Disability and Equality Law 1409448789, 9781409448785

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Disability and Equality Law

The Library of Essays on Equality and Anti-Discrimination Law Series Editor: Suzanne B. Goldberg Titles in the Series: Disability and Equality Law Elizabeth F Emens and Michael Ashley Stein Sexuality and Equality Law Suzanne B. Goldberg Gender and Equality Law Julie Goldscheid Race and Equality Law Angela P Harris Age and Equality Law Michael Selmi Religion and Equality Law Nelson Tebbe

Disability and Equality Law

Edited by

Elizabeth F. Emens Columbia University Law School, USA

Michael Ashley Stein William and Mary Law School and Harvard Law School, USA

First published 2013 by Ashgate Publishing Published 2016 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN 711 Third Avenue, New York, NY 10017, USA Routledge is an imprint of the Taylor & Francis Group, an informa business

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. Notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe.

Contents Acknowledgements Series Preface Introduction PART I

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3 4 5 6

VII XI

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DEFINITION AND MODELS

Mike Oliver (1996), 'Defining Impairment and Disability: Issues at Stake', in Colin Barnes and GeofMercer (eds), Exploring the Divide, Leeds: Disability Press, pp. 39-54. 3 David Wasserman (2001), 'Philosophical Issues in the Definition and Social Response to Disability', in Gary L. Albrecht, Katherine D. Seelman and Michael Bury (eds), Handbook ofDisability Studies, Thousand Oaks, CA: Sage, pp. 219-51. 19 Simi Linton (2007), 'What I Learned', in My Body Politic, Ann Arbor: University of Michigan Press, pp. 108-20. 53 Tom Shakespeare (2006), 'Critiquing the Social Model', in Disability Rights and Wrongs, Abingdon: Routledge, pp. 29-53. 67 Eli Clare (2009), 'The Mountain', in Exile and Pride, Cambridge, MA: South End Press, pp. 1-13. 95 Mark Kelman (2000), 'Does Disability Status Matter?', in Leslie P. Francis, S.J. Quinney and Anita Silvers (eds), Americans with Disabilities: Exploring Implications of the Lawfor Individuals and Institutions, London: Routledge, pp. 91-101. 109

PART II

THEORIES OF EQUALITY AND INCLUSION

7 Sandra Fredman (2005), 'Disability Equality: A Challenge to the Existing AntiDiscrimination Paradigm?', in Anna Lawson and Caroline Gooding (eds), Disability Rights in Europe: From Theory to Practice, Oxford: Hart, pp. 199-218. 8 Adrienne Asch (2001), 'Critical Race Theory, Feminism, and Disability: Reflections on Social Justice and Personal Identity', Ohio State Law Journal, 62, pp. 391-423. 9 Ruth Colker (2009), 'Anti-Subordination Above All: A Disability Perspective', in When is Separate Unequal? A Disability Perspective, Cambridge: Cambridge University Press, pp. 10-3 8. 10 Anita Silvers (2001), 'Agency and Disability', in Lawrence C. Becker and Charlotte B. Becker (eds), Encyclopedia ofEthics, 2nd edn, London: Routledge, pp. 36-40.

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11 Susan Stefan (200 1), 'The Landscape of Discrimination Today', in Unequal Rights: Discrimination against People with Mental Disabilities and the Americans with Disabilities Act, Washington, DC: American Psychological Association, pp. 3-36. 213 12 Michael L. Perlin (2011), 'Mental Disability Law in a Comparative Law Context', in International Human Rights and Mental Disability Law: When the Silenced are Heard, Oxford: Oxford University Press, pp. 43-57. 247 13 Kristen Harmon (20 I 0), 'Deaf Matters: Compulsory Hearing and Ability Trouble', in Susan Burch and Alison Kafer (eds), Deaf and Disability Studies: Interdisciplinary Perspectives, Washington, DC: Gallaudet University Press, pp. 31-47. 273 PART III ACCOMMODATION AND ACCESS

14 Lisa Waddington (2008), 'When it is Reasonable for Europeans to be Confused: Understanding when a Disability Accommodation is "Reasonable" from a Comparative Perspective', Comparative Labor Law and Policy Journal, 29, pp.317-40. 15 Anna Lawson (2010), 'Challenging Disabling Barriers to Information and Communication Technology in the Information Society: A United Kingdom Perspective', in Lisa Waddington and Gerard Quinn (eds), European Yearbook ofDisability Law, Cambridge: Intersentia, pp. 131-48. 16 Christine J olls (200 1), 'Antidiscrimination and Accommodation', Harvard Law Review, 115, pp. 643-99. 17 MarkS. Stein (2006), 'Utilitarianism and Distribution to the Disabled', in Distributive Justice and Disability: Utilitarianism against Egalitarianism, New Haven, CT: Yale University Press, pp. 33-54. 18 Tobin Siebers (2008), 'Disability Studies and the Future ofldentity Politics', in Disability Theory, Ann Arbor: University of Michigan Press, pp. 70-95.

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PART IV LIFE AND DEATH

19 Samuel R. Bagenstos (2009), 'Disability, Life, Death, and Choice', in Law and the Contradictions of the Disability Rights Movement, New Haven, CT: Yale University Press, pp. 95-115. 20 Deborah Kent (2000), 'Somewhere a Mockingbird', in Erik Parens and Adrienne Asch (eds), Prenatal Testing and Disability Rights, Washington, DC: Georgetown University Press, pp. 57-63. 21 Allison C. Carey (2009), 'Reimagining Retardation, Transforming Community', in On the Margins of Citizenship: Intellectual Disability and Civil Rights in Twentieth-Century America, Philadelphia: Temple University Press, pp. 183-212. 22 Tom Shakespeare (1996), 'Introduction', in Tom Shakespeare, Kath Gillespie-Sells and Dominic Davies (eds), The Sexual Politics ofDisability: Untold Desires, London: Cassell Academic, pp. 1-15. 23 Michael Berube (2006), 'Was I Ever Wrong', in Rhetorical Occasions: Essays on Humans and the Humanities, Chapel Hill: University ofNorth Carolina Press, pp. 328-31. Name Index

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Acknowledgements The editors would like to thank all of the contributors for allowing us to use their thoughtful and important work to compose this volume. We also want to thank Suzanne Goldberg for the invitation and for inspiration, as well as helpful comments, and Timothy Gray, Alexa Roggenkamp and Bahrad Sokhansanj for terrific research assistance. Ashgate would like to thank our researchers and the contributing authors who provided copies, along with the following for their permission to reprint copyright material. American Psychological Association for the essay: Susan Stefan (2001), 'The Landscape of Discrimination Today', in Unequal Rights: Discrimination against People with Mental Disabilities and the Americans with Disabilities Act, Washington, DC: American Psychological Association, pp. 3-36. Copyright© 2001 American Psychological Association. Colin Barnes for the essay: Mike Oliver (1996), 'Defining Impairment and Disability: Issues at Stake', in Colin Barnes and GeofMercer (eds), Exploring the Divide, Leeds: Disability Press, pp. 39-54. This article is also available at http://www.leeds.ac.uk/disability-studies/. Bloomsbury Publishing Pic for the essay: Tom Shakespeare (1996), 'Introduction', in Tom Shakespeare, Kath Gillespie-Sells and Dominic Davies (eds), The Sexual Politics of Disability: Untold Desires, London: Cassell Academic, pp. 1-15. Copyright © 1996 Tom Shakespeare and Continuum, an imprint of Bloomsbury Publishing Pic. Cambridge University Press for the essay: Ruth Colker (2009), 'Anti-Subordination Above All: A Disability Perspective', in When is Separate Unequal? A Disability Perspective, Cambridge: Cambridge University Press, pp. 10-38. Copyright© 2009 Ruth Colker. Comparative Labor Law and Policy Journal and Lisa B. Waddington for the essay: Lisa Waddington (2008), 'When it is Reasonable for Europeans to be Confused: Understanding when a Disability Accommodation is "Reasonable" from a Comparative Perspective', Comparative Labor Law and Policy Journal, 29, pp. 317--40. Copyright© 2008 Comparative Labor Law and Policy Journal. Copyright Clearance Center for the essays: David Wasserman (200 1), 'Philosophical Issues in the Definition and Social Response to Disability', in Gary L. Albrecht, Katherine D. Seelman and Michael Bury (eds ), Handbook ofDisability Studies, Thousand Oaks, CA: Sage, pp. 21951. Copyright© 2001 Sage Publications Inc.; Mark Kelman (2000), 'Does Disability Status Matter?', inLeslieP. Francis, S.J. Quinney and Anita Silvers (eds),AmericanswithDisabilities: Exploring Implications of the Law for Individuals and Institutions, London: Routledge, pp. 91-101. Copyright© 2000 Taylor & Francis Group; Anita Silvers (2001), 'Agency and Disability', in Lawrence C. Becker and Charlotte B. Becker (eds), Encyclopedia of Ethics, 2nd edn, London: Routledge, pp. 36--40. Copyright© 2001 Taylor & Francis Group; Mark

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S. Stein (2006), 'Utilitarianism and Distribution to the Disabled', in Distributive Justice and Disability: Utilitarianism against Egalitarianism, New Haven, CT: Yale University Press, pp. 33-54. Copyright© 2006 Yale University Press; Christine Jolls (200 I), 'Antidiscrimination and Accommodation', Harvard Law Review, 115, pp. 643-99. Copyright© 2001 Harvard Law Review Association. Gallaudet University Press for the essay: Kristen Harmon (20 10), 'Deaf Matters: Compulsory Hearing and Ability Trouble', in Susan Burch and Alison Kafer (eds), Deaf and Disability Studies: Interdisciplinary Perspectives, Washington, DC: Gallaudet University Press, pp. 31-47. Georgetown University Press for the essay: Deborah Kent (2000), 'Somewhere a Mockingbird', in Erik Parens and Adrienne Asch (eds), Prenatal Testing and Disability Rights, Washington, DC: Georgetown University Press, pp. 57-63. Copyright © 2000 Georgetown University Press. Hart Publishing for the essay: Sandra Fredman (2005), 'Disability Equality: A Challenge to the Existing Anti-Discrimination Paradigm?', in Anna Lawson and Caroline Gooding (eds), Disability Rights in Europe: From Theory to Practice, Oxford: Hart, pp. 199-218. Copyright © 2005 Editors and Contributors. lntersentia for the essay: Anna Lawson (20 I 0), 'Challenging Disabling Barriers to Information and Communication Technology in the Information Society: A United Kingdom Perspective', in Lisa Waddington and Gerard Quinn (eds ), European Yearbook of Disability Law, Cambridge: lntersentia, pp. 131-48. Ohio State Law Journal and Adrienne Asch 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. 391-423. Oxford University Press for the essay: Michael L. Perlin (2011), 'Mental Disability Law in a Comparative Law Context', in International Human Rights and Mental Disability Law: When the Silenced are Heard, Oxford: Oxford University Press, pp. 43-57. Copyright© 20 II Oxford University Press. Palgrave Macmillan for the essay: Tobin Siebers (2008), 'Disability Studies and the Future of Identity Politics', in Disability Theory, Ann Arbor: University of Michigan Press, pp. 70-95. Copyright © 2008 Palgrave Macmillan. South End Press for the essay: Eli Clare (2009), 'The Mountain', in Exile and Pride, Cambridge, MA: South End Press, pp. 1-13. Copyright© 2009 South End Press. Taylor & Francis Group for the essay: Tom Shakespeare (2006), 'Critiquing the Social Model', in Disability Rights and Wrongs, Abingdon: Routledge, pp. 29-53. Copyright© 2006 Taylor & Francis.

