Disability Rights 0754624528, 9780754624523

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Disability Rights

The International Library of Essays on Rights Series Editor: Tom Campbell

Titles in the Series: Disability Rights Peter Blanch

Indigenous Rights Anthony Connolly

Children’s Rights, Volumes I and II Michael D.A. Freeman

Language and Cultural Rights Leslie Green

Consumer Rights Geraint Howells and Iain Ramsay

Group Rights Peter Jones

Genocide and Human Rights Mark Lattimer

Theories of Rights Ten Chin Liew

Social Rights Lord Raymond Plant and Selina Chen

Gender Rights Deborah L. Rhode and Carol Sanger

Bills of Rights Mark Tushnet

Disability Rights

Edited by

Peter Blanck University Professor and Chairman, Burton Blatt Institute, Syracuse University

Q Routledge

Taylor & Francis Group

LONDON AND NEW YORK

First published 2005 by Ashgate Publishing Published 2016 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon 0X14 4RN 711 Third Avenue, New York, NY 10017, USA Routledge is an imprint o f the Taylor & Francis Group, an informa business Copyright © Peter Blanck 2005. For copyright of individual articles please refer to the Acknowledgements. All rights reserved. No part of this book may be reprinted or reproduced or utilised 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. N otice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. British Library Cataloguing in Publication Data Disability rights. - (The international library of essays on rights) 1. People with disabilities - Civil rights 2. People with disabilities - Legal status, laws, etc. 3. Discrimination against people with disabilities I. Blanck, Peter David, 1957323.1'087 Library of Congress Cataloging-in-Publication Data Disability rights / edited by Peter Blanck. p. cm. — (International library of essays on rights) ISBN 0-7546-2452-8 (alk. paper) 1. People with disabilities—Civil rights. 2. Discrimination against people with disabilities—Law and legislation. I. Blanck, Peter David, 1957- II. Series. K637.D576 2005 342.08' 7—dc22 2004062271

ISBN 9780754624523(hbk)

Contents Acknowledgements Series Preface Foreword by Christoper McCrudden Introduction

PART I

XI Xlll

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RISE OF DISABILITY RIGHTS

1 Peter David Blanck and Michael Millender (2000), ‘Before Disability Civil Rights: Civil War Pensions and the Politics of Disability in America’, Alabama Law Review, 52 , pp. 1-50. 2 Paul K. Longmore (2000), ‘Disability Policy and Politics: Considering Consumer Influences’, Journal of Disability Policy Studies, 11, pp. 31-39. 3 B.J. Gleeson (1997), ‘Disability Studies: A Historical Materialist View’, Disability and Society, 12, pp. 179-202. 4 Mike Oliver (1984), ‘The Politics of Disability’, Critical Social Policy, 11, pp. 21-32. 5 Leonard Kriegel (1969), ‘Uncle Tom and Tiny Tim: Some Reflections on the Cripple as Negro’, American Scholar, 38 , pp. 412-30.

PART II

Vll

3 53 63 87 99

LAW OF DISABILITY RIGHTS

6

Theresia Degener (1999), ‘International Disability Law - A New Legal Subject on the Rise: The Interregional Experts’ Meeting in Hong Kong, December 13-17, 1999’, Berkeley Journal of International Law, 18, pp. 180-95. 7 Jerry Alan Winter (2003), ‘The Development of the Disability Rights Movement as a Social Problem Solver’, electronic version (26 pp) of Disability Studies Quarterly, 23 , originally pp. 33-61. 8 Lisa Waddington (1996), ‘Reassessing the Employment of People with Disabilities in Europe: From Quotas to Anti-Discrimination Laws’, Comparative Labor Law Journal, 18, pp. 62-101. 9 Lee Ann Basser and Melinda Jones (2002), ‘The Disability Discrimination Act 1992 (CTH): A Three-Dimensional Approach to Operationalising Human Rights’, Melbourne University Law Review, 26 , pp. 254-84. 10 Katharina C. Heyer (2002), ‘The ADA on the Road: Disability Rights in Germany’, Law and Social Inquiry, 27 , pp. 723-62. 11 Reiko Hayashi and Masako Okuhira (2001), ‘The Disability Rights Movement in Japan: Past, Present, and Future’, Disability and Society, 16, pp. 855-69.

121

137

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203 235 275

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12

Christian Courtis (2003), ‘Disability Rights in Latin America and International Cooperation’, Southwestern Journal of Law and Trade in the Americas, 9, pp. 109-30.

PART III

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ASSESSMENT OF DISABILITY RIGHTS

13

Mike Oliver (1992), ‘Changing the Social Relations of Research Production?’, Disability, Handicap & Society, 7, pp. 101-14. 14 Colin Barnes (1996), ‘Disability and the Myth of the Independent Researcher’, Disability & Society, 11, pp. 107-10. 15 Mike Bury (1996), ‘Disability and the Myth of the Independent Researcher: A Reply’, Disability & Society, 11, pp. 111-13. 16 Tom Shakespeare (1996), ‘Rules of Engagement: Doing Disability Research’, Disability & Society, 11, pp. 115-19. 17 Harlan Hahn (1996), ‘Antidiscrimination Laws and Social Research on Disability: The Minority Group Perspective’, Behavioral Sciences and the Law, 14, pp. 41-59. 18 Michael Ashley Stein (2000), ‘Empirical Implications of Title I ’, Iowa Law Review, 85, pp. 1671-90. 19 Peter Blanck, Lisa Schur, Douglas Kruse, Susan Schwochau and Chen Song (2003), ‘Calibrating the Impact of the ADA’s Employment Provisions’, Stanford Law & Policy Review, 14 , pp. 267-90. 20 Jerome Bickenbach and Jeremy Cooper (2003), ‘Does a Needs-Led Delivery of Services Undermine Disability Discrimination Principles?’, Scandinavian Journal of Disability Research, 5, pp. 281-95.

PART IV 21 22

23

24 25

329 333 337 343 363

383

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FUTURE OF DISABILITY RIGHTS

Tom Shakespeare and Nicholas Watson (1997), ‘Defending the Social Model’, Disability & Society, 12, pp. 293-300. Adrienne Asch (2001), ‘Critical Race Theory, Feminism, and Disability: Reflections on Social Justice and Personal Identity’, Ohio State Law Journal, 62, pp. 391-423. Marcia H. Rioux (1994), ‘Towards A Concept of Equality of Well-Being: Overcoming the Social and Legal Construction of Inequality’, Canadian Journal o f Law and Jurisprudence, 7, pp. 127-47. Arlene S. Kanter (2003), ‘The Globalization of Disability Rights Law’, Syracuse Journal o f International Law & Commerce, 30, pp. 241-69. Gerard Quinn (2004), ‘Closing: Next Steps - Towards a United Nations Treaty on the Rights of Persons with Disabilities’, written for this volume and based on a paper delivered for the Valerie Gordan Memorial Lecture at Northeastern Law School on 1 April 2004, pp. 1-23.

Name Index

315

425

433

467 489

519

543

Acknowledgements This volume on Disability Rights is the product of many generous and thoughtful contributors. Ashgate Publishers provided the foresight and encouragement for this major treatment. Jeremy Cooper, Professor of Law at Middlesex University and head of the Disability Law and Policy Research Unit, conceived of the volume and, due to other commitments, graciously passed it to me to edit. Several of my colleagues read various drafts of the original contributions and organization of the contents, and provided most helpful comments, including Maureen DeArmond, Elizabeth Perry, James Schmeling, and Michael Waterstone. I also thank those at the First Annual Richard and Ginny Thornburgh Symposium, University of Pittsburgh, and Carolyn Young, Michael Stein and William Myhill for their valuable comments. My work on the volume was funded in part by grants from the US Department of Education, National Institute on Disability and Rehabilitation Research, for (1) the Rehabilitation Research and Training Center (RRTC) on Workforce Investment and Employment Policy for Persons with Disabilities, Grant No. H133B980042-99, (2) ‘IT Works’, Grant No. H133A011803, (3) ‘Technology for Independence: A Community-Based Resource C enter’, Grant No. H133A021801, and (4) ‘Asset Accumulation and Tax Policy Project’, Grant No. H133A031732; and by generous contributions from Stan and Gail Richards, the Nellie Ball Trust Research Fund, and The University of Iowa Law School Foundation. The volume is dedicated foremost to the next generation of scholars and advocates who will advance disability rights throughout the world. I dedicate my work herein to my parents, Albert and Bertha Blanck. The editor and publishers wish to thank the following for permission to use copyright material. Alabama Law Review for the essay: Peter David Blanck and Michael Millender (2000), ‘Before Disability Civil Rights: Civil War Pensions and the Politics of Disability in America’, Alabama Law Review, 52, pp. 1-50. American Scholar for the essay: Leonard Kriegel (1969), ‘Uncle Tom and Tiny Tim: Some Reflections on the Cripple as Negro’, American Scholar, 38, pp. 412-30. Copyright © 1969 Phi Beta Kappa Society. Canadian Journal of Law and Jurisprudence for the essay: Marcia H. Rioux (1994), ‘Towards A Concept of Equality of Well-Being: Overcoming the Social and Legal Construction of Inequality’, Canadian Journal of Law and Jurisprudence, 7, pp. 127-47. Disability Studies Quarterly for the essay: Jerry Alan Winter (2003), ‘The Development of the Disability Rights Movement as a Social Problem Solver’, electronic version (26 pp) of Disability Studies Quarterly, 23, originally pp. 33-61.

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Iowa Law Review for the essay: Michael Ashley Stein (2000), ‘Empirical Implications of Title I ’, Iowa Law Review, 85, pp. 1671-90. Copyright © 2000 Michael Ashley Stein. John Wiley and Sons, Ltd for the essay: Harlan Hahn (1996), ‘Antidiscrimination Laws and Social Research on Disability: The Minority Group Perspective’, Behavioral Sciences and the Law, 14, pp. 41-59. Copyright © 1996 John Wiley and Sons, Ltd. Melbourne University Law Review for the essay: Lee Ann Basser and Melinda Jones (2002), ‘The D isability Discrimination Act 1992 (CTH): A Three-Dim ensional Approach to Operationalising Human Rights’, Melbourne University Law Review, 26, pp. 254-84. Ohio State Law Journal for the essay: Adrienne Asch (2001), ‘Critical Race Theory, Feminism, and Disability: Reflections on Social Justice and Personal Identity’, Ohio State Law Journal, 62, pp. 391^23. PRO-ED for the essay: Paul K. Longmore (2000), ‘Disability Policy and Politics: Considering Consumer Influences’, Journal of Disability Policy Studies, 11, pp. 31-39. Sage Publications for the essay: Mike Oliver (1984), ‘The Politics of Disability’, Critical Social Policy, 11, pp. 21-32. Copyright © 1984 Sage Publications. Scandinavian Journal of Disability Research for the essay: Jerome Bickenbach and Jeremy Cooper (2003), ‘Does a Needs-Led Delivery of Services Undermine Disability Discrimination Principles?’, Scandinavian Journal of Disability Research, 5, pp. 281-95. Syracuse Journal of International Law and Commerce for the essay: Arlene S. Kanter (2003), ‘The Globalization of Disability Rights Law’, Syracuse Journal of International Law & Commerce, 30, pp. 241-69. Taylor and Francis for the essays: B.J. Gleeson (1997), ‘Disability Studies: A Historical Materialist View’, Disability and Society, 12, pp. 179-202; Reiko Hayashi and Masako Okuhira (2001), ‘The Disability Rights Movement in Japan: Past, Present, and Future’, Disability and Society, 16, pp. 855-69; Colin Barnes (1996), ‘Disability and the Myth of the Independent Researcher’, Disability & Society, 11, pp. 107-10; Mike Bury (1996), ‘Disability and the Myth of the Independent Researcher: A Reply’, Disability & Society, 11, pp. 111-13; Tom Shakespeare (1996), ‘Rules of Engagement: Doing Disability Research’, Disability & Society, 11, pp. 115— 19; Tom Shakespeare and Nicholas Watson (1997), ‘Defending the Social Model’, Disability & Society, 12, pp. 293-300; Mike Oliver (1992), ‘Changing the Social Relations of Research Production?’, Disability, Handicap & Society, 7, pp. 101-14. Copyright © Taylor & Francis. University of California for the essay: Theresia Degener (1999), ‘International Disability Law - A New Legal Subject on the Rise: The Interregional Experts’ Meeting in Hong Kong, December 13-17, 1999’, Berkeley Journal of International Law, 18, pp. 180-95. Copyright © 2000 Regents of the University of California.

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University of Chicago Press for the essay: Katharina C. Heyer (2002), ‘The ADA on the Road: Disability Rights in Germany’, Law and Social Inquiry, 27, pp. 723-62. Copyright © 2002 American Bar Foundation. Lisa Waddington (1996), ‘Reassessing the Employment of People with Disabilities in Europe: From Quotas to Anti-Discrimination Laws’, Comparative Labor Law Journal, 18, pp. 62-101. Copyright © 1996 Lisa Waddington. Every effort has been made to trace all the copyright holders, but if any have been inadvertently overlooked the publishers will be pleased to make the necessary arrangement at the first opportunity.

Series Preface Much of contemporary moral, political and legal discourse is conducted in terms of rights and increasingly in terms of human rights. Yet there is considerable disagreement about the nature of rights, their foundations and their practical implications and more concrete controversies as to the content, scope and force and particular rights. Consequently the discourse of rights calls for extensive analysis in its general meaning and significance, particularly in relation to the nature, location of content of the duties and responsibilities that correlate with rights. Equally important is the determination of the forms of argument that are appropriate to establish whether or not someone or some group has or has not a particular right, and what that might entail in practice. This series brings together essays that exhibit careful analysis of the concept of rights and detailed knowledge of specific rights and the variety of systems of rights articulation, interpretation, protection and enforcement. Volumes deal with general philosophical and practical issues about different sorts of rights, taking account of international human rights, regional rights conventions and regimes, and domestic bills of rights, as well as the moral and political literature concerning the articulation and implementation of rights. The volumes are intended to assist those engaged in scholarly research by making available the most important and enduring essays on particular topics. Essays are reproduced in full with the original pagination for ease of reference and citation. The editors are selected for their eminence in the study of law, politics and philosophy. Each volume represents the editor’s selection of the most seminal recent essays in English on an aspect of rights or on rights in a particular field. An introduction presents an overview of the issues in that particular area of rights together with comments on the background and significance of the selected essays. TOM CAMPBELL Series Editor Professorial Fellow, The Centre for Applied Philosophy and Public Ethics (CAPPE), Charles Sturt University, Canberra

Foreword The contributions to this volume convey the important idea that approaches to disability rights may be drawn on not only as a source of inspiration from the broader field of human rights, but also as a source of legal non-discrimination rights. This approach enables the relatively new field of disability rights to be situated within a broader set of obligations and rights. Professor Blanck draws together critical essays addressing a range of historical and contemporary issues, situated in various countries, central to the critical examination of disability rights.

Contrasting Models of Public Policy Addressing Disability Part I of the volume identifies the important contrast to be drawn between two possible public policy models of how issues of disability should be addressed. In the first (older) medical model, persons with a disability are treated as objects of policy. This has led to a set of economic, social and cultural supports being adopted in most countries that have been important, but tend to be paternalistic, and can end up constraining, rather than empowering, those with disabilities. Such an approach tends also to separate those with disabilities from those without. This initial approach has often been contrasted with a second alternative approach, presented in subsequent parts of the volume, that treats those with a disability as rights-bearing individuals, actors in their own right in the framing of public policy, empowering the individual rather than patronizing, and emphasizing the integration of those with disabilities into society and economy, rather than their separation. Is it possible to integrate the civil and disability rights (or broader human rights) perspective with an appropriate social perspective? And, if so, how?

The European Union Framework Directive Model The former approach is in the course of giving way to the second, and there is an increased pressure to adopt the latter approach in several EC member states. The latter approach is likely to be both underpinned and further advanced by the example of the EU Framework Directive on employment discrimination. The importance of the Directive for those with disabilities in the EU and other countries is both symbolic and instrumental, underpinning the new normative approach and establishing mechanisms to enable it to be implemented. The anti-discrimination approach on which the EU Framework Directive likewise has certain advantages, particularly in presenting disability issues as issues of rights and therefore ensuring that those who have previously been invisible are empowered to become more visible and exercise choices. Nevertheless, there are several inherent risks associated with reliance on the EU Directive model. Here, I will concentrate on two that are relevant to the contributions in this volume: first, that there will be pressure to adopt interpretations of the Directive simply to ensure a

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rather superficial consistency with the way in which the other grounds of discrimination, such as race, gender or age, are being interpreted; and, second, the danger that the Directive (or other policies like it) will come to be seen as not only a necessary tool of policy regarding disability, but also as a sufficient tool of policy. The first danger is one of false consistency. In many respects the Directive, as an example of other policies identified in this volume, is open to considerable interpretation, some of which may not be advantageous to those who are disabled. In particular, since the Directive includes not only disability as a ground of discrimination but also age, sexual orientation and religion, there will be pressures to adopt interpretations of concepts that are common to the legal regulation of all the grounds of discrimination (such as the meaning of direct and indirect discrimination, and the scope of remedies) that are seen to be consistent across these grounds. Just as importantly, there will be pressures to adopt interpretations that are consistent with existing gender discrimination jurisprudence and emerging race discrimination jurisprudence; and these pressures have been illustrated, for instance, by the American courts’ strained interpretation of the Americans with Disabilities Act (ADA). This pressure for consistency in legal interpretation is potentially problematic because, unless considerable care is taken, necessary differences in the way in which disability discrimination should be treated may be sacrificed to consistency. This problem is not, however, confined to the interpretation of concepts that are common to all the grounds. In some ways, it is even more of a problem in the context of the interpretation of issues that are sui generis. There are several sui generis aspects of the EU Framework Directive, also common to such initiatives in other contexts, that generate debate and dispute: (a) the definition of disability; (b) the extent of the positive obligation to ‘reasonably accommodate’; and (c) the relationship between the new obligations of the Directive and other existing legal requirements that pre­ date the Directive. As in America and the United Kingdom, the issue of ‘reasonable accommodation’, for example, is likely to be a key area of debate. It will involve the European Court of Justice and national courts confronting the issue of how far so-called ‘accommodation mandates’ are to be given a generous or restricted interpretation. If the courts take a restricted interpretation of this positive duty, it is likely to drive the interpretation of the Directive into being simply about choice, without ensuring that that choice can be effectively exercised in practice.

Different Meanings of Equality The general problem is that different grounds of discrimination appear to emphasize rather different meanings of equality. There are, essentially, four different (although overlapping) meanings currently attaching to the concept of equality as a policy goal: equality as individual justice; equality as group justice; equality as protecting and enhancing identity; and equality as participation. What may be suitable in one context, may not be in another. The Individual Justice Model The first conception of equality I call the ‘individual justice’ model. This model generally aims to secure the reduction of discrimination by eliminating from decisions considerations based

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on race, gender or other prohibited considerations that have harmful consequences for individuals. The key word is usually ‘discrimination’. This approach is not primarily concerned with the general effect of decisions on groups. It is markedly individualistic: concentrating on securing fairness for the individual. It is generally expressed in universal terms: blacks and whites are equally protected, for example, as are men as well as women, sexual minorities and sexual majorities. It reflects respect for efficiency, ‘merit’, and achievement. It preserves and possibly enhances the operation of the market. It often concentrates on the intention of the perpetrator of the discrimination, and the sense of grievance of the individual arising out of that intention. The Group Justice Model The second conception of equality is group justice. This is the view that the aim of equality policy should be to concentrate more on the outcomes of the decision-making process, not just the process itself. Supporters of this model often seek to redistribute resources from the advantaged to the disadvantaged. Their basic aim is to improve the relative position of particular groups, whether to redress past subordination and discrimination, or out of a concern for distributive justice. The key word is usually ‘redistribution’, rather than discrimination. It is here that other disability policies come closest to, and sometimes substantially overlap, poverty reduction and social inclusion policies, since these are essentially redistributive as well. This seems to be the conception of equality closest to the idea of ‘economic empowerment’. Equality as Recognition of Identity However, a third conception of equality, in which equality involves the recognition of diverse identities, also seems to underpin the disability rights policies such as the EU Directives. In this conception of equality, the failure to accord due importance to such differing identities is a form of oppression and an inequality in itself. Diversity becomes the key word in general debate. Discussions around sexual orientation are often framed in this way. Equality as Participation The fourth approach to equality is to view claims by minority groups as, in part, struggles to be able to articulate their own perspectives and priorities - a claim for political participation in the broadest sense. The aim is that all, including those previously excluded, should have a voice in public affairs, especially in the daily decisions of those who shape their life chances. ‘Participation’ becomes the key word. The provisions in the EU Directive regarding the need for social dialogue are good illustrations of this approach.

Coping with ‘Equalities’ Which of these models of equality is ‘correct’? My argument, and the seeming consensus in this volume, is that no one model can or should claim to represent the central or best case of equality in interpreting and explaining disability rights equality policy. All these conceptions

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of equality are necessary for us to capture its full dimensions and the richness of its meanings. We should embrace this diversity of equalities in disability rights policy-making and refuse to narrow equality discourse to only one meaning. Let me assume that disability rights policy should reflect all four conceptions of equality. Attempting to achieve all these equalities will clearly lead to profound debate about the priorities between these equalities when they clash, as they sometimes will. Evidence from the United States shows that there may, for example, be a tension between prohibiting age discrimination (a classic individual justice demand) and redistributive policies on race and gender discrimination. The principal beneficiaries of the American age discrimination legislation are, after all, older, white males. In the particular context of disability rights issues, an approach to the interpretation of the EU directives that regards the protection of identity as the dominant value would be highly damaging. Furthermore, disability rights policies should be seen as encompassing not only issues of individual (or corrective) justice, but also distributive justice. There are important implications resulting from this. As Professor Blanck contends in the context of the ADA, it is necessary not to overplay the ‘business case’ for equality as essentially cost reduction, otherwise there is a danger that courts will interpret the disability rights laws as driven by cost reduction. However, it is also necessary to refresh the social model of disability with the spirit embedded in policies such as the EU Framework Directive. Anti-discrimination Law as Necessary but not Sufficient A second potential danger in the disability anti-discrimination approach is that it may come to be seen not only as a necessary but also as a sufficient policy response. There is a danger that economic, social and cultural supports, for example, will be seen as having been replaced by the anti-discrimination approach. Such an outcome would be unfortunate, given that the disability anti-discrimination approach involves a limited set of positive obligations on government, service providers and employers. In the future it will be necessary to ensure that the ability to choose is accompanied by economic, social and cultural supports that enable those choices to become real, rather than theoretical. Mainstreaming How, then, are we to deal with these complexities? A European debate is now underway on whether the implications of the different conceptions of equality are to be adequately explored and resolved, and if the disability anti-discrimination approach is properly perceived as part of an appropriate raft of policy responses. Two problems have bedevilled these debates in the past. The first was the extent to which major areas of economic decision-making by government were untouched by these equality debates. Equality regarding minority groups was largely marginal to management of the economy. Without underestimating the extent to which courageous individuals and organizations operating on behalf of these groups have contributed to the development of the current legislation, we can point to another problem: the extent to which choices between these different conceptions of equality have been made on behalf of those who are most affected by the choices, rather

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than by older people, ethnic minorities, women and persons with disabilities on their own behalf. I agree that mainstreaming offers a potentially effective mechanism for addressing both these problems: it permits the inevitable choices and trade-offs between these conceptions of equality to be made with the full participation of all in the society, and also requires equality to pervade the economic areas of policy debate. What is necessary, then, is a recognition that different equalities are in play in different situations and that what is necessary is for the protected groups to be able to engage with policy-makers to help secure the adoption of the conception of equality that best suits their circumstances. We should not prejudge the outcome of that debate. What we need to recognize, therefore, is the importance of 4equalities’-talk, rather than 4equality’-talk. Thus, it will be vital for the debate about disability rights to take place not only between such groups and government, but also between these groups themselves.

The Role and Limits of Human Rights One of the problems with emphasizing dialogue and discussion, however, is that it sometimes appears to imply that everything is up for negotiation and that there are no standards that should inform that dialogue. As I have already mentioned, it is also vital, therefore, to situate the legal approach to disability discrimination, and the mainstreaming of disability issues in government, within a broader human rights approach. Human rights approaches should be drawn on not only as a source of inspiration, but also as a direct source of legal rights. This should enable disability policies like the EU Framework Directive to be seen as being situated within a broader set of obligations and rights. The EU Charter of Fundamental Rights provides a useful pointer in this direction. The interpretation of human rights that needs to be drawn on is one that encompasses the duties to respect, protect and fulfil human rights. The current interest in, and development of, socioeconomic rights generally, and the drafting of the UN disability treaty that encompasses this broader human rights approach, is one of considerable potential significance for the role and interpretation of disability rights policies. There are dangers with a human rights approach, however, if that approach is conceptualized as involving a narrow range of duties on the state or the limited conception of equality common in international human rights law, with its emphasis on state responsibility, the broad scope for justification permitted, and the requirement that non-discrimination is supplementary to other rights. In drawing on human rights we must be careful not to become trapped by too narrow a view of what this requires.

The Role of Comparative Jurisprudence As apparent from the contributions to this volume, to avoid a narrow view it may well be useful to draw on comparative jurisprudence. Drawing on what other jurisdictions have done in the judicial interpretation of equivalent instruments may free us from constantly having to reinvent the wheel, and particularly in helping us identify the issues that will need to be taken into

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account as we proceed to interpretation in the field of disability rights. That is not to say that comparative law cannot be problematic, in particular where the implications of what another jurisdiction has done are misunderstood or regarded as requiring any particular approach to be taken. But, on balance, if done appropriately, comparative jurisprudence will be of assistance.

Conclusion The role of international human rights will be vital in setting the ideals that we must aim for in the area of disability rights. Comparative jurisprudence of the sort presented in this volume also will be important in identifying many of the issues that we must confront in reaching that ideal. Although many nations now have embarked on an expedition that shares common features, there are important unique features to offer to other jurisdictions - in particular, in integrating equality into the market in a way that is both sustainable and effective, moving from rhetoric to reality in the field of disability rights. Christopher McCrudden Oxford University, 2005

Introduction Overview There is great diversity of definitions, causes, and consequences of discrimination against persons with disabilities. Yet, there are fundamental themes that unite countries in their pursuit of human rights policies to improve the social and economic status of persons with disabilities (Blanck, Hill, Siegel and Waterstone, 2003). This volume contains historical, contemporary, and comparative scholarship crucial to identifying individual, organizational, cultural, attitudinal and legal themes necessary for the advancement of disability rights. The pursuit of disability rights reflects a moral and political commitment by countries towards equal opportunity for persons with disabilities throughout the world in such areas as employment, housing, transportation, rehabilitation and individual human rights. This volume is meant to play a significant role in informing policy-makers and citizens of issues central to disability rights and disability anti-discrimination policies. Among the preconditions recognized by the UN for the equal participation in society of persons with disabilities is awareness and analysis of disability rights. Christopher McCrudden writes in the Foreword to this volume that such models of international human rights are ‘vital in setting the ideals that we must aim for in the area of disability rights’. Given the breadth of issues, there is little systematic analysis of disability rights policy formulation, implementation and evaluation. Policy-makers implementing anti-discrimination policies have the opportunity to examine the underpinnings and effects of this new generation of civil and human rights laws. This examination is necessary for ensuring the viability of disability rights. In any country implementing disability rights, fundamental questions must be examined from perspectives of people living with disabilities and their families. Will an increasingly diversified and ageing global workforce include millions of persons with disabilities? What types of assisting technologies and accommodations will enable persons with disabilities to live independently? And how will the changes that have occurred in disability, welfare, health care and transportation policy, among other areas, impact on the quality of life of persons with disabilities? Part I of this volume illustrates that, in many countries, addressing such issues has coincided with a historical shift in disability laws and policies - from a model of charity, to medical oversight, and then to civil rights (see Blanck and Millender, Chapter 1). Paul Longmore (Chapter 2) examines historical and contemporary bases embedded in the old medical model and the modem sociopolitical approach to disability rights. B J. Gleeson (Chapter 3) presents a historical ‘materialistic view’ of disability studies, implying that the disability rights movement is, in part, a reaction to social oppression. Gleeson builds on Mike Oliver’s seminal work (Chapter 4) setting out the political foundations of disability rights as grounded in a socialist social policy. Finally, Leonard Kriegel (Chapter 5) offers his personal and compelling ‘reflections on the cripple as negro’. The essays in Part II review the rights model which conceptualizes persons with disabilities as a minority group entitled to legal rights of equality that emerged from the struggles of African

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Americans, women and other oppressed groups. Theresia Degener (Chapter 6) articulates the rights model as insisting that government secure the equality of disabled persons by eliminating the legal, physical, economic and social barriers that preclude full involvement in society. Jerry Winter (Chapter 7) chronicles the development of disability rights as a social movement. Lisa Waddington (Chapter 8) describes Europe’s shift from employment quota policies to disability anti-discrimination law as reflective of a paradigm change in recognition of disability rights. Lee Ann Basser and Melinda Jones (Chapter 9) explain this paradigm shift to disability rights as reflected in Australia’s Disability Discrimination Act. The disability rights paradigm is subsequently discussed in Germany (Katharina Heyer, Chapter 10), Japan (Reiko Hayashi and Masako Okuhira, Chapter 11), and Latin America (Christian Courtis, Chapter 12). The essays in Part III contend that the primary way of evaluating whether disability rights are beneficial is through assessing information regarding their impact on the daily lives of persons with disabilities and their families, as reflected in the colloquy among Mike Oliver, Colin Barnes, Mike Bury and Tom Shakespeare (Chapters 13 to 16, respectively). Policy-makers gain a more complete perspective about disability rights when information is gathered using a range of approaches from a variety of sources, such as Harlan Hahn’s minority group perspective (Chapter 17) and Michael Stein’s economic perspective (Chapter 18). In Chapter 19, Peter Blanck and his colleagues contend that, in addition to providing breadth of information, assembling research from multiple disciplinary sources highlights perspectives and assumptions as well as ways of reconciling conflicting outcomes (as illustrated by Jerome Bickenbach and Jeremy Cooper in their review of individual needs-based approaches as compared to disability rights approaches (Chapter 20)). Part III foreshadows the need for the comparative study of disability rights to support economic opportunity and social participation for persons with disabilities worldwide. Finally, Part IV examines the future of disability rights as a vehicle for ensuring that those living with disabilities participate as equal citizens of the world. In Chapter 21, Tom Shakespeare and Nicholas Watson place this approach in a broader model of social change, and in Chapter 22 Adrienne Asch derives lessons from critical race and feminist theory. Marcia Rioux (Chapter 23) and Arlene Kanter (Chapter 24) expand disability rights to include a general model of equality that has global ramifications. Gerard Quinn concludes the volume (Chapter 25) with an appreciation for disability rights as one step towards fulfilling global initiatives that support participation by persons with disabilities as equal citizens of the world.

Stories about Disability Rights Before presenting the essays in this volume, it is important to provide a real-world context, albeit limited to my own experiences, about disability rights. I have been fortunate to meet individuals and families at the forefront of the disability rights movement. These individuals did not want to be parked in sheltered workshops; they wanted real jobs. They did not want to live on government handouts; they wanted pay cheques. They did not want to view the world as outsiders; they wanted to be participants.1 In their book, Rights of Inclusion: Law and Identity in the Life Stories of Americans with Disabilities, Engel and Munger comment that disability rights laws such as the ADA ‘presented an extraordinary opportunity to explore from the very outset what rights actually did and how

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they mattered, or did not matter, to their intended beneficiaries’ (Engel and Munger, 2003, p. ix). The following stories illustrate how disability rights matter, and in ways that parallel themes in subsequent parts of this volume relating to employment, inclusion and access to society. Don Perkl: Disability Stigma I met Don Perkl and his family in 1999 at the Madison packaging and assembly facility, a sheltered workshop, in Madison, Wisconsin. Don is in his early fifties and suffers from mental retardation. He does not speak, and we talked using pictures and a communication board, a device that translates ideas into spoken words. We discussed his employment, job training and the things he enjoyed. The US Equal Employment Opportunity Commission (EEOC) retained me to testify as an expert witness in a lawsuit that the government, Don and local disability advocates brought against a Chuck E. Cheese restaurant for employment discrimination under the ADA. Don had worked at Chuck E. Cheese as a janitor. His job performance was excellent and his co-workers enjoyed working with him. One day, a company regional manager visited the restaurant. On seeing Don working at the restaurant, he took the local store supervisor aside and criticized her for hiring one of ‘those people’ (EEOC, 2000). On a return visit to the restaurant, the regional manager fired Don after the local supervisor refused to do so. The local supervisor testified during the trial that she then sought guidance from the company’s corporate human resources department, asking, ‘Can someone please help me with this situation, so we can at least give this guy a chance? We are an equal opportunity employer, are we not?’ (EEOC, 2000). The request for guidance was unsuccessful, and the local supervisor and other restaurant staff quit in protest. At the trial, the defendant argued that Don was not qualified for the job and that the company did not discriminate against him. They defended their actions by claiming there was something threatening about Don, possibly to the children and patrons at the restaurant. The company retained a local psychiatrist to support these claims. Of course, this was nonsense and misguided prejudice. As an expert qualified by the court,2 I testified about the myths and stigma facing people like Don in employment and other daily life activities. Contrary to the company’s assertions, Don was a qualified and dedicated worker, who had good interactions with his co­ workers and customers. While there was nothing deficient about Don’s work performance, there was something wrong about management’s culture and attitudes - at least in this case. At the close of the trial, the case was sent to the jury who, after a four-hour deliberation, found that Chuck E. Cheese had discriminated against Don in violation of the ADA. The jury awarded Don US$70000 in back pay and compensatory damages as well as his legal fees (EEOC, 2000). To make their point, the jury sent a message that discrimination against qualified employees based on their disability would not be tolerated. They awarded Don US$13 million in punitive damages which was, at that time, the largest monetary award from a jury in an ADA case brought by the EEOC. The award was made despite Chuck E. Cheese’s position that Don’s mental retardation made it ‘highly unlikely’ that he would experience any emotional distress because of his termination (Chrzanowski, 2000). Chuck E. Cheese appealed the jury award, but the trial court imposed the maximum amount of damages allowed under the ADA (42 USC §§ 1981a(a)(l), (b)(3)(D) (2000); Blanck et al., 2003),3 stating that ‘the breathtaking magnitude of an eight-figure punitive damages award demonstrates that the jury wanted to send a loud, clear message’ (EEOC, 2000).

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Daniel Schwartz: Definition of Disability In early 2000 Daniel, his lawyer, Claudia Center (a leading disability public interest advocate), and I met to review his claims of disability discrimination and failure to accommodate under California’s Fair Employment and Housing Act (FEHA) (Brief for Appellant, Schwartz, 2003; Fair Employment and Housing Act, 1991 & 2003 Supp.). The FEHA offers many of the same disability anti-discrimination protections as, and in some ways exceeds, the ADA. Daniel was bom with congenital hypothyroidism, and his resulting developmental disability limits life activities such as learning and performing manual tasks. He is married to a woman with serious health conditions, and they live independently in their own apartment on their modest incomes (Brief for Appellant, Schwartz, 2003). Daniel had worked for more than 20 years as a mailroom clerk with a large bank in Los Angeles. Periodically, he had requested additional supervision, repeated instructions and training as workplace accommodations for his developmental disabilities. He received positive performance evaluations and pay increases each year. In the late 1990s the bank subcontracted its mailroom functions to an outside firm. The new firm transferred Daniel, along with the mailroom functions, to an offsite location. In his lawsuit Daniel contended that, although the new managers knew of his disability and need for accommodations, he faced a hostile work environment, with unsupportive supervisors and incomplete accommodations and training. Daniel’s goal was to succeed, obtain accommodations and keep doing his job. On one occasion, Daniel tried to take written notes about how to run a mail-sorting machine. But his job trainer asked him to stop because he could not write quickly enough. The trainer then wrote the notes for Daniel ‘as a favor’ (Brief for Appellant, Schwartz, 2003, p. 13). Daniel’s team leader subsequently confiscated the notes, believing this was somehow an ‘unfair advantage’ to Daniel. Daniel’s attorney, Ms Center, commented: ‘[the firm] never explained how an employee with a developmental disability could have an “unfair advantage” as a result of possessing written notes that described his job tasks’ (ibid.). After 20 years working for the bank and less than three months with the new firm, Daniel was fired. The reason given? Daniel, in the position of the mailroom clerk, had low performance ratings in interpersonal ability, communication, leadership and job skills and in his ability to be a ‘visionary’ and ‘motivate and inspire others’ (ibid., p. 14). It was not apparent how being a visionary or having a global mindset had relevance to job-relatedness under the ADA to Daniel’s mailroom clerk position. Shortly after he was fired, while job hunting, Daniel read an advertisement announcing numerous vacancies for jobs that he had done. After our initial meeting, I travelled to north Los Angeles to interview Daniel in his new place of employment. He worked in a small office as a clerk, sorting mail and performing other tasks. Daniel’s employer thought that he was doing a good job. He was working part-time, and as yet had no health insurance benefits. He was hoping to find full-time employment to help pay his high health care costs. As in Don Perkl’s case, I testified as an expert on the stigma and discrimination facing Daniel. I discussed Daniel’s job skills and the discrimination that he faced throughout his life. I reviewed Daniel’s work history, describing a man who had worked his whole adult life and who was proud to be a taxpayer. I concluded that Daniel was capable of doing the mailroom job. With the close of discovery and summary judgment motions filed, the case came before a Los Angeles federal district court judge. Surprisingly, the judge rendered his opinion from the

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bench, not seeing fit to reach the merits of the case. The judge ruled that because Daniel had worked for years and successfully so, he could not be ‘disabled’ for purposes of the law and therefore did not need accommodation. Daniel worked for 20 years (Brief for Appellant, Schwartz, 2003, p. 1), and the December 2000 summary judgment hearing lasted less than two minutes and Daniel’s case was dismissed. Daniel took his case to the US Court of Appeals for the Ninth Circuit. Before a decision was reached, Daniel accepted a settlement of more than US$100 000, along with his legal fees. Justice for Daniel? Perhaps. Yet, this company, like Chuck E. Cheese, could have avoided virtually all these costs by taking a modest amount of time to understand the perspective of a qualified employee with disabilities. Mario Echazabal: Paternalism and ‘Direct Threat’ I first met Mario Echazabal in the marble halls of the US Supreme Court during its 2002 term, waiting for the oral argument in his case to be called. I was counsel for the National Council on Disability in Mario’s case. Along with colleagues and a local law firm, I had prepared and filed an amicus brief in Chevron USA, Inc. v. Echazabal (2002).4 In the case, Chevron would not hire Mario, a job applicant, because he had asymptomatic hepatitis C. The company refused to hire him not because he was unqualified for the position he sought in their refinery but, rather, because they believed its workplace might worsen his condition - an opinion subsequently disputed by Mario’s doctors (Chevron, 2002). Working for an independent contractor, Mario successfully performed the essential job functions in Chevron’s refinery for some 20 years without accident or injury to himself or anyone else. He was competent to make informed decisions about his employment and medical treatment. Chevron was aware of his health status during these years as a result of repeated medical evaluations submitted to Chevron’s clinic physicians while he worked at their refinery (Chevron, 2002). Mario Echazabal personified the situation that the ADA was intended to prevent: paternalism that results in exclusion and isolation. Mario believed that he was entitled to decide for himself, within reason, where he worked. Indeed, assessing and accepting risks within reason are basic elements of personal independence and the exercise of adult responsibility. Congress understood this, and acknowledged in the ADA that discrimination takes many forms, including paternalism. Although ADA Title I includes a direct threat defence, this defence is defined by Congress as a requirement that an individual ‘not pose a direct threat’ only ‘to the health or safety of other individuals in the workplace’ (42 USC § 12113(b) (2000)). There is no mention in the statute of a threat-to-self as a defence to a charge of employment discrimination. As we argued in our brief, one of the insidious aspects of paternalistic discrimination is the assumption that people with disabilities are not competent to make informed or safe life choices (National Council on Disability, 2003). Mario’s case stemmed from regulations issued by the EEOC subsequent to the ADA’s passage that permitted employers to refuse to hire a person with a disability if the employer believed the individual poses a direct threat to her own health or safety ( 1992; Ballard, 1994) for examples of commentators seriously engaging social theory and philosophy; most references to epistemology in these diverse works are either allusive or tokenistic [5]. A pathology of the atheoretical cast of disability studies is the tendency of commentators to mire themselves in a definitional bog. The seemingly endless iterations of definitional orthodoxies concerning the meaning of terms such as ‘disability’, ‘impairment’ and ‘handicap’ are a problematic feature of the discourse (Oliver, 1990). The inability of observers to agree on the basic terms of the debate

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182 B. J. Gleeson is in fact the discourse’s incapacity to comprehend the nature-culture relation, which in turn stems from the absence of strong social theory. Without recourse to the established debates on the nature-culture relation, disability studies are condemned to a Sisyphean exercise of moving from one unsatisfactory definition to another. It will later be argued that historical materialism offers one epistemological solution to this definitional conundrum. Theoretical superficiality has encouraged a further linguistic diversion in dis­ ability debates. This concerns the regular announcements that currently-favoured collective and individual terms for disabled people have become outmoded and in need of immediate replacement by ‘less dehumanising’ alternatives. Whilst not denying the political importance of the process of naming social groups, it must be stated that this endless tendency to reinvent titles for disabled people is characteristic of a vacuous humanism which seeks to emphasise a ‘human commonality’ over the material reality of oppression. Typical of this is the insistence by many commen­ tators on terms which primordially stress the humanity of disabled people—e.g. ‘people with disabilities’. This paper follows Abberley (1991a,b) in rejecting the now popular notion that ‘people with disabilities’ is a humanising improvement on the term ‘disabled people’ (the same may be said for the singular form). Abberley (1991a,b) declares this to be a retrograde terminological change which effectively depoliticises the social discrimination that disabled people are subjected to. He is not prepared to accept the displacement of the adjective ‘disabled’ until disabled people are actually permitted to experience social life in fully human ways. The wider consequences of the theoretical unconsciousness of disability studies are manifold and cannot be fully essayed here. However, this discussion cannot neglect to mention the critical dynamics of gender and race which remain largely beyond the ken of disability studies. Some movement towards consideration of these other potential oppressions—and the multiple subjectivity of disabled people— seems to have emerged in recent years [6]. This has doubtless been inspired by the political experiences of practitioners, advocates, and, more importantly, disabled people themselves. The growing awareness in Western countries of social move­ ments based upon coalitions of the marginalised, has no doubt encouraged an increasingly broad view of oppression amongst disability commentators (cf. Abberley, 1991a; Young, 1990). Hahn (1989) has made some particularly thoughtful surveys of the common political ground which might potentially link, if not unite, minority social move­ ments. Abberley has also emphasised the link between disability and other forms of social oppression, remarking that: This abnormality is something we share with women, black, elderly, gay and lesbian people, in fact the majority of the population (1991a, p. 15). In addition, a feminist perspective which explores the ‘double handicap’ of gender and disability has begun to emerge both in Australia (e.g. Orr, 1984; Cass et al.> 1988; Meekosha, 1989; Cooper, 1990; Williams and Thorpe, 1992) and overseas (e.g. Deegan & Brooks, 1985; Lonsdale, 1990). Nonetheless, it must be concluded that disability studies still exists in a state of

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theoretical underdevelopment. There is much to be done in terms of applying the insights of social theory and philosophy to the issue of disability. Barnes’ (1995) recent caution against inaccessible terminology (particularly of the post-modern ilk) and theoretical opacity in disability studies is well advised. However, the issue of discursive clarity and accessibility must not be confused with the need for theoretical substance in analyses of disability. Disability is a social phenomenon and must therefore be explained through recourse to theories of society (cf. Oliver, 1990). Idealism

Where social theory has been consulted in disability studies, the analyses have frequently emphasised the non-material dynamics (e.g. attitudes, aesthetics) that supposedly characterise the human experience of impairment. Much of the social theoretical work on disability has been sourced in philosophical idealism, an epistemology which presumes the human environment to be the product of ideas and attitudes (Gleeson, 1995). Abberley (1991a), for example, identifies certain forms of individual and social psychological perspectives as evidence of idealist explanations of disablement. Hevey also declaims against idealist explanations of disability where the material world (for disabled people, the material world of physical inaccessibility) is taken as given and fixed and is an artefact of the world of attitudes and ideas (1992, p. 14). Individual psychology approaches are evident in many studies of disability and tend to explain disability as a ‘personal tragedy’ which ‘sufferers’ must adjust to, or cope with (Oliver, 1990). The historical genesis of this approach may be traced to the early 1960s when, for example, Wright (1960, p. 1) was able to observe approvingly that the study of adjustment to disability is ... beginning to be regarded as a serious area of investigation by more than a few ... psychologists (emphasis added). Both Oliver (1986, 1990) and Abberley (1991a) have exposed the inadequacy of this ‘personal tragedy’ mystification which is central to the individual psychology perspective. Social psychology, on the other hand, has inspired a formidable idealism in disability studies and deserves some critical appraisal. For commentators who subscribe to a social psychology view, disability is viewed as an ideological construct rooted in the negative attitudes of society towards impaired bodies (Abberley, 1991a; Fine & Asch, 1988). Whilst ‘social forces’ are acknowledged as constitutive dynamics, their material contents are overlooked in favour of psychological or discursive structures (Meyerson, 1988). The most notor­ ious example of social psychology is the explanation of disability advanced by the interactionist perspective, whose chief evangelist was Goffman (e.g. 1964, 1969). For Goffman, an individual’s ‘personality’ is said to arise from social inter­ action—as an iterative process between actors—where attitudes are formed on the basis of the perceived attributes (positive and negative) of others Gary & Jary, 1991).

