonan Walsh, and Felce (2008) noted, the importance of a global approach to understanding and addressing disability is emerging. Globalization is fundamental to the establishment of the United Nations’ Millennium Development Goals (www.un.org/millenniumgoals) and to the work of the World Health Organization around the International Classification of Functioning, Disability and Health (2001). However, the most exciting global initiative in the area of disability is the United Nations Convention on the Rights of Persons with Disabilities, which was launched in December 2006. As we noted in the introduction, the convention has raised important human rights of citizenship for people with disabilities and has proposed a definition of disability that is remarkable. It is a definition that is not based on cause or a threshold of functioning (Leonardi, Bickenbach, Ustun, Kostanjsek, & Chatterji, 1996). Instead, disability is recognized to be an evolving concept that is always contextualized and relational as we have represented in this series. The chapters contained in this series are testament to the importance of rights-based legislation and the aspirations it can engender in society. In countries without suitable legislation that acknowledges disability, people with disabilities are invisible, their rights are not upheld, and their needs are not met (see chapters by Al Attiyah & Mian; Campbell; Bhatty, Moten, Tawakkul, & Amer; Gotto; Sovani; Spirito-Dalgin, Ergene, Marrone, & Munir). However, the fallibility of legislation is also a common theme across the chapters. Even in countries where legislation has been passed to provide access to buildings, education, or employment, it can remain unenforced or incomplete in its implementation (see chapters by Agorastou, Kalyva, Kaderoglou, & Stefandis; Kuemmel & Kuemmel). Some chapters highlight the unintended consequences of legislation, often created by the fact that legal rights are applied and interpreted inconsistently or are only ascribed to those who fit the “legal” definition of disability or conform to the expectations of that legislation (see chapters by Campbell; Hedlund; Pilgrim & Rogers). Too often in the industrialized world, we think there is nothing to learn from other places. We perceive those places as being in need of improvement through the adoption of the values that dominate industrialized countries. Through this contemporary form of colonization, we continue to export Western ideology without seeing its negative impact on other countries (see chapter by Lusk & Paul), instead assuming that Western ways are aspired to by all other cultures. This pervasive attitude perpetuates a belief among scholars from “developing” nations that solutions emanating from the United States (or other industrialized countries) are more legitimate than their own localized knowledge. In this series, we highlight some of the lessons that can be learned through global collaboration. Kendall and Marshall describe the creation of a global community of influence through which the voices of Indigenous women with disability can be magnified. Throughout this series, we have tried to highlight lessons that transcend countries, explore how globalization affects each of us, and identify where we are each located in this global community. As an extension of this argument, it is equally clear from these volumes that lessons can be learned from minority populations that are marginalized

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within our nations. Barnett and Barnett; DiCowden; Hickey; and Leisman clearly describe the lessons that health professionals can learn from Indigenous models of health, recognition of spirituality, and multifaith approaches to rehabilitation. Begay, Brown, and Bounds demonstrate the way in which we each see the world through our own cultural lens, cautioning us to be open to the lessons from other cultures. We need to constantly ask ourselves, “what can we learn from other contexts, other countries, other cultures, and even from history?” (see chapter by Tawakkul, Bhatty, & Yousuf for a description of the two-way nature of cross-cultural learning). Have we dealt with disability in better ways in the past? Have we learned from failures of the past, such as that described in the “journey of sanctioned injustice” (see chapter by Kelly)? So what are some of the common lessons and trends that emerge through these chapters? In dividing the chapters into three volumes, we note the arbitrary nature of the divisions—disability is an entire experience that cannot be easily divided into experiences, contexts, and responses as we have done here. In reality, these three facets interact to create a whole that is far more complex than we can readily represent in words. Our division of chapters could have been based on any number of other themes that emerged as we read them. A major observation was that several chapters describe the global shift from biomedical constructions of disability to those based in the social world. This complex shift is discussed in many other texts on disability, and only some of the complexities are described in this series. Importantly, several chapters comment on the fact that somewhere between these two extremes is a point where the biological, psychological, social, and cultural experiences come together and contribute to a holistic understanding of disability. Some chapters focus specifically on definitions of disability that are derived from these frameworks (see Crocker; Gibson; Hedlund; Pilgrim & Rogers). These chapters describe how different definitions and conceptualizations of disability translate into practices and policies that impact on people. Other chapters use social analysis or critical disability discourse analysis to explore the impact of social constructions and language on the way people with disability are experienced and experience themselves. These chapters (see Campbell; Hodgkins & Baility; Pilgrim & Rogers) are important because they challenge the way in which we think about disability and encourage us to extend our minds, rather than unquestioningly conforming to the prevailing pressures. The shift to a rights-based approach to disability (see chapters by Crocker; Kuemmel & Kuemmel; Morrissey) is another important theme. Although the social model has been a useful tool for shifting responsibility for disability from individuals to societies, some chapters comment on how this model has also denied the very real existence of physical impairment and the impact of that impairment on individuals (see Campbell; Susa; Gover). An important corollary of the rights-based approach is the fact that it moves us one step closer to an approach where difference is expected, accommodated, and celebrated. Approaches based on equality tend to assume that we need to create balance across people by ignoring or rectifying difference (i.e., through welfare systems). By definition, some individuals are seen as unequal, inadequate,

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and unacceptably different. In contrast, responses based on the principle of universality promote a model where difference is expected, celebrated, and accommodated. It is obvious from the chapters in this series that the experience, definition, acceptance, and/or rejection of a “disability identity” varies enormously across individuals and depends a great deal on the extent to which it is personally relevant or meaningful, often because it prevents participation in a desired activity (see Susa) or if it is religiously significant (see chapters by Al Attiyah & Mian; Bhatty, Moten, Tawakkul, & Amer; Gharaibeh; Tawakkul, Bhatty, & Yousef). There are also chapters that highlight how culture, or individual choice (see Stager; Yazzie-King) can create or remove disability simply through the way it is viewed. In some cases, this social interpretation of disability alters the experience of the same impairment within a given culture (see chapter by Gotto); in other cases, it simply denies the presence of real difficulties (see chapters by Ackerman & Banks; Catalano & Kendall; Salley), and in yet other cases, it creates stigma and a sense of illegitimacy (see chapters by Campbell; Cederna, Palguta, Wall, & Koch). The experience of being excluded from society is particularly relevant for people whose disability does not fit the normative views, stereotypes and definitions—for instance, people whose disability differs from what would be expected. For example, Catalano and Kendall describe the isolating experiences of young people who have had a stroke—usually considered to be an elderly person’s disability. Kampfe describes the high incidence of preventable hearing disability in elderly people that is often overlooked because it is attributed to simple age-related decline. Conceptions of disability in society are heavily influenced by discourses in the popular media, the general use of language, and social norms (see chapters by Hodgkins & Baility; Morrissey; Campbell; Sovani). It was not possible to find a consistent language for this series because the words used to describe people with disability represented an entire body of hidden meaning. Chapter authors used various forms of language to refer to people with disability. “People first” language was preferred by many because it addresses people before it acknowledges disability. Other authors preferred to use the language of “Disabled People” to acknowledge the implicit nature of disability and the fact that it is inextricably interwoven into a person’s character, in the same way as their gender, ethnicity and personality. Finally, some authors used the abbreviation PWD that is common among advocates. This language positions individuals within a collective identity that is not about deficit, but about having the power to self-advocate for change. In some sectors of the United States, it is customary to capitalize terms that refer to people with disability (i.e., People with Disability). In contrast, to capitalize words in Norwegian (i.e., Deaf) brings with it connotations of stigma (as if they were a special group). The Norwegian deaf community never spells with a capital D first, just an ordinary d to show they are ordinary people (see chapter by Hedlund). Several chapters demonstrated how people with disability are influenced by languages, discourses, and constructions. Stigma and its impact are common themes across many chapters, often created by local cultural ways of