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Temple University Press for the essay: Allison C. Carey (2009), 'Reimagining Retardation, Transforming Community', in On the Margins a/Citizenship: Intellectual Disability and Civil Rights in Twentieth-Century America, Philadelphia: Temple University Press, pp. 183-212. Copyright© 2009 Temple University Press. University of North Carolina Press for the essay: Michael Berube (2006), 'Was I Ever Wrong', in Rhetorical Occasions: Essays on Humans and the Humanities, Chapel Hill: University of North Carolina Press, pp. 328-31. Copyright© 2006 Michael Berube. University of Michigan Press for the essay: Simi Linton (2007), 'What I Learned', in My Body Politic, Ann Arbor: University of Michigan Press, pp. 108-20. Copyright© 2007 Simi Linton. Yale University Press for the essay: Samuel R. Bagenstos (2009), 'Disability, Life, Death, and Choice', in Law and the Contradictions of the Disability Rights Movement, New Haven, CT: Yale University Press, pp. 95-115. 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. Publisher's Note

The material in this volume has been reproduced using the facsimile method. This means we can retain the original pagination to facilitate easy and correct citation of the original essays. It also explains the variety of typefaces, page layouts and numbering.

Series Preface What is discrimination in the twenty-first century? What is equality? The Library ofEssays on Equality and Anti-Discrimination Law presents both classic and cutting-edge perspectives on these challenging questions. Across titles that focus on age, disability, gender, race, religion and sexuality, the Library is a robust introduction to the field for newcomers and an invaluable resource for experts. Each volume in the series includes many of the most important, thought-provoking, and hard-to-find works in its area, together with an introductory essay by a leading scholar. This essay situates the volume's articles and chapters within the larger body of related scholarship, highlights cross-cutting themes, and provides a roadmap for readers to continue their explorations. The compiled selections then allow the field to unfold, at least in part, through side-by-side review of the works. Strikingly, although each volume has its own identity-based focus, many of the most important inquiries cross disciplinary boundaries, with insights from one volume carrying over to the next. A careful read of the race discrimination volume, for example, will produce new insights regarding age discrimination, and vice versa. The same is true for the volumes on disability, gender, religion and sexuality. Chief among the inquiries are questions about how best to conceptualize identity and distinguish between permissible different treatment and impermissible discrimination. As the works make clear, scholars' theories of discrimination and equality are at least as varied as their ideas about identity. Not surprisingly, a similar complexity runs through the regulations and policies that lawmakers produce. And the global perspective offered in the volumes reinforces that while geography inevitably plays a role, state lines -though important- are only one among many factors that influence the development of law and scholarship in this area. Because law has such an ambivalent relationship to identity and discrimination, the fields that are this Library's focus are defined at least as much by the questions scholars pose as by the answers they offer. The focus on inquiries, rather than outcomes, is important too because the political, social, and economic conditions that inform our understandings of discrimination and equality inevitably change over time. So, likewise, do our understandings of age, disability, gender, race, religion and sexuality and the relationships among these aspects of identity. Each volume in the series, both on its own and as part of the full collection, is thus an important source for the questions that help define the contours of each field, even as the underlying terrain continues to shift. SUZANNE B. GOLDBERG Columbia University, USA

Introduction The social model of disability has been called 'the big idea' of the disability rights movement.' Both the meaning and the value of the social model are contested, however. Broadly stated, the social model is a challenge to the pervasively assumed but rarely defended medical model, which views disability as an individual medical problem to be cured or pitied. By contrast, the social model focuses on the socially constructed dimensions of disability, the way that disability results from the interaction between impairment and the surrounding social and built environment. Beyond this rough sketch of the social model, questions abound. For instance, what is impairment, and how much of a role does it play in disability? Can impairment and disability be meaningfully separated? What functions, if any, does the social model of disability serve? What limitations or obstacles does it present? And what is the significance of classifying individuals as 'disabled' for legal or other purposes? The contributions in Part I of the volume address these and other foundational issues. Definitions and Models

Michael Oliver (1990) and Vic Finkelstein (1980) are generally credited with developing the idea of the social model in academic form, building on the work of the Union of the Physically Impaired Against Segregation (UPIAS) activists in 1970s Britain. Part I therefore begins with an essay by Oliver defending the idea in light of subsequent criticism. In Chapter 1, 'Defining Impairment and Disability: Issues at Stake', Oliver distinguishes the UPIAS social model from both the World Health Organization's International Classification oflmpairment, Disability and Handicap and the Disabled People's International definition of disability, both of which he views as normalizing. Oliver addresses the criticism, among others, that the social model of disability fails to attend to the reality of impairment in disabled people's lives. He responds by positing the need for a theory of impairment alongside the social model of disability. Ultimately, he argues that, in spite of the criticisms, the social model is alive and well, with ongoing relevance for social policy and for personal transformation in the lives of disabled people. David Wasserman's essay on 'Philosophical Issues in the Definition and Social Response to Disability' (Chapter 2) aims to clarify analytically a series of points about the definitional components and philosophical implications of an account of impairment and disability. In contrast to Oliver, Wasserman takes impairment as his starting point. He understands impairment to involve functional limitation and considers the possibility, and the implications, of a value-neutral account of impairment. Without attempting to resolve them, Wasserman examines debates about whether impairment is relevant to well-being and on what account. He

See Tom Shakespeare. Chapter 5 in this volume (p. 79; quoting Hasler, 1993).

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then turns to the implications of impairment for questions of justice, whether on a distributive justice or an anti-discrimination account. Chapter 3, 'What I Learned', is an excerpt from Simi Linton's rich and elegant autobiography My Body Politic. This essay describes her process of embracing the term and identity 'disabled woman'. She explains her initial resistance to disability identity, fearing that it would '[c]onsign me to an itty-bitty life' (p. 53). Over time, she reached the opposite conclusion. By affiliating with other disabled people and affirming the role of disability in her own life, she could effectively critique how social structures naturalize discrimination and engender alienation. The essay includes a particularly concise and vivid articulation of the social model: Linton explains how, as a college professor, she started to foreground disability in her classes; she would highlight its social construction by asking her students, 'Ifl want to go to vote or use the library, and these places are inaccessible, do I need a doctor or a lawyer?' (p. 65). The students would respond by drawing insightful connections between disability, race and gender, contributing to Linton's conclusion that much was to be gained 'not by denying my disability or, implausibly, "overcoming" it, but by sailing headlong into it' (p. 65). In 'Critiquing the Social Model' (Chapter 4), Tom Shakespeare challenges the social model conceptually, practically and strategically. Shakespeare contends that the social model 'has now become an obstacle to the further development of the disability movement and disability studies' (p. 71). Importantly, Shakespeare's target is specifically the UPAIS social model- which views disability as entirely social (see Oliver)- and not the larger 'family of social-contextual approaches to disability' (p. 72), which he mentions here and explains more fully in a subsequent chapter of his book. Some of his critiques, however, reach beyond the UPAIS approach. Shakespeare specifically disputes Oliver's call for a separate theory of impairment alongside the social model of disability. He says separate theories are impossible because impairment cannot be separated from disability: the concept of disability relies on a concept of impairment, and the precise limitations created by impairment alone are hard to specify. He nonetheless posits that, for many individuals, impairment does involve a residual disadvantage, beyond what society attaches to it. More broadly, he highlights the significance of impairment in the lives of many disabled people, drawing on the work of numerous scholars and activists who have made this point about a range of impairments. Shakespeare also challenges the plausibility and even the desirability of a barrier-free world, contending that barrier removal should be understood merely as one of several strategies to 'facilitate the participation and improve the quality of life of people with impairment' rather than as an end in itself (p. 88). His overarching aim is to dislodge the social model from its position as a kind of 'litmus test' (p. 70) for political and theoretical contributions to disability politics and theory in order to allow a more honest and realistic conversation about policy and about life. Eli Clare's 'The Mountain' (Chapter 5) turns critique into poetry. Like Shakespeare, Clare explicitly challenges Oliver's distinction between impairment and disability, but does so through narrative - what might be described as a narrative of overcoming overcoming. Unlike Shakespeare, Clare seems to accept that Oliver's version of the social model 'makes theoretical and political sense', but he disputes the idea that it makes 'emotional' sense (p. 102). Clare shows how his decision not to finish climbing a formidable mountain with a friend represents a reclaiming of his stolen body - a body stolen both by intimate and public

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abuse and by supercrip narratives, first external and then internalized. He offers this story of accepting a particular limitation as a defiant act of coming home. Mark Kelman's 'Does Disability Status Matter?' (Chapter 6) forms a bridge to our next section on theories of equality and inclusion. Kelman considers the question of whether and why the classification of 'disabled' should matter to a person's claim to anti-discrimination and accommodation protections. We could, Kelman points out, entitle every person regardless of disability (or any other classification)- to protection against irrational denial of employment or other goods. And we could provide accommodation to everyone who requires it to do a particular job, regardless of whether that person has a disability. 2 So why, Kelman asks, provide legal protections based on disability status in particular? He considers various possible explanations, concluding that only a subset of them really depends on group statusfor instance, arguments that the market is more likely to fail members of subordinated groups or that market failures accompanied by stigma particularly warrant remedies. Kelman thus concludes this section with an introduction to the question of why definitional questions might matter to the project of legal remedies. Important questions about the social model remain for future work. Even if we assume that the social model serves some useful purposes, we still need to ask if it offers the best approach to defining disability in particular contexts. For instance, does defining disability on a social model in legal instruments benefit or burden individual claimants? Although a social model may seem preferable to a medical model, here as elsewhere there is reason to ask whether social model definitions may inspire courts (and other administering entities) to demand proof of both medical and social obstacles. 3 The remaining sections of the volume present, respectively, theories of equality and inclusion, implications of accommodation and access, and perspectives on life and death. Before proceeding to discuss the rest of the volume, however, we draw the reader's attention to the fact that debates about the social model fuel disagreements over language. Notably, 'people first' language is popular in the United States but rankles in the United Kingdom. A term like people with disabilities sounds like a denial of the social model to those who think the term disabled people best captures society's role in disablement. People with disabilities sounds, to many European ears, like an acceptance of the medical model idea that disabilities are individual impairments, rather than the result of social forces. (That is, if disability is inflicted on people by society, rather than arising from medical origins, then how can a person be 'with' a disability?) To many US ears, by contrast, people with disabilities properly puts the person first, casting the impairment or disability as secondary and even external (see, for example, Shapiro, 1993; Linton, Chapter 3 in this volume). 4 The authors in this volume

Kelman offers, by way of example. parents of young children -whom he rather surprisingly calls people with 'atypical caretaking responsibilities' (p. ll3)- since they might benefit from a reduced work schedule like the one required by someone with cancer receiving time-consuming treatment. On the related theme of difficulties created by the social model across legal contexts, see, for example, Pet:iu (20 ll ). More generally, for foundational work on the problems of making constructivist arguments in court. see Goldberg (2002). Although Linton explains the 'people first' language, she ultimately embraces the term 'disabled woman' as better representing her identity and affiliation with the disability community.