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184 B. J. Gleeson In this view, disability is understood as a ‘stigma5—a negative social attribute or sign—which emerges from the ritualistic interaction of actors in society. Thus, interactionists, like Goffman, were able to posit the reality of a ‘disabled personality moulded by an infinity of stigmatising encounters5 (Abberley, 1991a, p. 11, emphasis added). Abberley (1991a) rightly dismisses this view for its idealism, evidenced both by its inability to offer any satisfactory explanation of belief forma­ tion (interactionism merely describes this), and the lack of appreciation of the materiality of social practices (such as ‘interaction5). The interactionist fallacy of explaining disability as the product of aesthetic and perceptional dynamics continues to find favour in disability studies. Warren (1980, p. 80) exemplifies this tendency with his remark that handicap should not be ‘objectified5, not be made a ‘thing out there in the world5, but rather be seen as a matter of interpretation. Similarly, Deegan & Brooks (1985, p. 5) suggest that the social restrictions of disability are enforced by ‘a handicapped symbolic and mythic world5. The political implications of dematerialising the explanation of disability are clear. The view of disability as an attitudinal structure and/or aesthetic construct avoids the issue of how these ideological realities are formed. Idealist prescriptions are consequently reduced either to the ineffectual realm of ‘attitude changing5 policies or the oppressive suggestion that disabled people should conform to aesthetic and behavioural ‘norms5 in order to qualify for social approbation. This last point invites consideration of a further tendency within disability studies. At issue is the service principle of ‘normalisation5, more latterly known amongst some of its adherents as ‘social role valorisation5 (Wolfensberger, 1983, 1995). Normalisation

The principle of social role valorisation, which began life with the revealing epithet, ‘normalisation5, was described by Wolfensberger & Thomas (1983, p. 23) as ‘the use of culturally valued means in order to enable, establish and/or maintain valued social roles for people5. As the original title suggests, this service philosophy—which has been taken up with great vigour in much of the Western world since the 1970s [7]—has the normalisation of socially-devalued (or ‘devalorised5) people as its object [8]. The appeal to extant ‘culturally valued means5to improve the social position of groups such as disabled people effectively forecloses on the possibility of their challenging both the established norms of society and the embedded material conditions which generated them. ‘Normality5, as the set of ‘culturally valued social roles5 is both naturalised and reified by this principle. Abberley (1991a, p. 15), speaking as a disabled person, admonishes ‘normalis­ ing5 philosophies and service practices for failing to locate ‘abnormality ... in the society which fails to meet our needs5. These perspectives assume, instead, that abnormality resides with the disabled subject. Abberley5s (1991a) rebuke emphasises

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the materialist view, already considered in this discussion, that humans are charac­ terised by varying sets of needs which cannot be described through references to ‘norms’. As he sees it, disabled people, amongst other social groups, are oppressed by societies which fail to meet their basic human requirements, most notably the desire for inclusion in social relations. Abberley (1991a, p. 21) argues that disabled people do not desire the current social standard of ‘normality’, but rather seek a ‘fuller participation in social life’. For many disabled people (especially historical materialists like Abberley), the predominant bourgeois mode of social life is neither ‘normal’, nor one to which they aspire [see also Abberley (1993) on this]. This is to echo Young’s (1990) influential critique of normative political theories which have effaced the critical fact of human social difference by presupposing abstract, homogenized notions of human subjec­ tivity. History and Disability

The Absence of History in Disability Studies

Disability studies are largely an ahistorical field of enquiry (Scheer & Groce, 1988). Given the criticisms outlined above, this finding may not be surprising. Disability studies have remained nearly silent on the issue of history; a situation encouraged by the failure of most of its participants to engage established social theory. On this Abberley (1987, p. 5) offers disability analysts the following well-earned iconoclasms: ... the sociology of disability is both theoretically backward and a hindrance rather than a help to disabled people. Furthermore: Another aspect of ‘good sociology’ ... generally absent is any significant recognition of the historical specificity of the experience of disability (Abberley, 1987, p. 6). In an earlier article, Abberley is more specific about the historical unconsciousness of disability studies: A key defect of most accounts of handicap is their blind disregard for the accretions of history. Insofar as such elements do enter into accounts of handicap, they generally consist of a ragbag of examples from Leviticus via Richard III to Frankenstein, all serving to indicate the supposed perennial, ‘natural’ character of discrimination against the handicapped. Such chistories9serve paradoxically to produce an understanding of handicap which is . . . an ahistorical one. (Abberley, 1985, p. 9, emphasis added.)

As Abberley is aware, disability studies have not entirely erased history; they have, however, trivialised the past to the point where it is little more than a reification of the present.

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186 B. J. Gleeson Before reviewing the limited attempts to produce histories in disability studies, it is advisable to first mention the wider problem which has contributed to this failing. cThe Creatures Time Forgot3 [9]

The social sciences—in particular, history—must themselves accept responsibility for the indifference to the past in disability studies. This has been recognised by several disability commentators, including Haj (1970), Oliver (1990), and McCagg & Siegelbaum (1989) [10]. The former is notable for his early recognition of the disabled body’s absence in the historical discourse. For Haj (1970, p. 13), disability represented ‘a vast uncharted area ... o f... history’. His comment was to go unheard and 20 years later Oliver (1990, p. xi) felt compelled to claim that ‘[o]n the experience of disability, history is largely silent’. Only one historian (Riley, 1987) seems to have acknowledged that the issue of impairment in past societies has been largely ignored. The few attempts made at considering the historical dimensions of disability hardly amount to an adequate treatment of the issue. The early study by Watson (1930), whilst interesting for its empirical content, is both atheoretical and con­ descending towards its pathologised subject. In it ‘the cripple’ is portrayed as a transhistorical problematic which different cultures have had to deal with (‘the cripple’ and ‘civilisation’ are revealingly juxtaposed in the book’s title). The only other notable history of disability—Haj’s (1970) study of Disability in Antiquity —is much less patronising towards its subject. Haj (1970) carefully circum­ scribed his interesting study by concentrating on disability in Islamic Antiquity. Whilst Haj’s (1970) historical and cultural purview is much more limited than Watson’s (1930), his analysis is far richer in theoretical terms. However, like Watson’s (1930) chronicle, Haj’s (1970) investigation never seems to have come to the attention of disability studies. Two Approaches to History in Disability Studies

Temporality has been ignored or trivialised by disability commentators in a range of specific ways. Generally, however, two broad types of historiography are evident within disability studies. The first strategy is by far the most common and is characterised by the type of apriorism and speculation that Abberley (1985) refers to. The usual form is for a commentator to present a few paragraphs on the ‘history of disability’ (usually restricted to Western societies, though the ambitious are not usually so restrained) by way of prefatory remark to a more contemporaneous study. Examples of the ‘microscopic history’ approach are almost limitless—see, for example, Safilios-Rothschild (1970), the essays in the Laura (1980) collection, Topliss, (1982), Harrison (1987), Lonsdale (1990), and Smith & Smith (1991). The chief defects of these historical sketches include brevity, lack of empirical substantiation, theoretical underdevelopment and reification (through idealist ten­ dencies). Whilst there is neither time nor need to explore all of these deficiencies in detail, it is worth pausing to consider certain of the consequences that these studies

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have had for the historical consciousness of disability enquiry. Importantly, the limited historiography of disability studies seems to have burdened the field with a number of assumed orthodoxies about the social context of impairment in previous societies. The first orthodoxy is the belief that the predominance of a ‘Judeo-Christian ethic’ in past European (particularly pre-modem) societies was directly responsible for the historical oppression of impaired people. Smith & Smith (1991, p. 41) evidence the continuing currency of this view by pointing to the Judeo-Christian ethic of associating physical defects with sin. Since people are supposedly created in the image of God, anything which fails to fit that image is deemed imperfect—that is, not Godly—and hence evil. According to this judgement, people with physical disabilities, through their obvious blemishes, are wanting and epitomised as bad ... Two objections may immediately be raised to this orthodoxy. First, it is not at all clear that disabled people were subject to universal social or religious antipathy in pre-modem societies. This is an a priori speculation which ignores the complexity of how discursive religious and ethical mores were socially concretised for disabled persons. The fallacy of reading historical material reality directly from ideological/ religious texts or aesthetical records of the past is a failing of idealist approaches in general. Secondly, this conjecture is a case of methodological delendum subjectum, relying on a simplism—in this instance the ‘Judeo-Christian ethic’—to justify the absence of complicating historical realities. The history of Judeo-Christian thought and practice can hardly be explained through appeal to a single ‘ethic’. Christianity had a much more complex presence in European society than such a construction would allow, with its teachings subject to localised interpretations, and even rejections, in varying periods. Even theologically, Judeo-Christian thought was hardly a cohesive ‘ethic’, being characterised by discrepancies of interpretation at many levels; the constant dis­ agreements over the spiritual significance of materialities being one example of these. There were certainly many lines of religious thought on the question of disability. The influential philosophy of Spinoza (1632-1677), for example, opposed negative constructions of disability. For Spinoza: A physical... cripple is such because of its place in the system: God has not tried to produce perfection and failed (Urmson & Ree, 1989, p. 305). In addition, in the realm of everyday life, feudal peoples may have welcomed the presence of disabled mendicants, as Braudel (1981, p. 508) explains: In the old days, the beggar who knocked at the rich man’s door was regarded as a messenger from God, and might even be Christ in disguise. Though subject to a variety of interpretations (e.g. Bovi, 1971; Foote, 1971), the inclusion of various groups of lame beggars in the works of Bruegel (1520P-1569) (see especially The Fight Between Carnival and Lent and The Cripples) would seem to

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188 B. J. Gleeson signify that those with physical ‘maladies’ had a valued place within the pre-modem social order. The other reification of the schematic approach to history is the view that all impaired people were beggars in the pre-industrial era. This orthodoxy is explained by Safilios-Rothschild (1970): the disabled have always been ‘problematical’ for all societies throughout history, since they could not usually perform their social responsibilities satisfactorily and became dependent upon the productive ablebodied. (Emphasis added.) Hahn (1988, p. 29) is also convinced that disabled people in the pre-modern world were doomed to become either beggars or minstrels who wandered through the countryside until they became the first group to receive outdoor relief under the English Poor Law of 1601 and subsequent legislation. Elsewhere he repeats this view in even more strongly fatalistic terms: To the extent that disabled persons had any legitimized role in an inhos­ pitable environment prior to the advent of industrialization, they were beggars rather than competitive members of the labor force. (Hahn, 1987, p. 5.) Consequently: Unlike most disadvantaged groups, disabled adults never have been a significant threat to the jobs of nondisabled workers (Hahn, 1987:5). Williams & Thorpe (1992), although not writing within the disability studies discourse specifically, testify to the resilience of the disabled-as-beggars approach in Australia. They quote Cass et al. (1988) in the following: In Australia, people with disabilities were regarded in the nineteenth century as part of the ‘deserving poor’ and, as such were ‘appropriate objects for pity, protection and charity’. (Williams & Thorpe, 1992, p. 110.) The effect of this view is to silence history, projecting disabled people’s relatively recent experience of service dependency and marginalisation through the entirety of past social formations. This assumption must be rejected on two grounds. First, it is based on a limited reading of extant textual and visual records of disability and makes no attempt to capture the concrete experience of impaired persons in historical societies (Scheer & Groce, 1988). Thus, the view of all disabled persons as beggars is based upon an ontological and methodological selectivity which must inevitably run the danger of reification. Second, this construction of disability in history has odious political implications by encouraging the identification of impair­ ment with social dependency. The second approach to history in disability studies is relatively recent in origin. It contrasts with the first, being characterised by a greater depth of analysis, the

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consultation of documentary evidence (to varying degrees), and reference to major historical and social theories. This analysis will review two examples of this [11]: first, the chronicle produced by Stone (1984) which has received considerable attention; and second, the historical materialist accounts offered by Finkelstein (1980), Oliver (1986, 1990), and Abberley (1985, 1987, 1991a,b). As its title— The Disabled State—indicates, Stone’s (1984) history is predicated upon a statist approach [12]. In this she posits the historical existence of dual ‘distributive systems’ in societies: one involving the activities of those producing sufficient value to meet their own needs and more; and the other, a sort of social circuit of dependency which includes those who cannot maintain self-sufficiency. From this dualism a basic ‘redistributive dilemma’ is held to arise, presenting an enduring socio-political problem for states. The tension between the two systems based on work and need is the fundamental distributive dilemma (Stone, 1984, p. 17, emphasis added.) For her, disability is explained as a juridical and administrative construct of state policy which is aimed at resolving this supposed redistributive predicament. Many objections must be raised to Stone’s (1984) chronicle. However, a full exegesis of these cannot be entertained here, and the following analysis will be limited to two general criticisms. First, the historiography of the account is both selective and ambiguous. The chief defect is the projection of the ‘redistributive dilemma’ construct seemingly through all history; an epistemological presumption which has little empirical substance. This ‘distributive dilemma’ is, for example, of doubtful relevance to the explanation of primitive societies where a dichotomy between ‘producers’ and dependants was neither obvious, nor culturally-enshrined. In reality, Stone (1984) is referring to a far more recent episode of human history where social formations have been characterised by remuneration systems which assume a direct reciprocity between individual work and individual reward. That Stone (1984, p. 15) really has these social formations in mind is evidenced by her claim that ‘societies’ face the problem of how to help people in need without undermining the basic principle of distribution according to work. (Emphasis added.) The reciprocity between work and reward for individuals which is assumed here is not a ‘basic principle’ in primitive societies. Mandel (1968, p. 31) provides clarification on the primitive organisation of labour: Differences in individual productive skill are not reflected in distribution. Skill as such does not confer a right to the product of individual work, and the same applies to diligent work. The co-operative character of the primitive labour process favours a communal, rather than individual, distribution of the social product [13]. The anthropologists, Dettwyler (1991) and Scheer & Groce (1988), doubt that any ‘distributive dilemma’ can easily be identified in any past society, let alone in

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190 B. J. Gleeson primitive social forms. Dettwyler (1991) sees the social category of dependency as exceedingly fluid, and warns against the tendency to reduce it to physical impair­ ment: In reality, every population has members who are, for varying lengths of time, nonproductive and nonself-supporting. (1991, p. 379.) Dettwyler believes that as with children, disabled people in most societies participate as much as they can in those activities that they are capable of performing. (1991, p. 380.) Thus, [e]very society, regardless of its subsistence base, has necessary jobs that can be done by people with disabilities (Dettwyler, 1991, p. 380.) The consequence of this view is that [i]t is presumptuous of anthropologists to assume that they can accurately assess how productive disabled individuals might have been in the past. (Dettwyler, 1991, p. 381.) One would expect the accuracy of such analysis to be rather better for societies in the more recent past; Dettwyler is probably thinking of primitive society when making this remark. However, the comment serves as a general caution against the historicist tendency to cast impaired people as the objects of a ‘distributive dilemma5 throughout human history. By historically universalising the qualities of certain modes of production. Stone (1984) is encouraged to adopt confusing generalisations, such as seemingly equating ‘peasant5 societies (a vague term in her analysis) with subsistence forms of pro­ duction. A subsistence community is characterised by the absence (or extreme limitation) of productive surplus and most commonly refers to simple societies such as tribes or hunter-gatherer groups (Jary & Jary, 1991). Peasant societies, by contrast, embody a different form of social development, usually organised around an agrarian economy, and where surpluses may be both common and significant. Consequently, Stone's (1984) analysis must be seen as applying only to relatively recent Western modes of production—viz. feudalism and capitalism—in spite of the wider historical ambit it assumes. The second objection to Stone's (1984) account is that it avoids or trivialises the primal motive force of distribution—the social relations of production. The statist approach emphasises disability as a juridical and administrative construct, thereby subjecting it to conceptual de-materialisation. This approach can only reveal the meaning of disability to the state; it cannot adequately claim to capture the concrete reality of impairment in social relations generally. The actual lived experi­ ence of impairment in the past can only be sensed through materialist analyses of the organisation of production and reproduction [14]. Insofar as Stone (1984) has produced a record of public policy approaches to disability in relatively recent Western history, the project may be seen as a qualified

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success. The analysis cannot, however, claim to be an historical explanation of disability as a concrete social experience. The primary motive force in the social construction of disability must be the material organisation of production and reproduction. Disability, as a policy response of states to the contradictions of exploitative modes of production, is itself a material force in social relations. However, state policy and practice cannot be taken as an accurate empirical record of how disabled people lived in previous societies. The juridical record, in particular, cannot divulge the historical lived experience of disabled people, however much the law may have helped to shape the social context of impairment [15]. The great danger of chronicles such as Stone’s (1984) is that they (unwittingly?) encourage belief in a ‘beggared’ history of disability. The tendency is to reduce the concrete lived experience of impairment to the more limited domain of disability as state social policy. This must both obfuscate the material genesis of disability and reify the entrenched policy construction of impaired persons as ineluctably depen­ dent upon social support. The history of disabled people, with its potential material complexity, is reduced thus to a saga of vagabondage and marginality. Paradoxically, as Abberley (1985) has recognised, this view is effectively an ahistorical one. So far this analysis has reviewed two types of approach to the history of disability: the first, the idealist, ‘microscopic’ chronicles evident in policy-orientated literature; and the second, the more sophisticated, statist approach of Stone (1984). Against these, theorists such as Finkelstein (1980), Leonard (1984), Oliver (1986, 1990), and Abberley (1985, 1987, 1991a,b) have proposed a historical materialist explanation of disability. Although none of these authors has offered a comprehen­ sive materialist chronicle of disability (Oliver comes closest with a useful historical chapter in his 1990 study), their analyses have clearly established the need for such an endeavour. In addition, the works of Oliver (1986, 1990) and Abberley (1985, 1987) represent, together, an important step towards defining the elements of a materialist history of disability. At one point Oliver (1990) voices an ambivalence towards historical material­ ism, but he is clearly guided by this mode of analysis in his speculations about past treatments of impaired persons. Though sometimes given over to pluralism, and idealism [16], the work of Hahn (1986, 1987, 1988, 1989) is also inclined towards a materialist interpretation of Western history. Finkelstein (1980), whose early comments on the history of disablement provided an important spur to the interest of Oliver and Abberley in this question, may also be counted as a ‘fellow-traveller’ of materialism. However, the rather enigmatic character of Finkelstein’s (1980) historiography is a serious point of difference. Though yet to produce much in the way of historical empirical substance, this materialist approach in disability studies is important for the conceptual break it asserts with other forms of explanation. Of critical importance is the assertion by these materialist analysts that disability is both a socially- and historically-relative social relation that is conditioned by political-economic dynamics. Thus, Oliver (1990) is able to argue that the concrete experience of, and attitude towards, impairment has differed between modes of production. Feudal society, for example,

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192 B. J. Gleeson 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. (Oliver, 1990, p. 27.) Oliver (1990) is clearly against the ‘beggared’ view of impairment in history. The feudal situation is one that Oliver (1990) and the other materialists contrast with the experience of disablement in capitalist social formations. For these commentators, disability is viewed as a historically- and socially-specific outcome of social development. Consequently, they are at pains to point out that impairment hasn’t always been equated with dependency, and that material change may liberate disabled people from contemporary forms of oppression. Outline for a Historical Materialist Account

From Critique to Theory

A historical materialist evaluation of disability studies has been presented. The assessment is that recent theories of disability are in the main seriously deficient in the critical areas of epistemology and historiography (though some important exceptions were identified). In particular, four specific areas of theoretical weakness were identified. The criticisms were: the detachment from major social theory; idealism; the fixation with normality; and historical unconsciousness. These deficiencies have prevented the field of disability studies from realising its potential to challenge the structures which oppress impaired people. The epistemological superficiality of many disability accounts was pointed to. However, the analysis also highlighted the failure of the broader social sciences to consider the question of disability. This can be attributed to the neglect of the body in general within social theory historically. The tradition of historical materialist thought stands similarly condemned, having failed in the past to acknowledge the material importance of both the body and disability in social relations (Gleeson, 1993). The policy orientation of disability studies was seen as both a strength and weakness of the field. Whilst the policy focus may explain the theoretical shallowness of certain explanations of disability, it also demonstrates a concern for praxis so often lacking in other areas of social science. Disabled writers have contributed powerful accounts of the concrete experience of the oppression of disablement. A historical materialist approach would seek to cultivate this evident strength of the field, thereby foreclosing on any tendency to subject disability to abstract contem­ plation. Materialising Disability

The historical materialist view of disability is a recent development. In the past, Marxian theory and practice has ignored or trivialised most social oppressions that

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weren’t dependent upon class; critical social dynamics like gender, race and dis­ ability were simply ignored or marginalised as theoretical ‘specialisms’ (Vogel, 1983). In fact, Marx made some interesting allusions to disability, in the form of comments on the surplus labour force (the ‘industrial reserve army’) and the ‘crippling’ effects of industrialism (Marx, 1976) [17]. These remarks, however, were ignored by subsequent Marxist scholars and activists and it must be acknowledged that the issue of disablement has been largely neglected in the socialist tradition [the work of Mandel (1968) is a rare exception]. In recent years some members of the British Disability Studies community have been exploring historical materialism as a social theory which might illuminate the genesis and reproduction of disablement in Western societies [see, for example, the work of Abberley (1987, 1991a,b), Finkelstein (1980) and Oliver (1986, 1990)]. Leonard’s (1984) attempt to theorise identity formation amongst those social groups marginalised by the capitalist economy, including the unemployed and disabled people, was an important early step in the development of a materialist understand­ ing of disability (Oliver, 1990). Leonard’s (1984) explanation of the ‘disabled identity’ drew upon the inchoate sociological accounts of disability commentators, such as Finkelstein (1980) and Campling (1981). These early critical instincts in disability studies encouraged Leonard (1984) to implicate certain ideological struc­ tures (e.g. professional knowledge) and social institutions (e.g. the family) in the genesis of the disabled identity. However, Leonard’s materialism is critically limited by his failure to problematise, and explain, the political-economic structures (notably, employment markets) which economically devalue disabled people and thus expose them to ideological marginalisation. Amongst other things, materialism requires the recognition that all social relations are products of the practices which humans pursue in meeting their basic needs for food, shelter, affective ties, movement and the like. The social practices of each community are seen as transforming the basic materials— both physical and biological—received from previous societies (Bottomore et al.3 1983). These basic, historically-received materials are known to materialism as ‘first nature’, and include everything from the built environment to the bodies social actors receive from previous generations. When these materials are then taken and remade by a succeeding society they become known as ‘second nature’. From materialism emerges a distinctive conception of disability which parallels this twin conception of first and second natures [see, for example, Abberley (1987, 1991a,b), Finkelstein (1980) and Oliver (1986, 1990)]. These theorists have insisted upon an important conceptual distinction between impairment, which refers to the absence of part of or all of a limb, or having a defective limb, organism or mechanism of the body and disability, which is the socially imposed state of exclusion or constraint that physically impaired individuals may be forced to endure (Oliver, 1990). From this disability is defined as a social oppression which any society might produce in its transformation of first nature—the bodies and materials received from previous social formations. The critical point is that the social construction of physically impaired people as disabled people arises, in the first

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194 B. J. Gleeson instance, from the specific ways in which society organises its basic material activities (work, transport, leisure, domestic activities). Attitudes, discourses and symbolic representations are, of course, critical to the reproduction of disablement, but are themselves the product of the social practices which society undertakes in order to meet its basic material needs. Important is the assumption that impairment is simply a bodily state, characterised by absence or altered physiology, which defines the physicality of certain people. No a priori assumption is made about the social meaning or significance of impairment. Impairment can only be understood con­ cretely—viz. historically and culturally—through its socialisation as disability or some other (less repressive) social identity. This is not to say that the materialist position ignores the real limits which nature, through impairment, places upon individuals. Rather, materialists seek to separate, both ontologically and politically, the oppressive social experience of disability from the unique functional limitations {and capacities) which impairment can pose for individuals. Impairment is a form of first nature which certainly embodies a given set of limitations and abilities which then places real and in­ eluctable conditions on the social capacities of certain individuals. However, the social capacities of impaired people can never be defined as a set of knowable and historically fixed ‘functional limitations’. The capacities of impaired people are conditioned both culturally and historically and must therefore be defined through concrete spatiotemporal analyses. Far from being a natural human experience, disability is what may become of impairment as each society produces itself sociospatially: there is no necessary correspondence between impairment and disability. There are only historicalgeographical correspondences which obtain when some societies, in the course of producing and reproducing themselves, oppressively transform impaired first nature as disablement. As the foregoing survey demonstrated, there is an established tendency for disability analysts to reduce disability to impairment: the ahistorical and aspatial assumption that nature dictates the social delimitation of disability. Against this, materialism recognises that different societies may produce environ­ ments which liberate the capacities of impaired people whilst not aggravating their limitations. It is certainly possible to point to historical societies where impairment was sociospatially reproduced in far less disabling ways than has been the case in capitalism. The historical analyses of Morris (1969), Topliss (1979), Finkelstein (1980), Ryan & Thomas (1987), Gleeson (1993) and Dorn (1994) have all opposed the idea that capitalist society is inherently less disabling than previous social forms. Gleeson’s (1993) substantial empirical investigation has shown, for example, that whilst impairment was probably a prosaic feature of the feudal England, disablement was not. Gleeson (1993) attributes the non-disabling character of feudal English society both to a confined realm of physical interaction and, more importantly, to the relatively weak presence of commodity production. He argues that the growth of commodity relations in late feudal England (i.e. from around the 15th century) slowly eroded the labour-power of impaired people. Market relations,

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and the commodification of labour, introduced a social evaluation of work—the law of value—into peasant households which had heretofore been relatively autonomous production units. The increasing social authority of the law of value meant the submission of peasant households to an abstract external force (market relations) which appraised the worth of individual labour in terms of average productivity standards. From the first, this competitive, social evaluation of individual labour-power meant that ‘slower’, ‘weaker’ or more inflexible workers were devalued in terms of their potential for paid work [see also Mandel (1968) on this]. Impaired workers thus entered the first historical stage of capitalist accummulation handicapped by the devaluing logic of the law of value and competitive commodity relations. Also under the impress of commodity relations, sites of production were themselves evolving (in fact, convulsively by the late 18th century), and were recreating as social spaces which were compelled by the logic of competition to seek the most productive forms of labour-power. The ‘original handicap’ which early commodity relations bestowed upon impaired people was crucial in setting a trajectory of change in both the social relations of production and their sociospatial settings (e.g. factories) which progressively devalued their labour power. The commodification of labour resulted in the production of increasingly disabling environments in Britain and its colonies. The emergence of the industrial city in the late eighteenth century crystallised the sociospatial oppression of disabled people which had been slowly rising after the appearance of commodity relations in the late feudal era. One disabling feature of the industrial city was the new separation of home and work, a common (if not universal) aspect of industrialism which was all, but absent in the feudal era. This disjuncture of home and work created a powerfully disabling friction in everyday life for physically impaired people. In addition, industrial workplaces were structured and used in ways which disabled ‘uncompetitive’ workers, including physically impaired people. The rise of mechanised forms of production introduced productivity standards which assumed a ‘normal’ (viz, usually male and non-impaired) worker’s body and disabled all others. As Marx (1981) pointed out at the time, one result of these changes was the production of an ‘incapable’ stratum of labour, most of which was eventually incarcerated in a new institutional system of workhouses, hospitals, asylums, and (later) ‘crippleages’. Industrialism, he believed produced too great a section of the population which is ... incapable of work, which owing to its situation is dependent on the exploitation of the labour of others or on kinds of work that can only count as such within a miserable mode of production. (Marx, 1981, p. 366.) For impaired people then, the social history of capitalism appears as a sociospatial dialectic of commodification and spatial change which progressively disabled their labour power.

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196 B. J. Gleeson The Need for Historical-Materialist Research

The foregoing presented an historical sketch of the oppressive socialisation of the impaired body in a relatively recent period of human history. [Gleeson’s (1993) analysis provides a comprehensive version of this account, contrasting the experi­ ences of disabled people in late feudal England and Colonial (19th century) Melbourne.] However, there remains a vast continent of human history—including, for example, ‘primitive’ and Classical societies—which remains unexplored by materialist scholars of disability. Moreover, the heretofore limited attempts to analyse the concrete situation of disabled people in the variety of feudal and industrial capitalist societies await further empirical elaboration. (What do we know, for example, about the specific experiences of disabled people during the separate, first phases of industrialisation in Britain and the United States?) There is, therefore, a pressing need for empirically-grounded research on the social experience of disabled people in nearly all historical societies. Such research is urgently required if materialism isn’t itself to repeat the errors of conventional social science by proposing ahistorical and speculative accounts of disablement. There is, of course, a more immediate political reason underscoring the call for empirically-sound research on disability by materialist analysts. A distinguishing, and politically-salient, feature of materialism is its insistence that the fundamental relationships of capitalist society are implicated in the social oppression of disabled people. This suggests that the eliminiation of disablement (and, for that matter, many other forms of oppression) requires a radical transformation, rather than a reform, of capitalism. Historically-grounded research is thus needed both to identify those specific dynamics of capitalism which oppress disabled people and also to demonstrate the ways in which impairment was experienced in alternative social formations. The latter research aim is critical given that capitalism has not been the exclusive source of disablement in human history, and the project of creating a new, non-disabling society must surely have regard for the oppressive potential of putatively-emancipatory political movements. For this reason, it is politically im­ portant that materialists turn a critical gaze towards the historical experience of disabled people in ‘socialist’ societies. A Radical Political Agenda

What are the conceptual and political implications of the materialist viewpoint for disability? An important argument of the foregoing review was that disability cannot be dematerialised and explained simply as the product of discriminatory beliefs, symbols and perceptions. Materialism opposes such idealism by arguing that distinct social oppressions, such as disability, arise from the concrete practices which define a mode of life. Oliver, for example, has argued that the experience of impairment cannot be understood in terms of purely internal psychological or inter­ personal processes, but requires a whole range of other material factors such as housing, finance, employment, the built environment and family circumstances to be taken into account. (1990, p. 69.)

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This is certainly not to say that attitudinal change, for example, should not be an important goal in the struggle against disablement. The materialist view acknow­ ledges the critical role of beliefs, symbols, ideologies, and the like, in reproducing disabling social environments. [Shakespeare (1994), for example, has argued per­ suasively for the consideration of ‘cultural representations’ within ‘social models’ of disability.] However, the central emphasis for a transformative political practice must be on changing the material structures which marginalise and devalue impaired people. Importantly, these structural phenomena cannot be reduced to simple ‘material surfaces’, such as the built environment, but must include the social practices and institutions which devalorise the capabilities of impaired people [18]. The discrimi­ natory design of workplaces, for example, often appears to disabled people as the immediate source of their economic exclusion. However, this is true in only a very immediate sense. The real source of economic devaluation is the set of sociostructural forces that condition the production of disabling workplaces. The commodity labour market is, for example, clearly implicated in the construction of disabling employment environments. This market realm, through the principle of employ­ ment competition, ensures that certain individuals (or bodies) will be rewarded and socially-enabled by paid labour, whilst others are economically devalued and sen­ tenced to social dependency, or worse. An obvious target for change is the social system through which the labour of individuals is valued (and devalued). This suggests that the commodity labour market must either be dispensed with or radically restructured so that the principle of competition is displaced from its central role in evaluating fitness for employment (cf. Barnes, 1992; Trowbridge, 1993; Lunt & Thornton, 1994). The commodity labour market uses the lens of competition to distort and magnify the limitations of impaired people: a just society would seek to liberate the bodily capacities of all individuals (cf. Young, 1990). Short of a profound transformation of competitive labour relations, it is difficult to imagine the end of disablement. In the era of global ‘market truimphalism’ (Altvater, 1993), many will promptly dismiss the materialist view forthwith as politically naive. A recognition, however, that commodity relations exploit workers or that patriarchy oppresses women has not stopped feminist and class-based social movements pursuing broad political change aimed at transforming these oppressive structures. Neither should the vastness of the emancipatory project overwhelm disabled people and their allies. NOTES [1] Historical materialism—the philosophical underpinning of Marxist social theory—sees the production of people’s natural (physical) needs as the motive force in human history (Bottomore et ah, 1983). Very broadly, materialism is a mode of social explanation that emphasises the economic and social activities which humans undertake in order to meet their everyday needs. In this view, ideological, psychological and other non-material processes, are seen as important, though not in themselves determinative, dynamics in social life.

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198 B. J. Gleeson [2] This is to say, self-consciously organised, rather than lucid or insightful. [3] Barnes (1995, p. 378) has argued recently that ‘most of the work on disability coming out of ... the USA ... has been bereft of theory’. [4] There are relatively few academic departments which deal exclusively with disability theory and policy in Western universities. [5] The collections edited by Barton (1989) and Swain et al. (1993) are exceptions to this observation; although in both volumes the engagement by many of the contributing authors with social theory is both uneven and limited. [6] See, for example, the collection by Begum et al (1994) and the recent review of this by Oliver (1995). [7] Normalisation continues to inform service policy and practice in many Western countries: witness the recent volume of essays on Normalisation in Practice edited by Alaszewski & Ong (1990). [8] See also Wolfensberger & Nirje (1972) for a full explanation of the principle. [9] The title of Hevey’s (1992) recent treatise on disability, social theory and photography suggests the abandonment of disabled people by the discipline of history. [10] These authors make the general claim that ‘while modem social science developed, the disabled as a social group were ignored’ (McCagg & Siegelbaum, 1989, p. 5). [11] The six historical essays on disability in the Soviet Union in the McCagg & Siegelbaum (1989) collection must also be noted here. Unfortunately, the rather singular national focus of the studies reduces their relevance to the present discussion. [12] See also Berkowitz (1987) and Liachowitz (1988) for alternative statist accounts which focus on the development of disability policy in the United States. [13] ‘The customs and code of honour of the tribe are opposed to any individual accumulation in excess of the average’ (Mandel, 1968, pp. 30-31, his emphasis). [14] It is timely, given this and previous criticisms, to recall here Marx’s (1978, p. 5) warning that we cannot judge ‘a period of transformation by its own consciousness; on the contrary, this consciousness must be explained rather from the contradictions of material life ... ’. [15] Liachowitz (1988) has also produced a chronicle of American disability legislation. The author alludes to a materialist position by asserting that disability is the product of the ‘relationship between physically impaired individuals and their social environments ... ’ (1988, p. 2). However, Liachowitz later reduces this ‘social environment’ to its juridical content by announcing her intention to ‘demonstrate how particular laws have converted physical deviation into social and civil disability’ (1988, p. 3, emphasis added). Thus, the entire material substrate of the social environment vanishes leaving only a juridical superstructure. [16] Criticism of the important and erudite work of Hahn is made with some hesitation. However, it must be said that he tends at times to dematerialise his analysis by relying too heavily on aesthetically-based explanations of disability (see especially his 1987 paper). [17] According to Marx, the industrial reserve army included ‘the demoralised, the ragged, and those unable to work’, including ‘the victims of industry ... the mutilated’ (1976, p. 797). [18] See Gleeson (1993, 1995) and Longmore (1995), for a fuller explanation of the dangers of crude materialisms which reduce the the social oppression of disability to a problem of ‘access’ in the built environment. REFERENCES A bb er ley , P. (1985) Policing Cripples: social theory and physical handicap, Unpublished Paper, Bristol Polytechnic. A bb er ley , P. (1987) The concept of oppression and the development of a social theory of disability, Disability, Handicap and Society, 2, pp. 5-20. A b b er ley , P. (1989) Disabled people, normality and social work, in L. B a r t o n (Ed.) Disability and Dependency (London, Falmer).

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S afilios -R o t h sc h ild , C. (1970) The Sociology and Social Psychology of Disability and Rehabilitation

(New York, University Press of America). & G roce , N. (1988) Impairment as a human constant: cross-cultural and historical perspectives on variation, Journal of Social Issues, 44, pp. 23-37. S hakespeare , T. (1994) Cultural representation of disabled people: dustbins for disavowal? Disability & Society, 9, pp. 283-299. S m ith , N.J. & S m ith , H.C. (1991) Physical Disability and Handicap: a social work approach (Melbourne, Longman Cheshire). S to n e , D. (1984) The Disabled State (Philadelphia, Temple University Press). S w ain , J., F ink elstein , V., F r e n c h , S. & O liver , M. (1993) (Eds) Disabling Barriers-enabling environments (London, Sage). T horpe , C. & T oikka , R. (1980) Determinants of racial differentials in Social Security benefits, Review of Black Political Economy, 10(4). T o p lis s , E. (1979) Provision for the Disabled, 2nd edn. (Oxford, Blackwell). T o p lis s , E. (1982) Social Responses to Handicap (London, Longman). T o w n s e n d , P. (1979) Poverty in the United Kingdom (Harmondsworth, Penguin). T r o w b r id g e , R. (1993) Disability and productive employment: a prediction of failure and a proposal for change, Australian Journal of Social Issues, 28, pp. 50-61. T u r n e r , B.S. (1984) The Body and Society: explanations in social theory (Oxford, Blackwell). T u r n er , B.S. (1991) Recent developments in the theory of the body, in: M. F e a th e r sto n e , M. H epw orth & B. S. T u r n er (Eds) The Body Social Process and Cultural Theory (London, Sage). U rm s o n , J.O. & R ee, J. (Eds) (1981) The Concise Encyclopedia of Western Philosophy and Philo­ sophers (London, Unwin Hyman). V ogel , L. (1983) Marxism and the Oppression of Women: toward a unitary theory (London, Pluto Press). W a lk e r , A. (1980), The social creation of poverty and dependency in old age, Journal of Social Policy, 9(1). W arren , B. (1980), Some thoughts towards a philosophy of physical handicap, in: L aura , R.S. (Ed), The Problem of Handicap (Melbourne, Macmillan). W a ts o n , F. (1930) Civilisation and the Cripple (London, John Bale, Sons and Danielsson). W illia m s , C. & T h o r p e , B. (1992) Beyond Industrial Sociology: the work of women and men (Sydney, Allen & Unwin). W o lfensberger , W . (1983) Social role valorization: a proposed new term for the principle of normalization, Mental Retardation, 21(6), pp. 234-239. W o lfensberger , W . (1995) Social role valorization is too conservative, no it is too radical, Disability & Society, 10, pp. 365-367. W o lfensberger , W . & T h o m as , S. (1983) Passing: program analysis of service systems' implementation of normalization goals, 2nd edn (Toronto, National Institute on Mental Retardation). S cheer , J.

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202 B. J. Gleeson W r ig h t , B.A. (1960) Physical Disability—a psychological approach (New York, Harper and Row). Y o u n g , I.M. (1990) Justice and the Politics of Difference (Princeton, NJ, Princeton University Z o la ,

Press). I. (1993) Self, identity and the naming question: reflections on the language of disability, Social Science and Medicine, 36(2), pp. 167-173.

[4]

The politics of disability MIKE OLIVER Abstract This paper briefly considers the influence of the economy on the material circumstances of disabled people and some of the reasons why a politics of disability has now become possible. It goes on to consider the role of dis­ ability organisations in relation to the state and in the articulation of the political demands of disabled people. Finally some ways forward in the construction of a truly socialist policy relevant to meeting of the needs of disabled people is considered.

Historically disability has been seen as a humanitarian, medical, admin­ istrative or economic issue. Nearly 20 years ago, Louis Battye, himself dis­ abled, captured the flavour of this when he wrote: ‘The cripple is an object of Christian charity, a socio-medical problem, a stumbling nuisance, and an embarrassment to the girl he falls in love with. He is a vocation for saints, a livelihood for the manufacture of wheelchairs, a target for busybodies, and a means by which prosperous citizens assuage their conscience. He is at the mercy of overworked doctors and nurses and underworked bureaucrats and social investigators. He is pitied and ignored, helped and patronized, understood and stared at. But he is hardly ever taken seriously as a man.’ (Battye 1966) Leaving aside the sexism of this comment, being taken seriously implies the need to take part in political as well as other kinds of relationship. The years since Battye wrote have seen increasing demands by and on behalf of disabled people, notably in the areas of integration and on National Disability Income. However, the assumption underpinning these demands has been that if an adequate case is made, society will respond rationally and deliver the goods. This paper looks at some of the factors involved in this political process and suggests that only a socialist social policy can ever hope to deliver these goods. THE ROLE OF THE ECONOMY AND THE INFLUENCES OF TRADITIONAL POLITICAL ACTIVITY To begin with it is more than a mere truism to state that the fortunes of dis­ abled people, as of everybody else, are closely bound up with the economy. It is not only people of left wing persuasion who recognise this significance for as Reg Prentice, formerly Minister for the Disabled, pointed out when dis­ cussing services for disabled people: ‘In the past the rate of growth had already been conditioned to some degree by economic circumstances.’ (RADAR 1980) In other words, goods and services for disabled people are dependent upon the size of the national cake.

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CRITICAL SOCIAL POLICY It follows from this that in order to improve the material circumstances of disabled people, two possible though not mutually exclusive options are open. The first of these is to increase the size of the national cake whereby living standards improve for everybody, including disabled people. This may occur through what is usually called economic growth and Britain’s economy has grown almost consistently over the past 250 years, though since the mid 1970’s it has come to a halt. Whether this halt is temporary or permanent is subject to debate amongst economists and industrialists but the view taken here is that disabled people can no longer look to improved services through economic growth. This leads on to the second option which is to increase the share of the economic surplus that is redistributed to meet the needs of the disabled population. This, of course, involves political activity through polit­ ical parties, trade unions, pressure groups and so on, for in order to increase the share of one group, will inevitably mean that others have to take less. Whilst not wishing to make party political points at this stage, it does indeed follow that as a consequence of this attitude of the Conservative Party, a politics of disability becomes possible. By admitting that disabled people like everyone else, are competing for their share of scarce national resources, the Conservative Party had moved away from the traditional bi­ partisan approach to disabled people which implicitly and sometimes explic­ itly assumed that services for disabled people would be provided on humanit­ arian grounds, regardless of the state of the economy or the competing claims of other groups. In recent years there has also been a second influence which has made a politics of disability possible and that is the gradual re-definition of disability by disabled people themselves, not as personal tragedy but rather as social oppression. This process of re-definition has recently been described by Sutheland (1981), ‘It is widely assumed that most disabilities impose considerable restrictions, such as lack of mobility, limitations in finding and holding employment, isolation and dif­ ficulty in integrating with able-bodied people. People with disabilities do have to face all these restrictions, and others, but such restrictions are not imposed by their disabilities. They are imposed by a society which discriminates against people with disabilties, creating restrictions by denying people the means to exercise their capabilities. ’ (My italics) There are a number of ways that disabled people can effect changes in the material circumstances of their lives even within existing social structures. Obviously there are the traditional ones like by voting at local and general elections, by joining organisations like political parties, trade unions and the like, and by individually trying to influence events. None of these are likely to be very successful and certainly have not been so in the past because disability is too specific a problem for large political organisations, and individuals lack sufficient power to make their voices heard. Further, while in numerical terms, over 3 million disabled people con­ stitute a potential political force of some importance, the likelihood of con­ certed and cohesive political action is remote. As Abrams and O’Brien (1981) point out in considering a similar question regarding the elderly: 22

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DISABILITY The long-standing fear that, in order to further their own interests, the millions of elderly people in this country will form themselves into a powerful political pressure group has turned out to be empty.’ They go on to list seven reasons why the fear of the elderly as a pressure group has turned out to be empty. It may be useful to adapt these briefly in order to discuss the potential (or lack of it) of disabled people becoming a significant political force. To begin with there is a great deal of variety within the disabled population as a whole-differences in social class, age, sex, family circumstances and clinical conditions - as well as the fact that disability may have developed after political commitments had been established. In addition, many disabled people do not necessarily regard themselves as disabled, or even if they do, would not contemplate joining an organisation for disabled people. Finally, as a consequence of disability, some people may disengage from political activity, either because their physical impairment imposes limitations of a physical or a psychological kind, or because they are aware that in many contexts they lack any basis for exercising power, eg through the withdrawal of their labour. What Abrams and O’Brien neglect in their discussion is any consideration of the relationship of the government through its executive arm the state, with disabled people, through their representatives, a multitude of organisa­ tions o f and fo r the disabled. These organisations adopt a variety of different approaches to the state and in what follows is our attempt to briefly discuss some of the main ones, and to consider the state’s response. DISABILITY ORGANIZATIONS AND THE STATE The most recent copy of the Disability Rights Handbook (Robertson Ed. 1984) lists more than 400 disability organizations of one kind or another. Any attempt to provide a rigid framework for analysing the relationship of these different and divergent organizations with the state is doomed to failure. It is possible however to identify four distinct approaches that affect such rela­ tionships and these are discussed below. Further it is possible to place these approaches in historical context, from ‘partnership’, through ‘income’ to ‘self-help’ and ‘populist’ approaches. Finally it can be argued that the rise of the latter two approaches from the beginning of the 1970’s stems partly from the failure of the earlier approaches to provide satisfactory services for, or representation to disabled people. However before considering this further, it is necessary to describe briefly the approaches concerned and to locate various organizations within this framework.

The partnership approach

There are a number of dimensions to this. Some organizations like the Royal Association of Disability and Rehabilitation interweave with the organs of government through consultation, commenting on reports and proposed legislation and organising conferences. Others, like the Spastics Society, the Cheshire Homes and the like, provide similar services like day care, residen­ tial accommodation and social work support, to statutory ones but liaise with 23

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CRITICAL SOCIAL POLICY government in order not to duplicate or overlap. Yet others, like the Joint Committee on Mobility, which is itself an umbrella organisation, provide a forum whereby government can monitor existing provision and test out its ideas for future policies.

The income approach

This equates problems of disability with those of poverty and suggests that a National Disability Income would ultimately solve the problem. There are two major organisations who pursue this particular approach: The Disable­ ment Income Group and the Disability Alliance which is a loose federation of a number of groups. It would be wrong to suggest, however, that these organ­ isations represent a co-ordinated approach, for there are very real differences between them. The Disablement Income Group is avowedly non-party pol­ itical and has members of all parties among its honorary officers. The Disability Alliance, on the other hand, is closely allied to the ‘poverty lobby’ stemming from left of centre organisations like the Labour Party, the Fabian Society and the Child Poverty Action Group. Recently it has been recognised that any attempt to achieve a National Disability Income in Thatcherite Britain will depend upon presenting a unified front on this particular issue, and informal discussions are taking place with a view to providing a single proposal for a National Disability Pension around which many groups could unite. The achievement of such an aim, whichever party is in power, seems highly unlikely however, given current and future economic circumstances.

The self-help approach

Some groups like the Spinal Injuries Association and the Association of Disabled Professionals, while not overtly political, are nevertheless in the business of attempting to change things for the better for their members. They attempt to do this by making their collective knowledge available to the whole membership, whether such knowledge be about self-care in respect of particular disabling conditions or about the possibilities of professional employment. Not all of the organizations however deal with the state at a national level. Recently following earlier developments in the United States, a number of centres for Independent Living have sprung up and because they are limited to particular areas, their dealings with the state are at a local level.