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explaining disability as a consequence of one’s own actions, a repercussion for one’s sins or just bad luck (see Al Attiyah & Mian; Manyibe, Mamboleo, Mugoya, & Kampfe; Sovani). However, stigma is also present in countries with advanced legal and social service frameworks around disability, as demonstrated by Campbell. In negotiating such frameworks, people with disability are required to legally “prove” their disability to receive rights. Further, they must often demonstrate that they have made attempts to mitigate their “loss.” They are only deemed worthy of society’s assistance if they follow these rules (see also Gibson). McDonald’s chapter describes how young people with invisible disability respond to these unreasonable demands by obscuring their disability and “passing” themselves off as nondisabled. Other chapters described the denial of parents when they first confront disability in their child (see Bursnall, Kennedy, Senior, & Violet; Douglas & Borbasi). The Sovani chapter about people with schizophrenia in India demonstrates a language-based attempt to alter stigma. Other chapters describe ways in which service systems are responding to stigma by developing models based on wellness (see Breen & Saggers); the integration of mind, spirit, and body on a continuum of ability (see DiCowden); and person-centered planning (see Blessing, Golden, & Bruyère). Unfortunately, however, the responses of health professionals are not always helpful—throughout these chapters, there are examples of hostile systems (see Burnett; Bursnall, Kennedy, Senior, & Violet; Douglas & Borbassi; Madrid, Grant, & Rosen), inactive or unresponsive systems (see Leisman; Gibson), ill-informed systems (see Agorastou, Kalyva, Kaderoglou, & Stefanidis; Kuemmel & Kuemmel; Spirito-Dalgin, Ergene, Marrone, & Munir; Tawakkul, Bhatty, & Yousef), and actively harmful systems (see Kendall & Muenchberger). Confronting an unhelpful system is an exhausting reality in the lives of people with disabilities. Gibson, for instance, describes her relief on the one occasion when she did not need to fight the system for her rights. We have included chapters that demonstrate the helplessness and passivity that individuals sometimes experience when they confront unhelpful systems and the internalized sense of inadequacy that can result. Other chapters describe responses that seek to change systems through self-advocacy (see Koch, Beggs, & Bailey; Susa; Zuver, Dorton, Finks, & Fisher), legal mobilization, and capacity-building (see Campbell). There are stories written by people with disabilities who have become health professionals and proceeded to influence models of practice (see Barlow; Gibson; Pieper). There are also stories of health professionals who have experienced disability leading to a change in their practice (see Kendall; Susa; Morrisey). The stories about preventable disability are particularly disturbing—violence (see chapter by Ackerman & Banks), war (see Gharaibeh; Manyibe, Mamboleo, Mugoya, & Kampfe), preventable disease (see Morrissey; Sovani; Gharaibeh), accidents caused by unregulated worksites or driving conditions (see Morrissey), deliberate self-harm (see Campbell), and the neglect of an entire cultural group (see Barlow; Gotto). These chapters highlight the excessive level of unnecessary and preventable disease and injury that results in disability. With appropriate health interventions or sufficient protection of innocent citizens, this level of disability could be avoided. Natural disasters feature

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prominently (see chapters by Campbell; Spirito-Dalgin, Ergene, Marrone, & Munir). Our lack of preparation for such disasters and prevention of subsequent disability is senseless, particularly in areas where disasters are known to occur. However, as Madrid, Grant, and Rosen show in their chapter on the aftermath of Hurricane Katrina in the United States, poorly planned responses to natural disasters that create disability and neglect people with disability during disaster occur in the most unexpected places. Article 11 of the UN Convention on the Rights of People with Disability extends the right to life and survival to situations of emergencies. Under the convention, countries are required to ensure the protection and safety of persons with disability in situations of risk, including armed conflict, humanitarian emergencies, and natural disasters. Article 16 extends the right to freedom from torture or cruel, inhuman, or degrading treatment and from all forms of exploitation, violence, and abuse. Clearly we have a long way to go in some parts of the world, including the United States, if we are to see these rights upheld in future. Several chapters have identified the important role of health promotion, rehabilitation, and prevention for the future—in the workplace (see chapters by Blessing, Golden, & Bruyère; Buys & Randall), in schools (see Liesman), on the roads (see Morrissey), and within service systems (see DiCowden; Breen & Saggers; Parkinson). There is a fine line between respecting individuals who already have disability and promoting cure, prevention, and amelioration, which automatically places a particular type of discourse on disability (i.e., as a “harmful” state that should be removed if possible). This dilemma is faced by many people with disability when they are presented with opportunities to “remove” or reduce their disability (see chapters by Campbell; Gibson). It seems that we must seek a society that accepts diversity as a natural part of human existence and responds to that diversity in a way that acknowledges its presence and its right to be expressed at the same time as valuing human health and life, creating environments in which people can flourish and achieve their dreams (see chapter by Susa). How do we walk this fine line? Is the rights-based approach with its universal doctrine able to provide a way forward? Or does a rightsbased approach focus attention on the individual—ensuring rights but also implicitly assigning individual responsibility? Might a “collective welfare” approach (see chapter by Hedlund, Landstad, & Svensson) provide an equally promising way forward? The most common area where universal access rights have been sought is in relation to physical access. Several chapters show that even this simple universal right cannot be easily implemented or enforced (see Gharaibeh). The chapter by the Kuemmel and Kuemmel is a good illustration. These two sisters, one with a disability and one without, describe their travel experiences in parts of Europe and show how access is meaningless unless it is universally applied. They describe how autonomy was jeopardized by their inaccessible environment and noted the impact this had on both sisters. The demands placed on family members when environments are not supportive of autonomy are highlighted in several chapters. For instance, Catalano and Domalewski describe how the daughter of an elderly person loses her important role of daughter and instead becomes a case manager. Pakenham

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describes the impact on youth who care for a parent with a disability. From the perspective of the youth, this parental reliance reduces their independence and can place unrealistic expectations on them. Ackerman and Banks note that family members who become caregivers do so without adequate training and support. The role of technology in improving participation in society is highlighted by Söderström in her chapter about the “digital town square.” She describes how the internet has provided a new way of interacting for young people with disability. However, she notes that, like any other context or environment, this digital town square can exclude particular people. The Wheaton and Bertini chapter goes on to describe efforts to make technology accessible around the world. In explaining the lack of access in some countries, Kuemmel and Kuemmel observe that the collective ideals in some countries may mean that people with disability are expected to rely on family, and that family is expected to care for a member with a disability. This interesting interaction between independence and interdependence is one that emerges through several chapters, the most clearly of which is Gotto’s chapter about two young Mixe men with disability. In this chapter, Gotto describes how disability is a relational and social phenomenon. The impact of the context on disability and the important impact of disability on its context is outlined by the chapters on bullying in schools (see Liesman), foster care (see Cederna, Palguta, Wall, & Koch), and families (see Douglas & Borbasi). In contrast, Susa describes the dreams that can be achieved by people with disability when the context is right. This is also demonstrated by Gibson, Gover, and others. Several chapters highlight ways in which we are beginning to respect the personal needs and rights of individuals who have disability. Blessing, Golden, and Bruyère describe the development of person-centered planning and Bell, Henthorne, Hill, Turnball, and Zito describe the process of supporting autonomy. Several chapters outline movements in their countries to make schooling more accessible and appropriate for students with disability (see Agorastou, Kalyva, Kaderoglou, & Stefandis; Spirito-Dalgin, Ergene, Marrone, & Munir) or to build capacity among its citizens with disability (see Campbell; Sovani). What is the role of these movements in countries or populations where the intersection between poverty, race, and disability delivers a triple disadvantage? Whether in developing countries or in a minority group within the richest countries in the world, people with disability who live in poverty are confronted by an intricate web of effects—they are more likely to be exposed to risks (see chapter by McDonald, Keys, & Balcazar), they are less likely to receive treatment (see Burke & Lopez), and they are less likely to have access to healthy alternatives (see DiCowden). The chapters in this series highlight the vast differences between regions of affluence and those affected by poverty. This issue is articulated more fully by Paul Leung in his preface to the series. In conclusion, understanding disability issues that impact on people from a global perspective can contribute to the redress of health disparities and reduce marginalization caused by inappropriate services or insensitive practices. However, as described by Kunitz (2000), “there is no assurance that