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variously adopt the two types of terminology, and we move between them in this introduction, recognizing the appeal and the difficulties of both approaches. Theories of Equality and Inclusion

Part II begins with Sandra Fredman's ambitious 'Disability Equality: A Challenge to the Existing Anti-Discrimination Paradigm?' (Chapter 7). Fredman lays out key themes surrounding disability equality: the difference-equality debate, the minority-group model versus universalism controversy and the contested role of costs. She also discusses the analogies between race and sex, on the one hand, and disability, on the other, drawing on examples from the law of the United Kingdom, Europe and beyond. Ultimately, she argues for a vision of substantive equality that builds on the insights of universalism to place positive duties on governments to reconfigure the norm to incorporate social diversity, particularly attending to 'the wide range of impairments which might affect anyone during their normal life cycle, whether as a subject or a carer' (p. 137). Fredman thus offers a theory of equality as well as an important introduction to the concept of mainstreaming. In Chapter 8, 'Critical Race Theory, Feminism, and Disability: Reflections on Social Justice and Personal Identity', Adrienne Asch builds on the insights of critical race theory to argue for a simultaneous demand for rights and a critique of those rights. She contends that we should not be surprised by courts' resistance to the Americans with Disabilities Act in the light of critical race theory's point that discrimination is the norm and dominant groups will not change things until they see how change benefits them. In part for this reason, Asch, like Fredman, presses a universalizing view of disability that appreciates everyone's potential relationship to disability over the life cycle (see Scotch and Schriner, 1997). She strongly endorses integration as a goal, while recognizing the need for disability community and identity at least until full inclusion is achieved. In Chapter 9, 'Antisubordination Above All', from her recent book When Is Separate Unequal?, Ruth Colker argues for an anti-subordination approach to disability equality. Drawing lessons from US racial history, Colker argues that the disability movement in the United States has mistakenly pursued integration as an end in itself. By contrast, her preferred anti-subordination approach focuses on power and domination, recognizing that the best remedies may sometimes involve different or separate treatment of subordinated groups. 5 Anita Silvers' 'Agency and Disability' (Chapter 10) considers the question of what equality theory should do with those individuals falling outside the ambit of the social model: impaired individuals whom 'no reform of social practice, nor improvement in environment or situation' can render 'self-determining' (p. 208). She introduces and critiques the dominant approaches of, on the one hand, increasing recognition of dependency (rather than agency) as the human condition and, on the other, expanding how agency is understood so as to broaden the group of those recognized as moral agents. This challenging topic is developed further in lengthier works by Silvers and others (for example Silvers, Wasserman and Mahowald, 1989; Nussbaum, 2006; Stein, 2007). Notably, this perspective is held by many Deaf persons. See, for example, Burch (2004); Padden and Humphries ( 1988).

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Susan Stefan, in Chapter 11, 'The Landscape of Discrimination Today', offers a vivid portrayal of the cumulative and interrelated forms of discrimination faced by people with psychiatric disabilities (or psychosocial disabilities) across public and private contexts in the United States. This introductory chapter of her book Unequal Rights argues that people with psychiatric disabilities face a different and harsher landscape of inequality than people with many other disabilities. She contrasts the 'benign neglect and indifference' commonly blamed for disability discrimination in general with the 'intentional differentiation and disadvantaging of people with psychiatric disabilities' in particular (p. 227). In Chapter 12, 'Mental Disability Law in a Comparative Law Context', Michael Perlin writes about the legal responses to this pervasive discrimination, moving beyond the US context to Europe, South America and Africa. In this chapter from his International Human Rights and Mental Disability Law, Perlin illuminates how courts evaluate claims brought by persons with mental disabilities- focusing on psychosocial disabilities- in order to anticipate how courts will evaluate human rights claims in this context. (Work in Part IV of our volume focus on issues involving intellectual disabilities.) Kristen Harmon's 'Deaf Matters: Compulsory Hearing and Ability Trouble' (Chapter 13) challenges the category of disability through a Deaf lens. Drawing on Robert McRuer (2006) (and implicitly Adrienne Rich's Compulsory Heterosexuality and Lesbian Existence (1982)), Harmon uses a series of interpellations from the hearing world to reconsider compulsory able-bodiedness. She examines terminological quandaries, such as the search for terms emphasizing shared language rather than hearing status, in the effort to move away from tired 'binaries of loss and function' (p. 278). Rejecting the disability identity and label as inapt for a community organized around shared language, Harmon proceeds to ask what real 'mutuality in conversation' between d/Deaf and non-d/Deaf might mean in Disability Studies (p. 282).

Accommodation and Access Part III on Accommodation and Access gives both an introduction and an in-depth look at legal and theoretical dimensions of the accommodation requirement and debates around access viewed through a comparative and international lens. Lisa Waddington's 'When it is Reasonable for Europeans to be Confused' (Chapter 14) begins the section by excavating the meaning of reasonable accommodation across European jurisdictions. Article 5 of the European Union's Employment Equality Directive requires Member States to impose on employers a duty of 'reasonable accommodation' of disabled employees. Aptly identifying the ambiguity in this phrase, Waddington delineates three key meanings of' reasonableness': effectiveness (modifYing the accommodation), costeffectiveness (modifying the employer's duty) and a combination of the two. She traces these interpretations through various European jurisdictions, highlighting the influential role and the limitations of the US approach. Waddington thus provides a framework for understanding this crucial legal category. 6 In Chapter 15 Anna Lawson examines a particular and pressing problem of access: barriers to information and communication technology in this increasingly digital age. Framing her For a more thorough treatment, see Lawson (2008).

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discussion with the provisions of the United Nations Convention on the Rights of Persons with Disabilities dedicated to information and communication technology, Lawson traces the progress and hurdles thus far encountered in the specific context of the United Kingdom. 7 She highlights both the reactive features of UK equality law, such as the employment-based reasonable adjustment duty, and positive duties to promote disability equality- most notably, the 'disability equality duty', which requires public authorities to mainstream consideration of disability accessibility. Lawson observes that the United Kingdom bridges European and US approaches to access in this area by utilizing both social-protection schemes more common in Europe and the equality-law strategies more common in the United States. She argues that hybrid approaches are vital to tackling the sizable problem of information access in the contemporary era. Christine Jolls, in Chapter 17, turns us squarely to the US context for a look at a pivotal set of debates about the relationship between accommodation requirements and anti-discrimination demands. Increasingly in the United States, discrimination is understood to mean any kind of differentiation along protected classifications, like race or sex. This calls into question fundamental features of anti-discrimination regimes, such as affirmative action or disparate impact (indirect discrimination), that require attention to the group classification and action on that basis. Jolls argues that anti-discrimination and accommodation requirements are much more similar than commonly appreciated. First, she observes that disparate impact law is essentially an accommodation requirement because it requires an employer to change the rules (typically for everyone) in response to their differential impact only on some. Second, she also points out that other widely accepted features of anti-discrimination law - such as the ban on deferring to customers' or co-workers' discriminatory preferences or the ban on using protected classifications to make job decisions even where those classifications are statistically efficient proxies for work-related qualifications - are similar to accommodation requirements in that these bans require employers to bear costs to employ the less appealing group. 8 In light of recent developments in US case law, 9 it is important to underscore a feature of Jolls's argument not foregrounded in the frame of the essay. Her argument that there are costs associated with core features of anti-discrimination law extends to what US courts commonly treat as the central demand of employment discrimination statutes: the simple prohibition on disparate treatment. Jolls makes this argument through the effects of anti-discrimination law on wages and employment levels, in the light of costs borne by employers as a result of, for example, the costs of restrictions on workplace conditions or of lawsuits that might be brought, whether legitimate or not (pp. 343-48). To this we might add that, in order to avoid lawsuits, companies must expend substantial resources to screen and train supervisors and therefore fund Human Resources departments to effect this work. These costs to avoid simple disparate treatment also operate like the costs of accommodations. Moreover, Jolls brings in Although Lawson's essay refers to the Disability Discrimination Act 1995, which has now been replaced by the Equality Act 2010, much of the substance of the legal provisions remains the same. An analysis ofthe disability provisions of the Equality Act is contained in Lawson (2011). As .Tolls acknowledges, this point had been previously made, for instance by Bagenstos (2000, pp. 456-57 and n. 223); see also Stein (2003). See, for example, Ricci v. DeStefano, 557 U.S. 557 (2009).

