Overcoming Disabling Barriers: 18 Years Of Disability And Society (Education Heritage Series)

Overcoming Disabling Barriers

This book provides a valuable route map to the development of thinking in disability studies over the last 18 years. It includes over 20 seminal articles from the journal Disability and Society, written by many of the leading authors in the field from the UK, the USA, Australia and Europe. Compiled by the current Executive Editors of the journal to show the development of the field, the book is divided into three sections which mirror the three central themes: •

• •

Disability Studies – the articles in this section illustrate clearly the debates and challenges that have emerged within the field over the last two decades. Policy – this section offers a snapshot of social policy that has impinged on the lives of disabled people in many parts of the world. Research Issues – this section brings together articles that reveal the inequalities between disabled and non-disabled people and the advocacy of new methods and research practices.

The Executive Editors’ specially written introduction to each section contextualises the selection and introduces students to the main issues and current thinking in the field. This book is a rich source of ideas and insights covering conceptual, theoretical, empirical and cross-cultural issues and questions. It also provides a valuable historical and contemporary lens through which the issue of disability can be explored and understood. It aims to encourage further debate, innovatory ideas and applied outcomes as well as a stimulus to encourage the reader to explore other articles that have been published in the journal. This volume is from the Education Heritage series. For details of other titles in this series, please go to the website at www.routledge.com/education. Len Barton is Professor of Inclusive Education at the Institute of Education, University of London. He is Editor of British Journal of Sociology of Education and Disability and Society and a member of the Executive Editors of International Studies in the Sociology of Education.

Education heritage series

From Adult Education to the Learning Society 21 years from the International Journal of Lifelong Education Peter Jarvis A Feminist Critique of Education Christine Skelton and Becky Francis Overcoming Disabling Barriers 18 years of Disability and Society Len Barton Tracing Education Policy Selections from the Oxford Review of Education David Phillips and Geoffrey Walford Making Curriculum Strange Essays from the Journal of Curriculum Studies Ian Westbury and Geoff Milburn

Overcoming Disabling Barriers 18 years of Disability and Society

Edited by Len Barton

First published 2006 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN Simultaneously published in the USA and Canada by Routledge 270 Madison Ave, New York, NY 10016 Routledge is an imprint of the Taylor & Francis Group © 2006 Routledge

This edition published in the Taylor & Francis e-Library, 2006. “To purchase your own copy of this or any of Taylor & Francis or Routledge’s collection of thousands of eBooks please go to www.eBookstore.tandf.co.uk.” All rights reserved. No part of this book may be reprinted or reproduced or utilized in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging in Publication Data A catalog record for this book has been requested ISBN 0–415–37875–3

Contents

General introduction

viii

LEN BARTON

PART I

Disability studies Introduction

1 3

COLIN BARNES AND CAROL THOMAS

1 Social policy and disability: some theoretical issues

7

MIKE OLIVER

2 The concept of oppression and the development of a social theory of disability

21

PAUL ABBERLEY

3 Women with disabilities: two handicaps plus

37

WILLIAM JOHN HANNA AND BETSY ROGOVSKY

4 Disabled people’s self-organisation: a new social movement?

53

TOM SHAKESPEARE

5 Eugenics and disability discrimination

70

DAVID PFEIFFER

6 The social model of disability and the disappearing body: towards a sociology of impairment

91

BILL HUGHES AND KEVIN PATERSON

7 Differences, conflations and foundations: the limits to ‘accurate’ theoretical representation of disabled people’s experiences? MAIRIAN CORKER

108

vi

Contents

8 Is there a disability culture? A syncretisation of three possible world views

125

SUSAN PETERS

PART II

Policy Introduction

145 147

SALLY FRENCH AND JOHN SWAIN

9 Personal trouble or public issue? Towards a model of policy for people with physical and mental disabilities

151

ANNE BORSAY

10 Disability and Afghan reconstruction: some policy issues

169

M. MILES

11 Disabled people, service users, user involvement and representation

181

PETER BERESFORD AND JANE CAMPBELL

12 Disabled people in a newly industrialising economy: opportunities and challenges in Malaysia

193

DENISON JAYASOORIA, BATHMAVATHI KRISHNAN AND GODFREY OOI

13 The disability rights movement in Japan: past, present and future

202

REIKO HAYASHI AND MASAKO OKUHIRA

14 What disability civil rights cannot do: employment and political economy

218

MARTA RUSSELL

PART III

Research issues

239

Introduction

241

MICHELE MOORE AND LEN BARTON

15 Listening to disabled people: the problem of voice and authority in Robert B. Edgerton’s The Cloak of Competence DAVID A. GERBER

244

Contents vii 16 Changing the social relations of research production?

267

MIKE OLIVER

17 Personal and political: a feminist perspective on researching physical disability

283

JENNY MORRIS

18 Race and disability: just a double oppression?

294

O.W. STUART

19 Disability studies as ethnographic research and text: research strategies and roles for promoting social change?

307

JOHN M. DAVIS

20 Normalisation, emancipatory research and inclusive research in learning disability

325

JAN WALMSLEY

21 What a difference a decade makes: reflections on doing ‘emancipatory’ disability research

346

COLIN BARNES

Index

362

General introduction

The publisher, Taylor and Francis, wrote to inform me that Disability and Society had been chosen as one of the journals from which they would like to publish a special edited volume of selected articles. This would be a means of acknowledging and celebrating the position and influence of the Journal. Having to select articles to include in the book has been an extremely difficult task. We could not please all the interested parties, nor did we want to give the impression that those not included have not made valuable contributions. We believe that they have. The process of selection was taken very seriously. Each of the executive editors looked through the published articles around three chosen themes. We did have considerable initial agreement about the choice of many of the articles. We then came together and agreed the final selection. We have included the articles in this volume in chronological order of publication in each section. Each theme then has a brief introduction by two of the executive editors. A major outcome of our examination of the published articles has been our unanimous agreement about the shear wealth of insights, ideas, questions and topics that make the journal such a wonderful resource, especially for students involved in the pursuit of knowledge and understanding with regard to the issue of disability. When starting the journal, the intention was to provide a forum in which discussion could be encouraged, and innovatory ideas concerning, for example, policy, research and cross-cultural understanding could be developed. We believe the articles in this volume exemplify that critical engagement and, also, provide a stimulus for exploring the benefits that can be derived from other publications in the journal. We are grateful to all the authors who have submitted articles to the journal and to the editorial board for the quality of their refereeing that has enabled the journal to achieve such a significant position in the field of disability studies. Val Stokes and Helen Oliver have provided such high-quality administrative support which has enabled the process of publication to be an efficient and effective experience. Also, our thanks to the publishers who have offered a consistent and very helpful support at all times in the life of the journal. Finally, it is essential that these articles, many written by disabled people, are

General introduction ix not viewed as the final authoritative statement on the issues they address. Rather, they are to be seen as a source of critical, innovatory and thoughtprovoking insights and understanding. They represent a significant resource that we need to examine as we seek to further explore these fundamentally important issues. Len Barton Editor

Part I

Disability studies

Introduction Colin Barnes and Carol Thomas

Before the 1980s academic interest in disability was characterized by conventional individualistic medical explanations, and dominated by medicine and related professional interests. Social scientists concerned with this increasingly important area of enquiry tended to follow similar paths. While some writers recognized the significance of economic, social and cultural factors in the production of disability, the causes of the various deprivations and disadvantages experienced by disabled people were still largely located at the individual level. The challenge to this orthodoxy came not from within the academy but from disabled people themselves. Although the origins of political activism amongst people with accredited impairments can be traced back to the nineteenth century (Campbell and Oliver 1996: Longmore and Umansky 2000) it escalated significantly during the 1960s and 1970s. Inspired by the political and social upheavals of the period, disabled people began to organize collectively in increasingly large numbers to protest against their incarceration in residential institutions, their poverty and the discrimination they encountered. Notable early examples include the American Independent Living Movement and the Swedish Self Advocacy Movement as well as the formation of The Disablement Income Group (DIG) and the Union of the Physically Impaired Against Segregation (UPIAS) in Britain (Campbell and Oliver 1996). The British experience is especially important as it generated a radical and controversial new socio/political approach to theory and practice generally referred to as the social model of disability. The activities of grass-roots organizations controlled and run by disabled people such as the UPIAS and the Liberation Network of People with Disabilities were especially important in this development. The social model is founded on the re-definition of disability by the UPIAS in 1974, and was conceived as an aid to understanding, or a heuristic device, rather than as a fully constituted social theory of disability (Oliver 2004). The activities and writings of these organizations and their members provided the fertile ground upon which disabled and non-disabled scholars could explore and reconfigure the whole notion of disability and the social process of disablement. This opened the way for academically fashioned writings in a new discipline, disability studies. The first academic course devoted exclusively to the experience

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of disablement, entitled ‘The Handicapped Person in the Community’ in the UK, was initiated by an interdisciplinary team at the Open University (OU) in 1975. A major figure in the development of this course was Vic Finkelstein, a disabled South African activist and writer, and founder member of UPIAS. Later in the 1970s, similar courses began to appear in American and Canadian universities, although most were firmly rooted in medical sociology and traditional approaches to disability. A disabled medical sociologist, Irving K. Zola, established the American Disability Studies Quarterly, and the Society for Disability Studies in 1981. The phrase ‘disability studies’ entered the academic vocabulary in the UK in 1992 following its adoption for a range of courses covering this subject area in the School of Sociology and Social Policy at the University of Leeds (Barnes 2003). However, apart from the OU course mentioned above, academic interest in the UK rarely moved beyond traditional medical or psychological approaches until the establishment in 1986 of the international journal, Disability, Handicap and Society, renamed Disability and Society in 1993, by Mike Oliver and Len Barton. Drawing inspiration from the writings of disabled people and their organizations, the journal has, from the outset, focused exclusively on the socio/political/cultural dynamics of the complex process of disablement. In doing so it has provided a, if not, the major catalyst for the establishment of disability studies as a legitimate area of scholarly enquiry at both national and international levels. Early articles, selected for inclusion in this collection, by Mike Oliver (1986) and Paul Abberley (1987) effectively reflect these developments. In so doing they formulated an appropriate theoretical foundation for understanding disability as a complex and sophisticated form of social oppression that emphasises the link between disability theory and politics. This social interpretation of disability argued that people with accredited or perceived impairments, regardless of cause, are disabled by society’s failure to accommodate their needs. The year 1990 witnessed the publication of Mike Oliver’s The Politics of Disablement, a book that provided the first comprehensive theorization of the socio/political interpretation of disability. Drawing on a variety of influences, including personal experience, the writings of disabled people such as Vic Finkelstein (1980) and Paul Hunt (1966), and the sociological insights of Karl Marx, August Comte and Antonio Gramsci, amongst others, it provided a thorough and rigorous theoretical exploration of the materialist and ideological foundations upon which contemporary responses to disability are based. It has had a considerable influence on disability thinking both within and without universities and colleges across the world. It set an agenda that has stimulated much of the theoretical debate that has subsequently been explored in Disability & Society. These developments generated a host of new questions and dialogues about the relevance of disability theory, politics and practice. The articles that follow are illustrative of some of the important themes that have emerged. The interplay between disability and gender is a particular case in point. For example, do

Introduction 5 women experience, in William Hanna and Betsy Rogovsky’s (1991) terms, ‘two handicaps plus’? Tom Shakespeare (1993) tackled a different theme in his discussion of social movement theory and disabled people’s self-organization. The paper by David Pfeiffer (1994) links disabled people’s oppression to the prevalence of eugenic ideas in western culture. These and the other articles reflect the emerging and rapidly developing nature of disability studies in recent years. They chart the transition from a relatively straightforward demand by disabled activists for a shift in emphasis away from the individual onto the structural and cultural forces that shape disabled people’s lives, thus generating an increasingly complex body of knowledge. Inevitably, with this complexity of ideas came a rich mix of disagreement, debate and innovation. A recurrent concern is the assumed neglect of the experience of impairment and ‘the body’ by advocates of social model inspired theorizing. Bill Hughes and Kevin Paterson’s (1997) article on the ‘disappearing body’ and the need for a sociology of impairment is one example. These and other authors’ engagement with phenomenology, psychodynamic and poststructuralist ideas is also illustrative of the growing interest among some 1990s writers in supporting a ‘cultural turn’ in disability studies. The materialist ideas advanced by Mike Oliver and others are seen by postmodernist and poststructuralist thinkers, most notably Mairian Corker (1999) (a.k.a Mairian Scott Hill), whose paper is featured here, as inadequate to the task of theorising ‘difference’ – whether associated with gender, ‘race’, sexuality or impairment. Social constructionist theories that privilege cultural and linguistic phenomena are believed by their proponents to offer more relevant conceptual frameworks. In response, defenders of materialist accounts have argued that this and related approaches do not deny the significance of impairment and ‘difference’ in disabled people’s lives, but concentrate instead on the various barriers – economic, political and social – constructed on top of impairment. It will be evident that several of the papers in this section are written by British-based academics, many of whom are disabled themselves. This reflects the significance of the interface between personal experience, social model inspired thinking and the disability studies agenda. The inclusion of Susan Peters’ (2000) paper which poses the question, ‘Is there a Disability Culture?’, is an important reminder that scholars from other parts of the world have made significant contributions to the contours of a disability studies curriculum. This is further reflected in the recent work by a small but increasingly influential band of predominantly disabled writers from North America, Australasia and the Nordic countries, many of whom are based in the humanities and cultural studies disciplines. These initiatives provide increasingly common ground between academics and researchers in the disability studies field. This has, in turn, rightly stimulated further lively debates about the best ways forward for the future development of disability studies, and its relations with the disabled people movement and disabled people generally. Taken together these articles illustrate clearly the various debates and

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challenges that have emerged within disability studies over the last two decades and the significance of the role that the journal Disability and Society has played in that process. They provide an invaluable introduction to this increasingly important area of enquiry and research.

References Barnes, C. (2003) ‘Disability studies: what’s the point?’. Keynote Address: Disability Studies Conference, University of Lancaster, Lancaster (3 September). Campbell, J. and Oliver, M. (1996) Disability Politics: Understanding Our Past, Changing Our Future. London: Routledge. Finkelstein, V. (1980) Attitudes and Disabled People. New York: World Rehabilitation Fund. Hunt, P. (ed.) (1966) Stigma: the Experience of Disability, London: Geoffrey Chapman. Longmore, P. and Umansky, L. (2000). The New Disability History: American Perspectives, New York: New York University Press. Oliver, M. (2004) ‘If I had a hammer: the Social model in action’, in J. Swain, S. French, C. Barnes, and C. Thomas (eds) Disabling Barriers – Enabling Environments, London: Sage. (Also available at: www.leeds.ac.uk/disability-studies/archiveuk/index)

Disability studies articles Abberley, P. (1987) ‘The concept of oppression and the development of a social theory of disability’, Disability, Handicap and Society 2, 1, 5–20. Corker, M. (1999) ‘Differences, conflations and foundations: the limits to “accurate” theoretical representation of disabled people’s experience’?, Disability and Society 14, 5, 627–642. Hanna, W.J. and Rogovsky, B. (1991) ‘Women with disabilities: two handicaps plus’, Disability, Handicap and Society 6, 1, 49–67. Hughes, B. and Paterson, K. (1997) ‘The social model of disability and the disappearing body: towards a sociology of impairment’, Disability and Society 12, 3, 325–340. Oliver, M. (1986) ‘Social policy and disability’: Some theoretical issues, Disability, Handicap and Society 1, 1, 5–17. Peters, S. (2000) ‘Is there a disability culture? A syncretisation of three possible world views’, Disability and Society 15, 4, 583–601. Shakespeare, T. (1993) ‘Disabled people’s self-organisation: a new social movement?’, Disability and Society 8, 3, 249–264.

1

Social policy and disability Some theoretical issues Mike Oliver Faculty of Education and Community Studies, Thames Polytechnic

Abstract This paper suggests that current ways of thinking about disability are inadequate, both theoretically and as a basis for social policy. The main reason for this is that most writers have remained locked within a ‘personal tragedy theory of disability’ and have failed to examine the concept of disability critically. Even those writers who have attempted to take disability seriously have failed to move beyond a traditional framework and have subsequently produced sterile accounts. The final section of the paper begins to suggest what a social theory of disability might look like.

A historical overview Since the late 1960s academics interested in the study of social policy have been forced to look more closely at the values and ideologies underpinning their work. One aspect of this has been the rapid rise and expansion of sociology as an academic discipline with the consequent proliferation of a variety of theoretical perspectives. Another aspect of this has been the gradually developing economic crises which have forced all governments in recent years to cut back on the rate of state spending on welfare. A final aspect has been the move away from a political consensus about the welfare state towards a polarisation of left and right wing positions concerning its nature, functions and future. However this situation is viewed, one thing is clear and that is, that as a consequence, the discipline of social policy has developed a theoretical sophistication and conceptual richness not found up to now. The extent of this is well summarised by recent commentators (Loney, Boswell & Clarke, 1983: 6). Although much of this new analysis of social policy reflected the rehabilitation of Marxist theory in British academic life (e.g. Gough, 1978; Ginsberg, 1979; Taylor-Gooby & Dale, 1980) as well as the development of feminism (e.g. Wilson, 1977), such theories were by no means the only contenders. Economic liberalism and its privileging of the market had its intellectual voices, too. The Institute of Economic Affairs—for a long time cast as a voice in the wilderness—became more central with the increasing salience

8

Mike Oliver of monetarism. . . . In a different way, the social-democratic themes of decentralization and local participation have been reflected in social policy writings about neighbourhood and community based social provision (e.g. Hadley & Hatch, 1981).

Thus a number of issues such as health, education and income maintenance have been discussed from a number of different perspectives, and the status of groups like women and ethnic minorities have been considered within alternative theoretical frameworks. Unfortunately neither disability, as opposed to illness, as an issue nor disabled people as a group have received such consideration. The major reason why disability has been largely ignored in the recent writings on social policy is undoubtedly that most writers have seen disability as a non-problematic category for analytical purposes. That is to say, they have accepted the general view of disability as a personal tragedy. From this it logically follows that the reasons why disabled people cannot or do not participate fully in society stem directly from the physical or psychological limitations of the disabled person as a consequence of this traumatic event, whether it be an accident or the onset of some progressive disease. However, more and more disabled people have been pointing out that full participation has not been prevented by personal limitations but by the social restrictions imposed upon them by society leading them to the view that (UPIAS, 1976: 4): “. . . disability is therefore a particular form of social oppression”. Elsewhere (Oliver, 1983), I have referred to these different views as the ‘individual’ and ‘social’ models but they might perhaps more emotively be called ‘personal tragedy theory’ and ‘social oppression theory’. Regardless of terminology, it is true to say that able-bodied academics have worked almost exclusively within the first perspective while disabled people have sought to actively promote the second. Even when disabled people are discussed by academics, it is often in a very superficial way. Gough, for example, has little trouble in fitting disabled people into Marx’s industrial reserve army (Gough, 1979: 25). The industrial reserve army consists of not only the unemployed but also marginal groups like the disabled, the seasonally unemployed, those displaced from previous modes of production (like peasants), immigrants from other countries and, especially important today, housewives. Leaving aside doubts about its conceptual accuracy, there are grave doubts about this statement’s factual accuracy as well. To begin with, following official definition of disability (Harris, 1971), more than two thirds of the disabled population are over 65 and hence above working age. In addition, of those between 16–65 it has been estimated that between 25–30% are unemployed (Grover & Gladstone, 1981), meaning that a considerable majority of disabled people of working age are part of the labour force.

Social policy and disability 9 Finch (1984), in an otherwise sensitive article on the implications of community care for women, fails to see the conceptualisation of disability, or rather dependency based upon disability as in any way problematic. Hence, her conclusions, that as residential care is marginally less oppressive to women than community care, we should have more of the former and less of the latter. This argument is based on the false assumption that the population can be divided up into dependent (disabled) and independent (able-bodied) people whereas in reality, no-one in modern industrial society can claim to be independent. Within most caring relationships there may then be a ‘reciprocity of dependency’ whether based on current performance of tasks or the re-allocation of roles based upon a reversal of previous relationships (i.e. children now caring for parents who previously cared for them). Hence, because of the emotional bonds built up as a consequence of these caring relationships, it is unlikely that many of these carers would see more residential care as the solution to their oppression. Further, such a view fails to take into account the feelings of the dependant/disabled people who will be recipients of such policies, and many of whom see residential institutions as (UPIAS, 1984: 17), fundamentally oppressive because of their social purpose which is to facilitate the incarceration of certain social groups who are defined as being social problems. By failing to see disability itself as a problematic category Finch gets into the position where she advocates decreasing the oppression of one group by increasing the oppression of another. It would be wrong to conclude this section without referring to the work of two writers who have attempted to locate their work on disability within a theoretical framework. Topliss (1979: 7) thereby provides a broadly functionalist framework for her analysis of disability. The history of provision for the disabled members of society may be seen primarily as the development of recognition that certain needs of certain groups of the disabled are compatible with promoting or safeguarding the wider interests of society. The various provisions that have developed are then linked to this framework through the principle of economic rationality (Topliss, 1979: 9): Sympathy for the handicapped has been translated into effective legislation when, and in so far as, it could be shown that the provisions would in some way bring an economic return to compensate for the economic cost of the resources so committed. Townsend, on the other hand, has located his discussions of disability with what has been called (George & Wilding, 1976) the Fabian Socialist Approach.

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Thus, while recognising that many of the problems of disability stem from existing social and economic inequalities, he can only suggest the introduction of a National Disability Income and the reduction of existing inequalities as appropriate remedies. The adequacy or otherwise of these suggestions have been heatedly discussed elsewhere (UPIAS, 1975) so the next section will discuss in more detail recently published works in which these two social policy analysts have been closely involved. In addition an interesting attempt by an American political scientist (Stone, 1984) to discuss disability and social policy will also be considered.

Current writings The first book, A Charter for the Disabled was co-authored by Topliss, & Bryan Gould, himself a Member of Parliament though previously a university lecturer. The first part of the book by Topliss & Gould is a descriptive account of the inception and passage of the Chronically Sick and Disabled Persons’ Act through Parliament. It is written, as much political history is written, with an individual hero, Alf Morris, battling against wicked forces who want to constrain and emasculate his noble vision. On the side of the wicked forces were various government departments including the DHSS and the Treasury, and a variety of local government and professional organisations and associations (Jaehnig, 1974). On the positive side our noble hero had some help from various disability organisations, concerned professionals and disabled members of the House of Lords who as one writer (Goldsmith, 1976) once commented “show a remarkable propensity for falling off horses”. There are two problems with this descriptive account; it tells us little we did not already know and, more importantly, it fails to consider the role of economic and social forces which made some major legislative changes inevitable and not dependent upon some noble individual. Such legislative change was inevitable for a number of reasons. First, consistent economic growth since the mid-fifties had created sufficient economic wealth to make new policy initiatives certain. Secondly, as the combined result of medical advances and the changing age structure of the population, an ever increasing proportion of the population was becoming disabled. Thirdly, political pressure, notably through the Disablement Income Group but also other organisations was being exerted, by and on behalf of disabled people. Finally, the National Assistance Act 1948, which provided the legislative basis for current provision, was becoming outdated, had been affected by other legislation notably in the Health and Child Care fields, and in addition, the Seebohm Report and Local Authority reorganisation were themselves about to have a profound impact. It is clear that Central Government itself was preparing for some major legislative change in that it had commissioned its own National Survey (Harris, 1971) in order to attempt to ascertain an accurate picture of the numbers of disabled people in the population. The failure to go beyond the traditional descriptive account is reproduced in

Social policy and disability 11 the second half of the book which analyses the interpretation and implementation of the Chronically Sick and Disabled Persons’ Act. True it does raise some questions about why the issue of the participation of disabled people in the provision of services, called for in Sections 9–15 of the Act, have been ignored, and it also suggests that the Act itself constitutes a major acknowledgement of the social rights of disabled people, though on the somewhat dubious grounds that nobody has ever publicly challenged the provisions made in the Act. As Topliss herself puts it (Topliss & Gould, 1981: 142): Society may, in fact, have expended too little in the way of resources and effort to adjust the environment, as much as many would wish, to meet the needs of disabled people, but the acceptance of an obligation to move in this direction has never been challenged since the passing of the Act. The rest of the book is a detailed consideration of the needs of disabled people and some of the reasons why the Act has failed to deliver the goods and services it promised. Once again the approach is fairly traditional, seeing need as a nonproblematic category and suggesting that needs have not been met because of underestimates of demand, failure of Central Government to provide sufficient resources and so on. The need for residential care is examined in some depth and though current critiques are taken into consideration, the authors ultimately suggest that more residential resources are needed. However, beyond the anecdotal, very little evidence is produced for such need and the suggestions run completely counter to what disabled people perceive as their needs; that is to say, more services and resources provided in the community (Davis, 1981; Campling, 1981; Shearer, 1983; UPIAS, 1981, 1983). The major problem then, with the first book, is its failure to break with traditional frameworks for conceptualising and analysing disability. The collection of readings Disability in Britain edited by Walker & Townsend is also orthodox, but it is a newer orthodoxy belonging to the late 60s and 70s. As well as an introduction and conclusion by Alan Walker, which locates disability in present context, it contains a number of articles on different aspects of disability including income, employment and independent living, and also focusses on a number of different groups of people with disabilities, the elderly, children and their families, women and people with mental illnesses and mental handicaps. These papers remorselessly document many of the problems of living with a disability, but in policy terms they contain few, if any, recommendations or suggestions which are really new. Running throughout the book there is almost a blind faith in the rational approach to policy making in that it is assumed that once the problems are identified and evidence produced, the Government will then act. Further, in this case the assumption is that the Government will act by ultimately providing a national disability income for all disabled people as a right. The experience of the last 20 years generally, and the last five years in particular, would indicate that this blind faith is entirely unjustified and it is, therefore,

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necessary to develop new ideas and new ways of thinking about disability. One major example of this failure to develop new thinking concerns the unquestioning acceptance, particularly by Townsend and Walker, of functional definitions of disability and the limitations these impose on suggestions for the future. To begin with, such definitions, even if they attempt to take into account the limitations of social roles, nevertheless still focus on the problems of the disabled individual and do not attempt to develop research tools for measuring the disabling effects of the economic, social and physical environments. In addition, these functional definitions invariably fail to distinguish between disability brought about by trauma, disease or accident in early and middle years of life and disabilities resulting from the ageing process. As a consequence, policy provisions are envisaged as meeting the needs of ‘the disabled’ not recognising that the needs of each of the two groups may be very different. Thus, for example, those who become disabled in early life will undoubtedly need some form of disability income as of right, but those who may become functionally limited as a consequence of the normal ageing process, and it is after all everyone who grows old, need a comprehensive old age pension and not an inadequate one topped up by disability supplements which are subject to eligibility tests. As Brown (1984: 316) points out with regard to elderly disabled people: The introduction of disability-related benefits from 1970 onwards has been of some assistance, but they remain marginal groups within the main State schemes. Functional definitions do not take account of such fundamentally different needs and it is necessary therefore to develop new and more appropriate definitions which take fully into account the fact that disability is a social imposition and not a personal limitation. The paper by Shearer is the most important one in the book, not only because she goes beyond the ‘we know what’s best for you’ approach which characterises much of the rest of the papers, but also because she is much more critical of the Chronically Sick and Disabled Persons’ Act than are most others, including Topliss & Gould, for example. Shearer is not just critical of the Act’s failure to provide the promised services but also of its underlying philosophy (Walker & Townsend, 1981: 82–3): The goodwill behind the 1970 Act’s provision cannot be doubted. But the philosophy can, for what it does is to reinforce the notion that people who happen to have disabilities are people who are ‘helpless’, unable to choose for themselves the aids to opportunity they need. What this effectively does is to lock them into the service providers’ perception of what is good for them, and so limit rather than expand their areas of effective choice. The offer of a holiday at a time and in a place that suits the social service worker or local authority, rather than cash in hand to spend according to indi-

Social policy and disability 13 vidual preference, sits oddly with the rhetoric which asserts that people with disabilities should have greater access to the range of social choices than many of the rest of society take for granted. The substitution of kind for cash sits no less uneasily with aspirations to enhance the selfdetermination and dignity of people with disabilities, in a society where status and respect has too much to do with purchasing power. The potential public outcry against a paternalistic state which attempted to deliver, say, child benefit in the form of nappies, creams and baby foods, does not take much imagining. She thus suggests that the Act’s underlying philosophy is a step in the wrong direction and that what disabled people, in fact, need is more cash and strong anti-discrimination legislation to ensure that they can buy the kinds of services they need without discrimination. This call for anti-discrimination legislation has been picked up by a number of disabled people and their organisations, based largely upon the apparent success of such legislation for disabled people in the United States. However, those who are anxious to jump on this particular bandwagon would do well to read Gregory’s penetrating analysis of such legislation with regard to blacks and women in this country. She suggests that (Fine et al., 1979: 138): Adopting a similar approach, anti-discrimination legislation can be seen as a response to the demands of oppressed groups for the removal of historical barriers to the achievement of full equality. These claims are compatible with bourgeois notions of justice and economic efficiency. The state therefore assumes a conformative role, using the legislation to control those employers whose practices fall short of acceptable notions of equal opportunity, and to evolve institutional structures for channelling the conflicts. and realistically concludes (Fine et al., 1979: 150): At the same time, it is important to disperse the cloud of mystification surrounding the legislation, so that it is clearly recognised as part of the processes of containment. It is on the statute book in order to protect, not threaten, the fundamental structures of capitalist society, and therefore cannot by itself constitute the vehicle for achieving a non-racist, non-sexist society. While Shearer, and indeed Walker, recognise this they do not go beyond the call for disabled people to have their legal rights enforced. A third attempt to construct an adequate theoretical framework has recently been published and it is by an American political scientist, Deborah Stone. The basic argument of the book is that all societies function through the ‘distributive principle’ in that goods and services produced have to be allocated to the

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population as a whole. The major mechanism of distribution (and production) is work, but not everyone is able to work or is willing to do so. Thus, a distribution system based on need also exists and the ‘distributive dilemma’ centres on how to allocate goods and services based upon the very different principles of work or need. In modern industrial societies, disability then becomes an important boundary category through which people are allocated either to the work based or needs based system. Given this analysis, the disability category clearly cannot be ascribed to individuals on the basis of medical condition and clinical judgement, but rather disability must be seen as a socially constructed category. This is not to deny that the ‘medicalisation’ of disability has occurred in all modern industrial societies but rather to question its appropriateness (Stone, 1984: 140): The assignment of citizens into the work-based or need-based distributive systems is a highly political issue which is not readily resolved by the creation of formal administrative schedules or the delegation of decisions to the medical profession (or any other technical experts). Anyone who has attempted to set the attendance allowance or mobility allowance for themselves or others will understand the truth of this. That disability continues to be medicalised is testament to both the power of the medical profession and the continuing need of the State to restrict access to the disability category. Stone (p. 20) makes it quite clear that her ‘socially constructed’ view of disability is different from the ‘socially created’ view of disability which will be discussed in the next section. She does at least, show that she is aware of the socially created view and acknowledges its merits. That in itself is not insignificant when most books produced by able-bodied academics and researchers fail to acknowledge that such a view exists. The problem however in developing a social constructionist view in isolation is that it offers little in the way of a recipe for action. Thus, while The Disabled State furthers our understanding of disability as a distributive category within the welfare bureaucracies it does not provide us with guidelines as to how the ‘state of disability’ might be resolved in modern industrial societies. Unfortunately therefore none of these accounts offer much hope that the problems experienced by disabled people are likely to be resolved. Theoretically redundant and politically neutered is perhaps an appropriate description of them. A major factor giving rise to such a situation therefore, is the lack of any coherent and systematic understanding of the nature of disability in society. In short we do not, as yet, have a social theory of disability. Further social policy in general and even those writers who have paid specific attention to disability have not shaken off the shackles of ‘personal tragedy theory’. However, in the last few years, there has been an enormous growth in the consciousness and selfconfidence amongst disabled people, expressed both in terms of the creation and establishment of their own organisations and in attempts to construct their

Social policy and disability 15 own view of disability (Sutherland, 1981). One such attempt (Finkelstein, 1980) does offer the possibility of beginning to construct a social theory of disability and it is to this we turn in the following section.

Future accounts Any attempt to construct a social theory of disability cannot ignore either history or context, but as yet neither a history nor an anthropology of disability has been written. There is ample evidence, however (Maisel, 1953; Farb, 1975; Hanks & Hanks (1980) and see Oliver (1981) for fuller discussion) that an absolutist view of disability cannot be sustained, either in terms of the way disability is perceived or in the way society responds either informally or through organised social policy. This is not only true in historically or culturally very different societies but also as Scott (1970) has shown in the perception of and response to blindness in several modern industrial societies. In short the dominance of personal tragedy theory in modern Britain cannot be explained in terms of its universality. The important question for social policy then, is why are all social provisions organised on the assumption that disability is a personal tragedy? The answer to such a question can only be found by reference to the historical processes which have shaped the social construction of disability as a specific category in modern society. Finkelstein (1980, 1981) has begun to look at these historical processes and their relevance to an understanding of the category disability. He locates his account within a materialist framework and suggests an evolutionary model based on the level of economic development of particular societies. For Britain he sees this in terms of Phases 1, 2 and 3. Phase 1 roughly corresponds to Britain before the Industrial Revolution. Phase 2 corresponds to industrialisation in late nineteenth and twentieth centuries, when the focus of manufacture shifted from the home to the factory. This takes us up to the present day, and Phase 3 refers to the kind of society to which we are currently moving, though Finkelstein does not spell out the differences between Phases 2 and 3. The economic base in Phase 1, agriculture or small industry, did not preclude the great majority of disabled people from participating in the production process, and even where they could not participate fully, they were still able to make a contribution. In this era disabled people were regarded as individually unfortunate and not segregated from the rest of society. With the rise of the factory in Phase 2, many more disabled people were excluded from the production process for (Ryan & Thomas, 1980: 101): The speed of factory work, the enforced discipline, the time-keeping and the production norms – all these were a highly unfavourable change from the slower, more self-determined and flexible methods of work into which many handicapped people had been integrated.

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As a result of this, disabled people were regarded as a social problem and more and more were segregated in institutions and out of the mainstream of social life. The emergence of Phase 3, according to Finkelstein, will see the liberation of disabled people from the segregative practices of society largely as a consequence of the utilisation of new technologies and the working together of professionals and disabled people towards common goals. For Finkelstein, disability is a paradox involving the state of the individual (his impairment) and the state of society (the social restrictions imposed on an individual). By adopting a three stage historical perspective, he sees the paradox emerging in Phase 2. In Phase 1 disabled individuals formed part of a larger under-class (or lumpen-proletariat) but in Phase 2 they were separated from their class origins and became a special, segregated group, whereby the paradox emerged and disability came to be regarded both as individual impairment and social restriction. Phase 3, which is just beginning, sees the end of the paradox whereby disability is perceived solely as social restriction. As an ‘ideal-type’ this is an impressive construct. However, when one tries to graft onto it the facts of history, then its limited value becomes apparent. In discussing Phase 1, Finkelstein (1980) at least in the earlier version of his model quotes from an article about begging written in 1894. He then goes on to discuss the move to Phase 2 in terms of the creation of new productive technology, and large scale industry geared to able-bodied norms. The implication of this is that Phase 2 did not begin until the end of the nineteenth or the early twentieth centuries. Any economic and social history textbook will indicate that the Industrial Revolution began as early as 1750, and while he may be accurate in linking the rise of institutions of all kinds to new productive technology, this certainly occurred long before he implies. Further, he suggests that in Phase 1 disabled people were integrated into an under-class and separate treatment for this particular category did not occur until the transition to Phase 2. Again this is historically inaccurate, for Section 1 of the 1601 Poor Law Act makes explicit reference to providing special facilities for the lame, the infirm and the blind. Indeed, many hospitals, asylums and workhouses were providing segregated treatment for the handicapped in the eighteenth and nineteenth centuries, which would indicate that any kind of specialisation process was occurring in Phase 1 not Phase 2. Similarly, in Phase 2, Finkelstein suggests it was the rise of hospital based medicine in asylums and other institutions that facilitated the segregation of disabled people. It is equally plausible to suggest that the process, in fact, occurred the other way round: that as a result of the transition from feudalism to capitalism the possibilities of social unrest were created because of the break up of previously stable social relations. The rise in institutions of all kinds was an attempt to control the non-working population. It was within these institutions that different groups, the poor, the sick, the disabled, the mentally ill, idle and so on were held. These groups had only one thing in common, they were unable or unwilling to exchange their labour for wages inside the factory. The need to separate these groups produced new medical specialisms, not the

Social policy and disability 17 other way round as Finkelstein suggests. Disabled people became segregated, not because of the rise of the hospital based medicine and a number of new medical and paramedical specialisms but because of the need of society to control effectively disruptive elements in its population. Specialisation in the treatment (and control) of different groups was therefore a function of the ever increasing sophistication of social control techniques based on the need to render harmless more and more potential disruptives (Manning & Oliver, 1985). Finally, it seems that Finkelstein’s model over-simplifies, or over-romanticises, two particular aspects of the historical process. First, it suggests that prior to Phase 2 some kind of idealised community existed and disabled people, amongst other minority groups, were somehow treated more benignly than was the case under Phase 2. Again this cannot be substantiated by a reading of history of the treatment of minority groups, for it is becoming clear that historical conceptions of ‘community’ may well be ideological constructs. Secondly, his discussion of technology appears over-simplified and his discussion of the transition from Phase 2 to Phase 3 suggests that technology is the prime moving factor in this change. Again, little consideration is given to the harmful effects of technology, it is simply seen as a liberating force for disabled people. Yet technology can, and does, create many of the problems faced by disabled people (Illich, 1977). A considerable number of disabilities are caused through working in technologically based factories or plants (Krause, 1976; Doyal, 1980). Significant numbers of others are caused, or at least sustained, by technology in terms of it preserving the lives of severely handicapped young babies and at the other end of the spectrum, elderly people (OHE, 1977, 1979). Certainly a number of writers, from Illich onwards, have not conceived of technology as either a liberating or a neutral force. Further, even if technology is seen in optimistic terms, there is little guarantee that its benefits will be spread equally to all classes in society. In pointing to some of the inaccuracies and assumptions implicit in Finkelstein’s model it should be noted that this was not Finkelstein’s main project. Therefore, to be over critical is in a sense unfair, but nevertheless in order to adequately understand the nature of disability it is important that we analyse the historical processes leading to the present situation accurately. Finkelstein’s main point in the model, however, is to examine attitudes, and in particular the interface between attitudes of professionals and disabled people as they encounter each other in their professional and everyday lives. However, this relationship between what he calls helpers and the helped plays an important part in structuring the consciousness of individuals involved in the relationship (Finkelstein, 1980, 17): The existence of helpers/helped builds into this relationship normative assumptions. ‘If they had not lost something, they would not need help’ goes the logic, ‘and since it is us, the representatives of society doing the help, it is society which sets the norms for the problem solutions’.

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Unfortunately there is neither the time nor space to pursue this further, but instead just to note that, following this line of analysis, personal tragedy theory seems endemic to the helper/helped relationship as it is presently constituted. Finkelstein (1980) though, clearly favours social oppression theory as an explanation for the current circumstances of disabled people in that he argues that: Disability . . . is defined in terms of the special form of discrimination, or social oppression, that is faced by people who are in some way physically impaired. While agreeing that disability is a form of social oppression, it is difficult to see why it is special. Social relations under capitalism are characterised by oppression—one class oppresses the other—and disabled people are a part of the oppressed class. However, part of the problem in making such an obvious statement is that it is difficult to substantiate. With one or two exceptions (Townsend, 1979), studies of disability and class are almost non-existent and hence there is little or no data available to facilitate such studies. Further, as was pointed out earlier, there have been no attempts to provide a theoretical understanding of the links between disability and class as there have been with race and gender. This section then has examined critically one attempt to sketch out what a social theory of disability might look like. The production of such a theory, which would move beyond an understanding of disability as a personal tragedy, will clearly need more time, work and effort. The short-term reward will at least be to bring a conceptual richness to the study of disability and to move away from the sterility of much current work on the subject. In the long term, it may result in the development of more appropriate policies towards disabled people and consequently an improvement in the quality of life for all concerned.

Concluding comments It is not unreasonable to conclude from my previous arguments that a social theory of disability is a pre-requisite for any attempts to construct a social policy for disabled people that will be both relevant to their needs and which will improve the quality of their lives. Some suggestions about particular areas where just such a theory might prove useful can now therefore be noted. To begin with, one might ask questions about why so much time and space has been spent on attempts to define disability (Harris, 1971; WHO, 1980) whereas there has been no consideration of the concepts ‘able-bodiedness’ or ‘physical normality’ and leading from there, what is the relationship between these concepts and the needs of capitalist society for a particular kind of workforce at different periods of history? In addition, one might ask about the ideological implications of a National Disability Income and show why such a scheme is unobtainable because of the way it conflicts with capitalist values surrounding the notion of work. Finally, one might begin to ask why most social

Social policy and disability 19 provision up to now has tended to re-inforce the dependency of people with disabilities rather than made them more independent. Of course, this is not a comprehensive list but just part of a possible agenda for the future which might make the study of disability more rewarding for all concerned. A social theory of disability then, should be integrated into, rather than separated from existing social theories. It has to be remembered however, that personal tragedy theory itself has performed a particular ideological function of its own. Like deficit theory as an explanation of poor educational achievement, like sickness as an explanation of criminal behaviour, like character weakness as an explanation of poverty and unemployment, and like all other victimblaming theories (Ryan, 1971), personal tragedy theory has served to individualise the problems of disability and hence to leave social and economic structures untouched. Social science in general and social policy in particular have progressed far in rejecting individualistic theories and constructing a range of alternative social ones—let us hope that personal tragedy theory, the last in the line will soon disappear also, to be replaced by a much more adequate social (oppression) theory of disability.

Note An earlier version of this paper was given at the Social Administration Association 17th Annual Conference at the University of Kent, 11 July 1984.

References Brown, J. (1984) The Disability Income System (London, Policy Studies Institute). Doyal, L. (1979) The Political Economy of Health (London, Pluto Press). Farb, P. (1975) Word Play: what happens when people talk (New York, Barton). Finch, J. (1984) Community care: developing non-sexist alternatives, Critical Social Policy, No. 9. Finkelstein, V. (1980) Attitudes and Disabled People (New York, World Rehabilitation Fund). Finkelstein, V. (1981) Disability and the helper-helped relationship, in: A. Brechnin, P. Liddiard & J. Swain (Ed.) Handicap In A Social World (Beckenham, Hodder & Stoughton). George, V. & Wilding, P. (1976) Ideology and Social Welfare (London, Routledge & Kegan Paul). Ginsberg, N. (1979) Class, Capital and Social Policy (Basingstoke, Macmillan). Gough, I. (1978) The Political Economy of the Welfare State (Basingstoke, Macmillan). Goldsmith, S. (1976) Designing for the Disabled (London, RIBA). Gregory, J. (1979) Sex discrimination, work and the law, in: B. Fine et al. Capitalism and the Rule of Law (London, Hutchinson). Grover, P. & Gladstone, F. (1981) Disabled People—a right to work (London, Bedford Square Press). Hadley, R. & Hatch, S. (1982) Social Welfare and the Failure of the State (London, Allen & Unwin).

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Hanks, J. & Hanks, L. (1980) The physically handicapped in certain non-occidental societies, in: W. Phillips & J. Rosenberg (Ed.) Social Scientists and the Physically Handicapped (London, Arno Press). Harris, A. (1971) Handicapped and Impaired in Great Britain (London, HMSO). Jaehnig, W. (1974) Seeking out the disabled, in: D. Boswell & J. Wingrove (Ed.) The Handicapped Person in the Community (London, Tavistock). Krause, E. (1976) The political sociology of rehabilitation, in: G. Albrecht (Ed.) The Sociology of Physical Disability and Rehabilitation (Pittsburgh, University of Pittsburgh Press). Loney, M., Boswell, D. & Clarke, J. (1983) Social Policy and Social Welfare (Milton Keynes, Open University Press). Maisel, E. (1953) Meet a Body (New York, Institute for the Crippled and Disabled). Manning, N. & Oliver, M. (1985) The medicalization of social problems, in: N. Manning (Ed.) Social Problems and Welfare Ideology (Aldershot, Gower). Office of Health Economics (1979) Perinatal Mortality in Britain—a question of class (London, OHE). Office of Health Economics (1977) Physical Handicap—social impairment (London, OHE). Oliver, M. (1981) Disablement in Society (Milton Keynes, Open University Press), Unit 2 of OU course The Handicapped Person in the Community. Oliver, M. (1984) The politics of disability, Critical Social Policy, 11. Oliver, M. (1983) Social Work With Disabled People (Basingstoke, Macmillan). Ryan, J. & Thomas, F. (1980) The Politics of Mental Handicap (London, Penguin). Ryan, W. (1971) Blaming the Victim (USA, Orbach & Chambers). Scott, R. (1970) The construction of concepts of stigma by professional experts, in: J. Douglas (Ed.) Deviance and Respectability (New York, Basic Books). Shearer, A. (1981) A framework for independent living, in: A. Walker & P. Townsend (Ed.) Disability Rights in Britain (Oxford, Martin Robertson). Stone, D. (1984) The Disabled State (Basingstoke, Macmillan). Sutherland, A. (1981) Disabled We Stand (London, Souvenir Press). Taylor-Gooby, P. & Dale, J. (1980) Social Theory and Social Welfare (London, Edward Arnold). Topliss, E. & Gould, B. (1981) A Charter for the Disabled (Oxford, Blackwell & Robertson). Topliss, E. (1979) Provision for the Disabled (Oxford, Blackwell & Robertson). Union of the Physically Impaired Against Segregation (1981) Disability Challenge, No. 1 (London, U.P.I.A.S.). Union of the Physically Impaired Against Segregation (1984) Disability Challenge, No. 2 (London, U.P.I.A.S.). Union of the Physically Impaired Against Segregation (1976) Fundamental Principles of Disability (London, U.P.I.A.S.). Wilson, E. (1977) Women and the Welfare State (London, Tavistock). World Health Organisation (1980) International classification of Impairments, Disabilities and Handicaps (Geneva, WHO).

2

The concept of oppression and the development of a social theory of disability Paul Abberley Department of Economics and Social Science, Bristol Polytechnic

Abstract In this paper it is argued that a social theory of disability can best be developed through the use of the concept of oppression. This concept is outlined, and special emphasis is placed on the importance of the social origins of impairment in such an analysis. The ways in which this approach would utilise data gathered from other theoretical perspectives is indicated. General features of a theory of disability as oppression are specified.

I would like to preface this article with some short autobiographical notes, not because I think these are ultimately relevant to the adequacy or otherwise of the ideas put forward, but rather because an understanding of the context in which the material was produced may make clearer the reasons behind certain concerns and emphases. At the age of five I contracted poliomyelitis in the last major epidemic of the disease to occur in this country. I spent six weeks in an iron lung, eight months in a hospital bed, and by the age of seven had regained sufficient mobility to attend a state primary school. Some 25 years later, working as a lecturer in sociology, I began to receive requests from some of my colleagues to talk to their students about ‘disability’. My first response was one of annoyance and resentment, since I had spent most of my life, as many ‘successful’ disabled people do, attempting as far as possible to deny and ignore what is in fact a very obvious collection of impairments. But beyond this, I felt that, as a sociologist, I had nothing to say about disability, since the small amount of academic material I was familiar with struck me as both inadequate as an explanation of my own experiences and quite foreign to what I considered ‘good sociology’. Further investigation, during a year’s study leave at the University of Warwick, convinced me that, with a few notable exceptions, the sociology of disability is both theoretically backward and a hindrance rather than a help to disabled people. In particular it has ignored the implications of significant advances made in the last 15 years in the study of sexual and racial inequality, and reproduces in the study of disability parallel deficiencies to those found in what is now seen by many as racist and sexist sociology. Another aspect of ‘good sociology’ that I feel is generally absent is any significant recognition of the

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historical specificity of the experience of disability. In my own case, had I been born a few years earlier, before the development of respiratory support systems, I would have died; a few years later and the advent of effective vaccination techniques would have made my contraction of the disease improbable. In view of this, and similar related considerations, I came to understand my own disabilities in terms of a unique conjunction of factors, a view which I now try to apply to disabled people in general. It is on the basis of such ideas about myself as a disabled person that the following work has been produced. A number of writers, most recently Mike Oliver in this journal (Oliver, 1986) have employed the term ‘oppression’ in the analysis of disability. However, the meaning attached to this term is ill-specified. Oliver, for example, in an earlier draft of his paper, though not in the published version, where any attempt to give precise meaning is absent, uses it interchangeably with exploitation, and it is not defined but rather seen as an ‘obvious’ but difficult to substantiate characteristic of ‘social relations under capitalism’. While this is clearly an advance on the ‘personal tragedy theory of disability’ criticised in the same article, for the notion of oppression to be a useful one the term must be more clearly specified, both in general and in relation to disability in particular. To draw an analogy between disabled people and groups to whom the term oppression has been applied is by no means a new occurrence. In the literature of disability a number of studies comment, but no more than comment, on the similarity between disabled/normal interactions and those encountered in studies of race relations. Barker for example remarked as long ago as 1948: “the physically disabled person is in a position not unlike the Negro, the Jew and other under-privileged racial and religious minorities,” (Barker, 1948, p. 31) while Handel in 1960 observed that his report “sounded as though we were considering a problem of race relations instead of disability” (Handel, 1960, p. 363). Again Chesler in 1965 claims to have found that individuals manifesting high ethnocentrism, or high rejection of outgroups, also expressed rejection of the physically disabled (Chesler, 1965, pp. 877–882). A recent study in the Journal of Maxillo-facial Surgery, reported in New Society in June 1985, claims that on the basis of a photograph study “children don’t start reacting badly to abnormal looks until they are at least 11 years old” and that consequently “discrimination against funny-looking people is not some innate result of evolutionary forces, it is socially learned” (New Society, 1985). There is a striking parallel here to Davey’s book length study of racism and its acquisition (Davey, 1983). Interestingly, amongst the studies reported in this volume is one (Richardson & Green, 1971) where it was found in a sample of white children in London schools that visible physical handicap was a greater deterrent to friendship that blackness. In Davey’s discussion this is regarded as an ‘encouraging’ finding! (op. cit., 113). But despite observations and insights of this kind, the sociological literature of disability has carried such ideas no further. Indeed, the oft-quoted Davis asserts: “Because the visibly handicapped do not comprise a distinct minority group or subculture, the imputations of gener-

The concept of oppression 23 alized deviance that they elicit from many normals are more nearly genuine interactional emergents than the conventionalized sequelae to intergroup stereotyping, as for example, might obtain between a Negro and white” Davis (1961:122). Yet there is no argument per se for this position. Rather Davis gives an illustrated Interactionist account, made ‘special’ by its emphasis on ‘coping’ behaviour, and concludes by emphasising a similarity to and continuity with ‘normal’ interaction. The focus of Davis’s analysis upon personal interactions and the denial of any generalised group membership, reduces the issue of disability to a ‘deviance’ progressively dissolved in repeated interactions with particular individuals, only to be re-encountered on each new acquaintance. It is clear then that if the notion of oppression is to be of use in the analysis of disability in society, and most importantly of use to disabled people in understanding and transforming their own situation, we must clarify and develop what is meant by the term.

The concept of oppression Given the complexity of theoretical issues surrounding theories of oppression, (Barrett, 1981; Jaggar, 1983; Brittan & Maynard, 1984) at this stage it is possible to say only in broad outline how a theory of oppression could inform our understanding of the situation of disabled people in Britain today. To argue that we need to analyse the position of disabled people as a form of oppression is not to make the claim that we can arrive at a monolithic theory of oppression into which we can fit women, black people, disabled people or gay people depending on which particular oppressed group is under discussion at the time. A crucial feature of oppression and the way it operates is its specificity, of form, content and location; so to analyse the oppression of disabled people in part involves pointing to the essential differences between their lives and those of other sections of society, including those who are, in other ways, oppressed. It is also important to note that probably more than half of disabled people in Britain today suffer the additional burden of racial and/or sexual oppression (Campling, 1981; Confederation of Indian Organizations (U.K.), 1986). To claim that disabled people are oppressed involves, however, arguing a number of other points. At an empirical level, it is to argue that on significant dimensions disabled people can be regarded as a group whose members are in an inferior position to other members of society because they are disabled people. It is also to argue that these disadvantages are dialectically related to an ideology or group of ideologies which justify and perpetuate this situation. Beyond this it is to make the claim that such disadvantages and their supporting ideologies are neither natural nor inevitable. Finally it involves the identification of some beneficiary of this state of affairs. The term oppression, while regularly encountered in discussion of racial and sexual disadvantage and of the ‘national question’, does not appear in encylopediae of social science, nor in the generally useful Dictionary of Marxist Thought

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(Bottomore, 1983). Collins English Dictionary gives four meanings for the word oppress: 1 2 3 4

to subjugate by cruelty, force, etc.; to lie heavy on (the mind, imagination, etc.); to afflict or torment; an obsolete word for overwhelm.

In talking of racial or sexual oppression we are clearly not employing any one of these definitions, although aspects of all four meanings are contained within the term, whose use has developed in relation, and complementary, to classical Marxist class analysis. Class analysis per se has emerged as an unsatisfactory tool for the analysis of racial and sexual disadvantage, which is experienced in addition to, or perhaps more accurately through, people’s class experiences. It is to such sets of experiences that the concept of oppression is addressed. Oppression and exploitation are not equivalent concepts. . . . Exploitation speaks to the economic reality of capitalist class relations for men and women, whereas oppression refers to women and minorities defined within patriarchal, racist and capitalist relations. Exploitation is what happens to men and women workers in the labour force; woman’s oppression occurs from the relations that define her existence in the patriarchal sexual hierarchy—as mother, domestic labourer and consumer. Racial oppression locates her within the racist division of society alongside her exploitation and sexual oppression. Oppression is inclusive of exploitation but reflects a more complex reality. Power—or the converse, oppression—derives from sex, race and class, and this is manifested through both the material and ideological dimensions of patriarchy, racism and capitalism. Oppression reflects the hierarchical relations of the sexual and racial division of society. (Eisenstein, 1979: 22–3) For this author oppression is not an alternative explanatory device to exploitation, rather it is addressed to a different order of phenomena, those connected with a person’s gender or race experiences rather than their class experiences. Oppression is complementary to exploitation, extending the range of Marxist analysis to cover areas the latter concept cannot reach. In developing theories of sexual and racial oppression it has been necessary for theoreticians of the women’s and anti-racist movements to settle accounts with biology, which in both cases has been employed to explain and to justify social disadvantage. For a theory of disability as oppression however an important difference arises when we consider the issue of impairment. While in the cases of sexual and racial oppression, biological difference serves only as a qualificatory condition of a wholly ideological oppression, for disabled people the biological difference, albeit as I shall argue itself a consequence of social practices, is itself a part of the oppression. It is crucial that a theory of disability as

The concept of oppression 25 oppression comes to grips with this ‘real’ inferiority, since it forms a bedrock upon which justificatory oppressive theories are based and, psychologically, an immense impediment to the development of political consciousness amongst disabled people. Such a development is systematically blocked through the naturalisation of impairment. Further, the evaluative connotations are cognitively as well as effectively contained in terms which themselves imply deficiency, in contrast to ‘woman’ and ‘black’. This is not to suggest that perceptions can be changed by changing words but to point to the deeply entrenched rejection of ‘impairment’ as a viable form of life and to the ‘commonsense’, ‘natural’ and ‘unconscious’ nature of ideologies of impairment, disability and handicap. This rejection of the authenticity of impaired life forms is exhibited both in the obvious form of what Dartington, Miller and Gwynne (1981) call the “less than whole person” view, and its inverse, the “really normal” ideology, which finds its expression in everyday life in the exceptionalism of ‘but I don’t think of you as disabled’, denying a key aspect of a disabled person’s identity in what is intended as a compliment. Compare this phrase to ‘played like a white man’ and ‘she thinks like a man’. What is required is essentially an attitude of ambivalence towards impairment, that is “co-existence in one person of love and hate towards the same object” Concise Oxford Dictionary (1964). Impairment must be identified as a bad thing, insofar as it is an undesirable consequence of a distorted social development, at the same time as it is held to be a positive attribute of the individual who is impaired. An analogy may be drawn here with the feminist treatment of so-called ‘women’s troubles’. The key distinction that must be made is between the prevention of impairment, on the one hand, and attitudes to and treatment of people who are already impaired on the other. A pertinent recent example of the necessity for such a distinction is displayed in the boycotting of the 1985 Manchester International Conference on Education of the Deaf by the British Deaf Association and the National Union of the Deaf. “The objection is that the main discussion will be the development of electrode implants, which have the potential to restore ‘hearing’ even to the totally deaf, provided that they once could hear” (Guardian 5 8 85). The education chairman of the National Deaf Children’s Society said that deaf children could lead a full life using other forms of communication such as sign language. “They shouldn’t get the idea that the thing is to be more like a hearing person at any cost” he said (ibid.). While the boycotters’ attitude to impairment is one of ambivalence, as defined above, and thus of respect for disabled people, the members of the medical profession who determined the agenda clearly expressed their own rejection of the disabled state by determining that a dubious ‘rectification’ procedure, to which they raised only technical objections, should be the main business of a conference which occurs once every five years. Yet if the inferiority embodied in impairment is understood as purely or primarily biological in origin, the suggested analogy with racial and sexual oppression appears to be an inherently dubious one, since the core of such theories is that disadvantage is ultimately a social and not a biological product. A theory of

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disability as oppression then must offer what is essentially a social theory of impairment.

Impairment as a social product The general tendency within medicine has been to attribute most impairments which are not identified as the consequence of acute illness and infection to ‘normal’ wear and tear on the human body. Causation, on this view, is ascribed either to ‘germs’ or to ‘life’. Any ‘social’ involvement is presented as secondary or peripheral to the major identified patterns of ‘natural’ causation. But an alternative account of the origin of impairments is at least as viable. To take the major cause of impairment in Britain, some five million people are thought to suffer from osteo-arthritis, and some one million from rheumatoid arthritis (British League Against Rheumatism, 1977). While often regarded as ‘simply’ a degenerative process, “a number of rheumatic problems are known to arise in connection with various occupations. Unfortunately economic factors have usually not allowed this knowledge to be fully exploited. Primary prevention would call for changes in methods of working and in the job environment, and these are often costly” (Arthritis & Rheumatism Council (n.d.: 11)). Thus an alternative view of this major cause of impairment would locate explanation not at the ‘natural’ or ‘individual’ level, but in the socioeconomic context of its occurrence, of which ‘physical degeneration’ is by no means an independent variable. To extend this argument further, the pace and direction of the development of preventative and ameliorative techniques are themselves the product of socio-economic factors, which are in turn effected by what are fundamentally political decisions. Thus at both these levels social aspects of impairment causation may be discerned. Whilst most incapacity resulting from injury sustained at work is categorised as of relatively short duration, about a third results in permanent or possibly permanent damage (Pearson, 1978). In addition to accidents, some 16,000 people a year contract an industrial disease as prescribed under the 1975 Social Security Act, the main categories being infective dermatitis (10,000), traumatic inflamation of the tendon (3400) and beat knee (1000). However, the comparison of such statistics, based on DHSS records which exclude certain diseases known to be caused or exacerbated by industrial injury, to a personal injury survey, led Pearson to conclude: There were substantial numbers of illnesses where there appeared to the sufferer to be a probable link between the illness and conditions of work, possibly amounting to five times the number of prescribed diseases recorded by the DHSS. (Pearson, 1978, Vol. 2:66) Nichols (1986) echoes this sentiment, as have other writers who argue that official figures on work-based impairments constitute merely the tip of the iceburg

The concept of oppression 27 (Kinnersley, 1973; Thunhurst, 1982; Navarro, 1982), and argues further that since 1978 the rate of disabling injuries and deaths in manufacturing industry has increased. Mirroring impairment caused by the process of production is that attributable to the willing or unwilling consumption of its products. While perhaps the most notorious recent example in Britain is the drug Thalidomide, other products of the pharmaceutical industry are, or should be, similarly implicated. Of the 70,000 personal injuries attributed by Pearson to defective products or services (about 2
% of all injuries) around half involved prescribed drugs. At the World Mental Health Congress in Brighton in July 1985, Dr David Hill, Senior Psychologist at Walton Hospital, Chesterfield argued that 25 million patients throughout the world had suffered irreversible brain damage as the result of the administration of powerful tranquillisers such as Largactil (The Guardian). His critics made no attempt to rebut this contention, but simply averred that there was no alternative. At a world level, the deleterious health effects of prescribed drugs is chillingly documented (Muller, 1982). While, in the ‘developed’ world, at least, vaccination has reduced to a trickle the number of cases of many diseases, vaccine-related damage has itself caused impairment, in those who have paid the individual cost of general health improvement. The development of effective vaccination techniques has also had the paradoxical effect in some cases of disadvantaging those who have already been impaired by a disease. For example: The end of the recurrent epidemics of polio meant that the disease, and therefore its victims, lost their high profile. There was a reduction in new research on the disease, its process, and its management. This meant that knowledge about the epidemiology and pathology of polio has been essentially stalled at the level of medical knowledge in the mid-1950s. . . . Part of the context of any particular disability is its topicality in the medical or in the public eye. Like cancer today, polio once attracted attention beyond its actual level of threat to the population; however, once immunization removed that threat, polio became a ‘non-issue’. (Kaufert & Kaufert, 1984: 616) It should be noted that any removal of the threat of polio is only a local one. Contrary to general medical belief in the 1940s and 1950s, polio is by no means a ‘disease of civilisation’; recurrent outbreaks are still endemic in much of the world, where vaccination has been seen as unnecessary or where methods of administration have been ineffective. It is estimated that the world population of disabled people is around 500 million, over two-thirds of whom live in developing countries, and that one in ten of the world’s children is physically or mentally disabled. Some authorities argue that up to 50% of world disablement is either preventable or significantly rehabilitable at a cost of a few pounds per head (Shirley, 1983). For example

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around 6000 children go blind each year in Tamil Nadu due to easily remediable vitamin A deficiency. Yet Dr Michael Irwin, UNICEF co-ordinator for the International Year of Disabled People said, “only 1 or 2% of the disabled children in the Third World are reached by any rehabilitation” (The Guardian, 1981). Another major contributory factor in the aetiology of impairment is nutrition; yet it is universally recognised that world food supplies exceed world need, and that malnutrition today is a consequence of political decisions, not ‘acts of God’. As far as the majority of the world’s disabled people are concerned, impairment is very clearly primarily the consequence of social and political factors, not an unavoidable ‘fact of nature’. Returning to the developed world, advances in medicine have had the effect of increasing the survival rate of previously ‘non-viable’ individuals, producing an increased proportion of severely and multiply impaired young people—the improved survival rates of people suffering from Downs Syndrome and Spina Bifida are cases in point. The generally unquantified effects of environmental pollution, and the impairing effects of the consumption of foodstuffs, tobacco and alcohol on individuals and their future offspring must also be noted, although here I will deal with these aspects no further. Impairment may result from so-called hereditary factors or injury incurred at or soon after birth. Data from the National Child Development Study showed an incidence of serious defects which were congenital or had arisen shortly after birth as 30.8 per thousand live births. By seven years old the incidence was 19.6 per thousand, about half resulting in disablement. A further nine children had very poor sight, and three per thousand poor hearing (Davie et al., 1972). The example of Phenylketonuria (P.K.U.) reveals the complex interconnection between congenital and social factors in the production of impairment. This hereditary inability to metabolise the amino-acid phenylalanine may today be detected and, through dietary control, mental retardation be prevented. Prior to the development of methods of detection and treatment, it may have appeared eminently reasonable to characterise the disorder as a congenital one; it would now appear equally correct to characterise it as socially determined, in that only individuals born in environments in which tests for the presence of the P.K.U. phenotype are not conducted, and where there is no available treatment, will suffer the subsequent impairment. It would thus seem impossible to adequately draw a dividing line between genetic and environmental, and thus ultimately social, factors. Rather, the designation of genetic factors as primarily causative is itself a judgement determined by knowledge, interest and intention, in other words, a political judgement. It is possible at this point to clarify the nature of the claim that impairment is to be understood as social in origin, and to distinguish it from the more usual sociological generalisations about the social origins of handicap. The latter position, at least in its more worked out forms, presents handicap as totally the product of social meanings, in other words as reducible to ‘attitudes’. It implies that a change in attitudes could abolish disability. Claims about the social origin of impairment, however, are directed at the explication of the social

The concept of oppression 29 origin of what are material and biological phenomena, and should be understood not as dissolving these material elements into attitudes or ideas, but rather as pointing to the inextricable and essential social elements in what constitutes a material base for ideological phenomena. Thus such a view does not deny the significance of germs, genes and trauma, but rather points out that their effects are only ever apparent in a real social and historical context, whose nature is determined by a complex interaction of material and non-material factors. For example, while the link between tobacco consumption and lung cancer, bronchitis and ischaemic heart disease is demonstrably a material one, the occurrence and incidence of tobacco consumption is to be understood primarily in terms of social factors, as is the level and kind of ameliorative provision available. At a political level, focusing upon kinds and rates of impairment, posing as they do in an explicit and graphic form the contradictions between the potentially beneficial nature of medical science and its restrictions and deformations in the capitalist mode of production, can be seen as forming a materialist basis for a theory of disability as oppression. It is the general failure of the Left to make such connections between capitalism and impairment which accounts for the fact that “no group on the ‘revolutionary Left’ . . . takes disablement seriously” (Sutherland, 1981: 17). But Sutherland takes the discussion no further in his reliance on the ‘naturalistic’ view that “disablement is not merely the physical state of a small minority of people. It is the normal condition of humanity” (ibid., 18) since such a view separates some abstract ‘human condition’ from the social and historical conditions of its production. It cannot answer the question, why, if disablement is the ‘normal condition of humanity’ are only some members of the human race accorded the label ‘disabled’?

Common features of disadvantage A characteristic of the literature of racial and sexual oppression is that it identifies certain generally common features of economic social and psychological disadvantage suffered by members of the oppressed group. The nature and extent of these disadvantages is by no means uniform or constant between groups or within groups over time, and can only be adequately described after detailed empirical investigation. Considerable literature exists to indicate the material disadvantages suffered by disabled people. To take only one recent example, Townsend (1979) produces a picture of low pay, longer hours, worse working conditions and housing, coupled with a higher likelihood of unemployment. For the purposes of this paper I shall assume this study’s findings as typical, reliable and valid, and explore this dimension no further. In addition to material and economic disadvantage, another extensive body of work, of which perhaps the most famous example is still Goffman’s Stigma (Goffman, 1963), documents social and psychological disadvantage from what is explicitly or implicitly an Interactionist perspective. From the point of view of a theory of disability as oppression such studies are important in that they can be viewed as identifying

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and describing the social mechanisms by which the conditions described by social accountants such as Townsend are produced and reproduced. Care must be taken in ‘translation’, since a common feature of such studies is the assumed inevitability or ‘rightness’ of what is described. However, taken together and adequately re-interpreted such studies can form an important element in the development of a theory of disability as oppression. For example, Katz et al. (1979, 506) found that “Identical behaviours have different social meanings when produced by a normal and by a disabled person. The pleasant competent ‘wheelchair bound’ group leader aroused anger and got less help because she appeared to violate the stereotyped stigma role requirement which seems to require the disabled person to suffer and be inadequate. When the confederate in the wheelchair was caustic and hostile, this seemed to confirm social expectations and subjects were willing to offer more help.” In commenting on such examples we should endeavour to map out key features of the stereotype of the disabled person which a particular social formation produces and acts towards real disabled people in terms of. Our objective should be the explication of the material conditions which generate such stereotypes, not the mere description found in Interactionist approaches and empiricist psychology. One key aspect of this stereotype in modern Britain is that whilst his/her ‘primary identity’ (Shearer, 1981, 23) resides in disability, the legitimacy and value of this identity is simultaneously denied. Whether perceived as ‘tragic’ or ‘brave’ a total identity of the person and the disability is assumed—but at the same time the disabled state is taken for granted as necessarily illegitimate to the extent that: A crude and obtrusive imitation of a ‘normal’ body is held to be preferable to an elegant and efficient tool that makes no pretence of being anything other than what it is. (Sutherland, 1981: 75) and There’s a tremendous emphasis on a child who’s had polio or whatever to walk. . . . It’s like standing up is considered infinitely better than sitting down, even if you’re standing by standing in a total frame that weighs a ton, that you can’t move in, which hurts and takes hours to get on and off and looks ugly. It’s assumed that that is what you want and that that’s what is best for you. (Ibid., 73) The importance of the body in modern western society has been noted, for example in feminist literature and in considerations of youth culture, although any systematic sociological study has until recently been absent (Turner, 1984). For disabled people the body is the site of oppression, both in form, and in what

The concept of oppression 31 is done with it. The prohibitions upon deaf children signing to each other as “something evil, like wanking-things you do with your hands that you’re not supposed to” (Sutherland, 1981: 56) are the mirror image of the unrealisable ideals of physical perfection and competence constantly presented in the media and in conventional sporting and recreational material. But perhaps more significant than the requirements and prohibitions on what you do with your body as a disabled person are the things that are done to it. These ‘rapes’ and ‘carryings off into slavery’ correspond for disabled people to the more publicised features of sexual and racial oppression, and are often perpetuated in everyday life by the actions and the gaze of ‘normal’ people. Interactionist studies, because of their failure to link interpersonal relations with the material base upon which interactions take place, can never proceed beyond the level of a descriptive and implicitly justificatory account. Impairment, taken as a given ‘natural’ property rather than a social product ultimately ‘explains’ discrimination and disadvantage for such analyses via appeal to some social mechanism parallel to the posited ‘basic ethnocentrism’ employed in some studies of race. A further significant point to emerge from the consideration of such studies is the degree to which they produce and propagate a misidentification of who disabled people are. While the stereotype of disabled people (as implied and in turn produced by the disability logo appearing on lavatory doors and motor cars) is of young people in wheelchairs as a result of MS, amputation, etc. This is far from the reality of the vast majority of disabled people. The mean age of the ‘young chronic sick’ on Wood’s (Wood, 1978) calculation was in 1978 50.3 years, only 9.8% disabled people being less than 45, a fact which has prompted a minor terminological amendment in the most recent literature, with ‘young’ renamed ‘younger’ (Royal College of Physicians, 1986b: 4). Causes of impairment were also found to be at odds with the stereotype. Causes of severe disability Arthritis Stroke or Parkinson Cardio-respiratory

31% 15% 13%

MS 2.8% Amputation 1.5% Paraplegia 1.3% Polio 0.7% (derived from Bury 1979, similar calculations can be made on the basis of data in Royal College of Physicians, 1986a).

There are a number of implications significant for a theory of disability as oppression which arise from this misidentification. Given the prevalent causes of impairment, the significance of the activities or inactivity of the medical agencies should not be underestimated, as it frequently is in certain sociological studies, and by those members of the general public who claim to view disabled people as ‘just like everyone else’. Were the majority of disabled people subject

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to relatively stable conditions for which no medical interventions were appropriate such positions would be more tenable, but the predominant biological causes of impairment are conditions for which modern medicine at least lays claim to some ameliorative competence. The stereotype addresses itself to people who, were they not disabled, would be expected to work—thus the Poor Law concerns with legitimacy described by Stone (1984) surface again, in public perception and concern if not in statistical reality (on Bury’s calculation 57.9% of impaired adults were over 65 years of age). This group is also that identified in the Royal College of Physicians’ report (1986a) as the one for whom provision is least adequate, and who are also identified in more anecdotal sources as subject to the most demeaning of ‘tests’ in seeking mobility allowances (The Guardian, letters, Aug. 1986). This misidentification, while merely puzzling to Bury, can be seen as performing a number of important functions for the present social system. First, by directing attention away from impairment associated with ageing, it naturalises this aspect of the situation, and reduces the amount of perceived disability in society, so that disability appears as ‘exceptional’. In reality about five and a half million, or one in ten people, in Britain today are disabled, approximately the same as the proportion of the workforce who are currently suffering from unemployment. Secondly, it focuses on that aspect of disability, namely its ability to effect potential workers, which is the primary concern of capitalism, for which the ‘problem’ of disability is why these people aren’t productive, how to return them to productivity, and, if this is not seen as economically viable, how to handle their non-productivity in a manner which causes as little disruption as possible to the over-riding imperative of capital accumulation and the maximisation of profits. Yet if the primary object of such theories is the ‘young’ disabled people, their effects reverberate far beyond their immediate subjects. One effect of the downgrading of the disabled state is to lead all people, including the ‘young’ disabled themselves, to deny their own suffering and to normalise their situation, thus maintaining the existing structures of social organisation and of work. Beyond this, society as a whole is affected, via the propagation of the work ethic and notions of normalcy implicitly contained in such theories. At this level there is a parallel with the argument (Brittan & Maynard, 1984) that racial and sexual oppression are integrally connected to masculine power in the notion of masculinity as mastery over nature. The points raised by Hunt (1966: 146), who argues that disabled people challenge the prevailing norms of society in five main ways, “as unfortunate, useless, different, oppressed and sick”, indicate how the mode of being of disabled people can be seen as constituting a paradigmatic negation of masculinity as thus conceived. As in the cases of women and black people, oppressive theories of disability systematically distort and stereotype the identities of their putative subjects, restricting their full humanity by constituting them only in their ‘problem’ aspects. The more fashionable but equally unacceptable liberal reaction to this view is to deny all differences—similar to the assimilationist perspective in race

The concept of oppression 33 relations, and thus similarly devaluing and denying the authenticity of an impaired person’s experience, dissolving real problems in the soup of ‘attitude change’. Both these viewpoints contain the explicit or tacit assumption that ‘impairment’ is a universally acceptable and primary explanatory factor. This can be seen particularly in the ‘mourning’ theories criticised by Oliver (1983), and reaches its most refined and nonsensical expression in such pronouncements as “he had the required toughness of mind—despite, or perhaps because of, legs crippled by polio” (Heren, 1984). As with racism and sexism, a theory of disability as oppression must at some point face the question of who benefits from oppression. Whilst certain individuals and groups can be seen to accrue short-term advantage (a consideration of the manufacture, supply and fitting of artificial limbs in Britain today provides graphic examples of this) the main and consistent beneficiary must be identified as the present social order, or, more accurately, capitalism in a particular historical and national form. These latter distinctions are important ones, if we are to understand variations in policy and attitudes between nations and over time (Mitchell, 1985). I have largely argued from analogy and through criticism of extant theoretical perspectives on disability. But this analogy has, I hope been a sustained one, and the criticisms have not been random. Taken together they imply a number of things about what an alternative theory, a theory of disability as oppression, will be concerned with and what it will look like, in contrast to oppressive theories. In conclusion I will try to make these points more explicit. Some of the general effects of the oppression of disabled people are as follows. 1 It discourages individuals from trying to take up the ‘privileges’, to use Stone’s (Stone, 1984) somewhat curious term, of disability and thus exempt themselves from the work process. 2 Because of negative stereotypes and material disadvantages connected to disability it encourages people, where possible, to normalise suffering and disease so as not to include themselves in a despised and disadvantaged subgroup. 3 It helps to constitute part of a passive ‘sub-class’ of welfare recipients (Leonard, 1984) which serves as a powerful warning against falling off the achievement ladder. 4 By presenting disadvantage as the consequence of a naturalised ‘impairment’ it legitimises the failure of welfare facilities and the distribution system in general to provide for social need, that is, it interprets the effects of social maldistribution as the consequence of individual deficiency. In contrast to this, a theory of disability as oppression will attempt to flesh out the claim that historically specific categories of ‘disabled people’ were constituted as a product of the development of capitalism, and its concern with the compulsion to work. This remained until the late 19th century largely the task of legal agencies, but the rise of scientific medicine resulted in the transfer of policing from legal to medical authorities. While this clearly led to certain

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transformations in the situation of disabled people, medical ideology too devalues the impaired modes of being, at the same time as it naturalises the causes of impairment. A theory of disability as oppression, then, 1 2 3 4 5

recognises and, in the present context, emphasises the social origins of impairment; recognises and opposes the social, financial, environmental and psychological disadvantages inflicted on impaired people; sees both (1) and (2) as historical products, not as the results of nature, human or otherwise; asserts the value of disabled modes of living, at the same time as it condemns the social production of impairment; is inevitably a political perspective, in that it involves the defence and transformation, both material and ideological, of state health and welfare provision as an essential condition of transforming the lives of the vast majority of disabled people.

While the political implications of such an analysis are apparent, the conceptual consequences are also profound, since such a notion of disability as oppression allows us to organise together into a coherent conceptual whole heretofor isolated and disparate area of social research, and potentially to correct the results of such theoretical myopia. In summary, to usefully apply the notion of oppression to the complex of impairment, disability and handicap involves the development of a theory which connects together the common features of economic, social and psychological disadvantage with an understanding of the material basis of these disadvantages and the ideologies which propagate and reproduce them. Only such an account, specific and systematic, can move discussion beyond the level that it has reached so far, by bringing to bear the tools of today’s social science, rather than those of the day before yesterday.

Acknowledgements I would like to thank Sue Abberley, Caroline Freeman, Dee Northover and Christine Webb for their various contributions to the genesis of this paper.

References Arthritis and Rheumatism Council (N.D.) Arthritis Research: the way ahead (London, ARC). Barker, R.G. (1948) The social psychology of physical disability, Journal of Social Issue, 4(4), pp. 28–42. Barrett, M. (1981) Women’s Oppression Today (London, Verso). Battye, L. (1966) The Chatterley syndrome, in: Hunt, op. cit.

The concept of oppression 35 Bottomore, T. (Ed.) (1983) A Dictionary of Marxist Thought (Oxford, Blackwell). British League Against Rheumatism (1977) Rheumatism: the price we pay (London, BLAR). Brittan, A. & Maynard, M. (1984) Sexism, Racism and Oppression (Oxford, Blackwell). Bury, M.R. (1979) Disablement in society, International Journal of Rehabilitative Research, 2, pp. 33–40. Campling, J. (Ed.) (1981) Images of Ourselves (London, Routledge & Kegan Paul). Chesler, M.A. (1965) Ethnocentrism and attitudes towards the physically disabled, Journal of Personality and Social Psychology, 2, pp. 877–82. Committee on Child Health Services (1976) Fit for the Future, Vol. 1 (London, HMSO). Confederation of Indian Organisations (U.K.) (1986) Double Bind—to be disabled and Asian (London, CIO). Dartington, T., Miller, E. & Gwynne, G. (1981) A Life Together (London, Tavistock). Davey, A. (1983) Learning to be Prejudiced (London, Edward Arnold). Davie, R. et al. (1972) From Birth to Seven (London, Longman). Davis, F. (1961) Deviance & disavowal, Social Problems, 9. Eisenstein, Z. (1979) Developing a theory of capitalist patriarchy and socialist feminism, in: Capitalist Patriarchy and Socialist Feminism (New York, Monthly Review Press). Fry, E. (1986) An Equal Chance for Disabled People?—A study of discrimination in employment (London, The Spastics Society). Goffman, E. (1963) Stigma (New Jersey, Prentice-Hall). Handel, A.F. (1960) Community attitudes and adjustment to disability, Outlook for the Blind, No. 54, p. 363. Heren, L. (1984) The Observer, London, 30 December. Hunt, P. (1966) A critical condition, in: P. Hunt (Ed.) (1966) Stigma, pp. 145–159 (London, Chapman). Katz, M. et al. (1979) Journal of Personality, 46, pp. 606–609. Kaufert, J. & Kaufert, P. (1984) Methodological and conceptual issues in measuring the impact of longterm disability, Social Science and Medicine, 19, pp. 609–619. Kinnersley, P. (1973) The Hazards of Work (London, Pluto Press). Leonard, P. (1984) Personality and Ideology, Ch. 8 (Basingstoke, Macmillan). Mitchell, P. (1985) A Comparison of Social Provision For People with Disabilities in the Netherlands and the U.K. (London, RADAR). Muller, M. (1982) The Health of Nations (London, Faber). Navarro, V. (1982) The labour process and health international, Journal of Health Services, 12, pp. 5–29. New Society (1985) Findings, 7 June. Nichols, T. (1986) Industrial injuries in British manufacturing in the 1980s, Sociological Review, 34, pp. 290–306. Oliver, M. (1983) Social Work with Disabled People (Basingstoke, Macmillan). Oliver, M. (1986) Social policy and disability: some theoretical issues, Disability, Handicap and Society, 1, pp. 5–18. Pearson Commission Report (1978) Vols 1 and 2 (London, HMSO). Richardson, S.W. & Green, A. (1971) When is black beautiful? Coloured and white children’s reaction to skin colour, British Journal of Educational Psychology, 41, pp. 62–9. Royal College of Physicians of London (1986a) Physical Disability in 1986 and Beyond (London, RCP).

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Royal College of Physicians of London (1986b) The Young Disabled Adult (London, RCP). Sadgrove, J. (1985) I deserve this cigarette, New Statesman, 109(2830), 14 June, pp. 9–11. Shearer, A. (1981) Disability: whose handicap? (Oxford, Blackwell). Shirley, O. (Ed.) (1983) A Cry for Health—Poverty and disability in the Third World (Frome, Third World Group & AHRTAG). Stone, D. (1984) The Disabled State (Basingstoke, Macmillan). Sutherland, A. (1981) Disabled We Stand (London, Souvenir Press). Thunhurst, C. (1982) It Makes You Sick—the politics of the NHS (London, Pluto Press). Townsend, P. (1979) Poverty in the United Kingdom (London, Penguin). Turner, B.S. (1984) The Body & Society (Oxford, Blackwell). Wood, P.H.N. (1978) Size of the problem and causes of chronic sickness in the young, Journal of the Royal Society of Medicine, 71, pp. 437–441.

3

Women with disabilities Two handicaps plus William John Hanna Department of Family and Community Development, University of Maryland

Betsy Rogovsky Gallaudet University, Washington, DC Abstract In the USA, women with disabilities participate less in social relations, educational institutions, and the labor force than expected on the basis of male/female and male nondisabled/disabled disparities. The resulting isolation appears to be linked with attributional, nurturance and attractiveness norms within the American socio-cultural system as well as to self-image and role selection components of the women’s self-concepts. Participation, the socio-cultural system, and the self-concepts are viewed schematically as elements in a triangular relationship of circular causation.

Introduction I’m a disabled woman now. Two strikes. I’m almost out? You have to find the able parts of the disabled woman. [1] Some years ago, we happened to be casually talking about the situation of women with long-term physical impairments. The conversation led us to look for literature on the subject, but to our surprise most of the scholarly and popular literature on disability did not differentiate between men and women. Furthermore, much of this literature was based upon studies of men. Yet it seemed to us, on the basis of our personal observations, that there were differences between males and females who were disabled. As but one example, in public situations we noticed more men with visible disabilities; yet we knew that there were at least as many women who were disabled. We decided to explore this matter further. We found that the approximately 20 million American women with visual, hearing, mobility and other physical impairments have been of relatively little policy concern or scholarly interest. Policy in the USA pertaining to disability has recently gained attention as the result of the Fair Housing Act of 1988 and the Disability Act of 1990. Scholarly and other writing about women with disabilities only began to appear with any frequency in the 1980s. Despite

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several recent scholarly publications (e.g. Fine & Asch, 1988; Deegan & Brooks, 1985) and participant observer anthologies (e.g. Saxton & Howe, 1987; Browne et al., 1985), Ellien’s 1984 assessment still largely holds: “. . . the needs of disabled women have been largely unidentified and unexplored . . .” (1983–84, p. 10). We decided to embark upon a program of research. Our first agenda item was determining the extent to which the situations of disabled males and females were in fact different. There are, of course, many approaches to this question; our choice was to focus on participation in the socio-economic system. Our evidence indicates that women are more isolated from the larger system than men. Our candidate explanations came from two further personal observations; the rather negative or unflattering views people often express about women (and people generally) with disabilities, and the seemingly passive, accepting poor self-concept held by many of these women. Our research suggests that the low average participation rate of disabled women is linked with the broader socio-cultural system (and, derivatively, with the women’s self-concept). Three characteristics of our subject population are relevant: (1) they are women, (2) they have a physical disability, plus (3) they are women with a disability, that is, there are special consequences of the intersection of being female and disabled. The framework guiding our study is in the form of a triangle, including ‘participation,’ ‘socio-culture,’ and ‘self-concept.’ (Needless to say, this simplifying framework excludes many other factors that must eventually be included if a full understanding of the situation of women with disabilities is to be achieved.) Initially, we saw socio-culture as the driving force that led to low participation and poor self-concept. However, our revised view is that each of these three factors contributes to, sustains, and is influenced by the others. Thus we believe that a schematic portrayal of these factors should connect each to the other with bidirectional arrows. These relationships are portrayed in Figure 3.1.

Methods We proceed as follows. First, we look at participation drawing upon two US national survey samples. Second, we focus on the socio-cultural system and the self-concepts of women with disabilities using a series of specially conducted indepth interviews and survey questionnaires.

Figure 3.1

Women and disabilities 39 To study participation, we draw upon a US Census Bureau’s (1984) special survey that included a series of questions (a module) about health and disability, and a Louis Harris and Associates (1986) survey of disabled Americans. The Census Bureau’s survey included 18,733 people, of whom 1748 were women with at least some long-term limitation. Harris interviewed 1000 people, 553 of them female. We focus especially upon the responses of 40–49 year olds because people in this age category are less impacted on a gender-specific basis by childbirth and longevity. It should be noted that the relationship between social class and disability is especially strong among people of middle age (Heyman et al., 1990, p. 169). The numbers in our focal age category are: for the Census Bureau survey, 1877, of whom 219 are women with disabilities, and for the Harris disability survey, 126, including 61 females. Using the Census data, we compare women who have disabilities with the three other age/disability categories: non-disabled men, non-disabled women and men with disabilities. To judge whether gender and disability fully account for the situation of women with disabilities, we calculate an expected figure for women with disabilities in the following way: first, we judge the gender factor by calculating a female/male ratio drawing only upon data for those who are non-disabled; and second, we establish a disability norm by calculating a disabled/non-disabled ratio drawing upon data for men. Our presumption is that if the actual figure for women with disabilities is lower than the expected one (i.e. less participatory), then the gap between the actual and the expected figures are not fully explained by gender and disability—and therefore need further exploration. To learn about community and individual attitudes, we draw especially upon our studies of accessibility in Montgomery County, Maryland that included 30 non-random interviews with disabled adults and 102 telephone interviews with providers (Hanna et al., 1980), a set of 40 interviews lasting one to two hours we conducted with disabled women who volunteered to be interviewed (half with at least some college education, giving us some exposure to women with different life courses) in the Washington, DC metropolitan area, and questionnaire-based studies of University of Maryland undergraduate students’ disabilityfocused free associations (N = 181) and attributions (N = 130) (Hanna, 1986). Some of the contrasts we discover are statistically significant, whereas others are not. However, the direction of the results is consistent. It is the overall pattern which we find impressive—and suggestive of the situation of women with disabilities. Because the emphasis at this stage of our work is on general patterns, we cannot consider the undoubtedly rich variations based upon such factors as degree and visibility of impairment, social class, ethnic group membership and sexual orientation.

Socio-economic participation Most women with disabilities are clearly not full or equitable participants in American society. Saxton & Howe (1987, p. 2) refer to “isolation” as one of the

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serious aspects of “the oppression of disability.” In this section, we review some of our survey evidence. Social relations. Women with disabilities appear to be relatively isolated at various levels of the social system. This may in part be due to ‘shunning’ by others, and it may reflect a general tendency of women with health problems to withdraw more than men do. Morris (1989, p. 106) writes, “There can often be barriers to forming new friendships, mainly stemming from people’s ignorance and fear of disability but also from our own feelings and lack of confidence.” Our exploration begins by looking at marriage. Consider first whether a person has ever been married. The Census data reveal that women with disabilities constitute the categoric group most likely to have remained single. These are the figures: male non-disabled, 4%; female non-disabled, 3%; male disabled, 4%; and female disabled, 7% (the expected figure is 3%, less than half the actual one). Suggestively, Harris reports that about half of the unmarried female respondents in his sample considered their disability to be an obstacle to “opportunities to marry.” Turning now to those people who were or are married but not widowed, there is another indication of isolation. Disabled women are more likely to be divorced, separated, or married living apart than are those in the comparison groups. The figures are as follows: male non-disabled, 12%; female non-disabled, 15%; disabled male, 11%; female disabled, 25% (expected, 14%). Thus women with disabilities are less likely to marry and more likely to have a marriage effectively end than are their counterparts. A wide variety of other evidence lends support to this picture of greater social isolation. For instance, women with disabilities are less likely to have children and to have intimate relationships. Suggestively, marriage and other social ties have repeatedly been found to be associated with good health. Thus disability may lead to isolation, but isolation may also contribute to disability. Social isolation is reinforced by the lack of spatial mobility due to one’s impairment, the handicapping deficiencies of the public transportation system, and the lack of funds to overcome private transportation barriers. Of course, people with mobility impairments are challenged by this problem; but it is equally challenging for those with a variety of other disabilities. Education. Data on educational achievement reveal that people with a disability face severe handicaps created by educational institutions. Among non-disabled males, only 16% did not graduate high school; 47% attended college for at least some period of time. For able bodied females, the figures are 18% and 38%. However, for males with disabilities, 33% did not graduate high school, and only 34% attended college. And for females with disabilities, the figures are 42% and 25%. The expected figures for women with disabilities are 37% and 28%, again suggesting that gender and disability alone do not fully account for the situation of women with disabilities. These statistics are about years of formal education; they do not begin to reveal the differences in the educational experiences (or payoffs) due to the special needs and challenges faced by those with disabilities, combined with the

Women and disabilities 41 discrimination practiced by some educational service providers. A satisfactory understanding of the impact of education on women with disabilities should compare the content of education offered to non-disabled and disabled males and females. Here, we can only suggest that differences exist which may have an important impact upon knowledge, skills, and self-esteem. One example: sex education for women with disabilities is vital, and it should include information about sexuality in relationship to the disability. Yet special education students are not always included in hygiene (Hannaford, 1985, p. 78) or sex education classes, and the material in the classes rarely incorporates information about disabilities (Ellien, 1983–84, p. 10). Labor force. The above contrasts are reinforced by an examination of labor force data. The Census Bureau’s survey reveals that 40–49 year old women with disabilities have a less-than-expected rate of labor force participation. Among the non-disabled, fully 91% of our males had a job compared with 65% of the females; for those with disabilities, the figures are 73% and 43% (expected, 52%). The disparity across gender and disability is further revealed by an examination of full-time employment. Here, the figures are as follows: male nondisabled, 88%; female non-disabled, 49%; male disabled, 69%; and female disabled, 33% (expected, 38%). Education does not overcome the job gap. At every level of education, including the highest, we find that women with disabilities have unexpectedly low participation rates. Disabled men begin with some programmatic (and even nationalistic) advantages. ‘Hire a vet’ campaigns may help disabled veterans and other disabled males, but they are not likely to help disabled females (even though some are veterans). In addition, job related disabilities (more common among men) increase the chances of satisfactory rehabilitation and re-employment (see Altman, 1985). Many impairment-related factors impact employment. For instance, some employers do not want to have a disabled employee because of the tangible costs (e.g. building entry ramps) and symbolic ones (e.g. thinking that disabled woman equals disabled business). Also, employers might not understand an impairment and consequently magnify or erroneously view its impact upon performance. Not surprisingly, differences in employment are reflected in income. For people in their forties, the mean monthly income of non-disabled males is $2330; and for non-disabled females, it is $1744. But for those with disabilities, the figures are $843 for males and $578 for females (expected, $631). A similar pattern is revealed when only looking at full-time workers.

Socio-culture What’s going on here? Why is the participation of disabled women, on the average, so low compared with their non-disabled and male counterparts? To borrow a Parsons (1951, p. 431) duality, disability is defined physically and socio-culturally. Disabled women and men are, of course, limited physically and

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handicapped by such barriers as curbs and meetings not interpreted. Said a campus student, “I don’t have too much to do with campus life. When I think of the energy it takes to get to the Student Union, I usually opt out. It’s physically draining.” Extra time and energy is also required in many interpersonal relationships involving one or more people with physical limitations. Socio-cultural factors are also important. Saxton & Howe (1987, p. 2) observe, “it is not possible to separate the cold facts, the day-to-day reality of living with a disability from the cultural and social obstacles disabled women must face, including outright and indirect discrimination in education and employment.” Our focus here is upon the socio-cultural factors. We suggest that three aspects of the prevailing socio-cultural system are especially relevant to an understanding of the situation of women with disabilities: sexism, able-ism (disabilityism), and a third (our ‘plus factor’) that appears to relate in particular to women with disabilities. We think that these three factors impact social, educational and labor force participation (and are in turn impacted by low levels of participation). The consequences of these factors is stigma (Goffman, 1963), that “special and insidious kind of social categorization” (Coleman, 1986, p. 219) carrying with it “devalued status” (Becker & Arnold, 1986, p. 49). Of course, stigma shapes the behavior of non-stigmatized and stigmatized people, and it gives each a reason to avoid the other. Women in the USA (and elsewhere) have devalued status, and the same is true of people with physical disabilities. Indeed, there are similarities between the two. As Saxton & Howe (1987, p. xii) write, “there are many parallels between the oppression of women and of disabled people. Both groups are seen by others as passive, dependent, and childlike; their skills are minimized and their contributions to society undervalued.” Our surveys of university students clearly reveal that women with disabilities are in general viewed negatively, e.g. as passive and socially isolated. They are said to be sick and feeble, old and grey, childless and sexless. The comparisons with non-disabled women and disabled men are dramatic. To explore why disabled women are apparently more stigmatized than disabled men—even more than sexism and able-ism would lead one to predict— we turn to the female/disabled ‘plus factor.’ We suggest that three elements may be involved: the social inappropriateness of the disability’s cause, impaired nurturance, and despoiled beauty. Disability attributions. When a disability is observed, it is common for the observer to wonder about its cause. In general, there tends to be a negative tone to disability attributions. Clearly, the eighteenth century view that “the wages of sin were disease and death” (Turner, 1985, p. 219) still influences our own perspectives. And in particular, there are gender differences in these attributions. Our evidence suggests that observers tend to attribute the disabilities of males to external situational factors, whereas attributions with regard to the disabilities of females are more likely to focus on the person herself. There may

Women and disabilities 43 be a link between this pattern and ‘just world’ thinking, i.e. that some people (especially women?) get what they deserve (see Lerner, 1970). In one study, we asked 130 undergraduate students to provide an explanation for the condition of an imagined 45 year old man who uses a wheel chair. The responses often dealt with injuries at war, and sometimes work was mentioned. Accident associations were either general or concerned automobiles or sports. By contrast, no student provided military or job explanations for a similarly aged female, and only one mentioned a sports accident. (Men under 50 do suffer more injuries than women.) One explanation was offered for female wheelchair-users significantly more frequently that it was for their male counterparts: disease (or illness). This is especially important because some diseases are contagious, and degree of contagiousness is associated with negative reactions and avoidance behavior (Safilios-Rothschild, 1970; Sontag, 1978). As for accidents, general and automobile-related ones were frequently mentioned. But in contrast to the attributions for males, seemingly careless accidents (e.g. ‘falling down stairs’) were mentioned by a number of respondents as causes of females’ accidents. Nurturance. One component of sexism in American society is the expectation that women will be social caretakers, whereas men will do the ‘work’ (implicitly, paid work outside the home). In other words, women nurture—e.g. as ‘mother,’ ‘wife’ and ‘sexual partner.’ These are the same roles identified by Duffy (1981, p. 135) as reported by her disabled respondents that make them “feel most womanly.” What are society’s images and expectations for a woman who is disabled? With a sad expression on her face, one of our respondents said, “Disabled women are seen as children.” Another woman talked about an elderly image. That is, women with disabilities are seen as dependent and in need of caretaking; they cannot be the caretaker. Browne et al. (1985, p. 13) write, “Dependence and childishness are presumed to be the totality of our existence.” (See also Hannaford, 1985.) An important element in the discrimination is that many people treat women with disabilities (and to a lesser degree, disabled men) as if they were incapable of independence. Even parents sometimes talk about the disabled woman as if she were not present or responsible enough to participate. Our study of the free associations of undergraduate students, added to the work of others, supports the view that these discriminatory images remain strong in the USA. In our study, we asked each student to write down three verbal associations with ‘disabled woman’ and, earlier or later, ‘woman’ (in addition to other concepts). The contrast between the responses is sharp. Among the associations with ‘woman’ are sexuality (e.g. soft, lovable, orgasm), work (e.g. intelligent, leader, career), or the mother or wife roles (e.g. married, mom, child bearer). But for ‘disabled woman,’ there are rarely such associations. Rather, these women lead respondents to have such associations as old and feeble. Let us look further at three nurturing roles.

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Being a mother: “If a woman cannot have children,” said one of our respondents, “that makes her less than a woman.” The role of mother “is at the heart of women’s lives” (Thompson, 1988, p. 4); it incorporates positive social recognition, and it is one of the few such roles available to young, poor women. In our interviews with disabled women, we often heard reports that physicians, parents and others told the women that they should not become pregnant. Some were told to have a tubal ligation. There was little or no preparation in special education classes or rehabilitation programs for the role of mother. Said one respondent, “Many people don’t accept the idea of a disabled woman having a child.” And another: “Even my family would be appalled if I had children.” Some courts agree; in a well-publicized recent case, Californian Tiffany Callo, who uses a wheelchair because of cerebral palsy, was forced to give up her two sons to adoption. Many of our respondents were college educated women; yet some of their relatives and friends could not envision these women as mothers. Of course, there is a powerful positive side to motherhood for most women, certainly including women with disabilities. There are challenges and adjustments, and the special feeling of achievement. (See Shaul et al., 1985, pp. 139–140.) Said one respondent, “My mothering worries everybody else. Even my own mother thinks I should never have children. But it sure doesn’t worry me. It’ll take me longer to do things, but I’ll do it.” Being a wife: What is a ‘wife’? In western society, it is often seen as a helping role that combines, among other things, being a domestic servant, nurse maid, social secretary, and provider of sexual services. Perhaps everyone could use a ‘wife’ (including, that is to say, women). But it may be hard for some women with disabilities to meet the expectations of the stereotypical ‘wife.’ After all, some may not be able to clean the house or talk over a regular telephone. A respondent commented: “There is a big difference between a disabled husband and a disabled wife. A disabled husband needs a wife to nurture him, but a disabled wife is not seen by society as capable of nurturing a husband who is not disabled.” Furthermore, a husband is not expected to be the care giver. “Until recently, I was engaged,” said a respondent. She continued: “His family had a difficult time seeing me being able to take care of him. . . . They saw him in a constant state of doing for me.” That is perhaps why so many women who become disabled have their marriages end in divorce or separation. The challenge of mutual understanding is why some women with disabilities develop relationships with males who are disabled. “When you date someone else with a disability,” a student commented, “that person understands the struggles. . . . It’s easier to have a relationship.” Being a sexual partner: Many men dream of a Playboy-type sexual partner: a beautiful body performing a variety of sexual services. However, few men think of a visibly disabled woman as a sex object. Indeed, there may for many people be a taboo against such an intimate relationship (see Hahn, 1981, p. 224). The July 1987 issue of Playboy did feature Ellen Stohl, a mobility impaired woman; but the nude photographs did not reveal her disability.

