Resistance, Reflection and Change - Nordic Disability Research

The Editors: Anders Gustavsson Johans Sandvin Rannveig Traustadóttir Jan Tøssebro Resistance, Reflection and Change No...

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The Editors: Anders Gustavsson Johans Sandvin Rannveig Traustadóttir Jan Tøssebro

Resistance, Reflection and Change Nordic Disability Research

Copying prohibited All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or any information storage and retrieval system, without permission in writing from the publisher. The papers and inks used in this product are eco-friendly.

Art. No 31915 ISBN 978-91-44-05287-8 © The authors and Studentlitteratur 2005 Cover design by Patrik Sundström Printed in Sweden Studentlitteratur, Lund Web-address: www.studentlitteratur.se Printing/year 1

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Contents

Contributors 11 Preface 17 References 19 Foreword 21 Introduction: approaches and perspectives in Nordic disability research 23 Anders Gustavsson and Jan Tøssebro in collaboration with Rannveig Traustadóttir Social engineering, social critique and the reformer’s perspective 24 Normalisation, integration and deinstitutionalisation 27 Recent trends in Nordic disability research 29 Gender studies 31 Understanding disability: recent theoretical developments 32 Five variations of the relational perspective 34 The state of current Nordic disability research 38 References 39

I Policies and Practices 1

Paradigms of disability services in Finland 47 Timo Saloviita Differentiation of disability services and the major division within the disability field 49 The growth of the institutional model for people with mental disability 50

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The rehabilitation paradigm 52 The support paradigm 54 References 56 2

Gradual improvement or deterioration in disguise? 59 Johans Tveit Sandvin and Willy Lichtwarck Introduction 59 A retrospective glance 60 Changing discourses 62 Post-institutional practices 64 A critical obligation 68 For better or for worse? 69 A normative conclusion 70 References 71

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In pursuit of a measure of generosity in Swedish disability care 75 Barbro Lewin and Lina Westin Introduction 75 In search of variables expressing generosity 77 In search of the underlying dimensions of generosity 82 Concluding remarks 84 Acknowledgements 87 References 87

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Owners of chemistry, hope and evidence 89 Kristjana Kristiansen Introduction 89 What is “recovery” and what is “recovery research”? 90 Hope: who controls the upward climb? 92 “Therapeutic chemistry”? 94 Subjectivity: pathology or path? 95 Owning reality and evidence 96 Is turning better than looping? 98 Recovery: ambiguous imagery, magnets and movement destined to splinter? 100 References 101

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Perception and practice 105 Helge Folkestad “It’s our job to make it work for them to live here” 106 A twofold strategy 107 Characterisation 109 Social representations 110 How characterising typically influences interactions 111 Focus and orientation 111 Four styles of practice 112 Concluding remarks 116 References 116

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Management and professionalism in social-educational care work 119 Jesper Holst The Service Act and a development project 119 Interior and buildings 121 Care and management 125 Normalisation and user influence 129 References 130

II Narratives and Identity 7

Stories about professionalism drawn from the archives of a women’s institution 135 Birgit Kirkebæk Else Helene Antonsen and her case records: her life as told by others 135 Three stories told by staff about the history of Sprogø 138 Scientific stories about correct diagnosis 139 Correct professionalism as described by the staff themselves in letters and case records and by others in newspapers 142 Quote migration and shifts in quotes 144 Stories as part of the theories of the time 146 References 146


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8 Adult children of mothers with intellectual disabilities: three life histories 147 Rannveig Traustadóttir and Hanna Björg Sigurjónsdóttir Introduction 147 The study 147 Three life stories 149 Sunna 152 Discussion 157 References 159 9 I am, and I am not: identity, a multifaceted concept and social phenomenon 163 Karin Barron Introduction 163 Some meanings of identity 164 The social construction of intersected identities 166 Ambivalence 169 United “we” stand 172 A change of spectacles 172 References 174 10 Minority politics and disability discourse at global deaf events 177 Per Solvang, Jan-Kåre Breivik and Hilde Haualand Introduction 177 Perspective 178 A method for studying transnational events 179 The temporary structure 180 Minority politics 182 The politics of sport 184 Closing discussion 186 References 188

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III Categorisation and Disability 11 Biological and social aspects of intellectual disability 193 Karin Sonnander Different perspectives: what one sees and how one sees things 193 An epidemiological perspective 193 International classification systems 194 A relativistic perspective of intellectual disability 195 A constructionist perspective 198 Pupils with poor cognitive ability in regular school 198 Discussion 200 Acknowledgements 201 References 201 12 Social exclusion and human diversity in face-to-face encounters 205 Borgunn Ytterhus A single question from a little girl – a great challenge for humanity 205 Who are the intellectually disabled? – demarcation, cut-off points and models of understanding 208 Human diversity, mixed identities, emotions and existence 210 From an individual moral code towards a phenomenology of responsibility and solidarity towards the Other 212 To make the moral social and political – an attempt to overcome social exclusion 214 References 216 13 A relational perspective on disability: an illustration from the school system 219 Magnus Tideman Introduction 219 Views change over time 220 The special school expands 222 Different understandings of disability 223 Characteristic, oppression or relation? 224 © The authors and Studentlitteratur

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Shortcomings of the school or the individual? 225 Disability as a relational concept 227 The individualisation of social problems 228 Generic efforts: special support 229 References 230 14 “Attitudes” as an observational artifact 233 Wendelin Reich and Dimitris Michailakis Introduction 233 The logic of attitude observations 234 Individuals as attitude-bearers 235 Attitudes and social populations 238 The scientific functions of attitude observations 240 Conclusion 243 References 244

IV Participation and Inclusion 15 Some themes within the realm of research on special education 249 Jerry Rosenqvist Introduction 249 A retrospective outline 251 Some crucial concepts 253 Some important studies 254 “The big challenge” 256 Concluding remarks 259 References 261 16 Tensions and dilemmas in the field of inclusive education 265 Susan Tetler Which approach dominates in the Scandinavian countries? 266 The gap between rhetoric and reality 267 The nature of dilemmas 268 Tensions and dilemmas in the field of inclusive education 269 8


Conclusion 274 References 275 17 Participation and general competence 277 Mats Granlund and Eva Björck-Åkesson Constitutive characteristics and their operationalisations 278 Is a systems-theory approach to studying interventions for children in need of special support an option? 281 Conclusion 289 References 290 18 Nordic disability research: reflections, not conclusions 295 Tom Shakespeare References 301


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Contributors

Contributors

Karin Barron is Associate Professor in Sociology at Uppsala University, Sweden. Her line of research focuses on sociological perspectives on gender and disability. She has published most of her research in the areas of autonomy, research ethics and identity. Barron has carried out qualitative research with young women and men with physical impairments, and with women with intellectual impairments of different generations, and is editor of a Swedish anthology on gender and disability. She is also co-editor, together with Professor Anders Gustavsson, of the Scandinavian Journal of Disability Research. Eva Björck-Åkesson is Professor of Education with an emphasis on Early Intervention, Habilitation and Special Education. She is one of two directors of the CHILD research programme. In CHILD, about 20 projects on interventions and issues related to intervention for children in need of special support are currently being implemented. Eva’s research is especially focused on developing and validating a child and youth version of the WHO’s health classification system, ICF. Jan-Kåre Breivik is a Social Anthropologist and involved in Deaf Studies. Breivik is a researcher at the Stein Rokkan Centre for Social Studies in Bergen, Norway. Helge Folkestad originally qualified as a Social Educator in Denmark (1976). During the following years he worked in various capacities within the services and direct care for people with intellectual disabilities in Norway. Since 1987 he has been a teacher of the Norwegian equivalent to his own basic training. His article here reports on the study he did for his doctorate in Sociology, a work for which © The authors and Studentlitteratur

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Resistance, Reflection and Change

Mårten Söder was advisor and mentor. Folkestad is employed as Associate Professor at Bergen University College, The Institute for Social Education and Social Work. Mats Granlund is Professor of Psychology, with an emphasis on disability, intervention and health. Mats is one of two directors of the CHILD research programme. In CHILD, about 20 projects on interventions and issues related to intervention for children in need of special support are currently being implemented. Mats’ research is especially focused on participation and factors related to a high degree of participation for children and young people with severe disabilities. Anders Gustavsson is Professor of Education, especially Social Pedagogics and Disability Research, at the Department of Education, Stockholm University. He also has a part-time affiliation as Professor at the Department of Social Work at the same University. For more than 30 years he has studied social meaning making in the disability field with a special focus on people with intellectual disabilities and their own understanding of impairments and disabilities. Two of his current research programmes cover school and societal participation and lived citizenship. He is also co-editor, with Karin Barron, of the Scandinavian Journal of Disability Research. Hilde Haualand is a Social Anthropologist and involved in Deaf Studies. She is a PhD candidate at The University of Oslo and a researcher at the Fafo Institute for Applied Social Science in Oslo, Norway. Jesper Holst is Associate Professor at the Danish University of Education. Before working at the University he spent ten years as a teacher and headmaster at residential schools for children with social and emotional problems. He has published and researched in the field of Social Pedagogy and Special Needs Education. During the last ten years he has been working with street children, inclusive education and disability matters in Romania, Mongolia and Nepal. Birgit Kirkebæk was born in 1938. She has a doctoral degree in Education and was Associate Professor at the Royal Danish School of Educational Studies 1988–2000 and Professor II at the University of 12


Contributors

Oslo 1995–2000. Before this she worked as a head teacher of special schools. Since her retirement in 2000 she has continued to be an active researcher in the areas of disability history and communication. Kristjana Kristiansen is a Psychologist with a doctoral degree in Public Health. She is currently Associate Professor in the Department of Social Work and Health Sciences at the Norwegian University of Science and Technology in Trondheim, where she teaches in the areas of research methodology, gender studies and disability studies. Her major research interests are in disability/mental health reform, living conditions for marginalised groups, participatory research, violence and abuse. She is the current secretary of the NNDR, Nordic Network on Disability Research. Barbro Lewin, PhD, works in the Faculty of Medicine, Department of Government at Uppsala University, Sweden. She was previously Director of the Centre for Disability Research at Uppsala University and a researcher at the Department of Public Health and Caring Sciences. Her main scientific research interest is the implementation of Swedish disability policies. Willy Lichtwarck, PhD, is Associate Professor at Bodø Regional University and Researcher at the Nordland Research Institute. He has published and researched in the areas of disability and child protection. Dimitris Michailakis is Associate Professor of Sociology at Gävle University. For the last ten years he has carried out research in the field of Disability Studies. He applies Niklas Luhmann’s sociological systems theory in order to illuminate the highly complex phenomenon of disability. Currently he is engaged in two research projects; the first is about inclusion of disabled people in the labour market and the second is about verbal interaction between blind and seeing people. Wendelin Reich received his PhD in 2003 from Uppsala University and is currently Assistant Professor in Sociology at Gävle University, Sweden. His interests are both in disability research and more generally in sociological issues, including theory. He is currently working on a project on “problems and solutions in social interaction © The authors and Studentlitteratur

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between blind and sighted persons” (funded by Swedish FAS). The project combines conversation-analytical (Sacks) with systems-theoretical (Luhmann) ideas and methods. Jerry Rosenqvist is Professor of Special Education at Malmö University and Professor of Education at Kristianstad University College. He has headed several national research projects, especially regarding issues of school integration. He has also been involved in school and teacher-training projects in Afghanistan, Jamaica, Peru and Tanzania. In addition to his regular tasks, his commissions have included being an expert for the OECD in Paris, external examiner at the Pedagogical University of Denmark and member of an evaluation team at Högskoleverket (the National Agency for Higher Education). Timo Saloviita, PhD, is currently a Professor of Special Education in the Department of Teacher Education at the University of Jyväskylä, Finland. He started his professional career as a psychologist in an institution for people with intellectual disabilities. His doctoral dissertation (1990), for which Professor Mårten Söder acted as an invited opponent, was about the measurement of adaptive behaviour of people living in these institutions. Saloviita is currently active in the fields of inclusive education and supported employment. Johans Tveit Sandvin is Professor of Sociology and Social Work at Bodø University in Norway and Professor of Human Services at Luleå University of Technology in Sweden. His main areas of research are social history, social policy and disability studies. Tom Shakespeare was trained in Sociology at the University of Cambridge, and has been active in disability politics since his student days. He currently works in the field of bioethics and science engagement, although he continues to write and research about disability. With colleagues, he has written or edited six books in the field of disability studies, including The Sexual Politics of Disability (1996) and The Disability Reader (1998). Hanna Björg Sigurjónsdóttir is Assistant Professor in Disability Studies in the Faculty of Social Science at the University of Iceland. She has worked as an advocate and researcher with people with disabilities 14


Contributors

for many years. Most recently her work has focused on parents with intellectual limitations and family-support services. She has coauthored a book with Rannveig Traustadóttir entitled: Ósynilegar fjölskyldur: Seinfærar/throskaheftar mædur og börn theirra (Invisible families: mothers with intellectual limitations and their children), Reykjavík, University of Iceland Press (2000). Per Solvang is Professor in the Department of Sociology, University of Bergen. His work in Disability Studies includes life-course perspectives, studies on the medicalisation of schoolchildren and discussions on disability as a valuable difference rather than an object for normalisation. Karin Sonnander is Professor of Habilitation, specialising in Disability Research, at the Department of Public Health and Caring Sciences, Uppsala University, Sweden. Her main areas of interest are disability, especially intellectual disability, social care, developmental psychology and social psychiatry. Susan Tetler, PhD, is Associate Professor at the Danish University of Education, Copenhagen. She is coordinator of a Master’s Programme in Special Educational Needs and Disability Studies and leader of the research unit “Special educational needs from an inclusive perspective”. Her research interests include pedagogical dimensions of inclusive learning communities. Magnus Tideman received his PhD in Social Work and works as Senior Lecturer with an emphasis on Disability Studies at Halmstad University, Sweden. His research is focused on living conditions for people with disabilities and questions about normality and deviancy in schools. Rannveig Traustadóttir is Professor in the Faculty of Social Science at the University of Iceland where she teaches about disability, gender, diversity and qualitative research methods. She is one of the pioneers in researching the intersection of gender and disability. Other research interests include disability and family life, life-history research, care work and disabled people’s participation in everyday life. Rannveig has been active in Nordic disability and feminist research. She is the current president of NNDR, the Nordic Network on Disability Research. © The authors and Studentlitteratur

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Jan Tøssebro, PhD in Sociology, is Professor of Social Work in the Department of Social Work and Health Science at the Norwegian University of Science and Technology. His main research interests have included disabled peoples’ living conditions, inclusion and deinstitutionalisation (for example, a ten-year follow-up study of the closure of institutions for intellectually disabled people in Norway), and the experiences of disabled children and their families. He has been a member of two Public Committees, one on disability policy and one on disability rights legislation, and is currently the Chair of the Norwegian State Council on Disability. Lina Westin received an MA in Political Science from the Department of Government at Uppsala University. Her main research interest is public administration. She is currently working as a Research Assistant on the project A kinder, gentler democracy? Disability politics in Swedish municipalities, in the Department of Government at Uppsala University. Borgunn Ytterhus is a Nurse and Sociologist. She works as Associate Professor at the Norwegian University of Science and Technology (NTNU) in Trondheim, in the Department of Social Work and Health Science. For years she has worked with social inclusion and exclusion among children and young people with and without disabilities. In 2002 she published the book Sosialt samvær mellom barn – inklusjon og eksklusjon i barnehagen (Social interaction among peers – inclusion and exclusion in nursery schools), Oslo Abstrakt. The book has been translated into both Swedish and Danish.

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Preface

Preface

In a recent evaluation of Swedish Research on Disability, the members of the international group of experts concluded that they were “impressed by the scope of Disability Research underway in Sweden”. But they also pointed out, in accordance with the experiences from a number of other countries, that this research is still an emerging field (Albrecht et al., 2001, p. 5). However, in contrast to other international findings, the majority of the research mentioned in Sweden was carried out within the domain of social sciences. With some minor modifications, this description could probably be extended to the other Nordic countries as well. Accordingly, one could assert that this emerging field has been steadily growing over the last few decades. But this development has been characterised by its close connection to changes in the welfare state. For example, various modifications in the Nordic Welfare Model, as well as the development of new forms of disability care, have led the disabled people concerned to call for research on how these changes have actually been experienced in everyday life. But there are also areas within this field that seem to be more loosely linked to the implementation of disability policy or modifications in the welfare state in the Nordic countries. The research on gender and disability might constitute such an example. The contributions to the present anthology provide a broad overview of some major characteristics of the research on disability from the whole body of Nordic countries: Sweden, Norway, Denmark, Iceland and Finland. In a general introduction, three of the editors, Anders Gustavsson, Rannveig Traustadóttir and Jan Tøssebro, provide an overview of the main features of the Nordic development and its various orientations. In the chapters that follow we are introduced to some of the major areas of current Nordic disability © The authors and Studentlitteratur

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research. Although neither comprehensive nor representative, this collection does, nevertheless, provide an overview of a rich and fast-developing field of study. In any area, such as the emergence of new scientific fields, there is always one person who stands out among his or her contemporaries, acting as a pathfinder. In the developing field of Nordic social disability research, there is no question that Mårten Söder has fulfilled this role. His contributions to the development of disability research can be described in a number of ways, perhaps best illustrated by the fact that very few scientific works – be it articles, dissertations or reports, etc. – have been published in the Nordic countries in the last two decades without referring to at least some of his works. One can also register Söder’s importance through his contributions to – and analyses of – social research on disability in general, as well as various areas within the field, such as special education and housing for people with intellectual disabilities. Of particular importance is his scrutiny of the methods used. Another important theme of Söder’s contribution is how he constantly challenges the perspectives taken for granted by researchers and others, such as the perspectives of policy-makers or those implementing various disability schemes, for example in evaluation research. By this constant scrutiny of the prevailing ideology, as well as the dominant epistemological and methodological points of departure within the disability field, he has – through his twisting and turning – laid the cornerstones for a critical tradition within Nordic social disability research. The origin of Resistance, Reflection and Change: Nordic Disability Research can be traced to the many active researchers within the Nordic Network on Disability Research (NNDR). In the development of this network and also the Scandinavian Journal of Disability Research (SJDR), Söder’s work in striving to establish a scientific meeting place has been of decisive importance. An appropriate way for us, his colleagues, to show him our appreciation, now as he begins his seventh decade, is to present him with an overview of the state of the art in Nordic Disability Research. We dedicate this “Festschrift” to Mårten Söder as a modest token of our gratitude for all the inspiration and critical scientific consciousness he has shared with us over the years. Knowing him, he will take this book and, in his unobtrusive manner, read and dissect it with his charac18


Preface

teristic critical approach and judge it purely on the basis of its qualities or shortcomings. Resistance, Reflection and Change: Nordic Disability Research is the third volume in the series “Social Research on Disability”, published by the Swedish publisher Studentlitteratur. The overall ambition of the series is to present Nordic contributions which explore issues of disability to an international audience. This will be done in the form of both monographs and anthologies, as long as the topic at stake is of international interest. The target group is primarily researchers from different disciplines within the disability field or people who take a special interest in this field. But the books in this series will hopefully also be accessible and interesting to students at different educational levels, as well as to people with disabilities, their relatives, and professionals within the field, politically active people and the interested public at large. Together with the volumes Exploring the Living Conditions of Disabled People (edited by Jan Tøssebro and Anna Kittelsaa) and Gender and Disability Research in the Nordic Countries (edited by Kristjana Kristiansen and Rannveig Traustadóttir), both recently published, Resistance, Reflection and Change: Nordic Disability Research constitutes the first wave in what we hope will be a constant flow of stimulating research contributions written in the critical spirit of Nordic social science disability research. Lund and Laholm, January 2005 Ove Mallander

Magnus Tideman

Series Editors of “Social Research on Disability”

References Albrecht, G., Jette, A., Petrie, H. & Siegel, L. (2001). An evaluation of Swedish Disability Research. Stockholm, the Swedish Council for Working Life and Social Research.


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Foreword

Foreword

The purpose of this book is to introduce contemporary Nordic disability research to an international audience. Disability research is a growing interdisciplinary field in the Nordic countries and a wealth of research and writing has taken place in recent years. Most of it, however, only exists in the Nordic languages and has been inaccessible for people in other countries. Publishing this volume in English is an attempt to amend this. Although the book is not a representative sample of current Nordic disability research, it provides a fairly good introduction to the kinds of research and approaches most commonly used. In presenting this volume we also wish to honour Mårten Söder, Professor at Uppsala University, as he celebrates his 60th birthday. The exploration of disability from social and environmental perspectives owes much to his pioneering work. Trained as a sociologist, he holds the fundamental view that things can only be understood in relation to their broader social and historical contexts, a view that has strongly influenced the Nordic approach to disability. As has his critical perspective which challenges us to analyse the ways phenomena are embedded in complex relations of interests and power. NNDR, the Nordic Network on Disability Research, was established in 1997. It is an interdisciplinary network of researchers using social, historical, cultural and environmental approaches to disability. Although a relatively young network, NNDR has provided an important and supportive context for disability research in the Nordic countries. In 1999, NNDR launched a scholarly journal, the Scandinavian Journal of Disability Research, SJDR, published in English in order to strengthen ties to the international research community. Mårten Söder has been at the centre of NNDR activities from the outset. On behalf of NNDR, I would like to express my © The authors and Studentlitteratur

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gratitude for his important contributions to the Network and for his leadership in establishing Nordic disability research as a field of study. One of NNDR’s purposes is to promote and encourage international exchange and collaboration. This volume is intended as an important step in this direction. Reykjavík, January 2005 Rannveig Traustadóttir, President of NNDR

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Introduction: approaches and perspectives in Nordic disability research

Introduction: approaches and perspectives in Nordic disability research Anders Gustavsson and Jan Tøssebro in collaboration with Rannveig Traustadóttir

In a recently published article, Tom Shakespeare (2004) described his encounter with Nordic disability research in the following way: Having spent nearly fifteen years arguing about the British social model, it was curious to arrive at the 2002 NNDR conference in Reykjavik to continue the conversation with a new group of colleagues. It was chastening to realise that there had been a parallel debate in the Nordic countries dating back to the 1970s, and interesting to hear similar criticism and new insights from across the North Sea (Shakespeare, 2004, p. 8).

Shakespeare is probably not the only non-Nordic disability researcher who has discovered interesting, but previously unknown, discussions in Nordic social research on disability. To some extent this is a problem of communication. There have been relatively few Nordic publications in non-Nordic languages. Few Nordic researchers are well known in other countries and a Nordic journal in English, the Scandinavian Journal of Disability Research, is a recent development. However, Nordic disability research began to develop as early as the 1960s, mainly in Sweden, but later in Norway and also in Finland, Denmark and Iceland. The emergence and development of disability research was, and partly still is, closely linked to the welfare state: to disability services and service systems, to new programmes and social reforms. The welfare state set the agenda for disability research, so to speak. The link with social reforms offered opportunities for studying how societal conditions and public policy influenced the lives of disabled people, but, on the other hand, it also limited the scope and perspectives of this research. Some would argue that disability © The authors and Studentlitteratur

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research was and still is too tied to public policy. However, even in the early years some social scientists also played the role of critical observers of current policy and ongoing reforms. The Swedish sociologist Mårten Söder was a pioneer in this role, scrutinising, among other things, the “hidden agendas” behind ideas such as integration and normalisation (Söder, 1979, 1981). In recent years, the mainstream of welfare-state-related research has also been complemented by new approaches. In this brief introduction we cannot, of course, do justice to the variety of themes, perspectives and approaches that constitute Nordic disability research. We will only address a few broad but important areas. We start out with an analysis of the large body of welfarestate-related research. Thereafter, recent developments are briefly outlined, with the exception of gender studies that are discussed rather more fully. In the final part we highlight recent developments in theoretical approaches in Nordic disability research, in particular the theoretical understanding of disability and disablement.

Social engineering, social critique and the reformer’s perspective In a review of Swedish research on intellectually disabled people in the late 1980s, Gustavsson and Söder (1990) pointed out the strong links between disability research and the welfare state. They argued that existing research was dominated by what they called “the reformer’s perspective”. This perspective is defined by the researcher’s role as a “controller” of ongoing reforms and programmes, but does not ask any further questions about how the reforms should be understood, how disability is conceived in the reform context and so on. The basic approach is to study the implementation and outcomes of reforms and programmes and to evaluate whether they have worked or not. Politicians, civil servants and other reformers set the agenda, whereas social research addresses the consequences. This profile has also been pointed out in a review of special education research in Norway (Haug, 1999) and is referred to as the “does-it-work?” approach in Bogdan and Taylor’s (1987) critique of US research in the field of intellectual disability. 24



The link between research and politicians/civil servants/reformers is, however, far from unique to disability research. It has a long tradition in the Nordic welfare states. The classic example is the role of economics from the 1930s onwards as an instrument of national economic planning. This can be seen as the prototype of the broader “social engineering” – the utilisation of science to plan and organise society and social services. According to this tradition, the relationship between research and governance is that of an alliance, and the role of research is to be an instrument. However, welfare research, including disability research, never developed into this kind of planning tool, teaching politicians “how to do it”. Retrospective evaluations of reforms or programmes, initiated by the political establishment, were more typical. The link to policy was and is, nevertheless, strong. An empirical study of the relationship between welfare policy and welfare research in Norway (Martinussen, 1998) concludes that policy and, in particular, public committee reports tend to lead research and actually feed the scientific community with both concepts and research problems: “there is little empirical support for the thesis of social research as an avantgarde” (p. 176, our translation). The image of what Söder (1995) has called the “evaluation trap”, a social scientist stuck in the reformer’s perspective, is evident. This type of research is probably of interest to an international audience to the extent that the evaluated programmes and policies are of interest (which is frequently the case). This “social engineering” is, however, only part of the picture. The relationship with politics does not imply that the bulk of evaluative research tends to be uncritical or supportive of the political establishment, applauding the current condition of the welfare state. On the contrary, criticism and opposition are more typical. What seems to have taken place is some kind of merger between “applied reform research” and “the critical empiricism” that emerged in the 1960s (Tøssebro, 2001). This critical empiricism was in explicit opposition to the political establishment. The agenda was to expose social problems, point out injustice and identify groups living in poverty or unacceptable living conditions. The intention was to show that the welfare state did not include everyone and that the Nordic countries did not live up to the wholesome image the political establishment was trying to promote. The research strategy was to confront accepted political ideals with the © The authors and Studentlitteratur

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harsh realities experienced by marginalised groups: to mobilise “the prevailing political ideals (…) in order to disclose the social reality” (Slagstad, 1998, p. 387, our translation). Yngvar Løchen’s (1965) book on “ideals and realities in psychiatric hospitals” can in this respect be seen as prototypical. What seems to have happened is that much applied social research, including disability research, has inherited the research model typical of the critical empiricism of the 1960s. The most common research question is whether the political aims of a certain programme have been fulfilled; that is, the post-reform reality is confronted with prevailing ideals. Researchers ask, for instance, whether the current reality in schools is consistent with the ideals of inclusion policy. Some would claim that research reports within this tradition tend to be not only critical but over-critical. One may agree or disagree with such a point of view, but the logic of the research model is to take the ideals of current political rhetoric seriously, probably more seriously than any politician intended. This may easily lead to a critical attitude. The strong critical perspective adopted by Nordic disability researchers has sometimes been misunderstood by researchers from other countries as opposition to the current policies. However, the intention has often been to support current policies – that is, the ideals underlying them, and to point out inadequacies in their implementation. The fact that much of this research tends to be critical does not mean that the reformer’s perspective has been abandoned. Here are at least two reasons why: firstly, this critical research appears more or less like commissioned criticism and, as such, an illustration of modern governments’ ability to incorporate critical voices; to incorporate critical social science. The confrontation between ideals and realities has developed into a means of governance – the planning and organisation of society and social services. In fact, the identification of problems and ideal–reality gaps has today become a part of social engineering. Secondly, the research focus on and employment of prevailing political ideals does to a large extent mean that: (1) the reformer’s agenda is taken for granted and not questioned/analysed as a research problem in itself, and (2) the ideals of the reformer are not simply taken for granted but are supported in practice. This may not be a conscious choice but comes about due to the fact that when a programme is criticised for failing 26



to fulfil certain ends, this is usually interpreted as: “the problem is the implementation, not the ends”. If a school is criticised for not implementing a real inclusion policy, this will be interpreted as “the inclusion policy is worth implementing”. A large number of studies have been carried out within this research tradition. They range from the purely descriptive to the analytical, from the uncritical to the over-critical and from evaluations of isolated programme amendments to the study of widereaching reforms. Thematically, it may seem like a tapestry. However, a substantial proportion of the research has addressed the larger reform movements, and in the Nordic countries during the 1970s, 80s and early 90s, deinstitutionalisation, normalisation and integration/inclusion stood out as the major issues. This also means that focus was directed towards groups and services that had earlier been segregated, typical examples being special needs education and services/institutions for intellectually disabled people.

Normalisation, integration and deinstitutionalisation Many people, in the Nordic countries as well as internationally, have pointed out that research on normalisation, integration and deinstitutionalisation can be grouped into two major classes; research investigating the effects on disabled people and research investigating whether new policies have really been implemented (cf. Gustavsson & Söder, 1990; Haug, 2004). Both classes are directly linked to ongoing reforms and also to the critique of institutions and segregation. The prototypical effects research has addressed adaptive and also challenging behaviour. It asks whether integration implies that people learn more adaptive and exhibit less “strange” behaviour. This research can be seen as a response to one important criticism of institutions and segregated schooling, internationally as well as in the Nordic countries. This was the criticism of the custodial institution; the institution where people were kept and where opportunities for learning and development according to prevailing standards outside the facility were small. These institutions were character© The authors and Studentlitteratur

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ised by a passive lifestyle and few normal stimuli. In short, the criticism was that people learned little of use and much that was maladaptive; thus, the logical evaluation question was: when people moved to an integrated setting, did they learn more? Did their maladaptive behaviour decrease? In effects research, integration is seen as a means, the goal is something else. Integration is supposed to facilitate learning, for example. If people learn more, integration is a success, if not, it is a failure. In implementation research, on the other hand, integration is a goal in itself. The question is then whether integration, normalisation and deinstitutionalisation really have been accomplished according to the ideals. This can be seen as a response to another type of criticism of institutions and segregated schools. This criticism was partly that these facilities provided appalling living conditions, but also that the facilities were seen as stigmatising. A society calling itself a welfare state cannot deliberately organise services for at-risk people that are both stigmatising and also provide unacceptable living conditions. Thus, the facilities were in conflict with egalitarian ideals and the basic democratic principle that society is for everyone. From this perspective, the logical evaluative question is whether the new services really do match up to the ideals or whether segregation, institution-like lifestyles and unsatisfactory living conditions have been reproduced in a new form. Within this broad international picture there are a couple of specifically Nordic traits. Firstly, whereas effects research is dominant on the international scene, implementation studies are more common in the Nordic countries. Typical studies of the dismantling of institutions for intellectually disabled people in Norway and Sweden in the 1990s addressed changes in people’s living conditions – housing, occupation, social networks, and so on – asking questions about standards of living as well as integration and normalisation (Tideman & Tøssebro, 2002). There have been a couple of effects studies, such as Saloviita’s longitudinal study of the closure of an institution (2002), but compared to what is typical in English-language literature, they are few and far between, and most are concerned with schools and carried out by special educators. Secondly, few of the studies addressing effects give any specific priority to adaptive or maladaptive behaviour. The “target” variable may equally well be self-image, friendships, family contact or participa28



tion in community life, etc. Some effect variables actually overlap with implementation research, such as participation in community life. The dominant profile of implementation research has much in common with the prototypical style of applied welfare research outlined in the previous section: it is concerned with ideals and reality, identifying gaps and pointing out areas where “something needs to be done”. And within this type of research model, the overall conclusion is more or less a given: “Although reforms have led to significant improvements, much remains to be done.” However, if you leave the bird’s eye perspective and look at the details, the results are not necessarily that obvious. However, we cannot go into detail here.

Recent trends in Nordic disability research The second half of the 1990s saw new trends emerging in Nordic disability research. This change has several aspects. Although normalisation, integration and deinstitutionalisation continue to be important themes, they are no longer the issues. A broader range of themes is being addressed and research on intellectual disabilities no longer dominates the scene. In this respect it seems rather symbolic that the earlier FUN1 (Association for Research on Intellectual Disabilities in the Nordic Countries) dissolved itself in 1997 and established NNDR – the Nordic Network on Disability Research. The NNDR is a research network addressing all types of disabilities, with a cross-disciplinary and broadly defined social-science profile. The establishment of NNDR is also indicative of the fact that disability research in the Nordic countries has reached a new level of institutionalisation. This is not only because the new network is better organised and larger than the earlier one, but also because people from the disability research community have achieved positions within universities and academic life. In Sweden and Iceland, professors have been appointed with specific responsibility for disability studies in sociology, pedagogy, psychology and social work. This is not the case in the other Nordic countries, but the reality is 1

Foreningen Forskning om Utvecklingsstörning i Norden.


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nevertheless not very different – people from the disability-research community have gained positions within the academic establishment. Much research is now carried out as doctorate studies. The national research councils have also become more involved, for instance in Norway where programmes have funded disability research since 1994. In addition, the research councils in Norway and Sweden fund the NNDR’s scientific journal, the Scandinavian Journal of Disability Research, SJDR (published since 1999). In many respects, the articles published in SJDR reflect the current state of Nordic disability research. Firstly, of the 62 articles published since its launch in 1999, a large majority has addressed disability in general. Sampling has been based on age or type of service rather than type of impairment. Among the articles addressing a specific impairment, intellectual disabilities continue to be the most common (12 articles) but studies of all types of specific impairments are represented. Secondly, the cross-disciplinary character of the research field is evident. Many articles are co-written by people with different professional backgrounds and with a crossdisciplinary profile. Among academic disciplines there are contributions from sociology, education/special education, psychology, social work, history, political science, public health and more. Thirdly, with regard to research design, articles can be grouped into three equally large categories – articles using qualitative methodology, articles using a quantitative design and articles that are of a theoretical nature or conduct an analysis based on a review of a number of empirical studies. Fourthly, the position of Sweden as the country with the longest and strongest tradition prevails. About 40% of the articles are written by Swedish contributors. Alongside these changes, the tradition of welfare-state-related research is complemented by a variety of approaches. It is not easy to classify these into a few groups, at least not yet, but examples would be studies of new patterns of social life (Ringsby Jansson, 2002), cultural representations (Sætersdal, 1993; Palmblad, 2002) or activities (Ineland, 2004), deconstruction of social reforms (Andersen, 2003; Sandvin, 1996), construction and reconstruction of identity (Barron, 2002; Gustavsson, 2000a), disability discourses (Solvang, 2000), interaction between children with and without disabilities (Ytterhus, 2002) and more. In this new variety of approaches, theory plays a much more significant role than before. 30



One should, however, also note that in Denmark, a country with a weaker tradition of disability research and more focus on projects of a practical nature, it is possible to see a merger of service-development projects and research into a kind of action research – though still with the emphasis on action rather than research (see Bengtsson, Bonfils & Olsen, 2003). This probably explains why there are few Danish contributions to the SJDR.

Gender studies One development in Nordic disability research that we would like to emphasise is the increasing influence of feminist or gender perspectives. Feminist research and disability scholarship in the Nordic countries each have their own history and traditions. (For an English-language collection of Nordic feminist scholarship, see Fehr, Rosenbeck & Jónasdóttir, 1998). These two fields of study have had a parallel and mostly separate existence, although both draw on analysis characterised by their attention to power relations, social exclusion, oppression and other issues related to marginalisation. Combining these two fields of study is relatively new in Nordic scholarship but has already produced a significant body of literature. Most of this writing has explored disabled women’s lives and experiences, and some of the writers are disabled women themselves (Barron, 2004; Olsson & Lundborg, 2002; Traustadóttir & Johnson, 2000). This literature consists of scholarly books and papers, often based on personal accounts and sometimes including poems and fictional writings. Some of the literature has focused on specific areas such as motherhood and family life (Sigurjónsdóttir & Traustadóttir, 2000), education and schooling (Lehtomäki, 2004; Fylling, 2000), friendship (Bjarnason, 2004) and violence (Kristiansen, 2004; Vimerö, 2004), to name a few. Most of this scholarship has focused on women. Exploring gender in relation to disabled men has attracted less attention, but there are nevertheless examples. Nordic feminist disability researchers have, like their international counterparts, pointed out the importance of feminist ideas for disability theory, research and politics (Barron, 2004; Kristiansen & Traustadóttir, 2004). Feminists have theorised and writ© The authors and Studentlitteratur

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ten about many of the issues currently debated in disability studies since the beginning of feminist scholarship in the middle of the 20th century. One central example is the distinction and relationship between sex (the biological) and gender (the social/cultural), which parallels in many ways the debates in disability scholarship on the separation between impairment and disability. Similarly, both fields are characterised by critical analysis of key concepts such as “woman” and “disability” which continue to be debated, challenged and reformulated. The increasing emphasis on gender perspective in Nordic disability research has inspired new insights in disability studies. Disability and feminist scholarship are both multidisciplinary fields of study, and both employ a wide variety of methods and theoretical approaches. Combining these two fields has brought a new and exciting dimension to Nordic disability research and has yielded important advances in scholarship and political action, as well as furthering understanding of people’s everyday lives and how they are affected by both gender and disability.

Understanding disability: recent theoretical developments In Nordic, as well as international literature on disability, three basic perspectives on disability appear to coexist (see Gustavsson, 2004). Two of them seem to be founded on specific ideas about what disability really is. The first perspective starts from the assumption that disability is an individual characteristic (a deviance), whereas the second perspective assumes that contextual influence (barriers/oppression) creates disability. According to the third perspective, disability is a social construct based on complex interactions between individual and societal factors. This perspective is often referred to as constructionist, postmodernist or poststructuralist. Here, disability is not understood as something caused or created by individual dysfunctioning or by barriers/oppressive social structures but as the result of a social, linguistic, discursive or cultural construction. At least two main lines of development can be identified within the constructionist theoretical perspective: one linguistic and one cultural. 32



In exploring these three basic perspectives we can draw on Söder’s analysis of Norwegian special educational research (1999). He argued that the two first perspectives are basically essentialist: individual essentialism and contextual essentialism, the first linked to “the clinical model” and the second to “the social model”. The third perspective he linked to the existing Nordic political understanding of disability: One way of phrasing this is to say that these projects [adopting the relativistic perspective] take the relative definition of disability seriously. It is impossible to understand the processes producing disability – and consequently exclusion and discrimination – without studying the interaction between the individuals and the context. In order to understand this interaction it is necessary not to lock oneself into the idea that certain individuals have certain shortcomings or problems and that these problems are to be the focus, or that one can decide beforehand that the context has certain characteristics. Such projects demand a certain openness towards what is going on; a sort of respectful approach to a reality where competent and reflective people act and shape the order we want to study (Söder, 1999, p. 33, our translation).

This understanding of disability, stressing the complex and situated interaction between individual factors and the environment, is sometimes called the relative definition of disability, but also the relational model or simply environmentalist model. The point is not the term but the idea behind the specific perspective – and the idea is that the social construction of disability takes place both in the relationship between the individual and the environment and in the relations between different individuals. Thus, the relational definition would be our preferred term for the rest of this introductory chapter. The relational definition was introduced to the Nordic countries in the 1960s and 70s as an alternative to the traditional, more individual essentialist notions of disability. The introduction was linked to policy development rather than social science and never really replaced the individual essentialist approach. It could be argued that in current Nordic disability research the majority of studies are not in fact carried out according to the relational perspective, although a large number pay “lip-service” to the concept. That is, most researchers tend in principle to favour a relational approach but in reality the research design is guided by the individual-essen© The authors and Studentlitteratur

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tialist model. However, all three basic perspectives do coexist in current Nordic disability research, but due to the “in principle” support and strong roots in the Nordic countries, it is the theoretical developments of the relational approach that are of relevance in our context. It is also the only approach where one can speak of specific Nordic developments.

Five variations of the relational perspective Although a version of the relational definition of disability has long been the officially supported approach in disability research and policy, it is only recently that this perspective has been elaborated into more articulate theoretical approaches. In a research review, Gustavsson (2004) identified five developments or variations within this perspective. The first two seem to share a basic realist assumption about the phenomenon of disability, whereas the last three are more constructionist. But all of them emphasise that disability must be understood against the background of a relationship between individual and contextual factors. The first approach links in with the World Health Organisation’s former International Classification of Impairments, Disabilities and Handicaps (ICIDH) (WHO, 1980). The basic idea here is that disability can be understood and explained on the three analytical levels: as impairment, disability and handicap, and the analyses often focus on conditions that turn impairment or a disability into a handicap (disadvantage) for a specific person. After the introduction of the new International Classification of Functioning, Disability and Health (WHO, 2001), similar types of analyses tend to be carried out in terms of the new key concepts: body structure, activity, participation and environmental factors. Typical Nordic examples of this approach have been published by Björck-Åkesson and Granlund (2004) and Loeb and Eide (2004). A second version of the relational model has recently been outlined by Danermark (2001) in terms of critical realism. Danermark’s project is to articulate a programme for disability research as an interdisciplinary science based on an environmentalist definition of disability/handicap. His approach is strongly influenced by the methodological programme of critical realism as it has been pre34



sented by Bhaskar (1978) and Archer (1995). In the critical realist approach, interaction between, for example, individual and social phenomena is understood in terms of an interaction between different strata of reality. Danermark describes a hierarchy of strata on four different levels: the societal (social), the psychological, the biological and the molecular level. Each level has its own mechanisms and works on its own premises. As a consequence, each level must develop its own methodologies and theories. However, critical realism also provides a kind of meta-theory that is supposed to facilitate integration of knowledge from different levels and disciplines. Empirical findings on each level are explained in relation to an underlying reality, first of all described in terms of mechanisms. Lower levels influence higher levels but critical realism distinguishes between the production and the influence of a specific mechanism. Bodily dysfunctions, for example, produce impairments but influence disabilities. A certain brain dysfunction, Danermark argues (2001), constitutes the necessary conditions for the disability we today call dyslexia. But dyslexia can only exist in a society based on reading and writing. In this sense, Gutenberg can be said to have invented not only the art of printing but also dyslexia. However, this does not mean that dyslexia is merely a social construction. Both the brain dysfunction and the characteristics of our society constitute necessary conditions for the phenomenon we call dyslexia. To some extent, Danermark’s theoretical approach can be understood as a critique of radical constructionist positions, arguing that disability is not just a social construction. Drawing on Lupton (1998), Danermark argues for a weak social constructionism; that is: “there is a reality independent of ourselves, influencing the phenomena we seek to analyse by interdisciplinary means” (Danermark, 2001, p. 294, our translation). A third elaboration of the relational model has been discussed mainly in special education and is based on the distinction between what are called categorical and relational perspectives. Most explicitly, this distinction has been articulated by Clark, Dyson and Millwark (1998) in Britain, and by Persson (2001) and Haug (1998) in the Nordic countries. The categorical perspective takes as its point of departure the idea of a need to differentiate deviant individuals from people who are regarded as normal. This taken-for-granted © The authors and Studentlitteratur

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need for categorisation – often expressed in medical or psychological terms – is the starting point for special treatments of different kinds. In the context of special education, pupils were earlier removed from regular classes and put in special schools or other kinds of special settings. Haug (1998) has called the ideas emerging from this perspective “segregating integration”; that is, education in a segregated setting aimed at future integration. In contrast to this, the relational perspective emphasises that the “problems” are produced in the relationship between the individual’s difficulties and the environment’s demands and support. Instead of simply categorising pupils with difficulties, the relational perspective understands pupils in special education as pupils in difficulties, pointing, for instance, to the fact that schools can also have problems in realising the goal of a school for all. Within this perspective, one tends to argue for integrated/inclusive school provisions. Researchers adopting the relational perspective emphasise various types of relations in understanding disability. Some stress organisational relations within the school system (Skrtic, 1991; Persson, 2001), others stress the relations between the individual’s disposition and environmental demands (Fischbein, 1997) or the relations between different paradigms or discourses concerning disability (Skidmore, 1999; Persson, 2001). This relational perspective has obvious similarities with the Nordic relational notion of disability. It is also explicitly constructionist in its critique of the absolute foundations for categorising deviance and normality. A fourth approach is the constructionist perspective presented by Michailakis (2002). Drawing on Luhmann’s (1995) phenomenological systems theory and, more specifically, on the theory of observation, he argues that disability is observed differently from the perspectives of different systems. Observation theory distinguishes between biological systems, psychic systems and social systems. Thus, both observation theorists and critical realists emphasise that a phenomenon like disability is differently understood from different perspectives, but an important difference between them seems to be that observation theorists understand the reality of disability as inaccessible for research. Reality in itself is not denied but can only be observed from a specific systems perspective. Thus, the difference between a medical and an economic perspective is not 36



understood against the background of a stratification of reality itself but of the fact that they are based on observations of different social systems. In order to understand specific distinctions and meanings, one must identify the system where these meanings and distinctions are used. From a medical (systems) perspective, disability is observed as disease, defects, malfunctions, impairments or the object of treatment. From an economic perspective, disability is rather seen as a lack of economic resources or as poverty, and from an arts perspective disability is seen as ugliness or a defective body, perhaps also as a means to challenge prevailing aesthetic ideals. The fifth approach, critical interpretation, has similarities both with systems theory and critical realism. Like critical realism, critical interpretation seeks an integration of knowledge from different analytical levels. Here, the key to this integration is the interpretation of what phenomena and processes on different levels mean from an insider’s and/or an outsider’s position (Gustavsson, 2001). In line with systems theory, critical interpretation does not accept the idea of an integrative meta-theory of disability. Interpretation of meaning is always from a human-science perspective and can never do full justice, for instance, to molecular or biological findings. However, this does not mean that such findings have to be neglected. Their meanings can be included in an analysis together with the meanings of other aspects of disability. In most critical interpretative studies, the interpretative strategy is more or less implicit. However, the typical methodological procedure used is to combine analyses of both individual and social aspects of disability and to present the results of these analyses in terms of more comprehensive interpretations. In this way the interaction between, for example, individual and social circumstances can be investigated and the relative importance of such circumstances in a specific case can be determined. The underlying methodological logic of this approach is often expressed in terms of the theory of interpretation and meaning. Findings are, for example, very often articulated as metaphors. The interpretative approach is critical in the sense that it critically validates all conflicting interpretations of the studied aspects of disability (including the insiders’ interpretations of people concerned) according to canons developed within hermeneutics (Hirsch, 1967; Ödman, 1979; Gustavsson, 2000b; Gustavsson, 2001). © The authors and Studentlitteratur

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The state of current Nordic disability research What can we say about the state of Nordic disability research against the background of this introduction? One interesting question is what the theoretical development has really meant to the field of disability research. To some extent this development seems to have been necessary and a prerequisite for the survival of the field in the long run. However, we would also like to point out a rather unexpected problem that has emerged in association with the new theoretical sensitivity. In line with current policies and guidelines for Nordic research, we understand disability from a relational perspective, in the sense that it is impossible to understand disability without studying the interactions between the individuals and the context. This understanding is based first and foremost on empirical observations. Thus, the relational perspective on disability demands both theoretical and empirical sensitivity. As Söder (1999) has pointed out, essentialist theoretical perspectives run the risk of becoming a strait-jacket for the disability researcher because they disregard important parts of the phenomenon being studied: As we have seen, the different projects realise both the clinical and the contextual perspectives. In both cases – one could say – for better and for worse. Sometimes individual essentialism becomes a straitjacket that makes it difficult to discover the social mechanisms that produce the problems of pupils (…) the perspective of contextual essentialism can sometimes end up in an almost circular reasoning, where the researcher only confirms his or her points of departure, when working from his or her own perspective (Söder, 199, p. 32, our translation).

Thus, the drive for more theoretical sensitivity in recent disability research may increase the risk of reduced empirical sensitivity and, as a consequence, a narrower understanding of disability. Instead of becoming a springboard for in-depth investigation and critical analysis, theory may blindfold the researcher in a new way. As pointed out by a number of disability researchers, these dangers are also present in constructionist perspectives. Researchers locating the construction, for example, in cultural processes tend to disregard social structures and other factors.

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The challenge for disability research in the years to come seems to be to find a way of combining the development of both theoretical and empirical sensitivity. In this respect, the relational approach seems to offer interesting opportunities. Versions of this analytical perspective are guided by an explicit multi-level approach and a special interest in exploring the interaction between different aspects of disability. However, examples of such approaches are still rare and need to be elaborated. Nordic researchers here have a special responsibility, building on the long tradition of the relational definition of disability.

References Andersen, J. (2003). Personal assistance as a strategic game between state and municipalities in Norway. Scandinavian Journal of Disability Research, 5: 140–150. Archer, M. (1995). Realist social theory: the morphogenetic approach. Cambridge: Cambridge University Press. Barron, K. (2002). Who am I? Women with learning difficulties (re)constructing their self-identity. Scandinavian Journal of Disability Research 4: 58–79. Barron, K. (Ed.) (2004). Genus och funktionshinder [Gender and disability]. Lund: Studentlitteratur. Bengtsson, S., Bonfils, I. & Olsen, L. (Eds) (2003). Handicap, kvalitetsudvikling og brugerindragelse [Disability, quality development and user participation]. Copenhagen: AKF-forlaget. Bhaskar R. (1978). A realist theory of science. Hassocks: Harvester Press. Bjarnason, D. (2004). ‘Just friends’: a study of friendships among disabled young adults. In: Kristiansen, K. and Traustadóttir, R. (Eds). Gender and disability research in the Nordic countries. Lund: Studentlitteratur. Björck-Åkesson, E. & Granlund, M. (2004). Early intervention in Sweden: a developmental systems perspective. In: Guralnick, M.J. (Ed.). A developmental systems approach to early intervention: national and international perspectives. Baltimore: Paul H. Brookes.


39


Bogdan, R.C. & Taylor, S.J. (1987). Towards a sociology of acceptance: the other side of the study of deviance. Social Policy 18: 34– 39. Clark, C., Dyson, A. & Millwark, A. (1998). Theorizing special education. London: Routledge. Danermark B. (2001). Tvärvetenskapens förutsättningar och dynamic – exemplet handikappforskning [The dynamics of crossdisciplinary research – the example of disability research]. Socialvetenskaplig tidskrift 8: 288–305. Fehr, von der D., Rosenbeck, B. & Jónasdóttir, A.G. (Eds) (1998). Is there a Nordic feminism? Nordic feminist thought on culture and society. London: UCL Press. Fischbein, S. (1997). Special educational research – and international, interdisciplinary perspective. Report 1997:1 from the Stockholm Institute of Education. Fylling, I. (2000). Kjønnsforskjeller i spesialundervisningen: Hvordan arter de seg og hvordan kan de forstås? [Gender differences in special education: how do they occur and how can they be understood?] In: Imsen, G. (Ed.). Kjønn og likestilling i grunnskolen [Gender and equality in compulsory schools]. Oslo: Gyldendal Akademisk. Gustavsson, A. (2000a). Inifrån utanförskapet [Insiders’ perspectives on being an outsider]. Lund: Studentlitteratur. Gustavsson, A. (2000b). Tolkningsteori II [Theory of interpretation II]. Stockholm: Stockholms universitet, Texter om forskningsmetod no. 5. Pedagogiska institutionen. Gustavsson, A. (2001). Studying personal experiences of disability: What happened to verstehen when Einfühlung disappeared. Scandinavian Journal of Disability Research 2: 29–41. Gustavsson, A. (2004). The role of theory in disability research – springboard or strait jacket? Scandinavian Journal of Disability Research 6: 55–70. Gustavsson, A. & Söder, M. (1990). Social forskning om människor med utvecklingsstörning [Social research on people with intellectual disabilities]. Stockholm: Report from the Stockholm College of Health and Caring Sciences 1990:1. Haug, P. (1998). Pedagogiskt dilemma: Specialundervisning [Pedagogical dilemma: special education]. Stockholm: Skolverket.

40



Haug, P. (1999). Forskning om spesialundervisninga si historie [Research on the history of special education]. In: Haug, P., Tøssebro, J. & Dalen, M. (Eds). Den mangfoldige spesialundervisninga [The variety of special education]. Oslo: Universitetsforlaget, pp. 72–89. Haug, P. (2004). Hva forskning forteller om integrering og inkludering i skolen [Research on school integration and inclusion]. In: Tøssebro, J. (Ed.). Integrering och inkludering [Integration and inclusion]. Lund: Studentlitteratur, pp. 169–198. Hirsch, E.D. (1967). Validity in interpretation. Yale: Yale University Press. Ineland, J. (2004). Disability, culture and normative environments. Scandinavian Journal of Disability Research 6: 131–150. Kristiansen, K. (2004). Erfarenheter från arbete med kvinnor i ‘mentalvårdslandet’ [Learning together with women in ‘mental health land’]. In: Barron, K. (Ed.). Genus och funktionshinder [Gender and disability]. Lund: Studentlitteratur. Kristiansen, K. & Traustadóttir, R. (Eds) (2004). Gender and disability research in the Nordic countries. Lund: Studentlitteratur. Lehtomäki, E. (2004). Education and employment: gender differences among people deaf or hard-of-hearing from childhood. In: Kristiansen, K. & Traustadóttir, R. (Eds). Gender and disability research in the Nordic countries. Lund: Studentlitteratur. Loeb, M. & Eide, A. (2004). Exploring living conditions among people with disabilities in southern areas of Africa. In: Tøssebro, J. & Kittelsaa, A. (Eds). Exploring the living conditions of disabled people. Lund: Studentlitteratur, pp. 65–86. Luhmann, N. (1995). Social systems. Stanford: CA, Stanford University Press. Lupton, D. (1998). The emotional self. London: SAGE Publications. Løchen, Y. (1965). Idealer og realiteter i psykiatriske sykehus [Ideals and realities in psychiatric hospitals]. Oslo: Universitetsforlaget. Martinussen, W. (1998). Forskning eller utredning. Institusjonalisering av den norske velferdsforskningen [Social research or social reports. The institutionalisation of Norwegian welfare research]. Tidsskrift for velferdsforskning 1: 168–177. Michailakis, D. (2002). The systems theory concept of disability: one is not born a disabled person, one is observed to be one. Disability & Society 18: 209–299. © The authors and Studentlitteratur

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Olsson, P. & Lundborg, A. (Eds) (2002). Och sen skal man vara glad också: Kvinnor med funktionshinder berättar [And then you are also expected to be happy: women with disabilities talking]. Stockholm: CKM/Liv i Sverige/Forum. Palmblad, E. (2002). Normality, confession and identity. Scandinavian Journal of Disability Research 4: 95–117. Persson, B. (2001). Elevers olikheter och specialpedagogisk kunskap [Pupils’ differences and special educational knowledge]. Stockholm: Liber. Ringsby Jansson, B. (2002). Vardagslivets arenor [Arenas of everyday life]. Gothenburg: University of Gothenburg. Saloviita, T. (2002). The closure of Nastola Care Home. Scandinavian Journal of Disability Research 4: 138–155. Sandvin, J. T. (1996). Velferdsstatens vendepunkt [The turning point of the welfare state]. Bodø: Nordlandsforskning. Shakespeare, T. (2004). Social models of disability and other life strategies. Scandinavian Journal of Disability Research 6: 8–21. Sigurjónsdóttir, H.B. & Traustadóttir, R. (2000). Motherhood, community and family life. In: Traustadóttir, R. & Johnson, K. (Eds). Women with intellectual disabilities: finding a place in the world. London: Jessica Kingsley. Skidmore, D. (1999). Relationships between contrasting discourses of learning difficulty. European Journal of Special Needs Education 14: 12–20. Skrtic, T. (1991). Behind special education: a critical analysis of professional culture and school organization. Denver: Love. Slagstad, R. (1998). De nasjonale strategier [National strategists]. Oslo: Pax. Solvang, P. (2000). The emergence of an us and them discourse in disability theory. Scandinavian Journal of Disability Research 2: 3– 20. Swain, J. & French, S. (2000). Towards an affirmative model of disability. Disability & Society 15: 569–582. Sætersdal, B. (1993). I skjønnlitteraturens speil – den utviklingshemmde og hans familie [The intellectually disabled and his family – in the image/mirror of fiction]. In: Gjærum, B. (Ed.). Kunnskap og ettertanke – psykisk utviklingshemming som flerfaglig utfordring [Reflections on intellectual disability as a cross-disciplinary task]. Oslo: Universitetsforlaget, pp. 21–38. 42



Söder, M. (1979). Skolintegrering av utvecklingsstörda – en begreppsanalys, forskning och forskningsbehov [School integration of intellectually disabled pupils, concept analysis, research and research agenda]. In: Forsknings- och utvecklingsarbete om integration av handikappade elever i det allmänna skolväsendet [Research and developmental work concerning the integration of disabled pupils in regular schools]. Stockholm: Report from Skolverket [the National Board of Schools]. Söder, M. (1981). Vårdorganisation, vårdideologi och integrering [Service organisation, service ideology and integration]. PhD dissertation. Department of Sociology, Uppsala University. Söder, M. (1995). Var står forskningen i dag? Om den sociala handikapforskningens möjligheter och begränsningar [The state of the art. On the possibilities and limitations of social research on disability]. Socialmedisinsk tidsskrift 72: 231–237. Söder M. (1999). Specialpedagogisk forskning mellan det kliniska och det kontextuella [Special education research: between the clinical and the contextual perspectives]. Bodø: Nordlandsforskning, NF 8/99. Tideman, M. & Tøssebro, J. (2002). A comparison of living conditions of intellectually disabled people in Norway and Sweden. Scandinavian Journal of Disability Research 4: 23–42. Traustadóttir, R. & Johnson, K. (Eds) (2000). Women with intellectual disabilities: finding a place in the world. London: Jessica Kingsley. Tøssebro, J. (2001). Forskningens bidrag til praksis: Noen refleksjoner rundt problemorientert forskning [Research and practice: reflections on research on social problems] In: Sandbæk, M. (Ed.). Fra mottaker til aktør [From welfare recipient to social actor]. Oslo: Gydendal akademisk, pp. 263–281. Vimerö, V. (2004). Violence against disabled women. In: Kristiansen, K. & Traustadóttir, R. (Eds). Gender and disability research in the Nordic countries. Lund: Studentlitteratur. WHO – World Health Organisation (1980). International classification of impairments, disabilities and handicaps (ICIDH). Geneva: World Health Organisation. WHO – World Health Organisation (2001). International classification of functioning, disability and health (ICF). Geneva: World Health Organisation.