The populist approach

This is characteristic of older organizations like the National Federation of the Blind and the National Union of the Deaf, and more recent newcomers like the Union of the Physically Impaired Against Segregation and Sisters against Disablement. The former organizations developed out of a general dis­ content with traditional organizations favouring the ‘partnership approach’ whereas the latter organizations were strongly influenced by socialist and/or feminist philosophies. However, these groups have one thing in common and that is their belief that disabled people must work out their own collective 24

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DISABILITY solutions to the problems of their membership and that they must do this through democratic organizations of disabled people. Thus the Union of the Physically Impaired Against Segregation strongly condemns the current situation amongst the majority of disability organizations because: ‘The majority of physically impaired people are not drawn into the struggle but encouraged to become increasingly dependent upon those who struggle on ‘‘their behalf” .’ (UPIAS 1975) Obviously these approaches do not exactly fit the activities of all organisa­ tions and they are also therefore, a model or ideal type, developed to draw out to some of the underlying processes involved. Additionally they look at the relationship between government and organised groups and the nature of this relationship is often problematic and difficult to determine. Most importantly, none of these approaches is likely to produce significant changes in the material circumstances of disabled people, at least in the forseeable future. That is not, of course, to say that as approaches in themselves they are not worth pursuing, for clearly there are gains to be made: gains to be made in improving co-ordination between the statutory and voluntary sectors, in securing increases in rates of existing benefits and minor exten­ sions in them, in re-orienting professional practice and placing more respons­ ibility for control over their lives upon disabled people and finally in raising the consciousness and confidence of disabled people within society. However, the basic point is that within the current economic situation such gains are likely to be small scale and we are unlikely to see radical changes in the material and social circumstances of disabled people. This is not only because,of the limitations in the approaches discussed above, but also because there is, in addition, a second aspect of this relationship between dis­ abled people and the state, and that concerns the way the state responds to such approaches. In order to discuss this fully, one needs to develop a theory of the state which goes beyond the ideas of it simply responding in a neutral manner to a variety of competing needs and demands and unfortunately there is not sufficient space to do that here. So here it will merely be suggested that in the responding to the different approaches mentioned above, the state provides services in such a way to foster divisions within the disabled popula­ tion as a whole rather than to cement alliances. For example, tax allowances for the blind but not other categories of disability, mobility allowances for those who cannot walk but not for those who can, higher pensions for those injured at work or in the services and so on. The state adopts this tactic in dealing with other groups also —differential treatment of groups within an overall class may facilitate a ‘decomposition of that class.’ The state operates in this way in order to mediate between the competing demands of a variety of groups in ‘need’ and to allocate resources in such a way that is politically acceptable to a wide variety of different interests. Whether ultimately the state by acting in this way is acting as an executive committee for one particular interest or in a more ‘relatively autonomous’ way has been the subject of heated debate amongst socialists. However, as a consequence of the emergence of a politics of disability, it is clear that the state can no longer be regarded as merely a neutral or humanitarian force in the lives of disabled people. 25

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CRITICAL SOCIAL POLICY In briefly considering the political economy of disability in this section the focus has been on the possibility of improving the material circumstances of disabled people and on the relationship of disability organisations to the state. The conclusions from this are fairly pessimistic in that it is unlikely that disabled people will be better off as a consequence of economic changes either through growth or redistribution or that through political process, the disabled population a a single minority group will succeed in articulating their demands successfully. Where then does this leave us for the future? TOWARDS THE CONSTRUCTION OF A SOCIALIST POLICY In constructing a socialist policy towards disabled people, traditional approaches from the left need to be placed in appropriate context. Certainly, the Labour Party when in power has made significant improvements in the material circumstances of disabled people but criticisms of their social policy generally can also be made of their programme for disabled people. Walker (1982) has recently pointed out that on the left social policy has always been subservient to economic policy and in addition, social policy has generally been imposed from the top down rather than built from the bottom up. It can be seen that these criticisms apply to the main piece of legislation introduced by the Labour Party for disabled people, the Chronically Sick and Disabled Persons Act. Certainly the Act, through the insertion of the clause ‘where practicable and reasonable’ has meant that implementation has been subject to the vagaries of economic circumstances, to such an extent that services provided under the Act are determined more by where the disabled person lives than by his or her needs (Shearer 1981, Cook and Mitchell 1982). An equally important criticism of the Act concerns its underlying philo­ sophy which is paternalistic and if anything reinforces the dependency of dis­ abled people. This is most powerfully stated by Shearer who argues that: ‘The goodwill behind the 1970 Act’s provision cannot be doubted. But the philo­ sophy 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 holidy 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 individual preference, sits oddly with the rhetoric which asserts that people with disabilities should have greater access to the range of social choices that many of the rest of society take for granted. The substitution of kind for cash sits no less uneasily with aspirations to enhance the self-determination and dignity of people with disabilities, in a society where status and respect has so 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.’ (Shearer, in Walker and Townsend Ed. 1981) Thus what some liberal commentators have described as nothing less than a ‘Charter for the Disabled’ has in reality turned out to be nothing more than a ‘Charter for Professionals.’ 26

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DISABILITY A third, telling criticism is of the way the Act individualises the problems of disability, equating illness and disability and treating them as one (viz. The Chronically Sick and Disabled Persons Act). Most important however is the question of identification and registration which was one of only two items within the whole Act which imposed a mandatory duty on all local author­ ities. The difficulties of compiling and updating registers have been discussed in detail elsewhere (Oliver 1983). The basic point to be made here however, is that such identification and registration procedures assume hat the problems that disabled people face are because there is something wrong with them. However alternative definitions of the problem are being articulated which suggest that the crucial factor is ‘the way physical and social environments impose limitations upon certain groups or categories of people/ (Oliver 1983). If the problem then is not the impaired individual but the disabling society, then bourgeois notions that it is necessary to know the numbers of individuals concerned before services can be planned and delivered, become irrelevant. Instead, we are directed to the socialist task of identifying the way the structures and institutions of society disable people with impairments, so that ultimately such disabling structures can be eradicated. For such a task, the counting of heads is simply unnecessary. It has been suggested that the way of removing these disabling structures is through anti-discrimination legislation (CORAD 1982). Consequently there have recently been two attempts, through Private Member’s Bills, to get such legislation through Parliament. The second of these, sponsored by Bob Wareing, a Labour MP, was closely tied to the Chronically Sick and Disabled Person’s Act. It is perhaps ironic that the biggest demonstration ever staged in support of legislation by disabled people was not to usher in a new law by making discrimination illegal but in support of an amendment to an old Act whose flaws and defects are well known. However from a socialist viewpoint suspicions about anti-discrimination legislation go beyond such concerns as is shown by Gregory’s penetrating analysis of such legislation with regard to blacks and women in this country. She suggests that: ‘Adopting a similar approach, anti-discrimination legislation can be seen as a res­ ponse 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 conforniative 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.’ (Fine et al. 1979) She realistically concludes, ‘At the same time, it is important to disperse the cloud of mystification surrounding the legislation, so that it is clearly recognized as part of the processes of contain­ ment. 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.’ (Fine et al 1979) That is not to say that the addition of anti-discrimination legislation for dis­ abled people is not a worthwhile socialist objective for it clearly is, in the short-term at least. However, the fundamental question for disabled people 27

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CRITICAL SOCIAL POLICY and their organizations is, do they want to be integrated into society as it is, or do they hope that in the process of such integration, society will (have to) also change. The dominant view up to now is captured by a recent report: ‘Integration for the disabled means a thousand things. It means the absence of segregation. It means social acceptance. It means being able to be treated like every­ body else.’ (Snowdon 1976) No hint here or throughout the Report of any idea that such demands are unachievable in a capitalist society. There is however a growing recognition amongst disabled individuals 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.’ (Finkelstein 1980) So too with some organizations of disabled people who have recognised that, ‘physical disability is (therefore) a particular form of social oppression.’ (UP IAS 1976) As well as the nature of this oppression being identified by disabled people and their organizations others have documented some of the dimensions of this oppression. Thus Townsend (1979) has demonstrated the extent of poverty amongst disabled people; Grover and Gladstone (1981) have shown that disabled people fare worse in the labour market than their able-bodied counterparts; and Tomlinson (1982) has shown that education for disabled people is shaped more by the vested interests of the professions than by their particular needs. By bringing politics into the issue of disability, it thus becomes possible to recognise that this oppression is not something that is special or particular to disabled people, but rather that all social relations under capitalism are char­ acterised by oppression - one class oppresses another, and that disabled people are therefore inevitably part of that oppressed class. However attempts to construct alliances between various segments of the oppressed class have not got very far with perhaps one or two exceptions (Rowbotham, Segal and Wainwright 1980) and most disabled people and their organiza­ tions do not even recognise the isue as problematic. And indeed, even those that do are cynical about the possibility of a socialist strategy being able to build a unified class. ‘Certainly I know of no group of the “revolutionary left” that takes disablement seriously. This does not come as any great surprise. Such groups are notable for their failure to adjust to the shift of emphasis that has been taking place in radical politics to take account of the personal sphere of people’s lives. Feminism has made a few dents in these remarkably entrenched attitudes, but women have on the whole come to the conclusion that it’s less trouble just to get on with what needs doing. So have gays. So have radical educationalists. We may be out in the cold, but we’re in good company.’ (Sutherland 1981) More general attempts to construct a truly socialist policy have not got very far in considering the needs of certain minority groups except to note their ‘unproductive’ role in relation to the economy. Thus, as Phillipson has pointed out: 28

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DISABILITY ‘Marxists have, in general failed to identify the broad outlines of a socialist social policy. Still less have they considered the position of specific groups such as the elderly and disabled within the context of socialism.’ (Phillipson 1982) One thing that is clear in constructing a socialist policy is that the traditional approach of channelling more resources through professionals is not the way forward for as Taylor has cogently argued: ‘What is clear, however, is that the traditional alliance of conventional social demo­ cracy with liberal-professionals has to be jettisoned: too much of liberal profes­ sional work has proven to be harrassing and alienating to working-class experience, and too little of it has proved to be effective in solving the specific problems of the class.’ (Taylor 1981) As has already been suggested, this general criticism certainly accurately depicts the experiences of disabled people in recent years. A consequence of this has been a gradual shift away from the dominant social attitude of ‘enlightened guardianship’ and towards that of ‘disabled power’ (Dartington, Miller and Gwynne 1981). Reflecting this shift, in recent years there has been a significant rise in the number of disability organisations run and controlled by disabled people themselves; organisations of disabled people rather than organisations for disabled people. Again this distinction can be placed in appropriate context when considering the four approaches of the voluntary sector to the state discussed earlier: the partnership approach based on enlightened guardian­ ship is gradually being rejected, by many disabled people at least, in favour of self-help or populist approaches based on disabled power. However, what is being described is a movement which is at present in its infancy for as Large has noted: ‘Organisations for the disabled out number organisations of disabled people by 100 to one and disabled people are missing from the governing bodies of the former and from their workforces. Moreover, organisations for the disabled - which proudly represent the interests of disabled people to government - and are used and supported by government for this purpose - often lack direct contact with disabled people, and are often very inadequately accountable to them.’ (Large 1981) Despite this current imbalance, the 1980s have seen two very important events in the growth of organisations of disabled people; the formation of the British Council of Organisations of Disabled People and the Disabled Persons International which organised its first World Congress in 1981. Neither of these organizations was formed without engaging in struggles with existing, more traditional organizations for disabled people. BCODP was formed during the International year of Disabled People and was immediately confronted with a threat to its existence with a counter proposal to set up an alternative umbrella organizaton for disabled people. It was only BCODP’s publication of an open letter to Lord Snowdon asking him not to act as Chairman of the proposed organization that the proposal was eventually shelved. However, engaging in such a struggle has led to BCODP being labelled as Marxist by many people involved in disability organizations and the provision of services for disabled people. Thus one prominent 29

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CRITICAL SOCIAL POLICY disabled person has written: ‘I am not enthused by the performance of the British Council of Organizations of Disabled People; I do not buy the Marxist view of the world which tells us that dis­ abled people are not handicapped by their own disabilities, but by our socially oppressive capitalist culture.’ (Goldsmith 1982) This distortion of its nature has left BCODP in a vulnerable position due to the difficulties of attracting funding for such supposedly extreme organiza­ tions. At this point, it is worth stating that while some Council members may be socialist, BCODP is not a socialist organization and views from all shades of the political spectrum are reflected within it. It does attempt to represent organizations of disabled people however, and therefore needs to be taken seriously by those interested in constructing a genuine socialist social policy. DPI, on the other hand, owes its formation to the failure of Rehabilitation International to provide anything other than token participation of disabled people in its activities. At its convention in Canada in 1980 a caucus of dis­ abled people proposed that in future, meetings would only be quorate if more than 50 per cent of the delegates were themselves disabled. This proposal was rejected and the disabled delegates withdrew and set up their own inter­ national orgnization —DPI. Ironically, at the same meeting Rehabilitation International drew up its own Charter for the eighties and saw nothing contradictory in proposing as one of its aims: ‘To take all necessary steps to ensure the fullest possible integration of and equal participation by people with disabilities in all aspects of the life of their communit­ ies.’ (IYDP 1981) Perhaps their definition of communities if a very narrow one! The following year DPI published its own draft charter which began as follows: ‘All people should enjoy certain rights. Because people with disabilities have con­ sistently been denied the right to participate fully in society as free and equal members it is important to state and affirm these rights. All people should be able to enjoy these rights, regardless of race, creed, colour, sex, religion or disability.’ (DPI 1981) When this charter is compared with the one published by Rehabilitation International, two things are clear. Firstly, the aims of the DPI charter cannot realistically be achieved without fundamental changes in the structure of society, whereas the aims of the Rehabiitation International Charter can be accommodated with very little change in society and certainly without materially affecting the social democratic-liberal professional stranglehold on welfare provision. Secondly, DPI recognises that changes will inevitably involve the rights of other powerless or disenfranchised groups whereas rehabilitation sees disability in total isolation from other issues or groups. Again, while DPI is not overtly socialist, its programme for action has profound implications for existing political and economic structures on an international as well as national scale. In order not to repeat the mistakes of earlier attempts to construct a truly socialist policy, it is essential that policy makers work with such representative groups, who may or may not them­ selves be socialist. In this way social policy can be built from the bottom up 30

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DISABILITY and in the longer term, the social democrat-liberal professional stranglehold on the provision of welfare can be broken. Whatever else has emerged out of recent socialist discussions, these two elements are an essential pre-requisite to the building of a truly socialist social policy. CONCLUSIONS In the short term, any improvements in the material and social circumstances of disabled people are inevitably going to be closely tied to the performance of the economy. Therefore due to the unlikelihood of a significant economic upturn and also the lack of coherent political force to articulate the demands of disabled people, any gains are likely to be small-scale and piecemeal. In fact the real problem in the short-term may well be to defend what has already been gained rather than attempt to achieve any real or significant improve­ ments. Those working within the politics of disability will already know that, in fact this has been the major preoccupation in recent years. However, this pessimistic short-term conclusion can be set against optimism for the medium or longer term. Optimism in the sense that disabled people, through their own organisations are beginning to articulate political demands based on their own experience, and this growth in the numbers, power and cohesion of organisations of disabled people is likely to continue throughout the next decade. Optimism further, in that many of the things being said by disabled people are being said by other groups about their own specific circumstances. Optimism finally, in that many of these things are essential pre-requisites to the construction of a truly socialist social policy which will not see the needs of disabled people, and other minority groups, as subservient to the needs of economic policy, but rather will base provision upon the needs of all people based upon their own articulations of what these needs really are. The author is Senior Lecturer in Special Needs, Avery Hill College

Bibliography Abrams, M and O’Brien, P. (1981) Political Attitudes and Ageing in Britain, Age Concern, London. Battye, L. (1966) ‘The Chatterley Sundrome’ in Hunt, P. (Ed) Stigma - The Experience of Disability Chap­ man, London. Cook, J. and Mitchell, P. (1982) Putting Teeth into the Act: A History of Attempts to Enforce the Provision of Section 2 of the Chronically Sick and Disabled Persons Act 1970, RADAR, London. CORAD (1982) Report by the Committee on Restrictions Against Disabled People, HMSO, London. Dartington, T., Miller, E. and Gwynne, G. (1981) A Life Together, Tavistock, London. Disabled People’s International (1981) Draft Charter, Singapore World Congress. Finkelstein, V. (1980) Attitudes & Disabled People, World Rehabilitation Fund, New York. Goldsmith, S. (1982) The Benignity of England, Address, following the Harding Award. Gregory, J. (1979) ‘Sex Discrimination, Work and the Law’ in Fine, B. et al Capitalism and the Rule of Law, Hutchinson, London. Grover, R. and Gladstone, F. (1981) Disabled People - A Right To Work, Redford Square Press, London. Large, P. Enabling the Disabled, Paper given to Royal College of Physicians, London. Oliver, M. (1983) Social Work With Disabled People, Macmillan, London. Phillipson, C. (1982) Capitalism and the Construction of Old Age, Macmillan, London. Rehabilitation International (1981) Charter for the 80s. Rehabilitation International Declaration, 1 YDP England. Robertson, S. (ed) Disability Rights Hnadbook, Disability Alliance, London.

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CRITICAL SOCIAL POLICY Royal Association of Disability and Rehabilitation (1980) Chronically Sick and Disabled Persons Act 1970, 1980-1990? RADAR, London. Rowbotham, S. Segal, L. and Wainwright, H. (1982) Beyond the Fragments, Merlin Press. Shearer, A. (1981) ‘AFramework for Independent Living’ in Walker, A. and Townsend, P. Disbilityin Britain, Martin Robertson, London. Snowdon Report (1976) Integrating the Disabled, National Fund for Research into Crippling Diseases, Horsham, Sussex. Sutherland, A. (1981) Disabled We Stand, Souvenir Press, London. Taylor, I. (1981) Law and Order, Arguments for Socialism, Macmillan, London. Tomlinson, S. (1982) A Sociology of Special Education, RKP, London. Topliss, E. and Gould, B. (1981) v4 Charter for the Disabled, Blackwell and Robertson, Oxford. Townsend, P. (1979) Poverty in the United Kingdom, Penguin, London. Union of Physically Impaired Against Segregation (1975) Fundamental Principles of Disability, UPIA, London. Walker, A. (1982) ‘Why we need a Social Strategy’ Marxism Today, September.

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[5] r n* m* Unclei mlom andl r lmy lim t

Some Reflections on the Cripple as Negro LEONARD KRIEGEL 1 find myself suddenly in the world and I recognize that I have one right alone: that of demanding human behavior from the other. Frantz Fanon, Black Skin, White Masks

IT w a s n ie t z s c h e

who reminded the nineteenth century that man can only define himself when he recognizes his true relation both to the self and to the other. When man accepts the umbilical cord tying him to society, he does so with the knowledge that he must eventually destroy it if only to re-tie it more securely. Nietzsche was not alone. The men who wrote the Old and New Testaments, the Greek poets, indeed, almost all the saints and apocalyptic madmen who embroider the history of Western civili­ zation like so many flares in our darkness'—-for them, as for Freud, recognition of self is the first step toward recognition of the other. “ I attack only those things against which I find no allies, against which I stand alone,” Nietzsche wrote. If such sentiments have the uncomfortable ring of a rhetoric that might be better forgotten today, this is only because the particular kind of inhumanity to which Nietzsche called attention has become so much greater, so much more dense and impenetrable, than it was in his time. What Nietzsche wrote is especially applicable to the cripple and to those men and women who inhabit, however partially, the cripple’s world. It is noteworthy that, at a time when in virtually every corner of the globe those who have been invisible to them-

0 LEONARD KRIEGEL is an assistant professor of English at the City College

of New York. He is currently lecturing at the University of Groningen in the Netherlands* He is the author of The Long W alk H om e and of numerous articles on literature and education in C om m onw eal, the N ation and D im ensions » At present, Mr. Kriegel is completing a book on Edmund Wilson. 412

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UNCLE TOM AND TINY TIM selves and to those they once conceived of as masters now stridently demand the right to define meaning and behavior in their own terms, the cripple is still asked to accept definitions of what he is, and of what he should be, imposed on him from outside his expe­ rience. In the United States alone, spokesmen for the Negro, the Puerto Rican, the Mexican, the Indian have embarked upon an encounter with a society that they believe has enriched itself at their expense, that has categorized them by cataloguing their needs and desires, their hopes and fears, their anguish and courage, even their cowardice. What all such encounters share is the challenge they offer to the very limited idea of humanity that the oppressor society grants its victims. And, however insufficiently, the society does respond in its ability to see its victims anew* Late-night tele­ vision interviewers vie with one another in the effort to titillate their viewers with “ militant” after “ militant" who rhetorically massages whatever guilt resides in the collective consciousness of white America with threats to burn Whitey’s cities to the ground. It is a game that threatens to erupt into an industry, and the nation eagerly watches while David Susskind battles Allen Burke for the privilege of leading nightly sessions of ritual flagellation— all of them, no doubt, designed to enrich the national psyche. The cripple is conspicuous by his absence from such programs. And the reason for that absence is not difficult to discover. The cripple is simply not attractive enough, either in his physical pres­ ence, which is embarrassing to host and viewers, or in his rhetoric, which simply cannot afford the bombastic luxuriance characteris­ tic of confessional militancy. If a person who has had polio, for example, were to threaten to burn cities to the ground unless the society recognized his needs, he would simply make of himself an object of laughter and ridicule. The very paraphernalia of his existence, his braces and crutches, make such a threat patently ridiculous. Aware of his own helplessness, he cannot help but be aware, too, that whatever limited human dimensions he has been offered are themselves the product of society’s largesse. Quite sim­ ply, he can take it or leave it. He does not even possess the sense of being actively hated or feared by society, for society is merely made somewhat uncomfortable by his presence. It treats him as

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THE AMERICAN SCHOLAR if he were an errant, rather ugly, little schoolboy. The homosexual on public display titillates, the gangster fascinates, the addict touches—all play upon a nation's voyeuristic instincts. The crip­ ple simply embarrasses. Society can see little reason for recogniz­ ing his existence at all. And yet, he asks, why should he apologize? My crutches are as visible as a black man’s skin, and they form a significant element, probably the most significant element, in the way in which I meas­ ure myself against the demands of the world. And the world itself serves as witness to my sufferance. A few years ago, the mayor of New York decided to “ crack down” on diplomats, doctors and cripples who possessed what he described as “ special parking privi­ leges.” I single Mr. Lindsay out here because he is the very same mayor who has acted with a certain degree of sensitivity and cour­ age when dealing with the problems of blacks in the ghettos. He soon rescinded the order preventing cripples from using their parking permits, but one notes with interest his apparent inability to conceive of what such an order would inevitably do. Cripples were instructed to drive to the police station nearest their place of work, leave their cars, and wait until a police vehicle could drive them to their destination. One simply does not have to be Freud to understand that a physical handicap carries with it certain decisive psychological ramifications, chief among them the anxiety-pro­ voking question of whether or not one can make it— economically, socially and sexually—on one’s own. Forcing a man who has great difficulty in walking to surrender his car, the source of his mo­ bility, is comparable to calling a black man “ boy” in a crowd of white onlookers. The mayor succeeded only in reminding me, and the thousands of other cripples who live in New York, that my fate was in his hands and that he controlled my destiny to an ex­ tent I did not wish to believe. He brought me once again face-toface with what Fanon means when he writes, “ Fervor is the weapon of choice of the impotent.” Fanon, of course, was writing about being black in a psychologically white world, but the an­ alogy is neither farfetched nor unusual. Uncle Tom and Tiny Tim are brothers under the skin. About six months after I arrived in the New York State Re414

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UNCLE TOM AND TINY TIM construction Home in West Haverstraw in 1944, a fellow patient, who had been in the home for more than a year, casually re­ marked, “ They got you by the hump. No matter which way you turn, they got you.” At that time, I was not yet twelve, and I took so bland an overture with all the suspicion and self-righteousness of a Boy Scout who finds himself thrust into the center of a gang war. I , for one, knew that I had been born to be saved and I was concerned only with caking the shell of my determination to suc­ ceed. I simply was not going to be a cripple. (I wouldn’t even permit myself to use the word then, not even to think it.) I was determined to do everything I had been told I must do by doctors, nurses, physical therapists, by anybody who seemed to me an au­ thority on “ my condition.” However mysteriously, I was convinced that the task of restoring nerves to my dead legs lay in obediently listening to my superiors, and I accepted anyone’s claim to super­ iority on the very simple and practical basis that he could walk. If I listened, if I obeyed without questioning, I would someday once again lead “ a normal life.” The phrase meant living in the way my superiors lived. I could virtually taste those words, and for years afterward I could be sent off into a redemptive beatitude if anybody told me that I was on my way toward leading “ a normal life.” For the cripple, the first girl kissed, the first money earned, the first restaurant entered alone— all are visible manifestations of redemption, symbolic of “ a normal life.” In my ignorance, I did not understand that my fellow patient had simply unfolded what would ultimately seem a truism. He understood something that I could not have admitted to myself, even if I had been brave enough to recognize it. My life was not my own, and it would take immense effort for me ever to control it— even to the extent that anyone not crippled can control his life. Whoever they were, they had got me, too. And no matter which way I turned, they would decide, in their collective wisdom, how my fate was to be carved out. Nor was it me as an individual cripple alone whom they had got. I was soon to discover that, in varying degrees, they had my family also. Disease is a sharing, a gray fringe of existence where man, however protesting, remains if not at his most communal, then at his most familial. For the

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THE AMERICAN SCHOLAR cripple, the message of disability is invariably personal, and he carries with the physical reminder— the eyes that do not see, the limp, the rigid fear of undergoing an epileptic seizure in some strange corner of the universe, the bitter dregs of a mind that he realizes works neither wisely nor too well— the knowledge that he is, in some remarkably fundamental way, the creator of those who have created him. Perhaps it is not what Wordsworth had in mind, but the cripple knows that the child is father to the man— and to the woman, too— , especially when that child’s existence is conditioned by the peculiar nature of his handicap. There is no choice. “ No matter which way you turn, they got you.” The crip­ ple, at least, has the immediacy of his own struggle to overcome. His parents have little more than their obligation to his birth. The cripple, then, is a social fugitive, a prisoner of expectations molded by a society that he makes uncomfortable by his very pres­ ence. For this reason, the most functional analogy for the life he leads is to be found in the Negro. For the black man, now en­ gaged in wresting an identity from a white society apparently in­ tent on mangling its own, has become in America a synonym for that which insists on the capacity of its own being. At the risk of demanding from Black America more than it can yet give itself, let me suggest that here we have both analogy and method. No one can teach the cripple, can serve as so authoritative a model in his quest for identity, as can the black man. I say this in spite of my knowledge that Black America may simply be fed up with serving the society in any manner whatsoever. “ T o us,” writes Fanon, “ the man who adores the Negro is as ‘sick’ as the man who abominates him.” It is not the black who must offer explanations. Far more than the cripple, he has been the victim of television interviewers, of scientific sociologists of the soul, of those seemingly innumer­ able bearers of “ truth,” those contemporary witch doctors intent on analyzing us all to death. For the cripple, the black man is a model because he is on intimate terms with a terror that does not recognize his existence and is yet distinctly personal. He is in the process of discovering what he is, and he has known for a long time what the society conceives him to be. His very survival guar­ antees him the role of rebel. What he has been forced to learn is 416

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UNCLE TOM AND TINY TIM how to live on the outside looking in. Until quite recently, he was not even asked how he liked it. But this has been the essential fact of the black’s existence and it is with this very same fact that the cripple must begin, for he, too, will not be asked how he likes it. He, too, must choose a self that is not the self others insist he ac­ cept. Just as Uncle Tom, in order to placate the power of white America, learned to mask his true self until he felt himself in a position of total desperation or rising hope (or some combination of the two), so the cripple has the right, one is tempted to say the responsibility, to use every technique, every subterfuge, every mask, every emotional climate— no matter how false and seem­ ingly put on— to alter the balance in his relation to the world around him. His first step is obvious. He must accept the fact that his exist­ ence is a source of discomfort to others. This is not to say that he is not permitted to live with comfort and security; these, in fact, are the very gifts his society is most willing to grant him. The price he is expected to pay, however, is the same price the black man has been expected to pay, at least until very recently: he must accept his “ condition,” which implies not that he accept his wound but that he never show more of that wound than society thinks proper. He is incapable of defining what selfhood is. His needs will be met, but not as he might wish to meet them. I was thirteen when I returned to the city after almost two years of life in a rehabilitation home. A rather valiant attempt to rehabilitate me had been made there. I had been taught a number of interesting ways in which to mount a bus; I had been taught to walk on crutches with the least possible strain on my arms. I was a rather lazy patient who lived in the corridors of his own fantasy, but I cannot deny that a great deal of effort was expended upon me by a number of people who were truly interested in my wel­ fare. Looking back, I can do little but acknowledge this and voice my gratitude. Unfortunately, those people whose task it was to rehabilitate me had also made certain assumptions about me and the world I was to inhabit after I left the home. The assumption about me was simple: I should be grateful for whatever existence I could 417

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THE AMERICAN SCHOLAR scrape together. After all, there had been a time when my life itself had been forfeit and, compared to many of my peers in the ward, I was relatively functional. About the world, the assump­ tion was equally simple—although here, perhaps, less forgivable. Society existed. Whatever it meted out to the cripple, the cripple accepted. The way of the world was not to be challenged. I did not know what to expect when I arrived back home in the Bronx, although I sensed that my relationship to others was bound to be that of an inferior to a superior. But I did not know what form that inferiority would take. No one had bothered to teach me— no one had even bothered to mention—the position I would occupy in the world outside the ward. No one had told me the extent to which I would find myself an outsider. And no one had told me about the fear, anguish and hatred that would swirl through my soul as I was reminded every day that I was a suppli­ cant. The experience that scars must be lived through before it can be absorbed. Which is why therapy can only soothe and art can create. The reality remains the thing itself. One can go so far as to suggest that the very existence of language creates a barrier be­ tween the reality the cripple faces when he returns home and what has been suggested to him about that reality. Even if those responsible for rehabilitating me had been more forthright, more honest, it would have made little difference. Only the situation it­ self could absorb my energy and interests, not a description or an explanation of that situation. Once again, the analogy to the black condition is appropriate: the first time the word nigger is hurled at a black child by a representative of white America becomes his encounter with the thing itself, the world as it is. In my own case, I was rather lucky. Looking back, withdrawal and/or paranoia seem to have been distinct possibilities, neither of which has been my fate. Perhaps what saved me was that I found myself too numbed to be shocked. There were two possible outs, which, in a sense, complemented each other. The first was to fantasize. Both fantasy and dreams are left to the cripple— and there is a great deal to be said for any possession of one’s own. The other was to compete in the world of the “ normals.” * Obviously, 41 8

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UNCLE TOM AND TINY TIM such competition was bound to be false, but it served to make the fantasies somewhat more real in that it fed my illusions of potency. I recall one incident in particular, perhaps my most vivid recol­ lection of the strange sort of humiliation I encountered. I had been arguing— I forget about what— with a friend. Enraged at something he said, I challenged him to fight. He agreed, but most reluctantly. Fighting a cripple would not reflect creditably on him in the neighborhood, but, true to the obligations of adoles­ cence, he knew that not to have accepted would be a sign of weak­ ness and sentimentality. His compromise was to insist that we wrestle on the ground. We did, and, naturally, he wound up on top of me until his mother arrived to pull him off. Although brief, the fight itself had been highly satisfying. It enabled me to forget momentarily the* fact that I was a cripple. We met if not as equals then at least as combatants on the same battleground. But then I heard his mother’s shrill scolding as she escorted him away, “ You are not to fight with a cripple!” And I knew that, once again, my vulnerability had been seen by all. It had not been a fight between two adolescents. It had been, instead, a fight between a normal and a cripple. I could live with the fight. In fact, until I heard her voice, it supplied me with an illusion of potency I would have cherished. But her words were my reality. A few months after I returned, I began going twice weekly to the Joint Disease Hospital on Madison Avenue and 124th Street. The fusion of cripple and Negro crystallized in my mind during my forays into that alien country. I like to think the Joint Disease Hospital was in Harlem by design rather than by accident. As I surveyed the dingy streets surrounding it or waited in that anti­ septic lobby, I had ample opportunity to observe the life sur­ rounding me. More than half the patients were black. And they seemed uniformly solemn, hostile, nursing a hard-core resistance to all the social workers, doctors and nurses who first-named them. While those in authority were themselves a fairly liberal mixture

*

I have taken this term from Erving Goffman’s remarkably stimulating little book,

Stigma: Notes on the Management of Spoiled Identity (Prentice-Hall, 1963 ). I would like to acknowledge also what is an obvious debt to Norman Mailer’s The White Negro,

which, like so much of Mailer’s work, forces the reader to confront himself. And I should add here that David Riesman was kind enough to read this essay and to ask me the kind of questions that I needed to be asked. 419

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THE AMERICAN SCHOLAR of black and white, the power they represented went beyond pig­ mentation. They were flesh-and-blood embodiments of society’s virtue and charity; they were ready, willing and, to the extent they were capable, eager to cure the leper of his sores, if for no other reason than that they recognized, as we lepers ourselves recog­ nized, that the world for which they stood as subalterns needed both the leper and his sores. What, after all, are faith, hope and charity to a man who claims to be civilized, except insofar as they are demonstrable and serve to create individual virtue? One some­ times wonders whether the ultimate epitaph for Western civiliza­ tion will not be, “ I gave.” On my first visit to the Joint Disease Hospital, my mother ac­ companied me. A new perspective thus unfolded: the victim as victimizer. I already knew what my getting polio had done to her. But as long as I was away from home, her weekly visits did little more than embarrass me. Here, however, her presence was a very tangible confirmation of my guilt. On the long ride from the northeast Bronx to Harlem, she had been extremely nervous. When we arrived at the hospital’s outpatient clinic, she seated herself—before the social worker assigned to interview her— with that peculiarly aggressive hesitancy so characteristic of the eastern European immigrant. She had learned that one dealt with those in power with respect, humility and firmness. After the interview, we seated ourselves as conspicuously as possible in the front row of the waiting room. All around us, people were waiting to be called into the inner sanctum, most of them staring glumly at the yellow curtains that guarded each cubicle like a mask for pain. My mother grew increasingly uncomfortable. To be the mother of a cripple, I began to understand, was to be the victim of some­ thing one simply could not understand. While I had to wrestle with my knowledge that those whose legs functioned were my su­ periors, she had to wrestle with her suspicion that she had some­ how done something to create her fate. Neither God nor his jus­ tice are blind. One received in life what one deserved. The hospital, the waiting in the lobby, the sullen faces around us, the forbidding presence of doctors and nurses gloved by a si­ lence broken only by their occasional whispers to one another— all 420

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UNCLE TOM AND TINY TIM depicted a world she was henceforth to inhabit. I myself was rela­ tively at ease. This was more or less the way things had been for two years. For my mother, it was original, a slow-motion film of what lay in wait for her, chipping into whatever sense of security she had been able to muster before we left the apartment. T o her credit, she refused to panic. When my name was finally called by the receptionist, she entered the inner sanctum and answered ques­ tions with honesty and even with pride in her capacity to endure the intimate disclosure of her suffering. Then a doctor examined me, murmured something about “ doing our best/’ and the ordeal was over. My mother glowed. It was as if she had come through some terrible ordeal, marked but not scarred. My mother did not need Harlem as I did. She knew enough about endurance; that Faulknerian virtue so apparent in those brittle streets. She came through what was, for her, an ordeal and a humiliation, and she came through far more intact than I would come through. She possessed the endurance of her instincts. And she herself was as alien to this America as anyone walking the streets of Harlem, for the kind of endurance I am speaking about here is as much a matter of geography as it is of culture. Only by existing does the black man remain black and the cripple remain a cripple. A singular, most unfunny lesson. But the cripple could profit from it. The condition of the Negro is imposed from outside. Obviously, this is not altogether true of the cripple. But while his physical condition is not imposed from outside, the way in which he exists in the world is. His relation­ ship to the community is, by and large, dependent upon the spe­ cial sufferance the community accords him. And whether he wishes to or not, the cripple must view himself as part of an undefined community within the larger community. But there is no sense of shared relationships or pride. Cripples do not refer to each other as “ soul brothers.” And regardless of how much he may desire to participate in the larger community, the cripple discovers that he has been offered a particular role that society expects him to play. He is expected to accede to that role’s demands. And just as it is considered perfectly legitimate to violate a black man’s privacy to bolster assumptions that the nonblack world makes, 421

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THE AMERICAN SCHOLAR so it is perfectly legitimate to question the cripple about virtually any aspect of his private life. The normal possesses the right to his voyeurism without any obligation to involve himself with its object. He wants the picture drawn for him at the very moment that he refuses to recognize that the subject of his picture is, like him, a human being. “ If you prick us, do we not bleed?” asks Shylock of his persecutors. The cripple's paraphrase might well be, “ If you wish to see my wound, can you deny me the right to show you my self?” But voyeurism is the normal's form of non­ involvement. The experience of being the recipient of unaskedfor attention is as common to cripples as it is to blacks. Each is asked to show those aspects of his “ condition” that will reinforce the normal’s assumptions about what the cripple (or black) feels like, what he wants, and what he is. I can remember my neighbors, on my return home, praying for me, inquiring about my health, quoting for my benefit the words of Christ, St. Francis, Akiba and F. D. R .* I can remember their lecturing me, advising me, escorting me. Drunks voluntarily shared their wisdom with me. Almost everyone did things for me —except, of course, to see me. For to have seen me would have entailed recognizing my existence as an individual me, that kind of personal encounter that results in a stripping away of stereo­ type and symbol and a willingness to accept the humanity of the other, at whatever personal cost. One can object that this view simply distorts the problem of the cripple. It is not the black man and the cripple alone who suffer from invisibility in America. The proliferation of books on alienation and anxiety, the increasing sense of disaffiliation from which our younger people suffer, the seemingly endless number of fads, pseudo religions, life sciences, and spiritual hobbyhorses that clutter the landscape of life in these United States all tes­ tify to this. Ultimately, such an objection contains great validity. But one must first see it within the particular situation in which

* Roosevelt’s ability to “beat" polio was for me, as well as for most of the boys in ward with me, what Kenneth Burke speaks of as a “symbolic action/’ Burke, of course, is dealing with literary criticism and his categories are derived from the study of litera­ ture and are all verbal. But an icon living within the boundaries of one’s memory may serve a similar function to that which Burke had in mind.

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UNCLE TOM AND TINY TIM the cripple exists: the possibilities affording relief to others are not usually open to the cripple. There is no way, of course, to define degrees of alienation and invisibility with any sense of ac­ curacy. But one can suggest that if most persons are only halfvisible, then the cripple, like the black man until recently, is wholly invisible. Stereotypes persist long after reality fades away; for us, Uncle Tom still prays on bent knees while Tiny Tim hob­ bles through the world on huge gushes of sentiment and love. But let us see the world as it is, for the world itself has perfected the ability to see what it wishes to see and only what it wishes to see. Those stolid burghers who lived only a few miles from the death camps in Germany possessed a vague idea of what was taking place within those camps, but they never permitted the vague­ ness to make itself concrete, to push itself forward onto the in­ dividual consciousness. The community, then, makes certain assumptions about the cripple. Whether verifiable or not, it behaves on the basis of those assumptions. The cripple is judged (as are the members of his family in terms of their relation to him), but the judgments are rendered by those for whom neither the cripple nor his family possess any meaningful reality. His “condition” is an abstraction; he himself is not quite real. Who is going to recognize me? asks the cripple. But society has already called into question the very existence of that me for it refuses to look at that which makes it uncomfortable. And so it leaves the cripple, doubting his potency, not quite ready to face his primary obligation— to extend under­ standing to himself, to accept the fact that his problems exist now, here, in this world, that they are problems for which relief must be sought, and that his “ condition” is arbitrary but not absolute. Choices, as well as obligations, exist within the boundaries of his possibilities. T o strike out on his own in the face of a society whose smug­ ness seems, at times, conspiratorial is difficult. As an attitude, smugness goes beyond indifference. And it is far more harmful. Smugness is the asset of the untouched, the virtue of the oblivious, and the badge of the unthreatened. It is the denial of the exis­ tence of that which threatens one’s comfort, the right to judge

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THE AMERICAN SCHOLAR whatever and whenever the smug believe judgment is called for. Smugness is the constant reminder of the line that exists between those who have not been touched by the world’s terror and those who have. Smugness is a denial of the motion of the universe, an assumption that time stands still and that mortality itself can be conquered. The cripple knows better; for him, it is time and motion together that form the dialectic of rage. What the cripple must face is being pigeonholed by the smug. Once his behavior is assumed from the fact that he is a cripple, it doesn’t matter whether he is viewed as holy or damned. Either assumption is made at the expense of his individuality, his ability to say “ I.” He is expected to behave in such-and-such a way; he is expected to react in the following manner to the following stimulus. And since that which expects such behavior is that which provides the stimulus, his behavior is all too often Pavlovian. He reacts as he is expected to react because he does not really accept the idea that he can react in any other way. Once he accepts, however unconsciously, the images of self that his society presents him, then the guidelines for his behavior are clear-cut and consistent. This is the black man’s conflict, too. And it is exactly here that black militancy has confronted the enmity of white society. White America is probably willing to absorb the black American; what it may not be willing to do is to permit the black American to ab­ sorb himself. Negro anxiety, rage and anger are seen only as threats to the primacy of white America when they probably should be seen as the black man’s effort to rid himself of all sorts of imposed definitions of his proper social “ role.” The black view must be total. Given the experience of having been born black in a white world, it is difficult for the black man to think about his life in terms other than color or race. The totality of his experi­ ence gives him no edge. And what he witnesses is forced into the mold of what he has known. I once received an essay from a black student describing Canova’s Perseus Holding the Head of Medusa in the Metropolitan Museum of Art as a depiction of “ the con­ temporary black crisis.” When I questioned what she had seen, I discovered that most of the other black students in the class be-

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UNCLE TOM AND TINY TIM lieved that one had the right, perhaps even the obligation, to see that statue and everything else in terms of “ the black crisis.” If one calls this confusion, it is a confusion that the cripple shares. For one thing, the cripple is not sure of just who is and who isn’t his enemy; for another, he must distrust the mask of language just as the black man does; for a third, he cannot help but see the world itself as the source of his humiliation. He is “ different” at the very moment he desires to be created in an­ other’s image. And he must feel shame at the expression of such a desire. If anything, his situation is even more difficult than the black’s, at least as far as his ability to find relief is concerned. If the black man’s masculinity is mangled, he can still assert it in certain ways. Black actors assuage his hunger for a heroic identity; black athletes help him forget, however temporarily, the mutila­ tion of his being; and a worldwide renascent political movement, convinced that it represents the wave of the future, teaches him that his blackness— the very aspect of his existence that he has been taught to despise— is “ beautiful” and is to become the foun­ dation of the new life he will create for himself. Whether this assessment of his situation is accurate is of no immediate concern, for what we are interested in is its validity as an analogy for the life of the cripple. Black Americans now be­ lieve that they possess choices and that they need not live as vic­ tims. They are now engaged in the struggle to force society to ac­ cept, or at the least to accommodate itself to, the black conception of how blacks are to live. The cripple’s situation is more difficult. If it exists at all, his sense of community with his fellow sufferers is based upon shame rather than pride. Nor is there any political or social movement that will supply him with a sense of solidarity. If anything, it is probably more difficult for the cripple to relate to “ his own” than to the normals. Louis Battye, an English novelist born with muscular dystrophy, has graphically expressed how the cripple sees himself not merely as the symbol of what society thinks he is but of what he actually is.