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some other important points towards the end of the essay (pp. 387-89), drawing on the vast literature (some of it included in Part I of this volume) on the ways the environment creates the conditions that require some people and not others to need 'accommodation'. In this way, again, the failure to accommodate looks rather like simple discrimination. The US debates over the relationship between 'anti-discrimination' and 'accommodation' demands are likely to take on new practical dimensions in the coming years under the Americans with Disabilities Amendments Act 2008, which should put pressure on courts to decide when accommodations are required by law. More specifically, because the Act explicitly denies accommodation for those who are only 'regarded as' disabled, courts will be forced to decide when a particular claim involves accommodation and when it involves only non-accommodation discrimination- whatever precisely that might mean. 10 Mark Stein's 'Utilitarianism and Distribution to the Disabled' (Chapter 17) introduces debates about who should have access to resources as between disabled and non-disabled people under a principle of utility. 11 Stein is arguing against those who claim that utilitarianism -defined here as 'distribut[ing] resources to the people who would most benefit from those resources' (p. 393) - would necessarily mean distributing fewer resources to people with significant disabilities. 12 Stein argues that utilitarianism will sometimes require distributing more resources to people with disabilities and that, where utilitarianism might plausibly require the opposite, the particular circumstances make this not an obviously unfair or troubling result. Some of Stein's points will engender criticism, whether politically or empirically. On the political side, his arguments at times assume that cure is the best response to disability, a position many disability advocates dispute (see, for example, Shapiro, 1993, p. 14). On the empirical side, some of Stein's arguments rely on the assumption of declining marginal utility, which, though prevalent, has been seriously called into question (Lawsky, 2011). Moreover, his assumptions should be situated alongside the growing literature in hedonics, which suggests that non-disabled people commonly overestimate the gap between the happiness of disabled and non-disabled people (Bagenstos and Schlanger, 2007). None of these points, however, dislodges Stein's central points that disabled people are sometimes the most efficient users of resources because they can use them to overcome societal obstacles -by, for instance, purchasing a wheelchair, in the case of someone with mobility issues- or that disabled people are sometimes no less efficient users of resources at the margin in wealthy societies. Along the way, Stein also touches on some points about accommodation worth highlighting. For instance, he notes the 'insurance aspect' of many laws and resource allocations to disabled people, given that anyone can acquire a disability at any time and most people will acquire 1° For discussion, see Emens (2012). Courts are likely to rely heavily on the use of 'comparators' to draw these distinctions; for an incisive analysis of the predominance and problems of comparator methodology in US anti-discrimination law, see Goldberg (20 II). 11 The term non-disabled is of course a confusing if not misleading, though sometimes necessary, one- implying as it does two categories of people. Typically, it means one of two things: l) the social category of people who neither consider themselves disabled nor are considered disabled by society, so it rests on social or political understandings; or 2) 'a person who does not have the particular disability at issue' or 'who is not disabled for these purposes' as when Stein talks about the contrast 'between the nondisabled and those barely able to hear' (p. 349). 12 Stein understands benefit as 'an increase in welfare' not wealth.

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disabilities if they are fortunate enough to live that long (p. 400). Moreover, Stein observes that accommodations for people with disabilities often provide benefits to people who do not share their disabilities. Obvious examples of this are ramps and elevators, which are used by people with prams and luggage, but less obvious examples abound - for instance, voice to text technologies, ergonomic furniture or modified managerial styles (see, for example, Stein, 2003; Sturm and Gadlin, 2007; Emens, 2008)_13 In Chapter 18 Tobin Siebers takes us into new terrain by suggesting that the future of disability studies- as well as that of identity politics more generally- is to reconceive the binary trope of inclusion versus exclusion through the lens of accessibility versus inaccessibility for people of all types. Working from a baseline that understands that 'all worlds should be accessible to everyone' (p. 443), he avers, will enable ideas of universal access to transform future political goals. Siebers offers a trenchant critique of the critiques of identity politics by thinkers on both the Right and the Left, showing how these critiques rely on denigrating conceptions of disability. This chapter from Siebers' Disability Theory, among its other contributions, foreshadows his subsequent endeavours to identify the unique contribution that disability makes to knowledge and understanding across categories and disciplines (Siebers, 2011). The essay closes with Siebers' elegant statement of the consequences ofthinking in terms of access: 'disability studies might effect a sea change by asking that the inclusionexclusion binary be reconceived in terms of accessibility and inaccessibility ... all worlds should be accessible to everyone, but it is up to individuals to decide whether they will enter these worlds' (p. 443). Life and Death

Samuel Bagenstos frames our concluding section on life and death with a chapter from his incisive Law and the Contradictions of the Disability Rights Movement. In Chapter 19 Bagenstos shows how debates over assisted suicide, selective non-treatment of infants with disabilities, prenatal testing and selective abortion illuminate tensions in the anti-paternalism of disability rights thinking. For instance, in the assisted suicide context, Not Dead Yet takes the position that the paternalism of family members and medical professionals will so impede an individual's decision-making that the law should prohibit assisted suicide, while Autonomy Inc. argues that disabled people have been deprived of the right to make their own decisions far too often for the state to justify an absolute ban in this context. Bagenstos usefully traces relationships between the positions taken across both end of life and beginning of life decision-making. Deborah Kent's 'Somewhere a Mockingbird' (Chapter 20) is an account of her realization, through the process of becoming a parent, that the people closest to her do not accept her blindness as a neutral trait, as she does. Kent powerfully describes the testing she underwent before becoming pregnant, the entry into the world of her first child and her family's reactions

13 These benefits, though long overlooked in US legal sources, have recently been recognized in the regulations to the Americans with Disabilities Act Amendments Act. See 76 Fed. Reg. 16997-98 (Mar. 25, 2011) (citing Emens, 2008).

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to discovering her daughter's sightedness. It is a story about love, loneliness, hope and disappointment. Kent's essay was republished as part of an important volume on Prenatal Testing and Disability Rights (2000) edited by Erik Parens and Adrienne Asch, which is usefully framed by Asch's foundational work in this area with David Wasserman (Asch and Wasserman, 2005; Asch and Wasserman, 2010; Wasserman, 2011). Kent's discussion of the challenge of understanding her non-disabled loved ones also calls to mind an essay by Harriet McBryde Johnson that should be read in conjunction with this section. In 'Unspeakable Conversations' (2003), Johnson recollects her surprisingly cordial meeting with Peter Singer at Princeton, where they debated topics such as whether people with disabilities like hers should be allowed to exist at all. She tries to explain why she, unlike others in her life, could not see Singer as a monster. His views, she observes, are simply not so far from the views of so many people she encounters every day, both near and far. In this vein, she writes: 'The peculiar drama of my life has placed me in a world that by and large thinks it would be better if people like me did not exist. My fight has been for accommodation, the world to me and me to the world' (p. 50). Allison Carey's essay 'Reimagining Retardation, Transforming Community' (Chapter 21) forms a bridge between Bagenstos and Kent, on the one hand, and Shakespeare, GillespieSells and Davis (1996), on the other. While the essay concludes with an interesting discussion of particular life and death issues - of the death penalty and of prenatal testing - the bulk of Carey's piece centres on 'life' in the much broader sense of managing, controlling and living one's own life. In this chapter from her larger work, On the Margins of Citizenship: Intellectual Disability and Civil Rights in Twentieth-Century America, Carey tells the story of Self-Advocates Becoming Empowered (SABE), a progressive US self-advocacy group for people with intellectual disabilities. Founded in 1991, SABE has fought for policies that 'mov[e] from agency control to consumer control' (p. 484) - including, of course, deinstitutionalization but also more generally person-centred planning and individualized support approaches. In short, SABE's agenda has been to enact this principle from a position statement issued in 2003: 'We have the right to make our own decisions with or without the support from others. WE CAN RUN OUR LIVES' (p. 485). Shakespeare, Gillespie-Sells and Davis's The Sexual Politics ofDisability is a foundational text about sexuality. We include as Chapter 22 Tom Shakespeare's introductory chapter from that book to introduce the topic and to frame the project of their book, which is based on interviews with forty-two disabled individuals of diverse orientations and relationships to sex. The authors are highly critical of society's generally dismissive attitude to the sexual lives of disabled people, particularly those with non-normative sexual orientations. Unfortunately, nearly two decades later, this criticism is still apt. By contrast, and more positively, their claims that disability scholarship ignores sexuality are by now overstated; since their groundbreaking work, a significant body of work has grown up in this area (a few examples include Denno, 1997; Baer, 2003; McCabe and Taleporos, 2003; Shildrick, 2007; Wright eta/., 2007; Rembis, 2008). Indeed, one scholar now claims that there is no room in the disability community for an affirmative vision of asexuality (Kim, 20 11). Shakespeare's essay ends with a first-person narrative that exemplifies the author's refusal to sugar coat the topic: 'Caroline' expresses dissatisfaction with her own sex life and the surrounding society, though without resignation; she concludes by suggesting that more can and should be demanded.

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Michael Berube closes the volume with his 'Was I Ever Wrong' (Chapter 23). Berube documents a sliver of the ways that, one decade ago, he misapprehended what his son Jamie, who has Down syndrome, would be able to do- specifically what kind of relationship Jamie could have with the Beatles' oeuvre. To conclude the volume, we chose this remorseful yet playful little essay both for its humble acknowledgement of a mistake and for its recognition of how much we all still have to learn. The imbricated fields of disability studies, disability rights, Deaf studies and human rights have deep roots but are also still quite new. Berube reminds us that in these realms change is constant, mistakes are inevitable and the prospects for the future may well outrun our current imaginings. Future Prospects

Moving forward, what are the prospects for reinvigorating normative theories of disability and equality both as abstract legal ideals and as rights in practice? Within the sphere of law, disability equality theory is evolving towards a human rights approach that transcends the social model and notions of formal equality. This trend is most notably elucidated in the United Nations Convention on the Rights of Persons with Disabilities (CRPD). 14 Over the last four decades, the social model has empowered disability rights advocates around the globe with a potent argument as to why some situations unnecessarily exclude disabled persons and are thus discriminatory. 15 The social model has thus exerted a powerful influence over the drafting and revision both of national level disability laws and of international instruments relating to disability. At the domestic level, prominent examples include the Americans with Disabilities Act and statutes from the United Kingdom, Australia and elsewhere that have followed its course. At the United Nations, a series of soft laws progressively instantiated the social model leading to the CRPD, a core human rights treaty that overtly recognizes the interactive role of the constructed environment in creating the category of disability. When advancing the social model, disability rights advocates have typically framed their assertions through a civil rights lens, claiming that laws or policies exclude disabled persons because of empirically unproven assumptions much the way earlier laws or policies excluded people of colour or women. Accordingly, once attitudes are corrected and attendant barriers removed, people with disabilities should be able to participate in the entire gamut of social opportunity on an equal basis with others who happen not to have disabilities. Yet, because this very influential disability rights advocacy harkens back to notions of formal justice - treating like as like - it has in turn restricted itself to anti-discrimination remedies that prohibit discrimination and promote equality of opportunity. 16 In doing so What follows on human rights is drawn from Stein (2007). Susan Wendell ( 1996) puts it well: 'Much of the public world is ... structured as though everyone were physically strong, as though all bodies were shaped the same, as though everyone could walk, hear, and see well, as though everyone could work and play at a pace that is not compatible with any kind of illness or pain' (p. 39). 16 Even reasonable accommodations, which some have understood as akin to affirmative action (see .Tolls, Chapter 16 in this volume), tend merely to level some of the uneven playing field within the 14