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all countries will benefit equally from the global economy that has emerged since World War II” (p. 1531). Indeed, Kunitz wrote that globalization could be profoundly deleterious to the capacity of some countries to provide for all their citizens, especially people with disability. The chapters in this series have clearly identified the different capacities of countries to meet the needs of their disabled citizens, as well as cultures within countries, and, of course, individuals within cultures and local communities. Thus, although we look to globalization with optimism, we understand and respect the choice of diverse countries, communities, and individuals to make their own decisions. The chapters have highlighted the fact that not all voices are heard with the same intensity. In our introduction to this series, we lamented the fact that we were unable to represent many populations adequately. Nevertheless, our thinking in preparing these volumes was informed by voices from other places, voices that are not reproduced in these volumes, but does this type of “silent” or “secondary” representation equate to actual participation? It is clear that considerable effort is required to represent voices that are not usually heard. The assumption that globalization can equalize voices is a fallacy. Indeed, several chapters in this series comment on the unequal representation of particular populations and the methods that are being designed to give voice to silenced populations (see chapters by Campbell; Morrissey; and the many other personal narratives throughout the volumes). The narratives are particularly important to the series because they represent voices of women and men who may not otherwise publish their stories, so we may not otherwise have the opportunity to learn from their experiences. In each volume, we have combined scholarly texts with those written from personal experience, narratives that reflect reality from the perspective of those who are living with disability rather than from those who study disability. We have combined the power of personal narratives with the rigor of academic research to highlight the value of the community voice and place it on the same level as empirical and scholarly theory and professional practice. All perspectives are important. It is only through cross-fertilization that perspectives are enhanced and solutions become apparent. Indeed, the chapters in this series have identified both strengths and weaknesses in all countries—lessons to be learned in all directions. Throughout, there are strong common global messages that all people with disability seek to be valued, understood, and respected in all areas of their lives. They seek to be accepted as they are, rather than placed into stereotyped categories, judged, and asked to prove themselves. They seek to be connected to other people and to have dreams for the future. Around the world, systems are seeking to be more responsive to the needs of people with disability. Important trends are apparent in this series, including the need for systems to respond from a perspective of health rather than disease or deficit, for professionals to promote autonomy and capacity rather than to deplete natural resources and support systems, for communities to honor the relational and contextual nature of life rather than creating silos and pockets of isolation for people with disability. Given these global trends and demands, it is plausible then that global collaboration might lead to a stronger and unified voice for people with disability. We hope that this series goes some way toward

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reclaiming the globalization movement for people with disability. Perhaps if we approach the diverse global community with tolerance and respect as core values, then we may see a day when disability is a part of life, just like our gender, our height, our religion, and the color of our skin. That was one of our hopes—only time will tell, but it is an honor to have been a part of the discussion. We hope that this series becomes part of the process of finding a way forward that both respects diversity, yet contributes to the elimination of disparities.



Index

Abdullah, Ali, 40 Ableness, compulsory, 281 Aboriginal people, 299–303. See also Assan, Kozlan Academic inclusion, 30–33. See also Inclusion Access to services, 89–90; universal, 4 Accessibility, 310–11; travel narratives, 218–20; worldwide, 218–23 Accountability, 4 Acting for Advocacy (A4A), 201, 213–14; background, 202–3; defining component of A4A process, 204; enactment as a training tool, 203–5; impact of an inclusive team, 205; individual team member accounts, 205–13; Speak Up! Action Manual for Peer Leader Teams, 205; team of trainers with and without disabilities, 201–2 Administration on Developmental Disabilities (ADD), 202, 203 Advancing the Inclusion of Persons with Disabilities, 239 Advocacy, 120–21, 175, 245–46, 261–62; barriers to, 250; child, 247–48; conflict and, 250–51; defining, 246–51; giving voice,

249; literature on, 246–47; a model for, 258–61; role of, 247–48; terminology, 246, 259–61. See also Acting for Advocacy Advocacy movement, history of, 251–52; key events, 252–54; the parent wave, 255–57; the professional wave, 252, 254–55; the self-advocate wave, 257–58 Advocatees, 259–60 Advocators, 260–61; relationship with organization providing the desired service, 260–61 African Americans, xvi Akabas, S. H., 130 Al Amal Institute for Males (Qatar), 28 Al Shaffalah Center for Children with Special Needs (Qatar), 28, 36–38 Al-Noor Institute for are Blind (Qatar), 36 American Association on Intellectual and Developmental Disabilities (AAIDD), 255 American Bar Association (ABA), 248 Americans with Disabilities Act of 1990 (ADA), 258, 279; ADA Accessibility Guidelines (ADAAG), 96; and building access, 95; civil rights

316 Americans with Disabilities Act of 1990 (ADA) (cont’d) movement and, xvi; conception of disabled people, 276; definitions of disability, xix, 215–16, 279, 280; and international accessibility, 215–16, 221–23; overview, 216–18; and Web access, 96, 97, 99 Annan, Kofi, xxi Arc of the United States, 256 Assan, Kozlan, 267–70 Athens. See Greece Australia. See Assan, Kozlan; Workers’ compensation system in Australia Australian childhood health and disability services. See Wellness approaches in policy and practice Autism Society of America (ASA), 256 Barriers, 245–46, 250 Biomedical approach, 233–34. See also Medical/deficit-based paradigm Biomedicalism, 275–76 Biscayne Academy, 194 Biscayne Foundation, 190 Biscayne Institutes, 191, 192. See also Health Care Community (HCC) model Brain cancer patients, 66–67. See also Cancer patients Brain injury services, traumatic: adult, 192; pediatric, 194 Brandt, E. N., 225 Britain. See United Kingdom British Columbia (B.C.) Cancer Agency, 63, 69, 72, 75–78, 80; development of a model VR program within psycho-oncology team, 69–72 Brock-Utne, B., 293 Bruce, Alan, 96 Buddhism, 113 Bureaucratic relationships, 153 Bush, George H. W., 215 Canada: Canadians with disabilities, 229; Office for Disability Issues (ODI), 238; service delivery, 231–33. See also Cancer patients Canada Act, 235–36 Canadian Charter of Rights and Freedoms, 241 Canadian disability policy, 227, 241; federal policy initiatives, 237–40;

INDEX international influences on, 234–35; judicial influences on, 240–41; jurisdictional issues, 229–30; key policy considerations, 227–28; legislation, 235–37; policy discourse, 233–34; policy making models, 228–29; Registered Disability Saving Plan (RDSP), 239 Canadian disability rights movement, 230–31; waves of development, 231 Canadian Human Rights Act, 236 Canadian Human Rights Commission, 236 Canadians with Disabilities Act, 238 Cancer, impact on employment, 63–68, 80 Cancer patients (returning to work), 63–64, 80; cognitive deficits, 66–67; disclosing one’s cancer experience at work, 68–69; emotional distress, 64–65; fatigue, 65–66; and human and employee rights, 67–68; investigating possibilities at workplace, 74; knowing government employment programs, 75–76; knowing one’s insurance plan, 74–75; knowing one’s rights and responsibilities, 74; long-term disability forms, 78–80; permanent physical disability, 66; resources to support self-determination, 76–77; “Returning to Work: Things to Consider,” 72–76; role for vocational rehabilitation, 64–68; support programs, 76–77; taking control over one’s rehabilitation plan, 73; talking to one’s doctor, 73. See also British Columbia (B.C.) Cancer Agency; Vocational rehabilitation Capacity building, 116–20; challenges to, 121–25; defined, 117; in Sri Lanka, 116–25 Carter Center Mental Health Program, ix–x Case advocacy, 249, 259–60 Case management, return to work, 137–40. See also Cancer patients Casteñeda, Jorge, 23 Charity discourse (disability policy), 233 “Charity” provision of services, 58 Child advocacy, 247–48

INDEX Childhood health and disability services, Australian. See Wellness approaches in policy and practice Christianity, 113 Citizens’ Health Care Working Group (CHCWG), 183–85, 195–97 Civil rights movement, xvi, 255 Civil society, 116–17 Class advocacy, 249, 259–60 Cognitive deficits in cancer patients, 66–67 Collaboration. See Global networking Colonization, 19, 113 Community, x, 20, 173. See also Health Care Community (HCC) model Community membership era (Canada), 232–33 Community mental health centers (CMHCs), 196 Community outreach, 190 Community-based rehabilitation (CBR), 118–19; defined, 119 Community-based setting, provision of support from a, 173 Compensation, 158 Compensation programs, 158–59 Complementary and alternative medicine (CAM), 183, 192. See also Integrative health care Compulsory ableness, 281 Conflict perspective, 233 Consumer choice, 4 Council on Community Advocacy (COCA), 248 Cross-cultural communication, 21. See also Indigenous people de Alwis, M., 117 Decolonization, 19 Deferability, 282 Deficit approach to inclusion, 58. See also Medical/deficit-based paradigm Deinstitutionalization movement, 2–3, 232 Demand-driven services, movement toward, 4–5 Developing countries, xvi, 311 Development, right to, 10 Developmental disabilities, 2 Deviance perspective, 233 “Disability identity,” 308 “Disability lens,” 238