Women and disabilities 45 For the woman with a disability, sexuality is too often denied. “Indeed, there is often the assumption that she does not have a sex life, or in fact does not want one” (Hannaford, 1985, p. 78; see also Hahn, 1981, and Morris, 1989). Many parents think this way too (see Rousso, 1988). Even if a woman had been sexually active before impairment, that aspect of her person is thought to be lost. Said a respondent, “It is sad that part of your womanhood is supposed to end with a disability.” Referring to the boyfriend she had before an impairing accident, Anderson (1985, p. 276) writes, “I had to give him up. . . . I felt I could not give him what he needed. I felt that my sex life was over.” Duffy (1981, p. 95) put it well: “Hormones know no handicap.” Of course, a physical disability may well impair some aspects of sexual functioning (see Morris, 1989, pp. 89–92) and require adjustments. Commented a respondent with cerebral palsy, “There’s nothing at all unusual about my sexuality. I really enjoy it.” Physical attractiveness. Beauty, writes Banner (1983, p. 9), is “a special category of women’s experience.” “To be worthy,” write Sanford & Donovan (1981, p. 371), “we are supposed to be tall and extremely thin, with large womanly breasts but boyish hips, and flawless in our facial features.” And Bogle & Shaul (1981, p. 92) write: “The media sex symbol of the day is an impossible standard for any woman to live up to, but disability places you at an even greater disadvantage. If you spend most of your time in a wheelchair, and if you wear braces, and if you have a scoliosis, no matter what you do, you’re not going to look like Cheryl Tiegs or Marilyn Monroe.” Unattractiveness and disability are equated in the minds of some observers as well as some women with a disability. In one of our surveys, we found that the concept ‘woman’ is often linked with associations of beauty, whereas ‘disabled woman’ evokes such associations as ‘ugly’ and ‘unpleasant.’ The woman with a disability may well have a poor body image, and that in turn has been linked with a fear of rejection that leads to avoiding social encounters, intimate relationships, and employment opportunities. Reflecting on her own experience, Joyce (1990, p. 9) comments: “Amputees, especially adolescents and women, may feel mutilated and unattractive.” (See also Hutchinson, 1988.) The social and economic consequences of physical attractiveness or unattractiveness are profound. A major summary of research (Patzer, 1985, p. 1) observes: Physical attractiveness is the most visible and most easily accessible trait of a person. Physical attractiveness is also a constantly and frequently used informational cue. . . . Generally, the more physically attractive an individual is, the more positively the person is perceived, the more favorably the person is responded to, and the more successful is the person’s personal and professional life. The less physically attractive person is perceived to be relatively unintelligent, insensitive, uninteresting, unsociable, lacking in poise, unexciting, sexually

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cold, sad, passive, aloof and rigid, and is less likely to be preferred for a working, dating, or marriage relationship. (The unattractiveness even ‘radiates’ to a companion.) Suggestive of the impact is that physical changes can have a significant impact. “Some parents, who gave their children with Down Syndrome cosmetic surgery,” reports Asch (1984, p. 53), “have found that their children’s social and intellectual skills improved once they no longer carried the stigma of the ‘Mongoloid appearance.’ ”

Self-concept “I don’t have any regrets at all about being disabled,” one of our respondents asserted. We think her attitude is an exception to the rule. More typical is Johnson’s (1986, p. 28) reflection, “It has not felt good to be disabled and a woman.” Low levels of participation and a culture embedded with sexism, ableism, and the female/disabled ‘plus factor’ obviously are likely to have a powerful impact upon the self-concept of many disabled women. And for those impaired after birth, there is the added impact from the experience of becoming disabled and the sense of relative deprivation. Saxton & Howe (1987, p. 1) write, “The loss of body function becomes a loss of sense of self. . . .” Poems in their edited volume refer to the body as “going away” and “changing into a stranger.” Self-image. Women with disabilities learn about, and too often accept, the image held of them by members of the larger society. As Saxton & Howe (1987, p. 105) put it, “. . . being targets of incorrect assumptions, stereotyped notions, and invalidating messages about who we are, sometimes even from our closest family and beloved friends, we begin to believe they are true; we internalize the oppression.” Beginning in early childhood, the person with a disability may be subjected to comments and behaviors that are damaging to their self-image. “I was always made fun of in school,” a respondent recalled. Browne et al. (1986, p. 129) write, “As disabled children, we often become the scapegoats for an already exhausted and strained family system, bearing the burdens of the family’s frustrations and resentments. . . . We may come to believe that we are guilty for being disabled and for causing the family trouble.” Alternatively, the guilt may be felt by family members who think they are to blame for the physical impairment; such guilt often leads to overprotection and consequently a denial of opportunities for independence. “Mothers of disabled kids are definitely overprotective,” said a respondent in a rueful tone. Self-esteem is obviously affected. Alas, “Our level of self-esteem affects virtually everything we think, say and do. It affects how we see the world and our place in it . . .” (Sanford & Donovan, 1984, p. 3). Self-esteem is comparatively low among women, and it appears to be especially low among women with disabilities. A respondent commented, Disabled women have a self-image that accepts the image the rest of the world has: that they cannot do, and they shouldn’t even attempt to do. So

Women and disabilities 47 they don’t try or only try half-heartedly to battle the obstacles. . . . They say, ‘well, okay.’ . . . And it is so hard to fight the prejudices in the job market or even those of your family. So she passively sits back. The prevailing social image of the disabled woman is transmitted to her by the most important people in her life: her teachers, medical professionals, and parents (see Duffy, 1981; Yuker, 1988). We often heard from our respondents that these significant others sent verbal and non-verbal messages fully compatible with the sexism and able-ism of the larger society. Wagner (1985, p. 60) writes that people were too quick to help. “They rushed in to complete tasks I had begun, or started others before I had a chance. I felt like it wasn’t acceptable for me to proceed my own way—that somehow I wasn’t competent or whole any more.” Note that the psychological impact of such behavior may be magnified (or the behavior even imagined) by the disabled woman who tends to find confirming evidence of her expectations (see Kleck & Strenta, 1980, p. 864). Teachers from pre-school through higher education may transmit stigmalinked views of women with disabilities. A professor told one of our graduate student respondents, “All you can be is a beautician. Don’t expect anything more . . . you don’t have any possibility for success.” This student is now completing her Ph.D work. As for medical professionals, their differential behavior towards males and females has often been observed. For instance, Wallen et al. (1979) found that physicians working with female patients tend to provide them with inappropriate information, to emphasize psychological compared with physical diagnoses, and to be pessimistic about recovery. Such behavior has obvious implications for the well-being of disabled women. The parental message, in the words of one respondent, is that “we want you to stay here [at home] until you’re old and grey.” She continued, “I’m glad I was able to break out.” Borsay (1990, p. 115) argues that “the delivery of care to all relatives is strongly allied to the motherhood model. Consequently, assistance is framed in terms of the immature child.” She continues, “However inadvertently, therefore, the motherhood model turns family care into a form of social control, in which disabled adults are stigmatised by being treated as children.” Of course, these circumstances represent potential challenges. “We cope on a very basic level that gives us pride in our being. We confront issues of helplessness, autonomy and control daily and our struggle helps us grow” (Wagner, 1985, p. 61). Self-selected role(s). Because of the prevailing low levels of participation, the low expectations on the part of others, and poor self-concepts, some observers have characterized women with disabilities by using terms such as ‘social indefinition’ and ‘rolelessness.’ We think that this is far from accurate. A useful starting point is the suggestion by Parsons (1951) that there is a “sick role.” Among the aspects of this role are exemption from normal responsibilities and the need to be taken care of. Clearly, the prevailing view of women with disabilities is based

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in part on an imposition of the idea of ‘sick’ upon people who are ‘disabled.’ After all, we have seen that women with disabilities are thought not to be able to function as wife, mother, or sexual partner, and to be in need of nurturing. Given the socio-cultural situation that directs sick role expectations at women with disabilities, our observations lead us to conclude that there are two modal responses: acceptance or rejection of this role. Acceptance minimizes socio-cultural participation, and dependency may become the woman’s culturally acceptable life style (DuBrow, 1965). If one is exempted from normal social roles, the stigmatized condition gains greater predominance. Coleman (1986, p. 223) argues that the negative identity “inhibits the stigmatized person from developing other parts of the self.” Acceptance of the sick role may be more common among women with disabilities. Fine & Asch (1985, pp. 8–9) suggest that women, compared with men, are more likely to internalize social rejection and to identify themselves as ‘disabled.’ In our interviews, respondents often referred to differences between disabled men and women. “It’s easier for a man to push someone out of his path,” said one. By not pushing, said another, many disabled women commit “mental suicide.” And from another: “Males are tougher. They don’t want the disability to get to them. They want it, and they want it now . . . I have trouble making demands.” Responses from community residents and university students indicate that weakness, passivity, and dependence are expected of women with disabilities. Rejection of the sick role, by contrast, leads to efforts to accept responsibility and achieve independence as well as to a greater variety of roles in the social, educational and economic systems. Perhaps such women can be said to have the self-selected role of ‘challenged’ disabled woman—or even challenged woman. Weinberg (1988, p. 151) writes, “Some people who embraced their disability saw the disability as a challenge, and meeting that challenge provided them with an extra feeling of satisfaction and confidence.” A sizeable minority of our respondents were challenged women. Said one, “I am very conscious of my role as a disabled woman.” For her, it is not a matter of women’s roles or disabled roles; the two are now fused. “It is my role to show what a ‘disabled woman’ can do. . . . Aren’t disabled women amazing!” Clearly, being disabled was energizing to her. Another respondent reflected, “Maybe I would be an ordinary girl, married. But because of my impairment, I want to compensate for it.”

Conclusion All women with disabilities, challenged or accepting, appear to be faced with two handicaps plus: they confront sexism, able-ism, and the handicapping female/disabled ‘plus factor’ that is uniquely theirs. This socio-cultural situation is obviously not without consequences; our research provides strong warrant for the view that, on average, women with disabilities have relatively low levels of participation as well as relatively poor or limiting self-concepts.

Women and disabilities 49 The relationships among each pair of the three factors (participation, sociocultural system, and self-concept) are, we think, bidirectional; that is, circular causation exists. However, the research methods that we have employed at this stage of our work makes our views no more than suggestive working hypotheses for the future. Clearly, these are promising lines of inquiry in need of multifactor longitudinal research. Although our work has been guided by a triangular view that includes participation, socio-culture, and self-concept, we believe that this triangle is really part of a more complex set of relationships involving both the individual and the community. The primary individual-level clusters of factors include resources (e.g. money and information), physical condition (e.g. degree of impairment), participatory behavior, and attitudes towards self and community; and at the community level, they include resources (e.g. the health care system), the physical environment (e.g. access barriers), cultures and subcultures, and patterns of behavior. Each factor, we think, impacts upon all of the others in a complex network of circular causation. To take but one example that goes beyond our reported work, it appears that poverty leads to poor health and poor health care, poor health care contributes to poor health, poor health increases the chance of physical disability, and disabilities make poverty more likely. Thus Heyman et al. (1990, p. 182) write: “The class/handicap relationship is probably due to both handicapped people achieving lower socio-economic status and lower status being associated with conditions which cause handicapping conditions.” Clearly, there are powerful forces of circular causation at work. And just as clearly, the agenda for scholars working in the field of sex and disability is complex, demanding, and challenging to us all. Of course, the most important item on the agenda must be to make much of the research of no more than historical interest by eliminating the socio-cultural and other barriers to equitable participation and empowering self-concepts.

Acknowledgements We wish to thank Jack McNeil of the US Census Bureau for facilitating our acquisition and use of the special SIPP survey, Nina M. Hill for providing us with the Harris data tape, Alicia Seegrist for SAS help, Robin Miller for expert library and other assistance, and the many women in the disability community whose cooperation and support made our efforts possible. Thanks also to Adrienne Asch, whose ideas on nurturance have been especially helpful; and to the provocative comments of our anonymous journal reviewers. This project is in part supported by grants from the Graduate School and the College of Human Ecology of the University of Maryland at College Park.

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Note 1 The quotations are from the transcriptions of interviews the authors conducted with disabled women.

References Altman, Barbara (1985) Disabled women in the social structure, in: Susan E. Browne, Debra Connors & Nanci Stern (Eds) With the Power of Each Breath: a disabled women’s anthology (Pittsburgh, PA, Cleis Press). Anderson, Lois (1985) The Lois Anderson story, in: Susan E. Browne, Debra Connors & Nanci Stern (Eds) With the Power of Each Breath: a disabled women’s anthology (Pittsburgh, PA, Cleis Press). Banner, Lois W. (1983) American Beauty (New York, Knopf). Becker, Gaylene & Arnold, Regina (1986) Stigma as a social and cultural construct, in: Stephen C. Ainlay, Gaylene Becker & Lerita M. Coleman (Eds) The Dilemma of Difference: a multi-disciplinary view of stigma (New York, Plenum). Bogle, Jane Elder & Shaul, Susan L. (1981) Body image and the woman with a disability, in: David G. Bullard & Susan E. Knight (Eds) Sexuality and Physical Disability: personal perspectives (St Louis, MO, C. V. Mosby). Borsay, Anne (1990) Disability and attitudes to family care in Britain: towards a sociological perspective, Disability, Handicap & Society, 5, pp. 107–122. Browne, Susan E., Connors, Debra & Stern, Nanci (1985) With the Power of Each Breath: a disabled women’s anthology (Pittsburgh, PA, Cleis Press). Bureau of the Census (1984) Survey of Income and Program Participation, SIPP84-R3 (Washington, DC, US Department of Commerce). Coleman, Lerita M. (1986) Stigma: an enigma demystified, in: Stephen C. Ainlay, Gaylene Baker & Lerita M. Coleman (Eds) The Dilemma of Difference: a multidisciplinary view of stigma (New York, Plenum). Deegan, Mary Jo & Brooks, Nancy A. (Eds) (1985) Women and Disability: the double handicap (New Brunswick, NJ, Transaction). Dubrow, Arthur L. (1965) Attitudes towards disability, Journal of Rehabilitation, 31(4), pp. 25–26. Duffy, Yvonne (1981) All Things Are Possible (Ann Arbor, MI, A. J. Garvin). Ellien, Valerie (1983–84) Women and disability: an international perspective, Rehabilitation World, 7(4), pp. 9–13. Fine, Michelle & Asch, Adrienne (1985) Disabled women: sexism without the pedestal, in: Mary Jo Deegan & Nancy A. Brooks (Eds) Women and Disability: the double handicap (New Brunswick, NJ, Transaction). Fine, Michelle & Asch, Adrienne (Eds) (1988) Women with Disabilities: essays in psychology, culture, and politics (Philadelphia, PA, Temple University Press). Goffman, Erving (1963) Stigma: notes on the management of spoiled identity (Englewood Cliffs, NJ, Prentice Hall). Hahn, Harlan (1981) The social component of sexuality and disability: some problems and proposals, Sexuality & Disability, 4, pp. 220–233. Hanna, William (1986) Women with disabilities: free associations and attributions (unpublished manuscript). Hanna, William et al. (1980) Equity for the Disabled (Bethesda, MD, H&HA).

Women and disabilities 51 Hannaford, Susan (1985) Living Outside Inside: a disabled woman’s experience (Berkeley, CA, Canterbury). Heyman, Bob et al. (1990) Social class and the prevalence of handicapping conditions, Disability, Handicap & Society, 5, 167–184. Hutchinson, Marcia Germaine (1989) Transforming Body Image: learning to love the body you have (Freedom, CA, Crossing Press). Johnson, Mary (1986) Ending the aloneness, Disability Rag, March-April, pp. 28–29. Joyce, Stephanie (1990) My lost foot: adjusting after an amputation, Washington Post Health, October 23, p. 9. Kleck, Robert E. & Strenta, Angelo (1980) Perceptions of the impact of negatively valued physical characteristics on social interaction, Journal of Personality and Social Psychology, 39(5), pp. 861–873. Lerner, M.J. (1970) The desire for justice and reactions to victims, in: J. Macauley & L. Berkowitz (Eds) Altruism and Helping Behavior (New York, Academic Press). Louis Harris & Associates (1986) The ICD Survey of Disabled Americans (New York, International Center for the Handicapped). Morris, Jenny (1989) Able Lives: women’s experience of paralysis (London, Women’s Press). Parsons, Talcott (1951) The Social System (Glencoe, IL, Free Press). Patzer, Gordon L. (1985) The Physical Attractiveness Phenomena (New York, Plenum). Rousso, Marilyn (1985) Daughters with Disabilities: defective women or minority women, in: Michelle Fine & Adrienne Asch (Eds) Women with Disabilities: essays in psychology, culture, and politics (Philadelphia, PA, Temple University Press). Safilios-Rothschild, Constantina (1970) The Sociology and Social Psychology of Disability and Rehabilitation (New York, Random House). Sanford, Linda T. & Donovan, Mary E. (1984) Women and Self-esteem: understanding and improving the way we think and feel about ourselves (Garden City, NY, Anchor/ Doubleday). Saxton, Marsha & Howe, Florence (Eds) With Wings: an anthology of literature by and about women with disabilities (New York, Feminist Press). Shaul, Susan, Dowling, Pamela & Laden, Bernice F. (1985) Like other women: perspectives of mothers with physical disabilities, in: Mary Jo Deegan & Nancy A. Brooks (Eds) Women and Disability: the double handicap (New Brunswick, NJ, Transaction). Sherr, Rose Lynn & Write, Beatrice A. (1985) Foreword, in: Mary Jo Deegan & Nancy A. Brooks (Eds) Women and Disability: the double handicap (New Brunswick, NJ, Transaction). Siller, Jerome et al. (1967) Studies in Reactions to Disability, II: attitudes of the nondisabled toward the physically disabled (New York, New York University School of Education). Thompson, Linda (1988) Feminist resources for applied family studies, Family Relations, 37, pp. 1–6. Turner, Bryan S. (1985) The Body and Society: explorations in social theory (Oxford, Basil Blackwell). Wagner, Marjorie (1985) A four-wheeled journey, in: Susan E. Browne, Debra Connors & Nanci Stern (Eds) (1985) With the Power of Each Breath: a disabled women’s anthology (Pittsburgh, PA, Cleis Press). Wallen, Jacqueline et al. (1979) Physician stereotypes about female health and illness: a study of patient’s sex and the informative process during medical interviews, Women & Health, 4(2), pp. 135–146.

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Weinberg, Nancy (1988) Another perspective: attitudes of people with disabilities, in: Harold E. Yuker (Ed.) Attitudes toward Persons with Disabilities (New York, SpringerVerlag). Yuker, Harold E. (1988) Attitudes toward Persons with Disabilities (New York, SpringerVerlag).

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Disabled people’s self-organisation A new social movement? Tom Shakespeare University of Northumbria, Social Welfare Research Unit

Abstract This article will examine the ways in which disabled people, world-wide but especially in the USA and Britain, have emerged as a coherent political force in the last 20 years. Furthermore, in looking at disability from the perspective afforded by new social movement arguments, I wish to explore the implications of this development: the fact that disabled people in the 1990s are ‘doing it for themselves’, and to develop comparisons between the disabled people’s movement and the movements of black people, women, and gays and lesbians, for autonomy, recognition and resources. I will suggest that new social movement theory, while useful in the analysis of environmentalism, post-materialism, and some varieties of nationalism, cannot fully grasp the essence of liberation politics.

Introduction Recent decades have seen disability become a hotly contested issue: in the political arena, with the development of the disabled people’s movement, and in academic debates. Political interventions have centred on issues of discrimination and segregation, moving beyond the traditional concerns about medical and welfare provision to focus on areas such as anti-discrimination legislation; the role of charity and cultural representation; segregation in transport and education; and innovations to increase autonomy (through centres for independent living). The academic debate has developed the concept of the social model, originally initiated within the Union of Physically Impaired against Segregation (UPIAS), and seen a conflict between the approaches of disabled and nondisabled researchers. It is important to consider these developments as examples of praxis, the unity of theory and practice within struggle. But because of the priority afforded to achieving change, there has been little space for considering the nature of the movement itself, historically and politically, and the significance of new definitions of disability for the self-identity of disabled people. This article attempts to contribute towards this type of analytical self-awareness, using existing sociological theories about new social movements.

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Disability and direct action There are now several empirical histories of the disabled people’s movement, both internationally and in Britain (Pagel, 1988; Driedger, 1989). These are useful beginnings, but are nevertheless rather brief descriptions, with little consideration of the causal factors involved in the expanding consciousness of disabled people. Rather than repeat existing material, I will point to parallels and differences between the disability movement in Britain and North America and other liberation campaigns, before contextualising disability within new social movement theory. There are significant differences between the disability movements in Britain and the USA. Clearly, the USA has a different tradition of protest and social reform from Britain and much of western Europe. The absence of a developed welfare state; the strong emphasis on individual rights, expressed in a written constitution; the fullest development of the free market and competitive values; the virtual absence of collectivism and the organised labour movement, are all important factors in explaining the different developments of disabled people’s politics. One of the main inspirations of the movement in the USA was the example of the civil rights campaigns and women’s movement of the late 1960s. Another was the widespread injury caused by the war in Vietnam, and the increase in the numbers of young disabled people. A large element of the movement in North America has stemmed from consumerism and self help: for example, in the independent living centres this emphasis plays a large part. This is a particularly US tradition, of self-reliance and of individual rights. Many writers focus on consumer involvement whereas British approaches would stress political autonomy and democratic participation, not the market. US disability campaigns focus on admitting disabled people to wider society, demanding the extension of existing social rights to them, as a group. In Britain, although this citizenship stress is an important (and developing) emphasis, there has been a radical rejection of social normality, and a structural stress on changing the system that produces disability. In Britain, as in North America, direct action is a very important part of the disabled people’s movement: for example, the Campaign for Accessible Transport (CAT) and the Campaign against Patronage (CAP). Both groups have organised highly visible and controversial actions—for example, a demonstration in London’s Oxford Street, which involved wheelchair users chaining themselves to buses, and regular blockades of television fund-raising spectaculars such as Telethon and Children in Need. Such mobilisations are reminiscent of the tactics of the women’s suffragists in the years before the First World War, but also of the struggles of the 1960s: there is an unsubstantiated story that New York wheelchair users enlisted the support of the Weather Underground to dynamite undropped kerbs in the early years. The civil rights movement was influential for subsequent liberation struggles not just because of the content of demands, but also through the techniques and manner of struggle:

Disabled people’s self-organisation 55 When traditional legal channels have been exhausted, disabled persons have learned to employ other techniques of social protest such as demonstrations and sit-ins. (DeJong, 1983, p. 12) This development is important not just instrumentally, in the securing of specific changes and reforms, but because direct action challenges popular perceptions of disabled people, and empowers and inspires participants. Aldon Morris’s history of the early US civil rights movement suggests its importance for black people was two-fold: One, it was the first time that large masses of blacks directly confronted and effectively disrupted the normal functioning of groups and institutions thought to be responsible for their oppression. The hallmark of the modern civil rights movement is that these mass confrontations were widespread and sustained over a long period of time in the face of heavy repression. Two, it was the first time in American history that blacks adopted nonviolent tactics as a mass technique for bringing about social change. (Morris, 1984, p. xi) This comment could be applied, for example, to Stop Telethon demonstrations, and to actions against inaccessible transport. The latter is a form of segregation not so divorced from the segregated buses which were one of the first targets of the civil rights movement: Buses became the first target of the movement because members of the black community had begun to see bus discrimination not as a private misery but as a public issue and a common enemy. (Morris, 1984, p. 48) Morris sees the direct action orientation as emphasising the ‘here and now’. This immediacy seems obvious in the urgency of contemporary disabled people’s struggles, and through the impact of direct action on the streets, as non-disabled people are forced to confront their stereotypical attitudes: Jenny Morris has written of the feelings of power that collective action engenders: The obvious challenge that we were mounting to people’s assumptions was also a source of my sense of power. Indeed, each time I had to explain to a non-disabled friend why I was going on such a demonstration, I was very conscious of the way that this issue challenges the root of our oppression and that even to explain my motivations very briefly brings people up short against the core of their own prejudice. (Morris, 1991, p. 191)

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Direct action has a number of important elements. It is a way of focusing attention on the institutions and environments that create disability: the inaccessible transport, the demeaning television charity spectaculars. It is an overtly political act, showing that disability is a matter of social relations, not medical conditions. It is a chance for disabled people to ‘do it for themselves’, without the help or participation of non-disabled people, thus prefiguring the claims of the disability movement to autonomy, independence and power. It is an empowering process for participants, creating a sense of solidarity, purpose, and collective strength which enhances and develops the movement. When the CAT blockaded Oxford Street, and on other demonstrations, the police force has found it difficult to deal with wheelchair users and other mobility impaired people. Proceedings against arrested protesters at Horseferry Road Magistrates Court had to be terminated, as the building was inaccessible to disabled people. These ramifications of direct action protest illustrate the way style and method can reinforce the message and content of the campaign. Popular opinion cannot come to terms with disabled radicalism, preferring to think disabled people are happy with their situation. In an editorial coinciding with the Oxford Street demonstrations, the Times leader (29 September 1990) suggested that, while everyone was sympathetic to disabled people (after all, anyone could become disabled, and it was no one’s fault), the militants must be careful not to alienate public opinion: Militancy, unlawful demonstrations, and the disruption of city life may relieve the feelings of the disabled. But such tactics will eventually alienate the public support on which the disabled have to rely. Of course, this fairly common opinion indicates that many people have still not understood that the basic claim of the disability movement is that disability results from social relations, not impairment, and therefore society does not merely face responsibilities towards ‘the disabled’ but is culpable in creating disability in the first place. In the recent Institute of Public Policy Research (IPPR) report on Equal Rights for Disabled People: the case for a new law, Oliver & Barnes summarise recent developments as follows: The move towards self-organisation has prompted increasing numbers of disabled people to adopt a shared political identity, which in turn has helped to build a new mood of confidence. Disabled people no longer ask for change but demand it. They are prepared to use a whole range of tactics in pursuit of their demands, including direct action and civil disobedience. (Bynoe et al., 1991, p. 12) These features of the disability movement—a shared political identity, the use of direct action—indicate the importance of developing parallels with other social movements. In 1976, Safilios-Rothschild suggested,

Disabled people’s self-organisation 57 The time may be ripe for the disabled to generate a social movement patterned after the at least partially successful examples of the Black Movement and the Women’s Movement. (Safilios-Rothschild, 1976, p. 45) Each liberation struggle was the work of the subject peoples themselves, be they black, gay or women: Perhaps the most striking thing about feminism is the extent to which it has been a movement of women and not just for women. (Banks, 1986, p. 106) Political change did not rely on the lobbying of professionals, or the use of electoral methods. Each of these constituencies have historically been disempowered: black people and women being disenfranchised totally, others being electorally invisible. Disabled people, too, have been disenfranchised: several writers have shown the obstacles to registration and voting, let alone effective political participation. Oliver (1990) argues that conventional party politics has failed disabled people, who have become a marginalised underclass. The solution has been grass roots campaigning activity, self-organisation, direct democracy, and direct action: inspiring struggles, relying on passion as much as logical persuasion, as Olive Banks argues for first-wave feminism: During this period women and men were stirred not only by the intellectual arguments put forward but even more, perhaps, by the emotional impact of the struggle itself. (Banks, 1986, p. 140) Thus there were the civil rights marches, the Stonewall Riot, the Miss World demonstration, and more recently, Greenham Common, Telethon, Outrage. All these campaigns have implicitly worked through a wider conception of politics, classically encapsulated in the feminist slogan ‘The personal is political’.

Identity and group consciousness Above, I have made reference to disability identity in connection with the empowering role of direct action. Much academic work has discussed disabled people’s identity, but the majority has focused more on ‘identifying’ disabled people, through empirical or clinical investigation, taking disability to refer to medically assessable impairment and functional limitation. I am concerned with identity in a political sense: with identifying as part of an oppressed group, with part of a cultural minority. This process of identification seems the reverse of what William Ryan called “blaming the victim” because it is about converting private woes into

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public wrongs. It is about ‘the victim’ refusing that label, and instead focusing attention on the structural causes of victimisation. It is about the subversion of stigma: taking a negative appellation and converting it into a badge of pride. Recent Anglo-American homosexual politics show a similar process, as gay men and women take on the word ‘queer’, traditional insult, and make of it a strengthening identifier, referring to the new tendency of direct action, pride and political struggle. Similarly, many disabled activists and performers would use the word ‘cripple’, or ‘crip’, in a way which they would find offensive if nondisabled people adopted it. In both these cases, the words refer to a wider development, which is the assertion of group identity in the face of oppression, constructed through a political and cultural struggle focused on pride. And this pride is about the assertion of a positive identity, personally and collectively, in the face of prejudice and discrimination. The key to this development is that people are ‘doing it for themselves’. The British Council of Organisations of Disabled People (BCODP) and similar disabled people’s organisations came into being against existing charities and pressure groups which worked for disabled people, on their behalf. BCODP said that this must be the action of disabled people themselves, mass action rather than élite action. This dichotomy is familiar from previous struggles. For example, the National Association for the Advancement of Coloured People was a white-dominated organisation, based in the US, for much of its early history. It was the Southern Christian Leadership Conference that was formed and controlled by black people, and which subsequently took over the leadership of the struggle, itself later superseded to an extent by more radical black consciousness groups. In contemporary British gay politics there is the conflict between the political strategies of the Stonewall Group and Outrage: the former is an élite group who lobby for change at the top (tea with John Major); the latter is a radical, participatory, direct action group trying to change popular consciousness, not just laws. I conclude firstly, that liberation struggles have to be led and controlled by the colonised group itself, and secondly, that liberation must involve the most widespread possible action and mobilisation, rather than mere changes in élites or legislation: the latter would parallel a coup d’état, rather than the intended revolution. Ethel Klein makes a distinction between the feminist sympathy of men (an “abstract, ideological commitment to equality”) and the feminist consciousness of women (an “internalised political perspective derived from personal experience”): . . . feminist support based on abstract commitments to social justice and equality is diffuse and has a relatively weak and short-term impact on people’s political choices. In contrast, support based on personal experience and solidarity with the experiences of other women, on feminist consciousness, fosters a vigilant commitment to the pursuit of sex equality. (Klein, 1984, p. 7)

Disabled people’s self-organisation 59 So, identifying as a member of an oppressed group and organising to effect social change are critical. In Britain, the explicitly political character of the struggle, and the extent to which it is an ‘indigenous’ struggle, has been recognised from the start, in the UPIAS/Disability Alliance split. In the USA, this issue was also being recognised, though perhaps more cautiously: DeJong concludes rather tentatively. One of the most vexing issues in the future will be the role of able-bodied persons in the movement. In some quarters, it is strongly felt that only disabled consumers should hold significant leadership positions. The issue finds a parallel in the civil rights movement, at the stage when whites were asked to relinquish their leadership roles in black advocacy organizations. (DeJong, 1983, p. 26) Irving Zola makes the claim more strongly: I do not claim that no one else can help or understand us; rather, I would argue that, as with women and blacks, we have reached that point in history, where having been there is essential in determining where to go. (Zola, 1983, p. 57) The latest British developments in this ‘indigenous’ tendency came at the 1992 Researching Disability Conference, when disabled people told non-disabled researchers that they had no right to be researching the disability experience, showing that even the academic study of disability has felt the politicising effects of the movement. Is this development valid? Can only disabled people speak for other disabled people? Disability is less of a unitary concept than race and gender: the experiences of people with visual impairment, restricted growth or spinal injury will differ markedly, and factors such as the onset of the condition will also influence the experience, as well as the obvious dimensions of race, class and gender. It is important not to ignore differences between impairments, despite the tendency of writers to gloss over difference in favour of the totalising and unifying role of oppression. Clearly, all disabled people face a common exclusion, prejudice and discrimination, and the vast majority share a condition of poverty. But beyond this, there are variations. Can I, as a person with restricted growth, effectively speak for or write about someone with cerebral palsy or visual impairment? I can identify with the basic social experience, but the details can be no clearer to me than they would be to anyone else, disabled or not. If a nondisabled person cannot describe or represent my experience, then can I describe or represent the experience of someone with a different impairment? Does this undermine either the claim for disabled unity, or the denial of a role to nondisabled people? I think not, on the basis that the social oppression is the most immanent aspect of the experience, but the issue of advocacy and identity is rather more confused than has so far been suggested.

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The crucial issue regarding identity is the process whereby individual people with impairment come to recognise themselves as disabled, focusing on the social oppression which is basic to that condition. People are socialised into particular ways of viewing disability, which are based on individualised and medicalised attitudes. Disability is widely seen as individual medical tragedy, by disabled people as much as by non-disabled people. This problem parallels the experience of other subaltern groups: for example, there is a wide Marxist literature on ‘false consciousness’, whereby proletarians fail to recognise the true nature of the social relations which render them powerless and alienated, and seek individual explanations, or have recourse in religion, or perhaps nationalism and other divisionary ideologies. Feminist writers have used psychoanalytical concepts in the discussion of ‘internalised oppression’, whereby women absorb the patriarchal world view, and hold discriminatory attitudes to themselves and other women. Here, I wish to focus on identity formation as a part of the growth of group consciousness which leads to social movements: collective political action by subaltern groups. Ethel Klein highlights the issue when she argues: Having a hard life and being a member of an exploited group does not in itself lead to political unrest. People often blame themselves for their difficulties. Only when they see that their problems are shared by other people like them, the group, can they attribute the source of their concerns to social conditions, such as discrimination, and look to political solutions. (Klein, 1984, p. 2) She isolates a three stage process of political consciousness, from her study of the women’s movement. First, affiliation, through a process of group membership and sharing of interests; secondly, a rejection of traditional definitions for that group’s status in society; finally, Personal problems become political demands only when the inability to survive, or to attain a decent life, is seen as a consequence of social institutions or social inequality rather than of personal failure, and the system is blamed. (Klein, 1984, p. 3) Clearly, these three steps are demonstrated in the development of the disabled people’s movement. However, it may be more difficult for people with impairment to identify as disabled, as socially oppressed, than it is for women, blacks, or gays. The oppression is couched in terms of paternalistic support and charity. The dominance of professionals is well-nigh total. The very real element of physical impairment restricts activity, and reinforces ‘natural’ explanations of disability. The possibilities of people with various impairments coming together in a political struggle are reduced by the tendency of medicine and welfare to arbitrarily

Disabled people’s self-organisation 61 divide up the constituency: to separate the old from the young, to segregate people with different physical conditions, who nevertheless share similar social experiences. And the down-side of the disability movement, made more understandable by factors such as those just enumerated, is that it does not reach out to the total constituency of disabled people. It has proved less successful in developing positive identity and group consciousness beyond the relatively active, relatively young, middle-class elements. It is rare for this to be specifically acknowledged: because critics are always eager to undermine the movement, it has become difficult to make such criticisms from within it. In the USA, there has been more openness: Notably absent from the movement’s constituency are older persons with severe physical impairments resulting from strokes or other degenerative conditions. While the movement’s philosophy may have direct relevance to older disabled persons, the movement has focused its concern elsewhere. (DeJong, 1983, p. 6) While the movement in Britain is far more representative, there are some similar tendencies. Age-wise, it has tended to be skewed towards younger people, whereas the distribution of impairment in the population is overwhelmingly towards older people, especially women. Only recently have women’s voices been explicitly recognised within the movement, or those of black and Asian disabled people. Part of the reason for the difficulties the British movement has had in reaching beyond its core group, has been the tendency to downplay the role of impairment, of the physical condition. Given that the majority of unpoliticised disabled people identify first and foremost via their particular physical impairment, it is an obstacle to their development if this is ignored by the theoreticians of the struggle. Recent work has begun to rectify this gap (Morris, 1991; Crow, 1992; French, 1993). In order to reach out and foster collective identity, the disabled people’s movement will have to work out new ways of dealing with the issue of impairment, and of developing conscienticization among the wide majority of disabled people. Central to this will be cultural and artistic representations by disabled people themselves, because only through challenging images, and depicting the contradictions, will progressive conceptions emerge.

New social movements Alan Scott’s study of this phenomenon, most recent fixation of sociologists, defines the term as follows: A social movement is a collective actor constituted by individuals who understand themselves to have common interests and, for at least some

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He goes on to discuss race, gender, sexuality, peace and environment groups, but not disability. In fact, none of the major theorists mention disability. However, Michael Oliver (1990) has argued that the disabled people’s movement is a new social movement in that it has the following features: marginalisation from traditional politics: the link of the personal with the political; a critical evaluation of society; and post-materialism. To a certain extent, the important qualifier in the equation is ‘new’: these movements are very much seen in distinction to previous political forces, chiefly the working-class and socialist movements. There is a tendency to downplay all elements of continuity, and to stress instead the rupture existing between these traditional forms of protest, and these ‘new’ developments. All these ‘new social movements’ do share some basic features (including the disability movement). They have arisen since the Second World War, mainly since the 1960s: however, this fact must not be allowed to obscure earlier forerunners such as the suffragists of the early twentieth century (or the National League of the Blind and Disabled). They are outside conventional party politics or trade union/corporate activity. Partly as a result of this second factor, they have recourse to ‘unconventional’ tactics and forms of political mobilisation: popular protest taking new forms such as the march, demonstration, blockade, boycott, sit-in etc. But these techniques are perhaps not so very new: mass action has been a feature of popular uprising for centuries. Moreover, in the absence of strike action as a potential weapon, these are the obvious alternatives. Perhaps an important aspect is the self-consciousness and preparation involved in mounting such activities: rarely spontaneous, often carefully planned to influence opinion-formers, the media etc. However, while all these groups look superficially similar in terms of tactics—many of which are adopted from each other to suit the particular instance (in this context, note the Scottish nationalist movement’s borrowing of tactics pioneered by the ‘Outrage’ gay and lesbian campaign in the 1990s), beyond this there are significant reasons to question the catch-all description of ‘new social movement’. It is my contention that this term obscures important differences between two types of contemporary popular struggle: the ‘post-materialist’ tendency, on the one hand, and the ‘liberation’ movements on the other. While they may share tactics and overlapping constituencies of support, there are fundamental distinctions between the two approaches.

Disabled people’s self-organisation 63 Take the idea, reiterated by Oliver, that new social movements, including the disabled people’s movement, are characterised by a shift in values to postmaterialism. This originates with authors such as Inglehart, who have contrasted the historical trend of social movements, for example the workers’ movement, with new developments. A simple opposition is drawn between the traditional claim for more resources, the materialist position, and the modern post-materialist value consensus: The presence of materialist or post-materialist values proves to be the most important single influence on whether a given individual will support new social movements. (Inglehart, 1990, p. 64) The survey evidence for this ‘value switch’ is simplistically designed, the results weak, and the case is certainly overstated. Most of the struggles mentioned above are about resource allocation: women, black people and disabled people are crucially concerned with their economic exploitation and poverty. Within feminism there is a central concern with equal pay, with gender inequality in the market-place, with discriminatory benefit systems etc. The whole thrust of the British disability movement is for more resources to be channelled towards disabled people, and challenges the distributive logic of capitalism. It would be more accurate to suggest that new social movements are often concerned with the interrelations of the market and the welfare state: perhaps there is relevance in Offe’s (1987) stress on those groups which occupy a marginal labour market role, such as women domestic workers, older people, migrant workers, disabled people, the ‘decommodified or peripheral groups’. A second criticism of new social movement theory is the tendency, for example in the work of Melucci (1989), to suggest that these struggles are not concerned with politics or the political process, are centred on civil society, and the control of information, not production. The latter point was refuted above. The former suggestion neglects the struggle to establish citizenship rights: political rights to vote, legal rights (for example, the age of consent, custody of children), and above all, social rights. The most relevant of these is the growing campaign in Britain for anti-discrimination legislation. Claus Offe seems to highlight the crucial issue: The opposition is primarily not between old and new values but between conflicting views of the extent to which different elements of modern values are satisfied. (Offe, 1987, p. 88) The movements of women, black people and disabled people have shown that these constituencies have not benefited from the post-war developments in both living standards and social rights, and demonstrated the continuing

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inequalities in access to both political and economic power. So Brand, quoting Klandermans, is fundamentally incorrect to argue that: . . . new social movements are not concerned with questions of distribution, economic power, or political power. (Brand, 1990, p. 25) Part of the important challenge of the liberation movements has been to widen the concept of the political: to suggest that personal, domestic and social relations are as political as voting and democratic representation. This is clearly not the same as a lack of concern with politics. Moreover, as such constituencies are marginalised from the political process, unrepresented either by political parties or corporate interests, there is often little choice but to operate in this way. Another supposed difference between the old and the new social movements relates to the question of interests. Connected with the lack of concern for resource allocation has been the argument that new movements are not protesting at their own economic situation out of personal grievances, but as a result of their value orientation. Dalton et al. (1990) have argued: Activists in new social movements often hold intense feelings about their cause, but these sentiments fall short of the primordial frustrationaggression emotions that spawned food riots and tax revolts in the eighteenth century and the revolutionary movements of the nineteenth. Moreover, student protestors and environmental activists are not primarily drawn from the ranks of the socially deprived. (Dalton et al., 1990, p. 7) Now this may or may not be accurate in terms of the ‘post-materialist’ wing of the new social movements: the anti-nuclear, green and peace campaigns. But it seems less relevant with regard to liberation struggles. Women, black people, gays and disabled people are very clearly mobilising in defence of their objective interests: social being and social consciousness have the potential to come together in a manner directly paralleling the marxist conception of the proletariat. Dalton et al. are wrong to suggest that the distinguishing feature of new social movements is that. . . . they lack the narrow special interest appeal to any one social grouping. New social movements are not drawn from the socio-economically disadvantaged or from repressed minorities. (Dalton et al., 1990, p. 12) The term ‘interest group’ has an ambiguity which might usefully focus the distinction here—on the one hand, those who are ‘interested in’ a cause— who have a value commitment, and on the other, those who ‘have interests’

Disabled people’s self-organisation 65 in the sense of a real stake in the outcome. Everyone has interests in world peace, global environmental survival and so forth. However, there is a significant difference between these comprehensive benefits and the more localised and personally specific benefits arising from progressive social relations in terms of gender, race, etc. Thus there is a real distinction to be drawn between interests as subjective preference, and interests as an objective social category. Alan Cawson distinguishes welfare pressure groups with traditional interest groups such as trade unions and employers’ organisations. The latter owe their existence to their common position in relation to capital, their role in the division of labour. As a result of this they have economic power and influence. As well as a dual economy, between competitive and monopoly capital, there is a dual politics, between such corporate interests and the pluralistic world of competing interest groups: The competitive group is formed by voluntary interaction: the corporate group consists of individuals having a common location in the socioeconomic structure of society. (Cawson, 1982, p. 38) Thus, social pressure groups (such as Shelter, Child Poverty Action Group (CPAG)), representing the interests of welfare state clients, do not have the power of corporate interests: They do not possess socio-economic leverage—they have no clout— because the clients they represent are not among the economically productive whose co-operation is a pre-requisite of successful policy. (Cawson, 1982, p. 43) My suggestion is that this dichotomy needs to be enlarged to include the distinction I have made above between the two forms of competitive interest groups: within the field of disability, Disablement Income Group (DIG) or Disability Alliance (DA) would be distinguished from BCODP. Both are competitive interest groups, but the former are not indigenous or representative. However they do gain considerable funding and have a measure of consultative input into government policy: . . . many of these organisations, which for many years have acted as both charities and disability pressure-groups, have built up close working relationships with official policy-makers, which gives them a degree of credibility but relatively little power. (Barnes, 1991, p. 218) In contrast to this role, the excluded, but representative, pressure groups who are interest groups in the true sense, straddle the corporate and competitive

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sectors and have resorted to new social movement tactics in order to achieve political and social change. Frank Wilson distinguishes corporatist and pluralist forms of politics, in a distinction similar to that between DIG/DA/RADAR and BCODP above: The established groups seek to perpetuate their monopolies by coopting or vigorously opposing new groups claiming to represent the same interests . . . The government often subsidizes the privileged groups and denies such funding to unofficial bodies. (Wilson, 1990, p. 69) Oliver has pointed out that organisations for disabled people outnumber organisations of disabled people by about 100 to one, and receive far higher levels of funding. Moreover, Wilson goes on to discuss the role that ‘official’ groups have in formulating and administering government policy, which echoes the role of DIG in administering the independent living fund. By contrast, those groups outside the process are left in a situation of ‘residual pluralism’: Frustrated by their inability to gain a hearing for their concerns by the policy-makers, outside groups resort to unconventional methods such as demonstrations, boycotts, political strikes, sit-ins and even violence to draw the attentions of the public or the policy-makers to their concerns. (Wilson, 1990, p. 71) Now I wish to move from criticising new social movement theory to discussing those elements that have clear relevance to the disabled people’s movement. Alan Scott has suggested that a key feature of new social movements is the stress on autonomy, at the level of the personal (the focus on consciousness, personal power etc); in the challenge of restrictions on freedom, and in what he calls the “autonomy of struggle”: . . . the insistence that the movement and those it represents be allowed to fight their own corner without interference from other movements, and without subordinating their demands to other external priorities. (Scott, 1990, p. 20) In focusing on autonomy, there is a parallel with the recent work of David Held (1987), who suggests that this concept has the potential to bring together new left and new right positions in a new, radical democracy. Carl Boggs makes similar claims: What emerges from the experience of local movements are the broad outlines of a radical democracy that rests upon a deeper conception of political involvement. (Boggs, 1986, p. 49)

Disabled people’s self-organisation 67 Certainly the disabled people’s movement exemplifies the notion of autonomy that Scott has described. Colin Barnes echoes both Scott and perhaps Held: . . . throughout the 1980s BCODP and its member organisations produced a wealth of policy initiatives which, when implemented, will benefit not only them but the disabled population generally. Furthermore, these strategies owe as much to the political ideologies of the right as they do to those of the left. These include enabling disabled people to free themselves from unnecessary and costly bureaucratic regulation; to earn a living rather than live off the state; to achieve a degree of personal autonomy comparable to that of their non-disabled peers; and to expand their role as consumers. (Barnes, 1991, p. 224) The central values of the disabled people’s movement are autonomy, integration, and independence. Features such as the US consumer perspective, the independent living movement, and the indigenous disability culture have a libertarian and grass roots emphasis that reflects, to an extent, this comment by the new social movement theorist, Brand: New social movements insist not only on the expansion of direct democratic forms of political participation but also on the widening of opportunities for social self-organisation. The cultural pluralism of the movements and their emphasis on autonomy also suggest a more reflexive way of political integration which is more responsive to different cultural norms and varying lifestyles. (Brand, 1990, p. 27) In this struggle, the forms of the organisation and the campaign have significance: The organizational forms of movement are not just ‘instrumental’ for their goals, they are a goal in themselves. Since collective action is focussed on cultural codes, the form of the movement is itself a message, a symbolic challenge to the dominant codes. (Melucci, 1989, p. 60) While not overstressing the semiotic component, it is clear that disabled people’s self-organisation challenges the myth of passivity and the objectification of disabled people. Disabled people, like children, are meant to be seen and not heard: they are meant to be grateful, not angry, they are meant to be humble, not proud. In challenging all these preconceptions and discriminatory ideologies, the movement is making progress every day, even before attaining the central political objectives. To quote Melucci:

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Tom Shakespeare The actors mobilize to regain control of their own action. They try to reclaim the right to define themselves against the criteria of identification determined by an anonymous power and systems of regulation that penetrate the area of ‘internal nature’. (Melucci, 1989, p. 61)

The British focus on terminology and the social model parallels this claim by Melucci: the rejection of medical identifications of disability in favour of the new structural analysis. A third feature of the disability movement which echoes Melucci’s analysis is the exposure of underlying oppressive ideologies and social relations: what had seemed to be altruistic benevolence is shown to be paternalistic domination. Charities are identified as being promoters of oppressive ideologies, health and welfare professionals are exposed as being insensitive, overbearing, patronising. Penetrating the mask of concern and care, the real power struggles have been revealed: The function of contemporary conflicts is to render visible the power that hides behind the rationality of administrative or organizational procedures or the ‘show business’ aspects of politics. (Melucci, 1989, p. 76) In this way, it is both the central structures and institutions that are being challenged, but also the ‘molecular’ level of daily life and relationships. Returning to the prefigurative nature of much new social movement politics—Melucci quotes McLuhan, ‘the medium is the message’—a parallel might be drawn with Lenin’s concept of consciousness. People’s understanding of their social being increased and developed as they participated in mass action and mobilisation. As in Maoism, the revolution is an educative process.

Conclusion The mobilisation around disability as a social movement is important for disabled people themselves, but also for the conceptualisation of disability. Selforganisation and direct action challenge prevailing stereotypes of powerlessness and objectification. This is important in the formation of disabled people’s own identity, just as it is in breaking down patterns of prejudice and discrimination. In making ‘personal troubles’ into ‘public issues’, disabled people are affirming the validity and importance of their own identity, rejecting both the victimising tendencies of society at large, and their own socialisation. In short, the issue is the development of individualisation, through the solidarity that the mass movement brings. New social movement theory, in combining divergent political phenomena, and overstressing the novelty of these developments, fails usefully to theorise this process.

Disabled people’s self-organisation 69

References Banks, O. (1986) Becoming a Feminist (Brighton, Wheatsheaf). Barnes, C. (1991) Disabled People in Britain and Discrimination (London, Hurst & Co.). Boggs, C. (1986) Social Movements and Political Power (Philadelphia, PA, Temple University Press). Brand, K.W. (1990) Cyclical aspects of new social movements, in: R. J. Dalton & M. Kuechler Challenging the Political Order (Cambridge, Polity Press). Bynoe, I., Oliver, M. & Barnes, C. (1991) Equal Rights for Disabled People (London, IPPR). Cawson, A. (1982) Corporatism and Welfare (London, Heinemann). Crewe, N.M., Zola, I.K. et al. (1983) Independent Living for Physically Disabled People (San Francisco, CA, Jossey-Bass). Crow, Liz (1992) Renewing the social model of disability, Coalition, pp. 5–9. Dalton, R.J., Kuechler, M. & Burklin, W. (1990) The challenge of new movements, in: R. J. Dalton & M. Kuechler Challenging the Political Order (Cambridge, Polity Press). DeJong, G. (1983) Defining and implementing the independent living concept, in: N. M. Crewe, I. K. Zola et al. Independent Living for Physically Disabled People (San Francisco, CA, Jossey-Bass). Driedger, D. (1989) The Last Civil Rights Movement; disabled peoples’ international (London, Hurst & Co.). French, Sally (1993) Disability, impairment or something in between? in: J. Barton et al. (Eds) Disabling Barriers: enabling environments (London, Sage). Held, D. (1987) Models of Democracy (Cambridge, Polity Press). Inglehart, R. (1990) Values, ideology and cognitive mobilisations in new social movements, in: R. J. Dalton & M. Kuechler Challenging the Political Order (Cambridge, Polity Press). Klein, E. (1984) Gender Politics (Cambridge, MA, Harvard University Press). Melucci, A. (1989) Nomads of the Present, edited by J. Keane & P. Mier (London, Radius). Morris, A.D. (1984) The Origins of the Civil Rights Movement (New York, Free Press). Morris, J. (1991) Pride Against Prejudice (London, Women’s Press). Offe, C. (1987) Challenging the boundaries of institutional politics, in: C. S. Maier Changing Boundaries of the Political (Cambridge, Cambridge University Press). Oliver, M. (1990) The Politics of Disablement (London, Macmillan). Pagel, M. (1988) On Our Own Behalf: an introduction to the self-organisation of disabled people (Manchester, GMCDP Publications). Safilios-Rothschild, C. (1976) Disabled persons’ self-definitions and their implications for rehabilitation, in: G. L. Albrecht The Sociology of Physical Disability and Rehabilitation (Pittsburgh, PA, University of Pittsburgh Press). Scott, A. (1990) Ideology and New Social Movements (London, Unwin Hyman). Wilson, F. L. (1990) Neo-corporatism and the rise of new social movements, in: R. J. Dalton & M. Kuechler Challenging the Political Order (Cambridge, Polity Press). Zola, I.K. (1983) Developing new self-images and interdependence, in: N. M. Crewe & I. K. Zola et al. Independent Living for Physically Disabled People (San Francisco, CA, Jossey-Bass).

5

Eugenics and disability discrimination David Pfeiffer Department of Public Management, School of Management, Suffolk University, Boston

Abstract Testimony presented during the passage of the Americans with Disabilities Act (P.L. 101–336) indicated the continued existence of discrimination based upon a disability. Many persons, including academics, do not believe that such discrimination exists nor do they believe that some of the most threatening discrimination in the US is based in state law. This paper details these state laws (past and present) in the area of domestic relations and presents the historical cause for the enactment of the discriminatory laws. The Eugenics Movement using (somewhat wrongly) Darwin’s evolutionary theory was and continues to be the force behind them. Policy implications are presented in the conclusion.

Introduction At the weekly luncheon of a service club in Massachusetts two men—one a local federal official who is well known for his civil rights work and who is black, the other an advocate for disabled people and who is disabled and the author of this piece—were invited to give short presentations about civil rights. The federal official made the comment that blacks were the only group whose civil rights had been limited by statute. When the disability advocate demurred, the federal official became very incensed. Like many persons the official was unaware of the many statutory ways in which the civil rights of disabled people were and still are violated through state and local government laws in the US. This same misconception is wide spread in the academic community. Recently an anonymous reviewer wrote, as a reason for rejecting an article similar to the present piece, that “developmentally disabled persons were always treated differently”. It is not known what definition of developmental disabilities the reviewer held, but the point of the article was that all people with disabilities were either treated as developmentally disabled persons who were not legally competent or else lived with the real possibility that they would be treated in such a way. That is, there was a real possibility that a person with a disability would be institutionalized, sterilized, and be denied all parental rights. Seemingly, for the anonymous reviewer, it was all right to treat

Eugenics and disability discrimination 71 developmentally disabled persons that way, but other persons with a disability would never be so treated. The purpose of this piece is to present evidence that both the federal official and the reviewer were wrong. People with disabilities, any disability, had their rights limited in the immediate past in the US and still do so today by existing state statutes and the courts’ incorrect interpretation of other statutes. They are constantly faced with the possibility of being deprived of fundamental rights that non-disabled persons enjoy. The great interest today in discovering which genes cause inherited impairments only accentuates the problem. As Rothstein (1992) points out, the Americans with Disabilities Act is only a first step toward fundamental changes necessary to avoid widespread discrimination based upon genetic testing. The view of many scholars is represented in a law review article by Robert and Marcia Burgdorf entitled “The wicked witch is almost dead” (Burgdorf & Burgdorf, 1977). It discussed the problems of US Supreme Court Justice Oliver Wendell Holmes’ opinion in Buck v. Bell, 274 US 200 (1927), in which a woman labelled feebleminded was sterilized against her will. Calling Holmes’ opinion embarrassing, the authors (p. 1033) concluded: . . . the decision was incorrect on its facts, was based on now discredited scientific theories, relied upon inaccurate analogies, applied inappropriate constitutional standards, and was in conflict with many philosophical principles of the American governmental system. The Burgdorfs called for an end to compulsory sterilization laws in this country and concluded their article with the sentence: “Fifty years of Buck v. Bell is enough.” This ending was a reference to Holmes’ infamous phrase in the end of his opinion: “Three generations of imbeciles are enough.” Nevertheless, contrary to what many persons believe, it was never overruled and is still the law of the land in the US.

Domestic relations The right to have children, to marry, and to raise one’s children are taken for granted by most US citizens. These rights are not automatic for disabled persons. As will be recounted below, the Eugenics Movement greatly influenced public laws regarding domestic relations in this country over the last century. Sterilization During the nineteenth century and into the twentieth century sterilization was a common remedy for ‘feeblemindedness’, as most disabilities were called. Before 1900 castration by removal of ovaries or testicles was the only method available for sterilization. During the third quarter of the nineteenth century the superintendent of the Winfield Kansas State Home for the Feebleminded

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castrated 44 boys and 14 girls before being forced to stop for medical (not legal) reasons. However, around 1900 Dr Harry Sharpe of the Indiana State Reformatory developed the procedure of vasectomy which is simple and cheap. About the same time in Europe the procedure of salpingectomy for women was developed. Sterilization on a large scale was then begun even though there was no legal basis for it. Dr Sharpe alone sterilized 600–700 hundred boys in the Indiana State Reformatory (Burgdorf, 1980, p. 860). In Indiana in 1907 the first involuntary sterilization law in the country was enacted. By 1911 Washington, California, Connecticut, and New Jersey enacted involuntary sterilization laws. By 1930 a total of 33 states had enacted such laws although in three states—New Jersey in 1913, New York in 1918, and Indiana in 1921—the laws were struck down as unconstitutional. In Michigan a law was enacted, but struck down in 1918. Seven years later a version of the Michigan statute was accepted by the courts as constitutionally valid. The US Supreme Court then upheld involuntary sterilization laws in 1927 in Buck v. Bell, 274 US 200. Even though Buck v. Bell has never been overruled by the US Supreme Court, some scholars (Burgdorf, 1980, p. 857) say that the reasoning used by Holmes was rejected in Skinner v. Oklahoma, 316 US 535 (1942), and is therefore no longer governing. In the case of Skinner v. Oklahoma a person who was convicted of larceny, stealing a chicken, was sentenced, as the law provided, to be sterilized because of prior convictions. The involuntary sterilization law would not have been applied if the crime had been another crime such as embezzlement. The Supreme Court struck down the Oklahoma law on the basis of equal protection. The Court said that the difference between the two crimes of theft and embezzlement could not be supported. As the Court wrote (Skinner v. Oklahoma, 316 US 535 at 542): Oklahoma makes no attempt to say that he who commits larceny by trespass [the chicken thief] or trick or fraud has biologically inheritable traits which he who commits embezzlement lacks. . . . We have not the slightest basis for inferring . . . that the inheritability of criminal traits follows the neat legal distinctions which the law has marked between those two offenses. The US Supreme Court in the Skinner Case found that the contention of inheritable criminal traits was sound. The law was struck down because it violated the principle of equal protection. This principle guaranteed to the chicken thief equal treatment which other criminals committing similar crimes would receive. Since an embezzler would not face the same punishment of forced sterilization, the Supreme Court struck down the law. Buck v. Bell remained the law of the land. It is also widely argued that in Roe v. Wade, 410 US 113 (1973), the US Supreme Court established a fundamental right of privacy which would prevent compulsory sterilization. The Roe Case, however, was decided by a 5–4 vote.

Eugenics and disability discrimination 73 There is considerable sentiment in the Courts, in the legal profession, and in public opinion that Roe should be overturned. If it were to be overturned, this protection against compulsory sterilization would vanish. Even if it is not overturned, the right of privacy is limited in the US Supreme Court’s June 1986 decision in Bowers v. Hardwick. In the Bowers Case the Supreme Court upheld the right of a state, in this case Georgia, to invade the privacy of the bedroom to observe if sodomy was being performed. The right of privacy is not a sufficient shield. Another argument that Buck v. Bell is no longer the law of the land is the fact that in it the Court relied upon the police power of the state to uphold Virginia’s compulsory sterilization law. The police power gives the state the right to act to protect the public health, safety, and welfare. While it is probably true that an argument based solely upon the police power would not be accepted by the Court, it is by no means certain. And in many cases the Supreme Court has agreed that the police power along with other powers of the state can be used to uphold a law or an action. Nevertheless, there are more persuasive arguments today for the legality of involuntary sterilization than the ones used by Holmes. In upholding the Virginia statute Holmes used the ‘rational basis’ test. This test provides that if a rational basis for a statute can be established and that there are no other problems, the courts should not invalidate the act. The Court found a rational basis and therefore did not strike down the law. Scholars today (Murdock, 1974) contend that more than a rational basis would be needed to uphold a compulsory sterilization law for disabled people. While their argument may be correct, it is not relevant. The defense of involuntary sterilizations today is based upon the doctrine of parens patriae which means, in a loose way, ‘father power’. That is, fathers—both biological and legal—know what is in the best interest of the ‘child’ and can force the ‘child’ to comply even if the ‘child’ is an adult who happens to have a disability. A 1975 North Carolina statute (General Statutes 35–50) which provided for the sterilization of mentally defective persons was successfully defended under the doctrine of parens patriae. The statute gives the following definition of a mentally defective person (General Statutes 35–1.1): A ‘mental defective’ shall mean a person who is not mentally ill, but whose mental development is so retarded that he has not acquired enough selfcontrol, judgment, and discretion to manage himself and his affairs, and for whose own welfare or that of others, supervision, guidance, care, or control is necessary or advisable. The term shall be construed to include ‘feebleminded’, ‘idiot’, and ‘imbecile’. All that is necessary for sterilization of such a person is for the superintendent of an institution or a county director of social services to obtain a court order for it. In fact, it is the duty of the superintendent or county director to initiate such proceedings whenever the official feels it is in the person’s best interest or the

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public’s interest. If a superintendent or county director can convince a judge that a person with a disability can not manage day-to-day affairs, needs guidance, and would ‘benefit’ from the sterilization, then the judge can order that it be done. With some procedural modifications, the statute was upheld in NCARC v. North Carolina, 420 F.Supp. 451 (1976). In 22 states a similar law exists including Arizona (Revised Statutes 36–532 ff.), California (Penal Code 2670), Connecticut (General Laws 17–19), Delaware (16 Code 5701 ff.), Indiana (Statutes 1973, 16–13–13–1 ff.), Maine (Revised Statutes 34–2461 ff.), Michigan (Statutes 14.381 ff.), Minnesota (Statutes 252A.13), New Hampshire (Revised Statutes 174:1 ff.), South Carolina (Code 44–47–10 ff.), and Virginia (Code 37.1–156–71). Involuntary sterilization is specifically authorized in 15 states: Arkansas, Colorado, Connecticut, Delaware, Maine, Minnesota, Mississippi, North Carolina, New Jersey, Oklahoma, Oregon, South Carolina, Utah, Virginia, and West Virginia. (Brakel et al., 1985, pp. 523–524) Epilepsy is still included as a permissible reason for compulsory sterilization in Delaware, Mississippi, and South Carolina. Most states base the action on the person’s or society’s ‘best’ interest, but nine states still base it on an eugenic argument. Even in the absence of a law authorizing sterilization, courts can and do compel persons with disabilities to undergo compulsory sterilization with no regard of the disabled person’s view of his or her ‘best’ interest. It is a threat to all disabled persons in the US (Macklin & Gaylin, 1981; Brantlinger, 1992; Elkins & Anderson, 1992; Ferguson & Ferguson, 1992; Fredericks, 1992; Kaeser, 1992). Marriage The right to marry is an important one which most people take for granted. This right is subject to regulation by the states because, in part, it establishes a contract and governs inheritance and ownership of real property. State legislation which appears to limit this right receives close examination by the US Supreme Court in the context of the Fourteenth Amendment as a result of Meyer v. Nebraska, 262 US 390 (1923). In the Meyer case the Court declared the right to marry to be a fundamental right under the US Constitution. Any limitation of this right must respect the principles of equal protection and due process. The Court struck down a state statute which prohibited interracial marriage as a violation of these principles in Loving v. Virginia, 388 US 1 (1967). However, the Court never struck down a state statute which limited marriage by or to a disabled person even when equal protection was clearly violated. For example, Connecticut had a statute which prohibited any man who was “. . . epileptic, imbecile, or feeble-minded” from marrying a woman under 45 years of age, the presumed limit of child-bearing. A woman under 45 years of age who was “. . . epileptic, imbecile, or feeble-minded” could not marry regardless of the man’s age. In Gould v. Gould, 61 A. 604 (1905), this statute was upheld by the Connecticut courts. While acknowledging that under the

Eugenics and disability discrimination 75 Connecticut constitution marriage is a fundamental right, the court refused to strike down the statute. It said that the legislature also had constitutionally set a minimum age to marry and had prohibited persons related by blood from marrying. One of the persons in this case had epilepsy and the court wrote: That epilepsy is a disease of a peculiarly serious and revolting character, tending to weaken mental force, and often descending from parent to child, or entailing upon the offspring of the sufferer some other grave form of nervous malady, is a matter of common knowledge, of which courts will take judicial notice. . . . One mode of guarding against the perpetuation of epilepsy obviously is to forbid sexual intercourse with those afflicted by it, and to preclude such opportunities for sexual intercourse as marriage furnishes. To impose such a restriction . . . is no invasion of the equality of all men before the law, if it applies equally to all . . . who belong to a certain class of persons. . . The class of persons included all those with epilepsy so, the Connecticut court reasoned, there was no denial of equal protection or any other right. Members of the class of people with epilepsy, by implication, do not share the equal rights of the class of US citizens. Similar laws also existed, at that time, in Michigan, Minnesota, Kansas, and Ohio. The Connecticut act was not repealed until 1969. A 1953 statute in Pennsylvania (48 Statutes 1–1 ff.) prohibits a marriage certificate from being issued to a person who has epilepsy, is “weakminded, insane, or . . . of unsound mind” except under a court order. In Washington (26 Revised Code 26.04.030) marriage is prohibited if either party: . . . is a common drunkard, habitual criminal, imbecile, feeble-minded person, idiot or insane person, or person who has theretofore been afflicted with hereditary insanity, . . . unless it is established that procreation is not possible by the couple intending to marry. The Massachusetts prohibition (General Laws 207, section 5) reads: An insane person, an idiot, or a feeble-minded person under commitment to an institution for the feeble-minded, to the custody or supervision of the department of mental health, or to an institution for medical defectives, shall be incapable of contracting marriage. Thirty eight states and the District of Columbia either ban or closely restrict the right of a mentally retarded person to marry. (Wells, 1983) This basic right is not guaranteed to disabled people.

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Parenting The right to parent, to raise your biological children, is also recognized as a fundamental right by the US Supreme Court. However, it can be overridden on the grounds of the health or safety of the child (Bernstein, 1991; Sackett, 1991). Even though it has little relationship to these grounds, the common basis for removing children from disabled parents is parental IQ. (State ex rel. Paul v. Department of Public Welfare, 170 So.2d 549 (1965), Louisiana Court of Appeals; In re McDonald, 201 N.W.2d 447 (1972), Iowa Supreme Court; Sexton v. J.E.H., 355 N.W.2d 828 (1984), North Dakota Supreme Court; and In re G.C.P., 680 S.W. 2d 429 (1984), Missouri Court of Appeals) Research shows that IQ tests are biased and limited (McCall, 1984; Sternberg & Gardner, 1984) a fact recognized by the courts in education cases (Larry P. v. Riles, 495 F.Supp. 926 (1979), N.D. California; PASE v. Hannon, 506 F.Supp. 831 (1980), N.D. Illinois). Nevertheless, disabled parents must prove their ability to parent to a degree beyond that of non-disabled parents. A couple in California who were hearing and speech impaired, but quite capable of parenting, were prevented from adopting a child in Adoption of Richardson, 59 Cal. Rptr. 323 (1967). Recent cases may indicate a new trend. A California trial court judge had removed two children from a father’s custody because he was a quadriplegic. The trial court judge had concluded that the father could never be a ‘good’ parent because he could not, for example, play catch with his son. The California Supreme Court, In re Marriage of Carney, 598 P.2d 36 (1979), sharply rebuked the trial judge and overturned his decision. A district court judge in Idaho had refused a mother custody of her two children because she had epilepsy. The Idaho Supreme Court reversed the decision in Moye v. Moye, 627 P.2d 799 (1981). In Michigan the Michigan Court of Appeals, in Department of Social Services v. McDuel, 369 N.W.2d 912 (1985), overturned a lower court decision because it had improperly interpreted ‘mental illness’ to be the same as ‘physical illness’. And in Johnson v. J.K.C., Sr., 841 S.W. 2d 198 (Mo. Ct. App. 1992), the Missouri Court of Appeals reinstated the parental rights of a ‘mildly mentally retarded’ couple in regard to their 9-year-old son because there was a bonding between son and father and because the child’s advanced age meant that the parents could provide for his care. However, it upheld the termination of parental rights in regard to a five-year-old daughter because of her age and the fact that she had never lived with her parents. From the viewpoint of the child, California (Civil Code 227b) is the only state in the union which allows a parent to petition to have an adoption decree annulled on the basis of a disability in the child. The statute provides that if within 5 years of the final decree the child gives evidence of a developmental disability which is so severe that the child would be considered not adoptable, that the disability was the result of pre-adoption conditions, and that the parents did not know of the condition, then the adoptive parents can ask the court to annul the adoption (The Legal Rights of Persons with Epilepsy, 1985,

Eugenics and disability discrimination 77 p. 107). That occurred in Christopher C. v. Kay C., 278 Cal. Rptr. 907, when the California Court of Appeals affirmed a lower court decision to grant a petition to set aside an adoption because the child had an undisclosed mental illness. Perhaps the courts are changing their view of persons with disabilities who are parents. At the same time they seem to be making it easier for involuntary sterilization to occur. Once sterilized a person with a disability no longer has the chance to have biological children and so the problem involving parenting will not arise since it is also all but impossible for them to adopt a child.

Stereotypes and disability These laws and court cases are based upon common stereotypes of disability and disabled persons. They are based upon several inaccurate assumptions about disabled people. (Bogdan & Biklen, 1977; Dearing, 1981; Longmore, 1985; Wright, 1985; Bogdan & Taylor, 1987, 1989). The first one is the assumption of general maladjustment of disabled persons. There are numerous studies which purport to show that disabled people are maladjusted, but the studies suffer from grave methodological problems involving the instruments used. Just as bias exists in IQ tests, there are biases in instruments used to gauge adjustment. In addition, if the researcher expects maladjustment in disabled persons, that is what will be found, a self-fulfilling prophecy. Furthermore, there is a strong tendency in these studies to attribute any deviation from the norm to the existence of a disability: if a person is disabled, then the person must be maladjusted. The truth is that the assumption of general maladjustment is a gross over simplification of the facts conditioned by prejudice as careful analysis of these studies show. The second assumption is that of tragedy. Non-disabled persons can not imagine how disabled persons can bear their lives. The existence of a disability appears to them to be an overwhelming tragedy, a life filled with suffering and frustration. It is true that disabled persons suffer and become frustrated, but so do non-disabled persons. There are many carefully done studies which show that things like divorce or death cause more pain, suffering, and tragedy in the lives of disabled persons than the existence of a disability. The next assumption is closely related to the first two and that is the assumption of excessive frustration. It is simply not correct that disabled people experience more frustration than other people. Perhaps disabled persons are more aware of frustrating, unnecessary barriers placed before them, but nondisabled persons also experience excessive frustration. If a researcher expects to find excessive frustration, it will be found just like general maladjustment will be found. But the way to overcome frustration for both disabled and nondisabled persons is to remove the frustrating barriers, not to counsel more adjustment. These assumptions are all based upon yet another incorrect assumption: the assumption of disability as a personal attribute. A disability is a central part of

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the life and identity of a disabled person, but it is not simply a personal attribute. It is rooted firmly in the environment. In certain environments particular disabilities are not noticed while in other environments they are very noticeable. A disability is often a limitation because of an environmental barrier which is unnecessary, unneeded, largely unwanted, but there because of someone’s unthinking. The final assumption is the myth of sin. That is, the cause of a disability must be someone’s sin or wrong doing: the disabled person, the parents, the physician, the drunk-driver, and so on. Perhaps the disability can be traced to a specific event, but the reason for that event is certainly not sin on the part of someone who ends up with a disability. Frequently, people in society attempt to locate the blame or reason for everything perceived as ‘bad’. When nothing else can be blamed, sin is the obvious alternative explanation. The stereotypes resulting from these false assumptions are influential and this influence is magnified by language. The power of language to shape policy and influence views of reality is great (Edelman, 1985). The terms ‘nigger’ and ‘chick’ are evocative as is the term ‘cripple’. While the first two terms are rarely used today in the media, the third term is commonly used as a verb (to cripple), as an adjective (crippled), and as an adverb (crippling) (Longmore, 1985; Zola, 1985). It is not surprising that the stereotypes are deeply influential upon public policy in this society (Higgins, 1980; Hahn, 1985a; Crispell & Gomez, 1988; Handberg, 1989). These stereotypes influence friendships (Kleck & DeJong, 1983), govern success (Bordieri et al., 1983; Beuf, 1990), and determine how disabled people are viewed by the professionals who seek to help them (Scott, 1981; Nixon, 1985; Owen, 1985; Westbrook & Nordholm, 1986; Barnett, 1986). They are widely found today and throughout history. In the US disabled persons were stereotyped from colonial times as defective and thus not being able to participate as citizens. Not until the nineteenth century did disabled people attempt in any numbers to participate in civic matters. When they tried to do so, they were usually barred. The 1872 civil procedure code of the County of Los Angeles prevented persons who were deaf, blind, and physically handicapped from serving on juries. The reason was that such persons were considered, according to the code, to be “decrepit and lacking in all their natural faculties”. When the Los Angeles County Supervisors were considering a measure to repeal this provision in 1976, it was opposed by two county judges because “. . . the blind would have difficulty in determining the credibility of witnesses since they could not observe witnesses’ demeanor” (Los Angeles to Decide . . ., 1976) Such stereotypes about blind persons are common (Chevigny, 1946; Criddle, 1953; Scott, 1981) as they are about disabled persons in general. The legal impact of these stereotypes upon the lives of people with disabilities did not happen by accident. It was the result of an identifiable social movement whose purpose was to make society better in all ways.

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The eugenics movement The reason for the impact of the stereotypes and the resulting discriminatory laws can be found in the values and prejudices of people in society (Weiss, 1987; Brown, 1988; Proctor, 1988; Caplan, 1989; Weindling, 1989). One of the primary sources of these prejudicial attitudes which led to the laws is the Eugenics Movement which has its roots in nineteenth century biology, especially the work of Charles Darwin (Mazumdar, 1992; Stepan, 1992). The evolutionary ideas of Darwin are not necessarily supportive of the goals of the Eugenics Movement, but they led to the work in genetics which gave rise to the movement. It is not accidental that a certain pessimism can be read into Darwin because he took his central idea from Thomas Malthus’ work Essay on Population, first published in 1798 (Dampier, 1952, chap. 7). Malthus wrote that the human race would always grow in numbers until it has insufficient means for survival. Then war, famine, or disease would trim back the number of people. Unnecessary individuals would die. This pessimistic view of history influenced Darwin. As he wrote (quoted in Dampier, 1952, p. 276): In October 1838 I happened to read for amusement Malthus on Population, and being well prepared to appreciate the struggle for existence which everywhere goes on from long continued observation of the habits of animals and plants, it at once struck me that under these circumstances favourable variations would tend to be preserved, and unfavourable ones to be destroyed. The result of this would be the formation of new species. Here then I had a theory by which to work. For the next 20 years Darwin collected data and conducted experiments. In November 1859 his Origin of Species was published. Ideas of evolution were not unknown during the nineteenth and previous centuries. Toward the end of his life Charles Darwin acknowledged the influence that his grandfather, Erasmus Darwin, had on his ideas. Erasmus Darwin was one of a number of writers who had advanced the idea of evolution, but in a different form (Colp, 1986). Unlike earlier works, Charles Darwin’s Origin of Species established evolution on a firm basis because it was accompanied by extensive facts based on his observations and experiments. Thomas Huxley, the chief expositor of Darwin’s theory, describes it as a flash of lightning in the dark (Dampier, 1952, pp. 279–280). It was not a flash appreciated by all persons because there was intense opposition to Darwin’s theory over the next twenty years. Only toward the end of his life did the opposition begin to subside. Out of the controversy generated by The Origin of Species came the field known today as genetics. Unlike most fields, genetics can be said to have a birth month, although not exactly a birth day. In April 1900 three different plant breeders rediscovered and/or republished what Gregory Mendel had published in 1866. Mendel’s ideas encompassed a statistical rule by which plant

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characteristics could be predicted from one generation to another (Waddington, 1972). Such a statistical approach was championed in Great Britain by W.F.R. Weldon, Karl Pearson, and Francis Galton. Pearson, the statistician who developed the product moment correlation coefficient as well as other statistical tools, founded the journal Biometrika with Weldon. Galton, who had turned his attention to the genetic improvement of people, coined the term eugenics for his work. Another contributor to this movement was the statistician G. Udny Yule who developed the definition of statistical independence used today with the Chi Square statistic. Finally, there was the statistician Ronald Fisher, known for his work with statistical tests of significance, who reconciled early objections raised by Weldon and Pearson to the Mendel approach. Fisher was very concerned that previous civilizations had collapsed because the ‘better’ classes had failed to reproduce a sufficient number of offspring. In 1912 he addressed the second annual meeting of the Cambridge University Eugenics Society and stressed the need for careful breeding among the ‘better’ classes. A year later in an address to the Eugenics Education Society he repeated his concern and said (as quoted in Box, 1978, p. 32): We do not dub ourselves knights of a new order. But necessarily, inevitably, it might be unconsciously, we are the agents of a new phase of evolution. Eugenists will on the whole marry better than other people, [they will have] higher ability, richer health, greater beauty. They will, on the whole, have more children than other people. Although Fisher might have repudiated much of what later happened in the name of eugenics, by 1929 he was actively engaged in a campaign to legalize sterilization (Box, 1978, pp. 196–203). His public position was always that the sterilization must be voluntary and must be viewed as a right. He firmly believed that if viewed in this way sterilization would become widespread and would reduce the number of ‘defectives’ being born. Fisher’s views were not shared by all members of the Eugenics Movement. During the nineteenth century and on into the twentieth century there was considerable sentiment that certain racial or ethnic groups were superior in terms of intelligence and moral character. Such reasoning is the foundation for the doctrine of Manifest Destiny in the United States which justified the genocide of Native Americans and the conquest of Puerto Rico and the Philippines. Within the American society, the argument went, the lower classes were intellectually and morally inferior. In order to preserve civilization and social order, the lower classes must be restrained. Unionization of American industry was opposed on the grounds that the common worker could not know what was best for him/herself much less for the entire nation. Like Fisher, many persons in the US were concerned that civilization was doomed unless ‘defective’ persons were kept from multiplying. Lothrop Stoddard wrote in 1922 (quoted in Smith, 1985, p. 3) that “the stern processes of natural selection” had kept down the number of “defective” people in the past,

Eugenics and disability discrimination 81 but now “modern society and philanthropy have protected them and thus favored their rapid multiplication”. Arguments in the abortion debates often contain premises of the Eugenics Movement (Heifetz, 1989; Hollander, 1989; Merrick, 1989; Wertz & Fletcher, 1989; Wolfensberger, 1989). Equating the availability of abortion with the encouragement of promiscuity, David Wilson (1986) states that mature, educated married couples who “conscientiously practice contraception” sometimes conceive children. The probability that unmarried teenage girls, he writes, will become pregnant is close to certainty if abortion continues to be available. The process is negatively self-selective. The most responsible, educated, economically self-sufficient, genetically and culturally endowed are the least likely in any age cohort actually to produce offspring. What abortion is producing instead . . . is male irresponsibility and a dysgenic reproductive pattern in which those less prepared to cope with the multitudinous challenges of advanced technocracies are outbreeding those whose capacities may be expected to be superior. The ‘better’ classes will obtain abortions while the ‘inferior’ classes will multiply. This concern is the same one voiced at the beginning of the century by Fisher, but not only will the ‘better’ classes produce fewer children, the ‘inferior’ classes will produce ‘defective’, i.e. disabled children. In the nineteenth century due (in part) to the Eugenics Movement, there was social policy implemented to deal with the ‘defective’ and disabled members of society. The earliest institution for ‘defectives’ and ‘feebleminded’ persons in the US was established in Boston by Samuel Howe in 1849. It was Howe’s intent to educate the ‘defectives’ so that they could return to society. However, he was so successful in removing unwanted persons from the streets and from public sight that families and communities refused to have them back. Although he warned against permanent segregation, no one listened. All that public leaders could see was that persons whom they associated with poverty, crime, insanity, prostitution, alcoholism, and general immorality were being removed from society. As Massachusetts Governor Benjamin Butler said in his 1883 address to the state legislature (Butler, 1883): When the state shall have sufficiently educated every bright child . . . it will be time enough to undertake the education of the idiotic and feebleminded. I submit that this attempt to reverse the irrevocable decree as to the survival of the fittest is not even kindness to the poor creatures who are at this school . . . none of the pupils have become self-supporting. . . . a well cared-for idiot is a happy creature. An idiot awakened to his condition is a miserable one. Howe had been too successful. A few years before Butler’s address, R.L. Dugdale published his famous study

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The Jukes in 1877. In his book Dugdale described what he called the degeneracy of the Jukes family. His work stimulated the publication of a large number of family histories (Rafter, 1988). Although Dugdale said it was caused by the social environment, an increasing number of these family histories, as a result of the influence of the Eugenics Movement, ascribed the degeneracy to hereditary factors. The most influential of all of these works appeared in 1912 and was authored by Henry Goddard (Goddard, 1912). It was entitled The Kallikak Family: a study in the heredity of feeble-mindedness. Like Darwin’s Origin of Species, Goddard’s work was immediately accepted as scientific proof of a theory. It was a theory which ascribed almost all social ills to a particular class, the feebleminded. Henry Goddard was, in all senses of the word, an academic. He was well educated with a bachelor’s and master’s degree from Haverford College. In between his two degrees from Haverford, he taught for a year at the University of Southern California in 1888. For 8 years he worked as a secondary school principal and then entered Clark University to study psychology. He received his PhD from Clark in 1899 and went to teach at the Pennsylvania State Normal School in West Chester (Smith, 1985, p. 39). In 1906 he went to the Training School for Feeble-Minded Boys and Girls in Vineland, New Jersey, as director of research. As an empirically minded scientist he wanted to do research into the causes and hopefully the cure of one of society’s major problems, as he saw it. While traveling in Europe he met Alfred Binet and returned with his intelligence test which was to become the cornerstone of Goddard’s research. The Binet test was to be used by Goddard and future generations to detect mental defectives. As late as 1981, 92% of the state vocational rehabilitation agencies in the United States were using some form of an IQ test to diagnose mental retardation and in 80% of the states no formal adaptive behavior assessment was used to validate the conclusions based on the test results (Sheldon, 1982). For example, Rhode Island (General Laws, 40.1–22–3 (5)) defines a mentally retarded person as one “with significant subaverage general intellectual functioning two (2) standard deviations below the normal . . .”. Even though IQ tests give questionable results, ‘experts’ place great reliance upon them even today (Snyderman & Rothman, 1989). After establishing (to his satisfaction) that feeblemindedness was inherited, Goddard turned to the policy question of how to combat the many social ills which the feebleminded brought to society. He focused on the slums where, he said, most of the crime, poverty, and immorality existed. As he wrote (quoted by Smith, 1985, p. 18): If all of the slum districts of our cities were removed tomorrow and model tenements built in their places, we would still have slums in a week’s time because we have these mentally defective people who can never be taught to live otherwise than as they have been living. Not until we take care of this class and see to it that their lives are guided by intelligent people, shall we remove these sores from our social life.

Eugenics and disability discrimination 83 Of course, Goddard and others would be the ‘intelligent people’ who guided the ‘mentally defective people’. How would he undertake to remove the ‘sores’? Sterilization was advanced as a temporary measure, but segregation into institutions was the final solution. Again, as Goddard wrote (quoted by Smith, 1985, p. 19): Such colonies [institutions] would save an annual loss in property and life, due to the action of these irresponsible people, sufficient to nearly, or quite, offset the expense of the new plant . . . Segregation through colonization seems in the present state of our knowledge to be the ideal and perfectly satisfactory method. People with disabilities were to be segregated and sterilized for the betterment of society. Although Goddard’s work was soundly criticized by some for its abysmal methodology and its faulty genetics, it was widely praised by others. Each criticism received a reply from either Goddard or from a defender of Eugenics (Meile et al. 1989). Persons made their academic career by writing about this country’s moral degradation and proposals for ridding the country of this scourge of feeble mindedness. But Goddard was not the only person who advocated sterilization and segregation and who was heard. Havelock Ellis, a leader in the struggle for human rights and especially women’s rights, begins his work The Task of Social Hygiene with attention to the problem of feeblemindedness (to use his words). Citing the work of Goddard and others, Ellis (1927, p. 35) writes: The feeble-minded have no forethought and no self-restraint. They are not adequately capable of resisting their own impulses or the solicitations of others, and they are unable to understand adequately the motives which guide the conduct of ordinary people. Not only are they presently a menace, wrote Ellis, but they are “. . . the reservoir from which the predatory classes are recruited” (Ellis, 1927, p. 38). They are “an evil that is unmitigated”, a “poison to the race”, and their “very existence is itself an impediment” to civilization (Ellis, 1927, p. 43). But Ellis stopped short of Goddard’s methods of sterilization and segregation. Instead, Ellis wanted the ideals of Eugenics to become part of the civic religion so that civilization would work to rid itself of the “defectives” using various public policies including statutory law. Other persons in the Eugenics Movement were not as reticent as Ellis to recommend Goddard’s methods. Walter Fernald, a successor to Howe, was quite blunt (Fernald, 1912, p. 92): The feebleminded are a parasitic, predatory class, never capable of selfsupport or of managing their own affairs. The great majority ultimately

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The only question remaining was how to implement this policy. Extermination was hinted, but not openly used (Lusthaus, 1985). Instead, segregation into institutions and sterilization was the answer. Goddard’s influence spread. He was invited to Ellis Island to help identify and thus exclude feebleminded immigrants. Using the Binet test, Goddard found that 79% of all Italian immigrants, 80% of all Hungarian immigrants, 83% of all Jewish immigrants (the only group not listed by nationality), and 87% of all Russian immigrants were feebleminded (Smith, 1985, pp. 119–120). Goddard concluded that if the American people wanted feebleminded immigrants barred, then they had better let Congress know. In 1924 Congress passed the Immigration Restriction Act limiting the number of immigrants from Southern and Eastern Europe. During World War I army recruits were given the Binet test. Goddard’s interpretation of the results were that half the country had the intelligence of a 13-year old or less. His conclusions (Smith, 1985, pp. 128–130) were that it argued against democracy. No society, he said, could exist with decisions being made by the average, much less the lowest, in intelligence. About half of the country should be disenfranchised so that the more intelligent citizens could guide public policy makers. Numerous other studies appeared after Goddard’s which found ‘defectives’ to be the source of most social evils (Smith, 1985, chap. 9). Similar policy recommendations were put forth by these writers. One of the more zealous followers of Eugenics was Harry Laughlin who drew up a model sterilization law in 1922. His model law would require the sterilization of the following ‘defective’ classes (Laughlin, 1922, pp. 446–447): . . . (1) feebleminded; (2) insane (including the psychopathic); (3) criminalistic (including the delinquent and wayward); (4) epileptic; (5) inebriate (including drug habitues); (6) diseased (including the tuberculous, the syphilitic, the leprous, and others with chronic, infectious, and legally segregable diseases); (7) blind (including those with seriously impaired vision); (8) deaf (including those with seriously impaired hearing); (9) deformed (including the crippled); and (10) dependent (including orphans, ne’er-dowells, the homeless, tramps, and paupers). It is interesting to note (Smith, 1985, p. 138) that Laughlin himself was a person with epilepsy. Although married, he had no children. By 1938 33 states had a sterilization law and nation wide over 27 000 compulsory operations were performed (Smith, 1985, p. 139). The California law

Eugenics and disability discrimination 85 required the sterilization not only of the “feebleminded” and anyone with “inherited mental diseases or diseases of a syphilitic nature”, but also anyone in a state hospital who showed evidence of “perversion or marked departures from normal mentality” (Berns, 1953, p. 770). By 1951 over 19 000 persons had been sterilized under the California law. In Virginia, in the institution where Carrie Buck had lived, over 4000 had been sterilized (Smith, 1985, p. 150). Even though the law under which she was sterilized was repealed in 1968 (Burgdorf & Burgdorf, 1977), the practice in Virginia was not stopped until 1972. According to Ferster (1966), over 63 000 persons were involuntarily sterilized in the US for genetically related reasons from 1921 to 1964.

Conclusion The laws discussed earlier were based on the hard science of the day as well as the attitudes of the public toward disabled persons. There was no small clique which secretly promulgated the sterilization and segregation laws which were applied to disabled persons and which still operate today (Berns, 1953; Bell, 1962; Haller, 1963; Wolfensberger, 1975, 1981; Forman & Hetznecker, 1982; Hahn, 1982, 1983; Pfeiffer, 1985, 1987). It was (and is) public opinion as articulated by public leaders and scientific opinion as articulated by professionals which gave these laws impetus for their passage and for their implementation. It is this public and scientific opinion which still supports them today (Gochros & Gochros, 1977; Starr, 1982; Bock, 1983; Melnick, 1985; Gould, 1985; Lusthaus, 1985; Barnett, 1986; Mehan, Hertweck, & Meihls, 1986; Bell, 1986; Holtzman, 1989; Sanderson, 1990; Miringoff, 1991; Bosk, 1992). Although in 1985 the Governor of Texas signed legislation which removed from Texas laws such terms as idiot, feeble-minded, crippled, and deformed, the terms remain in the statutes of most states. The prejudicial attitudes still exist in public law. Physicians and hospital administrators routinely allow newly born disabled infants to die. They disconnect the life sustaining apparatus of elderly persons because their quality of life is too meager. Parents who discover that the mother is carrying a ‘defective’ fetus are counselled to obtain an abortion (Miringoff, 1989, 1991). Wolfensberger (cited in Herr, 1984, p. 8) estimates that some 200 000 abortions a year are for this reason. Disabled children who are allowed to live receive second-rate or worse education in public schools. Some disabled children, especially if the child has AIDS, receive no education at all. Disabled people today are fired or not hired in the first place because of their disability. Health care is denied to persons with disabilities. Although many municipalities supply, at taxpayers’ expense, services such as parks and airports, personal assistants who would allow disabled persons to work and be taxpayers are curtailed for budget reasons. Many public transit systems, paid for and subsidized by the tax moneys of disabled persons, can not be used by persons with mobility and sensory disabilities. In a number of states former residents in state schools and hospitals are reinstitutionalized because there is not sufficient funds appropriated for community

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centers. Public housing is constructed to be not accessible and tenants who behave in a peculiar way are evicted. Citizens with hearing and vision impairments are denied access to public documents. Other disabled persons who are judged not able to manage daily tasks are sterilized for their own ‘benefit’. They are also prohibited from marrying or from parenting their own children. Disabled persons are also the outcasts of academia. It was public attitudes which allowed the oppressive laws to be promulgated and implemented, but it was academia which gave justification for those laws (Hahn, 1985b; Allen, 1986; Weiss, 1987; Gelb, 1989; Meile et al., 1989; Nelkin & Tancredi, 1989; Weingart, 1989; Mazumdar, 1992; Blackford, 1993). To counter this threat to the civil rights of people with disabilities, public and private agencies (including academia) must mount an effective drive to educate the public in regard to the facts about disabilities and the legal rights of disabled persons. The passage of the Americans with Disabilities Act (P.L. 101–336) is a step toward dealing with the discriminatory state laws and practices. It is time that even more be done. State laws which discriminate against a person with a disability must be struck down. Prior decisions which allow such discrimination must be overruled. State and federal regulations implementing laws must be revised. Persons with disabilities are capable of managing their affairs, of being responsible, tax paying citizens, and of being lovers and parents. If people with disabilities have the right to exist in this society, then they have the right to ways to make that existence meaningful and effective. Through education and political action this end can be achieved.

References Allen, G. (1986) The Eugenics Record Office at Cold Spring Harbor, 1910–1940, Osiris, 2d Series, 2, pp. 5–42. Barnett, W. (1986) The transition from public residential schools for retarded people to custodial facilities: an economic explanation, Disability, Handicap & Society, 1, pp. 53–71. Bell, A. (1962) Attitudes of selected rehabilitation workers and other hospital employees toward the physically disabled, Psychological Reports, 10, pp. 183–186. Bell, T. (1986) Education policy development in the Reagan administration, Phi Delta Kappan, 67, pp. 487–493. Berns, W. (1953) Buck v. Bell: Due process of law?, Western Political Quarterly, 6, pp. 762–775. Bernstein, P. (1991) Termination of parental rights on the basis of mental disability: a problem in policy and interpretation, Pacific Law Journal, 22, pp. 1155–1185. Beuf, A. (1990) Beauty is the Beast (Philadelphia, University of Pennsylvania Press). Blackford, K. (1993) Erasing mothers with disabilities through Canadian family-related policy, Disability, Handicap & Society, 8, pp. 281–294. Bock, G. (1983) Racism and sexism in Nazi Germany: motherhood, compulsory sterilization, and the state, Signs: Journal of Women in Culture and Society, 8, pp. 400–421. Bogdan, R. & Biklen, D. (1977) Handicapism, Social Policy, March/April, pp. 14–19.

Eugenics and disability discrimination 87 Bogdan, R. & Taylor, S. (1987) Toward a sociology of acceptance: the other side of the study of deviance, Social Policy, Fall, pp. 34–39. Bogdan, R. & Taylor, S. (1989) Relationships with severely disabled people: the social construction of humanness, Social Problems, 36, pp. 135–148. Bordieri, J., Sotolongo, M. & Wilson, M. (1983) Physical attractiveness and attributions for disability, Rehabilitation Psychology, 28, pp. 207–215. Bosk, C. (1992) All God’s Mistakes: genetic counseling in a pediatric hospital (Chicago, University of Chicago Press). Box, J. (1978) R.A. Fisher: the life of a scientist (New York, Wiley). Brakel, S., Parry, J. & Weiner, B. (1985) The Mentally Disabled and the Law, 3rd edn (Chicago, American Bar Foundation). Brantlinger, E. (1992) Professionals’ attitudes toward the sterilization of people with disabilities, The Journal of the Association for Persons with Severe Handicaps, 17, pp. 4–18. Brown, R. (Ed.) (1988) Quality of Life for Handicapped People (London, Croom Helm). Burgdorf, R. (Ed.) (1980) The Legal Rights of Handicapped Persons (Baltimore, Paul H. Brookes). Burgdorf, R. & Burgdorf, M. (1977) The wicked witch is almost dead: Buck v. Bell and the sterilization of handicapped persons, Temple Law Quarterly, 50, pp. 995–1034. Butler, B. (1883) Address to the Great and General Court of Massachusetts. Caplan, A. (1989) The meaning of the holocaust for bioethics, Hastings Center Report, July/August, 19(4), pp. 2–3. Chevigny, H. (1946) My Eyes Have a Cold Nose (New Haven, Yale University Press). Colp, R. (1986) The relationship of Charles Darwin to the ideas of his grandfather, Dr Erasmus Darwin, Biography, 9, pp. 1–24. Criddle, R. (1953) Love Is Not Blind (New York, W.W. Norton). Crispell, K. & Gomez, C. (1988) Hidden Illness in the White House (Durham, Duke University Press). Dampier, W. (1952) A History of Science and Its Relations with Philosophy & Religion 4th edn (Cambridge, Cambridge University Press). Dearing, B. (1981) Literary images as stereotypes, in: D. Biklen & L. Bailey (Eds) Rudely Stamp’d: imaginal disability and prejudice (Washington, DC, University Press of America). Edelman, M. (1985) Political language and political reality, PS, 18, pp. 10–19. Elkins, T. & Andersen, H. (1992) Sterilization of persons with mental retardation, The Journal of The Association for Persons with Severe Handicaps, 17, pp. 19–26. Ellis, H. (1927) The Task of Social Hygiene, 2nd edn (Boston, Houghton Mifflin). Ferguson, P. & Ferguson, D. (1992) Sex, sexuality, and disability, The Journal of The Association for Persons with Severe Handicaps, 17, pp. 27–28. Fernald, W. (1912) The burden of feeblemindedness, Journal of Psychoasthenics, 18, pp. 90–98. Ferster, E. (1966) Eliminating the unfit—is sterilization the answer?, Ohio State Law Journal, 27, pp. 591–633. Forman, M. & Hetznecker, W. (1982) Physician and the handicapped child: dilemmas of care, The Journal of the American Medical Association, 247, pp. 3325–3326. Fredericks, B. (1992) A parents’ view of sterilization, The Journal of The Association for Persons with Severe Handicaps, 17, pp. 29–30. Gelb, S. (1989) Not simply bad and incorrigible: science, morality, and intellectual deficiency, History of Education Quarterly, 29, pp. 359–379.

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Gochros, H. & Gochros, J. (Eds) (1977) The Sexually Oppressed (New York, Association Press). Goddard, H. (1912) The Kallikak Family: a study in the heredity of feeble-mindedness (New York, Macmillan). Gould, S. (1985) The Flamingo’s Smile: reflections in natural history (New York, W.W. Norton). Hahn, H. (1992) Disability and rehabilitation policy: is paternalistic neglect really benign?, Public Administration Review, 73, pp. 385–389. Hahn, H. (1983) Paternalism and public policy, Society, March/April, pp. 36–46. Hahn, H. (1985a) Disability policy and the problem of discrimination, American Behavioral Scientist, 28, pp. 293–318. Hahn, H. (1985b) Toward a politics of disability definitions, disciplines, and policies, The Social Science Journal, 22, pp. 87–105. Haller, M. (1963) Eugenics: hereditarian attitudes in American thought (New Brunswick, Rutgers University Press). Handberg, R. (1989) Talking about the unspeakable in a secretive institution: health and disability among supreme court justices, Politics and the Life Sciences, 8, pp. 70–73. Heifetz, L. (1989) From Munchausen to Cassandra: a critique of Hollander’s “euthanasia and mental retardation”, Mental Retardation, 27(2), pp. 67–70. Herr, S. (1984) Issues in Human Rights (New York, Young Adult Institute). Higgins, P. (1980) Outsiders in a Hearing World: a sociology of deafness (Beverly Hills, Sage). Hollander, R. (1989) Euthanasia and mental retardation: suggesting the unthinkable, Mental Retardation, 27(2), pp. 53–62. Holtzman, N. (1989) Proceed with Caution: predicting genetic risks in the recombinant DNA era (Baltimore, Johns Hopkins University Press). Hubbard, R. (1990) The Politics of Women’s Biology (New Brunswick, Rutgers University Press). Kaeser, F. (1992) Can people with severe mental retardation consent to mutual sex?, Sexuality and Disability, 10, pp. 38–42. Kleck, R. & Dejong, W. (1983) Physical disability, physical attractiveness, and social outcomes in children’s small groups, Rehabilitation Psychology, 28, pp. 79–91. Laughlin, H. (1922) Eugenical Sterilization in the United States (Chicago, Psychopathic Laboratory of the Municipal Court of Chicago). The Legal Rights of Persons with Epilepsy (1985) 5th edn (Landover, MD, Epilepsy Foundation of America). Longmore, P. (1985) Screening stereotypes: images of disabled people, Social Policy, Summer, pp. 31–37. Los Angeles to decide on letting blind and handicapped on juries (1976) The New York Times, 18 October, p. 53. Lusthaus, E. (1985) ‘Euthanasia’ of persons with severe handicaps: refuting the rationalizations, Journal of the Association on Severe Handicaps, 10, pp. 87–94. Macklin, R. & Gaylin, W. (Eds) (1981) Mental Retardation and Sterilization: a problem of competency and paternalism (New York, Plenum Press). Mazumdar, P. (1992) Eugenics, Human Genetics, and Human Failings: the Eugenics Society, its sources and its critics in Britain (New York, Routledge). Mehan, H., Hertweck, A. & Meihls, J. (1986) Handicapping the Handicapped: decision making in students’ educational careers (Stanford, Stanford University Press).

Eugenics and disability discrimination 89 McCall, R. (1984) Developmental changes in mental performance: the effect of the birth of a sibling, Child Development, 55, pp. 1317–1321. Meile, R., Shanks-Meile, S. & Spurgin, M. (1989) Changes in the care and treatment of ‘feeble-mindedness’: a political-economic interpretation, paper delivered at the Meeting of the Society for Disability Studies, Washington, DC, June. Melnick, R. (1985) The politics of partnership, Public Administration Review, 45, pp. 653–660. Merrick, J. (1989) Federal intervention in the treatment of handicapped newborns: Baby Doe regulations and the 1984 child abuse amendments, Policy Studies Review, 8, pp. 405–419. Miringoff, M. (1989) Genetic intervention and the problem of stigma, Policy Studies Review, 8, pp. 389–404. Miringoff, M. (1991) The Social Costs of Genetic Welfare (New Brunswick, Rutgers University Press). Murdock, C. (1974) Sterilization of the retarded: a problem or a solution?, California Law Review, 62, pp. 917–945. Nelkin, D. & Tancredi, L. (1989) Dangerous Diagnostics: the social power of biological information (New York, Basic Books). Nixon, H. (1985) Organizational subversion in voluntary rehabilitation associations for disabled people, American Behavioral Scientist, 28, pp. 347–366. Owen, M. (1985) A view of disability in current social work literature, American Behavioral Scientist, 28, pp. 397–403. Pfeiffer, D. (1985) Affirmative action and the unemployment of disabled persons, Proceedings of the 1985 AHSSPPE Conference, pp. 254–256. Pfeiffer, D. (1987) Civil rights with clout: the disabled citizen in Massachusetts, in: S. Hey, G. Kiger & J. Seidel (Eds) Impaired and Disabled People in Society: structure, processes and the individual (Salem, OR, The Society for Disability Studies and Willamette University). Proctor, R. (1988) Racial Hygiene: medicine under the Nazis (Cambridge, MA, Harvard University Press). Rafter, N. (1988) White Trash: the eugenics family studies, 1877–1919 (Boston, Northeastern University Press). Rothstein, M. (1992) Genetic discrimination in employment and the Americans with Disabilities Act, Houston Law Review, 29, pp. 23–42. Sackett, R. (1991) Terminating parental rights of the handicapped, Family Law Quarterly, 25, pp. 253–273. Sanderson, S. (1990) Social Evolutionism: a critical history (Cambridge, Basil Blackwell). Scott, R. (1981) The Making of Blind Men: a study of adult socialization (New Brunswick, Transaction Books). Sheldon, K. (1982) Communication to vocational rehabilitation colleagues, December. Smith, J. (1985) Minds Made Feeble: the myth and legacy of the Kallikaks (Rockville, MD, Aspen Systems Corporation). Snyderman, M. & Rothman, S. (1989) The IQ Controversy, the Media, and Public Policy (New Brunswick, Transaction). Starr, R. (1982) Wheels of misfortune, Harper’s, January, pp. 7–15. Stepan, N. (1992) “The Hour of Eugenics”: race, gender, and nation in Latin America (Ithaca, Cornell University Press). Sternberg, R. & Gardner, H. (1984) Testing intelligence without IQ scores, Phi Delta Kappan, 65, pp. 694–698.

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Waddington, C. (1972) Biology, in: C.B. Cox & A. E. Dyson (Eds) The Twentieth Century Mind, Vol. 1, chap. 10 (London, Oxford University Press). Weindling, P. (1989) Health, Race, and German Politics Between National Unification and Nazism, 1870–1945 (New York, Cambridge University Press). Weingart, P. (1989) German eugenics between Science and politics, Osiris, 2d Series, 5, pp. 260–282. Weiss, S. (1987) The race hygiene movement in Germany, Osiris, 2d Series, 3, pp. 193–236. Wells, K. (1983) As laws and attitudes change, the retarded are entering society, The Wall Street Journal, 15 February, pp. 1, 20. Wertz, D. & Fletcher, J. (1989) Fatal knowledge? Prenatal diagnosis and sex selection, Hastings Center Report, May/June, pp. 21–27. Westbrook, M. & Nordholm, L. (1986) Effects of diagnosis on reactions to patient optimism and depression, Rehabilitation Psychology, 31, pp. 79–94. Wilson, D. (1986) The high human price to pay for abortion, The Boston Globe, 29 June, p. A23. Wolfensberger, W. (1975) The Origin and Nature of Our Institutional Models (Syracuse, Human Policy Press). Wolfensberger, W. (1981) The extermination of handicapped people in World War II Germany, Mental Retardation, 19, pp. 1–7. Wolfensberger, W. (1989) The killing thought in the eugenic era and today: a commentary on Hollander’s essay, Mental Retardation, 27(2), pp. 63–66. Wright, B. (1985) Disabling Myths About Disability (Chicago, National Easter Seals Society). Zola, I. (1985) Depictions of disability—metaphor, message, and medium in the media: a research and political agenda, The Social Science Journal, 22, pp. 5–17.