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Ytterhus, B. (2002). Sosialt samvær mellom barn [Social interaction among children]. Oslo: Abstrakt forlag. Ödman, P.-J. (1979). Tolkning, förståelse, vetenade [Interpretation, understanding and knowledge]. Stockholm: Norstedts.

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I

I Policies and Practices


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1 Paradigms of disability services in Finland

1 Paradigms of disability services in Finland Timo Saloviita Three paradigms of disability services will be presented, and the birth and development of each paradigm will be followed in Finland. These paradigms are institutional care, rehabilitation and support. They are connected to the economic development of the country and correspond to the industrial and post-industrial phases of society. It will be shown that an important division within the disability field has occurred between those with physical disabilities and those with mental disabilities. Both groups have progressed or are progressing through the three paradigms but within different time frames.

If we compare the ways in which disability services have been arranged at different times we can obtain an understanding of how disabling conditions have been perceived and interpreted over the course of history. A historical comparison of disability services reveals both periods of smooth development and also periods of change. Changes in the conceptualisation of disability are relatively rare and seem to be associated with economic changes in society as a whole. The divisions between agrarian, industrial and post-industrial society have their counterparts in the service models for people with disabilities. The traditional, agrarian society had its own varied forms of care. In Finland, the development of relief for the poor at the beginning of the 19th century was politically accepted in an 1852 statute on the care of the crippled (Karisto, Takala & Haapola, 1988). While this statute confirmed an undifferentiated system of care developed during the early 19th century, it recognised and listed a variety of crippling conditions which could entitle a person to receive outside help from his or her local municipality. The insane and mentally challenged were listed separately from those with physical disabilities. The main form of assistance for those in need of constant care was through a filing system in which a few accommodations, or “farmhouses”, were responsible for the care of a designated person, © The authors and Studentlitteratur

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a “cripple from the file”. The person could also be rotated between houses or sold by auction to a house offering the lowest bid for his or her maintenance for the upcoming year. This auction system, while obviously economically sound to start off with, developed into a source of debasement and humiliation for people in need. It attracted much public criticism and had the unfortunate important consequence of debasing reliance on foster care and giving the future implementation of institutional care more of a human face (Karisto et al., 1988). At the end of the 19th century, the disability-service system descended into a sort of financial crisis due to increasing costs. It was replaced through a new statute in 1879, which established a new service model obtained from England: a workhouse system. If a person wanted welfare relief, he had to go into a workhouse where he lost his freedom and was subjugated to hard work and strict discipline. The intention was to raise the threshold for asking for outside help and in this way lower the costs of welfare relief. The number of municipal workhouses in Finland rose to around two to three hundred facilities at the beginning of the 20th century. During this period, more and more people incapable of performing work were placed there. As a result, the names of the workhouses were changed to “Houses for the Crippled” and later to “Municipal Homes”. When a more specialised institutional system developed, these houses slowly changed into care homes, mainly intended for the elderly. At the present time they are referred to as “Homes for the Elderly”. Workhouses were the first form of institution, in the wider implementation of the service philosophy, which can be referred to as a paradigm for institutional care. The concept of institutional care was introduced as a cure for the rising expenses of early welfare relief. Proponents of institutional care later saw it as a cheaper alternative to other forms of service. Originally, it was seen as cost efficient because the mere threat of institutionalisation was thought to be a deterrent to asking for help. Besides being an economic solution, the institution was seen as a more humane alternative to the evils of the auction block and foster care that were motivated mostly by financial gain.

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Differentiation of disability services and the major division within the disability field Separate legislation for people with disabilities began to develop in the late 19th century. An important principle of classification was, at first, the source or origin of the impairment (Harjula, 1996). When disability originated as the result of an “honourable” cause, it was regarded as an appropriate basis for support. A work-related accident, for instance, was an honourable way to become disabled. Legislation on industrial-accident insurance brought about the concept of “invalidism” in the Finnish language. The term was borrowed from German social-welfare legislation of the 19th century (Stone, 1984). Another honourable source of disabilities was being wounded as a result of war heroism. Subsistence for disabled soldiers of the Finnish Civil War of 1917–1918 was secured through separate legislation. This legislation ensured that disabled veterans, who fought for the “Whites”, or the winning side, did not need to seek help from ordinary welfare assistance. After the Second World War, this legislation was widened to guarantee subsistence and rehabilitation for over one hundred thousand disabled soldiers (Ranta-Knuuttila, 1996). The development of legislation on the subsistence and rehabilitation of disabled war veterans led to a discrepancy between the benefits afforded to disabled veterans, on the one hand, and those allotted to disabled civilians, on the other. As a result, a law on the care of people with invalidism was enacted in 1946 (Harjula, 1996). There was a heated debate surrounding the question of who the disabled people were who would be entitled to receive the benefits afforded by this law. As a result of this discussion, the concept of “social acceptability” was introduced. A person was considered to be socially acceptable if he or she was an able-bodied member of society before the loss of the ability to work. On this basis, both disabled war veterans and disabled civilians opposed the widening of the concept of invalidism to include children with inborn developmental disorders. Through compromise, children with physical disabilities were finally accepted into the sphere of those eligible for benefits afforded by the law.


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In conjunction with the enactment of the Invalidism Law in 1946, the field of disabilities was divided into two large classes. On one side were the “socially acceptable” disabled, called invalids. They were entitled to the benefits of the Invalidism Law. Their disability was physical in character and originated either from an inborn physical disorder or from accident or disease in adulthood. They also had to be of working age or younger. On the other side were those disabled who were not “socially acceptable”. These were people with mental disabilities, either intellectually disabled or mentally ill. The foundational memorandum of the Invalidism Law was reticent about the reasons why this group was left out. It only referred to “reasons of expediency” without further explanation (Government Announcement, 62/1946). According to Harjula (1996), the Invalidism Law made a distinction that was not based on any objective division between those who would possibly be able to work in the future and those who would not. The division was made on the basis of cultural images of varying disabilities. On one side were the people with disabilities who were seen as full human beings. When a disability was physical, it was easy to make a distinction between a person and his or her disabling condition. On the other side were those whose humanity hung in the balance. Their disability was not about their bodies but their minds. Because their minds were disabled, their status as full human beings was questioned. Negative cultural images of people with mental disabilities were enhanced on the basis of eugenics theories and the eugenics movement of the late 19th century. This movement saw intellectual disability and mental illness as indices of the degeneration of the human race. The human race could be protected through the segregation and sterilisation of people with mental disabilities. Even the sterilisation law enacted in Finland in 1935 was not revoked until as late as 1970.

The growth of the institutional model for people with mental disability It seems that, internationally, constructing institutions for people with mental disabilities is associated with the industrialisation and urbanisation of individual countries. When family units move from 50



the country into towns, and people go to work in factories instead of working for the family farm, the ability of families to rear their disabled members is weakened. During the first part of the 20th century, Finland was an economy dominated by agriculture. Most people lived in the countryside. In this environment the tenets of the eugenics movement on the need to segregate mentally disabled people in institutions did not strike a chord. Institutions were not needed because mentally disabled family members did not prevent the mainly farming-based economy from functioning. Even if many Finnish professionals promoted the construction of institutions according to international models, the need for institutions was not seen among politicians. On the contrary, such plans would have been criticised as inhumane and expensive (Harjula, 1996, p. 150). This way of thinking altered when Finland began to change into an industrial society. An industrial society developed late in Finland by international standards, but the development was rapid. The customary view is that the change to an industrialised society began during the Second World War, in the 1940s (Karisto et al., 1988). During the 1960s the population working in industrial workplaces already superseded in number the population working in agriculture (Suomen Tilastollinen Vuosikirja, 1982). The government first became interested in constructing institutions during the 1940s. At that time the first committee reports on this topic were published. However, first the war and then economic hardships, including war indemnities, delayed the realisation of such plans. Nevertheless, legislation was finally ready in the 50s. In 1958, the Law on Mental Deficiency was enacted. It guaranteed generous state grants for the building and maintenance of institutions for people with mental deficiency. A similar law for people with mental illness was enacted in 1952. On the basis of these laws a network of mental institutions was built during the 60s and 70s. The original aim was to institutionalise 0.2% of the Finnish population into hospitals for people with mental deficiency. This aim was not achieved. The peak in intellectual disability services was attained in 1983 when the rate of institutionalisation was 0.12%, or 5,900 people (Saloviita, 1992). The rate was, however, higher than what was ever achieved in the US where the highest rate of institutionalisation, attained in the 60s, was 0.10% (Lakin, Bruininks & Sigford, 1981). © The authors and Studentlitteratur

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Governmental reports, which formulated legislation on institutional care, did not contain many arguments to justify this service model. For the most part, institutions were circularly justified on the basis of a need for institutional care. Institutions had become a matter of course and were not in need of any specific justification. A child-welfare committee in 1943 presented a few additional arguments for following the Danish centralised model, instead of the more decentralised Swedish model. It was argued that institutions should be large, as in Denmark, because this made it possible to classify residents into separate wards according to their diagnoses; it would also be cheaper to build a few larger institutions than many smaller ones (Komiteanmietintö, 1947).

The rehabilitation paradigm The industrial phase of Finnish society lasted a very short time. During the 1960s, Finnish society developed from an industrial to a post-industrial service society, as measured by the people employed in different forms of industry. This change was also characterised by an upheaval in cultural values. Traditional values were superseded by value pluralism. The ironic side of this development was that while the comprehensive building of an institution-based service system for deviant people had at last begun, society had changed so that these institutions were no longer really needed. Society had become more tolerant towards deviancy, and new ideas were beginning to emerge about the types of care needed for people with various mental disabilities. It was not easy, however, to stop the process that had begun. The construction of institutions continued until 1979, after which remaining construction plans were finally frozen. When millions of disabled soldiers returned home from the Second World War, it was understandable that a new definition of disabilities was needed. During the 50s, the International Labour Organisation of the United Nations (ILO) launched the concept of “rehabilitation” for disabled people. Disability was no longer seen as static but as a condition that could be improved through professional effort. The main idea was the return of disabled people into 52



the mainstream of society as full members and as part of the active work force through the process of rehabilitation. This idea was contained in the Finnish Law on Invalidism in 1946. However, during the 40s and 50s this emerging rehabilitation paradigm was reserved mainly for people with physical disabilities. It was not until the societal change from an industrial to a postindustrial society occurred that the idea of integrating people with mental disabilities into their communities was accepted. The turning point was the report of the rehabilitation committee published in 1966 (Komiteanmietintö, 1966). Soon after this, changes in legislation took place which guaranteed state grants for the development of open-care services for people with mental disabilities. These new services included the establishment of group homes, training schools, sheltered workshops, day-care centres, the provision of family-care subsidies and many other options. This legislation came into force in 1970. There was a clear cutting edge to the new service paradigm. According to the rehabilitation paradigm, there was to be a continuum of services from more restricted services to less restricted services until an ordinary community was at last achieved. A disabled person was put on this ladder in a proper step-by-step sequence. The service steps were ordered to rehabilitate the person. The care services were therefore entitled to remove an individual from society and place him or her on this ladder on the basis of this desired effect, i.e. rehabilitation. It was in the individual’s vested interest. The extension of the rehabilitation model to include people with mental disabilities was a big step forward in their lives. The number of children who were institutionalised began to drop immediately in 1970 after the first parts of the new legislation came into force. During the 70s, a new law on mental retardation was enacted which confirmed the new service model (Laki, 1977). Similar changes were made in the same year to the law on mental illness (change 521/1977). The rehabilitation paradigm was easy to adopt because it also included the institutions as the lowest step in the model. It simply interpreted the institutions in a new way. They were supposed to be no longer places of segregation but, rather, places of rehabilitation. The rehabilitation paradigm is currently the ruling philosophy of © The authors and Studentlitteratur

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disability services in Finland. However, during the 80s new developments began to occur which led to the emergence of a completely new service paradigm.

The support paradigm While the rehabilitation paradigm was mainly introduced by the ILO, the roots of the new support paradigm can be found in community-based rehabilitation model of the World Health Organisation, presented for the first time in 1978 in Alma Ata (Lysack & Kaufert, 1994). This model, originally planned for the conditions of developing countries, was based on the idea of helping disabled people in their own communities. The Western model of disability services, which was dominated by various professionals and based on the idea of moving people with disabilities into separate buildings to be served by staff, was not realistic in the context of developing countries. During the United Nations Decade of Disabled Persons (1983–1992) much work was done to develop a new understanding of disability services that would bring the rights of disabled people to the forefront in the spirit of “equality and full participation”. These rights included the right to be part of a local community and receive the necessary supports there in contrast to being removed to separate disability services. The closing document of the decade, “Standard Rules on the Equalization of Opportunities for Persons with Disabilities” (1993), presented these ideas in a concise form. The main idea of the new service paradigm was the right of every individual to belong to his or her own community instantly, without the need to first prepare for it through some rehabilitation process outside the community. This traditional form of service philosophy is often referred to as the “readiness model”. The primary focus of the services was no longer rehabilitation but human rights and equality for the person with disabilities. Taylor (1988) presented a thorough critique of the old rehabilitation model, which is known in US legislation as the “principle of the least restrictive environment” (Taylor, 1988). He argued that the consequence of the rehabilitation model was to justify institutions and other special environments that separated people with disabilities from ordi54



nary life. This was done in the name of their rehabilitation. Smull and Bellamy (1991) outlined five shifts which were part of the new paradigm: (1) shifting the view of disability from an emphasis on individual limitations to a focus on environmental constraints; (2) shifting the emphasis on the public role of providing community readiness programmes to guaranteeing access and providing support; (3) shifting from assessment and diagnosis to choice-based approaches; (4) shifting service location from separate programmes to integrated settings, and (5) shifting the service strategy from formal to informal supports. In Finland the new way of thinking about disability services entered the field through the Disability Service Act that was passed in 1987 (Act 759/1987) and came into force step-by-step between 1988 and 1994. The change in focus was evident in the first paragraph of the law where the attention was directed to environmental constraints which should be removed so that people with disabilities could become equal members of society. The new law brought with it many important new services, such as the right to acquire personal assistants, interpreters, independent housing with services, and transportation. The Disability Act superseded the old Invalidism Law. Unlike the Invalidism Law, the new law was written to be non-discriminatory. It covered, in principle, both people with physical disabilities and people with mental disabilities. In practice, however, people with mental disabilities have found it difficult to obtain services through this law. The continued existence of separate laws for these groups has made it easy to knock back their attempts to receive (better) services through the Disability Act. An important concept in the new service paradigm was the concept of “support”. Support should not be understood in the old way simply as any service the person with disabilities can receive. Instead, the concept of support is connected to the interests and causes of the individual. “Support” is identified with those resources and strategies that promote the chosen lifestyle of the individual. It is easy to see that the popular implementation of the concept of support in the Finnish disability field rarely follows this rule. On the contrary, new concepts in the support paradigm are typically interpreted within the context of the old paradigm. In this assimilation process, the value basis of the support paradigm is lost © The authors and Studentlitteratur

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and the new service forms, detached from their value base, are seen as just another model of service (Saloviita, 2000). The concepts of supported housing, supported education and supported employment are some derivatives of the support paradigm. While the Disability Act of 1987 provided a basis for developing services in this direction, the support model has, thus far, mainly been applied to people with physical disabilities. Both major disability groups have gone through the shifting phases of disability services but at different rates. Negative cultural images of people with mental disabilities have prevented them from benefiting from service reforms over the same time period as people with physical disabilities. Currently, all three service paradigms, institutional, rehabilitative, and support based, seem to exist side by side in Finland. However, the institutional model continues its existence only as a relic of the past, as the meaning of mental institutions has been reinterpreted from the perspective of the ruling rehabilitation paradigm. In the same way, there is a tendency to interpret the new support-based services as just another instance of the rehabilitation paradigm. Therefore, many aspects of the support paradigm, such as supported employment (Saloviita, 2000) or inclusive education, must fight for their independence against attempts to distort them from the position of the old scheme.

References Harjula, M. (1996). Vaillinaisuudella vaivatut. Vammaisuuden tulkinnat suomalaisessa huoltokeskustetelussa 1800-luvun lopulta 1930luvun lopulle [Inflicted with infirmity. Interpretations of disability in the Finnish professional and official debate from the late 19th century to the end of the 1930s]. Bibliotheca Historica 15. Helsinki, Suomen Historiallinen Seura. Karisto, A., Takala, P. & Haapola, I. (1988). Elintaso, elämäntapa, sosiaalipolitiikka – suomalaisen yhteiskunnan muutoksesta [Standard of living, way of life, social policy – about the changes in Finnish society]. Helsinki: WSOY. Komiteanmietintö (1947). Vajaakykyisten lasten huoltokomitean mietintö II [Report of the committee on the care of crippled children II]. Helsinki. 56



Komiteanmietintö (1966). Kuntoutuskomitean mietintö 1966: A 8 [Report of the committee on rehabilitation 1966]. Helsinki. Laki kehitysvammaisten erityishuollosta (519/1977) [Act on mental retardation]. Lakin, K.C., Bruininks, R.H. & Sigford, B.B. (1981). Introduction. In: Bruininks, R.H., Meyers, C.E., Sigford, B.B. & Lakin, K.C. (Eds). Deinstitutionalization and community adjustment of mentally retarded people. Monograph of the American Association on Mental Deficiency, No. 4. Washington, DC: American Association on Mental Deficiency, pp. 182–194. Lysack, C. & Kaufert, J. (1994). Comparing the origins and ideologies of the independent movement and community based rehabilitation. International Journal of Rehabilitation Research 17, 3: 231–240. Ranta-Knuuttila, J. (1996). Sotainvalidikysymys Suomessa [The question of the wounded in the war]. In: Nygård, T. & Tuunainen, K. (Eds). Avun kohteesta itsensä auttajiksi. Katsaus Suomen vammaishistoriaan. Jyväskylä: Atena, pp. 165–184. Saloviita, T. (1992). Takaisin yhteiskuntaan. Tutkimus kehitysvammaisten laitoshuollon purkamisesta [Back to the community. A study on the deinstitutionalisation of the hospitals for people with intellectual disabilities]. Tampere, Kehitysvammaisten Tukiliitto. Saloviita, T. (2000). Supported employment as a paradigm shift and a cause of legitimation crisis. Disablity & Society 15: 87–98. Smull, M.W. & Bellamy, G.T. (1991). Community services for adults with disabilities. Policy challenges in the emerging support paradigm. In: Meyer, L.H., Peck, C.A. & Brown, L. (Eds). Critical issues in the lives of people with severe disabilities. Baltimore: Paul H. Brookes, pp. 527–536. Stone, D.A. (1984). The disabled state. Philadelphia, Temple University Press. Suomen Tilastollinen Vuosikirja (1982). [Finnish Statistical Yearbook]. Helsinki: Valtion Painatuskeskus. Taylor, S.J. (1988). Caught in the continuum: a critical analysis of the principle of the least restrictive environment. The Journal of the Association for Persons with Severe Handicaps 13: 41–53.


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2 Gradual improvement or deterioration in disguise?

2 Gradual improvement or deterioration in disguise? Johans Tveit Sandvin and Willy Lichtwarck

Introduction Since defined as a specific category for attention in the mid 19th century, people with intellectual impairments have been subject to an ever-changing conceptualisation, perception and treatment, fronted by shifting professional groups. Every shift in perception and ideology has been pursued with the same enthusiasm and certainty, and soon made the old perspectives look anachronistic, disrespectful or inhumane. What characterises the perception of people with intellectual impairments today? Which goals or values are currently being pursued on behalf of people with intellectual impairments and which professional groups are regarded as being the most important contributors in pursuing these goals? These are some of the questions raised in this chapter. With reference to the following, and partly competing, discourses through which intellectual impairment has been historically produced, we want to discuss what characterises the perception of intellectual impairment that guides community services for people with intellectual impairments in Norway today. To do this, we will make use of two empirical sources. The most important source is focus-group interviews with service workers in two municipalities, carried out as part of a broader ongoing study of the conceptualisations and knowledge-use in services directed at people with intellectual impairments in Norway. The study is funded by the Norwegian Research Council. Accounts obtained from these interviews are compared with an observational study of Norwegian group homes for people with intellectual impairments that we carried out in 1995 and 1996, together with Mårten Söder and Tone Magnussen (Sandvin et al., 1998; Söder et al., 2001). This study was also funded by the Norwegian Research Council. © The authors and Studentlitteratur

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A retrospective glance In Norway, the pedagogues were the first profession committed to working specifically with people with intellectual impairments, although the interest was mainly limited to educational efforts, and thus to those regarded as educable. But it is important to bear in mind the important role that reason played in the early 19th century in allowing individuals to be accepted as human beings. Reason was considered a necessary prerequisite for humanity, which again was a prerequisite for becoming a Christian (see Koch, 1959, pp. 187–193). The idea of separate schools for people with intellectual impairments, which appeared in the mid 19th century, arose from the education of the deaf, which had started a few decades earlier. For both deaf people and people with intellectual impairments, education was from the beginning part of a humanising project (Froestad, 2000). The first Institute for the Deaf in Scandinavia was opened in Copenhagen in 1807. Deaf people were at this time seen as uncivilised barbarians (ibid.), with rather questionable intellectual potential. Hence, there was no clear division between deaf people and people with intellectual impairments. This distinction became more apparent within the schools, which eventually led to the need for a clearer differentiation and an interest among some teachers of the deaf in teaching intellectually impaired pupils separately. The primary aim of this education, in all of the Scandinavian countries, was to give pupils the theoretical and Christian understanding required for confirmation (Aas, 1954; Söder, 1978). Starting out as a humanisation project in the mid 19th century, the schools gradually became arenas for a more distinct humanistic perspective. By the end of the century the aim was not so much to make people human but to provide them with theoretical and, especially, practical skills to enable them to live independently and earn their living through their own work. To a certain extent they also succeeded in this aim (Sandvin, 1996). By the turn of the 20th century intellectual impairment had become subject to a growing interest from medicine, which would lead to power struggles between medical doctors and pedagogues in the years to come. The medical interests had both a scientific and a preventative motivation, and reflected a growing attention to 60



heredity research and theories of degeneration (Kirkebæk, 1993). Reflecting the writings of Morel and others, abnormalities were perceived as the degenerative effects of bad behaviour, such as drinking, sexual excess, and so on (Hansen, 1996), and thus also morally suspect. And since the “inferior” population was believed to have a much higher reproduction rate than the “valuable” part of the population (ibid.), the issue was also regarded as a serious threat to civilisation. To give people with intellectual impairments possibilities of education, work and independence was no longer a priority. Instead, people with intellectual impairments were seen as a hereditary threat to society that should be subject to sterilisation, confinement and control. All the Scandinavian countries enacted sterilisation legislation in the 1930s and most of the countries saw a strong development in residential institutions. In Norway the building of institutions started comparatively later than in other Scandinavian countries, presumably because the responsibility was placed with the Ministry of Church and Education. Only a few hundred beds had been established before the war, whereas Denmark and Sweden had several thousand each. After the Second World War, the medical perceptions of disability were heavily discredited, and the 1950s were characterised by a certain professional vacuum (Tøssebro, 1999). Still, it was quite a busy decade. A national plan was launched in 1952, which finally set the pace for institution building in Norway as well. By the end of the 1960s the number of beds had increased to more than 6,000. In the late 1960s residential institutions were subject to growing criticism throughout the Western world. Segregation and specialised measures were disputed and confronted by new ideological concepts such as normalisation and integration. After a period of restructuring and improvement of the institutional system, the Norwegian government decided in 1988 to close down all residential institutions for people with intellectual impairments. The closure was effected during the early 1990s and replaced by individual apartments and small group homes for two to four people, located in people’s home communities and served by the municipal social services.


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Changing discourses Thus, the history of intellectual impairment in Norway, not unlike that of other Western countries, can be described as a series of successive discourses through which not only the phenomenon itself was produced, but which also formed the various social practices that people with intellectual impairments became subject to. The 19th century was characterised by a humanisation discourse, later developed into a more optimistic humanistic discourse, in which pedagogues were the most prominent spokesmen. Throughout the first half of the 20th century, the issue was increasingly dominated by medicine and particularly by the eugenics discourse dominating medicine at the time. This discourse culminated during the Second World War and left behind a vacuum, which in Norway was filled by institution-building. From the 1960s onwards, a number of new and competing discourses appeared. New medical knowledge contributed to a more optimistic treatment discourse. Psychologists returning from studies in the USA brought with them a behavioural therapy discourse that became very influential in Norway, especially through the role it came to play in the education of “vernepleiere”, a bachelor-level semi-professional qualification, specially designed for working with people with intellectual impairments. Later, the vernepleie qualification was broadened to cover other populations, but vernepleiere have, since the qualification was established in the early 1960s, been the most important semi-professional group serving people with intellectual impairments. Finally, the period was characterised by a normalisation discourse, within which the increasing criticism of the institutions was formed. In contrast to the previous discourses, the normalisation discourse was not dominated by specific professional groups. It had its strongest foothold in the parent organisation, but was represented in almost all professional camps. During the 1970s and 80s there was a strong polarisation between the discourses of normalisation and discourses of behavioural treatment. It was the normalisation discourse that gained the strongest political legitimacy, partly as a result of a number of exposures of illegal use of aversive strategies in behavioural treatment. The decision in 1988 to close

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down all residential institutions was clearly anchored in a normalisation ideology. What, then, characterises the policy and services for people with intellectual impairments today, ten years after institutional closure? What are the prevailing discourses forming the perceptions of people with intellectual impairments today? Some of the discourses of the last few decades are still current, but they are far more mixed and diffuse than was the case in the 1970s and 80s. It could be argued that features and patterns are always more distinct when observed from a certain historical distance, but there is no doubt that changes have taken place that have diluted the distinctions between earlier positions. The treatment discourse has expanded, but has also become far more differentiated and specialised. We have a number of (cross-) professional communities, often located in specialised institutes or centres for specific diagnoses or conditions, dedicated to examination, treatment and research. The behavioural analysts still exist and have their annual conferences, but only very few would defend the prevailing views of the 1970s and 80s. Instead, many have incorporated a more ecological perspective on human behaviour, which was previously upheld by supporters of the normalisation discourse. The normalisation discourse has declined, and has been partly taken over by new spokespeople. In the 1960s and 70s the principle of normalisation represented the most progressive position (Nirje, 1969; Bank-Mikkelsen, 1969; Kristiansen, 1993; Söder, 2003). In the 1980s the principle was accepted as official policy. In the 1990s it represented the ideological foundation for the formation of new community services, but not without certain frustrations. The principle that was designed to expose the problems and impediments of the old system seemed to provide limited help with the formation of new services (Sandvin, 1992).


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Post-institutional practices Empirical focus In the mid 1990s we conducted, together with a group of colleagues, a field study in the new group homes that had become the prototype of new housing for people with intellectual impairments in Norway after the institutional closure. The theme that most strikingly captured what we saw as the essence of these group homes was “normalisation work”, which describes the work done by the staff in order to produce circumstances for residents that are as “normal” as possible (Söder et al., 2001). Normalisation was the overall stated goal but it was also a set of purposes embedded in everything ranging from the rules and regulations to the social and material structures of the group homes. But, at the same time, it represented a constant source of frustration and ambivalence. From our field notes we identified at least three sets of dilemmas expressed by staff: (1) dilemmas between normalisation and common sense; (2) dilemmas between individual privacy and collective activities, and (3) dilemmas between respect for people’s autonomy and the need for instruction and control (ibid.). Although applied with the best of intentions, the once-so-progressive principle of normalisation had turned into a technology, a set of ruling principles that in many places created rather repressive and disciplinarian regimes. In the current study, mentioned in the introduction, of the knowledge in use in present-day services, we have interviewed staff working in the same type of group home. This gives us the opportunity to compare the accounts given by service workers today with the accounts obtained through observations ten years ago. What we found striking was that none of the service workers we interviewed in the current study ever mentioned normalisation. Instead, many other ideological terms, values and expressions have appeared, such as independence, self-determination, flexibility and having a good life. These are terms that were not common ten years ago. It is difficult, and perhaps even too early, to say whether these values and expressions represent elements of a new and more general discourse. Some of the changes we have observed resemble processes described as more general features of social change, such as

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reflexivity and individualisation (Giddens, 1991), but to what extent they are related to such general features of broader social change is impossible to say at this stage. Here we will limit ourselves to pointing out a few striking features which contrast with what we found in the group-home study from 1996 (Sandvin et al., 1998).

Four characteristic features Relating interviews from the current ongoing study to the findings from the group-home study of the 1990s, we have identified at least four features of change. One such feature is the change from the group to individuals as the focus of attention. Normalisation work, which we revealed in the group-homes study, was not so much directed towards individuals. It would be more correct to say that it was directed towards the residents, not necessarily as a group but as generalised representatives of the target group. People were residents in the group home because they were regarded as unable to live a normal life without substantial assistance, and it was towards this generalised inability that the normalisation work was directed. Thus, the social organisation of the group home, with its spatial and sequential patterns and its formal and informal rules, applied to all residents, although individual exceptions were often made. Today the focus seems to have shifted from the group or the generalised user to a much stronger emphasis on the individual. Staff members explicitly express their dissatisfaction with the inflexibility that has prevailed, and they are deliberately trying to get rid of any lingering traces of the past. They talk about the necessity of knowing the preferences, habits and character of each person. They also talk about the importance of personal chemistry. Some relationships are better than others, and it is important to take this into account when deciding who should assist whom. Another feature, closely related to the previous one, is what we could call the shift from becoming to being. Normalisation work reflected a teleological ambition. It was something specific that should be accomplished. This is not nearly as clear today. Instead, the focus is now on how the individual feels, what she/he struggles with or what she/he longs for. The staff are no longer tormented by the question of what is normal in different situations as was the case in the mid 1990s. Instead, reflections and dilemmas revolve © The authors and Studentlitteratur

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around life itself, what a good life is and how to assist people to have a good life. A representative from the habilitation service, interviewed in connection with the same study, also reflects this shift. As a psychologist, he was trained as a behavioural therapist and he still argues that the therapy and the rigorous training of behavioural and communication skills did improve many people’s lives. The problem was that the programmes never ended and that they sometimes almost tore people apart. He says: “The mid 1990s was in many ways a defining time for me. I realised that what was important was that people should be allowed to live a life much more on their own terms. This is something that has become gradually better developed and understood since then.” A particular feature illustrating this shift, reflected in both of the group interviews, is the dilemmas staff experience in relation to issues such as death and grief, and the sadness that many of the people they care for feel about not having a family of their own, not having children or someone to be close to, and so on. The awareness of these questions indicates that the relations between staff and residents have grown closer than was the case some years ago, although such tendencies were observed even earlier (Sundet, 1997). With regard to knowledge in use, several features appear that support the changes already mentioned. In the responses to a direct question about what kind of knowledge staff see as important, three types of knowledge appear. They are all explicitly related to experiences or knowledge acquired through practice, and not to formal knowledge or education. One type of knowledge is what we could call causal knowledge, or the ability to foresee the consequences of certain events. It requires that you know the people, know how they react, not on a general level but on a personal and contextual level. Or, as one interviewee expressed it: “It is knowing that if something occurs, it is because…” Another type of knowledge, or rather a competence, is the ability to facilitate social processes, especially the solving of conflicts and the re-establishment and maintenance of a good atmosphere. Some, it was argued, have the ability to heal crises that can occur from time to time, such as conflicts that become locked or relationships that are damaged. But sometimes such situations cannot be solved internally. A third type of knowledge therefore appears: the ability to come in from outside 66



and assist people to reflect and to “get back on a good track”, as one staff member expressed it. In one of the focus-group interviews, people said that the habilitation service fulfilled such a role. The good thing about the habilitation service, they said, is that they don’t act like experts. “They don’t tell us what to do, and therefore they are also able to help.” The habilitation service has teams in every county. In the other municipality, located in a different county, staff had a very different experience with the habilitation service. They didn’t feel they had this kind of support from any of the specialised services: “They don’t know any more than us and they are not on our side,” they said. Both groups seemed to agree that experts, as such, do not contribute much in relation to the challenges that community-service workers face in their everyday practice. These three types of knowledge make up the third feature of change, which we could call a move from technology to insight. There is not so much a call for methods, or a modus operandi, in how to realise certain general principles or purposes. This is probably because there is no overall plan to follow, as there was in the normalisation work. Instead, there is an attempt to develop and cultivate personal and practical abilities, conducts and deeds, in order to be able to meet individual needs and to create and maintain the best life possible for each person on their own terms. In relation to these idealistic values, it is important to underline that this is not a description of what care workers actually do, but rather our interpretation of what they say they do. We know that there is not always agreement between what people say and what they do. Sometimes talk can serve as compensation for not doing (Brunsson, 1985), and sometimes it simply takes time before adopted values translate into action (Røvik, 1998). The themes selected are also deliberately chosen to show contrasts to what we observed in the group-home study. This means that a new observational study might have concluded that the actual differences are not that obvious. The fourth and final feature of change we will mention here is the ease with which the staff talk about daily life in the group home. It could be expressed as a move from ambivalence to confidence. It doesn’t mean that they always know what to do or how to handle different situations. On the contrary, one of the interviewees said: © The authors and Studentlitteratur

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“Every day is full of big dilemmas”, but the dilemmas do not seem to cause the same frustrations as before. The dilemmas are not even the same as they were. They are less situational and more existential. While the ambivalence that we pointed out in our group-home study was related to practical dilemmas, and to the problems of using tacit knowledge about a world that was taken for granted as a reference for deciding what is normal in concrete situations, the dilemmas that staff mention in the current study are eternal dilemmas, dilemmas that are equal both for themselves and for the people they serve. The dilemmas do not undermine their ability to make practical decisions, as ambivalence did for the staff in the group-home study.

A critical obligation The findings of our current study no doubt sound like a clear improvement on the overriding rigidity and ambivalence that characterised the group homes we investigated in the 1990s, soon after the institutional closure. Again, we must make some reservations based on the fact that we only have the stated values and opinions of staff and not observations of what is actually going on in the group homes. The accounts are also fairly limited. But the study does indicate that staff members are much more relaxed, that rules and regulations are less strict, that more personal considerations are taken into account and that focus has shifted from the pursuit of general goals to the improvement of individual lives. Now it is time to ask some critical questions. One is whether or not this study gives a reasonable picture of how staff members working close to people with intellectual impairments today actually think and act. Another question is, if the picture is fairly accurate, to what extent it should be regarded as an improvement. Is the light seen in the tunnel really the way out, or is it a train coming towards us? Or, to be less symbolic, do the practice and values described contain elements of risk when other social factors are taken into account? Does the ideology expressed contain seeds of a possible distortion, as we have seen in the once-so-progressive principle of normalisation? 68



We do not intend to fall into a general scepticism or deny the possibility that the situation for people with intellectual impairments has in fact improved. Instead, we argue for a certain sobriety or vigilance in relation not only to eulogies but to all sorts of unambiguous accounts of social reality. It is the researcher’s obligation to ask whether or not an account is trustworthy, or what a certain account might imply. As early as 1982, before the deinstitutionalisation process really took off, Mårten Söder warned about the possible side effects of the ideologies underpinning the deinstitutionalisation process; the ideologies of decentralisation, normalisation and integration, ideologies that he himself supported (Söder, 1982). His concerns regarding these ideologies were that they drew attention away from the basic question of how to secure sufficient resources for those with the most extensive need for support. He warned that the risk of the focus on general values such as normalisation and integration, although not intended, would serve to hide specific needs of those with the most profound impairments. Söder’s main argument was that ideologies are partly products of the historical, political and economic circumstances in which they arise. This relationship is not direct or easily detectable. It is more a question of rationalising and incorporating social and economic changes ideologically than it is a conscious adaptation to such changes. Ideologies give certain directions for action. But ideologies are also simplifications, and for ideologies to be implemented it is necessary that these simplifications are adjusted to practical realities, which often reveals the inadequacy of the realism of ideologies. The result might be that the ideology is never implemented or that it is implemented but with a different outcome than expected.

For better or for worse? What if we transfer these warnings to the values expressed by the interviewees in our current study? In many ways what these values express is a continuation and perhaps even a reinforcement of the same ideological elements that Söder (1982) was analysing. The shift of attention was perhaps not, after all, as substantial as Söder had warned, at least not in the direction suggested. Normalisation did not lead to retrenchment in public spending on services for © The authors and Studentlitteratur

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people with intellectual impairments, at least not in the early days of the reform. Instead, professionals turned normalisation into a technology for accomplishing normal patterns of living, for better and for worse. In our analysis of the group homes of the 1990s (Sandvin et al., 1998), our conclusions were more or less in line with what the psychologist from the habilitation service said about behavioural therapy. There was nothing wrong with normalisation work as such. On the contrary, when applied in a sensible way it probably made an important difference for the people in question. At least staff had a purpose, something they wanted to accomplish. This was why the dilemmas caused so much ambivalence and frustration. The problem was neither the purpose itself nor the zealousness with which it was implemented but rather the methods chosen, and the failure to take personal considerations into account. What we can detect from the latest interviews is that the primary goal guiding staff is that dwellers in the group homes should have a good life. Very few ambitions are expressed by staff members on behalf of the people they serve, beyond the realisation of well-being and individually expressed desires. A degree of dissatisfaction is expressed with regard to resources, but not in terms of obstacles to specific accomplishments. Staff are also very confident in what they are doing, and therefore they feel that experts have very little to offer in terms of improving the lives of the people they serve. How they can actually tell what constitutes a good life for each individual is harder to know. Are people exposed to situations and challenges that give them the possibility to develop and to choose between alternatives? Is it possible that not involving experts, with other priorities and assessments than the staff, might deprive people of the possibilities for an enriched life?

A normative conclusion Critical research must be based on a set of fundamental values. All forms of critique require some standards to which the critique can be referred (Skjervheim, 1996). If not, the critique will serve nobody but the critic. 70



We have reason to believe that the values and experiences expressed by our interviewees reflect an improvement on the rigid regimes of normalisation work. A more individualistic approach to the needs of people with intellectual impairments is definitely an advance compared to the categorical and collective character of traditional services. But the same values might also very well draw the attention away from basic individual needs that people themselves are not able to express or even desire. And they might very well serve as arguments – and a disguise – for public administrators in their efforts to limit public expenditure. It is an important task for research to monitor and explore such possible side effects. This will require a critical distance from ideological programmes and yet a faithfulness to basic values.

References Aas, O.E. (1954). Offentlig omsorg for åndssvake i Norge 1870–1920 [Public services for the mentally retarded in Norway 1870–1920]. Master’s thesis. Historisk institutt, University of Oslo. Bank-Mikkelsen, N.E. (1969): A metropolitan area in Denmark: Copenhagen. In: Kugel, R. & Wolfensberger, W. (Eds). Changing patterns in residential services for the mentally retarded. Washington DC: President’s Committee on Mental Retardation, pp. 227–254. Brunsson, N. (1985). The irrational organization. Irrationality as a basis for organizational action and change. New York: John Wiley & Sons. Froestad, J. (2000). Dannede eller duelige – konstruksjonen av den “døvstumme” i Skandinavia i perioden fram til 1840” [Cultured or able – constructions of the “deaf mute” in Scandinavia up to 1840]. In: Froestad, J., Solvang, P. & Söder, M. (Eds). Funksjonshemming, politikk og samfunn [Disability, politics and society]. Oslo: Gyldendal Akademisk, pp. 53–81. Giddens, A. (1991). Modernity and self-identity. Self and society in the late modern age. Cambridge: Polity Press. Hansen, B.S. (1996). Something rotten in the state of Denmark: eugenics and the ascent of the welfare state. In: Broberg, G. & Roll-Hansen, N. (Eds). Eugenics and the welfare state. Sterilization © The authors and Studentlitteratur

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policy in Denmark, Sweden, Norway and Finland. East Lansing, Michigan State, University Press, pp. 9–76. Kirkebæk, B. (1993). Da de aandssvage blev farlige [When the mentally retarded became dangerous]. Copenhagen; Forlaget Socpol. Koch, H. (1959). N. F. S. Grundtvig. Copenhagen: Gyldendal. Kristiansen, K. (1993). Normalisering og verdsetting av sosial rolle [Normalisation and social role valorisation]. Oslo: Kommuneforlaget. Nirje, B. (1969). The normalization principle and its human management implications. In: Kugel, R. & Wolfensberger W. (Eds). Changing patterns in residential services for the mentally retarded. Washington DC: President’s Committee on Mental Retardation, pp. 179–196. Røvik, K. (1998). Moderne organisasjoner. Trender i organisasjonstenkningen ved tusenårsskiftet [Modern organisations. Trends in the perception of organisations by the turn of the millennium]. Bergen: Fagbokforlaget. Sandvin, J.T. (1992). Fra normalisering til sosial integrasjon [From normalisation to social integration]. In: Sandvin, J.T. (Ed.). Mot normalt? Omsorgsideologier i forandring [Care ideologies in a state of change]. Oslo: Kommuneforlaget, pp. 165–202. Sandvin, J.T. (1996). Velferdsstatens vendepunkt. En analyse av reformen for personer med utviklingsshemming som uttrykk for brytninger i velferdsstaten [The welfare state’s turning point. An analysis of the reform for people with intellectual impairments as an expression of change in the welfare state]. PhD dissertation, University of Tromsø. Sandvin, J.T., Söder, M., Lichtwarck, W. & Magnussen, T. (1998). Normaliseringsarbeid og ambivalens. Bofellesskap som omsorgsarena [Normalisation work and ambivalence. Group homes as an arena for human services]. Oslo: Universitetsforlaget. Skjervheim, H. (1996). Sosiologien som vitskap: Positiv eller kritisk disiplin? [Sociology as science: positive or critical discipline?]. In: Skjervheim, H. (1996). Deltakar og tilskodar, og andre essays [Participant or spectator, and other essays]. Oslo: Aschehoug. Sundet, M. (1997). Jeg vet jeg er annerledes – men ikke bestandig [I know I’m different – but not always]. PhD dissertation, Institutionen för kulturantropologi och etnologi, Uppsala University.

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Söder, M. (1978). Anstalter för utvecklingsstörda. En historisk sociologisk beskrivning av utvecklingen 1866–1944 [Institutions for the intellectually disabled. A historical-sociological description of the development 1866–1944]. Stockholm: ALA. Söder, M. (1982). Om osynliggörende av funktionshindrades behov [Hiding the needs of disabled people]. Tidsskrift för Nordisk Förening för Pedagogisk Forskning 3: 15–20. Söder, M., Lichtwarck, W., Sandvin, J.T. & Magnussen, T. (2001). “Group homes as an arena for normalization Work. Tizzard Learning Disability Review, European Issue: 40–44. Söder, M. (2003). Normalisering, handicappolitik och forskning [Normalisation, disability policy and research]. In: Nirje, B. (Ed.). Normaliseringsprincipen [The normalisation principle]. Lund: Studentlitteratur, pp. 189–209. Tøssebro, J. (1999). Da tidevannet snudde. Perspektiver på utviklingshemming og tjenester for utviklingshemmede under fremveksten av dagens politikk: 1960–1975 [When the tide turned. Perspectives on intellectual disability and services for the intellectually disabled during the development of recent politics: 1960–1975]. In: Dalen, M., Rygvold, A.-L. & Tangen, R. (Eds). Mangfold og samspill: om minoriteter i familie og samfunn: festskrift til Barbro Sætersdal [Variation and interaction: minorities in the family and society. Festschrift for Barbro Sætersdal]. Oslo: Universitetsforlaget, pp. 15–37.


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3 In pursuit of a measure of generosity in Swedish disability care

3 In pursuit of a measure of generosity in Swedish disability care Barbro Lewin and Lina Westin Although one important aim of the Swedish disability reforms of the 1990s was to achieve a uniform regional implementation of the new disability act, commonly called LSS, public statistics still display differences between municipalities. An ongoing project, “A kinder, gentler democracy? Disability politics in Swedish municipalities”, aims at explaining the variation between the municipalities regarding their care for people with disabilities. The study is a total investigation of all municipalities, supplemented with qualitative case studies. Our first task has been to construct a measure of generosity concerning the implementation of LSS. We have found that generosity, as we have defined the concept, is multidimensional. Three dimensions emerge: Volume, Law and Change. The measure should be considered preliminary and developed further to serve as the dependent variable in the project to explain the variation in municipal implementation.

Introduction One important aim of the Swedish disability reforms of the 1990s was to achieve a uniform regional implementation of the new disability act, commonly called LSS (Lag om stöd och service till vissa funktionshindrade). This, however, is not what has happened. Public statistics display differences between municipalities in various aspects, such as the number of individuals receiving measures according to LSS, municipal costs of disability care and the exercise of authority. An ongoing project, A kinder, gentler democracy? Disability politics in Swedish municipalities, aims at testing whether the variation between Swedish municipalities regarding their care for people with disabilities can be explained by the form of municipal government. The study is a total investigation of municipalities, supplemented with qualitative case studies. We seek an explanation in a much-esteemed political science theory on so-called consensus © The authors and Studentlitteratur

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democracy, established by Arend Lijphart. The theory states that in countries where the relationship between political parties is characterised by cooperation instead of conflict, democracy will be of a higher quality and will display “kinder, gentler, and more generous policies” (Lijphart, 1999, p. 294). Consensus democracies are, for instance, more likely to be welfare states. One indicator of the degree to which a democracy is a welfare state is its policies towards people with disabilities. The project will test Lijphart’s theory on the Swedish municipal level, more precisely by studying municipal disability politics. The study also involves the testing of counter hypotheses. The principal purpose of this article is to construct the dependent variable for the project; that is, generosity concerning the implementation of LSS in Swedish municipalities. LSS is the crown jewel of the disability reform of the 1990s and came into force on 1 January 1994. It is a special-rights law, giving priority to the mental, physical and social needs of the most severely disabled people in society. Three target groups are mentioned. The first two refer to people with intellectual disabilities, the third to people with physical or mental disabilities. Disabled people can apply for ten different support measures, including residential services and personal assistance. People with less severe disabilities are reduced to applying for support according to the Social Services Act. This act offers the same kind of support as LSS but is less ambitious in its scope. There is another difference that makes it a less suitable subject for our study. This concerns the character of the legislation. The Social Services Act is a so-called goal-oriented legislation that gives citizens certain limited, legal rights to support, but how to provide the support is locally determined. LSS, however, is a mandatory-rights law and offers support as an unconditional right if certain criteria are satisfied. This means that variation that is not due to demographic differences in needs is questionable. As long as it does not benefit the disabled, that is. To exceed formal legal demands is a sign of ambition in line with the political intentions and therefore acceptable. The purpose of this article is twofold: 1 To identify variables that measure generosity 2 To identify underlying dimensions among the variables 76



In search of variables expressing generosity What is a “kinder, gentler, and more generous” disability policy? To measure social welfare, Lijphart uses Esping-Andersen’s measure of de-commodification; that is, to what extent welfare programmes in different countries enable people to enjoy a reasonable standard of living independently of market participation. Of importance here are the rules and standards of the welfare programmes, for instance how easy it is to get access to the programmes and what level of support they permit (Esping-Andersen, 1990, chapters 1 and 2). In an implementation study of LSS, the number of disabled people with LSS-support, as well as costs for given support, are intuitive measures of accessibility and generosity. Accessibility of support does not only mean promises of support; that is, decisions made by welfare officers. Accessibility also means that the disabled person actually gets the support. Hence, a necessary aspect of “kinder, gentler, and more generous policies” is an exercise of municipal authority in accordance with the rule of law. The fact that LSS is mandatory indicates that there is no room for variation in ambition and that all variation in generosity must be due to demographic differences. Municipalities simply provide support and services to those who claim their legal rights. This is a formally correct but passive strategy. However, a successful implementation may require a more active strategy. The political intentions are not only expressed as individual rights but also as municipal duties. These duties may include guidance, visiting work and inventories of needs in order to identify potential rights-bearers. Such people are entitled to support but for different reasons they have not applied, or they have applied but their cases have not been handled properly. Omission to fulfil these duties cannot be appealed against and the supervising authorities have but little means to make municipalities take on such engagements (Lewin, 1998, chapter 9). An active strategy that goes beyond the formal claims is a sign of a desire to be generous. We would like to complement variables that the municipalities cannot influence with variables that may express an ambition to also reach potential rights-bearers. Municipal data, collected by the Swedish authorities, is used to analyse the variation of the output of municipal disability politics. Throughout the study we employ numbers and costs per inhabitant © The authors and Studentlitteratur

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to control for municipal size. The project deals with the Swedish political term of office 1998–2002. The year 2002 is chosen for most variables in order to give the politicians as much time as possible to influence the policy area. A comparison over the years will also be made.

Rights-bearers The public statistics give figures on a municipal level for the number of people receiving support measures in accordance with LSS. We use the number of individuals per 10,000 inhabitants who, on 1 September 2002, received one or more LSS-measures (excluding the measure Counselling and Support, which is mostly provided by the county councils) (Socialstyrelsen, 2003a, table 4). The regional variation in the relative number of people receiving support according to LSS may in part be an effect of deinstitutionalisation; that is, the mandatory closing down of institutions for the intellectually disabled. Many people with intellectual disabilities did not move back to their original municipalities but stayed where the institutions were situated. The reform was (almost) finished by the end of 1999 (Socialstyrelsen, 2000, p. 9). What has happened after that might be a measure of the ambition to reach potential rights-bearers in target groups 1 and 2. We use data on the change 1999–2002 in the number of individuals per 10,000 inhabitants in the first and second target groups receiving one or more LSS-measures (Socialstyrelsen, 2000 and 2003a, table 4). It could be argued that a rise in the number of rights-bearers belonging to the third target group (people with severe physical and mental disabilities) particularly indicates a high level of ambition to be generous. The application procedure is considered more difficult than for people with intellectual disabilities where a diagnosis is sufficient. Such a diagnosis inherently means great social needs. When it comes to the third target group, an assessment has to be made of the durability and magnitude of the disability and also the extent of social needs for support. Most likely, a positive development for the third target group demands more activity from the municipalities in terms of guidance, visiting work and inventories of needs than for the other two target groups. We use data on the change 1999–2002 in the number of individuals per 10,000 inhabit78



ants in the third target group receiving one or more LSS-measures (Socialstyrelsen, 2000 and 2003a, table 4). However, not all of those who apply for support actually get it, even if they are entitled to it. Deficient exercise of municipal authority sometimes stands in the way. Three variables are used to measure generosity or, rather, the lack of generosity, in this respect. The first measure accounts for the situation when municipalities do not implement their own decisions. In this case, we use the number of municipal decisions per 10,000 inhabitants regarding LSS-measures not carried out by 31 December 2001. The second measure accounts for the situation when municipalities do not obey decisions by the administrative courts after municipal rejections have been appealed against. More specifically, we look at the number of unenforced judgements per 10,000 inhabitants regarding LSS-measures by 31 December 2001. The third measure is the accumulated number of rejections per 10,000 inhabitants in spite of established needs during the year 2002. It captures the tendency to turn down an application even where the need for support is evident, if the municipality considers it impossible to carry out the decision within a reasonable time (Länsstyrelserna, 2002, 2003).

Costs of actual rights-bearers Although expenses may be the most intuitive measure of generosity, we agree with Esping-Andersen (1990, pp. 18–21) that focusing on spending can be misleading. We do not know how the money is spent and who benefits from it. But even if the number of people who actually get support is a better measure of generosity, we consider cost to be a valid measure as well. We use data on municipal net costs per inhabitant of all LSS-measures except Counselling and Support provided in 2002 (Socialstyrelsen, 2003b, table 2). In addition to Esping-Andersen’s measure of de-commodification, Lijphart looks at social expenditure as a percentage of gross domestic product (GDP). There is no existing equivalent to GDP on the municipal level. However, giving priority to the disability area over other municipal policy areas seems to be a reasonable measure of generosity. LSS is called a prioritising law and the National Board of Health and Welfare points to different priorities as a possible explanation for regional variation (Qvarlander, Flyckt & Brusén, © The authors and Studentlitteratur

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2004). Thus, we look at net costs of LSS-measures per inhabitant as a percentage of the total net costs per inhabitant of the municipal sector as a whole (Socialstyrelsen, 2003b, table 2; Svenska kommunförbundet & SCB, 2003, table 1).

Municipal variation in the different variables There is a considerable variation among the municipalities when it comes to the level of generosity towards the disabled. This can clearly be seen in table 1 where measures of central tendency and dispersion for the eight variables are presented. The first variable shows the actual rights-bearers, that is, those who have applied for and been granted LSS-support. The variation is substantial considering the political intention to achieve a uniform implementation. Some municipalities have only 13 LSS-cases per 10,000 inhabitants, others have ten times as many.

Table 1 Descriptive statistics for variables measuring generosity. Variable

Minimum

Maximum

Mean

Median

Standard Deviation

N***

People with LSSmeasures*

13

131

57

56

17

289

Changes 1999–2002 in –40 target groups 1+2*

25

4

4

8

288

Changes 1999–2002 in –21 target group 3*

24

0,5

0,2

4,8

288

Decisions not carried out*

0

17

2

1

3

289

Unenforced judgements*

0

5

0,1

0

0,5

289

Rejections despite needs*

0

2

0,1

0

0,4

289

LSS-costs**

589

5856

2501

2452

852

289

LSS-costs as percentage of total municipal costs

2

17

7

7

2

289

* measured per 10,000 inhabitants; **measured in SEK per inhabitant; ***Data from adjacent years have in some cases been used to make up for missing data.