Somewhere deep inside us is the almost unbearable knowledge that the way the able-bodied world regards us is as much as we have the right to expect. We are not full members of that world, and the vast

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THE AMERICAN SCHOLAR

majority of us can never hope to be. If we think otherwise we are de­ luding ourselves. Like children and the insane, we inhabit a special sub-world, a world with its own unique set of referents. Battye also speaks of the cripple’s “ irrelevance to the real business of living.” His observations are acute and courageous. One sus­ pects that most cripples feel this about themselves, although few have the courage to admit it. A cripple must see himself as an anachronism, for virtually everything his culture offers him is de­ signed to reinforce his sense of inferiority, to point out to him that he is tolerated in spite of his stigma and that he had best keep his distance if he wishes society’s approval. But Tiny Tim is, with whatever modern variations, still his image. He may insist that Tiny Tim is not his true self. But it frames society’s picture of him. It is still the model for his behavior. Self-hatred, then, must be the legacy he derives from his con­ sciousness of what society thinks of him. With what else can he confront a society that values physical strength and physical beauty? (Regardless of how bizarre that sense of beauty may some­ times seem, it remains outside the cripple’s range of possibilities.) If growing old is a threat to modern Americans, how much greater a threat is physical deformity or mental retardation? And what are the cripple’s options? Most of the options tra­ ditionally available to the “ gifted” or “ exceptional” Negro are not available to him, since his restrictions are almost invariably functional and rather severely limit the territory he can stake out as his own. He cannot become a movie idol; he cannot become an athlete; he cannot even become a soldier and risk his life in de­ fense of that which has rejected him. His choices are simply far more limited than are the choices of a black man. But what he can do is to learn one of the fundamental lessons of American Negro history, a lesson that probably accounts for the growing tension between white and black: he can create his own individual presence out of the very experience of his rejection. The black man in America is an obvious model for him, not be­ cause of any inherent Faulknerian virtue but because he has spent three hundred and fifty years learning how to deal with his tor­ mentors. Without romanticizing him, we recognize that he has 426

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UNCLE TOM AND TINY TIM earned his status. It has made him, at one and the same time, both tougher and more paranoid than white America. And a certain amount of toughness as well, perhaps, as a certain amount of paranoia might serve to change the cripple’s own conception of self. There is no formula that can force T iny Tim to stand on his own two crutches. But the cripple can certainly make a start by refusing the invisibility thrust over him by the culture. He can insist on being seen. In the folklore of white America, Harlem has long been con­ sidered exotic as well as dangerous territory. Perhaps it is both exotic and dangerous. But from 1946 to 1951, the years during which I was an outpatient at the Joint Disease Hospital, it was one of the more comfortable places in New York for me. I do not mean to voice that old ploy about those who themselves suffer being more sympathetic, more receptive to the pain of others (al­ though there is probably a certain limited truth here, too). All I mean is that in Harlem I first became conscious of how I could outmanipulate that in society which was trying to categorize me. It is probably a slum child’s earliest lesson, one that he learns even before he sets foot in a school, for it is a lesson that carries with it the structure of his survival. Normals begin to appear not as par­ ticularly charitable human beings but rather as individuals able to band together for purposes of mutual self-interest. They possess their environment, and the environment itself (which for the black child and for the cripple is part of the enemy’s world) is for them a visible symbol of their success. The normals are a tangible presence in Harlem, or at least they were during my tenure as an outpatient at the Joint Disease Hospital. The normals are they, the people in authority— police for the black child, nurses, doctors and social workers for me. It was in this confrontation with the normals that I first noticed what is now called the Negro’s “ marginality” to the kind of exist­ ence the rest of America is supposed to lead. On the short strolls I took on my crutches through the streets surrounding the hospital, the single fact I constantly confronted was the way in which the non-Harlem world imposed its presence on the community. Indi­ viduals walking the streets simply froze in its presence. One was 427

Disability Rights

THE AMERICAN SCHOLAR always aware of a potential breaking out, an explosion of amassed raw frustration and distorted energy. I can remember stiffening with tension when a patrol car cruised past. Now it must be re­ membered that I was white, that I was an adolescent, that I moved with great difficulty on braces and crutches, and that I was prob­ ably the last person in Harlem who had anything to fear from the police. But none of this changed the fact that in Harlem a patrol car was simply the most decisive presence of the normals one could conceive of—and whether it was because I felt com­ fortable in those streets or because the air smelled differently or because the tension that seemed to surround me was part of the very manner, the very life, of the community, I remember stiffen­ ing with fear and guilt and anxiety. Had I been a black adolescent with legs that functioned, I probably would have run, assuming my guilt as a corollary of my birth. Just as such a boy was a victim, so I knew that I was already a victim: the truth was that I was al­ ready on short-term loan to the needs of the outside world. I could exist as an individual only insofar as I could satisfy those needs. At least, this is what I had absorbed. For anything else, I would have to struggle. And at that time (I was not yet sixteen), I was not only not smart enough to resist but I still had fantasies of leaving the world of the cripple. That, too, was part of the legacy. T o choose hope rather than despair is natural enough. But it had been five years since the embrace of my virus and I still could not bring myself to admit that my condition was permanent. The cripple’s struggle to call himself I, which is, I take it, what we mean by a struggle for identity, is always with him. He can be challenged in his illusions of sufficiency by the most hap­ hazard event. I used to drop into a drugstore across the street from the Joint Disease Hospital while I waited for the car that was to take me back to the Bronx. It was the kind of drugstore one still saw before i960. Despite its overstuffed dinginess, perhaps even because of it, the drugstore seemed portentously profes­ sional. Somehow, its proximity to the hospital gave it a certain dignity. The man who ran its operations was short and heavy, courteous and solicitous. I remember that his hair was thinning and that he smoked cigarettes in a manner that made smoking it428

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UNCLE TOM AND TINY TIM self seem an act of defiance. He would occasionally join me as I sat at the counter drinking coffee and, more often than not, he would inform me of what the Negro wanted. I have an image of him, smoke blowing through flared nostrils, staring at the door as he spoke. At such times, he seemed oblivious to the presence of black customers and the black counterman alike. “ They want to be accepted. They would like the white man to give them a chance to show what they can do.” I had heard the words for years and I could even nod in rhythmical agreement. And then one day he added, in a voice as casual and well-intentioned as when he told me what they wanted, “ Why don’t you plan to get your­ self a nice store? Like a greeting card store. Or something like that. Where you don’t have to work so hard but you could still earn your own living. That’s what you should do.” And so I learned that I existed for him as an abstraction, that he saw through me as if I, too, were smoke he was blowing through his nostrils. The cripple had been linked to the Negro. A new they had been born. As a man of the world, who did not need to move beyond abstraction, he assumed that he had every right in the world to decide what the cripple or the Negro wanted. He knew what I “ should do” because he possessed two good legs and I didn’t. Not being a cripple makes one an expert on the cripple, just as not being black makes one an expert on the Negro. It was another example of the normal deciding how that which dared not to be normal should live. In his conclusion to Black Skin, White Masks, Fanon discovers that the final myth he must destroy is the myth of a “ black world,” for such a myth is ultimately dependent upon an equally inhuman “ white world.” “ There are,” Fanon insists, “ in every part of the world men who search.” This seems to me one of the few workable visions one can accept, despite the fact that I know that, for the cripple, even the act of surrendering himself to the ranks of those who search is enveloped by potential disaster. The cripple must recognize this and he must face it. For no matter how limited his functioning in the society of normals may be, there are certain definitive guidelines that he is offered. Once he has accepted being pigeonholed by society, he finds that he is safe as long as he is

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THE AMERICAN SCHOLAR willing to live within the boundaries of his categorization. To break out of its confines calls for an act of will of which he may already be incapable. Should he choose to resist, he will probably discover that he has inflamed those who see themselves as kind and tolerant. My inability to tell that man to mind his own busi­ ness was an act of spiritual acquiescence. Had I told him where to get off, I would have undoubtedly been guilty of an unpardonable sin in his eyes. But I would have moved an inch forward toward personal emancipation. Cripples, though, simply did not address normals in such a way. T iny Tim was still my image of the cripple. And Tiny Tim had always been grateful for the attention con­ ferred upon him by his betters—any kind of attention. My in­ ability to defy that man was more than a reflection of my weak­ ness: it was also the embodiment of his success, the proof of the legitimacy of his assumption. On my next visit to the Joint Disease Hospital, I dropped in once again for another cup of coffee and another quick chat. And so the task of the cripple is to re-create a self, or rather to create a true self, one dependent upon neither fantasy nor false objectivity. To define one’s own limitations is as close as one can come to meaningful independence. Not to serve is an act of cour­ age in this world, but if it leaves one merely with the desire for defiance then it ultimately succumbs to a different form of mad­ ness. The black man who rejects “ white culture” must inevitably reject his own humanity, for if all he can see in Bach or Einstein is skin color then he has become what his tormentors have made of him. The only true union remains with those “who search.” For the cripple, too, there are no others. To embrace one’s braces and crutches would be an act of the grotesque; but to permit one’s humanity to be defined by others because of those braces and crutches is even more grotesque. Even in Dachau and Buchenwald, the human existed. It was left to the searchers to find it.

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Part II Law of Disability Rights

[6]

International Disability Law—A New Legal Subject on the Rise: The Interregional Experts’ Meeting in Hong Kong, December 13-17, 1999 by Dr. Theresia Degener* i.

I n t r o d u c t io n

Disability law has not been a field of legal research and teaching at many universities in the United States nor has it been widely acknowledged in other countries around the world. In North America and most European countries, the issue of disability as a subject of law has commonly been included in social security and welfare legislation, health law or guardianship law. Thus, disabled persons have been depicted not as subjects of legal rights but as objects of wel­ fare, health and charity programs. The underlying policy has been to segregate and exclude people with disabilities from mainstream society, sometimes pro­ viding them with special schools, sheltered workshops, special housing and transportation. This policy has been deemed just because disabled persons were believed incapable of coping with both society at large and all or most major life activities. Fortunately, when some countries made attempts to take a more integrative and inclusive approach to disability policy, major legal reforms resulted. At­ tempts to open up employment, education, housing, and goods and services for persons regardless of their disabilities have changed the understanding of disa­ bility from a medical to a social category. A key element of this new concept is the recognition that exclusion and segregation of people with disabilities do not logically follow from impairments, but rather from political choices based on false assumptions about disability. Inaccessibility problems do not so much re* Visiting lecturer and researcher at the University of California at Berkeley School of Law (Boalt Hall); Professor of Law, Administration and Organization at the University of Applied Sci­ ences, Bochum, Germany (Evangelische Fachhochschule Rheinland-Westfalen-Lippe). First Legal State Exam (J.D. equivalent), Johann Wolfgang Goethe-University, Frankfurt am Main, Germany, 1986; LL.M., Boalt Hall, 1990; Dr.iur., Johann Wolfgang Goethe-University, 1992; Second Legal State Exam, Hesse, Germany, 1993. I would like to thank Shawn Gould for his marvelous editorial help. I would also like to thank the members of BJIL who inspired me to write this report. Finally, I wish to thank Jenny Kern who has been a valuable discussion partner.

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suit from mobility, visual, or hearing impairments, but instead are a corollary of a political decision to build steps but not ramps, to provide information in printed letter version only or to exclude sign language or other forms of commu­ nication. Instead of viewing disability as the individual’s problem, the focus has shifted to the environment and society as a whole and to the lack of considera­ tion for human differences. II. Disability as a H u m a n

R ig h t s

Issue

With the paradigm shift from the medical to the social model of disability,1 disability has been reclassified as a human rights issue. Law reforms in this area are intended to provide equal opportunities for disabled people and to combat their segregation, institutionalization and exclusion as typical forms of disabil­ ity-based discrimination. With the evolution of civil rights legislation for dis­ abled persons, such as the Americans with Disabilities Act (hereinafter ADA), the legal paradigm shifted from welfare law towards civil rights law. This new dimension of disability law has been welcomed as a major milestone on the path toward the eventual recognition of human rights of disabled people, an example more and more governments seem to be willing to follow.2 What remains unclear, however, is the scope of change. If the now under­ mined assumption that disability is a medical problem anchored much of the older welfare disability law, should government replace it with what we now call civil rights legislation? Do we still need benefits that were given as com­ pensation for exclusion? What are the legal consequences of replacing the so­ cial model of disability with the medical model? Of course, this touches upon the delicate question of how to distribute resources in society. Then, too, the issue is closely connected with another question that affects the outcome of law reforms in disability. law, the principle of equality. The principle, one of the most fundamental human rights, is relational: equality for disabled people raises questions, such as compared to whom, to what extent, and under which circumstances? Is it enough to open the doors to education, em­ ployment, and political participation or do we need to help everyone get inside? Have we helped everyone get inside if schools, job premises, and public build­ ings are accessible but public transportation is not? Is it enough to prohibit invidious disability discrimination in employment or do we need to ensure that more subtle or even “good will” forms of discrimination are covered?3 Is it enough to allow some disabled people to live outside institutions or do we need to ensure that everyone gets out?4 Have we achieved equality if disabled work1. There is a large body of literature on this subject. See, e.g., V ic t o r F in k e ls t e in , A t t i ­ tu d e s a n d D is a b le d P e o p le : I ss u e s f o r D is c u s s io n (1980); M ic h a e l O liv e r , T h e P o li t ic s o f D is a b le m e n t (1990); M ic h a e l O liv e r , U n d e r s ta n d in g D is a b ility ; F ro m T h e o r y t o P r a c t ic e (1996); J e n n y M o r r is, P r id e A g a in s t P r e ju d ic e (1991).

2. See Implementation of the World Programme of Action Concerning Disabled Persons: Report by the Secretary General, U.N. GAOR, U.N. Doc. A/54/388 (1999). 3. For example, should we include sheltered employment? 4. See, e.g., Olmstead v. L.C. ex rel Zimring, 527 U.S. 581 (1999).

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ers receive the same salary as non-disabled co-workers, but have to spend sixty percent of their salary on personal assistance services that the non-disabled em­ ployees do not need? III. E quality C oncepts

While there is consensus about the fundamental nature of the equality prin­ ciple in domestic as well as in international law, the interpretation of this princi­ ple varies. The three main ways of understanding equality are as (1) formal or juridical equality, (2) equality of results, and (3) equal opportunity or structural equality.5 Juridical equality prohibits direct discrimination and aims at shifting the focus of a potential discriminator away from a characteristic such as race, gen­ der, disability, or sexual orientation. Since it is deemed arbitrary to legitimize unequal treatment of such a characteristic, juridical equality requires ignoring the differences. This concept meets the demands of disability rights activists who try to overcome the medical model of disability, and it underlines the no­ tion that disability is not the problem. To achieve equality, however, disability does have to be taken into account when it comes to providing access to accom­ modations such as architectural changes or program adjustments. Granting equal access to all members of various societies requires taking a look at the differences that exist among these members. Martha Minow has pointed to the moral policy dilemma of dealing with human differences such as disabilities.6 To ignore differences helps to prevent stereotypes and stigmatization but at the price of failing to do justice to the reality of difference. Taking difference into account does justice to the reality of difference but at the potential price of per­ petuating false assumptions about the nature of difference. Second, equality of results essentially examines disability with an outcomeanalysis. Thus, according to equality of results, disabled workers who receive equal pay but have an unequal burden regarding their personal needs are dis­ criminated against. At the core of this way of understanding equality stands the human rights theory that all human beings are of equal value and of equal human dignity. As there can be no justification for inherently equal beings to own common resources unequally, this theory legitimizes the demand for equal allocation of resources. Equality of results poses some thorny problems, however. The principle must first tackle the question of responsibility. Who is responsible for meeting 5. See Gerard Q uinn, The Human Rights of People with Disabilities Under EU Law, in T h e EU a n d H u m a n R ig h ts 281, 290 (P hilip A lston ed ., 1999). O ther equ ality con cep ts w ith resp ect to

The Significance of Equality and Non-Discrim­ ination for the Protection of the Rights and Dignity of Disabled Persons, in H u m a n R ig h ts a n d

d isab ility la w h a ve b een described b y A art H endriks,

D is a b le d P e r s o n s : E s s a y s a n d R e le v a n t H u m a n R ig h ts I n s tr u m e n ts 40-62 (T h eresia D egener & Y o la n K o ster-D reese, ed s., 1995); and L is a W a d d in g to n , D is a b ilit y , E m p lo y m e n t a n d t h e E u r o p e a n C o m m u n ity 53-66 (1995). 6. See M a r th a M in o w , M a k in g A l l t h e D if fe r e n c e : I n c lu s io n , E x c lu s io n , a n d A m eri­ c a n L a w 19-79 (1990).

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these needs? Is it the State or the private sector? Second, equality of results might require a strong welfare state, which may interfere with the ideology of a free market system. At the same time equality of results may perpetuate injus­ tice because its focus is on results more than on treatment. Segregated education for disabled students, for example, might be deemed legitimate if special schools for disabled students would provide the same educational opportunities and de­ grees as regular schools. To put it bluntly, if we accept equality of results as the sole way of understanding equality, mainstreaming disabled students into regu­ lar schools might be an illegitimate goal. The third way in which to view equality, equal opportunity, is less rigid than the other two concepts in that it provides equal chances but not results. In this way, equal opportunity is more compatible with the market economy. It looks at the history of group discrimination and identifies traditional or classic forms of discrimination. The equal opportunity paradigm sees both stereotypes and structural barriers as obstacles to inclusion; one must ignore disability if stereotypes are the basis for action, but must consider it if changing the environ­ ment or social life in order to grant genuine access and inclusion. The key term for the latter is providing “reasonable accommodation,” which was developed in the United States in the 1970s.7 Since then it has been adopted around the world, though rephrased in some countries.8 The concept of equal opportunity is currently the most frequently applied equality concept in modem disability legislation. One reason behind this might be that this equality concept is the most compatible with the free market econ­ omy, which is now the global economic model. Since civil rights legislation provides equal opportunities for underrepresented groups or minorities, it opens the gates for those who have not been able to participate in the market. In the absence of non-discrimination legislation there will always be instances in which the operation of the free market will produce unsatisfactory results for persons with disabilities, either individually or as a group. Thus, the concept of equal opportunity for all also aims to change the notion of the capitalist market. This latter goal might explain why those who have not been the beneficiaries of the market economy in the past support this intermediate model of equality. IV. N

ational a n d

In t e r n a t i o n a l D e v e l o p m e n t s

The reform process in disability law has been going on in all parts of the world. The United States and Canada were the first countries to adopt antidiscrimination laws and other human rights legislation for persons with disabili­ ties, starting with scattered equality provisions in various areas of the law in the 7. See U .S . C o m m issio n o n C iv il R ig h ts , A c c o m m o d a tin g t h e S p e c tr u m o f I n d iv id u a l A b ilitie s (1 9 8 3 ); G e r a r d Q u in n e t a l , D is a b i lit y D is c r im in a tio n L a w in t h e U n ite d S t a t e s , A u s t r a l ia a n d C a n a d a (1 9 9 3 ). 8. For instance, the term “adjustments” instead of “accommodations” is used in U .K . law. See B r ia n J. D o y le , D is a b ilit y D is c r im in a tio n : T h e N e w L a w (1996).

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1970s and following with more comprehensive laws in the 1990s.9 The 1990s in particular was a banner decade for disability law; more than twenty nations en­ acted disability discrimination laws during this period.10 New equality laws for disabled persons have emerged at the national as well as at the supranational and international level. Today we have binding and non-binding declarations of in­ ternational human rights explicitly for disabled persons that have been adopted by the General Assembly of the United Nations.11 At the regional level, the Organization of American States and the European Union have passed strong equality legislation on disability.12 Major driving forces behind these legal changes have been national disabil­ ity rights movements, which seemed to have been able to learn quickly from each other as well as cooperate among themselves at the international level. Due to the scarcity of comparative law and international disability law publica­ tions, legal research has accompanied the reform process predominantly with respect to national laws.13 V. In t e r r e g i o n a l E x p e r t s ’ M U

p to the

e e t i n g in

H

ong

B erkeley M

K

o n g as a

Fo l l o w

eeting

The Interregional Seminar and Symposium on International Norms and Standards Relating to Disability, which took place December 13-17, 1999 in Hong Kong (Special Administrative Region), People’s Republic of China, was 9. The landmark law being the ADA of the United States. See Americans with Disabilities Act of 1990, 42 U.S.C. § 12101 (1999). In Canada the 1982 Canadian Charter of Rights and Free­ doms and the 1985 Human Rights Act contain anti-discrimination provisions for disabled persons. See C a n . C o n s t . (Constitution Act, 1982) pt. I (Canadian Charter of Rights and Freedoms); The Canadian Human Rights Act, R.S.C., ch. H-6, § 1 (1998) (Can.). 10. See, e.g., Disability Discrimination Act (1992) (Austl.); Aus. Const, art. 7 (1997); Law of the People’s Republic of China on the Protection of Disabled Persons (1990); Law on Equal Oppor­ tunities for Persons with Disabilities (1996) (Costa Rica); Fin. Const. § 5 (1995) (now Fin. Const. § 6 (2000)); Code p £ n a l arts. 225, 416-14 (Fr.); Grundgesetz [constitution] art. 3(3) (F.R.G.); Disability Discrimination Ordinance, Cap. 487 (1995) (H.K.); Act XXVI on Provision of the Rights of Persons Living with Disability and their Equality of Opportunity (1998) (Hung.); The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act (1995 (No. 1 of 1996)) (India); Employment Equality Act of 1998, Equal Status Bill of 1999 (Ir.); Equal Rights for People with Disabilities Law, 5758 -1998 (Isr.); Act Relating to Employment Promotion, etc. of the Handicapped, Law No. 4219 (1990) (S. Korea); Human Rights Act of 1993 (N.Z.); Republic of Malawi (Constitution) Act of 1994, chap. IE, sec. 13 (g); Magna Carta for Disabled Persons (Repub­ lic Act No. 7277) (1991) (Phil.); Disability Discrimination Act (1995) (U.K.); S. Afr. Const. § 9 (1996); Protection of the Rights of Persons with Disabilities Act, No. 28 of 1996 (Sri Lanka); Law on the Prohibition of Discrimination Against Persons With Disabilities in Employment, SFS No. 1999-132, (1999) (Swed.); Uganda Const, chap. IV, sec. 21(2) (1995); Disabled Persons Act of 1992 (Zimb.). 11. See infra Part VI. 12. See infra Part VIE. 13. See, e.g., Q u in n , supra note 7; D is a b ilit y , D iv e r s -A b ility a n d L e g a l C h a n g e (Melinda Jones & Lee Ann Basser Marks eds., 1999); W a d d in g to n , supra note 5; H u m a n R ig h ts a n d D is a b le d P e r s o n s : E s s a y s a n d R e le v a n t H u m a n R ig h ts I n s tr u m e n ts , supra note 5; M a r g e H a u r itz e t a l , J u s t ic e f o r P e o p le w it h D is a b ilitie s : L e g a l a n d I n s t it u t i o n a l I s s u e s (1998); Quinn, supra note 5; Marcia Rioux, The Place of Judgement in a World of Facts, J. I n t e l l . D is a b il­ it y R e s., Apr. 1997, at 102-11.

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one of the first attempts to create a forum for international disability law. The Equal Opportunities Commission of Hong Kong organized the Hong Kong Sem­ inar in cooperation with the Centre for Comparative and Public Law, Faculty of Law, University of Hong Kong; the United Nations' Division for Social Policy and Development was a sponsor. Hong Kong was an appropriate location for the meeting for two reasons. Much like the United Nations Decade on Persons with Disability (1983-92),14 the years 1993 until 2002 were declared the Asian and Pacific Decade of Dis­ abled Persons.15 In addition, Hong Kong has one of the most far-reaching antidiscrimination laws for disabled persons in this region. The Disability Discrimi­ nation Ordinance (hereinafter DDO) of 1995 prohibits disability-based discrimi­ nation in the private and public sphere and covers such significant areas as education, employment, housing, sports, access to premises and the provision of goods and services.16 The DDO is one of only three pieces of anti-discrimination legislation in Hong Kong17 and has a strong monitoring body, the Hong Kong Equal Opportunities Commission (hereinafter EOC), which is eager to break new ground in the elimination of discrimination.18 Nearly fifty experts in law and disability policy from all regions of the world participated in the Hong Kong meeting, which was intended to promote awareness and understanding of the existing human rights framework for per­ sons with disabilities. Another goal was to provide a forum to examine critically the current international legal and policy initiatives relating to persons with disabilities. The Hong Kong meeting was a follow up to a smaller meeting that con­ vened a year earlier at Boalt Hall Law School, University of California at Berke­ ley (hereinafter Boalt Hall). In December 1998, fifteen international experts in law and policy analysis participated in an Expert Group Meeting on Interna­ tional Norms and Standards Relating to Disability convened by the United Na­ tions, in cooperation with Boalt Hall and the World Institute on Disability.19 The Berkeley expert meeting identified priority areas for further research and action in international disability law and policy.20 Specifically, the priority areas 14. See Implementation of the World Programme of Action Concerning Disabled Persons and the United Nations Decade of Disabled Person, G.A. Res. 44/70, U.N. GAOR, 44th Sess., Supp. No.

49, at 191, U.N. Doc. A/44/49 (1990). 15. E.S.C.A.P. Res. 48/3, U.N. ESCOR, Supp. No. 11, at 113, U.N. Doc. E/1992/31-E/ESCAP/889 (1992). 16. Disability Discrimination Ordinance, Cap. 487 (1995) (H.K.). 17. The others are the Sex Discrimination Ordinance, Cap. 480 (1995) (H.K.) and the Family Status Discrimination Ordinance, Cap. 527 (1997) (H.K.). 18. It handled more than 1,200 complaints within the first three years and had a success rate of 66%for cases that proceeded to conciliation. See Equal Opportunities Commission, Statistics (vis­ ited Apr. 4, 2000) . 19. The World Institute on Disability is a nonprofit public policy center of and for people with disabilities based in Oakland, CA. 20. The report can be viewed at United Nations, Report of the United Nations Consultative Expert Group Meeting on International Nonns and Standards to Disability (visited Apr. 3, 2000) .

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included comparative legal research, research on implementation of domestic and international laws, and research on the role of the judiciary. The Hong Kong meeting set out to build upon the Berkeley findings and to work on three main subjects, organized into the following clusters: Cluster One, international norms and standards relating to disability; Cluster Two, capacity building to promote and monitor the implementation of norms and standards for persons with disabilities; Cluster Three, approaches to definitions of disability. While Cluster One was the most interesting with respect to the development of international disability law, Clusters Two and Three addressed significant as­ pects of this evolving area of law. I shall mention their contents briefly here. Cluster Two focused on the role of disability rights organizations in the implementation of international and regional human rights instruments. Just as in most areas of human rights law, the role of non-governmental organizations (hereinafter NGOs) is immensely important. While national governments theo­ retically bear the legal duty to implement international human rights law, in reality, they rarely accomplish human rights promotion and protection. Without the work of international and national human rights NGOs, the status of human rights law today would be far from where it is now.21 Disability rights organiza­ tions only recently entered the international human rights movement and, while impressive actions have been taken,22 a need for training in human rights advo­ cacy among disability rights NGOs remains. Cluster Two thus focused on pilot training in this area, which was facilitated by a special purpose Internet site 23 Cluster Three concentrated on the long standing issue of defining disability, which has been the quest for different disciplines such as medicine, biology, sociology and law for centuries. The legal definition of disability determines whether a medical or a socio-political model of disability is fostered. Partici­ pants reviewed a number of definitions of disability found in national and inter­ national laws, which generally fell into two categories. The first emphasized individual deficits of disabled persons, thus evoking the medical model of disa­ bility. The second category focused on the social, economic, political and legal barriers that result in disability, similar to the social model of disability. Partici­ pants also reviewed the current revision process of the International Classifica­ tion of Impairments, Disabilities and Handicaps (hereinafter ICIDH), which the World Health Organization (hereinafter WHO) first adopted in 1980.24 Disabil­ ity rights experts have criticized this definition as being too medical-centered 21. See Irw in C otier, Human Rights as the Modem Tool of Revolution, in H u m a n R ig h ts in t h e T w e n ty -F ir s t C e n t u r y : A G l o b a l C h a lle n g e 7-20 (K ath leen E. M ahoney & P aul M ahoney ed s., 1993); H e n r y J. S t e in e r & P h ilip A ls t o n , I n t e r n a t i o n a l H u m an R ig h ts in C o n te x t: L a w , P o lit ic s , M o r a ls 456 (1996).

22. For a recent impressive investigation into the situation of incarcerated mentally ill persons, see Michael Winerip, The Global WiUowbrook, N.Y. T im es M a g ., Jan. 16, 2000, at 58-67. 23. See WorldEnable, An Internet Accessibility Initiative (visited Apr. 3, 2000) . 24. See W o r ld H e a lt h O r g a n iz a tio n , I n t e r n a t i o n a l C la s s if ic a t io n o f Im p airm en t, D is a b ilitie s a n d H a n d ic a p s (1980).

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and too focused on the individual. In July 1999, the WHO published ICIDH-2,25 which is currently being tested in the field. Participants concluded that legal definitions of disability serve different purposes and that there thus cannot be one overall definition of disability. For example, a medical definition may be appropriate if one's purpose is clinical care or personal care benefits. However, if the goal is to ensure human rights, the medical model would not be adequate because it most likely results in limit­ ing the rights of disabled persons. In any event, participants recommended that persons with disabilities and their organizations play a central role in any deci­ sion-making process about definitions. Having briefly summarized the work of Cluster Two and Cluster Three at the Hong Kong meeting, I shall now return to Cluster One, international norms and standards relating to disability, as the focal point for the rest of this article. VI. O verview

of

In t e r n a t i o n a l L a w s R e l a t i n g

to

D isabled Pe r s o n s

Despite being one of the largest minority groups in the world, encompass­ ing 600 million persons (of which two out of three live in developing countries), disabled people have been rather ignored during the first three decades of the United Nations’ existence. The drafters of the International Bill of Human Rights did not include disabled persons as a distinct group vulnerable to human rights violations. None of the equality clauses of any of the three instruments of this Bill, the Universal Declaration of Human Rights (1948) (hereinafter UDHR), the International Covenant on Civil and Political Rights (1966) (herein­ after ICCPR), and the International Covenant on Economic, Social and Cultural Rights (1966) (hereinafter ICESCR), mention disability as a protected cate­ gory.26 If disability is addressed as a human rights issue in these documents, it is only in connection with social security and preventive health policy.27 Only in the 1970s, with the promulgation of the Declaration on the Rights of the Mentally Retarded Persons (1971)28 and the Declaration on the Rights of Disabled Persons (1975),29 did persons with disabilities become subjects of human rights declarations. Even these early instruments reflect a notion of disa­ bility within the medical model, according to which disabled persons are prima­ rily seen as persons with medical problems, dependent on social security and 25. See W o r ld H e a lt h O r g a n iz a tio n , IC ID H -2 : I n t e r n a t i o n a l C la s s if ic a t io n o f F u n c ­ tio n in g a n d D is a b ilit y (1 9 9 9 ).

26. See Universal Declaration of Human Rights, G.A. Res. 217, U.N. Doc. A/810, at 71 (1948); International Covenant on Economic, Social and Cultural Rights, G.A. Res. 2200A, U.N. GAOR, 21st Sess., Supp. No. 16, at 49, U.N. Doc. A/6316 (1967); International Covenant on Civil and Political Rights, G.A. Res. 2200A, U.N. GAOR, 21st Sess., Supp. No. 16, at 52, U.N. Doc. A/ 6316 (1967). 27. See Universal Declaration of Human Rights, art. 25, G.A. Res. 217, U.N. Doc. A/810, at 71 (1948); International Covenant on Economic, Social and Cultural Rights, art. 12, G.A. Res. 2200A, U.N. GAOR, 21st Sess., Supp. No. 16, at 49, U.N. Doc. A/6316 (1967). 28. G.A. Res. 2856, U.N. GAOR, 26th Sess., Supp. No. 29, at 93, U.N. Doc. A/8429 (1972). 29. G.A. Res. 3447, U.N. GAOR, 30th Sess., Supp. No. 34, at 88, U.N. Doc. A/10034 (1976).

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welfare and in need of segregated services and institutions. It was also during this time that the General Assembly affirmed that the “other status” phrase of the equality provisions of the International Bill of Human Rights covered dis­ abled persons.30 Throughout the 1970s and the 1980s, the General Assembly of the United Nations passed a number of resolutions that led to the 1982 World Programme of Action Concerning Disabled Persons (hereinafter WPA), the guiding instru­ ment for the United Nations Decade of Disabled Persons 1982-1993.31 The first two goals of the WPA, prevention and rehabilitation, reflected a more tradi­ tional approach to disability law and policy; the third goal, equalization of op­ portunities, set the path for change at the international level. Equalization of opportunities is defined as: the process through which the general system of society, such as the physical and cultural environment, housing and transportation, social and health services, edu­ cational and work opportunities, cultural and social life, including sports and rec­ reational facilities are made accessible to all.32

Throughout the decade, the equal rights component of disability policy and law became the main target of the emerging international disability rights movement. Other major events that helped to shift the paradigm from the medical to the human rights model of disability were two thematic reports, one on human rights in the field of mental health and one on human rights violations with regard to disabled persons; the United Nations Commission on Human Rights prepared both.33 These reports were the first to recognize disability as a thematic subject within the human rights division of the United Nations, which in turn helped in regarding disabled persons not only as recipients of charity measures but as subjects of human rights (violations). While one report resulted in a non­ binding international human rights instrument protecting disabled persons in in­ stitutions,34 the outcome of the other has been rather poor. No significant follow-up activities were taken under the auspices of the U.N. Commission of Human Rights. While other significant guidelines and standards were adopted during the decade,35 the proposal for a binding treaty on the human rights pro30. For a more comprehensive analysis see Hendriks, supra note 5. 31. G.A. Res. 37/52, U.N. GAOR, 37th Sess., Supp. No. 51, at 185, U.N. Doc. A/37/51 (1983). 32. World Programme of Action Concerning Disabled Persons: Report of the Secretaiy-Gen­ eral, Addendum at 21, U.N. GAOR, U.N. Doc. A/37/351/Add. 1 (1982). 33. See Principles, Guidelines and Guarantees for the Protection of Persons Detained on Grounds of Mental lU-Health or Suffering from Mental Disorder: Report by the Special Rapporteur, Mrs. Erica-Irene Daes, U.N. Sub-Commission on Prevention of Discrimination and Protection of Minorities, U.N. Doc. E/CN.4/Sub.2/1983/17; Human Rights and Disabled Persons, U.N. Centre for Human Rights, U.N. Sales No. E.92.XIV.4 (1993). 34. See The Protection of Persons with Mental Illness and the Improvement of Mental Health Care, G.A. Res. 46/199, U.N. GAOR, 46th Sess., Supp. No. 49, at 188, U.N. Doc. A/46/49 (1992). 35. See, e.g., The Talline Guidelines for Action on Human Resources Development in the Field of Disability, G.A. Res. 44/70. U.N. GAOR, 44th Sess., Supp. No. 49, Annex, at 196, U.N. Doc. A/ 44/49 (1990).

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tection of disabled persons did not find majority support within the General As­ sembly in 1987. As a compensatory alternative, the General Assembly adopted the non­ binding U.N. Standard Rules on the Equalization of Opportunities for Persons with Disabilities (hereinafter StRE) in 1993.36 The StRE firmly build on the WPA and clearly accentuates equality, now defined as follows: The principle of equal rights implies that the needs of each and every individual are of equal importance, that those needs must be made the basis for the planning of societies and that all resources must be employed in such a way as to ensure that every individual has equal opportunity for participation. Persons with disa­ bilities are members of society and have the right to remain within their local communities. They should receive the support they need within the ordinary structures of education, health, employment and social services.37

In contrast with other non-binding international disability instruments, the StRE have a Special Rapporteur and a panel of experts who have the mandate to promote and monitor the implementation of the rules. The panel of experts con­ sists of ten representatives of the six major international non-governmental orga­ nizations in the disability field.38 The reports reflect a clear human rights approach in monitoring performance, although the monitoring body is placed under the auspices of the United Nations Commission for Social Development instead of the Commission on Human Rights.39 VII. Protection U

nder

G e n e r a l H u m a n R i g h t s In s t r u m e n t s

Increasingly, NGOs that focus on disability have an impact on how tradi­ tional human rights norms are interpreted and implemented as well as on how modem human rights instmments are designed.40 While disability was a forgot36. See Standard Rules on the Equalization of Opportunities for Persons with Disabilities, G.A. Res. 48/96, U.N. GAOR, 48th Sess., Supp. No. 49, at 202, U.N. Doc. A/48/49 (1994) [herein­ after Standard Rules]. For comment, see Theresia Degener, Disabled Persons and Human Rights: The Legal Framework, in H u m an R ig h ts a n d D is a b le d P e r s o n s , supra note 5, at 9-39, and Bengt Lindqvist, Standard Rules in the Disability Field -A New United Nations Instrument, in H u m a n R ig h ts a n d D is a b le d P e r s o n s , supra note 5, at 63-68. 37. Standard Rules, supra note 36, f ][ 24-27, at 204. 38. The organizations were as follows: Disabled Peoples’ International, Inclusion Interna­ tional, Rehabilitation International, World Blind Union, World Federation of the Deaf and World Federation of Psychiatric Survivors and Users.

39. See Monitoring the Implementation of the Standard Rules on the Equalization of Opportu­ nities for Persons with Disabilities: Report of the Special Rapporteur of the Commission for Social Development, U.N. GAOR, U.N. Doc. A / 50 / 374, Annex (1995) (first report); The Implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities: Final Report of the Special Rapporteur of the Commission for Social Development, U.N. GAOR. U.N. Doc. A/52/56, Annex (1996) (second report); Monitoring the Implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities: Final Report of the Special Rapporteur of the Commission for Social Development on Monitoring the Implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities on His Second Mission, 1997-2000, U.N. Economic and Social Council, U.N. Doc. E/CN.5/2000/3 (1999) (third report); see also Dimitris Michailakis, The Standard Rules: A Weak Instrument and a Strong Com­ mitment, in Disability, Divers-ability and Legal Change, supra note 13, at 117, 119, and 130.

40. While the focus is here on the human rights division of the U.N., it should be mentioned that the Special Agencies such as WHO, ILO or UNESCO have also taken an equal opportunity

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ten category when the ICCPR and the ICESCR were drafted, these treaties are currently interpreted in a way that supports the human rights approach to disabil­ ity. General Comment No. 18 to the ICCPR, which deals with the right to equality (ICCPR art. 25), is a clear statement that the concept of formal equality does not apply. It affirms that equal treatment does not always mean identical treatment and that States have a duty to take steps to eliminate conditions that perpetuate discrimination.41 The Committee on Economic, Social and Cultural Rights went even further and adopted a General Comment on how to interpret and implement the ICESCR with respect to persons with disabilities 42 General Comment No. 5, which the committee adopted in 1994, is the only legal U.N. document to date that broadly defines disability-based discrimination: Both de jure and de facto discrimination against persons with disabilities have a long history and take various forms. They range from invidious discrimination, such as the denial of educational opportunities, to more “subtle” forms of discrim­ ination such as segregation and isolation achieved through the imposition of phys­ ical and social barriers. For the purpose of the Covenant, “disability-based discrimination” may be defined as including any distinction, exclusion, restriction or preference, or denial of reasonable accommodations based on disability which has the effect of nullifying or impairing the recognition, enjoyment or exercise of economic, social or cultural rights 43

The Comment also emphasizes the human rights approach to disability by in­ cluding a clear demand for anti-discrimination legislation: “In order to remedy past and present discrimination, and to deter future discrimination, comprehen­ sive anti-discrimination legislation in relation to disability would seem to be indispensable in virtually all States parties.”44 In a similar vein, the Committee on the Elimination of Discrimination Against Women has adopted General Recommendations that ask State parties to include specific information on the status of disabled women,45 and has ad­ dressed the issue of disability in other thematic recommendations 46 approach to disab ility in recen t years. As a strong binding instrum ent, IL O C on ven tion No. 159, C on ven tio n C on cerning V o c a tio n a l R ehab ilitation and E m p loym en t (D isa b led P erson s), 1983, is w orth m en tion in g. See Convention No. 159: Convention Concerning Vocational Rehabilitation and Employment (Disabled Persons), in I n t e r n a t io n a l L a b o r O r g a n iz a tio n , 2 I n t e r n a t io n a l L a ­ b o u r C o n v e n tio n s a n d R e c o m m e n d a tio n s 1919-91 (1992). For an o v erv iew o f th e sp ecialized a g en cies see T heresia D egen er, Disabled Persons and Human Rights: The Legal Framework, supra n o te 36, at 20-33.

41. See General Comment No. 18, Report of the Human Rights Committee, U.N. GAOR, 45th Sess., Supp. No. 40, at 175, U.N. Doc. A/45/40 (1990). 42. See Philip Alston, Disability and the International Covenant on Economic, Social and Cultural Rights, in H u m an R ig h t s a n d D is a b le d P e r s o n s : E s s a y s a n d R e le v a n t H u m a n R ig h ts I n s tr u m e n ts , supra note 5, at 94-105. 43. General Comment No. 5 (1994): Persons with Disabilities, U.N. ESCOR, Supp. No. 2, at 102, f 15, U.N. Doc. E/1995/22 (1995). 44. Id. 16. 45. See General Recommendation No. 18, Report of the Committee on the Elimination of Dis­ crimination Against Women, U.N. GAOR, 46th Sess., Supp. No. 38, at 3, U.N. Doc. A/46/38 (1992). 46. See, e.g., General Recommendation No. 24, Report of the Committee on the Elimination of Discrimination Against Women, U.N. GAOR, 54th Sess., Supp. No. 38, at 6, f 25, U.N. Doc. A/54/ 38/Rev. 1 (1999).

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More recent human rights treaties, such as the International Convention on the Rights of the Child, include specific provisions concerning persons with dis­ abilities that reflect a strong human rights approach.47 VIIL R egional D

evelopments

At the regional level, three laws are worth mentioning in the context of promotion of human rights of persons with disability. In Europe, both the Council of Europe as well as the European Community have taken steps to ameliorate the fact that disabled persons long had the status of invisible citizens 48 The 1996 revision of the European Social Charter (here­ inafter ESC) displays a departure from the one-dimensional welfare approach taken in 1961 when the ESC was adopted. Article 15 of the revised ESC con­ tains a clear commitment to equal opportunities for disabled persons: “The right of persons with disabilities to independence, social integration and participation.”49 The European disability movement within the legal framework of the Euro­ pean Community has moved further and more firmly towards anti-discrimina­ tion. At the 1996 inter-governmental conference held to revise the European Treaties, a new article (art. 13) was included in the Treaty Establishing the Euro­ pean Community.50 This article gives the Community the ability to take action to combat discrimination on a number of grounds, including disability. The new provision is significant in that it embraces the human rights or social model of disability and that it recognizes that disability discrimination exists.51 Within the Inter-American system, a very recent development has been the adoption of the 1999 Inter-American Convention on the Elimination of All Forms of Discrimination Against Persons with Disabilities (hereinafter IACPWD). While it does not contain individual rights, it is the first regional treaty to define disability-based discrimination. Article 1 (2) states: (a) The term “discrimination against persons with disabilities” means any distinc­ tion, exclusion, or restriction based on disability, record of disability, condi­ tion resulting from a previous disability, or perception of a disability, whether present or past, which has the effect or objective of impairing or nullifying the recognition, enjoyment, or exercise by a person with a disability of his or her human rights and fundamental freedoms. (b) A distinction or preference adopted by a state party to promote the social integration or personal development of persons with disabilities does not con47. For a discussion of art. 23 of the United Nations Convention on the Rights of the Child, see Thomas Hammerberg, The Rights of Disabled Children-The UN Convention on the Rights of the Child, in H u m an R ig h ts a n d D is a b le d P e r s o n s , supra note 5, at 147-58. 48. See Lisa Waddington, The European Community's Response to Disability, in D is a b ility , D iv e r s - a b ilit y a n d L e g a l C h a n g e , supra note 13, 139-53; Quinn, supra note 5. 49. European Social Charter, Europ. T.S. No. 163. However, the medical model has not been clearly abandoned when it states that sheltered employment should be provided if mainstream em­ ployment “zs not possible by reason of the disability ’’(emphasis added). Id. art. 15(2). 50. See Treaty Establishing the European Community, Nov. 10, 1997, O.J. (C 340) 1 (1997). 51. For details see Waddington, supra note 48, at 148; Quinn, supra note 5, at 312.

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stitute discrimination provided that the distinction or preference does not in itself limit the rights of persons with disabilities to equality and that individu­ als with disabilities are not forced to accept such distinction or preference. If, under a state’s internal law, a person can be declared legally incompetent, when necessary and appropriate for his or her well being, such declaration does not constitute discrimination.52

IX. C r i t ical R e v i e w

of

In t e r n a t i o n a l D H

ong

K

ong

M

isability

N

o r m s at the

eeting

Participants of Cluster One of the Hong Kong meeting noticed that disabil­ ity rights NGOs had successfully countered the myths so long associated with the welfare model of disability, prompting a pragmatic shift away both from the view that disability is a condition that requires a cure and from the resulting policies of institutionalization and exclusion. The current international legal framework encompasses a new understanding whereby living with a disability is something for society to accept and accommodate. While the Cluster One members recognized the critical fact that the major part of international disability rights law is “soft law” with no binding obliga­ tions for States parties to the United Nations, they deemed these numerous in­ struments significant for at least two reasons. First, these instruments should be viewed as vital tools in crafting strategies to advance the disability agenda lo­ cally, nationally and internationally. Second, these soft instruments are valuable interpretations of broad treaty obligations of relevance to disabled people and have the potential to contribute to the corpus of customary international law in the field of disability rights. In this regard, the participants welcomed treaties that address disability, such as General Comment No. 5 to ICESCR. It was recommended that other treaty bodies consider the adoption of similar comments on the application of their respective treatment, taking into account the existing jurisprudence of other treaty and charter-based bodies. Participants agreed that placing international disability rights within the human rights division rather than in the social devel­ opment division of the United Nations is important, and they recommended that the Commission on Human Rights reinforce the importance of the disability issue through various actions. While participants acknowledged that the first human rights reports on mental health and on disability were appropriate first steps, they deemed more in-depth investigations of systematic and individual violations of the human rights of persons with disabilities necessary. Consider­ ing the scarce resources allocated to the investigation of human rights violations against disabled women, Cluster One participants recommended that the Special Rapporteur on Violence Against Women of the Commission on Human Rights 52. Inter-American Convention on the Elimination of All Forms of Discrimination Against Persons with Disabilities, A.G. Res. 1608, 29th Sess., O.E.A. Doc. OEA/Ser. P AG/doc.3826/99 (1999). For the period prior to the new treaty see Instituto Interamericano de Derechos Human o s , Los D erechos Humanos de l a Personas con D iscapacidad (Rodrigo Jimenez ed., 1996).

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consider taking up the issue of violence against disabled women as a theme for a detailed study in one of her future annual reports. Furthermore, participants considered the adoption of the first regional antidiscrimination convention on disability rights and expressed their agreement that this represented a success for the disability movement in the Inter-American region. Concerns were nonetheless expressed that the definition of discrimina­ tion in this treaty excluded declarations of incompetence. Advocates empha­ sized that in many cases, persons with mental disabilities are declared incompetent without the due process protections guaranteed under international human rights law. Participants reached consensus on supporting the treaty with the proviso that ratifying States enter a reservation with respect to these declara­ tions of incompetence. Participants of Cluster One, however, did more than recognize progress in the development of international human rights norms. The experts also paid attention to certain legal developments in the field of bioethics, because of their potentially adverse effects on disability rights. In particular, Cluster One re­ viewed the new European Convention on Human Rights and Biomedicine, adopted by the Council of Europe in 1997,53 from a disability rights perspective. Article 17(2) of this treaty allows non-therapeutic medical experiments to be performed on persons unable to give their informed consent.54 This result was seen as incompatible with article 7 of the ICCPR55 and the Nuremberg Code of 1947.56 Another drawback was seen in the fact that the Statute for the International Criminal Court (hereinafter ICC) fails to address the rights and concerns of dis­ abled victims, whereas it protects other groups such as children and women. In response, the participants suggested that an additional protocol on disability sup­ plement the statute of the ICC. A new

X. International Treaty o n Disability?

A major portion of the debate focused on the desirability of a new interna­ tional treaty on the rights of persons with disability. Participants recognized that States are reluctant to adopt yet another special human rights treaty. The con­ cern is that the abundance of existing human rights treaty obligations has created a “treaty fatigue” because Member States are already burdened by and unable to fulfill their existing reporting obligations.57 53. See European Convention on Human Rights and Biomedicine, Europ. T.S. No. 164. 54. See id . art. 17(2). 55. See International Covenant on Civil and Political Rights, G.A. Res. 2200A, U.N. GAOR, 21st Sess., Supp. No. 16, at 52, U.N. Doc. A/6316 (1967). 56. For the text of the Code, see T h e N a z i D o c t o r s a n d t h e N u r e m b e r g C o d e 2 (George J. Annas & Michael A. Grodin eds., 1992). 57. For more on this problem of human rights implementation see S te in e r , supra note 21, at 559.

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However, participants cited six principal arguments in favor of a new treaty on disability rights. First, a new treaty would be a significant advance in the creation of binding law. In contrast, the current international standards represent a regime that is little more than a “toothless tiger” when it comes to actual human rights advocacy. Second, a new treaty would result in claims for addi­ tional attention and resources within the human rights division of the United Nations, on governments and on other organizations. Third, a treaty on disabil­ ity rights would provide an opportunity to add specific content to the human rights of persons with disabilities and address hitherto unexplored areas, such as the right to be different. In light of recent developments in the area of bioethics and biomedicine concerning the right to be different, participants felt that this right might be as fundamental as the right to equality for persons with disabili­ ties.58 Fourth, a new treaty would also provide disability rights organizations with the opportunity to promote human rights for persons with disabilities in domestic contexts. Fifth, a new treaty would be a catalyst for empowering and mobilizing the global disability rights movement. Finally, the adoption of a dis­ ability treaty would place the disability agenda squarely within the United Na­ tions human rights program. Thus, this step would underscore the fact that disability was primarily a human rights rather than a social welfare issue. The debate ended with a clear statement that the United Nations, member States and disability rights organizations should initiate the process for the adop­ tion of an international treaty dealing specifically with the human rights of dis­ abled persons. However, participants also felt a strong desire to formulate three guiding principles that should be observed. First, the process of drafting any new treaty should be open, inclusive and representative of the interests of all persons with disabilities. Second, disabled persons must be principal partici­ pants in the drafting of any new treaty at all stages of the drafting process. Finally, any new treaty must neither dilute any existing international provisions on disabled person’s rights nor undermine any national disability standards that provide a higher level of protection of rights. XI. C onclusions

The Interregional Seminar and Symposium on International Norms and Standards Relating to Disability in Hong Kong gave evidence that international disability rights is an emerging area of law. Experts from over fifty countries exchanged experiences about current law reforms in disability issues that all seem to follow a certain trend, namely moving from welfare law to civil rights for persons with disabilities. While important aspects such as comparative disa­ bility law and the role of the judiciary in implementing disability law reforms were not discussed in depth, participants presented some interesting examples of 58. For more on this issue see Degener, supra note 36, at 36; Katarina Tomasevski, The Right to Health for People with Disabilities, in H u m an R ig h ts a n d D is a b le d P e r s o n s : E s s a y s a n d R e le v a n t H u m a n R ig h ts I n s tr u m e n ts , supra note 5, at 131-46.