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The social model of disability and the disappearing body Towards a sociology of impairment Bill Hughes and Kevin Paterson Department of Social Sciences, Glasgow Caledonian University

Abstract What is the case for and how would one begin to construct a sociology of impairment? This paper argues that the realignment of the disability/impairment distinction is vital for the identity politics of the disability movement. The body is at the heart of contemporary political and theoretical debate, yet the social model of disability makes it an exile. The transformation of the body from a reactionary to an emancipatory concept implies a sociology of impairment. This paper explores the contribution that post-structuralism and phenomenology might make to this end.

Introduction In the latter part of the twentieth century, disabled people, in the context of a flexible post-Fordist economy, have formed themselves into a new social movement, and have inaugurated a struggle for emancipation from social oppression and exclusion (Oliver, 1990). The disability movement has successfully politicised social and physical space by drawing attention to the ways in which dominant, non-disabled values and practices constitute vast tracts of space as no-go-areas. On the other hand, the same social values and practices constitute ‘special’ venues as spaces of exclusion or dumping grounds for disabled people. The response to impairment in modernity has been essentially anthropoemic: disabled people have been cast in the role of the other and cast out; imprisoned by what Foucault (1967) called “the great confinement” and excluded from and denied access to many of the key sites of power and privilege. The challenge to disablism, oppression and exclusion has produced the new politics of disablement (Oliver, 1990) which includes, as its intellectual expression, the social model of disability. In focusing on the ways in which disability is socially produced, the social model has succeeded in shifting debates about disability from biomedically dominated agendas to discourses about politics and citizenship. However, debate about the body and impairment is beginning to re-emerge within the disability movement (Shakespeare, 1992; Vassey, 1992; French, 1993; Shakespeare & Watson, 1995a,b; Oliver, 1995,

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unpublished paper). This is a highly contentious debate since it tugs— somewhat disconcertingly—at the key conceptual distinction which was at the heart of the transformation of disability discourse from medical problem to emancipatory politics. This paper is a contribution to this debate. It argues for a sociology of impairment and discusses two theoretical perspectives (post-structuralism and phenomenology) which may be used to make a contribution to the development of a sociology of impairment. The social model of disability proposes an untenable separation between body and culture, impairment and disability. While this has been of enormous value in establishing a radical politics of disability, the cartesianized subject that it produces sits very uneasily in the contemporary world of identity politics. This paper is an internal critique: it argues not for the supercession, but for the expansion of the social model and it proposes an embodied, rather than a disembodied, notion of disability. This paper seeks to enter into a theoretical lacuna which impairs the social model with respect to its treatment of embodiment. It does not suggest that the disability movement or disabled people have ignored the experience of impairment. On the contrary, there is a significant body of literature which engages with narratives of this order either in the form of lay accounts (see, for example, Morris, 1991a; Oliver et al., 1988) or in the form of sociological texts which draw—largely though not exclusively—on interactionist perspectives (see, for example, Hales, 1995; Swain et al., 1993). Furthermore, it is an irresistible fact that impairment enters into the experience and the politics of disability and is central to the lives of disabled people. Forms of resistance, and the struggle for bodily control, independence and emancipation are embodied. Yet while impairment is present in practice and in the narratives which reflect it, it remains theoretically embryonic. The social model—in spite of its critique of the medical model—actually concedes the body to medicine and understands impairment in terms of medical discourse. To recapture this lost corporeal space without returning to the reactionary view that physicality determines social status, the social model requires to mount a critique of its own dualistic heritage and establish, as an epistemological necessity, that the impaired body is part of the domain of history, culture and meaning, and not—as medicine would have it—an ahistorical, presocial, purely natural object.

The sociology of disability and the sociology of the body: contradictory trajectories In the past decade or so sociology has discovered the body (Turner, 1984, 1992; Featherstone et al., 1991; Synnott, 1993; Shilling, 1993; Falk, 1994; Scott & Morgan, 1993). It seems ironic that during the same time period, sociologically informed studies of disability have seen fit to dispense with it. Just as social theory began to recognise the indebtedness of social organisation and process to

The social model of disability 93 the bodiliness of human actors and sought to transcend Cartesian dualisms, so, in a move diametrically opposed, the social model of disability cast physicality out into the discursive shadows. As a consequence, there has been little or no engagement between disability studies and the sociology of the body (Shakespeare & Watson, 1995a). Both were moving at roughly the same time in opposite epistemic directions. Sociology made a claim upon the body as part of the social and intellectual processes of somatisation which were clarifying themselves into what we now call—still with a little unease—post-modernity. The enlightenment values of rationality, truth and progress were collapsing into their own categorical emptiness, fast being replaced by a new lexicon which privileged desire, caprice, ephemerality, difference. The body stole into the light as something to grasp. It made no grand claims. The anti-foundationalism of contemporary thought found in the palpable mortality of the body—in the dust it would become—an image of its own relativism and tendency towards the nihilistic: post-modernity has celebrated the body as otherness, as that which cannot be wholly regulated and that which ultimately protests against the subordination of desire by reason. We can see this opposition between the satisfaction of the emotions through release versus the civilised regulation of passion in the interests of social order as a dominant theme of western philosophy over the last one hundred years. (Turner, 1994a,b, p. 17) If the pace of social change and the death of meta-narratives (Lyotard, 1984) delivered the intellectuals to nihilism, it also evoked the body, foregrounding the corporeal and the biological (not as singularly biological but) as social issues. The body was thrust at us as a vessel of conspicuous consumption, a site of political struggle (in languages as remote as feminism and fundamentalism), a project which in the infinitely malleable process of identity construction. The body became problematic. It acquired, as Foucault put it, a history. Terence Turner (1994a,b, p. 27) suggests that sociological naivety with respect to the physical is shattered by bodiliness arriving centre-stage in some of the most telling debates of the age: The body or embodied subject is the object of seduction by advertising, interpellation by semiotically loaded commodities, torture by a broad spectrum of political regimes, bitter conflicts over reproductive life and health care, struggles for the revaluation of alternate sexual identities, threats from new epidemic diseases, and the object of new technologies permitting the alteration of physical attributes hitherto accepted as naturally determined, including cosmetic surgery, asexual and extra-bodily fertilisation, multiple forms of intervention in the biological process of reproduction, the modification of genetic traits, and the artificial prolongation or curtailment of the span of life itself.

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Meanwhile, the sociological study of disability was attempting to escape the chains of an epistemological world in which medical dominance and the prominence of bio-psychological thought was evident. This was a world where disabled people were identified with their impairments and defined in terms of the difficulties of living, which were—according to the patois of biomedicine—the consequence of a dysfunctional body. The disability movement and its theoretical expression in the ‘social model of disability’ (Oliver, 1983, 1990) emerged in the 1980s. A critique of medical/individualistic approaches to disability was developed. The medical view that social restrictions for disabled people were a consequence of physical dysfunctions was overturned by a radical move which argued that people with impairments were disabled by a social system which erected barriers to their participation. Disability was not an outcome of bodily pathology, but of social organisation: it was socially produced by systematic patterns of exclusion that were—quite literally—built into the social fabric. The built environment, for example, was built for non-disabled people and the norms of construction are such that those with impairments may, and often do, find themselves excluded from a whole range of social spaces that non-disabled people take for granted. ‘The achievement of the disability movement’, writes Shakespeare (1992, p. 40) ‘has been to break the link between our bodies and our social situation and to focus on the real cause of disability, i.e. discrimination and prejudice. To make the claim that disability is a consequence of social oppression is to challenge the medical view that the biological body is the proximate cause of disability and the ultimate cause of handicap. This confrontation with biological reductionism produces a distinction which is central to the theory and politics of the disability movement. The distinction is between impairment and disability, where the former refers to biological dysfunction and the latter to processes of social exclusion. The best definition of these two key concepts and the distinctive realms to which they refer is provided by UPIAS (1976, pp. 3–4): Impairment: Lacking part or all of a limb, or having a defective limb, organism or mechanism of the body; Disability: The disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairments and thus excludes them from the mainstream of social activities. The shift to a social oppression model of disability consigns the bodily aspects of disability to a reactionary and oppressive discursive space. So much so that, ‘to mention biology, to admit pain, to confront our impairments’, writes Shakespeare (1992, p. 40), ‘has been to risk the oppressors seizing on evidence that disability is really about physical limitation after all’. As a consequence, the body has disappeared from disability discourse: the irony is, that this has happened at the very point in the history of sociology when a sociology of the body

The social model of disability 95 has become fashionable. The fact that sociology has come to entertain the body as an object of analysis is indicative of a decisive shift within the discipline towards post-cartesian theoretical perspectives. Just as the sociology of disability has embraced a dualistic approach, sociological theory is focused on antidualistic perspectives like post-structuralism and phenomenology. In the social model, the body is rendered synonymous with its impairment or physical dysfunction. That is to say, it is defined—at least implicitly—in purely biological terms. It has no history. It is an essence, a timeless, ontological foundation. Impairment is therefore opposite in character to disability: it is not socially produced. With respect to the body and impairment, the social model makes no concession to constructionism or epistemological relativism: it posits a body devoid of history. It also posits a body devoid of meaning, a dysfunctional, anatomical, corporeal mass obdurate in its resistance to signification and phenomenologically dead, without intentionality or agency. This implicit notion of the body which is produced by the emphatic distinction between impairment and disability is ‘the kind of body to which we have been accustomed in scholarly and popular thought alike’, that is, one which is: typically assumed to be a fixed, material entity subject to the empirical rules of biological science, existing prior to the mutability and flux of cultural change and diversity and characterised by unchangeable inner necessities. (Csordas, 1994, p. 6) Indeed, there is a powerful convergence between biomedicine and the social model of disability with respect to the body. Both treat it as a pre-social, inert, physical object, as discrete, palpable and separate from the self. The definitional separation of impairment and disability which is now a semantic convention for the social model follows the traditional, cartesian, western meta-narrative of human constitution. The definition of impairment proposed by the social model of disability recapitulates the biomedical ‘faulty machine’ model of the body. The problem of mind/body dualism is reproduced by the distinction between disability and impairment. The biological and the cultural are pulled apart. As radical social theory tries to put a closure on the pervasive re-enactment of a rationalist distinction that (everywhere) becomes a denial of the body and desire, radical disability theory proposes a disembodied subject, or more precisely a body devoid of history, affect, meaning and agency. It was once said of pain that it ‘is never the sole creation of our anatomy and physiology’. On the contrary, ‘it emerges only at the intersection of bodies, minds and cultures’ (Morris, 1991a,b, p. 1). The same might also be said of impairment, yet the social model of disability has, in effect, exiled impairment from sociological consideration. Impairment is consequently entrenched in the biomedical and reduced to its dysfunctional anatomo-physiological correlates. Yet impairment is more than a medical issue. It is both an experience and a

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discursive construction. It has phenomenological parameters, and it can be analysed as an effect of discourse and language (Arney & Bergen, 1983). The argument for a sociology of pain expressed by Bendelow and Williams (1995, p. 159) can, in our view be applied equally to impairment: ‘Pain . . . needs to be reclaimed from exclusive biomedical jurisdiction and relocated at the juncture between biology and culture’. This relocation is essential for a sociology if impairment and a sociology of impairment is essential for the development of a social theory of disability. The social model of disability has not entertained debates which problematise the body, be they phenomenological, post-structuralist, feminist or others which have arisen through the new sociology of the body. Culture, the social, flux and movement are assigned to the concept of disability and the realm of oppression; that which is fixed and has constancy is assigned to the body by means of the concept of impairment. This dualism cannot be maintained. ‘Neither our personal bodies nor our social bodies may be seen as natural’ writes Donna Haraway (1991, p. 10), ‘in the sense of existing outside the self creating process of human labour’. In harbouring an essentialist, natural standpoint relative to the body the social model of disability creates a conceptual barrier to the development of a sociology of impairment and creates a disembodied notion of disability.

The social model of disability and the medicalisation of impairment The theoretical move made by the social model of disability—annexing impairment and disability to domains of absolute distinction—involves a debiologisation of discourse about disability. This is an emancipatory theoretical move. Yet in making the move, the body as a social and historical construct, and as a site of meaning and purposive human action is lost. Debate about the body is silenced. With respect to the social model de-biologisation means an end to debate about the body. Yet for the sociology of the body the same process inaugurates debate. While the social model of disability rejects debate about the body per se, the sociology of the body supersedes the body qua biology and, in so doing, opens up the sociological investigation of the flesh. The distinction between disability and impairment de-medicalises disability, but simultaneously leaves the impaired body in the exclusive jurisdiction of medical hermeneutics. While the sociology of the body seeks to challenge the biomedical monopoly over knowledge about the body, the social model of disability concedes it. Oliver (1995, pp. 4–5) argues that: ‘Disablement has nothing to do with the body’ and that ‘impairment is in fact nothing less than a description of the physical body’. The body is, in effect, reduced to impairment and illness, and left to the handicraft of the doctor. The body qua physical object belongs to a realm that is radically distinct from the politics of social space. ‘The conceptual issues underpinning this . . . debate’ writes Oliver (1995, p. 6), ‘is about

The social model of disability 97 determining which aspects of disabled peoples lives need medical or therapeutic interventions, which aspects require policy developments and which require political action’. The sharp distinction between impairment and disability creates a series of binary opposites which constitute theoretical territories with clearly marked boundaries. Each binary couple (below) excludes its opposite but includes those other conceptual terrains which inhabit the same horizontal axis: The biological impairment the body medicine therapy pain the medical model

The social disability society politics emancipation oppression the social model

Thus, for the social model of disability, the body—reduced to impairment— finds itself, inescapably, in the jurisdiction of medicine. The relationship of disabled people to their bodies is mediated by medicine and therapy, and has nothing to do with policy and politics. This dualistic approach produces a theoretical rigidity which involves the medicalisation of disabled peoples bodies and the politicisation of their social lives. There is a theoretical closure around the relationship between sociology and the body which makes a sociology of impairment, unthinkable. Disability thinking is unable to transgress the identity it has established between impairment, the body and biology. For example, David Hevey (1993, p. 119) argues that new social movements galvanise around issues of debiologisation and that this has been the case for ‘women and blacks and gays and lesbians’ who are shifting their view away from the body and onto society. In fact, the radical posture of the 1990s is precisely the reverse. The women’s movement in the shape of feminist theory has spilt seas of ink in reworking and collapsing the sex/gender distinction and ‘queer theory’—particularly in Judith Butler’s capable hands (1993)—is developing a new ontology, at the heart of which is an explication of the nature of the discursive construction of the body. These approaches not only liberate the social theory from the biological body— as Hevey suggests—they also liberate the body for social theory. Radical social theory has become very conscious of the body and embodiment figures strongly in the politics of new social movements. Contemporary identity politics surface and are played out on the surfaces of ‘somatic society’ (Turner, 1992, 1994a,b). ‘Our major political preoccupations’, writes Bryan Turner (1994a, p. 28) ‘are how to regulate bodies within space, how to monitor the surface of bodies, how to regulate embodiment, how to regulate on the attentions between bodies’. Politics is bio-politics. The tyrannies of postmodern times are aesthetic: tyrannies of slenderness (Chernin, 1983); tyrannies of perfection (Glassner, 1992).

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Tyrannies of perfection are particularly relevant to a politics of disablement. The logic which aborts a foetus on the grounds of imperfection, the body Fascism endemic in the representations of the hyperreal and the snide prejudices that underpin the construction of the fashionable and the beautiful are at the heart of contemporary biopolitics. We would argue, that a politics of disablement has to be fought out on this terrain, as well as in the political spaces of modernity. One of the arguments for the case for a sociology of impairment rests on the exponential growth of cultural politics, and the need for radical strategies to engage with it and mobilise against its tyrannical tendencies. However, where would one begin to construct the theoretical basis of a sociology of impairment? The argument so far has been that the sociology of the body could help the social model of disability to escape its reluctance to give impairment a sociological agenda. What we propose to do—briefly—in what follows is discuss what we believe to be the most promising theoretical points of departure for a sociology of impairment, namely post-structuralism and phenomenology. Both of these theoretical perspectives are explicitly anticartesian and as such constitute the body as a sociological problem.

Post-structuralism and the body Language and metaphor are vehicles for making sense of bodily sensations and actions. In order to turn sensation into sense or meaning, language is necessary. Without language, one cannot make sense of an impairment or the bodily sensations that constitute it. Post-structuralists take this argument one step further. Insofar as they argue that we should understand language in terms of its effects, they suggest that somatic sensations themselves are discursively constructed. In this view therefore, impairment is fully cultural and the body is an outcome of social processes (Foucault, 1979, 1980). In this view, language or knowledge is power and power inscribes itself on bodies: ‘Power’, writes Foucault (1980, p. 39) ‘reaches into the very grain of individuals, touches their bodies and inserts itself into their actions and attitudes, their discourses, learning processes and everyday lives’. The idea that the body is an historically contingent product of power has had a forceful impact on feminist debates about the relationship between sex and gender (Haraway, 1991; Butler, 1993; Moore, 1994). Feminists have been able to use post-structuralism as a point of departure for a critical theory of embodiment in which the symbolic and metaphorical richness of the flesh helps to provide a map of patriarchal cultural discourses. It has also been used as a springboard to explore hitherto unthinkable and unspoken desires which constitute the becoming of new post-patriarchal forms of femininity and the sexualisation of hitherto uncolonised spaces (Grosz & Probyn, 1995). One can see in this mirror possibilities for other oppressed bodies. The extent to which impairment can be re-represented (displaced from its association with the grotesque and its role as the other relative to aesthetic ideals about the body) and reconstructed (in terms of pride and positivity as opposed to a site for the existential

The social model of disability 99 fears of the non-disabled community) could be a matter of considerable importance for the development of a cultural politics of identity. Foucault takes issue with conventional sociology—and by implication with the social model of disability—because the body as a focus of analysis has been, for the most part, absent and where present, it has assumed the form of a natural body, one that is devoid of history and culture. Foucault places the body at the centre of his work (Turner, 1984; Shilling, 1993). He conceives of it as both an object of knowledge and a target for the exercise of power. He explores the ways in which it is rendered docile and productive, and therefore politically and economically useful by the various techniques and technologies of power (Foucault, 1979). For Foucault, the human subject in modernity is constituted by disciplinary techniques of bio-power which structure, produce and optimise the capabilities of the body, enhancing its economic utility and ensuring its political docility. Clearly, a Foucaultian history or a genealogy of impairment/disability would be a valuable vehicle for mapping out the parameters of the social construction of impairment and examining the way in which ‘regimes of truth’ about disabled bodies have been central to their governance and control. The regulation of the sexuality of disabled people would be a particularly fruitful field for the Foucaultian gaze. Despite the importance of Foucault’s work for contemporary social theory, the use of it in disability studies is relatively scarce. Work by Arney & Bergen (1983), Liggett (1988), Casling (1993), Marks (1994), Shakespeare (1995) and Chadwick (1996) are central texts in this rather limited, but growing pantheon. In commensurate concepts of the body have been at the heart of this (mutual) neglect. Foucault’s challenge to the instrumental, objective, pre-social view of the body clearly carries an implicit critique of the social model of disability. The essentialism of the latter and the relativism of the former make theoretical exchange unlikely and difficult. Indeed, it is only in the context of difference and heterogeneity becoming issues and sources of tension within the disability movement that relativism has shown itself. As the undifferentiated we, common to many new social movements, becomes strained by factionalism, then relativism has a breeding ground. The growing sense that post-structuralism may be of theoretical value to the disability movement is, therefore, hardly surprising. The women’s movement embraced it as a way of making sense of the differences within its own ranks. It was painful, inevitable and, finally, fruitful. Post-structuralism can be useful in theorising impairment outwith a medical frame of reference. If medical language produces impaired bodies, then it can be deconstructed. Medicine is the sole master of the language of impairment and it acquires this sovereignty through its power to name bodily dysfunctions. Meaning follows the name (or diagnostic label), and its iteration and reiteration produce a particular genus of body with its appropriate signs, symptoms, behaviour and normative expectations. The power of the name penetrates the flesh and maps out for it a performance (Butler, 1993). Impairment, in other words, is a product of discursive practices; like sex it is an effect, rather than an

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origin, a performance rather than an essence. The re-iterative power of discourse perfects the performance so that the body not only becomes the materialisation of its diagnostic label, but also its own set of constraints and regulations. In this post-structuralist view, impairment is no longer a biological fact, but a discursive product. We learn from Nietzsche, that to name something is to determine its essence. The disability movement knows this. The eclipse of ‘handicap’ is an important moment in the recognition of the power of discourse. The use of the concept ‘non-disabled’ to reverse the stigma of ‘otherness’ and throw it back at the oppressor is a second example of the development of a lexicon that helps to sustain the process of emancipation. Post-structuralism encourages this radicalism with respect to corporeal as well as social categories. It makes the sociological problematisation of impairment discursively possible, in a way that the social model with its essentialist view of the body has been unable to do, to date. Although post-structuralism provides a serious attempt to interrogate the social nature of the body and may provide useful insights for a sociology of impairment, the nature of the body it promotes is, on close investigation, something of a phantom. This argument is clearly articulated by Shakespeare & Watson (1995a). They argue that the sociology of the body, largely because of its domination by post-structuralism and post-modernism, actually loses the palpable body that it seeks to explain. Post-structuralism replaces biological essentialism with discursive essentialism. The body becomes nothing more than the multiple significations that give it meaning. Post-modern consciousness actually annihilates the body as a palpable, natural material object. The body and the sensate—in effect—disappear into language and discourse, and lose their organic constitution in the pervasive sovereignty of the symbol. Foucault’s concept of bio-politics robs the body of agency and renders it biologically barren. The body becomes a surface to be written on, to be fabricated by regimes of truth (Lash, 1991). At the end of the trail that leads away from the sensate and sensuous materiality of the body is the work of Baudrillard. In tracing the ‘precession of simulacra’, Baudrillard (1983) suggests a slippage and even a gradual emasculation of the real. He writes in his strange and compelling travel guide to America that, ‘When the real is no longer what it used to be nostalgia assumes its full meaning. There is a proliferation of myths of origin and signs of reality; of second hand truth, objectivity and authenticity’ (1988, p. 67). Indeed, for Baudrillard, the social is no longer ‘real’. It may have had a real referent during ‘the golden age of bourgeois representative systems’ (1983, p. 67), but no longer. Modernity has put paid to the social. In the contemporary world the social is a simulacrum. People are their representations; bodies collapse into mythical discourses and signs. Politics becomes a series of televisualised carnivals. Baudrillard offers an interpretation of the contemporary as a series of ends; end of the social; end of representation; end of the commodity as a form that points toward something real and material.

The social model of disability 101 One might also add, the end of the body as a physical object and its dis-incarnation into a hologram (hollowgram?), a digitalised image or hallucination that has floated free from its anchor in space and time. As Frank (1991, pp. 64–65) puts it: ‘As I read Baudrillard, bodies no longer exist. . . . As the body enters hyperreality, the anchor of corporeality is cut away’. The theoretical elimination of the materiality of the body seems of little value to the disability movement. Shakespeare & Watson (1995a, p. 16) argue that an ‘ethnography of physicality’ would be of immense value to the disability movement. Indeed, reducing the body and its sensations to the point where they disappear leaves no theoretical space for impairment or for the haptic experience in which individuals feel their presence in the world and the sensibility of themselves in touch with materiality. As Bryan Turner (1984, p. 250) has argued, post-structuralism in general and Foucault in particular, fail ‘to provide an adequate phenomenology of the body’. Indeed, Foucault ‘abandons the idea of the body as a sensuous potentiality. . . . Embodiment is more than conceptual’. It is to this deficit of post-structuralism—the phenomenological body—that we now turn to examine other possible theoretical basis for a sociology of impairment.

Impairment and the phenomenological body It is beyond the scope of this paper to map out a phenomenological theory of impairment. However, it is possible to give an adumbrated account of some of the potential merits of such an approach. The point of this sketch will be, therefore, to demonstrate that the body—be it impaired or not—is an experiencing agent, itself a subject (Merleau-Ponty, 1962) and therefore a site of meaning and source of knowledge about the world. The impaired body is a ‘lived body’. Disabled people experience impairment, as well as disability, not in separate Cartesian compartments, but as part of a complex interpenetration of oppression and affliction. The body is the stuff of human affliction and affectivity as well as the subject/object of oppression. The value of a phenomenological sociology of the body to the development of a sociology of impairment is that it embodies the addition of sentience and sensibility to notions of oppression and exclusion. Disability is experienced in, on and through the body, just as impairment is experienced in terms of the personal and cultural narratives that help to constitute its meaning. Impairment and disability meet in the body not as the dualistic clash of inner and outer phenomena, but insofar as impairment structures perceptions about disability and disablement is part of the ‘felt world’. Most importantly, the (impaired) body is not just experienced: It is also the very basic of experience. The body is—as Nick Crossely (1995, p. 48) following Merleau-Ponty puts it—‘our point of view on the world’. Disability is, therefore, experienced from the perspective of impairment. Ones body is ones window on the world. Jenny Morris (1991) has complained that the social model of disability denies the embodied experiences of pain and affliction which are integral to the

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lives of many people with impairments. A standard response to this complaint is that pain is an issue for medicine, not politics and that the disability movement can do nothing about pain, but a lot about oppression. The assumption which severs the bodily experience from the social experience, pain from politics is, however, open to critique because pain—like impairment—is clearly far more than a carnal sensation. The body is both sensational and meaningful. One could argue—even though the form of the argument is dualistic—that impairment is simultaneously experienced and embodied, and so, too, is disability. In the ‘felt world’ of phenomenology, the suffering body does not know its hurt by names or by origin. To be a body (the body as subject) is a purely experiential ontological condition in which the body is as it is—in pain, pleasure, joy or tears. This is the body as sensibility, motility and kinesthetics, what Husserl (1970, p. 106) called ‘the kinaesthetically functioning living body’, the realm of habitual, sensate being in which the body is the body-subject. To be a body is only one element of the experience of impaired bodiliness. In so being, one lives with the habitual and permanent presence of impairment. Its chronicity structures ones habitual experience of the lifeworld, but one also has a body: an object—as it were—appended to self, a flesh to reflect upon, pain and suffering, joy and laughter to affirm. In this context impairment escapes the habitual. It enters the realm of signification and its meaning arises from a symbiosis of personal embodied knowledge (personal knowledge about pain) and abstract cultural beliefs (social knowledge about pain). In the realm of signification, impairment becomes transformed into narratives about impairment. In such narratives, the corporeal, the personal and the cultural collapse into one another and the experience of impairment and of disability dissolve into a living unity: It is through narratives and theodicies of illness and pain that people attempt to understand and locate the meaning of their suffering and to effect a realignment between body, self and society. (Bendelow & Williams, 1995, p. 156) Kleinmann (1988) draws these physical, emotional and cultural processes together when he describes the experience of ‘disordered’ embodiment as a process produced by ‘the dialectic between cultural category and personal signification on the one side and the brute materiality of disordered processes on the other’ (1988, p. 55). Impairment (as physicality) cannot escape either cultural meanings and beliefs or its embeddedness in social structure. On the other hand, oppression and prejudice, not only belong to the political body, but become embodied as pain and ‘suffering’. The political and the physical both belong to the body in a sentient way, and yet both belong to the social as both discourse and material/spatial location. Phenomenology interrogates the ‘felt world’ in which the carnal, the emotional, the cognitive and the cultural are indistinguishable. ‘Lived experience’ is

The social model of disability 103 itself a concept that refers to the collapse of these analytically separable domains into a perceptual unity. For Kleinmann (1988, p. 55) the ‘felt world combines feelings, thought and bodily process into a single vital structure’. A phenomenological sociology of the body—what Nick Crossely (1995, pp. 43–44) calls a ‘carnal sociology of the body’—proposes a paradigm in which ‘the social is embodied and the body is social’. If we take this argument/aphorism, and redeploy it relative to a critical interrogation and collapse of the concepts of impairment and disability, it would read: disability is embodied and impairment is social. One way of illustrating what this might mean could be through a theoretical attempt to rescue the concept of ‘suffering’ from its reactionary and tragic associations. Disabled people—particularly, disabled militants—feel uncomfortable with the concept of suffering because, as a concept, it seems inextricably bound to a ‘personal tragedy model of disabilty’ (Oliver, 1991). Fatuous stereotypes about disabled people arise from this discourse. A phenomenological approach to suffering in which the reversibility of impairment and disability made it possible to think of suffering as a concept which reflected the mutual engagement of pain and oppression may be a way of reflecting the fact that disabled people do suffer. However, at the same time, by foregrounding of the concept of oppression, suffering is removed from its connotative association with a charitable response to tragedy. To recast suffering as a dialectical concept on the threshold between pain and oppression not only politicises the medical, but exposes the disablist basis of the charitable disposition. This example helps one think more clearly about disability (as oppression) becoming embodied as ‘suffering’. One could cite endless empirical examples, such as the way disablist employment practices—or any other structured form of social marginalisation—are experienced in the everyday world as—literally— hurtful. The reverse, however (the idea of impairment as social), perhaps requires a little more elaboration. It is clear that with respect to the narrativisation of impairment, it becomes social because it enters the world of discursive circulation and inter-subjectivity. Yet, in one sense, this takes impairment out of the ‘felt world’ of inter-mundane sensate experience, what Merleau-Ponty (1962) calls ‘intercorporeality’, that is where bodies become social bodies by virtue of the fact that they share the same space or field of perception. It is impairment— the body as material entity appropriated as language and symbol—that structures intercorporeal encounters. There is an elaborate, interpretive, psychosocial language available to make sense of this world of embodied encounters (stigma, prejudice, anxiety, etc.) and the myriad affects that play a role therein, but the social model has let it go on the grounds that it masks problems of politics and power (Oliver, 1990). It may be—as the face of politics changes in such a way that micro issues of identity and bio-power become prominent—that proprioception and intercorporeality can be pressed into radical service by the disability movement. The political impact of impaired bodies engaged in militant action cuts through prejudice

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like a knife. The political and social effects of impairment as action (on both disabled and non-disabled bodies) is one example of impairment as a social phenomenon which could be elaborated from a phenomenological perspective. In the social model, the body—reduced to impairment—is afforded only instrumental and objective status. It reproduces the empirical body of medical intervention. This highly restricted ontology eliminates the ‘lived body’ (leib) and as a consequence has nothing to say about the bodily point of view of disabled people or the embodied experience of prejudice and oppression, disadvantage and discrimination. If, for example, pride is the affect position that the impaired body takes on as part of a process of resistance to social oppression, then the social model is unable—within the logic established by its cartesianized worldview—to explain this militancy. Pride is not just an attitude determined by the experience of the social forces of oppression: it is a carnal style; a way of being in the world that embodies resistance to the tyrannies of aesthetics. It embodies a new politics of proprioception.

Conclusions Black pride, gay pride, disabled pride: they are all forms of a politics of proprioception; a contemporary politics of bodies, in which aesthetic, as well as political and economic, tyrannies are deconstructed by excluded groups. Late twentieth century identity politics embody a rejection of the universalising philosophies which characterised modernity (Zaretsky, 1995, p. 244) and have as their defining idea the view that ‘no superordinate group appellation . . . should be used without recognising the differences that exist within the aggregate—such differences as male and female, abled and disabled, native born and immigrant and so on’. This paper has argued that the social model of disability embodies an adequate theoretical basis for emancipatory politics but not for an emancipatory politics of identity. It is no accident that feminism and queer theory have embraced non-dualistic modes of thinking. To be a force in somatic society (Turner, 1992, 1994) one has to embrace body politics and, in so doing, collapse the traditional distinction between body and politics. Politics today, is as much about aesthetics as it is about economic and public life. In this context, a sociology of impairment becomes necessary. Social movements are discovering that it is no longer possible to think in cartesian/Kantian ways about the body and society. Social interaction is intercorporeal (Merleau-Ponty, 1962), as well as intersubjective. Contemporary politics is about the governance and surveillance of bodies, as individuals and as populations (Foucault, 1979). In this context, non-dualistic theoretical perspectives become more attractive. In a very tentative way, we have suggested that post-structuralism and phenomenology might be useful theoretical tools; means of reconstructing the impairment/disability distinction without opening discursive opportunities for reactionary elements. Of course, sociology has been critical of phenomenology on the grounds that it is apolitical and individualistic.

The social model of disability 105 These are serious concerns but must become part of the theoretical challenge that faces both sociology and radical disability studies. In order to progress disability politics through the realm of culture a repositioning of the disability/impairment distinction becomes a theoretical necessity. The sociology of the body provides a number of possible debates which may be useful to the disability movement as it begins to feel the vibrations of difference within its own ranks. The emergence of a case for a sociology of impairment is actually a manifestation of processes of identity differentiation among disabled people. Those who suggest that disability itself has become a superordinate group appellation and demand an engagement with the issues which arise from different identity positions—be they based on gender, ethnicity, sexuality, class, age or impairment—are simply taking the politics of identity, which was central to the development of the politics of disablement, to its logical conclusion. Identity is complex and problematic, and it is—in an individualistic and rapidly changing society—a precarious source of solidarity. Open recognition of this precariousness is useful. It mitigates against rather than encourages factionalism.

References Arney, W. & Bergen, J. (1983) The anomaly, the chronic patient and the play of medical power, Sociology of Health & Illness, 5, pp. 1–24. Baudrillard, J. (1983) Simulations (New York, Semitext(e)). Baudrillard, J. (1988) America (London, Verso). Bendelow, G. & Williams, S. (1995) Transcending the dualisms: towards a sociology of pain, Sociology of Health and Illness, 17, pp. 139–165. Butler, J. (1993) Bodies that Matter: on the discursive limits of sex (London, Routledge). Casling, D. (1993) Cobblers and song birds: the language and imagery of disability, Disability, Handicap & Society, 8, pp. 203–210. Chadwick, A. (1996) Knowledge, power and the disability discrimination bill, Disability & Society, 11, pp. 25–40. Chernin, K. (1983) Womanize: the tyranny of slenderness (London, The Women’s Press). Crossely, N. (1995) Merleau-Ponty, the elusive body and carnal sociology, Body & Society, 1, pp. 43–63. Csordas, T. (1994) Embodiment and Experience: the existential ground of culture and self (Cambridge, Cambridge University Press). Falk, P. (1994) The Consuming Body (London, Sage). Foucault, M. (1967) Madness and Civilisation (London, Tavistock). Foucault, M. (1979) Discipline and Punish (Harmondsworth, Penguin). Foucault, M. (1980) The History of Sexuality: Volume 1: an introduction (Harmondsworth, Penguin). Featherstone, M., Hepworth, M. & Turner, B. (1991) The Body: social process and cultural theory (London, Sage). Frank, A. (1991) For a sociology of the body: an analytical review, in: M. Featherstone, M. Hepworth & B. Turner (Eds) The Body: social process and cultural theory (London, Sage). French, S. (1993) Disability, impairment or something in between, in: J. Swain,

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V. Finkelstein, S. French & M. Oliver (Eds) Disabling Barriers—Enabling Environments (London, Sage). Glassner, B. (1992) Bodies: the tyranny of perfection (Los Angeles, Lowell House). Grosz, E. & Probyn, E. (1995) Sexy Bodies: the strange carnalities of feminism (London, Routledge). Hales, G. (Ed.) (1995) Beyond Disability: towards an enabling society (London, Sage). Haraway, D. (1991) Simians, Cyborgs and Women: the reinvention of nature (London, Free Association Books). Hevey, D. (1993) The tragedy principle: strategies for change in the representation of disabled people, in: J. Swain, V. Finkelstein, S. French & M. Oliver (Eds) Disabling Barriers—Enabling Environments (London, Sage). Husserl, E. (1970) The Crisis of European Sciences and Transcendental Phenomenology (New York, Harper Torchbooks). Kleinmann, A. (1988) The Illness Narratives: Suffering, Healing, and the Human Condition (New York, Basic Books). Lash, S. (1991) Genealogy and the body: Foucault/Deleuze/Nietzsche, in: M. Featherstone, M. Hepworth & B. Turner (Eds) The Body: social process and cultural theory (London, Sage). Liggett, H. (1988) Stars are not born: an interpretive approach to the politics of disability, Disability, Handicap and Society, 3, pp. 263–276. Lyotard, F. (1984) The Postmodern Condition (Manchester, Manchester University Press). Marks, G. (1994) Armed now with hope: the construction of the subjectivity of students within integration, Disability & Society, 9, pp. 71–84. Merleau-Ponty, M. (1962) Phenomenology of Perception, Translated by Colin Smith (London, Routledge). Moore, H. (1994) A Passion for Difference (Cambridge, Polity Press). Morris, D. (1991a) The Culture of Pain (Berkeley, University of California Press). Morris, J. (1991b) Pride against Prejudice (London, The Women’s Press). Oliver, M. (1983) Social Work with Disabled People (London, Macmillan). Oliver, M. (1990) The Politics of Disablement (London, Macmillan). Oliver, M. (1995) Defining impairment and disability: issues at stake. (Unpublished paper.) Oliver, M., Zarb, G., Silver, J., Moore, M. & Salisbury, V. (1988) Walking into Darkness: the experience of spinal injury (London, Macmillan). Scott, S. & Morgan, D. (Eds) (1993) Body Matters: essays on the sociology of the body (London, Falmer Press). Shakespeare, T. (1992) A response to Liz Crow, Coalition, September, pp. 40–42. Shakespeare, T. (1995) Disability, identity, difference, Leeds, Chronic Illness and Disability Conference. Shakespeare, T. & Watson, N. (1995a) Habemus corpus. Sociology of the body and the issue of impairment, Aberdeen, Quincentennial Conference on the History of Medicine. Shakespeare, T. & Watson, N. (1995b) The body line controversy: a new direction for disability studies?, Hull, Disability Studies Seminar. Shilling, C. (1993) The Body and Social Theory (London, Sage). Swain, J., Finkelstein, V., French, S. & Oliver, M. (1993) Disabling Barriers—Enabling Environments (London, Sage). Synnott, A. (1993) The Body Social: symbolism, self and society (London, Routledge). Turner, B. (1984) The Body and Society: explorations in social theory (Oxford, Basil Blackwell).

The social model of disability 107 Turner, B. (1992) Regulating Bodies: essays in medical sociology (London, Routledge). Turner, B. (1994a) Theoretical developments in the sociology of the body, Australian Cultural History, 13, pp. 13–30. Turner, T. (1994b) Bodies and anti-bodies: flesh and fetish in contemporary social theory, in: T. Csordas (Ed.) Embodiment and Experience: the existential ground of culture and self (Cambridge, Cambridge University Press). UPIAS (1976) Fundamental Principles of Disability (London, Union of Physically Impaired Against Segregation). Vassey, S. (1992) A response to Liz Crow, Coalition, September, pp. 42–44. Zaretsky, E. (1995) The birth of identity politics in the 1960s. Psychoanalysis and the public/private division, in: M. Featherstone, S. Lash & R. Robertson (Eds) Global Modernities (London, Sage).

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Differences, conflations and foundations The limits to ‘accurate’ theoretical representation of disabled people’s experiences? Mairian Corker Department of Education Studies, University of Central Lancashire

Abstract This article proposes that current approaches to theorising disability as a form of social oppression and their relationship to disabled people’s experiences are hampered by a modernist conceptual framework, which is increasingly at odds with the contemporary social world and with developments in theory-making as a whole. In order to bring disability theory closer to the lives of disabled people and the politics of new social movements, it is argued that the conceptual underpinnings of theory must be broadened beyond their current focus on structures, which view differences in terms of delimiting boundaries to one which includes an awareness of the relational, mediatory and performative role of discourse, and the increasing importance of local knowledges in shaping the social and political world.

Introduction Social analysts (should) think hard about which differences matter in social theory and politics, why, and the potential impact of particular theoretical and political strategies upon a range of social differences. (Seidman, 1997, p. x.) At a fundamental level it can be argued that all social theories have limitations. None is a total explanation of ‘reality’, though some, as Priestley (1998) suggests, claim to be. All are based on particular assumptions about such matters as the nature of knowledge, the nature of people and the nature of ‘reality’ itself. Academics in the field of disability studies aim to develop a social theory of disability, which comes as close as possible to explaining the ‘reality’ of disabled people. Nevertheless, like most theoretical work, this activity takes place within a framework, which has its own inherent assumptions about the relationship between theory and disabled people’s experience. A core strand in the developmental process—one which Colin Barnes suggests is the main purpose of

Differences, conflations and foundations 109 emancipatory research in the disability field—maintains that these assumptions are necessary when one is developing theory primarily for use by particular actors (disabled people), rather than for traditional scholarly purposes. Barnes (1992, p. 122) says that ‘emancipatory research is about the systematic demystification of the structures and processes which create disability, and the establishment of a workable “dialogue” between the research community and disabled people in order to facilitate the latter’s empowerment.’ However, pursuing this ideal may mean accepting that there will always be a gap between what any theory can offer, and what disabled people need to know in understanding and changing their lives—a gap that may be exacerbated by power and knowledge inequalities and by the research process. Theories are often designed from within particular perspectives conceived at particular times in history which do not reflect ‘disability’ or ‘society’ as we understand it today. Theories may not be addressed to issues with which all disabled people are concerned. In other words, social theories that are grounded in some notion of ‘real’ experience or which do their work by dichotomising experience and promoting some notion of a ‘real’ society outside of this experience, inevitably exclude other kinds of experience which are labelled as ‘subjective’ or ‘ideal’. Perhaps, more importantly, notions of social agency, outside of those that are simply contrary to the hegemonic ideal, are sidelined. These ‘realities’ will be of little use to those disabled people who feel their experience, beliefs and values have been rejected or to new social movements whose struggles hinge upon their articulation of a collective politic of resistance. This perspective may be seen to call into question the concept of collective ‘reality’ as a representational tool, but it will be argued that this need not be the case if we work within a framework that resonates with Lefebvre’s (1991) view that the localisation of the parts may support the unity of the abstraction. Indeed, the failure to adopt this ‘rule of thumb’ is my main argument with Priestley’s (1998) analysis of disability theory in terms of the different social models that have now emerged. There is not the space to critique Priestley’s ideas fully here, but much of his analysis concentrates on a perceived distinction between materialist and idealist approaches to explaining and understanding disability, which he further subdivides along nominalist/realist and individual/social dimensions. Such a framework was originally explored as far back as 1749 by Diderot in relation to disability and with much the same outcome. Jonathan Reé (1999, p. 39, and references therein) writes that ‘when the passionately materialistic young Diderot took up arms against idealism’, he accepted the equation between materialism and visual experience, and labelled idealism as an ‘extravagent system, which must have been invented by the blind’ (Diderot [1749], in Verniere [1964], p. 114). Significantly, Reé adds that direct experience of blind people ‘was to deepen Diderot’s sympathies [for them], and by his logic, for idealism also. Priestley, in spite of emphasising that the different approaches are interrelated, not least in terms of disabled people’s experience, makes no attempt to challenge the boundaries between them because his analysis excludes those approaches to theorising disability which

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work at this level. He therefore affirms the various dichotomies, particularly through the language of privileging in which his final comments are couched, and thus reproduces the historical see-sawing between materialism and idealism that has persisted for centuries. Seidman’s regret (1998, p. 187) that it is necessary ‘to think that social structure and institutional dynamics can be comprehended by another retreading of Marxism—as if the critique of Marxism’s materialist and class reductionism by sociologists, semioticians, critical theorists, poststructuralists, feminists and others had never happened,’ seems pertinent in this context. An alternative perspective might place emphasis on a critical social theory that enquires into the nature of the gap between disability theory and experience by asking which experiential differences matter and how might these differences be conceptualised as a social relation. And, if indeed the practical value of disability theory in the eyes of disabled people depends on how we bridge this gap, how might this be achieved? This article is concerned an analysis of these questions from a feminist perspective which seeks to explore the productive space between modernist dichotomies, as it is contextualised by the ‘condition’ of postmodernity (Lemert, 1997), which I believe to be the substance of social life in the late twentieth century. It highlights the tendency of malestream disability theory and politics to address difference within self-imposed limitations of censorship, silencing, subordination and negative evaluation, which has resulted in the policing of disabled people’s experience. It aims to illustrate the problem of viewing theories as figures of experience and social life, raising serious questions about theory production and whether, in its efforts to produce a collective notion of disability, disability studies has inadvertedly reproduced the kind of representations and theoretical structures that it has historically claimed to challenge. In doing this, however, I want to reiterate my agreement with Oliver and others in that it is not helpful to use such a critical analysis to reinforce a divide between activism and intellectualism, practice and theory, and personal and political. The (materialist) social model, which as Oliver (1996b, p. 52) emphasises in not a social theory of disability, along with Union of Physically impaired Against Segregations’ (UPIAS) Fundamental Principles of Disability, which claims to be (1976, p. 15 and 20), should stand as the first and most significant attempts to produce, and interpret the concepts of disability and impairment from within the experience of disabled people, and remains of very considerable political capital and pragmatic value. However, instead of trying ‘to stretch the social model further than it is intended to go’ (Oliver, 1996b, p. 52) with totalising claims about its explanatory power, we should view it as one strand in an emerging social theory of disability and consider that there may well be other strands, some of which have not yet been fully developed.

Experience and the condition of post-modernity Disability scholars engaged in theoretical work seem to agree that these questions are important. Oliver (1996a, p. 45) rightly places these questions in the

Differences, conflations and foundations 111 context of social research as a whole, suggesting that ‘the problem is that most social research has tended to privilege methodology above experience and, as a consequence, does not have a very good track record in faithfully documenting that experience.’ In another publication, he adds that ‘few of those who seek to speak for us or write about our lives take seriously the need to represent our views, our lives and our struggles accurately’ (Oliver, 1996b, p. 20). He views experience in the context of internal criticisms that have emerged from disabled people themselves around ‘the place of impairment, the incorporation of other oppressions and ‘the use and explanatory power of the social model of disability’ (Oliver, 1996b, p. 40). Whilst Oliver admits to being ‘skeptical’ about these criticisms, he believes that they could be addressed through an analysis of ‘impairment’ and ‘chronic illness’ (Barnes & Mercer, 1996). Though I respect where he is coming from, I do not share his skepticism, nor do I think these issues are best addressed in the way he suggests, because this indicates that disability theory, like social theory in general, is resisting the conceptualisation of difference as an increasingly significant and central axis of subjectivity and social life. ‘Difference troubles’ (Seidman, 1997), as demonstrated in the contemporary proliferation of particularistic political identities, can be seen as an important outcome of the totalising ‘truths’ and ‘facts’ about ‘normality’, a universal class, the notion of a privileged race or an abstract principle. As Joan Scott (1992, p. 24) has noted [Experience] has occasioned a crisis for orthodox history, but multiplying not only stories, but subjects, and by insisting that histories are written from fundamentally different—indeed irreconcilable—perspectives or standpoints, no one of which is complete or completely “true”. Documenting the experience of others in this way has been at once a highly successful and limiting strategy for historians of difference . . . on the one hand they acknowledge that “evidence only counts as evidence and is only recognised as such in relation to a potential narrative, so that narrative can be said to determine the evidence as much as the evidence determines the narrative” (Gossman, 1989, p. 26) On the other hand, their rhetorical treatment of evidence and their use of it to falsify prevailing interpretations, depends on a referential notion of evidence which denies that it is anything but a reflection of the real. Castells (1997) has described this crisis in terms of two conflicting trends now shaping the world: globalisation and identity. The information revolution and the restructuring of capitalism have induced what he calls ‘the network society’, producing the globalisation of strategic economic activities, flexibility and instability of work, and a culture of real virtuality. Laclau (1994, pp. 1–2) believes that the implied changes to social structure and power relationships ‘lead to a new awareness of the complex mechanisms through which all identity—and all social reality—is constructed; indeed it leads to an awareness of its

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deeply ambiguous conditions of existence.’ He suggests that this ‘. . . involves a retreat from an object to its conditions of possibility . . . which widens and diversifies the strategies that it is possible to develop within the social’. However, disability theory, particularly that emerging from the USA (see, for example, Linton, 1998), tends to reflect modernist notions of collective identity and social relations. These issues must be of relevance if a theory can legitimately claim to be a reflection of ‘contemporary social organisation’ (UPIAS 1976, p. 14, italics added). In other words, if ‘contemporary social organisation . . . takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities’ (UPIAS, 1976, p. 14), surely the corrollary is also true? A social theory which takes little account of changing relations of macro- and micro-contexts will have particular implications for the relevance of that theory to disabled people’s experience. To give one example, Wendy Brown (1998, p. 323) writes that: Ours is a time of diarrhetic speech and publication—from the unfathomable amount of technical, political, commercial, and personal information that travels the Internet to the opinionated ignorance that animates much of A.M. talk radio . . . today, anyone’s political opinion is worthy of radio discussion and everyone’s personal story is worthy of television exposure or even a memoir. The implied blurring of the boundaries between public and private suggests that everyone’s life can now be subject to the same kind of scrutiny that disabled people’s lives have always been, and this would have important implications for how the disability movement views the relationship between the personal and the political. It increases the significance of the mass media, (re)presentation and performativity as pervasive forms of political capital in systems of production. Furthermore such change may impinge more on some disabled people’s lives than on the lives of others, as I will explore below. There are signs that the disability movement is alert to this as BCODP (British Council of Disabled People) ‘consults with’ the Government and seeks to ‘tighten itself up and make itself more democratic’ (Chair of BCODP, Bob Findlay, quoted in Disability Now!, April 1999, p. 13). If this is the case, then disability theory now lags behind disabled people’s experience.

Foundations and conflations Taking up Scott’s earlier point, I want to suggest that it is perfectly possible to retain UPIAS’ concept of disability as a form of social oppression whilst problematising the foundations on which it is built—the conceptual distinction between disability and impairment. In doing so, I would suggest that the way in which this distinction has been framed and subsequently incorporated into

Differences, conflations and foundations 113 disability theory embraces several assumptions, which mirror historically the framing of the relationship between theory and experience. To illustrate this, I want to consider some important examples of these assumptions, and the methodological approaches and structures that reinforce them. In Keywords, Raymond Williams (1983) suggests that the term ‘experience’ has been used in a number of alternative senses. Most of these meanings are founded on notions of subjective testimony as immediate, true and authentic, but Williams notes that the twentieth century has brought a quite different meaning, which refers to influences external to individuals—social conditions, institutions, forms of belief or perceptions—‘real’ things outside them that they react to without drawing on internal processes. This mirrors the distinction between disability as it was defined before and after UPIAS’ and DPI’s reconstructions. But these two senses of ‘disability’ continue to co-exist, occupying contradictory spaces within disability studies and dominant discourse bout nationally and internationally. However, all these definitions, though they take different views of experience as internal or external, subjective or objective, tend to establish the prior existence of ‘identity’. Identity is then seen as a unitary ‘body’ onto which different societies impose different norms related to personality and behaviour, for example (Nicholson, 1995, p. 41). Writing within feminism, Nicholson (1995, p. 42) suggests that this view, which she calls ‘biological foundationalism’, has enabled many feminists to retain the idea of ‘biological determinism—that the constancies of nature are responsible for certain social inadequacies—without having to accept one of the crucial disadvantages of such a position from a feminist perspective—that such social constancies cannot be transformed.’ In other words (unquestioned and unproblematised) distinctions of nature, at some basic level, ground or manifest themselves in human identity. In contemporary disability theory, biological foundationalism links two positions, that which views ‘disability identity’ as both a social construction and as common across cultures, and that which sees impairment as conceptually distinct from disability. For this to be maintained, impairment must be viewed as unitary ‘body’, and any causal relationship between impairment and disability must be dismissed. Hence, the position that ‘there is no such group as people with disabilities; there are people with impairments and disabled people, but they are quite distinct things: linguistically, politically and theoretically’ (Darke 1998, p. 224). Underlying this is an assumption that each side of a series of dichotomies—for example, individual/society, subjective/objective, material/ discursive, nature/culture—is a discrete and autonomous entity. This assumption is reinforced by a methodology which makes use of conflations of meaning along an evaluative dimension which allows the positively evaluated term to be made the ‘proper object’ of theory, and enables processes such as oppression and empowerment to be viewed in terms of the direction of influence. The ‘proper object’ of disability theory is frequently referred to as disabled people’s collective ‘reality’, but this brings with it another set of problems. Oliver (1996b, p. 147 and references therein) writes:

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Within this kind of framework it is easier to conceive of this direction of influence—what Oliver describes as ‘emphasis’—as flowing one way, and in this sense, a disability theory that is premised on the social model can be seen as a philosophical and pragmatic inversion of that which embraces the individual model whilst retaining the safety of the modernist tradition. Though the UK version of the social model apparently sees disability as only a consequence of material relations (Oliver, 1990), and though Oliver himself acknowledges that ‘language and its use is not just a semantic issue; it is a political issue as well’ (Oliver 1996a, p. 74), his modernist conception of material relations sidelines language and, therefore, is not, as suggested by Darke (1998), fully inclusive of sociocultural factors. Collective ‘reality’ in these circumstances reduces experience to some abstract common denominator. Now, there may well be some circumstances in which this kind of reductionism can assume relevance in disabled people’s lives. For example, Barnes (1996, p. 37 and 43), talking about his personal experience of visual impairment and disability says that: In practical terms my impairment has caused me few real difficulties—it causes me no pain and, hitherto, is likely to remain relatively stable. The problems I have encountered have all been socially created—mainly as a consequence of the experience of segregated special education and my subsequent perceptions, whether real or imagined, of society’s treatment of people with this kind of impairment . . . the experience of impairment is an area where I believe generalizations are possible and indeed appropriate. I agree with Barnes that an impairment which is stable, predictable and visible (in the sense that the person who has the impairment is open about it and that disability politics is a politics of visibility) can disappear to such an extent that it can be viewed as ‘nothing less than a description of the physical body’ (Oliver, 1996b, p. 35). Impairment can only be an object only insofar as it establishes a system of relationships with other objects—in particular, other impairments and non-impairment. This may, moreover, be the basis of a valid distinction between impairment and chronic illness, two terms which are regularly conflated. In these circumstances, ‘generalisations’ may be possible, though Barnes himself warns of difference troubles in the sphere of impairment. However in his suggestion that disability can be referenced to the particular ‘kind of impairment’ he implies a particularistic relationship between impairment and disability, seeming to blur the conceptual distinction between them.

Differences, conflations and foundations 115 This illustrates the limits of modernism—the problems with a conceptual tool that effectively dichotomises experience in terms of the different meanings it is attributed. It actually becomes difficult not to talk about blindness without reference to particularistic interpretations of disability oppression that blind people experience—for example, lack of beeper crossings—because to do so would threaten the binary. At the same time, when visually impaired people suggest that there are some social restrictions which cannot be resolved by the application of principles that conceptualise impairment as the ontological foundation of disability (French, 1993), this is viewed as accidental, and such (auto) biographies are marginalised from disability theory. In their everyday ‘talk’, disabled people often allude to a complex existence that occupies the space between health and illness, disability and ‘normality’, impairment and empowerment and nature and culture, to give a few examples. However, disability theory continues to dichotomise these things in a way that does not permit exploration of the space between. Theory recreates the divisions between impairments, and between impairment and other ‘biological’ foundations of human character. It preserves hierarchical social organisation instead of challenging the assumptions that underly it. For example, in examining the dichotomy between mind and body, theories of ‘embodiment’ (Shakespeare & Watson, 1995) and a sociology of ‘the body’ (Hughes & Paterson, 1997) serve largely to reinforce the foundational role of impairment by marginalising the sensual (Shilling & Mellor, 1996), discourse (Corker, 1998a, b, 1999; Corker & French, 1999), and the emotions (Williams & Bendelow 1996). Thus, Shilling & Mellor (1996, p. 2) dispute Anthony Gidden’s conceptualisation of embodiment: Gidden’s attempts to overcome the structure/agency dualism in sociology (a dualism he views as providing the major obstacle to the discipline’s development) are based on a mind/body dualism which limits the sorts of structures he can deal with analytically . . . People comprise both minds and bodies in Gidden’s analysis of modernity, but are essentially minds for most of their lives and tend only to be shaped by their sensual bodily responses when there is a breakdown in their reflexive attempts to understand or engage with the world. (Italics added). Citing Jenks (1995) they note that this reflects the tendency within sociological frameworks to both prioritise the visual sense and to conflate seeing with knowing. ‘The eye is taken as a neutral corridor through which information passes direct to the brain for purposes of reflexive monitoring, and evaluation, and subsequent incorporation into the routines of daily action’ (Jenks, 1995, p. 5). These difficulties are reflected at the level of the collective in the work of Shakespeare & Watson (1998, p. 13, italics added) who . . . follow those who argue that disabled people are a distinct social group in a similar way to black people, lesbians and gays. It is suggested that disability

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Mairian Corker is a structural relationship between people with impairment and a discriminating society. Consequently, it is not useful to separate various impairment groups—people with visual impairment, with physical impairment, with learning difficulties—as has been the practice of charities, schools and so on. This is an important insight into the collectivity of the disability experience: however, it should not be allowed to obscure real differences between disabled people, which may be about gender, ‘race’, sexuality and class. Nor should it be used to deny the individuality of disabled people, in the tradition of objectifying disability through terminology such as ‘the disabled’.

Shakespeare and Watson argue that ‘real differences’ are based on the socially constructed categories of disability, gender, ‘race’, sexuality and class, which precisely because they are constructed, embrace a fluidity that cannot mark a collective identity. By way of silence, they maintain, uncontested, the boundaries between deaf people, visually-impaired people and people with physical impairments in the same way that schools, charities and so on do, because the experiential differences and similarities that such people describe are not ‘real’. This seems to rest on an assumption that people with impairments would perceive impairment differences in the same way as ‘charities, schools and so on’ and in particular that they would view their experience of impairment and oppression as immutable. The literature is full of references to the fact that most people with impairments, along with most disabled people, do not view the current individual/medical classification of impairment to be useful in analysing their experience. Moreover, many of these accounts are based on other important impairment-related distinctions which redefine the notion of ‘collectivity’. Contemporary disability theory does seem able to accommodate the idea that people with fluctuating impairments, such as multiple schlerosis find forms aimed at assessing need for the Disability Living Allowance to be a Foucaultian exercise in disciplinary power (Shildrick & Price 1996). However, it is less able to deal with areas of disabled people’s experience which are, by their very nature, in a state of constant flux. As an example, it is very clear that many deaf people see impairment and disability in terms of language and communication, rather than impairment as the physical fact of hearing loss, which continues to be the main educational and legal classificatory system. They do not, in their personal narratives, talk about how much they can ‘hear’ as opposed to how much they can ‘know’, ‘understand’ and ‘interpret’. Similarly, some visuallyimpaired people do not describe disability in terms of lack of beeper crossings, but as a lack of access to non-verbal communication. These experiences seem to have a common thread, but it is not one which weaves its way through disability theory. In summary then, a presupposed internal coherence or unity of impairment requires a stable and oppositional category of ‘normality’. This institutionalised ‘normality’ both requires and produces the commonality of each ‘voice’ of impairment that constitutes the limit of possibilities within an oppositional

Differences, conflations and foundations 117 binary disabled/non-disabled system. ‘The old dream of symmetry’ (Irigaray, 1985) is presupposed, reified and rationalised. An unproblematised impairment as a foundational character is produced by the regulation of attributes along culturally established lines of coherence. Homogeneity can only exist because of the exclusion of the possibility that ‘historically irreducible interests divide and define . . . communities’ (Rooney, 1989, pp. 5–6). This is analytically very similar to the critique of the category ‘woman’ by Denise Riley, who writes that it masks the likelihood that . . . [experiences] have accrued to women not by virtue of their womanhood alone, but as traces of domination, whether natural or political . . . because of its drive towards a political massing together of women, feminism can never wholeheartedly dismantle “women’s experience”, however much this category conflates the attributed, the imposed and the lived, and then sanctifies the resulting mélange. (Riley, 1988, pp. 99–100.) In this context, Oliver’s (1996b) suggestion that we need a separate ‘sociology of impairment’ is worrying. In the case of the concept ‘disability’ there is no clear distinction between the formulation of ‘disability’ and its relationship to impairment produced by different gazes, since old and new versions co-exist. A distinction can only be granted by context, but ‘disability’ theorists are becoming increasingly slippery in their use of the term ‘disability’ and their audiences have to be alert for slippages in meaning. This problem, I would argue, is reinforced by the making of a semantically ambiguous term—disability—the ‘proper object’ of ‘real’ disability theory.

A post-modern turn This return to ‘proper objects’ moves us in a different direction, reminding us that though modernism remains a potent force in social theory, it is not now the only force. It is widely acknowledged—if somewhat grudgingly and often in language that borders on the cynical—that social theory has taken a ‘postmodern turn’. In such circumstances, if the concept of impairment were to be opened up within a ‘separate’ sociology of impairment, as Oliver (1996a) suggests, we may encounter a similar situation to that described in the recent work of Judith Butler (1997a), which examines the problematic relationship between gender and sex. She applies an argument against certain trends within contemporary theory on the construction of social identities and the tendency to foreground one determinant of the body over others in her analysis of this relationship. . . . the methodological domain of women’s studies is that which ‘includes any research that treats gender (whether female or male) as a central category of analysis. The parenthetical reference to female or male suggests that these terms are interchangeable with the notion of gender, although

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Mairian Corker conventional formulations of the sex/gender distinction associated ‘sex’ with female or male—or with the problematic of a continuum between them—and ‘gender’ with the social categories of men and women. This . . . suggestion that gender might be understood as equivalent to ‘female or male’ thus appears to rest on a conflation of sex with gender. (Butler, 1997a, p. 4.)

If impairment is positioned in place of sex and disability in place of gender, it is possible to see how a separate sociology of impairment, most especially one which is grounded in medical sociology, might end up working against a social theory of disability, rather than enhancing our understanding of the relationship between disability and impairment. Why might the post-modern turn be important for disability theory? Some disability theorists argue privately that disability would disappear if all structural barriers were to be removed through changes to systems of production, architecture, transport and more effective use of technology and information systems, for example. The resulting move towards social inclusion and the increased visibility of people with impairments would lead to the improvement of attitudes. However, in the context of the above examples, and in the light of our knowledge about the continued oppression of people from black and ethnic minorities and women—both highly ‘visible’ populations that have had legal protection against discrimination for over twenty years—it could equally well be argued that the removal of structural barriers would leave the attitudinal and discursive dimensions of social relations intact, together with their implications for social agency. Both of these dimensions are unpredictable and fluid, and mediate a complex relationship between disability and impairment. When Sally French (1993) suggested that a large part of her experience as a visually impaired person was not ameniable to social manipulation alongside the observation that interpreters do not eliminate the problems of communication experienced by deaf people, something which I have explored in some detail (Corker, 1998a, b, 1999), she was not arguing for the maintenance of boundaries between impairments. I think, as the title of her work ‘Disability, impairment or something in between’ suggests, that she recognised a commonality of experience between people with visual and hearing impairments, for example, which was not articulated in a disability theory framed by binary oppositions. She was perhaps arguing that this relationship could only be explained within a framework which viewed the individual/society dichotomy as dialogic and saw disabled people as social agents. Indeed, Oliver himself acknowledges that experience cannot be dichotomised or simplified in his reference to ‘walkers, nearly walkers and non-walkers’, which is part of a brilliant materialist analysis of the application of sociology to walking (Oliver, 1996a, p. 100). These issues should surely be part of our theoretical work? However, to achieve this, we have to visualise a disability theory which is prepared to problematise the notion of impairment as a ‘biological foundation’. In my view, French’s analysis was an early attempt to articulate one dimen-

Differences, conflations and foundations 119 sion of Leonard’s (1997) ‘paradigm of communication’. It is significant, however, that she was greeted with the response that her ‘definitions were wrong’ and that she had ‘not quite grasped what disability is’, and consequently felt her experiences were being dismissed as ‘disabilities without apparent solution’, ‘compartmentalized . . . [with] someone else being the judge of which are and which are not worthy of consideration’. On one level, Rockwell’s (1996, p. 85) assessment of this position seems accurate: It is ludicrous to assert that to know something partially is not to know something at all; the more harmful direction that derives from this position is not the claim of relativism, but the failure to understand that any embodied form of apprehension or perception is partial. To deny such partiality is to have a distorted sense of one’s own omnipotence and an investment in retaining any social authority that accompanies it. However, on another, Wendy Brown (1998, p. 318) warns, . . . the language of political identity is today experienced as a policing language, even and especially by those whom the language intended to figure for emancipation . . . While “disqualified” discourses are an effect of domination, they nevertheless potentially function as oppositional when they are deployed by those who inhabit them. However, when annexed by those unitary discourses to which they are in putative opposition, these discourses become a particularly potent source of regulation, carrying as they do, intimate and detailed knowledge of their subjects. To accept French’s position would be to take a post-modern turn in theory, but would it, as might be argued by some, led to chaos? As indicated above, a great deal might depend on how disability theory responds to difference and, in particular, how it determines which experiential and social differences matter. It was my own struggle with this which led me in the direction of French post-structuralist philosopher Jacques Derrida for theoretical explanation, though I accept that post-structuralism alone ‘cannot account for processes of subject and identity formation, the creation of solidarities, and collective political mobilisation’ (Seidman, 1998, p. 188). Derrida, like many of his contemporaries, engaged in a unremitting pursuit of binary oppositions, phenomenological essences and ‘ontological decidability’, which are the cornerstone of modernity. His work is invariably dense and difficult to read, but his basic premise is that words mean different things in different circumstances, depending on who is using them, when, and on what occasion, and upon the context. Even within a single sentence, the meaning of one word can only be determined retrospectively, as later words form the context for it—the word’s relationship to other words gives it its meaning. The identity of something is given by that which it is not, that which is absent from it—for example, darkness is ‘the absence of light’. Derrida (1976, 1978) coined the term différance,

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which in English loosely translates as ‘deferral’ to suggest that meaning and therefore knowledge is never stable. This implies that meaning can always be contested on the basis of différence (the French word denoting unlikeness or dissimilarity). The point about this is that . . . if presence always contains absence, there cannot be a neatly drawn line of opposition between these two notions. It is not that presence and absence are opposites, nor that there is either presence or absence, but rather that there is an inevitable defining of the one through the other: there is both presence and absence. (Sampson, 1989, p. 12.) Derrida argues that binary oppositions, in which one term is always given a more privileged position than its opposite, are typical of ideologies which deceive us into valuing one side of a dichotomy more than another, when in fact neither can exist without its other. Thus, the modernist project conditions us to think of the individual as primary and society as secondary, to view the mind as superior to the body, to value reason above emotion. Disability theory has responded with its own brand of radical modernism, which inverts this emphasis, placing it on society and corporeality, whilst retaining a focus on reason which re-produces ‘safe’ ideologies. To challenge this way of thinking, Derrida argues that it is necessary to take as our unit of study both what any given phenomenon is taken to be and what it appears to exclude. However, absences tend to be repressed and we forget that they are there, which Derrida emphasised in his choice of words because différance and différence cannot be distinguished from each other when spoken and each, therefore, implies the other. So, we need a methodology for highlighting how discourse relies upon these unstated absences. Derrida called this deconstruction and, as Lemert (1997, p. 44) emphasises, deconstruction ‘is not meant to be a sly cognate for “destruction”—though some of the words abusers jump to this conclusion because they view deconstruction all too simply as a “taking apart” of modernism. There is nothing destructive or, as is sometimes said, “nihilistic” about it.’ Whereas feminism and queer studies have embraced this idea, disability studies still views it with suspicion. Nevertheless, the much-used terms ‘breaking down barriers’ and ‘inclusion’, Shakespeare’s (1996, p. 108) references to the riskiness of an ‘us’ and ‘them’ approach and Oliver’s (1996b, p. 74) acknowledgement that ‘language may sometimes serve to obscure’ all have a distinctly Derridean feel. However, Derrida’s philosophy might make a distinction between Shakespeare & Watson’s (1998) idea of inclusion based on the coexistence of disabled people as a ‘social group’ in mainstream society, and ideas about inclusion which emphasise entry into those domains of mainstream society that are crucial for social reproduction in a way that leads to a complete restructuring of these domains (Corker, 1998a,b, 1999). The former notion, through its emphasis on différence; leaves social boundaries intact, whereas the latter uses Derrida’s concept of différance to transgress these boundaries and to

Differences, conflations and foundations 121 create a concept of social relations based on a public analysis of difference through sameness. The very fact that social models are called models suggests that the social worlds of disabled people can be represented in the language of knowledge and this is antipathetic to Derridean post-structuralism, where knowledge is discursive, a consequence, not a representation, of action in a ‘dynamically open, intertextual field of play’ (Lemert, 1997, p. 110). This links back to the earlier analysis of French’s ideas in relation to the space between disability and impairment because A discourse moves “to and fro” between received encodations of experience and the clutter of phenomena which refuses incorporation into conventionalized notions of “reality”, “truth”, or “possibility”.. . . Discourse, in a word is quintessentially a mediative enterprise. As such it is both interpretative and preinterpretative; it is always about the nature of interpretation itself as it is about the subject matter which is the manifest occasion of its own elaboration. (White, 1978, p. 4.) Here, the relationship between the cultural/structural and the material/discursive becomes the object of theorising—language acquires a performative dimension and the material acquires a discursive dimension. Thus, a critical analysis of the slippage in personal and social meaning that is created when we begin to examine the mutual constitution of disability and impairment more closely at the theoretical level can be actively employed in our political struggles.

Conclusions It is often argued that where theories are too complex or are designed for ex post facto explanation rather than for use by disabled people, they may lead to confusion and the paralysis of analysis. This is always a danger, if the complexity of life is overemphasised, and if the need to understand fully is placed ahead of the need to act effectively, because disabled people can be turned into interested spectators, rather than pro-active participants of a strong social movement. The aim of this article has been to emphasise that theories which reduce or simplify disabled people’s experience, particularly those which fail to conceptualise a dialogic relationship between disability and impairment, can have the same effect. To resolve some of these problems, I agree with Leonard (1997) that there is a need to add a ‘paradigm of communication’ rooted in discursive strategies to the Marxist ‘paradigm of production’ and its preoccupation with structure, which currently dominates disability theory. This need arises both from a changing society, which increasingly emphasises different forms of capital and from an awareness of changing meanings of disability that require the disability movement to engage in the expression in a politic of resistance that meets the information economy on its own terms. The addition of this paradigm would, in my view, open up political discourse to issues of language and difference and

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their relationship to the unequal distribution of knowledge. It would also allow us to address more fully the question of disabled people’s social agency, and the sticky issue of attitudes and discriminatory language, which cannot be explained within materialism alone. It is clear that a discursive paradigm would problematize the concept of disability as it is conceptualised within the (materialist) social model, since it would seem to emphasise that disability is produced in the relationships between impairment and oppression whereas in the social model, disability is the (collective) experience of oppression. However, set against this is the benefits that a critical, reflexive social theory of disability might have for the theorising of social oppression per se. Herein lies an implicit challenge to existing conceptualisations of emancipation and emancipatory research such as those outlined by Stone & Priestley (1996). There remains a sense in which this emancipatory paradigm reinforces existing political and social standpoints and knowledges, and recreates the relationship between élitist discourses of theorymaking and disability as a form of social oppression. Disabled people’s emancipation will not be complete without the creation of a space where we can ask theoretical questions about disability theory itself. This is the only way that we can know that our experience is being ‘accurately’ represented, and the only way that we can break the hierarchies of knowledge that are so significant in our oppression. For, as Judith Butler (1997b, p. 162) writes: The desire not to have an open future can be strong . . . This is one reason that asking certain questions is considered dangerous, and why we live in a time in which intellectual work is demeaned in public life, and anti-intellectualism marks a substantial part of the climate within the academy. Imagine the situation that a student of mine reports, that of reading a book and thinking, I cannot ask the questions that are posed here because to ask them is to introduce doubt into my political convictions, and to introduce doubt into my political convictions would lead to the dissolution of those convictions . . . To remain unwilling to rethink one’s politics on the basis of questions posed is to opt for a dogmatic stand at the cost of both life and thought. To suggest that particular arguments and particular experiences are ‘wrong’ is to create a position where theory rules disabled people’s experience, rather than one where theory grows from and is therefore flexible enough to respond to our experience. As with other social theories, the test of a social theory of disability’s strength will come from a rigorous analytical base and its ability to deal constructively with criticism, whether it be from disabled people themselves or from our self-interested oppressors and censors.

References Barnes, C. (1992) Qualitative research—valuable or irrelevant, Disability, Handicap &

Differences, conflations and foundations 123 Society, 7, pp. 115–124. Barnes, C. (1996) Visual impairment and disability, in G. Hales (Ed.) Beyond Disability: towards an enabling society (London, Sage Publications in association with The Open University). Barnes, C. & Mercer, G. (eds) (1996) Exploring the Divide: illness and disability (Leeds, the Disability Press) Brown, W. (1998) Freedom’s silences, in R.C. Post (Ed.) Censorship and Silencing: practices of cultural regulation (Los Angeles, Getty Research Institute). Butler, J. (1997a) Against proper objects, in E. Weed & N. Schor (Eds) Feminism Meets Queer Theory (Bloomington, Indiana University Press). Butler, J. (1997b) Excitable Speech: a politics of the performative (New York, Routledge). Castells, M. (1997) The Power of Identity (Oxford, Blackwell). Corker, M. (1998a) Deaf and Disabled or Deafness Disabled (Buckingham, Open University Press). Corker, M. (1998b) Disability discourse in a postmodern world, in T. Shakespeare (Ed.) The Disability Reader: social science perspectives (London, Cassell). Corker, M. (1999) New disability discourse, the principle of optimisation and social change, in M. Corker and S. French (Eds) Disability Discourse (Buckingham, Open University Press). Corker, M. & French, S. (Eds) (1999) Disability Discourse (Buckingham, Open University Press). Darke, P.A. (1998) Review of ‘Disability and the City: International Perspectives’ Sociology, 32, pp. 223–224. Derrida, J. (1976) Of Grammatology (Baltimore, John Hopkins University Press, translated by G.C. Spivak). Derrida, J. (1978) Writing and Difference (Chicago, University of Chicago Press). Diderot, D. (1749) Lettre sur les aveugles, in: P. Verriere (Ed.) (1964) Diderot Ouvres Philosophiques (Paris, Garnier). Fenton, M. (1989) Passivity to Empowerment (London, RADAR). French, S. (1993) Disability, impairment or something in between, in J. Swain, V. Finkelstein, S. French & M. Oliver (Eds) Disabling Barriers—Enabling Environments (London, Sage, in association with Open University) Gossman, L. (1989) Towards a rational historiography, Transactions of the American Philosophical Society, 79(3), p. 26. Hitchen, L. (1999) New time, new style, Disability Now!, April, p. 13. Hughes, W. & Paterson, K. (1997) The social model of disability and the disappearing body: towards a sociology of impairment, Disability & Society, 12, pp. 325–340. Irigaray, L. (1985) Speculum of the Other Woman (Ithaca, Cornell University Press, trans. Gillian. C. Gill). Jenks, C. (Ed.) (1995) Visual Culture (London, Routledge). Laclau, E. (1994) The Making of Political Identities (London, Verso). Lefebvre, H. (1991) The Production of Space (Oxford, Blackwell). Lemert, C. (1997) Postmodernism is Not What You Think (Malden, Blackwell). Leonard, P. (1997) Postmodern Welfare (London, Sage). Linton, S. (1998) Claiming Disability (New York, New York University Press). Nicholson, L. (1995) Interpreting gender, in S. Seidman & L. Nicholson (Eds) Social Post-modernism (Cambridge, Cambridge University Press). Oliver, M. (1990) The Politics of Disablement (Basingstoke, Macmillan).

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Oliver, M. (1996a) Defining impairment and disability, in C. Barnes & G. Mercer (Eds) Exploring the Divide: illness and disability (Leeds, Disability Press). Oliver, M. (1996b) Understanding Disability: from theory to practice (Basingstoke, Macmillan). Priestley, M. (1998) Constructions and creations: idealism, materialism and disability theory. Disability & Society, 13, pp. 75–94. Reé, J. (1999) I See a Voice: language, deafness and the senses—a philosophical history (London, Harper Collins). Riley, D. (1988) Am I That Name? Feminism and the Category of ‘Women’ in History (Basingstoke, Macmillan). Rockwell, H. (1996) An ‘other’ burlesque: feminine bodies and Irigaray’s textuality, Body & Society, 2, pp. 65–89. Rooney, E. (1989) Seductive Reasoning: pluralism as the problematic of contemporary theory (Ithaca, Cornell University Press). Sampson, E.E. (1989) The deconstruction of the self, in J. Shotter & K.J. Gergen (Eds) Texts of Identity (London, Sage). Scott, J.W. (1992) Experience, in J. Butler & J. Scott (Eds) Feminists Theorize the Political (New York, Routledge). Seidman, S. (1997) Difference Troubles (Cambridge, Cambridge University Press). Seidman, S. (1998) Are we all in the closet? Notes towards a sociological and cultural turn in queer theory, European Journal of Cultural Studies, 1, pp. 177–192. Shakespeare, T. (1996) Disability, identity and difference, in C. Barnes and G. Mercer (Eds) Exploring the Divide: illness and disability (Leeds, Disability Press). Shakespeare, T. & Watson, N. (1995) Habemus Corpus. Sociology of the body and the issue of impairment (Aberdeen, Quincentennial Conference on the History of Medicine). Shakespeare, T. & Watson, N. (1998) Theoretical perspectives on research with disabled children, in C. Robinson & K. Stalker (Eds) Growing Up with Disability (London, Jessica Kingsley). Shildrick, M. & Price, J. (1996) Breaking the boundaries of the broken body, Body & Society, 2, pp. 93–113. Shilling, C. & Mellor, P.A. (1996) Embodiment, structuration theory and modernity: Mind/body dualism and the repression of sensuality, Body & Society, 2, (4), pp. 1–15. Stone, E. & Priestley, M. (1996) Parasites, pawns and partners: disability research and the role of non-disabled researchers, British Journal of Sociology, 47, pp. 699–715. Union of Physically Impaired Against Segregation (UPIAS) (1976) Fundamental Principles of Disability (London, UPIAS). White, H. (1978) Tropics of Discourse (New York, Johns Hopkins University Press). Williams, R. (1983) Keywords (New York, Oxford University Press). Williams, S.J. & Bendelow, G.A. (1996) The ‘emotional’ body, Body & Society, 2(3), pp. 125–139.

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Is there a disability culture? A syncretisation of three possible world views Susan Peters College of Education, Michigan State University

Abstract Is there a disability culture? Or are disabled people simply individuals—or at best a socio/political minority group—striving to fit in to the dominant culture (whatever that is)? The author challenges Lois Bragg’s contention that Deaf Culture exists, but not Disability Culture. The paper first traces historically the different conceptualisations of culture, beginning with E. B. Tylor’s Primitive Cultures (1871) through to post-modern accounts by Kuper, Giroux and McLaren. Using a wide range of these concepts, three possible world views of disability culture are developed: Culture as Historical/Linguistic, Culture as Socio/Political, and Culture as Personal/Aesthetic. From these alternatives, a macro-sociological framework is set forth to evaluate each of these world views, as well as a set of ethical questions to consider in choosing which one might be most robust. The paper concludes with a proposal for a syncretized view of disability culture and asserts that the experience of disability culture is a thriving cross-cultural phenomenon which knows no national boundaries—and in particular, is not limited to Martha’s Vineyard and American Deaf people.

‘I am very proud to say I was born colored and crippled. Now I am black and disabled.’ (K. Gainer, 1992.) According to Fine and Asch (Nagler, 1993, p. 52), 74% of disabled Americans feel a common identity with one another and 45% see themselves as part of a minority, with a particular group consciousness and specific referent group. Yet, to some disabled people—both in the US and worldwide—disability is not necessarily central to their self-concept and self-definition. Still others speak of living multicultural lives. Others who are lesbian, or gay and disabled sometimes experience a ‘hopelessness of the heart’—belonging to several separate communities, but rarely finding acceptance in any (O’Toole & Bregnate, 1993). Some disabled people live in abject poverty and issues of culture take a back seat to economic survival. So the question becomes, is there a disability culture? Or are disabled people simply individuals—or at best a socio/political minority group—striving to fit in to the dominant culture (whatever that is)?

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However one thinks about culture, the fact remains, as Cheryl Marie Wade, a disabled woman poet puts it, ‘Many of us couldn’t fit into the mainstream view of the world if we wanted to—and some of us wouldn’t want to if we could’ (Younkin, 1989, p. 31). Furthermore, for most disabled people (including myself), disability ‘flavours’ everything we do, whether it is the main focus of our lives or not. Whether we come to see ourselves as ‘coloured’ or ‘black’ ‘crippled’ or ‘disabled’, these words describe an essential reality. But is there a disability culture within which this essential reality is expressed and/or transformed? My impetus for addressing the question of disability culture stems from a keynote address given by Lois Bragg at the Society for Disability Studies Annual Conference in Washington, DC (May, 1999). Lois Bragg is a member of the Deaf Community at Gallaudet University. In her address to the conference participants regarding the issue of disability culture, Bragg contended that in order for disabled people to claim a disability culture and therefore, a cultural identity, several requirements must be satisfied: 1 2 3 4 5 6 7

a common language; a historical lineage that can be traced textually (through archives, memorials and distinctive media/press publications); evidence of a cohesive social community; political solidarity; acculturation within the family at an early age (and/or in segregated residential schools and clubs); generational or genetic links; pride and identity in segregation from Others.

Bragg claimed that none of these requirements for a disability culture exist— with the exception of Deaf Culture. (Furthermore, some would argue that the Deaf are a linguistic minority and not a disabled minority.) At any rate, Lois Bragg’s address was followed by a debate in which several conference participants challenged her view. In this article, then, I challenge Bragg’s view and attempt to provide some counter-intuitive responses to the issues of disability culture and cultural identity. I welcome responses from the disability community at large—including the Deaf. My response to the question of disability culture has its roots in a paper I wrote in 1985 to satisfy the requirements of a minor in anthropology at Stanford University, USA. I argued then and still contend that disability culture not only exists, but is a thriving concept and lived experience in the hearts and minds of many disabled people. It is a cross-cultural phenomenon that knows no national boundaries and, in particular, is not limited to Martha’s Vineyard and American Deaf people. As Carol Gill puts it in the video, Vital Signs: Crip Culture Talks Back, ‘I believe very firmly in disabled culture—and if we don’t have one we should. We need it to survive as an oppressed minority, both physically and emotionally’ (Mitchell & Snyder, 1996). In developing the notion of disability culture and a unique cultural identity

Is there a disability culture? 127 for disabled people, I make several basic assumptions. Firstly, the meaning of culture, as well as processes of identity development through acculturation, are bound up in what I will call particular world views; i.e. views stemming from scholarly work internationally, based on commonly held ideologies and applicable cross-nationally. Secondly, each world view is essentialist in nature, as it is bound by the conventions of particular ideologies and discourses—that is, specific rules and values apply to form a coherent theoretical framework in each view of culture. Thirdly, no single view is more or less authentic. Fourthly, I recognise that limits are built in to all discourses on world views. The second point I shall make before discussing disability culture is that the topic is timely and necessary to move disabled people beyond discourses such as those of social model theories that are essentially discourses of critique, to discourses aimed at action and transformation. Discourses in the field of disability studies tend toward reactions to master narratives of the Other, without providing an alternative world view that would suit the lived experiences of disabled people. Claiming a cultural identity of our own moves us toward reclaiming ourselves from the Other, and establishes us as subjects and active agents of transformation beyond objectified and marginalised Others. In other words, what is needed is: 1 2

3

to refigure the map of difference inherent in the Other, to step outside of its binary oppositions (e.g., disabled/non-disabled); to decenter the discourse away from the dominant ethnocentric ablebodied cultural hegemony (which avoids its own cultural identity by focusing on the Other as its ticket to oppositional identity); to reconstruct these hegemonic boundaries in order to produce cultural meaning and subjectivity in our own image.

My own view of disability culture is syncretic: that is, the notion of culture as hybrid. ‘Every culture draws on diverse sources, depends on borrowings and is in flux’ (Kuper, 1999, p. 17). From this notion, a syncretism of disability culture exceeds the essentialist logic of a particular world view. Syncretism allows for an individual hybrid consciousness which maintains tactical solidarity while not being swallowed up by universal cultural patterns and norms. An individual with such a hybrid consciousness is a border crosser; i.e. one who blurs cultural, political or disability borders in order to adapt to different symbolic and material constructions of the world. I will argue that this syncretic view of disability culture is necessary for deconstructing the hegemonic maps of difference created by society, for establishing ourselves as subjects and for producing our own cultural meanings, subjectivities and images. This syncretisation responds to an observation by Clifford Geertz, a symbolic anthropologist whose The Interpretation of Cultures (1973) has greatly influenced contemporary world views of culture. Geertz points to the ‘interminable debate within anthropology as to whether culture is subjective or objective’. Geertz notes that this debate leads to ‘the mutual exchange of intellectual insults (“idealist”—“materialist”; “mentalist”—“behavioralist!”; “impressionist!”—

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“positivist!”)—and I would add “post-modernist!” I will argue that a more productive debate about culture should consider that each of these has something to offer, especially in considering disability culture. In the following sections, I first historically trace the general meaning of culture as developed within the fields of anthropology and sociology in order to unpack the traditional notions of culture. In tracing the historical understandings of culture, I draw mainly from the influential work of British and American scholars in the academy. I then describe three essentialist world views of disability culture: Culture as Historical/Linguistic, Culture as Social/Political, Culture as Personal/Aesthetic. In framing these world views, I draw from disability scholars such as Linton, Corker, Oliver, Fine and Asch, Roth, Hahn, Vernon, Chimedza, Mupindu and others. Each of these views correlates to some extent with one or more of the historical/traditional notions of culture. However, each world view is distinctive in its production of disability culture, as it is necessary to free ourselves from the yokes many of these notions have burdened us with in their traditional world views of disability. After setting forth each world view, I provide an analysis and critique, propose an alternative syncretic view of disability culture, and offer a set of ethical questions for choosing a particular world view.

Culture general frameworks: defining culture Until recently, the study of culture was the domain of anthropologists. Specifically, most scholars agree that the first influential definition of culture was set forth by E. B. Tylor, a British anthropologist. In Primitive Cultures (1871), Tylor defined culture as: . . . that complex whole which includes knowledge, belief, art, law, morals, custom, and any other capabilities and habits acquired by man [sic] as a member of society. (In Kuper, 1999, p. 56.) Early concepts of culture during the age of the Enlightenment distinguished material civilisation (good) from a spiritual culture (bad—consisting of prejudices, superstitions and stereotypes). However, most saw culture as Tylor did— an organic whole encompassing just about everything created by humans. This organic whole was characterised, however, as an ethnic heirloom: an individual was assumed to have a culture by birthright versus individuals who produced culture through meaning-making in the lived experiences of their every-day lives. As a result, a descriptive conception of culture developed that focused on classification of its constituent elements. This emphasis led Kroeber & Kluckhohn (1952) to publish a treatise in which they classified and categorised 164 definitions of culture globally according to: 1

descriptive definitions that emphasised enumeration of content (Tylor, Benedict, Boas);

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historical definitions that emphasised social heritage or tradition (Sapir, Malinowski, Parsons); normative definitions that emphasised rule or way (Kluckhohn); psychological definitions that emphasised adjustment or culture as a problem-solving device (Keller, Morris); structural definitions that emphasised patterning or organisation of culture through status, opportunity and privilege within societal institutions; genetic definitions that focused on products or artifacts of culture (Barnard).

From these categorisations, Kroeber and Kluckhohn derived several generally agreed upon features of culture. Cultures everywhere in the world were characterised by an integration of content and forms, historical processes, certain uniformities (especially language) and values. Bragg’s notion of Deaf culture falls within this conceptual framework. However, more recent historical analyses of the development of culture as a concept reject descriptive and categorical notions of culture as depicted or received, and instead develop definitions of culture as an enacted dynamic process. Kuper (1999) traces these enacted descriptions beginning with structuralist concepts of culture as developed by Chomsky and Levi-Strauss that emphasise institutional and organisational influences. These were followed by post-structuralist formations of culture exemplified by Clifford Geertz, beginning in 1968. Post-structuralist concepts of culture emphasised interpretivism, drawing on literary theory to develop the notions of culture as text and culture as a contested terrain. Along the way, Talcott Parsons contributed notions of culture as individual biologies coupled with personality. Franz Boas and Marshall Sahlins contributed notions of culture as historically conceived and perpetuated through economic processes. Ruth Benedict argued for a notion of culture as collective personalities. Renato Rosaldo developed conceptions of politics, history and conflict influenced by the psychodynamics of self. Finally, present-day post-modernist views of culture embrace Marxist theories, and are essentially historical and sociological. I will take some time to discuss post-structuralist views and post-modernist views of culture, as I see these views as most influential and germane to the issue of disability culture. In The Interpretation of Cultures, Clifford Geertz asserts that ‘the question as to whether culture is patterned conduct or a frame of mind, or even the two somehow mixed together’ is misguided (1973, p. 10). To Geertz, culture is symbolic action. Culture is also public, because meaning is public. Culture is a context of everyday lives, so that descriptions of culture must be cast in terms of constructions and interpretations to which people subject their experience. Furthermore, interpretations are necessarily ‘fictions’, or artifices of the imagination or ‘the informed logic of actual life’ (Geertz, 1973, p. 17). It is through social action that cultural forms find articulation. The study of culture, then, must tie symbolic forms to concrete social events. Using Geertz’ notion of

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culture, the thing to ask about disability (or impairment, or crippled or handicapped) is not what their ontological status is. The question to ask is what their import is—patronisation or pride, deviance or difference—and the webs of significance that are being spun through human agency about these conditions In other words, we should ask, ‘What is the importance assigned to disability?’ ‘By whom?’ In contrast, post-modernists view culture as essentially political. This view has spawned the new field of Cultural Studies. In this view, the symbolic conceptions of Geertz are combined with structural concepts that see the study of symbols in relation to socially structured contexts within which symbols are produced, transmitted and received. Furthermore, these contexts involve fields of interaction (a concept borrowed from Bourdieu) and social institutions that are both determined by processes of valorisation and capital resources (economic, cultural and symbolic). Peter McLaren, a Canadian-American sociologist, exemplifies this post-modernist view in his definition of culture: conditions of possibility mediated by relations of class, gender, race (McLaren, 1997). In this view, identities are fluid and transient and are linked to the politics of collective struggle. Under the rubric of ‘multi-culturalism’, culture is harnessed in a movement toward social justice. In the post-modernist view, cultural identity is embedded in relations of power, the politics of difference, community and democracy. From this perspective, the cultural is political, and therefore a terrain of struggle in which resistance is a basis for developing a cultural politics and anti-discriminatory ideology as part of a larger theory of difference and democratic struggle for justice, equality and freedom. In other words, postmodernists redefine culture ‘within multiple relations of difference that offer a range of subject positions from which people can struggle against ideologies of the Other and discrimination’ (Giroux, 1991, p. 233). The stance of many disability rights activists can be located within this view—particularly with respect to their emphasis on developing a cultural politics (such as Gliedman and Roth’s Unexpected Minority), their resistance against societal discrimination and their fight for social justice. As with those active in the disability rights movements, post-modernists argue that the dominant groups in society reduce minority culture to a discourse of the Other—who is said to lack any redeeming community traditions, collective voice or historical importance. These hegemonic discourses of the Other are formed in three traditions: the Judeo-Christian racist logic, the psycho-sexual racist logic, and the scientific racist logic. In terms of disability, the JudeoChristian logic sees disability as the curse of God. The psycho-sexual racist logic views disability as defecation, violation and subordination. The scientific racist logic regulates disability by standards of aesthetics and cultural norms. In contrast to these traditional discourses, the post-modernist view of culture typically holds the following viewpoints (Giroux, 1991): 1

the distinction between ‘elite’ culture and the culture of everyday life is rejected;

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boundaries for producing meaning and subjectivity are subject to reconstruction; difference is treated as a political, not a technical category; master narratives are rejected in favor or narratives of difference that are currently ‘submerged and dangerous memories that challenge white supremacist logic and recover the legacies of historically specific struggles against discrimination’ (Giroux, 1991, p. 229); the Other is problematised and subjected to critical analysis; the value of every day experiences as a source of agency and empowerment is emphasised.

Overall, the unifying philosophy of post-modernist views, as exemplified by disability rights movements, is ‘a faith in forms of social transformation that are attentive to the historical, structural, and ideological limits which shape the possibility for self-reflection and action’ (Giroux, 1991, p. 232). This philosophy points to solidarity, community and compassion. However, in the postmodernist view (as exemplified by McLaren) solidarity does not mean consensus, but recognises multiple antagonisms and struggles that characterise both the notion of the self and the wider social reality. In summary, concepts and definitions of culture vary widely, and the predominant world views of it have changed dramatically over time and in specific historical contexts. Furthermore, ‘culture’ is a subject that currently appears to be on everyone’s mind. We find books entitled, Culture Wars, The Culture of Complaint, The Culture of Disbelief. We read about school culture, gang culture, and popular culture. Everything, it seems has cultural roots—from politics to schooling to gangsta-rap. Claiming roots in a disability culture on the one hand should be easy— everybody has staked out a cultural claim to something, so why not disabled people? On the other hand, people with disabilities are a diverse group, claiming multiple and simultaneous identities whose borders shift and essential qualities seem to be in flux—even among disability scholars such as myself— creating the possibility for a syncretic view of disability culture. I will return to a detailed discussion of the cultural-general contributions for formalizing notions of a syncretic view of disability culture in my analysis. First, I will set forth three possible essentialist world views of disability culture. I begin with a discussion of the view of culture as Historical/Linguistic.

Culture as Historical/Linguistic Lois Bragg’s list of seven criteria that I enumerated in the beginning of this article is reminiscent of Kroeber and Kluckhohn’s descriptive definitions which attempt to enumerate discrete variables that constitute culture. This descriptive conception of culture is based on the notion of culture as ‘depicted’ or received, rather than an enacted dynamic process. I begin with this view of culture as depicted in order to confront the elements of culture Bragg enumerates and to

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challenge her contention that disability culture does not exist. These elements of culture as depicted are useful starting points by which we can then show how they become enacted. In describing this world view, my examples will be distinctively American, as that is the culture I have predominantly experienced. These examples are also meant to be illustrative, not exhaustive. I am certain, however, that disabled people from other countries will be able to add to this list.

A common language Language is of great importance to disabled people. To begin with, the language used in texts—whether TV shows, newspaper articles, scholarly journals or speeches—has been held under close scrutiny by disabled people world-wide. Nuances between the use of ‘disabled people’ or ‘people with disabilities’ have been debated cross-culturally. Most disabled people object to such linguistic terms as ‘confined to a wheelchair’, ‘deaf and dumb’, or ‘mentally retarded’, recognising these terms as symbols of degradation, patronisation and dehumanisation. We have developed our own lexicon or dictionary of terms to counter these linguistic defamations: ‘wheelchair user’, Deaf (with a capital D) and cognitively challenged. These terms connote action, pride and ability to overcome adversity. While African-Americans coined the term ‘Black is Beautiful’, (rejecting epithets such as Negro, . . .) disabled people’s lexicon includes the word ‘crip’, which we apply to various contexts and meaning-making situations such as ‘crip time’. We have re-appropriated the derogatory ‘crippled’ epithet, turning it into a symbol of pride and differentiation. Outsiders use ‘crip’ at great risk, and are usually viewed with skepticism and distrust when attempting to use the term. When disabled people meet, we clasp hands in a special symbol of brother and sisterhood or raise our eyes in a ‘give me five’ gesture if our hands are immobile. We have rejected language of deviance for the language of power, self-love and pride. We have described ourselves as ‘the unexpected minority’, rejecting ‘handicap’ as a social construction, and embracing ‘disabled’ as an essential reality that has become integral to our personal identity—not an appended description. In short, the language we use in our everyday lives as well as in our written texts has become an important element of our culture and cultural identity.

Historical lineage that can be traced textually Distinctive disability press and publications are numerous. In my own country, Disability Rag, Mouth and Mainstream are influential mouthpieces of disseminating and propagating a cultural milieu from which to view disability as a common identity. Disabled Americans have poets and writers like Vassar Miller, Cheryl Marie Wade and Anne Finger. International publications such as the journal Disability & Society, serve as a scholarly forum and cultural text for

Is there a disability culture? 133 developing philosophical and theoretical views of disability from disabled scholars’ perspectives. Several textual archives or historical compendiums chronicle our thinking and political accomplishments as a distinct culture and are being taught in a growing number of Disability Studies classes at the university level in several countries. Two notable examples of historical compendiums in the US include Perspectives on Disability (Nagler, 1993) and No Pity (Shapiro, 1993). A growing industry of videos and films portray disability culture vividly. In the USA, two widely used videos include When Billy Broke His Head, which chronicles the experience of disability from a socio/political perspective, and Vital Signs, which portrays the artistic and cultural forms of disability culture. Several notable memorials serve as example of our collective pride and identity, including The Denver 7—a plaque in downtown Denver, Colorado to commemorate those who were arrested by the police during civil disobedience protests against the inaccessible transportation system. Disabled Americans also successfully lobbied to include in our national memorial of President Franklin Roosevelt visible depictions of ‘FDR’ as a wheelchair user who had polio. Ed Roberts has been called the father of the disability rights movement in this country. When he died in 1995, the celebration of his life resulted in several forms of memorials. Evidence of a cohesive social community In the USA, Berkeley is to disabled people as Martha’s Vineyard is to the Deaf. I ‘grew up’ as a disabled person on the streets of Berkeley, where disabled people congregate and interact socially, politically and academically. In Britain, Mairian Corker, in her writing has eloquently demonstrated that the Deaf are not a single cohesive community as Lois Bragg would like us to believe. Differences abound. However, within the disability community at large, multiple cohesive communities can be found. The Society for Disability Studies is one such cohesive community—international scholars with disabilities coming together with different viewpoints, but with a cohesive agenda to further Disability Studies. Disabled Sports Clubs are another example of cohesive communities. ADAPT is a radical political group in the USA that coalesces around special issues, such as incarceration of disabled people in nursing homes, and uses confrontational strategies for furthering the rights of disabled people. Freedom House in Bulawayo, Zimbabwe is an example of a cohesive community that provides a space for disabled people to come together socially as well as politically. In Soweto, South Africa, disabled people have formed an influential community that caters to the economic needs, political rights and social gathering of all disability groups. In every country there are clubs, sports groups, Centers for Independent Living, and Scholarly Societies dedicated to creating social communities of, by and for disabled people. Wherever numbers of disabled people come together as a group, there is a palpable sense of community—in difference, in struggle, in celebration of our accomplishments, in recognition of our humanity.

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Political solidarity I will have more to say about Culture as Politics in the next section. Suffice it to say that political solidarity has achieved the Salamanca Statement (Disabled Persons International); the United Nations statement of disabled rights; and numerous national laws—e.g. the Disabled Person’s Act of Zimbabwe, and the Americans with Disabilities Act in the USA. Acculturation within the ‘family’ Bragg is apparently referring to traditional notions of genetic kinship. Yet, a significant percentage of deaf persons are born into hearing families. Furthermore, extended families are a hallmark of multiple societies around the world. In my own experience, I searched for and found an extended family in Berkeley—a place where friends could nurture my new sense of self after my spinal cord injury, help me to develop self-confidence, and to find my place in the world as a successful person and competent professional. Generational/genetic links Deafness is not the only disability with genetic links. Several disabilities are genetic, including muscular dystrophy, sickle-cell anemia, and some forms of blindness. Furthermore, generational links may assist the disabled person in developing/finding membership in a culture, but they are not necessarily a prerequisite, and do not guarantee enculturation or inclusion. Pride and identity in segregation Disabled people struggle in solidarity for integration into society in terms of economics, equal rights and equal opportunity. This struggle is not synonymous with claiming a mainstream cultural identity—as Lois Bragg would have us believe. In other words, fighting for economic equality is not the same as asking for membership in a culture that demeans and dehumanises disabled people. Having set forth a historical/linguistic description of disability culture, I turn to Culture as Social/Political. As Ayesha Vernon argues, ‘Social relations of domination shape our lives according to the number of privileges or penalties scored depending on the number of norms an individual conforms to or deviates from respectively’ (Vernon, 1999, p. 389). Essentially, historical/linguistic notions of disability culture alone are not sufficient conditions for the existence of a disability culture. Specifically, historical/linguistic notions only derive meaning and significance when analysed from within the context of power relations and the politics of difference—notions inherent in post-modernist views of culture. In this view, disabled people struggle against hegemonic ideologies and begin to decentre notions of disability through a process of socialpolitical/cultural enactment.