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Two variables measure the development over time of the number of LSS-cases. The first concerns target groups 1 and 2. On a national level, there has been a modest rise in the number of LSS-cases, from 40 per 10,000 inhabitants in 1999 to 45 in 2002 (Socialstyrelsen, 2000 and 2003a, table 4). If we look at the different municipalities, however, there are both municipalities which show an increasing number of people receiving LSS-measures and also those where the number of actual rights-bearers has decreased. The numbers range from an increase of 25 people to a decrease of 40 people per 10,000 inhabitants. The total number of LSS-cases in the third target group is the same in 2002 as in 1999, that is, 10 people per 10,000 inhabitants (Socialstyrelsen, 2000 and 2003a, table 4). Just as for target groups 1 and 2, there are differences between the municipalities. The numbers range from an increase of 24 people to a decrease of 21 people per 10,000 inhabitants. The next three variables concern the actual accessibility of welfare services; the municipal will to realise legal rights to LSS-support. There is variation in all three variables. Decisions not carried out, that is, lack of enforcement of the municipalities’ own decisions, shows a considerable variation (0–17 decisions per 10,000 inhabitants; 94 municipalities have none). Unenforced judgements mean that municipalities actively disobey court decisions. The variation is less for this variable. In 242 municipalities, no unenforced judgements existed at the end of the year 2001. The maximum number is 5 unenforced judgements per 10,000 inhabitants. The last type of deficient exercise of authority, Rejections despite needs, displays quite a similar pattern to unenforced judgements. In 241 municipalities, no such rejections occurred during the year 2001. The maximum number of rejections is 2 per 10,000 inhabitants. If we turn to the costs of LSS, there has been a rise nationally in the costs of providing LSS-support during the period 1998–2002, from 1,729 SEK per inhabitant in 1998 to 2,475 SEK per inhabitant in 2002 (Socialstyrelsen, 1999b, table 4; Socialstyrelsen, 2003b, table 2). Costs for 2002 show a great variation between municipalities. Minimum costs are only one tenth of maximum costs (589 SEK and 5,856 SEK per inhabitant respectively). If we look at the relative cost measure, LSS-costs of net municipal costs, there is also a substantial variation (between 2 and 17%). © The authors and Studentlitteratur

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In search of the underlying dimensions of generosity In addition to the variation in the different variables measuring generosity, we want to know how the variables are empirically related to each other. They are therefore submitted to correlation and factor analysis. Factor analysis is a statistical technique used to represent relationships among sets of variables by identifying a relatively small number of underlying dimensions, so-called factors (Norusis, 1994, p. 47). The correlation matrix tells us that the first three variables, those concerning the number of LSS-cases and the cost of providing the measures, are strongly correlated. From the matrix, we can also conclude that two of the variables concerning deficient exercise of authority, Unenforced judgements and Rejections despite needs, are significantly correlated with each other. The variable, Decisions not carried out, is also related to these two variables, although the correlation is weaker. However, unlike Unenforced judgements and Rejections despite needs, the variable Decisions not carried out also shows a statisTable 2 Correlation matrix of variables measuring generosity. Variable

1

1 People with LSSmeasures

1

2

3

4

5

2 LSS-costs

,714* 1

3 LSS-costs as percentage of total net municipal costs

,642*, 944*

1

4 Decisions not carried out

,232*, 187*

,172* 1

5 Unenforced judgements

–,035 –,010 ,001

,151* 1

6 Rejections despite needs

,062

–,012 ,012

,154* ,405* 1

7 Changes 1999–2002 in target groups 1+2

,049

–,162* –,119* ,015

8 Changes 1999–2002 in target group 3

,182* –,039 –,032 –,047 –,011 ,033

,039

6

7

8

,165* 1 ,054

1

* Correlation is significant at the 0.05 level (2-tailed). Pearson’s correlation coefficients.

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tically significant correlation with all three variables concerning numbers and costs. The variables measuring change correlate only weakly with some of the other variables. Through a factor analysis, we can get more information about the relationship between the variables. The results are presented in table 3. The analysis results in three different factors. The values that are shown for each variable are called factor loadings and can be interpreted as the correlation coefficients between the variable and each factor. The three extracted factors account for 64% of the variance relative to the total variance in all the variables. The variables all concern the municipal implementation of LSS. This rights legislation is mandatory and costly for the municipalities and we consider the variables valid measures of municipal generosity in the specific social-welfare domain that is disability care. However, the factor loadings suggest that generosity towards people with disabilities in reality entails three different dimensions. In table 3, factor loadings above 0.4 have been marked. The first dimension consists of variables measuring the number of LSS-cases and costs of the LSS-measures in 2002. The variables in the second dimension are those related to deficient exercise of authority. The third dimension consists of the two variables measuring changes over time in the number of LSS-cases. We will refer to the dimensions as Volume, Law and Change respectively.

Table 3 Varimax rotated factor matrix of variables measuring generosity. Variable

Factor 1

Factor 2

Factor 3

People with LSS-measures

,852

,047

,250

LSS-costs

,957

,021

–,144

LSS-costs as percentage of total net municipal costs

,929

,039

–,130

Decisions not carried out

,277

,476

–,105

Unenforced judgements

–,068

,785

–,032

Rejections despite needs

–,019

,779

,216

Changes 1999–2002 in target groups 1+2

–,122

,204

,613

,092

–,153

,788

Changes 1999–2002 in target groups 3

Extraction method: Principal Component Analysis. Eigenvalues over 1 extracted. Rotation method: Varimax with Kaiser Normalisation.


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According to the factor analysis, generosity is not a homogenous concept. A municipality can be generous in terms of providing LSSmeasures and spending money on disability care, and at the same time refuse disabled people their legal rights. The relationships between different variables and dimensions are, however, sometimes complex. It is, for instance, noteworthy that Decisions not carried out correlates with the variables in the Volume dimension, while the other two variables in the Law dimension do not (see table 2). It thus seems as if the number of decisions not carried out increases with the total number of decisions, while the number of Unenforced judgements and Rejections despite needs remains uninfluenced by such factors. It is not surprising that the volume of disability care affects the ability to carry out the decisions. What is remarkable is that this seems totally irrelevant when it comes to obeying court judgements and rejecting applications even where people are found to have a legal right to LSS-support. The conclusion must be that different mechanisms are at work, not only for the different dimensions but also for the different variables in the Law dimension and that the variation in the variables thus may have, at least in part, different explanations.

Concluding remarks The measure of generosity should be considered preliminary and will be developed further to serve as the dependent variable in the project. So far, we have found that generosity, as we have defined the concept in accordance with Arend Lijphart, is multidimensional. Three dimensions emerge: Volume, Law and Change. The fact that generosity contains three different dimensions indicates that there may be different explanations for the variation. An important task for the future is to better isolate politicians’ active desire to be generous from other possible causes of variation. If we look at the Volume dimension concerning LSS-cases and costs, there is a considerable variation between municipalities. This could simply be due to a variation in the number of people with disabilities living there. However, it can be questioned whether the demographic variation in disability really is of that magnitude. The 84



number of LSS-cases reflects an administrative definition of disability, which means that people with disabilities are defined as those receiving support (Barron, Michailakis & Söder, 2000, pp. 139–141). But we should also consider the unknown number of potential rights-bearers. The politically expressed estimation before the reform was that about 100,000 people had such severe disabilities that they needed the high level of qualitative support that is in accordance with LSS. Although there has been a rise in number on the national level, from about 43,000 people in 1996 to about 49,000 in 2002 (Socialstyrelsen, 1997, pp. 35–39; Socialstyrelsen, 2003a, table 4), the municipalities have so far reached little more than half of the intended number. It has been disputed whether the initial estimation of the number of people who would be entitled to LSS-support was too high. It is clear, though, that the mentally disabled have not benefited from the reform to the extent that was intended (Socialstyrelsen, 1997, pp. 10–11; Socialstyrelsen, 1999a, pp. 113–114). It is thus reasonable to think that at least part of the variation in the number of actual rights-bearers is due to a variation in ambition to be generous. A second area in the Volume dimension concerns the municipal costs of LSS. To better capture the politicians’ generosity; that is, the will to give priority to the disability area over other municipal policy areas, we would have preferred to have data on municipal budgets. However, this is not available in public statistics. We are left with the output of the combined political and administrative action. The problem of discriminating between the actions of politicians and officials is relevant for all dimensions. In the project, an effort will be made to distinguish between the two groups of actors. To sum up, it is difficult to discern whether the variation in the Volume variables merely reflects a passive strategy; that is, giving support to those who claim their right, or whether it also captures a variation in the ambition to reach potential rights-bearers. Demographic differences, especially those caused by deinstitutionalisation, will be controlled for in the project, since the aim is to identify and explain the variation in ambition. The variables in the Law dimension all concern deficient exercise of authority. To actively disobey court decisions is a serious offence against the rule of law. So also is not carrying out the municipalities’ own decisions. The individual is left with no possibility to © The authors and Studentlitteratur

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appeal against the decision. The last kind of deficient exercise of authority, Rejections despite needs, was explicitly discarded in the political documents preceding LSS. However, in 2000, the national authority of the Legal Justice Ombudsman (Justitieombudsmannen) gave official sanction to this type of action. The main argument was that a rejection gives the disabled person a chance to appeal against the denial (JO, 2000). The National Board of Health and Welfare has clearly rejected this strategy (Socialstyrelsen, 2003c, pp. 101–103). From the disabled people’s point of view, their right to support is confirmed by the welfare officers. Yet they do not actually get the support. It is true that this strategy leaves the person with a possibility to appeal. The result may then be a favourable decision by the court that the municipality in its turn may obey. It is probable, however, that this alternative will prove a harrowing and time-consuming experience. Our conclusion is that this strategy, as well as the two others in the Law dimension, signifies a lack of municipal generosity. If we turn to the Change dimension, there seems to be a municipal variation in generosity concerning all three target groups. We cannot tell whether this means that some municipalities are more active than others in reaching potential rights-bearers or whether the disabled people have been more active themselves. The variables measuring change are not correlated with each other, which implies that different causal mechanisms are probably at work. Deinstitutionalisation has already been mentioned as a possible explanation of the variation in the number of people receiving LSSmeasures. This concerns the first two target groups, those with intellectual disabilities, and is partly the reason why we chose to measure the development over time. In this way, we hope to control for the uneven distribution of people with disabilities, caused by former localisation of institutions. However, the fact that a municipality had accommodated an institution and then received the inhabitants when the institution closed down may not only mean a rise in people in need of social support. It has probably also influenced attitudes towards intellectually disabled people in that municipality, and hence also the level of generosity. In scientific literature the concept of path dependency is used to capture the role of history and tradition for the present policies (Trydegård & Thorslund, 2000). When it comes to the third target group, the earlier 86



mentioned difficulties related to application procedures may play a role. These possible mechanisms will be investigated further in the project.

Acknowledgements This article is based on an ongoing project A kinder, gentler democracy? Disability politics in Swedish municipalities. The project leader is Professor Leif Lewin of the Department of Government at Uppsala University. The project is supported by a grant from the Council for Working Life and Social Research. The authors would like to thank the other members of the project, Leif Lewin and Hanna Bäck, for their valuable support and advice.

References Barron, K., Michailakis, D. & Söder, M. (2000). Funktionshindrade och den offentliga hjälpapparaten [Disabled people and public services]. In: SOU (2000:38). Välfärd, vård och omsorg. Antologi från Kommittén Välfärdsbokslut [Welfare and care. An anthology from the Committee on balancing the welfare accounts]. Stockholm: Fritzes offentliga publikationer, pp. 137–170. Esping-Andersen, G. (1990). The three worlds of welfare capitalism. Cambridge: Polity Press. JO (2000). Beslut 2000-09-06. Dnr 2577–2000. Stockholm: Justitieombudsmannen. Lewin, B. (1998). Funktionshinder och medborgarskap. Tillkomst och innebörd av de två rättighetslagarna omsorgslagen och LSS som komplement till socialtjänstlagen och hälso- och sjukvårdslagen [Disabilities and citizenship. The origins and implications of two rights laws (the Special Services Act and the Disability Act) that complement the Social Services Act and the Health and Medical Services Act. With an English summary]. Uppsala: Socialmedicinsk tidskrifts skriftserie nr 55. Lijphart, A. (1999). Patterns of democracy. Government forms and performance in thirty-six countries. New Haven: Yale University Press. © The authors and Studentlitteratur

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Länsstyrelserna (2002 and 2003). Reports regarding deficient municipal exercise of authority in 2001 and, in some cases, 2002, collected by the Swedish county administrative boards. Norusis, M.J. (1994). Factor analysis. SPSS Professional Statistics 6.1. Manual. Chicago, SPSS, pp. 47–81. Qvarlander, A., Flyckt, K. & Brusén, P. (2004). Handikappomsorg [Disability care]. Socialmedicinsk tidskrift 81: 156–163. Socialstyrelsen (1997). Handikappreformen. Slutrapport 1997 [The disability reform. Final report 1997]. Stockholm: Socialstyrelsen. Socialstyrelsen (1999a). Välfärd och valfrihet? Slutrapport från utvärderingen av 1995 års psykiatrireform [Welfare and freedom of choice? Final report from the follow-up of the psychiatric reform in 1995]. Stockholm: Socialstyrelsen. Socialstyrelsen (1999b). Jämförelsetal för socialtjänsten 1998 [Comparative figures for the social services 1998]. Stockholm: Socialstyrelsen. Socialstyrelsen (2000). Insatser till personer med funktionshinder 1999 [Support measures to people with disabilities 1999]. Stockholm: Socialstyrelsen. www.socialstyrelsen.se, 2004-10-15. Socialstyrelsen (2003a). Funktionshindrade personer – insatser enligt LSS 2002 [Disabled people – LSS-measures 2002]. Stockholm: Socialstyrelsen. www.socialstyrelsen.se, 2004-10-15. Socialstyrelsen (2003b). Jämförelsetal för socialtjänsten 2002 [Comparative figures for the social services 2002]. Stockholm: Socialstyrelsen. www.socialstyrelsen.se, 2004-10-15. Socialstyrelsen (2003c). Bostad med särskild service för vuxna enligt LSS. Stöd för rättstillämpning och handläggning [Residential services for adults in accordance with LSS. Support for application of the law and the handling of cases]. Stockholm: Socialstyrelsen. Svenska kommunförbundet & SCB (2003). Vad kostar verksamheten i din kommun? Bokslut 2002 [What are the costs of the public sector in your municipality? Closing the books 2002]. <www.lf.svekom.se>, 2004-10-15. Trydegård, G.-B. & Thorslund, M. (2000). Explaining local variation in homehelp services: the impact of path dependency in Swedish municipalities 1976–1997. In: Trydegård, G.-B. (2000). Tradition, change and variation: past and present trends in public old-age care. Stockholm: Stockholm University.

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4 Owners of chemistry, hope and evidence

4 Owners of chemistry, hope and evidence Kristjana Kristiansen

Introduction The notion of recovery is a recent yet rapidly emergent area of research in the mental health field, exploring the process of improvement, especially for people with serious problems such as those diagnosed with schizophrenia-spectrum disorders. Recovery research has immense implications for service design and provision, yet despite wide proclamations of socio-political reform in Scandinavia, very few individuals are engaged in studying recovery and working to translate its lessons into practice. This is perhaps not surprising since recovery research confronts deeply rooted beliefs of established medical psychiatry, shaking the foundations of a long-standing empire that continues to control how reform rhetoric is interpreted, funded and implemented. Recovery research offers an arena where users and survivors of the psychiatric system and their families meet academics in a power-sharing effort, seeking to understand what kind of help is actually helpful. Recovery is an arena of hope. Hope is something that has long been declared impossible for many people, most notably those diagnosed with schizophrenia, where chronicity has been a defining characteristic of the syndrome. The breakdown of such myths is central to recovery research and often essential in the recovery process for the affected individual. This chapter first discusses two themes found to be central in the recovery process: the role of hope, and understanding what “good chemistry” means in a helpful relationship. This part of the chapter draws on selected empirical material from recent qualitative research studies in which I have been involved, in part with my colleague Marit Borg (described in detail elsewhere: Borg and Kris© The authors and Studentlitteratur

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tiansen, 2004; Kristiansen, 2004a). I then change the tone of the chapter and address some more general issues that I feel are of importance in this field, called “recovery research”. These discussions are partly based on my personal research experiences, but are additionally influenced by my contacts and involvement in a range of international arenas where the recovery approach is heralded, to other arenas where this approach is seen as “bad science” and romantic rhetoric. I suggest that the truth (as usual?) lies somewhere in the middle, and that debate and further scrutiny from several perspectives should be encouraged and welcomed instead of “paradigm-defence” positions. Specific topics addressed in this second part are the question of subjectivity as valid knowledge in the mental-health field, including the related issues of “ownership” of reality and evidence (see also Kristiansen, 2004b). Further discussions look at issues of looping and turning, and finally I offer some reflections about recovery research’s ambiguous imagery and its life as a social reform movement.

What is “recovery” and what is “recovery research”? As with many popular terms, “recovery” is inconsistently understood and used, and is somewhat contested. Yet in the alliance between academia and survivor/user movements, certain recurrent common elements can be identified and are briefly described here (cf. Davidson, 2003; Deegan, 1988; Glover, 2002; Turner, 2001). Firstly, recovery from serious mental illness means “getting on with life”, managing most things most of the time, perhaps in one’s own ways and at one’s own pace. It often is not about eradication of symptoms, but rather learning to live with and manage what is distressful. Secondly, recovery means being included in local community life, not merely surviving at society’s margins. Thirdly, recovery is about regaining more control over one’s life and over what is distressful. This typically involves a dimension of intention and active agency rather than empowerment by others, i.e. taking rather than being given control. Fourthly, recovery is a process, not an outcome. Fifthly, and related to the latter point, these processes vary 90



tremendously from individual to individual, a uniqueness that is often essential yet often goes unrecognised because of traditional approaches which tend to be standardised and based on syndrome categories. Sixthly, recovery recognises that some sort of condition of “craziness” is real and a part of human diversity (what many disability researchers call “impairment”), but also acknowledges that the social consequences are equally devastating or even more so. Related to this is the underlying belief that many people with mental-health problems need help sometimes and are themselves experts in informing us about what is helpful in their recovery process. This last point brings us to one of the core points in what constitutes “recovery research”. So, what is “recovery research”? Recovery researchers do not deny the existence of some condition (here named craziness) in the affected individual, but rather challenge notions such as causality, prognosis, and improvement measures based on clinical outcomes (cf. Davidson & Strauss, 1995; Harding & Zahniser, 1994; Strauss, 1996). A central starting point in recovery research is the (epistemological) belief that relevant knowledge comes from people with lived experience, and that the central aim is to discover and interpret meaning rather than causality (cf. Borg & Kristiansen, 2004; Davidson, 2003; Karp, 1996; Kleinman, 1988). Subjective experiences of affected individuals and their whole life context are seen as central in/to such an inquiry and replace traditional psychiatry’s focus on objectivity, diagnosis homogeneity and decontextualised individual pathology (cf. Kristiansen, 2004b; Strauss & Estroff, 1989; Strauss, 1996). Many recovery researchers are themselves survivors or current users of psychiatric services, or work in alliance with people with lived experience (cf. Beresford, 2000; Davidson, 2003; Deegan, 1988; Trivedi & Wykes, 2002; Turner, 2001). Rationales for such partnerships include epistemological and ideological arguments, as well as a belief in power-sharing which has been additionally identified as helpful in the recovery process (cf. Borg & Kristiansen, 2004; Kristiansen, 2004a, 2004b).


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Hope: who controls the upward climb? Hopelessness is a commonly expressed experience for people with long-term mental health problems, sometimes directly stated and sometimes found in our interpretations. We can find patterns of hopelessness expressed about someone’s personal distress, “illness” or condition, but also about life in general and thoughts about the future. The following quotes are illustrative: I’d given up… so had my doctors. In and out, in and out (of hospital), and these days it’s not easy to get in (in Norway). One psychologist at the clinic rolls her eyes up every year or so when I show up again, we try to laugh – yeah, me, I’m back! Still crazy as a monkey! I’d like a job, but you know, it wouldn’t work. More qualifications? Why bother? Who’d hire me? I used to feel destined to a fate… a lousy life, forever. Couldn’t see anything ahead that wasn’t bleak and confusing.

Such expressions mirror what is often presented either explicitly or implicitly by sanctioned experts in the professional service world to the affected individual, his/her family, the wider “scientific community” and the general public. It is important to note that recovery research is primarily concerned with people with serious and long-term mental-health problems, typically with diagnoses such as schizophrenia, bipolar (manic-depressive) and unipolar (depression) affective disorders. Psychiatry has continued to follow Kræplinian definitions of these disorders, where chronicity is named as a defining characteristic, especially for “schizophrenia” which was additionally long described as progressive and increasingly debilitating. This is one example of why I make the claim that medical psychiatry has been “owning” hope, because for over a century their definition-power has largely denied hope of improvement as possible for many “categories” of people. To the extent that anything hopeful has been offered by the medical empire, it has been for symptom stabilisation or the chance of a scientific breakthrough (usually presented as a “dramatic discovery”, like a new wonderdrug). Several decades ago, psychiatrist John Strauss and his colleagues at Yale University challenged this chronicity dimension through a series of longitudinal studies, concluding that people with schizophrenia can and do get better, even inside a medical92



therapeutic regime paradigm (Strauss & Carpenter, 1977), yet even more so through multi-faceted approaches (cf. Davidson & Strauss, 1995). These findings by Strauss and colleagues were originally dismissed by the medical psychiatry establishment, using a variety of arguments which continue to struggle to survive, despite massive accumulating evidence that recovery is “real”. Our research has identified four aspects of hope that are important experiences for individuals: believing me (trusting that my experiences are real, even when, or especially when, I am not sure myself); believing in me (that I can change); believing that my future can be different (that my life in general can change for the better); and believing that I can make a difference in my future (that some of what can be changed can be done by me, no matter how bad things seem today). Often these dimensions of hope hang together in a progressive chain, so that “believing me” and “believing in me” are necessary prerequisites before moving into the future and actual changes. How messages of hope (or hopelessness) are conveyed is at once complex and also uniquely experienced. In addition to lingering syndrome myths, which are both homogeneic and often include the chronicity-dimension, hope is also symbolically portrayed and realised (or not) via programmatic structures. For example, does “individual planning” actually promote forward movement? Are “residential options” organised in such a way that progression from a staffed group home to independent living is planned as achievable? Helen Glover calls mental-health professionals “holders of hope” (2002), a heavy burden for many to reflect upon. Often even small statements or acts become major turning points in the recovery process: Weird, it was a student who asked if I had any practical problems… at first I didn’t understand the question, but well, yes, that’s the kind of help I need. I’m very disorganised and then get sort of lost. It was very different than always talking about my sadness. I could focus on practical things, small things, and then I get less lost.

One interesting paradox we have discovered is that “rule-breaking” by service workers and professionals is often intertwined with the instilling of hope. Examples are lending money to clients or allow© The authors and Studentlitteratur

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ing more freedom than their court orders permit (see also Borg & Topor, 2003). Both acts may be against professional codes of expected behaviours, perhaps even illegal, yet send “I believe in you” messages. What makes this paradoxical is that rule-breaking seems to be experienced as hopeful because one is not supposed to be placing so much trust and faith in the individual, and this is why it is experienced as helpful.

“Therapeutic chemistry”? Somewhat related to understanding how hope is transmitted and experienced, “good chemistry” is often mentioned by people describing what is helpful in a relationship with service workers. An example: A bit funny really to say it’s her chemistry that I appreciate… since I’ve had so many, too many, wrong pills over the years… but it’s a word everyone understands… it’s not vibrations or auras, ’cause it’s not in the air… it’s inside me…

A word everyone understands? Perhaps. But what is actually occurring in such situations when a person experiences “good chemistry”? Direct follow-up questions gave us further phrases such as: “I know he somehow trusts me”… “She doesn’t just look at me, she really sees me”… “He listens, sometimes I feel he really understands me”. But these phrases are equally elusive in terms of understanding what is happening that leads to the expressed experiences of being trusted, seen or understood. Delving deeper, we found that being looked at is not the same as experiencing being seen, and we often find these meanings by examining other parts of what people tell us. Feeling “seen” appears to have very little to do with eye contact, and often seems to be something quite profound and related to having one’s humanity and uniqueness recognised and appreciated: This one therapist, she used to look intensely into my eyes. I always felt she was trying to see inside my brain. I wanted to scream sometimes, for her to see ME… I mean like my life, not just my sadness and problems. I wanted to scream, hey, I’m a person in here! There was

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this other one who worked there, I hardly knew her, but she came one day and said she really liked my new haircut. I don’t think my therapist even noticed…

Again, part of what we find are surprises and apparent paradoxes. An example: I can’t stand social workers who’ve learned somewhere to nod their heads at some empathetic angle and say they understand… they can’t possibly understand what my life has been like… it makes me angry… and scared! One of the first guys who really helped me said he was sorry, he couldn’t imagine what I was going through… he was apologising, like he was supposed to know, and he asked me to tell him more. I thought ‘at last!’ someone who’s honest!

Here the individual feels understood and even relieved, apparently paradoxically since the therapist transmits not understanding (what the person’s life has been like). Also, by sending apologetic signals, the therapist gives up some of the power ascribed to the helping role, including the notion that one should perhaps know everything. Here, the therapist’s not knowing is experienced as a sign of honesty and something positive.

Subjectivity: pathology or path? The view of subjectivity can be a source of relevant knowledge is no surprise to fields such as feminism or disability studies, but the place of subjectivity in mental health has been a more complicated struggle. This is especially so for people with schizophrenia diagnoses, where their subjective expressions are typically described in the clinical literature as characteristically fragmented, distorted, out of touch with reality and untrustworthy. Within a medical approach, subjective reports are of interest primarily to uncover signs and patterns of pathology. They are asked for, and listened to, but then fitted into diagnostic categories. Reworkings of the DSM (Diagnostic and Statistical Manual for mental disorders) continually strive to make diagnoses more reliable and universal. This may be a positive intention but also effectively advances the medical paradigm while simultaneously silen© The authors and Studentlitteratur

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cing subjective experiences as valid, as well as excluding searches for meaning and the uniqueness of the recovery process. At some deep level there lurks a suspicion that subjectivity is not real science (cf. Strauss, 1996). In addition, the quest for universality and syndrome homogeneity is likely to obscure the discovery of the unique steps and paths of the recovery process. Major findings such as learning about hope and chemistry would not have been likely if subjective experiences had not been attuned to from a different perspective (cf. Borg & Kristiansen, 2004; Strauss & Estroff, 1989; Strauss, 1996). Thus, exploring peoples’ everyday lives provides both a context to look for meaning and also provides the larger societal arenas for supporting the recovery process. This additionally helps to move craziness away from a pathology discourse. The role of subjectivity in mental-health reform has thus a somewhat different pattern than that of the intellectual disability field. Rethinking the role of lived experience and the place of the subjective voice has been important in recent mental-health reform efforts, whereas the subjective experiences of intellectually disabled people played a minor role in early reform efforts. In Norway and Sweden, for example, the first phase of reform efforts and related research focused on social integration and living condition improvements, and only in later phases began to explore everyday life experiences and personal meanings (cf. Kristiansen, Söder, & Tøssebro, 1999).

Owning reality and evidence Questions of hope, “therapeutic chemistry” and subjectivity are intrinsically linked to ontological discussions about the nature and form of reality, including what constitutes fact. “Evidence-based practice” is a contemporary example. Evidence-based practice is an approach used in such cases as the assessment and commissioning of service quality and related activities such as the training of human-service professionals. At first glance, most would agree that practice should be based on knowledge about what is effective and perhaps even efficient. But under closer scrutiny, as, for example, 96



the Norwegian psychologist Tor Johan Ekeland has pointed out, there are fundamental flaws in the assumptions, methods and intentions of evidence-based approaches (cf. Ekeland, 1999). The more finely tuned the evidence-finding instruments become, the farther they may be from telling us anything important about service relevance or quality. I contend that this is likely to be even more “true” in recovery research. First of all, recovery is a process, whereas most evidence-based approaches use outcome measures, at best including time-interval studies. This ignores (or in any case fails to inform us) about the course of progress, and overlooks what we know about what Strauss calls the nature of change (1996). Secondly, recovery processes show huge individual variation, whereas traditional ways of measuring improvement are standardised, based on representative samples and a homogeneity of expectations. Thirdly, recovery is timeconsuming and hugely complex in terms of the number of variables involved, whereas drug-effect experiments are focused, easy to control and are expected to occur within short time frames. Quite fundamentally, reliability is often an aim of many evidence measurements, whereas validity remains unchallenged. What will be considered real evidence is fundamentally an ontological question, directly related to discourse and paradigms, but also to issues of power and control (Kristiansen, 2004b). In terms of recovery, the question of evidence is crucial: At the clinic… my monthly visits, I give them my piss, my blood… fill out a checklist, and they ask a few questions, like did I get a job yet. They don’t know I have a new dog, have discovered I like gardening and that I feel better about myself… but they use these visits to adjust my meds.

Owning how evidence is determined has major consequences for how one’s situation is seen, interpreted and treated. Certain psychotropic medications, for example, are “proven” to be effective in reducing auditory and visual hallucinations, experiences which can be extremely distressful and even debilitating. Such symptom reduction can be measured, in fact quite reliably, often confirmed by the individual service recipient, and within a medical discourse one then concludes that the illness has been “stabilised”. Recovery, on the other hand, is not about being cured nor necessarily about © The authors and Studentlitteratur

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having one’s symptoms stabilised. On the contrary, most recovery researchers argue that we are talking about conditions that may not be curable and that the intention instead is to strive to learn to live with, manage and gain more control over such distressful experiences. The international “Hearing Voices” network, for example, offers an alternative discourse and approach to the notion of “auditory hallucinations”, including not using the term hallucinations, and learning to live with their voices through various strategies (see also Romme & Escher, 2000). What constitutes evidence is related to the larger “ownership” issue of defining what is real or not. As one women said: “It is terrifying when others tell me what is real, when I am not sure myself… even my fantasies are interpreted as symptoms instead of just pleasant dreams or hopes…”

Is turning better than looping? Goffman gave us the term “looping” nearly a half century ago (1961), a circular way of thinking such that everything the mental patient does or says is likely to be interpreted as part of his or her syndrome. Atypical behaviour and expressed feelings are perceived and named as symptoms, delusions, fantasies and defence mechanisms, and are explained as belonging to the illness and only to be expected. Sometimes even what most would consider “positive” actions are interpreted as pathological. One example is from a mother who lived in fear of having her children taken away from her by the child-protection services: When they come to visit, I always make sure the house is neat and clean… I leave the doors open to my bedroom and the children’s rooms, so they can see… they always ask to use the bathroom, and I know they look around. Later, when I read my case file notes, it said the house was ‘compulsively clean’ and ‘did not appear lived in…’

Such “no-win” locked circles become even more insidious at what might be called structural or societal levels of looping, where patterns such as poverty, unemployment and social isolation are seen as only to be expected if one has a mental-health diagnosis. An 98



even more bizarre example, which would be comical if it were not true and which often had unfortunate consequences for many individuals, is that whole decades went by when people who got better from schizophrenia were assessed as having been misdiagnosed to begin with (!), since schizophrenia by definition was incurable. The challenge to the syndrome descriptor of chronicity was too much for the field of medical psychiatry to understand, such that its response in the face of massive evidence was to declare a mistake in diagnosis, thus keeping the discussion within their own frame and discourse. It is important in recovery research to continue to explore the idea of breaking out of loop-thinking, while taking the distress of the person seriously. Is, for example, “turning” better than looping? I am referring here to the family of ideas known as the environmental turn (cf. Tøssebro & Kittelsaa, 2004) and the cultural turn (cf. Söder, 2004). I raise this issue because I have come to believe that very many people with long-term mental-health problems have some “real” craziness that needs and deserves individual attention and help. Given the current popularity of “turns”, I feel it essential to ask in whose interests all this turning is occurring, or more importantly, are such discussions helpful and who may be at risk? In some interpretations of the social model, for example, the impairment is deemed of much less importance than the societal roots of oppression and exclusion. For at least some individuals with mental-health distress, this is certainly not the case. In fact, the impairment–disability dichotomy seems to be of little interest or use (cf. Shakespeare, 2004), and not only in the mental-health field. Perhaps more worrisome for some might be the idea that mental illness is only and wholly a social construction, or something to be proud of and even celebrate, which is some of the discourse associated with the cultural turn. Notions of turning are academically challenging, and probably often important for change, but can also be fascinating games (that are naughty and fun?). Turns may, in fact, be a form of spinning. In any case, when suggesting that categories should be disrupted or broken down, we might do well to ask who will actually be celebrating and who will be left behind, perhaps to become invisible and neglected in new ways. © The authors and Studentlitteratur

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Recovery: ambiguous imagery, magnets and movement destined to splinter? This last section offers some reflections on the recovery movement, its dilemmas and future. To begin with, “recovery” is an ambiguous term with mixed associated imagery and connotations (Kristiansen, 2003). The term typically invokes an understanding of getting better to the extent of being cured. This is not only misleading but also rather ironic since it is the medical approach that recovery research tries to stand in contradiction to. In more general use, recovery refers to regaining a present state (as in recovering one’s balance, recovering the national economy, or recovering one’s reputation). This can be an appropriate association for some individuals, who regain control over their lives or distress, but for others it is not a question of returning to a previous state or situation, so again it is somewhat misleading. Most unfortunate, in terms of imagery associations, is that in the UK “recovery” are the people you contact if your car has been crashed and needs to be towed away! The Scandinavian languages have not been more successful. The English word “recovery” is often used, perhaps to associate oneself with international efforts (Jensen, 2004), whereas in Norway, both “betring” (betterment) and “meistring” (mastery) are in use, although the first can easily invite to medical-thinking, and the latter to traditional rehabilitation discourses such as skills-training. It can be argued that terms which lack clarity also lack utility, but unclear or contested terms do perhaps have a different kind of use. One use is that new terms or slogans can serve as magnets for alliances (Kristiansen, 1999), attracting some and repelling others. This can lead to the formation of new networks and new collaboration. A second use is the stimulation of debate and further inquiry which occurs as a result of the diffuseness of the terms, and then can lead to results such as discovering inherent weaknesses in underlying assumptions or strengthening a theory base, etc. Certainly, this is what has happened with terms such as normalisation, integration, empowerment and social model (cf. Kristiansen, 1999; Shakespeare, 2004; Söder, 1992), all of which have given rise to tremendous excitement, concern and discomfort, and hopefully some forward steps in social science and related reform efforts, in part because of the roominess of the terms. 100



Recovery is a phenomenon, a personal process, a field of research and also an international alliance or social movement of sorts. The hope of the international recovery movement lies in its partnership between people with lived experience and researchers interested in learning more about what is helpful in ways that challenge traditional ideas of progress and evidence, and who learn together with people with lived experience. The worry, and one unfortunately quite probable future scenario, is that recovery research will follow the trajectory of other similar social movements, moving from its now passionate and promising phase toward deeper explorations that can in turn evolve into internal disagreements that cannot be healed, leading to rifts, divisions and its eventual demise. I am one who struggles to remain hopeful.

References Beresford, P. (2000). What have madness and psychiatric system survivors got to do with disability and disability studies? Disability and Society 15, 1: 167–172. Borg, M. & Topor, A. (2003). Virksomme relasjoner [Helpful relationships]. Oslo: Kommuneforlaget. Borg, M. & Kristiansen, K. (2004). Recovery-oriented professionals: helping relationships in mental health services. Journal of Mental Health 13, 5: 493–505. Davidson, L. (2003). Living outside mental illness: qualitative studies of recovery in schizophrenia. New York: New York University Press. Davidson, L. & Strauss, J. (1995). Beyond the biopsychosocial model: integrating disorder, health and recovery. Psychiatry 85, February: 44–54. Deegan, P. (1988). Recovery: the lived experience of rehabilitation. Psychosocial Rehabilitation Journal 11, 4: 11–19. Ekeland, T.J. (1999). Evidens-basert behandling: kvalitetsikring eller instrumentalistisk mistak? [Evidence-based treatment: quality assurance or instrumental mistake?] Tidsskrift for Norsk psykologiforening 36: 1036–1047. Glover, H. (2002). Developing a recovery platform for mental health service delivery for people with mental illness/distress in England. Working paper. London: National Institute of Mental Health. © The authors and Studentlitteratur

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Goffman, E. (1961). Asylums. Engelwood Cliffs, NJ: Penguin Books. Harding, C. & Zahniser, J. (1994). Empirical correction of seven myths about schizophrenia with implications for treatment. Acta Psychiatr Scand. 90 (suppl. 384): 140–146. Jensen, P. (2004). Recovery på dansk: å overvinde psykosociale handicap [Recovery in Danish: conquering psycho-social disability]. Århus, Systime academic. Karp, D. (1996). Speaking of sadness: depression, disconnection, and the meanings of illness. Oxford: Oxford University Press. Kleinman, A. (1988). Rethinking psychiatry: from cultural category to personal experience. New York, Free Press. Kristiansen, K. (1999). The impact of normalization and social role valorization in Scandinavia. In: Flynn, R. & Lemay, R. (Eds). A quarter century of normalization and social role valorization: evolution and impact. Ottawa, University of Ottawa Press, pp. 395–406. Kristiansen, K. (2003). Recovery research in mental health: some reflections through a gendered lens. Paper presented at the Nordic Network for Disability Research (NNDR) conference, October, Jyväskylä, Finland. Kristiansen, K. (2004a). Erfarenheter från arbete med kvinnor i ’mentalvårdslandet’ [Learning together with women in ’mental health land’]. In: Barron, K. (Ed.) Genus och funktionshinder [Gender and disability]. Lund: Studentlitteratur, 155–181. Kristiansen, K. (2004b). Madness, badness, and sadness revisited: ontology control in mental health land. In: Kristiansen, K. & Traustadóttir, R. (Eds). Gender and disability research in the Nordic countries. Lund: Studentlitteratur. Kristiansen, K., Söder, M. & Tøssebro, J. (1999). Social integration in a welfare state: research from Norway and Sweden. In: Flynn, R. & Lemay, R. (Eds). A quarter century of normalization and social role valorization: evolution and impact. Ottawa: University of Ottawa Press, pp. 411–424. Romme, M. & Escher, S. (2000). Making sense of voices. London: Mind Publications. Shakespeare, T. (2004). Social models of disability and other life strategies. Scandinavian Journal of Disability Research 6, 1: 8–21. Strauss, J. (1996). Subjectivity. Journal of Nervous and Mental Disease 184, 4: 205–212.

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Strauss, J. & Carpenter, W.T. (1977). Prediction of outcome in schizophrenia. Archives of General Psychiatry 34: 159–163. Strauss, J. & Estroff, S. (1989). Subjective experiences of schizophrenia and related disorders. Schizophrenia Bulletin 15, 2: 177–178. Söder, M. (1992). Normalisering og integrering: omsorgsideologier i endring [Normalisation and integration: care ideologies in change]. In: Sandvin, J.T. (Ed.) Mot normalt? Omsorgsideologier i forandring [Care ideologies in a state of change]. Oslo: Kommuneforlaget, pp. 41–65. Söder, M. (2004). Why head-counting? In: Tøssebro, J. & Kittelsaa, A. (Eds). Exploring the living conditions of disabled people. Lund: Studentlitteratur, pp. 211–228. Trivedi, P. & Wykes, T. (2002). From passive subjects to equal partners: user involvement in research – a review. British Journal of Psychiatry 181: 468–472. Turner, D. (2001). Recovery in NSF: report to the National Schizophrenia Fellowship on the recovery approach. Llandrindod Wells, Powys, Wales. Tøssebro, J. & Kittelsaa, A. (2004). Studying the living conditions of disabled people: approaches and problems. In: Tøssebro, J. & Kittelsaa, A. (Eds) Exploring the living conditions of disabled people. Lund: Studentlitteratur, pp. 17–43.


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5 Perception and practice

5 Perception and practice Helge Folkestad

The residential institutions for people with intellectual disabilities in Norway closed in the early 1990s. Individuals now have their own homes, often located in buildings containing three to five apartments and an adjacent staff base. This chapter reports on a fieldwork-based, grounded theory-inspired study of interactions between residents and staff in what has become the typical solution in accommodation for adults with intellectual disabilities not living with their families (Folkestad, 2004). Individuals have their own apartment, but their relationship to the other tenants is rather special. In many ways they have closer connections than other neighbours have, but more distance than members of a single household would have. They pay rent for the apartment that has been administratively provided for them. While the residents are at home, there are also staff members on hand with responsibilities for services. Residents have little or no choice in whom they live near, nor any choice of staff. Thus, such apartments are, when everything is taken into account, still a “place” in the system (Tøssebro & Lundeby, 2002). The scene is pre-set for a meeting between those who live here because they need services and those who are hired by municipal social services to provide the help, guidance and/or care involved. Conceptions about intellectual disability, together with the everyday focus on needs for assistance and what residents cannot do for themselves, have an impact on the practical organisation of everyday life that is initiated and upheld by staff (Folkestad, 2004). Residents’ needs for service are the legitimisation for the presence of staff, taking it for granted that staff are more competent than residents. Interactions, then, take place in what is simultaneously everyday life for some and working hours for others.


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“It’s our job to make it work for them to live here” Staff efforts surround the residents’ everyday life; staff members’ work determines how residents are actually met and treated. One staff member said: I suspect that the municipal administration expects, since they’ve built a house for those who come from their parents’ homes, that it’s our job to make it work for them to live here.

Work takes place in the homes of individuals, dealing with the commonplace situations and tasks of everyday living. What input the staff should provide is not a given, rather they have to decide what measures certain situations call for, and accordingly how they should act. Though much is left up to the staff participating in an actual situation, their choices are guided by the maxim that residents should participate in the tasks at hand. Staff say that the job is “to be there and to help them when they need us to” – and that “they get to do what they can, and only get the help they need”. One informant among the staff said: I see our work now more as services than before. The institutions were in a way the staff’s domain. Now I feel that we go in and assist more, at least I try to enter into more collaboration. Of course, we still steer things a lot too, but it’s sort of different.

This informant is privy to the discourses of self-determination, but also to the fact that relationships between her and residents are asymmetrical. The steering she talks of is practical help and pedagogical efforts to reduce residents’ dependency on staff. This, however, also has another side to it. How things should be done, and how life should be lived, is simply a matter of course to us. So, if residents don’t live up to these standards and norms, staff will intervene to maintain what they perceive to be normal ways of doing things (Jensen, 1992; Sandvin et al., 1998). Behind this is rehabilitation thinking – the idea that staff members are there to assist residents in fending for themselves. Implicitly, residents are obliged to make efforts to (learn to) cope as well as possible – to be as “non-disabled” as they can. Rehabilitation thinking has roots in a normalcy/ deviance discourse of disability (Solvang, 2000). According to the 106



politics of normalisation, statistical normality influences how housing is focused and expectations about how everyday life for people with intellectual disabilities should be lived.

A twofold strategy The object for staff is to provide tailored help – enough but no more than necessary – to individuals doing the activities of daily living. In line with the goal that residents should have the opportunity to participate in the activities of daily living, staff provide assistance by framing the problem or task at hand. In immediate conjunction with this, they provide and manage a space for the resident’s initiatives and actions toward the task, narrowed down through framing. Framing reduces uncertainties and focuses the central task. At the same time, providing or allowing space for a resident’s action does not preclude her/his chance to take part in and influence solutions. Framing involves various degrees of imperatives and detail. The space allowed may also vary as to time, size and according to the complexity of tasks. One way of looking at the variation is shown in figure 1. Space allowed/provided narrow

wide

detailed

paternalistic steering

steering through predesigned procedures

loose

taking over

creating possibilities for selfdetermination

Framing

Figure 1 Practice as it follows from framing and allowing/providing space for action.

This view of detailed framing and restricted space for initiatives sees self-determination as the a priori value or central tenet for practice. However, in many cases it would not be the best-tailored solution to leave someone to her/his own devices. Therefore, it is sometimes necessary to rethink the former evaluation and to look at things differently, as seen in figure 2. © The authors and Studentlitteratur

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Space allowed/provided narrow

wide

detailed

making tasks manageable

steering through predesigned procedures

loose

taking over

neglecting needs

Framing

Figure 2 Practice as it follows from framing and allowing/providing space for action – revisited.

Detailed framing and rather limited space for action are sometimes necessary calibrations of the demands which are to be put on a resident’s responsibility for the totality of a task. When viewed this way, the steering applied by staff represents pedagogically tailored assistance. Decisions of how much and what kind of help is needed, and how much space can be handled depend heavily on the definition of the situation. It requires a reflective practitioner to decide a course of action that supplies the resident with challenges s/he can strive to manage and does not pose unreasonable demands on him/ her. Staff use their close knowledge of the person and their sensitivity towards what the situation entails when they decide what the actual constellations are. Their interpretation of the situation is tempered by their impressions of the resident involved. As a feature of familiarity, and as support for decision-making in situations that arise in the course of daily life, staff coin and share characterisations of the individual residents. These pictures are embedded in widely held representations of people with intellectual disabilities, but are individualised and cast in the local context. Such characterisations focus either on difference or on similarity between people with intellectual disabilities and others; and characterisation is orientated either toward what is a problem for the resident, or toward what creates problems and puts pressure on staff. From the possible combinations of focus and orientation, four styles of institutionalised practice emerge: therapeutics, disciplining, cooperation and service. Each style affects interactions in a typically different way. Before dealing with these styles of practice, I will first focus on characterisation.

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Characterisation In exchanges during day-to-day work, staff make comments about residents in ways thought to characterise them. Characterisation is passed on in oral reports among the staff, and when repeated regularly this creates and sustains social constructions of individual residents. Such constructions may express close knowledge of the person. But this also has a conservative effect when characterisation creates a locked picture of that person. Then there is also a risk of cementing practice toward that person. The pictures drawn by characterisation of individual residents are multi-faceted and diverse, sometimes even inconsistent. Characterisation may have its roots in a focus on a resident’s status as a person with disabilities, or this may to a varied degree be overlooked. Characterising is not only linked to the individual, it is also categorisation. Even characterisation in positive terms carries implicit comparisons that basically point back to difference. For example, Sally (a staff person) has discovered that Richard (a resident) likes it when she speaks to him in a usual everyday fashion. Highlighting this point creates Richard as different from those she would, without a second thought, speak “normally” to. Ambivalence and dilemma arise when staff members have to strike a balance between ideas about self-determination and conceptions of needs due to intellectual impairment. As manager, Susan insisted that the staff should always “ring the doorbell and recognise and respect the apartment as the person’s own home”. When, however, doubt arose about whether or not Rebecca had remembered to get things out of the freezer for her dinner, Susan entered the apartment while Rebecca was at work and saw to it. She “saved the day”, as she put it, pre-solving a potential problem by overstepping the private boundaries she had pointed out to staff. By making this choice, she highlighted a specific way of characterising Rebecca – namely that she is forgetful and needs help that makes it necessary for staff to take over her responsibilities. This characterisation was chosen at the expense of seeing Rebecca as an autonomous tenant. A complex interplay exists between how situations are defined, residents are characterised and staff choose to act or react. The point is that characterising has implications for


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choice of action, and that choices of action validate certain characterisations. Characterisation is part of what is set forth as causal explanations of events – in this way it also calibrates expectations. To some extent, characterisations give an insight into the kind of readiness that staff have toward particular residents. All in all, characterisations are shorthand images built from observations, moral evaluations, attribution and local folklore.

Social representations Though characterisations are made of individual residents, they are also embedded in more generalised conceptions about people with intellectual disabilities. The larger frameworks for characterising are the social representations that exist. By social representations, we mean a set of concepts, statements and explanations originating in daily life in the course of inter-individual communications. They are equivalent, in our society, to the myths and belief systems in traditional societies; they might even be said to be the contemporary version of common sense (Moscovici, 1981, p. 181).

Social representations form the backdrop for stories and observations that staff share, and are the frame of reference in which problems and tasks are formulated. In this way, social representations are helpful in interpreting the surrounding world, they provide group members with a common identity and make them more secure in their interpretations and choices of action. The ways that staff characterise individual residents are embedded in representations that contain contradictory “truths”. People with intellectual disabilities should have their own homes, but we have to build in common space in order to avoid isolation and loneliness; the ambition is individual services but the living arrangement has a group(ed) format; we stress self-determination but expect staff input.

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How characterising typically influences interactions The figure below illustrates the interplay between characterising and choice of action, and is presented as a point of reference for the remarks that follow. Characterising Difference

Focus

Toning down difference

Orientation (Whose problem preoccupies staff?)

Resident

Staff

Resident

Staff

Staff’s actions in connection to resident’s practical tasks:

steering

taking over

sharing

non-involvement

Space given to residents’ initiative:

situational; moderate to narrow

generally narrow

situational; moderate to wide

generally wide

Reluctance/ resistance seen as:

confirming difference

threat to discipline

demonstrating self-determination

expressing opposition

Style of practice

Therapeutics

Disciplining

Cooperation

Service

Figure 3 The impact of characterising.

Focus and orientation On the one hand, characterisations focus on the difference of people with intellectual disabilities compared to others. Characterisations that point to diagnoses do this. On the other hand, characterisation can tone down this focus on difference – for example, a man with a close follow-up due to challenging behaviour was characterised as an active fellow. The first line of the table is based on these two options. Staff need to create an understanding of the actual situation in order to have a basis from which to decide what sort and what amount of help they should provide. The decisions they make are not, however, based only on unique situational qualities. A © The authors and Studentlitteratur

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wider background is needed, and characterisations provide some of this. Not that characterising is necessary in it self, but a definition of the situation includes the “whom”, “what” and “where”; and first off, characterisations represent a simplification as to “whom”. The next line in the table is about orientation. It may well be that there really is a continuum here, but the poles at least are an orientation either toward what is a problem for the resident, or toward what creates problems for/pressure on staff. Orientation impacts on what kind of characterisation is formulated and passed on. For example, Ruth, who had recently moved into her apartment, was very persistent in gaining contact with staff. This could have been read as both “a need for contact and comfort in a new life situation” and as “unlimited demand on staff time”. Although some comments made by the staff indicated the first of these understandings, the latter became the most prominent one. Staff were primarily preoccupied with the workload Ruth represented, and this became the basis for the characterisations they shared of her. They then implemented rules of contact, among other things wanting to teach her to wait her turn. The kinds of characterisation that are used show orientation. In this way, characterising also influences the “what” in situational definitions. The mechanism is that a standardised image of the resident also activates a standardised response. So, characterisation activated in a given situation will, through its focus, have an influence on the conception of “whom”, and, via orientation, of “what”. This is how characterising plays a role in defining the actual situation, and thus has an influence on how staff choose to act and react. Characterising becomes important – critical, but not causal – to how the situation is handled.

Four styles of practice The focus on difference implicitly insists that the root of the problem is within the individual. From this perspective, staff formulate problems in terms of lack of skills or of challenging behaviour on the part of residents. Where, in terms of orientation, the weight is put on how this creates problems for the resident, training and therapy are the chosen response. I call the style of institutionalised practice 112



that emerges therapeutics. A problematic implication here is the risk that the activities of daily living are referred to in a special vocabulary and thus change character. Meals become situations where training takes place. This potentially social situation is invaded by a secondary, instrumental undertaking. Similarly, in other activities, staff become concerned with steering what goes on and how things get done. This legitimises their competence as therapists (see also Sandvin, 1992). An instrumental practice develops; staff take on a pedagogical role that demands professional distance. The underlying principle is paternalism, taking it for granted that staff must be in charge. The debates are not about whether to intervene or not, but about how it should be done, and about what the outcome should be – what the resident should be brought to do. Activities are planned out; the day follows schedules and routines that are enforced cooperatively by staff. The activities may easily become the centre of attention, rather than the residents. Staff do not expect the resident to be able to manage the activities in question, and invitations – if any – tend to be put in negotiative terms (“… then we can do x afterwards”). Staff report: “how it went while I had him”. In this style of practice, there is little space made available for initiatives by the resident. Finally, signs of reluctance or resistance to suggestions and prompts from staff are seen as confirmation of the difference that is essentially understood to be at the root of the resident’s problems. On the other hand, lack of skills or challenging behaviour can be understood mainly as a strain on staff. Here the focus on difference is still dominant, but the orientation of staff has shifted toward themselves. I have termed this second resulting style of practice disciplining. Immersing oneself in practical business is one way of avoiding the inconveniences of having to interact with the resident (Christensen and Nilssen, 2002). Taking over the mundane tasks develops from this alternative. Discontinuous contact, for example because of part-time positions, may have this effect. A comment made by staff, that some “are here so seldom that they’d rather just stick with the cleaning”, illustrates the point. To the extent that the resident is allowed to participate in the activities of maintaining the apartment and so on, staff keep the initiative and provide mainly imperatives as guidance. Positive remarks after such participation are about how good the resident is at “helping out”. Staff decide © The authors and Studentlitteratur

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how things should be done and what is a satisfactory result. There is little room for any initiative from the resident. Stern rules about behaviour are enforced, and among staff there is a demand for consequent reactions. This is seen as an appropriate response to what is understood to be challenging behaviour. Staff are on their guard toward the resident, they observe and are ready to intervene and to enforce planned procedures. This alert toward a possible need to put particular procedures into practice has the effect of reducing other kinds of interaction with the resident and of increasing interpersonal distance between staff and resident. This is partly a result of the fact that the procedures are strenuous work which inhibits other kinds of interaction afterwards. But also partly that, because of this alert, staff stay clear of the resident in order not to provoke confrontations. The third style of practice can be labelled cooperation; it carries a focus that instead tones down difference. Characterising will then carry positive descriptions of what the resident is able to do. The person’s need for assistance is seen only as a difference of degree, not as essentially different from the needs of most people. Here the orientation is toward the resident; staff try to assist in the activities of daily living by sharing the labour and doing things together with the resident, and staff try to find ways to help without taking charge. Initiatives from staff then tend to be invitations and suggestions, and there is ample room for initiatives by the resident. The resident experiences both help and acceptance. Protest or reluctance are seen as appropriate reminders and gratifying signals of independence. I have called the final style of practice service. Here the resident is not seen as different per se, though a distance is kept due to the insecurities of staff. It is not so much the level of functioning in itself that is the determinant, but that the resident sets boundaries for contact with staff, without staff interpreting this as psychiatric problems or essential difference. Staff may express understanding when the resident “doesn’t like us to nag”, that the resident “likes to do things her/his own way”, yet they still feel uncomfortable when in contact with her/him. It seems that staff have trouble establishing and maintaining a relationship with the resident. One way to handle problematic relationships is to maintain distance and legitimise this in the vernacular of service – providing only the 114



services that are explicitly asked for. The resident may contact staff but is otherwise left to her/his own resources. However, since this person is a resident, staff still feel a responsibility. They respond to this by providing reminders about things that should be taken care of. Otherwise, contact is limited as long as problems do not arise. Characterisations downplay difference but underline that this person is “difficult” to make contact with or to have dealings with. Reluctance and resistance are interpreted as opposition. The perceived independence is seen as a legitimate reason to limit contacts and to avoid the problematic relationship. The danger of neglect is imminent. The four styles of practice outlined here should be understood as ideal types, as simplification. Residents may experience, and we may observe, that different members of staff use different styles toward them; that the same member of staff may use various styles in various situations with the same resident; or that a certain style is the most typical toward some residents. The preparedness, which characterisations signal, has an influence on the breadth of space allowed for initiatives by residents. Whether a close follow-up is seen as helpful organising or as restriction depends on what kind of characterising is activated in a given situation. The same holds true for whether non-intervention and a wide space are seen as an opportunity for self-determination or as neglect. Focus and orientation are implicit in the styles of practice that staff choose and they are indicated in the characterisations that staff put forward in the actual situations. They are not, however, necessarily the result of open discussions or explicit formulations. They might not even be the subject of conscious reflection or debate. Characterising still seems to work “for all practical purposes” in creating a sufficient basis for decision-making. The important point I have been trying to make is the insight provided by the Thomas Theorem: “If men define situations as real, they are real in their consequences” (Merton, 1995, p. 384). Characterising very much determines how situations in daily practice are defined, and leads to choices of action that realise the focus and orientation that the characterisations implicitly hold. As a certain style of practice becomes the typical one, the stories told about residents will be ones that uphold the contingent type of characterisation; practice loses its situational fluidity for framing and providing space. © The authors and Studentlitteratur

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Concluding remarks The reigning characterisations of residents aid staff in defining situations and legitimising actions. We cannot assume that superimposed standards or guidelines will necessarily change this. We can assume that staff are striving to solve the problems they locally – whether tacitly or explicitly, and more or less collectively – recognise. Supervision should help staff formulate problems explicitly, steer their attention to the impact of characterisation and draw attention to the input from residents. Bringing focus and orientation to the fore, for reflection and discussion, provides potential for new and critical questions about current practice. New ways of talking about residents open up possibilities for new ways of working.