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disability rights advocates have not adequately embraced at a theoretical level, or sufficiently pushed in practice for, positive equality measures (such as affirmative action) or additional social rights (such as health care or education) that would guarantee equality of outcome. 17 Thus, when utilizing the social model, disability rights advocates historically have not argued that people with disabilities be empowered to participate on an equal basis with others in the workplace and retain social welfare benefits and be the recipients of job set-aside schemes. Nothing in the social model inherently precludes such assertions, yet for years the realm of social and economic rights was neglected and to date very little jurisprudence has been developed on-point. It is therefore significant and bold that Fredman argues in Chapter 7 for a pairing of types of rights in order to achieve substantive equality. 18 In addition, reconceiving of disability rights in this holistic manner circumvents the efforts that Jolls and others (Stein, 2004; Emens, 2008) need to make under a civil rights/social model arguing for the similarity or equivalence of accommodations to other forms of anti-discrimination protection. Strong prospects for broadening the nature of equality sought by disability advocates arrived in 2006 when the United Nations adopted the Convention, a legally enforceable human rights treaty now ratified by some 114 states. The treaty is a holistic human rights instrument, embracing both civil and political rights (like voting and legal capacity) as well as social rights (such as employment and standard of living). To illustrate, the article on employment and work prohibits discrimination in the workplace while also encouraging states to provide affirmative measures such as vocational training. In doing so, the CRPD has paved the way for global disability law and policy reform that is having a significant effect across the globe. The door has thus opened for what Oddny Mjoll Arnard6ttir calls an approach to 'multidimensional disadvantage equality' to address the varied and interrelated causes of social exclusion of persons with disabilities. In other words, the Convention opens the door to a coherent response to marginalization that understands how inadequate education, employment or health care in turn affects the likelihood of poverty or increased barriers to a range of social opportunities (Arnard6ttir, 2009). This approach, in essence, bolsters Fredman's account and also responds to Samaha's trenchant critique of the social model (2007) as identifying causes but not solutions. It likewise views the human rights agenda as paving the way for human flourishing by enabling the development of capabilities and talents (Stein, 2007). Optimism arising from the Convention and its national-level effects must also be grounded in concerns that although human rights treaties and domestic laws may proclaim equality for persons with disabilities, their lived experiences often reflect a more bleak reality. This gap between legal aspiration and practical existence is due to prejudicial social attitudes and requires deep cultural change if it is to be ameliorated. Thus, although Article 8 of the treaty workplace and other specified domains, rather than addressing inequalities that extend beyond these boundaries (see Bagenstos, 2004; Stein, 2004). 17 Indeed, a central theme of Bagenstos (2009) is that within the American context these tensions have prevented the development of more effective advocacy and allowed the judiciary to ground denials of rights in schemas drawn from the domestic disability rights movement. 18 Interestingly, two scholars attempt to bridge this divide by arguing that the provision of reasonable accommodations can enable substantive equality by placing persons with disabilities in position to access those rights (Brown and Lord, 20 II).

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mandates that States Parties work towards breaking down social stigma, we are unlikely to experience significant attitudinal shifts until society itself takes that mandate to heart. When considering how to combat stereotypes regarding disability- whether as a technical response to Article 8 or as an enterprise of good governance - states might consider the role they play in fostering intimate discrimination. 19 Intimate discrimination refers to the ways that people discriminate in their dating, sex and family lives. Recent work has shown how people's intimate decisions- commonly thought to be purely private choices- are heavily influenced structural features of the environment created or facilitated by state power (Robinson, 2008; Emens, 2009). Of course, many countries have a history. or an ongoing practice, of formally restricting access to marriage for people with certain disabilities, particularly those with psychosocial and intellectual disabilities. Much more broadly, state policies determine who can enter certain buildings, hold certain jobs, occupy certain housing and access certain benefits. In a whole range of ways. by structuring our environments, states determine who meets whom and how. Overcoming intimate discrimination that disfavours people with disabilities can thereh)re be an additional reason to support wide-ranging state policies such as equalizing access to social and material goods and improving accommodation in workplaces, housing, education and public accommodations. Moreover, a focus on the intimate sphere can support innovative thinking about how access is designed. Accommodation may allow people with disabilities to enter a building, but a more nuanced attention to the architecture of intimacy is required to enable closeness. This means making accessible spaces more intimate - for instance, asking questions about whether public accommodations are designed to allow people in chairs to sit with friends and to sit close to close friends, and whether universities offer sign language instruction as a way to meet language requirements. And it means making intimate spaces more accessible - for instance, expanding on the early efforts of the visitability movement to demand that private housing meet at least minimum accessibility standards, so that disabled people can be welcomed into the homes of friends and lovers. 20 Until equal access extends to the intimate sphere, we will be hard pressed to say that disabled and non-disabled people have equal opportunities for flourishing in contemporary society. Intimate interactions are so often the place where individuals share their deepest sense of self and acknowledge others as truly their peers. If change can occur at that level of interaction, then prospects for eliminating other, more public, attitudinal barriers seem promising.

References 76 Fed. Reg. 16997-98. Arnard6ttir, O.M. (2009), 'A Future of Multidimensional Disadvantage Equality?', in O.M. Arnard6ttir and G. Quinn (eds), The UN Convention on the Rights of Person with Disabilities: European and Scandinavian Perspectives, Leiden: Brill, pp. 17--42. Asch, A. and Wasserman, D. (2005), 'Where is the Sin in Synecdoche? Prenatal Testing and the ParentChild Relationship', in D. Wasserman, J. Bickenback and R. Wachbroit (eds), Quality of Life and 19

20

What follows on intimate discrimination draws heavily on Emens (2009). For an explanation ofthe demands of the visitability movement, see Emens (2009, pp. 1390-96).

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Human Difference: Genetic Testing, Health Care, and Disability, Cambridge: Cambridge University Press, pp. 172-216. Asch, A and Wasserman, D. (2010), 'Making Embryos Healthy or Making Healthy Embryos: How Much of a Difference Between Prenatal Treatment and Selection?', in J. Nisker, F. Baylis, I. Karp in, C. McLeod and R. Mykitiuk ( eds ), The 'Healthy' Embryo: Social, Biomedical, Legal and Philosophical Perspectives, Cambridge: Cambridge University Press, pp. 201-19. Baer, R. W. (2003), Is Fred Dead? A Manual on Sexuality for Men with Spinal Cord Injuries, Pittsburgh, PA: Dorrance. Bagenstos, S.R. (2000), 'Subordination, Stigma, and "Disability"', Virginia Law Review, 86, pp. 397-534. Bagenstos, S.R. (2004), 'The Future of Disability Law', Yale Law Journal, 114, pp. 1-84. Bagenstos, S.R. (2009), The Law and the Contradictions of the Disability Rights Movement, New Haven, CT: Yale University Press. Bagenstos, S.R. and Schlanger, M. (2007), 'Hedonic Damages, Hedonic Adaptation, and Disability', Vanderbilt Law Review, 60, pp. 745-97. Brown, R. and Lord, J. (2011 ), 'The RoleofReasonableAccommodation in Securing Substantive Equality for Persons with Disabilities: The UN Convention on the Rights of Persons with Disabilities', in M.H. Rioux, L.A. Basser and M. Jones (eds), Critical Perspectives on Human Rights and Disability Law, Leiden: Brill, pp. 273-308. Burch, S. (2004), Signs of Resistance: American Deaf Cultural History, 1900 to World War JJ, New York: New York University Press. Denno, D.W. ( 1997), 'Sexuality, Rape, and Mental Retardation', University of Illinois Law Review, 1997, pp. 315--434. Emens, E.F. (2008), 'Integrating Accommodation', University of Pennsylvania Law Review, 156, pp. 839-922. Emens, E.F. (2009), 'Intimate Discrimination: The State's Role in the Accidents of Sex and Love', Harvard Law Review, 122, pp. 1366--79. Emens, E.F. (2012), 'Disabling Attitudes: U.S. Disability Law and the ADA Amendments Act', American Journal of Comparative Law, 60, pp. 205-33. Finkelstein, V. ( 1980), Attitudes and Disabled People, New York: Work Rehabilitation Fund. Goldberg, S.B. (2002), 'On Making Anti-Essentialist and Constructivist Arguments in Court', Oregon Law Review, 81, pp. 629--62. Goldberg, S.B. (2011), 'Discrimination by Comparison', Yale Law Journal, 120, pp. 728-812. Hasler, F. ( 1993), 'Developments in the Disabled People's Movement', in J. Swain, V. Finkelstein, S. French and M. Oliver (eds), Disabling Barriers, Enabling Environments, London: Open University, pp. 278-84. Johnson, H.M. (2003), 'Unspeakable Conversations', New York Times Magazine, 16 February, p. 50. Kim, E. (2011 ), 'Asexuality in Disability Narratives', Sexualities, 14, pp. 479-93. Lawsky, S.B. (2011) 'On the Edge: Declining Marginal Utility and Tax Policy', Minnesota Law Review, 95, pp. 904-52. Lawson, A. (2008), Disability and Equality Law in Britain: The Role of Reasonable Adjustment, Portland, OR: Hart. Lawson, A. (2011), 'Disability and Employment in the Equality Act 201 0', Industrial Law Journal, 40, pp. 359-83. McCabe, M.P. and Taleporos, G. (2003), 'Sexual Esteem, Sexual Satisfaction, and Sexual Behavior Among People with Physical Disability', Archives ofSexual Behavior, 32, pp. 359-69.