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Culture as social/political Simi Linton, in her book Claiming Disability Knowledge and Identity reminds us that: We are everywhere these days, wheeling and loping down the street, tapping our canes, sucking on our breathing tubes, following our guide dogs, puffing and sipping on the mouth sticks that propel our motorized chairs. We may drool, hear voices, speak in staccato syllables, wear catheters to collect our urine, or live with a compromised immune system. We are all bound together, not by this list of our collective symptoms but by the social and political circumstances that have forged us as a group. (Linton, 1998, p. 4.) From this world view, disabled people come together to form a community based on cultural notions of solidarity, but not necessarily with one unified voice. Solidarity in the cultural sense means a common goal, but multiple expressions, pathways, needs. A common culture is based on struggle and resistance whose goal is to deconstruct, and recentre disabled people from objectified Other to Subject. Identity is forged within specific relations of privilege, oppression and struggle that is characterised by asymmetrical power relationships (all of which are inherent in post-modernist views of culture). Specifically, in ‘The dialectics of multiple identities and the disabled persons movement’, Ayesha Vernon takes Mike Oliver to task for focusing ‘on single issue politics’. Essentially, she argues for a culture of political solidarity in oppression that still recognises multiple issues of class background, the degree and severity of impairment, ethnicity, sex, sexuality and age—each of which ‘can exacerbate or modify the experience of disability’ (Vernon, 1999, p. 394). She asserts that the Disabled People’s Movement should not proclaim commonality in the experience of disablement, but that the reality of being a multiple Other does not necessarily prevent shared alliances. Can we have it both ways? In the social/political way of thinking about culture, structural reproduction predominates, and leads to the necessity for a concerted effort to fight collectively for social justice and equality. The notion of collective identities is key to this way of thinking. Identity is a key element of subjective reality and stands in a ‘dialectical relationship with society’ (Taylor, 1999, p. 376). From the structuralist line of anthropology, Taylor sees identity as formed by social processes which are determined by social structures that can be modified by individuals who react to these structures. In addition to the notion of identity formation, identities also shift according to place, time and context. However, as Fran Branfield (a disability rights activist) notes, ‘. . . this should not detract from the fact that a political movement has to define who it is fighting for, what its values are, and how it wants to bring about change’ (Duckett, 1999, p. 401). I would argue that these values have been defined and are the key to

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claiming a cultural identity from the social/political world view. These values are manifest in what German ‘Kultur’ calls the ‘geist’ of a people; underlying soul or spirit. For example, the American mainstream cultural geist has been described as having the archetypal value of money, and valuing adventurism as the ideal way of life. Expressions of culture in the American mainstream are quantitative—income and possessions (Irvine, 1994, p. 33). Within disability culture, post-modernist values of radical democracy and self-empowerment are core ‘geists’ and expressions of culture are qualitative—identity, voice, justice and equality. In this world view, the political is not at odds with the social construction of disability, but solidarity in political resistance to societal oppression is used as a basis for self and social empowerment. As Shakespeare notes: ‘In making “personal troubles” into “public issues” disabled people affirm the validity and importance of their own identity’ (in Campbell & Oliver, 1996, p. 177). Culture in this world view is a lived community in solidarity of struggle for justice and equality. Community, though, is not one-dimensional, but is, as Vernon notes, multi-layered. The act of community respects differences through creating new subject positions with the underlying and unifying value of a radical democracy as a way of life. Campbell & Oliver reinforce this point in Disability Politics (1996). They illustrate that while the rise of the disability movement in Britian had factions and disagreements over tactics, the UPIAS (Union of the Physically Impaired Against Segregation) provided ‘the intellectual heart and the political heart of the movement’ [in Britain] (Campbell & Oliver, 1996, p. 68). Counter-hegemonic political responses to discrimination and stigmatisation on the part of the larger society has resulted in a disability culture of dissent and struggle that includes temporal (body) as well as material (economic) dimensions. This culture of dissent is based on a framework described by Oliver: ‘. . . a framework which takes account of disabled people’s life histories, their material circumstances and the meaning that disability has for them as they have struggled through collective action to empower themselves . . .’ (Campbell & Oliver, 1996, p. 35). From this social/political world view of culture, social relationships and social structures bind us together in an inescapable web of differences. Through coming together and sharing our lived experiences, we have uncovered a pattern of institutional oppression, challenged it and begun to transform it. Disability culture is constructed/enacted in everyday interactions and rests on the values of a radical democracy that is committed to social justice. Add to the Disabled Persons’ Movement, the emerging field of Disability Studies—problematising false dichotomies, reconstructing and producing new meanings of disability from a political, not a technical perspective and valuing everyday experiences as a source of agency and empowerment (both individually and collectively). In essence, both the Disabled Peoples’ Movement and Disability Studies are creating a culture of disability that rests on post-modernist conditions of possibility.

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Culture as personal/aesthetic Notions of voice and textual narratives are key elements of a disability culture as personal/aesthetic. Specifically, through personal interpretations of life experiences, an individual creates a cultural identity as disabled. In this world view, ideas and experiences are filtered through the mind/body selfconsciousness. The body becomes a metaphor for culture, where culture is created from whole body experiences, and the disabled body is the interpretive force for cultural identity. This view addresses decoding or recentering as an essential development of cultural identity, without which cultural enactment is a hollow exercise. Compared to Geertz’ notion of culture as symbolic action, webs of significance are spun through the human agency of disabled people. Specifically, the aesthetic notion of disability culture answers the questions ‘What is the importance assigned to disability? By whom?’ In her dissertation thesis, Susan Gabel points out that the cultural experience of disability is not always or predominantly experienced through active membership in a minority group. She asserts that the development of one’s ‘embodied self’ through the process of experiencing life is significantly influenced by personal interpretations which are unique for each individual disabled person. The disabled body interacts within a social environment but ‘identity itself starts with the body: what the body does, how the body looks, what the body says, how the body feels, and how others experience that body’ (Gabel, 1998, p. 12). In developing a theory of an aesthetic of disability, Gabel goes on to say: When I say ‘I am disabled,’ I say something about the culture within which I experience life, its values, its norms. I also consider my disabled-ness in light of my other body experiences (gender, ethnicity, race, sexual orientation) and how those are constructed and valued or de-valued in my culture. Finally, if my statement appears to disagree with the prevailing notions of my culture, then my claim is one of resistance to those notions, and, in the end, my claim collaborates with my culture to construct my disabled body. In the end, my statement says much about me and how I view my body and my self but it also says much about the others with whom I experience my world. (Gabel, 1998, pp. 74–75.) From the world view of Culture as Personal/Aesthetic, I interpret Gabel’s statement about claiming disability as consisting of multi-dimensional experiences that use contextual factors to construct meanings of cultural identity. However, this interpretation/construction emanates from within a mind/body consciousness that has the capacity to resist and transform values about disability, as well as the capacity to reject notions imposed externally. In other words, that statement, ‘I am disabled’ may be influenced by mainstream cultural values, but is

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eminently a conscious personal choice. Claiming disability means identifying with a disability community and is an aesthetic pursuit. It is an act of decoding in which aesthetic pursuit creates a cultural identity within which an infinite number of experiences and multiple perspectives of disabled people take centre stage. However, much of what has been written about the disabled body and the larger societal constructive meanings surrounding disability leads many of us, as disabled people, to the conclusion that our physical bodies are something to, at worst be ashamed of, and at best to be ‘managed’ as ‘flaccid, leaking and sensory-deprived’ (Seymour, 1998, p. 19). For some, these images have been so internalised by an oppressive society and in particular by the medical profession (which objectifies our bodies through the gaze of deficits and deviance), and by anthropologists and sociologists in the academy [such as Goffman’s Stigma: Notes on the Management of Spoiled Identity (1963)] to the extent that our selfperceptions become our own psychological monsters. By contrast, a growing number of disability scholars like Gabel are recognizing the positive aesthetics of disability and the disabled body. As early as 1988, Harlan Hahn was asking the question, Can disability be beautiful? In his essay on the topic, he traces the history of what he calls a ‘subversive sensualism’ of disability beginning in the Middle Ages. For example, in feudal courts, physical disability was related to revelry, debauchery and laughter. In today’s world, the mass media has influenced a widely accepted norm of physical beauty as womanly svelte curves, manly muscular prowess and sleek, athletic, agile bodies. However, Hahn points out that in many cultures people disable themselves to be beautiful; e.g. through mutilation (the elongated lips of the Ubange women in Africa), or through body piercing and tattoos (American/European youth). Hahn argues that we, as disabled people, need to reclaim/reconstitute an aesthetic tradition by deconstructing images of the body as a gestalt or whole body image. Instead, we need to emphasize separate and discrete parts of the body. In place of a gestalt, we need to ‘cultivate a heightened aesthetic appreciation of anatomical variations’ (Hahn, 1988b, p. 223). The disabled body can also have an intrinsic appeal that is embodied in its innate differences. This view requires that one reject conformist visions of beauty and assert that ‘disability is beautiful’. Furthermore, a focus on separate and discrete parts of the body as intrinsically appealing in their differences creates ‘a shifting kaleidoscopic series of intriguing images’ (Hahn, 1988b, p. 222). I think this process of deconstructing negative images and reconstructing disability as beautiful is what Robert DeFelice is referring to in his video-taped comedy routine when he says he prefers the historical word, ‘crippled’. He says: ‘Crippled was good. Cripples have class. It sounds like Victorian back bedrooms. I like that. It’s got mystery’ (Mitchell & Snyder, 1996). In summary, a disability culture as personal/aesthetic constitutes the performative self, which is strategic and positional. Cultural identities are constituted through a process of personal identification that has aesthetic appeal. The body (physical and ideational) serves a symbolic function as the signifier of culture

Is there a disability culture? 139 and constitutes subjective realities. These realities are not constructed universally, but through concrete and specific encounters, struggles and engagements that are affective and ethically-based on values of self-pride. In this respect, disability culture as personal/aesthetic is reminiscent of post-structural symbolic anthropologists who assert that descriptions of culture must be cast in terms of constructions and interpretations to which people subject their experiences. Culture as personal/aesthetic is what disabled people acknowledge when they speak of ‘coming out’—an expression borrowed from lesbian/gay traditions. When I say I am 25 years old, I am not referring to my chronological age, but the age at which I became physically disabled and could proudly assert ‘I am disabled’. For those who subscribe to the view of culture as personal/aesthetic, the ability to assert an aesthetic pride in the disabled body is a necessary prerequisite to political identity and is the source of empowerment.

A macro-sociological framework for analysis I have presented three very different essentialist world views of disability culture—each bound by a particular discourse with specific values. If all three make valid claims, then the answer to the question, Is there a disability culture? must be that there are many cultures of disability. Further, according to the personal/aesthetic view, there may be as many different disability cultures as there are individuals who claim disability. However, as Clifford Geertz points out: ‘Eclecticism is self defeating not because there is only one direction in which it is useful to move, but because there are so many it is necessary to choose’ (Geertz, 1973, p. 5). Before choosing a view in which disability culture is or ought to be perceived, it is necessary to present a framework for analysing each of the three views of disability culture I have described. Carolyn Wang proposes a framework for the production of culture that may be a useful starting point. Using a macro-sociological framework adapted from Hall, Mukerji and Schudson, Wang articulates three theoretical strategies (Wang, 1992): 1 2 3

analysing the ‘content’ of the objects/signs themselves; understanding culture as a process of ‘encoding’, or production; interpreting or ‘decoding’ culture as a text.

The first strategy, content analysis, is a choice for Culture as Historical/ Linguistic. E. B. Tylor’s definition of culture as a complex whole acquired by individuals as members of society is consistent with this strategy and is exemplified by Lois Bragg’s enumeration of artifacts and acquired generational status. However, if one accepts this view as a complete picture of disability culture, one rejects/ignores the question of how disability culture is produced in the first place and how/whether culture changes over time. While Culture as Historic/Linguistic focuses on objective products or signs that make up a cultural ‘whole’, Culture as Social/Political is ‘encoded.’ Most

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disabled people who are active in disability rights movements (either globally or locally) have made this choice. Culture as Social/Political falls squarely within the post-modernist definition of culture as conditions of possibility mediated by relations of class, gender, and race. Disability scholars who espouse this view would add age, severity and type of disability, and sexual orientation. Furthermore, these conditions are embedded in relationships of power, the politics of difference, community and democracy. The dictum ‘the personal is political’ is a guardian knot that ties the individual to the politics of collective struggle. Embracing this world view of culture as encoded leads one to act—to reject/deconstruct dominant racist traditions. In acting, it is necessary, as Fran Branfield notes, to define who one is fighting for, what our values are, and how one wants to bring about change. In Oliver’s terms, action requires collectivity with intellectual and political heart. The choice of culture as encoded calls for an accounting of the material conditions of cultures as the context within which symbols of disability are transmitted and received, as well as produced. However, as Gabel notes, the cultural experience of disability is not always or even predominantly experienced through active membership in a politicised minority group. In fact, members of disability ‘movements’, and especially their leaders and spokespersons are predominantly males with physical disabilities. Furthermore, in the United States and Europe, these physically disabled males tend to be white, educated, middleclass heterosexuals. These disabled people are not, by and large, faced with multiple forms of discrimination or economic hardship. So, in a large sense, they have the ‘luxury’ of focusing their efforts on fighting for a larger cause rather than focusing on individual survival. The world view of Culture as Personal/Aesthetic, on the other hand, brings culture down to the individual level. A choice for Culture as Personal/Aesthetic is a choice for culture as a subjective ‘decoding’ of culture as text. This decoding strategy fits squarely within the post-structuralist view of culture that ties symbolic forms (in this case, disability) to concrete social events (in this case lived experiences of disabled people). When Clifford Geertz asks, ‘What is the importance assigned to a symbol and by whom?’ he is asking the same questions that Gabel answers in her theory of an aesthetic of disability. Choosing a definition of Culture as Personal/Aesthetic means embracing the importance of interpretation and asserting culture as the production and circulation of meaning through the embodied self (Corker, 1998b, p. 4). Culture as Personal/Aesthetic leads one to engage in discourse and has as its end goal self-validation and empowerment. Human agency (the disabled person) spins ‘webs of significance’ and, as Geertz asserts, culture becomes neither a patterned conduct nor a frame of mind, nor even the two mixed together. Culture is a contextual decoding of everyday experience cast in terms of constructs and interpretations to which disabled people subject their experiences. However, a choice of Culture as Personal/Aesthetic gives a back-seat to the potential power of community and collective identity in the struggle for social justice.

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Conclusion: a syncretised disability culture While Geertz cautions against eclecticism, I believe a syncretisation of the three world views is more than a collection of viewpoints—the complex whole of a syncretic disability culture becomes larger than the sum of its parts. A syncretic world-view of disability culture decenters disability identity from dominant/supremacist ideologies, while it reconstructs disability as Subject instead of objectified Other, and at the same time refigures the notion of self as an aesthetic and enacted identity. The roots of disability cultural identity are the elements of culture contained in the historical/linguistic world-view where we have collectively produced our own cultural meanings, subjectivities and images; e.g. a common language/lexicon that connotes pride and self-love, cohesive social communities. These roots refigure disability as Subject and are enacted through notions of self as aesthetic and performative that are inherent in the Aesthetic/Personal world-view of disability culture. The boundaries between personal disability identity and notions of disability community are blurred in a syncretic view. The Social/Political world view contributes a decentering and reconstruction of disability in relation to society. In community, identities forged in aesthetic-personal pursuits are supported by identification with the common struggle for radical democracy and conditions of possibility inherent in the Social/Political disability culture. Notions of self as Subject, as beautiful, as aesthetic, are the basis for resistance within the social/political culture. A syncretised disability culture allows space for the postmodernist view of difference as a political category (not innate biological difference), to coexist with the aesthetic value of self-empowerment. Multiple and simultaneous disability identities (such as class, race, sexual orientation, gender) co-exist with shared alliances in the political culture of disability. From the syncretic view, disability culture exists whether or not I say I am disabled or identify with a disability community. Whether one chooses to participate in Disability Culture is an individual decision and allows for an individual hybrid consciousness which can maintain tactical solidarity, while not being swallowed up by proclaiming commonality in the social/political experience of disablement. In so doing, political, cultural and disability borders become permeable boundaries whereby disabled people manipulate symbolic and material constructions of the world as active Subjects, not as objectified or marginalised Others. From a syncretic world view, solidarity and community are political/social metaphors for disability culture, along with the disabled body as the metaphor for cultural identity in the aesthetic/personal sense. These metaphors are enacted through the medium of the historical-linguistic view, which provides the products or signs that make up the observable constituent elements of disability culture. In the final analysis, an ethical framework for decision-making regarding the question of disability culture may be overlain on the macro-sociological framework of cultural production. First, one can ask, ‘How inclusive is the world view of disability culture that I have chosen?’—both in terms of diverse sources and

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numbers of disabled people who have access to it. Second, one can ask the question, ‘What is this world view’s explanatory and transformative power?’—both individually and collectively? One may also ask, How well does the syncretic view respond to the conditions and contexts of disabled people worldwide and in today’s globalised economies? I began by asserting that all world views are essentialist, that no one world view is more valid than another, and that particular limits and values are built in to all discourses on world views—including the syncretisation of disability culture and the ethical questions I chose to ask. However, in the final analysis, being born coloured and crippled, and becoming black and disabled is eminently a cultural process, no matter what world view one chooses. I return to the words of Carol Gill: ‘I believe very firmly in disabled culture, and if we don’t have one we should’. I would add, we should—whether or not the ‘we’ is collective or individual; whether or not the chosen disability culture is singular or plural; and whether or not the choice is based on an aesthetic, political, linguistic or syncretic view of disability culture.

References and bibliography Bauman, G. (1996) Contesting Culture: discourses of identity in multi-ethnic London (Cambridge, Cambridge University Press). Branfield, F. (1999) The disability movement: a movement of disabled people—a response to Paul S. Duckett, Disability & Society, 14, pp. 299–403. Campbell, J. & Oliver, M. (1996) Disability Politics: Understanding our past, changing our future (London and New York, Routledge). Coleridge, P. (1993) Disability, Liberation and Development (London, Oxfam). Corker, M. (1998a) Deaf and Disabled, or Deafness Disabled? (Buckingham & Philadelphia, Open University Press). Corker, M. (1998b) Difference and diaspora—an emerging sociolinguistics of disabled identities, paper presented at Sociolinguistics Conference, London. Davis, L.J. (1997) The Disability Studies Reader (New York & London, Routledge). Ferguson, M., Ferguson, D. & Taylor, S. (1992) Interpreting Disability: a qualitative reader (New York, Teachers College Press). Fine, M. & Asch, A. (1988a) Women with Disabilities: essays in psychology, culture and politics (Philadelphia, PA, Temple University Press). Fine, M. & Asch, A. (1988b) Disability beyond stigma: social interaction, discrimination and activism, Journal of Social Issues, 44, pp. 3–21. Gabel, S.L. (1998) A Theory of an Aesthetic of Disability (Ann Arbor, MI, UMI Dissertation Services). Gainer, K. (1992, September/October) I was born colored and crippled. Now I am black and disabled, MOUTH, The National Magazine of People with Brains, p. 31. Geertz, C. (1973) The Interpretation of Cultures (New York, Basic Books). Giroux, H. (1991) Postmodernism as border pedagogy: redefining the boundaries of race and ethnicity, in: H. Giroux (Ed.) Postmodernism, Feminism and Cultural Politics (Albany, NY, State Univeristy of New York Press). Giroux, H. & McLaren, P. (1994) Between Borders: pedagogy and the politics of cultural studies (London & New York, Routledge).

Is there a disability culture? 143 Giroux, H. & McLaren, P. (1989) Critical Pedagogy, the State, and Cultural Struggle (Albany, NY, State University of New York Press). Gliedman, J. & Roth, W. (1980) The Unexpected Minority: handicapped children in America (New York, Harcourt Brace Jovanovich). Goffman, E. (1963) Stigma: notes on the management of spoiled identity (Englewood Cliffs, NJ, Prentice Hall). Gutmann, A. (1994) Multiculturalism: examining the politics of recognition (Princeton, NJ, Princeton University Press). Hahn, H. (1988a) The politics of physical differences: disability and discrimination, Journal of Social Issues, 44, pp. 39–47. Hahn, H. (1988b) Can disability be beautiful? Social Policy, Winter, pp. 26–32. Hall, S. & DuGay, P. (1996) Questions of Cultural Identity (London, Sage). Ingstad, B. & Whyte, S. (1995) Disability and Culture (Berkeley, CA, University of California Press). Irvine, J.T. (1994) Edward Sapir: the psychology of culture (Berlin, Walter de Gruyter & Co). Jenkins, R. (Ed.) (1998) Questions of Competence: culture, classification and intellectual disability (Cambridge, Cambridge University Press). Kahn, J.S. (1995) Culture, Multiculture, Postculture (London, Sage). Kroeber, A. & Kluckhohn, C. (1952) Culture: a critical review of concepts and definitions (Cambridge, MA, Harvard University Press). Kuper, A. (1999) Culture: the anthropologists’ account (Cambridge, MA, Harvard University Press). Linton, S. (1998) Claiming Disability Knowledge and Identity (New York and London, New York University Press). Mitchell, D. & Snyder, S. (1996) Vital Signs: Crip Culture talks back. A 48 minute open captioned video produced by Brace Yourself Productions, Marquette, Michigan. Mead, G. (1934) Mind, Self and Society: from the standpoint of a social behaviorist (Chicago, IL, University of Chicago Press). McLaren, P. (1997) Revolutionary Multiculturalism: pedagogies of dissent for the new Millennium (Boulder, MA, Westview Press). McLaren, P. & Giroux, H. (1997) Writing from the margins: geographies of identity, pedagogy and power, in: P. McLaren (Ed.) Revolutionary Multiculturalism: pedagogies of dissent for the new Millennium (Boulder, Co, Westview Press). Nagler, M. (Ed.) (1993) Perspectives on Disability (Palo Alto, CA, Health Markets Research). O’Toole, C.J. & Bregante, J.L. (1993) Disabled lesbians: multicultural realities, in: M. Nagler (Ed.) Perspectives on Disability (Palo Alto, CA, Health Markets Research). Peters, S. (1996) The politics of disability identity, in: L. Barton (Ed.) Disability and Society: emerging issues and insights (London, Longman). Peters, S. (1999) Transforming disability identity through critical literacy and the cultural politics of language, in: M. Corker & S. French (Eds) Disability Discourse (Buckingham, Open University Press). Reindal, S. (1999) Independence, dependence, interdependence: some reflections on the subject and personal autonomy, Disability & Society, 14, pp. 353–367. Rosaldo, R. (1993) Culture and Truth: the remaking of social analysis (Boston, MA, Beacon Press). Sahlins, M. (1976) Culture and Practical Reason (Chicago, IL, University of Chicago Press).

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Sarason, S. & Doris, J. (1979) Educational Handicap, Public Policy, and Social History (New York, Free Press). Seymour, W. (1998) Remaking the Body: rehabilitation and change (London & New York, Routledge). Shapiro, J. (1994) No Pity: people with disabilities forging a new Civil Rights Movement (New York, Times Books/Random House, Inc.) Taylor, G. (1999) Empowerment, identity and participatory research: using social action research to challenge isolation for deaf and hard of hearing people from minority ethnic communities, Disability & Society, 14, pp. 369–384. Thomas, C. (1999) Female Forms: experiencing and understanding disability (Buckingham, Open University Press). Thompson, J.B. (1990) Ideology and Modern Culture: critical social theory in the era of mass communication (Stanford, CA, Stanford University Press). Vernon, A. (1999) The dialectics of multiple identities and the disabled people’s movement, Disability & Society, 14, pp. 385–398. Wang, C. (1992) Culture, meaning and disability: injury prevention campaigns and the production of stigma, Social Science and Medicine, 35, pp. 1093–1102. Younkin, L. (1989, May/June) Crips on Parade, Disability Rag, pp. 30–33. Zola, I.K. (1993) Self, identity and the naming question: reflections on the language of disability, Social Science and Medicine, 36, pp. 167–173.

Part II

Policy

Introduction Sally French and John Swain

Policies from multinational agencies, central governments, local governments and institutions have shaped the lives of disabled people throughout the world. Disabled people have consistently been marginalized and regarded as inferior and burdensome to mainstream society. This, together with their lack of power and political influence, has led, fundamentally, to harmful and degrading policy and practice. Under various Government Acts disabled people have been sterilized, incarcerated, segregated in ‘special’ schools and subjected to degrading medical treatment and rehabilitation in the name of ‘independence’ and ‘normality’. In order to put such policy into practice, disabled people have been excessively scrutinized, assessed and appraised by non-disabled ‘experts’. Charities have focused on needs rather than rights and have regarded disabled people as objects of their ‘care’ and patronage. Policy, however, is rationalized in terms of the ostensible benefits for disabled people, predominantly defining needs and providing the bases for practice and provision in meeting their predefined needs. Analyses of disability policy address the social context of impairment in conjunction with the social oppression of people with impairments. The scope of analyses of disability policy are, of necessity, far-reaching. In relation to impairment, social inequalities which, of themselves, relate to economic policy, have led to impairment through poor nutrition, sub-standard housing, dangerous work practices and mental stress. War is also a major cause of acquired impairment. Furthermore, in relation to disability, the social, structural and physical environment has been constructed in such a way that disabled people are excluded from employment, education, housing, leisure, personal relationships and the political process itself. An overarching factor is poverty: poverty is predominant in the cause of both impairment and the disablement of people with impairments. Questions of disability policy, then, reach into questions of global politics, power structures, ideologies and humanity. It took the rise of a strong disabled people’s movement from the 1970s to bring about major change. This is not to say that disabled people before that time were passive, groups such as the National League of the Blind (1899) had a radical agenda but they lacked sufficient power to bring about substantial change. Over the past 30 years, the disabled people’s movement has grown

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nationally and internationally, and links among disabled people throughout the world have been formed by international organizations, the Internet, conferences and this journal itself. The growth of the disabled people’s movement has underpinned both the critical analysis of policy and the proactive formulation of alternatives, primarily generated by disabled people themselves at local, national and international levels. This critical analysis is essentially generated through the establishment of the social model of disability, where disability is regarded as a product of a physical, social and political environment geared to non-disabled people, and stands in opposition to individual (medical, charity, tragedy) models, emphasizing individuals’ functional impairments, and vocational and social limitations. As evident in the chapters in this section, policy analysts have critiqued both the underlying individual model through which policy is founded and the implications for developing practice and provision. The social model provides a tool for analysis: a tool that is being developed and refined through use. The complexities of critical analysis are also evident in these chapters, for instance in establishing but also de-constructing rights-based models of policy. Policy relevant to disability is fraught with inconsistencies, contradictions and ‘new deals’, inherent within policies under umbrellas such as ‘integration’, ‘community care’, ‘independent living’ and, in recent years, ‘inclusion’. The challenges are further exacerbated through the recognition of the complexity of social division, including age, impairment, gender, ethnicity and sexuality. Alternatives are being formulated by disabled people that tackle the economic, social and political structures that disable people with impairments. The agenda articulated by disabled people themselves stresses, among other things, an end to discrimination, active participatory citizenship, adequate levels of income, control of the services they receive, equal opportunities in employment and independent living – the removal of disabling barriers and the creation of enabling environments. Turning to new policies, underpinned by legislation, examples such as the Americans with Disabilities Act (1990), the Disability Discrimination Act (1995), the Community Care (Direct Payment) Act (1996) and the Human Rights Act (1998) testify to the growing power of the disabled people’s movement. Yet such legislation is often weak and only goes some way in breaking down the barriers of a disabling society. It is a mistake for disabled people and their allies to assume that legislation such as this will bring about substantial change and that the struggle for inclusive citizenship is over. Such legislation frequently has individualistic underpinnings where issues of power and economic practice are ignored. Furthermore the development of other legislation, such as that relating to health and safety, frequently impact on disabled people in negative and discriminatory ways. Turning to international policy, the concept of globalization raises further complex and controversial issues in the analysis of disability policy. These are generated, in the first instance, by the economic structures of inequality, and reverberate, for instance, through unequal access to technology, the promulga-

Introduction 149 tion of the free market, the overt and covert spread of privatization and the dominant colonization of cultures, institutions and economic structures through westernization. Nevertheless, globalization is a controversial and contested concept, with positive as well as negative analyses. It can be argued that the penetration of westernization is mediated and adapted within non-western cultures, and non-western cultures have also penetrated the minority world, as evident in the variety of restaurants, medical practices, media outputs and so on. Furthermore, globalization has also seen the growth of an international disabled people’s movement promoting the strength of the collective voice of disabled people against oppression. The articles in this section of the book span the past 18 years and give a snap shot of social policy that has impinged on the lives of disabled people in many parts of the world. Much diversity will be evident when reading these articles, but the commonalties of oppression and discrimination which have forged the international movement of disabled people is also clear to see. The earliest paper, by Borsay (1986), begins to set the agenda for disability policy analysis, shifting the emphasis from individualistic and medical to the broader sociopolitical and economic orientations. The paper by Miles (1990) takes policy issues into the majority world, into the unsettlement and conflicts of Afghanistan, seeking management within indigenous traditional skills and community resources. Illustrating the complexity of an international perspective, the paper by Jayasooria, Krishnan and Godfrey (1997) explores developing disability in Malaysia, one of the fastest developing countries, in terms of becoming an industrialized nation in the world, while Hayashi and Okuhira (2001) delve into the history of the modern disabled people’s movement in Japan as the driving force for change in social norms and policy. The issues of the power of disabled people in policy-making turns to user involvement and representation in the paper by Beresford and Campbell (1994). Finally the paper by Russell (2002) brings the critique of disability policy full circle, returning yet again to the predominance of individualistic frameworks and the collective struggle of disabled people to breakdown the structural barriers they face.

References Americans with Disabilities Act (1990) USA. Community Care (Direct Payment) Act (1996) Chapter 30. London, UK: HMSO. Disability Discrimination Act (1995) Chapter 50. London, UK: HMSO. Human Rights Act (1998) Chapter 42. London, UK: HMSO.

Disability studies articles Borsay, A. (1986) ‘Personal trouble or public issue? Towards a model of policy for people with physical and mental disabilities’, Disability, Handicap and Society 1, 2, 179–196. Miles, M. (1990) ‘Disability and Afghan reconstructions: some policy issues’, Disability, Handicap and Society 5, 3, 257–267.

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Beresford, P. and Campbell, J. (1994) ‘Disabled people, service users, user involvement and representation’, Disability, Handicap and Society 9, 3, 315–325. Jayasooria, D., Krishnan, B. and Godfrey, O. (1997) ‘Disabled people in a newly industrialising economy: opportunities and challenges in Malaysia’, Disability and Society 12, 3, 455–463. Hayashi, R. and Okuhira, M. (2001) ‘The disability rights movement in Japan: past, present and future’, Disability and Society 16, 6, 855–869. Russell, M. (2002) ‘What disability civil rights cannot do: employment and political economy’, Disability and Society 17, 2, 117–135.

9

Personal trouble or public issue? Towards a model of policy for people with physical and mental disabilities Anne Borsay Lecturer in Social Studies, Saint David’s University College, Wales

Abstract For many years, community solutions have been the favoured response to physical and mental disability, but theoretical frameworks to guide these policies have not developed alongside the rhetoric. This paper attempts to fill the gap with one possible sociological model. We begin by distinguishing the dominant individualistic or ‘personal trouble’ perspective from the more controversial social or ‘public issue’ approach which, whether it takes an interpretative or a structural form, acknowledges the role of society in causing disabilities and shaping economic and social strategies. A model of policy is then drawn up for each viewpoint, bearing in mind the implications for public expenditure, state intervention, family and community support, and service organisation. Finally, it is argued that since help in the individualistic mould cannot cope with disability, an alternative response is required, which tackles economic, social and political institutions or structures while at the same time recognising the resistance to change in an industrial society.

Introduction During the past 30 years, services for people with physical and mental disabilities or impairments have been increasingly thrust in a community direction, as policy-makers have come to recognise the financial and the human costs of institutional care. But being essentially a reaction to incarceration, community strategies have grown up in an ad hoc fashion, without a coherent framework to guide policy development. As Richard Titmuss observed way back in 1961, community care occurred outside the hospital; it ‘conjured up a sense of warmth and . . . kindness’; it appeared to be economical, and that was enough for good intentions to be “transmuted, by the touch of a phrase, into hard-won reality” (Titmuss, 1976). Such a policy vacuum cannot be satisfactorily filled until the position which disabled people occupy in modern Britain has been tackled. Therefore, in this paper, we first undertake a sociological exploration of physical and mental impairment and then, on the basis of that analysis, propose two models which help to untangle the confusion which for so long has bedevilled community social services.

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The individualistic perspective Broadly speaking, two sociological conceptions of disability compete for attention. One is individualistic and the other is social, along the lines of C. Wright Mills’ classic distinction between ‘personal troubles’ and ‘public issues.’ Writing in the 1950s, Mills maintained that: Troubles occur within the character of the individual and within the range of his immediate relations with others; they have to do with his self and with those limited areas of social life of which he is directly and personally aware. Accordingly, the statement and resolution of troubles properly lie within the individual as a biographical entity and within the scope of his immediate milieu—the social setting that is directly open to his personal experience and to some extent his wilful activity. Issues have to do with matters that transcend these local environments of the individual and the range of his inner life. They have to do with the organisation of many such milieux into the institutions of a historical society as a whole, with the ways in which various milieux overlap and interpenetrate to form the larger structure of social and historical life. (Mills, 1970) What happens if this theoretical taxonomy is applied to physical and mental impairment? When disability is interpreted as a ‘personal trouble’, sharp distinctions are drawn between different types of impairment and their causes are sought exclusively within the individual: thus, mental and physical handicaps are construed as mere biological deficiencies; mental illness is explained with reference to personal genetics, biochemistry or psychology; and ageing is viewed as an unavoidable physiological process. Not only is causation conceived of in an individualistic way, and without reference to the shared economic, social and political dependencies which give these groups many common needs. Additionally, the assumption is made that deviation from ‘normal’ behaviour is necessarily a tragic loss or misfortune, particularly where the ‘sufferer’ is young. Parallels are commonly drawn with death and, like the bereaved, the recently impaired are said to pass through a stage of mourning and to undergo a series of traumatic emotions: shock, denial, anger and depression, before attaining some degree of equilibrium and perhaps finding substitute social roles. With the elderly, there is a heavy sense of inevitability; physical and mental decay is envisaged as a natural part of ageing and the old may be advised to achieve successful adjustment by withdrawing or disengaging from society, to become preoccupied with personal concerns (Cumming et al., 1972; Fitzgerald, 1974; Forsythe, 1979; Oliver, 1981; M. Oliver, 1983; Oliver, 1986). But regardless of age, the individual is expected to cope with disability by adapting himself to society; society is not expected to adapt to him. Despite its widespread appeal, the individualistic approach has a number of flaws. Even within its own narrow boundaries, personal characteristics crucial to

Personal trouble or public issue? 153 the psychology of disabled people are overlooked; for impairment is assumed automatically to trigger off a single reaction which restricts functioning in all spheres and lowers morale—irrespective of personality, age, sex, type of disability, work and the financial situation, social relationships and previous life-style (Eisdorfor & Cohen, 1980; Greenblum, 1984; Harris & Cole, 1980; Harrison, 1983; Thomas, 1982; Ward, 1979). Most telling, however, is the omission of societal factors because without the socio-economic and political context provided by the ‘public issue’ or social perspective, we are ill-equipped to comprehend both the causes of disability and the social policies which it has provoked.

The social aetiology of disability Whereas the individualistic interpretation ascribes disability to intrinsic mental or physical shortcomings, its social alternative recognises a role in causation for extrinsic factors of a ‘structural’ and an ‘interpretative’ kind. These social factors may directly cause or help to cause impairment, but they are also responsible for processes which aggravate the effects of functional limitation and so further encumber disabled people (Walker, 1980a). Let us deal with the direct causes first of all, beginning with the structural ones. There is an unhappy tendency in the social sciences to ally the structural perspective with the methodological stance of positivism, thereby implying that individual action is determined by the social system and that the ‘social world’ is ‘accessible to understanding and explanation by . . . use of the research strategies of the natural sciences’ (Cuff & Payne, 1979). However, the term ‘structural’ does not have to be adopted in a strict, deterministic manner; it can also simply stress the possible impact of economic, social and political institutions without suggesting any necessary curtailment of freedom of action, or indeed the personal autonomy which many disabled people believe that they are able to achieve in spite of their dependencies (Shearer, 1981, 1982; Sutherland, 1981). With the individualistic perspective, any such sensitivity to the structure of society is missing and, consequently, impairment is regarded as a regrettable chance event which randomly afflicts certain individuals. But, in fact, societal factors of various sorts precipitate mental and physical incapacity, and economic organisation is especially culpable. Not only do industrial practices cause pollution and workplace injuries and diseases. Private enterprise may also eschew the firm regulation of defective or harmful goods, drugs and services, and capitalism requires a competitive structure of relationships which may damage mental health (Cochrane, 1983; M.I.N.D., 1979) and give rise to social inequalities which cause the disabilities of poverty associated with low socioeconomic class. At the same time, the state itself may increase impairment by intervening in the public interest when there is a risk to some individuals, as vaccine damage illustrates. Obviously, personal biology and psychology on occasions mingle with these factors, but any admission of social causation makes an explanation of disability incomplete unless it takes cognizance of the environmental dimension (Walker, 1980a).

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Whatever this balance between direct individual and social causes, social processes also contribute to the aetiology of impairment. For interpretative social scientists, these are the only relevant considerations; the idea of any input from the individual is dismissed out of hand and disability is seen solely as an artificial creation of society, which would vanish almost over-night if social organisation and social attitudes were transformed. Although comprising a diverse collection of opinions, authors of this ilk are united in their rejection of positivism and anxious to emphasise the meanings which individuals attach to social situations in which they engage (Ingleby, 1981). Thus, the critical issue is how physical and mental impairment is perceived by parties to a social encounter. Perhaps the best example of this interpretative tradition is antipsychiatry, an area of some controversy in mental health which has generated lively debate. Anti-psychiatry points to the centrality of the social audience in defining a person as mentally ill (Pearson, 1975). To quote the famous American psychiatrist, Thomas Szasz: In medical practice, when we speak of physical disturbances, we mean either signs (for example, a fever) or symptoms (for example, pain). We speak of mental symptoms, on the other hand, when we refer to a patient’s communications about himself, others, and the world about him. He might state that he is Napoleon or that he is being persecuted by the Communists. These would be considered mental symptoms only if the observer believed that the patient was not Napoleon or that he was not being persecuted by the Communists. This makes it apparent that the statement that ‘X is a mental symptom’ involves rendering a judgement. The judgement entails, moreover, a covert comparison or matching of the patient’s ideas, concepts, or beliefs with those of the observer and the society in which they live. The notion of mental symptom is therefore inextricably tied to the social (including ethical) context in which it is made in much the same way as the notion of bodily symptom is tied to an anatomical and genetic context. (Szasz, 1960) Since decisions about mental illness are so moral and subjective, Szasz argues that the positivist methods of medicine—a perfectly appropriate response to physical disease—are totally wrong in mental health; anti-psychiatry then goes on to accuse most psychiatrists of labelling certain emotions and behaviour as pathological, not due to some inherent and objective quality, but because they offend arbitrary social rules and norms (Becker, 1963; Manning & Oliver, 1985). Anti-psychiatry, in the main a criticism of medical hegemony in mental health, has usually been content to berate the application of positivist techniques to ‘psychological problems’, while tacitly accepting their pertinence to physical conditions (Sedgwick, 1982). However, sociologists and doctors have become ever more aware that responses to physical symptoms, pathways to treatment and the adoption of a sick role are affected by characteristics like age,

Personal trouble or public issue? 155 sex and social class (see, for example, Goldberg & Huxley, 1980; Miles, 1978; Tuckett, 1976; Tuckett & Kaufert, 1978). Thus, the uncompromising use of medical concepts in all spheres of health care is losing credibility and some authorities now deny any distinction between physical and mental conditions. Sedgwick, for instance, claims that: the medical enterprize is from its inception value-loaded because we have chosen to consider as ‘illnesses’ or ‘diseases’ those natural circumstances which precipitate . . . death (or failure to function according to certain values). (Sedgwick, 1982) Sedgwick’s thesis is called in question by the fact that physical and mental conditions carry different social meanings. Nevertheless, the justified attack on conventional medicine has encouraged an interpretative perspective on physical impairment as well, and Victor Finkelstein has taken the short step from physical illness to suggest that physical handicap too is nothing more than an artificial social construct. Finkelstein draws a sharp division between impairment and disability. Quoting from a paper by the Union of the Physically Impaired Against Segregation, he defines Impairment as lacking part or all of a limb, or having a defective limb, organ or mechanism of the body; and disability as the disadvantage of restriction of activity caused by contemporary social organisation which takes no or little account of people who have physical impairments. Disability is, therefore, a ‘special’ form of discrimination, or social ‘oppression’ (Finkelstein, 1980); it is imposed by a society which expects all its members to conform to the yardstick of able-bodied normality, and builds physical and social environments which penalise any ‘misfits’.

Societal structure and disability Although important, interpretative thinking is incomplete as a social construction of handicap unless, like recent work by M. Oliver (1983, 1984) and D. Stone (1985), it attempts to address the economic, social and political structures which underpin our value systems and so help to stigmatise disabled people. Some of the best structural accounts of impairment emerge from the literature on ageing which has accumulated on both sides of the Atlantic. In Britain, Townsend blames the tradition of functionalism in sociology, as well as the more descriptive and empirical traditions of social work and social administration (for encouraging) the kind of theory of ageing which attributes the causation of problems to the difficulties of individual adjustment to ageing, retirement

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Townsend declares forcefully that, contrary to the individualistic position, it is society which “creates the framework of institutions and rules within which the general problems of the elderly . . . are manufactured” (Townsend, 1981). His comments apply equally to younger people with physical and mental impairments. Therefore, a sociology of disability must give proper consideration to economic, social and political status.

Economic status The economy is a pivotal feature of modern Britain and economic rationality is a central goal. Consequently, society is organised to achieve maximum “efficiency, productivity and material progress” (Shearer, 1981) and the personal qualities commensurate with these objectives are hallowed—good health, independence, resourcefulness, enthusiasm, energy, ambition, resilience (Harris & Cole, 1980; Topliss, 1982). In the competitive environment of the labour market which expresses these values, disabled people are disadvantaged for at least three reasons. First, the growth of credentialism may undermine the prospects of those who, due to age or an interrupted and inadequate education, have failed to amass qualifications which mirror their abilities. Secondly, while mechanisation and technical change may open up new opportunities for younger disabled people, innovation devalues the experience of older employees and their expiring working life makes them unpopular candidates for retraining. Finally, despite evidence to the contrary, employers often consider all disabled people an unreliable, high risk group unable to reach normal productivity levels and hence unsuitable both for initial recruitment and promotion. The net effect of these trends is that many of working age with physical and mental impairments are located at the bottom of the income ladder, or out of work and dependent upon social security benefits like the majority of the disabled who are elderly (Buckle, 1971; Davoud & Kettle, 1980; Estes et al., 1982; Hendricks & McAllister, 1983; Jordan, 1979; Kettle, 1979; Locker, 1983; Maclean & Jeffreys, 1974; Oliver, 1982; M. Oliver, 1983; Taylor & Ford, 1983; Townsend, 1979, 1981; Walker, 1980a, 1981, 1982a,c; Wansbrough & Cooper, 1980; Ward, 1979).

Social status Work not only has financial repercussions; there are also spin-offs for social and political status. Ageing is associated with contracting social relationships; and as old people start to play fewer roles and fill more time with home-centred activities, their links with the community are severed (M. Abrams, 1980; Cumming et al., 1972; Tunstall, 1966; Wenger, 1984). The younger disabled may also experience impoverished social interaction, and for similar reasons. Loss of mobility and negative community attitudes may make socialising

Personal trouble or public issue? 157 difficult; poverty, stemming from retirement, unemployment or poor wages, may cramp leisure pursuits; and without a job to regulate life-activity and serve as a foundation for intercourse, it may be hard to put together social networks (Goffman, 1968; Harris & Cole, 1980; Locker, 1983; Locker et al., 1979; Miles, 1981; Weir, 1981a,b). Townsend argues that the high esteem of the aged within the family helps to compensate for their low ‘public status’ (Townsend, 1981). Geographical mobility, however, has splintered multigenerational families and many relatives are now too distant to be convivial with elderly or younger disabled kin on a regular basis (Rosser & Harris, 1965; Wenger, 1984). Moreover, in a highly fluid society, where knowledge is quickly outdated, the elderly who do remain near relations lose their worth as counsellors and advisors (Rosow, 1974); and at all ages, dependencies which breach the conventions of family life—for example, husband financially beholden to wife, or frail parent reliant upon adult offspring—may sully relationships and leave the disabled person with tasks insufficient to offset the humiliation from loss of function (Bergmann et al., 1984; Dartington et al., 1981; Dowd & La Rossa, 1982; J. Oliver, 1983; M. Oliver, 1983). But, above all, non-economic family roles in a capitalist society rarely carry the prestige of paid employment. Therefore, although these activities, many in the field of child care, may satisfy elderly women whose lives have always revolved around domestic affairs, they may be second best for the individual of either sex who has been economically active outside the home.

Political status Just as economic factors influence social relationships, so they also affect the political status of disabled people. Marx pushed this logic to its outer limits, claiming that the capitalist mode of production so determined “the rest of the social structure” that “political and administrative intervention” was unable to “decisively shape the reality of the economic order” (Mishra, 1977). However, it is possible to accept some elbow-room for political institutions, while still conceding that economic and political status are intimately intertwined. In our industrial society, any adult not performing work-linked economic and social roles is a thorn in the flesh of economic rationality and may even be feared as a menace to political stability. There is no one way of handling this trouble spot, but with physical and mental impairment the sick role is deployed to minimise the effects of dependency. When subjected to this status, ‘ill’ disabled people are, according to their degree of incapacity, excused various duties and absolved of responsibility for their situation, in return for agreeing that their condition is undesirable and co-operating with ‘appropriate’ help (De Jong, 1981; Miles, 1981). Any reduction of this process to crude social control is simplistic; there is no conspiracy to divest deviance of its political significance and hence defuse a “threat or potential threat to the existing . . . conditions of society” (Treacher & Baruch, 1981; Manning & Oliver, 1985). Nevertheless, application of the sick role to disabled people does devalue their input to political debate by conveying the mistaken impression that, being indisposed, they are either

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unable to speak for themselves or have nothing worthwhile to say (Shearer, 1981). Thus, political status is corroded by an apparently humanitarian action. Consumer engagement in the welfare state is further undercut by the British system of representative democracy which endorses participation by the elector singly and indirectly, rather than more pugnacious forms of political activity. In the absence of direct and effective user participation, disabled people have to champion their interests through pressure groups and the electoral system. Since the mid-1960s, organisations from within the disabled power movement (the Union of the Physically Impaired Against Segregation, the Liberation Network of People with Disabilities, the British Council of Organisations of Disabled People, Disabled People’s International) have been fighting to raise the political consciousness of their constituencies (Dartington et al., 1981; Oliver, 1984; Sutherland, 1981). They have met with some success but, unfortunately, there are inherent obstacles to much further progress both in this area of pressure group politics and electorally. A major problem is dogged adherence to economic rationality, which reproaches those who are not fully productive and discourages them from organising around a negatively perceived condition. However, the incoherence of the impaired as a political group also reduces their impact. Splintering along class lines is one cause; handicapped members of the upper and middle classes, with wealth and investment incomes, higher salaries or better superannuation schemes, have a very different experience of impairment to people who must rely exclusively on state social services. But other tensions within the disabled population are important too. The traditional medical approach to handicap, for example, has created artificial fissures between disease categories which obscure common social needs; and as the majority of disabled people are elderly, the distinction between handicap and old age is likewise divisive. In turn, this age profile has implications for the nature of political participation because, although the elderly are growing in numerical terms, they mostly confine themselves to voting at elections and are less likely than younger age bands to take part in more aggressive activities—signing petitions, demonstrating, and founding pressure groups. Satisfaction with the status quo born of past deprivation may be one reason for this passivity; and the ‘new’ elderly, and younger disabled people may be more ready to complain. But whatever the intensity of their grievances, the impaired of all ages encounter practical difficulties when attempting to voice political opinions. Poverty and poor health may sap their energy; immobility and inaccessible public buildings may constrain them; and they may have little confidence in their powers of verbal or written communication. The upshot is that citizens with physical and mental disabilities are relatively powerless to shape the formulation and administration of policies which play a fundamental part in their lives (Borsay, 1986) [1].

The social policy response In dismantling the individualistic perspective and assembling an alternative social one, we have so far dealt with the social causes of disability, considering

Personal trouble or public issue? 159 the direct connections between socio-economic organisation and the incidence of impairment, interpretative views of the social construction of disability, and the ramifications of societal structure for economic, social and political status. Within the context of this paper, however, it is not adequate to posit that disability is socially manufactured, by whatever means. To examine more fully the pock-marks in community care, we must now tease out the implications of our sociological analysis for policy development. Since the conception or explanation which is given to a problem “contains an implicit prescription for policy” (Townsend, 1979), it is possible to outline an individualistic and a social model of community social services for disabled people. At present, the individualistic perspective has a stranglehold, and provisions exhibit many of the characteristics summarised for this model in the table below. Thus, all community care is rudimentary and under-financed. The state leaves families to cope with disability almost unaided. Services—for example, education and purpose-built accommodation—may segregate their recipients from the rest of the community and defy co-ordination. Mechanisms for direct consumer participation are variable in their success. The distribution of benefits neither significantly reduces material inequalities in income and housing, nor achieves equity in health care, education and the other social services. There are few attempts to prevent the economic and social causes of disability. And, last but not least, half-hearted employment initiatives, such as the discredited three per cent quota of disabled workers for companies with more than 20 employees, fail to tackle the labour market discrimination which lies at the heart of ambivalence towards impairment in an advanced industrial society. In sharp contrast, the social models are more conscious of ‘the larger structure of social and historical life’. In the past, the interpretative version has not been very relevant to policy discussions. Either writers have by-passed reform within the existing social system and preferred to imagine the disappearance of disability in some future ‘brave new world’ (Leonard, 1975; Ramon, 1982); or, alternatively, they have lapsed into naivity when confronting ‘the larger complexes of society’, as opposed to ‘small-scale structures and relationships’. Thomas Szasz, for instance, shows great faith in the private contract between psychiatrist and client, without appreciating that many most in need of help Table 9.1 Policy responses under the individualistic and social models

Public expenditure State intervention Family and community support Service organisation

Individualistic model

Social (structural) model

Lower Reluctant Minimum Segregated Disjointed More unequal/inequitable Producer-dominated

Higher Enthusiastic Maximum Integrated Co-ordinated Less unequal/inequitable Consumer-sensitive

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‘are hardly in a position to compete in the therapy-purchasing market’ (Sedgwick, 1982). More recently, groups of disabled people have started to arrange services for themselves, sometimes employing assistants and sometimes on a self-help basis. However, many of those involved are from younger age groups whose impairments (e.g. spinal injury) are typically static. Others may not have the energy or resources to forge innovatory patterns of care. Nor may they then be able to offer help, particularly in the early stages of disability; and so mutual aid organisations move towards “voluntary assistance from longer term members to newer ones” (Richardson & Goodman, 1983). Therefore, while accepting the personal significance of such initiatives, they are unlikely to satisfy the needs of the majority of disabled people with the degenerative conditions of later life. It follows that there is more mileage for policy analysis in the structural than in the interpretative version of the social model. Since the structural approach recognises the societal causes of many disabilities, an ideal package of economic and social policies, ambitious and wideranging, is prescribed. The state would intervene energetically in the organisation of employment to reduce physical and mental damage to workers. Goods of all descriptions would be tested stringently and banned when they were a threat to health and safety. Vigorous attempts would be made to maximise job opportunities for elderly and younger disabled people who wished to work. Generous income maintenance programmes would prevent poverty due to impairment. And to meet housing, health, education and welfare needs, the state would evolve a comprehensive, integrated and co-ordinated collection of services which were equitably allocated in all localities, geared to family and community resources, and politically accountable to their users. Yet if the social model recommends these strategies to combat the faults of individualistic policies, it also reveals that the prospects for successful implementation are slim because the same societal forces which manufacture disability also mitigate against a structural response. Cost is the initial stumbling block. Throughout the twentieth century, public expenditure has consumed an increasing proportion of the gross national product (GNP) and the expansion of social services spending on social security, welfare, health, education and housing has been especially marked. Thus, between 1910 and 1975, during which time total state expenditure grew from 12.7% to 57.9% of GNP (at factor cost), social services expenditure increased sevenfold, from 4.2% to 28.8% (again, at factor cost). When the national product was itself on an upward trend, the level of public spending was less of an issue; profits and real wages grew over time and provided “the material base for reformism and the welfare state”. As the GNP started to falter, however, government expenditure came under heavy fire and the present intensive assault, dating from the mid-1970s, is conducted in the conviction that our economic difficulties will be ameliorated by better housekeeping. Economists now clash over the details of a strategy for recovery, but neo-Keynesians and monetarists alike agree that public spending, if uncontrolled, is “a major cause of the . . . economic crisis and must be cut” (Gough, 1979). Therefore, given the depth of the recession, the global cost of a structural policy response

Personal trouble or public issue? 161 to disability is inhibiting (Oliver, 1984), particularly to the present government which has an ideological commitment to replace statutory services with the family and the private and voluntary sectors. But even if the economy was buoyant enough to fuel an extended welfare state, all-embracing policies towards disability would still be frustrated because of the primacy which is given to economic over social goals. In contemporary Britain, the work ethic is considered essential to economic survival; it is believed that talent and effort must be materially rewarded and an income differential between the economically active and economically inactive preserved, in order that citizens have an incentive to find and keep employment. Consequently, national insurance contributions and taxation are pegged at relatively low levels, and hence a strict threshold imposed on all public expenditure but especially that directed towards social ends (George & Wilding, 1984). Ironically, however, the emergence of human needs is often closely interwoven with the economic development of industrial societies, and recourse to statutory services by disabled people is no exception. Since the Second World War, the economy has demanded a more geographically mobile workforce and increasing numbers of married women have been attracted back to paid employment. As a result, relatives and friends may no longer live in close enough proximity to help disabled people; neighbourhood networks, generated in some localities by decades of shared residence, may be less supportive (P. Abrams, 1980); and women, the traditional and still the most numerous carers, no longer have so much time to spare (Briggs, 1983; Charlesworth et al., 1984; Equal Opportunities Commission, 1980; Green et al., 1979; Jones & Vetter, 1985). These changes are not inevitably destructive; mobility and female employment may enhance living standards and open up opportunities for individuals previously fettered by tight-knit family and community life. Nevertheless, new needs do appear which demand greater statutory support for disabled people and this structural policy is a costly one, with little economic return. Unlike expenditure on education or curative medicine, community care cannot be put forward as a means to improved productive capacity (Sleeman, 1979); nor, in a period of high unemployment, is the release of valuable labour a defence, particularly when many carers are women with few occupational skills who seek part-time work as secondary earners. Therefore, community care for disabled people cannot be pursued through the economic justifications which hold most sway in a capitalist society. Social services to substitute for relatives and neighbours also contravene the principle of laissez-faire, which with its emphasis on self-help reiterates the competitive individualism of the market place. In the context of families and local communities, state ‘interference’ is said to imperil the sanctity of the home and the neighbourhood, and to undermine the natural sense of mutual obligation found in each. But the commitment to laissez-faire overflows into political institutions too, making central administrations first loathe to weaken the (theoretical) autonomy of local government by instructing the authorities responsible for many community services to innovate or extend their activities;

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and, second, loathe to intervene in industry—to insist on strict workplace safety standards; to humanise employment conditions; to regulate the production of dangerous goods; to attack discrimination against disabled workers. In other words, a spirit of free enterprise persists and although governments have moved to eliminate the worst vagaries of local democracy and the worst abuses of industrial organisation, attitudes to further statutory intervention are often ambiguous, in all the main political parties. Conscious of the liberty of the citizen, as a producer, consumer and local elector, the state may be hesitant to hedge in his freedom of action, even if the cost of acquiescence is inadequate community services, more disability and less job opportunities for impaired workers. As well as disclosing opposition to the extension of community policies for disabled people, the structural model also indicates that defects in the social services will be resistant to change. At the heart of this conservatism lie the professional groups who implement social policies and mediate between the welfare state and its clients. Pure humanitarianism is not the sole inspiration of these practitioners, despite the reveries of some functionalists; but nor are they the mere lackeys of economic and political elites. Rather, believing in the ideals of care embraced by their ethical codes, they use the power, which stems from an ability to stymie government policy through non-co-operation, to enter into a partnership with the state based on a shared, if fluctuating and unbalanced, commitment to the welfare ethic. Nevertheless, there are inherent contradictions; for as repayment for the privileges of professional status—autonomy, community sanction, the respect of politicians and civil servants—social services personnel are prepared to apply the sick role to disabled people and work in agencies which reinforce this status through segregation, the unequal/ inequitable distribution of resources and the denial of opportunities for genuine consumer participation in decision-making (Wilding, 1982). Segregated social services owe their origins to the individualistic policy model, which focuses on accommodating disabled people within the structures of ‘normal’ society instead of showing flexibility in the face of human diversity. Thus, there is a tendency to reduce those who cannot act out the usual gamut of economic and social roles to the trait which stops their proper participation in society; to assume that their differences rule out the possibility of an ordinary life in all spheres; and then to use this ‘deviance’ to justify separate or segregated provisions which treat special needs (Purkis & Hodson, 1982; Study Group of the 1978 Co-ordinated Research Fellowship Programme, 1980). Professional groups, well to the forefront in identifying these special needs, have from time to time managed to orchestrate policy initiatives; and in the short term, disabled people have gained by the introduction of segregated facilities to replace harsh institutional regimes or gross community neglect. As specialists, however, professionals tend ‘to diagnose a problem in relation to what they themselves can offer’ and so the welfare state has been carved principally by their pattern of occupational skills (Walker, 1982b). The resulting division of labour bears little resemblance to consumer needs; for example, the vested interests of teachers

Personal trouble or public issue? 163 has hampered transfer of disabled children from special education, which isolated them from their peers and depresses academic attainment, to standard classrooms giving a better chance of equal opportunities. In addition, competing professional ideologies and fierce rivalry stifle both the co-ordination of help to individuals and the reform of services to bring them more into line with disabled people’s requirements—not just in the segregated sector but throughout the welfare state (Bytheway & James, 1978; Pascoe & Thompson, 1979; Robinson, 1978). In the longer term, therefore, the separatism and insularity encouraged by professional influence has produced disjointed social services which may be out of step with consumer needs. Segregation is essentially an extreme form of inequality which isolates and excludes minorities (Webb, 1980), but inequality itself is not confined to special services; integrated policies potentially open to all citizens are also affected. The social security system, for instance, awards to those injured at war or in employment levels of benefit significantly higher than the invalidity schemes, retirement pension or supplementary benefit; and by so articulating the worth of service to society, propagates a hierarchy among state dependants within the disabled population (Shearer, 1981; Topliss, 1982; Oliver, 1984). But even at the top of the pecking order, payments do not always lift their recipients from poverty; and onto this foundation of financial inequality are piled housing and the other material deprivations which arise from low income. Bearing in mind the universal nature of monetary and accommodation needs, equality is a suitable criterion against which to measure policy. However, where needs are not common to us all, thinking in terms of equality serves ‘merely to underwrite existing inequalities’ (Jones et al., 1978) and, therefore, equitable access to assistance commensurate with personal and social circumstances becomes the appropriate test (Shearer, 1981). The equitable distribution of resources is just as elusive to health care, education and the personal social services as equality is to social security and housing. In both cases, the reason is the alliance of the welfare state to the values of a capitalist economy and in particular to the work ethic. However, where equity is at issue, professional discretion, exercised at the margins in housing and social security decisions, is elevated in importance. Although the professions are not blatant agents of social control, the perspectives which guide their operation do embody a therapeutic model of practice—a ‘problem-treatment-cure’ approach which with adults concentrates on a return to ‘normal’ economic and social roles and with children aims for a healthy and socially competent labour force for the future. This emphasis on rehabilitation is devastating for disabled people, where not dramatic change but modest improvement, or perhaps the prevention of further deterioration, is perceived as the most likely effect of intervention. To begin with, services designed for children and the working population may be peripheral to the needs of individuals with long-term dependencies. But even when help is relevant, the assumption that professional skills are superfluous may encourage the automatic allocation of disability referrals to less prestigious occupational groups, or a second class service from professionals whose training has instilled

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the superiority of therapeutic work and devalued association with patients or clients of limited economic potential. It is this allegiance between social services personnel and the state which underpins the inequitable treatment of disabled people (Borsay, 1986) [1]. Paradoxically, shortcomings in the social services obstruct the path to user accountability. In the first place, imperiously supplying assistance and attaching the label, ‘illness’, to citizens with physical and mental impairments foster a false image and sense of dependence (Purkis & Hodson, 1982) which, when combined with representative democracy’s espousal of indirect participation, helps to dismiss them as incapable. However, segregation, inequality and inequity also take their toll; for by discriminating negatively on the basis of disability, they not only reinforce the sick role but also deter campaigning by communicating that impairment is a stigma, to be hidden not brandished. If consumers are written off as incompetent and passivity is promoted, professional control of the welfare state is exonerated and any attempts at more direct participation—Community Health Councils, patients’ committees, tenants’ associations—are likely to be cosmetic. But this is not surprising. The imperfections of community care stem primarily from tensions which surround dependency in an advanced industrial society; and until these dissonances are resolved, disabled people will continue to suffer from denuded political status.

Conclusion It has been the aim of this paper to develop a model of community care disciplined by a sociological appraisal of physical and mental impairment. To this end, two conflicting interpretations of disability have been compared, one individualistic and the other social. Under the individualistic perspective, disability is presented as a ‘personal trouble’ and the victim is expected to come to terms with his plight, assisted by relatives and close acquaintances. Under the social perspective, conversely, disability is acknowledged as a ‘public issue’ and emphasis is placed on the role of society in its manufacture—by directly causing physical and mental impairment; by applying pejorative labelling processes; by operating economic, social and political institutions which are deaf to the needs of disabled people. Naturally, different policies are derived from these two interpretations. In line with its conception of disability, the individualistic policy response is unhappy to sanction extensive government spending and intervention; it acquiesces in the strain imposed upon families and neighbourhoods; and accepts social services which are segregated and disjointed, unequally or inequitably distributed, and dominated by professionals. From its grounding in the structure of society, the social model prescribes diametrically opposed policies: heavy public expenditure and state intervention; maximum support for carers; and integrated, co-ordinated social services, allocated according to principles of equality or equity and tuned in to consumer needs. But at the same time, this model also demonstrates clearly the problems of moving from individualistic policies, typical of much current provision, to a more socially orientated

Personal trouble or public issue? 165 programme of community care. Of course, welfare goals are not invariably incompatible with the economic rationality which is a hallmark of industrial Britain; for, historically, as Robert Pinker observes: The political interest in maintaining social order and consensus, the growing awareness that what was good for social welfare was also good for the economy, and the relevance of social policy to military efficiency and patriotic unity have . . . contributed greatly to the extension of the welfare state. (Pinker, 1974) In a period of acute recession, however, the cost of increasing any social service quickly becomes prohibitive; and where the beneficiaries hail from largely nonproductive minority groups, endemic impediments to change become even more intractable. Better community care threatens work incentives through bigger tax and national insurance bills, without the fillip of an economic return; high profile government—to help relatives, friends and neighbours, to expand and overhaul health and local authority services, to prevent disability— threaten the cherished independence of families and communities, local political institutions and employers; the pursuit of integration, equality/equity and consumer participation threaten the autonomy of the professions and their symbiotic relationship with the state. Given these barriers to change, the social model carries a doubly pessimistic message: yes, reform of community care is pressing but the resistance will be formidable.

Note 1 I am grateful to the editor of the Occasional Papers on Social Administration, in which series this book appears, for permission to use the above paragraph.

References Abrams, M. (1980) Beyond Three-Score and Ten (Mitcham, Age Concern Publications). Abrams, P. (1980) Social change, social networks and neighbourhood care, Social Work Service, pp. 12–23. Becker, H. (1963) Outsiders (New York, Free Press). Bergmann, K., Manchee, V. & Woods, R.T. (1984) Effect of Family Relationships on Psychogeriatric Patients, Journal of the Royal Society of Medicine, 77, pp. 840–844. Borsay, A. (1986) Disabled People in the Community (London, Bedford Square Press). Briggs, A. (1983) Who Cares? (Chatham, Association of Carers). Buckle, J. (1971) Work and Housing of Impaired Persons in Great Britain (London, HMSO). Bytheway, B. & James, L. (1978) Reaching across the wild borders, Health and Social Service Journal, pp. 936–938. Charlesworth, A., Wilkin, D. & Durie, A. (1984) Carers and Services (Manchester, Equal Opportunities Commission).

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Cochrane, R. (1983) The Social Creation of Mental Illness (Harlow, Longman). Cuff, E.C. & Payne, G.C.F. (Eds) (1979) Perspectives in Sociology (London, Allen & Unwin). Cumming, E., Dean, L.R., Newell, D.S. & McCaffrey, I. (1972) Disengagement: a tentative theory of ageing, in: S.H. Chown (Ed.) Human Ageing (London, Penguin). Dartington, T., Miller, E. & Gwynne, G. (1981) A Life Together (London, Tavistock). Davoud, N. & Kettle, M. (1980) Multiple Sclerosis and its Effects upon Employment (London, Multiple Sclerosis Society). De Jong, G. (1981) The movement for independent living: origins, ideology and implications for disability research, in: A. Brechin, P. Liddiard & J. Swain (Eds) Handicap in a Social World (Sevenoaks, Hodder & Stoughton). Dowd, J.J. & LaRossa, R. (1982) Primary group contact and elderly morale: an exchange/power analysis, Sociology and Social Research, 66, pp. 184–197. Eisdorfor, C. & Cohen, D. (1980) The issue of biological and psychological deficits, in: E.F. Borgatta & N.G. McCluskey (Eds) Ageing and Society (Beverly Hills, Sage). Equal Opportunities Commission (1980) The Experience of Caring for Elderly and Handicapped Dependants (Manchester, Equal Opportunities Commission). Estes, C.L., Swan, J.H. & Gerard, L.E. (1982) Dominant and competing paradigms in gerontology: towards a political economy of ageing, Ageing and Society, 2, pp. 151–164. Finkelstein, V. (1980) Attitudes and Disabled People (New York, World Rehabilitation Fund). Fitzgerald, R.G. (1974) Reactions to blindness: an exploratory study of adults with recent loss of sight, in: D.M. Boswell & J.M. Wingrove (Eds) The Handicapped Person in the Community (London, Tavistock). Forsythe, E. (1979) Living with Multiple Sclerosis (London, Faber). George, V. & Wilding, P. (1984) The Impact of Social Policy (London, Routledge & Kegan Paul). Goffman, E. (1968) Stigma (London, Penguin). Goldberg, D. & Huxley, P. (1980) Mental Illness in the Community (London, Tavistock). Gough, I. (1979) The Political Economy of the Welfare State (Basingstoke, Macmillan). Green, S., Creese, A. & Kaufert, J. (1979) Social support and government policy on services for the elderly, Social Policy and Administration, 13, pp. 210–218. Greenblum, J. (1984) Age and capacity devaluation: a replication, Social Science and Medicine, 19, pp. 1181–1187. Harris, D.K. & Cole, W.E. (1980) Sociology of Ageing (New York, Houghton Mifflin). Harrison, J. (1983) Women and ageing: experience and implications, Ageing and Society, 3, pp. 209–235. Hendricks, J. & McAllister, C.E. (1983) An alternative perspective on retirement: a dual economic approach, Ageing and Society, 3, pp. 279–299. Ingleby, D. (1981) Understanding ‘mental illness’, in: D. Ingleby (Ed.) Critical Psychiatry (London, Penguin). Jones, D.A. & Vetter, N.J. (1985) Formal and informal support received by carers of elderly dependants, British Medical Journal, 291, pp. 643–645. Jones, K., Brown, J. & Bradshaw, J. (1978) Issues in Social Policy (London, Routledge & Kegan Paul). Jordan, D. (1979) A New Employment Programme Wanted for Disabled People (London, Disability Alliance). Kettle, M. (1979) Disabled People and their Employment (Banstead, Association of Disabled Professionals).

Personal trouble or public issue? 167 Leonard, P. (1975) Towards a paradigm for radical practice, in: R. Bailey & M. Brake (Eds) Radical Social Work (London, Edward Arnold). Locker, D. (1983) Disability and Disadvantage (London, Tavistock). Locker, D., Rao, B. & Weddell, J.M. (1979) Public acceptance of community care for the mentally handicapped, Apex, 7. Maclean, M. & Jeffreys, M. (1974) Disability and deprivation, in: D. Wedderburn (Ed.) Poverty, Inequality and Class Structure (London, Cambridge University Press). Manning, N. & Oliver, M. (1985) Madness, epilepsy and medicine, in: N. Manning (Ed.) Social Problems and Welfare Ideology (Aldershot, Gower). Miles, A. (1978) The social content of health, in: P. Brearley, J. Gibbons, A. Miles, E. Topliss & G. Wood, The Social Context of Health Care (Oxford, Blackwell/Martin Robertson). Miles, A. (1981) The Mentally Ill in Contemporary Society (Oxford, Martin Robertson). M.I.N.D. (1979) Prevention in Mental Health (London, National Association for Mental Health). Mishra, R. (1977) Society and Social Policy (Basingstoke, Macmillan). Oliver, C. (1982) Older Workers and Unemployment (London, Unemployment Alliance). Oliver, J. (1983) The caring wife, in: J. Finch & D. Groves (Eds) A Labour of Love (London, Routledge & Kegan Paul). Oliver, M. (1981) Disability, adjustment and family life: some theoretical considerations, in: A. Brechin, P. Liddiard & J. Swain (Eds) Handicap in a Social World (Sevenoaks, Hodder & Stoughton). Oliver, M. (1983) Social Work with Disabled People (Basingstoke, Macmillan). Oliver, M. (1984) The politics of disability, Critical Social Policy, No. 11, pp. 21–32. Oliver, M. (1986) Social policy and disability: some theoretical issues, Disability, Handicap and Society, 1, pp. 5–17. Pascoe, N. & Thompson, Q. (1979) Co-operation and conflict: an examination of the interface between housing and social services departments, Housing Review, 28, pp. 71–74. Pearson, G. (1975) The Deviant Imagination (London, Macmillan). Pinker, R. (1974) Social policy and social justice, Journal of Social Policy, 3, pp. 1–19. Purkis, A. & Hodson, P. (1982) Housing and Community Care (London, Bedford Square Press). Ramon, S. (1982) The logic of pragmatism in mental health policy, Critical Social Policy, 2, pp. 38–54. Richardson, A. & Goodman, M. (1983) Self-help and Social Care (London, Policy Studies Institute). Robinson, T. (1978) In Worlds Apart (London, Bedford Square Press). Rosow, I. (1974) Socialisation to Old Age (Berkeley, University of California Press). Rosser, C. & Harris, C. (1965) The Family and Social Change (London, Routledge & Kegan Paul). Sedgwick, P. (1982) Psycho Politics (London, Pluto Press). Shearer, A. (1981) Disability: whose handicap? (Oxford, Blackwell). Shearer, A. (1982) Living Independently (London, Centre for Environment for the Handicapped/King Edward’s Hospital Fund for London). Sleeman, J.F. (1979) Resources for the Welfare State (Harlow, Longman). Stone, D. (1985) The Disabled State (Basingstoke, Macmillan). Study Group of the 1978 Co-ordinated Research Fellowships Programme (1980) New

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Forms in the Structures and Organisation of Social Services, Including Multidisciplinary Centres and Systems to Encourage Client Participation (Strasbourg, Council of Europe). Sutherland, A. (1981) Disabled We Stand (London, Souvenir Press). Szasz, T. (1960) The myth of mental illness, American Psychologist, 15, pp. 113–118. Taylor, R. & Ford, G. (1983) Inequalities in old age: an examination of age, sex and class differences in a sample of community elderly, Ageing and Society, 3, pp. 183–208. Thomas, D. (1982) The Experience of Handicap (London, Methuen). Titmuss, R.M. (1976) Commitment to Welfare (London, Allen & Unwin). Topliss, E. (1982) Social Responses to Handicap (Harlow, Longman). Townsend, P. (1979) Poverty in the United Kingdom (London, Penguin). Townsend, P. (1981) The structured dependency of the elderly: a creation of social policy in the twentieth century, Ageing and Society, 1, pp. 5–28. Treacher, A. & Baruch, G. (1981) Towards a critical history of the psychiatric profession, in: D. Ingleby (Ed.) Critical Psychiatry (London, Penguin). Tuckett, D. (Ed.) (1976) An Introduction to Medical Sociology (London, Tavistock). Tuckett, D. & Kaufert, J.M. (Eds) (1978) Basic Readings in Medical Sociology (London, Tavistock). Tunstall, J. (1966) Old and Alone (London, Routledge & Kegan Paul). Walker, A. (1980a) The social origins of impairment, disability and handicap, Medicine in Society, 6, pp. 18–26. Walker, A. (1980b), The social creation of poverty and dependency in old age, Journal of Social Policy, 9. Walker, A. (1981) Towards a political economy of old age, Ageing and Society, 1, pp. 73–94. Walker, A. (1982a) Unqualified and Underemployed (Basingstoke, Macmillan). Walker, A. (1982b) Social need, social services and mental illness, in: Housing Management, Social Work and Mental Illness (London, King’s Fund Centre). Walker, A. (1982c) Dependency and old age, Social Policy and Administration, 16, pp. 115–135. Wansbrough, N. & Cooper, P. (1980) Open Employment After Mental Illness (London, Tavistock). Ward, R.A. (1979) The Ageing Experience (New York, Lippincott). Webb, A. (1980) The personal social services, in: N. Bosanquet & P. Townsend (Eds) Labour and Inequality (London, Heinemann Educational). Weir, S. (1981a) Our image of the disabled and how ready we are to help, New Society, 1 January. Weir, S. (1981b) Has International Year helped disabled people? New Society, 24/31 December. Wenger, G.C. (1984) The Supportive Network (London, Allen & Unwin). Wilding, P. (1982) Professional Power and Social Welfare (London, Routledge & Kegan Paul). Wright Mills, C. (1970) The Sociological Imagination (London, Penguin).

10 Disability and Afghan reconstruction Some policy issues M. Miles Commissary, Mental Health Centre, Peshawar, Pakistan

Abstract Conflicts within Afghanistan have severely disrupted the few formal rehabilitation services for disabled Afghans. The unsettled situation, together with prevailing socio-economic underdevelopment, poses massive problems for reconstruction. Realistically, Afghans with disabilities will have to manage their lives largely with traditional skills and community resources for many years to come. Their indigenous resources may be supplemented with modern rehabilitation information (skills and knowledge) using an ‘information-based’ approach to planning. Some implications of this approach are examined, with examples of information systems in practice.

Conflict in Afghanistan continues (May 1990) as various political groups struggle for power. Meanwhile many thousands of disabled Afghan women, children and men pursue their lives among the estimated 10.5 million population still living within the country or among the 5.5 million refugees in Pakistan and Iran. This paper reviews some current resources and issues of policy and planning for the rehabilitation of disabled Afghans. The development profile of Afghanistan demands something beyond conventional wisdom. Slogans of the International Decade of Disabled People are unknown here, and if known they would have minor relevance. The United Nations has targeted disabled Afghans in its Operation Salam and has been trying since 1988 to devise plans, but is unclear how to proceed beyond rather general outlines (CADA, 1989). In the 1980s, the trend of advice by UN consultants to governments of preindustrial nations favoured so-called Community Based Rehabilitation [1] and repudiated the setting up of institutions. This followed the Western movement to deinstitutionalise medical care, to demedicalise perceptions of disability and to avoid the segregation of disabled people in rehabilitation colonies of doubtful ecological validity. The trend was reinforced by a statistical imperative: the number of disabled people with access to institutional rehabilitation, mostly urban and costly, is hugely exceeded by the number for whom no formal modern services of any sort exists. The extension of specialised institutions to provide services for the neglected

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majority is far beyond the resources that could conceivably be made available in countries like Afghanistan. Even Western nations having sufficient resources lack the political will-power to make specialised rehabilitation available to their less developed areas. Considerations of social justice would indicate that a more modest level of help should be extended to a much larger clientele; while social history suggests that wealthy urban clients may continue to absorb a disproportionate amount of the scarce rehabilitation skills and resources. The UN advice tended to contradict the instincts of Third World government officials, whose perception of the field was that the problem (people with disabilities) should be quantified and collected into one place (an institution) where it could be dealt with or cared for as appropriate. The notion that society should move towards greater acceptance and more equitable distribution of benefits and resources for all disadvantaged or marginalised individuals appeared remote in countries where society lacked any strong, homogenising features and where provision of nutrition, shelter, education and human rights was inadequate for a substantial proportion of the population [2]. By the end of the 1980s, inherent contradictions had surfaced in the idea of attempting to plan Community Based Rehabilitation centrally and hand it down to backward communities. One of the development lessons from the allied fields of rural education and primary health care is that some meaningful level of local community participation in decision-making is essential to successful development. Innovations parachuted in as a package seldom acquire lasting roots. Momm and König, vocational rehabilitation planners at the International Labour Office, conclude (1989) that: The somewhat surprising outcome of all CBR efforts undertaken so far by the ILO is perhaps a greater awareness of the difficulties accompanying the implementation of CBR. (p. 11) The existing models of community-based rehabilitation have proven to have serious shortcomings as they are professionally unsatisfactory, difficult to organise as a self-sustainable programme and not feasible without major back-up from outside the community. (p. 20) If the UN’s favoured strategy of the 1980s has shown serious shortcomings in developing countries that are far stronger economically and less troubled by war, it is unlikely to help Afghanistan in the 1990s. What can realistically be offered from the world’s accumulated experience, to a nation with an official Under-5s mortality of 300/1000 (The State of the World’s Children, 1990) and spot estimates of infant mortality from 20% to above 50% (The Children of Afghanistan, 1988, pp. 111, 131)? Many Afghan people scratch a precarious living, as their forebears have done for centuries, in highland grazing and stony terraced fields now sewn with unexploded mines. The improbability of the aid

Disability and Afghan reconstruction 171 exercise indicates that fresh approaches are needed, involving identification of traditional and invisible resources and their integration in the sort of information-based rehabilitation that has seen some success with neighbouring populations in Pakistan (Miles, 1989a; Peters & Rehman, 1989).

Formal rehabilitation resources Organised rehabilitation resources reported to UNESCO and ILO [3] by the present Government in Kabul comprise urban organisations for blind and for physically disabled persons and a few urban programs for vocational rehabilitation of needy persons including those with disabilities. There has been some inservice teacher training for special education and some formal training for physiotherapists and for prosthetic and orthotic technicians. Some of these resources have diminished or ceased due to the fighting. The Ministry of Public Health in Kabul has planned a Rehabilitation Centre for Disabled Children and Mothers, with a vocational emphasis. A Quetta-based organisation training Afghans in physiotherapy, prosthetics and orthotics tried to open new rehabilitation centres inside Afghanistan, but the situation has been too troubled for this to succeed (Handicap International, 1990). An unknown number of Afghan medical, educational and welfare personnel with some rehabilitation experience, living in Afghanistan or abroad, are not using their skills for lack of resources and a stable situation. Some of these skilled people who have settled abroad may be willing to return on fixed contracts to assist with rebuilding (Dupre, 1989). Coordination and informationgathering has begun among voluntary agencies currently assisting Afghan refugees with disabilities and/or giving training in rehabilitation skills.

Informal resources Traditional. There are traditional healers, bone-setters, pirs who guide the mentally disturbed, wise-women who counsel mothers, and other indigenous resources. Physical massage is well known. Rural craftsmen can make a special shoe, garment or chair to fit an unusual body, or a splint or crutch to support a broken limb. There are mullahs with experience of teaching blind persons to memorise the Holy Quran. There are teachers who have disabled pupils casually integrated in their classrooms. There are traditional notions of disability prevention through dietary precautions and safety measures. Invisible. The greatest resource bank is with disabled people themselves and with family members, neighbours and local community who may have cared for them, assisted them or just treated them as normal human beings. They have the practical experience of living with disability—their own or their neighbour’s. Some of them, highly motivated, have experience of adapting their life, environment, job, mode of communication, to overcome the disability and live as normally as possible. Some, usually women, have years of experience of

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caring for a disabled child or elderly relative. Shafique et al. (1988) comment on the comparative lack of stigma attached to psychiatric illness among the Afghans. Activities typical of these invisible rehabilitation resources are portrayed in a series of radio broadcasts in Pushto to Afghan villages in 1984, tapes of which are now used in training health workers in refugee camps (Miles, 1986). Traditional and invisible resources are often flawed by lack of information, by risky techniques, by questionable beliefs and attitudes. People trained in Western rehabilitation medicine may dismiss them as useless or harmful, but this reaction is itself arrogant and wasteful. Practical steps by which ordinary people overcome their problems in their own environment are always worthy of study. Informal resources have the advantage of being ecologically appropriate and culturally acceptable, because they derive from the people themselves. Even if a practice is medically doubtful or unacceptable, it is worth studying its shape and form, role and context, in case a scientifically proven alternative may be presented in similar guise and thus become more easily accepted. Involving disabled Afghans in plans for their own future has its difficulties. At a meeting to discuss the start of an association of disabled Afghans, some physically disabled men were dismissive of a blind man present. “He’s a blind! He can’t do anything!” The notion of mentally handicapped self-advocates could not be broached—there was no vocabulary by which such an idea could meaningfully be communicated. On the other hand, Afghan cultures involve a keen sense of rights and justice, derived from the local understanding of Islam. At the right time, people will respond to the information that Muslim Jurists anticipated by 1000 years much of the detailed modern Western debate on the civil rights of mentally handicapped people (The Hedaya, 1963).

Planning structures Traditional authority and structures, hugely disrupted both inside Afghanistan and in the refugee villages, have not generally been replaced by anything stable or widely acceptable (Edwards, 1990). Social and economic destruction is such that no speedy return to stability can be expected. Planning has a more than usually provisional feel. Yet to neglect positive planning for disabled Afghans would be to accept that their needs will receive minimal attention; especially those of women and children and all whose disability was unconnected with the fighting. Men disabled in jihad and people disabled by mines may expect some compensation and simple equipment (The Pakistan Times, 17 April 1990). Children lamed by polio or with mental growth damaged by dietary deficiencies are likely to be overlooked, with many others in categories that attract little attention. It is useful to consider three phases of planning: interim, medium and longterm. Interim structures are those that can be devised and implemented on the basis of disabled refugees’ situation within Pakistan and Iran, up to the period of transit to Afghanistan. Medium-term structures may be envisaged from when

Disability and Afghan reconstruction 173 the return is fully under way, through the early years of stabilising and rebuilding the country under a recognised national Government. Structures for the medium and long term are clearly the responsibility of the Afghan people and their Government, present and future, who will be free to adopt or reject any interim measures or any suggestions that may be offered as to medium and long term planning. Ideally, interim structures and measures may be devised that will commend themselves to the Government and people, so that they may readily integrate with existing resources within Afghanistan and be adopted and strengthened so as to become in effect the medium term plan. This depends upon the views, strength and ideology of whatever Government gains and retains power. Most of the basic methods, skills and techniques of rehabilitation for disabled persons are politically neutral. Service structure for rehabilitation, however, depends very much on political and ideological decisions about the allocation of financial and human resources, and also on whether the Government permits international agencies to support humanitarian work, i.e. rehabilitation for disabled persons, in rural and urban areas. An obvious strategy seems to be the politically neutral one of training personnel in basic methods, skills and techniques of rehabilitation, which can be applied immediately in interim structures, hoping that the skilled persons will later be absorbed as resources in whatever medium and long term structures may be set up by the Government of Afghanistan or in NGO structures with or without international support. Some agencies in Peshawar and Quetta are already working on this basis, training mobility instructors for blind persons and physiotherapy technicians, orthotists and prosthetists. However, political choice is unavoidable even in the transfer of skills. In every training structure some trade-off occurs between entry qualification, length of training, level of skills transferred, number of trainees processed over time, training costs, number and type of disabled persons likely to benefit from the skills transferred. Four major rehabilitation strategies, Traditional, Institutionalised, Client/Community Based and Resource Centre Based, make different adjustments to the equation relating to transfer, cost, accessibility, public accountability etc. of rehabilitation skills (Miles, 1989b). These adjustments in turn reflect upon the entry qualification of trainees, the length of training and the anticipated structure for referral and supervision. To take practical examples: 1

2

3

If the Health Ministry of Afghanistan will not employ anyone using therapeutic techniques without at least six months full time formal training, it is bound to influence the sort of interim measures to be taken now. If the future health services of Afghanistan are based on a decentralised model, with Government resources directed primarily into many local health centres, it would influence the sort of trainee to whom it might be most strategic to give rehabilitation training. If, as seems likely, a future Afghan Government were to prioritise the

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M. Miles vocational rehabilitation of war-disabled men (International Rehabilitation Review, 1989), while some other agencies have women’s and children’s needs as their goal, it would influence the type of training imparted and the expected site of operation and method of financing.

These questions cannot be decided now so training agencies are tending to take any likely-looking applicant, but a longer view should also be considered. The above examples indicate the need for consultation with a cross-section of the present political, religious and social leaders among the Afghan refugees and the in-country population, along with articulate representatives of disabled Afghans [4]. Integrating all such views into the planning process would not be easy, but should enhance the likelihood of interim efforts blending smoothly into the eventual medium-term structures in Afghanistan.

Practical estimate The above envisions an optimal outcome in which interim services are well planned and co-ordinated, and successfully transfer to Afghanistan with little loss of resources and skills. The ideal is unlikely to be realised, because of many difficulties and the present lack of formal rehabilitation resources on either side of the border. In countries with a comparable socio-economic profile (e.g. Nepal, Yemen), formal services are sparse and poorly co-ordinated between the various levels of skill available and between Government and private sectors [5]. In Afghanistan, the early years of reconstruction are likely to bring in each major city a hospital giving some medical rehabilitation and a few voluntary agencies running services, e.g. physiotherapy clinic for polio paralysis, mobility training for blind adults, co-operative workshop for people with various disabilities or trauma. Rural towns may see basic health and education services but no specialised rehabilitation work. In villages, where 80% of the people will live, even basic health and education services are likely to be absent. To begin planning in these unpromising circumstances, a systematic approach is needed to describe the baseline. Figure 10.1 illustrates some linkages of need and resource, with factors governing access, in a planned rehabilitation system, indicating also the opportunities for useful input and strengthening required in the present Afghan situation. It shows in abbreviation some clients for rehabilitation information and skills; some sources from which clients’ needs can be met; some factors governing access of clients to sources; and a suggested weighting or priority of input needed in planning for disabled Afghans. A disabled person, e.g. an Afghan with severely impaired and deteriorating hearing, may need access to information about how to make best use of residual hearing and about low-cost amplifying devices. She might benefit from a designated hearing-aid fund. She should meet other deaf women who are used to nonaudible communication. Her access to information, hearing-aids, funds and peers depends on where she lives, social permission for travel across town or

Disability and Afghan reconstruction 175

Figure 10.1 Rehabilitation information/skills need/access network.

from home to village centre, her level of motivation to get help, her awareness of where to look and the appropriateness of information sources to her level of education/literacy. Each network line in Figure 10.1 represents hundreds of potential situations and many thousands of individual client-source linkages. Each major line should be considered carefully in terms of priorities and further analysed as a tool for planning. Some resources may conveniently be assembled in a rehabilitation organisation or institution, while others may better be integrated into normal health, education and welfare services. In any given city or rural area it should be possible to make an inventory of existing resources and estimate levels of access enjoyed by various sorts of client. From such an inventory, it becomes clearer which major resources are missing, how existing resources might more usefully be deployed and what should be the higher priority inputs. It is important that all the clients for rehabilitation skills or information may themselves also serve sometimes as resources. For example, the general public

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acts as a resource wherever a disabled person appears in public and is treated normally and sensibly by those people who happen to meet him or her. Disabled people can be major rehabilitation resources when they counsel others or act as therapists, or help in the training of therapists. Public institutions or planners act as clients for rehabilitation information when, for example, a mosque, school or bank wishes to know how to provide wheelchair access, or a planner wants to know what sort of radio programs would interest blind adults. They can act as resources when, for example, a school provides integrated education; a bank provides a weekly reserved time when elderly, frail persons can do business in uncrowded and unhurried circumstances; a mosque provides a meeting room for a local association of disabled people; a planner allocates special resources for mothers bringing up disabled children. This analytical approach attempts to bridge gaps of concept and knowledge between rehabilitation consultants, who know too much about their own field, and the generalist planner and decision-maker who needs to be able to get an estimate of the baseline and an overview of the main issues and factors. It assists planners or politicians to use their knowledge of the current general living conditions of their communities, and to see how an input of rehabilitation information/skills could have a useful impact.

The information concept The concept of Information Based Rehabilitation developed during use of information strategies among a population similar to that of Afghanistan (Miles, 1990). Theoretical and applied information, i.e. knowledge and skills, is used in every rehabilitation strategy, embodied in trained workers, replicated through training schemes, accessible in concentrated form in places such as hospitals, special schools, physiotherapy clinics. In more dilute and less obvious forms, rehabilitation information exists in the community at large, as discussed above. What is new in the concept of Information Based Rehabilitation is the evaluation of strategies in terms of their information content, and the systematic planning of rehabilitation services, formal and informal, to maximise quality, quantity, dissemination and feedback of rehabilitation information systems and networks. This has several advantages: 1

2

3

Instead of pitting strategies against one another, e.g. Institution Base versus Community Base, the information approach sees the complementary nature of all the strategies. One of the few clear advances of this century is the development of means to move information powerfully, rapidly and cheaply around the globe. If the fighting in Afghanistan uses Western state-of-the-art weapons, it is also possible for rehabilitation to benefit from modern knowledge and skills— though the tools of life may be less easily imported than those of death. Information defies ordinary economics, in that it can be given away in any quantity without the giver having any less. In fact it multiplies in the

Disability and Afghan reconstruction 177 process, because the giver receives feedback and so improves the quality of her information. (A feedback loop is needed also to monitor deterioration during transmission.) In the health field, there is a dawning recognition that “Health care systems . . . are indeed in the information business; that information is an essential commodity; and that information is a key ingredient to being successful” (Protti, 1989). This is true of rehabilitation systems too, but is not yet widely recognised, least of all in situations such as those of refugees which tend to attract dedicated individuals performing heroic works in isolation.

An example in practice To be most effective, Information and Communication need an independent centre, focus, funding and administration, at least in the early stages. Experience suggests that if they are tacked on to an existing service institution or added as a pious general recommendation to other schemes, they will be neglected, ineffective, and restricted in the capacity to respond to a wide variety of needs. An independent centre or focal point should employ, and be directed by, people with experience both of information, media and rehabilitation. The following are some likely spheres of activity, commencing among the Afghan refugees and progressively transferring within Afghanistan. (a) Information on disability and rehabilitation A general information/advice service on matters of disability and rehabilitation, e.g. are physiotherapy services available in x town; where to get a hearing aid serviced; what to do at home with a child who has been diagnosed as severely retarded; what disability-related design considerations to think of in low-cost temporary housing; where to apply for funding for a blind women’s mobility course; how to modify a camp latrine for frail, arthritic or elderly persons; what is epilepsy, etc. (b) Skills transfer for rehabilitation services To Afghan refugees with disabilities (i) for their own personal needs; (ii) for mutual help, assistance, therapy between disabled people. To Afghan women caring for a disabled person at home. Add-on modules for existing courses for (i) health workers; (ii) teachers; (iii) vocational, job-creation and agricultural workers; (iv) others as needed. (c) Mobilisation of personnel Facilitating the establishment of (i) a register of human resources available or potentially available for rehabilitation; (ii) one or more mutual help/advocacy

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organisations for three groups: (a) disabled Afghans; (b) Afghan women caring for disabled persons; (c) Afghan rehabilitation workers. (d) Attitude reformation Provision of (i) radio and audio-visual material, posters, cartoon strip booklets, newspaper inserts, etc. for mass audience (ii) short orientation courses/workshops geared towards Party officials, political and religious leaders; health and education planners and professionals; information and media workers; other opinion leaders and key persons.

In conclusion Prospects for most disabled Afghans, inside or outside their own borders, are poor by Western standards. Yet the hardiness and ingenuity of the Afghan people must not be underestimated. For the foreseeable future, the majority of disabled Afghans will need to look to indigenous resources as they reconstruct their lives. These resources may be supplemented by Western knowledge, skills and technology; or they might be by-passed, despised and ignored by planners, politicians and aid advisors. The past forty years’ experience of development in the allied fields of health, education and welfare suggests that optimal results will come from facilitating the local community articulation of goals, and identifying and supporting local resources of skill and information. A systematic Information Approach to rehabilitation planning is increasingly being used in other developing countries, enabling planners to make appropriate and significant inputs of resources as their economic situation permits, to make better use of foreign assistance and expertise and to blend these inputs with traditional and invisible resources in local communities. This approach is a conceptual tool, not a panacea. It draws on the strengths of all previous strategies, rather than seeing them as mutually opposed or exclusive. In times of national reconciliation and reconstruction, in Afghanistan and other troubled areas, Information Based Rehabilitation facilitates the development of positive and constructive policies and implementation.

Notes 1 A useful bibliography on Community Based Rehabilitation appeared recently: O’Toole, B. (1990) An annotated bibliography on CBR, in: M. Thorburn, K. Marfo et al., Practical Approaches to Childhood Disability in Developing Countries: insights from experience and research, Main Appendix (St John’s, Canada, Project SEREDEC, Memorial University of Newfoundland). 2 More detailed consideration of these questions appears in Miles, M. (1985) Where There Is No Rehab Plan (Palo Alto, Hesperian Foundation), and Miles, M. (1986) Misplanning for disabilities in Asia, in: K. Marfo, S. Walker & D. Charles (Eds) Childhood Disability in Developing Countries. Issues in Habilitation and Special Education (New York, Praeger).

Disability and Afghan reconstruction 179 3 This sort of soft information is published in Directories by UNESCO and ILO, which date rapidly and are largely valueless for practical planning. 4 Forming a representative Association of Disabled Afghans with a unifying factor of ‘our disabilities’ has not been easy. Afghans normally have a strong family and tribal identity—even urbanites mostly have village roots. In the initially undifferentiated refugee camps, families moved around until whole villages and tribal groupings had been reconstituted. The comparatively alienated modern Westerner may more readily seek with others a common identity and cause as disabled people (or oppressed women, gays, blacks). Afghans who acquire disabilities will adjust some of their roles within family and local community, but are perhaps less likely to discover a new identity or to make common cause with people who do not share their ground and roots. The danger then of pressing for an Association would be that its membership and demands might be largely atypical. 5 Reports from these countries, e.g. Lancaster-Gaye D. (1990) Childhood disability in the Yemen, Interlink 2(1), 12–13, and Richardson S. (1983) Physical impairment, disability and handicap in rural Nepal, Developmental Medicine and Child Neurology, 25, pp. 717–726, give a fair impression of the situation faced by disabled people in rural Afghanistan.

References CADA (1989) Committee on Assistance to Disabled Afghans. Guidelines and Priorities (Geneva, Operation Salam). Dupree, L. (1989) Postwithdrawal Afghanistan: light at the end of the tunnel, in: A. Saikal & W. Maley (Eds) The Soviet Withdrawal from Afghanistan, pp. 29–51 (Cambridge, Cambridge University Press). Edwards, D. (1990) Frontiers, boundaries and frames: the marginal identity of Afghan refugees, in: A. Ahmed (Ed.) Pakistan. The Social Sciences’ Perspective, pp. 61–99 (Oxford, Oxford University Press). Handicap International (1990) Afghanistan Programmes. Annual Report for 1989 (Quetta (PO Bag 6), Author). International Rehabilitation Review (1989) Afghan Report XL (2&3) p. 2. Miles, M. (1986) Rehabilitation Broadcasts for Rural Areas (Brussels, International League of Societies for Persons with Mental Handicap). Miles, M. (1989a) Information based rehabilitation for Third World disability, Social Science & Medicine, 28, pp. 107–110. Miles, M. (1989b) Rehabilitation development in South West Asia: conflicts and potentials, in: Len Barton: (Ed.) Disability and Dependency, pp. 110–126 (Lewes, Falmer). Miles, M. (1990) A resource centre developing information based rehabilitation, in: M. Thorburn, K. Marfo et al., Practical Approaches to Childhood Disability in Developing Countries, pp. 261–276 (St John’s, Canada, Project SEREDEC, Memorial University of Newfoundland). Momm, W. & König, A. (1989) From Community-based Rehabilitation to Communityintegration Programmes. Experiences and Reflections on a New Concept of Service Provision for Disabled People (Geneva, International Labour Office). Peters, H. & Rehman, F. (1988) Community Directed Rehabilitation for Disabled Persons (Peshawar, Mental Health Centre). Protti, D. (1989) A need for information professionals, World Health, Aug/Sept 1989, pp. 26–27. Shafique, M., Khattak, S.M. & Idrees, M. (1988) A psychiatric glance at the Afghan

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refugees, in: S.H. Ahmed (Ed.) Psychiatry in Pakistan (Karachi, Pakistan Psychiatric Society). The Children of Afghanistan in War and Refugee Camps. A Documentation of the International Hearing Held in Stockholm April 4–5, 1987 (Stockholm, The Swedish Committee for Afghanistan, 1988). The Hedaya: A Commentary on the Mussulman Laws (1963) (reprint) translated by Charles Hamilton (Lahore, Premier Book House). The Pakistan Times, Handicapped of Afghan Jehad, 17 April 1990, p. 6. The State of the World’s Children 1990 (New York, UNICEF).

11 Disabled people, service users, user involvement and representation Peter Beresford and Jane Campbell Open Services Project, Tempo House, London

Abstract The issue of representation and representativeness has become central in debates about user involvement, disabled people and users of social care services. This article examines the emphasis of service agencies on the ‘unrepresentativeness’ of disabled people and service users; looks at how this is experienced by the latter and considers why the issue has gained such importance. It examines the different meanings attached to representation by recipients and providers of services. As well as looking at how the issue of representativeness is used to devalue, exclude and disempower disabled people and service users, the article explores its relation with the competing participatory and representative models and practices of democracy employed by disabled people and service providers.

The debate about representativeness Issues of representation and representativeness are central in debates and developments about user-involvement, although often they are not explicit and for disabled people and other recipients of social care services, they are part of a hidden history of involvement and empowerment which they struggle to make public. The first national survey of user involvement in statutory and voluntary social services found that the single problem which agencies most often identified was the ‘unrepresentativeness’ of service users who become involved (Croft & Beresford, 1990, p. 37). In discussions with many disabled people and other social care service users, as part of the same three-year project to identify existing experience and develop guidance to increase people’s say and involvement, the criticism which they reported most often encountering from service providers and associated agencies was that they were ‘unrepresentative’ (Croft & Beresford, 1991, p. 228). These issues around ‘representativeness’ are not new and they are certainly not confined to welfare services or their recipients. The same concerns and criticisms were raised by existing powerholders about the tenants’, child care, planning, neighbourhood and other grassroots organisations and movements which first blossomed in the community politics of the 1960s and 1970s. Other

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liberation movements; the women’s, black people’s and gay and lesbian movements, have all routinely come in for the same kind of criticisms. We can expect them to emerge whenever people and groups who have been disempowered struggle to empower themselves. Two developments have raised the issue of representativeness in the context of disabled people and community care with increased intensity: the growth of disabled people’s and service users organisations and movements and the political emphasis on market welfare since 1979. While these two developments ostensibly share the same concern—greater user involvement—this follows from different and competing world views; one based on the politics of liberation, the other taking as its starting point the politics of the market. Despite some overlaps between the two, in essence they are different. It is this difference in perspective which helps to explain the new emphasis on representation. The issue of representativeness has become a focal point for the expression of the conflict, and stressing the unrepresentativeness of service users has become one way in which service providers seek to win it. Because of this, an analysis of representativeness in this context is not only likely to be helpful in its own right. It also offers a way in which disabled people and social care service users can explore differences between their own politics and philosophies and those of traditional and new market welfare, and gain insights for developing strategies to deal with both the latter. The rise of representation as an issue in user involvement may ultimately have less to do with a struggle over and for power between service providers and recipients— the interpretation that is most often placed upon it—than with a fundamental conflict of political philosophy and practice. Ultimately it may be the nature of democracy rather than the identity of participating service users which is up for discussion.

Contrasting accounts and experience of the issue Service agencies tend to present representation as a technical and access problem. They express concern about getting an unreliable, inaccurate, incomplete or biased picture from service users. They say they are anxious to get as wide a range of involvement and as broad a view as possible from service users and are concerned that some service users may be disadvantaged by arrangements for involvement and that the most disadvantaged groups may be left out (Croft & Beresford, 1990, p. 37). Disabled people and other service users, however, report a different experience. They talk of being demeaned, devalued, undermined and excluded by having their involvement regularly challenged on grounds of being unrepresentative. They see this as calling into question their validity and legitimacy, as well as that of their organisations. They describe a number of objections which are commonly raised against them: that they aren’t really service users; they are not ‘typical’ of users—in terms of their general experience, their experience of involvement, their views, their personal characteristics, for example, their age,

Disabled people, service users 183 class, education, and that they have no right or mandate to represent anyone (Beresford & Croft, 1993, p. 151). Questions about the mandate of disabled people and service users ignore or deny the validity of the large and growing number of democratically constituted and controlled local, regional, national and international disabled people’s, service users and self-advocacy groups and organisations to which they belong and which they are elected or chosen to represent. Most of the other questions that are raised about the representativeness of service users who are involved are concerned with their identity. They are based on the mismatch between such disabled people and service users and dominant expectations, assumptions and stereotypes of them (Lindow, 1991, p. 133; Beresford & Croft, 1993, p. 18). The characteristics which are associated with disabled people and service users by non-disabled people and service providers, reflect our long history of being disempowered and the disempowering regimes we have been subjected to (Keay, 1993, p. 154). People who are involved in disabled people’s and service users’ organisations and movements are not exceptional or remarkable. We share the experience of our constituencies. Many of us have been in institutions. We have been at meetings where we didn’t have the confidence to open our mouths. It is the process of empowerment through our own organisations which helps us to transcend the identities which are imposed upon us through discrimination and restrictions on our rights and experience. Assumptions about the ‘representativeness’ of disabled people have been based on dominant assumptions about who we are, which our movements have challenged and have helped each of us to challenge successfully in our own lives. Such assumptions ignore the support that people gain from each other, the skills, experience and knowledge they acquire from being involved, and the blossoming of their confidence and selfesteem (Keay, 1993, pp. 153–155). In this sense, getting involved may not only lead to change, but also change us. We become different. We become ‘unrepresentative’ in ways some service providers do not want. We become confident, experienced, informed and effective. At the same time, because getting involved is not something that most people are encouraged or have the chance to do, the mere fact of being involved may be seen as making us ‘unrepresentative’.