References Christensen, K. & Nilssen, E. (2002). Livet i bofellesskap. Midtvejsrapport fra et forskningsprojekt [Life in group homes. A mid-term report from a research project]. SOR-Rapport 48: 4–12. Folkestad, H. (2004). Institusjonalisert hverdagsliv. En studie av samhandling mellom personale og beboere i bofellesskap for personer med utviklingshemning [Institutionalised everyday life. A study of interactions between residents and staff]. Bergen: Høgskolen i Bergen – Rapport 1/2004. Jensen, K. (1992). Hjemlig omsorg i offentlig regi. En studie av kunnskapsutvikling i omsorgsarbeid [Care at home by municipal services. A study of the development of knowledge in professional care]. Oslo: Universitetsforlaget/PFI. Merton, R.K. (1995). The Thomas Theorem and the Matthew Effect. Social Forces 74: 379–424. Moscovici, S. (1981). On social representations. In: Forgas, J.P. (Ed.). Social cognition. Perspectives on everyday understanding. London: Academic Press, pp. 181–209. Sandvin, J.T. (1992). Fra særomsorg til særlig omsorg – om organiseringen av kommunale tjenester for mennesker med psykisk utviklingshemning [On the municipal organisation of services for people with intellectual disabilities]. In: Visnes, T. (Ed.). Fra 116



særomsorg til særlig omsorg [From special-care institutions to taking special care]. Oslo: Universitetsforlaget, pp. 61–93. Sandvin, J.T., Söder, M., Lichtwarck, W. & Magnussen, T. (1998). Normaliseringsarbeid og ambivalens. Bofellesskap som omsorgsarena. [Normalisation work and ambivalence. Group homes as an arena for care]. Oslo: Universitetsforlaget. Solvang, P. (2000). The emergence of an us and them discourse in disability theory. Scandinavian Journal of Disability Research 2: 3– 20. Tøssebro, J. & Lundeby, H. (2002). Statlig reform og kommunal hverdag: Utviklingshemmetes levekår 10 år etter reformen. [National reform and municipal realities: living conditions of people with intellectual disabilities 10 years after reform]. Trondheim: Institutt for sosialt arbeid og helsevitenskap, NTNU.


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6 Management and professionalism in social-educational care work

6 Management and professionalism in socialeducational care work Jesper Holst

Having spent some years in Mongolia and Nepal working in social and special educational problem areas, I was lucky enough on returning to Denmark to become involved in a communicative development project for people with severe intellectual disabilities and without verbal language. This meant reacquainting myself with an area I had previously followed closely and provided me with an opportunity to experience the developments in social-educational care work in housing for people with severe intellectual disabilities that had taken place since the Act on Social Services came into force in 1998. This article will focus on some of the experiences and considerations that arose from my reacquaintance with the area. These include the development of the physical surroundings of the housing facilities and the relations between social education and management, as well as trends in the development of the professionals’ relationship with residents.

The Service Act and a development project In 1998 the Act on Social Services came into effect. In the area of disability, the Act – also known as the Service Act – represented a new view of the normalisation efforts that have characterised Danish social policy since the 1950s. The first phase involved the normalisation of formal living conditions for people with disabilities by liberating them from segregating laws, structures and settings, whereas now, in the second phase, the emphasis is on ensuring that people with intellec© The authors and Studentlitteratur

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tual disabilities are provided with improved opportunities to influence their own lives by having access to self-elected, identitycreating and meaningful social activities (Ministry of Social Affairs, 2003). This overall shift in intention could be seen as an extension of a professional and societal development in which traditional concepts of normalisation have lost their meaning, partly because they have already influenced the development and partly because the practical realisation of the traditional concept of normalisation has raised new problem areas and themes for discussion, such as quality of life, the right to be different, and empowerment, as well as the right to participation and co-citizenship (Söder, 1992). During the period 1998–2002, a group including the Social Development Centre (SUS) and COWI A/S carried out a study evaluating the implementation of the Service Act’s intentions in the area of disability. In 2002 a report was published with the results of this evaluation (Ministry of Social Affairs, 2002). On the basis of this report, it was concluded that the process of implementing the intentions of the Service Act was one of inconsistency and involved minimal participation by residents, who were incapable of expressing their own needs and wishes. For the notions of inclusion, self-determination, participation and co-citizenship to be taken seriously, there is need for a development that will promote a dialogue between the group of residents in question and their surroundings. It is necessary to develop methods of social interaction and communication that will enable the residents to handle and benefit from the new position they acquired when the Service Act came into force. This challenge has been taken up by the Social Development Centre (SUS) in conjunction with seven housing facilities in two Danish counties. With the support of the Social Development Centre (SUS), the seven housing facilities have formulated and initiated development projects. These projects are followed up by research that provides a continuous feedback on the developmental work, and ensures that the forms of social interaction and communication developed during the projects can be used in other contexts than those in which they were developed. Alongside the development and research, there are various other activities such as seminars, reference-group and network meetings, 120



focus-group interviews, visits to the participating housing facilities, video recordings and systematic observations of the everyday life of participating residents. The project is still only half completed, so it is too early to present any conclusions or results, nor should this be attempted. However, my visits to the facilities and meetings with staff and residents have outlined some of the framework, dilemmas and topics for discussion that currently characterise the professional understanding of the staff, as well as the frames and types of understanding that shape the lives of the residents.

Interior and buildings The seven participating residential facilities differ as to their constructional framework and the layout and arrangement of their buildings, and some of the facilities are in the process of building extensions or refurbishing existing buildings. These differences, and the fact that some of the facilities require extension and refurbishment, can be discussed in the light of three factors. The first could be called “the hospital-like environment”. Some of the houses within the facilities were built and furnished to accommodate the care needs of severely physically and intellectually disabled residents, taking precautions not to put an unnecessary strain on staff. These houses have to be spacious enough to accommodate wheelchairs, lifting devices and so on. This gives some of the houses hospital-like characteristics such as broad straight corridors, large shared bathroom and toilet facilities, and private rooms with adjustable beds, lifting devices and enough room for staff to provide the necessary care. The hospital-like furnishings are a result of having to take the needs of both residents and staff into consideration when it comes to providing care. The second factor could be called “the prison-like environment”. The seven participating facilities have made very different arrangements to enable staff to control the comings and goings of the residents. Some of the facilities have installed coded door locks to control who enters and exits the building. Moreover, the norms and attitudes to residents’ private rooms vary greatly among the seven facilities. To put it harshly, these attitudes vary from refuge to © The authors and Studentlitteratur

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prison cell. In some places the private rooms are seen as the residents’ own private sanctuaries, where staff or other residents should not enter without being invited or asking permission. In other places private rooms are used as a form of imprisonment where the comings and goings of both residents and staff are closely monitored and regulated. One of the facilities involved in the study was purpose built to cater for residents diagnosed with autism and is designed to promote routine and a calm, untroubled atmosphere. This has been achieved by building houses where residents are divided into small groups of two to three people per housing unit, and the units are situated and designed so that a disturbance erupting in one place will not spread to the other units in the house. These prison-like conditions are justified by reference to the residents’ need for security and safety, as well as the financial savings resulting from the technological solutions provided by surveillance and warning systems, as the following shows: One of the areas where the Knowledge and Dissemination unit will soon host a theme day is ‘Surveillance and warning systems’. It will be a great advantage to reallocate funds for employing night staff to educational activities during the day (Hjort-Pedersen & Nørager, 2002, p. 5).

The third factor could be called “the historical environment”. The layout of the seven participating facilities reflects the fact that they were built in different historical periods and subject to changing care ideologies. The oldest of the facilities was taken into use in 1969, and was one of the first facilities built with the aim of moving socially wellfunctioning residents out of one of the big central institutions. This housing facility consists of fairly large communal areas, very small private rooms and shared bathroom facilities. On average, the private rooms are 8 m2 in size. The rationale behind this design was reportedly an attempt by the architect and planner to prevent more than one person from being accommodated in each room. This housing arrangement can be seen as partly inspired by the communes and shared housing that became popular in the 1960s, and partly as a reaction against the dormitories of the central institutions. 122



The housing environments of the other project participants were all built as a consequence of the dismantling of the large central institutions in the 1980s, and are typically divided into houses accommodating four to six residents. The houses have a joint entrance and are dominated by communal areas consisting of a living room, kitchen, toilets and often also offices and other staff facilities. The residents’ own rooms of about 15–20 m2 in size make up a third of the house area. This layout is presumably based on a compromise between ideas of normalisation and the actual practical limitations inherent in dealing with people with high support needs. It should be pointed out that the seven participating facilities are managed by the county authorities and are relatively large; the smallest of them is a facility of 14 residents, while the larger ones house around 60 residents and employ around 100 professionals. In contrast to the smaller housing facilities of the local municipal authorities, the county facilities typically house long-term residents who require extensive assistance with general day-to-day functioning or levels of care, attendance and treatment that cannot be provided elsewhere (Ministry of Social Affairs, 1998). The design of the facilities emphasises the importance of family-like surroundings, a sense of community and joint activities. They are basically shared houses for people who have not chosen to live together. Social relations in the housing facilities are administratively regulated (Tideman, 2004), which means that staff and fellow residents are chosen by an administration. This has a number of consequences. Daily activities and social life take place mainly in the communal areas, whereas the residents’ rooms are a place to withdraw to or enjoy solitude when communal life becomes too much. It is primarily in the communal areas that residents interact, with each other and with staff. As it is through the interaction with staff that residents have the opportunity to draw attention to their needs and wishes, and as it is staff members who have the power to meet these needs and wishes, residents apparently see their fellow residents as competitors in their efforts to attract the attention of staff. A striking observation of daily life that has emerged from the study to date is that relations between residents are mostly serial, meaning that they experience physical proximity but with no apparent interaction nor any wish to spend time together. It is also © The authors and Studentlitteratur

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striking that residents will withdraw to their rooms if there are no members of staff available in the communal rooms. The layout of these facilities represents an attempt to express the first step on the road to normalisation of living conditions for people with intellectual disabilities; however, this emphasis on an administratively regulated community seems to promote control and forms of interaction reminiscent of those same institutions that, according to the intentions of the Service Act, should by now have ceased to exist. As previously mentioned, some of the seven participating housing environments are currently in the process of extending or refurbishing their existing buildings. One common factor is the wish to redirect the focus from a community orientation to an individual orientation by expanding the private rooms of the residents and reducing the amount of space allocated to communal areas. The aim is for each resident to have his or her own little flat with a private entrance. In recent years, Denmark has experienced the beginnings of ghettoisation. In some counties there is a tendency to amalgamate geographically scattered small housing units into larger facilities, where people with intellectual disabilities can live in their own flats but with each other as neighbours. This development, and the basis for it, have given rise to debate. On the one hand, it is claimed that the erection of large housing environments with people living in their own flats improves the quality of life for residents. The reason put forward is that the role of the professionals has been redefined because the new structure of the housing environments emphasises the fact that staff are working in the private homes of the residents. At the same time this gives the residents an opportunity to create a social network among themselves, thus avoiding the social isolation that often characterises life in small housing environments, as physical integration in the local community does not prevent the so-called social segregation of daily life (Gustavsson, 1992). On the other hand, some see this creation of ghettos as marking a return to the large institutions, and seek the explanation in financial considerations, as well as in staff working conditions which are often much more strenuous in the smaller housing facilities; strenuous because staff in small facilities often work alone and are there-

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fore unable to deal with any emergencies that require them to give their full attention to a single resident. The seven county facilities participating in the project are all to varying degrees characterised by the “hospital-like”, the “prisonlike” and the enforced community environments with administratively created relations prevailing, at the same time as being homes for the residents and a workplace for staff. So, in spite of the current changes in building and structuring following the higher priority given to the more independent housing of the individual resident by providing them with their own flats, the question remains of whether the tendency to establish ghettos and large-scale operations will perpetuate a type of routinised life, controlled administratively and by staff, thereby making it institutional, and thus contradicting the stated intention of the Service Act to abandon the concept of institutionalisation.

Care and management While various development and research activities were being carried out in the seven housing environments, it became clear that staff were experiencing some increased, and in part contradictory, demands in their work. These demands played a part in creating dilemmas for staff in terms of their professionalism, and affected their daily work and the time they spent with residents. In recent years, staff members have seen an ever-increasing demand for documentation, planning, efficiency and goal orientation in social-educational work. Looking at an annual report from a housing facility, written according to standards laid down by the county authorities, it is apparent that staff have to take into account the status of development and service goals previously recorded, as well as the mandatory benchmarks. Moreover, they also have to account for levels of activities, target groups, work partners and focus areas for future work. On top of all this, they have to prepare written plans for cooperation with each resident, meetings with relatives and other people involved, ongoing revision of existing individual programme plans, as well as reports on the use of coercion, etc. This increased demand for documentation of the © The authors and Studentlitteratur

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social-educational care work they undertake is seen by staff in both a development and reflection perspective, as well as in a control perspective. The experience of staff is that increasingly they have to reflect on and direct the development of the environment, at the same time as experiencing an ever-increasing level of administrative control over what happens in the housing environment. This increased pressure for documentation and efficiency provokes different reactions and courses of action by the staff. The common point of view is that this intensified demand for documentation has led to a shift in the emphasis of their work from the communal areas and direct contact with the residents to meeting rooms, offices and desks. In the project “Documentation of Development and Interaction”, professional social educationalists express their experiences as follows: Documentation takes away time from the residents/users, documentation is mainly for the sake of others/claimants, documentation mainly means sitting down to write, written documentation can be hard/boring/difficult (Møller, 2004, p. 5, my translation).

Depending on the employees’ understanding of their occupational role, documentation is seen either as an annoyance and a barrier to carrying out the actual work they are supposed to be doing with the resident, or as a welcome improvement and a way of making the actual work of developing the housing environment more professional. The demand for documentation and visibility has led to the development of a project culture in many housing facilities. Projects are set up and carried out for the facility as a whole, for the individual units and for the individual residents. Project-information seminars are held in which each facility and unit presents its projects and results, and the county authorities provide supplementary training in “the logical model”, which is a simplified and adapted version of what is known as the “Logical Framework Approach” in international development work. The increased demand for documentation and efficiency has an impact on staff working patterns as well as on resident participation. The drawing up of individual programme plans for residents is an example of this. Clause §111 of the Service Act states that the municipal authority or county authority shall offer to draft a written individual programme plan for people with substantial physical 126



or intellectual disabilities, and that this plan should be prepared on the basis of the subject’s abilities and, where possible, in cooperation with the subject. In practice, however, a number of county authorities have produced standardised forms for drafting individual programme plans that seem to be more about satisfying the authority’s need for documentation and statistical accounts than about actually including the citizen in decisions concerning his or her life and day-to-day needs. It has been argued that it is degrading for residents to take part in individual programme plan meetings that they do not understand and are therefore unable to take an active part in, and as a result the drafting of individual programme plans to meet the demands and standards of the county authority has primarily become a job for professionals and invited relatives. Doubts could therefore be raised as to what extent the individual programme plan is used as an actual planning tool in day-to-day work with the resident and to what extent it is drawn up simply to meet administrative requirements and as a result gets filed away in a drawer until it is time to produce a revised copy (Fristrup, 2003). The increased call for visibility and efficiency results in changes in educational care work and in staff’s understanding of their profession. Educational care work in housing facilities used to be primarily about providing care and creating room for development in the day-to-day relations with residents, but now also encompasses managerial assignments including systematic planning, establishing criteria for success, monitoring, and project descriptions and implementation. This development corresponds to the general development in the field of social work. Peter Høilund and Søren Juul describe this development as being characterised by: … centralisation, instrumentalisation, increasingly influenced by management theories, and by the fact that the judicial and ethical standards and ideals have been colonised by calculating financial norms together with ideals of productivity and adaptability (Høilund & Juul, 2003, p. 9, my translation).

This development has resulted in a conflict in the roles and dilemmas in the educational care work of the housing facilities, between the educator as manager and the educator as care provider. As a © The authors and Studentlitteratur

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manager, the educator is under pressure to get the most out of funding, documenting visible results and developing clear, efficient and evidence-based methods. At the same time, however, as a care provider, the educator is under pressure from demands on his or her empathy and understanding of the uniqueness of the individual and his or her visions of the good life, as well as having to be present in all contact and communication with the resident. The contradiction in these demands is the need to operationalise and create clear procedures for work, which, because it is based on each situation and individual, cannot be clearly defined or instrumentalised without the omission of essential qualities of social-educational care. The sociologist H. Blumer (Blumer, 1969) divides sociological terms into two categories: definitory terms which accurately refer to rules of a group of objects or phenomena, and sensibility terms that are less accurate in providing guidelines as to how to approach a phenomenon. Definitory terms can be operationalised and play a role in predicting what can be observed in certain circumstances, whereas sensibility terms will only suggest in which direction one should look. Concepts like happiness, love, joy, care and “the good life” are sensibility terms and cannot be operationalised without entering into what has been called the technical fix, namely trying to disguise and solve ethical problems by means of technical rationality. The employees of the seven participating housing facilities have reacted differently, and to a more or less conscious degree, to this dilemma between management and care. One common reaction is to dutifully fulfil the management role, although close cooperation and care work with the residents are still considered the central elements of the job. In this case, the management work is carried out parallel to and with no real correlation to the daily educational care work. Plans are made, reports are written and projects carried out with no actual effect on the day-to-day life and development of the housing facility. Another way of dealing with the dilemma can be seen in the budding specialisation or division of staff into groups of social-educational care providers and groups of documentation and project workers. The care providers still regard their work and professionalism as being based on close relations with the residents, and see the

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demand for documentation and project involvement as disruptive elements that take time and energy from what is really important. On the other hand, the documentation and project workers see their work and professionalism in a wider context as being linked to directing and developing the facility as an organisation, as well as testing and developing new ideas and methods. The documentation and project workers are eager to participate in supplementary training and various courses that, in spite of ongoing discussions of attitudes, care, ethics, communication and the importance of close relations, revolve around management issues with various systematic training methods as their central elements. Generally, therefore, the housing facilities are characterised by an ongoing search for new projects and new methods that will both contribute to documenting the efficiency and flexibility of the facility and, at the same time, strengthen the staff’s sense of being “professionals” working according to clearly defined goals, terms and methods. The ongoing hunt for and implementation of new projects and new methods creates a dynamic atmosphere. The problem is that this dynamism often lacks cohesion and direction. It is striking that the same housing facility can, without any apparent sense of contradiction, carry out projects that view residents as objects of various forms of behavioural training and simultaneously implement other projects that view residents as subjects and equal partners in communication, whose modes of expression should be respected and form the basis for recognition and meaningful dialogues

Normalisation and user influence The importance of enjoying as normal a life as possible and gaining increased influence over one’s own life are the stated intentions of the Service Act, which are emphasised in this summary of results from the Ministry of Social Affairs’ evaluation programme (Ministry of Social Affairs, 2003). Core measures aimed at ensuring the implementation of the Act and its intentions are the demands for planning, documentation, efficiency and flexibility. However, these demands have the effect of diverting staff’s understanding of their work and profession from a care and development perspective


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towards a management perspective. While ethics, empathy, recognition and dialogue are at the core of care work, management is all about planning, control, efficiency and project work. Although staff handle the demands of management in different ways, these demands still affect the development of the support relationship between staff and residents. The residents’ life is subjected to careful planning and control. The needs of the residents are scrutinised and described. Strategies for meeting these needs are determined and tested. The efficiency of the chosen strategies is evaluated based on the development and efficiency perception of the authorities and professional support bodies. The resident and his or her life and development are described and become the text that will document the efficiency of the staff. Furthermore, the resident becomes involved in the demands for dynamism, development and flexibility by becoming the target of an increased number of – not always coherent – projects. The question is whether there is an incongruity between the intentions of the Social Act and the managerial measures used to implement the Act. Can the demands for documentation, efficiency and flexibility promote normalisation, deinstitutionalisation and user participation, or are we witnessing the conflict that T. Adorno draws attention to in his article “Kultur und Verwaltung” (Adorno, 1960), namely the discord between the diversity and cultural expression of lived experience, on the one hand, and the authoritative attempt to organise, systematise and prioritise this diversity on the other? There is an obvious risk of the kind of contra productivity that Ivan Illich (Illich, 1977) has described, whereby manmade systems; institutions and tools developed to serve man, counteract the intentions they were supposed to further with the consequence that man must be protected against his own systems and tools.

References Adorno, T. (1960). Kultur und Verwaltung [Culture and administration]. Soziologische Schriften I (1979): 122–146. Blumer, H. (1969). Symbolic interactionism: perspective and method. Englewood Cliffs: Prentice-Hall. 130



Fristrup, T. (2003). Det sociale træf [The social encounter]. PhD thesis. The Danish University of Education. Gustavsson, A. (1992). Livet i “integrasjonssamfundet” – en analyse av nærhetens sociale betydning [Life in the society of integration – an analysis of the social importance of closeness]. In: Sandvin, J.T. (Ed.). Mot normalt? Omsorgsideologier i forandring [Care ideologies in a state of change]. Oslo: Kommuneforlaget, pp. 203–241. Hjorth-Pedersen, M. & Nørager, J. (2002). Rapport om etablering af en vidensenhed om teknologi brugt som kompensation for mennesker med funktionsnedsættelser [Report on the establishment of a Knowledge Centre for Technology used as compensation for people with disabilities]. Hillerød, Frederiksborg Amts Kommunikationscenter. Høilund, P. & Juul, S. (2003). Hvad er godt socialt arbejde? [What is good social work?]. Social Kritik 89: 4–21. Illich, I. (1977). Disabling professions. London: Marion Boyars Publishers. Ministry of Social Affairs (1998). Lov om Social Service [The Social Service Act]. Copenhagen: Socialministeriet. Ministry of Social Affairs (2002). Evaluering af erfaringerne med institutionsbegrebets ophævelse på handicap-området, 1998–2002 [Evaluation of experiences with the abolition of the concept of institution in the disability area]. Copenhagen: Socialministeriet. Ministry of Social Affairs (2003). Et liv så tæt på det almindelige som muligt [A life as close to normal as possible]. Copenhagen: Socialministeriet, Socialpolitisk-Juridisk Center. Møller, M. (2004). Dokumentation af udvikling og samspil [Documentation of development and interaction]. Unpublished presentation paper. Söder, M. (1992). Normalisering og integrering [Normalisation and integration]. In: Sandvin, J. T. (Ed.). Mot normalt? Omsorgsideologier i forandring [Care ideologies in a state of change]. Oslo: Kommuneforlaget, pp.41–66. Tideman, M. (2004). Socialt eller isolerat integrerad [Social or isolated integration]. In: Tøssebro, J. (Ed.). Integrering och inkludering [Integration and inclusion]. Lund: Studentlitteratur, pp. 121– 140.


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7 Stories about professionalism drawn from the archives of a women’s institution

II

II Narratives and Identity


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7 Stories about professionalism drawn from the archives of a women’s institution Birgit Kirkebæk “Stories about the storyteller” demonstrates that case records and other forms of archive material about women placed in the institution on the Danish island of Sprogø can be read as stories about the professionals and their intentions towards “the girls”.

Else Helene Antonsen and her case records: her life as told by others When Else Helene Antonsen was sent to the women’s institution on the Danish island of Sprogø in 1923, her case records describe her as being in a wretched physical condition. She had chronic eczema on her face, was infested with lice and her teeth were so bad that she could not chew her food. Yet it was not this condition that had prompted a reaction from the social authorities. They had not been moved to intervene in the girl’s case until her behaviour gave rise to fears that it could prove expensive for society in social or medical terms: socially in the form of pregnancy, medically in the form of the spread of venereal disease. Else Helene Antonsen was born in September 1896. She was one of six children of whom three died. Her mother died in 1913. Her father was an unskilled labourer whose health was poor. At the time of Else’s placement on Sprogø he was a pensioner and badly off financially. Else had a sister in Keller’s Institutions (De Kellerske Anstalter) in Brejning. Her mother was described as “a little mentally ill”, her father as someone who was fond of a drink. Else’s family description fitted the profile of people suitable for the women’s institution on Sprogø, which had been set up to detain girls exhibiting “deviant” erotic behaviour and presumed genetic degeneration.


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It appears, from two small notebooks included in her case records, that it was Else’s erotic behaviour that caused offence. The district physician in Skanderborg wrote to Christian Keller, chief physician at Sprogø, that Else could not hold down a job – despite her willingness to work – “because of the large number of men pursuing her”. She was “reputedly generous” to “the entire gang of railway workers and it is a complete miracle that she seems, so far, to have avoided pregnancy and VD. But the risk is phenomenal”. Christian Keller wrote in the above-mentioned notebook: “She is erotically unbridled – she takes up with railway workers in ‘large numbers’ and cannot hold down any job.” On these grounds Else was admitted to Sprogø in August 1923. She had attended an ordinary elementary school. There is no information on whether she had been confirmed. The chief physician’s intelligence test showed her IQ to be 58.7, and she was thus within the span for mental deficiency. Else could read and write. In August 1926 she wrote her father a long letter asking him to apply for permission for her to come home on vacation. She wrote, among other things: … don’t be afraid of having me home. I will behave properly so that you can be pleased with me for you understand I’m longing to come home and see you for it is now three years since I was home […]. Believe me it is boring to be confined on Sprogø, I really would like soon to be allowed out in the world once more but I will never get away from Sprogø – them that put me here on Sprogø they have sentenced me to be locked up till I die […].

It appears from this letter that Else felt abandoned by her family because she received no letters, and was unhappy that her boyfriend had died as he was the only person who had written to her. Her father applied for a vacation for Else but was turned down because of conditions at home. Else was not allowed home on vacation until 1929. Time passed and Else remained on Sprogø. Her statement that those who had judged her would never let her out seemed to have been borne out. In October 1933 her father again tried to get Else out – this time with the aid of a vicar. The vicar wrote to the matron on Sprogø that he had been approached by Else’s father: “He is very unhappy about the fact that his daughter has to stay there and very much regrets that he agreed at the time to his daughter’s incarceration.” The vicar asked if Else had been placed on Sprogø by court 136



order. As was customary, it was not the matron who replied to the letter but the chief physician. He wrote to the vicar that Else: … was admitted to this institution on August 23, 1923, because of her sexual relations, as she was involving herself with lots of men, among them an entire gang of railway workers. She is mentally deficient to a mild degree. She was transferred to our main institution on a trial basis but she ran away so we had to take her back to Sprogø. If she is to be released from Sprogø, it seems necessary to me that she should be sterilised first so that she cannot bear any defective children. If you, sir, can find her a home that we might be able to subsidise by 3– 400 kroner annually as a care-taking fee, I will recommend that she be released on a trial basis.

In this letter the chief physician avoided answering the vicar’s question of whether Else had been admitted by order of the court, and in addition made the vicar responsible for finding a possible home for Else. Finally, he also made it clear that Else’s condition was sufficiently poor that those looking after her would need payment. Else was not released. Later Else was “freed on trial”, as it was called, into controlled family care. She was readmitted on several occasions, and several times she asked permission to get married but this was always refused. In the 1940s there was increasing public criticism over care of the mentally deficient. The criticism was that too many people were deemed mentally deficient and administratively deprived of their freedom; that those admitted to institutions for the mentally deficient were automatically sterilised, and that they were artificially detained in institutions against their will. At this time – in 1942 – the reporting official at the Sprogø institution recommended that Else should be permitted to marry. She did so, but remained under the control of the institution until 1960. In the end it was left to her and her nephew to take up the cause of securing her final release from care. At this time change was on its way thanks to a new Mental Deficiency Act in 1959 and a reorganisation of the care system for the mentally deficient.


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Three stories told by staff about the history of Sprogø “The Battle for Sprogø”, “The Fire of 1925” and “Sprogø during the War” are three stories reported in newspaper articles and memoirs as highlights in the history of the island. These are stories included in descriptions by successive chief physicians of the founding of the institution and life on the island. Firstly, there is the story of the battle to make the island a success story, with chief physician Christian Keller as the main protagonist. According to this story, Keller achieved something beneficial for society and for the mentally deficient through his persistence in the face of opposition from the State Railways which owned the island. Secondly, there is the account of the fire that resulted in the old buildings on Sprogø being replaced by new, modern institutional buildings. This was described as a happy occurrence and, at the same time, the arson was used to justify the necessity of the island by implying that the girls posed a risk to society. And, finally, the existence of the institution was legitimated through the story of how much it was missed when it had to be evacuated during the war. These three internal “highlight stories” were useful for strengthening cooperation and team spirit among the staff on festive occasions. The stories demonstrated the legitimacy of the island institution and also emphasised that those employed at Sprogø in a professional capacity knew what was good for the mentally deficient and for society as a whole. In the stories “we” are opposed to “them” – those who had not, as yet, recognised the necessity of an island institution for women. The moral of the first story is that it pays to fight for a just cause, and the chief physician, Christian Keller, was tireless in this respect. The moral of the second story is that “the girls” on the island really were morally dangerous, so dangerous that they were capable of setting fire to buildings. The very fact that the girls were dangerous proved the legitimacy of the island institution. The moral of the third story is that the important work with the women confined on Sprogø was almost ruined by the Germans during the war, as the island institution had to be evacuated, and it was only through professional expertise and perseverance that the chief physician and

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matron succeeded in isolating “the girls” on land. Therefore it was a great relief when the island institution was reopened after the war. The war had shown that the institution was indispensable. The constant theme is that Christian Keller had been prescient in the 1920s when he fought against all the odds to establish an island institution for “dissolute and loose” women on Sprogø, and that only his persistence and foresight had saved the day. In addition, these stories emphasise the difficult nature of the work on Sprogø, the expertise of the professionals and the correctness of their diagnoses. They are supplemented by the case records and the basic stories told in the correspondence about individual girls. These basic stories form “the Sprogø girl” – a particular type of woman characterised by “dissoluteness and looseness”. The diagnosis, repeatedly confirmed in the stories of the case records, is “moral mental deficiency”.

Scientific stories about correct diagnosis In the early 1900s discussions of mental deficiency were based on Gregor Mendel’s (1822–1884) laws of heredity, which led to a new, more pessimistic view of an inexorable heritage that could not be levelled or tempered through environmental measures. The ideas of eugenics and social hygiene placed the focus on prevention. It was seen as imperative to prevent the genetically “less worthy” from having children. Sterilisation and castration were added to segregation and isolation as ways of preventing unwanted births. In earlier times, it was the mentally deficient who were unable to work that were seen as the heaviest burden, but in the early 1900s it was those who were able to work and looked indistinguishable from “normal” people that were perceived as posing the greatest risk. They were seen as a threat to civilisation because their “hidden” heritage and presumed lesser worth could “infect” healthy people if they were permitted to marry and have children. A specific group of mildly mentally deficient people were segregated at this time. They were the “morally mentally deficient”. According to the specialists, their intellectual deficiency was less serious than their moral deficiency. They were deemed asocial, antisocial or as showing psychopathic tendencies. Special island institutions were established for them © The authors and Studentlitteratur

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under the central control of Christian Keller and Keller’s Institutions in Brejning. In 1911 an institution was established on the island of Livø for antisocial, mentally deficient men. In 1923 a similar institution was established for women on Sprogø. Both island institutions remained in operation until 1961. Who was “the Sprogø girl”, if we are to believe the construction of her in the case records, correspondence, articles and theoretical journals of the time? Why was it necessary to remove her to an isolated life in an island institution? What diseases did she suffer from? What treatments were available? And of what use could she be, given that she had been socially segregated as useless? The descriptions in the archive materials of “the Sprogø girl” are of a stereotypical nature with the same few characteristics constantly reiterated. The descriptions include immorality; the risk of mild mental deficiency combined with character defects; mental deficiency described as an on-off illness; the danger of pregnancy and illegitimate children; the risk that the woman would become a burden on the poor-law administration, and the woman’s reduced capacity for work. The case records often link the women’s immorality to hyper-sexuality and nymphomania. Moreover, in the case records, correspondence and newspaper articles, incest is described as an indication of hyper-sexuality and dissoluteness. One common thread is that, sexually, the women are seen as the active and inviting partner. At times the case records and at other times the reports describe the mentally deficient woman’s “state of illness” as characterised by intermittent “attacks”. According to these sources, the women’s disease manifested itself in its most extreme form during their younger years. If men came to the island the disease would reawaken and cause hysteria. In almost all case records there are descriptions of episodes involving temporary attacks which “had now passed”, the woman had “relaxed” again, or she “had shown increasing signs of agitation” which had to be checked. No matter how the course of the women’s “disease” progressed, there was professional agreement that mental deficiency was a disease that followed its own pattern and was, to a large extent, hereditary and therefore independent of the environment, although setting a good example and imposing discipline were important 140



features of the treatment. A substantial part of the women’s disease was the character changes that influenced the women’s emotional life, morals and, not least, will. This defect was exacerbated and marked by the women’s lack of insight and reason, which were attributed to their weak intelligence. “The Sprogø girl” was regarded as a child in the body of a grown woman. In some cases the woman’s intellectual and character defects did not become apparent until puberty when she was expected to show the will to resist her sexual urges. The women’s fluctuating states were recorded in the little notebooks that form part of their case records. Here we find descriptions of temper tantrums, mood-swings, impertinence, anxiety and sulkiness, which had to be treated with relaxing bed rest. There are also descriptions of “hysteria” which was treated with bed rest, belt fixation, isolation and possibly injections. Nervous symptoms such as shaking, depression, hallucinations and bed wetting are listed on the admittance documents, but the description of the treatment on Sprogø does not focus on nervousness and there is never any discussion of whether it could be caused by mental illness or wrongful placement. The view is that the women are ultimately better off in a care institution for the mentally deficient because of their low IQ. In several cases the women scored a lower IQ when assessed by the chief physician than they had when tested by the doctor who had written their admittance papers. This did not, however, occasion any comment as the chief physician of the institutions for the mentally deficient was considered to have the greater professional competence. It was the combination of presumed hereditary defect, aberrant behaviour and inability to hold down a job that led to the women’s admission to Sprogø. One of the most important arguments for admission was that the woman had borne one or more children out of wedlock who had become the responsibility of the poor-law administration, or that the woman was so dissolute that pregnancy was a very real risk. The view that the women were tainted by their heredity was supported by family studies and descriptions. Accumulations of serious social problems within a single family were taken as sign of a hereditary taint, and were also used as an economic argument for intervening before the misery spread any further. © The authors and Studentlitteratur

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It is, however, the economic argument that is most prominent, both in the chief physicians’ interpretation of the women’s diagnosis and in the recommendations for their admittance from their own parishes. In several cases, it is the woman’s own parish that is reluctant to allow her to undergo a trial period in controlled family care for fear that the woman will “burden” them with a child. In other cases it is the chief physician who raises objections. The fear of the women’s becoming pregnant overshadows the fear of their contracting venereal disease in arguments for or against trial periods in controlled family care. This impression becomes more marked after the passing of The Sterilisation Act in 1929. Talk of the risk of VD lessens, as part of the argument for the procedure was that after sterilisation the mentally deficient could be placed in controlled family care on a trial basis, which was a cheaper solution than institutional care. Work formed part of the discipline aimed at calming and training the women. In controlled family care the women were expected to work either for no pay at all or for mere pocket money. In this way they helped to pay back some of the cost of their placement in an institution for the mentally deficient.

Correct professionalism as described by the staff themselves in letters and case records and by others in newspapers The roles of the confined as abnormal, deviant “poor creatures” and the staff as self-sacrificing benefactors are clearly set out in the many letters and articles held in the archives. This definition of roles was common knowledge and accepted as part of the identity of the professionals. The confined women also apparently identified with this definition of roles, as they were seldom critical of the established order when questioned by journalists. Some were expected to lead, others to be led; some should help, others be helped. This is the unvarying message of material relating to the island institution. There is also no doubt that the matron and chief physician became almost “mother” and “father” figures in the minds of many of the confined women. 142



The chief physicians and matrons were praised in newspaper reports and letters for their disinterested, self-sacrificing work. At the same time, it is clear that the wording of the newspaper articles was influenced by the chief physicians. The articles printed in the papers are uncritical; they are uniformly positive about the treatment which is described as necessary but humane. There is repeated emphasis on Christian Keller’s initiative in setting up the island institution. In 1922 his “unceasing work to isolate abnormal young women” was declared no less than “an international experiment” by Nakskov Tidende (The Nakskov Times). Sprogø represented the humane face of the courts in exempting the non compos mentis from punishment and sentencing them instead to treatment in special institutions, and this humane aspect was constantly emphasised. It was possible to praise Keller’s work for precisely these reasons. But the humane aspect was also evaluated in terms of the chief physician’s sacrificing himself for people who were considered worthless by the standards of society. This self-sacrifice, however, also had its positive sides: recognition, admiration, a livelihood and power over an institutional kingdom with ever-expanding special wards. The matron had a dual role as maternal ideal and detached professional in relation to the girls’ temper, behaviour, ability to work and habits. The matron represented, through her position, the order, upbringing and female guidance of “the home” for “the girls” entrusted to her care. The case-record texts, such as those relating to Else above, not only reflect contemporary views of the women on Sprogø but also the professionals’ view of themselves. For the professional, the case records are a legitimising text. The description of the woman, the linguistic construction of her and the entire course of events can be seen as an argument that the woman received the best possible treatment at the institution following her diagnosis. If we compare the case records with the arguments put forward by the chief physicians in newspapers, medical journals and correspondence, it is clear that there are fewer shifts in the case records than in the other texts. While the case records are written as if nothing new had happened to change prevailing views and treatment strategies, the other texts are more current and have a purpose. The contemporary aspect becomes particularly obvious in the newspaper reports. © The authors and Studentlitteratur

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Christian Keller, for example, claimed in his articles from the 1920s that the women could not be treated and argued the necessity of rendering them harmless through confinement on an island as part of his case for establishing the island institution, while in the 1950s chief physician H. O. Wildenskov emphasised the efficacy of the treatment offered at the island institution as part of his case against its closure. The chief physicians’ motives for arguing the legitimacy of the island had to do with their paternalistic care for “the girls”, the preservation of their own professional image, and the expansion of their treatment empire. A further indication of institutional practice is the fact that the case-record texts vary little over the years with regard to how the women were perceived. Minor changes were made over the course of time with new matrons, new staff, and new “girls”, but judging from the case records the style of the place remained the same. A day-to-day routine had been built up to deal with division of labour, rotation of duties, holidays and festivities. There is an element of inertia in the established routines and in the perception of what the professional task entailed. This can be seen in the matrons’ notes, letters and speeches at anniversary celebrations. The professional understanding of the character and necessity of the task went hand in hand with the permanency and reliability of their construction of the task. The picture of the “dissolute and loose Sprogø girl” was apparently accepted by the staff on the island. They themselves added to the construction in the descriptions they passed on to the chief physician. It can be said that “the Sprogø girl” as a concept was formed through these texts: case records, articles, correspondence and notes, but that these texts themselves initiated a dialogue with the texts of the time about social hygiene and eugenics, which made the concept intelligible for professionals, politicians and the public.

Quote migration and shifts in quotes When one analyses case records, correspondence and notebooks as stories, certain fixed patterns are revealed. If one compares the women’s often very voluminous case records with the text written 144



by the chief physician and matron in notebooks and correspondence, it is striking that there is both quote migration and quote shifting. The quote migrations are more or less direct quotations of earlier written comments. They can be quotes from the admittance document, quotes from a former place of employment, or quotes from the chief physician’s summary of the case, for the courts or in connection with an application for permission to carry out a sterilisation. The quotes move through the case records for many years without changing, as if what is described is still current, with no regard to the woman’s change in age, possible altered circumstances, or a different year. There could be several explanations for this: • The person writing the case records looks back and quotes whatever, in his or her mind, is most characteristic or most important with regard to the purpose of his or her notes, application or letter. • The person writing the case records sees the information in the case records as independent of the passing of time – that is, as a description of the diagnosis, repeatedly confirmed by the quotation of earlier descriptions and the addition of new information, which will in turn be quoted in future. • The person writing the case records writes in the existing style. Shifts in quotes typically occur when the chief physician wishes to achieve something specific through his arguments. He argues by including what he sees as of special interest to the recipient. The entire argument is within the possibilities posed by the current discourse. Quote shifting is typically found in cases where the chief physician is arguing against allowing a woman a trial period in controlled family care, or where he is arguing against a woman’s marriage or for a woman’s sterilisation. For example, the fact that Else had been involved with some railway workers underwent changes in some of the chief physician’s letters until it appeared as if she had serviced the entire gang.


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Stories as part of the theories of the time Through analysis of the case records, one gets a sense of how the theories of the time on eugenics, prostitution and poverty combine with the chief physicians’ more practical and socio-hygienic interpretations of the purpose of the girls’ placement. The case records express a purpose with regard to the women’s isolation, as much as they are about the individual woman’s case. The purpose was partly to help the women, partly to render harmless those who were considered to pose the greatest risk. The case records are more about the danger “the Sprogø girl” was thought to represent in terms of moral infection, social burden and VD infection than about the individual girl herself. A diagnostic ideal is constructed, so to speak, as opposed to the ideal norm. Many words were written about Else. Others told her story. Others decided her fate. My point is that stories told by the staff are stories told about the staff and their professional point of view, but they are also stories of practical importance, because stories about “the others” as a group or diagnosis deny the perspective of “the others”. Else’s own story was overlooked. I have tried to recover Else’s voice through analysis of the archive material and reconstruction of her text from a discourse-analytical point of view.

References Kirkebæk, B. (1993). Da de åndssvage blev farlige [When the mentally deficient became dangerous]. Holte: Forlaget SocPol. Kirkebæk, B. (1997). Defekt og deporteret. Ø-anstalten Livø 1911–1961 [Defective and deported. The island institution of Livø 1911– 1961]. Holte: Forlaget SocPol. Kirkebæk, B. (2001). Normaliseringens periode. Dansk åndssvageforsorg 1940–1970 [The period of normalisation. Danish care of the mentally deficient 1940–1970]. Holte, Forlaget SocPol. Kirkebæk, B. (2004). Letfærdig og løsagtig. Kvindeanstalten Sprogø 1923–1961 [Dissolute and loose. The island institution of Sprogø 1923–1961]. Holte: Forlaget SocPol.

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8 Adult children of mothers with intellectual disabilities: three life histories

8 Adult children of mothers with intellectual disabilities: three life histories Rannveig Traustadóttir and Hanna Björg Sigurjónsdóttir

Introduction This chapter tells the stories of three adult children of mothers with intellectual disabilities. Women with intellectual limitations are widely presumed to be incompetent as mothers and many studies have reported that they are at high risk of having their children removed. Research has found that 40–60% of parents with intellectual disabilities lose custody of their children (Booth & Booth, 1994; McConnell, 2001). A review of the literature reveals that next to nothing is known about the grown-up children of parents with intellectual disabilities. There have been no longitudinal studies on the effects of being raised by parents with intellectual disabilities and no attempts to map the children’s progress through adolescence and into adulthood (Tymchuk & Feldman, 1991; Dowdney & Skuse, 1993). The problem of finding these children and eliciting their cooperation seems to have hindered research in this area. The first comprehensive study of adult children was conducted by Booth and Booth (1998), and was based on a qualitative study of 30 people. The study we present here is on a much smaller scale, focusing only on three people. We begin the chapter by accounting for the study. This is followed by the three life stories. We conclude by reflecting on some of the themes of the study and connecting them to the findings of Booth and Booth’s study (1998) of adult children.

The study Our life-history research with adult children of mothers with intellectual disabilities grew out of a study we were working on in the © The authors and Studentlitteratur

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1990s. This was a study of women with intellectual disabilities using qualitative research methods (Hammersley & Atkinson, 1995; Taylor & Bogdan, 1998). Over a period of five years (1996–2000) we did long-term participant observations and/or interviews with 30 women with intellectual disabilities (Emerson, Fretz & Shaw, 1995; Kvale, 1996). One of the issues we focused on was motherhood and family life, and 10 of the 30 women were mothers. In selecting mothers for participation in the study we used similar criteria as other researchers working with this group (see Booth & Booth, 1994; McConnell, 2001). These criteria, usually referred to as the social-systems approach (Mercer, 1973), were the following: the mothers were formally diagnosed as having an intellectual disability; they had at some point in their lives used services for people with intellectual disabilities, or professionals who knew them well identified them as having an intellectual disability. All ten mothers met at least one of these criteria. The mothers composed a diverse group and fell into three generations: (1) three elderly mothers in their late 70s and early 80s; their children were born around the 1950s and were middle aged at the time of the study. (2) Two middle-aged mothers in their 40s whose children were teenagers or young adults. And (3) a group of five young mothers in their 20s who had young children of preschool and school age. Focusing on these three generations allowed us to explore how the possibility of motherhood and family life for women with intellectual disabilities had changed over a period of 50 years (1950– 2000). The study showed a significant change for the better and we found that women with intellectual disabilities could, with appropriate supports, be successful as mothers (Sigurjónsdóttir & Traustadóttir, 2000, 2001; Traustadóttir & Sigurjónsdóttir, 2004). Our findings were consistent with the findings of studies in other countries (Andron & Tymchuk, 1987; Booth & Booth, 1994; Llewellyn, 1990; Tymchuk & Feldman, 1991). However, despite these research findings and the positive developments, we also found that mothers with intellectual disabilities continue to be faced with negative attitudes, both from the general public and professionals who continue to presume that people with intellectual disabilities lack the competence to be good-enough parents.

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From the outset of the study we, as researchers, encountered widespread notions of this presumed incompetence and negative attitudes towards the group of mothers we were studying. The most common response to the study concerned the welfare of their children. What, people asked us, becomes of the children who have mothers with intellectual disabilities? Isn’t it a terrible experience to have a mother with an intellectual disability? Surely no one would want to grow up with “these” mothers! It was difficult for us to answer this based on our observations and interviews with the mothers and their young children. But these were important questions which we wanted to be able to address. We modified the focus of the study and approached three adult children of the oldest generation of mothers and asked them to tell us their stories and experiences. They agreed to talk to us and we conducted life-history interviews with them (Goodley et al., 2004; Plummer, 2001). They were all middle-aged people with a long history to share and the life-history approach seemed the most appropriate method of capturing their experiences. This chapter contains their stories.

Three life stories The three people we talked to were adult children of the three mothers in the oldest generation in our larger study. Their mothers were in their late 70s or early 80s at the time of the study and the “children” were middle-aged people. They were: Bragi, a chef by training, married and the father of four; Sunna, married with three daughters and employed in human services, and Vilborg, a single woman who lives with her mother and brother, and works in a factory.

Bragi Born just before 1950, Bragi was 50 at the time of the study. He was married and had four children. He was trained and worked as a chef. Bragi grew up with his mother, grandmother and large extended family in a small fishing village in Iceland. The conditions in his childhood home were difficult. The family was large and did not have much money; 12 to 14 people lived in a small house and © The authors and Studentlitteratur

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four to five people had to share each room. Bragi’s memories of his early years are few and unclear, but he says he often felt his mother was being treated badly. I felt like she was being used. This was a large family. All the grownups were working outside the home and she had to do all the housework, which was very hard work. When I think back I remember being angry because they made her do too much work.

Bragi was ten years old when his mother was suddenly removed from their home and sent to an institution in a different part of the country. “She never should have been sent away, there must have been other options.” Bragi was very unhappy that his mother was sent away, particularly because he was not told about it until after she had left. “It was never discussed. Suddenly she was just gone.” The family did not assist Bragi to stay in touch with his mother and they did not see each other for five years. The following years were difficult for Bragi. He felt his right to grow up with his mother had been taken away from him. He could feel prejudice against him from members of his family and friends, especially from people outside the family. “I’ve always felt like I had to prove myself for these people,” he said. As a child he had no one to talk to about his feelings. “In those days no one talked much about feelings. Men, in particular, were not expected to have feelings and I remember clearly being told as a boy that men did not cry.” Bragi’s grandmother was an old woman when she took over the task of raising him, and early on he had to take responsibility for himself. “I feel like I have always been an adult. I had to act like a grown-up right away, not least after grandpa died.” Bragi started working for wages when he was 11 years old. He was 13 when his grandfather died. Soon afterwards, he moved with his grandmother to live with his aunt and her husband, who took over the parental responsibilities and wanted Bragi to call them “mom” and “dad”. Bragi said it felt funny to call two women “mother” but “it was also very wonderful to be able to say ‘mom’ and ‘dad’ because it should really be the right of each individual to have parents he can turn to.” Bragi’s new home was close to the institution. This made it possible for him to see his mother again. It was difficult for Bragi to meet 150



his mother after five years. “All this time I thought of her as my mother. That is why I contacted her immediately and visited her regularly.” Despite this, his feelings were ambivalent: “I was excited to be allowed to go and visit her and it was good to meet my mother again, but partly I saw it as my duty.” Bragi visited his mother in the institution. Although he did not find it difficult to go there: “the other people sometimes irritated me. I think I really did not understand why she was there. I noticed she was better functioning than the others despite the fact that she was supposedly very mentally disabled. She was very proud of me and told everyone I was her son.” As a grown man Bragi thanks his foster father for the good relationship and regular contact he had with his mother. He said his foster father was a very good man and without prejudice. He said to Bragi every weekend: “Aren’t you going to visit your mother?” and he would often drive Bragi to the institution. Bragi’s mother became pregnant with him after having been raped. Bragi is not sure who his father was but he thinks he knows: “I think the man who is my father, and abused my mother because of her disability, was a married man.” He has tried to find out who his father was: I tried to write to the sheriff where I grew up. He put my letters away and never answered me. Then this man died and then the sheriff died. So nothing came of this. I had the feeling the sheriff did not want to stir up this old case. In my letters I specifically said I was not trying to claim anything. I just wanted to have confirmed who my biological father was. If I am right I do have half-siblings and sometimes I have wanted to establish contact with them.

Bragi does not see his mother as mentally disabled. For him, she is primarily his mother. “I think that for any person nothing can change for that person who his mother is. She is always his mother, no matter who she is or what she does.” His mother sometimes had “difficult behaviours” and “fits.” Bragi believes the reason was her difficult childhood, sexual abuse and institutionalisation rather than this being connected to her disability. After 40 years of living in the institution “she had her dignity restored”, as he phrased it. She got married to a man she met in the institution and they moved out to live in the community on their own. “It was so won© The authors and Studentlitteratur

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derful when they were allowed to get married. There was no difference between them and other people. They teased each other and were just like any other couple in love.” Bragi is still hurt by the way his mother has been treated: “It was not the right decision to send her away to the institution. I think an individual like my mother would not be sent to a place like that today. I am convinced that if she had gotten the right supports and education she could have learned to read and write. Everyone should have support, particularly people like my mother. We need to find out what each person can do and help them reach their potential.” Bragi has never been ashamed of his mother: “I have never tried to hide where I come from.” He is glad he never did that: “because I think I would have been unhappy with myself if I had tried to hide who I am.”

Sunna Sunna is in her late 40s. She is married, has three children and works in human services. Her mother, Sigrídur, or Sigga as she is most often called, lived in a small town where she grew up with her parents and 13 siblings. As a young woman, Sigrídur was sexually abused. Sunna was born as the result of this abuse. She was taken from her mother at birth and raised by one of her aunts. Her birth mother was sent to an institution in a different part of the country soon after Sunna was born. Sunna grew up believing her aunt was her mother and her cousins her siblings. Sunna thinks the reason her origin was kept a secret was to protect her and spare her from knowing the uncomfortable truth. Her first memory of her birth mother is unclear: I remember this woman coming for a visit and we were all in my grandparents’ home. I assume we were gathered there because she was coming. I remember that she held me in her arms for a long time and I found it very odd… she said ‘my daughter’ and hugged me.

When Sunna was five years old she learned the truth about her origins. She was playing outside when some kids told her that her father was a “moron” and “Sigga weirdo” was her mother. This was 152



a shock to Sunna: “I remember running inside to mother demanding she tell me that Sigga wasn’t my mother.” Her foster mother took her in her arms and tried to explain things to Sunna. I did not want it to be this way. I found it very difficult not to have a normal mother. It was such a shock and I carried it around for a long time. It hurt really bad. And on top of this people wanted to associate me with some terrible man they said was my father. This has, of course, followed me all my life. My mind wanders there and I start thinking about her and my background and… what is my bloodline?

Sunna did not see her birthmother until ten years after this event. Her thoughts were frequently with her mother but she kept these thoughts to herself and did not feel she could discuss them openly with her foster mother. She did ask her foster mother about her mother’s life, what she had been like growing up and what her life had been like before she was sent to the institution. “I have so often wondered about what Sigga is thinking. How much does she know? What are her feelings?” When Sunna became older she found it primarily sad that her mother had not been “whole”. It was easy to accept that Sigga was my mother. I quickly got over that. I got over that as a kid. Just accepted it. But the curiosity about my father’s side came when I was a teenager. I wanted to know more. But I got nowhere with that.

It has haunted Sunna for much of her life that she does not know about her father. Not that she necessarily wanted to meet her father but she wanted to know where she came from. Her family thought it was most likely that her father was a family friend and a good friend of her uncle. This man, however, had denied being her father at the time. Sunna says she is not sure because once when she was out at a bar, a man came up to her and said he could be her father. She was very startled and the thought haunts her: “How many men could there be? How many men abused my mother?” When Sunna was a teenager the family moved to a town close to the institution, making it possible for her to take up contact with her mother. It was difficult for Sunna, then 15 years old, to visit her mother. This was the first time she had met her since finding out that Sigga was her mother. Her aunts accompanied her the first time she visited her mother. Sunna described the shock of walking into the institution: © The authors and Studentlitteratur

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I would never have believed how difficult it was and for a long time I found it terribly difficult just to go there. In those years the institution was overcrowded. And the people were so low functioning. But she (Sigga) came dancing towards us and offered us coffee. Little by little I got used to the institution and it became easier.

As time went by her mother also got better rooms and was moved to live with people with whom she had more in common. Sunna has never regarded her mother as intellectually disabled. Her mother was born normal but became seriously ill when she was five years old. “She had to re-learn to talk and had to learn everything again.” Sunna views her mother’s disability as “mental instability”. “I’m not sure why, but I have chosen to look at it this way. Maybe deep down I have been scared and not wanted to check what is exactly the matter with her.” Sunna is very fond of her biological mother. “I can also feel her warmth and her love for me.” I have never called her ‘mother’ except when we are alone, just the two of us. I mostly do it for her because I know how much it means to her. But for me she is mostly Sigga, although she has had a great deal of influence on my emotional life. I feel like she has missed out on so much in life. She has had to sacrifice so much, but although I may have deep feelings for her as my mother, I have not been able to express them. It is easy for me to give her a hug and be good to her… but it is more difficult for me to make a deeper connection.

Despite this, Sunna needs her mother’s affection and it hurts her not to receive Christmas presents from her: She gives Christmas presents to her sisters and I am jealous not to get a small package from her. I think it is mostly because the people who work in the institution do not think of it as it is they who help her with this. But I become jealous. I take care of her just as much as her sisters. It is not that I want something in return, but I do want to have something that is from her.