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domestic disability law. A significant number of countries seem to have modeled their modem disability discrimination legislation on the American with Disabilities Act and its predecessors.59 Then, there were countries like Uganda who chose different paths for par­ ticipation and inclusion for disabled persons. The 1995 constitution of Uganda contains equal rights provision for disabled persons in section 21(2) and section 35.60 Based on these provisions, the Uganda legislature adopted some impres­ sive laws according to which a certain number of seats in elected political bodies at all levels are allocated for people with disabilities. More than 1800 disabled persons have been elected since then, including five persons with disabilities as members of the federal parliament.61 The Hong Kong meeting only briefly addressed the role of the judiciary. Experts seemed to be less enthusiastic with respect to the role of judges in disa­ bility law reforms. The shared experience was that judges tend to adhere to the medical model of disability and perpetuate prejudices about disabled persons. A rather eccentric example discussed was a 1993 decision of a German district court.62 The Flensburg Court decided that German travel agencies have to pay damages to non-disabled tourists who feel disturbed and disgusted by the pres­ ence of disabled tourists in their hotel.63 The Hong Kong meeting provided a long needed forum for disability rights activists and international lawyers to discuss human rights of disabled persons. While it would have been laudable to have a higher representation of disabled experts at the meeting, international disability law gained momentum as a field of research and practice.

59. On the U.K. law see B r ia n J. D o y le , D is a b i lit y D is c r im in a tio n : T h e N e w L a w (1996). B efore the Irish disab ility discrim ination law s w ere adopted, com parative legal research w as under­ taken. See Q u inn , supra n o te 7. F or A sia and the P a cific see U n ite d N a tio n s , E c o n o m ic a n d S o c i a l C om m ission f o r A s ia a n d t h e P a c ific , L e g is la t io n o n E q u a l O p p o r tu n itie s a n d F u l l P a r tic ip a tio n in D e v e lo p m e n t f o r D is a b le d P e r s o n s : E x a m p le s f o r t h e E S C A P R e g io n

(1997). 60. See U g a n d a C o n s t . §§ 21(2), 35, available at (visited Apr. 4, 2000). 61. This is according to an interview between the author and Jenny Kern, an attorney from Berkeley, CA, who interviewed Andrew Wonsolo, then the director of the National Union of Dis­ abled People in Uganda, during an exploratory trip to Uganda in 1998. The National Union is the umbrella national policy making organization for disabled people in Uganda. 62. Amtsgericht Flensburg, Urteil vom 27.08.1992 - 63 C 265/92, 46 N e u e J u r is tis c h e W o c h e n s c h r ift 272, (1993). 63. See id.

[7] The Development of the Disability Rights Movement as a Social Problem Solver Jerry Alan Winter Allyn Professor Emeritus of Sociology Connecticut College

Abstract A sociological overview of the development of the rights movement is provided. The movement arose to combat the oppressive marginalization of persons with disabilities. It sought both to empower them to take control of their own lives and to influence social policies and practices to further the inclusion of individuals with disabilities into the societal mainstream. It developed in three phases. In the first phase, a definition of both what the problem is and of what its sources are, was offered. In the second, a consensus was established and acted upon as to a collective solution to the problem. In the third phase, it responded to the aftermath of new policies and practices. Keywords: disability rights movement,

marginalization,

oppression

This paper provides a sociological overview, based on the work of Fuller & Myers (1941), Blumer (1971), Mauss (1975) , and Spector & Kitsuse (1977), of the development of a particular social movement, the disability rights movement in the United States. Of course, the United States is but one of the many countries in which such a movement has arisen (See: Charlton 1998; Newell 1999; Cooper 1999; Jayasooria 1999; Hayashi and Masako, 2001; and Gottlieb, 2001). As with many social movements, the disability rights movement arose to offer solutions to a social problem, viz., the oppressive marginalization of persons with disabilities. Its solution is basically, albeit not entirely, twofold. First, to empower persons with disabilities to take control of their own lives; and, second, to influence social policies and practices so as to further "the integration and full inclusion of individuals with disabilities into the mainstream of American society," as is now put in federal law (amended Rehabilitation Act of 1973, Title VII, Chapter 1, Section 701). The disability rights movement, while by no means a monolith, is one whose slogan may well be that cited by Charlton, "Nothing about us without us," an expression he traces (1998: 3) to an international disability rights conference. In sum, then, disability rights movements seeks to replace oppression with

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Disability Rights empowerment, and, marginalization with full inclusion. As with the development of any social movement, that of the disability rights movement can be said to develop in phases (Fuller & Myers 1942, Blumer 1971, Mauss 1975: 57-70, and Spector Sc Kitsuse 1977) . In particular, the disability rights movement can be said to entail three phases: 1) definition of the problem; 2) solutions; and 3) aftermath. In the first phase, the movement offers a definition of the problem which involves a statement of both what the problem is, and what its sources are. In the second phase, a consensus is established and acted upon that not only is something wrong, but that something ought to be done about it on a collective, not individual, basis. Generally, the second phase can be said to end with the enactment of appropriate law, i.e., law which seeks to redress the grievances identified by the movement and legitimates solutions it supports. Indeed, the "volume and depth" of such appropriate laws may well be, as Mauss (1975:70) suggests, "the most important indicator of the 'success' of a social problems-movement." Nevertheless, the second phase may also spawn solutions involving non-governmental organizations as well. In the case at hand, the disability rights movement, the first two phases entail the establishment of a consensus that without the protection of the law, persons with disabilities will be subject to an oppressive marginalization; and that the adoption of new public policy and practices are needed to eliminate, or at least reduce, the problem. It also spawned the Independent Living Movement. Unfortunately, even years after the successful conclusion of its second phase, social movements often find problems have been more often ameliorated than solved. Moreover, solutions to old problems can bring new problems in their wake. There is, then, a third phase of a social movement, that of dealing with the aftermath of new policies and practices. The aftermath generally involves dealing with both remnants of the old problem, e. g., some oppressive marginalization remains, and new problems, that arise out of conditions created by the solution, perhaps, including a backlash seeking a return to the status quo ante. For example, affirmative action attacked discriminatory college admissions practices, but, in its wake, came questions about the abilities of the students admitted as a result of affirmative action. Consequently, in some places, notably California, affirmative action itself came to be seen as a problem to be eliminated. Of course, the development of a social movement may be uneven. Calls for governmental action may come before there is a clear understanding of the problem the action is to solve. Some, for example, would argue that those who call for school vouchers paid for by the state or federal government have not shown how vouchers will help and/or that the state of American schools warrants such "drastic" action. In sum, a sociological analysis of the development of a social movement need not be a social history of its development. What follows, then, is a sociological, but, not necessarily a chronological, analysis of the disability rights movement. Phase I: Definition of the Problem

Disability Rights As indicated above, a social movement seeking the solution of a social problem will develop an understanding of the problem and sources. That is, the movement will define the problem by explaining both what it thinks is wrong, and what it regards as the sources of the problem (see: Fuller & Myers 1941, Blumer 1971, and Spector & Kitsuse 1977: 130-158). In the case of the disability rights movement, the problem is that persons with disabilities are marginalized and, consequently, oppressed. The sources of these problems, as with related problems such as racism and sexism, are said to be both constituted on a personal or interpersonal level and constructed by institutional practices (Oliver 1990: 82-83). That is, from the standpoint of the disability rights movement, the oppressive marginalization of persons with disabilities is, in part, rooted in the prejudices or misconceptions, but, also, in the good intentions, in the minds of persons without a disability as they are manifest in their interactions with persons with disabilities. However, it is also rooted and constructed by the dominant or hegemonic ideas and practices, which Berger & Luckmann (1966: 45) term a "plausibility structure". Such a structure provides for unobtrusive control of the premises upon which decisions are rendered plausible and, thus, acceptable (see: Perrow 1986 12 8-130). That is, the dominant ideas and practices, the plausibility structure, by virtue of its control over the definition of the situation of persons with disabilities, enables otherwise decent people to adopt policies and programs which they regard as reasonable, plausible, but, which the movement views as a major source of the oppressive marginalization of persons with disabilities. Consequently, "the oppression of people with disabilities does not [always] derive from a backward set of attitudes." To the contrary, "it is the product of [the] dominant culture" which even though often well-meaning, nevertheless, "marginalizes people" with disabilities (Charlton 1998: 82). Marginalization and Oppression In its first phase, the disability rights movement, as noted above, defined the claim that persons with disabilities are: 1) subject to marginalization; and 2) are, consequently, oppressed. In this phase, then, marginalization was first identified and its oppressive nature exposed. And in order to understand the problems encountered by persons with disabilities, the disabilities rights movements makes important distinctions between: 1) impairment and disability, and, 2) stigmatization and marginalization. The disability rights movement generally accepts the definitions of "impairment" and "disability" offered by UPIAS (Union of the Physically Impaired Against Segregation 1976: 14 as quoted in Barton 1998: 56). Specifically, "impairment" is the condition of a person "lacking part or all of limb, organ or mechanism of the body." "Mechanisms of the body" may be sight, hearing or some higher cognitive function such as reading. "Disability" is "the disadvantage or restriction of activity caused by a contemporary social organization which . . . excludes [people with physical impairments] from participation in the mainstream of social activities." Social organization is here understood as a combination of the prevailing mode of doing things, the social structure, and

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Disability Rights the prevailing ideas of what is right, normal or otherwise appropriate behavior, the normative structure. The social structure refers to how things are done; the normative order, to how they ought to be done. The social structure and/or the normative order may reflect not only prevailing wisdom, but prevailing prejudices and stereotypes. In any case, where floors above the ground floor of a building can be reached by use of a stairway, the use of stairs is part of the social structure as well as that of the building's physical structure. Where use of any other means of entry is seen as improper or inappropriate sloth, use of the stairs may also be part of the normative order. Where elevators are widely available in addition to stairs and an acceptable mode of entry to upper floors, then using stairs may not be part of either the social structure or the normative order. Furthermore, paraplegia, which is an impairment in any case, is rendered a disability only where elevators are not available or their use frowned upon. The distinction between impairment and disability is made very clear in the classic study of the place of deaf people in the mainstream of the towns of West Tisbury and Chilmark, Massachusetts (Groce 1985). In these towns, there were many people who were congenitally deaf. However, since everyone in these towns spoke sign language, they were not disabled, they were not excluded from the mainstream of social activities in their respective towns. Conversely, left-handedness may be a disability where, as was noted in recent testimony before New York City's city council (Bumiller 2000: B 4 ) , door handles, bannisters, guard rails, or a computer mouse, are designed for right-handed people. However, it is not an impairment as no "limb, organ or mechanism of the body" is lacking. Social attitudes may also exclude individuals from the mainstream of society and, thus, disable them. Left-handed people were once suspect. The term "sinister" derives from the Latin for "on the left hand" (Urdang 1968: 1228). And teachers used to do their utmost to encourage, even require, left-handed students to write with their right hand. Clearly, then, the status of a particular condition may change over time. Poor eyesight and the consequent use of corrective lenses is a case in point. That is, "spectacles are [now] a necessary aid for many with a visual impairment, but they have been so 'normalized' that wearing glasses [or contact lenses] is no longer regarded as a mark of a disabled person . . ." (Barnes, Mercer & Shakespeare 1999: 25). "Impairment," then, is a physical or biological condition, including, of course, cognitive impairment. "Disability," is a social condition, part and parcel of the prevailing social organization. While certainly desirous of the elimination of both impairments and of disabilities, the disability rights movement focuses on the latter. In addition to the distinction between impairment and disability, the understanding of the disability rights movement is also informed by the distinction between stigmatization and marginalization. Stigmatization is the process whereby an individual comes to be viewed as having "an attribute [a stigma] that is deeply discrediting" (Goffman 1965: 4). "The central feature of the stigmatized individual's life . . . is a question of . . . 'acceptance.' Those who have dealings with him[/her]

Disability Rights fail to accord him[/her] the respect and regard which" would otherwise be their due (Goffman 1965: 8). Marginalization is the process whereby one is kept outside, on the margins of, activities in the mainstream of one's society. It is a process which denies one effective "citizenship . . . resources . . . [and] access to education, employment, housing and other areas of . . . life" (Williams 1998: 17). In short, a marginalized person is excluded from the mainstream of the polity and economy of his/her society. Moreover, marginalization deprives one of autonomy over one's life. Stigmatization and marginalization are each a process which works to exclude persons with impairments from participation in the mainstream of social activities. Each, then, is a process which disables people. The essential difference between the two is that stigmatization generally occurs in the realm of primary groups, those involving face-to-face interpersonal encounters such as with family, friends, between neighbors or informal groups in an otherwise formal work setting where interaction "is typically spontaneous, informal and personal" (Michener & Delamater 1999: 318). Marginalization generally occurs in the realm of secondary groups, those in which interactions "tend to be formal, impersonal and non-spontaneous" (Michener & DeLamater 1999: 318) such as in a bureaucracy. Moreover, marginalization generally refers to one's relationship to the economy and the polity of one's own society. Thus, in a marginalized world, "employers turn away qualified and competent workers simply because they are disabled" (Hunt 1998: 14). It is also a world in which public policy concerning people with disabilities is established, e.g., at school board meetings, without their participation in the policy making process; a world, in which with respect to people with disabilities, much about them is indeed done without them. While the disability rights movement would prefer that people with disabilities are neither stigmatized nor marginalized, given its primary concerns with the exercise of economic and political rights, the rights to a job and to having a voice, the rights to autonomy, self-sufficiency (independence) and self-determination, it has "not found stigma a helpful or useful concept." The analysis of stigmatization focuses on primary or interpersonal relations, and not on political or economic rights (Oliver 1990: 68). The movement, then, focuses on marginalization. The goal of the disability rights movement is, then, the elimination, or at least amelioration, of the disabling marginalization of persons with impairments, and, thereby, to empower them to influence social policies and practices so as to further the integration and full inclusion of individuals with disabilities into the mainstream of American society. Concomitantly, it is to facilitate their taking control of their own lives. That is, the goal is to enable persons with disabilities to be productive, contributing citizens who "choose a way of life that confronts all the options and risks throughout . . . life that are inherent to living in, rather than outside [on the margins of] society" (Brisenden 1998: 26). Thus, the m o v e m e n t 's goal is to create a society in which persons with disabilities can truly say, "we are able to take responsibility for our own lives, . . . do not need or want [others] to manage

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Disability Rights our affairs; we best understand what is best for us; we . . . control our own organizations and programs and influence . . . government funding, public policy, and economic enterprises that directly affect us" (Charlton 1998: 128). In order to attain its goal, then, the movement has sought, first to explain why marginalization is oppressive, and, then, to identify its root source. From the standpoint of the disability rights movement, the right and ability to exercise autonomy over one's own life is the basic, defining, characteristic of what it means to be human. Marginalization (and, for that matter, stigmatization) is, therefore, oppressive. It is dehumanizing in that it deprives persons with disabilities of their autonomy, their ability both to make their own meaningful choices, free of unwarranted constraint, and to carry them out. Furthermore, since, as indicated above, marginalization precludes one from confronting the risks that are inherent in living a life and the failures that selecting a poor risk can bring, it is oppressive. "Without the possibility of failure, the disabled person lacks . . . the ultimate mark of humanity, the right to choose for good or evil" (DeJong 1983: 20). The disability movement, then, can be seen as an "incarnation of an old theme in American life the idea of self-help" or autonomy (Zola 1983: 49). "There has," as Varela (1983: 48) observes, "always been someone, somewhere fighting against laws, attitudes and practices that restrict personal autonomy," and are, thereby, oppressive. To succeed in the fight against such oppression, the movement needed to demonstrate that the oppression of persons with disabilities is "related to an ideology or group of ideologies which justify and perpetuate" it (Abberley 1967: 7). That is, to succeed as a social movement, the disability rights movement had to identify the ideas which exert unobtrusive control over the premises defining the issues which concern them. It needs to do so because these controlling ideas constitute a structure of policy and practice, i.e., a plausibility structure which renders it plausible for ordinary, well-intentioned people to accept and put into practice ideas which the movement regards as oppressive. The disability rights movement has generally identified the medical or rehabilitative model of disability as the main basis for regarding impairment, and, the ensuing disability, as a personal tragedy rather than as a the result of social oppression. Thus, the medical or rehabilitative model makes it plausible, through control of premises as to the nature of being disabled, for otherwise well-intentioned people to see as acceptable what the movement regards as oppressive, viz., the marginalization of people with disabilities as people in need of individual care and not as people in need of collective efforts to ensure their rights as citizens. The Medical Model as an Oppressive Plausibility Structure The focus of the medical model is, of course, on impairment, the physical or biological condition of people with disabilities. Moreover, the medical model views impairment as a condition which can be, and, more importantly, ought to be repaired, after which the individual may be rehabilitated and returned to "normal life," or as close to it as possible. In other words, the medical

Disability Rights model treats a person with an impairment as one would a person with a illness such as measles. Consequently, the medical model calls for a person with an impairment/disability to act as a sick person or patient is expected to act, that is, to assume the "sick role." The "sick role," as described in Parsons' classic description (1951: 436-437) consists of four components. The first two provide a sick person with "privileges and exemptions" (Parsons 1951: 437; see also Crewe et a l . 1983: 17). These exemptions are: 1) "the exemption from normal . . . responsibilities . . . relative to the nature and severity of the illness [or impairment];" and 2) the exemption from moral accountability for the illness [impairment] (Crewe et al p. 17). That is, there is no expectation that one can take care of oneself and nor is there the expectation that one can do what needs to be done. The second exemption provides "a bridge to the acceptance of 'help'" (Parsons 1951: 437). Indeed, given the second two components of the sick role, the "acceptance of 'help'11 becomes obligatory. The last two of the four components of the sick role identified by Parsons define the obligations which a "sick" or impaired person is expected to assume in order to preclude abusing his/her privileges and exemptions. Specifically, the impaired (sick) person is: 1) obligated "to want to 'get well'" and to define "being ill as itself undesirable" (Parsons 1951: 437); and 2) obligated "to seek technically competent help, . . . [usually] that of a physician and to cooperate with him[/her] in . . . trying to get well" (Parsons 1951: 437). As a consequence of these obligations, the impaired, or so-called sick person, is expected to view being impaired (sick) as "an unfortunate state . . . to get out of as expeditiously as possible" (Parsons p. 437) . In other words, the "sick role is intended to be a temporary one" (Crewe et a l . 1983: 17) of dependency on the medical profession to ameliorate or cure. The medical model, then, constitutes a plausibility structure, a set of policies and procedures, whose implicit premises, namely, those defining the privileges and obligations of the sick role, unobtrusively control, indeed, oppress, persons with impairments and render them disabled and dehumanized. Unfortunately, "the sick role cancels the [impaired] person's obligation to take charge of his or her own affairs." Indeed, it encourages them "to accept the dependency under the sick role as normative for the duration" of the impairment (Crewe et al 1983: 17) . However, as Kassenbaum & Baumann suggest (1965: 18), where the "illness" or impairment is "not temporary, . . . [sick] roleexpectations are clearly inapplicable." An impairment, of course, may be anything but temporary, it may exist for a lifetime. Moreover, defining the problems facing persons with disabilities as a "medical problem presumes a corresponding solution . . . the domination of [their] lives by a vast army of allied [medical or health] professionals" (Barnes et a l ., 1999: 25). The impaired (sick) person is, then, passive, acted upon, by technically competent health professionals, rather than active on his/her own behalf. Consequently, there is a form of paternalism which, as Charlton (1998; 53) notes, works to view "people with disabilities . . . [as] unable to take responsibility for their

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Disability Rights own lives." In short, the sick role works to deprive an impaired person of the autonomy, the control of one's own affairs, which is the defining mark of human personhood. In its initial phase, then, the disability rights movement came to view the medical model as oppressive, a major source of the exclusion from the mainstream of society, the domain of healthy, unimpaired people; and, therefore as a major source of the oppressive marginalization of people with impairments. In its second phase, the movement sought to undercut the hegemony of the medical model and to replace it with a new model. It also called for legislation which would enable those with disabilities to claim their rights as citizens and to attain a productive role in the nation's economy and for the creation of independent living centers in which the new model would be employed and which would empower those with disabilities as citizens with a productive role in the nation's economy. Phase II: Proposed Solutions In all, the disability rights movement proposed solution to the problem of the oppressive marginalization of people with disabilities entails a three pronged approach: 1) the ideological, challenging the medical model and proposing to replace it with a new one, the social model, as the proper model for understanding disability; 2) the legislative, proposing new laws, e.g., the Americans with Disabilities Act (ADA), to guarantee the rights of those with impairments; and 3) the organizational, proposing the creation of Independent Living Centers in which those with impairments are be responsible for their own success (or failure). The Social Model The old, medical model, as noted above, is a plausibility structure, i.e., a set of policies and procedures, whose premises unobtrusively control the lives of people with impairments. Indeed, it is a structure which oppresses such persons by rendering them disabled and dehumanized. Specifically, according to the medical model, the problems facing persons with a disabilities are, simply, medical problems. Medical problems, of course, call for treatment by an array of medical professionals. Submission to professional treatment, as viewed by the medical model, renders the impaired (sick) person passive, unable to exhibit the defining mark of personhood, the control of one's own affairs. Consequently, the disability rights movement views the medical model as oppressive, a major source of the exclusion of people with impairments disabilities from the mainstream, the putative domain of "healthy," unimpaired people. In the view of the disability rights movement, then, the medical model is part of the problem, not the solution. A solution would require that the model be replaced. Efforts to replace it were twofold. First, efforts were made to demonstrate that not only was the medical model oppressive, as noted above, but, when applied to a person with a disability, it was based on a false premise and, therefore, inappropriate. Second, a new, social, model was proposed to replace the old, medical, model. The new model was designed to be liberating, not oppressive, a basis for inclusion, not marginalization.

Disability Rights The medical model was shown to be inappropriate in that it posits that the condition, the impairment or "illness," in question is temporary. Thus, according to the medical model, a person with an impairment could plausibly or reasonably be asked to forgo control of one's own life, handing that control over to the medial professional who would treat the condition, the impairment. After all, the condition was only "temporary" and would be cured soon enough. Consequently, the pain of being deprived of autonomy, of control over one's life, the usual price for the "privilege" of receiving medical treatment for a sickness, would be temporary. Under the medical model, the pain of losing one's autonomy is analogous to pain following a serious operation, or to the side effect of an otherwise beneficial, short-lived, medical treatment: unwanted, unpleasant, but unavoidable, and, thus, an acceptable, consequence of a successful treatment. However, many, if not most, impairments are forever. Blindness, multiple sclerosis, developmental disorders, for example, are rarely cured. Thus, if the medical model prevails, a person with an impairment might, justifiably, be asked to forgo his/her autonomy forever. Those in the disability rights movement did not wish to pay such a price, especially, when the treatment of an impairment as a temporary misfortune or ailment, rather than as what it so often, a long-term, even lifetime, condition is considered a "mis-treatment." The demonstration that the medical model which, while suitable for a truly temporary, short-lived misfortune, is unsuitable when applied to those with a long-term impairment was a key facet of the disability rights movement's efforts to provide an ideological basis for its efforts to provide a solution to the problems facing those with disabilities. A second, key facet was to offer its own model of what disability is and of how to respond to it. Indeed, following Turner's (1969: 3 91) observation, the disability rights movement could only be a "a significant social movement" if it could offer "a revision in the manner in which . . . people look at some misfortune," here long-term impairment, "seeing it . . . an injustice which is intolerable in society." The revision offered by the movement, the social model, holds that disability is not a tolerable, necessary result of an individual's impairment, but something created, in large part, by a society's response to the impairment. Indeed, it is a society's response to an impairment which disables a person, not the impairment itself. Moreover, such a societal response brings with it the injustice of unwarranted denial of the autonomy of people with an impairment. Moreover, if, as the disability rights movement contends, disability is a social oppression, "then disabled people will be seen as the collective victims of . . . society rather as individual victims of circumstance (Oliver 1990: 2). Moreover, if disability is a result of societally induced oppression, societal action, such as passing appropriate laws, would be called for to facilitate the elimination, or, at least, reduction, of that oppression. It was important, then, for the movement to offer a new definition, a new model of disability. The new model, as indicated above, is based on two premises: 1) social conditions convert an impairment into a disability, not

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Disability Rights the impaired person; and, 2) the focus of efforts on behalf of those with a so-called disability should be rooted in respect for their personhood, i.e., on their ability and right to make their own, autonomous, decisions as to how they are to live with their so-called disability, and not on the impairment per s e . That is, it is not the "welfare of the handicapped" that is at issue, but "the human rights of people with disabilities" (Charlton 1998: 115) . In other words, the first premise of the social model is that disability is both a social construction and a social creation (see; Oliver 1990: 82-83) Disability is constructed, individually and collectively, as a consequence of views held by people without a disability and expressed both in hostile social attitudes and in the stigmatization of those with a so-called disability in interpersonal encounters or primary relationships. However, disability is also a social creation in that it is a consequence of the laws, policies and institutionalized practices of society evident in the restrictions faced by those with disabilities in the secondary relationships which characterize the polity and the economy. In short, the first premise is that disability is not the direct result of impairment, but of social restrictions. Such restrictions may, for example, occur as a consequence of inaccessible built environments [no ramps or lifts to provide access for the handicapped], questionable notions of intelligence and social competence [the impaired are also stupid and incompetent, unable to care for themselves], the inability of the general population to use sign language, the lack of reading material in Braille or hostile public attitudes to people with non-visible disabilities [such as mental illness] (Oliver 1990: xiv). In short, people with impairments "are disabled by a society that is geared to the needs of those who can walk, have perfect sight and hearing, can speak distinctly, and are intellectually dexterous" (Brisenden 1998: 23). Whatever the specific restriction, the social model views disability as a form of oppression. Moreover, it views "disabled persons . . . as the collective victims of an uncaring or unknowing society rather than as individual victims of circumstances [such as impairment] (Oliver 1990: 2). Thus, while not denying "the significance of impairment in people's lives . . . [it] concentrates on those social barriers which are constructed 'on top of' impairment" (Barnes et a l . 1999: 2). In short, the social model holds that "people with . . . impairments are disabled by society's blatant failure to accommodate to their needs" (Barnes et a l . 1999: 2). Such failure, of course, marginalizes people, preventing their access to the activities of the mainstream of society. Where the social model's first premise is accepted, however, inclusion would replace marginalization. The second premise of the social model is that people with impairments can and should take control of their own lives as much as possible. That is, above all, their personhood, their ability to be autonomous, to make their own choices, free of unwarranted constraint, and to carry them out, must be respected. This premise is augmented by the view that everybody, with or

Disability Rights without impairments have a range of things they can and cannot do, "a range of abilities both mental and physical that are unique to the individual” (Brisenden 1998: 23). Moreover, the social model renders it plausible to reject policy and practice based on the view that the impairment itself should primarily inform one's conception of a person with an impairment. That is, it renders it implausible for the personhood, the "humanity [to be] stripped away and the person . . . obliterated, only to be left with the condition" (Charlton 1989:54). People are not, as Charlton (p. 54) notes, to be "described by a noun 'the blind,' 'the deaf,' 'the disabled,'" their person equated totally with their "condition." To the contrary, the social model calls for the autonomy of all to be respected, regardless of the degree or form of impairment. Among the reasons for such a call is that impairments may be such as to require medical treatment for extended periods, even for life. Were the medical model to be applied, as noted above, that impaired person would become a patient for life, expected to passively accept the treatment offered, no questions asked, their autonomy held in abeyance. However, the social model with its focus on autonomy calls for a "shift from cure to care" (Zola 1983: 54) and a recognition that treatment should "no longer . . . involve the doctor doing and the patient receiving." Of course, the premise does not call for one "to oppose good physical functioning . . . [but, simply to] stress choice, risk and self-determination" (Varela 1983: 44). However, it does hold that "for treatment to succeed at all, . . . the patient ha[s] to be an active participant" (Zola 1983: 54). Moreover, the second premise, the premise of autonomy, calls for the recognition that persons with an impairment should be allowed, indeed, encouraged to make "decisions for themselves based on many other factors as well as medical ones" (Brisenden 1998: 25) and calls also for all to value the autonomy or independence of a person with an impairment and "ask how this can be assisted and promoted without taking the right of control away from the individual" (Brisenden's 1998: 25). Where the social model proffered by the disability rights movement is adopted, people with disabilities would be empowered, not oppressed, and included, not marginalized. Of course, the movement recognized that an improved ideology would not suffice to advance its cause. Legislation to guarantee the rights of those with impairments would also be needed, as would the creation of so-called Independent Living Centers in which those with impairments would be responsible for their own success (or failure). Legislation to Empower and Include The history of the efforts of the disability rights movement on behalf of legislation which would facilitate the attainment of its twin goals of the inclusion and empowerment of persons with disabilities can be said to begin in the 1950s. Specifically, it can be traced (Varela 1983: 35) to the "paralyzed veterans . . . fighting for more parking spaces, and for more accessible commodes . . . " and to the fight by people with disabilities "for local and state accessibility laws throughout the 1950s." The first significant federal legislation advancing the goals of the movement came in 1965 with the creation of the

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Disability Rights National Commission on Architectural Barriers to the Rehabilitation of the Handicapped. The Commission was to "study the problems involved in making all federal buildings accessible to disabled citizens" (Varela 1983: 36). However, the import of the work of the Commission on such problems is not limited to problems of access. As Varela (1983: 36) observes, "the work of the Commission, and, more importantly, of disabled activists . . . [changed] attitudes toward disability . . . ." The change was from "an emphasis on services (that is, on doing something about 'those people')" to "an emphasis on civil rights (that is, the notion that once certain obstacles were removed, disabled people would be able to do a lot more for themselves than society had imagined)" (Varela 1983: 36). In short, efforts to include those with disabilities became efforts to empower them as well. Moreover, the notion that environmental obstacles and not just the impairment of individuals were worthy of attention rendered it plausible to seek the enactment of laws and regulations that would do so. In other words, "environmental variables, unlike individual characteristics can be rectified through legislative and administrative action" (DeJong 1983: 25). In 1968, the Architectural Barriers Act was passed. It stipulated that any facility built with or merely receiving federal funds had to be accessible to all. However, enforcement was minimal (Varela 1983: 36). Fortunately, the Rehabilitation Act of 1973, in a provision welcomed by the disability right movement, established the Architectural and Transportation Barriers Compliance Board (A&TBCB) to investigate and enforce compliance with established standards. Unfortunately, it "never received the funding it needed to enforce the law or even to investigate all . . . violations . . . reported by disabled consumers" (Varela 1983: 37). Nevertheless, the fight for accessibility did advance the cause of the disability rights movement. It helped make it clear that barriers included "social, political and intellectual obstacles, as well as physical ones" (Varela 1983: 37). Moreover, the 1973 Rehabilitation Act contained provisions in addition to the establishment of the A&TBCB which were important to the movement (Varela 1983: 40-41). It required the establishment, by state rehabilitation agencies, of selection methods that would ensure that people with severe impairments were not excluded from the agency's programs. In effect, then, the Act made it clear that no impairment, no matter how severe, was to be allowed as a consequences of a state agency's denial of services to become a disability. In addition, the 1973 act included provisions for client rights and for civil rights. Specifically, Section 504 prohibited discrimination against persons with so-called disabilities by any federally supported program. Thus, Section 504 was important to persons with socalled disabilities "who were looking for jobs . . . who wanted to use the same clinic as everyone else, who wanted the same choice of apartments, and who wanted to get into the polling places on election day" (Varela 1983: 42), who wanted simply to be an autonomous, contributing member of society. The next step in the history of legislation to empower and include people with impairments was the passage of Individuals with Disabilities Education Act (IDEA, originally called the Education for All Handicapped Children Act of 1975, P. L.

Disability Rights 94-142). IDEA set "forth a comprehensive scheme" to ensure "two basic substantive rights of eligible children with disabilities . . ." These were: "(1) the right to a free appropriate public education, and (2) the right to that education in the least restrictive environment" (National Council on Disability 2000: 28). The law applied in every state that receives federal funds under IDEA and to all public agencies authorized to provide special education and related services in a state that receives such funds. The Act was amended and reauthorized in 1997 (NCD 2000 30-31). In 1978, the Rehabilitation, Comprehensive Services and Developmental Disabilities Amendments (P. L. 95-602) of the 1973 Rehabilitation Act were passed. The amendments evinced Congress' endorsement of the autonomy premise of the social model described above. That is, the Amendments acknowledged that persons with disabilities should be involved in forming the policies and practices which affect their lives. Specifically, it mandated that a grant for an independent living center "provide assurances that handicapped individuals be substantially involved in [the] policy direction and management of such center, and will be employed by such center" (P. L . . 95-602 as quoted by Varela 1983: 46) . Many, if not most, however, view the enactment of the Americans with Disability Act (ADA) in 1990 as the crowning achievement of the disability rights movement. That act (P. L. 101-336) extended provisions of the Rehabilitation Act of 1973 and the 197 8 amendments well beyond the earlier application to federally supported programs and the state rehabilitation agencies and of the IDEA to special education. Indeed, it "codified into law important principles that would henceforth govern the relationship between [American] society and its citizens with disabilities . . . [and] altered public discourse about disability and about the role of people with disabilities in American society" (National Council on Disability 1997b: 4-5). It did so, first, by, in effect, making the marginalization, the exclusion of people with impairments from the mainstream of society in the United States, illegitimate. Specifically, it declared that "people with disabilities are an integral part of society and, as such, should not be segregated, isolated, or subjected to the effects of discrimination" (National Council on Disability 1997b: 4). Furthermore, it sought to enable "people with disabilities to take charge of their lives . . . by fostering employment opportunities, facilitating access to public transportation and public accommodation, and ensuring the use of our nation's communication system" (National Council on Disability 1997b: 4). Moreover, the principles of the ADA can serve as a basis to test and challenge public policies and practices not consistent with those principles and even to demand they be changed. The ADA, then, "upholds the principle that each individual has the potential, and deserves, the right to participate in, and contribute to, society" (National Council on Disability 1997b: 5). In the words of President Bush, at the signing ceremony, "The Act . . . will ensure that people with disabilities are given the basic guarantees [of] . . . [i]ndependence, control of their lives, [and] the opportunity to blend fully and equally into the . . . mosaic of the American mainstream" (National

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Disability Rights Council on Disability 1997b: 58). In short, ADA enacts the slogan of the disability rights movement, "nothing about us, without us," into law and renders the oppressive marginalization of people with impairments illegal and, perhaps, even un-American or, at least, unacceptable to the mainstream of American society.. Independent Living Centers With the articulation of the social model and the passage of the Rehabilitation Act of 1973 as amended in 1978, IDEA (1975) and ADA (1990), the ideological and legislative components of the disability rights movement’s threefold program to solve problems facing people with disabilities were in place. The third component, the organizational, remained. It calls for the creation of independent living centers in which those with socalled disabilities would both be empowered to make their own efforts to enter society’s mainstream and to be responsible for the success (or failure) of their efforts. The first independent living center was incorporated in Berkeley in 1972. It was run by people with impairments who approached "their problems as social issues" and made "integration into the community its chief goal" (Shapiro 1993 [1981] : 53-54) . A similar center began operations in Boston in 1974 (DeJong 1983: 8). The 1978 amendments to the Rehabilitation Act provided statutory authorization for independent living services (DeJong 1983: 10) and, as noted above, also provided support for independent living centers. There are now many such centers of varying types (Frieden 1983: 65ff.) throughout the United States and elsewhere (Tate & Lee 1983). Despite variations in their particular programs, independent living centers, define "independence as the freedom to choose" (Kasnitz & Shuttleworth 1999: 14) and accept as a goal the provision of services needed, in a given local community, by people with so-called disabilities which "increase their own self-determination and to minimize dependence on others" (Frieden 1983: 62). The services offered to attain that goal may include "housing assistance, attendant care, readers and/or interpreters, peer counseling, financial and legal advocacy, and community awareness and barrier-removal programs" (Frieden 1983: 64). Such services are, of course, consistent with the ideology of the disability rights movement, the social model of disability, in that they focus on the environmental factors important in the determination of whether or not an impairment becomes a disability. Such services are also consistent with the social model by striving to avoid what DeJong (1983: 22) calls "the dependency-inducing features of the relationship between professional and client." Thus, centers seek to minimize dependence on the intervention of health professionals, be they physicians or physical therapists, and to maximize use of advocacy, peer counseling and self-help to remove physical, social and other environmental barriers. Furthermore, while recognizing "the importance of self-care, mobility and employment, independent living has emphasized a larger constellation of outcomes" (DeJong 1983: 24). Thus, for example, centers regard gainful employment as but "one of several ways a person can become independent" and recognize that a person may also be productive through "contributions to family and

Disability Rights community life" (Tate & Lee 1983: 111). Furthermore, while health professionals "tend to define independence in terms of self-care activities such as washing, dressing, toileting, cooking and eating without assistance" (Oliver 1990: 91), independent living centers do not. They "define independence differently, seeing it as the ability to be in control of and make decisions about one's life, rather than doing things alone or without help" (Oliver 1990: 91). Thus, in some instances, the significance of self-care is questioned in an individual living center. For example, it may be noted that a "person who can get dressed in fifteen minutes with human assistance and then be off for a day of work is more independent than the person who takes two hours to dress and then remains homebound" (DeJong 1983: 24). More generally, the concept of independence is redefined "such that services that make our environment accessible (e.g., personal care assistance, sign language interpretation) are regarded as promoting independence rather than reflecting dependence" (Robertson 1998: 34). Similarly, "adaptive equipment [which] enable a broader sphere of activity" are viewed as liberating (Robertson 1998: 34). Thus, "one is not 'confined to a wheelchair,' but 'uses a wheelchair'" (Robertson 1998: 34). The disability rights movement, then, tends not to define "independence," as is commonly done, in terms of a totally selfreliant, self-sufficient individual who needs nobody and could live alone in the wilderness. (See: Bellah, Madsen, Sullivan, Swidler & Tipton 1985; Slater 1971). To the contrary, the movement recognizes the inevitability of interdependence in a modern society (see also: Reindal 1999, Ells 2001, and Smith 2001). Indeed, as Crewe & Harkins (1983: 328) observe, "None of us living today in Western society is entirely independent." Few bake their own bread, make their own clothes or build our own homes. In short, "everyone has a place somewhere on the continuum between complete dependence and complete independence" (Crewe & Harkins 1983*. 328). Consequently, the movement does not regard increasing independence as an increase in how many tasks one can do by one's self, but rather as an increase in one's autonomy, i.e., an increase in one's ability to make one's own decisions and carry them o u t . In sum, then, individual living centers hold, with Zola (1982: 396), that "(I)ndependent living must include not only the quality of physical tasks we can do, but the quality of life we can lead." Thus, the goal of an independent living center is to improve the quality of the life of persons with impairments by assisting them in overcoming barriers which undermine one's autonomy by frustrating one's ability to carry out one's decisions. When that goal is attained, the disability rights movement can claim success. It can claim that the three aspects, the ideological, the legislative and the organizational, of its program to eliminate, or at least alleviate, the problems which people with disabilities face has succeeded. That is, with both the establishment of organizations, namely, independent living centers, whose operations are consistent with the ideology, the social model, preferred by the disability rights movement and the passage of supportive legislation which the movement fought to have enacted, the disability rights movement can be said to have been successful.

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Disability Rights The aftermath of its success ideologically, legislatively and organizationally, has not, however, meant the movement is now trouble-free. To the contrary, despite, or more accurately because of, its success the disability rights movement now finds new problems, often the unintended consequence of their own efforts, must be addressed. Phase III: Aftermath Even in the aftermath of its success, the disability rights movement still encounters problems. Some are the unanticipated or unintended consequences of one or another of its successes. For example, the new ideology, the social model, renders it difficult for those in the movement to join others to seek what many regard as needed reforms. Furthermore, new legislation makes many positive results possible, but the quality of enforcement may, nevertheless, be wanting. Finally, a consciousness raised by the suggestion of new organizational forms, such as independent living centers, may lead to a level of self-confidence which, in turn, leads to forgoing some previous forms of aid and some previous alliances or potentially valuable new ones. In short, despite its success, and, in some instances, because of it, the aftermath of success in the realms of ideology, legislation and organization, still finds problems in need of attention if future success is to be attained. Aftermath of Adopting the Social Model One of the central tenets of the social model of disability may be stated rather forthrightly: "Disability is not measles. It is not a medical condition that needs to be eliminated from the population" (Rioux 1994: 7). In other words, the social model rejects the notion that disability is a disease, or even that it is primarily a medical condition. One consequence, perhaps unexpected or unintended, of such rejection is that the disability rights movement finds itself uninvolved in many discussions of reform in the health care system which could benefit people with disabilities. Managed care is one such reform. Rejection of the medical model has also led the movement to oppose legislation, e.g., unlimited abortion rights and the legalization of assisted suicides or euthanasia., supported by many who were allies when the movement looked to for support of its own causes and concerns (Watson 1993) . Since the movement still has unfinished business which may require Congressional action, not supporting those who once supported it may not be wise. It can so weaken the coalition supporting legislation the disability rights movement wants that such legislation will not pass. Legislation is, after all, generally the result of the action of strong coalitions. For example, the Ticket to Work and Work Incentives Improvement Act of 1999 (P.L. 106-170) which hopes to provide opportunities for persons with disabilities to be productive citizens, was enacted following "the inexhaustible effort of the disability community's grassroots organizations . . . to bring this bipartisan measure to fruition" ( National Council on Disabilities 1999b: 1). Bipartisan measures require coalition building. Anything which weakens a needed coalition, weakens the movement's ability to bring about the enactment of needed laws.

Disability Rights Specifically, as Watson (1993: 4) suggests, the lack of involvement in discussions of such health care reforms as managed care is, in part, because the disability rights movement, which "worked so hard for so long to separate the issues of health and disability," has had "to be extremely careful about how it brought them back together." Consequently, the disability rights movement has "not offered any substantial measures for containing costs . . . " o r any alternative to managed care (Watson 1993: 7). Indeed, it has not been deeply involved in the discussion of what the best health care or managed care system might be. There is concern that such involvement might lead to the appearance of supporting a medical, rather than social, model of disability. Thus, "(w)hen health policy is the topic of discussion, the disability [rights] movement is generally not at the table" (Watson 1993: 3). The disability rights movement has, however, been involved in attempts to limit the right to have an abortion and to limit legalized assisted suicides or euthanasia. Advocates of disability rights may base their opposition to unlimited abortion rights, on the fear that the absence of limits renders abortion on the grounds of anticipated impairment permissible (Barnes et a l . 1999: 222). In an era of amniocentesis and ultrasound scanners accurate predictions can indeed be made as to whether a neonate will have an impairment such as spina bifida. The justification of the abortion of a fetus with an impairment is generally that a child with a disability "places an excessive burden on the woman/family/society . . . " (Barnes et a l . 1999: 222). Such a justification, however, may well frighten people who have grown up with the impairment in question (Watson 1993: 6), especially since many of them live rewarding and reasonably independent lives (Alderson 2001.). At least some may fear that "it is a small step from denying life to a fetus who might be born with an impairment to denying rights to one who already has a similar impairment" (Barnes et a l . 1999: 222). Such fear has been furthered by the suggestion by the noted philosopher Peter Singer (2001) that it may not always be wrong to intentionally take the life of an innocent human being such as a severely disabled newborn (see also: Vehmas 1999, Callahan 2001, Conrad 2001, Marzano-Parisoli 2001). Similar grounds are given for opposing assisted suicide or euthanasia. That is, people with disability may, for example, fear that it is also a small step from shutting off the respirator for a comatose person to assisting, or encouraging, the suicide of one with a severe impairment (Watson 1993: 6). The National Council on Disability (NCD), an independent federal agency, while acknowledging (NCD 1997a: 3), "the benefits of permitting physician-assisted suicide are substantial and should not be discounted," stated that, "the dangers of permitting physician-assisted suicide are immense." The Council (1997a: 3) also noted that "as society has frequently made it clear that it believes [people with disabilities] would be better off dead, or better that they had not been born," people with disabilities have grounds to fear they would be "among the most likely candidates for ending their lives" via an assisted suicide or euthanasia. Furthermore, NCD doubted that the programs and resources needed to ensure that anyone contemplating an assisted suicide was aware of other

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Disability Rights options could be made available. The promise to provide such needed programs, resources and options "strikes many people with disabilities as . . . very shallow" (NCD 1997a: 4). They know, the Council added, "that all too often the programs are few, the resources are too limited, and the options nonexistent" (NCD 1997a: 4). Aftermath of Legislative Successes The laws which the disability rights movement worked to pass mark a great step forward in the struggle to end the oppression and marginalization of those with disabilities. However, as Keiser (1999) found in an examination of the disability program within Social Security, laws require interpretation. Moreover, laws are not self-enforcing. Compliance is not apt to be universal. For example, a report conducted on behalf of the National Council on Disability found (NCD 2000: 11) "every state was out of compliance with IDEA [Individuals with Disabilities Education Act] to some degree." Moreover, the report finds that states have failed to meet their obligation to ensure compliance with core provisions of the act at the local level and that "far too often" children with disabilities and/or their families find they have to file complaints on their own to ensure that the law is followed (NCD 2000: 11). Similar problems, no doubt, exist with respect to Section 504 of the 1973 Rehabilitation Act and the Americans with Disabilities Act (ADA). However, the federal government made greater progress in the years 1990-1994 immediately following the passage of ADA than after that of Section 504 (West 1996: 4). Nevertheless, the federal government lacks an overall strategy to coordinate the efforts of the " [o]ver nine federal agencies . . . significantly involved in implementation" of ADA, e.g., for providing technical support, investigating complaints and litigating when necessary (West 1996: 4). In a similar vein, the NCD (2002a) notes, "the federal agencies charged with enforcement . . . under ADA, to varying degrees, have been overly cautious, reactive," and, as did West, "lacking any coherent and unifying national strategy." Moreover, such enforcement efforts as there have been "are largely shaped by a case-by-case approach based on individual complaints rather than an approach based on compliance monitoring and a cohesive, proactive enforcement strategy" (National Council on Disabilities 2002a). So, even in the aftermath of the enactment of welcome legislation such ADA, problems remain. Problems encountered by those seeking the enforcement of ADA may, however, go deeper than a lack of coordination among federal agencies. Indeed,."frontier or emergent issues" are encountered and found "to be controversial, complex, unexpected, and challenging" (NCD 2002a). Such problems may stem from possible conflicts among the fundamental values implicit in the act (Koppelman 1996; see also Pfeiffer 1994, Clegg 1999). Such values include equality of opportunity, beneficence and efficiency (Koppelman 1996: 196) . Disputes in which these values may come into conflict include: the allocation of health care, the meaning of "qualified but disabled" when applied to persons with mental disabilities, modifications in testing and licensure procedures for persons with impairments, and the possibility of a backlash with respect to accommodations made similar to that

Disability Rights which plagues affirmative action on behalf of people of color (Koppelman 1996: 196-205). Until there is a "better idea of how to understand or rank these values when they conflict," Koppelman (1996: 196) notes, "the meaning and implications of the ADA's promise of protection and opportunity for" persons with disabilities cannot be known. In addition, key concepts in the ADA and similar acts are difficult to define. These include "nondiscrimination," "reasonable accommodation," and "readily achievable" adjustments to the needs of an individual with a disability. Indeed, even the term "disability" can be hard to define in a particular case. The National Council on Disabilities, not surprisingly (NCD 1997b: Appendix F), has its own working definitions of these and other important terms. Nevertheless, final, binding definitions will require innumerable discussions on the local level between an employer and employee or between a parent and a school board and, of course, Supreme Court rulings. The last, of course, need not please the disability rights movement. For example, in a series of early cases (Sutton v. United States Air Lines, Inc. (No. 97-1943), Albertsons Inc. v. Kirkingburg (No. 98-591) and Murphy v. United Parcel Service Inc. (No. 97-1992)), the Court "ruled that ADA does not protect people who have conditions or disabilities that are being corrected with medication or assistive devices such as eyeglasses" (National Council on Disabilities 1999a: 2). It is possible, therefore, that contrary to what those in the disability rights movement might wish, "people with treatable conditions such as epilepsy, diabetes, and bipolar disorder [are] outside the law's protection, as well." (NCD 1999a: 2) Later Supreme Court rulings have also not all been pleasing to the movement. In one such case, (Board of Trustees of the University of Alabama v. Garrett, 531 U.S. 356 (2001)), the Court, in the view of a report to the National Council, (NCD 2002b), "devastatingly stripped the right of state workers to sue their employers for money damages for violations of Title I of ADA, which prohibits employment discrimination against people with disabilities." In another ruling, (Toyota Motor Manufacturing, Kentucky, Inc. v. Williams, 122 S .C t . 681 (2002)), the Court, in what the NCD (2000b) views as "inordinately restrictive view of what is required to demonstrate disability under ADA," held "that Congress intended to create a demanding standard for meeting the definition ’disabled' and suggests that people must be visibly and functionally unable to perform in certain specific, socially expected ways before they are entitled to the protection of the ADA." (NCD 2002c). Another, more recent decision, Chevron U.S.A. v. Mario Echazabel (No. 00-1406) the Court held that an employer may decide whether that the risk of a given job is too great for a person with a disability even if the person is willing to take the risk, can perform all job functions and poses no threat to anybody else. The decision was declared "appalling" by the NCD. The basis for doing so, is mindful of key elements of the social model. Specifically, a NCD spokesperson, declared that the unanimous decision "not only curtails the civil rights of people with disabilities to equal employment opportunity, but egregiously infringes upon on their human right to assume the risk and responsibility for their own decisions" (NCD 2002e).