The service world’s efforts to ensure representative involvement While service agencies argue that their concern is with the representative involvement of service users, service users point to the shortcomings of such agencies’ own efforts to meet this requirement. This includes their: a

token involvement of service users, often only involving service users on a minority basis, in ones or twos, in participatory structures, committees and forums which they set up;

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P. Beresford and J. Campbell frequent failure to involve black people and minority ethnic groups effectively; involvement of isolated and individual service users in preference to service users who are members of disabled people, self-advocacy or service user controlled groups and organisations; frequent requests that disabled people and service users speak for themselves as individuals, rather than for their organisations; application of a double standard, demanding representativeness of service users but not of other participants like professionals, managers and policymakers.

The extent of participation This leads to a broader issue; the extent of participation in society. Getting involved is the exception rather than the norm in western industrialised countries like Britain. Participation in formal political and civic institutions and structures is limited and biased according to class, gender, race and age (HMSO, 1986; Hansard Society, 1990; Haralambos & Holborn, 1991, pp. 163–165). Only a minority of people tend to get involved in campaigns, pressure groups and other forms of non-recreational collective action. People who do get involved are often treated with suspicion and dismissed as politically motivated or unrepresentative activists. Few of us are socialised through our education or employment experience to participate in the public sphere. It is not a strong part of our tradition or public culture. The nature and structure of public institutions is generally not consistent with it. Thus the context for people’s participation is not a positive one and it is far from typical for people to be involved. There are also additional exclusions and disincentives for disabled people and other recipients of social care services (Barnes, 1991). Nonetheless, the implication of the criticism that disabled people and service users who get involved are ‘unrepresentative’ is that fault lies with them and their organisations. Disabled people’s and service users’ experience suggests a different analysis. If authorities and service agencies want to ensure people’s broad-based involvement, then the responsibility lies with them to ensure that they have the institutional and organisational access and personal and collective support they are likely to need to take part effectively (Beresford & Croft, 1993). Significantly few service provider initiatives for user-involvement actually seem to make both of these available (ibid.)

Why the emphasis on representativeness? As we have seen, representation is a central issue in discussions and developments around user involvement. Why has it assumed such a significance, particularly in view of service agencies’ own limited efforts to enable people’s broad-based involvement? A number of explanations have been offered by

Disabled people, service users 185 service users; including that service providers feel that they know best what service users want and need; they are worried that what service users say will rock the boat and that it is a way of invalidating what service users say (Lindow, 1991, p. 133). In other words, people’s representativeness assumes importance if what they say threatens or challenges the status quo. This suggests that the function the argument serves is to neutralise and exclude. This may not always be the aim, but it is certainly frequently the effect. Questioning people’s representativeness serves to keep power and control with policy-makers and service suppliers; to keep things as they are and maintain the traditional unequal relationship between service recipients and service providers. It has become a focus for resisting people’s efforts to become involved and to sidestep requirements to involve and listen to them. It is also interesting that the kind of opportunities for involvement which service providers tend to favour as providing the most ‘representative’ and accessible involvement, namely consultative and market research approaches, are also those which offer disabled people and service users the least effective say and involvement, as well as having their own biases. The national user involvement survey found that nearly 90% of participatory initiatives set up by statutory and voluntary social services fell into these two categories. There were few which offered service users a direct say in decision-making (Croft & Beresford, 1990, p. 31).

Service users’ critiques of representation Disabled people and social care service users have also taken issue with the idea that how ‘representative’ they are affects the validity of what they say. Peter Campbell of Survivors Speak Out, for example, says: If a piece of nursing practice is bad and devaluing, does it become less so because my organisation only has 52 members, and even less so because they are all over 63 and come from Hendon? (Campbell, 1990). An assumption which often seems to underpin the emphasis on representativeness is that the views of people who become involved are necessarily different from those of other people. A women’s officer, offers some helpful insights into this in the context of consulting women about local government services. She made contact with a wide range of women’s organisations, including traditional civic groups, an Indian women’s group, girls’ and disabled women’s groups, enabling the views of a broad spectrum of women to be included. She found that: All women shared a remarkable agreement on a wide variety of issues. Feminists and non-feminists in particular agreed on a wide variety of

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One difference that did emerge, however, which may be important here, was that: feminists were more likely to express their ideas about council services as demands. In all, a striking feature of the consultation process was the lack of demands. Women could identify a lack of a service but this in the majority of groups did not translate into a demand for action. (Kettleborough, 1988, pp. 64, 66) This suggests that women who were more actively involved might not so much have different views as be more effective in achieving them. While disabled people and social care service users contest accusations that they are unrepresentative, they have also given serious consideration to the issue of representation (Keay, 1993, pp. 155–156; Beresford & Croft, 1993, p. 150). There has been a radical shift over time whereby disabled people have come to accept that they cannot represent a movement as individuals. They have to have some sort of mandate—a collective policy-making process—before they can make any decisions. In the last four or five years, by focusing on antidiscrimination, direct payments, campaigns for accessible transport, antipatronage campaigns, for example, against Telethon and Children In Need, disabled people have shifted from individuals speaking, to fighting collectively on a civil rights front.

Competing meanings of representation This leads to an important confusion and conflict over the meaning of representation. While policy-makers and service providers tend to use the term to mean ‘typical’, and call into question our ‘typicality’, what the word more often means for disabled people and service users is having our perspective, views, interests, demands and rights fully represented in discussion, forums and decision-making. Thus concern with the typicality of individuals is confused with the representation of collectivities. When people with learning difficulties, psychiatric system survivors, older people and people with impairments have demanded the right to speak for themselves, they have meant both the right of each individual to express their views and define their needs and also their collective right not to have other groups speaking for them. Not only do we have our own discourses, histories, organisations, policies and demands, but we want these to be fully included in mainstream political, social, economic and cultural debates and developments.

Disabled people, service users 187 The competing conceptions of ‘involvement’ which have characterised the user-involvement debate in community care, health and welfare, reflect these different interpretations of representation. They also mirror again the different world views of the service world and its recipients. While the former is preoccupied with services and people’s relation to them as consumers, the latter are concerned with rights, empowerment and appropriate support to meet people’s needs and maintain their independence. It is as part of this broader concern that disabled people and other recipients of social care service seek to be involved and represented in debates and developments about community care policy and services.

Self-organisation and participation The long-standing concern of the disabled people’s movement and other movements of social care service users has been to enable as broad-based involvement in them of their constituencies as possible. The starting point for this has been developing grassroots groups and organisations under our own control. Involving disabled people as fully and widely as possible in its own activities has been a priority of the disabled people’s movement throughout its modern history. In 1975, members, of the Union of the Physically Impaired Against Segregation (UPIAS) stressed that “for the Union, mass participation by disabled people was crucial” (UPIAS/The Disability Alliance, 1976, p. 6). When Mike Oliver made the case for the disabled people’s movement to be seen as a new social movement, one of the common criteria which he identified was that: They are culturally innovative in that they are part of the underlying struggle for genuine participatory democracy, social equality and justice. (Oliver, 1990, p. 13) While Tom Shakespeare suggests that it may be more helpful to see the disabled people’s movement as a liberation movement rather than a new social movement, he also emphasises that: ‘Liberation must involve the most widespread possible action and mobilisation, rather than mere changes in elites or legislation’ (Shakespeare, 1993, p. 254) and he cites the British Council of Organisations of Disabled People’s commitment to “mass action rather than elite action”. This commitment to participation is true of other movements, including the survivors movement. The disabled people’s and service users’ movements have combined self-help, support and political change roles which in the past have often been separated, indeed polarised against each other. This has helped encourage and enable people to get involved in them who might not otherwise have felt able to. There has been a strong understanding in these movements that people need support, in all the forms identified earlier, if they are to be able to participate.

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The commitment to participation is also reflected in the structures of our organisations. BCODP has changed its structure three times to make it more democratic and to include more people. Survivors Speak Out places an emphasis on supporting people to participate (Beresford, 1993, p. 21). It is also reflected in the breadth and coherence of the movements’ scope and activities. Disabled people’s organisations have clear objectives and their own philosophy. There is now a disabled people’s culture and disability arts. The movement is multi-faceted. There is direct action campaigning on the street. There is letter writing and political work in parliament. There is intellectual work and arts. The movement involves all of these and people cross over. People who write the books are also on the picket line. This has given us a much fuller representation because we have a much more holistic approach and understanding. The cultures of the disabled people’s and service user movements extend beyond the office and print based ones of the service system, to include poetry, cartoon and illustration, music, comedy, drama, demonstration, cabaret and song. We have developed many different ways of expressing the experience which the welfare world compartmentalises as ‘community care’. There are further expressions of the participatory nature of our different movements. There are problems in the way of full participation in disabled people’s and service users’ organisations (Shakespeare, 1993, p. 256). The movements tend to frame these in terms of issues of inclusion and equal opportunities as much as representation. It is difficult to include people and other groups facing additional oppressions. While an inclusive approach to involvement demands that movements challenge their own sexism, racism, heterosexism and ageism, and service users’ and disabled people’s organisations are developing strategies to do this, they also face problems because of their inadequate resources. They often lack resources to reach out to people as much as they would wish to and while lack of resources should not be made an excuse for failure to involve people, it does play a part. Involving people equally costs money, as well as requiring antidiscriminatory attitudes, policies and practice.

The service world and representation The approach of disabled people’s and service users’ organisations to people’s participation is significantly different to that of service agencies. This seems to be associated with their different structures and cultural traditions. The process of decision-making in statutory services involves both political and administrative structures and arrangements. Most arrangements for participation beyond the formal electoral provisions for local democracy, are linked with the administrative rather than political structures. This is where most of the consultative, planning and sub-groups, committees and working parties, on to which disabled people and other service users are increasingly invited, are located. These administrative structures are based on formal hierarchies rooted in differences in power and status. Some provisions for participation have been linked with the

Disabled people, service users 189 political structure, like the council equal opportunities sub-committees set up in a number of Labour authorities and disability sub-committees, like that established in the London Borough of Greenwich. Such participatory arrangements have been characterised by two important features. First, when they are grafted on to existing formal provisions for local representation, there is often a failure to reconcile the two sets of arrangements. This first became apparent with the provisions for public participation established with town and country planning legislation in the late 1960s and early 1970s. It means that when the results of such consultations and informationgathering exercises do not accord with existing council policy, priorities and plans, they are often ignored. Because of this, disabled people’s organisations and community organisations before them have sometimes found it more helpful to by-pass or disregard specific provisions for participation and to focus their efforts on the ordinary electoral arrangements for local representation, lobbying their MPs, local councillors, council committees and so on (Dennis, 1972, pp. 213, 280). It is also a reason why some disabled people and their organisations see seeking election as councillors as a more effective route to disabled people’s involvement. While the frameworks for people’s participation may be different in voluntary and commercial services, there are still overarching constraints at work, shaping the nature and extent of service users’ involvement. In voluntary organisations, for instance, this is conspicuously affected by charity law and in commercial organisations by profit imperatives. Second, while we have seen that service agencies have been thorough-going in their critique of the representativeness of disabled people and service users, they have still generally relied on representation in a much more narrow sense when making provisions for our participation. This has mainly entailed setting up participatory structures based on allocated places for user representatives. Thus, while their discussion raises fundamental questions about the nature of representation, their practice is typically based on traditional formal representation. There is an important contradiction here, since it is well-documented that in practice such representative arrangements have many in-built biases and exclusions on the basis of age, race, gender, class, disability and sexual identity (User Centred Services Group, 1993). It also acts as an additional Catch 22, with service agencies setting up disabled people and service users to fail their own representativeness test.

Competing models of democracy Steve Dowson of Values Into Action, the national campaign with people with learning difficulties raises a broader question about such arrangements: We have the tradition of involvement through the representative democratic processes of the town hall. Doesn’t the need for other involvement opportunities imply that these processes have failed? And if new models of

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This draws us to a fundamental issue raised by the representation of disabled people and service users in service agencies and service provision. As we have seen, the efforts of disabled people to be involved and the frequent efforts of service agencies to exclude them reflect a struggle for control, sometimes polarised over the issue of representativeness. It is probably in this sense that the political nature of the debate about representativeness is most often understood. While there is no doubt that the issue hinges on a struggle for power between traditionally disempowered disabled people and service users and traditionally disempowering services, it may also be helpful to explore another political conflict which seems to be being played out here. This is a conflict between competing models and cultures of democracy. While movements of disabled people and other service users have placed an emphasis on a participatory model of democracy, the service world is firmly located in a representative system of democracy and bases its efforts to involve service users on a representative model of democracy. However, service agencies and authorities do not seem to have thought through the implications of these conflicting approaches to democracy. This may be because such analysis of user-involvement has been limited and it has largely been framed in consumerist terms. Disabled people’s and service user organisations, on the other hand, have clearly given considerable thought to democracy, both in their own organisations and in society more generally, not least because we are so used to living in a culture where other people speak for us or we are asked to speak for ourselves only as individuals. If anything, the disabled people’s and service users movements have taken both debate and developments around participatory democracy beyond the discussions of the New Left because of our emphasis on self-organisation, our firsthand understanding of exclusion and our recognition of people’s need for support if they are to be empowered and involved (Held, 1987, pp. 254–262). Representative and participatory models of democracy do not sit easily together. The inherent conflicts between them help explain many of the problems over ‘representativeness’ in user involvement and may also point to the limits of serviceled schemes for user involvement. Service agency criticisms of disabled people and service users as unrepresentative often ring bells for us and remind us of our own reservations about conventional political processes and structures and of being representatives within them. That is why we have sought to develop alternatives concerned with people’s large-scale involvement and we come from an emerging participatory tradition of democracy. The irony is that most arrangements for ‘user involvement’ force us to return to a narrow representative one. The efforts of disabled people and service users to have a say in social care services not only represent a challenge to traditional services but also to tradi-

Disabled people, service users 191 tional notions of representative democracy and democratically accountable organisations and structures. The strength of resistance we encounter is perhaps not surprising in view of this.

Conclusion There are important questions here for service agencies. Can they reconcile schemes for user involvement and empowerment with the overall political structures within which they are set? How can such schemes avoid being marginal or tokenistic? But more important perhaps, there are questions for us. How can we make best use of such participatory opportunities? How much can we really expect to get out of them? Service users and disabled people’s organisations are under constant pressure. There is pressure to mimic and fit in with the representative democracy of service providers in order to gain any access to their decision-making process. There are demands from funders and the Charity Commissioners which may institutionalise or pull us away from our own objectives and ways of working. But we and our organisations are now coming from a position of increasing confidence and strength. When there were invitations to get involved, we often used to be reactive. We have now formulated our own well-researched and wellworked out policies. A lesson many of us have learned from our own movements may offer a helpful last word on representation here. It makes sense to spend more of our energy participating in our own initiatives rather than being represented in service systems. That is where the real promise of participation, empowerment and our representation in society lies.

Acknowledgements We would like to thank all the disabled people, survivors, other service users and allies who made it possible for us to write this article.

References Barnes, C. (1991) Disabled People in Britain and Discrimination: a case for anti-discrimination legislation (London, Hurst & Company). Beresford, P. (1993) Linking up, OPENMIND, No. 62, p. 21. Beresford, P. & Croft, S. (1993) Citizen Involvement: a practical guide for change (London, Macmillan) Campbell, P. (1990) Self-advocacy: working together for change, paper presented at MIND Annual Conference, Brighton. Croft, S. & Beresford, P. (1990) From Paternalism To Participation: involving people in social services (London, Open Services Project/Joseph Rowntree Foundation). Croft, S. & Beresford, P. (1991) User views, Changes, 9, pp. 228–229. Croft, S. & Beresford, P. (1993) Getting Involved: a practical manual (London, Open Services Project/Joseph Rowntree Foundation).

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Dennis, N. (1972) Public Participation and Planners Blight (London, Faber & Faber). Hansard Society, (1990) Women at the Top (London, Hansard Society Commission Report). Haralambos, M. & Holborn, M. (1991) Sociology: themes and perspectives, 3rd edn (London, Collins Educational). Held, D. (1987) Models of Democracy (Cambridge, Polity Press). HMSO (1986) The Local Government Councillor: Committee of Enquiry into the conduct of Local Authority business. Research, Vol. 11 (London, HMSO). Keay, D. (1993) Who do you represent . . .?, in: P. Beresford & T. Harding (Eds) A Challenge To Change: practical experiences of building user-led services (London, National Institute for Social Work). Kettleborough, H. (1988) Consulting women in the community about local government services, Critical Social Policy, No. 21, pp. 56–67. Lindow, V. (1991) Sources of invalidation of health service users, Changes, 9, pp. 124–134. Oliver, M. (1990) The Politics Of Disablement (London, Macmillan). Shakespeare, T. (1993) Disabled people’s self-organisation: a new social movement?, Disability, Handicap & Society, 8, pp. 249–264. The Union of the Physically Impaired Against Segregation & The Disability Alliance (1976) Fundamental Principles of Disability (London, UPIAS & The Disability Alliance). User Centred Services Group (Ed.) (1993) Building Bridges—between people who use and people who provide services (London, National Institute for Social Work).

12 Disabled people in a newly industrialising economy Opportunities and challenges in Malaysia Denison Jayasooria, Bathmavathi Krishnan and Godfrey Ooi Centre for Community Studies, Kuala Lumpur, Malaysia Abstract Malaysia is one of the fastest developing countries in the world and by the year 2020 it will become an industrialised nation according to the Malaysian government’s strategic plans. This dynamic situation poses numerous opportunities and challenges for disabled people in Malaysia. Two positive outcomes are opportunities in the employment sector as well as infrastructure developments. However, there are new challenges especially with regards to mainstreaming of educational and vocational training along with the need for a dynamic placement service. The rise in industrial accidents creates a new challenge, along with the changing demographic trends which could have a negative impact on disabled people. What is striking is that disabled people and their organisations are beginning to articulate these changes and making a claim for inclusion in Malaysian society.

Introduction Malaysia is undergoing rapid socio-economic development, recording 8% economic growth in the period 1991–1993 and 8.5% in 1994 and 1995. The Malaysian government policy entitled VISION 2020 sets a target that by the year 2020, Malaysia will be an industrialised nation (Mahathir, 1990). Malaysia has a population of 19.5 million people and the government estimates that 1% of the population have some form of disabilities and therefore regarded as one of the disadvantaged minority communities in Malaysian society. As they are not an homogenous group and they may have special needs among the different groups, yet they share similar issues and challenges in an industrialising Malaysia. A majority of disabled persons in Malaysia have impairments which are birth related, congenital or acquired in early childhood. However, the number of persons with disabilities acquired during working life through industrial injury or automobile accidents is on the increase in Malaysian society. Ian Tugwell (1992) reveals in countries where disabilities are congenital or acquired in nature, there is often a lack of special services especially adequate education and vocational training. Therefore, by the time these disabled

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persons reach employable age they are doubly handicapped: uneducated and untrained to enter work. He further points out that due to this situation they become ‘an underclass without chance of escaping from the poverty trap. Their dependence on their family members for sustenance and shelter, and their inability to contribute anything to the family budget means their existence impoverishes the others’. This hard reality of the Malaysian situation might sound gloomy, however, there are positive indicators with many new policies and programmes adopted (Jayasooria et al., 1992). The seeds of change have been sowed and the coming years will reveal our true intentions. It is heartening to note that the Malaysian Government has not forgotten that the economic success of the country being attained through industrialisation would have little meaning if there is not the accompanying development of a caring society. This is borne out by the fact that in the document on Vision 2020, our Prime Minister, Dato’Seri Dr Mahathir, has given some emphasis to the need of nurturing a caring and just society as among the nine challenges in building up a vibrant and modern nation (Mahathir, 1990). It is significant to note that in a newly industrialising country like Malaysia there are numerous opportunities, but at the same time there are challenges which need to be faced and overcome for the common good.

Employment opportunities and challenges Both the public and voluntary sectors provides training opportunities for disabled people. The Ministry of National Unity and Social Development, according to Haji Zainul Ariff (1993), currently runs one rehabilitation centre in Cheras for the orthopaedically handicapped which provides vocational training in tailoring, TV and radio repairing, carpentry, motor repairing, arc/gas welding, general machine work and handicraft. Since its establishment it has trained 1600 physically handicapped persons. Plans have been approved under the 6th Malaysia Plan to set up an Industrial Training and Rehabilitation Centre at Bangi, Selangor. When completed it will be able to accommodate 350 trainees. In order to encourage the disabled in business the Ministry provides a grant of RM2000.00 and in 1992, 109 persons were assisted. Likewise an incentive allowance of RM50 is provided for those earning RM20 to RM300 and in 1992, 3119 disabled persons received this allowance. Voluntary organisations too play a part. The Malaysian Association for the Blind have set up the Gurney Training centre in Kuala Lumpur (KL), the rural training centre in Pahang and a placement service agency in KL for the blind. Bethany Home has set up small business which employs mentally retarded young adults at their Kedai Bethany (second hand goods shop) and Cafe MMM (fast food outlet). Others have co-operated with the private sector to integrate the disabled like the Society for the deaf with KFC in Kuala Lumpur who employ 17 deaf persons. These are little examples of attempts made. While they are encouraging, they are however inadequate to meet the needs of the total

A newly industrialising economy 195 disabled population in Malaysia. This is because as Ganapathy (1992) estimates only 10–20% of the 89 000 disabled persons who are considered to be economically active are earning a wage or are self-employed. In response to this need as well as to tap a potential work force the Ministry of Social Welfare (as it was then known) in 1987 formulated a policy with the view to making at least 1% of jobs available to the disabled in the public sector. The example of the Welfare Ministry was emulated by the Ministry of Human Resources when in 1990 it called upon the private sector to make at least 1% of jobs in industry available to the disabled. A National Committee for the Promotion of Employment Opportunities for the disabled persons in the private sector was formed with the Minister of Human Resources serving as its chairman. One of its first programmes was the launching of a campaign to promote the employment of disabled persons. These are very positive policies and programmes introduced by the Malaysian government in the interests of the disabled. There were 744 handicapped persons employed in the public sector by the end of 1991. In appeals made by the Minister of Human Resources between 1990 and 1991 a total of 2152 jobs were offered by the private sector. However, only 1249 were taken by disabled persons between 1990 to 1993. Ganapathy (1992) identifies five reasons for insufficient takers. First, the absence of a register of job seekers among disabled persons. On the part of both Government and voluntary agencies this is not well co-ordinated. Secondly, the prejudice against the disabled. Thirdly, the poor access to public facilities. Fourthly, the location of employment, as 70% of the jobs offered were located in the Klang valley and fifthly, the reluctance of employers to modify or adopt machinery and facilities for the disabled. We note that many of the existing voluntary organisations were not able to make a dynamic response to the calls of the Government in providing the disabled workforce. This was because many of the disabled had not been adequately prepared to meet the new expanding employment market. This inability on the part of the non-governmental sector demonstrates that much more needs to be done to prepare disabled people for the world of work. Existing vocational training services must be able to provide disabled people with the requisite skills so that they will be able to function in the modern work-place efficiently and effectively. At the same time, new avenues for the training of the disabled must be explored while existing services may need to be reviewed and upgraded. Tugwell (1992) advocates the mainstreaming of vocational training as opposed to specialised centres set up exclusively for disabled people. This is the position recommended by the International Labour Office as reflected in their documents. It reads ‘wherever possible, disabled persons should receive training with and under the same conditions as non-disabled persons. Special services should be set up or developed for training disabled persons who, particularly by reason of the nature or the severity of their disability, cannot be trained in company with non-disabled persons’. In this context, Tugwell (1992) highlights

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the role of the social welfare department and voluntary agencies should play namely ‘to ensure the accessibility of mainstream training to disabled people, to offer social support services to the disabled undergoing training and, where necessary, advisory services to the training centres in helping to develop easy use of these facilities’. In order to enhance the untapped potential of disabled persons in the workplace there is the urgent need for skilled placement services on a nationwide scale. This service must not project a welfare or charitable image and as Tugwell says ‘should have more in common with the world of personnel management than that of social work’. The placement officer must fill ‘the role of honest broker, acting objectively in the best interests of both the employer and the jobseeker. The placement officer is the ‘market maker’ bringing together the demand and supply’ according to him. Ganapathy, like Tugwell, places the setting up of placement services on a high priority. He identifies nine principle duties of a place service which is very important. They are: • • • • • • • • •

help disabled persons to gain or recover working habits; give help and guidance on social problems which may be impeding resettlement; build up or restore morale and self-confidence; provision of information concerning employment and training opportunities to the disabled; provide medical, psychological and vocational assessment on capacity to work in particular types of work; arrange for vocational training for the disabled if necessary; find suitable employment for the disabled; assist the registrant on the date of interview; follow-up visits to the place of employment to see if disabled is settling in and to discuss with the employer to remove possible obstacles which would prevent the disabled person from being satisfactorily settled in work.

It is therefore imperative that both the Ministry of National Unity and Social Development, and the Human Resources Ministry set up professional placement services nationwide and network with both the private and voluntary sectors. Employment and vocational training for the disabled cannot be looked in isolation from other factors. For example, the educational background of disabled people would be very important in helping to determine the kind of vocational training that they need later on. There should be a mechanism whereby policy-makers in education and vocational training for the disabled can meet to look at the needs of the disabled in a comprehensive manner. Such cooperation and co-ordination would provide a clearer understanding with regards to the linkages between education and vocational training for the disabled. This, in turn, should lead to more effective and related planning at the respective levels.

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Opportunities and challenges in infrastructure developments While the general public are able to benefit from the increased number of facilities for the purpose of investments, travel and entertainment brought about by industrialisation, many disabled people are not able to benefit from it. One very glaring reason for this is the barriers and the hazards to disabled people in getting to these facilities. These include the many steps and drop-offs that hinder the people on wheelchairs, and the uncovered drains that are hazardous to the blind in particular. The regular experience of many disabled persons are that they are regularly confined to their homes because the lack of access to public facilities namely public transport, inaccessible public buildings, toilets. It is often concluded that all these have been provided for without taking disabled persons into account. One common assumption among Malaysians, says a disability activist, Thanasayan (1991) is that the general public thinks that ‘the disabled do not need access to public buildings facilities because they remain at home or in specialised institutions’. However, a radical change has taken place when the amendments to the Uniform Building By-Laws 1984 was passed in 1990 to provide facilities for disabled persons. Under the amendments all new public buildings will have to provide facilities and owners of existing buildings have 3 years to make adaptations. More recently, in 1992, the Malaysian Standard Code of Practice for access for disabled persons to public buildings was released by the Standards and Industrial Research Institute of Malaysia (SIRIM). This Malaysian Standard specifies the basic requirements for elements of buildings and related facilities so as to permit access by people with disabilities. These requirements are applicable to all buildings that disabled people may use as members of the general public as visitors, or for the purposes of employment. If both these documents are gazetted by all the state authorities, it will then be obligatory on the developers to take into consideration the needs of the disabled when planning the construction of public facilities. This will be an important contribution to the betterment of the disabled in terms of opportunities for employment, socialisation and so on. However, only six of the 13 States and one of the two Federal Territories have gazetted these two new provisions for disabled people. A major set back experienced by disabled people is that they are excluded from the Light Rail Transit which is being developed in the Klang valley and will come operational in the middle of 1996. Disabled people and their organisations held various dialogues with all the relevant authorities. The phase one operators, STAR have refused to allow disabled people, citing reasons of safety whereas the phase two operators PUTRA have publicly declared that their system will be fully equipped for wheelchair users. However as Thanasayan (1995) rightly points out ‘the problem . . . lies in the fact that PUTRA’s route will be connected with STAR’. There is an essential need for political will to ensure that the rhetoric of a caring and just society for all in Malaysia be translated into reality through clear policies which have specific relevance to all dimensions of life for all

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Malaysians. In the coming years both disabled people and others within Malaysian society will have to continue to articulate issues access related to public transport. Malaysia has missed a unique opportunity as a newly industrialising country to develop infrastructure that is accessible for all its people.

The challenge of industrial accidents and disability benefits The alarming rate of increase in industrial accidents has caused great concern to the government. Figures available from The Social Security Organisation, Malaysia show that the total cases of industrial accidents in 1982 was 56 698 cases and this rose to 124 898 in 1991 (Teoh, 1992). Besides costing the nation some RM4 billion these industrial accidents have also resulted in a number of deaths and people becoming permanently disabled. An average of 80 000 cases of work related injuries are reported every year with about 3000 cases involving permanent disability. In view of this the government has set up a supervisory body, the National Safety and Occupational Health Council and an Institute of Occupational Safety and Health to focus attention on occupational safety and health in the workplace as well as to foster a ‘self-regulating safety culture’. Furthermore, an Occupational Safety and Health Act has been passed in Parliament. The main aim of the new law is to: • • •

ensure workers are shielded from safety and health risks and their welfare taken care of; give worksite protection to non-employees; improve work conditions in line with their psychological needs and gradually come up with new codes and guidelines.

The Act is an attempt to reduce the incidence of industrial accidents. While preventing accidents is very important and essential, some emphasis should be given to the rehabilitation of injured workers who become permanently disabled. When a person gets injured on the job, an assessment is usually made by SOCSO to determine whether the injured worker can continue with his/her job or should be paid a disability benefit. More often, injured workers accept benefits and do not continue in their jobs. There should perhaps be reorientation in the approach when considering SOCSO benefits. Doctors responsible for assessing impairment resulting from industrial injury should, in cooperation with the rehabilitation officers from SOCSO, focus their attention more to determine residual functional capacity in the injured worker to assess what he can still do with the view of enabling him to be gainfully employed. In cases involving major impairments such as loss of limbs or loss of use of limbs, he may not be able to return to his original job, but it does not mean that he cannot be considered for an alternative suitable task. This will certainly help restore selfesteem and dignity in the injured worker after having gone through a traumatic experience following the incidence of the impairment. This will also be in tandem with our nations aim of promoting a caring society, whereby disabled

A newly industrialising economy 199 people are accepted as contributing members of society, participating in the national workforce. After having explored the possibility of re-employment resettlement, or alternative placement only then the disability benefits should be considered based on low or lack of residual functional capacity. This would be a more equitable approach in rehabilitating the injured worker if he still has income earning capacity. However, having worked out the resettlement in a job, the injured worker will still have to contend with several other factors in an industrialised society which may pose a barrier to his re-employment or resettlement. First, he will need an architecturally barrier-free environment to enable him to get to his workplace. Secondly, there should be suitable transportation for him to commute to work. Thirdly, the work-place itself may have to be modified to provide access into the building by way of lifts, ramps, etc., and fourthly, he may also need to use adaptive gadgets to enable him to work. Apart from the physical barriers, the injured worker may also be faced with attitudinal barriers from employers who are reluctant to give them an opportunity. An industrial society characterised by high productivity levels and profit making may have little consideration in terms of providing equal opportunities for the disabled to participate. However, this does not mean that the disabled should be left out completely. There are areas of work where the disabled, with the use of adoptive technology within a conductive environment have proved to be on par with their able-bodied counterpart. With the advent of computer technology many industries have restored to automation in their production process. This has actually opened up new avenues for the disabled. Tedious, complicatred tasks can now be operated from simple panel controls and such jobs would be suitable for disabled people who have impairments restricting the full use of their limbs.

Support services to disabled persons and families We are reminded by social policy thinkers concerning the impact of industrialisation, namely the ‘logic of industrialisation’. Christopher Pierson (1991) provides us a useful summary. Some societal developments cited which have direct relevance to disabled persons are: • • • • • •

the decline in agricultural employment and the rural population; extensive urbanisation; the growth of large cities and of typically urban ‘way of life’; the requirement for a skilled, literate and reliable work-force; the changing patterns of family and community life; a growing division between working and non-working populations and between ‘home’ and ‘work’; decreasing infant mortality and increased life expectancy.

In the Malaysian context the demographic trends as highlighted by Annuar Maaruf (1991) indicate a shift from the rural to the urban and it is estimated

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that by 2020, 64% of the population will be in urban centres. With the attainment of higher education levels and expanding employment opportunities, more women are expected to participate actively in the economy. By the year 2000, it is forecast that the female labour participation rate will increase from 49% in 1990 to 52%. Holding this rate constant up to the year 2020, the female labour force is estimated to total 5.3 million. It is also estimated that those in the age of 65 years and above will also register an increase due to the expected overall improvement in life expectancy. These changes have tremendous impact upon disabled people as the largest number of care providers are found in the informal sector, i.e. immediate family members. This transition from rural to urban society, as well as the increased involvement of women in the work force will have tremendous side effects upon disabled people. There is invariably the tension between the role of the women to care and their opportunity for self-development. There is no simple answer to this as women have been exploited as unrecognised and unappreciated care providers. There needs to be a balance drawn with responsible joint parenting responsibilities of both male and female members in the family. There must be increased support services to family members like day care, respite facilities and residential services in small group homes in the community. If this is adequately provided that disabled persons will be able to realise their potential in society.

Conclusions The traditional approach in providing assistance centres around the perspective of charity or welfare. This takes a paternalistic orientation and creates a subsidy and dependency mentality. This is the dominant philosophy which undergirds a majority of the services provided for disabled people in Malaysian society (Jayasooria et al., 1992). This approach is currently being challenged by disabled people and their organisations in Malaysian society. Disabled people do not want to be sidelined as they realise that Vision 2020 provides numerous new opportunities. They are seeking to directly benefit from the economic growth. Disabled people want social organisations to adopt a strategy for self-reliance and helping the vulnerable break the cycle of dependency. This is where the National Welfare Policy is relevant as it advocates a strategy towards developing resilience in individuals and communities. We firmly believe that all things equal, or supposedly so in a democratic society like ours, disabled people should be able to enjoy the same benefits accruing from industrialisation since they are meant for everybody in the country. However, as disabled people are a neglected, disadvantaged minority, specific attention must be provided in line with equalising opportunities which will enable their full participation and integration into Malaysian society. Currently, there is no comprehensive National Policy for the development of programmes and services for disabled people in Malaysia. It is our recommendation that a specific policy be developed which could serve as the framework for action. This policy must be in line with the dynamic agenda of Vision 2020. Recently, the United Nations

A newly industrialising economy 201 released the Standard rules on the equalisation of opportunities for persons with disabilities (Resolution 1993/19), this could serve as a helpful background document. The Malaysian National Policy on Disabled People should ensure that disabled people as citizens can enjoy the same opportunities as others in Malaysian society.

References Ariff, H.Z. (1993) Role and Responsibility of the Ministry of National Unity and Social Development, Malaysia in the Socio-economic Upliftment of Disabled Persons, Paper presented at the Seminar on the Role of the Private sector in the socio-economic upliftment of disabled persons, 22–23 November 1993, Kuala Lumpur. Ganapathy, R. (1992) The Placement of Disabled Persons in Employment—Some Problems and Strategies, Paper presented at the Seminar on Education and Training of the Handicapped and their integration into the labour market, October 27 & 28, 1992, Kuala Lumpur, p. 1. Jayasooria, D. et al. (1992) Disabled persons, the caring society and policy recommendations for the 1990s and beyond, in: Cho Kah Sim & Ismail Muhd Salleh (Eds) Caring Society, Emerging Issues and Future Directions (Kuala Lumpur, ISIS). Mahathir, M. (1990) Vision 2020, Malaysia the way forward (Kuala Lumpur, Government printers). Maaruf, A. (1991) Population Trends and Manpower Resources, Paper presented at Seminar 2020, The role of professional sector in national development, August 12, 1991. Pierson, C. (1991) Beyond the Welfare State? The New Political Economy of Welfare (Cambridge, Polity Press). Recommendation Concerning Vocational Rehabilitation of the Disabled (Recommendation no. 99, ILO). Teoh, A. (1992) Towards safety at the work site, Malay Mail, November 30, 1992. Thanasayan, A. (1995) The Star, December 28, 1995. Thanasayan, A. (1991) Sunday Star, August 4, 1991. The Malaysian Economy in Brief (1995) Statistics Department, Malaysia. Tugwell, I. (1992) Enhancing the Integration of Persons with Disabilities: opportunities and challenges in South East Asia, Paper presented at the First ISIS South-East Asia Round table on Social Development: Managing the social impact of Industrialisation, 20–21 January 1992, at Kuala Lumpur.

13 The disability rights movement in Japan Past, present and future Reiko Hayashi The University of Utah, USA

Masako Okuhira Japanese Society for Rehabilitation of Persons with Disabilities Abstract This paper introduces the history of the modern disability rights movement in Japan, which has been a driving force for change in social norms and policies, and for improving the lives of disabled persons and their families. It presents the traditional social norms and policies that resulted in the confinement of disabled people in their parents’ homes and in institutions, a radical movement of people with cerebral palsy active in the 1960–1980s, the emergence of the independent living movement in 1980s, and the current disability rights movement and its future challenges. This paper is based on a review of documents and on interviews conducted during the spring of 2000 in Japan with disability rights advocates and personnel working for centres for independent living.

Only two decades ago, Japanese society did not perceive confining disabled persons in institutions for life as a human rights violation. Today, the disability rights movement in Japan boasts 90 centres for independent living throughout the country that provide community-based services, as well as advocacy work. It also supports the independent-living movements of disabled people in other Asian countries. Its goal is the realisation of nationwide consumer-directed personal-attendant programmes that enable persons with any disabilities, regardless of their severity, to live independently in their communities. This paper introduces the history of the disability rights movement in Japan which has been the driving force for change in social norms and policies, and for improving the lives of disabled persons and their families. After examining pre-movement conditions, this paper describes a radical movement of people with cerebral palsy, active in the 1960–1980s, within the cultural milieu of Japanese society. Furthermore, it recounts the emergence of the independent-living movement in the 1980s and discusses the current disability rights movement, including the successes of independent-living centres and the challenges they face as providers of community-based care. This paper is based on a review of documents and interviews of personnel working for centers for independent living and of disability rights advocates in

The disability rights movement in Japan 203 the spring of 2000. The interviewees were asked about their personal history— their childhood experiences, their experiences in school, if ever attended, and institutions, their first contact with and their involvement in the disability rights movement, and their current activities and future directions. The personal history of those interviewees embodies the disability right movement that freed people from confinement in parents’ homes or institutions to living independently and actively in the society.

Japan’s traditional approach to welfare A centralised government was established in Japan in 1874 and the Social Relief Regulation was enacted to provide rice to the extremely poor and the indigent elderly, young, sick or disabled. Blood relatives and neighbours, however, were expected to support the underprivileged and, consequently, governmental relief was severely limited. As the nation waded through WWI and the depression that followed, the labour movement intensified. Laws were introduced to expand governmental obligations to the poor, together with medical insurance and a pension programme for employed workers. Disabled citizens, however, were still assumed to be dependents of their parents and siblings, and no public policies existed to support them (Ministry of Health & Welfare, 2000). After WWII, three welfare laws were enacted: the Public Assistance Law, the Child Welfare Law, and the Law for the Welfare of People With Physical Disabilities. The Law for the Welfare of People With Physical Disabilities enacted in 1949 was the first national policy in support of disabled persons. It was, however, enacted to provide rehabilitation services to disabled veterans to restore their vocational capabilities. Under this law occupational rehabilitation facilities were established in some cities. Disabled persons other than veterans were still left to depend on their blood relatives or receive public assistance for their survival. A small minority were sent to live in only a few publicly funded alms houses (Tateiwa, 1990; Ministry of Health & Welfare, 2000). In 1961 the National Pension was inaugurated. This system was initially developed only for employed workers. Later it was expanded to cover the selfemployed and farmers, and eventually it became a universal national pension. Employers and workers paid into it and workers received the benefits when they reached a retirement age. A supplementary and provisional system with noncontributory pensions (welfare pensions) was also adopted out of consideration for fatherless households, people with disabilities, and those who had already reached a certain age and did not have sufficient time to contribute (Ministry of Health & Welfare, 2000). For disabled persons, the National Pension included the Welfare Pension for People with Disabilities. The amount of the pension, however, depended on the income of family members, as well as the severity of the impairments. Even though the disabled persons were adults, their parents and other family members were expected to support them. Therefore, many disabled persons could not receive the pension, and were kept dependent on blood

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relatives or entered into residential institutions which were rapidly established in the 1960s (Wakabayashi, 1986; Tateiwa, 1990).

From home confinement to institutional segregation The 1960s saw the parents of disabled persons organise themselves to demand residential institutions for their disabled children. The social norms and policies demanded they care for their children even through adulthood. The parents claimed that institutions were needed when they were no longer able to care for their children. As the post-WWII economic recovery gained momentum, Japanese society began to respond to these ‘welfare’ demands. Residential institutions for disabled persons were built and the institutions for occupational rehabilitation initially established for disabled veterans were turned into residential facilities for other disabled persons (Tateiwa, 1990; H. Kondo, interview, May 26, 2000). Those institutions became places for disabled persons to live permanently, segregated from the greater society. At the same time, many disabled persons still remained hidden in their parents’ homes. It became common for disabled children to be separated from their families at an early age and sent to residential facilities. Many of those children lived there until they reached 18 years of age and were then moved to residential facilities for adults to live there rest of their lives (Irube, 1990). Those residential institutions had strict rules implemented to control all aspects of the residents’ lives. It was a life of segregation and obedience, without privacy. The living conditions were often harsh and the human rights of the residents were customarily violated. A woman who stayed in an institution for disabled children for 10 years witnessed the maltreatment of children. Some who became sick were left without proper medical treatments and died. She recalled children with severe impairments who were left in unsanitary conditions and never bathed. They smelled badly, and flies gathered over them and laid eggs in their bed sores (Kim, 1996). Surgeries were often performed on disabled children. Parents of those children gave consents for the surgeries in hopes of a cure or at least an improvement. In reality, the opposite was common. In many cases, their physical functions weakened because of the surgeries. For example, a child who was able to walk lost this ability as a result of four surgical operations while he was institutionalised (K. Onoue, interview, May 17, 2000). Disabled persons who experienced surgery as children or who witnessed the deterioration of their fellow residents following surgical procedures now suspect that they were used as guinea-pigs for the professional advancement of their doctors (Irube, 1990; Kim, 1996). A standard practice in these institutions was to give hysterectomies to women who menstruate, in order to make the staff’s work easier. Disabled women were simply not regarded as women. Whenever they menstruated, staff would complain and urge them to get a hysterectomy. Sometimes the staff would ignore a resident’s wishes and get permission for the surgery from her

The disability rights movement in Japan 205 parents. A woman had to be extremely assertive to avoid this surgery (K. Irube, interview, May 17, 2000). Sexual abuse towards female residents was also common. Onaka (1990) reports incidents of a male staff member fondling female residents’ breasts each time he bathed them. Verbal abuses by staff were also prevalent, such as ‘you are a burden to society’ and ‘your parents should have killed you’. Male and female residents were often bathed together by male staff. Toilet facilities for residents had no doors. Protests against such abuses were not an option. Residents needed daily assistance, and were thus forced to accept humiliation by the staff and their inferior position in the society. They cried quietly in their beds while tolerating these daily abuses. Beyond these obvious violations of human rights, living conditions in these institutions were very harsh. The daily schedules of the residents were often determined and modified for the convenience of the institution, rather than the residents. For example, in a residential institution for children, the time for getting up was 6:30 a.m. To be ready by that time, children were awakened as early as 4 a.m. to dress, assisted by a limited number of staff. In winter, there was no heating. Trembling from the cold and without assistance, some children took hours to change their clothes (Kim, 1996). In an institution for adults, staff were scheduled to prepare futons for sleeping at 4 p.m., and they often came as early as 1 p.m. to prepare the room for the residents to sleep. All window shades were closed in the early afternoon. Residents who had the courage to complain were black-listed. They were scolded not only by staff, but also by other residents who argued they had no right to complain since they could not do anything by themselves (Suzuki, 1995). In institutions for children, residents were ranked by the severity of their impairments. Children with less severe impairments were favoured by teachers and staff. They adopted the ‘elitism’ of those who considered themselves superior to residents with more severe impairments. The mission of these institutions was to train the residents to overcome their impairments and become as much like able-bodied persons as possible. Children whose impairments made it impossible for them to walk were pressured to try. Children with severe physical impairments were often neglected and left on their beds. Their beds became their whole world (K. Onoue, interview, May 17, 2000; Kim, 1996; Irube, 1990). Having visitors and going out with family members were special events for institutionalised children. It was, however, strictly limited by institutional rules. In many cases, they were allowed to visit their families only once or twice a year (typically New Years Day) and to have visitors as seldom as once or twice a month (Irube, 1990; Higuchi, 1998). Children who were abandoned in front of the institution or whose parents disappeared after they entered the institution had no one to visit during the holidays nor anyone to visit them. With no knowledge of the outside world, they remained confined there until they reached 18 years of age, when they were moved into an institution for adults. Residents who had visitors tended to be treated better by staff than those who

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had no visitors. Families would sneak in snacks (against institutional rules) for their hungry children who were forced to endure a restricted diet (Kim, 1996; Higuchi, 1998). In institutions for adults, the residents were treated as if they were children. Staff were patronising towards the residents. A handbook, published by a coalition of residential institutions for their staff, focused on functional limitations of disabled persons and saw them as people weak in character who needed constant supervision. The handbook stated that the staff should be teachers foremost and scold residents to make them behave (Onaka, 1990). Residents had to ask permission to do anything. Yokoyama (1998) recalls that, in the institution where he lived, no resident was given permission to go out during the winter. The official reason of the denial was to protect the residents from getting cold outside. Newspapers for the residents were censored. Advertisements for housing were cut out so the residents would not dream of leaving the institution. Onaka (1990) describes an incident that can be perceived as intentional institutional neglect: a doctor instructed an institution to allow a disabled resident to try an electric wheelchair so that he could move around without the assistance of volunteers. It took 2 years and 6 months for the institution to allow him the trial. Then, after the trial in which the resident proved that he could control the electric wheelchair, it took a further 8 years for the resident to receive one.

The emergence of the disability rights movement The disability rights movement in Japan was born along side the other social movements of its time, among them the anti-Vietnam war, students, environmental, feminist’ and Buraku liberation movements of the 1960s and 1970s. (Buraku people are Japanese citizens whose ancestors belonged to the lowest caste during the Samurai Era, 150 years ago. They are still discriminated against today.) Disabled people began to raise their voices in protest against discriminatory treatment. One of those incidents, which happened in Fuchu Ryoiku Centre, is described below. This section also introduces the Aoi Shiba, a group of people with cerebral palsy that had a great influence on the disability rights movement in Japan in the 1970–1980s. They criticised the ‘able-bodied culture’, and changed the perception of disabilities among disabled people and among the greater population as well. Fuchu Ryoiku Centre battle The Fuchu Ryoiku Centre was one of those residential institutions described in the previous section. Opened in 1968, it was considered a model institution under the welfare policies of the left-leaning Tokyo governor Taturo Minobe. In reality, it was not an exception regarding the maltreatment of its residents. For disabled persons to be accepted into the Centre, their parents had to sign a

The disability rights movement in Japan 207 waiver eliminating the requirement of their consent for any surgical procedures performed on their adult children. This enabled the doctors of the Centre to perform any surgery, including lobotomy and autopsy, without parent notification. As a result, residents were used as guinea-pigs by the doctors for medical research (Kyukyoku, 1998). During the induction, disabled persons were stripped naked and photographed. Residents wore pyjamas 24 hours a day and lived in bedrooms shared by many. There was a notice in the building stating, ‘Do not feed except the meals provided by the Centre’. The residents were not allowed to make any contact with persons outside the institution except for once-a-month visitations. They were allowed to go out only once every 3 months, when their parents submitted a request in writing. Verbal abuses by staff were common, especially when the residents received toilet assistance. ‘One who can’t wipe his own ass has no right to be concerned about his hairstyle. Cut your damn hair!’ (Wakabayashi, 1986). After having their requests for better treatment repeatedly ignored, some Fuchu Ryoiku residents began a hunger strike in 1970 to protest their chronic maltreatment at the centre. Although the hunger strike did receive some media attention, the Centre made no policy changes. In 1972, triggered by the lay-offs of sympathetic staff, the residents union called for sit-ins in front of the Tokyo municipal building. This time they gained strong support from labour and student activists who helped them set up and maintain the sit-ins. The sit-ins lasted for more than a year. It forced the government to look into the living situation of residential institutions. The incident also led the disabled participants to think about life alternatives. They had been given only two options in their lives: living with their parents or in an institution. They began to consider the possibility of living independently in the community (Wakabayashi, 1986; Kyukyoku, 1998). Aoi Shiba The origin of Aoi Shiba is traced to a school established in 1932 and a friendship group started in 1957 by its graduates. In 1932, the first school for the physically disabled—Komyo Gakko—was opened in Tokyo by efforts of a few motivated educators who were influenced by the democracy movement in the early twentieth century. This was the only school where children with cerebral palsy could get an education in Japan. The school accepted the children from affluent families. Those students received an education in literature, art and music. Graduates of the school reached adulthood around the end of WWII and in 1947 started a literature club known as Sinonome. They printed a journal to publish their essays, poems and haikus. While the majority of people with cerebral palsy in Japan remained hidden from view, confined in their parents’ homes, those fortunate elite braved the curious gazes to enter occupational rehabilitation institutions. Some even entered colleges. However, once they completed their training or education they learned the stark reality that there

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was no place for them in society. Even organisations for disabled persons did not welcome persons with cerebral palsy (Wakabayashi, 1986). In 1957, some of these educated elite established a group called Aoi Shiba for people with cerebral palsy. At first the activities of the group were limited to recreation and socialisation, activities which other organisations of disabled persons had been providing to their respective members. However, the group began to develop a deeper awareness of social issues involving those with cerebral palsy. In 1961, they held the first meeting with the Japanese government’s Ministry of Health and Welfare. They requested 12 policy changes, including the increase of Welfare Pension for People with Disabilities. Their demands included items that current disability rights advocates would strongly oppose, such as the establishment of permanent residential facilities (Wakabayashi, 1986). Although some of their demands are viewed with contempt from our current perspective, it should be noted that this meeting held with the government of Japan by a group of people with cerebral palsy—a group discriminated against even by people with other disabilities—was a historically important achievement. As Aoi Shiba grew, it was joined by two other groups of persons with cerebral palsy. One, a small residential institution called Kurume-en, was created by a progressive welfare worker who encouraged the residents to express their opinions and exercise their freedom for the first time in their lives. Another, the Maharaba Colony for persons with cerebral palsy, was a commune led by a leftleaning Buddhist monk who helped the residents realise that they had to free themselves from the social norms of the ableist society (Wakabayashi, 1986). These two groups presented stronger social awareness than Aoi Shiba’s founding elite who wanted less conflicts with the mainstream society. Aoi Shiba’s leadership changed hands as it absorbed these new groups and so did its direction—marked by its response to a child killing incident in Kanagawa prefecture. In 1970, a mother killed her 2-year-old disabled child. This led to a petition drive by an association of parents of disabled children to halt the criminal prosecution of the mother. Such petitions were not new. Usually petitions blamed the limited number of institutions for the disabled, and citizens felt great sympathy for the parents. Influenced by this public outcry, the District Attorney’s office was reconsidering prosecution. However, this time Aoi Shiba publicly criticised the parents’ movement. They accused the parents of being representatives of the ableist society which nurtured a eugenic ideology that labelled disability as a fate worse than death. They successfully counterpetitioned the court to judge the mother according to the law, and she was prosecuted (Wakabayashi, 1986; Tateiwa, 1990; Nagase, 1995). Disabled persons had been taught to be childlike, lovable, always smiling, appreciative and apologetic towards able-bodied persons. They had been taught self-pity and dependence at home, in institutions and in society. Aoi Shiba’s new leadership helped them realise that the ableist society judges them as ‘an existence which should not exist’. It encouraged them to aggressively represent themselves for self-protection (Nagase, 1995). They also implored people with

The disability rights movement in Japan 209 disabilities to refuse the ableist society’s ‘love and justice’, which they recognised as pity and oppression. Finally, they stated that they would not solve problems. They understood from their personal experiences that easy solutions to problems would lead to dangerous compromises. They believed that exposing problems was their mission (Okahara, 1990; Tateiwa, 1990). Aoi Shiba sent organisers to establish branches in many areas in Japan. They continued to raise their voices in protest against ableism. They, among others, demonstrated in sitins to stop inaccessible buses, worked against the compulsory segregation of disabled children in separated schools and organised protests against the Eugenics Protection Law, which legalised abortion when the foetus had disabilities (Wakabayashi, 1986; Yamamoto, 1995; Yokoyama, 1998). Aoi Shiba was the leading force to establish a coalition of disability rights organisations, Zenshoren, in 1976. Zenshoren, a progressive coalition of people with diverse disabilities, also organised various protests against ableist policies (Wakabayashi, 1986). Challenges in the disability rights movement As with other political organisations, Aoi Shiba faced internal conflicts. One of these was related to the involvement of non-disabled persons in the movement. Toyota (1988) recalls that some of those able-bodied supporters were left-wing radicals who had goals beyond the liberation of disabled people. They wanted to exploit the energy of this oppressed group to help their political factions fight against the social system. They tried to take control over the activities of disabled persons and organizations. To establish ‘disability authority’ some disabled persons declared that non-disabled persons should be just ‘hands and legs’— meaning the non-disabled should attend to the needs of disabled persons, but not express their opinions. They felt the non-disabled should acknowledge the parts they play in the ableist society and should work as ‘hands and legs’ for free as redemption for their role as oppressors (Toyota, 1988). Having been eliminated from the society and never considered employable, some disabled persons found it difficult to comprehend that their able-bodied supporters had to earn a living. Some labelled working for money as ‘impure’. The idea of paying for personal attendants did not cross the minds of early activists in the movement. In some extreme cases, volunteer attendants who were a few minutes late for their appointments received strong verbal rebukes and were condemned as oppressors. Those who wanted to quit their volunteer positions for personal reasons were also berated. This desire to establish disability authority, borne of their experiences of being abused by the ableist society, caused angry outbursts towards non-disabled persons around them. Many non-disabled supporters refused to accept subjugation and the expectation that they provide free labour, but have no voice in the movement (Kyukyoku, 1998). Another problem they encountered was ranking oppressions. This was during a time when many oppressed groups raised their voices to be heard by the greater Japanese society. Some of these included Koreans and Buraku

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people. There was a ranking of oppressions in which sexism was labelled lightest. There was a sense that ableism and Buraku-discrimination were critically important, while sexism was not. When a mother killed her disabled child, the disability movement saw mothers as enemies. ‘Mothers, do not kill!’ was their slogan, not ‘Parents, do not kill!’ The disability rights movement failed to acknowledge the intersection of sexism and ableism in this incident. When women could validate their social status only as mothers who bore ‘healthy’ children for their husbands’ families, those who bore disabled children were condemned to live in shame with the children. While the murder of a child should doubtless be denounced, so should sexism (Yonezu, 1998). By ignoring other oppressions in society, the movement became an uncomfortable place for many. Aoi Shiba experienced inner organisational conflicts because of differences in opinions on many issues. Many left the organisation with injured hearts. Yet, with all of its weaknesses, Aoi Shiba should be remembered as a radiant star in Japan’s modern disability rights movement. Those who stayed, those who left for various reasons and those disabled persons who did not join the organisation, but learned the disability pride because of its existence, all acknowledge that Aoi Shiba helped change their lives forever. Many of the leaders of the current disability rights movement had their consciousness raised by the Aoi Shiba movement and have continued to be active as a result.

Living in the community As consciousness was raised in the 1970s within the disability rights movement, some disabled activists left the confinement of their institutions or their parents’ homes and started new lives in the community supported by volunteer attendants. They were determined not to go back to their former situations even though their lives were at risk (K. Onoue, interview, May 17, 2000). Managing their own lives 24 hours a day with volunteer attendants presented enormous challenges, including recruiting volunteers, keeping them and arranging their time schedules. Many found themselves constantly on the phone trying to get attendants. Soon they were competing for the same volunteers with other disabled persons (Yokoyama, 1998). Their personal needs for daily living in the community led them into negotiations with their local governments in many regions. They demanded that the government create or expand programmes, such as home helper services and provide funds to allow disabled citizens to directly hire personal attendants (Kyukyoku, 1998). In the 1980s, disability rights organisations put more energy into negotiating with regional governments to improve the daily lives of disabled persons, rather than leading protests in response to discriminatory incidents. During the 1970s, their negotiations with governments tended to be protest-orientated. At that time, getting patronising and insincere government personnel merely to listen to what disabled persons were saying was as important as the content of their demands. By the 1980s, government agencies were getting used to the presence

The disability rights movement in Japan 211 of disabled people at the negotiation table and disability rights organisations began making requests based on research findings. Their requests expanded beyond the immediate personal needs of activists to include benefits for ‘ordinary’ disabled persons (K. Onoue, interview, May 17, 2000). The 1980s was a time when people started to consider independent living within the community as an alternative to institutional living when their parents became old or their care-giving siblings fell ill. For example, in 1980 the Osaka Aoi Shiba chapter surveyed disabled persons about their living conditions. The survey consisted of 100 questions about daily life, employment, education and medical necessities. The purpose was to study the situation of those disabled persons living with their parents or living in institutions. The data they gathered on about 200 respondents revealed some situations of serious concern. For example, it was typical that a disabled person did nothing, but sit in front of TV all day alone except when going out with a volunteer once a month. It was also common that a disabled person bathed only once a month because the parents were getting too old to give bathing assistance. Having presented their findings to the Osaka City government, Osaka Aoi Shiba then negotiated with the City for several years to establish a personal attendant programme, which would satisfy the needs of disabled persons. They recommended same sex ‘home helpers’ who could not only do house keeping tasks, but also personal care assistance such as bathing and toilet support. They demanded the right to select their helpers, as well as the right to dismiss them. In 1986, the Personal Attendants Program for Physically Disabled Persons was started in Osaka City. At first, the programme provided assistance for a maximum of only 12 hours a month per person, and the hourly wage for the helper was 650 yen. However, the programme progressed and by 1999 the city was providing 153 hours of assistance a month per person at an hourly wage of 1400 yen (Onoue, 2000). In some areas, disability rights organisations started their own personal attendants programmes. The members of these organisations knew the difficulties in obtaining high quality attendants, as well as an adequate supply. Helpers from municipal governments tended to be inflexible regarding what they would do. Also, disabled persons had to wait for the helper to arrive at their home. They could not change their schedule and go out when they wanted. Some helpers were patronising and domineering. These pioneers of independent living learned from experience how to educate and handle their helpers. The personal attendants programmes hired and educated attendants and co-ordinated them with their clients for a fee. By becoming service providers, the disability rights organisations helped expand the opportunities of independent living to disabled persons who wanted to leave their institutions or parents’ homes, but did not know how. They bore strong criticism from some of their peers from the 1970s’ movement who still believed that the assistance should be ‘pure’—without monetary compensation. However, in spite of some dissension, the programmes developed in response to the demand within communities. Disabled people continued their negotiations with local governments to increase funding for personal attendants (Kyukyoku, 1998; Yokoyama, 1998).

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Besides the issues of personal attendants, disability rights organizations were active on many fronts in the 1980s. For example, in the Osaka area they started some ‘workshops for the disabled’, supported by grants from local governments. These grants were established originally by parents’ movements in the 1960s. These new workshops included a soap shop, bakeries and print shops (Irube, 1990). The major difference between these workshops and traditional ones was that these were founded and managed by disabled persons. The workshops were located in the community and disabled workers participated in planning, production, sales and management. Traditional workshops were usually established and controlled by the non-disabled—often the parents of the disabled workers. In those ‘sheltered workshops’, disabled persons were assigned to menial tasks and had little or no voice in organizational decision making (K. Onoue, interview, May 17, 2000). Disability rights organisations expanded the definition of ‘workshops’ as well. Some groups received the workshop grant to establish offices where people receive information, do networking, plan for negotiations, and other activities. Shared homes with personal attendants were opened and supported by the grant, as well as facilities for experimental independent living where disabled persons could try out independent living in the community assisted by ‘total strangers’ for the first time in their lives (M. Kawakami, interview, May 16, 2000). Beyond their community activism, some disabled women fell in love with their male attendants, got married, became mothers, and raised families (Irube, 1990; M. Saito, interview, May 19, 2000). Those were women who once would have been forced to get hysterectomies, while living without any measure of independence in institutions. When disability rights advocates decided they needed their voices heard in a city assembly, a mother who required 24-hour attendant care ran for the position and won in 1990. When she first appeared at city hall, city employees talked to her attendant even though she was the city assembly person. She is now serving her third term and city employees talk directly to her (K. Irube, interview, May 17, 2000).

Advocates from the United States The 1981 International Year of Disabled Persons prompted visits by advocates from the United States, including the pioneers of the US disability rights and independent living movements—Ed Roberts and Judy Heumann. Roberts, a quadriplegic and respirator user, entered the University of California-Berkeley in 1962, notwithstanding the reluctance of university officials and a complete lack of accommodations. Encouraged by his action, a dozen other students with severe disabilities enrolled at the university within the next few years. They formed a group known as the Rolling Quads, and worked to make the campus and surrounding community accessible. Roberts also founded the first center for independent living in 1972 (Pelka, 1997, pp. 266–267; Shapiro, 1993, pp. 41–73). Heumann, who won a disability-based discrimination lawsuit in New

The disability rights movement in Japan 213 York, became the first wheelchair-using teacher in New York City’s public school system in 1970. She founded Disabled In Action, a political action group, and organised demonstrations and sit-ins protesting President Richard Nixon’s veto of the Rehabilitation Act of 1972. She joined Roberts at the Centre for Independent Living in Berkeley in 1973. In 1977, disability rights activists occupied the federal building in San Francisco for 25 days demanding the Carter administration implement Section 504 of the Rehabilitation Act of 1973. The action nurtured a sense of pride and solidarity in the disability community (Pelka, 1997, pp. 152–154; Shapiro, 1993, pp. 55–73). As the USA movement broadened its perview, disability rights activists challenged institutionalised oppression, segregation and the lack of basic rights such as physical accessibility, equal employment, housing and transportation. By the time of the visit to Japan in 1981, the USA disability rights movement had established several centres for independent living in USA cities. The centres, administered by disabled people, provided advocacy work, as well as social services to support disabled people living in the community (Lifchez, 1979; Levy, 1988; DeJong et al., 1992). At that time, Ed Roberts was the director of the California State Department of Vocational Rehabilitation, and Judy Heumann was the deputy director of the Centre for Independent Living in Berkeley. They and other US advocates attended conferences in many Japanese cities and impressed participants with disabilities tremendously with their descriptions of the centres for independent living, as well as with their credentials as important officials in government and community agencies. Among the Japanese in attendance were those who had kept their distance from the disability rights movement of the 1970s. Some had felt uncomfortable with the aggressive strategies Aoi Shiba took them. Others were still children then, living in institutions. They grew up listening to teachers who warned that Aoi Shiba was a dangerous and extremist organisation and forbade them from approaching the group. Motivated by the stories of these US advocates, some Japanese participants took advantage of a scholarship programme offered by a foundation that enabled them to go to the United States and study at the centres for independent living (Higuchi, 1998). Thus, a new breed of advocates was trained in the United States in 1980s.

Establishing centres for independent living in Japan In 1986, the first centre for independent living modelled on those in the USA was opened in a suburb of Tokyo, staffed mainly by those trained in the United States. Different from the protest-orientated organisations in 1970s, the new centre for independent living established a business office and offered the following fee-based services: an independent living programme, peer counselling, and a personal attendant programme. The independent living programme equipped their participants with the social skills, behaviour and attitudes they would need to live within the community, and it offered classes to raise their self-confidence, motivation for life and self-esteem. Although

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established segregated schools for the disabled offered physical rehabilitation training to their students, they ignored their crucial need for the social skills and self-confidence required to live in the community. Thus, the independent living programme was essential for disabled persons who were inspired to live independently. Peer counselling sessions were developed by combining information of the co-counselling, peer-counselling and therapy methods and practices in other countries with knowledge about uniquely Japanese situations. The personal attendant programme hired and trained attendants, and co-ordinated them with clients. Members of the centre also provided the support to found more centres for independent living in other areas in Japan (Nakanishi, 1996; Higuchi, 1998; Tsutsumi, 1998; H. Kondo, interview, May 26, 2000; S. Nakanishi, interview, June 1, 2000). In 1991 the Japan Council on Independent Living Centres (JIL), an association of centres for independent living, was established to coordinate the independent-living movement. To join JIL, organisations must fulfill certain requirements. First, both the president and the director of the organisation, as well as a majority of its board of directors must be disabled persons. Secondly, the organisation must provide a ‘packaged service’ consisting of at least two out of the following four programmes: peer counselling, a personal attendants programme, a housing service and an independent living programme. Finally, they must admit all disabled clients, regardless of the type or severity of their disabilities (JIL, 2000a). Advocacy organisations from the 1970s that had already been providing various services to the community, as well as the more recently founded centres for independent living joined JIL. Activists trained in the protest movements of the 1970s along with new advocates educated in the USA joined forces to establish nationwide consumer-directed personal-attendant programmes. The membership started with 10 centres in 1991. By the spring of 2000, there were 90 centres for independent living in Japan associated with JIL. JIL provides assistance for the creation of new centres, promotes cooperation among existing centres, and strives to gain public recognition for their work in order to receive government contracts and private foundation grants to help maintain and advance their activities. It also educates the general public about human rights violations of disabled persons and advocates for the eradication of all such violations. While providing services, the centres for independent living have, both jointly and separately, continued negotiations with governmental agencies to increase official support for attendant services. As a result, one quarter of all Japanese citizens now live in regions where disabled persons can receive more than 8 hours of attendant services daily, provided by government agencies. In Matsuyama City, Takamatsu City, and 17 regions in Tokyo, disabled persons can receive round-the-clock attendant services covered by government agencies (SSK, 2000).

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The disability rights movement: into the future In Japan’s traditional welfare society, disabled people were assumed to be taken care of physically and financially by their parents and siblings even after reaching adulthood. Life choices for the majority of persons with severe impairments were limited to either living with parents or living in institutions for their entire lives. In the 1970s, the modern disability rights movement was born as disabled persons protested against human rights violations in residential institutions, segregated schools and Japanese society. Eventually, some of these pioneers left their institutions or their parents’ homes to live in the community, determined never to return. They had to recruit volunteer attendants themselves and, when that failed, they faced starvation, sitting in their own excrement and other reprehensible hardships. Those courageous people who overcame these challenges became even more motivated and determined activists. Their continuous negotiations with local governments made it possible for disabled persons to receive funds and attendant services, enabling them to survive in the community. By the 1990s, people with disabilities no longer had to be activists to live independently (K. Onoue, interview, May 17, 2000). Advocates from the United States introduced the philosophy and practices of their centres for independent living, inspiring disabled persons from Japan to train in US centres and return to open Japan’s first centre for independent living. More centres were created and in 1991 the Japan Council on Independent Living Centres was established to co-ordinate the independent living movement. Both national and regional governments have gradually come to accept the idea of consumer-directed community-based programmes. In 1996, the Ministry of Health and Welfare established the City-Town-Village Living Support Program for Disabled Persons and contracted out its services to three centres for independent living in the Tokyo area. In 2000, Machida City also contracted out its Home Helper Program for Disabled Persons to a centre for independent living in the city (H. Kondo, interview, May 26, 2000). Further more, the Japanese government plans to implement the National Attendant Insurance Program for Disabled Persons in 2005, which will contract out its services to community-based agencies. This presents the centres for independent living in Japan with an opportunity to show their competence as providers of community-based services and to become a national network of services contractors. Such an accomplishment would establish the concept of consumer-controlled services in every aspect of the service delivery system. In the new millennium, besides establishing the public standing of the centres for independent living as major providers of community services, the disability rights movement in Japan must continue its advocacy work on many fronts. Issues of importance include: •

creating accessible communities including accessible transportation systems (H. Kondo, interview, May 26, 2000; JIL, 2000b);

216 • •

• •

R. Hayashi and M. Okuhira outreach to disabled persons living in institutions (Kishida, 2000; S. Nakanishi, interview, June 1, 2000); greater involvement in the Ombudsperson system, now dominated by ablebodied professionals, to protect the human rights of institutionalised persons (JIL, 2000b); expanding independent living services to persons with psychiatric or intellectual disabilities (Nakanishi, 1996); providing their knowledge and expertise to movements outside of Japan.

The disability rights movement in Japan has begun supporting independentliving movements in other Asian countries. Japanese advocates visit Asian countries to introduce their citizens to the philosophy and practices of the centres for independent living. Disabled persons from those countries are now being trained in Japan’s centers for independent living. Japanese advocates hope that other Asian countries will be able to avoid the creation of segregated institutions which, once created, will be hard to abolish (S. Nakanishi, interview, June 1, 2000). The disability rights movement in Japan has come a long way, and there remains much to accomplish.

Acknowledgements This research was supported by a grant from the Japan Foundation.

References DeJong, G., Batavia, A.I. & McKnew, L.B. (1992) The independent living model of personal assistance in long-term-care policy, Generations, 16, pp. 89–95. Higuchi, K. (1998) Enjoy Jiritu Seikatu [Enjoy Independent Living] (Tokyo, Gendai Shokan). Irube, M. (1990) Harikiri Oyabunno Kurumaisu Hanjyouki [The Activities of an Energetic Boss in Wheelchair] (Toyonaka, Aznokai). JIL (2000a) Japan Council on Independent Living Centers [On-line]. See http://www.d1.dion.ne. jp/~jil JIL (2000b) Shogaisyato Kenri Yogo [Disabled Persons and the Protection of their Rights] (Tokyo, Japan Council on Independent Living Centres). Kim, M. (1996) Ikirukotono Hajimari [Starting Living] (Tokyo, Chikuma Shobo). Kyukyoku, O. (1998) Kaijosya towa nanika [What are attendants?] Gendai Sisou [Modern Thinking], 26(2), pp. 176–183. Levy, C.W. (1988) A People’s History of the Independent Living Movement (Lawrence, KS, University of Kansas). Lifchez, R. (1979) Design for Independent Living (California, University of California Press). Ministry of Health and Welfare (2000) Social Security Policies in Japan (Tokyo, Japanese Ministry of Health and Welfare) [On-line]. See http://www.mhw.go.jp/english/ ssp_in_j/services Nakanishi, M. (1996) Jiritu Seikatu Center No Tanjo [The Birth of the Center for Independent Living] (Tokyo, Human Care).

The disability rights movement in Japan 217 Nagase, O. (1995) Difference, Equality and Disabled People: disability rights and disability culture, Master’s thesis (Hague, Institute of Social Studies). Okahara, M. (1990) Seidotositeno aijou [Love as a social structure], in: J. Asaka, M. Okahara, F. Onaka & S. Tateiwa (Eds) Sei no Giho (Tokyo, Fujiwara Shoten). Onaka, F. (1990) Sisetuno sotode ikiru [Living outside of institutions], in: J. Asaka, M. Okahara, F. Onaka & S. Tateiwa (Eds) Sei no Giho (Tokyo, Fujiwara Shoten). Onoue, K. (2000) Osaka-si zensin syogaisya kaigonin haken jigyo hassokuno keika [The process of establishing the home attendants program for disabled persons in Osaka City], SSK KHJ, 1517, pp. 48–49. Pelka, F. (1997) The Disability Rights Movement (California, ABC-CLIO). Shapiro, J.P. (1993) No Pity: people with disabilities forging a new civil rights movement (New York, Times Books). SSK (2000) Zenkoku Kakuchino Jyudo Zensinsei Syogaisyano Sensinkaigoseido Siryo [Resource Manual of Personal Attendant Programs for Physically Disabled Persons in Japan]. (Tokyo, Japan Association of Personal Attendants Programs). Suzuki, T. (1995) Are you ready?, in: M. Kishida & M. Kim (Eds) Watashiwa Onna [I Am a Woman] (Kobe, Choseisya). Tateiwa, S. (1990) Hayaku yukkuri: jiritsu seikatsu undo no seisei to tenkai [Fast and slow: the establishment and activities of the independent living movement], in: J. Asaka, M. Okahara, F. Onaka & S. Tateiwa, (Eds) Sei no Giho (Tokyo, Fujiwara Shoten). Toyota, M. (1998) Tojisya gensoron [Illusion of the primary party], Gendai Sisou [Modern Thinking], 26(2), pp. 100–113. Tsutsumi, A. (1998) Peer counseling, Gendai Sisou [Modern Thinking], 26(2), pp. 92–99. Wakabayashi, K. (1986) Kiseki: Aoi Shiba no Kai [The Way: Aoi Shiba Association] (Tokyo, self publication). Yamamoto, K. (1995) Nakuso yuseihogoho dataizai kaeyo boshihoken [Abolish the eugenics law that penalizes abortions—reform the welfare of mothers and children law], Fukushi Rodo [Social Work], 66, pp. 123–129. Yokoyama, T. (1998) Kaijo wo dou ichizukerunoka [How do we define personal assistance?] Gendai Sisou [Modern Thinking], 26(2), pp. 84–90. Yonezu, T. (1998) Omosa kurabeya atomawashi karawa nanimo umarenai [Nothing emerges from comparing the severity of oppressions and labeling one as less severe], Gendai Sisou [Modern Thinking], 26(2), pp. 224–242.

Profiles of interviewees Kishida, M. President, Center for Independent Living ‘Maydo’ (May 17, 2000). Shaito, M. President, Center for Independent Living Support ‘Takatsuki’ (May 19, 2000). Kawakami, M. Director, Center for Independent Living ‘Nabi’ (May 16, 2000). Onoue, K. President, Center for Independent Living ‘Nabi’ (May 17, 2000). Irube, K. Toyonaka City Assemblywoman (May 17, 2000). Kondo, H. Center for Independent Living ‘Machida Human Network’ (May 26, 2000). Nakanishi, S. President, Center for Independent Living ‘Human Care’ (June 1, 2000).

14 What disability civil rights cannot do Employment and political economy Marta Russell 16022 Moorpark St. #301, Encino, USA

Abstract The Americans with Disabilities Act is both a liberal civil rights bill and a labour economics bill meant to increase the employment of disabled persons. It identifies the source of unemployment in discriminatory attitudes of employers and physical barriers in the work environment, and promotes inclusion through the establishment of regulations that are intended to create ‘equal opportunity’ in the labour market. Such liberal reforms primarily focus on ‘irrational’ discriminatory attitudes. Operating within an individualist framework, civil rights have not given sufficient attention to structural barriers, which ‘rational’ business practices, the economic system and class power relationships erect. This paper will both micro- and macro-economic realities of US capitalism, which directly impede disabled peoples’ employment and perpetuate a disabling society. The failure of rights legislation to increase disabled people’s employment exposes the contradictions of promoting equal opportunity in a class-based (unequal) society.

Introduction Given that a decade has passed since the passage of the ADA and 5 years since the enactment of the British Disability Discrimination Act, it seems a fitting time at which to examine the civil rights employment impasse against the larger political economy backdrop. Since my expertise lies with US capitalism, this paper will detail structural problems underlying disability employment issues in the US only. In the US it is now evident that disability civil rights do not equate with a lowering of the disabled unemployment rate. Despite a growing economy—the best possible scenario for increasing the employment of disabled persons—and a low aggregate national official unemployment rate (4–5%) presiding over much of the 9 years the Americans with Disabilities Act (ADA) employment provisions have been in effect, the unemployment rate for working-age disabled population has barely budged from its chronic state—hovering at 70%.1 Over two-thirds of working-age disabled adults say they would prefer to work (Harris et al, 1998), yet US Census data suggests that in 2000 only 30.5% of

What disability civil rights cannot do 219 those with a work disability between ages 16 and 64 were in the labour force and only 27.6% were employed, while 82.1% of non-disabled persons in this age group were either employed (78.6%) or actively seeking work for pay. According to a recent study, while many Americans reaped higher incomes from an economy that created a record number of new jobs during 7 years of continuous economic growth (1992–1998), the employment rates of disabled men and women continued to fall so that by 1998, they were still below the 1992 level (Burkhauser et al., 2001). A Boston Globe headline news story ‘Access and Closed Doors: Despite Federal Act, Number of Disabled with No Job is Rising’ noted that Pollster Louis Harris & Associates found that 71% of people with disabilities who are of working age were unemployed in 1998, 5 percentage points higher than in 1986, when the study was first conducted (Lewis, 1999). What does the empirical data show has happened to employment during the economic expansion of the 1990s with full implementation of the ADA’s employment provisions? The Congressional Research Service found that the employed share of 18–64-year-olds with disabilities who reported they were able to work grew from 70.2% in 1992 to 72.3% in 1996. Over the same period, the proportion of the non-disabled working-age population who were employed rose from 78.5% to 80.5%. The job prospects for the disabled population improved to the same degree as the non-disabled population, meaning the gap in employment rates did not narrow. Study author Linda Levine concludes ‘this suggests that the ADA did not provide an extra boost to the employment situation of working-age adults with disabilities through the mid-1990s’ (Levine, 2000, p. 12). The Disability Rights Movement (DRM) in the US has largely conceptualised disability as a minority group, which is disadvantaged and denied majority rights status (Hahn, 1985; Zola, 1994). Identifying the source of disabled persons unemployment in discriminatory attitudes of employers and physical barriers in the work environment, the DRM has sought to alter the historical exclusion of disabled persons from the workforce through the establishment of individual legal rights and remedy under the liberal theory of ‘equal opportunity’ to employment—which essentially means equal access to a job not available to all. The Americans with Disabilities Act of 1990 (ADA)2 is both a civil rights bill intended to end employer discrimination and a labour economics bill, intended to increase the relative wages and employment of disabled persons. The Act states ‘[T]he Nation’s proper goals regarding individuals with disabilities are to assure . . . economic self-sufficiency[.] Discrimination . . . costs the United States billions of dollars in unnecessary expenses resulting from dependency and nonproductivity.’3 The ADA bans discrimination on the basis of disability through the establishment of constitutional law and regulations which are geared to ‘level the playing field’ for disabled job applicants and to induce employers to accommodate impairments on the job. It gives disabled persons redress against work-based disability discrimination in the courts and through the Equal Employment Opportunity Commission (EEOC).

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There is consensus, however, amongst scholars and analysts that the US courts have failed to enforce the ADA as civil rights proponents intended and that EEOC enforcement has fallen short. A study by the American Bar Association’s Commission on Mental and Physical Disability Law, for instance, shows that disabled workers bringing discrimination suits are unlikely to succeed in court (Mental and Physical Disability Law Reporter, 1998). Of the more than 1200 cases filed under the employment provisions of the ADA 1992–1998, disabled employees prevailed only 8% of the time. By 2000 employers prevailed 95% of the time. Another study by Ohio State University Law Professor Ruth Colker shows similar results, finding that employers successfully defend more than 93% of reported ADA employment discrimination cases at the trial court level and succeed in 84% of cases appealed (Colker, 1999, p. 99). So far, disabled plaintiffs have faced great difficulty prevailing in court on key issues. The US Commission on Civil Rights notes that many disability experts ascribe the problem in judicial and administrative confusion over interpretation of the employment statutes (US Commission on Civil Rights, 1998, p. 5). Professor Matthew Diller explains that legitimate plaintiff cases are being thwarted often for nonsensical reasons (such as medical conditions are not granted the legal standing of ‘disability’ under the law), and that courts are resistant to both comprehending and accepting equal rights and reasonable accommodation as applied to disablement (Diller, 2000, p. 23). Arlene Mayerson, an attorney with the Disability Rights Education and Defense Fund, characterises ADA case law as ‘hyper technical, often illogical interpretations of the ADA’, which have generated a ‘disturbing trend’ of court precedents (Mayerson, 1997, pp. 587, 612). Robert Burgdorf, Jr, one of the drafters of the ADA, concludes that ‘legal analysis has proceeded quite a way down the wrong road’ (Burgdorf, 1997, p. 409). Burgdorf points to a judicial tendency to view ADA plaintiffs as seeking special benefits and treatment instead of equal rights (Burgdorf, 1997, p. 413). Bonnie Tucker theorises that there is an inherent flaw in the civil rights paradigm when it comes to equal rights for disabled persons. She suggests that judges may be viewing the provision of reasonable accommodation as an ‘extra’ requirement, an expansion of traditional civil rights concept and, consequently, rejecting the legitimacy of disability rights under equal rights principles (Tucker, 2001). To explain such outcomes, I have sought to examine the relationship between politics, policy and economics—particularly with regard to the interests of business. Disability scholars such as Victor Finkelstein, Michael Oliver, Colin Barnes, Paul Abberley, Nirmala Erevelles, Lennard Davis, Brendan Gleeson and others have advanced the position that the capitalist system— particularly the commodification of labour—is a crucial contributing factor to the lack of economic advancement of disabled people. Going back to Marx’s theory of absolute impoverishment, Ernest Mandel clarifies Marx’s observation that capitalism ‘throws out of the production process’ a section of the proletariat: unemployed, old people, disabled persons, the sick, etc. (Mandel, 1962, p. 151). Marx calls these groups a part of the poorest stratum ‘bearing the

What disability civil rights cannot do 221 stigmata of wage labor’. As Mandel says, ‘this analysis retains its full value, even under the “welfare” capitalism of today’ (Mandel, 1962, p. 151). While others have made links between capitalism and disablement my purpose has been to expose how modern capitalism perpetuates this substratum in the face of disabled peoples’ struggle for their place the US labour force. In this vein I have sought to expose systemic economic discrimination against disabled workers in a capitalist economy that the ADA cannot address or remedy and will return to this matter below. I have also argued that ADA court failures have been prompted by capitalist opposition made more powerful in a neoliberal era, where conservative forces have politically achieved a more laissez faire, deregulated economy, successfully targeting regulationships they view as interfering with business for weakening or repeal (Russell 1998; pp. 109–111; 2000, p. 341). The philosophical momentum for social justice that spurred the Civil Rights Act of 1964, and subsequent progressive court decisions in the 1960s and 1970s was well into decline by the 1990s when the ADA was passed. For example, in the era following passage of civil rights laws in 1957, 1960, 1964 and 1968, the Republicans made dramatic inroads into Democratic victories that forged the civil rights movement, established the Office of Economic Opportunity and initiated the War on Poverty during the Great Society. Presidents Reagan and Bush dismantled the entire Community Services Administration, responsible for driving much of the 1960s social change agenda by advancing human services, occupational safety, consumer protection and environmental protection laws. On the way out were civil rights and economic entitlements, replaced by a conservative thrust to reduce ‘big bad government’. The dominant agenda of the late 1970s and 1980s was bolstered by corporate goals, which emphasised globalisation and political dominance of government (McMahan, 1985). Increased international capital mobility and liberalised international trade have resulted in the transfer of more power to management, at the expense of labour (Parenti, 1995, pp. 99–119, 271). Conservative forces targeted protective regulations for repeal or rollback that, in their view, interfered with business (Wolman & Colamosca, 1997; Mishel et al., 1999). Economic policy in the post-1979 period moved decisively toward a more laissez faire, deregulated approach. Industries like transportation and communications have been largely deregulated. Social protections, including safety, health and environmental regulations, the minimum wage, government transfer payments (welfare) and the unemployment insurance system all have been weakened. The ADA was no exception. It was watered down substantially to achieve Congressional consensus and Bush’s presidential approval (Pheiffer, 2000, p. 43). The most recent evidence that these forces remain intact: the Supreme Court’s weakening of the ADA in Garrett, Sutton, Murphy and Albertson’s disability employment decisions; the striking down of the Age Discrimination Act in Kimel v. Florida; and the invalidation of the Violence Against Women’s Act in United States v. Morrison. After years of dedicated civil rights activism in the 1950–60s the American

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civil rights leader Dr Martin Luther King, Jr outgrew the liberal view that economic justice for blacks was possible through the enactment of civil rights laws geared to make race-based employment discrimination against the law. King realised that civil rights (even when coupled with economic expansion) could not solve the mass unemployment of black Americans. At the 1967 Southern Christian Leadership Conference convention Dr King implored the movement to: address itself to the question of restructuring the whole of American society. There are 40 million poor people here. And one day we must ask the question, ‘Why are there 40 million poor people in America?’ And when you begin to ask that question, you are raising questions about the economic system, about a broader distribution of wealth. When you ask that question, you begin to question the capitalistic economy . . .’ (Washington, 1991, p. 250) For King, the theme of job creation in a capitalist economy was an ongoing and primary part of his peoples’ struggle for justice. ‘We need an economic bill of rights. This would guarantee a job to all people who want to work and are able to work . . .’ (King, 1968, p. 24). Today, almost 40 years since the passage of the Civil Rights Act of 1964, no economic rights have been enacted and black unemployment remains twice (8%) that of the official national rate (4.2%). This is so even when civil rights have been accompanied by affirmative action measures designed to promote hiring and remedy past race discrimination. The ADA was not followed by affirmative action for disabled workers. There is no reason to believe disability civil rights outcomes will fair better. In practice, civil rights, which primarily focus on attitudes and prejudice, have not given sufficient attention to the barriers that the economic structure and power relationships erect against the employment of disabled persons. This paper explores the shortcomings of the liberalist ‘equal opportunity’ approach to employment. My emphasis will be on the political economy of disablement, on micro- and macro-economic realities systemic to capitalism, which contribute to the high disabled unemployment rate. Class interests perpetuate the exclusion of disabled persons from the workforce through systemic business accounting practices and compulsory unemployment. If we conceptualise disablement as a product of the exploitative economic structure of capitalist society; one which creates the so-called disabled body to permit a small capitalist class to create the economic conditions necessary to accumulate vast wealth, then it becomes clear that anti-discrimination legislation, by failing to acknowledge the contradictions of promoting equal opportunity in class-based (unequal) society, is insufficient to solve the unemployment predicament of disabled persons. Instead, the liberal rights model serves to forestall criticism of relationships of power at the centre of the exclusion from employment and inequality that disabled persons face. This paper will offer such a criticism.

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The relevance of the political economy Political economy is a term used for nearly 300 years to express the interrelationship between the political and the economic affairs of the state. In terms of economics, liberals tend to believe that the current system is basically just, and that injustices and unemployment, low pay, inequality and poverty that occur within that system are mere unintended consequences of an otherwise beneficent economy. They are reformists who believe that gross inequalities can be leveled through legislation and other measures aimed at correcting ‘market failures’. In the US and elsewhere the DRM similarly has largely accepted the foundations of free market ideology by framing the terms of the justice debate as the rights of disabled people entitled to receive equal treatment from the existing labour market (Russell & Malhotra, 2002). In contrast, left political economy looks to the laws rooted in the ongoing reproduction and expansion of this system of material accumulation as the source of the ills. Radical economists believe that the economic system itself is the problem: the system of profit does not create hardship as the unfortunate mishap of an otherwise just social order; rather, the pain experienced by people under such a system is very much integral to that system, and is required by it in order to function. People, including many disabled people, are excluded from work in such a system, and thus poor and even destitute, not because the system is breaking down, but because it is working exactly as intended. The notion of the US as a meritocracy where individual failings are deemed the result of personal shortcomings is a seductive ideological posture. The appeal to rugged individualism—that we can be anything we want if we persevere—is an American tradition and perhaps a comforting notion, but barriers to advancement and achievement are often unrelated to individual effort, ability or motivation. Disability civil rights laws (or any civil rights) do not subject that assumption to a challenge. Civil rights, for instance, are based on the premise that the individual citizen is an equal actor in the judicial process with the legal power to redress injustice through court challenges to discrimination, but what if the individual, due to her class position, lacks the money to hire an attorney, or has not the education or circumstance to secure those rights? Gender and race are also known determinants of lack of access to the courts. Furthermore, rights depend upon court interpretation. What if the political climate of the courts is such that her rights are likely to be thwarted by judges acting in opposition to the ideological premise of those rights? What if rights are in direct class conflict; if for instance, the business class has amassed such political power that the civil right has essentially become moot through defeat after defeat in the courts and few attorneys will risk taking such cases because they have little prospect of winning (and getting paid)? In these instances individual action and individual ‘right’ is blocked and nulled by class and politics outside the control of the individual. . . . [when ‘rights-bearing persons’] lack the power and resources to properly ‘compete’, rights can do nothing but reinforce the status quo, as those left powerless can do nothing [but] make sporadic and/or symbolic claims. (Young & Quibell, 2000, p. 757)

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The economic system presents a similar set of obstructions. The founding principle for the dominant economic model of our day or ‘pure economics’ (what is falsely referred to as neoclassical economics4) is ‘methodological individualism’, which treats society as nothing more than the apolitical aggregate of its component individuals, and strips the economic structure of any social dimension except the interaction of sole individual activity and projects. While both pure economic and left economic theories might allow that individuals can act independently and according to their wants, left economists recognise that behind these private wants stands an objective structure of reproduction whose requirements dominate the individual in the carrying out of her private interests. While the pure economists hold onto their theory that maximisation of wellbeing occurs because of individual merit, left economists recognise that structural barriers dominate individual wants. As the economist Samir Amin notes ‘real society, far from being built up out of direct encounters among individual behaviors, is an infinitely more complex structure combining social classes, nations, states, big businesses, collective projects and political and ideological forces’ (Amin, 1998, p. 134). A left economic perspective does not concede disablement as a socioattitudinal construct that can be corrected by erasing incorrect attitudes or prohibiting prejudiced-based employment discrimination. It places a different set of questions at the apex of concern, as Dr King posed. Why are there millions of persons both with and without impairments who are willing to work left unemployed in our economy? Why in the richest nation in the world are people still impoverished and working at below living wages, and why are ‘deserving’ disabled persons severed from the means of making a livelihood and subjected to bare survival on at or below poverty disability benefits? Left political economy reflects on the limits of the market as an institution for want satisfaction and that is the approach taken here.

Compulsory unemployment The capitalist economy inherently restricts the liberal application of ‘equal opportunity’ to employment for all because unemployment is not an aberration of capitalism, rather, it is a built-in component of the market economy that requires many people be unemployed against their will (Keynes, 1936, p. 249; Kalecki, 1966, p. 131; Marx, 1967, pp. 589–592). Not every person will be employed, not every person’s material needs will get met through employment. Rather the system is like a giant pyramid scheme in which many ‘surplus’ persons in the labour market will be intentionally left out of the game. This reserve army of labour includes the official unemployed and all those parts of the population, whether part of the work force at a given time or not, who might become part of the work force if the demand for them grew. The surplus population and reserve army overlap; the slums of Mexico City are part of the US reserve army of labour—and they are also a surplus population. The reserve army has historically included women and minority workers. Marx designated

What disability civil rights cannot do 225 disabled persons in the group least likely to become employed; the ‘stagnant’ or passive reserve army of labour. Now that more disabled people expect to participate in paid employment there is the potential for many to join the active reserve army. Disabled persons, however, are the last identity group to enter the workforce, seeking the right to share in the wealth of the nation at a time when unemployment levels are as low as they have been in nearly 40 years and may be below what the investor class traditionally will tolerate. The employment expectations of disabled persons are likely to outstrip material gains due to the limits economic policy makers place on growth (Russell, 2001a, p. 226). To illustrate how US capitalism preserves the reserve army of labour, the focus here will be on the role of the state in augmenting the reserve army.5 US monetary policy as carried out by the Federal Reserve, a system of quasiindependent banks, overseen by a Board of Governors appointed by the President sets interest rates and for many years now has essentially been running the economy of the nation. Large numbers of people are left jobless in part because mainstream economists believe that a threshold of unemployment is necessary to avoid inflation and maintain the health of the American economy (Friedman, 1968; Akerloff et al., 2000). The theory of a ‘natural rate of unemployment’ or nonaccelerating inflation rate of unemployment (NAIRU) has dominated macroeconomics for about 25 years. The Full Employment and Balanced Growth Act of 1978 (the Humphrey-Hawkins Act) mandates that the Federal Reserve Bank promote full employment, but the Federal Reserve connects low unemployment with inflation in disregard of the Humphrey-Hawkins Act. Since the 1970s, the Fed has assumed the task of fighting inflation by raising interest rates, slowing economic growth and keeping unemployment in check. When the unemployment rate drops, the Fed adjusts interest rates upward to discourage more growth (employment) with the intent of preventing inflation. (Greenspan, 1997; Henwood, 1998, p. 219). From 1999 to May 2000, for instance the Federal Reserve raised interest rates about two points. As Federal Reserve Chairman Alan Greenspan explained it, the economy was too healthy, unemployment had fallen too low and wages had started to inch upward, thereby raising the spector of inflation. Greenspan told congress: At some point in the continuous reduction in the number of available workers willing to take jobs, short of the repeal of the law of supply and demand, wage increases must rise above even impressive gains in productivity. This would intensify inflationary pressures or squeeze profit margins, with either outcome capable of bringing our growing prosperity to an end. (Greenspan, 2000) It became necessary, according to the view of the Federal Reserve, to raise the cost of borrowing money, thereby cooling off the expansion and hiring, and

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nudging the unemployment numbers back up to slow wage increases. This deserves repeating. The Federal Reserve sought to raise (not lower) the unemployment rate, to put a halt to both hiring and better wages for workers. Why? Tight labour markets—a ‘labour shortage’ or a smaller active reserve army—mean pressure for wage increases from labour; as unemployment goes down, labour costs go up because there is more pressure for wage increases. There is solid empirical evidence for the negative correlation between wage levels and unemployment. Two mainstream economists, David Blanchflower and Andrew Oswald have produced evidence that, all things being equal, unemployment depresses wages (Blanchflower & Oswald, 1994). Economist James Galbraith has also shown that power, and particularly market or monopoly power, changes with the general level of demand, the rate of growth, and the rate of unemployment. He explains that ‘in periods of high employment, the weak gain ground on the strong; in periods of high unemployment, the strong gain ground on the weak’ (Galbraith, 1998, p. 266). Even Greenspan, the mouthpiece for Wall Street investors, admits a class relationship: a primary purpose of US monetary policy is to keep wages down (Greenspan, 1997). Since full employment undermines labour discipline and the social position of management, political economist Michel Kalecki posits that capitalists accept unemployment ‘as an integral part of the normal capitalist system’ (Kalecki, 1971, pp. 140–141). Economist Michael Piore explains government’s reluctance to pursue full employment objectives; they believe that such policies would create rising expectations among workers—expectations that would not be met and so result in social and political instability (Piore, 1978). Positive unemployment rates, then, become the outgrowth of class struggle over the distribution of income and political power (Pollin, 2000, p. 98). In time, the US unemployment rate did go up from 3.9% in April 2000 to 4.5% in April 2001. About 763,000 people lost their jobs. How does this affect the disabled unemployment rate? The implications of a decision-making class engineered slow down are perhaps greatest for disabled persons, whether one is seeking a job or already employed. The existence of an extremely tight labour market is generally a positive environment for previously unemployed populations to get a job. This is because a low supply of workers forces business to hire and train workers that they may not have been willing to hire or might have avoided at another point in the business cycle (Conlin, 2000). A downturn of the economy, however, means that disabled workers who have a job may be laid off. ‘Disabled workers are usually last in/first out’, explains Peter Blanck, Professor and Director Law, Health Policy & Disability Center, University of Iowa College of Law. For example, economists Edward Yelin and Patricia Katz show that disabled individuals experienced proportionally larger gains during periods of labour market expansion than nondisabled individuals and suffer proportionally greater losses during times of contraction than their nondisabled counterparts (Yelin & Katz, 1994, p. 36). Overall, persons with significant disabilities are hurt by negative changes in the

What disability civil rights cannot do 227 economy evidenced by the fact that disability benefits claims rise during recessions (Disability Policy Panel, 1994). There are further implications. Enlarging the active reserve army of labour is ‘good’ for business because it disciplines labour. Having more people desperate for work keeps competition for jobs high and workers’ wages down, thereby protecting the corporate profit margins and class privilege, which are sacred to the interests of capital. Former President Clinton made this macroeconomic link when he told CNBC ‘. . . you can bring more people from welfare or from the ranks of the disabled into the work force [to keep inflation (wages) down] . . .’ (Insana, 1999). The Personal Responsibility and Work Opportunity Reconciliation Act of 1996, which ended federal welfare entitlements and ensconced welfareto-work as a primary goal of federal welfare policy, and pushed millions of women into the low pay labour force was one such tool. Former Labour Secretary Alexis Herman explained that disabled workers could be put to a such purpose as well: ‘as President Clinton has said: The last big group of people in this country who could keep the economy going strong with low inflation are Americans with disabilities . . . who are not in the workforce’ (Herman, 1999). Hence, it is no surprise that in the late 1990s Washington politicians engaged in policy reforms, such as the Return-to-Work (TWWIIA) legislation, a supply side measure, which promises feed the disabled population on Social Security benefits into the labour force, but does not mandate a jobs creation programme where disabled persons would actually become employed. How large is the reserve army? It is much larger than the officially unemployed. The Bureau of Labor Statistics puts official unemployment at 5.5 million (2000), but another 3.1 million people work part-time when they would rather have a full time job and 4.4 million who need jobs are off the recording charts because they gave up looking and are not counted.6 The real jobless rate is closer to 13 million or 8.9% of the population—more than twice the official rate. How many disabled persons are there to potentially join the active reserve army? The Economic and Social Research Institute finds 2.3 million unemployed disabled people could be working with accommodations (Meyer & Zeller, 1999, p. 9). However, this appears to under-estimate the disabled reserve army. Seventeen million working-age people have disabilities, 5.2 million of whom are working (Trupin et al., 1997). This leaves about 11.8 million either officially unemployed or not in the labour force. Over two-thirds of disabled persons age 16–64 who are not employed say that they would prefer to be working (Harris et al., 1998). Thus, as many as 8.3 million workers could be enlisted in the active reserve army and the labour force would expand by about 8%. Furthermore, there are indications that disabled persons may be significantly under-employed, preferring to work full-time when they are only employed part-time. Between 1981 and 1993, the proportion of disabled persons working full-time declined by 8%, while the number working part-time for both economic and non-economic reasons increased disproportionately (Yelin & Katz,

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1994b). There is a very large pool of disabled persons to utilize as buffers against higher wages and lower profits (Russell, 2001a, p. 228). Essentially, about 20 million working people are condemned, by federal antiinflationary policies which ration employment, to either compulsory unemployment or employment at low wages. This demonstrates clearly that economic suffering, low wages and poverty are not the result of individual moral failings or a pathological ‘dependency’ nor a decline in the Protestant work ethic, but rather, are built-in to the structure of modern capitalism. It is easy to see why Nobel laureate William Vickrey, in his presidential address to the American Economics Association in 1993, called the ‘natural’ unemployment rate ‘one of the most vicious euphemisms ever coined’ (Collins et al., 1994, p. 10). Pure economics rationalises unemployment—as ‘voluntary’—without addressing the economic system or social relations that create it.