It has sometimes been a balancing act for Sunna to have two mothers: The worst thing I know is when the two of them are together. It is like mother (her foster mother) always has to tell Sigga what to do and how to do things, like she was a kid. She continues to do this although she is a grown woman. Sigga is the way she is and you will

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not change her. I find this really difficult because I can see the negative effects of this on Sigga. She is maybe in a good mood but becomes very insecure and like a little kid. It is very sad.

Sunna sometimes feels caught between her two mothers. She feels she needs to be careful when it comes to her foster mother who raised her and to whom she owes so much. “I would never call Sigga ‘mother’ in front of her because I would be afraid she (her foster mother) would take it as a rejection.” Despite Sunna’s complicated feelings towards her mother and the fact that she did not get to know her until she was a teenager, they have managed to establish a good connection. Her mother, however, has never initiated contact. It is Sunna who does that. She visits her mother, takes her for a drive and invites her for birthdays and holidays. Reflecting back, Sunna says she does not think constantly about having been taken away from her mother: But I have often thought about how wonderful it would have been to grow up with my blood mother. Deep down in my heart, of course, I would have wanted that. I am sure it would have been a different feeling. I am convinced that I would have been able to open up to and be more loving to that person, the same way I feel like I can open my heart to my children. That would have been wonderful.

Vilborg Vilborg’s experiences are not as emotional or dramatic as those of Bragi and Sunna. She has lived with her mother most of her life and the two of them have always been close. Vilborg was 50 at the time of the study. She is single and has no children. She lives with her mother and brother. Vilborg’s brother is also single and the two of them take care of their mother who is in her 70s. Vilborg’s mother had three children but the eldest sister died of cancer a few years before the study took place. Vilborg has a job in the food industry as an unskilled worker and has worked in the same factory for more than 20 years. Vilborg describes herself as a “slow learner”. She finds it more difficult than Bragi and Sunna to articulate her feelings and experiences. Vilborg grew up with her mother, grandmother and two siblings. Her mother was a migrant worker but spent holidays and summers © The authors and Studentlitteratur

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with her children. The grandmother was mostly in charge of their upbringing until she died when Vilborg was a teenager. After that the mother took over raising her three children. Vilborg’s grandmother was a widow when she took over the main responsibility of raising her three grandchildren. She worked as a housekeeper for an old man who was a widower and they lived in a small apartment in his house. “The old man,” as Vilborg called him, “was nice to us kids. He allowed us to live in his house and we could call him grandpa.” Vilborg has fond memories of this man who was kind to them and took her and her siblings to Christmas dances. Vilborg and her siblings, a sister who was two years older and a brother two years younger, missed their mother. For large parts of Vilborg’s childhood, her mother was away for much of the year. “We did not like her going away to work all the time,” Vilborg said. The fact that they lived with their grandmother made things easier. “I always used to stay in the kitchen with grandma when she was cooking,” Vilborg said. When she was about ten years old the widower died and they had to find another place to live. About the same time, Vilborg’s mother stopped working as a migrant worker and moved in with them full time. After that the mother and grandmother took care of the children until the grandmother died about four years later. It was a big blow to Vilborg to lose her grandmother, but the children, who were teenagers by then, continued to live with their mother. Vilborg’s mother was engaged to the same man for about 40 years. He was not the father of any of her children. He spent most evenings and weekends with them but did not live with them. Vilborg is not sure why, she thinks maybe it was because “he drank heavily and was sometimes difficult when he was drunk”. Vilborg and her siblings have good memories of this man whom they viewed as their stepfather and who took them on fishing vacations in the country every summer. Of the three adult children, Vilborg was the only one who has always known who her father is. That, however, did not make much difference: “He has never cared about us, never wanted to have anything to do with us and never did anything for us.” Her father drove a car for a living and lived on the same street as Vilborg for a while. “I often saw him outside fixing his car.” She sometimes went over to watch him: “but he never spoke to me”. Sometimes he 156



talked to her brother, who was not his son. Vilborg felt very hurt and found it difficult to deal with her father’s rejection. Her mother tried to talk to his brothers about this. The brothers always treated Vilborg and her mother well and kept in touch with them. But Vilborg’s father continued to ignore her. When their grandmother died the siblings’ responsibilities increased. They started working around 15 years of age and shared the housekeeping and expenses with their mother from that time on. Vilborg and her brother have lived with their mother since they were teenagers. Both have a close relationship with her and have never viewed her as disabled. They take pride in taking good care of her now that she is getting older. The three of them are a close family and do most things together. They jointly run the household, take turns doing the weekly food shopping, split the bills and share the cooking, doing the dishes, laundry and cleaning. They also spend most of their free time together. Being a religious family, they attend church and go to religious meetings two to three evenings a week and on weekends. They also go for drives in the country or to popular tourist spots to have coffee. Vilborg bought a car with her brother. He does the driving as she does not have a driving licence. Each summer the three of them take a summer vacation together and every other year they travel abroad.

Discussion The stories above are brief versions of the rich and detailed accounts given by the three adult children we talked to. This was an explorative study using a life-history approach. We approached our informants not knowing what to expect and were surprised by many of the things we learned. Beforehand we had expected to find a mixture of positive and negative experiences. We were surprised by the unanimously strong, positive feelings the three people expressed towards their mothers. The widespread notion that it must be a terrible experience to have a mother with an intellectual disability was not confirmed. On the contrary, we met three adults who had deep feelings of love, warmth and respect for their mothers. What had hurt them most was being separated from their mothers. Thus, the common assumption that the welfare of chil© The authors and Studentlitteratur

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dren of mothers with intellectual disabilities is best served by removing them from their mother’s care is not supported by this study. This finding is shared by Booth and Booth (1998) in their research with adult children. They warn against removing children from their parents, even if they may need a lot of support, and point out that it can do more harm than good. However, it is important to point out that our small study has limitations and it is impossible to generalise from these three life stories that all children of mothers with intellectual limitations have positive experiences. It is more logical to conclude that they, like other people, have mixed experiences as is reflected in a personal account written by Carol R. Ronai (1997) where she describes her feelings in an article entitled: “On loving and hating my mentally retarded mother”. Ronai criticises the silence about parents with intellectual disabilities and their children. In particular, she criticises scholars for not having focused on the experiences of children of intellectually limited parents in their research and writings. To break the silence, Ronai, herself an adult child of a mother with an intellectual disability, decided to write about her experiences. For the three people we talked to, their mother was first and foremost their mother. Her disability was not the primary issue. In fact, none of the adult children viewed their mother as mentally disabled, none of them was ashamed of their mother or her disability and they did not try to hide where they came from. Not knowing their fathers or anything about their father’s side had been much more painful than their mother’s disability. It was particularly difficult for two of them to cope with the fact that their fathers had sexually abused and violated their mothers. Also, because none of them knew or had contact with their father, their mother became even more important. She was the only parent they had. Bragi and Sunna were separated from their mothers as children. Both re-established contact with their mothers as soon as they were old enough and had the opportunity to do so, and both have maintained a close relationship with their mothers as adults. Not even the fact that their mothers were living in large institutions could hinder them from reuniting with their mothers. The stories of Bragi, Sunna and Vilborg reflect love, respect and gratitude towards the people who supported and took care of them in their mothers’ absence, particularly their grandmothers and fos158



ter parents. The importance of extended family is evident in their stories. This is also an important theme in Booth and Booth’s (1998) study where they point out that extended family is often crucial for children who have parents with intellectual disabilities. Research tells us that women with intellectual disabilities can, with appropriate supports, be successful as mothers (Espe-Sherwindt & Crable, 1993; Llewellyn, McConnell & Bye, 1995). For most of the 50-year period we have examined in our study, such support has come from extended family networks. It is only in the past decade or so that formal social services have been developed for this group of mothers. The development of services has not diminished the importance of support from extended family. Family supports can compensate for a lack of competence on the mother’s side and ensure satisfactory care for the child. The positive experiences of Bragi, Sunna and Vilborg may, in part, derive from the fact that they grew up within the extended family network which has protected them and ensured their well-being. The three stories in this chapter reflect how important biological ties are and underline the significance of respecting the connections between children and parents. The separation from their mothers deeply affected Bragi and Sunna who, as adults, view their own families as the most important thing in their lives, and both of them place strong emphasis on good relationships with their children. Booth and Booth (1998) point out that: “adults need parents too”, and remind us of the importance of the relationship between adult children and their parents, and that this relationship is often at the heart of people’s adult identity (p. 208). The life stories of the three people in this chapter echo this and the relationship Bragi, Sunna and Vilborg had with their mothers with intellectual disabilities continued to be of great importance to them during their adult years.

References Andron, L. & Tymchuk, A. (1987). Parents who are mentally retarded. In: Craft, A. (Ed.). Mental handicap and sexuality: issues and perspectives. Tunbridge Wells, D. J. Costello, pp. 238–262. © The authors and Studentlitteratur

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Booth, T. & Booth, W. (1994). Parenting under pressure: mothers and fathers with learning difficulties. Buckingham: Open University Press. Booth, T. & Booth, W. (1998). Growing up with parents who have learning difficulties. London: Routledge. Dowdney, L. & Skuse, D. (1993). Parenting provided by adults with mental retardation. Journal of Child Psychology and Psychiatry 34, 1: 25–47. Emerson, R., Fretz, R.I. & Shaw, L.L. (1995). Writing ethnographic fieldnotes. Chicago: University of Chicago Press. Espe-Sherwindt, M. & Crable, S. (1993). Parents with mental retardation: moving beyond the myths. Topics in Early Childhood Special Education 13, 2: 154–174. Goodley, D., Lawthom, R., Clough, P. & Moore, M. (2004). Researching life stories: method, theory and analysis in a biographical age. London: RoutledgeFalmer. Hammersley, M. & Atkinson, P. (1995). Ethnography: principles in practice (2nd edition). London: Routledge. Kvale, S. (1996). InterViews: an introduction to qualitative research interviewing. London: Sage. Llewellyn, G. (1990). People with intellectual disabilities as parents: perspectives from the professional literature. Australian and New Zealand Journal of Developmental Disability 16, 4: 369–380. Llewellyn, G., McConnell, D. & Bye, R. (1995). Parents with intellectual disability: support and services required by parents with intellectual disability. Lincombe, NSW: University of Sydney. McConnell, D. (2001). Parents with intellectual disability and justice in the child protection process. Doctoral thesis. University of Sydney. Mercer, J.R. (1973). Labelling the mentally retarded: clinical and social systems perspectives. Berkeley: University of California Press. Plummer, K. (2001). Documents of life 2: an invitation to a critical humanism. London: Sage. Ronai, C.R. (1997). On loving and hating my mentally retarded mother. Mental Retardation 35, 6: 417–432. Sigurjónsdóttir, H. B. & Traustadóttir, R. (2000). Motherhood, family and community life. In: Traustadóttir, R. & Johnson, K. (Eds). Women with intellectual disabilities: finding a place in the world. London: Jessica Kingsley, pp. 253–270.

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Sigurjónsdóttir, H.B. & Traustadóttir, R. (2001). Ósynilegar fjölskyldur: Seinfærar/throskaheftar mædur og börn theirra [Invisible families: mothers with intellectual limitations and their children]. Reykjavík: University of Iceland Press. Taylor, S.J. & Bogdan, R. (1998). Introduction to qualitative research method: a guidebook and resource (3rd edition). New York: John Wiley & Sons. Traustadóttir, R. & Sigurjónsdóttir, H.B. (2004). Tre generasjoner utvecklingstörda mödrar og deras familjenätverk [Three generations of mothers with intellectual disabilities and their family support networks]. In: Barron, K. (Ed.). Genus och funksjonshinder [Gender and disability]. Lund: Studentlitteratur, pp. 83–101. Tymchuk, A. & Feldman, M. (1991). Parents with mental retardation and their children: review of research relevant to professional practice. Canadian Psychology 32, 3: 486–496.


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9 I am, and I am not: identity, a multifaceted concept and social phenomenon

9 I am, and I am not: identity, a multifaceted concept and social phenomenon Karin Barron There is only one way of seeing one’s own spectacles clearly: that is, to take them off. It is impossible to focus both on them and through them at the same time. A similar difficulty attaches to the fundamental concepts of science. We see the world through them to such an extent that we forget what it would look like without them… (Toulmin, 1961, p. 101).

Introduction Most of us would probably react with surprise (and, perhaps, delight) if someone at first encounter, and apparently in all seriousness, posed the question: “Who are you?” This question tends to have existential or deep overtones and can thus be something one is not used to discussing with a stranger. Its meaning can also be somewhat confusing. What is actually implied? What kind of person I am; that is, what is important to me, or my self, what I am like, or perhaps what I like; that is, my interests and preferences, or simply what my name is? Instead, we are more likely to be asked, and ask, as part of an introductory conversation, questions that directly deal with line of work, place of residence and so on. These approaches deal with an issue focused on in this chapter; the concept and social phenomenon of identity. This chapter represents one part of a sociological qualitative study with the above-referred-to overall question of “Who are you?”, or investigated issue of (self)identity constructions among Swedish women with intellectual impairments of different generations1. The empirical data consists of 20 qualitative inter-

1

I would like to thank the women who agreed to participate in this study, and the foundation Sävstaholm for its financial support.


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views with, and participant observations of, Swedish women with intellectual impairments aged 21–71. (For a further account of the methodological/ethical approach and findings of this study, see Barron, 2002, 2004b.) In this chapter, I discuss some meanings of the concept of identity and the social construction of intersected identities. The empirical data, as such, will not be referred to. However, some of the participating women’s accounts, interpreted as ambivalence, are discussed. The chapter concludes by suggesting the value for us social researchers of having a self-critical eye, or a “change of spectacles”, in order to deepen our understanding of different social phenomena, in this case identity constructions.

Some meanings of identity The concept of identity is frequently used in everyday language and is indeed in vogue in Sweden and some other countries, for instance in terms such as “identity crisis”, “searching for one’s identity” and “lack of identity”. Identity is also an example, as referred to in the introductory quotation by Stephen Toulmin, of “a fundamental scientific concept” in the social sciences. Toulmin (1961) emphasises the importance in science of critically scrutinising commonly used concepts (see also Barron, 2004b). The concept of identity has been referred to as a “seductive concept” since it risks being reified as an explanans, or independent variable (Simon, 2004). What, then, are some of the other ways in which this concept can be understood and defined? The distinction between collective or social, and individual or personal, identity is sometimes made in sociological/social psychological analyses of identity constructions. A common definition among European social psychologists is one where personal identity refers to people’s self-definitions as unique individuals, and social identity refers to the identity that derives from social-group memberships (Simon, 2004). Self-identity is sometimes used as a synonym for personal identity (see McNay, 2000). Lois McNay defines self-identity as the process through which “individuals through social interaction are actively participating in 164



a meaningful interpretation of the self” (p. 75). I adhere to this particular definition of self-identity in this study of women with intellectual impairments. A different understanding of identity is in terms of objective social categories. This understanding risks undermining the dynamic aspects of self-identity and consequently resulting in a reductive understanding. Identity, for instance gender identity, is then understood as fixed, which feminists have criticised as this implies a dichotomised understanding of gender identity (McNay, 2000). There are those who prefer to use the terminology (“collective” and) “individual” identity, as the use of personal identity risks being (mis)understood as asocial and as more authentically representing an inner self (Simon, 2004). While I argue that this (mis)understanding can just as well arise from using the term individual identity, I nevertheless agree with the importance of avoiding a static and fixed understanding of personal or individual identity. Also, it is important to acknowledge that individual and collective identities interrelate or are part of a dynamic interplay (Simon, 2004). Collective and individual identities can be in opposition to each other, but also mutually reinforcing and compatible (ibid.). A shared individual identity, which emphasises individual uniqueness and diversity, for instance, can be(come) a collective identity. An overriding ascribed collective identity of the women participating in this study is that of having intellectual impairments, or being disabled. Gender (as well as age, social class and so on) tends to have little impact on how the women are categorised by, for instance, Swedish service providers and decision-makers. They are thus explicitly categorised and identified in terms of a disabilitydetermining language. This categorisation also applies to social research. Although the issue of gender has become more common since the latter part of the 1970s, gender as a theoretical perspective is, however, still often absent in current social disability research. One consequence of this is that when disabled girls, women, boys and/or men are referred to, they tend to be given a genderless identity, for instance as “disabled people”. Furthermore, the social phenomena studied do not tend to be investigated from a gendered perspective. © The authors and Studentlitteratur

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The onset of the postmodern 1980s meant a change in the analysis of identity (Elliot, 2001). At the political level, new forms of political resistance emphasised human rights and agency. At the theoretical level, more emphasis was laid on the creative and dynamic dimensions of the self and on multiple identities (ibid.; see also Bauman, 1992). Postmodernist theorists suggest that collective identities are endangered or have even already been extinguished (Simon, 2004). Postmodern identities are understood as undergoing constant change, and the privileged status of individual identity is emphasised (ibid.). But this understanding of collective identities as having been rendered obsolete has been challenged. Bernd Simon, for instance, argues that while the (post)modern world strengthens individual identity, it also, as this study of women with intellectual impairments shows, provides opportunities for the construction of various alternative collective identities.

The social construction of intersected identities The “true me” In Sweden and some other countries, a common way of praising a person’s behaviour or personality is in terms of her/him always “being her- or himself”; that is, viewed as being natural and true. Also, when trying to calm someone down who is nervous about something, such as giving a public performance, for instance, we may say that: “as long as you are yourself, it will be a success”. Consequently, trying to be “someone else” is viewed as something negative, as an unnatural and artificial way to be(have). These everyday expressions reflect an understanding of there being one stable or static “true me” or, in other words, demonstrate an essentialising definition of identity. A different way of understanding identity is from a sociological/ social-psychological perspective. The understanding is then that it is through social interaction that identities are constructed through (re)negotiation among the interaction actors (Simon, 2004). Iden166



tity is thus rooted in socially structured practices, and people are actively participating in identity-construction processes. The issue of identity has provided an opportunity for sociologists to re-examine the relationship between the individual and society, and the different ways in which individuals are constructed as identities (Elliot, 2001). Gender, disability and age are socially constructed intersected phenomena (see Barron, 2002; 2004b). The social-constructionist perspective has been a controversial and influential development in the social sciences since the late 1960s (Miller & Holstein, 1993). Social constructionism is a complex theoretical perspective or field, which I won’t account for in any depth here. One point of importance that I wish to mention, however, is that I adhere to a more contextual constructionism, which focuses on the claim-making process but acknowledges assumptions about objective conditions (ibid.); that is, I acknowledge the assumption that there are disabled women of different ages.

Power Power structures and relations play an important part in the construction of identities. Or, put differently, identity is constructed by power relations between and within social groups (Simon, 2004), and is not a one-way relationship. Power is here understood as a continuous interactive process and embedded in all social relations. Feminists are concerned with power relations and with understanding how gender differences are transformed into inequalities. Feminist studies on the construction of identities have focused on embodiment, that is, a conception of gender as a lived set of embodied potentialities. This conception of gender deals with agency from the process of bodily inscription (McNay, 2000). A “from-top-to-bottom perspective” on power, whether related to gender or other social phenomena, tends, however, to overestimate the power of “the powerful”, and underestimate the power of “the powerless” (Roman, 2004). A not uncommon understanding in social research is that power implies the capacity to act (see, for instance, Ahrne, 1994). I argue that it is also important to take into account, not least when investigating identity constructions of © The authors and Studentlitteratur

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women with intellectual impairments, what opportunities there are to act. Or, put differently, the concern with power relations can serve as a reminder that theories of agency must take into account structural, institutional and intersubjective constraints (McNay, 2000).

Ascribed social status Ascribed collective identities affect the social status of different groups (and vice versa). The social status, or categorisation, as disabled can mean qualifying for various societal entitlements or services, and at the same time being subjected to stigmatisation (Stone, 1984). The women participating in this study lead their lives in what is sometimes referred to as an increasingly individualised society. Late modernity, de-modernisation and postmodernity are terms which describe recent social developments in a number of areas, including aspects of identity (Smart, 1993; Touraine, 2002). This idea, suggested by postmodern theorists, that people can choose among an increasing number of possible identities and ways of life, and achieve a certain status, has, however, been overemphasised (Ahrne, 1994). Ascribed status is still of the utmost importance in contemporary modern society and affects, for instance, class position (and vice versa), and indeed can dominate social life generally (ibid.). But individuals and groups subjected to the ascribed social status as disabled (or any other social status for that matter) are not passive recipients but can in different ways protest and strive towards changing this status. This is illustrated by Jenny Morris (1991) who takes a firm stand against a social status that involves stereotypical perceptions of the lives of disabled people. Morris objects to an (overly) simplistic notion of the experience of disability, as either negative or positive: We need courage to say that there are awful things about being disabled, as well as positive in which we take pride. If we feel strong enough to do this, we can truly challenge the way non-disabled people make judgements about our lives because in so doing we will take charge of the way in which disability is defined and perceived (Morris, 1991, p. 71).

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Morris’ statement above is interesting in many ways. The obvious way is perhaps the nuanced stand she takes against a stereotypical understanding of the experience of disability. But another interesting aspect, with regard to identity, is that she refers to “us” when referring to disabled people, or rather to women and men with different impairments, implying an identification with a unified collective of disabled people. I will come back to this underlying sense of “us”, or the collective identity as disabled, later in the chapter.

Ambivalence The women participating in this study have thus an overriding ascribed collective identity as having intellectual impairments and as disabled, or put differently, a taken-for-granted collective identity. This particular identity has also been one starting point in this study, which means that I, as a disability researcher, have also contributed to reinforcing this particular collective identity. A prerequisite for participation has been being a woman (of different generations) defined as having intellectual impairments and as being disabled. The findings show different approaches among the participating women to this ascribed collective identity and with regard to selfidentity. There are some younger women participating in this study whose approach to this ascribed collective identity involves taking a firm categorical stand against it, and other elderly ones who have internalised it fully as their exclusive identity. These two approaches will not, however, be accounted for in this chapter (see Barron, 2002, 2004b). The identified approach which I will here briefly discuss is one of ambivalence with regard to the ascribed collective identity of disabled and to self-identity. Ambivalence can be understood as a consequence of classifications (Götlind, 2002). Karin Götlind argues that this ambivalence can only be dealt with, or opposed to, using other classifications, which in turn also cause ambivalence. Drawing on the work by Zygmunt Bauman, Götlind refers to ambivalence in terms of a failure to categorise and as a normal aspect of language (ibid.; Bauman, © The authors and Studentlitteratur

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1995). Language is a central aspect of the study of identity (Strauss, 1997). Our terminology, or the symbolic screen through which the world is organised, is constantly under strain (ibid.). Language is doing (Scott-Hill, 2004), and how language is used affects identity constructions (and vice versa). Categorisations, such as “disabled women” and particularly “women with intellectual impairments”, do not only carry out anticipations but also those values that were experienced when encountering persons so categorised (see Scott-Hill, 2004). The way we speak and refer to different social groups mirrors prevailing social conceptions of who they are, and indeed who they are not. The ambivalence with regard to the ascribed collective identity as having intellectual impairments and as disabled can be illustrated by the following accounts by two participants in their 30s, when they were asked questions relating to their sense of selves: Not disabled, but perhaps I am after all since that is what they call me all the time. I don’t know. I am, and I am not. Me, I am a rocker. Rock music is everything. Words like learning impaired, disabled. That doesn’t quite feel like me. But I am often wrong about things, so.

How then can we understand the ambivalence illustrated above? There is of course no simple answer to this, as identity constructions are part of a complex process of social opportunities and individual actions (see Thomas, 1999). The two examples illustrate, however, the great impact that ascribed collective identities can have on people’s sense of selves. It is as if the women with this ambivalent approach argue with someone or something more powerful “out there” about who they are. This “voice” can be understood as representing prevailing conceptions with regard to who the women in question (primarily) are or should be. They have not chosen or asked for these particular collective (impairment or disability) identities. For these women, these interpretations of their selves are something they partly reject or construct themselves in opposition to. One way of understanding this ambivalence is that the women in question are striving to distinguish between themselves as unique

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individuals and the collective identification relating to the impairment or disability. In other words, while they are aware of being referred to primarily as having intellectual impairments or as being disabled, and have to some extent adhered to this identification, they nevertheless also reject it. Distinguishing the impairment/disability from the individual her/himself has also been focused on in another context, that is in a critical discussion on theories of labelling (Söder, 1989, 1990). Mårten Söder is critical of the common assumption of attitudes towards disabled people being prejudiced and suggests the use of ambivalence as a sensitising concept in furthering the understanding of non-disabled people’s conceptions of disabled people. Ambivalence can also be a useful sensitising concept in studies dealing with identity constructions among women (and men) with different impairments. All dichotomy is ill suited to understanding the complexity of manifold reality (Bauman, 1990). Ambivalence with regard to the ascribed collective identity discussed here can be understood as an outcome of, and reaction to, an exceptionless classification or a dichotomous “either-or” image (intellectual impairments or not, and disabled or not) of complex multifaceted identities (see ibid.). The disabled women in this chapter who had this ambivalent approach have grown up in an ideological climate in Sweden that has emphasised sameness, which primarily meant equal opportunities to those of non-disabled people. But their personal accounts show that they have experienced being treated as different in a negative sense, that is, being subjected to unwanted exclusion from arenas and pursuits of their choice. There are several examples given of decision-makers/personnel deciding “over the women’s heads” in which arenas and pursuits the women can participate. An important aspect of identity-construction processes of women with intellectual impairments in Sweden and some other countries is being ascribed the role of “eternal clients”. The disadvantaged position of people processed into clients forces them to conspire in their own management, in order to avoid offending personnel or providing negative evidence of their character (Lipsky, 1980). In other words, the women have to different extents been given a message about who they are, which can be described as the same, but different (see also Barron, 2001).


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United “we” stand The participating women referred to above do not take any pride in being disabled, as Morris emphasises, or identify with other disabled women or men generally, nor with women or men with intellectual impairments. They do, however, in Morris’ words, strive to take charge of the way in which disability is perceived, that is, of being perceived as of less importance with regard to “who they are”. Their personal accounts make visible the heterogeneity with regard to their selves (see Young, 1990). Does this then mean that they betray the disabled people’s movement associated with a proud identification as different and disabled (see Reeve, 2004), in that their struggle involves achieving another identity than that as disabled? My stance is striving towards avoiding what has been referred to as “a normative trap” in social disability research (Söder, 1995). Instead of judging or evaluating the (identity) ambivalence identified in some of the participating women’s accounts as a right or wrong approach, my interest is focused on analysing “their” social reality. This does not mean that I can be objective. As researchers, we cannot “delete”, or leave behind, our ideological values and own experiences. It is as difficult, or rather as impossible, as pulling oneself up by the hair. I argue nevertheless that we need also to be wary of the fact that the normative implications of so-called “emancipatory research” can serve to discredit some social groups who do not adhere to current (politically correct) ways of identification.

A change of spectacles Let us return to the initial cited words by Stephen Toulmin, where he emphasises the importance in research of critically scrutinising commonly used concepts, or for us researchers to “take our spectacles off”. In this chapter I have focused on identity as a multifaceted concept and social phenomenon. The ambivalence identified in some of the participating women’s accounts has brought to the fore how important it is that we as researchers have a self-critical eye with 172



regard to our part in the construction and reinforcing of certain immobile collective, as well as individual, identities, which may be the very same that some women (and men) are striving to free themselves from. Perhaps we need to further critically scrutinise and analyse our own notions of who “I”, “you”, “us” and “them” are. The women’s accounts can serve to remind us that identity constructions are indeed complex, and that an important part of the process involves constructing ourselves in opposition to prejudiced or stereotypical perceptions inherent in our ascribed collective identities. In other words, de-identification can be a part of constructing meaningful interpretations of our sense of selves. The meanings of, and relations between, impairment and disability have for some time been subject to a great deal of discussion, particularly in British social research, or in so-called disability studies (see, for instance, Corker, 1998; Reeve, 2004). These discussions, not least by feminist researchers, relating to “the social models of disability”, have served to problematise and critically scrutinise some “sacred cows” with regard to conceptions of impairment and disability (see Barron, 2004a). The importance of acknowledging impairment-related experiences, the body and social diversity has been discussed (Barnes & Mercer, 2004). But studies which critically analyse the very framework, or social reality, within which these discussions take place are less common. I am not suggesting that we strive towards doing away with impairment and disability as fundamental concepts. What I am suggesting, however, is that we take the ambivalence identified in some of the participating women’s accounts seriously, with regard to their ascribed collective identity as having intellectual impairments and being disabled. Distinctions become problematic when they are “frozen” (Håkanson, 1988). Kaj Håkanson makes the important point that distinctions then decide what kind of knowledge we acquire, and what kinds of question can be asked. “Frozen” distinctions, such as disabled and non-disabled, can easily be understood as unquestionable or definite, and of imperative character (see ibid.). We tend to be seduced by certain ideas with regard to “the best” or “the right” conceptions, methods and theoretical perspectives of the day in social research. Our particular ideas, or “spectacles”, do © The authors and Studentlitteratur

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indeed assist us in seeing and analysing certain social phenomena. But these do also limit us and hinder us from seeing others. An inherent paradox in so-called “emancipatory” disability research (see also Mercer, 2004) is that while it contributes to making the voices of disabled women and men heard, it also risks overemphasising differences between disabled and non-disabled women and men. In retrospect, this study on identity constructions could have been done differently. I could, for instance, have included women with and without intellectual impairments, and perhaps thus more easily seen other categories and individual and collective identities being constructed. These kinds of alternative study, or “change of spectacles”, may well be one step towards more comprehensive social theories (see also Watson, 2004). Or, put differently: … a proper sense of growth and development of our ideas will come only if we are prepared to unthink them… (Toulmin, 1961, p. 101).

References Ahrne, G. (1994). Social organizations: interaction inside, outside and between organizations. London: Sage. Barnes, C. & Mercer, G. (Eds) (2004). Implementing the social model of disability theory and research. Leeds: The Disability Press. Barron, K. (2001). Autonomy in everyday life, for whom? Disability & Society 16, 3: 431–447. Barron, K. (2002). Who am I? Women with learning difficulties (re)constructing their self-identity, Scandinavian Journal of Disability Research 4, 1: 58–79. Barron, K. (2004a). Genus och funktionshinder. In: Barron, K. (Ed.). Genus och funktionshinder [Gender and disability]. Lund: Studentlitteratur. Barron, K. (2004b). Womanhood and disability: oppression under scrutiny. In: Kristiansen, K. & Traustadóttir, R. (Eds). Gender and disability research in the Nordic countries. Lund: Studentlitteratur. Bauman, Z. (1990). Thinking sociologically. Oxford: Basil Blackwell. Bauman, Z. (1992). Intimations of postmodernity. London: Routledge. 174



Bauman, Z. (1995). Modernity and ambivalence. Cambridge: Polity Press. Corker, M. (1998). Deaf and disabled or deafness disabled? Buckingham: Open University Press. Elliott, A. (2001). Concepts of the self. Cambridge: Polity Press. Götlind, K. (2002). Värderingskonflikter i praktiken: Hantering av ambivalens vid en neonatal intensivvårdsavdelning [Dilemmas in practice: handling of ambivalence in a neonatal care unit]. Acta universalis, Uppsala universitet. Stehag, Förlags ab Gondolin. Håkanson, K. (1988). Den skapande tomhetens bild: Om kunskap och kärlek [The creative image of emptiness: on knowledge and love]. Stockholm: Prisma. Lipsky, M. (1980). Street-level bureaucracy. Dilemmas of the individual in public services. New York: Russell Sage Foundation. McNay, L. (2000). Gender and agency: reconfiguring the subject in feminist and social theory. Cambridge: Polity Press. Mercer, G. (2004). From critique to practice: emancipatory disability research. In: Barnes, C. & Mercer, G. (Eds). Implementing the social model of disability theory and research. Leeds: The Disability Press, pp. 118–137. Miller, G. & Holstein, J.A. (1993). Constructing social problems: context and legacy. In: Miller, G. & Holstein, J.A. (Eds). Constructionist controversies: issues in social problems theory. New York: Aldine De Gruyter, pp. 3–8. Morris, J. (1991). Pride against prejudice. Transforming attitudes to disability. London: The Women’s Press. Reeve, D. (2004). Psycho-emotional dimensions of disability and the social model. In: Barnes, C. & Mercer, G. (Eds). Implementing the social model of disability: theory and research. Leeds: The Disability Press, pp. 83–100. Roman, C. (2004). Familjen i det moderna – Sociologiska sanningar och feministisk kritik [The family and modernity – sociological truths and feminist critique]. Malmö: Liber. Scott-Hill, M. (2004). Collectivising experience and rules of engagement: close(d) encounters in disability research. In: Barnes, C. & Mercer, G. (Eds). Implementing the social model of disability: theory and research. Leeds: The Disability Press, pp. 157–171. Simon, B. (2004). Identity in modern society: a social psychological perspective. Oxford: Blackwell Publishing. © The authors and Studentlitteratur

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Smart, B. (1993). Postmodernity. London and New York: Routledge. Stone, D.A. (1984). The disabled state. Philadelphia: Temple University Press. Strauss, A.L. (1997). Mirrors and masks: the search for identity. New Jersey: Transaction Publishers. Söder, M. (1989). Disability as a social construct: the labelling approach revisited. European Journal of Special Needs Education 4, 2: 117–129. Söder, M. (1990). Prejudice or ambivalence? Attitudes toward persons with disabilities, Disability, Handicap & Society 5, 3: 227–240. Söder, M. (1995). Var står forskaren? Om den sociala handikappforskningens möjligheter och begränsningar [Where does the researcher stand? On the possibilities and restrictions of social disability research]. Socialmedicinsk tidskrift 6–7: 231–237. Thomas, C. (1999). Female forms: experiencing and understanding disability. Buckingham: Open University Press. Toulmin, S. (1961). Foresight and understanding: an enquiry into the aims of science. Westport, Connecticut: Greenwood Press Publishers. Touraine, A. (2002). Kan vi leva tillsammans? Jämlika och olika [Can we live together? Equal and different]. Gothenburg: Bokförlaget Daidalos AB. Watson, N. (2004). The dialectics of disability: a social model for the 21st century? In: Barnes, C. & Mercer, G. (Eds). Implementing the social model of disability: theory and research. Leeds: The Disability Press, pp. 101–117. Young, I. M. (1990). Justice and the politics of difference. Oxford: Princeton University Press.

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10 Minority politics and disability discourse at global deaf events

10 Minority politics and disability discourse at global deaf events Per Solvang, Jan-Kåre Breivik and Hilde Haualand

Introduction Deaf people have traditionally been categorised as disabled. They are one of the classic groups, on a par with the blind, physically disabled and intellectually disabled. In their role as disabled, deaf people are put under considerable pressure to communicate by using the oral method: articulation and lip-reading. In addition, it is emphasised that deaf people should be rehabilitated with the best possible hearing aids. Deafness is also perceived in these terms by most national welfare states and transnational organisations such as the EU (Corker, 1998). As a disability is not, however, the only way to perceive deafness. While many hearing, hard-of-hearing people and parents of deaf and hard-of-hearing children accept the idea of the deaf as disabled, deaf people themselves often take a different view of deafness. Deaf national and transnational organisations work together to define deaf people as a linguistic and cultural minority. This is a minority discourse where deaf people see themselves as historically oppressed by medicine and special education. The perception of being a minority cuts across national boundaries and the emphasis on sign language as the most dignified language unites deaf people around the globe. There is a long tradition among deaf people of meeting in transnational contexts. The first World Games for the Deaf were arranged in 1924 and the first World Congress for the Deaf was held in 1951. There are also regional events, such as the Nordic Culture Days, which have been held since 1907. Deaf people have established a practice of communication at transnational meeting places, based partly on common iconographic features in different sign languages and partly on some standardised international signs © The authors and Studentlitteratur

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based on national sign languages. In addition, American Sign Language has a certain status as a lingua franca among sign-language users. The main goal of this article is to demonstrate how transnational events provide important social experience for the attendees and to explore how deaf politics work at such events. We will illustrate how an understanding of deafness, inspired by a minority discourse, has been established. Our analysis will, however, emphasise that deaf people cannot avoid the disability discourse that represents a physical pathology which medicine works to measure, prevent and rehabilitate. Our question for research is how this double agenda works at transnational deaf events.

Perspective The view of deafness as a pathological deviance has been used as the basis for the distribution of scarce resources within welfare states, such as technical aids, occupational rehabilitation and interpreter services. Access to such legally based privileges has been regulated by medical diagnosis. The view of deafness as a pathology has thus justified people’s entitlement to important welfare benefits (Stone, 1984; Corker, 1998; Solvang, 2000). A minority discourse has become increasingly attractive in disability and deviance studies. Its political variant, “the social model”, has been developed in the UK. There, attempts have been made to define disability as something that causes certain bodies to become economically and politically oppressed. Disability studies deals first and foremost not with diagnosis and rehabilitation but with oppression and discrimination (Oliver, 1990; Shakespeare, 1996). From this perspective, the situation of the disabled is perceived as on a par with that of other discriminated-against groups, such as ethnic minorities, homosexuals and women (Fraser, 1995). Analytically, it is therefore important to link the study of disability to feminist theory, gay studies and queer theory, together with theory formation in ethnicity studies. Within the framework of the social model there has also been a theoretical attempt to identify deaf people and their interests as a linguistic and cultural minority (Corker, 1998). 178



The minority discourse relating to the perception of disability also has a cultural variant. The most important contributions so far have been developed in the USA. Here, the emphasis has been on perceiving disability as a cultural phenomenon. In his classic study of the Freak Show culture, Robert Bogdan draws attention to a valuable community among the disabled with physiologically abnormal body forms (Bogdan, 1988). This has resulted in a number of studies on how disability as a cultural phenomenon is represented in film and literature (Thomson, 1996; Davis, 1997). This perspective is also reflected in Goffman’s book Stigma (1968) where he points to stigmatised groups, such as gypsies and Orthodox Jews, who establish positive self-images through perceiving an us who are different from the others. Disability as culture is the main perspective in the present discussion, but the main conclusions and the analysis will also take into account pathology and social oppression as key categories in the understanding of deaf people’s situation. A separate field of study has also been developed called Deaf Studies. The category of disability does not play any active role here. The clearest difference between disabled people and deaf people is that the disabled want integration and access to society at large. These are central issues in their struggle, while deaf people give them less priority. Segregation is more important to deaf people, at least for the foreseeable future, and only gradually will it become relevant for deaf people to cooperate with the disabled in addition to other oppressed groups (Davis, 2003; Ladd, 2003).

A method for studying transnational events This article is based on material from the research project “Global Connections in Deaf Worlds” (Breivik, Haualand & Solvang, 2002). The study is a joint project between two anthropologists and a sociologist. The transnational community amongst deaf people manifests itself at different places and only for short intervals of time. Our research strategy has therefore been to carry out team-based fieldwork in conjunction with the relevant events that took place within the project from 2001 to 2003. Our team carried out five short-term fieldwork studies at the following geographical locations where the transnational deaf community manifested itself: © The authors and Studentlitteratur

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• • • • •

Summer Games for the Deaf (Deaflympics), Rome 2001 Nordic Culture Days, Ål 2002 Deaf Way II (Congress), Washington DC 2002 Winter Games for the Deaf (Deaflympics), Sundsvall 2003 The World Congress for the Deaf, Montreal 2003

The size of the events varied considerably. The Summer Games had 5,000 registered participants and spectators, and an estimated 10,000 visiting deaf tourists. The Nordic Culture Days had 300 participants, the Deaf Way II had 9,000 and the World Congress in Montreal had 2,500. An unknown number of tourists came to the congress sites as well. We carried out our fieldwork by participating as much as possible in both the official and informal parts of the events we visited. All the events had an organised programme over the course of the day and cultural performances in the evenings. In addition to watching theatre and films in the evenings, the participants and visitors spent a lot of time in bars, discotheques and clubs. Some were partially organised by the deaf hosts, while other deaf spaces arose more spontaneously. While carrying out our fieldwork we coordinated our efforts by having daily meetings where we summarised our recent experiences and planned for the coming days. Field notes were written as we went along and distributed amongst ourselves. These were discussed and commented upon in additional notes.

The temporary structure The establishing phase: In Breivik’s book Deaf identities in the making (in press), there is a fascinating account of the author’s plane trip to the World Congress for the Deaf in Brisbane, Australia in 1999. He had to pass through many international airports on his journey. When he started in Oslo, Breivik noticed more people than usual communicating in sign language, and even more in Copenhagen. During his next stopover in Singapore there was without doubt an unusual number of people communicating in signs. When he arrived at his last stop in Brisbane there were deaf people and sign language everywhere he turned. This pattern was also evident when our research team travelled to Rome and Washington DC. 180



Even metropolitan places like Rome and Montreal are affected by the presence of deaf people. The presence of so many sign-language users changes the visual impression of the place. The effect is especially apparent at conferences that have a clearly defined main site. In these instances the surrounding area is full of deaf people using sign language. Service workers, such as waiters, shop clerks and hotel personnel, start to use visual gestures and quickly pull out their pens and paper. They develop an orientation where deaf people become commonplace. Deaf people get used to this and begin to expect service on their own terms. In certain instances, bars and cafés can be completely taken over by deaf people for a week or two. The main phase: The events become arenas for confirming and developing one’s identity and self-understanding as a deaf person. For many, especially young deaf people, the space for social possibilities has a primary significance. Many are not registered as participants in the official programme, neither in connection to the congresses nor as spectators at the sporting events. What interests them is the possibility of meeting other deaf people. Generally, a deaf person would have the propensity to make contact if one or more sign-language users showed up, no matter who they were. At the large events, however, the multitude of deaf people makes this less relevant. Contact patterns become tied more to interests and common meeting places, for example theatre productions and soccer games, or bars with other young, single deaf people. The events are also arenas for crossing national borders and developing a transnational community. At a micro-level, such processes occur when young deaf people meet potential partners from all over the world. At a more institutional level, we observed crossovers at many opening and closing ceremonies. The opening ceremonies generally focus on the fact that people from all over the world have gathered there, while the closing ceremonies to a large extent thematise the deaf community. A clear illustration of this took place during the Summer Games in Rome. At the opening ceremony athletes from different nations marched into the stadium in separate groups led by athletes carrying their nation’s flag, in the traditional Olympic style. A similar set-up was planned for the closing ceremonies; however, the national patterns were dispersed as © The authors and Studentlitteratur

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the athletes blended together with each other and completed the march of honour into the stadium in a more mixed manner. This process was also mirrored in the bleachers where the national spectator groups were far more diffuse than they had been during the opening ceremony. The closing ceremonies are the introduction to the final phase: the deaf city is packed away and farewells are made. The journey back to everyday life surrounded by hearing people follows a reversed pattern. At the airport, for example in Rome, you see many deaf people; by the time you change planes in Copenhagen there are only a few deaf people to be seen, and by the time you arrive home in Oslo it is back to the regular everyday life. This transition can be painful. The trials of everyday life are particularly difficult during the first couple of days. You begin to wonder whether home was actually in Rome or Montreal, and whether a home only comes into existence for a few weeks every other year. Something has happened to those who were there; they have experienced a sense of community and what real communication can be about. This type of event is, therefore, important as a demonstration of culturebased understandings of deaf people. This is a different perspective on deafness, where the disability discourse becomes rather unthematised and represents only a vague shadow. Deafness defined as kind of pathology is, however, still present, not least through deaf people’s own definition of their situation. The pathology/rehabilitation issue is hotly debated both at the congresses and during the sports events, though more subtly in the latter arenas.

Minority politics At the World Congress in Montreal the first opening speech was given by an Argentinian woman who was active in deaf politics all over the world. She spoke about her deaf father who in 1977 got the chance to attend the World Congress in Paris and how much this had meant to him. Bringing the subject back to the present, she told of two Argentinians who were present in the hall and how excited they were about everything they were experiencing at the congress. Her main message was, however, about the problem with 182



doctors all over the world who force deaf people into becoming second-class citizens through oral communication and hearing aids. This set the tone for the entire conference. She struck to the root of the major political theme in the deaf world: the struggle for sign language and the appreciation of deafness as a culture and the struggle against integration and medical rehabilitation. The reference points are Milan 1880 and CI (Cochlear implants). This is a figuration of a clear enemy. The Second International Congress of Education of the Deaf in Milan was an international conference that took place in 1880. Here, professionals involved in teaching deaf people decided that the Oral Method was the best; that is to say, that deaf people should concentrate on articulation and lip-reading. This struck a sympathetic note with the gradually developing welfare state; the 20th century was full of stories illustrating the difficulties experienced by deaf people because of the prohibition against using sign language. Nevertheless, the story is also one of resistance and victory on many fronts (Ladd, 2003). CI is a high-tech hearing aid that is surgically implanted into the ear, mostly in deaf and hearing-impaired children. Many deaf people are critical as to what extent it creates or restores hearing and they stress that sign language is the only dignified mode of communication (Davis, 2003). Many of the presentations at the congresses are dominated by the themes of making a scapegoat of the enemy and mobilising deaf people to fight. The political presentations at the world congresses are given by deaf people. They encourage the struggle against oralism and medical rehabilitation and support sign-language communities as the only working solution for deaf people. The linguistics or social science-based presentations are held by both deaf and hearing people. They have to a great extent a normative position that is merging with other minority-language projects. In some of these presentations, deaf and disabled people are viewed within the context of a broad formation of the sort that a lecturer at the World Congress in Montreal designated “equality seeking groups”, and where deaf people first and foremost perceive themselves as a minority with sign-language communication as the common denominator. The last group of presentations is of a professional social-service genre, which to a lesser extent represents an explicit minority orientation. This group finds itself in a problematic situa© The authors and Studentlitteratur

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tion in the congressional context. Tensions arise, both when there are presentations about social treatment programmes directed at deaf people and when there are hearing social-service professionals present who believe they possess a professional authority to advise deaf people about what is best for them. In these presentations deaf people are accentuated as clients with an accompanying expert profession, a construction representing the core of the welfare state’s construct of the disabled.

The politics of sport When it comes to sporting events, the sign-language-based definition of deaf people is not sufficient. During the Summer Games in Rome, we chose to follow the soccer tournaments as closely as possible. Through some contacts we had made, we focused primarily on the team from the USA. As a result we attended a somewhat unimportant final game for seventh place in the championship play-offs where the USA played against Iran. One of the Iranian players was struck on the side of the head by a hard-kicked ball. This made it necessary for him to remove a hearing aid he had in his ear. The umpire’s reaction was sharp. This was an illegal offence; the game was called off and the USA was given the victory. This exemplifies how deaf politics is evident at sporting events as well. The reason for the prohibition against hearing aids is, firstly, that there is a specific requirement that a person’s hearing loss must be at least 55dB in order to be able to participate: a person’s hearing level at this maximum range could be improved by a hearing aid. Yet, and equally importantly, hearing aids also symbolise a rapprochement with the hearing world, which in some contexts can be relevant. However, at an event for deaf people only, which is carried out on deaf people’s own terms and is intended to strengthen the solidarity of sign-language users, hearing aids are problematic symbols. Altogether we see three focal points for the political dimension at the sporting events. The first is the requirement of a minimum of 55dB-hearing loss in order to be able to participate. This is strictly enforced through random checks where the diagnoses the athletes

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brought from home are checked by means of independent measurements carried out under the direction of the organisers. This is controversial and problematic, but for pragmatic reasons this medically defined dB-limit has remained untouched (Stewart, 1991). The second political dimension that is evident in deaf sports is about decision-making and internal control. Deaf sports at the international level have had bad experiences working together with international sports organisations for the disabled. Donalda Ammons, President of the International Committee of Deaf Sports (CISS), tells us, for instance, that they have received little understanding of their need for interpretation services. On the other hand, she continues, they have recently gained acceptance from the International Olympic Committee (IOC) to represent a group outside the sports organisations for disabled people. Thirdly, communication and language are also thematised in deaf sports. Sporting events recruit broadly among deaf and hard-ofhearing people who meet the hearing-loss requirement, and not just among the politically minority-conscious users of sign language. The political dimension of communication therefore becomes to a large extent more apparent in direct interaction, in contrast to how this unfolds at congresses. One can, for instance, observe deaf people making disparaging remarks about known deaf individuals who have been observed as orals in practice. This politicalisation became publicly evident during the Winter Games at Sundsvall. A banner was hung up that protested against the American ice hockey team’s limited use of sign language when communicating (“Orals don’t belong here, ASL [American Sign Language] does”). The banner was quickly removed and the incident became a hot topic, but was never discussed officially. Some people we talked to thought that sign-language users, rather than exerting direct criticism, should focus more on the positive aspects of being part of a sign-language community and in that way stimulate a reorientation amongst orally trained deaf people. The figuration of an enemy is, thus, also evident in deaf sports. Hearing aids and oralism are manifestations of “the unwanted deafness”. Yet, at the same time, the deaf community is prepared to take the enemy’s technology into use for their own purposes when it involves creating equal conditions for their athletes.


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Closing discussion The tense relationship between “deafness as disability” and “deafness as minority” is a basic structure that continually finds new formations. We will make this the focus of our closing discussion. At the World Congress, the long-standing struggle against evil forces was foregrounded. There were references to Milan 1880 and to the medical establishment’s continuing efforts to maintain the view of deafness as a pathology. A more concrete fight against the representatives of oralism is being waged at sporting events. This constitutes a united picture of the scapegoat that establishes a reference point for building solidarity and for establishing an identity that is clearly different from any other obvious alternative. Thus, the discourse on the medical establishment’s pathological rehabilitation of disability becomes an ambiguous figuration that deaf people distance themselves from and through which they define themselves. This establishes a correct kind of deafness that is promoted and a deviant kind of deafness that is opposed. The use of scapegoating to promote one’s own social integration and solidarity is a social pattern that is thematised in a number of other social contexts. We find it in Christie and Bruun’s (2003) analysis of drug abuse. They set up a number of criteria for a socially integrating scapegoat (Christie & Bruun, 2003). The enemy must not, for instance, be a serious threat to the community that harbours the scapegoat. Furthermore, it should be possible to categorise the enemy as very dangerous, and those who fight against it must be confident in their fight. Criticism can wait. These criteria concerning the enemy’s social role are interesting in relation to the deaf case. It is especially relevant to ask how much space is allowed for different forms of deafness in the transnational political-minority definition of deaf people’s interests. How dangerous is CI and how should criticism and challenges be managed from within? Are CI-users manipulated into a false consciousness by the welfare state’s medical complex, or are the users reflexive actors who go for the options available to them in late modern societies? Through such questions one can say that the intense use of scapegoating is linked to a relatively solid conception of the good deaf life. The sporting events represent a clear example of deaf people, as a community founded on the use of sign language, nevertheless mak186



ing use of a particular medical technology. The objective measurement of the amount of hearing loss is a tool used to draw a line between those who should be able to and those who should be disabled from participation in deaf sports. This serves as a revealing illustration of how deaf people are dependent on their pathological status in certain circumstances. They can be criticised for being inconsistent in their minority and anti-pathological projects and for continuing to be subdued by the medical discourse. Another equally interesting interpretation we would like to point out is that deaf people, after a thorough evaluation, hold on to the use of a certain medical-based technology. In sports, deaf people themselves were in control and chose the hearing test as a tool to ensure fair play in a competition situation. This can also be viewed as part of the discourse on sports. In a number of sports, athletes are sorted by measuring and weighing, for example in combative sports, such as wrestling and boxing, and in strength sports, such as weight-lifting. In the light of this we can say that medical pathology is a problem in that it represents an oppressive and paternalistic discourse, but also serves as a resource, as in so many contexts, when it comes to solving a particular problem. Here, medicine is used as a categorisation tool that is concerned with creating equal playing conditions. Hearing becomes a criterion on a par with height and weight to which one need not attach any negativity, but where measuring the difference is relevant in certain contexts. Conversely, it does not seem that the use of a diagnostic-based criterion for participation is an ideal solution either, but it is the best one available at present, and one which is quite possible to live with for an organisation that promotes a community founded on the use of sign language. Deaf people are implementing a project where self-understanding is built around a minority-language position. But this project cannot be understood without reference to disability and pathology. It first comes in the form of the enemy-figuration that is central to how deaf people define themselves, their history and their ongoing struggle for recognition as a linguistic and cultural minority. This is inevitable considering how long the oppression of sign language was a part of the childhood of so many deaf people today, and considering that the medical establishment presses on with new technological developments from the starting point that deafness is an © The authors and Studentlitteratur

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unwanted pathological defect. The amount of importance that should be attached to an analysis of this enemy-figuration may prove controversial in social research’s dialogue with deaf people. We believe this is important for self-understanding and as an arena for further investigation. An important criticism of the disability discourse, both historically and in our time, is taking place and is being carried out by those who themselves are among the categorised. Conversely, a reflection on the use of scapegoating and its function will be of importance to deaf people’s further efforts to improve their situation.

References Bogdan, R. (1988). Freak show. Presenting human oddities for amusement and profit. Chicago: The University of Chicago Press. Breivik, J. (in press). Deaf identities in the making. Metaphors and narratives in translocal lives. Washington DC: Gallaudet University Press. Breivik, J., Haualand, H. & Solvang, P. (2002). Rome – a temporary deaf city! Deaflympics 2001. Bergen: Stein Rokkan Centre for Social Research (Working Paper 2–2002). Christie, N. & Bruun, K. (2003). Den gode fiende. Narkotikapolitikk i Norden [The useful enemy. Drug policy in the Nordic countries]. Oslo: Universitetsforlaget. Corker, M. (1998). Deaf and disabled, or deafness disabled? Towards a human rights perspective. Buckingham: Open University Press. Davis, L.J. (Ed.) (1997). The disability studies reader. New York: Routledge. Davis, L.J. (2003). Bending over backwards. Disability, dismodernism and other difficult positions. New York: New York University Press. Fraser, N. (1995). From redistribution to recognition? Dilemmas of justice in a “post socialist” age. New Left Review, July–August 1995: 68–93. Goffman, E. (1968). Stigma. Notes on the management of spoiled identity. Hammondsworth: Penguin Books. Ladd, P. (2003). Understanding Deaf culture. In search of deafhood. Bristol: Multilingual Matters. 188



Oliver, M. (1990). The politics of disablement. Basingstoke: Macmillan. Shakespeare, T. (1996), Disability, identity, difference. In: Barnes, C. & Mercer, G. (Eds). Exploring the divide. Illness and disability. Leeds: The Disability Press. Solvang, P. (2000). The emergence of an us and them discourse in disability theory. Scandinavian Journal of Disability Research 2: 3– 20. Stewart, D.A. (1991). Deaf sports, the impact of sports within the deaf community. Washington DC: Gallaudet University Press. Stone, D. (1984). The disabled state. Philadelphia: Temple University Press. Thomson, R.G. (Ed.) (1996). Freakery. Cultural spectacles of the extraordinary body. New York: New York University Press.


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III Categorisation and Disability


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11 Biological and social aspects of intellectual disability

11 Biological and social aspects of intellectual disability Karin Sonnander

Different perspectives: what one sees and how one sees things The phenomenon of intellectual disability can be described and examined from many perspectives. What is common among the various perspectives, however, is that intellectual disability is characterised as a deterrent to intellectual development that can be observed from early childhood. The study of intellectual disability is clearly multi-disciplinary in design and content. Workers from various scientific fields all view intellectual disability as a meaningful research field, using their own language, terminology and explanatory models or points of view to describe and explain intellectual disability. Different outlooks exist even within the healthcare and social-service system, a sector that specifically deals with people with intellectual disabilities. Not surprisingly, the choice of a particular perspective will naturally affect what one sees and how one sees things. When seeking to define a group of people with intellectual disabilities, three perspectives appear most prominent: the epidemiological perspective, the relativistic perspective and the constructivistic perspective. A perspective (or a model, if so preferred) is an analytical tool that can be used in this connection to help describe and/or explain a phenomenon. It is especially noteworthy that this is not tied exclusively to a specific scientific subject matter or group of subject matters.