317 Disability management, 129, 130, 138, 140; concepts related to, 130–32; defined, 130; systems approach to, 132–34 Disability management program, components of an integrated, 134; early intervention, 136–37; integrated claims management, 135–36; prevention, 134–35; return-to-work case management, 137–40 Disability(ies): context and, 311; definitions and meanings, xix, 156–57, 167–68, 216–17, 275, 279, 280; overview, xiii; promoting cure, prevention, and amelioration of, 310; as provisional or tentative, 280–82 Disabled Peoples’ International (DPI), 246 Disabled people’s organizations (DPOs), 117, 118, 288, 292–95 Disabled person(s): opportunities to “remove” or reduce their disability, 310; terminology, 308 Disasters, natural, 84–85 Discrimination: and antidiscrimination policy, 155–57, 163; race, ethnicity, and, xv, xvi. See also Working life Dorton, Robyn, 211–13 Dual diagnosis rehabilitation, adult, 193–94 Ecological approach. See Disability management, systems approach to Education. See Academic inclusion; Greece; Inclusive education; Qatar eEurope Action Plan 2002, 100 eEurope Action Plan 2005, 100 eEurope–An Information Society for All, 99–100 Elders program, 193 Elective disability, 278 Electronic and Information Technology Accessibility Standards, 98–99 Elwan, A., xiv, xvi Employee assistance programs, 135 Employee rights, 67–68 Employment: policy implications for, 9. See also Disability management; Labor laws Employment Equity Act (Canada), 237 Employment programs, government, 75–76

318 Empowerment, 3–4, 8, 203, 249; through collaboration, 131–32; of workers, 130–32 Enactment as a training tool, 203–5 Environmental approach to case management, 138–39 Equality, conceptions of, 157 Equity, 96–97 Essential Lifestyles Planning, 5 European Union (EU), 157–58; framework for equal treatment directive (FETD), 155–58, 160, 163–64; Web accessibility in, 99–101 Exclusion: paradigms for, 96. See also Inclusion Fatigue in cancer patients, 65–66 Federally qualified health centers (FQHCs), 196 Finkelstein, V., 236 Finks, Wilson, 208–11 Fisher, Kira, 205–8 Florida Council on Spirituality, Medicine, and Healing, 187–88 France, Web accessibility in, 104–5 Fulcher, G., 233 Functional approach, 233–34 Galvin, D. E., 130 Gates, L. B., 130 Georgia, 4 Germany, Web accessibility in, 104 Global collaboration, 305–7 Global communication, 225 Global evolution of disability rights protections, 9–10 Global forum for Indigenous people with disabilities, 19–20, 22–24 Global networking, challenges to, 20–24 Global perspective on health and disability, 311–13 Globalization, 115 Globalization movement in health arena, 305–7, 311–13 Greece: accessibility in, 218, 219, 221, 222; education system, 45–46; parental attitudes toward inclusion, 55–57; peer attitudes toward inclusion, 57–58; special education in, 46–49, 58–59; teacher attitudes toward inclusion, 50–55

INDEX Harris, P., 281 Health: definitions, 168, 189; holistic definitions, 170, 172; politicization of, 175 Health and wellness programs, 135. See also Wellness approaches in policy and practice Health Care Community (HCC) model, 185–86; accreditation, 195; ancillary programs, 188–90; goals, 187; growing HCC, 195–97; integrated continuum of services, 187; integrative primary care, 190–91; interdisciplinary staffing, 186; philosophy, 186; physical environment, 186–87; rehabilitation, 192–95; wellness, prevention, and health promotion, 187–90 Health care reform, 182 Health care system: the challenge of our current, 182–83; transition plan to improve, 184–85 Health Care That Works for All Americans, 184 Heji, Hayat Khalil Hassan Nazar Heji, 39–40 Holistic health, 172. See also Complementary and alternative medicine; Integrative health care Hotel accessibility, worldwide, 218–20 Human rights legislation, 236 Hyndman, J., 117 Iatrogenic injuries, 152–53 In Unison: A Canadian Approach to Disability Issues, 238 Inclusion, 96–97; academic, 30–33; of workers, 130–32. See also Mainstreaming Inclusion Project (Qatar), 30–33 “Inclusion units,” 47–49 Inclusive education, 43; deficit approach to, 58; international policy framework, 44–45 Independent living, 3–4 Indigenous people (with disabilities), x, 267–71; central goal of work involving, 19; challenges to global networking, 20–22; global forum for, 19–20; the problem of small numbers, 18–19. See also Kenya Indigenous women, 299–303

INDEX Information and communication technology (ICT), 311. See also Web accessibility “Injury,” 276, 278–79 Institutional reform era (Canada), 232 Integrated systems, movement toward, 4–5 Integrative health care, 188–91. See also Complementary and alternative medicine Interdependency, 201 Interdisciplinary teams. See Multidisciplinary teams International Classification of Functioning, Disability and Health (ICF), xiii, 13 International government organizations (INGOs), 119 International League of Societies for the Mentally Handicapped (ILSMH), 257–58 Internet. See Web accessibility Italy: accessibility in, 218–22; Web accessibility in, 102–3 Japan, Web accessibility in, 105–6 Japan Industrial Standard (JIS), 106 Job redesign, 135 Jorgensen, C., 58 Kaderoglou, E., 52–57 Kallen, E., 235, 236 Kanam, 39 Kennedy, John F., 2 Kennedy, Rosemary, 256 Kenya, 295–96; Constituencies Development Act of 2003, 289; cultural and religious beliefs, 286–87; disability in, 287–88; disability legislation, 289–91; Disability Manifesto, 292; DPOs and capacity development, 294–95 (see also Disabled people’s organizations); ethnicity and language, 286; geographical and economic situation, 285–86; governance, 287; international development agencies, 293; interventions and challenges, 288–93; labor laws, 292–93; National Council for Persons with Disabilities (NCPWD), 291, 292; Persons with Disabilities Act (PDA), 289–91;

319 policy initiatives, 291–93; poverty alleviation strategies, 288–89; special education, 293–94 Kenya Institute of Education (KIE), 294 Key, Lisa, 278 Kunitz, S. J., 257, 305 Labor laws, 292–93. See also Employment Labor-management collaboration, 131 Law and disability: casing disability, 279–80; desire to drive down disability, 274; legal baggage and backdrops, 273–75; possibilities and dangers when they meet, 275–79. See also Legislation Lawyers and lawyering, 276–77 Lay discourse (disability policy), 233 Leadership training, 121. See also Acting for Advocacy Learning Center (Qatar), 35–36 Learning Center School (Qatar), 36 Leary, Kimberlyn, 281 Legal mobilization, 120–21 Legislation, 226; Canadian, 235–37; impact for professionals working with disabled persons, 223–24. See also Accessibility; Law and disability; specific legislation Leprosy, 125n.1 Londono, J. L., 153 Lovett, H., 45 Mainstreaming, 295. See also Academic inclusion; Normalization Making Action Plans (MAPS), 5 “Managing disability,” 233 McKenzie, B., 228 McLaughlin, Beverley, 241 Mediation, 251 Medical discourse (disability policy), 233 Medical homes, 196 Medical/deficit-based paradigm, 13. See also Biomedical approach Mental health care. See under Turkey Mental Physical Disability Law, Commission on, 248 Metts, R. L., 9–10 Mexico, 23 Micro-financing, xv Mitigation, 277–78

320 Mother Child Education Foundation (ACEV), 90 Multidisciplinary teams, use of, 172–73. See also Integrative health care “My Thinking About Inclusion” (MTAI), 50, 51, 55 National Disability Rights Network (NDRN), 248 National Federation of the Blind (NFB), 99 Neurology service, 192 New Freedom Commission on Mental Health, 7 New York State Department of Correctional Services (NYS DOCS), 8 No Child Left Behind Act of 2001 (NCLB), 251 Nongovernmental organizations (NGOs), 88–89, 125; in Qatar, 34–38 Normalization, 3, 232–33; principle of, 3. See also Inclusion; Mainstreaming Norwegian Working Environment Act, 161 O’Brien, John, 6, 7 Obstacles, 237 O’Connor, Sandra Day, 279–80 Olmstead decision, 260 O’Reilly, A., 10 Organizational advocacy, 249 Organizational ecology. See Disability management, systems approach to Orjuela, C., 116 Paradigms for exclusion, 96 Parent advocacy, 255–57, 261 Parents of Children with Disabilities Organization, 39 Parkinson, M., 68–69 Participatory Action Research and Indigenous Ways of Knowing, 19–20 People First language, 211–12 Perera, N., 113 Personal Futures Planning, 5 Person-centered planning, 5–6, 13; future implications, 11–13; historical roots, 2–5; implications for employment and disability policy and practice, 9–11 Person-centered practices, promising, 6–9