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McRuer, R. (2006), Crip Theory: Cultural Signs of Queerness and Disability, New York: New York University Press. Nussbaum, M.C. (2006), Frontiers ofJustice: Disability, Nationality, Species Membership, Cambridge, MA: Harvard University Press. Oliver, M. ( 1990), The Politics ofDisablement, London: Macmillan. Padden, C.A. and Humphries, T.L. ( 1988), Deaf in America: Voices from a Culture, Cambridge, MA: Harvard University Press. Parens, E. and Asch, A. (eds) (2000), Prenatal Testing and Disability Rights, Washington, DC: Georgetown University Press. Perju, V. (2011), 'Impairment, Discrimination, and the Legal Construction ofDisability in the European Union and the United States', Cornell International Law Journal, 44, pp. 279-348. Rembis, M.A. (2008), 'Beyond the Binary: Rethinking Sexualities and Disabilities' (unpublished manuscript, on file with editors, June 2008). Rich, A. ( 1982), Compulsory Heterosexuality and Lesbian Existence, Bloomington: Indiana University Press. Robinson, R.K. (2008), 'Structural Dimensions of Romantic Preferences', Fordham Law Review, 76, pp. 2787-819. Samaha, A.M. (2007), 'What Good is the Social Model of Disability?', University of Chicago Law Review, 74, pp. 1251-308. Scotch, R.K. and Schriner, K. ( 1997), 'Disability as Human Variation: Implications for Policy', Annals of the American Academy ofPolitical and Social Science, 549, pp. 148-59. Shapiro, J. (1993), No Pity: People with Disabilities Forging a New Civil Rights Movement, New York: Three Rivers Press. Shildrick, M. (2007), 'Dangerous Discourses: Anxiety, Desire, and Disability', Studies in Gender & Sexuality, 8, pp. 221--44. Siebers, T. (2008), Disability Theory, Ann Arbor: University of Michigan Press. Siebers, T. (20 11 ), 'Disability, Pain, and the Politics of Minority Identity' (unpublished manuscript, on file with editors, October 2011 ). Silvers, A., Wasserman, D. and Mahowald, M. ( 1989), Disability, Difference, Discrimination: Perspectives on Justice in Bioethics and Public Policy, Lanham, MD: Rowman & Littlefield. Stein, M.A. (2003), 'The Law and Economics of Disability Accommodations', Duke Law Journal, 53, pp. 79-191. Stein, M.A. (2004 ), 'Same Struggle, Different Difference: ADA Accommodations as Antidiscrimination', University of Pennsylvania Law Review, 153, pp. 579--673. Stein, M.A. (2007), 'Disability Human Rights', California Law Review, 95, pp. 75-122. Sturm, S. and Gad lin, H. (2007), 'Conflict Resolution and Systemic Change', Journal of Dispute Resolution, 2007, pp. 22-27. Wasserman, D. (2011) 'Disability: (When) Does Prevention Discriminate?' (unpublished manuscript, on file with editors, September 2011 ). Wendell, S. ( 1996), The Rejected Body: Feminist Philosophical Reflections on Disability, New York: Routledge. Wright, E.R., Wright, D.E., Perry, B.L. and Foote-Ardah, C. E. (2007), 'Stigma and the Sexual Isolation of People with Serious Mental Illness', Social Problems, 54, pp. 78-98.

Part I Definition and Models

[1]

Defining Impairment and Disability: issues at stake Mike Oliver INTRODUCTION For the past fifteen years the social model of disability has been the foundation upon which disabled people have chosen to organise themselves collectively. This has resulted in unparalleled success in changing the discourses around disability, in promoting disability as a civil rights issue and in developing schemes to give disabled people autonomy and control in their own lives. Despite these successes, in recent years the social model has come under increasing scrutiny both from disabled people and from others working in the field of chronic illness. What I want to explore in this chapter are some of the issues that are at stake in these emerging criticisms and suggest that there is still a great deal of mileage to be gained from the social model and that we weaken it at our peril. I will do this by briefly outlining the two alternative schemas which have emerged in the articulation of conflicting definitions of chronic illness, impairment and disability. I will then discuss six issues that, I suggest, go to

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the heart of the debate as far as external criticisms from medical sociologists are concerned. These ate: the issue of causality; the question of conceptual consistency; the role of language; the normalising tendencies contained in both schemas; the problem of experience; and finally, the politicisation of the definitional process. Having identified the issues at stake externally, I will discuss a number of internal criticisms that have emerged from disabled people themselves around the place of impairment, the incorporation of other oppressions and the use and explanatory power of the social model of disability. While remaining sceptical about these criticisms, I will finally suggest that a start can be made towards resolving some of them by focusing on what disabled people would call impairment and medical sociologists would call chronic illness.

THE PROBLEM OF DEFINITIONS Since the 1960s there have been various attempts to provide and develop a conceptual schema to describe and explain the complex relationships between illness, impairment, disability and handicap. This has led to the adoption of the International Classification of Impairments, Disabilities and Handicaps (ICIDH) by the World Health Organisation (WHO) (Wood, 1980) which has been used as the basis for two national studies of disability in Britain (Harris, 1971; Martin, Meltzer and Elliot, 1988). Not everyone has accepted the validity ofthis schema nor the assumptions underpinning it. Disabled people's organisations themselves have been in the forefront of the rejection of the schema itself (Driedger, 1988), others have rejected the assumptions which underpin it (Oliver, 1990) and the adequacy of it as a basis for empirical work has also been questioned (Abberley, 1993). This is not the place to discuss these issues in detail; rather I intend to look at some of the dimensions of the debate that is currently taking place. In order to facilitate this, I reproduce the two alternative schemas below for those who are not familiar with either or both: The WHO International Classification of Impairments, Disabilities and Handicaps: 'IMPAIRMENT: In the context of health experience, an impairment is any loss or abnormality of psychological, physiological, or anatomical structure or function ...

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DISABILITY: In the context of health experience, a disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being ... HANDICAP: In the context of health experience, a handicap is a disadvantage for a given individual, resulting from an impairment or a disability, that limits or prevents the fulfilment of a role that is normal (depending on age, sex, social and cultural factors) for that individual' (Wood, 1980, pp 27 -29).

The Disabled People's International (DPI) definition: 'IMPAIRMENT: is the functional limitation within the individual caused by physical, mental or sensory impairment. DISABILITY: is the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers' (DPI, 1982).

THE ISSUE OF CAUSALITY The search for causality has been a major feature of both the scientific and the social· scientific enterprise. What is at stake for the disability schemas described above is how to explain negative social experiences and the inferior conditions under which disabled people live out their lives. For those committed to the WHO schema, what they call chronic illness is causally related to the disadvantages disabled people experience. For those committed to the DPI schema however, there is no such causal link; for them disability is wholly and exclusively social. Hence each side accuses the other of being incorrect in causal terms.

Causality in the two schemas WHO Model

DPIModel Impairment

Disability

Handicap

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These schemas appear to be incompatible and have led one medical sociologist critically to suggest: 'Sometimes, in seeking to reject the reductionism of the medical model and its institutional contexts, proponents of independent living have tended to discuss disablement as if it had nothing to do with the physical body' (Williams, 1991, p. 521).

Ironically that is precisely what the DPI definition insists, disablement is nothing to do with the body. It is a consequence of the failure of social organisation to take account of the differing needs of disabled people and remove the barriers they encounter. The schema does not, however, deny the reality of impairment nor that it is closely related to the physical body. Under this schema impairment is, in fact, nothing less than a description of the physical body. The appearance of incompatibility however, may be precisely that: appearance. It may well be that this debate is in reality, the result of terminological confusion; that real similarities exist between chronic illness and impairment and that there is much scope for collaboration between supporters of both schemas if this confusion can be sorted out.

THE QUESTION OF CONCEPTUAL CONSISTENCY This terminological confusion is not just a matter of agreeing to use the same words in the same way. It is also about understanding and appeared when a policy analyst attempted to relate her own experience to policy issues in the area of disability. 'I found myself puzzled by arguments that held that disability had nothing to do with illness or that belief in a need for some form of personal adaptation to impairment was essentially a form of false consciousness. I knew that disabled people argue that they should not be treated as if they were ill; but could see that many people who had impairments as a result of ongoing illness were also disabled. My unease increased as I watched my parents coming to terms with my mother's increasing impairments (and disability) related to arterial disease which left her tired and in almost continual pain. I could see that people can be disabled by their physical, economic and social environment but I could also see that people who became disabled (rather than being born with impairments) might have to renegotiate their sense of themselves both with themselves and with those closest to them' (Parker, 1993, p.2).

The DPI schema does not deny that some illnesses may have disabling consequences and many disabled people have illnesses at various points in

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their lives. Further, it may be entirely appropriate for doctors to treat illnesses of all kinds, though even here, the record of the medical profession is increasingly coming under critical scrutiny. Leaving this aside, however, doctors can have a role to play in the lives of disabled people: stabilising their initial condition, treating any illnesses which may arise and which may or may not be disability related. The conceptual issue underpinning this dimension of the debate, therefore, is about determining which aspects of disabled people's lives need medical or therapeutic interventions, which aspects require policy developments and which require political action. Failure to distinguish between these up to now has resulted in the medicalisation of disability and the colonisation of disabled peoples lives by a vast army of professionals when perhaps, political action (i.e. civil rights legislation) would be a more appropriate response.

THE ROLE OF LANGUAGE Despite recent attempts to denigrate those who believe in the importance of language in shaping reality, largely through criticisms of what has come to be called 'political correctness', few would argue that language is unimportant or disagree that attempts to eradicate terminology such as cripple, spastic, wobbler and mongol are anything other than a good thing. This role of language, however, is more complex than simply the removal of offensive words. There is greater concern over the way language is used to shape meanings and even create realities. For example, the language used in much medical discourse including medical sociology is replete with words and meanings which many disabled people find offensive or feel that it distorts their experiences. In particular the term chronic illness is for many people an unnecessarily negative term, and discussions of suffering in many studies have the effect of casting disabled people in the role of victim. The disabling effects of language is not something that is unique to disabled people. Other groups have faced similar struggles around language. Altman in his study of collective responses to AIDS points out: ' ... in particular the Denver Principles stressed the use of the term "PWA" as distinct from "victims" or "patients", and the need for representation at all levels of AIDS policy-making "to share their own experiences and knowledge" ' (Altman,

1994, p.59).

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The struggles around language are not merely semantic. A major bone of contention is the continued use of the term 'handicap' by the WHO schema. This is an anathema to many disabled people because of its connections to 'cap in hand' and the degrading role that charity and charitable institutions play in our lives.

THE NORMALISING TENDENCIES OF BOTH SCHEMAS Underpinning both schemas is the concept of normality and the assumption that disabled people want to achieve this normality. In the WHO schema it is normal social roles and in the DPI schema it is the normal life of the community. The problem with both of these is that increasingly the disability movement throughout the world is rejecting approaches based upon the restoration of normality and insisting on approaches based upon the celebration of difference. From rejections of the 'cure', through critiques of supposedly therapeutic interventions such as conductive education, cochlea implants and the like, and onto attempts to build a culture of disability based upon pride, the idea of normality is increasingly coming under attack. Ironically it is only the definition advanced by the Union of the Physically Impaired Against Segregation (UPIAS) that can accommodate the development of a politics of difference. While its definition of impairment is similar to that of DPI, its definition of disability is radically different: 'DISABILITY: the disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairments and thus excludes them from the mainstream of social activities' (UPIAS, 1976).

Again, this is not just a matter of semantics but a concerted attempt to reject the normalising society. That some organisations of disabled people have not fully succeeded cannot be explained only as a matter of dispute between different political positions within the disability movement but also as evidence of just how ingrained and deep-rooted the ideology of normality is within social consciousness more generally.