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Disability Rights However, a more favorable decision was reached in Equal Employment Opportunity Commission (EEOC) v. Waffle House, Inc.(122 S. C t . 54 2002). That decision holds that an arbitration "agreement between an employer and an employee to arbitrate employment-related disputes . . . does not bar EEOC from pursuing victim-specific judicial relief [under ADA] on behalf of an employee" (NCD 2002d). In sum, while it is clear that the enactment of the 1973 Rehabilitation Act, the IDEA and the ADA, are momentous accomplishments, to which the disabilities right movement may point with pride, the aftermath of their enactment has not always been followed by meaningful compliance. In addition, unresolved questions as to just what the values undergirding these laws and key terms mean in a particular case remain. Many of these matters will be raised and resolved over and over again in negotiations with countless school officials, government officials and business people at all levels. Some resolutions may require Supreme Court rulings. Many, or even most, such resolutions and rulings, in all likelihood, will enable those with disabilities to retain the "raised consciousness" and pride instilled by the success achieved at independent living centers. Aftermath of Successful Independent Living Centers A successful independent living center is one in which people with disabilities take control of their own lives, make their own decisions and, perhaps with assistance, carry them out. In short, a successful center is a center replete with autonomous individuals who, while impaired, resist being disabled, that is, resist being oppressed and marginalized. As such success becomes more and more common and more and more visible, it serves to raise the consciousness of people with disabilities both within and outside the centers. As Charlton (1998: 118) notes, a "raised consciousness involves a change in consciousness whereby the (false) notion of disability as a pitiful, medical condition has been replaced by the (true) awareness of disability as a social condition (parentheses original)." Two likely consequences of such a raised consciousness are: 1) an empowered consciousness, and 2) the replacement of feelings among people with an impairment of shame with feelings of pride in who and what they are. First, as success breeds success, as awareness of the social sources of disability, and as more and more people with impairments act autonomously, their raised consciousness may be transformed into empowered consciousness. Empowered consciousness "means acting together to empower others" and an insistence on "active, collective contestation for control over the necessities of life: housing, school, personal and family relationships, respect, independence, and so on" (Charlton 1998: 119). That is, more and more people become activists in their own lives and on the behalf of others. Of course, not every one will do so. Indeed, the very success of the disability rights movement means not quite as many may be needed to maintain momentum as was needed to get started. Moreover, insofar as understanding of the disability rights movement is, as Robertson (1998: 32) suggests, "informed not only by the experience of disabled people (sic), but by the civil rights movement, movements of African-Americans and other

Disability Rights minority groups, the women's rights movement and by the current movement for gay and lesbian rights," it is to be expected that a period of success will be followed by one of quiescence on disability rights issues may follow. In addition to engendering an empowered consciousness, a raised consciousness can also engender pride, rather than shame, on the part of those with impairments, as to who and what they are. That is, they may take pride in those aspects of their respective selves which mark them as "different from the rest of society" but, yet, contribute to making them who they are. One result may be the development of a positive self-identity embracing all aspects of one's self, impaired and unimpaired alike. In other words, rather than viewing an impairment as a deficit, "people with impairments would view their respective impairments as part of [a] whole, complete self " (Robertson 1998: 32) in which they take great pride. Such pride may, as with any pride, merely precede a fall, or, at least, what people would take to be a fall. For example, some people who are deaf refuse cochlear implants. Such implants involve placing a computerized device into the ear. The device carries signals to the brain which interprets them as sounds, thereby, enabling one who is deaf to hear. Many reject the operation because it suggests that "deafness is a pathology, something to be corrected or eliminated" (Shapiro 1993 [1981]: 224; see also Lane 1992: 203-238). For those who accept deafness as "part of a whole, complete self," such an operation is not necessary. Many in the hearing community may regard accepting deafness, when it is not necessary to do so, is rather odd, even incomprehensible. However, as the acceptance of the autonomy of those with so-called disabilities is accepted, the acceptance of their right to choose their own identity may will grow as well. Perhaps, at some point the recommendation of the National Association of the Deaf, an advocacy group, that there be a ban on cochlear implants in children "so they could grow up and then decide to choose a deaf identity or a hearing one" (Shapiro 1993 [1981]: 224) will seem neither odd nor incomprehensible (see also: Hollins 2000). Of course, viewing one's disability as part of a complete self and the high self-esteem that such a view brings may have results in addition to resisting attempts to eliminate the disability. It can lead to people with so-called disabilities increasingly viewing themselves "as members of a distinct minority, possessing a unique and valuable culture" replete with its own symbols, rituals and values (Robertson 1998: 32). Indeed, within such a culture, consciousness may be raised to the point where all, as Hahn (1988:27) suggests, remember that "history discloses abundant proof that images of beauty have changed continually, and that physical differences or disabilities sometimes have been considered attractive and appealing." In short, "disability can be beautiful." Moreover, such a culture could support the social (inclusion) and political (empowerment) agenda of the disability rights movement. It could also support the argument "that, as with women and blacks," those with disabilities "have reached that point in history where having been there is essential to determining where to go" (Zola 1983: 57). If so, the goal expressed in the slogan of the disability rights movement, "nothing about us, without us," has been

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Disability Rights York: Cassell. Bellah, Robert N., Richard Madsen, William Sullivan, Ann Swidler and Steven M. Tipton. 1985. Habits of the Heart: Individualism and Commitment in American Life. Berkeley: University of California Press. Berger, Peter L. and Thomas Luckmann. 1966. The Social Construction of Reality: A Treatise in the Sociology of Knowledge. Garden City, NY: Doubleday. Blumer. Herbert. 1971. "Social Problems as Collective Behavior." Social Problems 18: 298-306. Brisenden, Simon. 1998. "Independent Living and the Medical Model of Disability." Pp. 20-27 in The Disability Reader: Social Science Perspectives, edited by Tom Shakespeare. London and New York: Cassell. Bumiller, Elisabeth. 2000. "Council Urged to End a Most Sinister Bias." The New York Times June 22: B-4. Callahan, Daniel. 2001. "Defending the Sanctity of Life Society." Society 38: (5) 253 16-19. Charlton, James I. 1998. Nothing About Us Without Us. Berkeley, Los Angeles, London*. University of California Press. Clegg, Roger. 1999. "The Costly Compassion of the ADA." The Public Interest 136: 100-112. Conrad, Peter. 2001. "Off Target." Society 38: (5) 253 33-35. Cooper, Margaret. 1999. "The Australian Disability Rights Movement Lives" Disability and Society 14: 217-226. Crewe, Nancy M. and Arthur Harkins. 1983. "The Future of Independent Living." Pp. 327-343 in Independent Living for Physically Disabled People, edited by Nancy Crewe, Irving Kenneth Zola and Associates. San Francisco, Washington, London*. JosseyBass. Crewe, Nancy M . , Irving Kenneth Zola and Associates. 1983. Independent Living for Physically Disabled People. San Francisco, Washington, London: Jossey-Bass. DeJong, Gerben. 1983. "Defining and Implementing the Independent Living Concept." Pp. 4-27 in Independent Living for Physically Disabled People, edited by Nancy Crewe, Irving Kenneth Zola and Associates. San Francisco, Washington, London*. JosseyBass . Ells, Carolyn. 2001. "Lessons about Autonomy from the Experience of Disability." Social Theory and Practice 27: 599615. Frieden, Lex. 1983. "Understanding Alternative Program Models." Pp. 62-72 in Independent Living for Physically Disabled People, edited by Nancy Crewe, Irving Kenneth Zola and Associates. San Francisco, Washington, London: Jossey-Bass. Fuller, Richard and Richard Myers. 1941. "The Natural History of a Social Problem." American Sociological Review 6: 320-328. Goffman, Erving. 1965. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ*. Prentice Hall. Gottlieb, Nanette. 2001. "Language and Disability in Japan." Disability & Society 16: 981-995. Groce, Nora Ellen. 1985. Everyone Here spoke Sign Language: Hereditary Deafness on Martha's Vineyard. Cambridge, MA and London: Harvard University. Hahn, Harlan. 1988. "Can Disability Be Beautiful." Social

Disability Rights realized to a significant extent. Summary The disability rights movement has, then, moved through the three phases typical of social movements. First, it has defined a problem, the oppressive marginalization of people with disabilities, and identified its sources in the dominant ideas and practices, the hegemonic plausibility structure, which constitute the medical model of disability. In its second phase, the movement moved successfully on three fronts, the ideological, the legislative and the organizational, to solve the problems of those with disabilities. Specifically, it proffered a social model of disability which has, to an important degree, replaced the medical model. It supported legislation, such as the Americans with Disabilities Act (ADA), which has been enacted into law to advance the inclusion of those with disabilities into the mainstream of American society and empowered them to act effectively and productively within it. The movement helped create a new form of organization, the independent living center, to assist those with disabilities when they need assistance. In its third phase, the aftermath of its success, the disability rights movement has found their support of a social model of disability can lead them to stand on the sidelines on some important issues, such as health care reform, and to oppose positions taken by groups whose support they need to build an effective, pro-disability rights coalition. Moreover, in the aftermath of success on the legislative front, the movement has found that, as with all laws, the laws it helped enact are not always well or forcefully applied and that the meaning of its key terms may not be settled. Indeed, it is likely their application will need to be negotiated, by countless individuals with disabilities and their advocates, over and over again with countless school officials, local, state and federal government officials and business people at all levels. Nevertheless, the success of independent living centers should provide the needed advocates and help instill a pride and confidence in those with disabilities, both individually and collectively, sufficient to insure that they are so included and so empowered within mainstream of American society that nothing about them will ever again be done without them.

References Abberley, P. 1967. "The Concept of Oppression and the Development of a Social Theory of Disability." Disability, Handicap and Society 2: 5-21. Alderson, Priscilla. 2001. "Down's Syndrome: Cost, Quality and Value of Life." Social Science and Medicine 53: 627-638. Barnes, Colin, Geof Mercer and Tom Shakespeare. 1999. Exploring Disability: A Sociological Introduction. Malden, MA: Blackwell. Barton, Len. "Sociology, Disability Studies and Education: Some Observations." Pp. 53-64 in The Disability Reader: Social Science Perspectives, edited by Tom Shakespeare. London and New

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Disability Rights Policy 18: 26-32. Hollins, Kathryn. 2000. "Between Two Worlds: The Social Implications of Cochlear Implantation for Children Born Deaf." Pp. 180-195 in Jane Hubert [Ed], Madness, Disability and Social Exclusion: The Archaeology and Anthropology of 'Difference1. London: Rout1edge. Hunt, Paul. 1998. "A Critical Condition." Pp. 7-19 in The Disability Reader: Social Science Perspectives, edited by Tom Shakespeare. London and New York: Cassell. Hayashi, Reiko and Masako Okuhira. 2001. "The Disability Rights Movement in Japan: Past, Present and Future." Disability and Society 16: 855-869. Jayasooria, Denison. 1999. "Disabled People: Active or Passive Citizens: Reflections from the Malaysian Experience." Disability and Society 14: 341-352. Kasnitz, D e w a and Russell Peter Shuttleworth. 1999. "Engaging Anthropology in Disability Studies." Position Papers in Independent Living and Disability Policy 1: 1-34. Kassenbaum, Gene G. and Barbara O. Baumann. 1965. "Dimensions of the Sick Role in Chronic Illness." Journal of Health and Human Behavior 6: 16-27. Keiser, Lael R. 1999. "State Bureaucratic Discretion and the Administration of Social Welfare Programs: The Case of Social Security Disability." Journal of Public Administration Research and Theory 9: 87-106 Koppleman, Loretta M. 1996. "Ethical Assumptions and Ambiguities in the Americans with Disabilities Act." The Journal of Medicine and Philosophy. 21: 187-208. Lane, Harlan. 1992. The Mask of Benevolence: Disabling the Deaf Community. New York: Knopf. Marzano-Parisoli, Maria Michela. 2001. "Disability, Wrongful-Life Lawsuits, and Human Difference: An Exercise in Ethical Perplexity." Social Theory and Practice 27: 637-659. Mauss, Armand L. 197. Social Problems as Social Movements. New York: Lippincott. Michener, H. Andrew and John D. DeLamater. 1999. Social Psychology, 4th ed. Fort Worth, TX and Orlando, FL: Harcourt, Brace. National Council on Disabilities. 1997a. "Assisted Suicide: A Disability Perspective." Washington D. C. Report of the National Council on Disabilities, March 24, 1997. 5 May, 2000 chttp://www.ncd.gov/newsroom/publications/suicide.html> . National Council on Disabilities. 1997b. "Equality of Opportunity: The Making of the Americans with Disabilities Act." Washington D. C. Report of the National Council on Disabilities, July 2, 1997. 28 April 2000 . National Council on Disabilities. 1999a. "Disability Rights Update." NCD Bulletin. June 1999. 4 June, 2002 chttp:// www.ncd.gov/bulletin/b06 9 9 .html>. National Council on Disabilities. 1999b. "Work Incentives Update." NCD Bulletin. December 1999. 15 May, 2000 . National Council on Disabilities. 2000. "Back to School on Civil Rights." Washington D. C. Report of the National Council on Disabilities, January 25, 2000. 28 April, 2000 .

Disability Rights National Council on Disabilities. 2002a., "Executive Summary: Promises to Keep: A Decade of Federal Enforcement of the Americans with Disabilities Act." Washington D.C. Report of the National Council on Disabilities 2 June 2002 . National Council on Disabilities. 2002b. "Civil Rights Update." NCD Bulletin. March 2002. 4 June, 2002 chttp:// www.ncd.gov/bulletin/b0203.html> . National Council on Disabilities. 2002c. "Supreme Court Decisions Interpreting the Americans with Disability Acts." Washington D.C. Report of the National Council on Disabilities March 8, 2 002. 3 June, 2002. . National Council on Disabilities. 2002d."Chart: Supreme Court Decisions Interpreting the Americans with Disability Acts." Washington D.C. Report of the National Council on Disabilities March 8, 2002. 4 June, 2002. . National Council on Disabilities. 2002e. "News Release, 6/10/02." 10 June, 2 002 . Newell, Christopher. 1999. "Encountering Oppression: the Emergence of the Australian Disability Rights Movement." Social Alternatives 18:47-52 Oliver, Michael. 1990. The Politics of Disablement: A Sociological Approach. New York: St. Martin's Press. Parsons, Talcott. 1951. The Social System. Free Press: Glencoe, IL. Perrow, Charles. 1986 (3rd ed.). Complex Organization: A Critical Essay. New York: Yale University Press. Pfeiffer, David. 1994. "The Americans with Disabilities Act: Costly Mandates or Civil Rights?" Disability and Society 9: 533542 . Reindal, Solveig Magnus. 1999. "Independence, Dependence, Interdependence: Some Reflections on the Subject and Personal Autonomy." Disability & Society 14:,353-367 Rioux, Marcia H. 1994. "New Research Directions and Paradigms: Disability is Not Measles." Pp. 1-7 in Disability is Not Measles: New Research Paradigms in Disability, edited by Marcia H. Rioux and Michael Bach. North York, Ontario: Roeher Institute. Robertson, Barbara A. 1998. "Disability Community and Pride." Pp. 30-35 in Syllabi and Instructional Materials for Teaching Sociology of Disabilities edited by Lynn Schlesinger and Diane Taub. Washington D.C.: American Sociological Association. Shapiro, Joseph P. 1993 [1981] . No Pity*. People with Disabilities Forging a New Civil Right Movement. New York: Times Book Random House. Singer, Peter. 2001. "Changing Ethics in Life and Death Decision Making." Society: 38 5 (253): 9-15 Slater, Philip. 1971. The Pursuit of Loneliness. Boston: Beacon Paperbacks. Smith, Steven R. 2001. "Distorted Ideals: The "Problem of Dependency' and the Mythology of Independent Living." Social Theory and Practice 27: 579-598. Spector, Malcolm and John I. Kitsuse. 1977. Constructing Social Problems. Menlo Park, CA: Cummings.

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Disability Rights Tate, Denise Galluf and Thomas A. Lee. 1983. "Learning from Methods Used in Other Countries." Pp. 88-112 in Independent Living for Physically Disabled People, edited by Nancy Crewe, Irving Kenneth Zola and Associates. San Francisco, Washington, London: Jossey-Bass. Turner, Ralph H. 1969. "The Theme of Contemporary Social Movement." British Journal of Sociology 20: 390-405. Union of the Physically Impaired Against Segregation (UPIAS). 1976. Fundamental Principles of Disability. London: Union of the Physically Impaired Against Segregation. Urdang, Laurence (ed.). 1968. Random House Dictionary of the English Language: College Edition. New York: Random House. Varela, Rita A. 1983. "Changing Social Attitudes and Legislation Regarding Disability." Pp. 28-48 in Independent Living for Physically Disabled People, edited by Nancy Crewe, Irving Kenneth Zola and Associates. San Francisco, Washington, London: Jossey-Bass. Vehmas, Simo. 1999. "Discriminative Assumptions of Utilitarian Bioethics Regarding Individuals with Intellectual Disabilities." Disability & Society, 1999 14:37-52. Watson, Sara D. 1993. "An Alliance at Risk: The Disability Movement and Health Care Reform."The American Prospect no. 12: 1-8 2/28/00 . West, Jane. 1996. "Editor's Note." p. 4 in Implementing the Americans with Disabilities Act, edited by Jane West. Cambridge, MA: Blackwell. Williams, Gareth. 1998. "The Sociology of Disability: Towards a Materialist Phenomenology." Pp. 234-244 in The Disability Reader: Social Science Perspectives, edited by Tom Shakespeare. London and New York: Cassell. Zola, Irving, Kenneth. 1982 . "Social and Cultural Disincentives to Independent Living." Archives of Physical Medicine and Rehabilitation 63: 394-397. Zola, Irving, Kenneth. 1983. "Developing New Self-Images and Interdependence." Pp. 49-59 in Independent Living for Physically Disabled People, edited by Nancy Crewe, Irving Kenneth Zola and Associates. San Francisco, Washington, London: Jossey-Bass.

[8]

REASSESSING THE EMPLOYMENT OF PEOPLE WITH DISABILITIES IN EUROPE: FROM QUOTAS TO ANTI DISCRIMINATION LAWS LISA WADDINGTONf Legislative intervention to promote the employment of people with disabilities has been occurring in Europe since the end of the First World War. Early legislation provided for employment quotas, whereby employers were obliged to employ a set percentage of disabled war veterans. The end of the Second World War saw the extension of these quota systems, both in terms of the number of countries which chose to adopt them, and in terms of the kind of disabled people protected, with the new quotas covering disabled civilians as well as ex-soldiers. With the exception of Scandinavia, the quota system has become the standard response of practically all European countries, in both the western and eastern part of the continent, to the employment problems which people with disabilities face.1 This is in spite of the fact that quota systems generally have a relatively poor track record, and have proved unable to stimulate the employment of disabled people in a period of economic difficulty. Now, after what has been in some countries a seventy-five year love-hate affair with the quota system, with it being seen as the core of disability employment policy, the dominance and exclusivity of this approach is finally beginning to be questioned. A number of countries are now considering or adopting an approach which has been applied to gender discrimination in Europe for twenty years or more: anti-dist Lecturer in European Community Law, Maastricht University (NL) and European Observer to the International Society of Organisations for People with a Mental Handicap-European Association. All views expressed are strictly personal. I am grateful to Hildegard Schneider and Yvo Volman for commenting on an earlier draft and to Theresia Degener, Brian Doyle, Caroline Gooding, Clotile Guilbert, Aart Hendriks, Jim Marshall MP, Gail Stewardson and Fergus Whelan for providing relevant information and documentation. 1. Reference here, and elsewhere in this paper, is to open employment. All (European) countries contain a group of disabled people who are regarded as “unemployable” in the open labour market, and accordingly have developed alternative polices with regard to this group. A popular response in the northern European countries, e.g. United Kingdom, the Netherlands, Germany, France, has been to develop an alternative (sheltered) labour market, exclusively for the employment of this group of disabled people.

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crimination legislation.2 This anti-discrimination approach flows from fundamentally different assumptions about disability, and the reasons why people with disabilities are disadvantaged in the labour market, and is therefore based on different principles from those which underlie the quota system. The article examines this emerging European trend towards disability employment anti-discrimination legislation, and considers some of the conceptual and practical differences between this approach and the earlier (and still existing) quota systems. Three different European legislative approaches aimed at countering disability (employ­ ment) discrimination are identified, based on constitutional law, civil law, and criminal law, and an analysis of the (expected) effectiveness of the provisions in question is made. The first and second sections of the paper examine respectively the quota system and anti-discrimination legislation, while the final section considers the reassessment of disability employment policy which is presently occurring in some European countries, and examines the steps that are being taken to adopt disability employment anti-discrimination legislation in Europe. The situations in four countries—Germany, United Kingdom, Ireland, and France—are addressed, and the differing kinds of legislation which have been adopted, or which are being considered, are discussed. In addition the steps that are being taken at the level of the European Union are examined, and the prospect of a relevant Treaty revision being adopted at the present Intergovernmental Conference, and ultimately the adoption of a disability anti-discrimination directive, are analysed. I. The Emergence

and

D evelopment Europe

of the

Quota System

in

As already noted, the first quota systems had their origins in the post-First World War period, and covered only disabled veterans. These quotas were based on the idea that society owed a duty to those who had been disabled while serving their country, and by the end of 1923, Germany, Austria, Italy, Poland and France had all adopted such systems.3 In contrast, some countries shied away from imposing an 2. The first such Community instrument was a directive adopted on February 10, 1975. See Council Directive 75/117 on the Approximation of the Laws of the Member States Relating to the Application of the Principle of Equal Pay for Men and Women, art. 1, 1975 O.J. (L 45) 19. 3. MADHAV R. KLJLKARN1, QUOTA SYSTEMS AND THE EMPLOYMENT OF THE HANDICAPPED: EXPERIENCES IN T hree C ountries 10 (Michigan State University Centre for Institutional Rehabilitation ed. 1982).

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64 COMPARATIVE LABOR LAW JOURNAL [Vol. 18:62 employment obligation on employers, and instead sought to encourage employers to voluntarily take on disabled veterans.4 The high unem­ ployment levels among disabled veterans during the inter-war years, and the lack of success of the voluntary approach, led most European countries to turn to the quota system in the post-Second World War period. These second generation quotas were extended to cover the disabled civilian population. A consequence of this extension was that the concept of duty, which had existed when the systems were exclusively targeted at veterans, was lost, and the new quotas became part of overall social-welfare policy. In some respects the present movement towards anti-discrimination legislation, with its civil rights basis, can be seen as a return to this concept of duty, albeit in a very different form. The quota system has emerged as the main legislative tool in Europe to promote the employment of disabled people. Today, ten of the fifteen Member States of tike European Union have such a system,5 and quotas can also be found in many European countries which are at present not members of the Union.6 All quota systems require employers to employ a set percentage of disabled workers, but within this general framework there is a great deal of scope for variety, and for this reason one cannot speak of a uniform European quota system. Instead European quota systems can be divided into three basic models. These are described in the following sections, and a brief assessment of their effectiveness is made. A. Legislative Recommendation Under this form of quota system employers are not obliged to employ a set percentage of disabled workers, but it is recommended that they do so. An example of such a system can be found in the Netherlands. Until 1986 a quota system very similar to the post-Second World War British model, imposing a legislative obligation but no effective sanction,7 existed in the Netherlands. Under the Dutch 4. This was the approach adopted in the United Kingdom. 5. Portugal and the three Scandinavian Member States do not have a quota system. Denmark, Sweden and Finland object on the grounds that the registration necessarily associated with the quota system is unacceptable. The United Kingdon recently has abolished its long-standing quota system. 6. Poland is one example. See Law on Employment and Vocational Rehabilation o f Disabled People, Dziennik Ustaw No. 46, item 201 (as amended) (concerning employment and vocational rehabilitation o f disabled people) published in D isability : P roblems and Solutions 8 (Centre for Europe Warsaw University, Information and Documentation Unit o f the Council o f Europe, spec. ed. 1994). 7. See discussion infra Part I.B.

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Employment of the Disabled Act of 1947,8 public and private employ­ ers with more than twenty employees were obliged to employ a set quota of “less able-bodied” workers, and disabled people could choose to register as such, and so come within the protection of the Act.9 In 1986 this Act was replaced by the Handicapped Workers Employment Act (WAGW),10 which removed the registration requirement (and extended coverage to all people receiving disability benefits or an invalidity pension) and introduced a new form of quota. Under the WAGW public and private employers were still required to facilitate the employment of disabled people, and a quota target of between three and five per cent, to be achieved over three years, was set. This quota was voluntary, and the legislation did not provide for any sanctions in the event of employers failing to meet the quota. Instead, the government stated that it intended to introduce a legislative obligation, based on a quota of between three and seven percent depending on the branch of industry or public sector concerned, if it became apparent after the three year period (i.e. in 1989) that employers were failing to meet the set quota. This obligation was to have been backed up by a fine of 10,000 florins11 per unoccupied position per year. Employers who exceeded their quota targets were to have received a compensation payment of 10,000 florins for every position occupied by a disabled person in excess of their quota obligation.12 By 1989 there had been little improvement in the employment situation of disabled people, and an official government report showed that only 2.2% of workers with a contract of fifteen days or more were disabled. The government did not respond to this problem by introduc­ ing a compulsory quota as it had threatened to do, but rather concluded that such a quota across all sectors of industry was not “a practicable policy.”13 The Dutch experience suggests that a voluntary quota, 8. Wet plaatsing minder-valide arbeidskrachten, Act of 1 August 1947 Neth. Stb. 283 (1947) (Neth.), (respecting the placement of persons with reduced working capacity). 9. L u n t & T h o rn to n , E m ploym ent p o licies f o r D isab led People 79 (1993). 10. Wet arbeid gehandicapte werknemers, Law of 16 May 1986, Staatsblad van het Koninkrijk der Nederlander [Stb.] 300 (1986), amended by Law of 26 April 1995, Stb. 250 (1995). 11. The florin is equivalent to the Dutch guilder. At the time WAGW was passed, the foreign exchange rate was 2.4915 guilders to one U.S. dollar. See DataStream International, Exchange Rate Database. 12. Lei Delsen & Saskia Klosse, Integration of the Disabled in the Work Process: The Dutch Policy, 17 G eneva Papers on R isk & Ins. No. 62, 119 (1992). 13. LUNT & THORNTON, supra note 9, at 83 (quoting from a report to the International Labor Organization for the period 1 July 1990 to 30 June 1992). In 1994 however, the Dutch government accepted, in theory, that it had an obligation to meet a three percent quota. Aart Hendriks & Maathijs Vermaat, Het Nederlandse gehandicaptenbeleid: een doekfe voor het bloeden, 70 NEDERLANDS JURISTENBLAD [NJB] 126, 131 n.36 (1995).

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which imposes no legal obligation upon employers and provides for no sanctions, has little impact on the numbers of disabled people in open employment. The British pre-war experience seems to confirm this conclusion. There, a voluntary scheme, aimed at encouraging employers to ensure that five percent of their employees were disabled veterans, also failed. That scheme, known as the King’s Roll,14 also had little long-term effect, and as early as 1922 a House of Commons Select Committee reported that firms were withdrawing from the roll and that the scheme was failing.15 B. Legislative Obligation Without Effective Sanction Under this kind of system employers are obliged through legislation to employ a quota of disabled people, but this obligation is not backed up with any effective sanction. This model is typified by the quota system adopted in Britain after the Second World War. The quota, established in 1944 by the Disabled Persons (Employment) Act (DPEA)16 (and abolished by the Disability Discrimination Act 1995),17 required all private employers with twenty or more employees to ensure that at least three percent of their workforce was made up of registered disabled people. Public employers were not bound by this duty, but agreed to accept the same responsibilities as the private sector. It was not an offence for an employer to be below this quota, but an employer was not allowed to engage a non-registered person when below quota, or, where doing so would bring him or her below the quota, unless he or she had a permit granting exemption from this requirement. An employer who contravened the quota requirement was subject to a fine of not more than £50018 or a term of imprisonment of not more than three months. In practice the British quota was not successful in promoting the employment of disabled people, and each year progressively fewer employers met their quota obligation so that in 1993 only 18.9% of employers achieved the 3% quota (compared with 30.4% in 1984).19 14. So called because compliant employers were placed on a roll on honour. (1922). 16. See Disabled Persons (Employment) Act, 7 & 8 Geo. 6, ch. 10 (1944) (Eng.). 17. Disability Discrimination Act, 1995, ch. 50 (Eng.). 18. As of November 1, 1996, the foreign exchange rate is U.S. $1.64 to one British pound. See Olsen & Assoc., 164 Currencies Converter (visited Nov. 2, 1996) . 19. This is based on information provided to the author by the Disability Branch 1 of the British Employment Service. 15. Select C om m ittee on T raining & E mployment of D isabled Ex - service M en , R eport

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There are a number of reasons for the failure of the British quota system, but it is submitted that the most important one was the unwillingness or inability of successive governments to enforce the quota by strictly policing the granting of exemption permits and prosecuting errant employers. Governments of both parties were consistently unwilling to sanction prosecution,20 and instead chose to issue bulk exemption permits to employers allowing them to recruit non-registered workers. As a result, most employers, where they were even aware of the Act,21 regarded compliance with the DPEA as obtaining an exemption permit before hiring non-registered workers, rather than achieving the three percent quota. Consequently fewer and fewer eligible disabled people chose to register, thereby reducing the number of individuals qualifying for preferential treatment under the DPEA. From 1979 on, it was statistically impossible for all employers to meet their three percent target and by the early 1990s, the Employ­ ment Service estimated that only a third of those eligible to register actually did so, meaning that only one percent of the workforce was registered as disabled. Evidence from Britain clearly shows that it is insufficient to simply legislate to impose an obligation on employers to employ disabled people. Such quota systems do little more than rely on the goodwill of employers, and do not greatly increase the chances of the covered disabled people in the open labour market. This is reflected in the fact that there has been a lengthy debate in the United Kingdom over the future of the quota system, and a number of government commissioned reports recommended abolition or drastic amendment.22 The quota was finally abolished in Britain on December 2,1996, when the employment provisions of the new disability anti-discrimination law, the Disability Discrimination Act 1995,23 came into force.

20. The permission of the Secretary of State was needed before any prosecution under the Act could be commenced. 21. Many employers, and indeed lawyers, were unaware of the existence of the DPEA and the obligations it created. 22. The first review (1973-1974) was carried out by the Department of Employment. The second and third reviews (1981-1982 and 1985-1986) were carried out by the Manpower Services Commission while it was responsible for enforcing the quota. The last review (1990-1991) was carried out by the Employment Department Group to which responsibility for the quota was transferred. In addition, the government sought the view of disability organisations and the public on the future role of the quota when it published its consultative document on government measures to tackle discrimination against disabled people in 1994. 23. Disability Discrimination Act, 1995, ch. 50 (Eng.). This Act, which is aimed at combating disability discrimination, will be discussed in more detail in section III.

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C. Legislative Obligation Backed Up By Sanction (Levy-Grant System) The levy-grant system is the form of quota which has attracted most interest from those countries which have sought to introduce or modify a quota system in the 1980s and 90s. It involves setting a quota and requiring that all covered employers who do not meet their obliga­ tion pay a fine or levy which usually goes into a fund to support the employment of disabled people. Germany provides one of the earliest examples of such a system, and its quota has since served as a model for other countries.24 The present German quota system was established by the Severely Handicapped Persons Act in 1974.25 This legislation sets a quota of six percent for all public and private employers with sixteen or more employees. The quota can be reduced to as low as four percent or in­ creased to ten percent. In calculating the quota, certain workers are counted as occupying two or three quota places. This applies to those individuals who the Employment Office feels, because of their degree of disability, are particularly difficult to employ, and disabled people receiving vocational training within the firm. All severely disabled people whose disability amounts to at least a fifty percent reduction in working capacity are covered by the legislation. In addition, the employment office can extend the protection of the law to those with a work-related disability of between thirty and fifty percent if it is satisfied that the individuals concerned experience difficulty in obtaining or maintaining employment as a result of their disability. Employers who do not meet their quota obligation are obliged to pay a levy of, at present, 200DM26 per month for every unfilled quota place. This money is used exclusively to promote rehabilitation and employment of severely disabled people. It can, for example, be used to provide grants to help employers who exceed their quota obligations meet any extra costs like adapting buildings and providing special training. The law is based on the principle that all employers above a certain size should contribute to the economic integration of severely disabled workers. Ideally, this integration should occur through the 24. France is one such country. See Law No.87-517 of July 10,1987, Journal Officiel [J.O.] July 12, 1988, p. 7822; see ILO LEGIS. SERIES, Fr. 2 (1987) (English translation of law in favour of the employment of workers with a disability). 25. Schwerbehindertergesetz [SchwbG], v. 30.4.1974 (BGB1.1 S. 1005); see ILO LEGIS. SERIES, Ger. F.R.3 (1974) (Eng. trans.). The SchwbG has been amended a number of times since 1974. 26. At present, the foreign exchange rate is 1.5 German marks to one U.S. dollar. Olsen & Assoc. 164 Currencies Converter (visited Sept. 18, 1996) .

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actual provision of employment for such workers, but where this is not the case, a contribution should be made via the levy procedure. The German quota system undoubtedly has made a greater contribution to promoting the employment of disabled people than the two previously described systems. However in recent years the German quota has become progressively less effective. Since 1982, when the average quota achieved was 5.9%, the situation has steadily worsened; in 1992 the average percentage of severely disabled workers employed within firms had fallen to 4.3%.27 The German quota has proved itself incapable of maintaining the targeted level of employment for severely disabled people during a period of economic recession. The economic difficulties, combined with the relatively low levy, seem to make payment a more attractive option than the unknown risks of hiring a severely disabled worker. D. Variation upon the Three Basic Models All three models described above can be adapted to fit national economic and political requirements since they allow policy makers to influence the size and nature of both the targeted group of beneficiaries (disabled people) and the group upon whom obligations are imposed (employers). This can be achieved in a number of ways. First, a relatively narrow definition of disability, which targets more severely disabled people, can be adopted as has occurred in Germany. On the other hand, a much broader definition extends quota coverage to many more people with much milder forms of disabilities. The latter has occurred in the Netherlands for example, where the main objective of the voluntary quota scheme is to reduce the number of people claiming disability benefits, and everyone who is eligible for such benefits is also regarded as disabled for the purposes of the quota. This has led to an extremely large group of covered workers from whom employers can recruit. A second means of adapting the system is through the setting of the relevant quota percentage. Among the quota systems in operation in the European Union, the percentage varies from two percent in Spain to fifteen percent in Italy (where the quota system covers not only disabled people, but also widows, orphans and refugees). "Variability in the fixed quota percentage, as well as in the types of individuals covered, clearly influences the degree of obligation imposed on employers. 27. This figure hides regional differences, ranging from a 7.18% employment rate in Saarland to 2.56% in Mecklenburg-Vorpommern. See DRITTER BERICHT DER BUNDESREGIERUNG, D ie L age der B ehinderten

und die E ntwicklung der R ehabilitation

(1994).

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The extent of the obligation imposed on employers is also affected by the minimum number of workers which must be employed, and the means of calculating this number, before an employer is subject to the quota. The minimum size of firms covered by quota legislation in the European Union varies from sixteen employees in Germany to fifty in Spain. These variations will significantly affect the number of jobs covered by the quota legislation, and therefore the number of jobs reserved for eligible disabled people. An additional means of varying the quota is to target either the public or private sector, or both. In most European Union Member States both kinds of employers are covered, although in Ireland the legislation only applies to the public sector, while in the United Kingdom the provisions of the recently abolished DPEA did not apply to the public sector; the Crown had however accepted the same obligations.28 Finally, where quotas are based on the levy-grant system, the size of the levy can be altered. Common sense suggests that the higher the levy, the greater the incentive for employers to take on disabled workers. However, evidence from Germany suggests that a doubling of the levy in that country in the 1980s would have persuaded only a quarter of covered employers to employ more disabled people.29 It is probable that the only way in which large numbers of employers can be persuaded to meet their quota targets is to increase the levy to such a level that it becomes cheaper to employ disabled workers than to pay the contribution. As yet no country has demonstrated such a commit­ ment to the employment of disabled people, and it is not realistic to expect European quotas to be adapted in this way.30 E. Assumptions Underlying the Quota System European quota systems clearly aim to promote the employment of disabled people, and are based on the belief that, without some form of 28. The Crown (i.e. Queen Elizabeth II) is the official employer in a number of public service sectors in the United Kingdom, e.g. the prison service, which is officially known as “Her Majesty’s Prison Service.” Obligations imposed under the DPEA therefore also applied to various public service providers. 29. See Franz Brandt, SODDEUTSCHE ZEITUNG, February 27, 1990, (1984 study carried out for the Institut fur Sozialforschung und Sozialwirtschaft, Saarbriicken claiming that only 25% of employers would employ more disabled people if the levy was doubled). For criticism of the way in which the research was carried out see LISA WADDINGTON, DISABILITY, EMPLOYMENT and THE EUROPEAN COMMUNITY, 233 (1995). 30. For further comment on European quota systems see Lisa Waddington, Legislating to Employ People with Disabilities: The European and American Way, 1 MAASTRICHT J. EUR. & COMP. L. 367-95 (1994).

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legislative intervention, disabled people would not make up the relevant (quota) percentage of the employed workforce. Anti-discrimination legislation is also based on the belief that legislation is needed to promote the employment of people with disabilities (although no quota is set). It is submitted that, in addition, quotas are based on two related assumptions: (1) that employers will not hire large numbers of disabled people unless they are required to do so, and (2) that most disabled people are unable to compete for jobs with their non-disabled counter­ parts on an equal basis, and win them on their merits. In short, the as­ sumption that disabled workers are less valuable and less productive, and that, if such workers are to be integrated in the open labour market, employers need to be obliged to hire them, and sometimes even financially compensated for doing so. Numerous employers have taken their cue from the legislation, and accept these assumptions. This is reflected in the fact that many employers resist the idea of, and obligations under, quota systems, and frequently “buy” themselves out of their obligation where this is an option, preferring to employ a largely non-disabled workforce. The history of the European quota systems amply demonstrates that an employment system which is based on the idea that the protected group of workers are inferior cannot achieve permanent and significant success, since employers will attempt to evade their obligations to employ such workers. Anti-discrimination legislation, in contrast, is based on the assumption that disabled workers are as good as their non­ disabled counterparts, and, given the appropriate non-discriminatory environment, are able to successfully compete for jobs on their merits. This is the background to the reassessment of disability employment policy which is occurring in some European countries, and the European Community, at present. The following section involves an examination of disability anti-discrimination legislation, the assumptions which underlie it, and examples of how such laws have been implemented outside Europe. n. A n A lternative A pproach: A nti-D iscrimination Legislation

Anti-discrimination laws have long been part of the legislative package used to promote the employment of and equal pay for women in Europe, and some countries have also adopted this approach with regard to racial, ethnic and religious minorities.31 Until recently this 31. (Eng.).

See, e.g., Sex Discrimination Act, 1975, ch. 65 (Eng.); Race Relations Act, 1976, ch. 74

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approach was not considered with regard to people with disabilities in Europe. There are three possible reasons for this. First, policy makers may have felt that the existing quota systems were functioning (or could be made to function) adequately. Second, policy makers favoured a voluntary approach, providing support and financial incentives for employers, rather than a further attempt at obligation. Last, and perhaps most significantly, policy makers did not perceive discrimination to be a barrier to employment for people with disabilities,32 and believed that disabled people found it harder to gain employment because they were simply less efficient workers. Outside Europe some policy makers have adopted a different approach. A number of countries have recognised that discrimination is a major problem facing disabled people, and have responded by adopting anti-discrimination legislation. The United States has had some form of disability anti-discrimination law since 1973, and in 1990 adopted a comprehensive statute, the Americans with Disabilities Act.33 This statute has attracted a great deal of attention from legislators and activists in Europe. A number of other countries, including Canada and Australia, have also adopted anti-discrimination laws, which are based on the same principle but which take different forms. Two specific examples of disability anti-discrimination legislation outside Europe are considered below. Reference is made to how the jurisdictions involved have attempted to deal with the two problems of defining disability and discrimination. The last section of the paper will consider to what extent those European countries which have adopted such legislation (or which are considering doing so) have emulated these examples, and the prospects of a European Community disability antidiscrimination instrument.

32. For example, in 1991 the Dutch Government refused to add disabled people to a draft amendment to the Algemene Wet Gelijke Behandeling (General Equal Treatment Law, now contained in the Law of March 2, 1994, Stb. 230 as amended) which listed groups which could not be discriminated against. When challenged on this the government justified its decision on the grounds that disabled people in the Netherlands did not experience discrimination. See PAULINE VERSTEEGH, Gesetzentwurfschliefit beh inderte Burger aus, 3 ZEITSCHRIFT DERBUNDESARBEITSGEMEINSCHAFT H ilfe FOR BEHINDERTE 14 (1992). In February 1993, the Dutch Parliament also refused to amend the Algemene Wet Gelijke Behandeling in this manner. The Act now refers to equal treatment of persons irrespective of religion, convictions about life, political opinions, race, sex, nationaility, hetero- or homosexuality or civil status. 33. See infra note 37.

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A. Assumptions Underlying Disability Employment Anti-Discrimination Legislation

There are two basic assumptions underlying disability employment anti-discrimination legislation: (1) in most cases, disabled workers are as able, as productive and as efficient as non-disabled workers, and (2) that it is discrimination, in the forms of unjust and incorrect assump­ tions about ability and disability, and physical barriers and inflexible work patterns and structures, which have led to the exclusion of large numbers of disabled people from (high levels of) employment. If this discrimination could be eliminated, disabled people would be able to compete for jobs on an equal basis, and win them on their merits. Unlike quota systems, which are a form of positive action, and which seek to put disabled people in a better position that their non-disabled peers, anti-discrimination legislation merely seeks to create a “level playing field.” Such legislation does not aim to give disabled people an advantage over non-disabled people—it aims to put both groups in the same position, so that a fair competition can occur. If, in that fair competition, the disabled person does not win the job or promotion, that individual has no remedy under anti-discrimination law and the employer will have committed no offence. The assumptions and principles underlying disability anti-discrimination legislation are clearly the same as those which are at the heart of sex, race, and all other forms of anti-discrimination laws. However, while it has proved possible to use similar (and at times, practically identical) legislative frameworks and approaches for sex and race antidiscrimination laws,34 this is not necessarily the case with regard to disability. Disability, unlike sex and race, can affect an individual’s ability to carry out a job in the standard way, and in certain cases can actually render an individual unable or unsuitable for a particular job. Disability anti-discrimination legislation needs to be able to recognise this problem, and to produce a definition of discrimination which does not include exclusions or dismissals which occur where an individual is genuinely unable to perform the job as a result of a disability. However, if the legislation is to be effective it must also require that employers determine if an individual really is unable to do the job, and to adapt the workplace or work rhythm where this would eliminate the difficulty. 34. See, e.g., Sex Discrimination Act, 1975, ch. 65 (Eng.); Race Relations Act, 1976, ch. 74 (Eng.). See also Civil Rights Act of 1964, 42 U.S.C. § 2000e (1995).