An epidemiological perspective From an epidemiological approach, intellectual disability is mainly a condition characterised by arrested intellectual development, a © The authors and Studentlitteratur

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condition that may be observed already in childhood. It is a result of a biological defect, particularly of the central nervous system. The reason for this specific or more general biological defect could be either genetic or caused by injuries in connection with, for example, pregnancy or childbirth. From a medical perspective, different remedies are initially sought as a means to cure or alleviate an individual’s injury and to prevent people from suffering similar traumas in future. Even in such social science disciplines as pedagogy and psychology, intellectual disability is viewed as the outcome of a biological defect. The emphasis is on how learning, education and training can be made adaptable, to map out cognitive processes and behaviour functions in people with intellectual disabilities and to try to describe and predict their course of development. The individual’s ability, or lack of ability, is still the topic of central concern. The immediate surroundings and their conditions are considered particularly important, especially when a group or an individual’s course of development is studied. In this approach, consideration is given to the proximal surroundings, such as parental care and attitude, and the distal surroundings, such as the parents’ educational background and group affiliation.

International classification systems From a medical and epidemiological viewpoint, it is common to classify diseases and injuries into some kind of operationalised system. According to all current diagnostic systems, intellectual disability is classified on the basis of two criteria: reduced intellectual functioning and concurrent reduced adaptive behaviour or social ability. The major classification systems of relevance to the field of intellectual disability are the International Statistical Classification of Diseases and Related Health Problems (ICD-10) (WHO, 1992), the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) (American Psychiatric Association, 1994), Mental Retardation: definition, classification and systems of supports – 10th edition (American Association on Mental Retardation, 2002) and the International Classification of Functioning, Disability and Health (ICF) (WHO, 2001). 194



The ICF is a revised version of the International Classification of Impairments, Disabilities and Handicaps (ICIDH) (WHO, 1980). The ICIDH is based on a relative definition, i.e. the interplay of two types of parameter: those that have to do with biological injury and those that have to do with social surroundings or the environment. Handicap is seen as a consequence of disease resulting in reduced functioning. Consequently, reduced functioning is regarded as a characteristic related to the individual as well as the specific way this person functions. The ICF classifies functioning in terms of Body Functions and Structures, Activities, Participation and Contextual Factors, conceiving functioning as an interactive person-environmental process. The concept of handicap is abandoned. The ICF system is primarily a general conceptual tool for creating models of disability. However, it extends beyond the medical perspective in that it includes a societal and environmental perspective. The ICF can be used without reference to a clearly identified disease or aetiology (American Association on Mental Retardation, 2002).

A relativistic perspective of intellectual disability To simplify, intellectual disability is typically defined in three ways: psychological, social and administrative. Groups of people with intellectual disabilities are defined using psychometric, social and administrative criteria. A psychological definition implies a low intellectual level that is commonly measured psychometrically by intelligence testing. International practice in this respect has thus far been to use two standard deviations below the test-score mean as the critical limit (corresponding to IQ < 70). The degree of adjustment – or put differently – how individuals meet the demands of their surroundings is a central notion in the social definition. From this standpoint, social ability is usually seen in this context as one ability among others, i.e. something that individuals have to varying extents. Scales have been developed to measure social ability, which is also referred to as the ability to © The authors and Studentlitteratur

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adjust or an individual’s adaptive ability. Social ability is naturally related to intellectual ability and is therefore conceived of as an individual attribute (Doll, 1953,1965; Magne & Wahlberg, 1955; Nihira et al., 1974). Because the demands placed on a person differ at different ages, the social criterion for intellectual disability is given different meanings at varying times in the individual’s life. The corresponding argument applies for different life situations and social-cultural settings. An association can be noted between the degree of intellectual ability, as measured with intelligence tests, and the degree of social ability, as measured with scales or determined in some other way. The association between intellectual ability and social ability is, however, far from perfect, i.e. there are people with intellectual abilities below IQ = 70 who nevertheless meet the demands of their surroundings for social adjustment (Heber, 1961; Sonnander, Emanuelsson & Kebbon, 1993). The administrative definition is based primarily on two considerations: one is the individual’s need for support and help, while the other is how the community’s help system is built up and which routines moderate the distribution of services. Because of poor achievement in intelligence tests and the social criterion, these individuals are judged to need help and support, as well as needing special services. Consistent with these reasons, such individuals make up the group of people with intellectual disabilities. In practice, however, the administrative criterion is only partly a weighting of psychological and social criteria. Not all people who fulfil the psychological and social criteria, and who are considered to need support, actually receive services. It is common that the administrative definition is used to make a final demarcation of intellectual disability. National statistics used by various countries are based on an administrative definition of intellectual disability.

How many people are there with intellectual disabilities? Epidemiological studies in various regions of the world have confirmed that nearly 2% of the population (corresponding to two standard deviations below the average intelligence level) are intellectually disabled when based on results from intelligence tests or 196



when other comparable estimations served as the diagnostic criteria (cf. Åkesson, 1961; Granat & Granat, 1973, 1975; Richardson, Koller & Katz, 1984; Sonnander et al., 1993). In general, a larger variation and typically smaller proportion of people with intellectual disabilities are found in a population in which a social criterion is used rather than establishing the sample solely on a psychometric criterion. In Sweden and also in Norway, about 0.4% of the population is administratively defined as intellectually disabled, whereas the proportion in the USA can vary between 1 and 3%. A majority (75%) of the American group have milder forms of disability, whereas only 25% are severely or profoundly disabled. The corresponding distribution in Sweden is the reverse, i.e. 75% of those individuals who receive special services are mildly, profoundly or severely intellectually disabled according to the most reliable ratings available (Grunewald, 1979; Kebbon, 1987; Garber, 1988; Grunewald, 1997; Dept. of Social Affairs, 2001). In Sweden, a smaller proportion of people with milder intellectual disabilities is administratively defined, i.e. people who receive special support because of their disability (Sonnander, 1987; Sonnander & Emanuelsson, 1990; Sonnander et al., 1993). During their infant years, people with intellectual disabilities are identified administratively only to a limited extent, primarily because the need for services is not very great at this time in their life. Based on concurring results from several countries, younger age groups, especially in the school years, are over-represented among administratively identified intellectually disabled people. The proportion is lowest before 6–7 years of age, highest around 15 years of age and then declines during the adult years. This pattern is especially true of people with mild intellectual disability, where the school’s demand for intellectual ability creates a situation in which individuals with such a disability have greater difficulty in asserting themselves. These individuals are therefore identified to a greater extent as people with intellectual disabilities with an extensive need for help and care. On the other hand, the majority of adults judged to have poor cognitive ability after their school years are not identified as intellectually disabled and are therefore not subject to receiving special services, but are able to earn a living and manage on their own. In the oldest age groups a somewhat higher death © The authors and Studentlitteratur

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rate occurs in those people with severe intellectual disabilities, a pattern found in other countries as well. Because it is the administrative criterion that is typically used to group people with intellectual disabilities, group size, first determined psychometrically and socially, will depend on how the prevailing help system defines those individuals eligible for services.

A constructionist perspective From a constructionist perspective, which is particularly suitable in sociology and social psychology, intellectual disability has its basis in social constructions rather than objective phenomena. We understand intellectual disability in the same way that we understand and interpret reality in general. An interpretation is valid only as long as people agree to it, i.e. as long as the interpretation has a generally accepted explanatory value and fits within the current social system or setting. Different social phenomena are not absolute, but are continuously constructed and reconstructed by people in their attempt to grasp some understanding of reality (Berger & Luckman, 1966). Reality is therefore largely a matter of consensus. From this reasoning, it follows that the phenomenon that we choose to call intellectual disability is valid only insofar as we have chosen to categorise individuals in terms of a psychometric value (the results of intelligence testing), including scales that are intended to measure social ability. Even measuring instruments and their values, which we choose to represent behaviour or performance as deviating from the norm, are socially constructed.

Pupils with poor cognitive ability in regular school The proportion of people in the Swedish population that are administratively defined as intellectually disabled is low from an international perspective (barely 0.5%). If people are distinguished based solely on psychometric criteria, about 2% of the Swedish pop198



ulation are classified as intellectually disabled, assuming that a large representative group of people is tested with a well-proven assessment tool. Access to test results and school tasks from a large number of representative samples of Swedish school children has made it possible to identify groups of children in regular Swedish schools who fulfil the psychometric criterion of intellectual disability (IQ < 70), but who do not receive their education in a special school, a school form that is especially intended for children and adolescents with intellectual disabilities (Sonnander et al., 1993). In a representative sample of children born in 1967, 116 pupils fulfilled the test criterion of intellectual disability. These 116 pupils accounted for 1.45% of all pupils tested. In the same age group, 0.74% of the pupils were receiving education in special schools. Together, these values (1.45 and 0.74%) yielded the expected proportion of about 2%. They were not identified by school staff members or teachers as meeting the psychometric criterion of intellectual disability or otherwise recognised as intellectually disabled. However, the pupils did experience obvious learning difficulties and were, at least in a psychometric sense, on an equal level with some of the pupils in the special school. Very little is known about how this group performs and experiences school, or the kinds and amount of support they currently receive. It was observed that the 116 identified pupils had obvious difficulties in school and their school performance was described as generally poor. These pupils, however, were not the only pupils judged as poor school achievers, nor were they among those with the poorest achievements. Their school difficulties were shared with many other pupils who scored average test results. It was noteworthy that only two thirds of the sample in the study on psychometrically identified pupils received remedial education offered by the regular school. With regard to intellectual or social ability, it is not possible to draw a sharp distinction between those children and adolescents with an intellectual disability who should attend regular schools and those who should attend and receive education in special schools. A number of factors, additional to intellectual and social skills, contribute to which form of education (regular vs. special) the individual pupil eventually receives. Such factors as school administration and resource availability in the regular schools, as © The authors and Studentlitteratur

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well as teacher motivation, all have an impact on which school form is chosen. Another important factor is the parents’ desires, values and commitment (Sonnander, 1995; Persson, 1995). The group identified in the study is unique, in a research context, because this group was not identified in school as being intellectually weak. Moreover, the group was not made up of integrated children with intellectual disabilities in the classrooms, but were “normal” pupils among the other pupils in the classrooms. The results of the study serve as an excellent example of how the demarcation of individuals with intellectual disabilities is highly dependent on “social” circumstances.

Discussion Human development and behaviour are complex and driven by a complex mix of factors. It is well known that genetic conditions affect biological development and the behaviour repertoire of people as a species as well as the individual person. Injuries of different kinds, however, can hinder as well as dramatically change the course of individual development. Development always occurs as an interaction between biological conditions and the environment, which can be either supportive or unsupportive. The biological variation is highly comprehensive between individuals who have a development that proceeds in a normal course in the sense that the development is typical or common for this group. The same holds true for a group of individuals whose development is seen as deviating from the norm, where the so-called “within-group” variation is large. Because in the majority of societies a general form of psychometric assessment of the people is not normally applied, only individuals in whom poor cognitive ability is suspect become the target of intelligence testing. The majority of people who fulfil the psychometric criterion will neither be observed nor tested. It is quite clear that it is the conditions established by our society (e.g. the need to establish boundaries and a demand for adjustment and performance) and organisational structures (in the form of existing help systems), rather than an individual’s cognitive ability or intelligence, that ultimately define groups of people with intellectual dis200



abilities. This is particularly true of individuals with milder forms of disability. Changes in organisational structures and service systems can result in a group of people with intellectual disabilities ceasing, from an administrative standpoint, to be a group, or else the group will be less clearly demarcated than it was before such changes were introduced. It is not that people with poor cognitive ability disappear because the administrative aspect no longer exists, but that through social reform people move from one organisational model of services to another, or support is simply discontinued. However, how a society constructs its help system does have serious consequences for those people in need of such services. It affects how these people’s needs are met and evaluated, which services they will, in fact, receive, who will receive the services and under whose terms this process will or will not occur. Individuals and groups are differentiated and treated differently according to social/civil aims and needs. This differentiation occurs according to criteria accepted by the social system. When it comes to people with intellectual disabilities, these are of a psychological and social nature. The services offered to those (but not all) who fulfil the criteria are a consequence of how society defines eligibility and organises its help services. Help services targeted at groups in society with special needs for help and support act as powerful forces in the environment or the social context that, in addition to the help offered, also contribute to the creation of special groups.

Acknowledgements This work has been supported by the Social Science Research Council (project 95-0902:2C) and is based on previously published texts. The translation was provided by Leslie Shaps.

References American Association on Mental Retardation (2002). Mental retardation: definition, classification and systems of supports (10th edition). Washington, DC: American Association on Mental Retardation. © The authors and Studentlitteratur

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American Psychiatric Association (1994). Diagnostic and statistical manual of mental disorders (4th edition). Washington, DC: American Psychiatric Association. Berger, P. & Luckman, T. (1966). The social construction of reality. A treatise in the sociology of knowledge. London: Penguin Press. Doll, E.A. (1953, 1965). The measurement of social competence: a manual for the Vineland Social Maturity Scale. Minneapolis: Minnesota Educational Test Bureau. Garber, H.L. (1988). The Milwaukee Project: preventing intellectual disability in children at risk. Washington, DC: American Association on Mental Retardation. Granat, S. & Granat, K. (1973). Below average intelligence and intellectual disability. American Journal on Mental Deficiency 78: 27–31. Granat, K. & Granat, S. (1975). The generalisability of patterns of intellectual performance from institutionalized to non labelled intellectually subaverage adults. Journal of Mental Deficiency Research 19: 43–54. Grunewald, K. (1979). Intellectually disabled children and young people in Sweden. Acta Paediatrica Scandinavica, Suppl. 275. Grunewald, K. (1997). Effect of social and educational policies on the number of persons with mild mental retardation in Sweden. Mental Retardation 35: 218–220 Heber, R. (1961). Modification in the manual on terminology and classification in mental retardation. American Journal of Mental Deficiency 65: 499–501. Kebbon, L. (1987). Relation between criteria: Case-finding method and prevalence. Uppsala Journal of Medical Science, Suppl. 44: 19– 23. Magne, O. & Wahlberg, M. (1955). Vinelandmetoden [The Vineland Social Maturity Scale]. Stockholm: Psykologiförlaget AB. Nihira, K., Foster, R., Shelhaas, M. & Leland, H. (1974). Adaptive behavior scales. Washington, DC: American Association on Mental Deficiency. Persson, B. (1995). Specialpedagogiskt arbete i grundskolan. En studie av förutsättningar, genomförande och verksamhetsinriktning [Special education in regular school: a study of conditions, implementation and content]. (Report no. 4). Gothenburg: Department of Special Education, Gothenburg University.

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Richardson, S., Koller, H. & Katz, M. (1984). Career paths through intellectual disability services: an epidemiological perspective. Applied Research in Intellectual Disability 5: 53–67. Sonnander, K. (1987). Early identification of developmentally delayed children: reliability, validity and predictive value of a parental assessment instrument. Summaries of Uppsala dissertations from the Faculty of Social Sciences, 5. Acta Universitatis Upsaliensis, Uppsala university. Sonnander, K. (1995). Svagbegåvade elever i den vanliga skolan [Pupils with mild intellectual disability in the regular school]. Socialmedicinsk Tidskrift 6–7: 255–259. Sonnander, K. & Emanuelsson, I. (1990). Utvärdering genom uppföljning av elever VII: Svagbegåvade i vanlig skola. En uppföljning genom högstadiet och gymnasieskolan [Evaluation through follow-up of pupils, VII: pupils with mild intellectual disability in regular school: a follow-up through the senior level of the compulsory school and upper secondary school]. Uppsala: Department of Psychiatry, Ulleråker, Uppsala University, and Stockholm: Department of Education, Stockholm Institute of Education. Sonnander, K., Emanuelsson, I. & Kebbon, L. (1993). Pupils with mild intellectual disability in regular Swedish schools: prevalence, objective characteristics and subjective evaluations. American Journal on Intellectual Disability 97: 92–701. WHO – World Health Organisation (1980). International classification of impairments, disabilities and handicaps (ICIDH). Geneva: World Health Organisation. WHO – World Health Organisation (1992). The ICD-10. Mental and behavioral disorders. Clinical descriptions and diagnostic guidelines. Geneva: World Health Organisation. WHO – World Health Organisation (2001). International classification of functioning, disability and health (ICF). Geneva: World Health Organisation. Åkesson, H-O. (1961). Epidemiology and genetics of mental deficiency in a southern Swedish population. Uppsala: Almquist & Wiksell.


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13 Social exclusion and human diversity in face-to-face encounters

12 Social exclusion and human diversity in face-to-face encounters Borgunn Ytterhus

The intention in this chapter is to (1) illustrate that traditional definitions of disabilities are insufficient for the understanding of the social exclusion of intellectually disabled people at an individual level, and (2) show that social exclusion in face-to-face encounters is not a static category but a dynamic process which has collective moral, social and political implications. A single question from a nine-year-old girl with Down’s syndrome became the origin of my search for a better understanding of social exclusion on an individual level. Inspired by the philosopher Emmanuel Lèvinas and the sociologist Zygmunt Bauman, I will argue that their ideas about our fundamental differences as human beings forming the starting point for our claims on each other and our moral responsibility towards “the Other” might help us to understand how and why some types of human difference are interpreted as deviance while other human differences are interpreted as normality in face-to-face encounters.

A single question from a little girl – a great challenge for humanity I have carried out research on children and social exclusion for a number of years. The ultimate goal of most of this research has been to gain a better understanding of how, when and why social inclusion remains so difficult although we now have both legally and organisationally inclusive systems. Inclusion even proves difficult to implement in institutions where it has been an explicit goal © The authors and Studentlitteratur

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for years (Ytterhus, 2000, 2002, 2004). In these studies I have focused on children and youngsters with disabilities in general, and with intellectual disabilities in particular. Historically, people with intellectual disabilities have been socially marginalised and segregated in one way or another. However, over the last 20–30 years people with intellectual disabilities have been physically and legally integrated into Norwegian society. They now have access to public arenas and enjoy the same civil rights as other Norwegian citizens. At the same time, however, intellectually disabled people are commonly understood to be vulnerable according to our society’s rules and values, whether manifest or latent (NOU, 2001: 22). The existence of social segregation, marginalisation and exclusion can be seen as the social consequence of the latent rules, values and practice. My starting point here is social practice on an individual level, in face-to-face encounters. Nine-year-old Elin has Down’s syndrome. She experiences some degree of social segregation and exclusion both at school and in her neighbourhood. She is one of the children included in a research project in which I am following a group of children with disabilities through their childhood. My first contact with Elin, her family, teachers and peers took place in 1996/97 at nursery school when she was barely four years old. In 2002/2003 I followed her for a period at school, by which time she was nine years old. At school I observed that Elin received much of her education in a separate room with a special education teacher or an assistant, although she took part in all the social pedagogical activities and nearly always started the day with the rest of her class. At this time her mother told me about some changes in Elin’s social life. During the past year Elin had enjoyed less spontaneous contact with her peers and often chose to be alone. Her mother interpreted Elin’s choice as a coping strategy. It probably felt better to have chosen solitude rather than to have been marginalised by her peers. None of Elin’s classmates came to her house to ask her to play but they did turn up if Elin’s family invited them to birthday parties, Halloween and that sort of thing. Elin took part in ordinary organised social leisure activities outside school. She attended Scout rallies and went swimming; normal activities for children her age. Her mother told me that Elin had asked her if it was possible to have just some Down’s. Elin’s mother asked her what she meant and 206



Elin explained with practical examples from her everyday life. She used concrete examples of slow learners and socially clumsy children in her class. Her mother said in the interview: I recognised that she was talking about children in her class who I knew also had some kind of problem… And it is quite interesting that she mentioned these children and none of the others. She asked: But what about Peter – didn’t he have some Down’s? (Interview and translation by the author)

The mother’s story of Elin’s puzzlement is distinctive but not a typical story about children with intellectual disabilities. It is atypical in the sense that few children with intellectual disabilities in my project were able to verbalise much. The distinctive dimension lies in Elin’s verbalisation of her puzzlement. She has experienced social marginalisation and physical segregation, and has become aware of the connection between social practice and the fact that she has Down’s syndrome. Elin has also discovered that the Other defines our social status on the basis of our fundamental differences in behaviour in face-to-face encounters. It is the Other who defines the situation, according to Goffman’s (1963) interpretation of faceto-face encounters. At the same time, Elin has discovered similarities between herself and other children in her class with regard to everyday life at school. It is very difficult for nine-year-old girls with Down’s syndrome to understand why some slow learners and socially clumsy children are treated differently, while others are not. It is even more difficult for Elin to conclude that her Down’s is the reason for the cut-off – the practical limit – the acceptable reason for qualification as insider or outsider, not merely her behaviour and competence.1 From my point of view, Elin sees herself as different but not as deviant from her peers. She is marginal in the group, but so are others. Yet she is treated like a deviant, while the other marginalised children at school are not. And when the segregation takes place, no one protests. It is hard for her to understand why her differences qualify for physical segregation and ultimately deviance, while the other slow learners and socially clumsy children qualify for physical integration, and ultimately become insiders. Like most people 1

My data does not give any indication of Elin’s technical skills at school.


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in ambiguous situations, she becomes emotionally confused and tries to create meaning in these situations by redefining them. When social coexistence becomes threatened, she starts to categorise her peers according to a well-known category – Down’s syndrome. She takes the social consequences of Down’s syndrome as her point of departure to reduce the ambiguous emotions caused by situations. However, she is doubtful about her redefinition and so asks her mother if her reasoning is correct.

Who are the intellectually disabled? – demarcation, cut-off points and models of understanding Elin’s reasoning is incorrect: it is impossible to have “just some” Down’s syndrome. To be diagnosed with Down’s syndrome means that you were born with one extra chromosome, the so-called trisomy 21. Down’s syndrome brings with it a certain degree of reduced intellectual capacity. But her emotional approach to an ambiguous situation is quite ordinary. Her question reflects the hopes and fears of a little girl’s everyday life. I will try to redefine her question to shed new light on a very difficult dilemma: that of categorising a non-categorical state of being. Let me start with the definition of disability. Most people in Western countries have an intuitive understanding of what is meant by intellectual disabilities. We refer to intellectual disability in everyday life as if everyone knows what we are talking about. Tøssebro and Kittelsaa (2004) use examples to illustrate just how arbitrary the process can be of whether a person is categorised as intellectually disabled or not. In earlier times, intellectual disabilities were defined by intelligence quotient tests (IQ tests). This was not a satisfactory criterion and it was not easy to demarcate and set the right cut-off point. Tøssebro and Kittelsaa write: Since the 1930s, the cut off point in the Nordic countries has in practise varied between IQ 50 and IQ 85 (above IQ 70–75 was usually called ‘borderline’). In the first case, less than 0.5 per cent of the population would be called intellectually disabled, whereas in the second

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case more than 15 per cent will, if screened, be subjected to this label. (Tøssebro & Kittelsaa, 2004, p. 24)

The cut-off point seems to be pretty arbitrary, but the consequences are not. The cut-off point has an impact on access to welfare services, to research findings and acceptance of people’s participation in different social arenas. The example of Elin’s everyday experiences is a typical illustration of this challenge. Elin’s question accelerates the debate about the definition of intellectual disability in particular, and the definition of disability in general. The Norwegian sociologist Per Solvang (2002) writes that your impairment makes you different, but whether it makes you disabled or not depends on the situation, the stage you have reached in your life, the culture you live in, etc. He takes examples of very different kinds of impairment, on the one hand, deaf societies and, on the other, ampulovers2. These examples turn some of our dominant understandings of disability upside down and challenge our understanding of normality. Solvang’s (2002) book and Elin’s question share some similarities. Both illustrate the impossibility of defining a cut-off point for disability in everyday-life situations. This in turn begs the question of which professions should be responsible for the categorisation of disability. Nowadays both medical and the social scientists show an interest in taking responsibility for categorising human differences. We talk about medical models of disability and social models of disability (Oliver, 1990; Grue, 2004). The International Classification of Impairments, Disabilities and Handicaps (ICIDH) was drawn up by the World Health Organisation in 1980, and there are ongoing debates about these concepts in Western countries. Politically, the cut-off point is interesting because it defines who gets access to welfare services and financial support. It has practical consequences for people’s everyday lives. Theoretically, it is important because the definition directs the knowledge we create. Grue (2004) discusses four paradigms of disability: the bio-medical model, the socio-materialist

2

Ampulovers are people who develop a fascination for amputated bodies. He talks about devotees, pretenders and wannabes.


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model, the phenomenological model and the socio-cultural model (Grue, 2004, pp. 128–130). The bio-medical model and the phenomenological model focus on the individual level, but while the bio-medical model focuses on the treatment and adaptation of the individual, the phenomenological model focuses on coping, experience and identity. On the other hand, the socio-cultural and socio-materialist models focus on the societal level, the former on political and practical barriers, and the latter on different subcultures and values. The purpose of mentioning these models here is not to analyse them but to illustrate that all these models build on the same preconception: that disability is a sorting category. They all preserve the dichotomy between the disabled and the non-disabled, us and them. Elin experiences restrictions in her way of life at school, and these restrictions are apparently regarded as an acceptable way to treat individuals with Down’s syndrome. Instead of facing up to the challenge of social coexistence, the adults’ behaviour serves to legitimise social exclusion from the peer group. And exclusion becomes socially acceptable. Yet could there be other dimensions of humanity that are more relevant for understanding social differences than transforming them into deviance by restricting impaired people’s social behaviour and access to social arenas on an individual level?

Human diversity, mixed identities, emotions and existence Grue illustrates some of the challenges that impairments might create in face-to-face encounters with reference to the social activist and theorist Harlan Hahn (Grue, 2004, pp. 115–119). He talks of social diversity. Social diversity is defined as impairments that might involve visual diversity, physical limitations and/or behaviour that make it possible for us to segregate people with these kinds of impairments if we really want to. Visual diversity can trigger different kinds of social response (Goffman, 1963 (1975); Ytterhus, 2000; Hahn, quoted in Grue, 2004). Goffman writes about stigma, I myself about visual diversity as an extenuating circumstance, and Hahn about aesthetics and fear. But the common experience in this 210



literature is that visual diversity unleashes emotions which in one way or another influence the behaviour of the majority. I will take a closer look at Hahn in this context. Hahn discusses the sources of discrimination and reflects on the identifiable and visual elements of impairments, not only on functional limits. Most disabled people have to some degree either visual or behavioural features that make them identifiable. Grue (2004) draws parallels with discrimination against women and ethnic groups, and writes that one difference between these two groups and disabled people is that some disabled people find it difficult to accept the fact that they are identifiable. Solvang (2002) gives a very good example of this difficulty from his own life as a man with alopecia universalis or “silk skin” as he defines himself. Alopecia universalis is a state of complete hairlessness all over the body. He gives an account of a visit to a McDonald’s where some children were celebrating a friend’s birthday party. The visit to the hamburger restaurant was made at a time in his life when Solvang had stopped using a wig and begun to define himself as a member of the silk-skin people. He had described himself as comfortable with his diversity. Some of the children at the birthday party suddenly shouted out: “Look at that man, he has no hair!” He surprised himself by his automatic response: he turned around, looked at the children and gave them the finger! The children fell silent and their parents stared at Solvang (Solvang, 2002, pp. 103–104). Solvang’s own interpretation of his response is existential in character. Although he has defined himself as a silk skin, it is still hard for him to accept that the first thing other people notice when they meet him for the first time is his bald head. Even unknown children were liable to shout it out in public! And, as he writes, sometimes it is even worse; people often associate his baldness with tragedy and suffering. People assume he is suffering from cancer, a disease that is often associated with death. The fact is that he is identifiable as a completely hairless man. Hahn (in Grue, 2004, p. 116) explains the socially exclusive behaviour by the majority towards social differences in two ways. Firstly, he says it is a response to aesthetics. Secondly, it is a response to every individual’s own existential fears. Since it seems to vary through people’s lifetime whether the response results in exclusion or inclusion, we could develop Hahn’s argument and simply say that visual variety triggers both (1) an aesthetic response and (2) an © The authors and Studentlitteratur

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existential response. Such responses relate to our emotions and senses and to our existence as human beings. Something similar, and yet again something different, might happen to Elin’s life at school. She learns more slowly than the majority of children her age, and sometimes she can be a bit clumsier, but some of the other children also behave in a similar way. Because of her Down’s syndrome, she has physical differences which make her identifiable to others. At the same time, her medical diagnosis, Down’s syndrome, prompts provision of extra resources from the education system. As a result, the option of removing her from the other children in the name of diagnosis and professionalism becomes both legitimate and possible. The other classmates, who were slow learners, did not have any visually identifiable features and did not generate extra resources for pedagogical use, so it was seen as legitimate to place them within the majority group. If we take Hahn’s and Solvang’s explanations for granted, is it possible to overcome this discrimination against impaired people? I will draw attention to our dependence on the Other as human beings and on social coexistence as the foundation of a moral society by including a short introduction to the ethics and aesthetics of closeness.

From an individual moral code towards a phenomenology of responsibility and solidarity towards the Other The Lithuanian philosopher Emmanuel Lèvinas is usually categorised as an ethicist of closeness. Closeness ethics consists of theories focusing on the dyadic meeting between human beings. The face becomes the fundamental term in all social interaction, and exists incorporated in all social interaction between human beings. The face is what we cannot kill, or what at least gives us the information: you must not kill. From the face of the Other we derive the obligation of responsibility (Lèvinas, 1982 (1995)). “Responsibility is the first and major fundamental structure in subjectivity. Responsibility is defined as responsibility for the 212



Other: the Other who is not mine and the Other who does not concern me, but who I get in touch with and who I draw attention to as a face “(Lèvinas, 1995, p. 91, my translation). One of the main points in Lèvinas’ writing is that intersubjectivity is a non-symmetric relation. I become responsible for the Other, but it is up to the Other whether she/he decides to be responsible for me. I am responsible in every face-to-face encounter with the Other but I have no right to claim anything in return. We are all responsible for everything but I have a special responsibility for the Other. Here, our moral responsibility is connected to, and arises from, the dyadic relationship between human beings. No norms or rules can release me from this responsibility for the Other. From this point of view, it becomes impossible to neglect the Other or objectify the Other if we are to be moral beings. The goal is not universal principles and norms, but a description of the morality we are determined by as human beings – the non-normative basis of our moral norms (Nyeng, 1999, p. 110). The Other is unique due to her/his differences. Because we are all different from each other, we are all irreplaceable. Lèvinas’ ethic is critical of the phrase that we are all the same. He claims just the opposite – that we are all different and it is this difference and our diversity that we have in common as human beings. We are charged with responsibility for the Other (Lèvinas, 1982 (1995); Myskja, 1996). Lèvinas focuses on face-to-face interaction, taking the me-you relationship as his theoretical starting point. He argues from a micro level, from a single situational level. This is quite different from most ethical theories which generally take ethical principles as their starting points; principles without any ontological being. According to the ethics of closeness, the social segregation of impaired people is immoral if it harms the individual in concrete situations. It requires empathy and human will to see the Other. The challenge within the ethics of closeness is its dependence on individuality. This makes for a particularly vulnerable form of social bonding. The moral claims are individualised and dependent on every individual’s ethical consciousness. History has shown us that this is a poor guarantee of an inclusive world. “…[E]thics is not a natural feature of the human behaviour. Therefore, its visions and criteria need to be formulated in such a way that it can regulate the relations between society and the indi© The authors and Studentlitteratur

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vidual” (Norkute, 2004, p. 2). The Polish sociologist Zygmunt Bauman (1991, 2000) has tried to transform the moral individual claim on the Other into a social phenomenon, the aesthetics of closeness, in postmodern society. According to Bauman, postmodern society is grounded in human coexistence. When truth becomes relative, social institutions are transformed and contingency is our destiny. Then emancipation can no longer be regarded as a quality by the object but as the relationship between the objects. Our coexistence as human beings then becomes the only condition that is stable, and contingency becomes part of coexistence. “As we are doomed to share space and time, let us make our coexistence bearable and somewhat less dangerous” (Bauman, 1991, pp. 235). Bauman tries to construct an alternative type of coexistence, and a constant responsibility for the Other is inherent in his representation of coexistence. According to Bauman, there are no universal ethical codes. The codes are always grounded in social life and social relations. The moral responsibility for the Other is a social experience in concrete relations and situations. Norkute (2004) says that Bauman juxtaposes the ethics of closeness with the aesthetics of closeness. And while the ethics of closeness refer to the Other as a moral subject, the aesthetics of closeness refer to the subject that gives rise to emotions, feelings and/or aesthetic experiences. The aesthetics of closeness is a dynamic phenomenon which makes the existence of the Other relativistic. And it is our behaviour towards relativity that is important, because morality does not fade away but is constructed into different manifestations. The challenge is to unite solidarity with the celebration of diversity and of our unique differences in all these manifestations.

To make the moral social and political – an attempt to overcome social exclusion At this point I will return to Elin’s question: is it possible to have “just some Down’s”? Elin’s starting point is the social consequences of the absolute differences between human beings. Like Lèvinas, she has recognised the fact that it is our unique differences that 214



make us similar and give us something in common. But her experience is also that her differences lead to segregation and deviance for her, but not for the others. She has observed her classmates’ differences, including her own. She also knows that her differences have a name; she has Down’s syndrome. To have Down’s syndrome is to have both visible and invisible differences. The visible differences are connected to the embodied differences, and the invisible differences are connected to her existential being (intelligence, emotions, behaviour). Her other classmates’ differences did not have any special name (at least not as far as she, her mother or I knew). Elin makes a social comparison between herself and the others, which is a common human response when we have to construct meaning and identity. She tries to put her observations into what are, for her, well-known categories. One such category is Down’s syndrome. It was confusing for her when the answer to her question was that the others did not have even a little Down’s. At the same time as Elin puts the others’ differences into the same category as she was probably used to experiencing herself, she also represents herself. She has something in common with them, and the us–them dichotomy becomes vague. Through the acknowledgement of the others’ differences, she moves her own identity closer to the majority. They have something in common. In her attempt to interpret the situation she tests her understanding by asking her mother a perfectly reasonable question. According to Lèvinas’ definition of difference, she suspends the ontological distinction between intellectually disabled and non-disabled children. She defines the others as uniquely different in more or less the same way as she herself is. The dichotomy of disabled versus non-disabled proves insufficient. She both categorises and suspends the categories. Our moral responsibilities arise in social encounters with the Other and the responsibility is social because our coexistence with, responsibility for and solidarity with the Other is the fundamental glue that binds together civilised societies. No politics, economics or technology can modify or release us from that responsibility, only strengthen it or make it weaker. It is easy to supersede this ethical demand in societies with high-speed, unstable relations and changing social institutions. Elin’s question about human differences in human relations and social practice at school illustrates the © The authors and Studentlitteratur

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intellectual limitations of this moral and social claim. The moral and social claim gives rise to emotions, feelings and, in this case, aesthetic experiences which result in social processes of physical and social exclusion. All social processes need to be guided, not left to the mercy of fate (Bauman, 2000). So it becomes a political and moral imperative to work towards creating societies that avoid discrimination on grounds of human differences and uniqueness. “Solidarity comes into its own when the language of estrangement, discrimination and humiliation falls out of use” (Bauman, 1991, pp. 236). Elin’s question shows that social practice is discriminatory, and this practice seems to be legitimised by the dichotomy of her versus us in the medical model of disabilities, and strengthened by her visual differences which make her identifiable to both teachers and peers. If we are able to see our contingency within human inequality as a continual responsibility for the Other, discriminatory practices are rendered immoral. But the injustices in immoral practice are not characteristic of the individual but a consequence of the structural circumstances. As an individual, Elin cannot control what her life is guided by, unless her claim becomes a collective moral and political one. If the idea of a good society is to make sense in our postmodern world, it must involve giving all human beings a real chance to participate in all existing public arenas as other citizens do. This means a society where all existing barriers which might obstruct anybody’s chances must be removed (Bauman, 2000: 118).

References Bauman, Z. (1991). Modernity and ambivalence. Cambridge: Polity Press. Bauman, Z. (2000). Savnet fellesskap [Missing community]. Oslo: Cappelen Akademiske Forlag. Goffman, E. (1963 (1975)). Stigma – om afvigerens sociale identitet [Stigma – on the social identity of the Other]. Copenhagen: Gyldendals samfundsbibliotek. Grue, L. (2004). Funksjonshemmet er bare et ord [Disability is merely a concept]. Oslo: Abstrakt forlag. 216



Lèvinas, I. (1995). Etikk og uendelighed [Ethics and eternity]. Copenhagen: Hans Reitzels Forlag A/S. Myskja, B. (1996). Kant og Levinas om menneskets uerstattelighet [Kant and Lèvinas on the irreplaceability of human beings]. Norsk Filosofisk Tidskrift 31. Norkute, M. (2004). Ethics, morality and social bond in the work of Zygmunt Bauman. Sociumas – internet magazine 7: 1–8. http://www.sociumas.lt/Eng/Nr 7/bauman.asp NOU (Norges Offentlige Utredninger) (2001). Fra bruker til borger – en strategi for nedbygging av funksjonshemmende barrierer [From user to citizen – a strategy for dismantling disabling barriers]. Oslo: Statens Forvaltningstjeneste. Nyeng, F. (1999). Etiske teorier – en systematisk fremstilling av syv etiske teoriretninger [Ethical theories – a systematic representation of seven ethical theories]. Bergen, Fagbokforlaget. Oliver, M. (1990). The politics of disablement. New York: St. Martin’s Press. Solvang, P. (2002). Annerledeshet – uten variasjon, ingen sivilisasjon [Diversity – no civilisation without variation]. Oslo: Aschehoug. Tøssebro, J. & Kittelsaa, A. (Eds) (2004). Exploring the living conditions of disabled people. Lund: Studentlitteratur. World Health Organisation (WHO) (1980). International classification of impairments, disabilities and handicaps (ICIDH). Geneva: World Health Organisation. Ytterhus, B. (2000). De minste vil, og får det kanskje til [Everyday-life segregation in nursery schools]. PhD dissertation. Trondheim: the Norwegian University of Science and Technology, Department of Sociology and Political Science. Ytterhus, B. (2002). Sosialt samvær mellom barn – inklusjon og eksklusjon i barnehagen. [Children’s social relations – inclusion and exclusion in nursery schools]. Oslo: Abstrakt Forlag. Ytterhus, B. (2004). Sosialt samvær i barnehager og skoler [Social relations in nursery schools and schools]. In: Tøssebro, J. (Ed.). Integrering och inkludering [Integration and inclusion]. Lund: Studentlitteratur.


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13 A relational perspective on disability: an illustration from the school system

13 A relational perspective on disability: an illustration from the school system Magnus Tideman

Introduction The school staff said that Leif was slow and had difficulties. They advised us to register him in the special school (compulsory school for pupils with intellectual disabilities), which we now regret. But there was no alternative, there were so many other children who needed help. Otherwise he would not have received any help, it was like that, either special school or no help at all. (Tideman, 2000) Leif’s mother says this as she looks back on the process that led to her son’s becoming a special school pupil1 (Tideman, 2000). Leif started regular school like other children, but after a few years he could no longer be offered the help he needed in school due to a lack of resources. The school then took the initiative of entering Leif in the special school system. In practice, this meant that he would remain in his regular school class, but now with support paid for by the special school. Since there was no other means of getting the help that everyone agreed Leif needed, his parents consented, albeit reluctantly, to enter him in the special school.

1

In Sweden, the compulsory school for pupils with intellectual disabilities, in this text referred to as the “special school”, is a separate school administration intended for pupils who, due to intellectual disability and/or autism, are judged unable to meet the regular school targets. Some 1.6% of the total number of pupils today are registered in the special school. The special school is part of the state school system and shares a common curriculum, but with separate courses. Most special school pupils are in separate classes, but the proportion of pupils who are “individually integrated”, i.e. registered in the special school but participating mainly in the regular school education, has increased significantly during the past decades.


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In Sweden, all children aged between 7 and 16 are required by law to attend school. There are two main school systems, the regular school and the special school. The vast majority of pupils attend regular school, while the special school is intended for the very limited group of pupils who, due to intellectual disabilities, are considered unable to meet the regular school targets. After a long period (1968–1990) during which the proportion of pupils in special school remained stable (approx. 0.6% of the total number of pupils), the number of special school pupils increased by 79% from the academic year 1992/93 to the academic year 2002/03 (Skolverket, 2004). A considerable proportion of these pupils are, like Leif, children who are thought to be receiving inadequate support from their regular school and have therefore become candidates for registration in special school. They are formally registered in the special school system but in practice they are not moved to special school classes but remain in their regular school, as so-called “individually integrated” pupils. This development, with an increased number of pupils in special school, raises many questions about cause and effect at different levels and for different parties. In this article I will use the increase in the number of special school pupils as an illustration of the continuing debate about how disability should be defined.

Views change over time Attitudes to children and adults who deviate from the norm and ideas about how they should be treated have changed in line with developments and changes in society (Börjesson, 1997). The general view of people with considerably reduced intellectual capacity, or intellectual disability, has fluctuated between optimism and pessimism. Since the first Swedish schools and institutions for people with intellectual disabilities were established in the 19th century, there have been periods when the potential and capacity of the intellectually disabled and their right to support have been emphasised, and other periods when their incapacity, moral failings and danger to society have been stressed (Helldin, 1997). The work carried out by so-called philanthropists towards the end 220



of the 19th century, based on an optimistic development approach, was replaced in the first half of the 20th century by institutional detention of the “feeble-minded” (sinnesslö, an earlier term for the intellectually disabled) in order to protect society from the perceived risk they presented. Institutional incarceration and enforced sterilisation, mainly during the 1930s to 1950s, were primarily motivated by the perceived need to protect society from the disabled and their undesirable characteristics and genes. The belief in institutionalisation survived even after most racial biology-based opinions had disappeared. For example, up until the 1960s parents were recommended to leave their intellectually disabled children to the experts at the state-run care homes. During the 1960s, however, attention was increasingly paid to the negative effects of institutional living. The forms and content of the care provided by the institutions were questioned, and there was an increased awareness that the expansion of the welfare state had not benefited all groups. There had been a significant increase in prosperity for the population at large, but although to some extent this prosperity eventually benefited people with different types of disability, the gap in the standard of living between the disabled and the rest of society remained considerable. During the 1960s and 70s, a new, comprehensive objective for disabled policies was drafted, based on these insights. The two most important ideological goals in the field of disability were normalisation and integration. Political decisions and actions were to improve living conditions for disabled people, to bring them into line with those of other people. People with intellectual and other disabilities were to have a greater share in the prosperity that had been created, and this was to take place within the framework of normal society (Nirje, 2003). The institutions were gradually closed down and so-called open care and other support systems were established. It was no longer deemed necessary for intellectually disabled children to live in institutions; instead they were to grow up with their parents. All intellectually disabled children, including those with grave disabilities, were now required by law to attend school and were to go to the same schools as other children. Efforts to normalise and integrate life as far as possible for the intellectually disabled have been the hallmark of development in the Nordic countries over the past few decades (Sandvin, 1992, 1996; Tøssebro, Gustavsson & Dyrendahl, 1996). © The authors and Studentlitteratur

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The physical integration of the special school pupils gathered momentum significantly for reasons that were both ideological and financial (Söder, 1984). Towards the end of the 1970s and the beginning of the 1980s, evaluations and studies were published that showed it was not easy to realise the ideals of normalisation and integration. The dominant image of integration was that special school and regular school classes took place side by side in the same school buildings, but that contact between the two was sporadic or almost entirely absent. The question of who should be responsible for implementation became an important factor in discussions about the obstacles to realising ambitions for social integration. In Sweden, the act of making special schools primarily the responsibility of local government was regarded as a vital step in the progress towards increased normalisation and integration (SOU, 1991:30). The transfer of education, support and services for intellectually disabled people to local governments during the 1990s was carried out with these motives in mind.

The special school expands A few years after the responsibility for special schools had been transferred to local government, a significant increase was noticed in the number of pupils entering special school (Tideman, 2000; Blom, 1999). Over a ten-year period, the number of pupils in special school increased by 79% in Sweden (Skolverket, 2004), though there were large regional variations. Several different factors are assumed to have contributed to this expansion of the special school. Among other things, the increase coincided with changes in the regular school system, involving a new emphasis on increased theoretical knowledge, a new grading system and greater local freedom to decide the curriculum and direction of the school. During the past 15 years, the Swedish school system has developed from a highly centralised, detail-driven system to one of the least regulated education systems in the Western world (Daun, 1997). Rather than issuing detailed rules for the running of schools from a centralised level, the state now governs via centrally formulated goals (Söder & Kebbon, 1990). For example, the legislation in cen222



tral areas has assumed more of a framework character. This legislation is characterised by ambitious goal formulations without obligating rules. This has meant, for example, that local freedom to shape the school syllabus has increased considerably, which has contributed in turn to increased variation in several areas, such as pedagogical practice and the view and organisation of special education and special schools (Tideman et al., 2004). One of the crucial factors behind the increase in the number of special school pupils is thought to have been the considerable cuts in funding to which the regular school system has been subjected. These cuts have led, among other things, to a reduction in the extent to which pupils with intellectual difficulties receive adequate help, due to a lack of resources. For some pupils, registration in special school has become the only alternative if they are to receive adequate support (Tideman, 2000; Skolverket, 1999; Blom, 1999; SOU, 2003:35).

Different understandings of disability The increasing number of pupils in special school means that more children than before are being categorised as special school pupils. This categorisation and its consequences for the individual can be analysed and discussed in depth, but in this context I would briefly like to point out that this categorisation has several implications (both positive and negative) for the individual. The categorisation (often associated with a medical or psychological diagnosis) can sometimes offer a causal explanation of the child’s difficulties, which in turn can ease feelings of guilt and shame on the part of both the children and their parents for. In an organisation with limited resources, the categorisation also functions as a key to special resources. Other possible implications are that the categorisation may affect identity development and sense of self. Some effects of the categorisation are short term while others are more long term (for a more extensive discussion about the implications of categorisation, see, for example, Solvang, 1999). The majority of children who entered special school over the past ten years had started regular school without being categorised as © The authors and Studentlitteratur

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disabled. Through registration in special school, however, they became part of the special school sphere and are therefore now statistically included in the category “disabled”.

Characteristic, oppression or relation? There are a number of different ways of looking at the nature of disability and its causes. Using Johnstone (1998) as a starting point, we can identify four models of disability: 1 2 3 4

The medical model The rehabilitation model The social model The rights-based model

The first two models take the individual as the point of departure and compare the individual with the norm. Individuals who, due to insufficient opportunities or abilities, are unable to achieve what is considered to be normal for their age, for example intellectual or physical achievements, are regarded as disabled. The medical model focuses on the individual’s physical and biological shortcomings, and the supports and services that can compensate for these individual flaws. When people are different, their difference is regarded as an illness which requires diagnosis and treatment. From a medical perspective, disability is primarily an individual condition. The rehabilitation model, like the medical model, takes the individual’s difficulties in coping with normal life as its starting point. This model, which comprises more disciplines within health care than the purely medical model, aims to train the functions of the individual in a normalising direction so that disabled individuals are able to function as normally as possible. The social model shifts the perspective from the individual to society. In this model it is society that excludes people with difficulties or disabilities through oppression (Barnes & Mercer, 1999). The starting point is that there are always individuals with different opportunities and abilities in society, some with more extensive disabilities. This is seen as a natural variation in a population. It is soci224



ety’s physical environment and attitudes that create barriers, so that disabled people do not have the opportunity to participate in society on the same terms as others. From this perspective, disability is not an individual phenomenon but something construed by society. The approach of the rights-based model to disability is, like the social model, placed on a political and public level. The starting point of the rights-based model is that all people have the right to self-determination, but that disabled people are denied this through structural discrimination. Social, psychological and financial conditions give some people in society an unfair advantage in terms of opportunities to determine their lives and futures compared to, for example, the disabled. The rights-based model advocates anti-discrimination legislation as the most important tool for allowing everyone to determine their own lives. For example, it should be made illegal to exclude people from jobs or from private or public buildings because of their disabilities. This model is closely connected to women’s struggle for equality, as well as the fight against discrimination by black people, homosexuals and other minorities.

Shortcomings of the school or the individual? Priestley (1998) describes a classification of attitudes to disability similar to the models for disability outlined above, which can be used to understand the increased registration of pupils in special school. If disability is regarded as an individual problem, the focus is on the shortcomings of the individual (even if environmental factors are given a degree of importance). Disability seen from a social point of view means that society and its institutions are regarded as the environment which, due to insufficient resources and treatment, creates barriers and obstacles and thus disability (it is not denied that individuals have different abilities, but this is not the focus). These two alternative views on how disability is construed allow us to understand the reasons for the increase in registration of pupils in special school in two ways: © The authors and Studentlitteratur

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1 Using the individual approach, the segregation of those pupils unable to cope with the regular school education can be seen as natural. Registration in special school becomes an expression of an individual child’s failure to meet regular school targets and a natural effect of insufficient individual capacity and ability. 2 With a social approach, some pupils become excluded when the school lacks resources and/or the expertise to help each individual pupil as needed. Registration in special school becomes an expression of the school system’s insufficient resources and inadequate ability to give all pupils in need of support the help they require and are entitled to. The two approaches, here somewhat simplistically divided for the sake of clarity, emphasise different explanatory factors. Disability seen from the individual perspective is an expression of human shortcomings or inability. These individual flaws both can and must be diagnosed. With the objective diagnosis as a basis, the correct pedagogic treatment can be given. From the social perspective, however, a disability is chiefly an indication that the school organisation does not have the means to meet the needs of individual children, focusing instead primarily on the education of the “average” pupil. The individual pupil must fit into this system or risk being seen as disabled. When the system is not adapted to the needs of individual pupils, disability is created, which is a consequence of the failures of the system rather than of the individual. From this perspective, diagnoses point the finger at individuals, allowing society to absolve itself of blame by placing the problems on the individual level. From the individual approach, it follows that special efforts or organisations, such as the special school system, are a rational way of handling those pupils who have been diagnosed as disabled. The pupils are best helped through special pedagogy, special teachers, and having their own premises and opportunities to meet likeminded people. The opposite view is that special school exists mainly to relieve the regular school organisation. By identifying children who do not meet the demands and expectations of the school and segregating them, placing them “outside”, for example in special school, the system can continue without changing and thus maintain its legitimacy. As long as there are parallel forms of 226



schooling, regular school and special school, the segregation of pupils will continue. In order to achieve a more inclusive system, radical and fundamental changes are needed.

Disability as a relational concept The relational disability concept (Söder, 1982) can be regarded as another disability model, a sort of synthesis of the models described above. The relational approach positions itself between the individual and society-based views of disability. The approach signifies an affirmation both of the fact that people can have individual disabilities and that society can in various ways obstruct, oppress and discriminate against people. Disability is seen as a relational phenomenon, where disability can occur at the meeting point between the individual and the environment. This means that the surrounding environment, not merely in its physical aspect but also in the shape of social relations and meetings, decides whether a person in a certain situation becomes disabled or not. The same person with an impairment can become disabled when encountering a nonadapted environment/situation, while in another environment/situation no disability occurs. Disability is thus shifted from referring only to the individual or to the “qualities” of society, to referring to the relations between the individual and society. Both the individual and the social level are needed in order to understand disability and how it is construed. The other models place the emphasis of what should be done in order to avoid disability on correcting the shortcomings either of the individual or of society. Depending on the focus, the efforts have different aims, either to normalise the individuals or to make society more accessible for disabled people. According to the relational approach, both individual and general efforts are important in order to minimise disability-inducing situations. Using the relational approach to disability, the increase in special school registration can be seen as the result of an encounter between individual shortcomings and the school’s failings. When the environment, in the shape of the school’s resources and approach, is not adapted to the needs of all students, the school becomes an environment that creates disability in some pupils. Dis© The authors and Studentlitteratur

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ability becomes a question of the relationship between individual factors, such as the pupil’s prospects and ability, and environmental factors. In addition to the potential of the individual pupil, factors such as the parents’ educational background also play a role. For example, the parents’ ability to look after the interests of their child and negotiate in order to gain access to support services is one factor. Other influencing factors include the local government’s financial commitment to the school, attitudes of the school management and teachers to children’s learning difficulties and how they should be dealt with, national demands for grading systems and theoretical knowledge, and so on. Disability can therefore be seen as a relational concept, where the relation between different factors can create disability. Since it is possible to influence this type of relation, it can be said that disability is primarily what society, through its actions, decides to call disability (cf. Bury, 1996).

The individualisation of social problems In critical situations, for example during crises in public finances, notions and norms are thrown into sharper focus. Attitudes to deviations and weaknesses are exposed that people would not generally want to be associated with (Ohlander, 1986). Interviews with the parents of some of the new special school pupils (Tideman, 2000) show that, for most of them, registration of their children in special school as individually integrated pupils became a relevant option during periods of poor public finances and was motivated by a wish for the pupils to gain access to resources. The process can be seen as an example of how the definition of special school pupils varies over time. Depending on what resources are available in regular school, smaller or larger numbers of pupils are defined as disabled. This is in line with what Edgerton (1993) suggests: “We know, of course, that the definition of light intellectual disability is arbitrary and has varied over time, depending on financial and political causes rather than scientific ones.” The lack of resources and its consequences for schools are not seen primarily as a social problem. Instead, attention is focused on individual, often medical-biological, problems. Politicians and officials find a solution by locating the causal problems in the individ228



ual pupil rather than looking for causes in more structured conditions such as government finances. Due to their shortcomings, pupils are judged unable to fit into the system and are therefore registered in special school. This manner of placing the problem on the individual level reveals that the fundamental medical view of disability is still strong in practice.

Generic efforts: special support The historical retrospective shows fluctuations over time in the approach to and ideology about the less gifted and the intellectually disabled. How can these changes be explained? What decides which approach and which ideology dominate? A historically decisive factor is the scope of public finances. Söder (1981) argues, for example, that the optimism and pessimism respectively of care ideology are largely decided by disabled people’s ability to earn their living and contribute to productivity, abilities that in turn depend on the demand for labour. In line with this, one could assume that the state of public finances affects what type of explanatory model and approach to disability dominates. An analysis of the increase in special school pupils in Sweden over the last decade shows that the boundaries of who is regarded as disabled have been stretched and that disability is a relational phenomenon. As Söder points out (1984), when it comes to disability, researchers of historical retrospectives often prefer to highlight the altruistic and ideological motives behind change and development rather than the structural and financial motives. The special school expansion can be seen as an illustration of how insufficient general measures in society lead to an increased demand for special individual support measures and more pupils than before being classified as disabled. The basis of a society where democracy and equality prevail is that all children should receive a good education with the support they require. Special support efforts can brand and separate, but at the same time it is obvious that avoidance of special efforts can contribute to individuals’ not receiving the support they need and therefore risk even greater segregation (Söder, 1989). The most important question for the future is not whether there is a © The authors and Studentlitteratur

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need for special support efforts for pupils with difficulties in school, but on what grounds and in what manner special support should be handled in the schools of today and tomorrow.