Micro-economic matters: capitalist calculus Mainstream economists have traditionally devoted (and limited) themselves to the ‘trade-offs’ between equality and market efficiency. I have already discussed the macro-economic ‘trade-off’ between inflation and employment. In this segment I will focus on the micro-economic matter of economic discrimination in the labour market. Economic discrimination occurs when persons of equal productivity are offered unequal wages or unequal opportunities for employment (Johnson, 1997, p. 161). Liberal society promotes equality by establishing social and political rights that are, in theory, but rarely ever in reality, distributed equally and universally. That is individual rights are considered to be above the rules of the market. There is, however, an interrelationship between market institutions, inequality and equal opportunity. Policy makers are keenly aware that rights affect the functioning of the economy and at the same time, their operation is affected by the market. An entitlement, for instance, is more likely to be established as a right when it has a relatively low cost. When congress enacted the ADA, it recognised that the traditional civil rights model would not serve to provide equal opportunities for disabled people in the labour force. The DRM articulated the need for accommodations in the workplace and Congress determined that the provision of a ‘reasonable accommodation’ was a necessary component of civil rights for disabled persons in order they might be integrated into mainstream employment. Considerable discussion flowed during the ADA debates over the cost that equal rights for the disabled population posed. Senator Paul Simon stated during the congressional hearings, for instance, that congress was going to ‘do the right and decent thing’ by enacting the ADA despite the costs that would be incurred (Americans with Disabilities Act; Hearings, 1989, p. 22). Former President George Bush was intent upon ‘containing the costs that may be incurred’ (Mashek, 1990, p. 4). Indeed, the right to a ‘reasonable accommodation’ was watered down significantly with the injection of the ‘undue hardship’

What disability civil rights cannot do 229 clause to alleviate business concerns. The employer is not mandated to pay for an accommodation if doing so would create ‘undue’ financial hardship on the business; the disabled worker’s theoretical ‘right’ is not a right, it is determinant upon the employer’s calculus. This and other exemptions in the ADA catering to the business class has led me to refer to the ADA as a free-market civil rights bill (Russell, 1998, p. 114) because the business owner’s right to property (wealth) is weighted more heavily than the disabled individual’s ‘right’ to accommodation on the job and, hence, to employment. Even so, the year the ADA was signed, the Cato Institute, a Libertarian think tank, called on President Bush ‘to ask Congress to reconsider’ the ADA since from the standpoint of free enterprise, it represented a re-regulation of the economy that was harmful to business (Disability Rag, 1992, p. 28). Paul Craig Roberts, a supply-side economist at the Center for Strategic and International Studies in Washington, warned on the day the Act was signed that ‘[the ADA] will add enormous costs to businesses that will cut into their profits’ (Shogun, 1990, p. A26). While we may believe that disabled workers should not be denied civil rights simply because employers may incur costs, while attempting to comply with the ADA, business objections are informative because they reveal labour market mechanisms endemic to capitalism. Business practices clearly demonstrate that the economic structure does generate obstacles to the employment of disabled people. Capitalism is a system of social relations in which profit-maximisation and a constant need to revolutionise the forces of production are basic and inescapable conditions of survival, as they have never been in any other social form. Capital is only interested in labour that will increase material wealth. From the standpoint of an individual capitalist, productive labour is simply labour that generates profits—surplus—for the employer engaged in the exploitation of that labour (Marx, 1967, p. 167). Surplus refers to the difference between output and the necessary costs of its production. Typical business accounting practices weigh the costs of employment against the profits to be made. Business calculates what it can gain from the worker productivity against what it pays in wages, health care and benefits (the standard costs of having an employee). The surplus created in production is then appropriated by the capitalist, profits (Marx, 1967, pp. 184–186). The worker receives wages, which in theory cover socially necessary labour or what it takes to reproduce labourpower every working day. Disabled workers face inherent micro-economic discrimination within the capitalist system, stemming from employers’ expectations of encountering additional production costs when hiring or retaining a non-standard (disabled) worker as opposed to a standard (non-disabled) worker who has no need for job accommodations,7 interpreters, readers, environmental modifications, liability insurance,8 maximum health care coverage (inclusive of attendant services) or even health care coverage at all (Russell, 2000, p. 349). ‘Disability’ is a (historical) social creation of capitalism that defines who is

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offered a job and who is not, and what it means varies with the level of economic activity. This is so because a root cause of the work-place discrimination experienced by disabled people is to be found in an accountant’s calculation of the present cost of production versus the potential contribution the employment of a given worker will make to future profits. Pure economic theorists conclude then that if disabilities among the direct producers add to the cost of production without increasing the rate of profit, owners and managers will necessarily discriminate against them. Expenses to accommodate ‘disabled’ persons in the workplace will be resisted as an addition to the fixed capital portion of constant capital.9 This plays out in many ways. The US Commission on Civil Rights noted in a 1998 report that employers continue to express concerns about increased costs of employing disabled workers (US Commission on Civil Rights, 1998, p. 4). Whether the employers’ calculus is based on proven data or based on false projection in any given individual circumstance, employers anticipate extra costs in the form of providing reasonable accommodations, anticipate extra administration costs when hiring non-standard workers and speculate that a disabled employee may increase worker’s compensation costs in the future. (Baldwin, 1997, pp. 42, 49). Employers, if they provide health care insurance at all,10 anticipate elevated premium costs for disabled workers (US Commission on Civil Rights, 1998, p. 134). Insurance companies and managed care health networks often exempt ‘pre-existing’ conditions from coverage or make other coverage exclusions based on chronic conditions, charging extremely high premiums for the person with a history of such health care needs (Baldwin, 1997, p. 47; Johnson, 1997, p. 171). Employers, in turn, tend to look for ways to avoid providing coverage to cut costs (Carrasquillo et al., 1999). In addition, employers characteristically assume that they will encounter increased liability and lowered productivity from a disabled worker (Baldwin, 1997, pp. 46–47). Historically, managers and owners have only tolerated the use of ‘disabled’ workers when they can save on the variable portion of cost of production, e.g. by paying low wages to disabled workers, or through tax breaks and other subsidies. Not-for-profit employers who run sheltered workshops are known to pay well below-minimum wages, but data from the Census Bureau shows a negative association between earnings and disability generally. In 1995, workers with disabilities holding part time jobs (disabled persons are more likely to work part time) earned on average only 72.4% of the amount non-disabled workers earned annually (Kaye, 1998, p. 2). An employee who is too costly (i.e. significantly disabled) to add to net profits at the current level of output will not likely become (or remain) an employee at all. US Census data tend to support this view. Among working-age persons with no disability 82.1% have jobs; among people with a non-severe disability 76.9% have jobs; but for those with a significant disability the level of employment is only 26.1% (McNeil, 1997). Neoclassical economist Richard Epstein echoes the view emanating from the business sector at large when he states that the employment provisions of the ADA constitute ‘a disguised subsidy’ and that ‘successful enforcement under

What disability civil rights cannot do 231 the guise of “reasonable accommodation” necessarily impedes the operation and efficiency of firms’ (Epstein, 1992, pp. 484, 485). Ruling for the employer-defendant in the 7th Circuit in 1995, Judge Richard Posner relates the business schematic of cost/benefit analysis to the ADA: If the nation’s employers have potentially unlimited financial obligations to 43 million disabled persons, the Americans with Disabilities Act will have imposed an indirect tax potentially greater than the national debt. We do not find an intention to bring about such a radical result in either the language of the Act or its history. The preamble actually ‘markets’ the Act as a cost saver, pointing to ‘billions of dollars in unnecessary expenses resulting from dependency and nonproductivity’ β12101(a)(9). The savings will be illusory if employers are required to expend many more billions in accommodation than will be saved by enabling disabled people to work. (Vande Zande v. State of Wisconsin, 1995) Employers and investors rely on the preservation of the status quo labour system, which does not require them to absorb the non-standard cost of employing disabled workers under the current mode of production, let alone the 800 million people who are totally or partially unemployed in the reserve army of labour worldwide. Consequently, disabled individuals who are currently not in the mainstream workforce, who are collecting disability benefits and who could work if their impairments were accommodated, are not tallied into employers’ costs of doing business (Russell, 2001b). The disability benefit system thus serves as a socially legitimised means by which the capitalist class can avoid hiring or retaining non-standard workers and ‘morally’ shift the cost of supporting the ‘deserving disabled’ onto poverty-based government programmes— thereby perpetuating their immiseration. Public policy which then condemns disabled persons to poverty serves another class function. At base, the inadequate safety net is a product of the owning class’ fear of losing control of the means of production. The all-encompassing value placed on work is necessary to produce wealth. The American work ethic is a mechanism of social control that ensures capitalists a reliable work force for making profits. If workers were provided with a federal social safety net that adequately protected them through unemployment, sickness, disability and old age, then business would have less control over the workforce because labour would gain a stronger position from which to negotiate their conditions of employment, such as fair wages and safe working conditions. American business retains its power over the working-class through a fear of destitution that would be weakened if the safety net were to actually become safe. This, in turn, causes oppression for the least valued non-working members of our society; those deemed ‘disabled’ who do not provide a body to support profit-making (for whatever reason) are relegated to economic hardship to shore up the capitalist system (Russell, 1998, pp. 81–83). Civil rights laws have historically demanded equal treatment designed to

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remedy the ‘irrational’ acts of employers. In the case of employment and disability, civil rights laws operate within a capitalist labour market where profit maximisation is ‘rational’. Civil rights laws envision equal treatment, but do not acknowledge the full impact of competition and efficiency governing capitalist economies. The market transgresses on nearly every liberal right, including the right to a job accommodation. Furthermore it needs to be recognised that productivity is at the centre of capitalist accumulation. Capital holds labour as always, a priori, the retarding factor of productivity because labour can never produce fast enough or equivalently, at a low enough valued rate, to suit the expectation of an accelerating profit curve. Therefore, it is likely that impaired persons’ labour will continue to be perceived as less than what is desirable to maximise profit. Equal opportunity laws such as the ADA must fall short of remedying disabled peoples’ employment predicament. For equal opportunity to be truly equal, biases (including economic biases) must be eradicated (Russell, 2000, p. 351). However, historically, capitalism has not been a system of material production that has taken into account the human consequences of its development. It is unlikely that disability discrimination can be eradicated under the current mode of production.

Beyond equal opportunity Some economic theorists,11 ignoring the damaging capitalist super structure, have sought to alter the way neoclassical economics treats disability by attempting to show that it miscalculates the value of disabled workers. In this view, the capitalists need to ‘correct’ their irrational (stereotypical) approach to avoid market failure. What galls these theorists is the ‘unfairness’ of particular markets. They hope through information dissemination to employers to act rationally and create ‘fair’ markets of perfect competition. However well intended, this seems a futile ploy in a fixed game where disabled workers are at the bottom of the competitive labour market and that labour market is, by design, structured to leave millions of workers under-employed and unemployed. Further says economist Amin, pure economics is not rational, it is a parascience (not a science as it claims to be), which needs replacing with a realitybased approach. Why give it any credence by persuading business they aren’t acting ‘rationally’? Politically, pure economics is based on a single preoccupation. Amin writes: [Pure economics is] a preoccupation with showing that ‘the market’ rules with the force of natural law, producing not merely a ‘general equilibrium’ but the best of all possible equilibria, guaranteeing full employment in freedom, the ‘social optimum’ and this preoccupation is nothing but the expression of a fundamental ideological need, the need to legitimize capitalism by making it synonymous with rationality—which, in confor-

What disability civil rights cannot do 233 mity with bourgeois ideology, is seen as nothing more that the use of technically rational means for the individual pursuit of mercantile profit. (Amin, 1998, p. 144) By contrast, left political economy holds: no prior assumptions attributing to the system any tendency toward equilibrium. It does not hold that class struggles upset any really existing equilibrium, or even a really existing, yet provisional, disequilibrium. In sum, Marxist political economy is realistic—whereas there is no realism at all about pure economics, which abstracts from reality (classes, states, the global system) so that its discourse, emptied or reality, is left a mythical fable. (Amin, 1998, p. 144) The ADA and equal opportunity (a fable) is a ‘demand-side’ solution for a capitalist society, wherein the disabled workers and would-be workers, by definition, do not have the social or political power to realise their economic wants. Power lies at production, with the owners of capital. Productive capital is privately owned and owners are not forced to make capital available for the employment of the labour of others. Denial of access, therefore, is an important property right of capitalists to which workers do not have an equal legal rebuttal, since there is no ‘right to a job’. The failure of liberalism forces the need for a new discourse of liberation. We need a radically different approach. Disability, being a reflection of social class—in this instance, proletariats shoved out of the labour force—presents an opening to force a broader discussion about the legitimacy of the organisation of work and or our economy. We cannot ignore private ownership of the social economy. There is no ‘equal opportunity’ when the most important economic decisions about investment, choice of technology, work processes and the organisation of work itself are in the hands of a tiny elite of corporate owners and monetary policy makers. Nor can economic (or any other) democracy be realised when this elite can effectively block progressive public policies by threatening or carrying out disinvestment from the progressive jurisdiction as has happened in the conservative US courts with the ADA employment provisions. Both pure economics and liberal civil rights law remedies are based on the ‘atomistic individual’ and as such need to be seen as products of bourgeois ideology. Perhaps then disabled peoples’ struggle for an equal place in the realm of work will be met with the class consciousness necessary to challenge the current disabled unemployment predicament.

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Notes 1 During the pre-ADA research phase, Congress found that ‘two thirds of all disabled Americans between the age of 16 and 64 [were] not working at all.’ Hearing on H.R. 2273, The Americans with Disabilities Act of 1989: Joint Hearing before the Subcommittee on Select Education and Employment Opportunities of the House Committee on Education and Labor, 101st Congress, 1st Session (July 18 & September 13, 1989; two hearings). S. Rep. No. 101–116, at 9. 2 42 U.S.C. § 12101–12213 (1994). 3 42 U.S.C. § 12101(a)(8)–(9) (1994). 4 Classical political economy was practiced by theorists such as Adam Smith, Ricardo, Karl Marx, and John Keynes who accepted politics as an inherent component of economics. Neoclassical economists reduce economics to an ahistorical and apolitical mathematical technique. 5 There are many sources of the reserve army of labour, some of them, like the destruction of pre-capitalist societies, the detailed division of labour and mechanisation internal to the process of capital accumulation and others, such as the manipulation of credit availability by the US Federal Reserve System, intentional mechanisms of state policy. 6 Under current US definitions of employment, one must be actively looking for work to count as unemployed. People are classified as unemployed if they meet all of the following criteria: they had no employment during the reference week; they were available for work at that time; and they made specific efforts to find employment sometimes during the 4-week period ending with the reference week. If one has given up the search for work as hopeless, he is not counted as jobless. Prisoners, a growing population, are not included in the unemployed figures. In addition, US unemployment statistics may tend to undercount the poor and unemployed more than most European statistics. The BLS uses headcount rather than full-time equivalent (FTE) to account for employment. Since a person who is employed only 10 hours a week counts the same as one who is employed 40 hours a week, significant numbers of the under-employed can skew the employment rates upward as compared to the FTE approach. 7 The equal pay and reasonable accommodation requirements of the ADA increase the costs of labor for individuals with disabilities. Hiring and firing costs would also increase (see Donohue & Siegelman, 1991). 8 ADA provisions allow disabled people may be classified and written up as a ‘risk’ in private insurance, an added costs employers may pay [42 U.S.C. Section 12111(c) (1994)]. 9 ‘Given a choice between two equally productive workers, one requiring the expenditure of significant sums in order to accommodate him and one requiring no such expenditures, the profit-maximizing firm would prefer the worker who is less costly to hire’ (see Donohue, 1994). 10 One in five US workers are uninsured. A primary reason (aside from no US universal health care as exists in most developed nations) is because health care benefits are not offered by employers. The coverage rate has decreased in the past decade, dropping from 73% in 1989 to 67% in 1996 (see Kaiser Family Foundation 1999, p. 30). 11 See references for Michael Stein, 2000, concluding that biases against hiring disabled workers based on inflated costs constitute a market failure deterring employers from making rational decisions, and Peter Blanck, 1998, reporting a beneficial ‘ripple effect’ to hiring disabled workers; in part, accommodation costs are ‘minimal’.

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References Akerloff, G.A., Dickens, W. & Perry, G. (2000) Near rational wage and price setting and the optimal rates of inflation and unemployment. Available on-line at: http://elsa. berkeley.edu/users/akerlof/docs/inflatn-employm.pdf. Date accessed 13 February 2002. Americans with Disabilities Act (1989) Hearings Before the Subcommittee on the Handicapped of the Senate Committee on Labor and Human Resource, 101st Congress, p. 22. Amin, S. (1998) Specters of Capitalism: a critique of current intellectual fashions (New York, Monthly Review Press). Baldwin, M. (1997) Can the ADA achieve its employment goals? Annals of the American Academy of Political & Social Science, 549 (January), pp. 37–52. Blanchflower, D. & Oswald, A. (1994) The Wage Curve (Cambridge, MIT Press). Blanck, P. (1998) The emerging Role of the Staffing Industry in the Employment of Persons with Disabilities: a case report on Manpower Inc. 7 (Annenberg Washington Program Publication). Burgdorf, R., Jr. (1997) ‘Substantially limited’ protection from disability discrimination: the special treatment model and misconstructions of the definition of disability, Villanova Law Review, 42, pp. 409–414. Burkhauser, R.V., Daly, M.C. & Houtenville, H.J. (2001) How working age people with disabilities fared over the 1990s business cycle, in: P. Budetti, J. Gregory & R.V. Burkhauser (Eds) Ensuring Health and Income Security for an Aging Workforce (Kalamazoo, W.E. UpJohn Institute for Employment Research). Available on-line at: http://www.frbsf.org/econrsch/wklyltr/2000/e1200028.html. Accessed 13 February 2002. Carrasquillo, O., Himmelstein, D.U., Woolhandler, S. & Bor, D.H. (1999) A reappraisal of private employer’s role in providing health insurance, New England Journal of Medicine, 109, pp. 109–114. Colker, R. (1999) The Americans with Disabilities Act: a windfall for defendants, Harvard Civil Rights—Civil Liberties Law Review, 34, pp. 99–162. Collins, S.D., Ginsburg, H.L. & Goldberg, G.S. (1994) Jobs for All: a plan for the revitalization of America (New York, Apex Press). Conlin, M. (2000) The new workforce: a tight labor market gives the disabled the chance to make permanent inroads, Business Week, March 20, p. 19. Diller, M. (2000) Judicial backlash, the ADA, and the civil rights model, Berkeley Journal of Employment and Labor Law, 21(1), pp. 19–52. Disability Policy Panel, National Academy of Social Insurance (1994) Rethinking disability policy: the role of income, health care, rehabilitation, and related services in fostering independence, Social Security Bulletin, June 24. Disability Rag (1992) Read ‘em and weep, July-August, p. 28. Donahue III, J.J. (1994) Employment Discrimination Law in Perspective: three concepts of equality, 92 Michigan Law Review, 2583, p. 2609. Donahue III, J.J. & Siegelman, P. (1991) The changing nature of employment discrimination litigation, 43 Stanford Law Review, 983, pp. 1023–1025. Epstein, R. (1992) Forbidden Grounds: the case against Employment Discrimination Law (Cambridge, Harvard University Press). Friedman, M. (1968) The role of money policy, American Economic Review, 58(March), pp. 1–17. Galbraith, J. (1998) Created Unequal: the crisis in American pay (New York, Simon & Schuster).

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Greenspan, A. (1997a) Federal Reserve Board Humphrey—Hawkins Report, February 26. Available on-line at: http://www.federalreserve.gov/boarddocs/hh/1997/february/ reportsection1.htm. Date accessed April 25, 2001. Greenspan, A. (2000) Federal Reserve Board Humphrey—Hawkins Report, February 26. Available on-line at: http://www.federalreserve.gov/boarddocs/hh/1997/february/ reportsection1.htm. Date accessed April 25, 2001. Hahn, H. (1985) Towards a politics of disability: definitions, disciplines and policies, Social Science Journal, 22(4), pp. 87–105. Harris, L. & Associates & National Organization on Disability (1998) Americans With Disabilities Still Face Sharp Gaps in Securing Jobs, Education, Transportation, and in Many Areas of Daily Life. Available on-line at: http://www.nod.org/pressurvey.html. Date accessed April 25, 2001. Henwood, D. (1998) Wall Street (New York, Verso). Herman, A.M. US Secretary of Labor (1999) Remarks before the National Council on Independent Living, the National Association of Protection and Advocacy, and the National Council on Disability, June 24. Insana, R. (1999) CNBC interview with President Bill Clinton, Waterfield Cabinet Company, Clarksdale Mississippi, July 6. Johnson, W. (1997) The future of disability policy: benefit payments or civil rights? Annals of the American Academy of Political & Social Science, 549, January, pp. 160–184. Kaiser Family Foundation & Health Research and Educational Trust (1999) Employer Health Benefits 1999 Annual Survey (Menlo Park, Kaiser Family Foundation). Kalecki, M. (1966) Studies in the Theory of Business Cycles 1933–1939 (New York, A.M. Kelley). Kalecki, M. (1971) Political aspects of full employment, in: Selected essays on the dynamics of the capitalist economy, chap 12, pp. 138–145 (Cambridge, Cambridge University Press). Kaye, H.S. (1998) Is the status of people with disabilities improving? Disability Statistics Abstract 21 (May), pp. 2–4. Keynes, J.M. (1936) General Theory of Employment, Interest, and Money (New York, Harcourt, Brace and World). King, M.L., Jr (1968) Showdown for nonviolence, Look, 32, April 16, pp. 23–25. Levine, L. (2000) The Employment of People with Disabilities in the 1990s (Washington, Congressional Research Service, Library of Congress). Lewis, D.E. (1999) Access and closed doors: despite federal act, number of disabled with no job is rising, Boston Globe, July 4, p. G7. Mandel, E. (1962) Marxist Economic Theory Vol. 1 (New York, London, Merlin Press). Marx, K. (1967) Capital: a critical analysis of capitalist production Vol. I–III (New York, International Publishers) (Original work published 1867). Mashek, J.W. (1990) To cheers, Bush signs rights law for disabled, Boston Globe, July 27, p. 4. Mayerson, A.B. (1997) Restoring regard for the ‘regarded as’ prong: giving effect to congressional intent, Villanova Law Review, 42, pp. 587–612. McMahan, J. (1985) Reagan and the World: imperial policy in the new Cold War (New York, Monthly Review Press). McNeil, J. (1997) Americans with Disabilities: 1994–95 (Washington, DC, United States Bureau of the Census). Available on-line at: http://www.blue.census.gov/hhes/ www/disable/sipp/ disab9495/oldasc.htm. Date accessed April 12, 2001.

What disability civil rights cannot do 237 McNeil, J. (2000) Employment, Earnings, and Disability, p. 129 (Washington, DC, United States Bureau of the Census). Mental and Physical Disability Law Reporter (1998) Study finds employers win most ADA Title I judicial and administrative complaints, 22, May–June, pp. 403, 404. Meyer, J.A. & Zeller, P.A. (1999) Profiles of disability: employment and health coverage, in Kaiser Commission on Medicaid and the Uninsured (Menlo Park, Kaiser Family Foundation). Mishel, L., Bernstein, J. & Schmitt, J. (1999) The State of Working America 1998–1999 (Ithaca, Cornell University Press). Parenti, M. (1995) Democracy for the Few (New York, St Martin’s Press). Pheiffer, D. (2000) The art of political manipulation and the ADA, Disability Studies Quarterly, 20(1), pp. 43–46. Piore, M. (1978) Unemployment and inflation: an alternative view, Challenge, 21, pp. 28–34. Pollin, R. (2000) The ‘reserve army of labor’ and the ‘natural rate of unemployment’: Can Marx, Kalecki, Friedman, and Wall Street all be wrong? in: R. Baiman, H. Boushey & D. Saunders (Eds) Political Economy and Contemporary Capitalism (New York, M.E. Sharp, Inc). Russell, M. (1998) Beyond Ramps: disability at the end of the Social Contract (Monroe, Common Courage Press). Russell, M. (2000) Backlash, the political economy, and structural exclusion, Berkeley Journal of Employment and Labor Law, 21(1), pp. 335–366. Russell, M. (2001a) The new reserve army of labor? Review of Radical Political Economics, 33(2), pp. 224–234. Russell, M. (2001b) Disablement, oppression, and the political economy, Journal of Disability Policy Studies, 12(2), pp. 87–95. Russell, M. & Malhotra, R. (2002) Disability and capitalism, in: C. Leys & L. Panitch (Eds) Socialist Register 2002: a world of contradictions, pp. 211–228 (Suffolk, Merlin Press). Shogun, R. (1990) Halt Bush’s tilt to left, conservatives tell GOP, Los Angeles Times, July 14, p. A26. Stein, M.A. (2000) Labour markets, rationality and workers with disabilities, Berkeley Journal of Employment and Labour Law, 21(1), p. 333. Trupin, L., Sebasta, D.S., Yelin, E. & LaPlante, M.P. (1997) Trends in the labor force participation among persons with disabilities, 1983–1994, Disability Statistics Report 10, June (San Francisco, Disability Statistics Center). Tucker, B.P. (2001) The ADA’s revolving door: inherent flaws in the civil rights paradigm, Ohio State Law Journal, 62, 1. Available on-line at: http://www.osu.edu/units/ law/Law Journal/ tucker.htm. Date accessed 30 July, 2001. United States Commission on Civil Rights (1998) Helping Employers Comply with the ADA: an assessment of how the United States Equal Employment Opportunity Commission is enforcing Title I of the Americans with Disabilities Act (Washington, US Commission on Civil Rights). United States Current Population Survey (1998) United States Census Bureau, Current Population Survey, March. Available on-line at: http://www.census.gov/hhes/www/ disable/disabcps.html. Date accessed 21 May 2001. Vande Zande v. State of Wisconsin Department of Administration (1995) 7th Circuit, 44 Federal 3d, pp. 538, 543. Washington, J.M. (1991) A Testament of Hope: the essential writings and speeches of Martin Luther King, Jr (San Francisco, Harper Collins).

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Wolman, W. & Colamosca, A. (1997) The Judas Economy: the triumph of capital and the betrayal of work (New York, Addison-Wesley). Yelin, E. & Katz, P. (1994a) Labor force trends of persons with and without disabilities, Monthly Labor Review, 117, October, pp. 36–42. Yelin, E. & Katz, P. (1994b) Making work more central to work disability policy, Milbank Quarterly, 72, pp. 593–619. Young, D.A. & Quibell, R. (2000) Why rights are never enough, Disability & Society, 15(5), pp. 747–764. Zola, I.K. (1994) Towards inclusion: the role of people with disabilities in policy and research issues in the United States—a historical and political analysis, in: M. Rioux & M. Bach (Eds) Disability is Not Measles, pp. 49–66 (North York, Ontario, Roeher Institute).

Part III

Research Issues

Introduction Michele Moore and Len Barton

Research is a topic of increasing significance within disability studies, and this is reflected in articles published in Disability and Society. Over the years, the importance of widening the diversity of disability research practice, especially in relation to the activist agendas of disabled people themselves, has raised challenging issues. New, and frequently contested, understandings of the nature and purpose of research have been of paramount importance. From this fundamental concern, a series of connected issues can be identified, including: the position of disabled people in relation to the planning, implementation and dissemination of research; the disabling nature of particular aspects of research practices; the position and responsibilities of researchers; the issue of power in terms of the social relations of research practices; and the voices of disabled people and their central significance as the focus of research. What the articles in this section of the book demonstrate is how far these and other challenges have been seriously engaged with, but most importantly, the extent of the work that still needs to be undertaken. David Gerber’s (1990) focus, in the first article to be presented in this section, is on the importance of ‘listening to disabled people’ and ‘the problem of voice and authority’. This raises questions about power-relations that have driven the evolution of disability research practice since Disability and Society first went to press. The imperative for the inclusion of disabled people’s voices in research about their own lives is articulated throughout all the articles that follow. The possibility that disabled people should be in a position to actually determine and produce research according to their own priorities and concerns is brought increasingly into sharper focus as debates about disability research practice have unfolded over the decades covered by this selection. Mike Oliver’s ground-breaking article in 1992 asserted the necessity for disability researchers to evolve innovative modes of enquiry capable of resisting the oppressive dynamics typically embedded in dominant discourses of conventional academic research practice and gave readers the confidence to take this agenda forward. Oliver’s paper, and others published in the same year as part of the journal’s 1992 Special Issue on researching disability, tasked researchers with recognizing struggles between aspirations of disabled people, academics and practitioners, between advocates of the social model of disability and a medical

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perspective, and between those advancing emancipatory models of enquiry and those who argue such research potentially oppresses some disabled people and their researcher allies. All of the papers gathered together for this section address aspects of these struggles and are subsequently concerned with advocacy of new methods and disability research practices. Tangible through the selected papers are the inequalities between disabled and non-disabled people involved in the production of research, the sensitive and intensely demanding issues involved in finding easy and comfortable ways of raising the voices of people who are differently articulate and the shifting landscapes of inclusion in relation to ways of doing disability research. The significance of raising seldom-heard voices is strongly asserted in the work of Jan Walmsley (2001) in this part of the book. This article gives some glimpses into the range of debates about the significance of, and range of strategies for, accessing insider perspectives that have been covered within the journal over the years. Two other papers included have since been credited with pioneering a focus on consideration of ways in which disabled people’s lives are additionally mediated by determinants of diversity other than impairment. Jenny Morris’s (1992) paper looking at feminist perspectives on researching disability, and Ozzie Stuart’s (1992) on the links between race, disability and oppression, highlighted ways in which close scrutiny of alternative perspectives crucially informs the researcher’s understanding of disabled people’s experience, and these publications represent milestones in thinking about disability research issues. Some of the most influential of all of the papers have been those that have helped establish a premise of consultation in disability research, inherently seeking to bridge the gulf between academic and activist agendas and the actuality of disabled people’s lives. Yet the complexity involved in undertaking disability research which will enable disabled people’s futures to be drawn up on their own terms remains a familiar and perplexing issue to many readers. Carrying out research that fulfils the frequently opposing agendas of research institutions and disabled people’s own aspirations remains a challenge for the vast majority of researchers in this field. To seek to maximize the impact of research and theoretical development on practice and in the lives of disabled people through the adoption of user-led approaches to theorizing and researching disability, in the target-driven environment that most research takes place, frequently requires researchers to take risks with their careers as they strive to pin their work firmly to the aspirations of disabled people. Likewise, disability activists find themselves required to compromise aspects of their own agenda in their efforts to bring about change through research action. Both sides of this dilemma are explored through papers presented in this section. The article by John Davis (2000) looking at links between research and social change shows that the relationship between researchers and ‘the researched’ continues to be a major preoccupation of researchers writing in the journal. Davis asks questions about how we can analyse this relationship in order to maximize the extent to which disability research can advance the

Introduction 243 project of meaningful social change. The paper stresses the importance of making sure disability research practice is characterized by commitment to developing meaningful collaborations so that researchers and disabled people can work together across a range of experiences, cultures and structures in order to carve out crucial opportunities for future change and development that makes a difference end users prioritize. The most recent article selected for this section, by Colin Barnes (2003), reflects on progress that has been made in improving disability research practice since the principles of ‘emancipatory’ disability research practice – to which all research reported in the journal turns in one way or another – were clearly articulated in 1992. Colin Barnes demonstrates that many of the important epistemological questions about the relationship between disability research practice and social change remain unresolved and warns that the conditions of research production increasingly militate against the preservation and promotion of an emancipatory research paradigm. Continuing to direct commitment and attention to problematizing the nature of disability research practice remains as important as ever. Hence in this collection of articles on disability research issues published in the journal over the years, the notion of critical reflection on our basic assumptions remains very much alive. We may have expended a great deal of energy on improving disability research practice over the years, but there is still work to do to consistently create inclusive research practice that brings the aspirations of disabled people to the fore.

Disability studies articles Gerber, D.A. (1990) ‘Listening to disabled people: the problem of voice and authority in Robert B. Edgerton’s The Cloak of Competence’, Disability, Handicap and Society 5, 1, 3–23. Oliver, M. (1992) ‘Changing the social relations of research production?, Disability, Handicap and Society 7, 101–114. Morris, J. (1992) ‘Personal and political: a feminist perspective on researching physical disability’, Disability, Handicap and Society 7, 2, 157–166. Stuart, O.W. (1992) ‘Race and disability: just a double oppression?’, Disability, Handicap and Society 7, 2, 177–188. Davis, J.M. (2000) ‘Disability studies as ethnographic research and text: research strategies and roles for promoting social change?’, Disability and Society 15, 2, 191–206. Walmsley, J. (2001) ‘Normalisation, emancipatory research and inclusive research in learning disability’, Disability and Society 16, 2, 187–205. Barnes, C. (2003) ‘What a difference a decade makes: reflections on doing “emancipatory disability research” ’, Disability and Society 18, 1, 3–17.

15 Listening to disabled people The problem of voice and authority in Robert B. Edgerton’s The Cloak of Competence David A. Gerber Department of History, State University of New York Abstract Using anthropological methods and a theoretical perspective derived from the sociology of Erving Goffman, Robert B. Edgerton’s The Cloak of Competence: stigma in the lives of the mentally retarded (1967) brought an unusual degree of empathy to attempts to understand the lives of those labeled ‘mentally retarded’. Yet the book was conceived prior to the time when mental retardation began to be widely formulated as a social construction rather than a clinical syndrome. This essay analyzes the consequences for Edgerton’s understanding of the lives of recently deinstitutionalized people of this uneasy combination of empathy and acceptance of mental retardation as an unalterable condition. Particular attention is paid to the ways in which Edgerton’s conceptualization of mental retardation served to deny to members of his sample a voice with which to speak authoritatively about their own situation. Edgerton’s revisionist follow-up research, which called into question some aspects of his earlier conceptualization of mental retardation, is also discussed.

I. Perhaps the most significant contribution to scholarship of the democratizing cultural transformations in Western societies that began in the 1960s has been the rise of intense questioning of the legitimacy of official and institutional cultural authorities. In literature, history and other disciplines, feminist, Third World and ethnic minority voices have increasingly initiated debate about how the traditional, largely élitist and exclusivist canons by which we have attempted to represent reality and to codify and legitimate knowledge have come into being. These groups quite accurately conceive of the opportunity to speak for themselves as a necessary precondition for their empowerment (e.g. Deloria, 1973; Asante & Vandi, 1980; Spender, 1981; Gates, 1984; DuBois et al., 1985; Ecker, 1986; American Indian Program, Cornell University, 1988). The same challenge has transformed studies about people with disabilities, who now have an increasingly authoritative voice in our efforts to conceptualize the experiences and meanings of physical and developmental impairment1. The rise and growth of this voice have occurred simultaneously with the emergence of

Listening to disabled people 245 the current disability rights movement, which has put forward unprecedentedly broad demands for the empowerment of people with impairments (Bowe, 1978; DeJong, 1979; Williams & Shoultz, 1982; Zola, 1982; Scotch, 1984; Browne et al., 1985). So powerful is the voice of disabled people becoming, and so powerful are the intellectual and ideological forces that seek to give that voice centrality in shaping the discussion of disability, that it may soon become difficult to recall that a short time ago people with disabilities were little more than the objects of study. Their voice had less legitimacy and less authority than that of the medical, rehabilitation, educational and welfare bureacracy professionals who studied and worked with them. Generally, these experts have been well-meaning people, who have often urged compassion and responsibility on societies guilty of cruelty or indifference. But their conceptions of disability and of disabled people gave rise to the development of social policy that imposed, in the name of a benign paternalism, bureaucratic manipulation and socio-economic dependence, and ultimately dead-end lives, on people with disabilities. The denial of a voice to disabled people has been over-determined in the case of those labeled ‘mentally retarded’ by our historically shifting criteria. In no other area of disability, including much of what we have identified as mental illness, has listening to disabled people telling us about their lives seemed less diagnostically and therapeutically relevant. This label has carried with it the understanding that individuals lack the power to learn and to reason. How can one admit such a voice into meaningful discussion about anything beyond the most basic, immediate needs? Our present assumption, however, is that researchers must do so. Perhaps since Bogdan & Taylor (1976) published their widely cited article consisting largely of the oral testimony of a man diagnosed as retarded, and challenged readers to grant him the authority to speak about his understanding of his life, researchers have increasingly sought to have retarded people speak for themselves. These researchers are urging a conceptual reorientation not only out of a sense of fairness or of the need to recognize the human dignity of retarded people, but as an essential step in recasting social welfare policy. The point is to make it possible for retarded people to lay claim to exercise as much power as possible in determining the course of their lives. For example, working with the written testimonies produced for a literary expression workshop, of people considerably more impaired developmentally than Bogdan & Taylor’s “Ed Murphy”, Susan Lea (1988) revealed coherent self-understandings and personal aspirations and fears among them. In the tradition of Braginsky & Braginsky (1971), Lea raises probing questions about the scientific integrity of the concept of mental retardation, which, she argues, is a social construction employed to repress those, especially children, who are different. She urges us to cultivate systematically such self-expressions and, as much as possible, to give retarded people the benefit of the doubt in establishing the right of self-determination. The path to this shift in our paradigm of mental retardation has not been an even one. Inevitably we have had to reach the point we have arrived at by

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wrestling with the inadequacies, and ultimately the exhaustion, of our past paradigm of mental retardation. These inadequacies revealed themselves most strikingly when our paradigm could no longer contain the mounting contradictions that were resulting from attempts both to understand precisely what the competencies of mentally retarded people actually are and to make equally precise distinctions, in evaluating their thought and behavior, between that which is different and that which is actually deficient. Older conceptions were not immediately abandoned, however, even as the evidence of their inadequacies mounted. The goal of this essay is to examine a justly respected work in the literature of mental retardation—Robert B. Edgerton’s The Cloak of Competence: stigma in the lives of the mentally retarded (1967) (hereafter, COC)—in order to illustrate the difficulties faced by those attempting to make sense of what we have called ‘mental retardation’, as evidence gathered around them of the need to abandon the paradigm of mental retardation that was dominant for most of this century. My view is that this work is unsuccessful in its primary goal—understanding the self-conception of men and women said to be retarded. Contradictions just below the surface of the text signal this failure and point to the reasons for it. Edgerton’s elaborate conceptualization, which is centred around the concepts of stigma, denial, role-playing and role strain, bends under the weight of its own contradictions, and in the process so do the policy prescriptions that seemed to emerge logically from that conceptualization. This essay is essentially a work of intellectual history and of textual analysis that incidentally has policy implications. I do not wish to be construed as criticizing Edgerton for not knowing what is now taken for granted increasingly among those who study mental retardation and disability. Some of my criticisms, were in the brief, less developed form current at the time, as I discovered after having spent considerable time analyzing the text, in two of the contemporary academic reviews of the book (Gladwin, 1968; Scott, 1968). But, under any circumstance, it would be unfair and an indulgence in the fallacy of anachronism to subject Edgerton’s work to criticism based on the knowledge we have accumulated in the last quarter of a century, knowledge that Edgerton has played a large part in accumulating. We should recognize Edgerton’s book as a compassionate work that attempted in an innovative way to take those it analyzed seriously, as complex, multidimensional people. Unfortunately the theories behind the attempt do not allow it to succeed completely. Moreover, just as COC itself helped to begin the process of shifting our paradigm of mental retardation, so, too, did Edgerton’s post-COC writings, which have often been self-critical. Indeed Edgerton has been his own revisionist, chipping away at the dead wood of traditional perspectives by confronting the indequacies in his own published work. Long after COC’s publication, he wrote of his growing misgivings about its conceptualization, and in the research he has completed since its publication has gone on to point the way toward a larger and more dynamic view of the lives of persons said to be retarded. Had he gone further—to question the concept of mental retardation itself, as a social construction dubiously applied to the people in his samples

Listening to disabled people 247 who had been diagnosed as mildly mentally retarded—this reconceptualization would have entered even more promising territory. As it is, though, there is much to be learned from Edgerton’s developing realization of the shortcomings of his efforts to understand the lives of those labeled ‘developmentally disabled’. In an important discussion of Edgerton’s crosscultural investigations of retardation (Edgerton, 1968, 1970, 1975, 1979), the principal direction of his work in this area since the publication of COC,2 Luckin (1986) notes that Edgerton has explored the key question of whether competence is the creation of cultural systems and political, social and economic arrangements. Edgerton himself continues in these investigations to suggest the likelihood that all such research will ultimately reveal baseline conceptions of competence common to all cultures and societies. As Luckin observes, he seems reluctant to dispense with a fundamentally naturalistic view of mental retardation. This is at odds with the argument I wish to advance here and with much current research, which conceives of most mental retardation as a socially constructed syndrome, highly variable across time and space (e.g. Mercer, 1973; Luckin, 1986; Manion & Bersani, 1987; Lea, 1988). Still, the effect of Edgerton’s work has been not only to force us to formulate more sharply our questions about classification and labeling processes, but also to open the field of study to sociological, historical and anthropological investigation and to remove it from the control of the ideological, professional and institutional monopolies that had long dominated it. Yet this has been true mostly of his more theoretical writings. Here we will be concerned exclusively with Edgerton’s ethnographic work, which was done in the 1960s and early 1970s with samples of mildly mentally retarded people, an area of his work which, while less touched by his growing recognition of the need for critical ideas and expanded disciplinary perspectives in forming theory about retardation, has been nonetheless no less troubled by the inadequacies of the older paradigm of retardation. We are concerned, then, with his research encounters with flesh-and-blood people labeled ‘developmentally disabled’. I intend to argue that though Edgerton does not challenge the validity of the application of the label ‘mentally retarded’ for the individuals who constitute his samples, this work brings us to the point at which we must do so. If one investigates, as he does not, the larger contexts of the lives of those in his samples through historical and social structural analysis and evaluates, on their terms, their personal testimonies, it will appear that a plausible case may be made that these people did not possess a clinically identifiable disability. They were instead victims of a social process that rendered them marginal and powerless and culminated in institutionalization. Having accepted the validity of the label in these cases, however, Edgerton is forced to find ways to account for what otherwise could be construed as a reasonable analysis by these individuals of their own life histories and current circumstances. In effect, Edgerton’s theoretical and narrative strategies serve to deny them the authority to analyze their own circumstances. He must explain away what they do say about themselves. Erving Goffman’s interactionist sociology, with its emphasis on role-playing and

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masquerade in ordinary social encounters, serves the immediate purposes of Edgerton’s analysis here, but ultimately succeeds only in deepening the contradictions in the argument. In the end, we are left wondering how retarded people could command such an arsenal of demanding roles which require considerable self-scrutiny and understanding of others. We are ultimately led to wonder also whether they themselves might have the fullest view both of their situation as people bearing a discrediting label and personal history and of the assistance they require to take control of a normalized existence.

II. Analysis in COC is based on the experience of a group of 100 adult men and women who were discharged from a southern Californian state mental institution in or around 1954. This early experiment in deinstitutionalization was premised on the determination that each of these individuals was capable of holding a job and hence, it was assumed, living independently. (Though they would not know it until much later, almost all of them were sterilized as a condition for their release. They were told they needed appendectomies.) The fieldwork was done in 1960–61. After sifting out those that could not be located and a larger number who lived too far away to be studied conveniently, 48 individuals remained. Almost equally divided between men and women, the large majority were whites around 35 years old, who had been in institutions for an average of fully 20 years. Though a great part of their lives had been spent in state institutions, these people nonetheless, as Edgerton tells us, were representative of the “upper stratum” of retarded people in their emotional stability, capacity for selfhelp and formal intelligence (Edgerton, 1967, pp. 10, 11–18). How are we to understand the competencies of these individuals? At the beginning of the book, while analyzing the basic characteristics of the sample, Edgerton presents many caveats warning readers about the limits of IQ scores in establishing both aptitude and the capacity for social effectiveness (Edgerton, 1967, pp. 4–6).3 He states a forward-looking position for the time: environmental deprivation in childhood, not hereditary or some clinically identifiable physical condition, probably accounts for most individual cases of mental retardation. Nonetheless he depends on IQ scores, with all of their fixity and finality, as “the operational tool” (Edgerton, 1967, p. 4) to identify the potentialities of competence of those in his sample. Almost all of these “upper stratum” are, for retarded people, in the higher ranges of the IQ scale. They are mostly mildly retarded, with mean IQ scores around 65, but in 13 cases they are borderline, with IQs around 70 and even higher. In spite of his own warnings in these pages about the limits of IQ testing and the socio-cultural origins of most mental retardation, in the final analysis his position regarding the competence of these former inmates is that we should not question the judgment that led them to be labelled and institutionalized. Since responsible medical experts and civil authorities declared them retarded (largely on the basis of a diagnosis derived from just such IQ tests), we should proceed with the understanding that they are retarded4.

Listening to disabled people 249 At a time when the authority of both IQ testing and the largely IQ-derived classification and labeling processes by which determinations of mental retardation were being reached were not yet subject to the intense, systematic challenge they would sustain in the late 1960s and the 1970s (Mercer, 1973; Eckberg, 1979; Synderman & Rothman, 1988), this judgment appeared considerably sounder than it would but a decade later. The contemporary reader, however, will have been alerted immediately to the decisive consequences for the analysis of this conflation of conceptualization and methodology. For convenience’s sake, and in deference to the conventional wisdom, a line of argument has been adopted that will explain away complexity and ambiguous or contradictory evidence. Ultimately, this line of argument will deny these individuals the right, not so much to speak, but more importantly to be heard, particularly when they seek to challenge the label they have been given. Individual life histories constitute the heart of the book (Edgerton, 1967, pp. 19–98). They serve even more pointedly to raise the question of the origins of these people’s institutionalization and the extent and nature of their current deficiencies than does the brief, if greatly consequential, discussion of IQ scores at the beginning. The story of their early years is one of disorganized families and parental cruelty, neglect or desertion, followed for some by multiple, shortterm foster care arrangements, and finally by instititionalization after a diagnosis of retardation. A number seem not to have strong, or any, ties with their families-of-origin. What is to be made of this personal background; and what does COC make of it? While Edgerton does not develop his sample as an age cohort formed in a specific historical context, we may well wish to reflect on the impact of the economic crisis of the 1930s on these lives. Many of these individuals were instititionalized when they were young, during the decade-long Great Depression. Affluent, higher-status people have rarely spent two decades, if any time at all, in public mental institutions. By the logic of the situation, we may assume that the large majority of these individuals were from working- or downwardly mobile middle-class families. In a social system predating the welfare state, the burden of the economic collapse fell upon individuals and families, many of which collapsed under the strain (Angell, 1936; Cowan & Ranck, 1938; Bakke, 1940; Komarovsky, 1940). Desertion and family break-up were common in already weak or disorganized families. One may easily imagine the extremity of circumstances by which younger children, particularly girls, came to be perceived as unacceptable burdens. Since 1900, technological change and legal reform had been causing a decline in the availability of work for all people under 16, but there were relatively fewer jobs for girls than for boys (Davis, 1936; Cowan, 1976; Zelizer, 1985). Girls were unlikely to find petty, low-wage work of the sort boys regularly found (working in petrol stations or delivering newspapers, groceries, etc. or doing unskilled tasks in small factories and workshops). The availability of the sort of domestic work they did do had been declining for many years. Moreover, domestic help was often the first expense cut from depression-strained budgets. Also, girls suffered the burdens of both the

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often internalized, patriarchal cultural injunctions that curbed their mobility, and an acute sexual vulnerability that made it more dangerous for them than for boys to wander off to live in some ‘hobo jungle’. Though the data are not analyzed, in fact the women were found to have been institutionalized more than three years longer on average than the males. Even when adjusted for age, the difference of over a year is noteworthy. It may be a clue to the origins of the process by which the poor, neglected and defenseless have been transformed into retarded people (Braginsky & Braginsky, 1971; Mercer, 1973). I do not know the details of these case-histories beyond those presented in the text, which, as it is, actually seeks to undermine the credibility of the source—personal testimony—of much of what the reader comes to know of these lives. I only wish to point out that, on the strength of the evidence that COC does present, a plausible case could be made for centering the analysis around the socio-economic and historical contingencies, beyond the individual’s competence, by which a cast-off, lower-status child came to be in a position to be labeled ‘retarded’ by social welfare workers, police, courts and hospital staff. There is ample historical evidence, as Begab (1975) establishes, to suggest the need to inquire about this possibility. Institutionalization, let alone such long-term residence at an institution, has never represented the common experience of US retarded people, even retarded people of lower socioeconomic status. Historically perhaps no more than 10% of the US retarded population has been institutionalized. Moreover, the large majority of those who have been formally designated ‘mildly mentally retarded’ have resided in the community, as have, of course, the much larger numbers of undesignated people of relatively low IQ. But among the retarded population, mildly mentally retarded people have been especially vulnerable to injustice and, particularly, friendlessness. The severely retarded, who possess clinically identifiable disabilities resulting from birth defects or injuries, have been objects of pity, and have had effective public advocates in the American Association on Mental Deficiency and the American Association of Retarded Citizens. Mildly mentally retarded people, who lack a clinically identifiable impairment, have been a puzzling, often disturbing, mystery. With their relative but unpredictable competencies and occasionally inappropriate or simply different behavior, they have been perceived as potentially disruptive. They have had no organizations to defend them. They have been particularly vulnerable to institutionalization, especially when discovered engaging in sexual deviance or public anti-social behavior and when, as children, they have been abandoned under circumstances of the sort of family disorganization that routinely plagues the lower classes. Their retardation is socio-cultural in both its etiology and indeed in those of its manifestations that attract attention. They have not been institutionalized simply for possessing low IQs. To understand why COC did not attempt to find relevance for its analysis in (as opposed to alluding briefly to) such socio-historical realities, we may begin by exploring the impression these people made in the ethnographic encounters

Listening to disabled people 251 that provided much of the data for the study (Edgerton, 1967, pp. 25–26, 44–45, 59–60, 65, 69–72, 79–80, 170, 206). Regardless of how many compelling social contingencies might have led them years before to be labeled ‘mentally retarded’ and committed to a state hospital, after spending two crucial decades of the modern life cycle in the restricted, controlled and frequently bizarre world of such a place it is not surprising to find them behaving and speaking in distinctly off-putting ways. Self-presentational social skills are essential to giving an impression of normality (Kleck, 1975), but the ones displayed by members of the sample during interviews hardly appear finely tuned by conventional standards. Interpersonal communication and personal grooming seem especially weak. Those interviewed are often described as unkempt and poorly dressed. Their speech is characterized by the awkward, ungrammatical constructions common to those who were persistently neglected when young, and who have, as they frequently tell us, received no social or intellectual education. They describe themselves as “nervous”, “confused”, “mixed up” and “hard to understand”. And so they probably seemed to Edgerton and his team of interviewers. Under these circumstances, especially when scientific and medical experts were providing ample theoretical justifications, it would not be difficult to mistake effect for cause and form for content. In short, such individuals appeared deficient enough in significant ways to seem retarded. But however awkward the formal aspects of their conversation, the individuals in the sample are actually quite articulate when they speak about their lives, in and out of the hospital. We have evidence of this in COC itself. In analyzing the self-concept of the sample members, Edgerton reprinted often substantial passages from their testimonies, only to interpret them in ways that subvert them. To understand the disparity between what these people say about themselves and what the author makes of what they say, we need to look into the theories and methods that influenced the conception of the argument.

III. Prior to the 1960s studies of mental retardation were dominated by psychologists, who, as Manion & Bersani (1987) have noted, masked their normative assumption with the language and methods of science. Anthropologists such as Edgerton, and those retardation specialists such as Bogdan and Taylor who adopted anthropological methods, brought new, humanistic perspectives to the study of retardation. Utilizing the qualitative methods of ethnography (participant observation, narrative description and in-depth interviewing), they attempted to present the retarded individual empathetically and from that individual’s point of view (Edgerton, 1979, pp. 49–72; Manion & Bersani, 1987, p. 239). The breakthrough here lay in the willingness to assume that retarded people could have a point of view. That such methods were a welcome departure from the intensely objectifying analysis of psychologists is evident in the tone of some of the reviews of COC that were written by retardation specialists, who praised it for providing “a very personalized light.” (Anon., 1968) on

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retardation and for refusing to submerge retarded people “under the system, the therapeutic technique, or the goals of sponsored programs” (Heckel, 1968, p. 313). But without the understanding later researchers achieved of the need to go beyond this perspectival and methodological advance to analyze the specific processes of identification, testing, labeling and institutionalization by which the population of retarded people is formed at a given point in time, anthropological work still faced a theoretical dilemma. The disciplinary project of anthropology has been the study of how collectivities of people form, learn and reproduce culture. Yet here those attempting to apply the methods and insights of anthropology were studying deficient learners who could not confidently be said to be a group, let alone a subculture. By virtue of their mental impairment, they seemed unable to impose a jointly shared moral order on their lives. Too, Edgerton found that once deinstitutionalized they avoided one another—in fear of mutual exposure, he believed (Edgerton, 1967, pp. 162–163). Thus, even while employing an empathetical and phenomenological, or as Edgerton prefers, “naturalistic” (Edgerton, 1975, p. 128), methodology that served to humanize retarded people, this ethnographically-grounded research would require theory, probably from outside the disciplinary boundaries of anthropology, that was able to account for the thought and behavior of people who were defective culture bearers. For those, like Edgerton, seeking to create empathy with retarded people, looming large in their search for theory was the necessity of capturing the drama and pathos in the situation of the sort of individuals who appear in COC. They had spent most of their lives in a safe, strictly confined world, in which those thought unable to make significant decisions and effective self-presentations were relieved of the necessity of doing so. Then the experts who had always controlled their lives began to change unilaterally the therapy prescribed for people like them. Soon they found themselves, with all the limitations they had been told for years that they possessed, in the impersonal and frequently competitive, public world of work, neighborhood and citizenship. Here, being even mildly retarded hardly afforded one respect, let alone acceptance. There would be little positive return to them if others discovered that they had been institutionalized as retarded, but neither did there seem to be any sure way to hide so basic a deficiency. The deficiency itself seemed to undermine an individual’s chances of passing for normal. These, then, seemed to be powerless, inept people who were in a trap, from which the chances of escape were very small. Erving Goffman’s interactionist sociology, which reached the height of its influence in the early 1960s, must have seemed tailor-made to comprehend the complex, sad and confused lives of these individuals, and hence to fulfill the theoretical requirements of Edgerton’s research. Certainly a great deal of the conceptualization of the book rests on Goffman’s work, so we need to look into his ideas. Goffman’s sociology is a telling blend of the popular and academic preoccu-

Listening to disabled people 253 pations of the early post-war decades in the USA (Whyte, 1956; Mills, 1959; Bell, 1960; Gouldner & Peterson, 1962; Gouldner, 1970). The social world was then widely perceived by US intellectuals as increasingly controlled by massive, irresistible, but not necessarily malevolent, public and private bureaucracies that were demanding conformity and cooperation as the price of security and success. Opportunities for dissent and political alternatives were thought to be declining before the force of technocratic rationalization. Social conflict seemed a thing of the past. Amidst their growing powerlessness, however, most individuals remained personally committed to individualized goals and competitive values. Like other social thinkers of the time, Goffman was struck by what he saw as the narrowing boundaries within which individuals were able to fashion themselves. One consequence of this insight was a belief in the growing significance of role-playing in a situation in which public behavior and private feeling and aspirations seemed destined to be at odds. Rewards no longer appeared to depend on character or ability, but rather on adopting a particular conception of the self and on effectively mobilizing an arsenal of appropriate public behaviors. Goffman’s project was the study of self-presentation and social interactions between individuals in this emerging social order. Goffman’s irreverent delight in stripping away cultural facades and the pretensions of the power brokers and credentialed experts of this technocracy, and his insightful, dramaturgical renderings of ordinary interpersonal encounters, in which no one could say exactly what they were thinking, produced mordant and illuminating perceptions of daily life. (Goffman is actually a good deal more skeptical about the moral claims of experts, officials and helping professionals than is Edgerton.) But on balance the costs of Goffman’s vision of social reality were greater than the theoretical gains derived from it, because he was not able to explain the relevance of larger social, political, economic and ideological contexts of behavior and took little interest in power relations, competing interests and social inequities (Gouldner, 1970, pp. 378–390; Sennett, 1973, pp. 29–32). As one of his critics, the sociologist Alvin Gouldner, said, interactionism is “a social theory that dwells on the episodic and sees life as it is lived in a narrow circumference, ahistorical and noninstitutional, an existence beyond history and society . . . which comes alive only in fluid, transient encounter” (Gouldner, 1970, p. 379). This systematic lack of engagement with the workings of power, and with social process itself, actually resembles Edgerton’s approach to the question of whether we should accept that the individuals in this sample are, in fact, retarded. The absence of such concern establishes both Goffman’s and Edgerton’s work as artifacts of the intellectual climate of much of US social science in the early post-war decades. For a scholar whose intuitions about social behavior appear most appropriate to understanding the lives of middle management, it is curious that Goffman’s most creative work was done in the analysis of discredited, marginated people. But then the other side of the fascination of Goffman and his contemporaries with ‘normality’ was an almost voyeuristic interest in ‘deviance’ and in the lives of those who could not or would not conform. In Asylums (Goffman, 1961), a

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collection of four new and reprinted essays, and Stigma (Goffman, 1963), Goffman attempted to understand the self-concepts and self-presentations of homosexuals, prostitutes, prisoners, the physically disabled and disfigured and, especially, people with mental illness. The central organizing concept of this project Goffman called the “moral career” (Goffman, 1959, pp. 123–142; reprinted, 1961, pp. 127–169; 1963, pp. 32–40). By this he meant the series of personal interactions through which stigmatized individuals acquire a consciousness of their discredited identity and of the negative images and expectations others bring to dealing with them. These interactions give rise to the formation of a fragile, tortured self-conception and to the molding of a repertory of behaviors appropriate to staving off humiliation. For Goffman the selfenclosed world of the hospital for people with mental illness, with its contradictory goals of socializing people into the role of compliant patient while readying them for release and social autonomy, provided an ideal laboratory for studying the phenomenon of the moral career. The complex demands such institutions made on patients brought out the types of nuanced behaviors that interested him. He did not, however, analyze systematically the lives of the institutionalized or deinstitutionalized mentally retarded people. Probably because learning behavior plays a large part in the moral career, Goffman may have believed it inappropriate to apply the concept to those who were defined by their inability to learn. Retarded people seemed uniquely able to protect themselves from the consequences of being social pariahs, for the very reason that they could not know they were pariahs. Because of his own merging understanding of the mildly mentally retarded people he was investigating, Edgerton came to believe that the concept of moral career was relevant to his research. Five years before the publication of COC, Edgerton, with Georges Sabagh, began to extend the concept of moral career to encompass institutionalized mildly mentally retarded people (Edgerton & Sabagh, 1962). They noted how contact within institutions with much more severely developmentally disabled individuals led mildly retarded people at first to terrifying self-doubt (“mortification”). Eventually, however, as a result of constant comparisons they were inevitably led to make between themselves and profoundly retarded people, they gained a measure of selfrespect, which helped prepare them psychologically for life outside an institution. Edgerton, however, was impressed by the cunning nature of the second part of this process of self-evaluation, which he and Sabagh called “aggrandizement”. This led to a desire to examine the relevance to institutionalized retarded people of Goffman’s analysis of those moral careers in which denial and efforts to pass for normal are characteristic (Edgerton & Sabagh, 1962, pp. 266–271). “Acceptance of the retarded self”, noted Edgerton & Sabagh (1962, pp. 271–272), “is not a functional preparation for life outside the hospital in the world of normals”. The process of aggrandizement, on the other hand, reinforces those behaviors—“an elaborate presentation and defense of self”—that aid

Listening to disabled people 255 retarded individuals to attempt, in lieu of being normal, to pass for normal. The desire to pass, in turn, could be essential to preparing the way for effective deinstitutionalization: “The ‘passing’ patient has a chance to adapt because he is trying to adapt”. This insight led Edgerton & Sabagh to take a positive, functionalist view of the “self-elevating flights of fancy” (inventing high IQ scores, pretending to be able to read and claiming great achievements) and the extreme touchiness about being patronized that they observed among institutionalized, mildly retarded people. When later the time came in COC to chart the course of the moral careers of deinstitutionalized people, Edgerton adopted a quite different line of argument. He now found these self-aggrandizing attitudes and behaviors not a positive force for adjustment, but rather examples of the pathos of the lives of unalterably deficient people, who, nonetheless, somehow (for Edgerton fails to explain this) understood enough about themselves to know the true nature of their condition5. Goffman had noted in Stigma that those bearing some deeply discrediting mark may attempt to deny it and pass for normal, or at least attempt to live a normal life as much as possible. But, he continued, the life of total concealment was difficult to sustain. “Minor failings or incidental impropriety” (Goffman, 1963, p. 15) not taken seriously in non-stigmatized people would always be interpreted in light of the presumed defects of those who were suspected of abnormality: all the more so, Edgerton might have reasoned, in the case of mentally retarded people in the community. Their deficiencies might lead them to betray themselves constantly, even as they worked their way through the arsenal of denying and passing behaviors that Goffman’s work catalogued. Edgerton’s book thus emerged as a Goffman-inspired analysis of denial, passing and the fear and reality of self-betrayal among the deinstitutionalized mentally retarded. For our purposes this analytical strategy has three especially significant implications. These serve to demonstrate the problems of merging Goffman’s interactionism with the study of those labeled ‘mentally retarded’, particularly when we impose on our analysis the refusal to question the validity of the label. First, in Goffman’s conception, passing is a complex learning behavior (1963, pp. 80–91) that requires individuals to master the normal point of view and to study the ways in which, according to it, one is disqualified from being considered normal. Then one must convincingly act normal. Simply as ordinary, daily behavior, passing requires trusting oneself to secrecy, knowing contextspecific behaviors, being attentive to aspects of social situations that threaten exposure, learning how to disclose compromising information and avoiding those, especially other stigmatized individuals, who may easily detect one’s masquerade and betray one’s identity. Goffman also identified a particularly artful tactic deployed in passing. Those attempting to pass, said Goffman, isolating one technique from the repertory of “information control” behaviors (Goffman, 1963, p. 91), coopt “just those individuals who would ordinarily constitute the greatest danger” to be parties to their act of concealment. They share their

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secret with those such as employers, neighbors and landlords who, through frequent interaction, would be likely to spot the masquerade (Goffman, 1963, p. 95). Now these are complicated behaviors, and by the point at which Edgerton’s deinstitutionalized people were observed in the full range of them, they had already been practicing them in the community for some years. COC, in fact, is filled with examples of these bold strategems—“cloaks of competence”, threadbare nonetheless to the trained observer, said Edgerton—by which problems of telling the time or reading bus schedules, for example, were surmounted in ways that preserved both self-esteem and the passing masquerade itself (Edgerton, 1967, pp. 157–168). One is moved to wonder how severely limited people could conceive of and practice, and probably not infrequently bring off, these feats of concealment? Indeed, passing seems evidence of learning capacity. One is left to wonder, too, what else, with access to the opportunity for formal education and training in social effectiveness, such people might have been capable of doing for themselves? One is also left to ponder another question such behavior suggests: at what point does successful passing become no longer a masquerade, but the basis of a newly authenticated self? These questions, unasked in COC, lurk disturbingly, just below the surface of the text. They strain against Edgerton’s assumption of the inherent limits of learning capacity, which is a consequence of accepting the ‘retardation’ of the sample as an unalterable condition. This tension manifests itself in the text in the author’s treatment of first-person testimonies by members of the sample. This leads us to consider the second of the implications of employing Goffman’s concept of the moral career. The individuals in Edgerton’s sample believe that their problems are not a consequence of retardation, but rather of oppressive social processes. Extensive quotes from their personal testimonies document this belief. For Goffman, the “sad tales” by which such individuals explain their circumstances are examples of the sort of denial the battered ego deploys to defend itself (Goffman, 1961, p. 153; 1963, p. 21). This was Edgerton’s view, too. COC sees denial as a necessary strand of the stitching of the cloaks in which people in the sample masquarade themselves. There is quite a difference, however, between denying that one is blind or deaf or disfigured, and denying that one is retarded. The former conditions are more or less facts because they have a physical nature, so to deny them is to engage in deception, of oneself and of others. The factuality of mental retardation is in many cases much more difficult to establish, and at the very point at which those labeled retarded are able to marshal creditable-sounding arguments to deny the validity of the label it is useful to question its relevance in their cases. The people in Edgerton’s sample do not deny their limitations, but they do seek, with considerable plausibility, to explain and to interpret them. What may be described as denial, therefore, becomes analysis, if we shift our viewpoint to accommodate them. We have first not merely to allow them to speak. We must listen to what they have to say.

Listening to disabled people 257 Let us review these testimonies. My point in doing so is not so much to prove that what Edgerton says about them—that they are unreliable representations of reality, and are instead verbalizations of a psychological process of denial (Edgerton, 1967, pp. 147–149, 169–170, 205–207)—is necessarily completely false. Rather the purpose is to demonstrate that another view—one that is closer to that of these individuals themselves—is possible. But it may only appear possible to us if we have attained enough skepticism about the validity of the label ‘mentally retarded’ in these cases to listen to alternative views, advanced by those who have had to bear the burden of the label. Though each expresses similar emotions of resentment, bitterness, shame and self-justification, two distinct types of testimonies (as opposed to incidental comments) are presented. Apologies are made for poor performance. These combine explanations of present deficiencies with rejections of the legitimacy in their individual cases of the mental retardation label and of institutionalization in which, with studied vagueness, they call “the colony”. Though Edgerton himself does not analyze this dissociative usage, it may be evidence, as he might have it, of denial or a linguistic adjustment necessitated by the effort to pass. It may, however, be reasonably interpreted as a device serving to dispel the extremely negative memories of the institution that these people share, feelings exacerbated, we are informed, especially in the case of the women, by the bitterness that came with learning that they had been sterilized (Edgerton, 1967, pp. 154–156). In the other type of testimony, complaints are voiced about stigmatization that establish feelings of horror at having shared a label and a home for years with severely retarded people. Representative of the former are these two statements. All my problems in making good on the outside is due to just one thing—I didn’t get no schooling at all in the colony. How can you make good without no schooling? (Edgerton, 1967, p. 170) I know I can’t talk as good as most people. Even my friends tell me I’m hard to understand but that don’t mean anything. That’s from being in colony so long. (Edgerton, 1967, p. 170) Of the latter, we have the following example. I don’t even want to think about that colony. Some of the people there was so odd, I don’t know why. And I used to wonder, God, if I stay here any longer I’m gonna turn out the same way. That used to scare me. When the doctor sent me [there], I guess he thought I was mentally unbalanced, but in my part I don’t think I was. Why does everything happen to me? Why did I have to go to that place? (Edgerton, 1967, p. 206)

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In COC these testimonies are not considered to comprise an analysis. Instead they are seen as rationalizations, the need for which demonstrates that denial and self-delusion are necessary if the damaged egos of the stigmatized are to be bolstered. “Self-knowledge of mental retardation”, we are told, “is totally unacceptable to these ex-patients. These persons cannot both believe that they are mentally retarded and still maintain their self-esteem” (Edgerton, 1967, p. 207). Thus, they create fictions that explain away their deficiencies. “By attributing their relative incompetence to the depriving experience of institutionalization, and by insisting that institutionalization itself was unjustified, the ex-patients have available an excuse that can and does sustain self-esteem in the face of constant challenges” (Edgerton, 1967, p. 170). The effect of such theorization is not only to cut off the enquiry from those sources that would demand that it make a stronger case for itself, but also ultimately to diminish the human personalities of these testifiers. That they should be taken seriously, on their own terms, is simply not considered. However we explain the origin of the difficulties these people were experiencing, it must be emphasized that the difficulties are real enough. Edgerton may be harsh in saying that these individuals with, to his mind, clumsy passing strategies and unalterable difficulties in thinking, are like the fairy tale emperor “who thought he was wearing the most elegant of garments, but in fact was wearing nothing at all” (Edgerton, 1967, p. 218). But there is no doubt that socially, economically and, especially, in their self-doubts and fears, psychologically, as COC establishes, they had problems adjusting to life in the community. What next becomes significant for us, therefore, is what they chose to do about these problems and the consequences of their choices for our efforts to evaluate the conceptualization of the book. This brings us to the third of the considerations prompted by Edgerton’s interpretation of these lives. Again, a slight shift in perspective leads to conclusions different from those drawn by COC. The need for such a shift becomes all the more necessary in the light of the follow-up research a decade later that prompted Edgerton to begin to rethink his ideas. As we have seen, Goffman found that stigmatized individuals who are attempting to pass will seek out a small number of normal people to whom to disclose their defects (when these are not visibly apparent), who will assist them in passing. These are usually people who would constitute a threat to the success of the masquerade, so they are recruited to help sustain it. For Edgerton, who closely follows Goffman here, such relationships are best understood as a “benevolent conspiracy”, between a retarded individual and a normal “benefactor” (Edgerton, 1967, pp. 172–204). A normal co-conspirator gives praise, moral support and practical instruction in acceptable social behavior to a retarded employee, tenant or neighbor, and thus helps sustain the masquerade. In contrast to Edgerton’s understanding, one may conceive of the propensity to form such relationships on the part of members of the sample as an example of a reasonable and rather canny effort to seek out surrogate relatives, parents and teachers for the purpose of acquiring a missing social education, on terms

Listening to disabled people 259 that are not humiliating, impersonal or unpredictable. By emphasizing selectively one aspect of these relationships, however, COC presents a picture that acknowledges neither the creative initiative represented by the inclination to form these relationships nor the potential of these relationships to aid the bringing about of a lasting, functional social adjustment. For Edgerton the significance of these relationships seemed psychological rather than social: though simultaneously they assist in the effort to live normally in the community, their main effect is that they function in a compensatory way, to bolster the self-confidence needed to pass. Institutions did little deliberately to assist these people to deal with the stigmatization that would inevitably be part of their lives in the community. Moreover, Edgerton maintains, in setting the analytical context for the policy considerations he contends are dictated by his findings, their disability is, after all, “basic and inclusive”, not merely “partial and intellectual” (Edgerton, 1967, p. 217). It is unalterable and touches every part of their lives. At the same time—somewhat contradictorily—they are aware of their “predicament”. They actually know themselves to be incompetent, abnormal people, whose cloaks of competence must always be “tattered and transparent” garments (Edgerton, 1967, p. 217). Their benefactors make them feel good about themselves in a situation in which they have little basis for self-worth. A humane normalization program, Edgerton deduced, has to recognize the crucial role of these informally chosen benefactors. This recognition became the central prescription for reformulating normalization that came out of the book’s analysis (Edgerton, 1967, pp. 193–204). Edgerton also argued that normalization programs must confront the terrible toll of stigmatization on the morale of deinstitutionalized people. He did not have in mind the combating of public prejudice and discrimination. Instead he advocated that institutionalized mentally retarded people be allowed greater freedom in forming and governing their peer groups, for their mutual interactions could provide them with a context for obtaining prestige and self-confidence that would help them to act as if they were normal after release (Edgerton, 1967, p. 214). Finally, he urged neutralization of the clinical terminology used to describe and classify mentally retarded people (Edgerton, 1967, p. 213), just as clinicians earlier had done away with such grossly demeaning terms as ‘imbecile’, ‘moron’ and ‘idiot’. The point is to lessen the influences that lend themselves to self-depreciation among those already bearing the burden of an unalterable disability and a discredited identity. Believing their condition could not be changed, Edgerton felt no need to speculate on the potential for personal growth revealed in the mentality that moved individuals to seek out the assistance of benefactors.6 Inevitably, then, he was destined to be surprised when, with Sylvia Bercovici, he returned to study the lives of some two-thirds (30) of his original sample, and found how well many of these same people were now doing in their normalized existence (Edgerton & Bercovici, 1976). Edgerton, and a number of experts he had consulted, made generally rather gloomy predictions about a number of these individuals on the basis of case-files and earlier research notes, before the research

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team re-established contact with them. Interviews now revealed that many of these 30 individuals were more self-confident and less personally dependent on benefactors than they had been in 1960–61. Moreover, most of them described themselves as being happier or just as happy as they were when originally studied. They were found to be enjoying rewarding lives, characterized by sustaining relationships, recreation and an active social life (Edgerton & Bercovici, 1976, pp. 486–488, 493). For Edgerton, another element of surprise was the contrast between the selfdescribed high quality of these lives and the employment situation of the vast majority. The ability to work had been the sole criterion agreed upon by institutional authorities for deciding which individuals were suitable for release from the hospital. Most of the original sample had seen work as essential to succeeding in what was then their new, normalized existence. Yet they often left the work-force and remained contentedly jobless. Women who quit work to marry were the first to give up jobs, and others did so because of aging, illness and, in a deteriorating economy, the dearth of the sort of low-skill jobs that represented all that their institutional lives had prepared them to do. By 1972–73, only 7 men and one woman were still employed, while those who were unable to work, and the others who either could not find employment or had given up looking, were contentedly living on public unemployment or disability benefits. They were unapologetic about receiving social assistance, probably because they had once worked, but also because they believed so many years had unfairly been taken from them as a consequence of institutionalization. Self-confidence and personal independence amidst reliance on welfare payments seemed to suggest a new, complex and contradictory reality in these lives that the experts had not been prepared to anticipate (Edgerton & Bercovici, 1976, pp. 487–494). Edgerton was now convinced of the need to rethink some of his earlier assumptions, and he proceeded along lines that placed him at odds with the dominant mental retardation paradigm. He now saw the error of having begun the follow-up research by plotting out individual possibilities for a successful normalized existence along a continuum largely defined by such elements of bourgeois ideology as socio-economic competence. Out of work and dependent on the welfare state, these people were nonetheless confident, happy and, with the aid of their government checks, quite able to go out into the world to attend to their daily needs. Moreover, that their own criteria for appraising their lives apparently diverged rather sharply from those of retardation specialists suggested the need to question the ability of the latter to assess and improve the lives of the former (Edgerton & Bercovici, 1976, pp. 494–496). Just as perplexing was the neat fit between these marginated people’s assessments of their lives in the community and the changing civic culture of mainstream America. Edgerton correctly perceived that the 1960s had witnessed a deterioration of traditional social values in the USA such that the moral burden once attached to receiving social assistance had greatly lessened. Growing numbers of US citizens were not only willing to enjoy, but increasingly felt a sense of entitlement to, the benefits of a welfare state that was vastly expanded

Listening to disabled people 261 during the prosperous quarter of a century after World War II (Edgerton & Bercovici, 1976, pp. 491, 492–493, 495). By virtue of a changing historical context and, on the part of the retarded themselves, without a great deal of the type of deliberate effort necessitated by, say, passing, these people had become more American—or, perhaps, the American people had become more like retarded people. Either way, the question of who and what should be considered normal now seemed a great deal more complex than it had at the time of Edgerton’s initial research. From such points of dissonance between professional expectations and the patterns of these lives, Edgerton drew two significant conclusions. Researchers needed to realize that retarded people had their own coherent perspectives. Also, retarded people lived in changing, larger contexts, beyond the institutional world of state institutions and professional custodians. These changing contexts asserted their own dynamic influences, which not only made predictions about the adjustment of the retarded difficult, but created situations in which retarded people’s own perspectives seemed to provide a sound basis for social effectiveness. Under these circumstances, Edgerton asked, raising a particularly discomforting question for retardation professionals, “whose assessment of success . . . ours or theirs” were the experts to use when they “plan programs and design research relating to community adjustment” (Edgerton & Bercovici, 1976, p. 496)? But Edgerton did not feel confident enough at the time to confront this issue, which certainly must be the sine qua non for all professionals who would offer systematic, long-term assistance to others. Instead he deferred the matter of ascertaining the principles by which appropriate therapeutics were to be determined pending still more research on the lives of the deinstitutionalized mentally retarded (Edgerton & Bercovici, 1976, p. 496). He thus left those readers who knew the earlier study wondering whether he still believed appropriate the programmatic suggestions about benefactors and clinical terminology made in COC. The difficulty here was that though so many pillars of his understanding of mental retardation were collapsing, he was still unable to take the radical but logical step that his research seemed to dictate: questioning the usefulness for understanding these lives and the lives of other ‘mildly mentally retarded people’ of the concept of mental retardation. Edgerton’s discovery of the relevance of the larger socio-historical context was only partial. It afforded him a more open-minded view of the possibility that people labeled ‘retarded’, guided by their own aspirations and choices, could escape feelings of stigmatization and marginality and blend into the community. But it did not lead him to investigate systematically just how greatly the concept of mental retardation itself is a socio-historical construction. (He raised this question subsequently in articles that sought to look in a general way at the issue of competence cross-culturally, but his answers, as Luckin (1986) notes, have been far from conclusive; and he has not yet taken it up in ethnographic research with samples of individuals.) Unwilling to question the concept of mental retardation, he was still unable

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to accept completely the agency of these people in creating new lives for themselves, lives which, while hardly without difficulty, seem no more difficult, and indeed seem much like, those of millions of American working-class people who have never been labeled mentally retarded. And, unable to accept the possibility that they were capable of constructive personal agency and continuous growth, he was not ready to go back to their earlier testimonies to look for evidence to explain how, within the framework of options available to them, they had remade their lives on the basis of their own views of their situations and their own aspirations and purposeful activities. If questioned on the matter, he might have retained a belief in the need for the confidence-sustaining benefactor. But if we were to accept that these people had made their lives quite liveable and even rather pleasant by the time of the follow-up study, we would have to come to different, more radical conclusions. We would not do away with the offer of assistance. But we would propose a different sort of benefactor, whose role would not be to patronize defectives and preserve pretensions to normality in the abnormal. Rather, we would conclude that normalization could be accomplished with less difficulty if benefactors carved out another purpose for themselves. Because of years of neglect, poverty and powerlessness, people such as those studied by Edgerton do need help. But the extension of help should proceed from an understanding that differences are not necessarily defects and that those needing assistance have the potential to think and to act independently. Helpers should be obliged to listen to their ideas, respect the aspirations they voice and aid them in practical ways to attain whatever reasonable ends they seek (Kurtz, 1975; Brechin & Swain, 1988; Lea, 1988). Then competence may well be able to emerge naturally, from within individuals whose potentials and resilience they themselves perhaps always best understood.

Notes 1 The use of “voice” in the singular in this essay is not intended to carry the notion that there is a unanimity of opinion among people with disabilities. Instead I mean to suggest that people with disabilities, in all their diversity of views, have demanded and been granted legitimacy as testifiers and as experts in the ongoing public discussion of matters concerning disability that are vital to their lives. To have a “voice” in this formulation is to be acknowledged as a legitimate participant by others involved in the discussion. 2 Edgerton (1975) is illustrative of this transition in the development of his work. It combined ethnographic methods undertaken with a large sample (a third of which was taken from the original COC sample) with brief, and rather tentative, cross-cultural remarks. Its transitional status is best suggested by Edgerton’s statement (pp. 139–140), “I have come to realize that there is far more to mentally retarded persons than I previously realized. My own writing about mentally retarded persons does not seem wrong to me; it is simply unfinished”. Most recently, Edgerton has turned his attention to analysis of the social and psychological consequences of the labeling process through the study of the life of a borderline retarded man who was delabeled by bureaucratic fiat: see Edgerton (1986). 3 This succinct and articulate passage could serve to summarize much of what we have

Listening to disabled people 263 come to believe about the usefulness of IQ tests in determining mental retardation . . . The relative competence of these [i.e. mentally retarded] persons is judged by social and cultural criteria. It is therefore the case that changes in social and cultural criteria, and thus in IQ performance, would shift numbers of persons either out of, or into, the range of mild mental retardation. Furthermore it is the case that changes in social and cultural conditions, especially as they effect early experience, might alter the adult IQs of large numbers of persons. In short, most mental retardation is mild mental retardation, and mild mental retardation is a social phenomenon through and through. (p. 6) 4 In defense of his use of IQ test scores, he states, “. . . Few practitioners would defend IQ tests as perfect devices for determining who is or is not retarded”. But, he continues, “the essential point here is that despite the recognized imperfections of IQ tests, virtually all diagnoses of mental retardation rely upon these tests. Indeed, legal statutes often require such testing. IQ is the operational tool, and both medical and legal terminologies and classifications of mental retardation are based upon discriminations in IQ” (p. 4). His analytical compromise in the matter of IQ is stated even more frankly several pages later in discussing the logic by which he included 13 people with IQ over 70 in the COC sample. “. . . Since they were formally institutionalized for mental retardation, and were defined as such, they were retained in the cohort” (p. 11). 5 Robert A. Scott raised the issue of the logic of this aspect of Edgerton’s argument in his review of COC (Scott, 1968). Scott noted, “We might well ask how people who are so intellectually impaired can be so perceptive and clever. Perhaps the answer is that there are different kinds of intelligence, that mental retardation is an impairment of only some and not all cognitive processes”. If so, Scott continued, mental retardation is indeed a “cruel condition”, for “those who possess it remain intimately alive to the scorn and ridicule that befalls them”. These conjectures, however, do not bring us very far in thinking about mental retardation. If mental retardation is an impairment that affects the sort of learning that is key to social functioning, and if the people in Edgerton’s sample have the capacity for the type of acute insights into how others perceive them that are essential to social functioning, then it is difficult to conceive how positing different types of intelligence is going to resolve the problem of the relationship between behavior and intelligence. 6 The dynamic, positive potential in these relationships between benefactors and mentally retarded individuals has recently been explored by Taylor & Bogdan (1989).

References American Indian Program, Cornel University (1988) Indian Roots of American Democracy (Ithaca, NY, American Indian Program, Cornell University). Angell, Robert (1936) The Family Encounters The Depression (New York, Scribners). Asante, Molefi & Vandi, Abdulai S. (Eds) (1980) Contemporary Black Thought: alternative analysis in social and behavioral science (Beverly Hills, CA, Sage Publications). Anon. (1968) Review of The Cloak of Competence: stigma in the lives of the mentally retarded, Mental Retardation, 6, p. 51. Bakke, Wright (1940) Citizens without Work (New Haven, CT, Yale University Press). Begab, Michael J. (1975) The mentally retarded and society: trends and issues, in: M. J. Begab & S. A. Richardson (Eds) The Mentally Retarded and Society: a social science perspective, pp. 127–140 (Baltimore, MD, University Park Press).

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Bell, Daniel (1960) The End of Ideology: on the exhaustion of political ideas in the fifties (New York, The Free Press). Bogdan, Robert & Taylor, Steven (1976) The judged, not the judges: an insider’s view of mental retardation, American Psychologist, 31, pp. 47–52. Bowe, Frank (1978) Handicapping America: barriers to disabled people (New York, Harper & Row). Braginsky, D.B. & Braginsky, B.M. (1971) Hansels and Gretels: studies of children in institutions for the mentally retarded (New York, Holt, Rinehart & Winston). Brechin, Ann & Swain, John (1988) Professional/client relationships: creating a ‘working alliance’ with people with learning difficulties, Disability, Handicap & Society, 3, pp. 213–224. Browne, Susan, Connors, Deborah & Stern, Nanci (Eds) (1985) With The Power of Each Breath: a disabled women’s anthology (Pittsburgh, PA, Cleis Press). Cowan, Ruth Schole & Ranck, K. Howland (1938) The Family and The Depression (Freeport, NY, Books for Libraries). Cowan, Ruth Schwartz (1976) Two washes in the morning and a bridge party at night: the American housewife between the wars, Women’s Studies, 3, pp. 147–171. Davis, Maxine (1936) The Lost Generation: a portrait of American youth today (New York, Macmillan). DeJong, Gerben (1979) The Movement for Independent Living: origins, ideology, and implications for disability research (East Lansing, MI, State University Center for International Rehabilitation). Deloria, Vine (1973) God Is Read (New York, Grosset & Dunlap). DuBois, Ellen, Carol, Kelly, Gail, Elizabeth, Korsmeyer, Carolyn & Robinson, Lillian (1985) Feminist Scholarship: kindling in the groves of academe (Champaign, IL, University of Illinois Press). Eckberg, Douglas Lee (1979) Intelligence and Race: the origins and dimensions of a controversy (New York, Praeger). Ecker, Gisela (Ed.) (1986) Feminist Aesthetics (Boston, MA, Beacon Press). Edgerton, Robert B. (1967) The Cloak of Competence: stigma in the lives of the mentally retarded (Berkeley, CA, University of California Press). Edgerton, Robert B. (1968) Anthropology and mental retardation: a plea for the comparative study of incompetence, in: H. J. Prehm, L. Hamerlynck & J. Crosson (Eds) Behavioral Research in Mental Retardation (Eugene, OR, Rehabilitation and Training Center in Mental Retardation). Edgerton, Robert B. (1970) Mental retardation in non-Western societies: toward a crosscultural perspective on incompetence, in: H. Carl Haywood (Ed.) Socio-cultural Aspects of Mental Retardation (New York, Appleton, Century Crofts). Edgerton, Robert B. (1975) Issues relating to the quality of life among mentally retarded persons, in: M. J. Begab & S. A. Richardson (Eds) The Mentally Retarded and Society: a social science perspective (Baltimore, MD, University Park Press). Edgerton, Robert B. (1979) Mental Retardation (Cambridge, MA, Harvard University Press). Edgerton, Robert B. (1986) A case of delabeling: some practical and theoretic implications, in: L.L. Langness & Harold G. Levine (Eds) Culture and Retardation: life histories of mildly mentally retarded persons in American society (Dordrecht, D. Reidel). Edgerton, Robert B. & Sabagh, Georges (1962) From mortification to aggrandizement: changing self-conceptions in the careers of the mentally retarded, Psychiatry: journal for the study of interpersonal processes, 25, pp. 263–272.

Listening to disabled people 265 Edgerton, Robert B. & Bercovici, Sylvia (1976) The cloak of competence: years later, American Journal of Mental Deficiency, 80, pp. 485–497. Gates, Henry Lois (1984) Black Literature and Literary Theory (New York, Methuen). Gladwin, Thomas (1968) Review of The Cloak of Competence: stigma in the lives of the mentally retarded, American Anthropologist, 70, pp. 618–620. Goffman, Erving (1959) The moral career of the mental patient, Psychiatry: journal for the study of interpersonal processes, 22, pp. 123–142. Goffman, Erving (1961) Asylums: essays on the social situation of mental patients and other inmates (Garden City, NY, Doubleday). Goffman, Erving (1963) Stigma: notes on the management of spoiled identity (Englewood Cliffs, NJ, Prentice-Hall). Gouldner, Alvin W. (1970) The Coming Crisis of Western Sociology (New York, Avon Books). Gouldner, Alvin W. & Peterson, Richard A. (1962) Technology and The Moral Order (Indianapolis, IN, Bobbs-Merrill). Heckel, Robert V. (1968) Review of The Cloak of Competence: stigma in the lives of the mentally retarded, Mental Hygiene, 52, p. 313. Kleck, Robert E. (1975) Issues in social effectiveness: the case of mental retardation, in: M. J. Begab & S. A. Richardson (Eds) The Mentally Retarded and Society: a social science perspective, pp. 181–195 (Baltimore, MD, University Park Press). Komerovsky, Mirra (1940) The Unemployed Man and His Family (New York, Institute for Social Research). Kurtz, Richard A. (1975) Advocacy for the mentally retarded: the development of a new social role, in: M. J. Begab & S. A. Richardson (Eds) The Mentally Retarded and Society: a social science perspective, pp. 381–392 (Baltimore, MD, University Park Press). Lea, Susan J. (1988) Mental retardation: social construction or clinical reality, Disability, Handicap & Society, 3, pp. 63–69. Luckin, Bill (1986) Time, place and competence: society and history in the writings of Robert B. Edgerton, Disability Handicap & Society, 1, pp. 89–102. Manion, Mary L. & Bersani, Hank A. (1987) Mental retardation as a Western sociological construct: a cross-cultural analysis, Disability, Handicap & Society, 2, pp. 231–248. Mercer, Jane R. (1973) Labeling the Mentally Retarded: clinical and social perspectives on mental retardation (Berkeley, CA, University of California Press). Mills, C. Wright (1959) The Sociological Imagination (New York, Oxford University Press). Scotch, Richard K. (1984) From Good Will to Civil Rights: transforming federal disability policy (Philadelphia, PA, Temple University Press). Scott, Robert A. (1968) Review of The Cloak of Competence: stigma in the lives of the mentally retarded, American Sociological Review, 33, pp. 1006–1007. Sennett, Richard (1973) Two on the aisle, New York Review of Books, 1 November, pp. 29–32. Snyderman, Mark & Rothman, Stanley (1988) The IQ Controversy, The Media, and Public Policy (New Brunswick, NJ, Transaction). Spender, Dale (Ed.) (1981) Men’s Studies Modified: the impact of feminism on the academic disciplines (Oxford, Pergamon). Taylor, Stephen & Bogdan, Robert (1989) On accepting relationships between people with mental retardation and non-disabled people: towards an understanding of acceptance, Disability, Handicap & Society, 4, pp. 32–34.

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Williams, Paul & Shoultz, Bonnie (1982) We Can Speak for Ourselves: self-advocacy by mentally handicapped people (London, Souvenir Press). Whyte, William Foote (1956) The Organization Man (New York, Simon & Schuster). Zelizer, Vviana A. (1985) Pricing the Priceless Child: the changing social value of children (New York, Basic Books). Zola, Irving Kenneth (1982) Missing Pieces: chronicle of living with a disability (Philadelphia, PA, Temple University Press).

16 Changing the social relations of research production? Mike Oliver Professor of Disability Studies, Thames Polytechnic

Abstract This paper will argue that research on disability has had little influence on policy and made no contribution to improving the lives of disabled people. In fact, up to now the process of research production has been alienating both for disabled people and for researchers themselves. Neither positivist nor interpretive paradigms are immune from the characterisation of research as alienation, and hence it is suggested that the only way to produce unalienated research is to change the social relations of research production. This change will require the development of an emancipatory research paradigm and both the development of and agenda for such a paradigm are briefly considered.

Introduction Disability cannot be abstracted from the social world which produces it; it does not exist outside the social structures in which it is located and independent of the meanings given to it. In other words, disability is socially produced. In the past 100 years or so, industrial societies have produced disability first as a medical problem requiring medical intervention and second as a social problem requiring social provision. Research, on the whole, has operated within these frameworks and sought to classify, clarify, map and measure their dimensions. The late twentieth century has seen a crisis develop in these productions of disability because disabled people have recognised the medical and individual ideologies underpinning them. What is more, having done so, they are now engaged in a struggle to produce disability as social oppression. As this struggle continues and disabled people grow in strength, the crisis in disability production will deepen and researchers will be forced to answer the question Howard Becker posed 30 years ago: whose side are you on? Such are the fundamentals with which we are now dealing. Returning to the question Becker posed all those years ago is apt, for the book in which he posed it was called Outsiders. More recently and in another context Chambers (1983) talks about researchers as outsiders. He talks about the way academic researchers of all methodological persuasions have consistently misunderstood and distorted both the phenomenon of rural poverty and

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the experiences of the rural poor in the third world. His critique of what he calls ‘rural development tourism’ in many respects mirrors the critique of disability research provided by disabled people. If research in two such disparate areas as rural poverty in the third world and disability in late capitalist society can be attacked on the same grounds, then the problems inherent in such research cannot be reduced to narrow methodological or technical issues. What is more, black people (Bourne, 1981) and women (Maguire, 1987) have provided similar critiques of race and gender research indicating that the problems inherent in such research are widespread. It is to what can only be called the social relations of research production that the failures of such research can be attributed, and indeed, it is to these very social relations that attention must be focused if research, in whatever area, is to become more useful and relevant in the future than it has been in the past. The social relations of research production provides the structure within which research is undertaken. These social relations are built upon a firm distinction between the researcher and the researched; upon the belief that it is the researchers who have specialist knowledge and skills; and that it is they who should decide what topics should be researched and be in control of the whole process of research production. To leave these social relations of research production unchallenged is to leave the task of setting a research agenda for the 1990s in the hands of these experts. The very idea that small groups of ‘experts’ can get together and set a research agenda for disability is, again, fundamentally flawed. Such an idea is the product of a society which has a positivistic consciousness and a hierarchical social structure which accords experts an elite role. Agenda setting, whether it be in politics, policy-making or service provision, is part of a process of struggle and this is equally true of agenda setting in disability research. Disability research should not be seen as a set of technical, objective procedures carried out by experts but part of the struggle by disabled people to challenge the oppression they currently experience in their daily lives. Hence the major issue on the research agenda for the 1990s should be; do researchers wish to join with disabled people and use their expertise and skills in their struggles against oppression or do they wish to continue to use these skills and expertise in ways in which disabled people find oppressive? This leads to the final fundamental issue which will be addressed in this paper—the potential and significance of disability research under a different set of social relations of research production. In order to fully grasp this potential significance, my paper will locate the discussion historically, considering both the history of research generally and how disability research relates to this history, for any understanding that is not historically grounded can only be partial. The history of research will be discussed utilising a three stage historical schema as follows: the positivist stage, the interpretive stage and the emancipatory stage. This schema will then be used to discuss the history, development and future of disability research specifically.

The social relations of research production 269 Before discussing the history of research in any detail, however, it is necessary to provide some commentary on the contemporary ‘state’ of research in general and disability research in particular. There have been numerous attempts in recent years to consider the value and importance of social research (Bulmer, 1981; Kallen, 1982; Shotland & Mark, 1985; Finch, 1986; Heller, 1986; Wenger, 1987) with almost as many differing conclusions. For present purposes, in the following section, one such conclusion will be discussed; that of research as alienation. At this point however, it is important emphasise that while much of the paper will be critical of research, it is nonetheless based upon the belief that social research has much to contribute to improving the quality of life for everyone in late capitalist society. That it has not done so, so far, is not because social research has little to offer, but because the social relations of research production have resulted in the production of distorted findings which have been irrelevant to the policy process. Changing the social relations of research production will, at least, offer the possibility of developing a social research enterprise which is relevant to, and significant in, the lives of those people who are the subjects of this enterprise.

Research as alienation The term alienation in its original Marxist sense referred to the process of labour whereby workers became estranged from the products they produced. In a powerful critique of most of what passes for social research, Rowan (1981) argues that alienation is the outcome of the process of this research. By this he meant . . . treating people as fragments. This is usually done by putting a person into the role of ‘research subject’ and only then permitting a very restricted range of behaviour to be counted. This is alienating because it is using the person for someone else’s ends—the person’s actions do not belong to that individual, but to the researcher and the research plan. (Rowan, 1981, p. 93) For him, almost all social research has been alienating and alienation in all the four forms suggested by Marx are usually present; from the product of research, from the process itself, from other research subjects and, finally, from self. The recent history of disability research, in Great Britain at least, can certainly be seen in the terms that Rowan (1981) describes above. The national disability survey undertaken by the Office of Population Censuses and Surveys (OPCS) on behalf of the British Government is a good example of such alienation. Since the publication of the findings of this research (Martin et al., 1988; Martin & White, 1988), despite promises to the contrary, the Government has failed to take any coherent policy initiatives based upon it. OPCS has not taken it further, considering that they have done what they were contracted to do. Disabled people and

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their organisations have either ignored it or disputed both its reliability and validity (DIG, 1988; Disability Alliance, 1988; Abberley, 1991). Much of this was predictable in advance because of the alienation of disabled people from the process of research. They were not consulted about the research in advance; what issues should be investigated, how the research should be carried out and so on. Because of this the questions asked in the survey clearly locate the ‘problems’ of disability within the individual. (See Table 16.1 for a sample of these questions.) It would have been equally possible to have asked questions which located the problems of disability elsewhere. (See Table 16.2 for a sample of alternative questions.) Further, in Rowan’s terms, the researchers and the researched were alienated from each other in the way the research was carried out. Disabled people either filled in a postal questionnaire or were interviewed, not by the principal OPCS workers but by part-time interviewers. Further, as I have pointed out elsewhere, It is in the nature of the interview process that the interviewer presents as expert and the disabled person as an isolated individual inexperienced in research, and thus unable to reformulate the questions in a more appropriate way. It is hardly surprising that, by the end of the interview, the disabled person has come to believe that his or her problems are caused by their own health/disability problems rather than by the organisation of society. It is in this sense that the process of the interview is oppressive, reinforcing onto isolated, individual disabled people the idea that the problems they experience in everyday living are a direct result of their own personal inadequacies or functional limitations. (Oliver, 1990, p. 8) Table 16.1 Survey of disabled adults—OPCS, 1986 Can you tell me what is wrong with you? What complaint causes your difficulty in holding, gripping or turning things? Are your difficulties in understanding people mainly due to a hearing problem? Do you have a scar, blemish or deformity which limits your daily activities? Have you attended a special school because of a long-term health problem or disability? Does your health problem/disability mean that you need to live with relatives or someone else who can help look after you? Did you move here because of your health problem/disability? How difficult is it for you to get about your immediate neighbourbood on your own? Does your health problem/disability prevent you from going out as often or as far as you would like? Does your health problem/disability make it difficult for you to travel by bus? Does your health problem/disability affect your work in any way at present?

The social relations of research production 271 Table 16.2 Alternative questions Can you tell me what is wrong with society? What defects in the design of everyday equipment like jars, bottles and tins cause you difficulty in holding, gripping or turning them? Are your difficulties in understanding people mainly due to their inabilities to communicate with you? Do other people’s reactions to any scar, blemish or deformity you may have, limit your daily activities? Have you attended a special school because of your education authority’s policy of sending people with your health problem or disability to such places? Are community services so poor that you need to rely on relatives or someone else to provide you with the right level of personal assistance? What inadequacies in your housing caused you to move here? What are the environmental constraints which make it difficult for you to get about in your immediate neighbourhood? Are there any transport or financial problems which prevent you from going out as often or as far as you would like? Do poorly-designed buses make it difficult for someone with your health problem/disability to use them? Do you have problems at work because of the physical environment or the attitudes of others?

Hence the research experience for all concerned was an isolating, individual one reinforcing the dominant idea of disability as an individual problem. Finally, according to Abberley (1991) it attempted to “depoliticise the unavoidably political, to examine the complex and subtle through crude and simplistic measures”. This alienation from the most extensive and most expensive disability research ever carried out in Britain is not simply an isolated example but symptomatic of a wider crisis that exists between disabled people and the research community. As disabled people have increasingly analysed their segregation, inequality and poverty in terms of discrimination and oppression, research has been seen as part of the problem rather than as part of the solution (Oliver, 1987). Disabled people have come to see research as a violation of their experience, as irrelevant to their needs and as failing to improve their material circumstances and quality of life. This wider crisis is not something which just affects disabled people for as Chambers (1983, p. 53) reflects in relation to research on rural poverty. Much of the material remains unprocessed, or if processed, unanalyzed, or if analyzed, not written up, or if written up, not read, or if read, not remembered, or if remembered, not used or acted upon. Only a minuscule proportion, if any, of the findings affect policy and they are usually a few

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Other (oppressed) groups feel exactly the same (Bourne, 1981; Roberts, 1981). Women, for example, have been advised by Finch (1986) to protect themselves from people like her and black people have been advised to tell researchers to ‘fuck off’ (Jenkins, 1971). Similarly, disabled people have been advised not to partake in research that does not fully involve them from the outset on the grounds of ‘no participation without representation’ (Finkelstein, 1985). Hence, in order to understand the crisis in disability research, it is necessary to understand the wider research crisis and how this has developed historically. This will be the subject of the next section.

History of research Up until now, there is no doubt that social research has been dominated by positivism. This positivist paradigm has built into a number of assumptions about the nature of the social world and appropriate methods for investigating it. These assumptions consist of the following; a belief that the social world can be studied in the same way as the natural world—that there is a unity of method between the natural and social sciences; that the study of the social world can be value-free; that, ultimately explanations of a causal nature can be provided; and that the knowledge obtained from such research is independent of the assumptions underpinning it and the methods used to obtain it. Each and all of these assumptions have been questioned over the years, not just in the social sciences (Cicourel, 1964; Giddens, 1979; Hindness, 1980) but in the natural sciences as well (Kuhn, 1961, Popper, 1972). This has given rise to what is almost a new orthodoxy, within the social sciences at least, which suggests that all knowledge is socially constructed and a product of the particular historical context within which it is located. This view of knowledge has spawned a new social research paradigm often referred to as the interpretive or qualitative paradigm. The assumptions underpinning this are very different from those of the positivist paradigm; that there can be no unity of method for the social world is a meaningful place, a world full of active subjects not passive objects; that research should attempt to understand the meaning of events, not their causes; and that research is a product of the values of researchers and cannot be independent of them. This new paradigm, itself been subject to much criticism, naturally from positivist researchers but also from others; critical theorists, Marxists, methodological anarchists and most importantly, the active subjects of this research. There is not the space to reproduce the debates with positivists nor to repeat the snipings of a ragbag of remote theorists. However, when one of the classic works in interpretive research, Robert Edgerton’s The Cloak of Competence,

The social relations of research production 273 which influenced a whole generation, is accused of serving “to deny members of his sample a voice with which to speak authoritatively about their own situation” (Gerber, 1990, p. 3), clearly all is not well within the paradigm. Far more important than academic disputes, however, is the critique which has emerged from active research subjects who have argued that while the interpretive paradigm has changed the rules, in reality it has not changed the game. Interpretive research still has a relatively small group of powerful experts doing work on a larger number of relatively powerless research subjects. To put the matter succinctly, interpretive research is just as alienating as positivist research because what might be called ‘the social relations of research production’ have not changed one iota. Not only that but the defects of both positivist and interpretive approaches merely reinforce one another. The positivist approach, by ignoring how . . . problems are always preinterpreted, effectively eliminates their . . . character; the interpretive approach, by insulating the self-understanding of practitioners from direct, concrete and practical criticism, effectively eliminates their problematic character. (Carr & Kemmis, 1986, p. 215) As a consequence of this situation, there have been calls to develop another paradigm for social research—what has variously been called critical enquiry, praxis or emancipatory research. This, even newer paradigm has a very different view of knowledge (theory) which must . . . illuminate the lived experiences of progressive social groups; it must also be illuminated by their struggles. Theory adequate to the task of changing the world must be open-ended, nondogmatic, informing, and grounded in the circumstances of everyday life. (Lather, 1987, p. 262) Not only that but the social relations of research production also must fundamentally change so that both researcher and researched become changers and changed (Lather, 1987). Finally, of course, the methodology of research must also change building upon trust and respect and building in participation and reciprocity. It is possible to see the development of positivist, interpretive and emancipatory research paradigms as a historically located sequence and the next section will discuss disability research in precisely this way. It is also possible to provide models which link these paradigms to the policy making process; engineering, enlightenment and struggle approaches. Finally each of these paradigms and their linked policy models are underpinned by particular views of the nature of disability; as an individual, a social and a political problem (see Figure 16.1).

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Figure 16.1 Social research and social policy.

However, it should be pointed out that this historically located sequence is not a fixed and absolute series of developmental stages but rather a set of trends. All three paradigms, their related policy models and their views of disability may exist at any one time and currently do; the dominance of the positivist paradigm has been challenged by the interpretive one in the last twenty years with emancipatory research currently emerging if not to challenge, then at least to question some of the assumptions of the other two.