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A second problem facing policy makers and drafters of legislation is the production of a definition of the protected class. While identify­ ing gender or ethnicity is usually simple, this is not always true of a disability. Disability exists on a continuum, with some individuals being more disabled than others. Furthermore, an individual can be incorrectly assumed to be disabled, or have been disabled in the past, and be discriminated against as a result. If legislation is to be successful it needs to address these challenges. B. The United States The United States was one of the first countries to adopt disability anti-discrimination legislation. Following the adoption of the Civil Rights Act of 196435 which proscribes discrimination on the grounds of race, colour, religion, sex and national origin, many people, including disabled people and legislators, began to see disability in a similar light. They responded by campaigning for, and adopting, disability antidiscrimination laws. The first such statute was the Rehabilitation Act of 1973.36 Title V of this Act is concerned with eliminating employ­ ment discrimination. The federal government, programmes and activi­ ties supported by federal funds, including practically all hospitals and schools, and firms contracting with the federal government, are covered by this Title. Following the introduction of the Act, disability activists lobbied vociferously for its effective implementation and for the extension of the anti-discrimination requirement to employers in the private sector. These efforts culminated with the adoption of the Americans with Disabilities Act (ADA) in 1990.37 This statute not only extends the anti-discrimination principle to all private employers with fifteen or more workers, but it also prohibits discrimination on the grounds of disability in housing, public accommodation, education, transport, communication, recreation, institutionalisation, health services, voting and access to public services. The ADA is therefore a compre­ hensive piece of legislation which recognises that disability discrimina­ tion pervades all areas of society and cannot be tackled on a piecemeal basis. The ADA adopts a very broad definition of the protected group. An individual is regarded as having a “disability” for the purposes of 35. Title VII of the Civil Rights Act of 1964 deals with employment discrimination. See 42 U.S.C. § 2OOOe. 36. Pub. L. No. 93-112, 87 Stat. 390 (codified at 29 U.S.C.A. § 791 (1995)). 37. Pub. L. No. 101-336, 104 Stat. 327 (codified at 42 U.S.C.A. §§ 12101-213 (1995)).

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the legislation if he or she falls under one of the following three categories: 1. the individual has “a physical or mental impairment that substantially limits one or more of the major life activities of such individual;”38 2. the individual has a record of such an impairment; or 3. the individual is (erroneously) regarded as having such an impairment.39 In light of the focal role which the concept of “impairment” plays in this definition, it is worth elaborating on briefly. Regulations have defined the term “physical or mental impairment” as “a physiological disorder or condition . . . or a mental or psychological disorder.”40 The regulations give examples of conditions which amount to “a physical or mental impairment,” but do not provide an exhaustive list of such conditions. However, it is clear from case law that “impair­ ment” does not include characteristics such as hair colour, or lefthandedness, although these attributes could conceivably expose an individual to employment discrimination.41 The remaining key terms contained in this definition have also been further elaborated in case law and government regulations.42 The first prong of the definition covers those people who have traditionally been labelled as “disabled,” and who would, in many cases, be eligible for quota protection if they lived in Europe. The second and third prongs are much broader, and encompass individuals who are not generally recognised as disabled under European quota legislation. The second prong recognises that people who have recovered from a disabling condition, such as cancer or a mental health problem, may nevertheless be exposed to discrimination on the basis of their medical history, and is designed to protect such people. The third prong covers those people who are treated as if they have a disability. In defining the protected group so broadly, Congress has “acknowledged that society’s accumulated myths and fears about disability and disease are as 38. For fuller treatment of the concept of an impairment “that substantially limits one or more of the major life activities” of an individual, see E.E. Black, Ltd. v. Marshall, 497 F. Supp. 1088, 1090 (D. Haw. 1980). This case, and other cases mentioned below, are based on the Rehabilitation Act of 1973 which uses exactly the same key terms as the Americans with Disabilities Act. For a detailed examination of all the cases referred to in this article, see WADDINGTON, supra note 29. 39. Americans with Disabilities Act, 42 U.S.C.A. § 12102. 40. 45 C.F.R. § 84.3(j)(2)(i) (1989); 29 C.F.R. § 1630.2(h) (1992). 41. See Tudyman v. United Airlines, 608 F. Supp. 739 (C.D. Cal. 1984) (concluding that over­ weight people are not protected as disabled). 42. For further information see W addington , supra note 29.

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handicapping as the physical limitations that flow from actual impair­ ment.”43 In order to benefit from the employment protection provided by the Act, the “disabled” individual must be qualified for the job in question. The Act explains that this means that the individual concerned must be able to perform the “essential functions of the job,”44 following the making of a “reasonable accommodation,” if necessary.45 A job function is regarded as “essential” if it is one of “the fundamental job duties of the employment position.”46 A “reasonable accommodation,” meanwhile, is any modification or adjustment that is effective in allowing an individual with a disability to perform the “essential functions” of the job. The reasonableness of the accommodation does not, therefore, refer to its limited cost or inconvenience to the employer, but rather to its potential to provide equal opportunity, reliability and efficiency. Employers are obliged to make such accommodations, unless it would cause them “undue hardship.”47 This “hardship” could be based on cost, or on some other factor, such as jeopardizing health and safety. In making these determinations employers are required to engage in an individualised analysis, and not to make assumptions about what an applicant or employee can and cannot do. The qualification requirement excludes from the protection of the Act disabled people who are genuinely unable to perform the job in question, whether because they lack the required academic or work experience, or skills, or because of an impairment which cannot be accommodated in any way.48 Employers are therefore not obliged to 43. See School Bd. of Nassau County v. Arline, 480 U.S. 273, 284 (1987). 44. 42 U.S.C. § 12111(8) (1995). For elaboration of “essential functions of the job” see also Treadwell v. Alexander, 707 F.2d 473,476 (11th Cir. 1983); Davis v. Frank, 711 F. Supp. 447,453-54 (N.D. 111. 1989); Ackerman v. Western Elec. Co., 643 F. Supp. 836, 846-47 (N.D. Cal. 1986), ajfd, 860 F.2d 1514 (9th Cir. 1988). 45. 42 U.S.C. § 12111(9) (1995). See also Southeastern Community College v. Davis, 442 U.S. 397, 408 (1979) (discussing “reasonable accommadatation”). 46. 29 C.F.R. § 1630.2(n) (1992). The regulations accompanying the Americans with Disabilities Act of 1990 elaborate on this concept further. They list the following reasons why a function may be considered “essential”: (1) the reason the position exists is to perform that function; (2) there are a limited number of employees among whom the performance of that job function can be distributed; (3) the function is highly specialized so that the incumbent in the position is hired for his or her expertise or ability to perform that particular function. 29 C.F.R. § 1630.2(n)(2) (1992). However, these three factors are not an exhaustive list. See e.g., WADDINGTON, supra note 29. 47. 42 U.S.C. § 12111(10) (1995). See also Dexler v. Tisch, 660 F. Supp. 1418, 1427-28 (D. Conn. 1987); Nelson v. Thornburgh, 567 F. Supp. 369, 379-80 (E.D. Pa. 1983), qff'd, 732 F.2d 146-47 (3d Cir. 1984), cert, denied, 469 U.S. 1188 (1985); WADDINGTON, supra note 29. 48. As far as that particular job is concerned.

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employ people who cannot do the job, simply because they are disabled. On the other hand, employers are obliged to make a “reasonable accommodation” for a disabled job applicant or worker, if this would enable the (prospective) worker to perform the “essential functions” of the job. Failure to do so amounts to disability discrimination, as does the rejection or dismissal of a qualified candidate or employee because he or she has a disability or because he or she requires a reasonable accommodation. These two requirements demonstrate that the ADA is seeking to achieve a balance between the needs of employers and those of disabled people. Evidence of this balance is further provided by the limitation on the “reasonable accommodation” requirement found in the “undue hardship” clause. Employers are expected to make accom­ modations, but not where this threatens their business in any way.49 C. Canada Despite the similarities between the Canadian and American legal culture, Canadian anti-discrimination law has developed in a quite distinct manner. Canadian measures to combat discrimination can be divided into two categories: first, human rights instruments that adopt an individualistic approach, and second, laws that require proactive measures to combat disadvantage and discrimination, and which take a more group-oriented approach. Notably, both kinds of instruments are not directed exclusively at people with disabilities, although disabled people are always specifically mentioned as a protected group. At the federal level the most notable human rights instruments are the 1982 Charter of Rights and Freedoms,50 which has constitutional status, and the Canadian Human Rights Act 1985.51 Section fifteen of the Charter guarantees every individual “the right to equal protection and equal benefit of the law without discrimination,” and covers discrimination based on “mental or physical disability.”52 The concept of disability is not defined further. The Charter allows (but does not re­ quire) positive action in favour of disadvantaged groups, and has limited coverage since it only applies to federal and provincial legislation and activities.53 49. In fact, something less than a threat to the continuation of the business may satisfy the undue hardship clause. See generally WADDINGTON, supra note 29, at 170-77; Waddington, supra note 30, at 367-95. 50. Constitution Act, R.S.C. sched. B, No. 44 (1982) (Can.). 51. Canadian Human Rights Act, R.S.C. ch. H-6 (1985) (Can.). 52. Constitution Act § 15(1). 53. See id. § 15(2).

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The Canadian Human Rights Act 1985 proscribes a number of grounds of discrimination, including disability,54 and prohibits certain discriminatory practices.55 The Act covers all federal government departments, agencies and Crown Corporations and businesses and industries which are under federal jurisdiction. Like the Charter, the Canadian Human Rights Act allows for positive action to eliminate or reduce disadvantages.56 An individual is regarded as disabled if he or she has “any previous or existing mental or physical disability” and this includes “disfig­ urement, and previous or existing dependence on alcohol or drugs.”57 This is not a complete definition of disability since it leaves unclear whether conditions such as epilepsy are covered, and as a result it has led to much litigation. It is a discriminatory practice for an employer to base an employment decision upon an individual’s disability unless that decision is based on a “bona fide occupational requirement” (BFOR).58 The Supreme Court of Canada has held that an employer must meet two criteria before relying on a BFOR test.59 First, the employer must show that the requirement was imposed in good faith; and second, that the requirement is objective and related to the “efficient and economical performance of the job without endangering the employee, his fellow employees and the general public.”60 The BFOR test is a means of ensuring that employers will not be obliged to hire disabled people who are unable to perform the job, and that unfavour­ able employment decisions based on a BFOR will not be regarded as discrimination. However, the BFOR test has been criticised for failing to adequately protect the interests of disabled people 61 It has been argued that the objectivity test is not always fulfilled, and that the courts and Human Rights Board of Inquiries do not always scrutinise the employers’ claim that a BFOR exists in sufficient detail.62 Further­ more, courts have sometimes found that only a very low level of increased risk to health or safety can justify a BFOR.63 Third, the 54. Canadian Human Rights Act § 2. 55. See id. §§ 5-14. 56. See id.. § 17. 57. Id. § 25. 58. See ON TARGET? CANADA’S EMPLOYMENT-RELATED PROGRAMS FOR PERSONS WITH D isabilities 37 (Roeher Inst., rev. ed. 1993) [hereinafter O n TARGET?]. 59. Ontario Human Rights Comm’n v. Borough of Etobicoke [1982] S.C.R. 5536,5536. See also On Target?, supra note 58, at 37 n.23. 60. Borough of Etobicoke [1982] S.C.R. 5537. 61. See ON T arget?, supra note 58, at 38. 62. Id. 63. Bhinder v. Canada Nat’I Rys., [1985] S.C.R. 6489,6491 (Wilson, J., concurring); see gener­ ally ON TARGET?, supra note 58, at 38 & n.26.

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BFOR is usually framed with regard to the pre-existing job descrip­ tion.64 The criteria therefore do not take account of the fact that although a disabled person may not be able to do the job in the manner described in the job description, he or she can still cany out the job in an acceptable alternative way.65 A further criticism relates to the fact that society often fails to provide disabled people with the opportunities to acquire the skills needed to meet BFOR criteria,66 and the legisla­ tion does not address this issue. One final issue is that it is not clear to what extent an employer is obliged to make a “reasonable accommodation” in order to enable the disabled individual to meet the job requirements.67 The Canadian Human Rights Act does not impose an obligation to make such accommodations. Therefore, if an employer can show that a disabled individual cannot meet a BFOR, the matter is closed. There is no duty under the act to establish whether a reasonable accommodation would allow the BFOR to be met and, if so, to make such an accommodation. However, in the past the courts have sometimes found that a duty to accommodate does exist.68 Meanwhile, the Canadian Human Rights Commission has been calling for the incorporation of a clear legislative duty to accommodate in the Human Rights Act.69 The second form of legislative intervention, which in addition to the non-discrimination principle, requires active measures to combat disadvantage, is the Employment Equity Act 1995.70 This new Act incorporates employment equity provisions from the Financial Adminis­ tration Act (which applies to public service employers) and the Employment Equity Act 1985 (which covers federal undertakings and employers under federal jurisdiction with 100 or more employees).71 The coverage and obligations imposed under the new Act differ little from those under the two earlier measures. However, the 1995 Act does provide for new enforcement provisions and gives the Canadian Human Rights Commission a greater role in monitoring and enforcing the legislation.

64. 65. 66. 67.

See O n TARGET?, supra note 58, at 39. Id. Id. at 40. Id. at 40-45. 68. Central Alta. Dairy Pool v. Alberta Human Rights Commission [1990] D.L.R. 417. See ON T arget ?, supra note 58, at 41 no.30. 69. C anadian H uman Rights C om m ission , A nnual R eport (1995). 70. This was Bill C64, which received royal assent on December 15, 1995. 71. R.S.C., ch. 23, 2d Supp. (1985) (Can.).

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Four designated groups are protected by the Act, including “persons with disabilities.”72 Individuals who consider themselves to be disadvantaged, or who believe that the employer considers them to be disadvantaged because they have an impairment, and individuals who identify themselves, or agree to be identified by the employer, as disabled, are also covered. Under the Act, employers are obliged to identify and eliminate discriminatory employment practices and promote proper representation of disabled people in their workforce. This obligation involves promoting positive employment practices and policies, making reasonable accommodations, as well as preparing an annual plan which sets the goals to be achieved in implementing employment equity. Employers also must file a report containing details of their present employment pattern with regard to the designated groups. Private employers must file their reports with Human Resources Development Canada, while public sector employers report to the President of the Treasury. Ministers for both departments must present an annual consolidated report to Parliament. The Canadian Human Rights Commission is responsible for enforcing the employers’ obligation under the Act, and is authorised to conduct an audit of every covered employer. If the audit reveals noncompliance, the Commission can take further steps, such as negotiating a written undertaking to improve the situation, issuing a binding order, or requesting a review by the Employment Equity Review Tribunal. As a result of these measures the Employment Equity Act 1995 has “more teeth” than the 1985 Act However, the effectiveness of this monitoring and enforcement mechanism will be determined by the resources which are made available to the already over-worked Human Rights Commis­ sion. Canadian federal human rights instruments are at present an important, but somewhat limited means of combatting disability discrim­ ination. They take a static view of the problem, and fail to recognise that disability at times requires that active measures, such as accommo­ dations, be taken to counteract previous and present disadvantage. Given the limiting nature of the physical environment for some people with disabilities, this additional requirement takes on an even greater significance than it does for most other disadvantaged groups. The new federal Employment Equity Act rectifies this legislative failure to some extent, but once again its effectiveness will be determined by the ability of the Canadian Human Rights Commission to monitor the covered 72. The other three groups are women, aboriginal people and visible minorities.

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employers. Furthermore, its potential impact is reduced significantly by its limited coverage, covering as it does only eight percent of the Canadian workforce, or 900,000 employees.73 It is notable that the purpose of all these instruments is to protect all (designated) minorities and not just disabled people. The problem with this approach is that the discrimination suffered by those with disabilities is different in form from that suffered by other groups, and proactive measures, in the form of accommodations, are at times required to eliminate disability discrimination. This weakness is demonstrated by the difficulty of applying the BFOR test to all disabled people. A comprehensive instrument which deals exclusively with disability discrimination may therefore be a better option. It is also notable that each of the instruments adopts a different definition of disability, which could potentially lead to confusion, particularly since all the instruments deal with disability discrimination. Although each of these definitions appears to be fairly broad, they are also rather vague, possibly leaving many people uncertain as to their protection or responsibility under the law. It should be noted that the pictures painted above are only partial, since practically all American states and all Canadian provinces and territories have passed laws directed at, inter alia, disability discrimina­ tion, which at times provide greater protection than the federal measures already described. These laws are particularly important in Canada given the limited scope of the federal instruments. III. The Emergence o f a New Trend in Europe The past few years have seen increasing attention being paid by European disability activists and policy makers to the problem of disability discrimination and the role which legislation can play in combatting this. France was one of the first European countries to extend the protection of the law to victims of disability discrimination. More recently the Constitution in Germany has been amended, and the equal protection clause now explicitly names disabled people as a protected group. Meanwhile, legislators in Britain have recently adopted a law addressing disability discrimination and Irish legislators are on the verge of doing so. These responses reveal three different approaches to combating disability (employment) discrimination in Europe through legislation. While Germany has opted, in the first 73. A ct from

T reasury B oard of C anada S ecretariat , a P ublic S ervice P erspective (1996).

O verview of the N ew E mployment equity

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instance, for constitutional law, Britain and Ireland have favoured the civil law, and France has resorted to the criminal law. The matter has also attracted significant attention at the European Community level, and both the Commission of the European Communities and the European Parliament have proposed that the 1996 Intergovernmental Conference amend the Treaty on European Union to give the Community the competence to take action to combat disability discrimination. These developments are examined in further detail below. A. Constitutional Law: The Federal Republic of Germany Prior to 1994, the German Basic Law (Grundgesetz) or Constitution contained no provision specifically favouring people with disabilities. Article three, dealing with equality before the law, read as follows: 1. All people are equal before the law. 2. Men and women have equal rights. 3. Nobody shall be prejudiced or favoured because of their sex, birth, race, language, national or social origin, faith, religion or political opinions.74

On October 27 the Basic Law was amended, and to the last paragraph of Article 3.3 was added the statement that “Nobody shall be disadvan­ taged on the basis of disability.”75 Since German constitutional norms can have Drittwirkung76 such an unambiguous provision has the potential to affect both public (in­ cluding legislative) and private behaviour. The Federal Constitutional Court has accepted the doctrine of mittelbare drittwerkung, which is akin to the concept of “indirect effect.”77 The Federal Labour Court, however, has gone further, and made reference to unmittelbare drittwirkung, which is similar to the concept of horizontal direct effect.78 At the public level the new provision therefore binds the legislature, the executive, and the administration, and applies to the 74. P ress and Information O ffice F ederal R epublic of G erm any (1994).

of the

F ederal G overnment , B asic L aw

for the

75. Gesetz zur Anderung des Grundgesetzes, v. 27.10.1994 (BGB1.1 S.3146) (author’s transla­ tion). Original: “Niemand darf wegen seiner Behinderung benachteiligt werden.” 76. This term has no concise English translation. It roughly equates to the concept of conferring rights on (natural and legal) persons which rights can be relied on before national courts. 77. This is the doctrine accepted by the European Court of Justice in Case C-106/89 Marleasing SA v La Comercial Intemacional de Alimentacion SA, 1990 E.C.R. 1-4135. In European Community law the concept of “indirect effect” is also sometimes referred to as “Directive Conform Interpretation.” This is because it requires that national laws be interpreted so as to comply with the Community directives on which they are based or which cover the same area. 78. Horizontal direct effect is also a term frequently used in European Community law. It refers to the situation whereby Community norms—typically articles in the Treaty on European Union—confer rights on individuals which they can rely on both against the state and against (natural and legal) persons.

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Federal Government, the Lander79 and Gemeinden,so as well as to all public servants acting in an official capacity. There is an obligation to ensure that new statutes, regulations and administrative norms do not discriminate against disabled people, and to amend existing provisions which have that effect, and for the courts to interpret instruments and hand down rulings which do not discriminate solely on the grounds of disability. This could mean that controversial rulings, such as the Flensburg decision,81 in which a district court held that the value of a holiday had been reduced because the plaintiffs had to share hotel meal times with a group of disabled people, might now be unconstitutional. The provision has already had consequences at the level of the Lander, where legislators have inserted clauses into new public transport acts to ensure that the needs of people with mobility disabilities are taken into account in purchasing vehicles and constructing facilities.82 However, this is one of the rare examples of constitutional change provoking legislative change, and up until now the new non-discrimination clause has had little practical effect. The new constitutional provision cannot in the normal course of events, oblige the legislature to adopt a disability (employment) antidiscrimination law. This would be the case only if it could be shown that under the present system disabled people continue to be disadvan­ taged, and that an anti-discrimination law was the only means of eliminating this disadvantage.83 Nevertheless, given the extent to which constitutional norms penetrate the German legal system, this amendment clearly contains the potential to lead to improvements in the situation of disabled people. In this sense it is more important than the Canadian Charter of Rights and Freedoms which has a much more restricted coverage. However, there are a number of major problems with the German approach and the constitutional amendment, on its own, is insufficient to make major inroads into the problem of disability (employment) discrimination. The new provision is a simple statement which fails to define the key concepts of “disadvantaged” and “disability.” American and Canadian experiences reveal that disability employment discrimination is a complicated phenomenon, and that legislators must attempt to define 79. The sixteen federal states. 80. Local municipalities. 81. AG Flensburg, NEUE JUR1STISCHE WOCHENSCHRIFT 272 (1993). 82. Invisible Citizens: Disabled Person’s Status in the European Treaties, Report for the European Day of Disabled Persons, European Parliament (D/1995/7560/2) (1995). 83. Gunther Jurgens, Grundrechtfar Behinderte, 1995 NEUE ZEITSCHRIFT FOR VERWALTUNGSRECHT, Heft 5, 452-53.

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when an employer is obliged to make a “reasonable accommodation” for a disabled individual, and when, because of the existence of an “undue hardship” or BFOR test, this requirement does not exist and an unfavourable decision will not amount to discrimination. The German Constitution, perhaps understandably, given the fundamental nature of the norms which it contains, fails to deal with these important points. If the principle of disability non-discrimination is truly to become part of the German legal culture, the Constitution needs to be backed-up by a thorough anti-discrimination law which clearly defines both the group of beneficiaries and the nature of the prohibited act. This is currently being lobbied for by disabled people in Germany, who, through a “Forum of Disabled Lawyers and Judges,” have produced a draft proposal which includes definitions of the concepts of “disability” and “discrimination.” B. Civil Law: The United Kingdom and the Republic of Ireland 1. The United Kingdom The 1980s saw numerous parliamentary attempts, to secure the adoption of some form of disability anti-discrimination legislation in Britain. These proposals all took the form of private members’ bills, and universally failed to secure the support of the government. In 1994, in a very controversial move, the then-Minister for Disabled People, with the support of his backbench colleagues, “talked out” a widely supported bill. As a result of the uproar which followed this uncoopera­ tive stance, the government agreed to introduce and support a disability discrimination bill.84 Although widely criticised, not least of all for its enforcement mechanism, the bill passed all three readings in both houses of parliament, and received the royal assent on November 8, 1995. The Disability Discrimination Act 1995 addresses disability discrimination in the areas of employment, education, transport, as well as a number of other fields such as the provision of goods, facilities and services, and premises.85 With regard to employment, employers with twenty or more employees are prohibited from discriminating against disabled people in respect of selection, recruitment, terms under which 84. It was clear from the beginning that the government sponsored bill was going to be much less “radical” than most of the private members’ bills which had been introduced in the late 1980s. Most of these bills had been closely modelled on the Americans with Disabilities Act. 85. See Disability Discrimination Act, 1995, ch. 50 (Eng.).

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employment is offered, terms and conditions of employment, opportuni­ ties for promotion, transfer and training, and dismissal.86 The concepts which are of vital importance for an understanding of the legislation, and which will heavily influence its effectiveness, are, as noted earlier, disability and discrimination. The Act defines a person with a disability as someone who “has a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities.”87 Furthermore, with regard to employment, an individual who “has had a disability,” which has presumably ceased to exist at the time the alleged discrimination occurred, is also covered, and is to be treated in the same way as an individual who has a presently existing disability.88 This definition, like the definition contained in the Americans with Disabilities Act, is intricate, and requires further elaboration in order to be fully comprehended. To a limited extent this is done in the first Schedule to the Act, which provides some insight into the meaning of the key phrases contained in the definition, and also allows for additional explanatory regulations to be adopted. After a period of consultation, such draft regulations were presented to the British Parliament in June 1996 and adopted in July 1996.89 The first phrase in the definition which requires further comment is the concept of “impairment” itself. In fact, this concept is not defined in the Schedule to the Act, and the Code of Practice, as the explanatory regulations are called, throws little light on the matter. The Code simply states that impairment “covers physical or mental impairment; this includes sensory impairments such as those affecting sight or hearing.”90 The drafters of the explanatory regulations accompanying the Americans with Disabilities Act found it necessary to provide more detailed guidance on precisely the same term. The concept of “normal day-to-day” activities also plays a crucial role in the definition. The Schedule provides an exhaustive list of activities which fall into this category, and these include mobility, manual dexterity, memory, and ability to concentrate, learn or understand.91 The Code 86. See id. art. 4(l)-(2). 87. See id. art. 1(1). 88. This also applies to Part III of the Act, entitled Discrimination in Other Areas, which covers goods, facilities, and services, premises and enforcement

8 9. D epartm ent for E ducation and em ploym ent , C ode of P ractice for the E limination of D iscrimination in the Field of E m ployment A gainst D isabled P ersons or P ersons W ho H ave H ad a D isability (1996) (Eng.) [hereinafter C ode of P ractice ].

90. Id., annex 1, para. 4. 91. See Disability Discrimination Act, 1995 sched. 1, art. 4(1). Other listed activities are physical coordination; continence; the ability to lift, carry, or otherwise move everyday objects; speech, hearing,

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of Practice reiterates this point.92 For the “impairment” to amount to a “disability” it must have a “substantial and long-term effect” on the ability to carry out such activities. “Substantial” is defined in Code of Practice as “something which is more than a minor or trivial effect,”93 while the Schedule to the Act defines “long-term” as an impairment which has lasted, or is expected to last, twelve months, or which is likely to last for the rest of the life of the affected person. The definition of “disability” has been criticised by trade unions as being too complicated and difficult to understand, and for focusing on what a person cannot do, rather than recognising that in many cases it is socially created barriers and attitudes which restrict individuals with disabilities, and not the impairment itself which creates problems.94 In spite of this it is clear that some thought has gone into producing this definition of “disability,” but arguably not enough thought. It seems that without further clarification this definition will create confusion and uncertainty, leaving many employers and (potential) employees unsure as to whether an individual is covered by the Act or not. The concept of employment discrimination is equally complicated. The Act states that an employer discriminates against a covered person if “for a reason which relates to the disabled person’s disability, he treats him less favourably than he treats others to whom that reason does not or would not apply,”95 and this treatment cannot be justified. A failure to comply with the duty to make “reasonable adjustments” also amounts to discrimination under the Act, where this failure cannot be justified. The duty to make “adjustments” applies where arrangements made by or on behalf of an employer, or where any physical feature of the premises occupied by the employer, places the disabled person concerned at a “substantial disadvantage” in comparison with persons who are not disabled.96 In such a situation, an employer is under an obligation to take reasonable steps to prevent the disadvantage from or eyesight; and the perception of the risk of physical danger. See id. Interestingly, the list does not include breathing, which is an activity which can be problematic for those with respiratory disorders such as asthma. This exhaustive list can be expanded or restricted through regulation. 92. The Code of Practice states: “The test of whether an impairment affects normal day-to-day activities is whether it affects one of the broad categories listed in Schedule 1 of the Act.” Id., annex 1, para. 10. 93. Id., annex 1, para. 6. 94. Elizaeth McEvoy, Unpublished Paper Presented to the European Seminar on the Reform of the Labour Market, May 1995, La Manga, Spain. This criticism was made before the Code of Practice was published. However, given that the Code does not seem to provide a great deal of elaboration, the criticism remains valid. 95. See Disability Discrimination Act, 1995, ch. 50, art. 5(1 )(a) (Eng.). 96. See id. art. 6(1).

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occurring. The Act gives some examples of the adjustments which employers may be required to make, including “making adjustments to premises,” “allocating some of the disabled person’s duties to another person,” and “acquiring or modifying equipment.”97 As noted, employers are not under an absolute duty to make such adjustments, but must do so only where such action is “reasonable.” Certain factors may be considered in determining whether it is “reasonable” to require an employer to make an “adjustment:” the extent to which the adjustment “would prevent the effect in question;” “the extent to which it is practicable for the employer to take the step;” the costs of the adjustment; the resources of the employer; and the availability of financial assistance.98 An employer is entitled to “discriminate” against a disabled person, either by treating him or her less favourably, or by refusing to make a “reasonable adjustment,” where the discriminatory behaviour in question is “justified.” The Act itself states that discriminatory behaviour is “justified” “if the reason for the failure [to behave in a non-discriminatory way] is both material to the circumstances of the particular case and substantial.”99 According to the Code of Practice, “[t]his means that the reason has to relate to the individual circumstances in question and not just be trivial or minor.”100 The Code confusingly goes on to note that “[l]ess favourable treatment is therefore justified if the disabled person cannot do the job concerned, and no adjustment which would enable the person to do the job (or another vacant job) is practica­ ble.”101 This suggests that “less favourable” or discriminatory behav­ iour is only “justified” where the disabled person cannot do the job in question, and no adjustments can be made to remedy this situation. However, it is hard to see why the rejection (or dismissal) of an unqualified job applicant (or worker) in these circumstances should be regarded as disability discrimination. The definition of discrimination included in the Act makes it clear that such a scenario is not prohibited by the Act. This inadequacy relating to the clarification of the concept 97. See id. art. 6(3). Other examples which are listed are: “transferring [the disabled individual] to fill an existing vacancy;” “altering his working hours;” “assigning him to a different place of work;” “allowing him to be absent during working hours for rehabilitation, assessment or treatment;” “giving him, or arranging for him to be given, training;” “modifying instructions or reference manuals;” “modifying procedures for testing or assessment;” “providing a reader or interpreter;” and “providing supervision.” Id. 98. See id. art. 6(4). 99. See id art. 6(4) and 6(5). 100. C ode of P ra c tic e , 4.6. 101. Id., 4.9.

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of “justified discrimination” is disturbing, since the concept is crucial to the Act. The enforcement mechanism established under the Disability Discrimination Act is closely modelled on that applying to the two other anti-discrimination acts dealing with sex and race.102 However, unlike the earlier statutes, the Disability Discrimination Act crucially fails to provide for a central monitoring and enforcement body.103 The Act does, however, provide for a National Disability Council,104 but its role is simply to advise the Secretary of State on the operation of the Act and on the elimination of disability discrimination. Its members are appointed by the Secretary; this has led some disability activists to question its independence. As a result of the absence of an effective enforcement agency, the Act only can be enforced by individual disabled people seeking to rely on the rights provided by the statute before industrial tribunals. The Disability Discrimination Act 1995 is more thorough than its German and French counterparts.105 It attempts to address the prob­ lem of defining disability and discrimination, and recognises that some balance must be sought between the interests of employers and the interests of disabled people. However, given the lack of clarity of so many of the Act’s key terms, ranging from “impairment” to “justified” unfavourable treatment, it is questionable whether the Act can achieve that balance. In spite of the adoption of a Code of Practice to accompany the employment sections of the Act, at least one major problem remains—the Act’s failure to provide for an effective monitoring and enforcement agency. Canadian and American law, and the Irish draft legislation106 all have recognised that disability discrim­ ination is a widespread phenomenon which affects groups, as well as individuals, and that such agencies are vital in order to ensure the effectiveness of anti-discrimination legislation. The absence of such a provision in the British Disability Discrimination Act can therefore be described as its “single greatest weakness.”107

102. See Sex Discrimination Act, 1975, ch. 65 (Eng.); Race Relations Act, 1976, ch. 74 (Eng.). 103. The two other acts are monitored and partly enforced by the Equal Opportunities Commission and the Commission for Racial Equality respectively. 104. See Disability Discrimination Act, 1995, ch. 50, sched. 5 (Eng.). 105. See supra III.A. and infra section III.C., respectively. 106. See supra section II, and infra section III.B.2. 107. Caroline Gooding, BLACKSTONE’S GUIDE TO THE DISABILITY DISCRIMINATION ACT 1995, at 53 (1995).

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2. The Republic of Ireland The Irish government has recently published proposals for an employment anti-discrimination act, the Employment Equality Bill,108 and is working on a second bill, the Equal Status Bill, which will cover discrimination and the provision of goods, services and facilities. Both proposals will attempt to tackle discrimination on a number of grounds, including gender, age, family status, marital status, membership of the travelling community, race, religion, sexual orientation and disability. The Employment Equity Bill, which was produced by the Department of Equality and Law Reform, is a lengthy document which provides, inter alia, a definition of disability and discrimination, and contains certain special provisions and exceptions relating specifically to dis­ ability. The bill includes a detailed medical-based definition of disabili­ ty,109 and covers, inter alia, “a disability which presently exists, or which previously existed but no longer exists, or which may exist in the future or which is imputed to a person.”110 The Irish Congress of Trade Unions, which commented on the proposal,111 criticised the definition as being based on a medical assessment rather than an abilityoriented assessment related to how a person functions at work. Their criticism is based on the fact that the impact of disability is not simply determined by a medical condition, but to a large extent is determined by an individual’s circumstances. The definition fails to recognise this. Disability discrimination is defined as a situation where “one person is treated less favourably than another is, has been or would be treated” on the grounds “that one is a person with a disability and the other either is not or is a person with a different disability (‘the disability ground’).”112 Article eight of the bill lists a number of areas covered by the unlawful discrimination provisions, including access to employment, 108. See Employment Equality Bill, 1996, Presented by the Minister for Equality and Law Reform (July 1, 1996). 109. See id. Art, 2. The complete definition is too long to reproduce here. The first two sections of the definition read as follows: “the total or partial loss of a person’s bodily or mental functions, including the loss of a part of the person’s body” and “the presence in the body of organisms causing, or likely to cause chronic disease or illness.” Id. 110. Id. 111. Irish C o n g re ss o f T ra d e U nions, O b serv a tio n s on th e D e p a rtm en t o f E q u a lity a n d L aw R eform P ro p o sa ls f o r E m ploym ent E q u a lity L eg isla tio n (Dec. 1994). 112. See Employment Equality Bill, 1996, art. 6(1), 6(g) (July 1, 1996). Other grounds referred to in this article are “the gender ground,” “the marital status ground,” “the family status ground,” “the sexual orientation ground,” “the religious ground,” “the age ground,” “the ground of race,” and “the travelling community ground.”

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conditions of employment, training or experience related to employ­ ment, promotion or re-grading, and the classification of posts. These areas are further elaborated in subsections to the article, so that, for example, with regard to access to employment: an employer shall be taken to discriminate against an employee or prospective employee . . . if the employer discriminates against employees or prospective employees— a) in any arrangements the employer makes for the purpose of deciding to whom employment should be offered; or b) by specifying, in respect of one person or class or persons, entry requirements for employment which are not specified in respect of other persons or classes of persons, where the circumstances in which both such persons or classes would be employed are not materially different.113

The double use of “discrimination” in the first paragraph, so that it reads “an employer shall be taken to discriminate against an employee . . . if the employer discriminates” suggests poor drafting. Nevertheless, this part of the bill contains a relatively thorough explanation of the specific areas of the employment relationship covered by the bill, addressing, in addition to the areas already mentioned, remuneration, job advertisements, discrimination by job agencies, and the provision and offering of vocational training courses.114 This part of the bill also contains a number of specific savings and exclusions, including the provision that the bill does not apply to individuals who are not fully competent to undertake, or fully capable of understanding, the duties attached to a position.115 To clarify matters however, the bill goes on to state that “a person who has a disability shall not be regarded otherwise than as ftilly competent to undertake, and fully capable of understanding, any duties if, with the assistance of special treatment or facilities, that person would be so fully competent or capable.”116 The fact that a person cannot perform the job adequately without an accommodation is therefore not to be interpreted as meaning that he or she is incompetent or incapable of doing that job per se, and is therefore not covered by the bill. However, this is the only provision in the bill which addresses the need to make accommodations to disabled workers in order to enable them to perform a job. It is unclear whether this article, as it is presently worded, is capable of conferring an obligation on employers to make 113. Id. art. 8(5). 114. See id. arts. 9-12. 115. See id art. 16(1). 116. Id. art. 16(3). However it is stated that this article is without prejudice to the “undue hardship” provisions contained in art. 35(4).

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such accommodations. If this were the intention, then a wording more reminiscent of that found in the Americans with Disabilities Act or British Disability Discrimination Act would have been more explicit. If it was not the intention, then this should also have been made expressly clear. The matter is further confused by a subsequent reference in the bill to undue hardship with regard to special treatment or facilities provided by employers. If adopted in its present form the matter will need to be resolved through Ministerial regulations provided for in Article 3(3) or Codes of Practice prepared by the Equality Authority.117 Otherwise, an undesirable situation will arise in which employers are unsure of their obligations and disabled people are unsure of their rights. Part III of the bill deals exclusively with equality between women and men, while Part IV contains specific provisions as to equality between other categories of persons. This Part covers the entitlement to equal remuneration, the automatic inclusion of a non-discriminatory equality clause in employment contracts where this is not otherwise included, indirect discrimination, and harassment in the workplace.118 This Part also includes a number of articles specifically dealing with differential treatment on the basis of disability. Some of the permitted behaviour, such as preferential treatment for reasons arising from disability and the provision of special facilities where these are important for the job performance or the work environment, will clearly benefit disabled workers.119 Other exclusions, however, are designed to limit the nature of the obligation imposed on employers. The bill states, for example, that disabled people can receive a different rate of remuneration compared with employees generally, if, by reason of disability, the employee is restricted in his working capacity.120 Furthermore, discrimination on the grounds of disability (and age) will be allowed “where it is shown that there is clear actuarial or other evidence that significantly increased costs would result if the discrimina­ tion were not permitted.”121 The most significant restriction on the obligation imposed on employers is contained in the “undue hardship” provision. Article 35(4) states: Nothing in this Part or Part II [Discrimination: General Provision, examined above] applies to discrimination against a person on the disability ground in relation to employment of any description if—

117. 118. 119. 120. 121.

See id. art. 69(1). See id. arts. 29-32. See id. art. 35(2). See id. 35(1). Id art. 34(3).

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a) that person would require special treatment or facilities in order satisfactorily to take part in the selection process or to undertake that employment; and b) the cost of the provision of that treatment or those facilities would give rise to undue hardship to the employer, having regard to all the relevant circumstances including, without prejudice to the generality, the matters specified in subsection (5).

The matters specified in Article 35(5) are “the nature of the treatment or facilities that would be required;” “the cost of the treatment or facilities and the number or persons who would benefit from them;” “the financial circumstances of the employer;” “the disruption that would be caused by the provision of the treatment or facilities” and “the nature of any benefit or detriment which would accrue to any persons likely to be affected by the provision of the treatment or facilities.”122 However, as mentioned above, it is not clear that there is any initial obligation on employers to provide “special treatment or facilities.”123 If there is such an obligation, then Article 35(4) and (5) can be regarded as attempts to balance that obligation, and the interests of employers in not occurring significant cost, against the interests of disabled people in gaining access to employment. This Article reflects concerns that are also embodied in American and Canadian laws. However the Irish Congress of Trade Unions does not feel that the balance has been established and criticised this section of the original proposal (which closely resembles Articles 35(4) and (5) of the bill) for the vagueness of many of the terms used, including the terms “undue hardship,” “disruption,” and “detriment.” As the Irish Congress of Trade Unions stated “success or failure in enforcing any such legislation depends on the degree of clarity of such terms and . . . they should not be open to use by employers to avoid their obligations in relation to the employment of people with disabilities.”124 The Congress also called for legislation to encourage employers to adopt a pro-active approach to eliminate discrimination. In spite of these difficulties, the bill provides for what appears to be a very effective monitoring and complaints procedure. Individuals who feel that they have been discriminated against under the Act may make a complaint to the Director of Equality Investigations at the Equality Authority.125 The Director has the power to investigate the complaint and to attempt to resolve the case through mediation, if 122. 123. 124. 125.

Id. art. 35(5). Id. art. 16(3).

I rish C ongress

of T rade

U nions , supra note 111 at 7.

Employment Equality Bill, art. 41.

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appropriate.126 If the Director finds that discrimination has occurred he or she may order redress, which can take the form of compensation, an order for equal remuneration, an order for equal treatment, or an order that a person or persons take specified action.127 Under certain circumstances an individual can bring the matter before the Labour Court (where dismissal is involved) or the Circuit Court (where it is alleged that Part III of the Act, dealing with sex discrimination, has been breached).128 In addition to the remedies available to the Director of Equality Investigations, the courts may order, inter alia, reinstatement.129 Furthermore, the Equality Authority can investigate cases where it appears that discrimination is being generally practised, discrimination has occurred against a particular person, or where it seems that there has been a failure to comply with an equal remunera­ tion clause or equality clause.130 Redress also may be ordered in these circumstances. The Irish government should be praised for providing such effective enforcement mechanisms in the Employment Equality Bill. The situation is in stark contrast to that found in the United Kingdom, where the government refused to support the establishment of a competent body that would provide the Disability Discrimination Act with “teeth.” Some final comments on the Employment Equity Bill also should be noted. The Irish government’s decision to propose a bill dealing with discrimination directed at a wide variety of groups seems to reflect the belief that the underlying problem is the same, and that all forms of employment discrimination can be dealt with in a similar way. This approach is also found in Canada. In fact, this may not necessarily be the case and, in spite of the inclusion of a specific section on disability discrimination, the idiosyncrasies of this kind of behaviour still may not have been dealt with adequately. The requirement concerning the need to make accommodations for disabled workers provides some evidence for this conclusion. On the other hand, the establishment of a single effective monitoring and adjudication system under the Employment Equity Bill may prove the strength of this approach. This enforcment mechanism will be applicable to all employers and individuals who experience discrimination, whatever its nature, and will provide the same remedies to all victims. This is a clear signal that all forms of 126. 127. 128. 129. 130.

See id. art. 42. See id. art. 46(1). See id. art. 41. See id. art. 46(2). See id. art. 49(l)(a)-(f).

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discrimination are viewed as unacceptable and are to be regarded in the same unfavourable light. This cannot be said of the situation in Britain, where sex and race discrimination are monitored and prosecuted far more effectively by the Equal Opportunities Commission and the Commission for Racial Equality, than disability discrimination will be by unassisted individual disabled people. C. Criminal Law: France In July 1990 the French Parliament adopted Law No. 90-602 concerning the protection of persons against discrimination on grounds of their state of health or their handicap.131 This law amended the Penal Code, and made it a criminal offence for providers of goods or services to refuse to supply to an individual or association on the grounds of state of health or handicap, or for an employer to refuse to hire or to dismiss an individual on these grounds. The Penal Code also covers discrimination based on origin, sex, customs, marital status, ethnicity, nationality, race or religion. Article 225-1 of the new Penal Code defines discrimination as: all distinctions made between physical persons on account of their origin, sex, family situation, state of health, handicap, customs, political opinions, trade union activities, their membership or non-membership, true or assumed, of an ethnic group, nation, race or religion.132

Although the Code contains this very broad definition of discrimi­ nation, which also extends protection to legal persons, it makes clear that not all forms of discrimination are punishable under the criminal law. Article 225-2 specifies that discriminatory behaviour, as defined in article 225-1, may result in a prison sentence of two years and a fine of 200,000 FF when it consists of: 1. refusing to provide a good or service; 2. hindering the normal exercise of any economic activity; 3. refusing to employ a person, or sanctioning or dismissing a person; 4. subjecting the provision of a good or service to a condition based on one of the grounds referred to in article 225.1; 5. subjecting an offer of employment to a condition based on one of the grounds referred to in article 225A.m

The Code clearly aims to cover all economic transactions, including those related to employment, and to exclude personal relationships from 131. See Law No. 90-602 of July 12, 1990 [Loi 90-602 du 12 juillet 1990 relative a la protection des personnes contre les discriminations en raison de leur etat de sant£ ou de leur handicap], JOURNAL O ffic ie l DE l a R £publique F ra n c a ise [J.O.], July 13, 1990, p. 8272; D 1990, 322. 132. See C ode p e n a l [C. p£n.] art. 225-1 (Fr.) (author’s translation) (emphasis added). 133. See C. p£n. art. 225-2 (author’s translation).

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its scope. However, the Code goes on to state that discrimination based upon state of health or handicap is permitted in certain cases, even where it involves the provision of a good or service or employment. Article 225-3 states that article 225-2 does not apply to: 1. Discrimination based on state of health, which consists of operations which aim to prevent or cover the risk of death, risks posed to the physical integrity of a person or risks of incapacity for work or invalidity; or 2. Discrimination based on state of health or handicap, which consists of a refusal to employ or register based on medically proven lack of aptitude either in the framework of Title IV of Book II of the Labour Code134 or in the framework of the legislation relating to the statutory provisions applying to the civil service.135 Presumably, the intention behind this latter provision was to ensure that employers are not liable for refusing to employ an individual who is unable to perform the job at issue. On the other hand, the Code makes no clear provision for determining when discrimination on the grounds of disability has actually occurred. More particularly, the Code fails to specify whether there is any obligation on employers to alter the working environment, where this would allow the individual to perform a particular job. In the absence of a clear statement to this effect, it seems unlikely that such a requirement can be read into the law; this means that it is not a criminal offence to refuse to hire, or to dismiss someone whose disability requires even a minor accommodation. In contrast, American anti-discrimination law adopts a much more pro­ active approach, and does require that some effort be made to accom­ modate a worker’s disabilities. Commentators have criticised the French approach to employment discrimination, and have argued that it fails to protect minorities adequately.136 Gitter lists four major weaknesses with the French system: 1. The categorisation of employment discrimination as a criminal rather than a civil offence vindicates complainants rather than awarding them monetary damages or reinstatement. The fines paid, which are in any case nominal, go to the State and not the victim; 2. The use of the criminal law takes the case out of the complainant’s control and requires that the complaint meet a higher standard of proof. 134. This title only deals with procedural aspects of the work of doctors in the workplace. 135. C. p£n. art. 225-3 (author’s translation). 136. See e.g., IAN FORBES AND GEOFFREY MEAD, MEASURE FOR MEASURE, A COMPARATIVE

A n aly sis o f M e a su res t o c o m b a t R a c ia l D iscrim ination in th e M em ber S ta te s o f th e E uropean C om m unity (Department o f Employment Research Series No. 1, 1992); Donna M. Gitter,

French Criminalization of Racial Employment Discrimination Compared to the Imposition of Civil Penalties in the United States, 15 COMP. LAB. L.J. 488 (1994).