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THE PROBLEM OF EXPERIENCE Recently, a number of sociologists working in the general area of medical sociology and chronic illness have expressed concern over the growing importance of the 'social oppression theory' of disability, associated research methodologies, and their implications for doing research in the 'chronic illness and disability fields' (Bury, 1992). Whilst these writers feel the need to 'positively debate' these developments, the basis of their concern is similar to that expressed by Hammersley with respect to some aspects of feminist research, i.e. the tendency to 'privilege experience over sociological research methodology' (Hammersley, 1992). In short, this privileging of experience is perceived as a threat; firstly, to 'non-disabled' researchers doing disability research; secondly, to the traditional role of the sociologist giving 'voice to the voiceless' - in this case 'older' disabled people whose interests are said to be poorly served by 'social oppression theory'; and, thirdly, to the 'independence' of sociological activities within the 'medical sociology world'. As a social researcher, I have some sympathy for these concerns but the problem is that most social research has tended to privilege methodology above experience and, as a consequenc€, does not have a very good track record in faithfully documenting that experience; whether it be the black experience, the experience of women, the experience of disability and so on. Additionally, scientific social research has done little to improve the quality of life of disabled people. Finally, it is difficult to demonstrate that so called 'independent research' has had much effect on policy, legislation or social change (Oliver 1992).

THE POLITICISATION OF THE DEFINITIONAL PROCESS By now it should be clear that defining impairment or disability or illness or anything else for that matter is not simply a matter of language or science; it is also a matter of politics. Altman captures this in respect of the definitional battles surrounding AIDS: 'How AIDS was conceptualised was an essential tool in a sometimes very bitter struggle; was it to be understood as a primarily bio-medical problem, in which case its control should be under that of the medical establishment, or was it rather, as

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most community-based groups argued, a social and political issue, which required a much greater variety of expertise?' (Altman, 1994, p.26).

This battle is related to two political processes; exclusion and inclusion as far as disabled people and disability definitions are concerned. The ways in which disabled people have been systematically excluded from the definitional process has recently been described in one incident which captures the nature of this exclusion more generally. 'It is a hot summer day in London in the late 1980's. Gathered together in one of the capital's most venerable colleges is a large number of academics, researchers and representatives of research funding bodies. Their purpose? A symposium on researching disability comprising presentations on a variety of different methodological and other themes, given and chaired by a panel of experienced disability researchers. Those convening the seminar are proud that it will shine a spotlight on a usually neglected area of social science research. But some in the audience (and one or two others who have chosen not to attend) hold a different view. What credibility can such a seminar muster, they ask, when none of those chairing or presenting papers are themselves disabled? What does it say about current understanding of disability research issues that such an event has been allowed to go ahead in this form, when a symposium on researching gender issues given entirely by men, or race relations research given entirely by white people, would have been laughed out of court?' (Ward and Flynn, 1994, p.29).

It should be pointed out that this exclusion has been systematic and disabled people have not been properly consulted by organisations such as WHO and the Office of Population Censuses and Surveys who have been most heavily funded in Britain to undertake such work. Where claims that this is not the case have been made, the reality is that research organisations have demonstrated that they don't even understand the difference between organisations for and organisations of disabled people and while they may have consulted the former, they have not consulted the latter. However, disabled people have begun to resist this situation by producing their own research based upon their own definitions (Barnes, 1991; 1992), the British Council of Disabled People (BCODP) has established its own research sub-committee and in Canada disabled people have produced their own guidelines on what is acceptable and not acceptable research for disability organisations to be involved in (Woodhill, 1993). These initiatives have begun to have some impact on not only the research community but on Government as well. Altman discusses the role of people

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with AIDS (PWAs) in AIDS research and argues that it Is m everyone's interest to encourage such developments: ' .. CRI (Community Research Initiative) has proved that a community model of research, involving PWAs themselves in decision making, could run effective trials - partly because it was able to successfully access suitable patients and encourage them to participate - and could resolve the complex ethical questions of such research successfully' (Altman, 1994, p. 70).

At a recent meeting of disabled people from all over Europe, the group decided to reaffirm their own definition of disability and to spell out the implications of this for the WHO schema. 'A Disabled Person is an individual in their own right, placed in a disabling situation, brought about by environmental, economic and social barriers that the person, because of their impairment(s), cannot overcome in the same way as other citizens. These barriers are all too often reinforced by the marginal ising attitudes of society. It is up to society to eliminate, reduce or compensate for these barriers in order to enable each individual to enjoy full citizenship, respecting the rights and duties of each individual'. 'By supporting this resolution this meeting on human rights expresses its non-support for the current classification of impairment, disability and handicap operated by the World Health Organisation. We call upon the WHO to enter into a dialogue with disabled people's organisations to adopt a new definition in line with the above resolution' (DPI, 1994).

DEVELOPING A SOCIAL MODEL OF IMPAIRMENT? Whatever happens to this call for a dialogue between organisations of disabled people and the World Health Organisation, disabled people have begun their own internal dialogue around the social model of disability. It is to some of the dimensions of this dialogue that I now turn before considering some of the implications. A major criticism that some disabled people have made of the social model concerns the way it connects, or rather doesn't connect with the experience of impairment. French (1993), for example, argues that her visual impairment imposes some social restrictions which cannot be resolved by the application of the principles of social model. She cites as examples her inability to recognise people and read or emit non-verbal cues in social interactions.

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Clearly, most disabled people can come up with similar examples. As a wheelchair user when I go to parties I am more restricted than some other people from interacting with everyone else and what's more, it is difficult to see a solution - houses are usually crowded with people during parties and that makes circulation difficult for a wheelchair user. But other people may find circulation difficult as well but for other reasons; they may simply be shy. The point that I am making is that the social model is not an attempt to deal with the personal restrictions of impairment but the social barriers of disability as defined earlier by DPI and UPIAS. Other disabled people have criticised the social model for its assumed denial of 'the pain of impairment', both physical and psychological. In many ways some of these criticisms mirror those made from without although they are not beset by the same terminological confusion between illness and impairment. ' ... there is a tendency within the social model of disability to deny the experience of our own bodies, insisting that our physical differences and restrictions are entirely socially created. While environmental barriers and social attitudes are a crucial part of our experience of disability ~ and do indeed disable us ~ to suggest that this is all there is to it is to deny the personal experience of physical or intellectual restrictions, of illness, of the fear of dying' (Morris, 1991, p.1 0)

This denial of the pain of impairment has not, in reality been a denial at all. Rather it has been a pragmatic attempt to identify and address issues that can be changed through collective action rather than medical or other professional treatment. 'If a person's physical pain is the reason they are unhappy then there is nothing the disability movement can do about it. All that BCODP can do is facilitate the politicisation of people around these issues. Of course this politicisation is fairly difficult to make practical progress with - much easier to achieve antidiscrimination legislation than a total review of how society regards death and dying, I imagine. This might explain why these subjects haven't been made a priority, but their day will come' (Vasey, 1992, p.43).

These criticisms are taken further by Crow (1992) who argues that the way forward for the social model of disability is to fully integrate the experience of impairment with the experience of disability. However, up to now and for very important reasons, the social model has insisted that there is no causal relationship between impairment and disability. 'The achievement of the disability movement has been to break the link between our bodies and our social situation, and to focus on the real cause of disability, i.e. discrimination and prejudice. To mention biology, to admit pain, to confront our

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impairments, has been to risk the oppressors seizing on evidence that disability is "really" about physical limitation after all' (Shakespeare, 1992, p.40).

Finally the social model of disability is criticised because it was written (if it ever was?) by healthy wheelchair users. According to one recent commentator: 'The social model of disability appears to have been constructed for healthy quadriplegics. The social model avoids mention of pain, medication or ill-health' (Humphrey, 1994, p.66).

The social model of disability does indeed avoid mention of such things, not because it was written by healthy quadriplegics, but because pain, medication and ill-health properly belong within either the individual model of disability or the social model of impairment.

OTHER INTERNAL CRITICISMS OF THE SOCIAL MODEL OF DISABILITY A further internal criticism comes from other oppressed groups who feel that these other oppressions such as racism (Hill, 1994), sexism (Morris, 1991) and homophobia (Hearn, 1991) have not been incorporated into the social model. Again, it is certainly true that the social model of disability has not explicitly addressed the issue of multiple or simultaneous oppression but then such issues are only just beginning to be explored in respect of both impairment and disability (Begum, Hill and Stevens, 1994; Zarb and Oliver, 1993; Priestley, 1995). This dissatisfaction has been expressed not simply because the social model does not adequately reflect experience of oppression of all disabled people but also because it may 'oversimplify' some of the issues raised in Disability Equality Training (DET). 'For some time I have been dissatisfied with the oversimplified "social model" of disability we are obliged to use in Disability Equality Training and have read with interest the recent arguments re-introducing "impairment" into that model. 'Although the "social model" has for some time served us well as a way of directing attention away from the personal to the political, I feel now that the debate has been hampered by the rather rigid genealogy of disability thinking. My own literary, linguistic and therapeutic background led me to post-modernist thinkers such as Foucault, Derrida, Barthes and Lacan in an attempt to make sense of the personal and political aspects of the disability debate' (Cashling, 1993, pp.199-200).

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While it is undeniably true that some DET trainers may have used the social model in an over rigid way, those like myself who draw on Marxist rather than post-modernist thinking call this reification; that is, the elevation of a concept into a thing, a social construction into reality. And it remains to be seen whether post-modernist explanations of the oppression of disabled people as simply a manifestation of society's hatred of us, will take us as far as the social model of disability in challenging that oppression. Cashling suggests they might but I have my doubts. For me our oppression is ultimately due to our continued exclusion from the processes of production, and not because of society's hatred (real or imagined) of us. Such criticism, however, raises questions about the way the model is used, rather than the model itself. If we expect models to explain, rather than aid understanding, then they are bound to be found wanting. Many of those arguing for the incorporation of impairment have confused models and theories. I suggest that the continuing use and refinement of the social model of disability can contribute to rather than be a substitute for the development of an adequate social theory of disability. As both Abberley (1987) and myself (Oliver 1990) have argued, an adequate social theory of disability must contain a theory of impairment. A final criticism comes from one of the founding fathers of the social model, Vic Finkelstein, who is also critical of the adequacy of the social model's explanatory power. Recently he has questioned the ability of the social model to explain fully the social position of disabled people in modem society, and suggests that there are at least two variants: the social death model and the social barriers model (Finkelstein, 1993). He then goes on to suggest that the administrative model is the only one which has sufficient scope to fully explain societal responses to disable people. 'In my view administrative approaches dominate all forms of helping services for disabled people in the UK, whether these are provided by statutory agencies or voluntary bodies, or demanded by pressure group organisations. The cure or care forms of intervention are administered within the rehabilitation and personal-care services respectively' (Finkelstein, 1993, p.37).