Disability research The history of research on disability is undoubtedly one that has been dominated by the positivist research paradigm both in terms of the research

The social relations of research production 275 undertaken (Harris, 1971; Martin et al., 1988), and the assumptions underpinning it (Wood, 1980). There are two major problems with this domination; first that the experience of disability has been profoundly distorted; and secondly, the links between research and social change have been seen as relatively simplistic and rational, adopting a social engineering approach to the policy making process. These have caused major problems which need further discussion. Unfortunately disability research has been unable to shake off the methodological individualism inherent in positivist social research of all kinds, which has been defined as follows: Methodological individualism is a doctrine about explanation which asserts that all attempts to explain social (or individual) phenomena are to be rejected (or, according to a current, more sophisticated version, rejected as ‘rock-bottom’ explanations) unless they are couched wholly in terms of facts about individuals. (Lukes, 1972, p. 110) Disability research, therefore, has reinforced the individual model of disability (Oliver, 1983) seeing the problems that disabled people face as being caused by their individual impairments. These rock-bottom explanations not only see disability as an individual problem but in so doing they reject other possible explanations. Methodological individualism is thus an exclusivist, prescriptive doctrine about what explanations are to look like . . . it excludes explanations which appeal to social forces, structural features of society, institutional factors and so on. (Lukes, 1972, p. 122) Hence they fail to accord with disabled people’s own explanations of the problems of disability which argue that these are caused by society; by the social restrictions it imposes and by its failure to acknowledge, let alone attempt to meet, the self-defined needs of disabled people (UPIAS, 1975). The second problem that positivist research poses is that it assumes that the relationship between research findings and policy change is non-problematic. Given the facts, government will act and changes will occur for the better. This has been called ‘the social engineering approach’ and has been widely criticised both for its epistemological assumptions and for its failure to produce social change in the manner prescribed (Bulmer, 1981; Finch, 1986). Again this is certainly true of the lack of effect that this approach has had in the area of disability policy (Borsay, 1986a; Oliver, 1986). For example, a sustained and extensive campaign for a national disability income over the last twenty years (DIG, 1989; Disability Alliance, 1989) has been based precisely on this approach;—countless studies have demonstrated

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the numbers and extent of poverty amongst disabled people to the point where everyone, including the Government, agrees with the evidence. Yet a national disability income is no nearer than it was when the campaign began over 20 years ago. This failure then, can only be explained in terms of the inappropriateness of the social engineering model as an explanation of policy change in general and disability policy in particular (Oliver & Zarb, 1989). There have been some attempts in recent years to undertake disability research within the interpretive paradigm (Blaxter, 1980; Borsay, 1986b; Oliver et al., 1988) and while this has attempted to take the meaning of disability for disabled people themselves seriously, it has still been subject to criticisms. These criticisms centre, in the main, around the failure of this kind of work also to have any serious effect on services for disabled people and their quality of life. Again it is possible to identify two main reasons for this; firstly, such research does not fundamentally alter the social relations of research production and not for nothing has this kind of research been called in another context “the rape model of research” (Reinharz, 1985) in that researchers have benefitted by taking the experience of disability, rendering a faithful account of it and then moving on to better things while the disabled subjects remain in exactly the same social situation they did before the research began. A second criticism stems from the model of the policy making process that the interpretive paradigm presupposes; what is usually called the enlightenment model. This argues that there is no direct and explicit link between research and policy making but what research does instead is that it informs the policy making process; it provides a backdrop against which policy makers make decisions; it helps them to decide what questions to ask rather than to provide specific answers; and so on. This is all very well but it offers little in the way of immediate improvements in the material conditions of life for the disabled research subjects and again raises the issue of whether or not to participate in such research. This disillusion with both the positivist and interpretive research paradigms has raised the issue of developing an emancipatory paradigm in order to make disability research more relevant to the lives of disabled people. The next section will consider what such a paradigm might look like in general before discussing its potential for disabled people.

Emancipatory research—another new paradigm? The development of such a paradigm stems from the gradual rejection of the positivist view of social research as the pursuit of absolute knowledge through the scientific method and the gradual disillusionment with the interpretive view of such research as the generation of socially useful knowledge within particular historical and social contexts. The emancipatory paradigm, as the name implies, is about the facilitating of a politics of the possible by confronting social oppression at whatever levels it occurs. Central to the project is a recognition of and confrontation with power which structures the social relations of research production. To put it bluntly,

The social relations of research production 277 research has been and essentially still is, an activity carried out by those who have power upon those who do not. Some 30 years ago much sociological research was criticised for its underdog mentality (Gouldner, 1975) and caricatured as being the “sociology of nuts, sluts and perverts” (Liazos, 1972). Such criticisms apply with equal force today; people who are poor, unemployed, mentally ill, women, black people, disabled people and children are all frequently studied. In comparison research has uncovered little about the lives and activities of psychiatrists, bank managers, policemen, politicians, policy makers, political terrorists, captains of industry or even researchers themselves. As one policy researcher has put it . . . the powerful are so rarely studied because they have the resources to protect themselves from scrutiny. (Taylor, 1985, p. 152) However the importance of the emancipatory research paradigm is not attempts it might make to study the other end of existing power relations but to attempts it might make to challenge them. Such challenges are unlikely to be funded by institutions located within existing power structures and one suggested solution is to take money for studying one thing but then to shift the focus once the research has begun “from victim to victimiser, from the powerless to the powerful” (Jenkins, quoted in Wenger, 1987, p. 157). Not all researchers, even those committed to developing an emancipatory paradigm, would find such an approach acceptable arguing that taking money for one thing and then doing something else is not only unethical but dangerous in the consequences it may have for the researcher, the discipline, the institution and the research community. For example, it is debateable whether the benefits and practical implications of the research by Cohen & Taylor (1972) on long-term imprisonment outweighed the damage done to relations between the Home Office and the research community because of the deceitful basis on which they gathered their data. However, the development of an emancipatory paradigm is not simply about confrontation with or accommodation to the power structures which fund and resource research production; it is also about the demystification of the ideological structures within which these power relations are located. According to Giroux, researchers, along with other transformative intellectuals, . . . need to understand how subjectivities are produced and regulated through historically produced social forms and how these forms carry and embody particular interests. At the core of this position is the need to develop modes of enquiry that not only investigate how experience is shaped, lived and endured within particular social forms . . . but also how certain apparatuses of power produced forms of knowledge that legitimate a particular kind of truth and way of life. (Quoted in Sherman & Webb, 1988, p. 196)

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Feminist research has probably made most progress in the demystification of existing ideological structures in that When feminist epistomologies are proposed, they not only set out to legitimise a new field of inquiry; often they also question the entire nature of the ‘scientific project’ and its underlying metaphysics. (Halberg, 1989, p. 3) These epistemologies (and according to Harding [1987], there are at least two, feminist empiricism and feminist standpoint research) have also made progress in developing methodological strategies commensurate with the emancipatory paradigm. The three key fundamentals on which such a paradigm must be based are reciprocity, gain and empowerment (Gollop, 1989). These fundamentals can be built in by encouraging self-reflection and a deeper understanding of the research situation by the research subjects (Lather, 1987). Unfortunately such a view can be criticised on precisely the same grounds as the previous two paradigms; the social relations of research production may not necessarily be changed at all. Instead of research achieving social change (transformation) through engineering or enlightenment approaches to policy, it will achieve it through the empowerment of research subjects and the main technique for empowerment will be the encouragement of reciprocity. While reciprocity is a worthwhile aim, claims to have achieved it (Oakley, 1981) have recently been called into question and it has been argued that within existing social relations of research production, researchers never reveal as much about themselves as they expect to be revealed (Ribbens, 1990). Further empowerment does not exist as the gift of few who have it to be delivered to those who do not; people can only empower themselves (Freire, 1972). The issue then for the emancipatory research paradigm is not how to empower people but, once people have decided to empower themselves, precisely what research can then do to facilitate this process. This does then mean that the social relations of research production do have to be fundamentally changed; researchers have to learn how to put their knowledge and skills at the disposal of their research subjects, for them to use in whatever ways they choose. The task for emancipatory research is not, as is sometimes implied, to help the researched to understand themselves better, but to develop its own understanding of the lived experiences of these very subjects. This is, of course, a dialectical process in which research can play a significant part. The importance of emancipatory research, therefore, . . . is in establishing a dialogue between research workers and the grass-roots people with whom they work, in order to discover and realise the practical and cultural needs of those people. Research here becomes one part of a developmental process including also education and political action. (Reason, 1988, p. 2)

The social relations of research production 279 Hence such research can challenge the social relations of research production, it can be about the self-understanding of researchers as well as researched and it need not be separated from wider processes of education and politics. Empowerment through self-understanding is a process through which many oppressed groups are beginning to pass and emancipatory research can have a role to play in this. Such self-understanding is an essential pre-requisite to providing a re-definition of ‘the real nature of the problem’. This process has been succinctly captured in a commentary on research on black issues. It was not black people who should be examined, but white society; it was not a case of educating blacks and whites for integration, but of fighting institutional racism; it was not race relations that was the field for study, but racism. (Bourne, 1981, p. 339) This quote, 10 years later applies exactly to the ‘state’ of disability research; it is not disabled people who need to be examined but able-bodied society; it is not a case of educating disabled and able-bodied people for integration, but of fighting institutional disablism (Oliver, 1990); it is not disability relations which should be the field for study but disablism. So, at last we can begin to identify a research agenda for emancipatory disability research; not the disabled people of the positivist and interpretive research paradigms but the disablism ingrained in the individualistic consciousness and institutionalised practices of what is, ultimately, a disablist society. These are the issues that disabled people have placed on the research agenda: the key issue for the research community is whether or not they can respond. Bourne (1981) suggests three ways in which this new research paradigm can make a contribution to the combating of racism: (i) a description of experience in the face of “academics who abstract and distort black experience (however, unwittingly)”; (ii) a re-definition of the problem; and (iii) a challenge to the ideology and methodology of dominant research paradigms. To that list written more than 10 years ago, disabled people would want to add the following: (iv) the development of a methodology and set or techniques commensurate with the emancipatory research paradigm; (v) a description of collective experience in the face of academics who are unaware or ignore the existence of the disability movement; and (vi) a monitoring and evaluation of services that are established, controlled and operated by disabled people themselves.

Conclusions—the way ahead The argument presented here has suggested that existing research paradigms have proved inadequate and hence, will not be useful in trying to construct a disability research agenda for the future. Issues highlighted by disabled people have been identified and it has been suggested that they can only be tackled by building a new research paradigm which fundamentally changes the existing social relations of research production.

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Finally, this new paradigm must throw off the shackles of methodological individualism with its inadequate and abstracted view of the individual for emancipatory research can only be really accomplished . . . on the basis of a view of unabstracted individuals in their concrete social specificity, who in virtue of being persons, all require to be treated and to live in a social order which treats them as possessing dignity, as capable of exercising and increasing their autonomy, of engaging in valued activities within a private space, and of developing their several potentialities. (Lukes, 1973, pp. 152–153) Thus the transcending of methodological individualism produces a vision of society exactly the same as the one for which disabled people are currently struggling. The struggle to produce just such a social order is not one for disabled people alone and Howard Becker’s question is revealed as false; we are all on each other’s side.

References Abberley, P. (1991) The significance of the OPCS disability surveys, in: M. Oliver (Ed.) Social Work: disabled people and disabling environments (London, Kingsley). Blaxter, M. (1980) The Meaning of Disability (London, Heinemann). Borsay, A. (1986a) Personal trouble or public issue? Towards a model of policy for people with physical and mental disabilities, Disability, Handicap & Society, 1, pp. 179–196. Borsay, A. (1986b) Disabled People in the Community (London, Bedford Square Press). Bourne, J. (1981) Cheerleaders and ombudsmen: a sociology of race relations in Britain, Race and Class, 21, pp. 331–352. Bulmer, M. (1981) The Uses of Social Research: social investigations in public policy making (London, Allen & Unwin). Carr, W. & Kemmis, S. (1986) Becoming Critical: education, knowledge and action research (Lewes, Falmer Press). Chambers, R. (1983) Rural Development: putting the last first (Harlow, Longman). Cicourel, A. (1964) Method and Measurement in Sociology (New York, Free Press). Cohen, S. & Taylor, L. (1972) Psychological Survival: the experience of long-term imprisonment (Harmondsworth, Penguin). Disability Alliance (1988) Briefing on the First Report from the OPCS Surveys of Disability (London, Disability Alliance). Disability Alliance (1989) Poverty and Disability: breaking the link (London, Disability Alliance). Disablement Income Group (1988) Not the OPCS Survey: being disabled costs more than they said (London, Disablement Income Group). Disablement Income Group (1989) DIG’s National Disability Income (London, Disablement Income Group). Edgerton, R. (1967) The Cloak of Competence (Berkeley, CA, University of California Press). Finch, J. (1986) Research and Policy: the uses of qualitative methods in social and educational research (Lewes, Falmer Press). Finkelstein, V. (1985) Paper given at World Health Organisation Meeting, 24–28 June, Netherlands.

The social relations of research production 281 Freire, P. (1972) Pedagogy of the Oppressed (Harmondsworth, Penguin). Gerber, D. (1990) Listening to disabled people, Disability, Handicap & Society, 5, pp. 3–24. Giddens, A. (1979) New Rules of the Sociological Method (London, Hutchinson). Giroux, A. (1988) ‘Critical theory and the politics of culture and voice’. Rethinking the discourse of educational research, in: R. Shearman & R. Webb (Eds), Qualitative Research in Education: focus and methods. Gouldner, A. (1975) For Sociology: renewal and critique in sociology today (London, Pelican). Harris, A. (1971) Handicapped and Impaired in Great Britain (London, HMSO). Heller, F. (Ed.) (1986) The Use and Abuse of Social Science (London, Sage). Hindness, B. (1980) Philosophy and Methodology in the Social Sciences (New York, Harvester). Jenkins, R. (1971) The Production of Knowledge in the IRR (London, Institute for Race Relations). Kallen, D., Kosse, G., Wagenaar, H., Kloprogge, J. & Vorbeck, M. (1982) Social Science Research and Public Policy Making: a reappraisal (Windsor, NFER-Nelson). Kuhn, T. (1961) The Structure of Scientific Revolutions (Chicago, IL, Chicago University Press). Lather, P. (1987) Research as praxis, Harvard Educational Review, 56, pp. 257–273. Liazos, A. (1972) The poverty of the sociology of deviance: nuts, sluts and perverts, Social Problems, 20, pp. 102–120. Lukes, S. (1972) Individualism (Oxford, Basil Blackwell). Maguire, P. (1987) Doing Participatory Research: a feminist approach (Amherst, MA, University of Massachusetts). Martin, J., Meltzer, H. & Elliott D. (1988) The Prevalence of Disability among Adults (London, HMSO). Martin, J. & White, A. (1988) The Financial Circumstances of Disabled Adults in Private Households (London, HMSO). Oliver, M. (1983) Social Work with Disabled People (Basingstoke, Macmillan). Oliver, M. (1986) Social policy and disability: some theoretical issues, Disability, Handicap & Society, 1, pp. 5–18. Oliver, M. (1987) Re-defining disability: some issues for research, Research, Policy and Planning, 5, pp. 9–13. Oliver, M. (1990) The Politics of Disablement (Basingstoke, Macmillan). Oliver, M. & Zarb, G. (1989) The politics of disability: a new approach, Disability, Handicap & Society, 4, pp. 221–239. Popper, K. (1972) Conjectures and Refutations (London, Routledge). Reason, P. (Ed.) (1988) Human Inquiry in Action: developments in new paradigm research (London, Sage). Reinharz, S. (1979) On Becoming a Social Scientist (San Francisco, CA, Jossey-Bass). Ribbens, J. (1990) Interviewing—an unnatural situation?, Women’s Studies International Forum, 12, pp. 579–592. Roberts, H. (Ed.) (1981) Doing Feminist Research (London, Routledge & Kegan Paul). Rowan, J. (1981) A dialectical paradigm for research, in: P. Reason & J. Rowan (Eds) Human Inquiry: a sourcebook of new paradigm research (Chichester, John Wiley). Sherman, R. & Webb, R. (Eds) (1988) Qualitative Research in Education: focus and methods (London, Falmer Press). Shotland, R. & Mark, M. (Eds) (1985) Social Science and Social Policy (London, Sage).

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UPIAS (1975) Fundamental Principles of Disability (London, Union of the Physically Impaired Against Segregation). Wenger, C. (Ed.) (1987) The Research Relationship: practice and politics in social policy research (London, Allen & Unwin). Wood, P. (1980) International Classification of Impairments, Disabilities and Handicaps (Geneva, World Health Organisation).

17 Personal and political A feminist perspective on researching physical disability Jenny Morris 101 Calabria Road, London

Abstract Feminist theory and methodology have much to offer in understanding how disability research has been experienced as alienated research by disabled people. However, feminist research has failed to apply its principles to disability and disabled women’s subjective reality has found no place in mainstream feminist work. The paper identifies the challenges for feminism in addressing the interests and reality of disabled women, asserting that it is not helpful to focus on ‘double disadvantage’. Disability research itself has much to learn from feminist methodology, in particular the principle of making the personal political. The role of non-disabled researchers as allies of disabled people is discussed, and the importance of research which turns the spotlight on the way in which non-disabled society oppresses disabled people. Finally, it is asserted that disability research and politics are of general relevance because the experience of disability is an integral part of a society characterised by fundamental inequalities and ideologies which divide people against each other.

Introduction This paper is not really about gender and disability, except to point out that research which only includes disabled men is not ungendered research. Thus such research should be called a study of disabled men and not a study of disabled people; similarly research which only includes white disabled people should be called a study of white disabled people. Neither am I interested in talking about whether disabled women experience a ‘double disadvantage’—for reasons which will become clear. Instead, what I want to do is take the original aim of this series of seminars and the agenda laid down by Mike Oliver in his paper and look at what a feminist perspective might have to offer. In the proposal for the series of seminars on researching disability which were funded by the Joseph Rowntree Foundation, the proposers identified that disability research has, in the main, been part of the problem rather than part of the solution from the point of view of disabled people. Such research, they said, has been severely criticised by disabled people because “it has been seen as a

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violation of their experience, irrelevant to their needs and as failing to improve their material circumstances and quality of life”. In his own seminar paper, Mike Oliver identified that disabled people experience disability research as alienation—in the sense of alienation from the product of research, from the research process, from other research subjects, and from one’s self. In that paper—and in other writings—he argued for the development of a new paradigm of research—emancipatory research. This must be based on: empowerment and reciprocity; changing the social relations of research production; changing the focus of attention away from disabled individuals and onto disablist society. As a disabled researcher, seeking to incorporate a feminist and a disability rights perspective into my research, what can I contribute to these aims?

What characterises a feminist perspective and what makes it relevant to researching physical disability? My life as a feminist began with my recognition that women are excluded from the public sphere, ghettoised into the private world of the family, our standpoint excluded from cultural representations. When I became disabled I also realised that the public world does not take individual, particular, physical needs into account. Just as it assumes that children are reared, workers are serviced somewhere else, i.e. in the private world of the family, so people whose physical characteristics mean that they require help of some kind (whether this need is actually created by the physical environment or not) have no place in the public world. As a feminist I recognised that men’s standpoint is represented as universal and neutral. Simone de Beauvoir wrote: “. . . the relation of the two sexes is not quite like that of two electrical poles for man represents both the positive and the neutral . . . whereas woman represents only the negative, defined by limiting criteria, without reciprocity”. Women have thus been excluded from a full share in the making of what becomes treated as our culture. When I became disabled I realised that, although disability is part of human experience, it does not appear within the different forms that culture takes—except in terms defined by the non-disabled (just as the cultural representation of women was/is defined by men). A lack of disability is treated as both the positive and the universal experience; while the experience of disability “represents only the negative, defined by limiting criteria, without reciprocity”. Patricia Hill Collins’s statement (in her book Black Feminist Thought) has a doubly powerful meaning for me: “Groups unequal in power are correspondingly unequal in their ability to make their standpoint known to themselves and others” (Hill Collins, 1990, p. 26). Making our standpoint known to both ourselves and to others is a central part of the feminist research agenda, as it must also be of a disability rights agenda.

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What is meant by the term ‘feminist research’? Women have previously experienced research as alienation. “Objectivity”, as Liz Stanley says, “is a set of intellectual practices for separating people from knowledge of their own subjectivity” (Stanley, 1991, p. 11)—or as Adrienne Rich once said, “Objectivity is a word men use to describe their own subjectivity”. Building on this recognition of research as alienated knowledge, feminist research is characterised by a method which, as Dorothy Smith says, “at the outset of inquiry, creates the space for an absent subject, and an absent experience, that is to be filled with the presence and spoken experience of actual women speaking of and in the actualities of their everyday worlds” (Smith, 1988, p. 107). Does disability research do this for disabled people? Most of it clearly does not which is one reason why disabled people experience such research as alienation. This quote from Dorothy Smith also reminds me of one of the reasons why I am uneasy about the use of medical and social models in disability research. Such models are problematic because they do not easily allow the space within the research for the absent subject. The use of models as an analytical tool comes from theory and research which treats us as objects. Is it possible to adapt such an analytical tool for the production of unalienated research? As Dorothy Smith says in the context of feminist research on women, “The problem . . . is how to do a sociology that is for women and takes women as its subjects and its knowers when the methods of thinking, which we have learned as sociologists as the methods of producing recognisably sociological texts, reconstruct us as objects” (Smith, 1988, p. 109). This is the task for disability research also and, again, I am wary of the use of models for they come from a form of thinking which has treated disabled people as objects. According to Liz Stanley, three things distinguish “unalienated knowledge” in feminist terms: – –

–

the researcher/theorist is grounded as an actual person in a concrete setting; understanding and theorising are located and treated as material activities and not as unanalysable metaphysical ‘transcendent’ ones different in kind from those of ‘mere people’; and the ‘act of knowing’ is examined as the crucial determiner of ‘what is known’ (Stanley, 1990, p. 12).

How have feminist research and theory failed to apply their basic principles to disability? If we apply the above principles to feminist research concerning disability, however, we see that such research is in fact alienated knowledge as far as disabled people are concerned. This is because the researcher/theorist has not

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grounded herself as a non-disabled person holding certain cultural assumptions about disability; because the understanding and theorising have not been treated as taking place in the context of an unequal relationship between nondisabled people and disabled people; and because the ‘act of knowing’, which in this case is predicated on the social meaning of disability, has not been examined as the crucial determiner of ‘what is known’. The feminist research on informal carers is a prime example of the production of alienated research from the point of view of disabled people—as Lois Keith’s paper shows. However, it is not just the way that feminists have treated disabled people within their research which is problematic, it is also how they have left disabled women out. This is clear if we look at the development of research over the last 20 years. There were two stages to the development of feminist research. The first was that of ‘adding women in’ to the previously male dominated view of the world. This produced some revealing studies in a number of different disciplines, but it was the second stage that was more revolutionary. Feminists found that, rather than just adding women to the subject matter of research, theories and methodologies had to be fundamentally challenged for existing models and paradigms were inadequate to explain women’s (or men’s) realities. In so doing, feminists not only asserted that the personal, subjective experience of women was a legitimate area of research but that how this research was done had to be revolutionised. They went on to develop new paradigms, theories and, finally a new philosophy which illustrated that feminism is not just about the study of women but about an entirely new way of looking at the world. The most recent developments in feminist thought have focussed on a recognition of the experiences of different groups of women and the relationship between gender and other forms of oppression. Elizabeth Spelman, amongst others, has argued that feminism’s assertion of what women have in common has almost always been a description of white middle-class women and that when other groups of women are considered they tend to be ‘added on’ as subjects of research and theorising. White middle-class women’s experiences have been taken as the norm and other women’s experiences have been treated as ‘different’, as the subject of particular study and analysis. Thus, white middleclass women’s reality is the basis of general theory and analysis (in the same way that men’s reality was), and the reality of other groups of women is treated as particular, as separate from the general. Spelman writes, for example, “Most philosophical accounts of ‘man’s nature’ are not about women at all. But neither are most feminist accounts of ‘woman’s nature’, ‘women’s experiences’ about all women. There are startling parallels between what feminists find disappointing and insulting in Western philosophical thought and what many women have found troubling in much of Western feminism” (Spelman, 1990, p. 6). Such a recognition has (potentially) as radical an effect on feminist thought as feminism itself has had on world views dominated by men and men’s experiences.

Personal and political 287 Yet there are two groups of women who are missing from Spelman’s analysis. In identifying that “working class women, lesbian women, Jewish women and women of colour” have been considered as ‘inessential’ within feminist philosophy, Spelman has—in common with most non-disabled feminists—left out two important groups, namely older women and disabled women. Disability and old age are aspects of identity with which gender is very much entwined but they are identities which have been almost entirely ignored by feminists. Feminist theory has been broadened, and refined, by the placing of the issues of class and race at the heart of feminism as a philosophy and as explanation. But the issues of disability and old age are either not considered at all, or dismissed in the way that Caroline Ramazanoglu does when she justifies her failure to incorporate disabled and older women into her analysis. She writes: “while these are crucial areas of oppression for many women, they take different forms in different cultures, and so are difficult to generalise about. They are also forms of difference which could be transformed by changes in consciousness” (Ramazanoglu, 1989, p. 95). These are really flimsy arguments. Racism also takes different forms in different cultures yet recent feminist analysis has, quite rightly, argued that black women’s experiences and interests must be placed at the heart of feminist research and theory. Her second statement is an extraordinary denial of the socio-economic base of the oppression which older people and disabled people experience—we might as well say that racism can be eradicated by compulsory anti-racism training. The fact that disability has not been integrated into feminist theory arises from one of the most significant problems with feminism’s premise that ‘the personal is political’. As Charlotte Bunch acknowledges: In looking at diversity among women, we see one of the weaknesses of the feminist concept that the personal is political. It is valid that each woman begins from her personal experiences and it is important to see how these are political. But we must also recognise that our personal experiences are shaped by the culture with all its prejudices. We cannot therefore depend on our perceptions alone as the basis for political analysis and action— much less for coalition. Feminists must stretch beyond, challenging the limits of our own personal experiences by learning from the diversity of women’s lives. (Bunch, 1988, p. 290) Disabled people—men and women—have little opportunity to portray our own experiences within the general culture—or within radical political movements. Our experience is isolated, individualised; the definitions which society places on us centre on judgements of individual capacities and personalities. This lack of a voice, of the representation of our subjective reality, means that it is difficult for non-disabled feminists to incorporate our reality into their research, their theories, unless it is in terms of the way the non-disabled world sees us. This does not mean that the experience of disability and old age should be

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‘added on’ to existing feminist theory. Integrating these two aspects of identity into feminist thought will be just as revolutionary as feminism’s political and theoretical challenge to the way that the experience of the white male was taken as representative of general human experience. Indeed feminism’s challenge must remain incomplete while it excludes two such important aspects of human experience and modes of social and economic oppression. So where does this leave me as a disabled feminist? It means that I want to both challenge feminism to incorporate the subjective reality of disabled women, but I also want disability research to incorporate feminist research methods.

Two challenges for feminism First, disability is an important issue for women but the subject of ‘disabled women’ should not be tacked on as a ‘free-standing’ research subject bearing no relationship to other research areas in which feminists are engaged. In my own research, I have recently come across three examples of oppression experienced by disabled individuals where gender issues intermesh with disability, although in different ways: — The rape of a young disabled woman by an ambulance attendant while she was being taken home from a residential college with a broken arm. — The recording, by a male social worker, in the case notes of a disabled client that he thought he had discovered her masturbating and the conclusions that he drew from this about her personality. — A policeman and social worker waiting in a hospital corridor for a disabled woman to give birth at which point they removed her baby from her under a Place of Safety Order on the grounds that her physical disability prevented her from looking after the child. These incidents are all concerned with violation of one kind or another and they all take place in the context of both unequal power relationships and oppressive ideologies. My challenge to feminists is that they need to ask themselves whether these experiences of oppression are only of interest to disabled women. The three examples illustrate different ways in which the oppression experienced by women and by disabled people intermesh. However, it is something of a red herring to spend much time analysing the relationship between sexism and disablism. What is more interesting to me is whether the experience of the women described above appears on the main agenda of non-disabled feminist researchers—or is it, at best, tacked on as a supplementary issue, on the assumption that disabled women’s experience is separate from that of non-disabled women. Secondly, I would also argue that it is not very helpful to talk about disabled women experiencing a ‘double disadvantage’.

Personal and political 289 Images of disadvantage are such an important part of the experience of oppression that emancipatory research (research which seeks to further the interests of ‘the researched’) must consistently challenge them. Therein lies one of the problems with examining the relationship between gender and disability, race and disability in terms of ‘double disadvantage’. The research can itself be part of the images of disadvantage. If disability research is to be emancipatory research then it must be part of disabled people’s struggle to take over ownership of the definition of oppression, of the translation of their subjective reality. As Alice Walker writes, “In my own work I write not only what I want to read . . . I write all the things I should have been able to read”. I do not think that I, or many other disabled women, want to read non-disabled researchers analysing how awful our lives are because we ‘suffer from’ two modes of oppression.

What kind of disability research do I want to see? I am interested in identifying the relevance of feminist theory and methodology for developing disability research which will empower disabled people. There are four main points which I would make in this respect. (1) The role of research in personal liberation. For women like me, as Liz Stanley and Sue Wise write, feminism is a way of living our lives: It occurs as and when women, individually and together, hesitantly and rampantly, joyously and with deep sorrow, come to see our lives differently and to reject externally imposed frames of reference for understanding these lives, instead beginning the slow process of constructing our own ways of seeing them, understanding them, and living them. For us, the insistence on the deeply political nature of everyday life and on seeing political change as personal change, is quite simply, ‘feminism’. (Stanley & Wise, 1983, p. 192) In a similar fashion, a disability rights perspective—which identifies that it is the non-disabled world which disables and oppresses me—enables me to understand my experience, and to reject the oppressive ideologies which are applied to me as a disabled woman. I took to disability research to validate this perspective (in the same way that feminist research has validated a feminist consciousness). Susan Griffin identified the way in which during the 1970s, women “asserted that our lives, as well as men’s lives, were worthy of contemplation; that what we suffered in our lives was not always natural, but was instead the consequences of a political distribution of power. And finally, by these words, we said that the feelings we had of discomfort, dissatisfaction, grief, anger and rage were not madness, but sanity” (Griffin, 1982, p. 6).

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I look to disability research to confirm the relevance of these words to disabled people—our anger is not about having ‘a chip on your shoulder’, our grief is not ‘a failure to come to terms with disability’. Our disatisfaction with our lives is not a personality defect but a sane response to the oppression which we experience. Unfortunately very little disability research does anything other than confirm the oppressive images of disability. (2) The personal experience of disability. Researchers such as Vic Finkelstein and Mike Oliver have been arguing for years against the medical model of disability and in so doing they have been making the personal political in the sense that they have insisted that what appears to be an individual experience of disability is in fact socially constructed. However, we also need to hang on to the other sense of making the personal political and that is owning, taking control of, the representation of the personal experience of disability—including the negative parts to the experience. Unfortunately, in our attempts to challenge the medical and the ‘personal tragedy’ models of disability, we have sometimes tended to deny the personal experience of disability. Disability is associated with illness, and with old age (two-thirds of disabled people are over the age of 60), and with conditions which are inevitably painful. The Liberation Network of People with Disabilities, an organisation which made an explicit attempt to incorporate the politics of the personal, recognised this in their policy statement. This statement included the point that, unlike other forms of oppression, being disabled is “often an additional drain on the resources of the individual, i.e. it is not inherently distressing to be black, whilst it may be to suffer from painful arthritis” (In From the Cold, June 1981). To experience disability is to experience the frailty of the human body. If we deny this we will find that our personal experience of disability will remain an isolated one; we will experience our differences as something peculiar to us as individuals—and we will commonly feel a sense of personal blame and responsibility. When illness and physical difficulties—and old age—are so associated with personal inadequacies and are so painful to confront, it is also easy for us, in our attempts to assert control over our lives, to insist that we are young, fit, competent. The truth of the matter is that most disabled people are not young, are not fit, and have great difficulty in developing the competence to control our lives. The experience of ageing, of being ill, of being in pain, of physical and intellectual limitations, are all part of the experience of living. Fear of all of these things, however, means that there is little cultural representation which creates an understanding of their subjective reality. The disability movement needs to take on the feminist principle of the personal is political, and in giving voice to such subjective experiences, assert the value of our lives. Disability research, if it is emancipatory research (in the way that Mike Oliver defines it), can play a key role in this.

Personal and political 291 (3) Non-disabled researchers as allies. All oppressed groups need allies. Nondisabled researchers have two roles as allies. (a) Non-disabled academics and researchers should ask themselves where are the disabled researchers? students? academics? They should recognise and challenge both direct and indirect discrimination. Unfortunately, most non-disabled people don’t even recognise the way that discrimination against disabled people operates within their workplace. Getting disabled people into the positions where we play a full role in carrying out research and disseminating it is as important for disabled people as the same process was and is for women. As Audre Lourde says, “It is axiomatic that if we do not define ourselves for ourselves, we will be defined by others—for their use and to our detriment” (quoted by Hill Collins, 1990, p. 26). (b) Non-disabled people, if they make their living from being involved in the field of disability, should ask themselves whether/how they can do research which empowers disabled people. Non-disabled researchers have to start by questioning their own attitudes to disability. For example, why does Caroline Ramazanoglu dismiss disability and old age in the way that she does? She cannot see either as a source of strength, celebration or liberation in the way that race, class and gender can become through a process of struggle. Non-disabled people need to examine why not. Feminist research places women’s subjective reality (i.e. experience defined in the subject’s own terms) at its core. However, when researchers (feminist or not) approach disabled people as a research subject, they have few tools with which to understand our subjective reality because our own definitions of the experience of disability are missing from the general culture. If non-disabled people are to carry on doing research on disability—as they undoubtedly will—what kind of research should they be doing? (a) Turning the spotlight on the oppressors. Non-disabled people’s behaviour towards disabled people is a social problem—it is a social problem because it is an expression of prejudice. Such expressions of prejudice take place within personal relationships as well as through social, economic and political institutions and, for example, a study of a caring relationship therefore needs to concern itself with prejudice, in the same way that studies of relationships between men and women concern themselves with sexism. (b) Our personal experience of prejudice must be made political—and space must be created for the absent subject. This point is illustrated by an example of research which needs to be done—namely, research concerning the experience of abuse within institutions. Such research would have three aims: — naming the experience as abuse, — giving expression to the anger, pain and hurt resulting from such experiences, and — focusing on the perpetrators of such abuse, examining how and why it comes about.

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The disability movement has started to identify the different forms of abuse that disabled people experience. One example is what has been called ‘public stripping’. This is experienced by many disabled people in a hospital setting. For example a woman with spina bifida described her experience throughout her childhood when she was required by an orthopaedic consultant to be examined once a year. These examinations took place in a large room, with 20 or more doctors and physiotherapists looking on. After the hospital acquired videotaping equipment the examinations were videotaped. She described how, when she was 12, she tried to keep on her bra which she had just started to wear. I quote from the article which described her experience: “The doctor, in order to explain something about her back, took it off without saying anything to her, but with noticeable irritation. A nurse quickly apologised—not to Anne but to the doctor” (Disability Rag, Jan./Feb. 1990). Anne knew that this kind of humiliation was inflicted on her because she was, as one doctor called her, “significantly deformed and handicapped”. The prejudice and the unequal power relationships which are an integral part of disabled people’s experience of health services has led, in this type of situation, to both abuse and exploitation: abuse because privacy and personal autonomy have been violated, leading to long-lasting psychological consequences for many who have experienced this kind of public stripping; exploitation because, rather than being provided with a medical service (which is why people go to doctors and hospitals) people like Anne are actually providing a service to the medical profession. (4) Disability research and disability politics are of general relevance to all social groups. This is not just because disability is found amongst all social groups but also because the experience of disability is part of the wider and fundamental issues of prejudice and economic inequality. Black people’s experience of racism cannot be compartmentalised and studied separately from the underlying social structure; women’s experience of sexism cannot be separated from the society in which it takes place; and neither can disabled people’s experience of disablism and inequality be divorced from the society in which we all live. Feminists ask how and why the public world assumes that responsibilities and tasks which take place within the private world will not impinge on the responsibilities and tasks of the workplace. Disability research must ask how and why the public world of work assumes a lack of disability and illness. It is such a focus which takes both women and disabled people out of a research ghetto for these are fundamental questions about the very nature of social and economic organisations. Our society is characterised by fundamental inequalities and by ideologies which divide people against each other—the experience of disability is an integral part of this.

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References Bunch, C. (1988) Making common cause: diversity and coalitions, in: C. McEwen & S. O’Sullivan (Eds) Out the Other Side (London, Virago). Finkelstein, V. (1980) Attitudes and Disabled People: issues for discussion (New York, World Rehabilitation Fund). Griffin, S. (1982) Made from This Earth (London, Women’s Press). Hill Collins, P. (1990) Black Feminist Thought: knowledge consciousness, and the politics of empowerment (London, Unwin Hyman). Keith, L. (1990) Caring partnership, Community Care, 22 (February), pp. v–vi. Morris, J. (1991) Pride against Prejudice: transforming attitudes to disability (London, Women’s Press). Ramazanoglu, C. (1989) Feminism and the Contradictions of Oppression (London, Routledge). Smith, D. (1988) The Everyday World as Problematic: a feminist sociology (Milton Keynes, Open University Press). Spelman, E. (1990) Inessential Woman (London, Women’s Press). Stanley, L. (1990) Feminist Praxis: research, theory and epistemology in feminist sociology (London, Routledge). Stanley, L. & Wise, S. (1983) Back into the personal or: our attempt to construct ‘feminist research’, in: G. Bowles & D. Klein (Eds) Theories of Women’s Studies (London, Routledge).

18 Race and disability Just a double oppression? O.W. Stuart 130b Abbey Road, London

Abstract This paper questions the notion that being a black disabled person is to experience a ‘double oppression’. On the contrary, this paper suggests that black disabled people have a singular experience. The sum of a number of experiences helps to shape the general outlook of this group. Rather than double oppression, these experiences occur simultaneously; this is a more appropriate description. The image of black disabled people has been ascribed from without. This is based upon a comparison with the experience of white people. For example, certain ailments experienced by black people are seen in terms of a failure on their part to follow ‘a healthy Western diet’. This paper suggests that decision making by those who allocate finite state resources assume a similar norm. The immigration debate stigmatises black people as interlopers in Britain. Both bizarre health practices and the fear of interlopers isolate black disabled people. Finally, this paper looks at the impact of this form of marginalisation on the ethnic minority community. However, the identities constructed by these various communities in response to ascription impacts upon their disabled peers. This is because of wide acceptance of the medical model of disability.

Double oppression: an appropriate starting point? There is a temptation to represent the experience of disabled people within ethnic minority communities as a ‘double oppression’. It is assumed that these people have to contend with the disabling experience of impairment. Yet they do so within a social environment which is discriminatory and bigoted against ethnic minority communities in Britain (Confederation of Indian Organizations, 1987). This notion has found wide currency in the debate about black disablement (Oliver, 1990)1. Nevertheless, is this experience adequately represented by such a vague conceptual framework? Is it the correct starting point from which to begin research on this subject? Is there a more appropriate way in which to understand the experience of being a black disabled person? It is my contention that the assumptions behind the phrase ‘double oppression’ make this an inadequate starting point. Unfortunately, an alternative

Race and disability 295 approach is not immediately to hand to replace it. There has been minimal research to define clearly what is meant by this or any other concept of the black disabled experience (Atkin & Rollins, 1991). As a consequence, the phrase ‘double oppression’ is rather empty; for too long rhetoric has been the substitute for substance. The nature of racism in Britain today means that it is not enough to challenge oppressive models of disability. What is required by black disabled people is a wider agenda, one which incorporates their experience as British citizens. The starting point for this must be an acceptance that even at the margins of this society—where the majority of disabled people are trapped—black disabled people have been marginalised. Activist and campaigning organizations of disabled people, such as the British Council of Disabled People (BCODP), have sought to challenge overtly racist practices perpetuated in institutions and by service providers on the behalf of black disabled people. Through these organisations of disabled people, racism within service provision, the failure to provide ethnic minority groups with adequate information about services, as well as an insensitivity by the authorities towards linguistic and cultural difference have been identified. Such criticisms have been the stuff of a number of recent conferences organized by the disability movement (Brent Council, 1988; GLAD, 1991). There is no doubt that such activities have made a vital contribution to our understanding of the specific situation endured by black disabled people. It is also an indication of the importance disability movement has begun to give to the experience of black disabled people, of which this paper is further evidence. Nevertheless, criticism of this kind still fails to improve our understanding of the basis of the sort of oppression experienced. It is important to point out that both anti-racist writers and the disability movement express an alternative identity to the one perceived as the norm within this society. For disabled people this norm is a history of our society from which disability is either absent or constructed in a way which as to render individuals abnormal or powerless (Harris, 1971; Wood, 1981). In this construction disability is not seen as rising from social causes (Oliver, 1990). Likewise, anti-racist writers challenge the norm as constructed within the philosophy of ‘the new racism’. In its most rarefied form it relies upon the capacity to link discourses of patriotism, nationalism, xenophobia, Englishness, Britishness into a complex system which gives ‘race’ its contemporary meaning. These themes combine to provide a definition of ‘race’ in terms of culture and identity (Barker, 1981; Lawrence, 1982; Gilroy, 1987). “Race differences are expressed in culture and reproduced in educational institutions and, above all, in family life” (Gilroy, 1987). This image is reinforced by specific traditions and cultural expressions which seek to describe the English and distinguishing the British. This ‘Island Race’ and ‘the Bulldog Breed’ convey the way in which this nation is represented in national, biological and cultural terms simultaneously. New racism has at the core of its agenda the mobilisation of culture, in the place of phenotype, as the primary representation of difference. For them

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English culture is exclusive; it cannot include those British citizens who are of New Commonwealth descent (Barker, 1981). Marginalisation is the quintessential experience of black and disabled people within this society. A society replete with disabilist language is an indication of the degree to which disabled people are left on the outside. By way of comparison, immigration policy, the state’s inclusion and exclusion device, is for ‘new racism’ the touchstone of their wider legitimacy. Immigration specifies who may and who may not belong to the national community. By definition, this device advances reasons for segregation and banishment. Its exploitation by the state renders black people vulnerable and banished to the margin (Gilroy, 1987). Both organisations within the disability movement, such as BCODP, and anti-racist writers have each sought to posit different images of this society to those expressed at the centre. This has largely been by accident rather than by design, but does reflect the fact that each of their respective constituencies are at the margins of this society. The former has campaigned against the medical model of impairment (Oliver, 1990). The latter has emphasised the existence of a rich black history, especially, a black history of England. It is the suggestion that black disabled people cannot fully associate with these alternative constructions which is central to this paper. However this feeling of estrangement from each of these forces has been ill defined.

Simultaneous oppression: the way forward So. I reject the notion that black disabled people experience a kind of double oppression. The oppression black disabled people endure is, in my opinion, a special situation. It is one, however, which is closely related to the atmosphere of intolerance in Britain. Thus, on the contrary, I suggest that racism within disability is part of a process of simultaneous oppression which black people experience daily in Western society. It is also an experience which divides disabled people from their black able-bodied peers. However, although this experience may be distinct it should not be seen in isolation. I agree with the argument put forward by Morris (1992) when she states that research on, in her case, disabled women should not be tacked on as a free-standing research subject bearing no relationship to other areas of related research. Likewise, the experience of disabled black people is very much part of the atmosphere of intolerance in Britain. As with ethnic minority communities and disabled people, intolerance has pushed this group to the margins of British society. However, there is a dearth of research and limited social and political awareness of this situation (Atkin & Rollins, 1991). It is because of this situation that it is necessary to construct a distinct and separate black disabled identity. The purpose of such a process would be to clearly define this group, but not only for its own sake. It would also help us to obtain a better understanding of how the construction of particular identity which represents the centre of this society— and at the margins too—excludes.

Race and disability 297 Do not misunderstand me, I am not demanding a special place for black disabled people in a notional hierarchy of oppression. On the contrary, such a debate is circular, time-consuming and irrelevant. Racist practices have a cumulative effect. The experience of black disabled people will add to a greater insight into its wider practice. Equally the experience of other groups can help to inform that of black disabled people. One such group is black women. Their debates about the question of oppression do provide a clue to the direction black disabled people ought to take. At the beginning of the last decade black radical feminist writers began to strongly assert that their experience of oppression differs in substance and intensity from that understood by their white peers. Carby (1982) makes this point clearly. The experience of black women does not enter the parameters of parallelism (the attempts to parallel race and gender divisions). The fact that black women are subject to simultaneous oppression [her emphasis] of patriarchy, class and ‘race’ is the prime reason for not employing parallels that render their position and experience not only marginal but invisible. Simultaneous oppression, which I unashamedly borrow from Carby, is the key to understanding the experience of black disabled people. It is oppression which separates them from all other groups. Yet what are the main forms in which it is expressed? In what ways does it set this group apart from comparable groups — white disabled people and able-bodied black people? I have identified three areas where I consider black disabled people experience a distinct form of oppression. These are first, limited or no individuality and identity; secondly, resource discrimination; and finally, isolation with black community and the family. Each is informed by aspects of the tenets of ‘new racism’. In sum they isolate black disabled people and place them at the margins of the ethnic minority and disabled populations. For convenience and simplicity, I will deal with each form of oppression separately and in isolation. However, it should be remembered that in reality a black disabled person’s experience is far more complex; each of these and other factors take place simultaneously and cannot be understood in any other way. As Carby argues for black women, the consequences of this simultaneous oppression has been to isolate black disabled people, who are rendered invisible and have no social role or image.

A marginal and invisible fraternity The image of the English propagated at the centre is, as I have already suggested above, informed by icons such as ‘the English Rose’, ‘roast beef’ and the myth of a long and ‘glorious’ imperial history. I concede that if disability is portrayed at all, the image chosen is based upon the medical rather than social model. However, it is vital to understand that the image of the English, as propagated

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by ‘new racism’, incorporates rather than excludes white disabled people. Disabled people of New Commonwealth descent, as well as black people in general, are the outsiders and the objects of comparison with this constructed norm in a way never experienced by their white disabled peers. As an illustration, here are some myths concerning black people which emphasise difference. Black people are portrayed as having alien or different cultural habits. Their families are organized in ways which are different to normal family life. Black disabled people must learn English if they are to exploit the services available. Finally, as migrants or the offspring of former migrants, the right of access to the British welfare and health services cannot be taken for granted (Levitas, 1986). These statements may appear a little crass or at least over exaggerated, but as an illustration they do serve to demonstrate an important point. Unlike white disabled people, black disabled people are not fully incorporated into this society. Instead, they are continually judged as outside or alien to this society at a range of levels (Gamble, 1974; Levitas, 1986). I suggest that it is this critical distinction which explains the feelings of marginalisation black disabled people may have from this society, including within the disability movement and ethnic minority communities. Despite a greater awareness of colour discrimination, the disability movement has failed to attract disabled people from within the ethnic minority communities in any numbers. It should never be suggested that the disability movement has in the past deliberately fostered racial discrimination. Nevertheless, despite the absence of data on black disabled people, their absence from positions of influence in the movements is marked. This may be the result of a belated recognition of the issues concerning racism. More likely, it is because the disability movement is no different to other groups which have incorporated the recent construction of the image of this society. In reality the reasons for the absence of black faces requires a far more sophisticated and a multiple explanation. The fact that black disabled people do not have a recognisable identity is only part of the story. The denial of equal access to state and private institutions requires a more detailed exploration if a more comprehensive understanding of the absence of a black disabled image is to be established. Let us look more closely at the image that has been ascribed to black disabled people. First of all, let us remind ourselves that ethnic minority communities are in the main located in the poorest inner city regions of this country (Rex & Moore, 1967). The Labour Force Survey shows that (averaged over the years 1986–88) among young people aged between 16 and 24 economic activity rates were much lower in ethnic minority groups than in the white population. Among women of working age, economic activity was highest among women of West Indian or Guyanese origin and lowest for those of Pakistani or Bangladeshi origin. Self employment was reported more frequently among employed members of the ethnic minority groups than in the corresponding white population; self employment was markedly higher among

Race and disability 299 men of Indian, Pakistani or Bangladeshi origin. In 1988, as in 1987, the rate of unemployment for the ethnic minority groups was 60% above that for the white population (Employment Gazette, 1990). With this in mind, it should also be pointed out that the proportion of manual and non manual employees in the ethnic minority group is similar to that among the white population. However, this masks significant variation within the ethnic minority population. Only one in four men of Caribbean origin compared to one in three men of Pakistani or Bangladeshi origin were non manual workers (Employment Gazette, 1990). These statistics are particularly relevant when looking at incidents of poor health and disability within the ethnic minority groups. Incidence of poor health and disability within ethnic minority groups is unknown. Yet Atkin & Rollings (1991) make the point that to explain poor health and disability without reference to the social and economic disposition of this section of Britain’s population is a serious error, if not implicit racism. I would argue, that despite the absence of relevant data, it can be inferred that poor health and impairment is a common experience with ethnic minority groups. However, due to this deficiency, observers have sought to ascribe a cultural image of disability and ill health on the ethnic minority population. For example, black health problems are explained as a deviation from the norm; from the Western eating or lifestyle norm. ‘Asian Rickets’ is a case in point. Goel et al. (1981) and Rocheron (1988) lay great emphasis upon perceived cultural influences. They suggest that changes in diet and way of living will alleviate this condition. These assumptions can only be understood as part of the process of ascribing cultural images on to ethnic minority communities by the dominant ‘centre’. To make this ascription complete requires the acceptance of ‘the new racist’ philosophy of cultural difference. Those outside the constructed image of ‘Englishness’ are perceived as alien, and are judged accordingly against an assumed consistent homogeneous western culture (Benson, 1991). In contrast, these ‘experts’ fail to emphasize the role employment, housing conditions or levels of wealth may have in influencing health within observed populations. The assumption that employment, housing and wealth can account for incidence of ill health and impairment can be easily accepted when applied to the white population. Due to the predominant assumptions about race and culture in this society, these factors are not applied so readily to the black population.

Equal access to resources? Discriminatory access to resources is another significant site of oppression with which black disabled people have to contend. Henderson & Karn (1987) have demonstrated how the allocation of finite resources—in this case housing in Birmingham—can adversely affect Britain’s ethnic minority groups. Quite simply, because this section of the community was generally the poorest, least educated, least confident and the most desperate, Henderson & Karn found that

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it was obliged to accept the worst housing or simply be turned away by local housing officials. Why was this the case? What does it tell us about the experience of black disabled people? To address the first question, Hederson & Karn have shown that the presence of bigots at the gate—those controlling housing allocation to tenants—is not the critical factor when determining the causes of unequal provision. Rather, they argue that discrimination occurs through what they call ‘social determinants of housing allocation’. This meant that housing officers, on a dayto-day basis, made decisions which were in accord with the norm in an environment of competing interest groups and scarce resources—in this case accommodation. This was exacerbated by a fundamental contradiction within Birmingham’s housing allocation office. Junior allocation officers had to fill empty houses as swiftly as possible to avoid vandalism and non-rent-producing properties. In contrast, senior officers wanted to ensure harmony on the estates for which they were responsible and so control access to housing. Unfortunately, most tenants wished to obtain suburban, rather than poor quality inner-city properties. Using their subjective judgement, these junior officers allocated the best housing to whom they assessed as ‘respectable’ or ‘choosey’. These people were less likely to accept the poorer quality inner-city accommodation. By contrast, those assessed by the same officers as ‘desperate’ for housing or ‘disreputable’ would be offered the poorer standard housing on the assumption that these tenants would be more likely to accept this housing. In both cases, these officers met their requirement to fill all their empty houses. Senior housing officers’ long-term aim was harmony among the tenants living on the estate for which they were responsible. So they regularly intervened in the allocations process to check the movement of particular tenants into and around their ‘patch’. Those most likely to fall victim to this arbitrary action were those deemed ‘disreputable’ or who may constitute a potential ‘problem’. Though the junior allocations officers sought to minimise the movement of ‘disreputable’ tenants onto ‘respectable’ estates, they did so for different reasons. The senior officers’ interest in this aspect of the process ensured that the likelihood of such an occurrence was reduced to a minimum. The result was that the categorisation of tenants was a priority for both sets of housing officers, but for different reasons. The housing allocation system in Birmingham during the 1970s exacerbated racial separation. This was because black tenants were frequently categorized as ‘disreputable’ or a ‘problem’. They regularly received poorer quality innter-city, housing. Furthermore, as black families were more desperate for housing, they would accept lower quality accommodation. The coding used by the housing officers placed negative weight to race, thereby stigmatising these families. Also they had their preferences for housing turned down more frequently if it was for a suburban estate. What does this tell us about access to resources and the experience of black disabled people? As any other group of disabled people, black individuals are dependent on local and central state for the provision of finite and strictly

Race and disability 301 limited resources. These consist of information, equipment, financial support and health care, to name four. However, the institutions that dispense these resources rely upon officers who have to use their subjective judgement to discriminate between different claims. As Evers et al. (1989) have shown, these officers will create similar subjective databases of social discrimination as those constructed by housing officers in Birmingham to discriminate between claimants. Their fieldwork has identified the existence of ethnocentric opinions grounded in racist assumptions of community health and social service practitioners. The research by Henderson & Karn and Evers et al. merely demonstrates the way in which the construction of the English identity has empowered and legitimized discrimination by resource dispensing organisations. The profound influence of this construction must not be underestimated. Not only does it legitimise racist practices, this philosophy demands that ethnic minority groups be ascribed fixed and unchanging cultural indicators. These markers then become the device with which to systematically banish black people to the margins of this society (Gamble, 1974; Levitas, 1986). Evers et al. fail to explain how these assumptions influence the way in which these practitioners dispense the resources for which they are responsible. Research in this area would need to demonstrate the link between assumptions and the potential poor treatment that black disabled people may receive. It should not be the sole objective of this research just to identify the bigots within such institutions. Nor should its priority be to solely challenge the policies of provision. Inevitably such policies will be undermined by research into the validity of the institutions’ egalitarian commitment.

Whose identity? Whose defence? So far I have sought to explain that the experience of black disabled people stems from the particular form racism has taken in this society today. This has enabled me to reason that although white disabled people also experience marginalisation, they do so as accepted members of this society. To put it simply, their experience, though in the main humiliating and oppressive, is the norm against which black disabled people—and their supposed alien experiences of impairment—are judged. I argue further that this judgement places black disabled people in jeopardy. They are ascribed an identity, perceived as outsiders and assumed to ‘suffer’ from alien cultural practices; which are assumed to account for their incidence of impairment. The result is that black disabled people’s access to services and support is compromised. I now want to address the final part of my argument, namely that the identity of black disabled people is also informed by their separation from the wider ethnic minority community. Yet, again, this experience can only be understood within the context of the particular form of racism which is now predominant in Britain today. I shall argue that what isolates black disabled people from their

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able-bodied peers is the various responses that ethnic minority communities have adopted in this climate of racism. From the perspective of the ethnic minority population. British society is a very peculiar environment. It is clear that the black population makes an important contribution to British culture and economy. However, ‘the new racism’ as expressed by immigration laws, ex-Prime Ministerial concern about ‘swamping’ and the systematic exclusion of blacks from many parts of this society are the pervasive elements of the black experience. As a consequence, identity has become a vital refuge for ethnic minority families and communities. The role and nature of identity has been completely misunderstood within British academic circles. Differences between the majority and minority populations in Britain have been conceptualised in terms of cultural pluralism and ethnic diversity. Diversity in language, religion, cultural norms and expectations prevent effective communication and creates misunderstandings between these two groups (Lawrence, 1982; Pearson, 1983). To achieve harmony, therefore, requires promotion of understanding of the other’s culture. This uncritical approach to culture has created a perceived black pathology. Everything is explained through culture and contrasted with white or western norms. Culture is perceived as something constant, unchanging and unmediated by time. As a consequence, it is understood in a vacuum. Poverty, unemployment and other wider relations within society, and how they change over time, are ignored. Yet, ‘new racism’ relies upon this historically fixed and monolithic interpretation of cultural to forge a distinct identity. These ideas legitimise the claim that those of New Commonwealth descent can never be ‘English’. This raises the question of identity. By identity, I mean the symbols, indicators, practices, patterns of employment, residential patterns, etc. which set one group of people apart from others. There has also been a failure to link the evolution of one particular expression of identity with the proximity of the local environment. To understand how indentity isolates black disabled people it is critical to incorporate an understanding of the wider power relations within society. In contrast to the philosophy of ‘new racism’, an individual’s or a community’s identity is but a creation and one only relevant to the prevailing conditions (Hobsbawn & Ranger, 1983). It is also influenced by a whole range of complex, but interrelated factors; wealth, local resources, education, etc. Furthermore, as a creation, it is neither static nor monolithic. Rather, it is always evolving and changing as time and circumstances change. Though it may borrow from former cultural forms—even be given the same label as past identities—this identity can only be understood if directly related to the present (Hall, 1991). Quite simply, the adoption and exploitation of one particular image or cultural identity over another at a particular time is directly related to the prevailing social and economic environment (Gilroy & Lawrence, 1982). So, rather than worry about this or that cultural manifestation, be it a religious or eating practice, what should be of critical importance is the patterns of

Race and disability 303 disadvantage they face, such as bad housing and environment, poverty and low income, as well as social isolation, low status and lack of power over their local surroundings (Walker, 1980; Fennell et al., 1989). To this must be added the repertoire of symbols adopted by Britain’s black population. These are unfixed and still evolving but they combine to reconstruct a collective history, or identity, from the fractured histories of the African or Asian diasporas (Gilroy, 1987). To take a simplistic example; during the 1970s one of the most significant cultural forms to influence black British youth was Jamaican reggae, and its ideological component, Rastifarian culture. The attractiveness of this cultural form, as expressed by Bob Marley, was its political language, symbols and meanings relevant to the social movements for emancipation and equality taking place in Britain at that time (Hebdige, 1983). It mattered little that Bob Marley was expressing the experience of life in early 1970s Jamaica. His message became a metaphor for life in the inner city for the urban young—black and white (Gilroy, 1987; Hall, 1991). Yet this ‘capture’ of reggae is part of a complex process of adoption and transformation which is taking place in Britain even today. It is evidence of syncretic qualities of diaspora culture and black British cultural identity in particular (Benjamin, 1984). This identity may at times be expressed in the form of powerful cultural forms. It is, however, grounded in the harsh reality of racism and poverty which is the experience of the majority of this society’s ethnic minority population. I question whether black disabled people can benefit or actively participate in the reconstruction and assertion of a black identity in the face of ‘new racist’ ascription. ‘To be of worth’ is a principal symbol which is empowering within any community, within the family. Yet high unemployment and the marginal position ethnic minority communities occupy in Britain has meant that the expected roles of worth within the family—employment, clothe and feed offspring, etc.—have been threatened. New roles have had to be constructed to empower individuals within the family. Self-employment, for example, has played the key function of providing male employment and self esteem within ethnic minority communities. From the Labour Force Survey it is clear that this form of employment has been predominant within these communities (Employment Gazette, 1990). The role of women, whether it is the predominance of Afro-Caribbean women in the labour force or the absence of certain groups of women of South Asian descent, is predetermined by their particular subscribed role. The structure of inclusion and exclusion has forced ethnic minority populations to adopt certain patterns of employment. These patterns have coalesced around manual labour or retail ownership owner. Whatever the form it has taken, this form of employment has provided local community esteem (Shaw, 1989). Just as important, these forms of employment has provided the first building block in the construction of identity. In contrast, the reliance upon the state, limited employment opportunities

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open to the black population and the inability to contribute resources to the family renders black disabled people powerless within the family. Fierce competition for the few employment opportunities open to disabled people means that employment is hard to obtain. Furthermore, they are vulnerable to oppressive ascription by the resource providing state organisation. In sum, each of these situations become social barriers which confirm and compound the enfeeblement of black disabled people. The perceived inability of individuals within ethnic minority communities to adopt subscribed role due to disablement will not inevitably result in isolation or rejection by the family. It is also not my intention to provide an excuse for bigots to blame the unique position of black disabled people on a supposed pathology within black families. In order to refute this argument it is important to understand the context within which black disabled people must live. The reconstruction of black identity is, in the main, a response to the prevailing conditions in this society. However, like other constructions, the image of disability is absent. At best, the rehabilitation of the black identity has gone hand in hand with a lack of criticism of medical model of disability. It is, as a consequence, quite easy to understand why black disabled people have no image and are enfeebled within their own communities.

Conclusion It is not my intention to provide a complete explanation of black disabled people’s experience. What I want to do is drag the debate out of the rhetorical pit in which the discussion of this experience appears to have fallen. As a consequence, I have tried to identify the basis of modern racism in Britain today. With this in mind, I argue that ‘new racism’ has confined black communities to the margins of this society. Unlike other sections of society in a similar situation, black people are systematically portrayed as outsiders and interlopers. This ascription creates a clear cleavage between the relative experience of black and white disabled people. It also reinforces my belief that being a black disabled person is not a ‘double’ experience, but a single one grounded in British racism. I suspect that many readers will interpret my call for the construction of a separate and distinct identity for black disabled people as a call for separatism. On the contrary, I think the marginal position of black disabled people within their respective communities makes this a very dangerous option indeed. The persistence of the medical role of disability throughout this society means that the cohesion the disability movement has provided is vital. However, what I do call for is an acknowledgement that black people do indeed endure a specific experience as disabled people. Research to aid our understanding of this experience ought to include three areas. The role played by all kinds of organisations representing disabled people must be examined. In particular, attention should be paid to the degree in

Race and disability 305 which ‘new racist’ ideas have been inculcated. The critical role of administrators who dispense finite and minimal resources to disabled people and how they discriminate between claimants is the second potential area of oppression for black disabled. Finally, research priority ought to reveal what identity has been ascribed to black people within the context of British racism. This ascription has played a central part in isolating black disabled people.

Note 1 Throughout this paper I have used the term ‘black’ to describe people of New Commonwealth origin in the UK and including people of Arabic, Vietnamese or Chinese origin.

References Atkin, K. & Rollins, J. (1991) Informal Care and Black Communities (York, Social Policy Research Unit, University of York). Barker, M. (1981) The New Racism (London, Junction Books). Benjamin, P. (1984) The Afro-American musician: messenger of a unique sensibility in Western culture, in: Views on Black American Music, no. 2, 1984–85, proceedings of the 12th and 13th Annual Black Musicians’ Conference, Amherst, University of Massachusetts. Benson, S. (1991) Asians have culture, West Indians have problems: discourses in race in and outside anthropology, paper given at St Antony’s College, University of Oxford, 23 May. Carby, H. (1982) Black feminism and the boundaries of sisterhood, in: CCCS (Ed.) The Empire Strikes Back: race and racism in 70s Britain (London, Hutchinson). Confederation of Indian Organizations (1987) Double Bind: to be disabled and Asian (London, Confederation of Indian Organizations). Employment Gazette (1990) Ethnic origins and the labour market, March, pp. 125–137. Evers, H., Badgers, F., Cameron, E. & Atkin, K. (1989) Community Care Project Working Papers (Birmingham, Department of Social Medicine, University of Birmingham). Fennell, G., Phillipson, C. & Evers, H. (1989) The Sociology of Old Age (Milton Keynes, Open University Press). Gamble, A. (1974) The Conservative Nation (London, Routledge & Kegan Paul). Gilroy, P. (1987) ‘There Ain’t No Black in the Union Jack’: the cultural politics of race and nation (London, Hutchinson). Gilroy, P. & Lawrence, E. (1988) Two-tone Britain, black youth, white youth and the politics of anti-racism, in: H. S. Bains & P. Cohen (Eds) Youth in Multi-racist Britain (London, Macmillan). GLAD Conference (1988) Race and disability: a dialogue for action, London Disability News, July/August 1991, report on Brent Black Disabled People’s Conference, September. Goel, K.M., Sweet, E.M., Campbell, S., Attenburrow, A., Logan, R.W. & Arneil, G.C. (1981) Reduced prevalence of rickets in Asian children in Glasgow, Lancet, i, pp. 405–407. Hall, S. (1991) The invention of an Afro-Caribbean identity, Walter Rodney Memorial Lecture, University of Warwick, October.

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Harris, A. (1971) Handicapped and Impaired in Great Britain (London, HMSO). Hebdige, D. (1983) Ska tissue: the rise and fall of two tone, in: P. Simon & S. Davis (Eds) Reggae International (London, Thames & Hudson). Hendersen, J. & Karn, V. (1987) Race, Class and State Housing: inequality and the allocation of public housing in Britain (London, Gower). Hobsbawn, E. & Ranger, T. (1983) The Invention of Tradition (Cambridge, Cambridge University Press). Lawrence, E. (1982) In the abundance of water the fool is thirsty: sociology and black pathology, in: CCCS (Ed.) The Empire Strikes Back: race and racism in 70s Britain (London, Hutchinson). Levitas, R. (1986) The Ideology of the New Right (Oxford, Polity Press). Morris, J. (1992) Personal and political: a feminist perspective on researching physical disability, Disability, Handicap & Society, 7, pp. 157–166. Oliver, M. (1990) The Politics of Disablement (London, Macmillan). Pearson, M. (1983) The politics of ethnic minority health studies, Radical Community Medicine, 16, pp. 34–44. Rex, J. & Moore, R. (1967) Race, Community and Conflict (London, Routledge & Kegan Paul). Rocheron, Y. (1988) The Asian mother and baby campaign: the construction of ethnic minorities, Health Needs’ Critical Social Policy, 22, pp. 4–23. Shaw, A. (1989) A Pakistani Community in Britain (Oxford, Oxford University Press). Walker, A. (1980) The social creation of poverty and dependency in old age, Journal of Social Policy, 9, pp. 172–188. Wood, P. (1981) International Classification of Impairments, Disabilities and Handicaps (Geneva, WHO).

19 Disability studies as ethnographic research and text Research strategies and roles for promoting social change? John M. Davis Research Unit in Health and Behavioural Change, University of Edinburgh

Abstract This paper problematises the notion of research production within disability studies by comparing literature on emancipatory research with concepts of reflexivity, authority and empowerment employed within ethnographic research. It critically examines a number of proposals within disability studies on how researchers can stimulate or contribute to processes which improve their respondents life conditions. A variety of strategies for change are discussed within the context of how ethnographers do fieldwork, and write up and disseminate their findings. This discussion also questions the role of the researcher and respondent as ‘expert’, suggesting that ethnographers should not privilege their own perspectives over that of respondents. It is concluded that the variety of research strategies and roles outlined in this paper need not be mutually exclusive and therefore, that there are a number of different yet complementary ways in which researchers can contribute to the conditions within which self-emancipation flourishes.

Introduction This paper critically examines the concept of emancipatory research by comparing it to ethnographic writing on reflexivity1 and cultural exchange (Campbell, 1995). It draws ideas from a form of post-structural ethnography (Denzin, 1997), which is concerned with issues of authority and empowerment. The call within disability studies for researchers to change the power relationships of the research process is examined within the context of the role researchers adopt when collecting data ‘in the field’, and their responsibilities in respect of how they write up and disseminate their findings.2 This examination is followed by a critical review of a variety of strategies which might help researchers to stimulate or contribute to processes of change which may enable respondents to improve their life conditions. It is concluded that their are number of different yet complementary research strategies and roles that enable the researcher to support disabled people in their fight against oppression.

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Challenging the social relationships of research production in the field In disability studies it is asserted that disabled people should be considered experts on their own lives, needs and feelings, and therefore, that those who do research with disabled people should allow disabled people to play an active part in shaping the course of research projects (Barnes, 1992; Stone & Priestley, 1996). These aspirations can be supported by writing in anthropology on ethnography. Some anthropologists argue, in keeping with Barnes (1992) and Oliver (1992), that participatory research does not automatically lead ethnographers to learn about people’s culture. Just being there, observing, is not enough (Okely, 1975). It is believed that to learn about another person’s culture researchers have to participate in a two-way exchange/clash of beliefs. Even if this process involves disagreement or conflict, it still enables both parties to understand their similarities and differences (Geertz, 1973; Rabinow, 1977; Rorty, 1980; Marcus & Fisher, 1986; Campbell, 1995). Here, the researcher self contains academic and personal values (Okely, 1975; Giddens, 1976, 1987; Campbell, 1995) and possibly, as is suggested in disability studies, a fusion of personal and academic politics: I support the cause of disability rights, I support the principle of self organisation and I support the disability movement. This is an ethical or a political position, which informs everything I do, professionally and personally. I think it is clear from my published work that I am not a disinterested observer, but a participant in the process I describe. (Shakespeare, 1996; p. 117.) The cultural exchange form of ethnography supports the aims of emancipatory research because the researcher is required to be a reflexive participant.3 This changes the everyday relationships of research because it provides countless possibilities for the ethnographer to provide his/her respondents with the opportunity to question his/her analysis. The researcher’s and the respondents’ assumptions and interpretations are subjected to daily review. This process complements the contention that disabled people should be able to influence the direction of a research project (Barnes, 1992; Oliver, 1992; Stone & Priestley, 1996). By exchanging interpretations of the same occurrence, the ethnographer enables the respondents’ ideas to shape the next stages (questions to be asked, situations to observe/experience, roles to be adopted, etc.) of the ethnography. Within this context, Asad (1986) defines the ethnographers role as that of learner. This position requires the researcher to be a respectful initiant who analyses how his/her behaviour fits in with those of his/her teachers and how it does not. That is, in ethnography, the process of learning involves constant scrutiny of the ethnographer (Pratt, 1986; Okely, 1994), which allows for the

Ethnographic research and text 309 researcher’s effect on a fieldwork setting to be examined as a source of cultural understanding (Crapanzano, 1986). There has been much criticism of early anthropologists who did not explain how such things as the exchange of gifts affected their relationship with respondents (Pratt, 1986); did not include their own experiences in their ethnographic writings (Crapanzano, 1986), or failed to explain the power relationships between themselves and respondents (Asad, 1986; Rabinow, 1986). It is argued that in the past many ethnographers falsely claimed to be neutral observers in order to preserve their authority (Crapanzano, 1986). Now, the ethnographer is expected to examine, throughout fieldwork, his/her own subjectivities as the basis from which to understand other people’s cultures. This expectation has resulted in calls on researchers to explain the research roles they adopt and to reflexively analyse their role in actually producing research findings. Okely (1994) describes ethnography as a constant reflexive process in which reworking and re-understanding of observations and experiences eventually leads to a story which represents the interaction between the culture of the ethnographer and the cultures of those he/she has studied. This process is not carried out to obtain a value free perspective, as is suggested by some phenomenologists (e.g. Phillipson, 1972), rather it is used to understand the researcher, and the respondents subjectivities, their beliefs and their ways of looking at the world (Corker, 1999b). It is suggested that this process works best when researchers avoid getting hung up with existing theories concerning their work. This is not to say that the ethnographer has no theoretical perspectives. Rather, that they should not hang on to sacred cows because this may restrict the ethnographer’s ability to develop understandings and meanings, which eventually have a relationship with theory: The anthropologist despite months of literature reviews, possibly years of theoretical and comparative reading, will have to eject hypotheses like so much ballast . . . The ethnographer must, like a surrealist, be disponible (cf. Breton 1937), and open to objects trouves, after arriving in the field! (Okely, 1994; p. 19.) The ethnographer who begins ethnographic research with the aim to test theory or privileges one theory over another, makes his/her ability to deal with ‘objets trouves’ problematic. In terms of disability research, this suggests that all models of disability (medical or social) should be reflexively challenged by researchers and that the role of disability researchers should not be to fit their findings to any specific model. Indeed, in disability studies, the privileging of the ‘social model’ by researchers has been criticised on the basis that the theory may not necessarily be part of the research participants own understanding of disability (Stone & Priestley, 1996; Priestley, 1997) and on the basis that it may inhibit the work of

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the researcher (Shakespeare, 1997). By insisting on researchers adopting the social model, emancipatory research may restrict the intellectual freedom of the researcher, and their capacity to interpret the worlds and cultures of others. This view is similar to that of some anthropologists who argue, in support of Foucault, that ideology can be as constraining an epistemology as positivism (Rabinow, 1986). Indeed, Corker (1999a,b) argues that the social model should be viewed as one strand of an emerging social theory. Corker’s views build on Oliver’s assertion that the social model is but one aspect of a social theory of disability and that the aim of research should be to represent disabled peoples’ lives from their own perspectives (Oliver, 1996). This position complements that of anthropologists who argue that respondents’ beliefs should not be represented as wrong because they differ from those of the anthropologist (Asad, 1986; Rabinow, 1986). That those beliefs should not be patronised by being revered for their simplicity (Rosaldo, 1986). In relation to disability studies, this suggests that respondents who do not ally themselves overtly to a social model perspective should not be thought of as exhibiting signs of false consciousness. Their beliefs and practices should be attributed as much importance as any other disabled person. Otherwise, we run the risk of replicating within our field the very systems of exclusion and censorship that, it is claimed, exist within medical model driven research. Indeed, some have raised concerns regarding the manner in which disabled accademics presently police the social model (Thomas, 1998). This issue also raises specific problems for those who argue that researchers should put their research skills at the disposal of disabled people (Barnes, 1992). It begs the question, which disabled people? Are we to exclude those disabled people who do not accept a specific social model of disability? This same argument can be used in respect to respondent validation. It is argued that disability researchers should feed back research findings to their respondents so that they may guide the researcher’s end text (Barnes, 1992; Stone & Priestly, 1996). These ideas challenge the assumption that only the researcher analyses data (Priestley, 1997). It has been suggested that asking respondents to comment on drafts of a final text can contribute to emancipatory objectives.4 Although this is a quite reasonable request, it should be noted the feedback of research findings does not totally disperse the authority of the researcher where the researcher writes the final text (Shakespeare, 1996). Also, some sociologists employ triangulation or member validation in an attempt to validate their ethnographic research (see Glaser & Strauss, 1967; Hammersley & Atkinson, 1983). However, these techniques do not act as a means of validation rather, they merely allow researchers more reflexive moments: It is the researcher’s interests and systems of relevance that will determine the practical limits of his or her analysis (Schutz 1970). Techniques of validation provide valuable additional material for analysis and perform further

Ethnographic research and text 311 useful functions (such as easing research access), but they do not set the bounds of the analytical task. Those bounds are set not by any technical tests or procedures, but by a mix of relevances stretching from the researcher’s own intellectual curiosity and scrupulousness to external constraints such as funding limits, supervisory stipulations and (not least) publishing deadlines. (Bloor, 1997, p. 50.) Even when researchers obtain comments from respondents regarding their text, they still choose which of the respondents responses influence the final story and which are ignored. Indeed, this process is no different from the earlier process of selecting and interpreting data to form a text. Hence, a more achievable objective may be to ask researchers to explain their motivations for choosing one data example or type of explanation, over another (Hammersley, 1990). This approach may help us follow the reflexive process through which the ethnographer learns about another culture. Some in disability studies argue against member validation for different reasons:5 I was not, and am not, prepared to let other people control what I write or dictate the appropriate political stance. In this project there was not enough time or resources to enable people to check over the text or comment on it. While I would always welcome advice and feedback, I’m not sure I’d ever want to be accountable to anyone other than my publisher and my conscience. (Shakespeare, 1997, p. 186.) What ever the objection, the issue of authorial control, appears to be a red herring. In an ethnography, the researcher may encounter hundreds of respondents, could they all be asked to be authors? Someone or a small group would mostly likely act as author. This person or group would be subjected to the same pressures as a researcher. They would be writing about people who are similar and different to themselves. They would be open to the same criticisms concerning authority and how they represented the people in their text. Hence, who ever the author, a more important appraisal may be, how relevant a research project is to disabled people. That is, can it contribute to processes of change which improve people’s lives?

Strategies for change Researchers have been encouraged to ask themselves whether their work is relevant to disabled people and their organisations and whether it will improve the lives of respondents (Stone & Priestly, 1996, p. 703). The following sections discuss this issue in relation to three theoretical approaches to doing research. This discussion leads to an examination of the different ways that researchers influence the world within which they work.

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Structural change The Union of the Physically Impaired Against Segregation (UPIAS, 1976) argued, after Paul Hunt (1966) and Vic Finkelstein (1975), that disability should be seen as ‘caused by a contemporary social organisation’. In Britain, this has led to the call for change in the way society is structured primarily in the area of rights and citizenship. It has been powerfully employed as a banner under which disabled people and others can unite to fight off their oppressors. Specifically, in the research arena, Barnes (1996) has employed this perspective as a basis from which to call on academics to choose which side of the barricade they are on: If disability research is about researching oppression, and I would argue that it is, then researchers should not be professing ‘mythical independence’ to disabled people but joining with them in their struggles to confront and overcome this oppression. Researchers should be espousing commitment not value freedom, engagement not objectivity, and solidarity not independence. There is no independent haven or middle ground when researching oppression: academics and researchers can only be with the oppressors or with the oppressed. (Barnes, 1996, p. 110.) Whilst calling for, ‘the systematic demystification of structures and processes which create disability’, Barnes (1992, p. 122) creates a discourse of them and us, oppressed and oppressors. It cannot be denied that the physical, material and social organisation of our society promotes inequalities, and withholds rights and resources to some groups. Nor, can it be disputed that this should be an important topic for researchers to investigate. However, this discourse talks of oppressed and oppressors as if they are homogenous groupings. By creating ‘them’ and ‘us’ groups these writers reduce the importance of people as social actors, reifying the role of structure and ignoring the diverse ways in which individuals and social groups relate to and resist such structures. Similarly, in anthropology, Geertz (1973) is criticised for only constructing a single generalised version of Balinese culture. That is, he is accused of constructing homogeneity where there may have been diversity (Crapanzano, 1986). Many anthropologists, represent one voice (their own) or two (their own and the ‘voice’ of the ‘other’ in their final text (Clifford, 1986). The cultural diversity of a group/society is ironed out as the anthropologist illustrates a single generalised version of their ‘culture’ (Crapanzano, 1986). It has been argued that this process is interlinked with the tendency of some anthropologist to claim an ‘I was there’, ‘This is how they are’ authority for their writing (Asad, 1986).

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Counter hegemonic writing In opposition to generalised views of culture, a new (or not so new, Campbell, 1996) way of writing has been proposed in anthropology that represents the contrasting and conflicting relations between individuals who inhabit a social location (Marcus, 1986). It has been referred to as, ‘polyphonic co-operative story telling’ (Tyler, 1986), ‘multi-dimensional textualisation’ (Fischer, 1986), ‘heteroglossia’ (Bakhtin, 1986; Rabinow, 1986) and ‘multi-verisimilitude’ (Denzin, 1997). The suggestion is that anthropology should not only be interested in cross-cultural comparisons of differences between cultures, but should recognise difference and conflict within cultures (Willis, 1977; Fischer, 1986; Marcus, 1986). It is believed that anthropologists can listen to the different voices6 they encounter in the field, that the people they encounter may hold conflicting perspectives on the same phenomena and that there may be multiple competing versions of what constitutes ‘the real or the truth’. Here, dispersal of the anthropologist’s authority is thought to be achieved by offering readers a choice of a number of different perspectives, sub-cultural values, or voices in the final text. This process need not involve the authors voice being completely excluded, rather the author points to different competing voices which conflict with his/her own (Fisher, 1986). That is, the authority of the writer is dispersed, not by letting others actually write the final text, but by letting their variety of voices have equal authority. Interestingly, this process may be complemented by research projects which are carried out by a team of academics. Here, not only can ethnographic texts include the different voices of respondents, but they may include, in the case of multi-authored projects, the different voices of researchers (Corker & Davis, 1998). The strength of this approach is that it can create the space through which a variety of people empower themselves (readers and researched) by legitimising their different everyday experience. Some in disability studies have written this type of text from interview data: We thought of our audience as a broad one: lay readers, academics, professionals, but most of all disabled people. We hoped that disabled people would recognise their own experiences and would feel vindicated by the accounts we published. We placed the research within our broader understanding of empowerment, which for us is as much about personal and emotional developments as it is about political and structural change: in the book, and in our professional work, we balanced a need for barrier-removal and civil rights, with a need to support individuals to develop a more positive self-image and sense of pride and self-worth. (Shakespeare, 1997, pp. 184–185) Here, the researcher is supporting a process of change by challenging stereotypes and legitimising the different life experiences of disabled people. Corker

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(1999c), drawing upon Bakhtin’s ideas about ‘heteroglossia’ and ‘speech genres’ (1986), talks very specifically about the disabled author being reborn as a speaker, in a social context, who produces narratives that embrace both an individual and collective perspective. Corker states: In other words those of us who have an interest in discourse are not waging war on the social model. We are encouraging its reflexive use, but more importantly, we are engaged in a different kind of production—the liberation and acceptance of silent ‘voices’, new knowledges, and therefore a greater range of positions from which disabled people can subvert hegemony and act in social and political arenas. (Corker, 1999a, p. 209.) Shakespeare’s and Corker’s ideas run parallel with notions concerning empowerment held by some ethnographers. Fischer (1986) argues that by representing and legitimising many voices in the same text, anthropological writing holds the potential for a powerful counter rhetoric to hegemonic political discourses. In the field of disability research this potential includes legitimising counter rhetoric to oppressive discourses. These ideas tie into the work of Morris (1992) who attempts to encourage personal liberation by representing different disabled peoples perceptions and experiences. However, this approach has its drawbacks. It is problematic where ‘difference’ is only understood in terms of macro-social categories such as age, class, gender and race, or medicalised notions of impairment. That is, where writers create homogenous groups around these categories. This sort of research only represents the common features of same age, gender, etc., people and neglects to account for differences within these groups.7 In doing so, it replicates the error of those who argue that the social organisation of society creates two groups, oppressed and oppressors, only in this case there are slightly more groups in each camp. Two further criticisms are raised by Stone & Priestley (1996). First, that by concentrating on difference, disability research may be confined to the realms of culturally relative story telling. Secondly, that notions of diversity may dilute the political strength of the disabled peoples movement and eventually, obstruct the improvement of disabled peoples lives. Therefore, within disability studies it appears that counter hegemonic writing is in polar opposition to structural strategies for change and that never the twain shall meet. However, a number of anthropologists have tried to reconcile this conflict.

Multi-level critical post-structuralism The Stone & Priestley (1996) criticisms suggests that there is a conflict between representing disabled people’s diverse lived experiences and promoting social change. Rabinow (1986) warns ethnographers to be wary of essentialising difference and seeking universal truths. He suggests we live somewhere between these two poles which he refers to as cosmopolitanism:

Ethnographic research and text 315 Let us define cosmopolitanism as an ethos of macro-interdependence, with an acute consciousness (often forced upon people) of the inescapabilities and particularities of places, characters, historical trajectories, and fates. Although we are all cosmopolitans, Homo sapiens has done rather poorly in interpreting this condition. We seem to have trouble with the balancing act, preferring to reify local identities or construct universal ones. We live in-between. (Rabinow, 1986, p. 258.) It appears the problems of essentialism and universalism can be overcome by balancing explanations of people’s everyday experiences with accounts of how those experiences are linked to wider societal influences. Marcus (1986) argues that by comparing cultures across or within areas ethnographers can learn about the systems, which influence people’s lives at the same time as representing the everyday differences of those lives (Marcus & Fischer, 1986). Similarly, Bourdieu synthesises notions of culture and structure in his concept of ‘Habitus’. It is in the relationship between the two capacities which define the habitus, the capacity to produce classifiable practices and words, and the capacity to differentiate and appreciate those practices and products (taste), that the represented social world i.e., the space of life styles, is constituted. (1986, p. 17.) He argues that it is possible to identify groups on the basis of their subscription to certain behaviour and the relationship between this behaviour and the structures within which it is embedded. He suggests that individuals tailor their behaviour to specific settings (fields), that they possess fluid identities which they draw upon to guide their actions as they move through different social settings. An excellent example of this type of text is Alan Campbell’s (1995) book, Getting to Know Waiwai. In a beautifully written text, Campbell illustrates the everyday experiences of Wayapi’ people of the Brazilian rainforest. He employs stories of everyday interaction between groups and individuals to explore their reactions to changes in their local environment, the influx of incomers to their communities, and the machinations of Brazilian governmental and global politics. Whilst breaking down uniform concepts of culture this sort of text also unpicks the concept of identity as a fixed uniform entity. In anthropology Asad (1986) has argued that we have different cultures within. In disability studies Corker points out: ‘disabled identity is embued with multiple and fluid meanings which reflect and create context’ (Corker, 1999a, p. 195). In other fields, e.g. Queer theory, writers such as Seidman (1998) resist the notion of unitary sexual identities by questioning ‘the social forces that compel selves and social relations to be organised in sexual identity terms’ (Seidman, 1998, p. 185). The suggestion is that ethnographers should be investigating uniform notions of identity, culture

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and structure, and that this investigation should enable the ethnographer to gain insight into how people respond to the individuals, structures and cultures they encounter on a daily basis. Here, problems of cultural relativism are overcome by synthesising notions of agency, culture and structure. This form of ethnography does not run the risk of weakening feelings of collectivity amongst disabled people. It offers us the chance to illustrate different peoples concepts of oppression and to gather a variety of definitions of oppression. By legitimising these different definitions the ‘movement’ will increase in number. This type of approach does not ‘assume that providing faithful accounts of individual experience is enough’ (Oliver, 1999, p. 186). Rather, it complements Oliver’s (1999) aim that research should go beyond notions of individual experience to understand collective experience. However, at the same time it recognises Corker’s (1999 a–c, p. 207) assertion, ‘that the collective itself must be tolerant of difference if it is not to reproduce this hegemony’. An important aspect of this approach is the study of people in positions of power (Rabinow, 1986). That is, researchers can learn much from investigating the social practices of those individuals and groups that disabled people encounter on a daily basis (e.g. in the case of disabled children their family, neighbours, other children and professionals in local government, health, social services and education) because it is these people, and the groups and organisations they associate with, who are most likely to inhibit the self-emancipation of disabled people. Multi-level post-structural approaches to research replace the polarisation between structural and experiential accounts of disabled peoples lives with complex accounts of people’s lives. They also afford the ethnographer the possibility of adopting a number of different roles post-fieldwork.

The researcher’s powers of influence In recent work with colleagues (Corker & Davis, 1998; Davis et al., 1999, 2000; Priestley et al., 2000), we have highlighted the benefits of employing polyphonic ethnography to achieve the dual aim of representing the different lives of disabled children, and explaining the cultural and structural contexts within which these lives are played out.8 These works attempt to identify policies which might motivate a change of culture amongst those individuals and groups who presently oppress disabled children. In support of such authors as Oliver (1992), Swain et al. (1998) and Middleton (1999) they promote a multi-level approach to change. This approach included the unpacking of moments of cross-cultural conflict: Situations where individuals vie with each other to impose their ideas of what constitutes legitimate practice (see also, for examples of this, Bourdieu, 1978; Willis, 1977; Davis, 1996, 1999). At first we perceived conflict between disabled children and adults (e.g. teachers) as group versus group conflict. We, at first, characterised the teacher–disabled child relationship as that of oppressor and oppressed. However, children taught us that not all teachers were alike and,

Ethnographic research and text 317 therefore, that their oppressors could not be neatly packaged into homogenous groups. We realised we could record disabled children’s views on good practice and good practitioners and vis versa. However, the work did not stop there. We also investigated the cultural issues (e.g. personal/group attitudes) and structural issues (e.g. training or policies), which influenced the way certain professionals treated disabled children. During this process we worked with disabled children and others to identify which structures/policies needed changing within specific settings and also which individuals/cultural groupings might inhibit innovation. By differentiating between the individuals that disabled children encountered in their daily lives, and understanding the structural and cultural pressure which those individuals experienced, we became aware that adults who are complicit in the oppression of disabled children may themselves experience oppression within their work places or social and cultural environments. Moreover, we realised that this experience may prevent them from changing how they treat disabled children. This finding suggested that the researcher’s role should not simply be to confront oppressive practices (Oliver, 1999), but also to unpick both the pillars upon which these practices are built and the vested interests which sustain them. By valuing all respondents (disabled and non-disabled) experiences and viewing them as inter-related, this form of research overcomes Oliver’s (1999, p. 187) concern that from the outset researchers create a set of social relationships in which ‘we designate disabled people as inferior’. In this form of ethnography, all respondents are viewed as possessing the potential to contribute to the improvement of disabled peoples life experiences. Corker (2000) links this idea to the writings of Bakhtin and to feminist notions of inter-dependency. She argues that Bakhtin alerts us to the possibility that, through dialogue, mutual recognition and co-understanding can be achieved in a way which enables different people (oppressors and oppressed) to grow through mutual exchange of view points. This suggests that there may be unseen connections between disabled people and their oppressors, or that the oppressors may have aspects of their ‘selves’ which can be appealed to in order to facilitate change. Hence, the first sphere of influence open to the researcher is the very locations where they do research. The researcher by practising the nonauthoritarian techniques identified at the beginning of this paper, can set an example to the people who he/she encounters in the field, he/she can encourage process of dialogue. On our recent project this meant setting an example to professionals of how they could begin to start listening to the views of disabled children.9 However, as has been documented elsewhere (Davis et al., 1999, 2000) this approach was not accepted by everyone in the research setting, and at times I and my colleagues were put under extreme pressure to change our practices. These experiences, though uncomfortable, were beneficial because they provide us with insights concerning the sort of resources specific adults could mobilise when attempting to control people or situations. This was an important learning

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process because it allowed us to gain an understanding of how these individuals would obstruct change. These insights led to the conclusion that a part of our project should involve feeding back ideas of good practice to policy makers and educators of professionals (e.g. teacher training colleges).10 That is, the next sphere of influence of the researcher involves contributing to structural and cultural change by attempting to influence the people who hold power over professionals who work at the local level. Again, it is impossible to guarantee that this information will be taken on board and mobilised in ways that actually improve disabled children’s lives, as Shakespeare explains:11 Post-structural writers have identified what they call ‘the death of the author’. By this is meant the openness of a text to multiple interpretations. While the writers may have specific ambitions and intentions, once the book is in the public domain, others are free to read into it their own values and feelings, and to use the arguments and evidence it provides to promote ends which may be contrary to the author’s intentions. There is no way round this danger. For example, free market libertarians on the Right have adopted the anti-institutional emphasis of the disability movement to argue that day centres and other provisions should be closed down. A progressive demand for autonomy and integration is converted into cuts in public services and rolling back of the state. (Shakespeare, 1997, p. 178.) The suggestion that the ethnographer cannot control how readers choose to interpret their writing is a strong one, however, it maybe overly negative. Okely (1997) points out that another consequence can be that an unintended group mobilises your work in a positive fashion, in her case New Age Travellers. The difficulty of this role is that there is a tendency for the researcher to be promoted to the position of ‘expert’ by policy makers and academic colleagues, and for researchers to be listened to before or rather than disabled people. The ethnographer ‘expert’ should only be considered to lie within his/her own field with his/her capacity to create the theoretical basis from which others actually bring about change. These texts will reach an academic and possibly wider audience and might also include acting as a policy adviser (Okely, 1997). Here, again, the ethnographer is afforded expert status by policy makers, nongovernmental organisations and fellow academics. Again, this role can be problematic if the ethnographer allows his/her own feelings of self importance to overshadow the fact that disabled people are the ultimate experts on their own lives. This role is especially doubtful where the researcher chooses to reinforce academic convention, rather than account for data that is theoretically troublesome. In our recent ‘Life as a Disabled Child’ project we have worked against the majority of textual representations of disabled children’s lives. This has led us to

Ethnographic research and text 319 counter discourses which characterise disabled children as passive and vulnerable (for an analysis of these discourses see Priestley, 1998; Shakespeare & Watson, 1999). We have demonstrated disabled children’s capacity as social agents and illustrated the fluid ways in which they negotiate their cultural and structural experiences. In this role, ethnographers can write alone or with other members of their team to produce publications for a mostly academic audience. This role involves the ethnographer staking their academic integrity on how other academics respond to their work. An alternative approach involves the ethnographer working with their respondents. Here, the ethnographer exchanges their knowledge with disabled people in the hope that it will contribute to their fight against oppression. This approach may mean that the researcher becomes an activist in the foreground of a political struggle (Okely, 1997) or that the researcher works in the background to support/advise disabled people on where best to target their resources. Recently, this sort of role has involved us working on a voluntary advisory basis with a group of disabled adults and children at Access-ability Lothian. Here, our findings have been employed to support this organisation’s aim to improve disabled children’s experiences of mainstream schooling. This organisation does not need a researcher to talk on its behalf, rather it draws together the ideas of a variety of people as the basis from which to support a group of disabled children in their aim to improve their own life conditions through, amongst other approaches, peer education. Here, disabled children are active agents capable of stimulating processes of change and the researcher and other adults are helpful, but discrete allies. The above roles are not mutually exclusive, each is valuable in its own way. It is up to the ethnographer to decide or justify which they choose to enact. Once this choice has been made others, e.g. their respondents, can comment on how valuable their contribution has been.

Conclusions This paper draws on literature from within disability studies and anthropology to argue that researchers, when investigating disabled peoples lives with the aim of promoting social change, may benefit from: • •

• • •

Being reflexive in the field about how their own perspectives influence this process. Explaining how power relationships are negotiated within the course of their fieldwork and what steps are taken to reduce the authority of the researcher. Making obvious the process through which they choose to represent peoples lives in text. Illustrating the diverse and fluid nature of the world they have investigated. Investigating the interplay of agency, culture and structure (material and social) within people’s daily lives.

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It has been argued that ethnographers can make an important contribution to disability studies by breaking down the ‘them and us’ characterisation of oppressors and oppressed. That by unpacking homogenised views of culture and recognising the fluid nature of identity, ethnographers can help to stimulate the type of dialogue and mutual recognition between disabled people and others called for by Corker (1999a). Crucial to this approach is the investigation of the relationship between individual, cultural and structural issues. That is, social scientists may only be able to contribute to the creation of the cultural and structural conditions within which self-emancipation flourishes when they recognise that culture and structure are embodied and expressed in everyday social practice. A variety of theoretical perspectives have been employed as the basis from which to examining how researchers can contribute to social change. Central to this discussion has been the concept that respondents are the experts on their own lives but that ethnographers possess expertise which can be utilised in a variety of ways to contribute to processes of change. This expertise lies in their ability to produce writing which counters hegemonic discourses and their capacity to represent the complexity of peoples lives through recognising the importance of individual experience, culture and structure. By promoting a multi-level approach to disability studies, this paper has argued that there are many ways for researchers to contribute to processes of change and that these approaches are not necessarily mutually exclusive.

Acknowledgements I would like to thank Mairian Corker, Sarah Cunningham-Burley, Nick Watson and the anonymous reviewers for their helpful comments on earlier drafts of this paper.

Notes 1 For discussion of reflexivity see Okely & Calloway (1992), Hertz (1997), Davis et al. (1999) and Corker & Davis (1998). 2 This paper does not discuss the question of whether research with disabled people is better carried out by researchers who have a medically defined impairment, because the ideas and suggestions made here would apply equally to impaired or nonimpaired ethnographers. However, the author recognises that academic cultures discriminate against certain groups within society (including disabled researchers) and that unacceptable barriers prevent many of the members of such groups from gaining the opportunity to become researchers within the ‘academy’. 3 See Davis (1998) and Davis et al. (1999a,b) for a discussion of this process in relation to research with disabled children. 4 See Zarb (1992; p. 136) for an outline of the positive aspects of this process. 5 It should be noted that calling for researchers to have intellectual freedom is not the same as stating their ideas cannot be questioned, or affected by those they study or others. 6 It should be noted that here the term ‘voices’ refers to verbal and non-verbal communication including sign and body language.

Ethnographic research and text 321 7 See Davis (1998) for a discussion of this issue with regards to the ‘new sociology of childhood’. 8 Though in this section I sometimes employ the collective ‘we’, it should be noted that the ideas put forward here are my own perceptions and memories of our research experiences. 9 Least this should sound too patronising, it should be understood that many of the adults we encountered were already capable of doing this and many of the children would not allow their views to be ignored. 10 This has involved speaking at teacher training colleges and conferences such as the ‘Special Citizens’ conference held by Children in Scotland. 11 See also in anthropology Clifford (1986).

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Ethnographic research and text 323 Okely, J. (1994) Thinking Through Fieldwork, in: A. Bryman & R.G. Burgess (Eds) Analysing Qualitative Data, pp. 18–36 (London, Routledge). Okely, J. (1997) Some political consequences of theories of gypsy ethnicity: the place of the intellectual, in: A. James, A. Hockey & A. Dawson (Eds) After Writing Culture, pp. 223–243 (Routledge, London). Okely, J. & Callaway, H. (Eds) (1992) Anthropology and Autobiography (London, Routledge). Oliver, M. (1992) Changing the social relations of research production, Disability Handicap & Society, 7, pp. 101–114. Oliver, M. (1996) Understanding Disability: from theory to practice (Basingstoke, MacMillan). Oliver, M. (1999) Final accounts and the Parasite People, in M. Corker & S. French (Eds) Disability Discourse, pp. 183–191 (Buckingham, Open University Press). Phillipson, M. (1972) Phenomenological philosophy and sociology, in: P. Filmer (Ed.) New Directions In Social Theory, pp. 119–131 (London, Collier & MacMillan). Pratt, M. (1986) Fieldwork in Common Places, in: G.E. Marcus & J. Clifford (Eds) Writing Culture: the poetics and politics of ethnography (Berkeley, University of California Press). Priestley, M. (1997) Whos research? a personal audit, in: C. Barnes & G. Mercer (Eds) Doing Disability Research, pp. 89–106 (Leeds, Disability Press). Priestley, M. (1998) Childhood disability and disabled childhoods: agendas for research, Childhood, 5, pp. 207–233. Priestley, M., Corker, M. & Watson, N. (2000) Unfinished business: disabled children and disability identities, Disability Studies Quarterly, 19, (forthcoming). Rabinow, P. (1977) Reflections on Fieldwork in Morocco (Berkeley, University of California Press). Rabinow, P. (1986) Respresentations as social facts: modernity & post-modernity in anthropology, in: G.E. Marcus & I. Clifford (Eds) Writing Culture: the poetics and politics of ethnography, pp. 234–261 (Berkeley, University of California Press). Rorty, R. (1980) Philosophy and the Mirror of Nature (Princeton, Princeton University Press). Rosaldo, R. (1986) From the door of his tent: the fieldworker and the inquisitor, in: Marcus, G.E. & Clifford, J. (Eds) Writing Culture: the poetics and politics of ethnography, pp. 77–97 (Berkeley, University of California Press). Schutz, A. (1970) On Phenomenology and Social Relations (Chicago, IL, University of Chicago Press. Seidman, S. (1998) Are we all in the closet? Notes towards a sociological and cultural turn in queer theory, European Journal of Cultural Studies, 1, pp. 177–192. Shakespeare, T. (1996) Rules of engagement: doing disability research, Disability & Society, 11, pp. 115–119. Shakespeare, T. (1997) Researching disabled sexuality, in: C. Barnes & G. Mercer (Eds) Doing Disability Research, pp. 177–189 (Leeds, Disability Press). Shakespeare, T. & Watson, N. (1999) Theoretical perspectives on research with disabled children, in: C. Robinson & K. Stalker (Eds) Growing Up With Disability, pp. 13–28 (London, Jessica Kingsley). Smith, D.E. (1990) The Conceptual Practices of Power: a feminist Sociology of knowledge (Toronto, Toronto University Press). Stone, E. & Priestley, M. (1996) Parasites, pawns and partners: disability research and the role of non-disabled researchers, British Journal of Sociology, 47, pp. 699–716.

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Swain, J., French, S. & Gillman, M. (1998) Confronting Disabling Barriers: towards making organisations accessible (Birmingham, Venture Press). Thomas, C. (1998) The body and society: impairment and disability, paper presented at the BSA Conference Making Sense of the Body, University of Edinburgh, 7 April 1998. Tyler, S.A. (1986) Post-modern ethnography: from document of the occult to occult document, in: G.E. Marcus & I. Clifford (Eds) Writing Culture: the poetics and politics of ethnography, pp. 122–140 (Berkeley, University of California Press). Union of the Physically Impaired Against Segregation (UPAIS)/Disability Alliance (1976) Fundamental Principles of Disability (London, Methuen). Willis, P. (1977) Learning to Labour (Aldershot, Gower). Zarb, G. (1992) On the road to Damascus: first steps towards changing the relations of disability research production, Disability, Handicap & Society, 7, pp. 125–138.

20 Normalisation, emancipatory research and inclusive research in learning disability Jan Walmsley School of Health and Social Welfare, The Open University

Abstract In this article I set out to trace the influence of two major sets of ideas: normalisation/srv, and the social model of disability on inclusive research in learning disability. The argument is that normalisation set the agenda for learning disability research for two or more decades. Inclusive researchers continue to apply normalisation thinking to work with people with learning difficulties, particularly in assuming the role of advocate—offering people the opportunity to take on valued social roles and assuming responsibility for promoting positive images. Latterly, a number of researchers have tried to rise to the challenges posed by emancipatory research, particularly in attempting to find ways to put people with learning difficulties in control. This illustrates the influence of thinking emanating from disability studies. However, the paper shows that whilst some ideas from emancipatory research have been applied in learning disability, there are debates in the disability literature that have not been addressed in learning disability research to date. The result is that inclusive research in learning disability is in danger of being marginalised, both in the context of disability studies and in the context of the broad sweep of learning disability research.

Introduction In this article I reflect on the development of inclusive research with people with learning difficulties. The paper focuses on the way normalisation/social role valorisation and emancipatory research have influenced inclusive research in learning disability. It is important to acknowledge that these are not the only influences—one could readily cite feminist ideas, for example, or ‘new paradigm research’. I do not attempt to cover those here. ‘Inclusive research’ is a term used here to refer to a range of research approaches that have traditionally been termed ‘participatory’ or ‘emancipatory’, broadly speaking research in which people with learning difficulties are involved as more than just research subjects or respondents. Introducing a new term may seem to create unnecessary complications. However, it has the advantage of being less cumbersome and more readily explained to people

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unfamiliar with the jargon and nuances of academic debate, including people with learning difficulties. Research which includes people with learning difficulties as active participants is now fairly common. It has been fostered by ideologies such as normalisation and the social model of disability. It has been influenced by the arguments for qualitative research methods in social science largely promoted by feminists (see Gluck & Patai, 1991). It has been stimulated by the critiques self advocates make of traditional research relationships (Aspis, 2000). It has also been encouraged by funders such as the UK-based Joseph Rowntree Foundation, which requires applicants to demonstrate that their proposals incorporate strategies to actively involve people with learning difficulties. People have taken on diverse roles such as co-researchers (March, 1997), interviewers (Williams, 1999), advisors (Atkinson & Williams, 1990; Stalker, 1998), life historians (Rolph, 2000) and autobiographers (Atkinson & Walmsley, 1999). The development of inclusive research in learning disability was uniquely a feature of the late twentieth century. There is no evidence that, before the work of Robert Edgerton in the 1960s, anyone had tried to access or represent the voices of people with learning difficulties in research terms. The field had been dominated by eugenics, psychology, educational studies and medical investigations, in which people with learning difficulties were tested, counted, observed, analysed, described and frequently pathologised, but never asked for their views. That researchers began to view people with learning difficulties as potentially active contributors can be largely attributed to normalisation, ideas developed in Scandinavia, and the United States during the 1960s and 1970s. Normalisation developed in response to evidence of poor conditions of life in large scale institutions which were the pre-eminent solution to the perceived ‘problem’ of mental deficiency in Western Europe, North America and Australasia in the early twentieth century. Normalisation ideas were developed by non-disabled academics and professionals without the participation of people with mental retardation/handicap (see, for example, Wolfensberger & Tullman 1989), an aspect that has been criticised as being uninformed by people themselves (see Oliver, 1990). However, given the almost universal silencing of the voices of people with learning difficulties at the time it is hard to see how any widespread change could have been promoted except by non-disabled advocates. People with learning difficulties were not even entitled to education in the UK until 1970, and alone had (and have) little or no access to publication outlets. What normalisation did was to supply the conditions to make speaking out possible. It was under the auspices of organisations committed to normalisation, such as the Campaign for Mentally Handicapped People in the UK, that the earliest speaking out events were organised. To the influence of normalisation can be attributed the rapid development of inclusive styles of research in the late 1980s and early 1990s. A second major influence has been emancipatory research which during the mid-1990s began to make its impact felt in some areas of learning disability research (see Walmsley, 1994, for a contemporary example).