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COMPARATIVE LABOR LAW JOURNAL [Vol. 18:62 The State, through public prosecutors, can decide when, and if, to prosecute;137 3. Although the plaintiff can bring a civil action for breach of contract, there is no specific anti-discrimination provision in the Civil Code which can be relied upon; and 4. The French law fails to proscribe indirect discrimination because the legislature did not wish to criminalise what is generally considered to be an unintentional wrong.138 These criticisms demonstrate the weaknesses in the overall French approach to legislating against employment discrimination. In addition to these general weaknesses, the French law fails to define the concept of “handicap” and the precise scope of the protected group. The Americans with Disabilities Act of 1990 and the Irish Employment Equality Bill both contain a detailed definition of disability, and state that individuals who have had a disability or who are perceived to have a disability, are protected. French criminal law makes no such attempt to explain the concept of handicap or examine the scope of the protected group. Furthermore, the French Penal Code does not deal adequately with the intricacies of disability discrimination by generally treating it in the same way as all other sorts of discrimination, and neglects the important issue of accommodation. This fact, and the legislative neglect of indirect discrimination, means that employers have a great deal of freedom when it comes to making unfavourable employment decisions concerning disabled people under the Penal Code. The balance between the interests of disabled people and the interests of employers, which other jurisdictions have sought to establish, does not seem to have concerned French legislators greatly in this case. Therefore, of all the disability anti-discrimination laws, in Europe or elsewhere, French law seems to provide the least protection to disabled people and the least effective remedies where discrimination is established. However, these comments should be put in the broader legal context in France. While this is the only law specifically addressing disability employment discrimination, in certain cases, disabled individuals also can rely on provisions of the civil law contained in the Labour Code. In cases of wrongful dismissal motivated by discrimina­ tion, plaintiffs can rely on the wrongful discharge statute.139 Although this does not specifically cover discriminatory dismissals on the basis of disability, it does provide for remedies, including damages and/or 137. However, the law does allow organisations working for disabled people to associate them­ selves in a court action with the public prosecutor in cases of discrimination. 138. Gitter, supra note 136, at 489. 139. C ode d u t r a v a i l [C. tr a v .] , art. L. 122-14 (Fr.).

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reinstatement, where the dismissal is not made for a “cause reelle et serieuse” (“a genuine and serious cause”).140 The Labour Code also places an obligation on employers to reassign workers who have been disabled as a result of a work related accident or illness to another job within the enterprise, where, as a result of the injury, the original position can no longer be maintained.141 There is no such statutory obligation with regard to other workers who become disabled. However, French courts increasingly have been willing to find that employers are obliged to offer such workers alternative employment, or to make other accommodations to meet the needs of disabled employ­ ees.142 D. The European Community The European Community has taken an interest in promoting the employment of disabled people since the 1970s. This involvement has taken the form of financial support from the European Social Fund, a series of action programmes concerned with disability,143 and a 1986 Recommendation on the Employment of Disabled People.144 Howev­ er, until recently, disability discrimination was not addressed at all at the Community level, and the Community even has been criticised for its discriminatory treatment of its employees.145 Instead, in the 1980s, both the Commission and the European Parliament tended to focus on the quota system as a means of promoting the employment of people with disabilities. The Commission recommended that all Member States adopt some form of quota,146 and commissioned a report on this subject,147 while the European Parliament pushed the Commission and the Member States to take further action in this area. The 1990s has seen a shift in focus, with first the European Parliament, and now the Commission, addressing the issue of disability discrimination. This 140. See also Alix R. Rubin, Comment, HIV Positive, Employment Negative? HIV Discrimination Among Health Care Workers in the United States and France, 17 COMP. Lab. L.J. 398, 429 (1996). 141. C. TRAV., art. L. 122-32-5 (Fr.). 142. See Kibalo Adorn, La modification du contrat de travail du fait de Vetat de sante du salarie, DROIT S o c ia l 461, 461-71 (1995); Jean P&issier, Inaptitude et modification d ’emploi, DROIT SOCIAL 608, 608-14 (1991). 143. The most recent action program is Helios II, (Third) Community Action Programme to Assist Disabled People (1993-1996) 1993 O.J. (L 56) 30. 144. Council Recommendation and Guideline on the Employment of Disabled People in the European Community of 24 July 1986, 1986 O.J. (L 225/43) 43. 145. See Aart Hendriks and Sjef Gevers, (Pre) employment Medical Examinations and the Law, with Particular Reference to the European Union, 1 EUR. J. HEALTH L. 229 (1994). 146. See Council Recommendation and Guideline on the Employment of Disabled People in the European Community, supra note 144. 147. See W il A lb ed a, D isab led PEOPLE AND THEIR EMPLOYMENT, (Commission of the European Communities, 1994).

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attention has intensified over the past twelve months, and as a result, disability discrimination is firmly on the agenda at the European level. The new focus on disability discrimination has occurred partly as a result of the Commission’s review of Community social policy in 1994. In 1993 the Commission published a Green Paper on social policy. In response, the Commission received numerous comments, many of which dealt with disability. The European Parliament, the Economic and Social Committee and many Non-Governmental Organisations (NGOs), including the European Trade Union Confedera­ tion and disability NGOs, called upon the Commission to initiate action to combat disability discrimination. The Commission supported this call in the White Paper which it subsequently published.148 The Commis­ sion felt, however, that there existed no suitable Treaty article on which it could base a proposal for a binding anti-discrimination instrument, and therefore stated in the White Paper that “at the next opportunity to revise the Treaties, serious consideration must be given to the introduc­ tion of a specific reference to combatting discrimination on the grounds o f . . . disability.”149 At subsequent meetings with the European Parliament the Commissioner for Employment and Social Affairs, Padraig Flynn, confirmed that the Commission not only believes that such an amend­ ment should be considered, but also expressly supports it.150 State­ ments calling for an amendment to the Treaty giving the Community the competence to address disability discrimination therefore have been included in reports of both the Commission and the European Parlia­ ment.151 These reports have been forwarded to representatives of the Member States who are negotiating the Intergovernmental Conference, which in turn has placed the matter on its agenda.152 However, a subsequent Commission report only makes reference to the inclusion of a general anti-discrimination clause, with no specific reference to disability.153 148. European Social Policy—A Way Forward for the Union. A white paper COM(94)33 final at (I)(2)(b)(i). 149. Id. at 52. 150. Information provided by Members of the European Parliament (MEPs) who attended the meeting in question. 151. See also the Parliament’s Resolution on (i) Parliament’s Opinion on the Convening of the Intergovernmental Conference and (ii) Evaluation of the Work of the Reflection Group and Definition of the Political Priorities of the European Parliament with a View to the Intergovernmental Conference, A4-0068/96, para. 4.5. 152. Reflection Group’s Report, Messina, 2 June 1995, Brussels, 5 Dec. 1995 (last modified Dec. 10, 1995) . 153. Commission Opinion for Reinforcing Political Union and Preparing for Enlargement, Inter­ governmental Conference 1996, para. 9.

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If the Treaty is amended it is highly probable that some form of binding Community instrument addressing disability discrimination will quickly follow. The rapid response of the Commission to the incorpora­ tion of article 118a in the Treaty by the Single European Act,154 concerning health and safety in the workplace, shows how eager the Commission is to make good use of new competencies in the social field. Having already expressed an interest in this area, it is likely that the Commission would respond equally quickly to this new develop­ ment. Although the Commission will not propose any binding antidiscrimination measure prior to a Treaty amendment, it has already produced one important non-binding measure. The Commission’s Communication on Equality of Opportunity for People with Disabili­ ties155 takes its inspiration from the United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities.156 The Communication aims to give “a renewed impetus towards the rightsbased equal opportunities approach to disability,”157 and as such marks a significant step forward in European Community disability policy. The Communication is accompanied by a draft Council resolution on Equality of Opportunity for People with Disabilities, which, in November 1996, has yet to be adopted. In addition, the European Parliament has sponsored research on the possible impact of a Commu­ nity disability anti-discrimination directive in preparation for any new competencies,158 while the Petitions Committee of the European Parliament has commissioned a report on the Rights of Disabled People in the European Union.159 IV. C onclusion Combatting disability discrimination is now firmly on the agenda in Europe. At present, most of the interest seems to come from the northern European countries; however, with the subject now having a 154. 155. 156. 157. 158.

Single European Act, 1987 O.J. (L 169) 9. (X>M(96)406 final. G.A. Res. 96, U.N. GAOR, 48th Sess., No. 8637 at 305 (1994). COM(96)406 at para. 7. A report on disability anti-discrimination legislation prepared by disability NGOs and

academics was presented to the European Parliament to mark the third European Day o f Disabled People. The need for anti-discrimination measures also featured prominently at the first and second European Days. See DISABLED PEOPLE’S INTERNATIONAL, REPORT OF THE FIRST EUROPEAN DISABLED Peoples’ P a rlia m e n t, 1993; and D isa b led P eoples’ in te rn a tio n a l, R e p o rt o f th e H um an R ights P le n a ry M eeting, 1994. 159. The commissioned report is called the Banotti Report, named after the Member o f Parliament who has been appointed “rapporteur” o f the report. See 34 Million Disabled Europeans the Target of Discrimination, EUR. SOC. POL’Y, Jan. 16, 1996, § 59.

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European Community dimension the attention of other Member States will also be drawn. The case studies referred to in these two sections reveal five very different legislative approaches to tackling disability (employment) discrimination. The French criminalisation of disability discrimination contains considerable weaknesses. The German constitutional amendment looks more promising, although if it is to be effective it needs to be backed up with detailed statutes expanding on the concept of accommodation. The British law and Irish proposal seem to have identified many of the problems involved, but, in their present forms, also contain many vague and undefined terms. The Canadian and American legislators have adopted a more comprehensive approach than that embodied in these European initiatives, and the Americans with Disabilities Act in particular seems to address the many dimensions of the problem much more adequately. It is still too early to judge whether European anti-discrimination measures will be any more effective than the long-standing quota systems in promoting the employment of disabled people. Evidence on the effectiveness of such laws is scarce, and even in the United States, what little material that is available is inconclusive. However, more than fifty years’ experience with the quota system has revealed that systems which are not effectively enforced have little or no effect in terms of generating employment, while those which are based on the levy-grant system are incapable of meeting the set targets in this period of high unemployment, at least where the levy is set at a low level. The political will does not exist to enforce quota systems, or to set a high levy, and it cannot be expected that the performance records of quotas will improve. That being the case, disabled people and policy makers must look for a more effective alternative solution, and hopefully, anti-discrimination legislation will be part of that solution. It is clear that the first tentative steps made in Europe contain many weaknesses. However, with European Community involvement, promoting exchanges of information and European-wide research, it is hoped that lessons can be learned from these early mistakes, and that a successful European approach, possibly involving a directive based on an amended Treaty, could make a positive contribution to eliminating disability (employment) discrimination. In the meantime it should be noted that all the initiatives described above, irrespective of their success in combatting disability discrimina­ tion, nevertheless are symbolically important. They all involve a recognition by the legislature that it is society, and the assumptions which pervade society, which are excluding and disadvantaging people with disabilities, rather than seeing the exclusion as being caused by the

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individual and his or her disability. This locates the problem in society’s refusal to accept and accommodate a disability, rather than in the disabled individual. All of these initiatives, therefore, involve an ideological advance, which unfortunately does not translate necessarily into any real improvement in the position of disabled people.

[9]

THE DISABILITY DISCRIMINATIONACT 1992 (CTH): A THREE-DIMENSIONAL APPROACH TO OPERATIONALISING HUMAN RIGHTS L ee A n n B a sser * a n d M elinda Jo nes * [Until relatively recently, people with disabilities have been excluded from society. In line with international developments, the Commonwealth government enacted the Disability Discrimination Act 1992 (Cth) to protect the rights of people with disabilities in Australia. With unusual insight into what is needed to create a more just society — a society which is able to include all its members — the DDA included a unique range of strategies for dealing with the problems of discrimination and inequality. This article argues that the protections contained in the DDA are consistent with the three-dimensional approach to operationalising human rights: an approach to human rights that involves empowering people with disabilities (or other minority groups), a proactive state, and a community that considers the issue of inequality within its power to resolve. While the position of people with disabilities in Australia remains grim, in its ideal operation the DDA could be a powerful tool for social change.]

Contents

I II III IV

Introduction..................................................................................................................255 Human Rights and Disability in Australia................................................................256 The DDA and the A D A ............................................................................................... 258 The Distinctiveness of the Australian Approach...................................................... 259 A Defining Disability........................................................................................260 B The Element of Intention..............................................................................263 V The Three-Dimensional Approach to Human Rights..............................................265 A The First Dimension......................................................................................267 1 Discrimination.................................................................................. 268 2 Reasonable Adjustments.................................................................. 269 3 The Defence of ‘Unjustifiable Hardship’ .......................................271 4 The ‘Inherent Requirements of the Job’.........................................273 5 Mounting a Complaint.................................................................... 273 B The Second Dimension................................................................................. 275 1 Disability Standards.........................................................................276 2 Guidelines.........................................................................................278 3 Public Inquiries................................................................................ 279 C The Third Dimension.................................................................................... 280 1 Action Plans..................................................................................... 281 2 Voluntary Industry Codes of Conduct............................................282 VI Conclusion...................................................................................................................283

* BA, LLB (Monash), LLM (London); Barrister and Solicitor of the Supreme Court of Victoria; Senior Lecturer, La Trobe Law, La Trobe University, t BA(UNSW), LLB (Melb); Senior Lecturer, Faculty of Law, University of New South Wales.

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I In t r o d u c t io n

No volume on human rights would be complete without an appraisal of the rights of people with disabilities. Yet people with disabilities are often left completely off the agenda. The current push to develop an International Conven­ tion on the Rights of People with Disabilities is the international strategy for ensuring the inclusion of people with disabilities in the human rights conversa­ tion.1 It is believed that such a move is necessary to ensure that people with disabilities are treated with dignity and respect, recognised as equal rightsbearers and ensured the ability to participate fully in all aspects of the societies in which they live. At present, in Australia as elsewhere, people with disabilities are the most vulnerable of ail groups. People with disabilities report human rights abuses on a daily basis and are regularly expected to overcome hurdles that do not block the paths of other Australians. In the past, people with disabilities were simply excluded from society — locked in institutions, segregated into special schools, and hidden within the private realm of the family. Out of sight, people with disabilities were also out of mind. Today the overt presence of people with disabilities in the community has forced recognition of some of the issues they confront. When people with disabilities are women, they have all the issues relating to gender as well as those relating to disability. For example, evidence of the rape and sexual abuse of young women suggests that anywhere between 70 and 90 per cent of women with intellectual disabilities are victims of such crimes by the time they reach 18.2 Similarly, where people with disabilities are also members of groups targeted on racial grounds, they must confront issues relating to race as well those relating to disability. For example, no group of children is as at risk of being deaf or blind as indigenous Australians. It is well known that 70 per cent of schoolaged indigenous children in the Northern Territory suffer hearing loss because they do not have access to readily available antibiotics, and blindness is 10 times as prevalent in the indigenous community.3 Further, the Australian Institute of Health and Welfare suggests that the rate of disability in the indigenous commu­ nity is twice that of the general population.4 The term ‘people with disabilities’ encompasses a very wide range of differing life experiences and physical and mental states. Included in the term ‘people with disabilities’ are those whose activity is limited by physical disabilities; those with visual or hearing disabilities; those with chronic illness, mental health, and 1 For further information, see the website of the Expert Group Meeting on the Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities at 7 July 2002. 2 New South Wales Department for Women, Reclaiming Our Rights (1996) 19. 3 See Human Rights and Equal Opportunity Commission, Statistics: Aboriginal and Torres Strait Islander Peoples at 15 July 2002. 4 See Australian Institute of Health and Welfare, Australia s Welfare 1997: Services and Assistance (1997) 304. It is difficult to obtain accurate statistics relating to the incidence of disability in the indigenous population. The National Centre for Aboriginal and Torres Strait Islander Statistics (a centre within the Australian Bureau of Statistics) is currently engaged in a research project to obtain data on disability among indigenous people. For further information see .

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communication disorders; those with intellectual disabilities, genetic disorders, and disfigurement; and those with problems associated with aging or with delay in achieving developmental milestones.5 People with disabilities can be young or old; rich or poor; high or low functioning; dependent or independent. In any test, people with disabilities (as with women, gay men and lesbians, and minority races) will exhibit the full range of outcomes, with success very dependent on factors such as the nature of the test and the reason for its administration. Further, unlike gender, race or sexuality, disability can be acquired at any point in a person’s life and could have greater or lesser impact on the individual depending on the environmental context in which they live.6 Commonly held attitudes towards disability make the assertion, as well as the achievement, of human rights for people with disabilities particularly problem­ atic. People with disabilities have been viewed as abnormal, monstrous and evil; as irrational and fundamentally lacking in commonsense or intelligence; as tragic figures possibly deserving of pity and worthy of charity; or as deviant, dependent and worthless. To make matters worse, people with disabilities stand accused of draining society of resources which should be spent on ‘lives worth living’.7 Media portrayals rarely show people with disabilities as independent, competent individuals — rather, it is common to see caricatured images of morally degener­ ate, mentally ill persons posing a serious threat to the wellbeing of society.8 The combined response of pity and fear has resulted in people with disabilities being excluded from almost all the benefits of an advanced Western capitalist society. People with disabilities are more likely than anyone else in the community to live in poverty, to be unemployed and to receive an inadequate education.9 Much needs to be done if the equality rights of people with disabilities are to be achieved. II H u m a n R ig h t s a n d D i s a b i l i t y in A u s t r a l ia Human rights principles are intended to ensure that being human is sufficient grounds for equality and freedom. The achievement of rights requires more than 5 Jerome Bickenbach, ‘Voluntary Disabilities and Everyday Illnesses’ in Marcia Rioux and Michael Bach (eds), Disability Is Not Measles'. New Research Paradigms in Disability (1994) 109; Tom Shakespeare, ‘What Is a Disabled Person?’ in Melinda Jones and Lee Ann Basser Marks (eds), Disability, Divers-ability and Legal Change (1999) (56 International Studies in Human Rights) 25. 6 Marcia Rioux, ‘Towards a Concept of Equality of Well-Being: Overcoming the Social and Legal Construction of Inequality’ (1994) 7 Canadian Journal of Law and Jurisprudence 127. 7 Rosemary Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (1997); Lennard J Davis, ‘The Rule of Normalcy: Politics and Disability in the USA [United States of Ability]’ in Melinda Jones and Lee Ann Basser Marks (eds), Disability, Divers-ability and Legal Change (1999) (56 International Studies in Human Rights) 35; Jenny Morris, Pride against Prejudice: A Personal Politics of Disability (1991). 8 Helen Deutsch and Felicity Nussbaum (eds), ‘DEFECTS’: Engendering the Modern Body (2000); David Mitchell and Sharon Snyder, Narrative Prosthesis: Disability and the Dependen­ cies of Discourse (2000). 9 Paul Abberley, ‘Work, Utopia and Impairment’ in Len Barton (ed), Disability and Society: Emerging Issues and Insights (1996) 61, 70; Michael Oliver, The Politics of Disablement (1990) 69-70.

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a declaration of entitlement. Given the level of human rights abuse to which people with disabilities are subject, the achievement of rights must rely on strong and enforceable law. Ideally, human rights law would be found at the pinnacle of both the political and legal systems: human rights law would limit the activities of the state as well as the day-to-day lives of all members of the community. Were human rights the fundamental governing principle of society, they would be embedded in the Constitution itself, or at the very least, in a bill of rights. The question of introducing formal protection of human rights has been on and off the Australian political agenda a number of times. However, at this point in time, there is no constitutional protection of rights and not even a declaratory bill of rights. The Australian government is authorised by the external affairs power10 to enter into treaties and international conventions.11 Australia has indicated a certain level of commitment to human rights by being a signatory to each of the major international human rights instruments.12 However, international law is not automatically incorporated into Australian law.13 For international law to have a real impact on the operations of Australian government or the community, it is necessary for it to be translated into domestic legislation. This has not occurred. As a result, the Australian approach to human rights can be found in a suite of anti-discrimination laws protecting the rights of minority racial groups through the Racial Discrimination Act 1975 (Cth) (‘RDA ’); the rights of women through the Sex Discrimination Act 1984 (Cth) ( ‘SDA ’); and the rights of people with disabilities through the Disability Discrimination Act 1992 (Cth) (‘DDA ’). At first sight, the DDA looks to be a simple anti-discrimination law operating in much the same way as the SDA and the RDA. However, as this article will 10 11 12

13

Constitution s 51 (xxix). Victoria v Commonwealth (1996) 187 CLR 416 (‘Industrial Relations Act Case’). See, eg, Universal Declaration of Human Rights, GARes 217A, UN GAOR, 3rd sess, [71], UN Doc A/810 (1948); International Covenant on Civil and Political Rights, opened for signature 16 December 1966, 999 UNTS 171 (entered into force 23 March 1976); International Covenant on Economic, Social and Cultural Rights, opened for signature 16 December 1966, 993 UNTS 3 (entered into force 3 January 1976); International Convention on the Elimination of All Forms of Racial Discrimination, opened for signature 7 March 1966, 660 UNTS 195 (entered into force 4 January 1969); Convention on the Elimination of All Forms of Discrimination against Women, opened for signature 18 December 1979, 1249 UNTS 13 (entered into force 3 Septem­ ber 1981); Convention on the Rights of the Child, opened for signature 20 November 1989, 1577 UNTS 3 (entered into force 2 September 1990); Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, opened for signature 10 December 1984, 1465 UNTS 85 (entered into force 26 June 1987). Australia has recognised the precarious position of people with disabilities by supporting the creation of informal human rights instru­ ments including: Declaration on the Rights of Disabled Persons, GARes 3447, UN GAOR, 30th sess, Supp No 34, [88], UN Doc A/10034 (1975); Declaration on the Rights of Mentally RetardedPersons, GARes 2856, UN GAOR, 26thsess, Supp No 29, [93], UN Doc A/8429 (1971); Standard Rules on the Equalisation of Opportunities for Persons with Disabilities, GA Res 48/96, UN GAOR, 48th sess, Supp No 49, [202], UN Doc A/48/49 (1993). These and other instruments relevant to people with disabilities are reproduced in Theresia Degener and Yolan Koster-Dreese (eds), Human Rights and Disabled Persons: Essays and Relevant Human Rights Instruments (1995) 159ff. For a brief discussion of the role of international law, see Melinda Jones and Lee Ann Basser Marks, ‘Law and People with Disabilities’ in Neil Smesler and Paul Baltes (eds), International Encyclopedia of the Social and Behavioral Sciences (2001) vol 12, 8475, 8478-9. See, eg, Dietrich v The Queen (1992) 177 CLR 292; Minister for Immigration and Ethnic Affairs v Teoh (1995) 183 CLR 273; Industrial Relations Act Case (1996) 187 CLR 416.

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demonstrate, the DDA is in fact a human rights instrument with a sophisticated mechanism for operationalising the human rights of people with disabilities. The ideal process for achieving equality for vulnerable groups involves a commitment to change on the part of the individuals concerned, the state and the community as a whole. These are the three dimensions of human rights praxis, where the potential hegemonic force of equality becomes the commonsense approach to including rather than excluding the target group. This three-dimensional ap­ proach opens the way for the achievement of the full potential of human rights principles. The three-dimensional approach to human rights encompassed in the DDA offers a framework for protecting the rights of other groups experiencing human rights abuses. This is because the three-dimensional approach offers a strategy to ensure that human rights abuses are not marginal experiences or the responsibility of minority groups. However, the three-dimensional approach to human rights protection is not the only important and distinctive aspect of the DDA. At an international level, the Americans with Disabilities Act of 1990 (‘ADA ’)14 has been adopted uncritically by jurisdictions seeking to protect the human rights of people with disabilities within their communities as if it is the only available model. Yet, were more known about it, the DDA would provide an alternative path for protecting the rights of people with disabilities, a path which we believe would provide greater empowerment of people with disabilities. For this reason, the first aspects of the DDA we consider are those which distinguish it from the

ADA.

Ill T h e DDA a n d t h e ADA The difference between the Australian approach to disability rights and the approach of the ADA is fundamental and indicative of the very different attitudes to, and experiences of, equality. Even the aims of the DDA diverge markedly from those of the ADA, having a much broader mandate from the Australian Parliament than the ADA received from the United States Congress. Francis and Silvers note the somewhat conflicting aims of the ADA included ‘eliminating arbitrary prohibitions against being in the world, ending inequality of opportu­ nity, and reducing the costs to the United States of unnecessary dependency’.15 On the other hand, the DDA was motivated by a vision of a fairer Australia where people with disabilities are regarded as equals, with the same rights as all other citizens, with recourse to systems that redress any in­ fringement of their rights ... where difference is accepted, and where public in­ strumentalities, communities and individuals act to ensure that society accom14 15

Pub LNo 101-336, 104 Stat 327 (1990); 42 USC §§ 12 101-213 (1995). Leslie Francis and Anita Silvers, ‘Introduction — Achieving the Right to Live in the World: Americans with Disabilities and the Civil Rights Tradition’ in Leslie Francis and Anita Silvers (eds), Americans with Disabilities: Exploring the Implications of the Law for Individuals and Institutions (2000) xii, xx.

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modates such difference.16 Although the DDA is not categorised as a civil rights instrument, the commit­ ment to the human rights of people with disabilities is clear. The explicit object of the DDA is: (b) to ensure, as far as practicable, that persons with disabilities have the same rights to equality before the law as the rest of the community; and (c) to promote recognition and acceptance within the community of the princi­ ple that persons with disabilities have the same fundamental rights as the rest of the community.17 The dramatic difference between the objectives of the two pieces of legislation is a reflection of the differing cultural, political and social environments of the two countries. The American commitment is to the ideals of individual liberty, equality and freedom; the Australian commitment is to the ideals of social justice and equal rights.18 IV T h e D i s t i n c t i v e n e s s o f t h e A u s t r a l i a n A p p r o a c h The distinctiveness of the Australian approach comes from a combination of an historic commitment to social welfare and a cultural expression of the concept of the ‘fair go’. Australian political ideology has always been wary of rugged individualism and there has been a willingness to use law to facilitate social change. Australian political ideology can be seen as significant when one considers the two radical elements of the Australian legislation. The first of these elements is the way in which the Act embraces anyone who could, in any way, be considered a person with a disability. The second aspect of the legislation that reflects Australian values is the fact that the motivation for acting in a discrimi­ natory manner is irrelevant. The DDA makes unintentional discriminatory action just as culpable as intentional discrimination. Both the scope of definition and the question of intention are a reflection of the idea that the law is not about punish­ ing ‘evil’ nor protecting ‘good’. Questions of fault and blame have no place in legislative schemes designed to create a fairer society. Rather, the law seeks to protect those in need of protection and to prevent the impact of discrimination wherever possible. The law is not concerned with the motivation for discrimina­ tory action nor is it concerned that the discrimination was well-intentioned. If a person discriminates against another on the ground of disability, they will not be protected simply because they believed they were acting in the best interests of the person with a disability.19 16 17 18

19

Commonwealth, Parliamentary Debates, House of Representatives, 26 May 1992, 2755 (Brian Howe, Minister for Health, Housing and Community Services). DDA 1992 (Cth) s 3. For a more detailed comparison of the ADA with the DDA, see Melinda Jones and Lee Ann Basser Marks, ‘A Bright New Era of Equality, Independence and Freedom: Casting an Austra­ lian Gaze on the ADA' in Leslie Francis and Anita Silvers (eds), Americans with Disabilities: Exploring the Implications of the Law for Individuals and Institutions (2000) 371. The authors have written two other articles which discuss aspects of the DDA: Melinda Jones and Lee Ann Basser Marks, ‘Disability, Rights and Law in Australia’ in Melinda Jones and Lee

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A Defining Disability The Australian definition of disability is extremely broad and includes as disabled many people who would fall outside the scope of most other disability discrimination laws. The Australian definition of disability allows for the reality of the experience of disability, where what is meant by ‘disability’, or being a ‘person with a disability’, is a contingent category — an aspect of existence rather than a monolithic state. This approach does not depend on a person proving their abnormality and is suggestive of a more respectful way of valuing people with disabilities than is achieved by any other legislative model. For the purposes of the DDA , a disability includes: • the total or partial loss of the person’s bodily or mental functions; • the total or partial loss of a part of the body; • the presence in the body of organisms causing disease or illness; • the presence in the body of organisms capable of causing disease or illness; • the malfunction, malformation or disfigurement of a part of the person’s body; • disorder or malfunction that results in the person learning differently from a person without the disorder or malfunction; and • a disorder, illness or disease that affects a person’s thought processes, perception of reality, emotions or judgment or that results in disturbed be­ haviour.20 To establish that one has a disability, it is not necessary to show that one’s situation fits into any of the categories listed in the definition section. This is because where a legislative definition contains the word ‘includes’, the terms or factors listed are intended to be indicative of the type of factors consistent with the definition, rather than limiting the class. As such, the DDA will allow for any situation comparable to those factors listed. The inclusive definition recognises that what constitutes disability could vary over time and place. For example a condition existing today may not be disabling in the future and, equally, disabling conditions not even imagined at present could be sufficiently similar to the general ideas about disability to be covered by the DDA. The protection of the DDA extends to people who do not in fact have disabili­ ties, but are discriminated against because the discriminator believes that person to be disabled. The Act also protects those who are discriminated against because they may have a disability in the future or they have had a disability in the past. It protects people whose disability is intermittent and people who are discriminated against because of their relationship or association with a person with a disabil­ ity.21 In none of these situations is it necessary to show that the person in question Ann Basser Marks (eds), Disability, Divers-ability and Legal Change (1999) (56 International Studies in Human Rights) 189; Melinda Jones and Lee Ann Basser Marks, ‘The Limitations on the Use of Law to Promote Rights: An Assessment of the Disability Discrimination Act 1992 ’ in Marge Hauritz, Charles Sampford and Sophie Blencowe (eds), Justice for People with Disabili­ ties (1998) 69. 20 DDA 1992 (Cth) s 4. 21 Section 4(1).

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deserves equal treatment, as this is assumed to be the case. Further, the Australian law is not concerned about whether the person subjected to discrimination is disabled as a result of his or her own action, or whether they have in some way contributed to their disability. As such, the DDA does not protect ‘worthy’ people with disabilities and deny protection to people with disabilities who are, at least in part, to blame for being disabled.22 What is at issue is whether or not the person has a disability, and, given the breadth of the definition of disability, this is unlikely to be difficult to prove. The definition of disability in the DDA was specifically drafted in response to the experience of State anti-discrimination law, where problems had arisen because of the interpretation of strict definitional criteria, which focused on impairment and medical categorisations. The case of Kitt v Tourism Commis­ sion23 illustrates this point. Kitt had been employed as a temporary cave guide in the Jenolan Caves in the Blue Mountains. A medical examination was a precon­ dition of permanent employment. When it was discovered that Kitt had epilepsy, he was told he could not work in the caves and was given a job selling tickets. A question of legal interpretation arose as to whether Kitt could challenge the decision on the grounds of disability. Instead of considering whether Kitt had been discriminated against, the focus of the case was on whether epilepsy constituted a physical impairment under the New South Wales legislation,.24 It was found that certain neurological disabilities (including epilepsy) and mental disorders were not covered by the legislation. The DDA was specifically de­ signed to avoid such arbitrary outcomes. There are a number of advantages to having a broad definition of disability. The first of these is that it is unnecessary to engage in complicated discussions about the relationship between impairment and disability. Much intellectual energy has been spent on this distinction. The World Health Organisation’s classification of impairment, disability and handicap defines ‘impairment’ as the medical problem a person has, a limitation of some sort or other, while ‘disabil­ ity’ is the external limitations to which the person is subjected.25 Whatever the attempts to draw these distinctions, they collapse in everyday usage where they become conflated. Avoiding this issue is therefore very important in legal actions seeking to protect the human rights of people with disabilities. The broad, general notion of disability in the DDA means that there is no need to focus on the person bringing the action, and this allows decision-makers to concentrate on the real issue — the actions of the alleged discriminator. Minimising the need to involve medical or other professionals in claims of discrimination is also of great significance to people with disabilities. One of the Jerome Bickenbach demonstrates that these are significant limitations in both Canadian and US law: see Bickenbach, above n 5, 115. 23 [1987] EOC ^92-196. 24 Anti-Discrimination Act 1977 (NSW). 25 See World Health Organization, International Classification of Functioning, Disability and Health (2001); Ros Madden and Nicola Fortune, ‘The Development and Use of the WHO Clas­ sification of Disability’ (Unpublished paper presented at the Conference on Constructing Law and Disability, Canberra, 4-5 December 2000). 22

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greatest hurdles confronting people with disabilities has been the medicalisation of their lives. This has led to people being confused with, and reduced to, their biological or physiological condition. For example, it is often assumed that knowing that a person has Down Syndrome will tell you all you need to know about that person — forgetting that all individuals have unique personalities, values and experiences and that having a genetic disorder does not deprive a person of personhood. For people with disabilities, the removal of medical and other experts comes as a great relief. Until relatively recently, the medical model of disability supported assumptions such as the one described above and reduced the person to the impairment. Before people with disabilities could make use of a piece of legislation such as the DDA, it was essential for them to shed the perception that the site of their problems was their body.26 Internationally, disability communities have become empowered through the acceptance of the social model of disability.27 This model locates the barriers to inclusion: in the social fabric and structures of society. The key to equality for people with disabilities, on the social model, is the recognition of socially constructed barriers and their removal. That the Australian definition of disability incorporates the social model of disability makes it worthy of emulation. Having such a broad definition of disability is very important from a legal perspective, as it ensures that legal actions do not founder at the threshold because of a technical decision about who is ‘disabled’.28 We have argued elsewhere that to focus on the question of who should be entitled to be considered disabled cre­ ates unnecessary confusion and limits the effectiveness of the legislation. It also creates an anomaly that very often individuals who have been treated less fa­ vourably than ‘normal’ members of the community because of an impairment are often unable to challenge their treatment or to be compensated for it29 The Australian legislation avoids this trap, while at the same time using other mechanisms to balance the rights and interests of people with disabilities with the interests of the rest of the community. Moreover, in adopting a simple and broad definition of disability, the Australian legisla­ tion offers the potential of inculcating change at a fundamental level. By in­ cluding minor or trivial disabilities within its scope, the legislation provides for a flexibility in treatment of all members of the community, which ultimately must be to the advantage of those whose difference is more acute. For people with disabilities to be accepted into society, there needs to be a great degree of flexibility and respect for individual difference. Responding to complaints of a minor nature can pave the way for the attitudinal change that is a prerequisite to Susan Wendell, The Rejected Body: Feminist Philosophical Reflections on Disability (1996); Lennard Davis, Enforcing Normalcy: Disability, Deafness & the Body (1995). 27 For a discussion of the various models of disability, see Jones and Basser Marks, ‘Law and People with Disabilities’, above n 12, 8475-6. Mike Oliver, Len Barton and Vic Finkelstein are the founders of the social model, and any of their writings will provide an insight into the social model. Equally, see the works cited above nn 5-9. 28 The US experience well illustrates the dangers of a more targeted definition. 29 Jones and Basser Marks, ‘A Bright New Era of Equality, Independence and Freedom’, above n 19, 375.

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social change. For example, where a university modifies the exam procedure to accommodate the needs of a student with a broken arm, it will be more open to providing exam modification for a person who has a permanent condition which affects the use of the arm. Further, the existence of flexibility granted to ‘normal’ students normalizes the situation and makes it easier for a person with a disability to ask for support. Once accommodations are common and uncontroversial and not provided only for outsider groups, inclusion becomes a way of life and provides a backdrop for systemic change.30 In summary, a broad definition of disability is a unique and powerful feature of the Australian legislation. The definition makes it unnecessary to distinguish between impairment and disability. This is empowering for people with disabili­ ties, as they do not have to prove that they are ‘abnormal’ or focus on their ‘deficits’ when they assert their equality rights. There is no need to focus on the particular wording of the DDA or to establish that the disability in question falls within a particular category of disability. This is consistent with the general principle of statutory interpretation that beneficial laws should be read broadly, and punitive laws read narrowly. Further, the coverage of the DDA is such that it allows for the protection of many people who would not generally be considered people with disabilities — ordinary Australians (like all people with disabilities) who are looking for fair treatment in the light of a relatively minor disability. In Australia there has been no need to promote the interests of particular groups of people with disabilities who can show historic disadvantage or who have operated as powerful lobby groups. Rather, a fairer society is recognised as one where people do not discriminate against each other on spurious grounds and where an effort is made to ensure that all people are included in all aspects of the social good. In this situation, factors such as disability are only relevant to the extent that there is knowledge of what needs to be done to accommodate inclu­ sion. B The Element of Intention Another distinctive feature of the DDA is that there is no need to prove that an alleged discriminator intended to discriminate against a person on the grounds of disability.31 This again relates to the Australian position that the achievement of social justice does not depend on the attribution or finding of blame or fault on, in this case, the part of the alleged discriminator. In Waters v Public Transport Corporation,32 a case decided under the Equal Opportunity Act 1986 (Vic), the High Court held that motive and intention to discriminate are irrelevant to the fact of discrimination.33 In Garity v Commonwealth Bank of Australia,34 a case 30 Ibid 376. 31 In situations where discrimination is only one of a number of reasons for the taking of an action, the action may nonetheless constitute unlawful discrimination. Discrimination need not be the dominant or substantial reason for the action: DDA 1992 (Cth) s 10. 32 (1991) 173 CLR 349. 33 Ibid 359-60 (Mason CJ and Gaudron J), 382 (Deane J). 34 [1999] EOC1J92-966.

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decided under the DDA , Commissioner Nettlefold stated: The effect of an impugned practice, not the underlying intent, is the governing factor in determining whether the practice gave rise to discrimination. Intent to discriminate is not a necessary element of discrimination ... The task is to de­ termine whether the ‘true5basis of the employer’s conduct is or was grounded on the prescribed consideration ... The test to be applied is objective, in the sense that it is necessary to show no more than that, because of the aggrieved person’s disability, she received the less favourable treatment.35 Hills Grammar School v Human Rights and Equal Opportunity Commission36 provides a further illustration. Hills Grammar School refused to enrol Scarlett Finney on the ground that the accommodations that were necessary to support her enrolment would constitute an unjustifiable hardship on the school. In making this assessment, the school’s administration made inquiries about the needs of children with spina bifida generally, but did not look at the specific needs of Scarlett Finney herself. Hills Grammar School did not necessarily intend to discriminate against Scarlett but, in failing to look at the specific needs of the particular child, the school was found liable for unlawful discrimination. While less favourable treatment must be actuated by ‘disability’ under s 5 of the DDA 1992 (Cth), the causal link is determined by the court’s assessment of the circumstances of the case, not by the subjective rationale of the discriminator. The effect of removing the requirement of intention to discriminate is that many well-intentioned acts will nonetheless be considered discriminatory. Decisions made in what is believed to be the best interest of the person will not stand if the effect of the decision is found to be discriminatory. This is an important aspect of the Australian law. The rights of people with disabilities would be undermined were patronising or paternalistic actions authorised by the DDA. On the other hand, finding actors liable for discriminating is not to classify them as ‘bad’ or ‘evil’ people, nor as people who are exploitative of others. The law is not concerned to pass moral judgement. Rather, it is concerned to rectify improper actions. The Australian approach goes even further. Not only is the intention of dis­ criminators irrelevant, they need not even be aware of the effect of their behav­ iour on people with disabilities. The fact that indirect discrimination is as unlawful as direct discrimination37 shifts the focus from the behaviour of the alleged discriminator to the impact of their action. If the action concerned imposes a condition or requirement that is harder for a person with disabilities to meet than it is for people without disabilities, then it may constitute unlawful discrimination. In Australia, it is recognised that social change can only come about if mem­ bers of the community change the way they think and act. This will necessarily limit the freedom of those who would discriminate if not constrained. However, Australians do not value individualism to the extent that the legislators must 35 36 37

Ibid 79 129. See also Commonwealth v Humphries [1998] EOC ^[92-951. [2000] EOC H93-081 (‘Hills Grammar Case’). See below n 49 and accompanying text.

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prioritise the liberty of the general public over the equality of minority groups. If achieving the goal of equality for people with disabilities affects the liberty of would-be discriminators, then justice demands that there should be no freedom to discriminate. As the object of the legislation is the achievement of a fairer Australia, it is logical that well-meaning acts of discrimination must be prohibited alongside discrimination that is ill-intentioned, disinterested or accidental. V T h e T h r e e -D i m e n s i o n a l A p p r o a c h

to

H u m a n R ig h t s

The elements of the DDA discussed so far are predominantly of concern to individuals seeking redress for human rights abuses. Allowing an individual the opportunity to bring an action and to vindicate their experience of discrimination is important psychologically, and is an essential feature of human rights legisla­ tion in an adversarial legal environment. However, individual complaints, even where ideally handled and resulting in optimal outcomes, can do little to achieve the systemic change required by a society that seeks to fully accord human rights to its members. Although it is well known that individual complaints mechanisms are extremely limited, they are nonetheless the most common strategy in Western human rights legislation. Throughout the 20th century, the central struggle of people in minority and vulnerable groups involved gaining recognition of their rights as equals. The challenge for the 21st century is to develop mechanisms to operationalise human rights such that equality is a meaningful experience. The DDA is unique among anti-discrimination laws in including a strategy for actualising human rights. The strategy adopted by the DDA involves a three-dimensional approach to owning the problems of protecting the rights of people with disabilities. This approach involves the common effort of individuals with disabilities, the state and its instrumentalities, and the community as a whole. The object of the threedimensional approach is to spread the responsibility for the achievement of rights for people with disabilities across society, such that all members of society are included in the outcome of equality. In order for human rights to have a role to play in the lives of people with disabilities, two things are necessary. First, people with disabilities have to escape from the iron cage of the deficit model, where fault was located in the disabled individual. In this situation, it was assumed that, in order to be included in society, people with disabilities needed to change to become like other members of the society, rather than have society change to accommodate difference. The second requirement is the shift from a protectionist/welfarist approach to people with disabilities to the more general recognition of people with disabilities as rights-bearers. When these conditions pertain, people with disabilities are able to recognise and respond to the social barriers to their inclusion. In the first of the three dimensions, the state establishes a process that allows people with disabilities to respond to unjust treatment. In the DDA, this is the traditional individual complaints process that is the core of all anti-discrimination laws. The individual complaints mechanism of the DDA empowers individuals

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with disabilities to respond to discrimination in an attempt not only to be compensated but also to change the way that discriminators act. In the first dimension, the ownership of the problem of disability discrimination belongs to empowered individuals with disabilities who take primary responsibility for the achievement of equality. The second dimension of the process of operationalising human rights is also contained within the DDA. In this dimension the state plays an ongoing role in responding to inequalities, and operates proactively to deal with systemic discrimination which cannot be addressed simply through anti-discrimination processes. This second dimension involves a partnership between the state and people with disabilities in which the state shares the ownership of the problem with people with disabilities. Under the DDA the Human Rights and Equal Opportunity Commission (‘HREOC’), as a state instrumentality, is empowered to look beyond individual examples of discrimination, to take a broad view of specified areas of life and to respond to institutional inequality. The DDA provides for the making of ‘standards’ and ‘guidelines’ and for HREOC to undertake public inquiries into problem areas of discrimination. At the second dimension the assumption is that the state will collaborate with people with disabilities and take the inequality of people with disabilities seriously. In this process, it is expected that the interests and needs of other stakeholders will be taken into account and pragmatic solutions found for the protection of rights in the real world. The third dimension involves the community at large taking responsibility for, and owning, the process of ensuring the full inclusion of people with disabilities into all aspects of the social, economic and political life of the community. Communal ownership goes well beyond compliance with law or acceptance of public policy. In this dimension, all members of the community are empowered to make the equality of people with disabilities real in the context of specific aspects of communal life. It is notoriously difficult to legislate for attitudinal change and communal ownership goes beyond this. Yet without legislative provision it is hard to imagine how the process of change could begin to come about. The DDA provides a mechanism for this, in the form of ‘Action Plans’. HREOC provides the blueprint for what an Action Plan could contain, bearing in mind that Action Plans for small businesses, social clubs and multinational corporations will differ. In the process of developing an Action Plan, organisations are encouraged to refine the blueprint by consulting and collaborating with people with disabilities, both within the organisation and with those people with disabilities who could potentially come into contact with it. In this way, the third dimension builds on the partnership of the state and people with disabilities by providing a role for the community at large. The most surprising aspect of disability rights in Australia is the way in which the three dimensions have opened the way for the community to take on board the rights of people with disabilities over and beyond the require­ ments of the Act. From a holistic human rights perspective, the DDA leaves out many important aspects of human rights protection. Typical of anti-discrimination statutes

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developed in a Western capitalist society, the social, economic and cultural rights of people with disabilities are ignored. People with disabilities, perhaps more than other groups in society, often depend on social welfare to meet the costs of the basic rights to shelter, clothing and food. When the disability pension is not available,38 or when the amount of money provided is insufficient to allow people with disabilities to participate in society, then people with disabilities will be forced to exclude themselves from the community. Similarly, where the cost of medical treatment and/or required medication is more than the sum on which people are expected to live, other rights are otiose. The issue of compliance with the law also needs to be considered. As most discriminatory conduct is left unchecked — and it is unlikely that the law will cover all aspects of life — the law will need to be inculcated through disability awareness training and human rights education. A The First Dimension Operationalising human rights requires that members of minority groups con­ ceive of themselves as rights-bearers, and that there are mechanisms through which human rights abuses can be challenged and prohibited. In Australia, as in other jurisdictions, the actions of disability activists and their supporters ulti­ mately led the state to provide a means of rights recognition and a mechanism through which unequal treatment could become known and, if possible, rectified. The individual complaints process is one in which people with disabilities, whether individually, collectively or through an agent, are able to take responsi­ bility for challenging the conduct of discriminators. Grievance procedures such as those available under the DDA are the most common strategy for addressing human rights abuses through anti-discrimination laws. Under the DDA , the complaints process involves asking a series of questions. As discussed above, the answer to the first question (is the applicant a person with disabilities or otherwise entitled to bring an action under the DDA?) will almost invariably be yes. This allows the applicant, and the decision-making body, to focus on the real question: has there been discrimination against a person, or against people, with disabilities? This is the crux of the issue, and involves both questions of fact and law. The issues of fact need to be targeted to the individuals involved in the proceedings, and not to people of the class of ‘disabled’ to whom the complainant could be said to belong (eg Down Syn­ drome). The questions of law relate to the range of forms the discrimination may take — direct discrimination, indirect discrimination or harassment. Once it is agreed that there has been discrimination, the onus shifts from the complainant to the respondent, who may seek to prove that the discrimination in question was lawful under the Act. If the discrimination is found to be unlawful, the final questions relate to the remedy and its enforcement. The circumstances in which 38

The criteria for eligibility for the Disabled Pension are available at Centrelink, How Do I Qualify for a Disability Support Pension? (2001)