References Barnes, C. & Mercer, G. (1999). Granskning av den sociala modellen [Examination of the social model]. In: Tideman, M. (Ed.). Handikapp, synsätt, principer, perspektiv [Disability, approach, principles, perspectives]. Lund: Studentlitteratur. Blom, A. (1999). Särskilda elever [Special pupils]. FoU report 1999:28. Stockholm: Forsknings- och Utvecklingsenheten, Socialtjänstförvaltningen. Bury, M. (1996). Defining and researching disability: challenges and responses. In: Barnes, C. & Mercer, G. (Eds). Exploring the divide: illness and disability. Leeds: Disability Press. Börjesson, M. (1997). Om skolbarns olikheter. Diskurser kring “särskilda behov” i skolan – med historiska jämförelsepunkter [About differences in school children. Discourses on “special needs” in schools – with historical points of comparison). Stockholm: Skolverket. Daun, H. (1997). Omstrukturering av det svenska skolsystemet. Gensvar på globaliseringstendenser eller nationella krav? [Restructuring the Swedish school system. Responding to globalisation tendencies or national demands?]. Pedagogisk forskning i Sverige 2–3: 161–181. Edgerton, R. (1993). Mild mental retardation and the 1990s. In: Gustavsson, A. & Söder, M. (Eds). Normalization and then…? FoUreport 93:3. Stockholm: College of Health and Caring Sciences. Helldin, R. (1997). Specialpedagogisk kunskap som ett socialt problem. En historisk analys av avvikelse och segregation [Special pedagogic knowledge as a social problem. A historical analysis of deviation and segregation]. Stockholm: HLS Förlag. Johnstone, D. (1998). An introduction to disability studies. London, David Fulton Publishers. Nirje, B. (2003). Normaliseringsprincipen [The normalisation principle]. Lund: Studentlittteratur. 230



Ohlander, A-S. (1986). Kärlek, död och frihet; Historiska uppsatser om människovärde och livsvillkor i Sverige [Love, death and freedom; historical essays on human worth and living conditions in Sweden]. Stockholm: Norstedt. Priestley, M. (1998). Constructions and creations: idealism, materialism and disability theory. Disability and Society 13, 1: 75–94. Sandvin, J.T. (1992). Fra normalisering til sosial integrasjon [From normalisation to social integration]. In: Sandvin, J.T. (Ed.). Mot normalt? Omsorgsideologier i forandring [Care ideologies in a state of change]. Oslo: Kommuneforlaget. Sandvin, J.T. (1996). Velferdsstatens vendepunkt [The turning point of the welfare state]. Bodö: Nordlandsforskning. Skolverket (1999). Kvalitet i särskolan samt Skolverkets planerade insatser och prioritering [Quality in the compulsory school for pupils with intellectual disabilities and the planned work and prioritisation of the Swedish National Agency for Education]. Dnr 1996:565. Stockholm: Skolverket. Skolverket (2004). Descriptive data on childcare, schools and adult education in Sweden 2003. Stockholm: Skolverket. SOU (1991:30). Särskolan, en primärkommunal skola [The compulsory school for pupils with intellectual disabilities, a primary local government school]. Slutbetänkande av skolbarnomsorgskommittén. Stockholm: Allmänna förlaget. SOU (2003:35). För den jag är – om utbildning och utvecklingsstörning. Carlbeckkommittén delbetänkande [For who I am – about education and intellectual disability. Interim Report from the Carlbeck Committee]. Stockholm: Fritzes. Solvang, P. (1999). Medikalisering av problem in skolan [Medicalisation of problems in school]. Locus no. 2: 16–29. Söder, M. (1981). Vårdorganisation, vårdideologi och integrering: Sociologiska perspektiv på omsorger om utvecklingsstörda [Care organisation, care ideology and integration: sociological perspectives on the care of the intellectually disabled]. Stockholm: Almqvist & Wiksell International. Söder, M. (1982). Handikappbegreppet – en analys utifrån WHO:s terminologi och svensk debatt [The disability concept – an analysis using WHO terminology and Swedish debate]. Utredningsgruppen för handikappåret 1981. Stockholm: Socialdepartementet. © The authors and Studentlitteratur

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Söder, M. (1984). The mentally retarded: ideologies of care and surplus population. In: Barton, L. & Tomlinson, S. (Eds). Special education and social interests. London: Croom Helm. Söder, M. (1989). Disability as a social construct: the labelling approach revisited. European Journal of Special Needs Education 4, 2: 117–129. Söder, M. & Kebbon, L. (1990). Socialpolitisk bakgrund [Sociopolitical background]. In: Kebbon, L., Sonnander, K., Windahl, S-I., Ericsson, K., Tideman, M. & Åkerström, B. (Eds) (1992). KOM-UTprojektet. Utvärdering av kommunalisering av omsorger om utvecklingsstörda, bakgrund och metod [The KOM-UT project. An evaluation of the municipalisation of the care of the intellectually disabled, background and method]. Uppsala: Centrum för handikappforskning, Uppsala Universitet. Tideman, M. (2000). Normalisering och kategorisering [Normalisation and categorisation]. Lund: Studentlitteratur. Tideman, M., Rosenqvist, J., Lansheim, B., Ranagården, L. & Jacobsson, K. (2004). Den stora utmaningen – om att se olikhet som resurs i skolan [The big challenge – on seeing differences as a resource in schools]. Halmstad: Högskolan i Halmstad & Malmö Högskola. Tøssebro, J., Gustavsson, A. & Dyrendahl, G. (Eds) (1996). Intellectual disabilities in the Nordic welfare states. Policies and experiences. Kristiansand: Norwegian Academic Press.

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14 “Attitudes” as an observational artifact

14 “Attitudes” as an observational artifact Wendelin Reich and Dimitris Michailakis

Introduction The attitude concept is one of sociology’s most venerable theoretical tools. Despite ups and downs, it has been in continuous use at least since the 1920s. Almost as old as sociological research on attitudes are criticisms of the attitude concept. Recurrent objections are that attitudes are psychologically dubious, that they are methodologically wobbly, and that they almost necessarily lead to reductionist sociological explanations (see, for example, Elias & Scotson, 1965; Tilly, 1998). At the same time, a significant amount of applied social-scientific research continues to rely on the attitude concept and its close relatives, such as stereotypes, political/religious/cultural views, and prejudices. Whether or not the critics are right and attitudes are nothing but a scientific fiction, it is obvious that sociological explanations that reduce observable behaviour to attitudes apply an enormous psychological simplification. This raises several questions. In reducing individuals to attitude-bearers, what assumptions about the psychology of these individuals do socialscientific observations make? What theoretical conception of social populations (and society at large) is implied when structural properties of such populations are reduced to attitudes? What methodological advantages does it bring for social science to treat attitudes as something individuals actually “have”? These are the guiding questions of this contribution. We mentioned that the psychology of any grown-up, socialised human being is far too complex to be fully representable by the attitude concept. If some currents within social science observe individuals as bearers of attitudes, they make use of an enormous simplification. Alternative simplifications would be possible and have been employed – for instance, instead of observing individuals as bearers of attitudes, it is possible to observe them chiefly as bearers © The authors and Studentlitteratur

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of emotions or interests. In consequence, any social-scientific use of the attitude concept involves a moment of choice. It is in this sense that we may say that social science constructs individuals as bearers of attitudes. In our view, saying that science constructs its object of research does not mean that “anything goes”, that science is arbitrary. It only means that science has more than one possibility of describing its object and therefore needs to select. In Luhmann’s (2002) terminology, any description that involves selection is an observation and, as such, contingent. To answer how and why attitude observation takes place, we need to observe how social science observes – in other words, we need to carry out second-order observation (Luhmann, 1995b) and observe the observers of attitudes. Such observation is qualitatively different from first-order observation. While a first-order observation attempts to describe the world as such, a second-order observation attempts to describe a first-order observation. Second-order observation sees the first-order observation in the world observing the world. This grants the second-order observation a certain epistemological advantage over the first-order observation, as the first-order observation will not see (at least not without becoming a second-order observation) that it is based on a choice (hence contingent). In the next section, we will attempt an analysis of the observational “logic” that is built into applications of the attitude concept in empirical social research. Our analysis remains confined to research on attitudes toward other individuals or groups, thus ignoring research on attitudes toward social abstractions such as welfare, political programmes, etc. Then, we will try to uncover some of the reasons that have made attitude research quantitatively speaking a social-scientific success for over 80 years. There, our main thesis will be that the attitude concept fulfils certain functions that make it attractive and useful to empirical social research.

The logic of attitude observations The primary reference of the attitude concept is without doubt the individual. Attitudes are a certain type of mental state or disposition, and investigating them as a general phenomenon falls into 234



the disciplinary domains of psychology and social psychology. It is also in social psychology that attitudes had their most profound scientific impact. One of social psychology’s classics, Allport (1935), saw them as the discipline’s most important concept. Although attitudes can encompass a social relationship (e.g. “attitudes toward blind people”), having or not having them remains a property of the individual, not of any social relationship. Thus, even if the thematic focus of attitudes can lead us to differentiate between individual and social attitudes (Hakim, 2003), attitudes are always an individual-level construct. In social sciences such as sociology, political science or disability research, the ultimate goal of explanations employing the attitude concept is to account for the behaviour not of an individual, but of one or more populations. Nevertheless, such explanations tend to rely on the individual-centric definition of the attitude concept. For this reason, the following investigation of the logic of attitude observations is divided into two parts. We first try, to show that underlying the attitude concept, there is a certain conception of what psychological features matter to social-scientific explanations. Our thesis is that by reducing individuals to attitude-bearers, research commits itself to a host of momentous but largely implicit decisions regarding what features of the psychology of individuals it deems social-scientifically relevant. We then argue that usage of the attitude concept in social-scientific explanations also implies a certain theory of social populations (and even of society). Our thesis here is that such explanations observe populations as a flat aggregate of individual, attitude-caused actions.

Individuals as attitude-bearers When social-scientific research observes individuals in terms of their attitudes, it makes use of a psychological reduction that has, at least in principle, alternatives. Other reductions that play(ed) a certain role in past and contemporary research are interests, personality and rationality, to mention only three. To the extent that the mental organisation of actual human beings involves all these (and many other) organisational features, observing individuals in terms of attitudes only constitutes necessarily a reduction of complexity. © The authors and Studentlitteratur

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For this reason, it is meaningful to ask just what kind of psychological reduction the attitude concept is based on. According to the textbook definition of the term, “Attitude is a psychological tendency that is expressed by evaluating a particular entity with some degree of favor or disfavor”, where “evaluating refers to all classes of evaluative responding, whether overt or covert, cognitive, affective or behavioral” (Eagly & Chaiken, 1993, p. 1). Attitude research agrees that attitudes are not directly observable, but only observable if they manifest themselves in attitudeguided behaviour or in verbal descriptions of this behaviour provided by the subjects themselves. In comparison to alternative psychological reductions (such as the ones mentioned above), attitudes are characterised by a unique set of features that together can be said to define their logic. First of all, and rather trivially, attitudes refer to mental states rather than mental operations. An attitude is something one “has”, not something one “carries out” (such as, for example, a thought). Secondly, attitudes refer to mental states that are expected to be relatively durable. This is a prerequisite for their measurement in survey research. Less durable mental states, such as intentions, would hardly survive the delay between time of measurement and publication of research reports. Thirdly, attitudes are acquired rather than innate – at some point in time the individual has learnt his/ her attitudes. Fourthly, attitudes are tied to preferences. An attitude marks certain states of the world as preferable over certain other states. Fifthly, attitudes are causally relevant to behaviour, though normally not in a deterministic but in a statistical sense.1 This makes them relevant to social-scientific explanations of behaviour, as it suggests that observable behaviour can be explained in terms of underlying attitudes. Sixthly, attitudes are pre-reflexive mental states that predispose the individual to certain evaluative reactions; they are not a product of conscious deliberation (Eagly & Chaiken, 1993, p. 197). In a sense, the individual is victim to his/her own attitudes. However, as attitudes do not cause behaviour deterministically, the individual is capable of using conscious deliberation in order to overrule his/her own attitudes. This means that even an 1

Compare Merton (1976, p. 192): “Prejudicial attitudes need not coincide with discriminatory behavior.”

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individual whose behaviour is observed as caused by a certain attitude (e.g. someone with a “disablist” attitude) can be held responsible for the behaviour. In our view, these six features together define the logic of attitude observations (cf. Eagly & Chaiken, 1993). Whenever an observation of another individual refers to a mental state that is durable, acquired, tied to a preference, behaviourally relevant and pre-reflexive, we may say that an attitude is being observed. This is independent of the actual use of the word “attitude” and its close relatives, such as a stereotypes, political/religious/cultural views, and prejudices. For example, insofar as a survey question of the form “What do you think of X?” is targeted at the six elements, we may say that it is designed to observe an attitude. Our discussion shows that attitude observations commit the observer to a host of specific assumptions about the mental organisation of the observee. However, being mental states, attitudes are never directly observable from the outside, which means that their “observation” (i.e. reference) through scientific, political or media communication is never directly falsifiable. It also means that conspicuous absence of an attitude, an opinion or a prejudice (e.g. due to low inter-item reliability) can be observed in at least three different ways. Firstly, it can be observed as the presence of a “nonattitude” (Converse, 1964), which amounts to admitting that no attitude is present – the attitude concept simply does not apply. Secondly, it can also be observed as an “ambivalent attitude” (Ajzen, 2001, p. 39f), that is, the simultaneous presence of two conflicting attitudes. In this case, it is implicitly assumed that individuals always have attitudes, but that they sometimes find themselves in situations when they have too little context information in order to decide which of their attitudes is applicable. Finally, conspicuous absence of an attitude can be observed as ignorance, as the state of being temporarily unwilling or unable to access one’s true attitudes. This is the common but methodologically unreflected choice of empirical social research. Closed survey questions aimed at eliciting attitudes (e.g. “Do you endorse X?”) usually force respondents either to specify an attitude or to check items such as “Don’t know” or “Unsure”. In this way, the problem of the presence or absence of attitudes (“ambivalence” versus “nonattitude”) is conveniently rephrased as a problem of cognitive accessibility. © The authors and Studentlitteratur

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Attitudes and social populations As an explanatory tool, the attitude concept is commonly used both within and outside of science. For example, in social-scientific explanations, “disablist attitudes” are invoked in order to explain the exclusion of physically disabled individuals from the labour market (Aronsson & Smedler, 1985; Doyle, 2003; Lyth, 1973) or the problems facing intellectually disabled children in schools (Hill & Rabe, 1994; Nordström, 2002). In politics as well as the media, “disablist attitudes” are diagnosed in order to justify new policies, such as the Americans with Disabilities Act of 1990 or the Swedish Law Prohibiting Discrimination of Persons with Disabilities in the Labour Market of 1999 (SFS, 1999: 132). What all such applications of the attitude concept have in common is the idea that the problems a certain population or category of individuals faces are in part due to discriminating behaviour caused by the negative attitudes that some other population or category of individuals harbours against them. We suggest that such applications of the attitude concept involve not only a certain psychological reduction (see above), but also a sociological reduction. The starting point of this reduction is the social situation in which the discriminating behaviour is thought to take place (Söder, 1990, p. 233). In all nontrivial social situations, the outcome of the situation depends on selections made by several participants as well as a potentially complex set of situational conditions (Parsons, 1968). For instance, consider the social situation of schoolchildren playing during recess. It has been observed that intellectually disabled children often remain excluded from games played by non-disabled children (Nordström, 2002). Reducing this fact to attitudes non-disabled children have toward intellectually disabled children implies abstracting from (i.e. ignoring) a host of other factors: behaviour of the disabled children (who may or may not choose to play by themselves), cultural context (e.g. many children’s games are competitive, demand speed or require challenging forms of cooperation), structural preconditions (e.g. average length of the recess, which determines how much time the children have for getting to know each other), among other factors. By abstracting from all these other factors, the attitude-applying observation holds purported attitude-bearers accountable for the complex bundle of 238



social and psychological conditions and selections that contributed to the outcome of the social situation. The theoretical choices underlying this abstraction are worth detailing, as they imply a highly specific conception of social causation.2 In sociology, it is common to assume that population-level phenomena such as the afore-mentioned examples of social exclusion depend at least partially on population-level variables, such as the structure of the population, power relations and cultural context, among other things (Elias & Scotson, 1965). In effect, an explanation in terms of attitudes reduces the population-level phenomenon to a flat aggregation of an individual-level variable. This reduction may be called flat because it ignores the causal relevance of all relationships between individuals. The only remaining structural property is the distinction between a population of individuals who act (often understood as the “perpetrators”) and a population of individuals who are acted upon (the “victims”). However, the “perpetrators” act in isolation, unable to be stimulated by (or to stimulate) any other “perpetrators”. It can be seen that explanations in terms of attitudes involve an enormous sociological reduction. Although this reduction is tied to a very specific conception of social causation, it is by no means risky or fragile – in fact, it is not even falsifiable. Earlier we noted that any individual can be observed (unfalsifiably) in terms of the distinction attitude/ambivalence or attitude/ignorance. Observed by means of either distinction, everyone has an attitude, although he/she may sometimes be unsure about his/her actual preferences and thus be forced to respond to questions such as: “Are you for or against X?” by stating: “I don’t know”. For the explanation of population-level phenomena, this means that the behaviour of all individuals involved is guaranteed to be reducible to either of the two distinctions. It follows that the behaviour of these individuals is reducible to values of some specific attitude variable, such as: attitudes toward disabled individuals, toward foreigners, toward homosexual individuals, and so on. It is hard to imagine a more exhaustive form of explanatory reductionism. A social phenomenon such 2

We use the concept of social causation in order to make a methodological point, not because we endorse it. Being constructivists, we assume that causation is chiefly an observational schema (Luhmann, 1995a).


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as exclusion of disabled individuals from the labour market is explained in terms of a one-dimensional distribution of values, of the type (say): 84% of employers are generally willing, 6% are generally unwilling to employ disabled individuals, 10% are uncertain or refuse to answer. Despite the simplicity of this explanation, it still provides the illusion of saying something essential about the respective social population or society at large.

The scientific functions of attitude observations As we have tried to show in the preceding section, sociological explanations that are based on the attitude concept involve a specific reduction of a social phenomenon to an aggregated psychological phenomenon. It is worth noting that this procedure is not unique to attitude research. Rather, it mirrors a line of thinking that has been influential in Continental thinking at least since the days of Fichte and Hegel, that is: subjectivism. According to subjectivism, the world (including the social world) is essentially an emanation of subjectivity. Since Durkheim, subjectivism constitutes one of sociology’s most glamorous enemies – recent critics include Luhmann (1995b, p. 220) and Tilly (1998). However, if subjectivism (or mentalism) survives despite a never-ending line of qualified objections and refutations, we need to ask if there are other reasons that make it attractive to, even functional for social-scientific research to continue its usage of the attitude concept. In this section, we are going to distinguish four scientific functions that we believe are fulfilled by this concept: making society observable, creating explanations of universal reach, offering a well-defined place for methodological sophistication, and producing scientific results that are communicable to (and fundable by) society. A first function fulfilled by the attitude concept is that it helps social science to make society observable. For all sociological theorising, the complexity of society is a problem that can only be addressed by means of simplification. We mentioned above that sociological explanations applying attitudes reduce the observed social entity (be it society at large or a specific sub-population) to an 240



unstructured, “flat” aggregate of individuals. In this sense, such explanations observe society or specific populations as an extremely simple and “compact” (Fuchs, 1992, p. 90), yet highly tangible entity: an unstructured mass in which collective phenomena (from exclusion of disabled individuals to racism) are simple summations of individual dispositions. A second function is the capacity of attitudes to be built into explanations of universal reach. For one thing, since any social phenomenon presupposes by definition some kind of contribution from individuals, any such phenomenon can be observed as being “caused” by, hence reducible to, the behaviour of individuals (Luhmann, 1995a). In addition, we have already mentioned that an observer can reduce any individual behaviour to the individual’s attitudes. The probabilistic relationship between attitudes and action, although weakening the explanatory value of attitudes, contributes to strengthening their methodological applicability, as it implies that attitudes can be ascribed even in situations where observable behaviour does not cohere with them. Because this means that all behaviour can be observed as triggered by attitudes, these can give the illusion of making all behaviour comprehensible. It follows that there is no inbuilt limitation to the sociological applicability of the attitude concept. This characteristic is not shared by many other sociological and social-psychological concepts. For example, observations of individuals as utility maximisers may work in many contexts, but they routinely fail whenever individuals behave in ways that are observably incompatible with their ascribed “interests” (Simon, 1972). It is no coincidence that ascription of attitudes can be used to explain any behaviour, whereas ascription of utility maximisation cannot. Because utility maximisation is understood as rational or semi-rational, external criteria are available to decide ex post facto whether an individual really has maximised his/her utility. Attitudes, being pre-reflexive mental states, do not provide such criteria, thus allowing for essentially arbitrary ascriptions. A minimal limitation to arbitrariness is the fact that attitudes are supposed to be durable. As many survey-based studies have had to experience, attitudes often fail to cohere over different questions, different studies or different points in time (Söder, 1990). Rather ingeniously, the psychology of attitudes has responded to this challenge by © The authors and Studentlitteratur

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ascribing such problems to the presence of ambivalent attitudes (see Section 2.1). Observed in terms of the distinction attitude/ ambivalence, individuals cannot have no attitudes, but they can have several simultaneously applicable attitudes that prevent them from displaying fully coherent behaviour. In this way, attitudebased research can process all difficulties associated with the observation of attitudes as purely methodological problems (e.g. measurement issues, see Eagly & Chaiken, 1993, p. 152, footnote 13). A third function fulfilled by the attitude concept is to offer welldefined opportunities for developing – and demonstrating – methodological sophistication. Most basically, attitudes are assumed to be graded in strength, hence quantifiable, and equally quantifiable is their distribution over a population of individuals and their change over a period of time. By way of attitude research, it is therefore possible to produce data that are sufficiently rich in order to permit application of sophisticated statistical techniques, such as multivariate or time-series analysis. To attitude research, as well as its observers, it may therefore seem as if the elaborateness of its methodology is an indicator of the elaborateness and originality of its conceptual approach as well as its results. The final function of attitudes that we want to point out is their important role in producing scientific results that are communicable to, and fundable by, society (especially its political system). Understanding the flat, unstructured conception of populations that underlies attitude observations does not require a sociological education. Rather, this conception is already an integral part of public communication in all developed countries, where diagnoses such as: “Authorities have negative attitudes toward the disabled” routinely make it into the headlines (on this example, see SOU, 1999:21). When applied in research on social problems, attitudes also help in sustaining the social illusion that social problems can be solved by way of using a certain amount of public resources – after all, as attitudes are acquired rather than innate mental states, it should be possible to change them by way of (say) information campaigns. The public need never wonder who such campaigns are aimed at. Whoever holds negative attitudes against a disfavoured population can be observed as a potential threat to social order, hence as someone whose attitudes need to be changed. Members of disfavoured populations, on the other hand, need not worry that 242



they are observed as part of the problem, as attitude research tends to favour a clear distinction between perpetrators and victims. In sum, attitude research is highly compatible with society’s modes of self-observation. This creates a remarkable match between socialscientific and political observations of social problems – a match that provides politics with information and legitimacy for political action, and that provides social science with one of its most crucial environmental prerequisites: funding.

Conclusion In this contribution, we have tried to reconstruct the observational logic and the scientific functions of an important paradigm in empirical social science: attitude research. Our main source of inspiration was an article by Söder (1990), who criticises attitude research as applied to the relationship between disabled and nondisabled individuals. Söder argues that attitude research overlooks the fact that all social behaviour occurs in the context of specific social situations, and that this decontextualisation is the reason why different studies of attitudes toward disabled individuals often produce incompatible results. Even our own reconstruction can be observed as “critical”, although we have hitherto tried to avoid direct criticisms of the attitude paradigm. Being constructivists, we do not believe that social science has any form of direct access to social reality (which to us is not the same as saying that it has no access to social reality or that its access is arbitrary). Social science always has more than one option of observing social reality. If specific currents within social science prefer one option over all others, it may be hypothesised that they do so for reasons that are due to their internal scientific logic – in Luhmann’s (1995b) words, their “autopoiesis”. In this contribution we have tried to uncover several reasons behind the continuing scientific success of the attitude paradigm. Insofar as this paradigm fulfils certain functions (see above), we do not consider it meaningful to say that it is “wrong” or “inadequate”. Nevertheless, we cannot resist the temptation of issuing a small Popperian warning. According to the latest fashion in attitude research, attitudes are often not fixed but “ambivalent”. We men© The authors and Studentlitteratur

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tioned that this observation contributes to the universalisation of the attitude paradigm – whenever an observee fails to display behaviour that coheres with the attitudes that a researcher has attributed him/her, the researcher can assume that the observee simultaneously holds a second, conflicting attitude. In other words, the researcher can assume that the observee’s attitudes are ambivalent. However, even ambivalent attitudes are attitudes. In applying the distinction attitude/ambivalence, the researcher cannot observe individuals as anything other than attitude-driven beings. Whatever they do becomes automatically an expression of their (clear or ambivalent) attitudes. This means that the applicability of the attitude concept becomes unrestrained – attitudes can be used to observe everything, hence nothing. We would like to suggest that there is an alternative, more fruitful understanding of attitudinal ambivalence. In our reading of Söder (1990), ambivalence is not interpreted as an actual psychological feature but as a consequence of decontextualised observations. For instance, a research subject who states that he/she is always willing to help blind people cross the street may also state that he/she is generally unwilling to offer blind people a job. In both cases, the specific social context allows the subject to provide a clear (= nonambivalent) answer. However, a researcher who rates the subject in terms of the variable “Attitude toward blind people” may find that his attitude is ambivalent. As the example shows, attitudinal ambivalence of this kind is an observational artifact, rather than an actual psychological property.

References Ajzen, I. (2001). Nature and operation of attitudes. Annual Review of Psychology 52: 27–58. Allport, G.W. (1935). Attitudes. In: Murchison, C. (Ed.). Handbook of social psychology. Worchester, MA: Clark University Press, pp. 798–844. Aronsson, G. & Smedler, A.-C. (1985). Statliga arbetsledares attityder till handikappade [The attitudes of governmental supervisors

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toward blind people]. Stockholm University: Dept. of Psychology, p. 36. Converse, P.E. (1964). The nature of belief systems in mass publics. In: Apter, D.E. (Ed.). Ideology and discontent. New York: Free Press, pp. 206–261. Doyle, B.J. (2003). Disability discrimination: law and practice. Bristol: Jordans. Eagly, A.H. & Chaiken, S. (1993). The psychology of attitudes. Fort Worth, TX: Harcourt. Elias, N. & Scotson, J.L. (1965). The established and the outsiders: a sociological enquiry into community problems. London: Cass. Fuchs, P. (1992). Die Erreichbarkeit der Gesellschaft: zur Konstruktion und Imagination gesellschaftlicher Einheit [The accessibility of society: on the construction and imagination of societal unity]. Frankfurt am Main: Suhrkamp. Hakim, C. (2003). Public morality versus personal choice: the failure of social attitude surveys. British Journal of Sociology 54: 339– 345. Hill, A. & Rabe, T. (1994). Barns syn på barn: en studie av barns socialisation av attityder och värderingar av andra barn med särskild tonvikt på barn med funktionshinder [Children’s views of children: a study of the attitudinal and evaluative socialisation of children with respect to other children, with special focus on children with disabilities]. Gothenburg University: Dept. of Education. Luhmann, N. (1995a). Kausalität im Süden. [Causality in the south.] Soziale Systeme 1: 7–28. Luhmann, N. (1995b). Social systems. Stanford: Stanford University Press. Luhmann, N. (2002). Theories of distinction: redescribing the descriptions of modernity. Stanford: Stanford University Press. Lyth, M.D. (1973). Employer’s attitudes to the employment of the disabled. Occupational Psychology 47: 67–70. Merton, R.K. (1976). Discrimination and the American creed. In: Merton, R.K. (Ed.). Sociological ambivalence and other essays. New York: Free Press. Nordström, I. (2002). Samspel på jämlika och ojämlika villkor: om lindrigt utvecklingsstörda skolbarns relationer till kamrater [Interaction on equal and unequal terms: about schoolchildren with mild


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intellectual disabilities and their relationships to playmates]. Stockholm University: Dept. of Education. Parsons, T. (1968). Interaction: social interaction. In: Sills, D.L. (Ed.). International encyclopedia of social sciences Vol. 7. New York: Macmillan, pp. 429–441. SFS (1999: 132). Lag om förbud mot diskriminering i arbetslivet av personer med funktionshinder [Swedish Code of Statutes 1999:132: Law against the discrimination of people with disabilities in the labour market]. Simon, H.A. (1972). Theories of bounded rationality. In: Radner, R. & McGuire, C.B. (Eds.). Decision and organization, Amsterdam: North-Holland, pp. 161–176. SOU (1999:21). Lindqvists nia – nio vägar att utveckla bemötandet av personer med funktionshinder. Slutbetänkandet av Utredningen om bemötande av personer med funktionshinder [Reports by Government Commissions of Inquiry, SOU Series 1999:21: Lindqvist’s nine – nine ways for developing attitudes toward people with disabilities]. Stockholm: Norstedts. Söder, M. (1990). Prejudice or ambivalence? Attitudes toward persons with disabilities. Disability, Handicap and Society 5: 227–241. Tilly, C. (1998). Durable inequality. Berkeley/Los Angeles: University of California Press.

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15 Some themes within the realm of research on special education

IV

IV Participation and Inclusion


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15 Some themes within the realm of research on special education Jerry Rosenqvist

Introduction What constitutes special-education practice? What distinguishes special education from “regular” education? In other words: what is special and what is being done when special education is exercised? The questions are reasonable, but it is not so easy to provide clearcut answers to them. Nevertheless, some attempt will be made in this article to give plausible answers. My focus is on students in severe learning difficulties, formerly called students with mental retardation and today often referred to as students with intellectual disabilities. Although the term intellectual disability is used in other chapters of the book, I prefer to speak of students in learning difficulties, in order to emphasise a relational perspective (more about this below). Some references are made to the Swedish “särskolan”, formerly called “schools for the mentally retarded” in English and henceforward in this article referred to as the special school for the intellectually disabled. In recent years special education has been described as a pedagogical dilemma, both as a scientific discipline and in practice (see Haug, 1998; Skidmore, 1996, 1999, 2004). There are several reasons for this dilemma, which require serious examination. One reason is the difficulty of defining the meaning of the concept special education in a scientific way. The multitude of terms and expressions used throughout modern history to clarify what is meant, and how the meaning is comprehended, speaks for itself. Dissatisfaction with the most recent term has led to the search for another “mot juste”. In the English-speaking world, the road from special education, via special needs education, to integration and inclusion has been lined © The authors and Studentlitteratur

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with interpretations and misinterpretations, satisfaction and dissatisfaction. Another reason for the dilemma is that special education has a normative character, which means that there often exists a national, officially sanctioned, politically correct recommendation for how certain problems should be viewed and solved in schools. This is particularly valid for educational practice, and one consequence is that such solutions differ considerably from scientifically grounded, more neutral and problematised solutions. To make this problem even more complicated, it seems that more than one “politically correct” point of view exists at the same time. One example is the drive for inclusive education where all students are regarded as resources (SOU, 1999:63, p. 192) and another is the increasing demand for diagnoses in order to create financial resources for special education (Tideman, 2000; Skolverket, 2000). Yet another example is the parallel official policies of, on the one hand, promoting a school for all where the students are regarded as equal and, on the other hand, a grading system based on competition, which apparently excludes students. The former policy is based on integration – of students and of the subjects taught as well. The latter presupposes segregation of subjects, and of students, so they can be judged and assessed individually in order to receive appropriate marks. A third reason for the dilemma is that it is often necessary to emphasise “the special” in order to see “the general” in (special) education. This dilemma becomes especially apparent in research, as well as in practice, if one tries to approach special-education problems in relation to the total school practice, and avoids seeing these problems as special qualities connected to particular people. In spite of these dilemmas, a certain development seems to have taken place. A view in which all human beings, and especially students in schools, are regarded as equal, with a broad definition of “normality”, seems to be receiving more and more recognition. Furthermore, the policy of “a school for all” has strong support and the new classification by the World Health Organisation, the “International Classification of Functioning, Disability and Health” (ICF) (WHO, 2001), stresses a health perspective and considers and includes all human beings, not only those “with special needs”. The new basic teacher-training programme in Sweden is also aimed 250



at the education of all students, and it is emphasised that all students should be seen as resources in school practice (SOU, 1999:63). The big challenge is – from a political and an activity point of view – how the preschool and the school should handle the fact that students have different prerequisites, experiences, knowledge and needs. How can students’ differences appear as resources and take steering conditions for the pedagogical work in the school in a direction that is best for all students? (p. 192, my translation).

Thus, from an educational point of view some, both national and international, political and ideological trends seem to point in a certain direction – to “a school for all”. This trend has been underpinned step by step for some decades now, starting with the idea of normalisation of care (see, for example, Nirje, 1969; Wolfensberger, 1972), followed by integration in schools (see, for example, Söder, 1979). The first international classification (ICIDH 1980 – the predecessor of the ICF 2001) made a difference, too, by introducing a new contextual and relational interpretation of disability. Mårten Söder has discussed this notion of disability from a Swedish point of view in connection with the UN international year of the handicapped 1981 (Söder, 1982). It is also interesting to note, in this context, the new view of special education revealed in the Swedish Government Report on Teacher Training (SOU, 1999:63).

A retrospective outline In Sweden, the first attempts to begin regular education of “disabled children” were made in 1809, when Pär Aron Borg started an institute for blind and deaf children in Stockholm. Borg is also said to have taken care of some children with intellectual disabilities as early as 1829 (Svensk Uppslagsbok IV, 1931, p. 630), but the first attempts at educating children with intellectual disabilities is generally credited to Rev. Pontus Glasell, who gave classes to deaf children in Gothenburg and also accepted some “idiots” at his “School of Silence” in 1863. In 1866 the education of children with intellectual disabilities in Gothenburg was taken over by Emanuella Carlbeck, the real pioneer in this field in Sweden. In 1870 the government decided to give financial support to her “idiotskola” (school © The authors and Studentlitteratur

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for idiots) as well as to a similar school which had been inaugurated at the same time in Stockholm (see also Rosenqvist, 1978). After 1870 the number of schools was steadily increased on a voluntary basis until 1944, when a law (SFS 1944:477) made schooling for the “educable mentally retarded” (EMR) compulsory. This law was extended in 1954 (Act on the Education and Care of the Mentally Retarded, SFS 1954:483), and in 1968 the new so-called “Omsorgslagen” (Care Act, SFS 1967:940) was put into effect, including education for profoundly intellectually disabled children. In comparison it could be mentioned that schools for deaf children in Sweden have been compulsory since 1889, and those for the blind since 1896. Sweden has a long tradition of democracy and equality and, in connection with this policy, there was an early discussion during the Second World War about the creation of a comprehensive or “uniform” school (Swe. “enhetsskola”). In the mid 1960s, “grundskolan” was accepted in the sense of a comprehensive school for all, from grade one through nine. However, not all pupils were part of this “school for all”. Schoolchildren with slight “special needs”, such as learning difficulties, attended grundskolan at least through grade nine, but those with more severe learning or physical disabilities were still receiving their schooling in separate settings (special school), or in separate classrooms, e.g. “hjälpklass” (help-class). However, gradually more and more of the pupils with special needs were kept in, or moved back to, grundskolan, where they could get extra support from the “special teacher” in the classroom or in the so-called “clinic” – a separate room where the special teacher gave occasional instruction to individuals or small groups of pupils. Today, almost all children and youngsters with special needs, including the physically disabled and the blind, get their instruction in the regular classroom with extra support when needed, and sometimes have a personal assistant by their side. Two exceptions are deaf pupils and pupils with intellectual disabilities. The former group has volunteered to stay outside the regular comprehensive school, claiming that “they would feel segregated if integrated”, since they cannot communicate with hearing classmates. The latter group, the “pupils with severe learning disabilities”, remain to a

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large extent in their own separate classes, even when their classrooms are situated in ordinary school buildings.

Some crucial concepts In the development of school policy and practice in the Scandinavian countries over the last three to four decades, certain concepts have taken the lead in forming special-education practice. Normalisation and integration have provided two weighty guidelines, especially when the discussion is about students with distinct disabilities such as severe intellectual disabilities (formerly: mental retardation) and physical or motor dysfunction. The understanding of what normalisation meant became split very soon after the appearance of the concept. Sandvin (1992), and also Rosenqvist and Tideman (2000), proposed a “Scandinavian”, more context-dependent standpoint and understanding of the concept in contrast to an “American”, more normative point of view. The former view implies that the opportunities for a person with some kind of dysfunction to live a more normal life could be essentially improved through intervention in their surroundings. The latter view proposed a normalisation of the individual; that is, that the person should learn how to correct and compensate for obstacles caused by the dysfunction. In connection with this, it might be of interest to mention the motto of a conference held in Gothenburg, Sweden, in January 2000: “Normality – Deviance – Differentiation”. The motto manifests some trends and indicates a new direction for issues in special education. In addition, this trinity of concepts raises questions as to which students are the focus for special-education measures, and the three words could also make a useful tool for analysis in specialeducation investigations. As compulsory schools have been busy identifying deviant pupils and finding ways to remedy them since the beginning of their history, the interpretation of the concepts in the above-mentioned trinity has been of utmost significance. In order to comprehend what is deviant, you have to have an opinion about what is normal. And once you have categorised the deviant pupils, you must know what to do with them, how to treat, or remedy them “so that they © The authors and Studentlitteratur

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can become normal”. The different ways of handling this problem could be called differentiation. Differentiation can be viewed as having two sides, one positive, one negative, from an inclusive point of view. The negative side is apparent when pupils are separated from the rest of their classmates in order to “receive treatment”. In Sweden this remediation of individuals or small groups of pupils in what used to be called the clinic was the most common form of special education until recently. Gradually, especially during the 1980s, remediation began to be carried out in the classroom by a designated “special teacher”, but was still regarded as special or remedial education. This step led to a more positive interpretation of differentiation called “individualisation within the framework of the school class” in the government report “Skolans inre arbete” (The inner working of schools) (SOU, 1974:53). This standpoint paved the way for what could be seen as inclusive, rather than special, education. Thus, the way the school defines normality and deviance respectively, and the way education is differentiated, have great importance for how special education is organised in practice.

Some important studies Another issue of interest is the role of the special-education teacher. In Sweden there are two categories with different qualifications working side by side – the former, traditional “special teacher”, educated before 1990, and the modern “special educator” educated after 1990. The old organisation of special education came under criticism during the 1970s. Ideas about the special teacher as consultant or “supervisor” were put forward, for example by Emanuelsson (1983) in a report called “Verksamhet bland elever med svårigheter eller arbete med elevers svårigheter” (Activities among students with difficulties or working with students’ difficulties). These ideas paved the way for a change in the role of special teachers, enabling them to plan for longer-lasting goals. A governmental report (DsU, 1986:13) was drafted as a consequence of these ideas. In the report, a new qualification of “specialpedagoger” (special educators) was suggested, which was to replace “specialläraren” (the special teacher). 254



The new special training was intended to give a threefold competence, including the special educator as educator, as developer and as investigator, over three semesters. This new teacher-training programme came into effect in autumn 1990. It replaced the former two-semester special-education teacher programme, based on competency to give special education to students with difficulties in reading and writing, students with slight and severe learning disabilities, with math difficulties, with visual problems and students who were considered insufficiently mature to start school in the regular class. Some studies of special education during the 1980s and 90s continued to problematise special-education issues in the same spirit as Emanuelsson (1983). In 1988 two different ways of thinking about former students in the special school for the intellectually disabled were identified with regard to their opportunities on the labour market after school (Rosenqvist, 1988). Only a few of these students were able to find regular work on the open labour market and the teachers in the special school for the intellectually disabled were asked how they interpreted this fact. The majority of the teachers said that the reason lay with the student or within her or his family. Only a few teachers could see reasons beyond the individual, such as attitudes among workmates or employers, obstacles created by the school itself or the career guidance within the special school for the intellectually disabled, or other hindrances linked, for instance, to the market system. This was an indication that teachers regarded the student as “the carrier of the problem”. Even more important in this context was a study carried out by Persson (1998) in which he pointed out two perspectives of the mission of special education. He found that the traditional way is to see special education from a categorical perspective whereby students in special education are seen as “students with difficulties”. The other perspective, the relational, tries to see the “student in difficulties”. The latter perspective keeps open the possibility that the school itself may have created the problems that the student experiences, while the former still sees the student as “the carrier of the problem”. In the former case the solution is to differentiate the students, for example in “clinics” or through other separate or segregated instructional arrangements. From the latter perspective, the


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solution must be to differentiate the instruction, so that each student gets what s/he needs for the time being. Quite a few studies of education for students with severe learning disabilities in the regular classroom have been carried out since the first “integration attempts” were made in the mid 1970s. Most of these studies – with some few exceptions – have focused on contextual attitudes or organisational problems. One exception is a study by Karlsudd (2002) which focuses on educational conditions in seven project schools practising collaboration between students registered in the special school for the intellectually disabled and students registered in the regular school. Karlsudd discusses what he calls “the special education contradiction”, constituted by two rather disparate approaches to the project schools. These approaches are called “the narrow” and “the wide activities, respectively. The former, which is the most common approach, is characterised by compensatory measures for the students from the special school for the intellectually disabled. It is devoted to instructional methods and skills, and the basic subjects, i.e. Swedish and maths, are the focus of the activities. The other approach, the wide activity, is characterised by a wellanchored ideological attitude. The focus is on similarities (between students) and possibilities (for learning), and all members of staff are engaged in the collaboration. In the latter schools, positive attitudes and acceptance of the “students with special needs” were found. The instructional process was devoted to subject areas such as ethics, moral issues, equality and solidarity, issues that were integrated in the regular subjects. The conclusion drawn by the author is that when the school staff have a frame of reference in common it is easier to evaluate the activities, which in turn increases the possibility of a more profound integration (Karlsudd, 2002).

“The big challenge” Many of the “special teachers” (trained from the categorical perspective) are still working in schools together with the new special educators (who are supposed to work from a relational perspective) and this has led to some confusion about what should be done and 256



who should do what. Special teachers were offered a training in how to take care of – or to remedy – pupils’ shortcomings. The modern special educator, however, is supposed to form a hub in the teacher-team with the aim of influencing colleagues to reorganise the teaching process so that all pupils are really included in the educational process. The question is whether the special educators will also be able to bridge the gap between the two ways of interpreting special education and the aim of “a school for all”. Some answers to these questions can be found in an investigation carried out in comprehensive schools in southern Sweden with a focus on how the staff comprehended the task of special education as set out in the quotation above from the government report on teacher training (SOU, 1999:63). The results, reported in the study entitled “The big challenge – to see deviance as a resource in schools” (Tideman et al., 2004), give evidence of a rather pessimistic and categorical view of students. The theoretical standpoint for the study was that the way normality and deviance are defined, and the way education is differentiated, have great importance for how special education is organised in practice. Thus, it was of great interest to investigate schools from such a perspective. The study aimed at finding out how teachers – including classroom teachers, special educators (including special teachers) and head teachers – as well as politicians, students and their parents, understand special or inclusive educational phenomena, and what they think about normality and deviation, with regard to: • which pupils were assessed as deviant • how these pupils were categorised, and • how they were taught The study was carried out partly from a so-called “teacher-thinking perspective” (see, for example, Hargreaves, 1994). Thus, the study was designed with a broad approach including: • a survey of 100 schools of different character, including the existence or not of pupils in severe learning difficulties (former: mentally retarded pupils) • “case studies”, i.e. a close look into ten schools of different character © The authors and Studentlitteratur

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• interviews with the staff and people comprising a rich spectrum of questions and themes • cross-comparison of the schools involved and of the groups of people interviewed The study also focused on the role of the special-education teacher. As mentioned above there are two categories with different qualifications working side by side – the former, traditional “special teacher”, educated before 1990, and the modern “special educator”, educated after 1990. This fact seems to lead to some confusion in the schools about what should be done and who should do what. Since a number of “special teachers” are still working in the schools, it is apparent that representatives of the two qualifications are in striking contrast to each other. One objective of the study was to investigate what impact this has on the way schools are organising their “special education needs”. Further, special-education dilemmas are apparent in the study, which in turn raises questions such as: should diagnosis or need decide the special-education measures? Should the students or the education be differentiated? Should the school strive for equality or could difference be seen as a resource? In the study we saw a number of ways of organising the special pedagogical work. Among other things we have found that the size of the school seems to have an impact on the organisation of the special pedagogy. The bigger the school, the more segregated the special education, and it seems that small study groups are often the organisational solution and that these groups tend to be permanent. It could also be concluded that in some schools special-education issues were the responsibility of all the staff, whereas in other schools these issues were dealt with only by the special teacher (or the special educator). Some other crucial findings were: • none of the interviewed students saw themselves as a resource and in many cases the student was seen as the carrier of the (special education) problem • there was a big gap between rhetoric (in the interviews) and reality with regard to “a school for all” 258



• what was classified as special-education problems in one school was seen as regular education in another • there was a multitude of local solutions when it came to specialeducation measures with considerable variation among schools and municipalities • the new goal-related grading system, reduced resources, and increased academic demands have led to “a higher hurdle” • this in turn leads to the special-education measures being directed more towards helping the student jump over the hurdle in order to “pass” the national tests One conclusion from the findings is that the special educators with diplomas are apparently being forced to work in a traditional special-education paradigm. Special educators working in accordance with the modern aims of special pedagogy were rare. Another somewhat surprising finding was that it was the regular classroom teacher who was apparently in charge of deciding who should receive special education, as well as dictating the content of the “special treatment”. One explanation for this might be the many demands connected with the work of the classroom teacher which in turn could make these teachers exhausted. In the study we found that the classroom teachers had the role of gatekeepers. In spite of the special educators’ extra training, which lasted one and a half years longer than that of the regular classroom teacher, the former did not make the decisions as to how the special education should be carried out. On the contrary, there seemed to be a need for traditional special-education teachers rather than modern special educators in the schools. This, of course, raises questions about the professionalism of the latter.

Concluding remarks In the above-mentioned study by Tideman et al. (2004), we discuss the organisation of education in “a school for all”. One of the main obstacles to the instructional process from a relational perspective is the overall organisation of students into classes which receive their instruction in classrooms. In Sweden, no school legislation or curriculum mentions the words “school class” or “classroom”, but © The authors and Studentlitteratur

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the tradition is strong and the class still forms the point of departure for the school organisation. If this starting point was abandoned, a number of possibilities – not least in the spirit of the earlier mentioned “working environment in schools” reform (SOU, 1974:53) – could finally be explored. The working environment reform included an expression for a radical approach to grouping students in its reference to “varying groups and group sizes”. This expression envisaged a flexible composition of students with regard to performance and number. The report by Tideman et al. (2004) envisages a model consisting of a large group of 100 students taken care of by a team of four to five teachers. The large group is then divided into different non-permanent subgroups. The subgroups could be either homogenous or heterogeneous. If, for example, a new stage is to be taught in mathematics, the students who have been “in difficulties” with maths could be put together in a smaller group in order to receive extra support in this subject area. Other similar homogenous groups could be formed within the large group. If spelling issues are to be addressed, other forms of homogenous groups could be formed. The idea is that these types of group should only occasionally be the same. On other occasions and with other subject areas, the grouping could be made with a heterogeneous ambition. This could, for instance, be the case when the students are working with problem solving or other kinds of problem-based learning. The idea here is that the students should learn from each other and that every student thus has a chance to “be a resource”. Another idea presented in the report is to enable understanding of the real meaning of inclusion in contrast to the different interpretations of “integration”. Integration, as a term for what is nowadays called inclusive education in the English-speaking world, has been worn out and misinterpreted. One of the misinterpretations is that the students coming from special-education schools should have to adapt to the other students in order to be accepted in the “integrated classroom”. Corbett and Slee have formulated a good reason for using the term inclusion instead of integration which they see as a form of adaptation or assimilation when they say: “Inclusion is not assimilation, it speaks to the value and contribution to the patterns within the social mosaic” (Corbett & Slee, 2000, p. 143). 260



In such a social mosaic everybody would be accepted with her/his shortcomings and merits. In such a constellation everybody could contribute some knowledge, i.e. be a resource.

References Corbett, J. & Slee, R. (2000). An international conversation on inclusive education. In: Armstrong, F., Armstrong, D. & Barton, L. (Eds). Inclusive education: policy, contexts and comparative perspectives. London: David Fulton Publishers, pp. 133–146. DsU (1986:13). Specialpedagogik i skola och lärarutbildning [Special education in schools and teacher training]. Stockholm: Utbildningsdepartementet. Emanuelsson, I. (1983). Verksamhet bland elever med svårigheter eller arbete med elevers svårigheter? En kunskapsöversikt [Activities among students with difficulties or working with students’ difficulties?] Stockholm: Skolöverstyrelsen. Hargreaves, A. (1994). Changing teachers, changing times. Teachers’ work and culture in the postmodern age. London: Cassell. Haug, P. (1998). Pedagogiskt dilemma: Specialundervisning [Pedagogical dilemma: special education]. Stockholm, Skolverket Karlsudd, P. (2002). Tillsammans: Integreringens möjligheter och villkor – Erfarenheter från ett projekt där mötet mellan särskola och grundskola fokuserats [Together: possibilities and conditions for integration]. Rapport D, 2002:1, Högskolan i Kalmar, Institutionen för Hälso- och beteendevetenskap. Nirje, B. (1969). Normaliseringsprincipen [The principle of normalisation]. Psykisk utvecklingshämning 71, 1: 1–9. Persson, B. (1998). Den motsägelsefulla specialpedagogiken [The contradictory special education]. Specialpedagogiska rapporter, Gothenburg: Göteborgs universitet, Institutionen för specialpedagogik, No. 11. Rosenqvist, J. (1978). Utvecklingsstörd eller utvecklingshämmad? Det är frågan [Intellectually disabled or intellectually inhibited?] Uppsala: Uppsala Universitet, Pedagogiska institutionen. Rosenqvist, J. (1988). Särskolan i ett arbetsmarknadsperspektiv – Om lärares och handledares uppfattningar av arbete och elevernas framtid © The authors and Studentlitteratur

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i arbetslivet [The special school for the intellectually disabled from a labour market perspective]. Stockholm: Almqvist & Wiksell International. Rosenqvist, J. & Tideman, M. (2000). Skolan, undervisningen och elever med funktionshinder: Ett diskussionsunderlag på väg mot en teori om specialpedagogik [School, education and students with disabilities. Towards a theory of special education]. Särtryck och småtryck, No. 875. Malmö: Lärarhögskolan. Sandvin, J. (1992). Fra normalisering til sosial integrasjon [From normalisation to social integration]. In: Sandvin, J.T. (Ed.) Mot normalt? Omsorgsideologier i forandring [Care ideologies in a state of change]. Oslo: Kommuneforlaget. SFS 1944:477. Lag om undervisning och vård av bildbara sinnesslöa [Act on the Education and Care of the Educable Mentally Retarded]. SFS 1954:483. Lag om undervisning och vård av vissa psykiskt efterblivna [Act on the Education and Care of the Mentally Retarded] SFS 1967:940. Lag angående omsorger om vissa psykiskt utvecklingsstörda [Act on the Care of the Mentally Retarded]. Skidmore, D. (1996). Towards an integrated theoretical framework for research into special education needs. European Journal of Special Needs Education 14, 1: 12–20. Skidmore, D. (1999). Relationships between contrasting discourses of learning difficulty. European Journal of Special Needs Education 11, 1: 33–47. Skidmore, D. (2004). Inclusion: the dynamic of school development. Maidenhead: UK, Open University Press. Skolverket (2000). Hur särskild får man vara? En analys av elevökningen i särskolan [How different can you be? An analysis of the increasing number of students in the special school for the intellectually disabled.] Dnr 2000:2037. SOU (1974:53). Skolan arbetsmiljö: Betänkande avgivet av Utredningen om skolans inre arbete – SIA [The working environment in schools]. Stockholm: Utbildningsdepartementet. SOU (1999:63). Att lära och leda [To learn and lead]. Swedish Government Report. Stockholm, Utbildningsdepartementet Svensk Uppslagsbok IV (1931). [The Swedish Encyclopaedia]. Malmö: Baltiska förlaget AB.

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Söder, M. (1979). Skolmiljö och integrering. En empirisk studie av särskolans integrering i olika skolmiljöer [School environment and integration]. Uppsala University, Dept. of Sociology. Söder, M. (1982). Handikappbegreppet – en analys utifrån WHO:s terminology och svensk debatt [The concept of disability – an analysis of the WHO terminology and Swedish debate]. Stockholm: Socialdepartementet. Tideman, M. (2000). Normalisering och kategorisering [Normalisation and categorisation]. Stockholm: Johansson & Skyttmo förlag. Tideman, M., Rosenqvist, J., Lansheim, B., Ranagården, L. & Jacobsson, K. (2004). Den stora utmaningen: Om att se olikhet som resurs i skolan [The big challenge: to see deviance as a resource in schools]. Högskolan i Halmstad & Malmö Högskola. Wolfensberger, W. (Ed.) (1972). The principle of normalization in human services. Toronto, National Institute on Mental Retardation. WHO – World Health Organisation (2001). International Classification of Functioning, Disability and Health, ICF.


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16 Tensions and dilemmas in the field of inclusive education

16 Tensions and dilemmas in the field of inclusive education Susan Tetler As a result, primarily, of developments in social justice, we have experienced a long history of shifts in the meaning of the terms that have been used to define people with disabilities, but a shift in language is not necessarily evidence of changes in social, cultural or material practice. The question is whether the same process is happening with the concept of “inclusive education”. Although this concept is underpinned by politics of change and social justice, it is at risk of being devalued as it is taken over by those at whom its original critical potential was aimed – and is becoming increasingly compromised by the politics of the standard agenda. This paper deals with some of the paradoxes, dilemmas and challenges embedded in the concept of inclusion, to which we have to relate constructively if inclusive education is not to end up as pure wishful thinking.

For decades, we have accepted the idea in the Scandinavian countries that our regular schools should include all learners – regardless of the type and degree of their disability. However, in practice, many children still experience feelings of loneliness, exclusion and inferiority. The question of whether there are limits to inclusion is therefore becoming ever more pressing – and, if there are limits, where they should be set. Ultimately, the answer depends on how the schools themselves understand their role. Do they perceive their task as one of allowing pupils with disabilities to be included in a group with an already established system of beliefs, values and norms to which they must adjust? Or, rather, do they see their role as creating a school culture that welcomes all pupils? If the former understanding dominates, the success of the inclusive efforts will largely depend on the disabled child’s adaptability to the more or less standardised norms, while the including learning community avoids responsibility. This means that the type and degree of a child’s disability will ultimately set the limit. This strategy of inclusion can be defined as a “normalise the child” approach. © The authors and Studentlitteratur

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If, however, the latter understanding dominates, it will be the degree of flexibility and comprehensiveness of the school that sets the limit of successful inclusion. The point of departure is that each child belongs to its local learning community and, therefore, the efforts are about creating a culture that avoids exclusion from that community. The responsibility lies with all of us – and requires a rethinking of the structure of the school: the curriculum, working methods, organisation, in-service training, etc. This strategy of inclusion can be defined as a “create flexible schools” approach. It is essential that we are aware of the kind of understanding on which we base our attitude to inclusion, because the strategies and methods we correspondingly apply will be aimed at doing different things. Using the former approach, we will typically try to adjust the children with disabilities whom we intend to include in our schools; make them fit in as far as possible. If using the latter approach, however, we will try to organise our schools in a way that is tailored to the needs of the children; make them involved as active participants on their own terms.

Which approach dominates in the Scandinavian countries? Studies of efforts towards inclusion in the Scandinavian countries show that we intend to implement the “create flexible schools” strategy. We agree to the idea that all learners – regardless of type and degree of disability – should be given access to our regular schools. However, it is the “normalise the child” approach that characterises our efforts in practice. Our pedagogical solutions have been individually oriented, while the school, as a system, has generally speaking remained unchanged (e.g. Emanuelsson, 1998; Dalen, 1999; Tetler, 2000). A typical solution has been to allocate remedial instruction to an included pupil and to delegate to a support teacher the responsibility of planning and carrying out an individualised programme for that pupil. This results in a curriculum that is often taught parallel to that of the rest of the class, as research has shown (Jensen, 1989). The problem is, however, that a parallel programme of this nature 266



(and with close back-up from a support teacher) risks isolating the “included” pupil, because other pupils and teachers in the class are deprived of responsibility for the activities taking place in the classroom. And the child, who needs above all to interact with its peers – which is precisely why it was included in the local school to begin with – becomes gradually excluded from the learning community, as Braadland has shown (1997). This method of implementing the idea of inclusion, which mistakes inclusion for individualised training, seems only to result in new forms of segregation, now within the framework of the regular school. The inclusive practice becomes problematic when this pattern of teaching and learning is predominant. Arguably, pupils with disabilities are physically present in the learning community, but a question mark must be set against the learning outcomes that these children achieve. Even if something new is taking place in a certain sense in inclusive classrooms, most teachers still act on the basis of the same fundamental assumptions that have characterised both mainstream education and special education up to now. These assumptions are so embedded in the cultural processes of the school that they are perceived as self-evident truths rather than assumptions that can be changed.