Inclusive research in learning disability 327 Language has played a part in aligning studies of people with learning difficulties with disability studies. In this article, I refer to ‘people with learning difficulties’ because self-advocacy organisations have expressed a preference for that term. However, ‘learning disability’ is used in the UK equally widely and is the terminology used in Government documents (the National Learning Disability Strategy, for example). I would argue that the linguistic change is important. Whereas the term ‘mental handicap’ semantically aligned the problem with mental illness, the widespread adoption of the terms ‘learning’ or ‘intellectual’ disability in the 1990s made a clear statement that it belongs with disability. Linguistic changes both reflect and encourage a tendency to see learning disability as a fit subject for disability studies. The word disability was a signal to some learning disability researchers that they needed to take on board ideas about emancipatory research. It’s important, however, not to overstate the position. The embracing of learning disability in the broad field of disability studies is a fairly recent development and has to date had a limited impact. Although the semantics have changed there is inertia in academia in applying this change. The migration of learning disability from being a topic area dominated by psychiatry, psychology and education to being covered by disability studies has barely begun in academic institutions. Some leading academic departments that specialise in learning disability are still housed in the psychiatric departments of medical schools. In other universities Faculties of Education or Psychology are the home environment, whilst in yet others it is the health and social care faculty. Academics in Disability Studies have marginalised learning disability. Chappell has argued that the emphasis on embodiment excludes people whose primary impairment is in cognitive functioning (Chappell, 1997), and there are numerous examples where the inclusion of learning disability in theorising appears to be an afterthought. Of the 31 contributors to Campbell and Oliver’s Disability Politics (1996) only one identifies herself as a person with learning difficulties, for example. However, challenges from the disabled people’s movement to move towards an emancipatory mode have had a major impact on some research in learning disability, leading some researchers to make extraordinary efforts to empower people with learning difficulties. Stalker responded energetically to an implied criticism that her work questioned ‘the genuine research involvement of people with learning difficulties’ (Williams, 1999): I have made it a priority to produce research findings in formats accessible to people with learning difficulties and to have the appropriate costs included in research budgets. (Stalker, 1999, pp. 117–118) The inclusion of people with learning difficulties in research projects has led to some creative, even empowering projects. It has also, I would suggest, acted as a strait-jacket, hindering researchers in the inclusive camp from crossing words

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with others, for fear of ‘speaking for’ people with learning difficulties without their consent.

Normalisation: a biography Normalisation ideas draw on a mixture of human rights and deviancy theories. In the Scandinavian model, the emphasis is on rights: The normalisation principle means making available to all mentally retarded people patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life of society. (Nirje, 1980, p. 33) In the North American manifestation of normalisation (renamed ‘social role valorisation’ by Wolfensberger c. 1983) (Wolfensberger & Tullman, 1989), the emphasis is on social devaluation and reversing its consequences, i.e. it has more in common with deviancy theory: Normalisation implies, as much as possible, the use of culturally valued means in order to enable, establish and/or maintain valued social roles for people. (Wolfensberger & Tullman, 1989, p. 131) Thus, although each of the two main normalisation variants draws both on human rights ideas and on deviancy theory, the Scandinavian variant is derives more from human rights, the North American derives more from deviancy theory. For a number of reasons, articulated in detail elsewhere (see Whitehead, 1992; Race, 1999) normalisation ideas permeated British social policy for people with learning difficulties in the 1970s and 1980s. This can be clearly seen in the three principles of the All Wales Strategy (AWS), the most sustained attempt in the UK to develop a coherent approach to service provision for people with learning difficulties to date: • • •

People with a mental handicap have a right to ordinary patterns of life within the community. People with a mental handicap have a right to be treated as individuals. People with a mental handicap have a right to additional help from the communities in which they live and from professional services in order to enable them to develop their maximum potential as individuals. (Welsh Office (1983) quoted in Felce and Grant, 1998, p. xii)

However, it is important to note that the impetus for change which normalisation represents came from people who were not themselves labelled as having a mental handicap or learning disability. This is in contrast to civil rights move-

Inclusive research in learning disability 329 ments by black people and by disabled people (Campbell & Oliver, 1996). Thus, although the ideas which inspired both are common, the articulation and implementation of the ideas in the learning disability arena were in the hands of non disabled people. The original ideas, as articulated by Nirje and Wolfensberger, came from academia; the research on hospitals was undertaken by non disabled researchers in response to a changing climate which emphasised civil rights; the policy dictums came from government; and the area identified as needing to change was services and to a lesser extent public attitudes. Proponents of normalisation acted in a long tradition of advocacy for disadvantaged groups. The voices of the disadvantaged themselves were absent, and in key texts still are (see Race’s 1999 book Social Rights Valorisation and the English Experience). Thus the civil rights movement for people with learning difficulties took a strikingly different turn from that which it took for other groups where taking control of their own destiny was a leitmotif. Normalisation puts the responsibility for change on others, rather than placing it in the hands of people with learning difficulties. Ironically, at the same time, it requires change on the part of people with learning difficulties who need to fit in so that they can become carriers of positive social identities, an issue to be explored below. It is beyond my scope to examine in any detail the policy prescriptions which were drawn from normalisation. However, it was closely associated with deinstitutionalisation, the introduction of community care, small residential units (group homes) in ordinary houses in ordinary streets, the use of integrated rather than segregated facilities—schools, health services, leisure facilities—the move away from contract work in day centres to more leisure oriented social education centres, and ‘social integration’ (Kings Fund, 1980). One of the most significant implications of normalisation was the emphasis on association with ‘valued’ others, people without disabilities (see Ties and Connections, Kings Fund, 1988).

Normalisation and research Not only did normalisation ideas permeate policy approaches and training in the field, they also influenced research, both content and method. In view of the adoption of normalisation influenced principles in official UK policy, such as the Jay Committee Report (1979) and the AWS (1983), this was inevitable. The influence normalisation has had, and continues to have, on research agendas in the UK context can be grouped under the following headings: • • • •

Participation—as respondents and researchers; Focus on service quality and outcomes; Normalisation ideas as an evaluative yardstick; Advocacy: attitudinal Change and Positive Imagery.

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Participation as respondents and as researchers Although by no means all normalisation research is inclusive, normalisation has been influential in moving researchers towards a participatory stance. Normalisation gave a fairly straightforward and unproblematic rationale for encouraging participative research as it accorded to non-disabled allies a central role as advocates promoting change, while through the concept of social role valorisation it encouraged a search for ways in which people with learning difficulties could gain valued roles. Involvement in research in various ways came to be seen as a way of promoting ‘valued social roles’. In their 1979 book, Williams and Schoulz quote an example of preparing a group of self-advocates in the US for their roles as evaluators of a service: Dr McGee explained that when one inspected a service it was important to behave as professionally as possible. There should be no negative remarks about what was seen and no laughing or joking during the tour. Instead the evaluators should make positive or neutral comments, ask questions, inhibit smoking and gum chewing, pay attention to the staff attending the programme, behave politely to direct care staff (and so on). (Williams & Schoulz, 1979, p. 35) This is an early prototype of the sort of roles people with learning difficulties would increasingly play in research in the late twentieth century, modelled on professional evaluators, but bringing to the task a specialist insight based on personal experience of living in services. The idea that being involved in research can promote valued social roles is clearly articulated by Atkinson & Williams (1990). They argue that their edited anthology of prose, poetry and art is a form of research, and write: Being a published author or painter is a valued social role . . . We know that this social recognition is highly valued. (Atkinson & Williams, 1990, p. 236) Thus, with its emphasis on promotion of valued social roles normalisation/social role valorisation, paved the way for inclusive research.

Focus on service quality and outcomes The main site for change in normalisation philosophy is services. Service providers are assigned in normalisation writings a key role in promoting change. As services are also the way Government has conceptualised the problem and the solution, there is a neat match between what Government is interested in and normalisation ideas. This can be seen by examining the large and influential body of research undertaken into the functioning of the All Wales Strategy (Felce & Grant, 1998). Perhaps because the AWS was informed by ideas

Inclusive research in learning disability 331 associated with normalisation and its particularly English derivative ‘an ordinary life’ (Kings Fund, 1980), the researchers took as their yardstick the degree to which it delivered in areas such as: • • • •

Providing a comprehensive local service to families and to individuals with learning difficulties. The success of services in establishing individual planning for every person with a learning difficulty and implementing people’s wishes. The degree to which services promote integration with local communities, for example, access to paid employment, leisure facilities. How much progress was made in de-institutionalisation and provision of ordinary housing.

In keeping with normalisation’s original focus on services, the research undertaken under the auspices of the AWS had what services deliver what outcomes and the way services operate as a central focus. This is not to say that ‘consumers’ (families and individuals with learning difficulties) were not involved—they were—but that the emphasis in normalisation on services as the route to a better quality of life was maintained both in the policy, and in the research which evaluated its successes and failures (Felce & Grant, 1998). Framing research in this way, where an ideologically-based set of policy prescriptions is evaluated against its original aims, leaves little space for the development of alternative interpretations of failure, such as cultural or economic barriers. It is essentially an analysis in which political and legislative changes, resource shortages and the failure of systems to deliver what they say they plan to do provide the explanations. There are examples of inclusive research with a similar focus. People First London were invited to conduct an evaluation of a programme that moved people from institutions to ordinary houses as part of a hospital closure programme. Sponsored by the local Health Authority and Social Services Department in the London Borough of Hillingdon, two self-advocates drew up questionnaires, and conducted interviews (with help). The written account of this innovative approach is reflective on its successes and failures (Whitaker, 1995). It is, however, noteworthy that the thrust of the research was to evaluate and feed into service development—an example of the type of research of which both Simone Aspis (1997) and Vic Finkelstein (1999) have been critical, namely that disabled researchers are co-opted into assisting with the agenda of service providers. Normalisation ideas used as an evaluative yardstick Normalisation provides clear prescriptions for evaluating service quality. John O’Brien’s Framework for Accomplishments (O’Brien & Lyle, 1987) plays a role here, in articulating a set of principles against which evaluative judgments can be made. How far does the service facilitate physical presence, choice, contribution to the lives of others, dignity and relationship?

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The People First Hillingdon researchers made use of this framework in analysing the questionnaire results, although they found the last ‘accomplishment’ impossible to judge because: They felt that they could not make a judgment here because during the two weeks at the house there were not enough opportunities to observe people interacting with ordinary members of the public. (Whittaker, 1995, p. 101) The assumption that the quality of ‘relationship’ could only be judged by observation of interactions with ordinary people illustrates the extent to which quite crude normalisation ideas—in this case the belief that relationships with nondisabled people are a crucial determinant of quality of life—influenced this piece of inclusive research. Thus, people with learning difficulties have been included in evaluative research where they have been encouraged to use quality yardsticks developed within the normalisation framework to inform the task. Advocacy: promoting positive imagery and changing attitudes The role assigned in normalisation/social role valorisation to non-disabled people has significance for research in giving a blueprint for the researcher as an advocate. Citizen Advocacy is the clearest statement of the duty of ordinary people to work for people with learning difficulties. Butler Carr and Sullivan’s definition of a Citizen Advocate is: A person who is richly connected to the networks of people and associations that make up community life and is independent of services, is willing, on an unpaid basis, to create a relationship with a person at risk of social exclusion, and to understand and respond to and represent that person’s interests as if they were their own, thus bringing their partner’s gifts and concerns into the circles of ordinary community life. (Quoted in Williams, 1990, p. 102) Wolfensberger went so far as to argue that advocacy was a pre-requisite for selfadvocacy: A severely limited person learns self advocacy best within the demanding shelter, protection, love and friendship of a citizen advocacy relationship, because these processes are especially apt to bring the person towards growth and independence. (Quoted in Williams & Schoulz, 1979, p. 93) The normalisation philosophy gives non-disabled people a central and unassailable position.

Inclusive research in learning disability 333 In some respects, I would argue, inclusive researchers have taken on some aspects of the role of citizen advocates, endeavouring through research to bring their research partners into the circles of ordinary community life. The need for people to be assisted to fit in to facilitate social integration is explicitly acknowledged in the quotation from Williams and Schoulz’s book above. The analogy with citizen advocacy works at two levels. One level is the inclusion of people with learning difficulties with valued and active roles within the research enterprise. Sheena Rolph, for example, worked with a group of older people with learning difficulties to construct a history of community care in Norfolk (Rolph, 2000). She accorded them the title ‘life historians’, and they played a major role, both as informants and in data analysis. This accords people roles with a relatively high social status, in accordance with social role valorisation philosophy. It also works at the level of content. If I may once more cite Sheena Rolph’s work, the life historians are presented in a positive light. Their stories elicit sympathy and admiration. Had Sheena suspected that one of the life historians was a thief or a child abuser, for example, it would have been very hard for her to acknowledge her suspicions given her commitment to them as people and coresearchers deserving of respect. Booth & Booth explicitly acknowledge in their work with parents that they are influenced by the principles of citizen advocacy (Booth & Booth, 1994). It would have been unthinkable to present the parents as incompetent, given this stance. Researchers working within an inclusive paradigm are, like the Booths, almost invariably highly committed to improving the lot of people with learning difficulties. Yet whilst it is important that negative myths about people with learning difficulties are challenged through research, the result can be a somewhat uniform representation of people with admirable human qualities struggling to make the most of difficult lives. I have nothing against this, but it may be replacing one stereotype with another. So far, I have traced the influence of normalisation on inclusive research in learning disability. Primarily, I’d suggest that it has paved the way for people being involved as participants and researchers as a means of promoting valued social roles. The researcher frequently positions him/herself as an advocate, undertaking to support people in being involved and to present people with learning difficulties in a positive light. The focus of attention has been on services, how they perform and how they should perform, and normalisation has also supplied criteria by which services can be judged.

The influence of the social model We might characterise the sort of research referred to above as participatory, ranging from the AWS model of seeking the views of consumers, and synthesising them to Sheena Rolph’s work with life historians as both informants to and shapers of the research. Participatory research can be found in a number of research areas, but the term emancipatory research is almost exclusively

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associated with the Disability movement. Whilst participatory research is rooted in a long standing effort to co-opt and understand the ‘under-dog’ in a whole variety of settings, and has been taken up enthusiastically in the disability field, some disabled academics argue that emancipatory research is their own creation. Rooted in the ‘social model of disability’, which sees disability as created by social barriers, rather than individual impairment, emancipatory research is seen as a part of disabled peoples’ struggle for civil rights. In the emancipatory research paradigm, disabled people should control, rather than merely participate in, the research process. The researcher moves from being the ‘expert’ interpreter of the world to being the servant of disabled people, putting his or her skills at their disposal. Disabled people should formulate the research question and, crucially, control the funding. Emancipatory research is about the systematic demystification of the structures and processes which create disability and the establishment of a workable ‘dialogue’ between the research community and disabled people in order to facilitate the latter’s empowerment. To do this, researchers must learn how to put their knowledge and skills at the disposal of disabled people. (Barnes, 1992, p. 122) Although the disabled people’s movement claims emancipatory research as its own, it does owe a great deal to the ideas of Freire (1964, 1969/70) and others, particularly South American writers who pioneered it in the 1960s and 1970s. The distinctive contribution of disability studies was to distinguish participatory from emancipatory research by emphasising its role as ‘part of the process of changing society to ensure [disabled people’s] full participation and citizenship’ (French & Swain, 1997, p. 28). In this respect, emancipatory research is as much a form of political action as it is research. Finkelstein, in a challenging essay, argues that emancipatory research must concern itself not only with methodologies that put disabled people in control, it must also address fit subjects: We also have to give equal emphasis to what are legitimate targets for emancipatory research . . . For me, then, research guided by the social model of disability (in this context emancipatory research) must of necessity explore and identify appropriate avenues for change in addition to giving consideration to the processes involved in carrying out the investigation. (Finkelstein, 1999, p. 859 and p. 862) According to Finkelstein, research (like that undertaken by Priestley, 1999) is not emancipatory if it follows the agenda set by others, most notably the Government or professionals (including, in some cases, disabled professionals and academics).

Inclusive research in learning disability 335 The emancipatory mode presents research as advocacy, and abandons the claim of research to objectivity. In this respect, normalisation researchers are less frank, though the outcome is often similar. The dividing line between participatory and emancipatory research may seem blurred at times. Zarb clearly states that there is a difference: participatory research may be a prerequisite to emancipatory research in the sense that researchers can learn from disabled people and vice versa. (Zarb, 1992, p. 128) However, that simply increasing participation and involvement: will never by itself constitute emancipatory research unless and until it is disabled people themselves who are controlling the research and deciding who should be involved and how. (Zarb, 1992, p. 128) Table 20.1 summarises the differences according to Zarb and others on six major dimensions.

Table 20.1 Participatory research and emancipatory research

Methodology

Ideology

Who is in control?

Role of researcher

Subject matter Accountability

Participatory research

Emancipatory research

Phenomenological (getting inside the experiences of research subjects), qualitative methods Not prescribed; likely to be either normalisation or social model of disability, and to promote positive images of disabled people Researcher in partnership with disabled people, particularly at data collection stage Expert, sharing expertise with research subjects; sometimes also an advisor /supporter Issues relevant to the lives of disabled people

Research as political action; either qualitative or quantitative methods

Accountable to funders

Adoption of social model of disability; research only undertaken if it will practically benefit disabled people Disabled people in control of all aspects from formulation of questions to dissemination Expertise at disposal of disabled people, accountable to disabled people Explores and identifies appropriate avenues for change Accountable to disabled people and their organisations

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To date, as Chappell et al. (in press) point out, efforts have been made to apply an emancipatory model to method, but not to content in the learning disability context. Thus, a number of researchers like March et al., (1997), Val Williams (1999) and Kirsten Stalken (1998) have explicitly attempted to put people with learning difficulties in the driving seat in methodological terms, putting their skills at the disposal of their colleagues, but few if any have met Finkelstein’s challenge of exploring and identifying appropriate avenues for change. Riddell et al. put the issues thus: Attempting to fulfil all three criteria (of emancipatory research) in action research with physically disabled people is imaginable . . . Attempting to fulfil these criteria with . . . people with learning difficulties is more complex. The expertise of the researcher . . . is not transmissible to some people with cognitive impairments; the involvement of people . . . may similarly be limited; current models . . . suggest that the pulls either to the trivial or to the professionally stage managed are hard to resist! (Riddell et al., 1998, pp. 81–82) I attempt here to develop Riddell et al.’s arguments by highlighting how little dialogue has actually taken place between mainstream social model adherents and people struggling to implement emancipatory research with people with learning difficulties. My argument is that although some learning disability researchers have been influenced by the disability movement’s arguments, there has been very little debate within disability studies on the practicalities and possibilities of applying emancipatory principles to research involving people with learning difficulties. There are also a number of topics debated in the literature on emancipatory research which have yet to surface in learning disability. Once more, I highlight certain areas: • • • •

Who should undertake research. The place of the personal. Research as advocacy. Accessibility.

Who should undertake research? I have argued that in normalisation terms the non disabled researcher has a legitimate role as ally or advocate. In the emancipatory model the role of nondisabled allies is less comfortable. In reviewing a book entitled Disability: controversial debates and psychosocial perspectives (Marks, 1999), which criticises some aspects of the social model Lorraine Gradwell, a disabled activist puts the position in uncompromising terms: The need to look again at the social model of disability has been raised within the disabled people’s movement and this is where the debate must

Inclusive research in learning disability 337 develop. Non disabled allies must recognise their own role in disabling us, and find the means to address that role. And then let us know in language we can understand. (Gradwell, 1999, in Community Care 28/10 to 3/11 p. 36) This does not necessarily mean that disabled people carry out all aspects of the research—Priestley, whose Disability Politics and Community Care is, at least methodologically, a model of emancipatory research, is not disabled. However, the ideal is that disabled people are in control—of the funding, the methodology, the questions, the analysis, the dissemination. The implications of the emancipatory model are that the conditions of research production are changed so that theory and action emerge together, and out of one another. Moving towards this in research with people with learning difficulties has been a goal for some researchers. Val Williams describes the Bristol self-advocacy group’s work as a move to reciprocity, and describes how the group worked out its own agenda, undertook the interviews, and shared in the generation of theory and analysis. Her title ‘Researching Together’ (Williams, 1999) indicates that it is a team approach, rather than one where the people with learning disabilities are in charge. Rodgers (1999) sets her own work in the early 1990s in the framework of emancipatory research. She critiques her own approach and finds it lacking on several emancipatory dimensions, though she does claim some influence from disabled participants at key stages. I can illustrate the difficulties of theory and action emerging from working alongside people with learning difficulties from personal experience. I and some colleagues set out explicitly to work with women with learning difficulties on a book where we jointly edited, rather than comment on people’s ‘stories’ as academics. In this we were successful. However, when it came to questions of analysing and commenting upon the book as a whole there was a difference of opinion between the disabled women and some of the non disabled academics. The latter wanted to use the opportunity to forge connections between the work of the book’s contributors and feminist or disability theory (Atkinson et al., 2000). The disabled women wanted the stories to speak for themselves. Although there was some kind of compromise, overall the disabled women’s viewpoint prevailed. This example points to a central issue for inclusive researchers. Most people with learning difficulties need allies to do research. It is hard to find in the learning literature examples analogous to the work of Oliver, Shakespeare, Finkelstein and others where disabled people develop theoretical arguments of their own.1 It is important to acknowledge the consequences for researchers of being thus positioned. Should they, like citizen advocates, ‘understand and respond to and represent their partner’s gifts as if they were their own’ (Butler Carr & Sullivan, quoted in Williams, 1990, p. 102), or do they have the right to a voice which differs from that of their disabled colleagues? Equally, there’s been little debate about which people with learning

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difficulties are to control the research, a difficulty highlighted by Jackie Downer, a Black self-advocate (Walmsley & Downer, 1997). Downer makes the case for challenging the hegemony of white and relatively able men in the self-advocacy movement, arguing forcefully that ways need to be found to include people with more severe and profound impairments. Although the diversity of people with learning difficulties has been celebrated, there’s been little examination of power relationships within the movement. Who should undertake research is a question which needs a more complex answer than ‘disabled people’. Disabled people, like others, vary in the degree of power they may wield, and most people with learning difficulties are particularly disadvantaged, even in comparison with other disabled people. Subject matter and approach The social model has had relatively little impact at the level of subject matter. Finkelstein (1999) argues that emancipatory research must have as its focus exploring and identifying clear avenues for change—political change which will further the interests of disabled people. Most research in learning disability has as its focus what Goodley & Chappell have characterised as ‘experiential issues’ (what the world is like for people with learning difficulties) and service issues (how we can create better services to improve people’s lives)’ (Chappell et al., in press). The approach has been largely qualitative—uncovering people’s distinctive experiences and exposing them to a wider public. It is in this area that the least progress (if that’s the right word) has been made in moving to an emancipatory model. I’ll illustrate this by reference to a key area of debate in disability studies, over the role of personal narrative. In published learning disability research, the personal narrative, whether in the form of biography or a commentary upon matters of daily life is probably the commonest form of inclusive research. Its desirability is not a subject of debate. However, within disability circles the desirability of a focus on the individual narrative is keenly debated. Vic Finkelstein puts the case trenchantly: Writers like Jenny Morris have elevated the importance of personal psychological experience in understanding disability. Such work encouraged a shift away from thinking about the real world. Finding insight in the experiences of discrimination is just a return to the old case file approach to oppression, dressed up in social model jargon. (Finkelstein, 1996, p. 11) To be fair, this position is not unchallenged in the disability movement. However, my point is that few debates over the pros and cons of research which focuses on personal subjective experience and difference can be found in the literature on learning disability. Yet most inclusive research with people with learning difficulties is narrative research, research which uncovers people’s

Inclusive research in learning disability 339 distinctive experience and gives them space in publications (Booth & Booth, 1994, 1998; Rolph, 2000; Atkinson & Williams, 1990; Browning et al., 1997). To question the role of narrative research for people with learning difficulties would be to question the entire inclusive research enterprise as it currently exists. A dismissal of narrative style research, based on biography, life history, oral history or accounts of personal experiences of services in effect excludes much inclusive learning disability research. It would be refreshing to see this debated in the disability studies literature. Research as advocacy It is common to both normalisation and the emancipatory paradigm that research should promote the interests of disabled people. I would argue, however, that the disability movement is more honest about this. Barnes entitled an article in Disability and Society ‘Disability and the Myth of the Independent Researcher’ (1996) and argued within it that: If disability research is about researching oppression, and I would argue that it is, then researchers should not be professing ‘mythical independence’ to disabled people, but joining them in their struggles to confront and overcome the oppression. Researchers should be espousing commitment not value freedom, engagement not objectivity, and solidarity not independence. There is no independent haven or middle ground when researching oppression: academics and researchers can only be with the oppressors or with the oppressed. (Barnes, 1996, p. 110) It would be fair to report that this polemic did not go unchallenged. Both Bury (1996) and Shakespeare (1996) published direct responses which cite a preference for commitment over solidarity, and make a modest case for continued debate and even for the publication of information that might be uncomfortable for particular interest groups. However, the assumption that research should promote the interests of disabled people does permeate the literature. The position in learning disability is only subtly different, as I have pointed out in the discussion of normalisation. Non-disabled academics assume the right to appoint themselves as advocates. Booth & Booth, for example, state our obligation to the parents (with learning difficulties) always came before the interests of the research whenever the two appeared to move in different directions. (1994, p. 24) They acknowledge their debt both to principles of self-advocacy and to the Citizen Advocacy movement in adopting this principle.

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However, the key issue here is power. Whilst disabled people can and do conduct their debates without reference to members of the oppressing groups, people with learning difficulties still rely on a team approach, and few have been able to argue that without this team approach, people with learning difficulties would be in a position to research and publish. Whether or not non-disabled allies are drawn in there are clear dangers in placing ideology at the centre of the research project. The dangers are perhaps greater for people with learning difficulties. Chappell argues in an unpublished paper that ideologically driven research in learning disability is due to the influence of normalisation rather than to ideas developed by people with learning difficulties or the disabled people’s movement. As she puts it, in the context of ideologically driven research ‘the role of research is to evaluate what is against the ideal of what should be’. However, what should be is frequently dictated by proponents of normalisation. An example of this was quoted in the discussion of normalisation, namely, the celebrated evaluation undertaken by People First Hillingdon, using the Five Accomplishments as the framework by which services should be judged. The fact that people with learning difficulties usually need allies or supporters to enable them to undertake research means that they are extremely vulnerable to having their interests misrepresented by others. Research as advocacy in such a situation puts a heavy onus on non disabled people to act in a disinterested fashion, as they are usually the people who write the words. I would suggest that given the continuing power imbalance between people with learning difficulties and their allies, the position of research as advocacy is less straightforward than debates in the disability studies literature would suggest. Accessibility If research is to serve the interests of oppressed groups then it needs to be made accessible. However, there are debates in the disability literature about this, which are not reflected in learning disability. Making research accessible is in theory essential in emancipatory research. If it is not, then the entire enterprise is spurious. Zarb implicitly makes the case for research findings to be made accessible in his 1992 paper when he advocates research being presented to disabled people for critical scrutiny. Barnes is critical of ‘the university system’, which values articles published in ‘academic’ journals, largely for other academics, over publishing in publications that disabled people might read (1996). However, there are both explicit and implicit acknowledgements that to further the theorising of the discipline of disability studies some compromises need to be made. Shakespeare argues: Academic work on disability may not always be accessible. I believe writers should use plain language, but this does not equal a duty to be immediately comprehensible. Theories and concepts and social reality itself will often be complex, nuanced and difficult. If Disability Studies is to capture this rich-

Inclusive research in learning disability 341 ness, it will have to be able to use ideas and develop analyses which may not be transparent and simple. He quotes Einstein: Make everything as simple as possible, but not simpler. (Shakespeare, 1996, p. 118) The implicit recognition that accessibility is not the only criterion for disability studies scholars is within the pages of the leading journal, Disability and Society, itself which contains articles requiring at the very least a mastery of current sociological language. In learning disability this debate is not aired. As far as inclusive research in learning disability goes, accessibility is central. Involving people with learning difficulties in research means ensuring that, at the very least, the questions to be asked are readily grasped. It is becoming standard practice to supply accessible versions of inclusive research. Various devices have been used—plain language, bullet points, symbols, photographs, illustrations and audio/video. The Norah Fry Research centre and Joseph Rowntree Foundation have developed the Plain Facts approach to reporting research. This comprises a four page leaflet accompanied by an audio tape. In arguing for this approach the goal of emancipation is explicitly cited: The field of disability research is currently making efforts to move towards a more emancipatory approach where the involvement of disabled researchers and consultants is accepted as central to the success of a research project. In the field of learning difficulties, the participation of people with learning difficulties in research can only be achieved if information about research is made accessible to everyone. In addition, if the findings of research are to have any direct impact on the lives of those they concern, there is a moral obligation for researchers to make their publications easier to understand. (Townsley, 1998, p. 78) Townsley cites evidence that Plain Facts is read (almost invariably with the help of a non-disabled supporter) and that it prompts change in people’s lives: We didn’t know that you could have a helper at work or that you could lose benefits if you started work. (Townsley, 1998, p. 82)

One of the group members has made enquiries about moving out of his parent’s home into a home of his own. (Townsley, 1998, p. 83)

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Plain Facts is clearly a successful initiative. Townsley’s chapter, however, cites Plain Facts issues that relate very obviously to practical matters—work, education, making complaints. Whether the Plain Facts approach is amenable to translating ideas, rather than information, is not something that is explored. It is hard to see how some recent theorising in disability studies, for example, whether narrative research has a legitimate place (Sheldon, 1999) or the application of normalisation ideas to women (Williams & Nind, 1999), is readily conveyed through a Plain Facts approach. It is, as yet, unclear whether Plain Facts and similar initiatives can make all types of research accessible. There is, thus, a debate in disability studies about accessibility, a debate that has yet to be aired in learning disability research. There are some who strive for accessibility. There are many others who do not, but do not see it necessary to justify that position (see, for example, Rapley et al., 1998; Cambridge & Mellan 2000). My fear is that inclusive researchers are so fearful of saying things which people with learning difficulties cannot follow that they say very little, leaving the field of theorising to others, including disabled scholars, with little or no commitment to inclusion.

Conclusions In this article, I have described how two theoretical positions, normalisation and the social model of disability, have influenced inclusive research in learning disability. My argument has been that inclusive research in learning disability continues to be influenced by normalisation thinking, especially the importance of promoting valued social roles and positive images. The convenient rationale of advocacy allows researchers to occupy their often powerful roles with a clear conscience. To some extent and, in particular, in the area of methodology, learning disability researchers have responded to the challenge of the emancipatory paradigm. However, the adoption of ideas from emancipatory research has been partial. Within the social model of disability literature there is considerable debate on what are proper subjects for social model research, the desirability and practicality of dwelling on difference or celebrating solidarity, and how far you can make research accessible. These questions are not aired in learning disability circles. There are equally questions raised by inclusive research in learning disability which are barely acknowledged in the disability studies literature—for example, the consequences for non-disabled researchers of acting as allies; which disabled people can and should undertake research; how theory can be shared with or generated by people with mental impairments; and the possible dangers of research as political action. At present, there is a reluctance to grapple with some of these key issues. This has results which limit the impact and effectiveness of inclusive research in learning disability. One result is that inclusive research in learning disability has been confined to certain topics which are amenable to qualitative methods

Inclusive research in learning disability 343 and whose results can be made accessible. The need to make research accessible means that theorising is avoided, unless it is at a level that can be readily grasped by people with learning difficulties. Furthermore, inclusive learning disability research is developing in isolation from other research in learning disability with few connections, communications or links. It is as if some researchers are being left with the responsibility to work in inclusive ways, leaving others to carry on regardless. To date there has been a one-way traffic from disability studies to learning disability, with little evidence that issues raised in learning disability research are taken on board by other disabled scholars. Finally, it is important to acknowledge that, in writing this paper, I am putting myself in the role I have critiqued so extensively, that of academic advocate. I have written it because I believe these are important issues that we should not deny. Unless or until research can be changed in ways which make it possible for people with learning difficulties to engage as equal partners, it may be that the role of advocate is a necessary one.

Note 1 An exception to this rule is the work of Simone Aspis who, working alone and without allies, has pushed forward the debate on self advocacy, and the role of the education system in perpetuating social divisions under the name of ‘special needs’ (Aspis, 1997).

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Cambridge, P. & Mellan, B. (2000) Reconstructing the sexuality of men with learning disabilities: empirical evidence and theoretical interpretations of need, Disability and Society, 15, pp. 293–312. Campbell, J. & Oliver, M. (1996) Disability Politics: understanding our past: changing our future (London, Routledge). Chappell, A. (1997) From normalisation to where? in L. Barton (Ed.) Disability Studies: past, present and future (Leeds, Disability Press). Chappell, A., Goodley, D. & Lawthorn, R. (in press) Connecting with the social model: the relevance of the social model of disability for people with learning difficulties, British Journal of Learning Disabilities Felce, D. & Grant, G. (Eds) (1998) Towards a Full Life: researching policy innovations for people with learning disabilities (London, Butterworth Heinemann). Finkelstein, V. (1996) Outside ‘Inside Out’, Coalition, April, pp. 30–36. Finkelstein, V. (1999) Doing disability research (extended book review), Disability and Society, 14, pp. 859–867. Freire, P. (1964) La Education como practice de libertad (Education as the practice of Freedom) (Mexico City, Siglo XX1). Freire, P. (1969/70) Pedagogia del oprimido (Pedagogy of the Oppressed) (Montevideo, Tierra Nueva). French, S. & Swain, J. (1997) Changing Disability Research: Participating and Emancipatory Research with Disabled People, Physiotherapy, 83(1), pp. 26–32. Gluck, S.B. & Patai, D. (1991) Women’s Words: The Feminist Practice of Oral History (London, Routledge). Gradwell, L. (1999) Review of Disability: Controversial Debates and Psychosocial Perspectives by Deborah Marks Community Care, 28/10 to 3/11, p. 36. Kings Fund (1980) An Ordinary Life (London, Kings Fund). Kings Fund (1988) Ties and Connections (London, Kings Fund). March, J., Steingold, B., Justice, S. & Mitchell, P. (1997) Follow the Yellow Brick Road: people with learning difficulties as co-researchers, British Journal of Learning Disabilities, 25, pp. 77–80. Marks, D. (1999) Disability: controversial debates and psycho-social perspectives (London, Routledge). Nirje, B. (1980) The normalisation principle, in R.J. Flynn & K.E. Nitsch (Eds) Normalisation, Integration and Community Services (Baltimore, University Park Press). O’Brien, J. & Lyle, C. (1987) Framework for Accomplishments: a workshop for people developing better services (Decatur, Responsive Systems Associates). Oliver, M. (1990) The Politics of Disability (London, MacMillan). Priestley, M. (1999) Disability Politics and Community Care (London, Jessica Kingsley). Race, D. (1999) Social Role Valorisation and the English Experience (London, Whiting and Birch). Rapley, M., Kiernan, P. & Antaki, C. (1998) Invisible to themselves or negotiating identity? The interactional management of being ‘intellectually disabled’, Disability and Society, 13, pp. 807–827. Riddell, S., Wilkinson, H. & Baron, S. (1998) From emancipatory research to focus groups: people with learning difficulties and the research process, in P. Clough & L. Barton (Eds) Articulating with Difficulty: research voices in inclusive education (London, Paul Chapman Publishing). Rodgers, J. (1999) Trying to get it right: undertaking research involving people with learning difficulties, Disability and Society, 14, pp. 421–434.

Inclusive research in learning disability 345 Rolph, S. (2000) The History of Community Care for People with Learning Difficulties in Norfolk: the role of two hostels, Unpublished PhD thesis (Milton Keynes, Open University). Shakespeare, T. (1996) Rules of engagement: doing disability research, Disability and Society, 11, pp. 115–120. Sheldon, A. (1999) Personal and perplexing: feminist disability politics evaluated, Disability and Society, 14 pp. 643–658. Stalker, K. (1998) Some ethical and methodological issues in research with people with learning difficulties Disability and Society, 13, pp. 5–20. Stalker, K. (1999) Letter, British Journal of Learning Disabilities, 27, pp. 117–118. Townsley, R. (1998) Information is power: the impact of accessible information on people with learning difficulties, in L. Ward (Ed.) Innovations in Advocacy and Empowerment for People with Intellectual Disabilities (Chorley, Lisieux Hall). Walmsley, J. (1994) ‘Learning disability: overcoming the barriers, in S. French (Ed.) On Equal Terms: working with disabled people (London, Butterworth Heinemann). Walmsley, J. & Downer, J. (1997) Shouting the loudest: self advocacy, power and diversity, in P. Ramcharan, G. Roberts, G. Grant & J. Borland (Eds) Empowerment in Everyday Life: learning disability (London, Jessica Kingsley). Whitehead S. (1992) The social origins of normalisation, in H. Brown & H. Smith (Eds) Normalisation: a reader for the nineties (London, Routledge). Whittaker, A. (1995) Partnership in practice: user participation in services for people with learning difficulties, in T. Philpot & L. Ward (Eds) Values and Visions: changing ideas in services for people with learning difficulties (London, Butterworth Heinemann). Williams, L. & Nind, M. (1999) Insiders or outsiders: normalisation and women with learning difficulties, Disability and Society, 14, pp. 659–672. Williams, P. (1990) Networks, Workbook 2 of Learning Disability: changing perspectives (Buckingham, Open University). Williams, P. & Schoulz, B. (1979) We Can Speak for Ourselves (London, Souvenir Press). Williams, V. (1999) Researching together, British Journal of Learning Disabilities, 27, pp. 48–51. Wolfensberger, W. & Tullman, S. (1989) A brief outline of the principle of normalisation, in A. Brechin & J. Walmsley (Eds) Making Connections: reflecting on the lives and experiences of people with learning difficulties (Sevenoaks, Hodder and Stoughton). Zarb, G. (1992) On the road to Damascus: first steps towards changing the social relations of research production, Disability, Handicap and Society, 7, pp. 125–138.

21 What a difference a decade makes Reflections on doing ‘emancipatory’ disability research Colin Barnes Centre for Disability Studies, Department of Sociology and Social Policy, University of Leeds Abstract This paper provides a broad-based overview of the development of emancipatory disability research in the UK since its emergence in 1992. Drawing on personal experience in the field, the author responds to several important considerations that need to be addressed before considering adopting this controversial perspective. The paper is divided into two main sections. The first part provides a concise introduction to the thinking that underpins the concept of emancipatory disability research. The second section discusses key elements of this approach including the problem of accountability, the social model of disability, choice of methods and, empowerment, dissemination and outcomes. The paper concludes by suggesting that whilst there has been considerable progress over the last decade the future of emancipatory disability research remains precarious.

Introduction It is now more than a decade since Mike Oliver used the term ‘emancipatory’ disability research to refer to what for many seemed like a radical new approach to researching disability issues (Oliver, 1992). Hitherto, of course, a great deal has been written about this ‘new’ perspective; some of it positive, some of it less so (see for example, Clough & Barton, 1995, 1998; Stone & Priestley, 1996; Barnes & Mercer, 1997; Oliver, 1997, 1999; Moore et al., 1998; Truman et al., 2000). Whilst most of this literature is on the whole supportive of the principles underpinning the emancipatory research paradigm, it raises several important considerations that need to be addressed when thinking about disability research. And, as a consequence, casts serious doubt as to its desirability, practicality or indeed, effectiveness. As an advocate of the principles of ‘emancipatory’ disability research with several years’ experience in the field, this paper represents a personal reflection on some of the key issues that have arisen from these discussions without addressing directly the work of particular individuals. The emphasis therefore is mainly on the British experience although I would hope that the issues raised have some relevance to people working on disability research in other countries. The paper is divided into two main sections; the first provides a brief

What a difference a decade makes 347 introduction to the notion of emancipatory disability research. The second part focuses on selected key characteristics associated with this perspective. I will argue that the emancipatory research model has made an important contribution to the disability research agenda, and that in certain respects it is no longer that far removed from other more mainstream research strategies.

Disability or not disability research? It is important to recognise at the outset that social researchers and sociologists in particular have, in various ways, been researching ‘disability’ related issues for much of the last century. The idea of medicine as a mechanism of social control and its implications for doctor–patient interactions, for example, is rooted in the work of the American sociologist Talcott Parsons (1951). Following Parsons a veritable farrago of studies have appeared from a variety of social science perspectives chronicling almost every aspect of disabled people’s lives. Important early examples include research on the imposition and meaning of stigma (Goffman, 1968; Scambler & Hopkins, 1986; Murphy, 1987), institutional living (Goffman, 1961; Miller & Gwynne, 1972; Alaszewski, 1986), the role of professionals (Ilich et al., 1977) and disability and poverty (Townsend, 1979). Furthermore, these have been accompanied by large-scale epidemiological surveys documenting the prevalence of ‘disability’ within the general population (Harris, 1971; Martin et al., 1988). Each of these studies has made important contributions to contemporary knowledge of disability and related fields. Nevertheless, all of these projects and the numerous others that were, and in many cases are still being produced are in one way or another rooted in conventional wisdom; namely, that accredited impairment, whether physical, sensory or intellectual, is the primary cause of ‘disability’ and therefore the difficulties: economic, political and cultural, encountered by people labelled ‘disabled’. Notwithstanding, that some social scientists, particularly those influenced by interactionist and labelling perspectives, such as Thomas Szasz (1961), Thomas Scheff (1966) and Robert Edgerton (1967) had begun to seriously question orthodox explanations for societal responses to ‘mental illness’ or ‘mental retardation-handicap’ in the 1960s. However, these insights were not extended to other sections of the disabled population and in particular, people with physical or sensory conditions. Of course this began to change in the late 1960s and early 1970s with the politicisation of disability by disabled activists throughout the world (Campbell & Oliver, 1996; Charlton, 1998; Driedger, 1989). Of particular importance is the redefinition of ‘disability’ by Britain’s Union of the Physically Impaired Against Segregation (UPIAS) (1976) and the development of the social model of disability. With a small but influential membership of disabled activists UPIAS made the crucial distinction between the biological and the social. Thus ‘impairment’ denotes a medically defined condition but ‘disability is something imposed on top of our impairments by the way we are unnecessarily

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isolated and excluded from participation in society’ (UPIAS, 1976, p. 14). This socio-political interpretation of disability provided the conceptual clarity and language that are the foundations upon which the social model of disability, the theorisation of disability as social oppression, and the emancipatory disability research paradigm rests. Employing the insights and terminology of the UPIAS, Mike Oliver (1983, p. 23) coined the phrase the ‘social model of disability’ to refer to ‘nothing more or less fundamental’ than a shift away from an emphasis on individual impairments towards the ways in which physical, cultural and social environments exclude or disadvantage people labelled disabled. Several theories explaining the oppression of disabled people followed (see, for example, Priestley, 1998) and an alternative approach to doing disability research generally referred to as ‘emancipatory disability research’ (DHS, 1992). However, it is important to remember at this point that disabled activists have criticised mainstream disability research since at least the 1970s (Hunt, 1981; Oliver, 1987). Moreover, in the following decade several studies began to appear, mostly produced by disabled researchers, which drew on the experiences of disabled participants to illustrate the extent of the oppression encountered by disabled people and their families in the UK. Examples include ‘Walking into Darkness’ (Oliver et al., 1988), ‘Able Lives’ (Morris, 1989) and ‘Cabbage Syndrome’ (Barnes, 1990). Significantly, as we shall see later, in 1989 the British Council of Disabled People (BCODP), Britain’s national umbrella for organisations controlled and run by disabled people, commissioned a large-scale study of the discrimination encountered by Britain’s disabled population in support of their campaign for anti-discrimination legislation (Barnes, 1994). This was paralleled by a growing disillusionment with conventional social research strategies by researchers working in the ‘developing’ nations of the majority world, black writers, feminists and educationalists. Out of which emerged a growing literature on ‘critical social research’ and/or ‘action research’ that positively allied itself with oppressed groups (see for example Truman et al., 2000). All of which contributed to the thinking behind the emergence of the emancipatory disability research paradigm. A series of seminars entitled ‘Researching Physical Disability’ in 1991 funded by the Joseph Rowntree Foundation (JRF) provided a forum for the further development of this new approach. These events brought together disabled and non-disabled researchers working in the disability field along with representatives of various research funding agencies and institutes to reflect on and discuss key issues for disability research. This initiative culminated with a national conference and a special issue of the international journal Disability, Handicap and Society (renamed Disability & Society in 1993) on researching disability (DHS, 1992) which ushered in the concept of emancipatory disability research. Since its inception, however, this approach has stimulated considerable debate within the disability research community both in Britain and the rest of the world (see for example Rioux & Bach, 1994; Stone & Priestley, 1996; Barnes & Mercer, 1997; Albrecht et al., 2001; Brown, 2001; Mercer, 2002).

What a difference a decade makes 349 In essence, emancipatory disability research is about the empowerment of disabled people through the transformation of the material and social relations of research production. In contrast to traditional investigative approaches, the emancipatory disability research agenda warrants the generation and production of meaningful and accessible knowledge about the various structures—economic, political, cultural and environmental—that created and sustain the multiple deprivations encountered by the overwhelming majority of disabled people and their families. The integrating theme running through social model thinking and emancipatory disability research is its transformative aim: namely, barrier removal and the promotion of disabled people’s individual and collective empowerment. From this perspective the role of the researcher is to help facilitate these goals through the research process. Not too long ago such ideas seemed utopian to say the least. Then, the bulk of disability research was financed by large Government-sponsored agencies such as the Department of Health (DoH), the Medical Research Council (MRC) and the Economic and Social Research Council (ESRC). In many ways these bodies were dominated by traditional medical and academic concerns and conventional assumptions about disability and disability related research. Today, the situation is a little different. Although the growing critique of disability research coming from the disabled people’s movement was undoubtedly a contributory factor, this transformation is almost certainly also due to other factors. Probably the most significant is the growing emphasis of market forces within universities and other research institutions (Barnes, 1996). Other important considerations include the increased use or misuse of research data, both quantitative and qualitative, by politicians, policy makers and the media, and the consequential and indeed quite understandable widespread disillusionment with anything that passes for social research amongst the general public (Barnes et al., 2002). Furthermore, it is evident that as we delve deeper into the twenty first century, a large number, if not the majority, of recent and current research projects focusing exclusively on disability and related issues in the UK are funded by charitable agencies and trusts such as the JRF and National Lottery’s Community Fund. Both these organisations prioritise user-led initiatives and concerns over those of the academy and professional researchers (www.jrf.org.uk, www.community-fund.org.uk/research). Additionally, over the last decade or so there have been several pieces of research produced which I believe, implicitly if not explicitly, do adhere, on several levels to an emancipatory research model. Notable early examples include the BCODP research on institutional discrimination against disabled people, cited above, Oliver and Zarb’s (1992) analysis of personal assistance schemes in Greenwich and subsequent BCODP research projects on direct payments (Barnes, 1993; Zarb & Nadash, 1994), but more on this later. Equally important, although the rhetoric has yet to be matched with meaningful outcomes, there is a growing emphasis on user participation, if not control, within the research programmes of the various research councils, the

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National Health Service (NHS), with the Consumers in NHS Research Support Unit, and the newly formed Social Care Institute for Excellence (SCIE) (see for example: www.esrc.ac.uk, www.conres.co.uk, www.scie.org.uk). Whilst these developments might not go as far as some would wish, and certainly their impact has yet to be fully evaluated, they do mark significant moves in the right direction. However, since its emergence in 1992 several attempts have been made to identify the key characteristics of the emancipatory disability research model (Barnes & Mercer, 1997; Stone & Priestley, 1996; Mercer, 2002). For the purposes of this paper these can be summarised as follows—the problem of accountability, the role of the social model of disability, the choice of methods, and empowerment, dissemination and outcomes.

Some key characteristics of an emancipatory research model The problem of accountability Accountability is a major consideration for all those striving to do emancipatory disability research. Yet this raises a number of important concerns for social researchers that are not easily resolved (see for example Barnes, 1996; Bury, 1996; Shakespeare, 1996a). Probably the most controversial relates to the contention that researchers must be accountable to disabled people and their organisations. Howver, to be accountable to the entire disabled population would be impossible. The issue is particularly problematic because the label ‘disabled’ can be applied to almost anyone with ascribed impairment or impairments whether physical, sensory or intellectual. Hence, the potential disabled population is vast. It is also the case that for a variety of reasons, structural and interpersonal, many people with ascribed impairments do not consider themselves ‘disabled’ or members of an oppressed group (Shakespeare, 1996b). But the same can be said of members of other oppressed sections of society such as the working class, women, black people, and lesbians and gay men. John Swain’s (1995) account of research in a segregated college offering vocational education for 14–18 year olds with designated ‘special educational needs’ illustrates the point well. Although most students were from ‘working class families and many were from backgrounds of extreme poverty and deprivation’ and therefore could be said to experience considerable oppression of different forms, Few would have been identified by themselves or others, as disabled people and few would identify themselves as having ‘special educational needs’. Nor did they have a political agenda that they wished to articulate. (Swain, 1995, pp. 76–77) Hitherto, researchers making themselves accountable to organisations controlled and run by disabled people have gone some way in resolving this problem. In my view the standard for accountability was set with the BCODP

What a difference a decade makes 351 anti-discrimination project mentioned earlier. After securing funding from JRF and Charity Projects research began in January 1990. The project was coordinated throughout by a research advisory group of five people only one of whom was a non-disabled person. The group met on a bi-monthly basis to comment on and review progress. Moreover, besides collecting relevant data the first five months of 1990 were spent discussing the aims and objectives of the research with key figures representing Britain’s disabled people’s movement. Data analysis and drafts of chapters were periodically produced and circulated to the advisory group and representatives of disabled people’s organisations along with requests for comments and recommendations. These were subsequently discussed at advisory group meetings before amendments were made (Barnes, 1994, pp. xi–xix). When the final report was completed a protracted process of dissemination was undertaken: discussed below. Similar levels of accountability have been achieved by other BCODP research projects including the work on direct payments (Zarb & Nadash, 1994) and the more recent study of independent living services controlled and run by disabled people (Barnes et al., 2000). However, whereas a decade ago the distinction between traditional organisations for disabled people run by mainly non-disabled professionals and the more radical organisations of disabled people themselves like the BCODP was quite evident, today it is less clear cut. Due mainly to the successful politicisation of disability by the latter, many of the former have since adopted the language of rights and amended their constitutions to ensure that their controlling bodies include more disabled than non-disabled people. Whether this development is viewed positively or not is now a highly contentious issue for some disabled activists since it raises serious concerns about the clarity of organisational goals, claims to representativeness and the potential neutralisation of disability politics (Barnes & Mercer, 2001; Thomas, 2002). The problem can only be resolved by researchers having more than a passing involvement with disability organisations. Through a protracted process of engagement they can then become familiar with organisational structures, their goals, the membership of their controlling body, and their procedures for accountability to members. However, such a strategy may pose particular problems for non-disabled researchers, mainly because for some people within the disabled people’s movement social research, and particularly that conducted by non-disabled researchers, is still viewed with suspicion. But having a designated impairment does not automatically give someone an affinity with people with similar conditions or disabled people generally nor, indeed, an inclination to do disability research. Emancipatory disability research is not about biology it is about commitment and researchers putting their knowledge and skills at the disposal of disabled people and their organisations; they do not necessarily have to have an impairment to do this (Barnes, 1992). Neither Gerry Zarb nor Pamela Nadash identified as disabled people when they were conducting research for the BCODP. Notwithstanding, protracted engagement with disabled people’s organisations raises problems for all professional researchers working within a market led

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environment where continued employment and future career prospects are all too often determined by an ability to secure lucrative and long term research contracts. Most of the organisations run and controlled by disabled people are local, hand-to-mouth operations with very limited resources (Morgan et al., 2001). In such organisations funding for research is usually accorded a relatively low priority and when it is needed, the demand is usually for small-scale locally based projects that are relatively short term in character. The situation is equally difficult for those working within university settings. Besides the vagaries of the market, they are subject to the demands of a traditionally conservative academic community whose interests are often at odds with those of disabled people and their organisations. All of which makes meaningful ongoing relations between researchers and disabled people’s organisations difficult to maintain (Barnes et al., 2002). The social model of disability The social model of disability is a core component of the emancipatory research paradigm. A decade ago adopting an overtly social model perspective represented something of a radical departure from conventional wisdom in discussions of disability and dependency. But this is no longer the case. Indeed, in some respects the social model has become the new orthodoxy. Many of the traditional organisations for disabled people now claim allegiance to a social model outlook (Thomas, 2002). Social model thinking underpins the work of the British Government initiated Disability Rights Commission (DRC) (www.drc.org.uk). Internationally, social model insights are said to have been incorporated into the newly developed World Health Organisation’s (WHO) International Classification of Functioning set to replace its outmoded and discredited predecessor the WHO International Classification of Impairment, Disability and Handicap (see Bury, 2000; Hurst, 2000; Pfeiffer, 2000; WHO, 2002). All of which has, rightly, prompted considerable debate within and without the disabled people’s movement. It is important to remember therefore what the social model of disability actually is, as it seems to mean different things to different people. A model is what social scientists call a ‘heuristic device’ or an aid to understanding. A good model can enable us to see something which we do not understand because in the model it can be seen from different viewpoints . . . it is this multi-dimensioned replica of reality that can trigger insights that we might not otherwise develop. (Finkelstein, 2002, p. 13) Hence, the social model of disability represents nothing more complicated than a focus on the economic, environmental and cultural barriers encountered by people viewed by others as having some form of impairment. These include inaccessible education, information and communication systems, working envi-

What a difference a decade makes 353 ronments, inadequate disability benefits, discriminatory health and social support services, inaccessible transport, houses and public buildings and amenities, and the devaluing of disabled people through negative images in the media—films, television and newspapers. Furthermore, the social model of disability does not ignore questions of impairment and/or the importance of medical and therapeutic treatments. Several writers from both sides of the Atlantic have centred on the cultural production of normality/normalcy and the consequential interpretations of, and responses to impairment (see for example, Hevey, 1992; Abberley, 1993; Davis, 1995; Thomson, 1996). All of which colours our views of self and others. A social model outlook therefore may be used to highlight the interpersonal barriers within the context of personal and family relationships. It also recognises that for many people coming to terms with the consequences of impairment in a society that consistently and systematically devalues disabled people and disabled lifestyles is often a personal tragedy. But the tragedy is that our society continues to discriminate, exclude and oppress people viewed and labeled as disabled. This of course raises important questions about the role of experience within the context of emancipatory disability research. Whilst it may be argued that including information about disabled people’s experiences in research reports is empowering for some isolated disabled individuals and that the inclusion of participant’s narratives is necessary to illustrate the social context in which the research was conducted, it is important to remember that social scientists have been documenting the experiences of powerless peoples, including those who could be defined as disabled, for most of the last century. Moreover, in 1966 the disabled activist Paul Hunt pointed out that much of the writing by people with accredited impairments ‘is either sentimental biography, or else preoccupied with the medical and practical details of a particular affliction’ (p. ix). As already mentioned, there is also the problem of selection and representativeness. Social researchers have yet to devise adequate ways of collectivising experience (Oliver, 1997) and experiential research alone has hitherto to yield any meaningful political or social policy outcomes (Finkelstein, 2002). It is important therefore that within an emancipatory disability research framework, any discussions of disabled people’s experiences, narratives and stories are couched firmly within an environmental and cultural setting that highlights the disabling consequences of a society organised around the needs of a mythical, affluent non-disabled majority. Choice of methods Since its inception, the emancipatory disability research model has generally been associated with qualitative rather than quantitative data collection strategies. This is almost certainly due to the argument that up to now large scale surveys and detailed quantitative analyses have never captured fully the extent and complexity of the oppression encountered by disabled people. Additionally,

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these studies are generally favoured by advocates of objectivity and value freedom, and therefore are easily subject to political manipulation (Abberley, 1992). However, there are numerous debates about the question of objectivity within the social sciences and the sciences generally. The idea that ‘scientists’ of whatever persuasion, social or otherwise, can interpret data without reference to personal values or interests is one that has been promulgated by philosophers, scientists, and later politicians, since at least the enlightenment. The reality is that all information whatever its source and format can be interpreted in a variety of different ways and those charged with the responsibility of interpreting it are influenced by various forces, economic, political and cultural. If anyone is in any doubt about this contention consider the recent ‘scientific’ debates over the causes of global warming, BSE (bovine spongiform encephalopothy) in cattle, Britain’s recent foot and mouth outbreak, and/or the value/dangers of the MMR (measles, mumps and rubella) vaccine for children (Barnes, 2001). In the social sciences it is frequently argued that all judgements are coloured by personal experience and that all propositions are limited by the meanings, implicit or explicit, in the language used in their formulation. Furthermore, it is also suggested that all theories are produced by and limited to particular social groups, and that all observations are theory laden. Historically, medical and academic interests have dominated disability research. These were generally seen as objective whilst alternate views, such as a social model perspective, were viewed as politically biased and/or subjective. As indicated above in many ways this is no longer the case. Moreover, whilst it may prove uncomfortable for some within the field of disability research, there is much common ground between the emancipatory research paradigm and some contemporary approaches to social research— including positivism and ‘post-positivism’. Early positivism is founded on a ‘realist ontology’, namely, the belief that there is a ‘reality out there’ that is driven by ‘natural’ laws. Social ‘science’ is about discovering the ‘true’ nature and process of that reality and, in so doing, aims to predict and control it. Contemporary or post-positivism acknowledges that there are differences between the ‘natural’ and ‘social’ worlds in that the rules that govern the former are regarded as universal. By way of contrast, social realities are variable across time, place, cultures and context. Advocates also acknowledge that values can enter the research process at any point from the identification of the research problem through the collection and interpretation of data, and to the use of research outcomes. It is also recognised that knowledge generated by social enquiry can also influence future behaviour and attitudes (Guba, 1990; Dyson, 1998). Those who adhere to a social model of disability whether traditionalists or rectifiers and regardless of their theoretical leanings—materialist, feminist, or post-modernist—all assert that there is a ‘reality’ out there, namely, the social oppression of disabled people that is historically, environmentally, culturally

What a difference a decade makes 355 and contextually variable, that research is influenced by subjective values and interests, and is politically and socially influential. The crucial difference between advocates of post-positivism and supporters of an emancipatory research perspective lie in their claims to political neutrality. For the former, although it is acknowledged that they are not always attainable, objectivity and value freedom are the stated goals, for the latter, political commitment and empowerment are the unequivocal aims. Inevitably, this leads to accusations that politically committed researchers reveal little more than a previous allegiance to a particular version of social reality, and/or that by interpreting everyday life in a particular way they deny the significance of other perspectives, actions and beliefs (Silverman, 1998). Although similar criticisms can be made of all social research, it is important to offset such censures. Therefore, researchers must make their standpoint clear at the outset. This means stating clearly their ontological and epistemological positions and ensuring that the choice of research methodology and data collection strategies are logical, rigorous and open to scrutiny and commensurate with the goals of the sponsoring organisation and research participants (Barnes, 1992). Furthermore, all data collection strategies have their strengths and weaknesses. It is not the research methods themselves that are the problem, it is the uses to which they are put. Throughout the modern epoch, politicians and policy makers of all persuasions have used figures and statistics to add weight to their arguments and/or to justify particular actions or policy decisions and initiatives. Since its inception in the 1960s the disabled people’s movement has used similar tactics to highlight the various deprivations encountered by people with accredited impairments and labelled disabled. The BCODP research on discrimination mentioned above, for example, was heavily reliant on Government figures to underline the case for anti-discrimination legislation. Moreover, Zarb and Nadash (1994) utilised both quantitative and qualitative research methods to substantiate the argument for direct payments for disabled people to employ their own personal assistants. Similarly, the National Centre for Independent Living’s recent national study of services controlled and run by disabled people employed a similar array of research strategies and procedures (Barnes et al., 2000). The BCODP Independent Living Committee commissioned both projects, the former was funded by the JRF and the Community Fund financed the latter. Empowerment, dissemination and outcomes The rationale of the emancipatory disability research paradigm is the production of research that has some meaningful practical outcome for disabled people. After all, emancipation is about empowerment. Yet all research produces data. It could therefore be argued that all research is empowering. The accumulation of data generates knowledge and knowledge is empowering, or so the story goes. However, the new millennium is said to be the information age,

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but it is also the age of information overload. Too much information can often lead to confusion, uncertainty and apathy, and so be dis-empowering. Although this is a major problem for all sections of society, it is especially so for disabled people such as those from minority ethnic communities, people designated with learning difficulties, deaf people and older disabled people, who are routinely disadvantaged by inadequate and inaccessible education, information and communication systems. Whilst this can generate a general disenchantment with social research, it can also lead to a reliance on those who generate research findings, namely, researchers. It is frequently argued that the principal beneficiaries of social research are the researchers themselves (Hunt, 1981; Chambers, 1983; Oliver, 1999). Whilst this may be true for some sections of the research community, and I include myself here, I’m not sure that this is the case for the vast majority of social researchers. Due to the insidious but seemingly relentless encroachment of market forces into the organisations that control research production, a career in social research is more often than not characterised by financial and social uncertainty. For most researchers, employment is linked to the length of the research contract. It is however the case that, historically, many social researchers have undertaken research on sensitive social issues without serious reference to the interests and needs of those being researched, and critics have argued that this is especially evident within the context of disability research (Hunt, 1981; Oliver, 1992). But can emancipatory disability research offer anything different? I would argue that it can and has. Partly because of all the reasons already mentioned but also because as Oliver (1997, p. 20) has pointed out, empowerment is not something that can be given, it is something that people must do for themselves. The salient point here relates to ownership. Within an emancipatory framework it is organisations controlled and run by disabled people that devise and control the research agenda and, equally important, to whom and how the research findings should be disseminated. Advocates of this perspective recognise that research outcomes in themselves will not bring about meaningful political and social transformation, but that they must reinforce and help stimulate further the demand for change. Hence, the main targets for emancipatory disability research are disabled people and their allies. Here again the BCODP research on discrimination provides a useful example. The data from the project were disseminated in various forms and formats. This included presentations by all those involved in the research project at numerous venues and locations throughout the UK and Europe during 1992–93, the production of various articles in journals, magazines and the popular press and an eight-page summary leaflet: the latter was produced in Braille and on tape for people with visual impairments. Two thousand leaflets were produced and distributed free of charge to all BCODP groups and supporters during 1992–93. (Some of the printed material is now available on the Internet via the disability archive UK (www.leeds.ac.uk/disabilitystudies/archiveuk/index). In this way the research made an important contribu-

What a difference a decade makes 357 tion to the further politicisation of disabled people both in the UK and across Europe. The book that BCODP produced in 1991 on disabled people and discrimination in the UK has been the basis for people’s thought throughout Europe . . . It is a very important book. (Hurst, 1995, p. 95) I would argue that this particular piece of research played a crucial role in getting anti-discrimination legislation on to the statute books in the UK. I would also contend that the production and dissemination of the numerous projects on direct payments and personal assistance schemes generated by disabled people’s organisations, only some of which are cited above, provided substance to the argument for the introduction of the 1996 Community Care (Direct Payments) Act. This is not to suggest that these projects by themselves are responsible for these outcomes, they certainly are not, but they did provide some credence to the growing demand for the policy changes put forward by disabled activists and their confederates. And, in so doing, they made an important contribution to the further mobilisation of the disabled people’s movement. However, whether the policy outcomes in terms of the changes to the law will live up to disabled people’s expectations is another matter. There is now growing concern within the disabled people’s movement over the incorporation of disability issues into the mainstream political process and what is seen as the effective neutralisation of the radicalism that once characterised Britain’s disabled people’s movement (Coalition, 2000a,b). But whether such concerns can engender the demand for further research is something that disabled people and their organisations must decide for themselves. It is important to remember here that doing emancipatory disability research cannot and should not be conceived in terms of a unitary project or, indeed, a group of projects, but rather as an ongoing process (Barnes, 2001) the organisation and content of which can only be determined by disabled people and their organisations.

Conclusion Much has changed over the last 10 or so years in the field of disability research. There can be little doubt that the arrival of the social model of disability and the emancipatory research paradigm has had an important impact on agencies and researchers currently engaged in disability research. Where once the disability research agenda was subject almost exclusively to the interests and whims of politicians, policy makers and professional academics, now the situation is somewhat different. Due to a combination of factors including the burgeoning disabled people’s movement and the activities of a small but influential group of predominantly disabled writers and researchers the space has been created within the research establishment for researchers to pursue an implicitly, if not explicitly, emancipatory disability research agenda if they so wish.

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For the reasons identified above this is not a particularly easy task. For researchers to espouse a specifically partisan approach to researching disability, or any remotely controversial area of enquiry for that matter, carries with it certain risks that must be carefully considered before the adoption of such a position. Nonetheless, the argument presented here suggests that when directly linked to disabled people’s ongoing struggle for change, doing emancipatory disability research can have a meaningful impact on their empowerment and the policies that effect their lives. Whether or not there is a future for this approach depends on several factors, not least of which is the future of Britain’s disabled people’s movement and, of course, the support available to those who choose to adopt and nurture its development within institutions and universities that aspire to conduct disability research.

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What a difference a decade makes 359 Brown, S.C. (2001) Methodological paradigms that shape disability research, in: G.L. Albrecht, K. Seelman & M. Bury (Eds) Handbook of Disability Studies (London, Sage). Bury, M. (1996) Disability and the myth of the independent researcher: a reply, Disability & Society, 11(2), pp. 111–113. Bury, M. (2000) A comment on ICIDH2, Disability and Society, 15(7), pp. 1073–1077. Campbell, J. & Oliver, M. (1996) Disability Politics: understanding our past, changing our future, (London, Routledge). Chambers, R. (1983) Rural Development: putting the last first (Harlow, Longman). Charlton, J.I. (1998) Nothing About Us Without Us: disability oppression and empowerment (Berkeley, CA, University of California Press). Clough, P. & Barton, L. (1995) Making Difficulties (London, Paul Chapman). Clough, P. & Barton, L. (1998) Articulating with Difficulties (London, Paul Chapman). Coalition (2000a) Where have all the activists gone: part 1, Coalition: the Magazine of the Greater Manchester Coalition of Disabled People, August (Manchester, The Greater Manchester Coalition of Disabled People). Coalition (2000b) Where have all the activists gone: part 2, Coalition: the Magazine of the Greater Manchester Coalition of Disabled People, October (Manchester, The Greater Manchester Coalition of Disabled People). Davis, L. (1995) Enforcing Normalcy: disability deafness and the body (London, Verso). DHS (1992) Special issue: researching disability, Disability Handicap and Society, 7(2). Driedger, D. (1989) The Last Civil Rights Movement (London, Hurst and Co.). Dyson, A. (1998) Professional intellectuals from powerful groups: wrong from the start, in: P. Clough & L. Barton, Articulating with Difficulty (London, Paul Chapman). Edgerton, R. (1967) The Cloak of Competence: stigma in the lives of the mentally retarded (Berkeley, CA, University of California Press). Finkelstein, V. (2002) The social model of disability repossessed, in: Coalition: the Magazine of the Greater Coalition of Disabled People, February, 10–16. Goffman, E. (1961) Asylums (Harmondsworth, Penguin). Goffman, E. (1968) Stigma (Harmondsworth, Penguin). Guba, E. G. (1990) The alternative paradigm dialog, in: E.G. Guba (Ed.) The Paradigm Dialog (London, Sage). Harris, A. (1971) Handicapped and Impaired in Great Britain (London, HMSO). Hevey, D. (1992) The Creatures Time Forgot (London, Routledge). Hunt, P. (Ed.) (1966) Stigma: The Experience of Disability (London, Geoffrey Chapman). Hunt, P. (1981) Settling accounts with the parasite people, Disability Challenge, 2, pp. 37–50. Available on the Disability Archive: www.leeds.ac.uk/disability-studies/ archiveuk/index. Hurst, R. (1995) International perspectives and solutions, in: G. Zarb (Ed.) Removing Disabling Barriers (London, Policy Studies Institute). Hurst, R. (2000) To revise or not to revise, Disability & Society, 15(7), pp. 1083–1087. Illich, I. et al. (1977) Disabling Professions (London, Marion Boyars). Martin J. et al. (1988) The Prevalence of Disability Among Adults (London, HMSO). Mercer, G. (2002) Emancipatory disability research, in: C. Barnes, M. Oliver & L. Barton (Eds) Disability Studies Today (Cambridge, Polity). Miller, E.J. & Gwynne, G.V. (1971) A Life Apart (London, Tavistock). Moore, M., Beasley, S. & Maelzer, J. (1998) Researching Disability Issues (Buckingham, Open University Press). Morgan, H., Barnes, C. & Mercer, G. (2001) Creating Independent Futures: Stage Two Report (Leeds, The Disability Press).

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Morris, J. (1989) Able Lives (London, The Women’s Press). Murphy, R. (1997) The Body Silent (London, Phoenix House). Oliver, M. (1983) Social Work with Disabled People (Tavistock, Macmillan). Oliver, M. (1987) Re-defining disability: some issues for research, Research, Polity and Planning, 5, pp. 9–13. Oliver, M. (1990) The Politics of Disablement (Tavistock, Macmillan). Oliver, M. (1992) Changing the social relations of research production, Disability, Handicap and Society, 7(2), pp. 101–114. Oliver, M. (1997) Emancipatory disability research: realistic goal or impossible dream, in: C. Barnes & G. Mercer (Eds) Doing Disability Research (Leeds, The Disability Press). Oliver, M. (1999) Final accounts with the parasite people, in: M. Corker & S. French (Eds) Disability Discourse (Buckingham, Open University Press). Oliver, M. et al. (1988) Walking Into Darkness: The Experience of Spinal Cord Injury (Tavistock, Macmillan). Oliver, M. & Zarb, G. (1992) Personal Assistance Schemes in Greenwich: an evaluation (London, University of Greenwich). Parsons, T. (1951) The Social System (New York, The Free Press). Pfeiffer, D. (2000) The devils are in the details: the ICIDH2 and the Disability Movement, Disability & Society, 15(7), pp. 1079–1082. Priestley, M. (1998) Constructions and creations: idealism, materialism and disability theory, Disability & Society, 5(1), pp. 75–93. Rioux, M.H. & Bach, M. (1994) Disability is Not Measles (Toronto, Ont., Roeher Institute). Scambler, G. & Hopkins, S. (1986) Being epileptic: coming to terms with stigma, Sociology of Health and Illness, 8, pp. 26–43. Scheff, T. (1966) Being Mentally Ill: a sociological theory (London, Weidenfield and Nicolson). Shakespeare, T. (1996a) Rules of engagement: doing disability research, Disability & Society, 11(2), pp. 115–119. Shakespeare, T. (1996b) Disability, identity, difference, in: C. Barnes & G. Mercer (Eds) Exploring the Divide: illness and disability (Leeds, The Disability Press). Silverman, D. (1998) Research and Social Theory, in: C. Seale (Ed.) Researching Society and Culture (London, Sage). Stone, E. & Priestley, M. (1996) Parasites, pawns and partners: disability research and the role of non-disabled researchers, British Journal of Sociology, 47(4), pp. 699–716. Swain, J. (1995) Constructing participatory research in principle and in practice, in: P. Clough & L. Barton (Eds) Research and the Construction of Special Educational Needs (London, Geoffrey Chapman). Szasz, T.S. (1961) The Myth of Mental Illness: foundations of a theory of personal conduct (New York, Dell). Thomas, C. (1999) Female Forms: experiencing and understanding disability (Buckingham, Open University Press). Thomas, P. (2002) The social model of disability is generally accepted, Coalition: the Magazine of the Greater Manchester Coalition of Disabled People, February, pp. 17–21. Thomson, R. G. (Ed.) (1996) Freakery: culture spectacles of the extraordinary body (New York, New York University Press). Townsend, P. (1979) Poverty in the United Kingdom (Harmondsworth, Penguin).

What a difference a decade makes 361 Truman, C., Mertens, D.M. & Humphries, B. (Eds) (2000) Research and Inequality (London, UCL Press). WHO (2002) International Classification of Functioning, Disability and Health (Geneva, World Health Organisation). Available at: www3.who.int/icf/icftemplate.cfm. Wood, P. (1981) International Classification of Impairment, Disability and Handicap (Geneva, World Health Organization). UPIAS (1976) Fundamental Principles of Disability (London, Union of Physically Impaired Against Segregation). Available on the Disability Archive: www.leeds.ac.uk/ disability-studies/archiveuk/index. Zarb, G. & Nadash, P. (1994) Cashing in on Independence (Derby, The British Council of Disabled People).

Index

The arrangement is letter-by-letter. Abberley, P. 271 able-ism 42, 47 abuse 205, 207, 291–2 access: lack of 197–8; to resources 299–301 Access-ability Lothian 319 accessibility: of research findings 340–2 accidents: as disability attributions 42–3; see also industrial injuries accountability: emancipatory disability research 350–2 action research 348 activism 3, 130, 213 ADA (Americans with Disabilities Act) see Americans with Disabilities Act 1990 ADAPT 133 advocacy 59, 332–3; research as 339–40 aesthetics: of disability 137–9 Afghanistan 169–78 ageing 12, 32, 155–7, 158; see also old age ageism 188 ‘aggrandizement’ 254–5 alienation: research as 269–72, 284, 285 All Wales Strategy (AWS) 328, 329, 330–1 Americans with Disabilities Act 1990 (ADA) 71, 86, 134, 148, 218–20, 228–31 Amin, Samir 224, 232–3 anti-discrimination: BCODP (British Councils of Organisations of Disabled People) research project 349, 350–1, 355, 356–7 anti-discrimination legislation 13, 63, 348 anti-psychiatry 154 Aoi Shiba 206, 207–9

Ariff, Haji Zainul 194 Asad, T. 308 Aspis, Simone 331, 343 assimilationist perspective 32–3 assumptions: false 77–8 Atkinson, D. 330 attributions 42–3 authorial control 310–11 autonomy 66–7 AWS (All Wales Strategy) 328, 329, 330–1 Bakhtin, M.M. 317 Banks, Olive 57 Barker, R.G. 22 Barnes, Colin 56, 67, 108, 114, 312, 334, 339 Baudrillard, J. 100 BCODP (British Councils of Organisations of Disabled People) 58, 65, 67, 112, 158, 187, 295 BCODP research projects 349, 350–1, 355, 356–7 beauty 45–6, 138 Beauvoir, Simone de 284 Becker, Howard 267 Bendelow, G. 102 Benedict, Ruth 129 benefit distribution 159 Bercovici, Sylvia 259 Berkeley, USA 133 Binet test 82, 84 biological foundationalism 113 black consciousness groups 58 black disablement 294–305 black feminists 297 Blanchflower, David 226 Blanck, Peter 226 Bloor, M. 310–11

Index 363 Boas, Franz 129 the body 92–7; phenomenological 101–4; and post-structuralism 98–101 body images 138 body–impairment debate 91–2 Bogdan, Robert 245 Boggs, Carl 66 Booth, T. and W. 333, 339 Bourdieu, P. 315 Bourne, J. 268, 272, 279 Bragg, Lois 126, 131, 139 Brand, K.W. 67 Branfield, Fran 135, 140 Britain 3, 11, 15–18 British Councils of Organisations of Disabled People (BCODP) see BCODP Brown, Wendy 112, 119 Browne, Susan E. 43, 46 built environment 94 Bunch, Charlotte 287 Burgdorf, Robert and Marcia 71 Burgdorf, Robert Jr 220 Bury, M.R. 31, 32, 339 Bush, George 228 Butler, Benjamin 81 Butler, Judith 117, 122 Campaign against Patronage (CAP) 54 Campaign for Accessible Transport (CAT) 54, 56 Campaign for Mentally Handicapped People 326 Campbell, Alan 315 Campbell, J. 136 Campbell, Peter 185 CAP (Campaign against Patronage) 54 capitalism 16, 18, 29, 32, 33, 153, 220–1, 222, 224–8, 229–32 Carby, H. 297 carers: emotional bonds 9 Carr, W. 273 Castells, M. 111 CAT (Campaign for Accessible Transport) 54, 56 Cawson, Alan 65 centres for independent living 213–14, 215 cerebral palsy 207–8 ‘challenged’ women 48 Chambers, R. 267–8, 271–2 Chappell, A. 327, 336, 340 charities 58, 65, 68, 116, 147 charity 53, 56, 60, 200 Charter for the Disabled, A 10–11

Chesler, M.A. 22 Child Poverty Action Group (CPAG) 65 children: and discrimination 22; research projects 318–19 children’s views 316–17 Child Welfare Law 203 Chomsky, Noam 129 Chronically Sick and Disabled Persons’ Act 10, 11, 12–13 circular causation 49 Citizen Advocacy 332–3, 339 citizenship rights 63 civil rights 328–9 civil rights laws 221–2, 223, 231–2 civil rights movement 55, 58 Claiming Disability Knowledge and Identity 135 class: and disability 18 Cloak of Competence, The: ‘benefactors’ 258–60; case-histories 249–50; deinstitutionalisation 255–6; employment situation 260; inadequacies of 246–7; institutionalisation 250–1; interpretive research 272–3; IQ tests 248–9; methodology 251–2; sample group 248; testimonies 257 COC see Cloak of Competence, The cohesive communities 133 Colker, Ruth 220 collective empowerment 113–14 Community Based Rehabilitation 169, 170 community care 9, 151, 161–5 Community Care (Direct Payment) Act (1996) 148, 357 community living: Japan 210–12 Community Services Administration 221 community social services models 159–64 conferences: Japan 213; Researching Disability Conference (1992) 59, 348; Society for Disability Studies Conference 126 congenital defects 28 Corker, Mairian 133, 310, 313–14, 315, 317 cosmopolitanism 314–15 counter hegemonic writing 313–14 courses: on disability studies 3–4 CPAG (Child Poverty Action Group) 65 critical enquiry see emancipatory research critical social research 348 Crossely, Nick 101, 103 cultural exchange: form of ethnography 308

364

Index

cultural identity 135–6, 137–9 culture: definition of 128–31; disability see disability culture; as historical/linguistic 131–4, 139; as personal/aesthetic 137–9, 140; as social/political 135–6, 140 Dalton, R.J. 64 Darwin, Charles 79 Darwin, Erasmus 79 Davey, A. 22 Davis, F. 22–3 the Deaf 126, 132, 133 Deaf Culture 126, 129 de-biologisation 96 DeFelice, Robert 138 deinstitutionalisation 169, 255–6, 329 DeJong, G. 59 democracy: competing models 190–1 demonstrations 54–6, 62, 207; see also protests denial: as analysis 256–8 Denver 7 plaque 133 deregulation 221 Derrida, Jacques 119, 120 developmental disabilities 70–1 deviancy theory 328 ‘deviants’ 253–4 Diderot, D. 109 DIG (Disablement Income Group) 3, 65, 66 Diller, Matthew 220 direct action: disabled people’s movement 54–7 direct payments: BCODP (British Councils of Organisations of Disabled People) research project 349 disability: attitudes to 17, 28–9, 42–3, 60; definition of 18, 94, 113, 347–8; functional definitions 12; use of term 117 Disability Alliance (DA) 65 Disability and Society 4, 132 disability attributions 42–3 disability civil rights: US legislation 218–20 disability culture 137; background 125–7; framework for analysis 139–40; as historical/linguistic 131–4, 139; as personal/aesthetic 137–9, 140; roots of 131; as social/political 135–6, 140; syncretism of 127 Disability Discrimination Act (1995) 148 Disability, Handicap & Society (Disability & Society) 348

disability–impairment distinction 112–14 Disability in Britain 11–13 disability movement 91, 94, 136 Disability Politics 136 Disability Politics and Community Care 337 disability press 132 Disability Rag 132 disability research: alienation 269–72; feminist perspective 283–92; history of 274–6; origins of 347; problems in 267–8; see also research disability rights activists 130 Disability Rights Commission 352 Disability Rights Movement (DRM) 219 disability rights movements: Japan 206–10, 215–16 disability rights organisations: Japan 211–12 disability studies 3–4, 133, 136; and learning disability 327–8 disability theory: development of 3–6 disabled activists 347, 348 Disabled In Action 213 Disabled People’s International 158 disabled people’s movement 54–7, 60–8, 135, 136, 147–8, 187 Disabled Person’s Act of Zimbabwe 134 Disabled State, The 13–14 disabled workers: costs of 228–31 Disablement Income Group (DIG) see DIG disablement movement: ethnic minority groups 298 disablism 279, 292 disadvantages: common features of oppression 29 discrimination 3, 13, 22, 42, 54–5, 136, 159, 162, 206, 219–20 diseases: industrial 26–7 dissemination: of research findings 355–7 domestic relations 71–7 ‘double disadvantage’ 288–9 ‘double oppression’ 294–5 Downer, Jackie 338 Dowson, Steve 189 DRM (Disability Rights Movement) 219 drugs, prescribed 27 Duffy, Yvonne 43, 45 Dugdale, R.L. 81–2 economic distribution 228–32 economic policy: USA 221 economic status 156

Index 365 Edgerton, Robert B. 246, 247, 248–9, 254–5, 259–62, 272, 326, 347 education: women 40–1 EEOC (Equal Employment Opportunity Commission ) 219–20 elderly disabled people 12, 158; see also ageing; old age Ellis, Havelock 83 emancipatory disability research: accountability 350–2; development 348–50; empowerment 355–6; general 346–7; learning disability 326; methods 353–5 emancipatory research 273–4, 276–9, 289, 307, 308, 310, 325, 333–9 embodiment 115 employment 41, 159, 160, 194–5, 218–20, 298–9, 303–4 employment rate 226 empowerment 113–14, 278–9, 314 enlightenment model 276 environmental pollution 28, 153 epilepsy 74, 75 Epstein, Richard 230–1 Equal Employment Opportunity Commission (EEOC) 219–20 equality 163–4 Equal Rights for Disabled People: the case for a new law 56 Essay on Population 79 ethnic minorities 8, 294–305 Eugenics Movement 71, 79–85 Eugenics Protection Law 209 Evers, H. 301 evolutionary model of disability 15–18 expenditure 160 experience: as a term 113 exploitation 24 Fabian Socialist Approach 9 ‘false consciousness’ 60 families: extended 134 family roles: non-economic 157 feminism 7, 8, 57, 58, 63, 97, 98, 113, 117, 283–92 feminist research 278, 285 Fernald, Walter 83 Finch, J. 9 Finkelstein, Vic 4, 15–18, 155, 312, 331, 334, 338, 352 Finkelstein’s evolutionary model 15–18 Fischer, M.J. 314 Fisher, Ronald 80 Foucault, M. 98, 99

Framework for Accomplishments 331 Freedom House 133 Freire, P. 334 French, Sally 118 frustration: assumption of 77 Fuchu Ryoiku Centre 206–7 Full Employment and Balanced Growth Act (1978) (Humphrey-Hawkins Act) 225 functional definitions: of disability 12 funding: research 349, 352 Gabel, Susan 137, 140 Galbraith, James 226 Galton, Francis 80 Ganapathy, R. 195, 196 gay politics 57, 58 Geertz, Clifford 127, 129, 139, 312 genetic links 134 genetics 79–80 genetic testing 71 Giddens, Anthony 115 Gill, Carol 126, 142 Giroux, A. 277 Giroux, H. 130, 131 globalisation 111, 149, 221 Goddard, Henry 82–4 Goffman, Erving 247–8, 252–4, 255–6 Goffman’s Stigma 29, 42 Gough, I. 8 Gould, Brian 10 Gouldner, Alvin 253 Gradwell, Lorraine 336–7 Greenspan, Alan 225 Gregory, J. 13 Griffin, Susan 289 group consciousness 57–61 Hahn, Harlan 138 Handel, A.F. 22 handicap: social origins of 28 health and safety legislation 148 Held, David 66 helper/helped relationship 17–18 Henderson, J. 299–300 hereditary factors 28 ‘heteroglossia’ 313 heterosexism 188 Heumann, Judy 212–13 Hevey, David 97 Hill, David 27 Hill Collins, Patricia 284 historical lineage 132–3 history: of disability research 274–6, 347; of research 272–4

366

Index

Holmes, Oliver Wendell 71 homosexual politics 58 housing allocation 299–300 Howe, Florence 39–40, 42, 46 Howe, Samuel 81 Human Rights Act (1998) 148 human rights violations 205 Humphrey-Hawkins Act (Full Employment and Balanced Growth Act (1978)) 225 Hunt, Paul 312, 353 Hurst, R. 357 Huxley, Thomas 79 identity 30, 56–61, 111, 126, 135, 137–9, 302–4, 315–16; see also self-concept Illich, I. 17 images: of the body 138 immigrants: USA 84 immigration policy 296 Immigration Restriction Act (1924) 84 impairment: attitudes to 24–6; causes of 31; definition 94–6, 347; phenomenological theory 101–4; role of 61; as a social product 26–9, 155; sociology of 92 inclusion 120 inclusive research: learning difficulties 325–6 independent living 3; Japan 211–12; USA 213 independent living centres: Japan 213–14, 215 Independent Living Movement 3 individualistic perspective 152–3, 159–64 industrial injuries 26–7, 41, 193, 198–9 industrial practices 153 industrial reserve army: of labour 8, 224–7, 231 Industrial Revolution 16 industry 162 inequality 163–4 infant mortality rate: Afghanistan 170 inflation 225 Information Based Rehabilitation 176–8 injuries: industrial 26–7 Institute of Public Policy Research (IPPR) report 56 institutional disablism 279 institutional discrimination: BCODP (British Councils of Organisations of Disabled People) research project 349 institutionalisation 248–9, 250 institutions 16, 81, 204–6, 291–2

interactionist sociology 247–8, 252–3 Interactivist perspective 29–31 ‘intercorporeality’ 103 interest groups 64–5 International Classification of Functioning 352 International Labour Office 170 Interpretation of Cultures, The 127, 129 ‘interpretative’ factors 153, 154–5 interpretive research 272–4, 276 interviews 39, 270 involvement, user: representation 181–91 IQ tests 76, 82, 248–9 Irwin, Michael 28 Islam 172 isolation 39–40 ‘issues’: C. Wright Mills 152 Japan: community living 210–12; disability rights movements 206–10, 215–16; general 202–3; independent living centres 213–14, 215; institutional segregation 204–6; traditional welfare 203–4; USA advocates 212–13 Japan Council on Independent Living Centres (JIL) 214 Jay Committee Report 329 job related disabilities 41 Johnson, Mary 45 Joseph Rowntree Foundation 283, 326, 341, 348, 349 Joyce, Stephanie 45 Jukes, The 82 Kalecki, Michel 226 Karn, V. 299–300 Katz, M. 30 Katz, Patricia 226 Kemmis, S. 273 Keywords 113 King, Martin Luther Jr 222 Klein, Ethel 58, 60 Kleinman, A. 103 Kluckhohn, C. 128, 131 Komyo Gakko 207 König, A. 170 Kroeber, A. 128, 131 Kurume-en 208 labour force 8, 41, 156, 218–20; see also reserve army Labour Force Survey 298 labour market 159 laissez-faire: principle of 161–2

Index 367 language 132; power of 78 Lather, P. 273 Laughlin, Harry 84 Law for the Welfare of People with Disabilities (1949) 203 learning difficulties: research 325–6 learning disability: and disability studies 327–8; as a term 327 legislation 13, 71–7, 134, 148, 197, 198, 203, 218–20, 227 Leonard, P. 121 Levi-Strauss, Claude 129 liberal rights model 222–3 liberation movements 62–4, 187 Liberation Network of People with Disabilities 3, 158, 290 liberation struggles 57–8 ‘Life as a Disabled Child’ project 318–19 Light Rail Transit 197 Linton, Simi 135 Louis Harris and Associates survey 39 Lourde, Audre 291 Luckin, Bill 247 Lukes, S. 275, 280 Maaruf, Annuar 199 McLaren, Peter 130 Maharaba Colony 207 Mainstream 132 maladjustment: assumption of 77 Malaysia 193–201 malnutrition 28 Malthus, Thomas 79 Mandel, Ernest 220, 221 Manifest Destiny 80 March, J. 336 marginalisation 296 market welfare 182 marriage 40, 74–5 Martha’s Vineyard, USA 126, 133 mass media 112, 138 materialist social model 110 Mayerson, Arlene 220 medicalisation 14, 96–7 medical model 92, 97, 290, 309, 347, 354 Melucci, A. 67–8 Mendel, Gregory 79–80 mental health 154 mental retardation: concept of 245–6, 262; as a label 247–8; as a socially constructed syndrome 247; studies of 251–2 Merleau-Ponty, M. 101, 103 methodological individualism 275

Mills, C. Wright 152 misidentification: of disabled people 31–2 mobility 40 models of disability 309–10 Momm, W. 170 moral career 254 Morris, Aldon 55 Morris, Jenny 40, 55, 101, 314, 338 ‘mourning’ theories 33 Mouth 132 movements: disability movement 91, 94, 136; Disability Rights Movement (DRM) 219; disabled people’s movement 54–7, 60–8, 135, 136, 147–8, 187; DRM (Disability Rights Movement) 219; ethnic minority groups 298; Eugenics Movement 71, 79–85; Independent Living Movement 3; Japan 206–10, 215–16; liberation 62–4, 187; new social 61–8; post-materialist 62–4; power movement 158; Self Advocacy Movement 3; USA 213; women’s movement 98 multi-culturalism 130 ‘multi-dimensional textualisation’ 313 multiple identities 141 ‘multi-verisimilitude’ 313 Nadash, Pamela 351, 355 narrative research 338–9 National Assistance Act (1948) 10 national disability income 10, 11, 18, 275–6 national disability survey (OPCS 1986) 269–71 National League of the Blind 147 National Pension: Japan 203 National Survey 10 National Welfare Policy 200 ‘new racism’ 295–6, 301–2 new social movements 61–8 new social movement theory 61–6 Nicholson, L. 113 non-disabled researchers 291 No Pity 133 Norah Fry Research Centre 341 normalisation 326, 328–33 nurturance 43–5 nutrition 28 objectivity: in research 354 O’Brien, John 331 Occupational Safety and Health Act 198 Offe, Claus 63

368

Index

Office of Population Census and Surveys (OPCS) 269 Okely, J. 309, 318 old age 287–8, 290; see also ageing older women 287 Oliver, Mike 22, 33, 56, 62, 66, 96, 110, 111, 113–14, 117, 118, 120, 136, 140, 155, 187, 284, 315, 346, 348 Operation Salam 169 oppression 22, 23–6, 29–34, 40, 59–60, 94, 102, 155, 297, 316–17 organisations 3, 158, 182, 187–8, 351, 352 Origin of the Species 79 Oswald, Andrew 226 the Other 130–1 Outsiders 267 pain 102 parenting legislation 75–7 parents 47 Parsons, Talcott 47, 129, 347 participation 38, 39–41, 49, 184, 187–91 participatory democracy 190–1 participatory research 308, 325, 330, 333–9 passing (as normal) 255–6, 258 paternalistic philosophy 13, 60, 68, 200, 245 patronage 68, 147 Pearson, Kaarl 80 pensions 203 People First London/Hillingdon 331, 332, 340 people with learning difficulties: inclusive research 325–6 perfection: tyrannies of 97–8 Personal Attendants Program for Physically Disabled Persons 211 personal liberation 289–90 ‘personal tragedy’ theory 8, 14, 18, 19, 103, 290 ‘personal troubles’ 152 Perspectives on Disability 133 phenomenological theory of impairment 101–4 Phenylketonuria (P.K.U.) 28 physical attractiveness 45–6 Pierson, Christopher 199 Pinker, Robert 165 Piore, Michael 226 placement services: Malaysia 196 Plain Facts initiative 341–2 planning structures: Afghanistan 172–6 ‘plus factor’ 48; women with disabilities 42

policies: development of 159–64; general 147–50; harmful 147; international 148–9; Japan 203; Malaysia 194–5 policy change 275–6 poliomyelitis 21, 27 political activism 3 political consciousness 60 political economy 223–4 political solidarity 134, 135 political status 157–8 ‘polyphonic co-operative story telling’ 313 Poor Law Act (1601) 16, 32 population: of disabled people 27–8 positivism 153–4, 272, 274–5, 354 post-materialist movements 62–4 post-modernism 93, 118–21, 129–31, 140 post-positivism 354–5 post-structural ethnography 307 post-structuralism 98–101, 119, 129–30, 140, 314–16 poverty 147, 153, 160 power movement 158 pressure groups 158 pride 58, 104 Priestley, M. 109–10, 122, 314, 337 Primitive Cultures 128 professional groups 162–4, 245 projects: BCODP research 349, 350–1, 355, 356–7; ‘Life as a Disabled Child’ 318–19 protests 207–9, 213; see also demonstrations Public Assistance Law 203 publications 132–3 public expenditure 160 ‘public issues’ 152 ‘pure economics’ 224, 232–3 qualitative research 272–4 ‘queer theory’ 97 Rabinow, P. 314–15 racial oppression 23–5, 29, 32–3 racism 22, 188, 279, 287, 295–6 radicalism 54–7 Ramazanoglu, Caroline 287, 291 ‘reasonable accommodation’ 228, 231 ‘reciprocity of dependency’ 9 Reé, Jonathan 109 reflexivity 307, 308–9 rehabilitation 163–4, 169–70, 171–2, 194 Rehabilitation Act (1972) 213 reports: Equal Rights for Disabled People: the case for a new law (IPPR) 56; Jay

Index 369 Committee Report 329; Seebohm Report 10 representative democracy 190–1 representativeness: user involvement 181–91 research: accessibility of 340–2; as advocacy 339–40; as alienation 269–72; and feminism 283–92; funding 349, 352; general 241–3; history of 272–4, 347; influence of 316–19; influence of normalisation 329–30; problems in 267–8; relevance of 311–16; social relations of 268–9; strategies 307 researchers: careers of 356; non-disabled 291; as outsiders 267–8 Researching Disability Conference (1992) 59, 348 ‘Researching Physical Disability’ seminars 348 reserve army: of labour 8, 224–7, 231 residential care 9; A Charter for the Disabled 11; see also institutions resource allocation 63, 299–301 respondent validation 310–11 Return-to-Work legislation 227 Rich, Adrienne 285 Riddell, S. 336 Riley, Denise 117 Roberts, Ed 133, 212, 213 Roberts, Paul Craig 229 Rockwell, H. 119 Rodgers, J. 337 ‘rolelessness’ 47 Rolling Quads 212 Rolph, Sheena 333 Roosevelt, Franklin D. 133 Rosaldo, Renato 129 Rothstein, M. 71 Rowan, J. 269 rural poverty: research 269–70, 271–2 Ryan, William 57 Sabagh, Georges 254 Safilios-Rothschild, C. 56–7 Sahlins, Marshall 129 Salamanca Statement 134 Sampson, E.E. 120 Saxton, Marsha 39–40, 42, 46 Scheff, Thomas 347 schools 207 Schoulz, B. 330 SCIE (Social Care Institute for Excellence) 350 Scott, Alan 61, 66

Scott, Joan 111 Scott, Robert A. 263 Sedwick, P. 154, 155 Seebohm Report 10 segregation 16–17, 55, 83, 147, 159, 162–3, 204–6 Seidman, S. 108, 110, 315 Self Advocacy Movement 3 self-concept 38, 46–8, 49; see also identity self-esteem 46–7 self-help 160 self-organisation 187–8 self-selected roles 47–8 self-understanding 279 seminars 348 service agencies 182, 188–91 service providers 330–2 sex/gender distinction 118 sexism 42, 43, 47, 188 sexual abuse 205 sexuality 44–5 sexual oppression 23–5, 29, 32 Shakespeare, Tom 100, 101, 115–16, 120, 136, 187, 308, 311, 313, 318, 339, 340–1 Shearer, A. 12–13 Shelter 65 ‘sick role’ 47–8, 157, 162, 164 Simon, Paul 228 simultaneous oppression 297 sin: myth of 78 sit-ins 207 Smith, Dorothy 285 social aetiology: of disability 153–5 Social Care Institute for Excellence (SCIE) 350 social engineering approach 275–6 ‘social indefinition’ 47 social isolation 39–40 social model 3, 15, 18–19, 91, 92, 93–6, 148, 159–62, 309–10, 334, 348, 352–3 social movements, new 61–6 social oppression 59–60, 94, 155; see also oppression ‘social oppression’ theory 8, 18, 94 social policy: development 159–64; and disability 7–8 social pressure groups 65–6 social relations: of research production 268–9 Social Relief Regulation 203 social role valorisation 328, 330; see also normalisation social services personnel 162–4

370

Index

social status 156–7 social theories: relevance of 108–9 social theory of disability see social model Society for Disability Studies 133 Society for Disability Studies Conference 126 ‘socio-culture’ 49; women with disabilities study 38, 41–6 socio-economic participation: women with disabilities 39–41 sociology of disability 21–2 sociology of impairment 92, 98–101, 117 socio/political interpretation 4 solidarity 135 spatial mobility 40 Spelman, Elizabeth 286 Stalker, Kirsten 327–8, 336 Stanley, Liz 285, 289 stereotypes: of disabled persons 31–2, 77–8 sterilisation 71–4, 83–5, 147 sterilisation laws 71, 72–4, 84–5 stigma 42, 58, 172 stigmatisation 136 Stoddard, Lothrop 80–1 Stone, Deborah 10, 13–14, 32, 33, 155 Stone, E. 122, 314 Stop Telethon demonstration 55 structural change: research discourse 312 ‘structural’ factors 153–4 structural model 159–62 suffering 103 support services 199–200 surveys: Labour Force Survey 298; Louis Harris and Associates 39; national disability survey (OPCS 1986) 269–71; National Survey 10; US Census Bureau’s survey 39 Sutherland, A. 29 Swain, John 350 Sweden 3 syncretism: of disability culture 127, 141–2 Szasz, Thomas 154, 159, 347 Task of Social Hygiene, The 83 Taturo Minobe 206 Taylor, G. 135 Taylor, Steven 245 technology: effects of 16 Thalidomide 27 Thanasayan, A. 197 theories of disability see medical model; social model theory of disability: as oppression 29–34 Titmuss, Richard 151

Topliss, E. 9, 10, 11 Townsend, P. 9, 155–6 Townsley, R. 341–2 tragedy: assumption of 77; personal, theory of see ‘personal tragedy’ theory training 173–4, 194–6, 207 tranquilisers 27 ‘troubles’: C. Wright Mills 152 Tucker, Bonnie 220 Tugwell, Ian 193–4, 195 Turner, Bryan 97, 101 Turner, Terence 93 Tylor, E.B. 128, 139 tyrannies of perfection 97–8 Udny Yule, G. 80 unattractiveness 45–6 unemployment: compulsory 224–8; ethnic minority groups 298–9 unemployment rate: USA 218–19 Union of the Physically Impaired Against Segregation (UPIAS) 3, 158, 187, 312, 347 United Kingdom (UK) see Britain United Nations 169 United States of America (USA) 3, 4, 5, 13, 78, 80, 84, 126, 133, 212–13, 221 UPIAS (Union of the Physically Impaired Against Segregation) 3, 158, 187 US Census Bureau’s survey 39 user involvement: representativeness 181–91 vaccination 27 vaccine damage 153 validation: research 310–11 Vernon, Ayesha 135, 136 veterans 41, 203; see also war injuries victim-blaming theories 19, 57 videos 133 Vision 2020 193, 200 Vital Signs 133 voice: of disabled people 244–5 volunteer attendants 209 Wade, Cheryl Marie 126 Wagner, Marjorie 47 Walker, Alice 289 Wallen, Jacqueline 47 Wang, Caroline 139 war injuries 43, 54, 147, 163, 174; see also veterans Watson, N. 100, 101, 115–16, 120 Weinberg, Nancy 48

Index 371 Weldon, W.F.R. 80 welfare pressure groups 65–6 westernisation 149 When Billy Broke His Head 133 White, H. 121 Williams, F. 330 Williams, P. 330 Williams, Raymond 113 Williams, S. 102 Williams, Val 336, 337 Wilson, David 81 Wilson, Frank 66 Wise, Sue 289 wives: role of 44 women: in Malaysia 200; older 287–8 women’s movement 54, 57, 97, 99; see also feminism

women with disabilities: literature on 37–8; study of 38–49 work 156 work-based impairments 26–7, 41 work ethic 161, 163, 231 workplace injuries 153 workshops: for the disabled 212 World Health Organisation (WHO) 350 Yelin, Edward 226 young disabled people 31–2, 54 Zarb, Gerry 335, 340, 351, 355 Zenshoren 209 Zola, Irving K. 4, 59

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