INDEX Pinto-Jayawardena, K., 116 Pipher, Mary, 181 Planned Lifetime Advocacy Network, 239–40 Planning Alternative Tomorrows with Hope (PATH), 5 Policy implications, 9–11. See also Public policy development and implementation Pope, A. M., 225 Portugal, Web accessibility in, 103 Poverty (and disability), xiii–xiv, xiii–xvi Power, use of arbitrary, 273–74 Preventable disability, 309–10 Prevention activities, 134–35 Prince, M., 239–40 Professional advocacy, 252, 254–55, 260–61 Project STIR (Steps toward Independence and Responsibility), 202–3, 212 Psychiatric disabilities. See under Turkey Psychological injury in workplace, 145–47. See also Workers’ compensation system in Australia Psychoneuroimmunology, 188 Public policy development and implementation: coordinated, 11–12. See also Policy implications Public policy effectiveness, comparative: effective measures of, 12–13 Qatar, 27–28, 40; achievements of people with disabilities, 39–40; governmental schools and services, 28–30; Inclusion Project, 30–33; Law for People with Special Needs, 30–31; Learning Center School (TLCS), 36; Learning Center (TLC), 35–36; NGOs, 34–38; role of parents of children with disabilities, 39; special education history, 28–34; Supreme Council on Family Affairs (SCFA), 29–31, 33, 34; teacher training, 33–34 Qatar University, 33; and special needs, 33 Qatari Association for Rehabilitation of Individuals with Special Needs, 34–35 Qatari Disabilities Sports Organization, 35

INDEX Qatari Social and Cultural Center for Blind, 38 Qatari Sports Federation for Special Needs, 35 Race and ethnicity, xv–xvi Ray, O., 188 Recovery, concept of, 92 Registered Disability Saving Plan (RDSP), 239 Rehabilitation, 12–13, 34–35, 73; adult outpatient medical, 192–93; community-based, 118–19; dual diagnosis, 193–94; Health Care Community (HCC) model and, 192–95; pediatric outpatient medical, 194–95; vs. recovery, 92. See also Vocational rehabilitation Rehabilitation Act of 1973, 3, 4, 256; amendments, 4, 98; Section 504, 97; Section 508, 98–99 Rehabilitation professionals, impact of legislation for, 223–24 Reintegrating Back to Life support group, 76–77 Religion, 113 Return to work, 149; reemployment policy in Sweden and Norway, 160– 63. See also Cancer patients; Workers’ compensation system in Australia Return-to-work case management, 137–40 Rights discourse (disability policy), 233 Rights-based approach to disability, 307–8. See also Canadian disability rights movement Rivera, Geraldo, 2 Role-play. See Enactment as a training tool Rome. See Italy Rovner, Laura, 279 Rumeilah Hospital (Qatar), 29 Safety training, 135 Salamanca Statement for Special/ Inclusive Education, 44 Scandinavia. See Working life (in Sweden and Norway) Schools. See Academic inclusion; Greece; Inclusive education; Qatar Sector responsibility, principle of, 159 Self-advocacy, 203, 211, 257–58, 261. See also Acting for Advocacy

321 Self-determination, 19, 201–3 Service integration, 4 Service structures for people with disabilities, 10–11 Shaffalah Center for Children with Special Needs (Qatar), 28, 36–38 Shriver, Eunice, 256 Smith-Hughes Vocational Education Act of 1917, 255 Social capacity, 118. See also Capacity building Social construction of disability, shift from biomedical construction to, 307 Social exclusion, 308 Social model of disability, 168, 216–17; EU’s, 155 Social pathology, framing disability as, 234 Social role valorization, 3, 232–33 Social Security Administration (SSA), 251 Soifer, A., 280 Spain: accessibility in, 218–19; Web accessibility in, 103–4 Special Education Teacher-Training Program (Qatar), 33–34 Sri Lanka, 111–16, 125; Act for the Protection of the Rights of Persons with Disabilities, 115, 123; AKASA (Association of Women with Disabilities), 118; capacity building, CBR, and legal mobilization, 116–25; Disability Organisations Joint Front (DOJF), 119, 120; enforcement of rights, 123; excessive bureaucratization and tokenism, 124; Human Rights Commission (HRC), 115; knowledge of rights/ information, 122–23; pattern of impairment, 114; poor research cultures around critical disability studies and specialist thinking, 124–25 Standard Rules on the Equalization of Opportunities for Persons with Disabilities, 234–35 State-operated facilities, atrocities in, 2–3 Steelcase Corporation, 130–31, 134 Stigma, 89, 308–9 Strengths-based approach, 172. See also Wellness approaches in policy and practice

322 Stuart, O., 236 Supplemental Security Disability Insurance (SSDI), 8, 9 Supplemental Security Income (SSI), 8, 9 Supreme Court, U.S., 4, 279–80 Swedish Work Environment Act, 160 System, confronting an unhelpful, 309 Target Web site, 99 Teachers: attitudes toward inclusion, 50–55; training, 33–34 Telecommunications Act of 1996, 97–98 Ticket to Work and Self-Sufficiency Program, 5, 8 Ticket to Work and Work Incentives Advisory Panel, 9 Ticket to Work and Work Incentives Improvement Act, 5, 8–9 Title V, 3 Transfer grants, 237 Travel accessibility, worldwide, 218–20 Turkey: current demographic and administrative structure, 83–84; family stability and social support structure, 92–93; historical perspective on mental health approaches in, 85–86; issues for individuals with psychiatric disabilities and their families, 89–91; mental health care paradigm, 92; primary health care centers, 91–92; utilization of private health services in, 88–89; the way forward in, 92–93 Turkish Medical Association (TTB), 88 Turkish mental health, natural disasters and, 84–85 Turkish mental health care system, current, 86; implementationoperations at local level, 86–88; planning and program development, 86; policy and legal structure, 86. See also Turkey Turkish Psychiatric Association (TPA), 90 Unions, 131 United Kingdom (UK), 101; Web accessibility in, 101–2 United Nations (UN), 234; Convention on the Rights of Persons with Disabilities, xiii, xxi, 10, 306,

INDEX 310; Declaration on the Right to Development, 10; Declaration on the Rights of Disabled Persons, 234, 235; Declaration on the Rights of Mentally Retarded Persons, 258; millennium development goals (MDGs), 289; Standard Rules of Equalization of Opportunities for Persons with Disabilities, 295 University Center for Excellence in Developmental Disabilities Research, Education, and Service (UCEDD), 203 University of North Carolina-Chapel Hill Center for the Study of Development and Learning (CDL), 202, 203 University of Qatar. See Qatar University Usdane, M., 22 Vocational Rehabilitation Act of 1920, 255; amendments, 2 Vocational rehabilitation (VR), 63; benefits of publicly funded outpatient hospital setting, 72; role for cancer patients returning to work, 64–68. See also British Columbia (B.C.) Cancer Agency; Cancer Vocational rehabilitation (VR) plan: taking control over one’s, 73 Voluntary disability, 278 Web accessibility, 95; in European Union, 99–105; in Japan, 105–6; themes of inclusion and equity, 96–97; in United States, 97–99 Web Accessibility Initiative (WAI), 98 Web Content Accessibility Guidelines (WCAG), 98 Wellness approaches in policy and practice, 167, 176; indicators of, 169– 71; individualized support, therapy, and intervention, 175; paradigm shift toward, 168; a rhetoric of wellness, 170, 172–76; shared control between client and practitioner, 173–75; toward embedding, 168–70 Wellness programs, 135 Western New York Care Coordination Program (WNY CCP), 7–8 Wharf, B., 228 Whitaker, R., 152

INDEX Will to Act: Equal Citizenship for Canadians with Disabilities, 237–38 Wolfensberger, Wolf, 3 Women, 19; Indigenous, 299–303 (see also Indigenous people) Workers’ compensation, 145 Workers’ compensation system in Australia, 145–47; iatrogenic injuries, 152–53; plagued by irony, 147–52 Workforce. See Disability management; Employment Workforce Investment Act, 4

323 Working life (in Sweden and Norway), equal treatment in, 163–64; EU measures for creating, 156–58; reemployment policy, 160–63; sector principle, 159; social welfare through redistribution, 158–59; solidarity principle, 159 Workplace culture, 135 Workplace modification, 135 World Wide Web. See Web accessibility Zuver, Deborah, 213–14