The gap between rhetoric and reality The huge gap between ideology and reality seems to be crucial for explaining the outcome of the efforts. Therefore, a project rationale should go beyond rhetoric and take a closer look at what is actually happening in inclusive classrooms. Which patterns of teaching and learning predominate, how do teachers motivate their pedagogical approach, and how does this appear to influence the pupils’ academic and social outcomes? With a view to answering these questions, Suzanne Carrington’s (1999) distinction between the two levels of a teacher’s educational platform looks very helpful. She distinguishes between teachers’ espoused theory (what they say they assume, believe and intend) and their theory in use (the assumptions, beliefs and intents which can be inferred from their behaviour). Thus, it is not sufficient to analyse documents such as government bills and decrees, which © The authors and Studentlitteratur

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probably reflect the official rhetoric but tell us nothing about practice, preparedness or priorities. Nor is it sufficient to pin down teachers’ self-perception by interviewing them, as they are rarely conscious of the hidden agenda embedded in school activities. Rather, an attempt to capture both teachers’ espoused theories and their theory in use calls for a field-study approach, using data-collection techniques such as participant observation and open-ended interviews with participants. In a wider sense, the challenge is to understand “the gap between the official ideology on the one hand and the everyday problems as experienced by people with disabilities on the other” (Söder, 1993, p. 52) in preparation for more specific strategies of solutions.

The nature of dilemmas It struck me, while observing classroom activities and interviewing teachers, pupils and parents, that conflicts and tensions are “eternal” in the sense that they seem inherent in the very idea of inclusion. Thus, the critical point is our understanding of this kind of conflict. Do we understand them as real contradictions, as dichotomies that defy productive synthesis? Or do we understand them as competing perspectives that can be a powerful tool for reflection and action, as Dianne Ferguson (2000) puts it? Conflict means collision between individuals, interests or perspectives. The solution of a conflict requires the choice of one alternative and renunciation of another, so the concept of conflict in the 20th century may be replaced by a more constructive concept of dilemma. In Greek, a dilemma means a “double sentence”: incompatible possibilities that are at the same time mutually exclusive and inclusive. No matter what we do, it is wrong. Dilemmas consist of complementary inconsistencies, so, in a sense, dilemmas are unfinished. In other words, being in a dilemma means to be enquiring, to be on track – without attaining one’s end (Bertelsen, 2000). According to Minow (1985), there are no simple solutions to the pedagogical dilemmas that teachers face in inclusive settings, but a heightened awareness of the dialectic processes enables teachers to find new and better ways of living with them. A critical question to ask, therefore, is how can we support teachers in complex inclusive 268



settings to help them cope with this kind of dilemma, how can we analyse situations of dilemma, and how can we gain experience and suggest appropriate pedagogical strategies that will bring dilemmas constructively into play?

Tensions and dilemmas in the field of inclusive education In my field study (Tetler, 2000), I identified five pedagogical dilemmas which teachers felt confronted them when they tried to create inclusive classrooms, and the solutions they often chose in order to deal with them: • Considering the individual vs. considering the classroom community • Special educators vs. general educators • Valuing diversity vs. striving towards a standards-based curriculum • The academic dimension of schools vs. the social dimension of schools • Being like others vs. being different

Considering the individual vs. considering the classroom community The first – and basic – dilemma of “considering the individual vs. considering the classroom community” is about meeting each child’s special needs and paying regard to the classroom community. In principle, this dilemma can be worked out in two ways which are largely determined by the teachers’ attitudes to diversity. If the teachers perceive diversity as a largely negative resource, which creates conflicting interests and thus has a harmful effect on the community, they will typically try to adapt pupils with disabilities to fit in with the rest of the community. However, if they perceive diversity as an essential contribution to the potentiality of the learning community, teachers will be more inclined to organise schools in such a way as to meet each child’s special educational needs and interests. © The authors and Studentlitteratur

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The strategy used to deal with this basic dilemma will also determine who is in charge of the responsibility for successful inclusion: the child with a disability or the learning community? Are the limits set by the individual’s ability to adapt to the standardised norms or by the school’s ability to create a flexible organisation that values diversity? Teachers often plan and carry out an individualised programme in order to meet pupils’ special educational needs; a curricular programme that is often taught parallel to that of the regular pupils. Thus, inclusion is implemented as special education brought into mainstream classrooms, along with a special curriculum and materials, specially trained teachers and special teaching techniques. However, this dilemma does not require the choice of either the individual or the community. Rather, the challenge is to pay attention to each child’s story as well as to how that story can be woven into the other children’s stories. In this way, a joint story will arise in which all the children can reflect themselves, and because the child learns that its contribution has been necessary to the joint story, it feels important and motivated. It has an opportunity to make its mark on the classroom which can be recognised or recovered as that child’s contribution. The child is no longer merely an onlooker but has become an active participant. Ultimately, this dilemma is about the nature of belonging: are pupils with disabilities in or of the class? Are they full members of the community of the class, or is their role that of a guest?

Special educators vs. general educators Similarly, the second dilemma of “special educators vs. general educators” also derives from the diversity of pupils, though more indirectly. When pupils with disabilities are part of the learning community, they are assigned additional resources, often in the form of the simultaneous presence of a regular teacher and a special teacher. This seems to give rise to a further dilemma, which is about how to organise their pedagogical work. Dividing the responsibility, so that the regular teacher takes care of the regular pupils while the special teacher is delegated the task of planning and carrying out an individualised programme for 270



pupils with disabilities, seems to produce new forms of segregation, but now within the framework of the local school. In these classrooms we see a teaching pattern of parallel activities that often isolates pupils with disabilities. Also, this pattern may give rise to problems of cooperation, because the special teacher has to subordinate her/his work to that of the regular teacher. Working as a team with a shared responsibility for all the learners in the classroom, in planning, in teaching and in cooperation with the parents, seems to facilitate the creation of a more inclusive atmosphere. The special educational qualifications are not superfluous but become part of the joint qualifications of the team. Moreover, this pattern provides an opening for the pupils to support each other in “natural” ways. However, this kind of intimate collaboration requires a number of basic discussions to enable the adoption of a joint pedagogical approach.

Valuing diversity vs. striving towards a standards-based curriculum Education in the Scandinavian countries is based on the comprehensive school system, in line with the principles of our democratic societies. Therefore, the school system is under an obligation to offer a meeting place for pupils from various settings and to provide optimum conditions for them to grow and develop, despite their diversity. This plurality of ideas and values represented in the school makes it necessary for teachers and pupils not only to learn to deal with diversity but also to respect each other’s diversity, if sustainable solutions are to be worked out. Our Education Acts and decrees on special education promote the principle of differentiation of teaching and learning to ensure each pupil’s learning outcomes, as this principle acknowledges children’s diverse learning approaches and expressions of learning. At the same time, however, we see an increased striving towards standards-based norms in order to raise academic excellence in our schools. As a result, the Department of Education in Denmark, for example, is planning to develop distinct objectives for each school subject and to publish the results on the Internet. In consequence, there is a third dilemma of whether, how and to © The authors and Studentlitteratur

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what degree pupils with disabilities should be adapted to basic standards of the curriculum. My field study indicates that teachers are keener to differentiate curriculum, time and teaching techniques in a way that keeps the community in focus when it comes to practical subjects, arts subjects and interdisciplinary project work. In these cases, they seem more courageous about going beyond the boundaries of tradition in order to embrace all the pupils’ individual and joint interests, needs, experiences and potentials. In academic subjects, on the other hand, their teaching is mainly standards based, and if some pupils are unable to achieve the required standards, they are removed to other settings, such as resource centres.

The academic vs. the social dimension of schools The fourth dilemma is about the balance between the academic and social dimensions of schools. We know that children’s participation develops social, cultural and communicative skills, and different points of view may facilitate this development. Age peers become significant partners in these processes, and teachers play a similarly important role in creating opportunities for social relations. A tension, however, arises when schools are also put under great pressure to focus on basic skills, as is the case with Danish schools at the moment due to the international comparative studies in reading, math and science skills. Consequently, teachers argue that they do not have time for social activities in their classes, such as field trips, camping holidays, school parties, and so on. They seem, therefore, to mistake activities which involve “being together” for collaborative activities. While “being together” is perceived as a social activity without a well-defined goal – and therefore as less binding or committing, collaboration always involves a goal that one tries to achieve through various activities (Rabøl, Horn & Robenhagen, 1992). Thus, collaborative work is seen as the framework for both the pupils’ learning and social outcomes. Instead of seeing the academic and social dimensions as separate areas of school life, the challenge is to integrate them in order to facilitate the development of caring and reciprocal relations as well as academic skills. 272



Being like others vs. being different The dilemma of “being like others vs. being different” seems to make teachers reflect on how to give pupils with disabilities the best possible conditions for developing their “self”. In his theory of selfobject and self-subject relationships, Jan Tønnesvang (2002) points out that the presence of four different self-objects, including mutually mirroring self-objects and challenging self-objects, in the individual’s environment is necessary for an optimal development of identity. Like other pupils, children with disabilities need to have relationships with people like themselves, with whom they can have a private conversation without fear of losing face, and who intuitively understand because they have similar experiences (Gustavsson, 1997). The problem of how to accomplish this in an inclusive setting, however, gives rise to a further dilemma for the professionals involved, due to a lack of opportunities in the local schools of mutual mirroring for pupils with different kinds of disabilities. Therefore, schools should undertake to offer children with disabilities various learning arenas. Week-long courses, field trips and interactive media could, for example, provide opportunities for connecting with other children with similar problems. Admittedly, there are some positive aspects to belonging to two worlds, but there is also an inherent possibility that the individual will have to relate to dilemmas about who s/he is or should be. For teachers, the challenge is to develop acceptance and recognition that all pupils in the class are mutually connected in spite of their diversity. Out of consideration for their development, however, children also need to have relations with peers with different and therefore challenging perspectives, as research shows that young people with disabilities are often deprived of a chance to influence their own living conditions (Høgsbro et al., 1999; Ringsmose & Buch-Hansen, 2004). Therefore, they need the opportunity to be involved in and committed to their own learning processes, even if they find it difficult to express their intentions verbally or to advance their case in other ways. It takes great creativity, perseverance and empathy for teachers to identify pupils’ wishes and transform them into a sustainable prac-


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tice. In particular, it requires reflections on how to find a balance between such incompatible processes as support and challenges for each child, help and independence, protection and autonomy, security and elements of risk, with a view to encouraging active participation (Tetler, 2002). In this way, schools may become more aware of each pupil’s process of self-development in order to counter a social career in which the individual has internalised independence, passiveness and resignation.

Conclusion The starting point for the idea of inclusion was the reconceptualisation of “differences”. Instead of designating differences, the plurality of the community was to be celebrated. However, Sedgwick (1994) has demonstrated convincingly that the concept of diversity is located within the politics of liberal pluralism and, as a consequence, “valuing diversity” is on its way to becoming an increasingly empty term. Thus, the subject of inclusion is characterised by tensions and dilemmas that are deeply rooted in our understanding of disability and normality in educational practice and have for decades characterised schools’ activities and the socio-economic contexts of which the school as an institution forms part. Inclusion is about attitudes and joint responsibility. The school system cannot cope with the task of implementing inclusion on its own, but the very fact that the school system is becoming the only area in society where almost everybody – across social background, ethnic origin and individual qualifications – meets for any length of time, gives it a particular responsibility. In order to perceive the above-mentioned pedagogical dilemmas as competing perspectives rather than incompatible possibilities, teachers must be conscious of the inconsistent tendencies in their own practice – not only of their expectations of consensus. This kind of dilemma does not require an either/or choice. Although the dilemma is characterised as an impossible choice, it also has the potential to open up new possibilities and become an incentive for learning and personal development. So what really matters is that we should attempt to allow both perspectives, which calls for different solutions in different situations. Ultimately, dilemmas chal274



lenge teachers to find ways of incorporating the tension with a view to developing sustainable both/and strategies.

References Bertelsen, J. (2000). Dilemmaet som lærer – om undervisning med læring gennem dilemmaer [The dilemma as a change-agent – education with learning through dilemma situations]. PhD dissertation. Copenhagen: Danmarks Lærerhøjskole. Braadland, N. (1997). En skole for alle – alle inkludert [A school for all – everybody included]. In: Tøssebro, J. (Ed.). Den vanskelige integreringen [The difficult integration]. Oslo: Universitetsforlaget, pp. 58–83. Carrington, S. (1999). Inclusion needs a different school culture. International Journal of Inclusive Education 3: 257–268. Dalen, M. (1999). Den inkluderende skole – idealer og realiteter [The inclusive school – ideals and realities]. In: En skole for alle i Norden. Et festskrift i anledning af den 20. nordiske kongres i Stavanger: “100 års nordisk samarbejde omkring undervisning af elever med særlige behov” [Education for all in the Nordic countries. A Festschrift on the occasion of the 20th Nordic congress in Stavanger: “100 years of Nordic cooperation on the teaching of pupils with special needs”], pp. 19–28. Emanuelsson, I. (1998). Integration and segregation – inclusion and exclusion. International Journal of Educational Research 29: 95–105. Ferguson, D. (2000). Disability, diversity, and 21st-century school reforms: status and reflections. Paper presented at the Research Conference: “Normality, deviance, differentiation”, at the University of Gothenburg, 5–6th February 2000. Gustavsson, A. (1997). Att ta vid där Goffman slutade [Carrying on from where Goffman left off]. In: Sonnander, K., Söder, M. & Ericsson, K. (Eds). Forskare om utvecklingsstörning. Perspektiv, kunskaper, utmaninger. [Researchers into intellectual disability. Perspective, knowledge, challenges]. Uppsala: Uppsala Universitetsforlag. Høgsbro, K., Kirkebæk, B., Blom S.V. & Danø, E. (1999). Ungdom, udvikling og handicap [Youth, development and disability]. Frederiksberg, Samfundslitteratur. © The authors and Studentlitteratur

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Jensen, P.E. (1989). § 19.2-elevers integration [§ 19.2-pupils’ integration]. Copenhagen: Forlaget Skolepsykologi. Minow, Martha (1985). Learning to live with the dilemma of difference: bilingual and special education. In: Bartlett, K.T. & Wagner, J.W. (Eds). Children with special needs. Boulder: Transaction Books. Rabøl, V., Horn, I. & Robenhagen, O. (1992). Undervisningsdifferentiering – idé og grundlag. [Differentiation of teaching – concept and basis]. Vol. 1. Copenhagen: Danmarks Pædagogiske Institut. Ringsmose, C. & Buch-Hansen, L. (2004). “Der er nogen der hæmmer min udvikling”. Et studie i udviklingshæmmedes livsvilkår i Danmark. [“Someone is restricting my development”. A study of the living conditions of the intellectually disabled in Denmark]. Specialpædagogik 1: 3–10. Sedgwick, E.K. (1994). Epistemology of the closet. London: Penguin. Söder, M. (1993). Normalisering og integrering: omsorgsideologier i et samfunn i endring [Normalisation and integration: ideologies of care in a changing society]. In: Sandvin, J. T. (Ed.). Mot normalt? Omsorgsideologier i forandring [Care ideologies in a state of change]. Oslo: Kommuneforlaget. Tetler, S. (2002). Skolelivskvalitet i den inkluderende skole [Schoollife quality in the inclusive school]. Kognition & Pædagogik 22: 32– 44. Tetler, S. (2000). Den inkluderende skole. Fra vision til virkelighed [The inclusive school. From utopian idea to reality]. Copenhagen: Gyldendal. Tønnesvang, J. (2002). Selfobject and selfsubject relationships. In: Goldberg, A. (Ed.). Progress in self psychology, vol. 18. Hillsdale, NJ: The Analytic Press, pp. 151–168.

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17 Participation and general competence

17 Participation and general competence Mats Granlund and Eva Björck-Åkesson

Children in need of special support comprise a heterogeneous group in terms of their abilities, problems and needs. The common denominator is that they are children who need to participate actively in the events of their lives just as other children do. In addition, these children and their families meet with professionals from different organisations who provide services aimed at relieving their problems and increasing their general quality of life. These services can, in a broad sense, be defined as interventions. Intervention is a super-ordinate concept for the different intentional steps taken to change people, interaction, events or environments in a desired direction. Interventions can be focused on individuals, groups or society and can last for extensive periods, sometimes for life. In intervention, both specific convergent problems and general divergent problems can be intervened with (Rappaport, 1981). Specific convergent problems are characterised by solutions that gradually converge toward best-practice recommendations. In intervention research for children in need of special support, questions that adhere to this perspective focus on the causes of impairments, type of disability and interventions aimed at preventing specified impairments and atypical development. General divergent problems, on the other hand, such as the context-dependent problem of participation, result in the development of several logical answers, which are sometimes paradoxical. The aim of this chapter is to discuss theoretical and methodological problems in studying the general-divergent phenomenon of participation as a focus for intervention for children in need of special support. Participation can be defined as “involvement in a life-situation” (WHO, 2001, p. 7). This definition is strongly related to the current emphasis on positive aspects of functioning in psychology (Selig© The authors and Studentlitteratur

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man, 2001), which stresses positive experiences in the past and present, and constructive cognitions about the future. The same general factors as for other children seem to be related to a high degree of participation for children with disabilities (Almqvist, accepted; Almqvist & Granlund, accepted; Eriksson & Granlund, 2004). The factors include both person-related factors, such as autonomy and internal locus of control, and also interaction skills and environmental factors, such as availability of activities and social attitudes. Despite the importance of general factors for positive outcomes, most intervention studies of children with disabilities are focused on groups of children delimited by diagnosis or disability-specific characteristics. This choice of subject-selection procedures implies that negative characteristics, such as type and degree of disability, have a strong relationship with the phenomena under study. Diagnoses, and type and degree of disability can be analysed from two perspectives: constitutive characteristics; that is, how the constructs on which the diagnosis is based are related to each other, and operational characteristics; that is, how the diagnosis is operationalised in some observable characteristics. It is important to discuss these perspectives together in relation to intervention research.

Constitutive characteristics and their operationalisations One general aspect of constitutive characteristics is whether a diagnosis or problem can be characterised as a problem with the body, activity or participation (WHO, 2001). The further from the body the problem is identified, the higher the number of influencing factors hypothesised to affect the type and degree of problem experienced (Peerenboom et al., 2003). Most diagnoses are related to problems with body function. Thus, the relative influence of diagnosis-specific factors decreases when general phenomena such as participation are discussed. Most assessment activities and intervention activities for children in need of special support focus narrowly on factors related to the type of problems with body function associated with a certain type of disability, or diagnose specific fac278



tors within the individual (Björck-Åkesson, Granlund & Simeonsson, 2000). The constructs that these factors are based on frequently emanate from biological theories of human functioning or from theories in clinical psychology. As a consequence, most operationalisations in intervention research describe personal characteristics with hypothesised relations to these constructs. Such personal factors are almost exclusively described in negative terms, with the absence of symptoms or developmental delay defined as normal functioning. The whole intervention process is thereby focused on negative aspects of human functioning (Seligman & Csikszentmihalyi, 2000). In contrast, general positive outcomes and factors in the intervention process, such as positive personal characteristics (e.g. autonomy), interaction characteristics (e.g. proportion of turns) and environmental opportunities for participation, emanate from psychological, educational or sociological theories. They are seldom the focus for intervention; general factors are multidimensional which makes it difficult to have precise operationalisations of them. In addition, difficulties with applying multidimensional constructs to specific individuals result in research that, apart from diagnosis, includes no other personal factors. Much of the sociological and socio-educational research on the relative handicap construct (Söder, 1992) is in fact focused solely on societal and environmental aspects of the construct rather than on the interaction between subject characteristics and societal and environmental factors. A second aspect of constitutive characteristics is the time frame within which the phenomena are intervened with. The time frames of intervention can be described as existing on a continuum from short-term goals (weeks) over an intermediate time period (several months) to a lifetime perspective (years). Most intervention research has a narrow time frame in which specific interventions over a short period are evaluated in relation to specific skills that are hypothesised to be related to constitutive characteristics of the person. The long-term effects of a series of interventions in relation to outcomes such as participation are seldom the focus of interest. Sociological and socio-educational research focused on the life situation of people with disabilities seldom has a longitudinal design; that is, the time frame is not taken into consideration. A third aspect of constitutive characteristics involves the relations between the diagnosis/disability label and the actions taken © The authors and Studentlitteratur

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to induce change. Change activities rarely consist of a single intervention. Instead, interventions are better defined as “a menu of possibilities accompanied by a series of supports that facilitate consumer’s interaction with these possibilities” (Knapp, 1995, p. 7). The possibilities consist of the specific characteristics of one intervention, such as a specific theory, specific training materials, and of general characteristics inherent in all interventions, such as clientprofessional interaction or dependency on policies for type and intensity of services provided. The specific characteristics of interventions are the focus of most intervention research, for example early language stimulation that has development of spoken language as the desired outcome. However, many children in need of special support are the focus of parallel interventions for extended time periods, and general factors of intervention, such as childinterventionist interaction, may in the long run have a stronger impact on child participation than single specific interventions. General factors of intervention can be observed in the type of outcomes chosen as the target for intervention, the characteristics of the environment surrounding the intervention, the characteristics of the child and/or micro system, the characteristics of client-professional collaboration in the intervention process and, finally, the characteristics of professionals and their organisations. In conclusion, intervention research can be analysed in relation to the characteristics of the constructs used for assessment and intervention and their operationalisations. One strand of intervention research involving children in need of special support is currently performed as if the area consists of uni-dimensional phenomena in which one phenomenon at a time can be studied. Most intervention studies with this focus are designed with an explicit or implicit assumption that factors specific to a certain diagnosis and/ or label are important for the outcome. The application of this assumption is mirrored in the use of diagnosis or type of disability as a selection criterion for research subjects, the strong focus on disability-related assessment instruments highlighting personal characteristics in the intervention-planning process (Björck-Åkesson et al., 2000), and the lack of general outcomes. A second strand of research is focused on the impact of the disabling process in society on children and young people with disabilities, as a group. In this research tradition, there is also a focus on a 280



certain diagnostic category of disability in delimiting the group of research participants. Conceptually, much of this research is based on defining handicap as a relative construct in which the degree of handicap is dependent on both environmental characteristics and personal characteristics. The assessment or data collection process is, however, characterised primarily by investigating environmental aspects of the handicap construct without relating it to personal factors. The outcome is then described in general terms, such as participation or inclusion, without specifying the concrete meaning of these constructs for individual subjects. A third strand, combining the two strands described above, is needed. Several studies in recent years (Almqvist & Granlund, accepted; Hemingsson & Borell, 2002; Pollock & Stewart, 1998) indicate that the everyday functioning of children and youngsters with disabilities is a multidimensional phenomenon that is best explained by the joint impact of several influences. Diagnosis, or type and degree of disability, is just one of several factors influencing the outcome. Factors influencing everyday functioning have been identified both within the individual and on different levels of the ecological systems surrounding the individual. Effects of intervention focused on general outcomes need to be measured on an individual level, despite the problems with operationalising multidimensional concepts. The implementation of the third strand of intervention research for this population makes it necessary to base the research on theories that can handle complexity. Likewise, research methods should also allow for following the developmental trajectory of individual children over several influencing factors that act in concert (Shonkoff & Phillips, 2000).

Is a systems-theory approach to studying interventions for children in need of special support an option? The study of general factors in intervention for children in need of special support means confronting issues related to a complex, comprehensive and collaborative area of service delivery (Granlund © The authors and Studentlitteratur

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& Blackstone, 1999). Thus, studies based on theoretical constructs which are focused on complex patterns of factors affecting child development and service delivery are likely to lead the field of intervention for children in need of special support and their families toward better practices. Several research efforts regarding children in need of special support, their development and functioning have systems theory as one of their theoretical foundations (Bergman, Magnusson & ElKhouri, 2003; Sameroff & Fiese, 2000; Shonkoff et al., 1992; Shonkoff & Phillips, 2000). Systems theory suggests that all systems strive toward an endpoint or final state (Von Bertalanffy, 1968). Dynamic finality means that the outcome can be depicted as a process rather than a state and that the relationship among system parts in the process can change so that a desired outcome can be reached from different initial conditions and in different ways (equifinality). For intervention research, it indicates that the same outcome can be reached through several different types of intervention, or that the same intervention may have different effects on different children (multifinality). A systems-theory approach to research on interventions is focused on revealing system patterns and changes in patterns following from interventions. A requirement is that the critical factors of the system are known as well as the relations between the factors. Wachs (2000) has suggested that the research process in systems theory-based studies of children’s development should contain five steps. These steps can be applied to the study of interventions focused on participation. The steps, in conjunction with possible problems, will be discussed below.

1 Define the desired outcome There is specificity in the relations between outcomes and processes (Bergman et al., 2003). Not all factors within a system are related to a certain outcome. Thus, the desired outcomes of interventions have to be specified before the influencing factors can be identified (Wachs, 2000). Based on contemporary research describing positive health as a construct partly independent of not being ill (Snyder & Lopez, 2002), outcomes related to positive health are important 282



outcomes. One such outcome is participation in life situations by children and young people in need of special support. In Sweden, participation as an outcome has been investigated in a series of studies using qualitative design or mixed designs. Studies have investigated young children’s perceptions of well-being (Almqvist et al., in progress), school children’s perceptions of participation (Eriksson & Granlund, 2004), retrospective memories of play experiences of adults with disabilities (Sandberg, Björck-Åkesson & Granlund, 2004) and parents’ perceptions of involvement in decision-making (Carlhed, Björck-Åkesson & Granlund, 2003). Based on the studies and a literature review (Raghavendra et al., in preparation), it can be concluded that participation is a context-bound phenomenon that varies between life situations. The construct participation is built up from four components: (1) perceptions of engagement and motivation; (2) behaviour and activity; (3) information about contingencies and physical availability of niches, and (4) environmental prerequisites. These components can be related to a time frame from past to future, in which participation in the present situation is in focus. Perceptions of the present situation are affected by causal explanations attributed to earlier experiences and by estimations of one’s own capacity to perform in the future. They are also the products of perceptions of emotion and engagement in the present situation. Several research studies (e.g. Skinner, Zimmer-Gembeck & Connell, 1998; Almqvist & Granlund, accepted) report that the perceived degrees of participation in school activities of children with disabilities are statistically related to self-ratings of locus of control and autonomy. The behaviour and activity of a person in a present situation are affected by their knowledge base and skills as well as by their goals for the future. For example, children with intellectual disabilities who are more socially skilled at a young age have a denser social network in early school age (Sigman & Ruskin, 1999). Goals for the future that are specific and proximal (short-range) provide greater incentive, motivation and evidence of efficacy than goals that are abstract, vague and set in the distant future (Snyder & Lopez, 2002). According to niche theories (Bronfenbrenner, 1999; Super & Harkness, 1999; Wachs, 2000), a person acts on the environment based on his/her interpretation of the contingencies of the context © The authors and Studentlitteratur

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as perceived by him/her. As a consequence, availability is not an objective aspect of the environment but rather a subjectively perceived environmental characteristic. A recurring theme in a study of play experiences based on memories of play told by adults with disabilities (Sandberg et al., 2004) was that the respondents actively searched for access to niches that had a good fit with their skills and interests, and avoided niches with a bad fit. Environmental characteristics have an indirect impact on perceived participation by affecting a person’s interaction with his/her environment. General ratings of environmental characteristics frequently have low statistical correlations with perceived participation. In an investigation of the statistical relations between perceived participation and environmental characteristics in schools for children with disabilities, Eriksson (accepted) reports few statistically significant correlations between environmental characteristics and participation. One problem with identifying participation as the desired outcome of intervention is related to the fact that participation is a multidimensional process phenomenon. This makes it difficult to differentiate the dependent variable (outcome of intervention) from the independent variable (intervention). How many dimensions must be included in a study to say that participation is the focus of interest? Is it enough to study activity or must perceptions of belonging, motivation, etc., be included? Can an intervention (independent variable) be focused on a phenomenon identified as a dimension of participation, such as autonomy, if increased participation is the desired outcome (dependent variable)? One solution is to operationalise participation as a pattern of dimensions including factors in the child, the interaction and the environment. If this definition of participation is accepted, personal profiles within these patterns of factors can be compared before and after intervention for the subjects participating in intervention. A prerequisite for interpreting changes in personal profiles as intervention effects is that a change in the desired direction in the factor at hand, such as autonomy, can be identified.

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2 Use existing theory and knowledge base to identify critical factors to include in the studies As with participation, everyday functioning has been described as multidimensional processes in which the child is one system in a hierarchy of interrelated systems (Bronfenbrenner, 1999; Sameroff & Fiese, 2000). There exist mutual dependencies between systems at different ecological levels, which are displayed in interaction between systems. Therefore, phenomena on different levels have to be related in research aimed at understanding processes and outcomes of intervention. Bronfenbrenner described a developmental ecology containing the child, the micro system (the child’s immediate settings), the meso system (the interrelationships between immediate settings), the exo system (environments in which the child takes no active part but where things happen that directly affect the child), and the macro system (societal phenomena such as laws, attitudes and norms). In a revision of his theory, Bronfenbrenner (1992, 1999) identifies general critical factors that seem to be especially important for child and family functioning at each ecological system level and also adds a time-related chronosystem. An important issue in research is how factors important for participation can be identified, observed and intervened with on different ecological levels. The following general factors have been identified as critical for participation on different ecological system levels. At child level, developmentally promoting personal characteristics such as physical factors (e.g. physical ability), personal stimulus qualities (e.g. behaviour style, social skills) and developmentally structuring attributes (e.g. autonomy, locus of control) seem to be particularly important. Of these factors, physical factors, with their strong ties to diagnosis and type and degree of disability, are fairly well researched, while personal stimulus factors, and especially structuring personal attributes, are less so (Guralnick, 2001; Granlund & Wilder, accepted). At child–environment interaction level, important factors are the type and intensity of developmentally promoting interactions with people or objects that last over long time periods, and the properties of niches in which these interactions take place (e.g. adult–child interaction, child–peer interaction). Of these factors, parent–child interaction has been the primary focus of research, while interaction © The authors and Studentlitteratur

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with other people and interaction with objects has been less well investigated (Super & Harkness, 1999; Bronfenbrenner, 1999; Sandberg et al., 2004). At micro-system level, how people in the environment perceive the properties of the environment and the child; that is, the child’s perceived social competence, are critical factors. The child’s perceptions of the properties of the environment and of the person with whom the child interacts; that is, the availability of the environment as perceived by the child, are also of importance. In intervention research, children’s perceptions of their environment have been the focus of attention to a lesser degree than the perceptions of care providers (Bronfenbrenner, 1999). At meso-system level, Bronfenbrenner (1992) suggests that multi-setting participation; that is, the degree of similarity between home and preschool environment, inter-setting communications; that is, interaction between parents and professionals, and inter-setting knowledge; that is, family knowledge about the work of habilitation professionals, are critical factors. In intervention research, factors on the meso-system level have primarily been related to parental participation in intervention decision-making (e.g. BjörckÅkesson & Granlund, 1995). The relations between meso-system factors and outcome on child level is less well known. At exo-system level, the processes taking place between two or more settings, at least one of which does not ordinarily contain the child, such as collaboration between county council and primary community, have been suggested as critical factors (Björck-Åkesson & Granlund, 2004). Examples of exo-system factors are mutual trust and goal consensus between people involved in intervention. Intervention research regarding factors on the exo-system level has primarily been focused on team functioning (Granlund et al., 1999). Another focus of interest has been how the organisation of services is related to outcome on the child level, such as group size in preschool (Guralnick, 2001). How exo-system factors are related to the effect of intervention for individual children has not been well researched. At macro-system level, societal laws and regulations and the belief systems of significant others, such as parents, teachers and habilita286



tion professionals in the child’s world, have been identified as critical factors. They create a context that defines goals, risks and practices for intervention (Farran, 2000). In intervention research, macro-system level factors are the focus of interest for public-health research in which the effects of public-health interventions on groups are of interest. There is a paucity of research focused on public-health issues in relation to children and young people in need of special support. The question of which factors should be included in research on participation in life situations for children and young people in need of special support has been considered, based on the general critical factors on different system levels identified by Bronfenbrenner (1992, 1999). As discussed earlier, participation is a multidimensional phenomenon. Thus, factors identified as affecting participation are difficult to separate from factors which are to be included in the participation construct in the research design. The use of personal profiles will only partly alleviate this problem. One additional solution might be to include only those factors directly related to the person or the environments perceived by the person in the participation construct and to identify other factors as factors that affect participation.

3 Consider how many factors to include in the research endeavour Inherent to a systems theory-based approach to studying intervention is the inclusion of several factors in the research design. It is, however, not possible to include everything that has been reported as related to participation. One way to delimit the number of factors to be included is to look at patterns of relations between factors that have been identified as important. From each pattern of factors with dense interrelations, a representative factor can be selected or an index based on several factors can be constructed. For example, within the school-class system, participation in activities by children with disabilities is better predicted by patterns of interrelated personal and environmental factors, such as autonomy, interaction and perceived availability of the environment, than by single fac© The authors and Studentlitteratur

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tors (Almqvist & Granlund, accepted). In total, the results of earlier research indicate the importance of analysing the influence of patterns of influences rather than single influences in studying intervention for children in need of special support.

4 Investigate whether the identified factors independently influence interaction patterns, or whether they are structurally linked In an approach focused on analysing patterns of factors related to participation, factors occurring together with a probability greater than chance are especially interesting to study. Such structural links can be found both within a system level and between system levels. Regarding participation, structurally linked factors within the same system level have been identified in several investigations (Almqvist, in review; Almqvist & Granlund, accepted; Eriksson, accepted). Only a few studies have investigated links between system levels, and only low to moderate relations have been found (Granlund et al., 1999; Granlund et al., 2003). The relative lack of empirical evidence for structural links between system levels indicates either that such links do not exist or that longitudinal studies are needed to detect such links. One hypothesis is that the influence on participation of factors on other system levels than the individual or micro-system level can be detected primarily in conjunction with transitions between environments, such as shifting school class. Therefore, longitudinal research designs are needed to detect these links.

5 The selection of study design and methods for data analysis Research tasks focusing on multidimensional phenomena make it necessary to use research designs and methods of data analysis suitable for taking complexity into consideration. In the last decade, traditional categorisations of research methods into dichotomies, such as positivistic-hermeneutic or qualitative-quantitative, have been questioned (Bergman et al., 2003; Brannen, 1992; Wachs, 2000). An alternative categorisation is to place different research 288



approaches along a continuum from “pure” analytical designs to “pure” integrative systemic designs. A more analytical design is characterised by the study of one phenomenon at a time, a tendency to control within group variability, and a focus on separate units in data analysis. Examples of designs and methods with a high degree of analytical approach are quantitative main effect designs and qualitative phenomenological studies. A more integrative/systemic design is characterised by a focus on several phenomena and their interrelations, a tendency to include or study withingroup variability, a focus on patterns of relations between phenomena in data analysis and a preference for emphasising people in the analysis rather than variables. Examples of designs and methods with a high degree of integrative approach are person-based pattern analyses such as cluster analysis (Bergman et al., 2003), repertory grid analysis (Bower & Tylee, 1997) and Verstehende typenbildung (Stuhr & Wacholz, 2001). In between the extremes of the continuum, multivariate methods of data analysis are found, such as structural equation modelling and qualitative narrative designs. The study of multidimensional general factors over time requires a focus on integrative designs and research methods. They are used relatively infrequently in intervention research involving children and young people in need of special support.

Conclusion Participation is a multidimensional phenomenon that is best described as a pattern of factors with changes in pattern configurations over time. Therefore, in intervention research aimed at increasing participation in life situations of children in need of special support, a theoretical model and research designs that can handle complexity must be a high priority. Key issues are to delimit the multidimensional pattern participation from other factors that can affect this pattern. Interventions aimed at increasing participation can be focused on factors within the multidimensional concept of participation or factors affecting participation. Factors within the participation construct, as well as the factors affecting participation, frequently seem to be structurally linked. Therefore, the research © The authors and Studentlitteratur

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designs chosen to evaluate participation interventions must be able to take into consideration patterns of influencing factors (Stattin & Magnusson, 1996) that are aimed at identifying causal fields for the outcome of participation (Olsen, 1993). Thus, a design in which patterns of values within several phenomena for individual people are the focus of interest will produce data that are more informative in studying processes and outcomes of intervention for individual children and their families than a design in which one phenomenon or a set of well-defined variables are in focus.

References Almqvist, L. (in review). Patterns of health and engagement in young children with and without developmental delay: a personoriented approach. Journal of Policy and Practice in Intellectual Disabilities. Almqvist, L. & Granlund, M. (accepted). Participation in schoolactivities of children and youth with disability. Scandinavian Journal of Psychology. Almqvist, L., Hällnäs, P., Stefansson, M. & Granlund, M. (in progress). I can play – young children’s perceptions of well-being. Västerås: Mälardalen University. Bergman, L., Magnusson, D. & El-Khouri, B. (2003). Studying individual development in an interindividual context. London: Lawrence Earlbaum. Björck-Åkesson, E. & Granlund, M. (1995). Family involvement in assessment and intervention: perceptions of professionals and parents in Sweden. Exceptional Children 61: 520–535. Björck-Åkesson, E. & Granlund, M. (2004). Early intervention in Sweden: a developmental systems perspective. In: Guralnick, M.J. (Ed.). A developmental systems approach to early intervention: national and international perspectives. Baltimore: Paul H. Brookes. Björck-Åkesson, E., Granlund, M. & Simeonsson, R. (2000). Interdisciplinary assessment philosophies and practices in Sweden. In: Guralnick, M.J. (Ed.). Interdisciplinary clinical assessment for young children with developmental disabilities. Baltimore: Paul H. Brookes, pp. 391–411.

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Bower, T. & Tylee, A. (1997). Measuring general practitioner psychology: the personal construct perspective. Family Practice 14, 2: 142–147. Brannen, J. (1992). Mixing methods: qualitative and quantitative research. Aldershot: Avebury. Bronfenbrenner, U. (1992). Ecological systems theory. In: Vasta, R. (Ed.). Annals of child development. Six theories of child development: revised formulations and current issues. London, Jessica Kingsley. Bronfenbrenner, U. (1999). Environments in a developmental perspective. In: Friedman, S. & Wachs, T. (Eds). Measuring environments across the life span. Washington DC: American Psychological Association. Carlhed, C., Björck-Åkesson, E. & Granlund, M. (2003). Parent perspectives on early intervention: the paradox of needs and rights. The British Journal of Developmental Disabilities Vol. 49, Part 2, No. 97: 79–89. Eriksson, L. (accepted). The relation between school environment and participation in students with disabilities. Pediatric Rehabilitation. Eriksson, L. & Granlund, M. (2004). Conceptions of participation in students with disabilities and actors in their living environment. Journal of Physical and Developmental Disabilities 16: 229–246. Eriksson, L. & Granlund, M. (2004). Participation in school activities – a comparison between students with and without disabilities. Scandinavian Journal of Disability Research 6, 206–224. Farran, D. (2000). Another decade of intervention for children who are low income or disabled; what do we know? In: Shonkoff, J. & Meisels, S. (Eds). Handbook of early childhood intervention. London: Cambridge University Press. Granlund, M., Almqvist, L., Eriksson, L., Luttropp, A. & BjörckÅkesson, E. (2003). Delaktighet – sammanfattning av ett forskningsprojekt [Participation – summary of a research project]. Västerås: Mälardalens Högskola och Stiftelsen ala, Stockholm. Granlund, M. & Blackstone, S. (1999). Outcomes measurement in AAC. In: Loncke, F., Clibbens, J., Arvidson, H. & Lloyd, L. (Eds). Augmentative and alternative communication – new directions in research and practice. London: Whurr Publishers, pp. 207–228.


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Granlund, M., Steénsson, A.-L., Roll-Pettersson, L., Björck-Åkesson, E., Sundin, M. & Kylén, A. (Eds) (1999). Barn med flera funktionsnedsättningar i särskolan. [Children with multiple disabilities in the special school for children with intellectual disabilities Stockholm]. Stiftelsen ALA. Granlund, M. & Wilder, J. (accepted). Studying interaction between children who do not use symbols in interaction and their parents within the family system – methodological challenges. Disability and Rehabilitation. Guralnick, M. (2001). A developmental systems model for early intervention. Infants and Young Children 14: 1–18. Hemingsson, H. & Borell, L. (2002). Environmental barriers in mainstream schools. Child care, Health and Development 28: 57– 63. Knapp, M. (1995). How shall we study comprehensive, collaborative services for children and families? Educational Researcher 24: 5–16. Olsen, J. (1993). Some consequences of adopting a conditional deterministic causal model in epidemiology. European Journal of Public Health 3: 204–209. Peerenbom, R.J.M. & Chorus, A.M J. (2003). Measuring participation according to the International Classification of Functioning, Disability and Health (ICF). Disability and Rehabilitation 25, 11– 12: 577–587. Pollock, N. & Stewart, D. (1998). Occupational performance needs of school aged children with physical disabilities in the community. Physical and Occupational Therapy in Paediatrics 18: 55–68. Raghavendra, P., Granlund, M., Dada, S. & Schlosser, R. (in progress). Participation and intervention – a systematic review. Västerås: Mälardalen University. Rappaport, J. (1981). In praise of a paradox: a social policy of empowerment over prevention. American Journal of Community Psychology 9: 1–25. Sameroff, A. & Fiese, B. (2000). Transactional regulation: the developmental ecology of early intervention. In: Shonkoff, J. & Meisels, S. (Eds). Handbook of early childhood intervention. London: Cambridge University Press. Sandberg, A., Björck-Åkesson, E. & Granlund, M. (2004). Play in retrospection – play experiences from childhood in adults with vis292



ual disability, motor disability and Asperger syndrome. Scandinavian Journal of Disability Research 6: 25–44. Seligman, P. (2001). Positive psychology, positive prevention and positive therapy. In: Snyder, C. & Lopez, S. (Eds). Handbook of positive psychology (8–76). New York: Oxford University Press. Seligman, M. & Csikszentmihalyi, M. (2000). Positive psychology – an introduction. American Psychologist 55: 5–14. Shonkoff, J., Hauser-Cram, P., Wyngaarden Krauss, M. & Upshur, C. (1992). Development of infants with disabilities and their families: implications for theory and service delivery. Monographs of the Society for Research in Child Development 57. Shonkoff, J. & Phillips, D. (2000) (Eds). From neurons to neighborhoods. Washington DC: National Academy Press. Sigman, M. & Ruskin, E. (1999). Continuity and changes in the social competence of children with autism, down syndrome, and developmental delays. Monographs of the Society for Research in Child Development 64: 1, serial no. 256. Skinner, E., Zimmer-Gembeck, & M. & Connell, J. (1998). Individual differences and the development of individual control. Monographs of the Society for Research in Child Development, 63, v–220. Snyder, C. & Lopez, S. (Eds) (2002). Handbook of positive psychology. New York: Oxford University Press. Stattin, H. & Magnusson, D. (1996). Antisocial development: a holistic approach. Development and Psychopathology 8: 617–645. Stuhr, U. & Wacholz, S. (2001). In search for a psychoanalytic qualitative strategy: the concept of ideal types. In: Frommer, J. & Rennie, D.L. (Eds). Qualitative psychotherapy research – methods and methodology. Lengerich: Pabts Science Publishers. Super, C. & Harkness, S. (1999). The environment as culture in developmental research. In: Friedman, S. & Wachs, T. (Eds). Measuring environments across the life span. Washington DC: American Psychological Association. Söder, M. (1992). Normalisering og integrering; Omsorgsideologier i et samfunn i endring [Care ideologies in a society undergoing change]. In: Sandvin, J.T. (Ed.) Mot normalt. Omsorgsideologier i ändring. [Care ideologies in a state of change]. Oslo: Kommuneforlaget. Von Bertalanffy, L. (1968). General systems theory. London: Penguin Books. © The authors and Studentlitteratur

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Wachs, T. (2000). Necessary but not sufficient. Washington DC: American Psychological Association. WHO – World Health Organisation (2001). International Classification of Functioning, Disability and Health (ICF). Geneva, World Health Organisation.

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18 Nordic disability research: reflections, not conclusions

18 Nordic disability research: reflections, not conclusions Tom Shakespeare

On behalf of readers and researchers from the international disability studies community, it is a privilege to welcome this volume which introduces contemporary Nordic disability research to a wider audience and also salutes the important contribution of Mårten Söder to our field. Both tasks are overdue. In the current collection of essays it is possible to see emulated important aspects of Söder’s own work: the breadth of topics under consideration; an exploration both of conceptual issues and of qualitative research evidence; a willingness to ask difficult questions and challenge taken-for-granted assumptions; a challenge to injustice. Söder has been described as the scholar with the best overview of disability research in the Nordic countries, so it is fitting that his Festschrift offers such a useful introduction to this work. In this chapter, I will reflect on my own experience of disability studies in the UK context, before looking at what the current collection demonstrates about the differences in Nordic disability research, and concluding with some comments about the future development of the field. British disability studies emerged from the social movement of disabled people, which became politically active in the late 1960s and 1970s. Whereas non-disabled researchers had been exploring the disability problem for some years – particularly through the disciplines of social policy and medical sociology – the new approach was characterised by the central role of disabled people themselves. As Michael Oliver (1996) and others have suggested, disabled activists and scholars can be described as “organic intellectuals”, committed to a revolutionary struggle to change the relations of disability and challenge the social exclusion of disabled people. © The authors and Studentlitteratur

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Part of this move was to establish a Year Zero, coinciding with the formation of the seminal Union of Physically Impaired Against Segregation (UPIAS), and marked ideologically by the invention of the British social model of disability, which found its way into print via UPIAS’ Fundamental Principles of Disability (1976), and was summarised as follows: In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society.

For the first time in Britain, disabled people themselves were meeting together to understand their oppression, replacing a “deficit model” of disability with a “barriers model”: people with impairment were disabled by society, not by their bodies. This political move reflected and inspired the growth of a liberation movement of disabled people, and generated a new form of politicised disability research. The power of these ideas enabled the growth of a strong movement of disabled people, armed with an ideological critique of professional dominance, institutional living, environmental exclusion and medicalisation. Direct action against inaccessible transport and patronising images, the growth of disability arts, the emergence of direct payments and personal assistance schemes, all can be attributed to the vigour of the disabled-led movement for social change, a movement in which social research was seen as the servant of political struggle (Campbell & Oliver, 1996). At the core of this new approach to disability was the tendency to promote dichotomies which both polarised the world of disability and enabled clear political judgements and actions. For example: disabled people versus non-disabled people; emancipatory research versus traditional research; social model versus medical model; barriers approaches versus deficit approaches; activism versus academia; disability versus impairment; social change versus medicine; rights versus charity; independent living versus care. Several decades later, the British disability movement itself is in turmoil, possibly even decline, and academic disability studies in the UK also lacks leadership and direction. With the achievement 296



of disability discrimination legislation, and the widespread acceptance of independent living principles (in theory, if not always in practice), it is less clear where the priorities for research and campaigning lie. The stubborn persistence of disability disadvantage suggests that a more complex analysis may be required. Meanwhile, other forms of disability research, for example the chronic illness tradition exemplified by Michael Bury and Gareth Williams, or the social policy work of Peter Townsend and successors, has largely been disowned by the social movement of disabled people. A community of non-disabled researchers continues to work in the field of learning difficulties (the UK term for intellectual disability), but it is not always clear whether this research is seen, or sees itself, as part of the disability studies community. The British social model was developed by and for people with physical impairments, and it is not straightforward to apply it to issues such as intellectual disability and mental health (Chappell, 1998). Many disability activists, and some dominant voices in disability studies, resist the suggestion that more nuanced and careful theoretical work is required, or that founding concepts (such as the social model) need to be revisited. When I recently reviewed a stack of newly published UK disability studies collections for Sociology of Health and Illness (Shakespeare, 2005), the lack of strong empirical studies was obvious. Why, despite the 30 years which have elapsed since the social model was developed, has it not generated a richer field of social research? One reason is the slow emergence of disabled people trained in social research methods. Another may be that non-disabled researchers have been scared off doing disability research by the politicisation of the field and the occasional hostility towards non-disabled researchers by activists. This is regrettable. Some of the best research on disability has been conducted by nondisabled people. It is vital for disabled researchers to be active in disability research, and non-disabled academics need to do more to enable disabled people to enter academia, but the best way forward must be alliances between disabled and non-disabled researchers to promote good quality work by and between both groups. But a third reason is the difficulty of operationalising the social model concept in qualitative or quantitative studies. For example, as soon as research engages with the complexity of the lived experience of disability, the polar dichotomy between “impairment” and © The authors and Studentlitteratur

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“disability” breaks down, and identifying as disabled becomes a more questionable goal (Watson, 2002). Yet when researchers tell more nuanced and complex stories, based on the testimonies of ordinary disabled people, they risk rejection by the activist community. Looking overseas for intellectual companionship, the British disability researcher finds that contemporary disability studies in North America is now largely dominated by the humanities. While such studies offer fascinating material about cultural representations of disability, particularly in a historical and literary context (e.g. Davis, 2002; Michalko, 2002), they offer scant resources for those motivated to challenge the contemporary social disadvantage of disabled people. However, it is reassuring to note that neither North American nor Australian (e.g. Goggins & Newell, 2004) disability studies seem to be marked by the same dichotomising ideologies or endless arguments about models and terminology as British disability studies. Finding the wealth of Nordic disability research adds new pieces to the jigsaw. For more than 30 years, a community of scholars – mainly non-disabled, but often with personal experience of disability – has developed work, much of which is both politically engaged and intellectually rich. As the very useful introduction to this volume suggests, Nordic accounts have to be situated in the history of the extensive welfare states which have characterised these countries since the 1930s. Other relevant features are the comparatively late transition to modern industrial urban society, and a strong social commitment to equality and inclusion. This book offers a snapshot of contemporary Nordic research, rather than a representative sample. But generalising from the particular, it is possible to draw some tentative conclusions about the state of the field. There is good empirical research on disability being conducted in Nordic countries, and none of the UK tendency to subordinate research to ideology and foster simplistic dichotomies. Nordic scholars, in particular Söder, seem to have steered a largely successful course between the Scylla of individual essentialism and the Charybdis of contextual essentialism, creating relational accounts which have space for the interaction of personal characteristics and social processes and environments. For example, Kristiansen’s discussion of mental illness shows how disease itself 298



impacts and destabilises, as well as highlighting the way professionals can make a difference, while challenging fatalistic discourses which do not allow for recovery. This Nordic relational approach, at its best, seems to me entirely sensible, and more adequate to the complexities of the disability problem than the more ideological British social model which denies difference and sees oppression in every encounter. Nordic disability research seems dominated by concern with the operation of the welfare state – schools, disability pensions, residential schemes and social support – as so many of these chapters show. In other parts of the world, the struggle is to achieve the services and living situations which disabled people need: in Scandinavia, the struggle seems more to develop and adapt the services fully to realise the goals of inclusion and support. At its best, this aspect of Nordic research has political benefits at the micro as well as the macro level. As well as informing policy, such empirical and analytical work may encourage professionals and carers and service providers to be reflective about their own behaviour and treatment of people with learning difficulties and people with mental illness, raising awareness of problematic aspects of services and unintended consequences. While Foucault is rarely cited in these studies, these explorations of power and governance and surveillance are reminiscent of his own concerns. However, the focus on evaluation and criticism of operations of the welfare state and of professionals does offer a somewhat “top down” approach. In general, these accounts have a limited amount to tell us about what disabled people themselves think, say and do. However, several of these authors offer sensitive and moving accounts by proxy, for example, Ytterhus’ exploration of Elin’s challenge to her exclusion as a person with Down’s syndrome, or Kirkebæk’s discussion of the eugenic incarceration of Else Helene Antonsen, or the emergence of mothers with learning difficulties within the life histories of their children. Enabling the voice of disabled people to be heard must remain an important priority of disability studies. Whereas a comparable British collection would undoubtedly include chapters from the identity politics perspective, here political activism is mainly limited to the ethnographic discussion of Deaf worlds. Moreover, with a couple of exceptions, most of the © The authors and Studentlitteratur

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book concerns people with intellectual disabilities – whom in Britain we would call people with learning difficulties. In Britain, conflict and activism has been ongoing for 30 years, as disabled people have struggled for their rights within a welfare state which has been less supportive and generous than those in Nordic countries: the upshot is a cohort of empowered and professional physically impaired people, speaking for themselves and expecting to be included in every area of life, including academia. Contributors to this collection come from a wide range of disciplines – special education, psychology, social work, politics, sociology and anthropology – although not the humanities. Yet the predominant concerns of this research are state services and the role of professionals. Important themes of recent research in Britain, Australia and North America – for example cultural and media representation, access to employment, bioethical controversies around genetics and assisted suicide – are all absent from this collection. Looking at the future, it is clear that international collaboration provides a way forward for the community of disability studies scholars, so that each tradition can learn from the strengths of the others. In Britain, national disability studies conferences were held in 2003 and 2004 at Lancaster University, and the intention is to hold further conferences bi-annually. The Nordic Network on Disability Research is now also meeting in alternate years. This offers the chance for researchers from the Nordic countries to come to Britain to join our deliberations, and vice versa. Meanwhile, the Society for Disability Studies in the USA has a tradition of regular annual meetings, and there are emerging disability studies communities in Australia and the Majority world, some of whom contribute to European and North American events. Understanding the differences between countries in terms of disabled people’s experiences and the cultural meaning of disability will become increasingly important. Developing connections to the social movements of disabled peoples is a priority. The disability rights principle of “nothing about us without us” is vital. An engagement with, and attentiveness to, the struggles of disabled people for social inclusion, voice, self-determination and better quality of life marks out disability studies wherever it is found in the world. While other areas of social 300



science have been dominated by abstract conceptual debates, most research on disability has remained accessible and practical and committed to social change. Yet engagement with lived experience and struggles for change does not mean subjecting research to ideological constraints. There is a danger of research reproducing our existing knowledge and assumptions, rather than challenging us to think again and anew. Disability is one of the most complex phenomena in the whole of social research, and our methodologies and conceptualisations need to be adequate to this complexity. We need to start by asking the right questions, rather than assuming that we know what we are going to find in the field. Mårten Söder has a habit of asking the difficult and important questions. He has contributed directly to the disability studies project, and has supported and influenced the work of many other researchers, including the contributors to this volume, in ways which are seldom fully acknowledged. Progress in inclusion and equality may sometimes feel frustratingly slow, but engaged social research with, by and for disabled people will continue to play an important role in years to come, as this collection demonstrates.

References Campbell, J. & Oliver, M. (1996). Disability politics. London: Routledge. Chappell, A. L. (1998). Still out in the cold: people with learning difficulties and the social model of disability. In: Shakespeare, T. (Ed.). The disability reader: social science perspectives. London: Cassell. Davis, L.J. (2002). Bending over backwards: disability, dismodernism and other difficult positions. New York: New York University Press. Goggins, G. & Newell, C. (2004). Disability in Australia: exposing a social apartheid. Sydney: University of New South Wales Press. Michalko, R. (2002). The difference that disability makes. Philadelphia: Temple University Press. Oliver, M. (1996). Understanding disability. Basingstoke: Macmillan. Shakespeare, T. (2005). Disability studies today and tomorrow. Sociology of Health and Illness 27, 1. © The authors and Studentlitteratur

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Union of Physically Impaired Against Segregation (1976). Fundamental principles of disability, available at: <www.leeds.ac.uk/disability-studies/archiveuk/archframe.htm> Watson, N. (2002). Well, I know this is going to sound very strange to you, but I don’t see myself as a disabled person: identity and disability. Disability and Society 17, 5: 509–528.

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