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leadership. Her most recent book is Women and Leadership: Transforming Visions and Diverse Voices (Blackwell, 2007) and an upcoming three volume set on Diversity in Mind and in Action (Praeger Press, in press). Sue Kroeger, Ed.D., is currently Director of Disability Resources at the University of Arizona. Prior to coming to Arizona in 1999, she was Director of Disability Services at the University of Minnesota for 14 years. She manages a staff of 40 full- and part-time employees that, guided by a social construction of disability, provide services to faculty, staff, and students with disabilities, assist the university in meeting its legal obligations, and provide consultation and education on designing inclusive learning and working environments. Sue received her master’s degree in rehabilitation counseling at the University of Arizona and her doctorate in human rehabilitative services at the University of Northern Colorado. Prior to coming to higher education, she worked in public and private rehabilitation. In addition to her administrative duties, Sue has presented at numerous conferences, published articles on disability and higher education, and coedited a book titled Responding to Disability Issues in Student Affairs. She has been Treasurer and President of the National Association of Higher Education and Disability. She holds adjunct faculty status in the Department of Rehabilitation, where she teaches undergraduate courses in disability studies and advises graduate students. Sue has been principal investigator for numerous federal grants and has consulted nationally and internationally. Paul Leung, Ph.D., is currently Professor in the Department of Rehabilitation, Social Work and Addictions at the University of North Texas. He has held previous academic and administrative appointments at Deakin University (Melbourne, Australia), the University of Illinois–Urbana, the University of North Carolina at Chapel Hill, and the University of Arizona. Paul’s interests have included rehabilitation and disability of persons from diverse racial/ ethnic backgrounds and students with disabilities. He is a fellow of the American Psychological Association (APA) and a past president of APA’s Division of Rehabilitation Psychology (22), the National Council on Rehabilitation Education and the National Association of Multicultural Rehabilitation Concerns. He is a recipient of APA’s Division 22 Lifetime Achievement Award. Joseph E. Trimble, Ph.D., formerly a Fellow at Harvard University’s Radcliffe Institute for Advanced Study, is Professor of Psychology at Western Washington University. He has held numerous offices in the International Association for Cross-Cultural Psychology and the American Psychological Association (APA). Joseph holds Fellow status in three APA divisions. He is past President of the Society for the Psychological Study of Ethnic Minority Issues and a former council member for the Society for the Psychological Study of Social Issues. He has generated over 130 publications on cross-cultural and ethnic topics in psychology, including 17 edited and coauthored books. His recent books include the Handbook of Ethical Research with Ethnocultural Populations and Communities and Counseling across Cultures (6th ed.).


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Currently, Mariah, a writer and consultant, resides in Tucson, Arizona. During her two-year tenure working for the Tohono O’odham Community College as their first writing instructor, Mariah was also a member of the Tohono O’odham Nation’s Radio Task Force. As an avid writer and perpetual student, Mariah served a total of three years as a student editor for Red Ink: An American Indian Student Publication and has had her poetry published in publications such as Brooklyn Review, Cimarron Review, Salt Fork Review, as well as Sister Nations: A Native American Woman’s Anthology. Elizabeth Kendall, Ph.D., is Research Professor at the Griffith Institute of Health and Medical Research, Griffith University, and Associate Director of the Centre for National Research on Disability and Rehabilitation, at Griffith University and University of Queensland. She has a B.A. in psychology and special education and postgraduate qualifications in rehabilitation psychology. Elizabeth completed her doctorate in 1997 on adjustment following traumatic brain injury and received the Dean’s Commendation for Outstanding Ph.D. Thesis (University of Queensland). She was awarded a Medal for Excellence in Research Supervision in 1999, and all her graduate students have also received commendations for excellence. For the past 20 years, she has maintained both community/clinical practice and a research agenda in the issues faced by people with acquired disabilities or chronic conditions. She has focused on participatory methods for developing innovative service models. Elizabeth has published in over 60 international peer-reviewed journals and books and maintains an active role in the development of non-government organizations that address gaps in service delivery for people with disability or chronic disease. Catherine A. Marshall, Ph.D., CRC, NCC, is Research Professor in the department of Educational Psychology, Northern Arizona University, and Adjunct Professor, Centre for National Research on Disability and Rehabilitation Medicine, Griffith University, Australia. She has more than 25 juried publications. Recently, her work has focused on cancer as a chronic illness/ disability and the impact of the cancer experience on the family. In April 2007, Catherine received a Ruth L. Kirschstein National Research Service Award for Individual Senior Fellowship, funded by the Department of Health and Human Services, National Institutes of Health, National Cancer Institute to support her new work. Catherine is a Senior Scholar with the UA National Center of Excellence in Women’s Health. A Fulbright scholar who researched the needs and resources of Indigenous people with disabilities in Oaxaca, Mexico, her research in Oaxaca was also sponsored for six years by the National Institute on Disability and Rehabilitation Research. Catherine was the recipient of a 1997 National Council on Rehabilitation Education Outstanding Researcher of the Year award for research with American Indian families and chronic illness/disability. She is Founder and President of the nonprofit organization Women’s International Leadership Institute (WILI; www.wili .org), the purpose of which is to benefit low-income women seeking to improve their educational and economic status. Through WILI, Catherine participated in the coordination of the 2004 international forum Participatory


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Action Research and Indigenous Ways of Knowing in Oceania and the United States: Women as Researchers and Partners in Community-Based Disability and Rehabilitation Research.

ABOUT THE CONTRIBUTORS Maria Agorastou, M.S.W., is a Research Associate at the Institute on Disability/UCED at the University of New Hampshire. She has several years of experience in working with children with neurodevelopmental disabilities and their families. Maria is currently working on high school dropout prevention and inclusion of students with severe emotional and behavioral disabilities conducting state-wide trainings for school personnel and health care professionals on inclusive education practices and behavioral supports. Her research interests focus on inclusive education practices, curriculum theory, and personnel preparation, systems’ change, and positive behavioral supports. Maria earned her M.S.W. from the University of New Hampshire in 2003 and is currently working on her Ph.D. in education. Asma Al Attiyah is Assistant Professor at the Special Education Diploma Program within the Psychological Science Department in Qatar University. She is the Vice Chair for the Childhood Committee Supreme Council for Family Affairs and is a Learning Center Board Member at Qatar Foundation for Education, Science and Community Development. Asma has been an active volunteer in the field of children with disabilities and was rewarded for her efforts in Qatar and Egypt from the Social Development Center at Qatar Foundation for Education, Science and Community Development. She has also been acknowledged by the Egyptian Association for her work with the rehabilitation of individuals with disabilities. Joy Bailey is a doctoral student at the University of Indianapolis. Her research efforts include the effects of anxiety on decision-making techniques and the role of psychologists as advocates for their patients. Katy Beggs, M.A., is a doctoral student in clinical psychology at the University of Indianapolis where her research interests include examining familial characteristics contributing to successful treatment with children. She recently completed her internship at the University of Miami Mailman Center for Child Development. Katy is currently a program manager at the Association for University Centers on Disabilities (AUCD) and an advocate for children with developmental disabilities and their families. Patrizia Bertini is a researcher for the EIAO (European Internet Accessibility Observatory), IST (Information Society Technologies) project. Her research interests address the needs of the Information society: e-government, legal issues, e-inclusion policies and strategies, technology development, social computing, accessibility, usability, assistive technologies, user needs, illness that leads to disability, and linguistics.

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Carol J. Blessing, LMSW, has served on the faculty of the Employment and Disability Institute in the ILR School at Cornell University since 2001. Throughout her faculty appointment she has been the Project Director for a variety of initiatives that promote system impact/system change efforts that promote movement from segregated environments to citizenship. Carol has worked with inmates who have developmental disabilities; youth in transition from special education to adult life; adults in state-operated psychiatric facilities and community rehabilitation provider programs to improve communitybased outcomes on behalf of and with people who use disability services. Each initiative places a spotlight on person-centered practices as the primary means for supporting the full inclusion of all people in community living, learning and earning. Carol is the coauthor of A Framework for Planning, an approach to surfacing and mobilizing the natural capacity of individuals and groups that has received national and international attention. Lauren J. Breen, Ph.D., is Postdoctoral Research Scholar in the Centre for Social Research at Edith Cowan University, Perth, Australia. Her research interests center on applied social research in health domains with specific interests in grief and loss, health services, disability, and wellness, and she has interests and expertise in naturalistic research designs and qualitative methodologies. Susanne M. Bruyère, Ph.D., is Director of the Employment and Disability Institute and Associate Dean of Outreach at Cornell University in the School of Industrial and Labor Relations, Extension Division. She is a Fellow in the American Psychological Association, and past president of the Division of Rehabilitation Psychology (22) of of the American Psychological Association, the National Council on Rehabilitation Education, and the American Rehabilitation Counseling Association. Susanne holds a doctoral degree in Rehabilitation Counseling Psychology from the University of Wisconsin–Madison. Robyn Burnett B.Ed. (Early Childhood); Post. Grad. Cert. (Human Services Child Protection Services) resides in Narangba, Queensland, Australia, where she represents the Caboolture Aboriginal and Torres Strait Islander Community. Robyn is studying for her Master of Education in early childhood. Currently, she is Manager of the KIPA Child Protection Agency which provides support to indigenous children on child protection orders, family support, recruitment, training, and support for indigenous foster carers. Robyn provides support for the community on social context issues, funding submissions, and report writing. Her journey has included policy advice on social justice issues, lecturing support of new teachers, and a continued commitment to the indigenous early childhood sector. Robyn has participated at several national and state summits and continues to advocate for the rights of children, families, and the community. Nicholas Buys Ph.D. is Professor and Dean, Learning and Teaching in the Health Faculty at Griffith University, Brisbane, Australia. Formerly he was Head of the School of Human Services and Director of the Research Centre


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for Human Services at Griffith. His professional career is in rehabilitation counseling. Nick has practiced, taught, and conducted research into vocational rehabilitation and disability management over a 25-year period. He was the founding editor of both the Australian Journal of Rehabilitation Counseling and International Journal of Disability Management Research. Nick has a number of publications in the area of rehabilitation and has research interests in the areas of vocational rehabilitation disability management, vocational evaluation, job placement, and career development for people with disabilities. He has also been an external consultant on vocational rehabilitation issues for government organizations on several occasions. Fiona Kumari Campbell B.Leg.St (Hons)., Ph.D., J.P (Qual) is Convenor of Disability Studies in the School of Human Services Griffith University; Adjunct Professor in Disability Studies at the Faculty of Medicine, University of Kelaniya in Sri Lanka; and is a person with disability. She has written extensively on issues related to disability—philosophy, desire, law, and technology. Her current research relates to studies in ableism and South Asian approaches to disability. Her work has appeared in Disability & Society, M/C—Media and Culture, Disability Studies Quarterly, Australian Feminist Law Journal, and in S. Danforth & S. Gabel (Eds.), Vital Questions in Disability Studies and Education (2006). She is working on her first book, Contours of Ableism, to be published by Palgrave. In 1998, she was awarded the D. M. Myers University Medal and Jean Martin Prize in Sociology by La Trobe University for her dissertation on disability, law, and sociology. Cheryl L. Crocker, Ph.D., is Professor at Grant MacEwan College in Edmonton, Alberta. She also teaches at the University of Calgary and Athabasca University. Her teaching areas include disability studies, teacher preparation, and health sciences. Cheryl’s research interests are primarily focused on program evaluation, social and disability policy, and inclusion of children and adults with disabilities in school and community. She is actively involved with community organization, schools, and government with the express purpose of identifying positive practices that promote engagement and inclusion. Marie A. DiCowden, Ph.D., is a nationally known health care psychologist and behavioral medicine specialist. She joined the University of Miami/ Jackson Memorial Hospital staff in the Department of Orthopaedics and Rehabilitation in 1981. Marie maintains her adjunct faculty position at the medical school in addition to faculty affiliations with Nova University and Saybrook Graduate School. In 1988, she founded the Biscayne Institutes of Health and Living and the Biscayne Foundation in Miami, FL. This program was an extension of her work on the medical campus and evolved into the HealthCare Community model. This innovative program provides frontline integrative care for disabled children and adults in addition to integrative health programs for mind and body for the community at large. She serves as Executive Director of this program. Marie is a Fellow of the American Psychological Association and a member and Vice President of Public Policy for the National Academies of Practice.

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Robyn Dorton is a self-advocate trainer who co-presents interactive training sessions through Project STIR (Steps Toward Independence and Responsibility) at the University of North Carolina–Chapel Hill Center for Development and Learning. She received the 2006 NC Self-Advocate of the Year Award from the Association of Self-Advocates of North Carolina. Tuncay Ergene, Ph.D., is Associate Professor in the Counseling and Guidance Program as well as Assistant Director of the Graduate School at Hacettepe University in Ankara, Turkey. He completed his undergraduate training in counseling at Hacettepe University in 1986 and has since obtained master’s and doctoral degrees at Middle East Technical University in Ankara, Turkey, and Ohio University in Athens, respectively. Tuncay has additionally completed postdoctoral studies in the International Mental Health and Developmental Disabilities Research and Training Program at the Harvard School of Public Health. His research interests include policies and procedures in counseling, mental health policy design, and trauma and disaster counseling. Wilson Finks is a self-advocate trainer who co-presents interactive training sessions through Project STIR (Steps Toward Independence and Responsibility) at the University of North Carolina–Chapel Hill Center for Development and Learning. Wilson is a member of the North Carolina Council on Developmental Disabilities and a past president of the Association of SelfAdvocates of North Carolina. Kira Fisher, B.A., has a background in teaching children with disabilities; she was the first AmeriCorps member with a disability in North Carolina. Kira co-presents interactive training sessions and coordinates other selfadvocate trainers at the University of North Carolina–Chapel Hill Center for Development and Learning. Thomas P. Golden M.S., C.R.C., is Associate Director of the Employment and Disability Institute in the ILR School at Cornell University. As a faculty member since 1991, his work has focused on effective practices leading to inclusive and integrated community living, learning and earning for people with disabilities with a specialization in social insurance issues. Thomas has been a contributor to the Rehabilitation Research and Training Center for Economic Research on Employment Policy for Persons with Disabilities and the Disability STATS RRTC at Cornell and received several national citations and awards for his efforts promoting return to work and increased economic self-sufficiency for Americans with disabilities. Thomas has published extensively on disability and employment policy issues and recently completed a curriculum with the International Labor Organization promoting development of nondiscriminatory policy and practices in developing countries as well as a study in Ireland focused on the person-centered modernization of adult day services. Marianne Hedlund, Ph.D., is a researcher at the Department of Social Work and Health Science, Norwegian University of Science and Technology.


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In addition, she holds a position as Associate Professor at Faculty of Health, Nord-Trøndelag University College, Norway. Marianne researches and teaches in various areas of disability studies, with a particular interest on how disability is understood and responded to within society. She is part of the different disability research network in Europe and Scandinavia. Efthalia Kaderoglou, M.Ed., has served special education both in private and in the public sector in the Greek Education system for the past 20 years. She has written several papers on issues of early childhood intervention, partnership with parents, and educational policy for special education. Efthalia is chairing the Hellenic Union of Special Educators and is training teachers and interventionists on a national and international level. Efrosini Kalyva, Ph.D., is Senior Lecturer at the Psychology Department of City Liberal Studies in Thessaloniki, Greece. She has written two books and several papers on individuals with special educational needs. Efrosini is also working as a therapist of children and adolescents with autism spectrum disorders and developmental disabilities. Charlene M. Kampfe, Ph.D., is Associate Professor in Rehabilitation at the College of Education, University of Arizona. She has written extensively on aging issues and is a proponent of the connection between rehabilitation and aging. Charlene’s other research interests are transition, coping, and rehabilitation pedagogy. She has received many research, service, and teaching awards. Among her research awards are the Outstanding Research Award from Chi Sigma Iota (1991), the Outstanding Article Award from ADARA (1999), the Memorial Research Award from the American Counseling Association (2002), and the Best Practices Research Award from the American Counseling Association (2003). Among her service awards are the Distinguished Service Award from the Association for Adult Development and Aging (1995), the Outstanding Member Award from the Arizona Counselors Association (1998), the Sarah Folsom Memorial Award from the Arizona Rehabilitation Association (1998). In 2007, the Charlene M. Kampfe Student Fund was officially designated by the American Rehabilitation Counseling Association. In 2008, Dr. Kampfe received the Rehabilitation Educator of the Year Award from the National Council on Rehabilitation Education. Rae Kelly B.Com.Welfare, Grad.Dip.Women’s Studies is a descendent of the djiru clan in North Queensland in Australia. She was born in Innisfail in 1938 and was raised on Mona Mona Mission from the age of three years. Rae has been involved with Indigenous women’s business over the past thirty years and is the Coordinator of the Innisfail Indigenous Women’s Social Emotional Well–being Corporation. She is a Management Member of three high profile Committees (Townsville Aboriginal / Torres Strait Islander Women’s Legal Services; 2008 – 2010; Qld Jupiter Gambling Benefit Funding; Qld Ministerial Advisory Council Family and Domestic Violence in rural and remote areas) and is now on the Board of Directors for the Warrina Aged Home.

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Steven M. Koch, Ph.D., H.S.P.P., is an Adjunct Assistant Professor for the Department of Pediatrics, Indiana University School of Medicine. He is a school psychologist on the interdisciplinary team at the Riley Child Development Center, where he assesses children with suspected intellectual and neurodevelopmental disabilities. In 1998, he was given the Friend of Children Award for his work on measuring outcomes for children in foster and residential care. Angela Kuemmel, M.S., is a doctoral student at Nova Southeastern University’s Center for Psychological Studies. She is currently a psychology intern at the VA Boston Healthcare System. Angela’s research and clinical interests are rehabilitation psychology, neuropsychology, and education and training. Rebecca Kuemmel, MPT, recently graduated with her Masters degree in Physical Therapy from Saint Louis University and plans to work at Cincinnati Children’s Hospital. Her interests include pediatrics, rehabilitation research and disability advocacy. Bodil J. Landstad, Ph.D., is Associate Professor in Rehabilitation Science at the Mid Sweden University, Department of Health Sciences, and at the Faculty of Health Science at Nord-Trøndelag University College, Norway. Bodil’s dissertation was completed in rehabilitation medicine at the Karolinska Institutet in Sweden. Her research interests are mainly in the area of public health, prevention, and early rehabilitation measures at the workplace. Bodil has widespread international publications in these areas of interest. George I. Mamboleo is a Ph.D. candidate at the University of Arizona. He has a master’s degree in Rehabilitation Counseling from Bowling Green State University. George worked with disadvantaged children in Kenya before embarking on further studies. He has presented papers in national and international forums and has published in peer refereed journals. George’s research interests include international rehabilitation issues, attitudes toward disability, counseling and education, and aging and disability. Edward O. Manyibe, Ph.D., C.R.C., is Assistant Professor at Langston University, Department of Rehabilitation Counseling and Disability Studies. He has worked for several years with non-governmental organizations (NGOs) in Kenya and the United States. Edward has published in refereed journals and presented at national and international conferences and meetings. His research interests include internationalization of rehabilitation, program evaluation, and internships. Edward has received several service and academic awards and he is a Certified Rehabilitation Counselor. Joseph Marrone, M.Ed., is based in Portland, OR, and is employed as a Senior Program Manager for Public Policy at the Institute for Community Inclusion at the University of Massachusetts, Boston, where he provides training, technical assistance, and program consultation to public agencies and private providers nationally and internationally in all 50 U.S. states, Puerto Rico, Canada, Europe, and Asia. He has lectured and published extensively


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on policy and program issues in psychiatric rehabilitation, program management, policy development quality assurance, and program accountability in human services, welfare to work issues, and consumer empowerment. Marcellina Mian is Professor of Pediatrics at Weill Cornell Medical College in Qatar. She has been active in the field of child maltreatment prevention for many years in Canada and in other parts of the world. She is past president of the International Society for Prevention of Child Abuse and Neglect and a consultant to the World Health Organization on this issue. Heidi Muenchberger Ph.D., MPsych(Neuro), BBehSc(Hons) is a Senior Research Fellow at the Research Centre for Clinical Practice Innovation, Griffith University, and has worked in the area of neurorehabilitation for the past 15 years. As a clinical neuropsychologist, she has primarily worked with people who have experienced a life-changing neurological disorder and in 2007 she completed a Ph.D. that examined the evidence base for rehabilitation to improve outcomes. Her research to date has concentrated on the impact of injury for individuals and their families. This work has informed her current research agenda, which aims to investigate the broader rehabilitation and disability context and interagency partnerships to improve the management of serious injury and chronic disease. George C. T. Mugoya is a doctoral student at the University of Arizona, Rehabilitation Counseling Department. He obtained a master’s degree in Rehabilitation Counseling from Bowling Green State University. George is a Certified Rehabilitation Counselor and a member of the American Counseling Association. He has been working as a substance abuse counselor for over two years. His research interests include substance abuse and prevention of infectious diseases. Kerim Munir, M.D., M.P.H., D.Sc., is Director of Psychiatry, University Center for Excellence in Developmental Disabilities Program in the Division of Developmental Medicine, and Associate in Psychiatry, Department of Psychiatry, Children’s Hospital, Harvard Medical School, in Boston. Kerim completed adult psychiatry training at Massachusetts General and child psychiatry training at McLean hospitals, Harvard Medical School and holds a doctorate in science from Harvard School of Public Health. Kerim currently directs the Fogarty International Center and NIMH-funded research training programs in Mental Health and Developmental Disabilities at the Children’s Hospital, Boston. He also directed the Ministry of Health sponsored project leading to the development of National Mental Health Policy for the Republic of Turkey in December 2006. His areas of interests include autism, developmental and intellectual disorders, developmental epidemiology and psychopathology, as well as research education and ethics. Maureen Parkinson, M. Ed., C.C.R.C, has worked at the B.C. Cancer Agency for over 13 years as a vocational rehabilitation counselor and is the only vocational rehabilitation counselor working in a cancer agency in Canada.

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She is a Canadian Certified Rehabilitation Counsellor and is an executive member for the Canadian Association for Psychosocial Oncology, founding board member for the Brain Tumour Network, and the sociobehavioral representative on the Central Nervous System—Clinical Trials Team for the National Cancer Institute of Canada. As well, Maureen has been a member of the conference planning team for two Cancer Rehabilitation Conferences focusing on survivorship. She is currently funded to research rehabilitation needs for brain tumor patients. Maureen has supervised occupational therapy students studying vocational issues for prostate and breast cancer survivors. Her current research interests are survivorship, disability management, rehabilitation, and vocational rehabilitation for cancer patients. Christine Randall, B.Phty., M.Hu.Serv.Hons.(RC), is Lecturer in Rehabilitation Counselling in the School of Human Services at Griffith University, Australia. She is also an associate member of the Research Centre for Clinical and Community Practice Innovation at Griffith University and a founding director of the Rehabilitation Counselling Association of Australasia. Christine’s research and publications focus on entrepreneurial job development for people who experience mental illness, occupational rehabilitation systems and workplace stress, rehabilitation counseling competencies, disability management, and case management. She is currently completing her doctoral research on stress and rehabilitation in the workplace and has been invited to present at a number of national and international forums on this issue. Sherry Saggers, Ph.D., was formerly Foundation Professor of Applied Social Research and Director, Centre for Social Research at Edith Cowan University, Perth, Western Australia. In 2008, she commenced as Professor in the National Drug Research Institute, Curtin University of Technology, Perth. An anthropologist, she has researched and written widely on health sociology, including indigenous health and substance misuse, the social determinants of health, and social models of health in disability. Rebecca Spirito-Dalgin, Ph.D., C.R.C., is Assistant Professor of Rehabilitation Counseling in the Counseling and Human Services Department at the University of Scranton, Scranton, Pennsylvania. Her research and clinical experience focuses on psychiatric rehabilitation. Filippos Stefanidis, B.A., has been serving as a teacher at an inclusion unit for the past 15 years. He is the founder and administrator of the most popular Greek Web page on special educational needs issues, www.specialeducation.gr. Åsa Svensson is a Ph.D. student and Lecturer at the Department of Health Sciences, Mid Sweden University. She has a long experience working with disability issues in Swedish Disability Organizations and is an expert member of their Science Foundation Board. Åsa’s research focus is how people with disabilities get opportunities to participate in social arenas of life.


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Jacqueline Remondet Wall, Ph.D., H.S.P.P., C.R.C., is an Associate Professor in the School of Psychological Sciences at the University of Indianapolis. Trained in rehabilitation and industrial-organizational psychology, much of her work has been consulting with organizations that provide human services, including developing methods of monitoring outcomes. Joe E. Wheaton, Ph.D., is Associate Professor in Special Education and Rehabilitation Services in the College of Education and Human Ecology (EHE) at Ohio State University. He teaches courses in accessible Web design and assistive technology. He is also the faculty liaison between the EHE and the Web Accessibility Center, which conducts Web accessibility training and assessments and which he helped found in 2001. Joe’s research interests include examining how persons with disabilities use the Web and solving the problems they encounter. He is also working with other researchers at Ohio State on identifying new, portable assistive technologies that will allow persons with disabilities to access the Web from anywhere. Deborah Zuver, M.A., L.M.F.T., R.D.T./B.C.T., directs Project STIR (Steps Toward Independence and Responsibility) at the University of North Carolina–Chapel Hill Center for Development and Learning. She has a background in applying interactive approaches as learning tools. Deborah works with self-advocate trainers to prepare and present training workshops in leadership and self-advocacy across the state and nationally.

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