For me, the administrative model is similar to the position I took in trying to locate disability historically within the rise of capitalist society. 'As the conditions of capitalist production changed in the twentieth century, so the labour needs of capital shifted from a mass of unskilled workers to a more limited need of skilled ones. As a result of this, the Welfare State arose as a means of ensuring the supply of skill, and in order to "pacify" the ever increasing army of the

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unemployed, the under-employed and the unemployable' (Manning and Oliver, 1985, p.l02).

While I think Finkelstein and I are basically saying the same thing, for me it is important not to stretch the explanatory power of models further than they are able to go. For me the social model of disability is concerned with the personal and collective experiences of disabling social barriers and how its application might influence professional practice and shape political action. It is not a substitute for social theory, it is not an attempt to provide a materialist history of disability and it is not an explanation of the failure of welfare state in respect of services to disabled people.

THE SOCIAL MODEL OF DISABILITY IS ALIVE AND WELL These are some of the major internal debates going on around the social model. One of the things they have in common is their concern to somehow integrate impairment into the social model of disability. Personally I have no interest in such attempts because, as Vasey (1992) has already pointed out, the collectivising of experiences of impairment is a much more difficult task than collectivising the experience of disability. Our own history has taught us this in the way in which we have been classified and segregated by our impairments and the way in which single impairment organisations have failed to provide an adequate basis for collective self-organisation amongst disabled people in the past (Campbell and Oliver, 1996). Additionally there is still much mileage in the social model of disability. It has the power to transform consciousness in a way that a social model of impairment never will. David Hevey describes his own transformation: 'The second flash on this road to Damascus as a disabled person came when I encountered the disability movement. I had learnt to live with my private fear and to feel that I was the only one involved in this fight. I had internalised my oppression. As a working class son of Irish immigrants, I had experienced other struggles but, in retrospect, I evidently saw epilepsy as my hidden cross. I cannot explain how significantly all this was turned around when I came into contact with the notion of the social model of disability, rather than the medical model which I had hitherto lived with. Over a matter of months, my discomfort with this secret beast of burden called epilepsy, and my festering hatred at the silencing of myself as a disabled person, "because I didn't look it", completely changed. I think I went through an almost evangelical conversion as I realised that my disability was not, in fact, the epilepsy, but the toxic drugs with their denied side-effects; the medical regime with its blaming of the victim; the judgement through distance and silence

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of bus-stop crowds, bar-room crowds and dinner-table friends; the fear; and, not least, the employment problems. All this was the oppression, not the epileptic seizure at which I was hardly (consciously) present' (Hevey, 1992, pp.l-2).

While it has the power to transform consciousness in the way described above, its demise is surely premature. Finally, the hegemony of the individual model of disability may have begun to be challenged by the social model, but it has not yet replaced it. Hence, engaging in public criticism may not broaden and refine the social model; it may instead breathe new life in the individual model with all that means in terms of increasing medical and therapeutic interventions into areas of our lives where they do not belong. Despite my reservations about the project, the development of a social model of impairment to stand alongside a social model of disability appears inevitable. This being the case, those disabled people concerned may wish to develop a dialogue with medical sociologists working on the experience of chronic illness. In so doing, the issues identified earlier in this chapter may well help the dialogue to develop. In any case, our understandings of the experience of impairment may well be enhanced and the enterprise of medical sociology enriched.

CONCLUSIONS In this chapter I have looked at some of the definitional issues involved in impairment and disability. Subsequently, my argument has centred on three key points. Firstly, we must not assume that models in general and the social model of disability in particular can do everything; that it can explain disability in totality. It is not a social theory of disability and it cannot do the work of social theory. Secondly, because it cannot explain everything, we should neither seek to expose inadequacies, which are more a product of the way we use it, nor abandon it before its usefulness has been fully exploited. Finally, if a social model of impairment is to be developed, a dialogue between disabled people and medical sociologists may enrich the process.

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REFERENCES ABBERLEY, P. (1993) 'The Significance of the OPCS Disability Surveys', in Oliver, M. (ed.) Social Work: Disabled People and Disabling Environments, London: Jessica Kingsley Publishers. ALTMAN, D. (1994) Power and Community: Organisational and Community Responses to AIDS, London: Taylor and Francis. BARNES, C. (1991) Disabled People in Britain and Discrimination, London: Hurst & Co. BARNES, C. (1992) Disabling Imagery and the Media: An Exploration of the Principles for Media Representation of Disabled People, Derby: Ryburn Publishing and BCODP. BEGUM, N., HILL, M. and STEVENS, A. (eds.) (1994) Reflections: Views of black disabled people on their lives and community care, London: Central Council for Education and Training in Social Work. BURY, M. (1992) 'Medical Sociology and chronic illness: A Comment On The Panel Discussion', Medical Sociology News, 18, 1, pp 29-33. CAMPBELL, J. and OLIVER, M. (1996) Disability Politics in Britain: Understanding Our Past, Changing Our Future, London: Routledge. CASHLING, D. (1993) 'Cobblers and Song-birds: the language and imagery of disability', Disability, Handicap and Society, 8, 2, 199-206. DPI (1982) Proceedings of the First World Congress, Singapore: Disabled People's International. DPI (1994) 'Agreed Statement', at Human Rights Plenary Meeting in Support of European Day of Disabled Persons, London: Disabled People's International. DRIEDGER, D. (1989) The Last Civil Rights Movement, London: Hurst and Co. FINKELSTEIN, V. (1993) 'Disability: a social challenge or an administrative responsibility', in Swain, J. et al., (eds.) Disabling Barriers - Enabling Environments, London: Sage. FRENCH, S. (1993) 'Can you see the rainbow?', in Swain, J. et al., (eds.) Disabling Barriers- Enabling Environments, London: Sage. HAMMERSLEY, M. (1992) 'On Feminist Methodology', Sociology, 26, 2, 187206. HARRIS, A. (1971) Handicapped and Impaired in Britain, London: HMSO. HEARN, K. (1991) 'Disabled Lesbians and Gays Are Here to Stay', in Kaufman, T. and Lincoln, P. (eds.) High Risk Lives: Lesbian and Gay Politics After the Clause, Bridport: Prism Press. HEVEY, D. (1992) The Creatures Time Forgot: Photography and Disability Imagery, London: Routledge.

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HILL, M. (1994) 'Getting things right', Community Care 'Inside', 31 March, p 7. HUMPHREY, R. (1994) 'Thoughts on Disability Arts', Disability Arts Magazine, 4, 1, pp 66-67. , MANNING, N. and OLIVER, M. (1985) 'Madness, Epilepsy and Medjcine', in Manning, N. (ed.) Social Problems and Welfare Ideology, Aldershot: Gower. MARTIN, J., MELTZER, H. and ELLIOT, D. (1988) OPCS Surveys of Disability

in Great Britain: Report 1 - The prevalence of disability among adults, London: HMSO. MORRIS, J. (1991) Pride against Prejudice, London: Women's Press. OLIVER, M. (1990) The Politics of Disablement, Basingstoke: Macmillan and

St Martins Press. OLIVER, M. (1992) 'Changing the social relations of research production', Disability, Handicap and Society, 7, 2, pp 101-114. PARKER, G. (1993) With This Body: Caring and Disability in Marriage, Milton Keynes: Open University Press. PRIESTLEY, M. (1995) 'Commonality and Difference in the Movement: an association of Blind Asians in Leeds', Disability and Society, 10, 2, pp 15770. RIOUX, M. and BACH, M. (eds.) (1994) Disability Is Not Measles: New Research Paradigms in Disability, Ontario: Roeher Institute. SHAKESPEARE, T. (1992) 'A Response to Liz Crow', Coalition, September 1992, pp 40-42. SWAIN, J., FINKELSTEIN, V., FRENCH, S. and OLIVER, M. (eds.) (1993) Disabling Barriers- Enabling Environments, London: Sage. VASEY, S. (1992) 'A Response to Liz Crow', Coalition, September 1992, pp 42-44. WARD, L. and FLYNN, M. (1994) 'What Matters Most: Disability, Research and Empowerment', in Rioux, M. C. and Bach, M. (eds.) Disability Is Not Measles: New Research Paradigms in Disability, Ontario: Roeher Institute. WILLIAMS, G. (1991) 'Disablement and the Ideological Crisis in Health Care', Social Science and Medicine, 33, 4, pp. 517-524. WOOD, P. (1980) International Classification of Impairments, Disabilities and Handicaps, Geneva: World Health Organisation. WOODHILL, G. (1993) Independent Living and Participation in Research, Toronto: Centre for Independent Living in Toronto (CILT). ZARB, G. and OLIVER, M. (1993) Ageing with a Disability: What do they expect after all these years?, London: University of Greenwich.

[2]

Philosophical Issues in the Definition and Social Response to Disability DAVID WASSERMAN

D

isability should be of interest to philosophers because it raises fundamental issues about the significance of variations in physical and mental functioning for human performance and well-being, for personal and social identity, and for justice in the allocation of resources and the design of the physical and social environment. Recent Anglo-American philosophy, in turn, should be of interest to disability scholars because of its close analysis of concepts critical to the conceptualization and social response to disability, such as health, normality, and disease; human action and well-being; and discrimination, justice, and equality. Yet there is tension in the relationship between philosophy and disability. To the extent that philosophers turn to disability in addressing more general questions about well-being or justice, they may be inclined to misrepresent or oversimplify disabilities for the sake of argument. The distortion need not be intentional; philosophers are hardly immune to the "myths, fears, and stereotypes" about disabilities that prevail in contemporary society. Disability advocates, for their part, may be inclined to treat philosophy as the handmaiden of policy and may be unduly suspicious of or impatient with any philosophical analysis not in the service of a reform agenda. Despite these cross-purposes, however, philosophers can bring much-needed clarification to many debates about disability classification and policy. Disability advocates, in turn, can help to educate philosophers about the functional and social significance of human variation and to disabuse them of familiar myths and stereotypes about impairment. In this chapter, I will begin by outlining several areas of philosophy that are relevant to the conceptualization and social response to disability. In some of these areas, the potential contribution of philosophy to disability policy has been widely recognized; in others, it has been largely ignored. I will focus on a subset of issues that highlights the tensions between two aspects of disability: as functional limitation or deficiency and as stigma or social marker. I will examine the meaning and the implications of the impairment classification, the causal role of impairments in personal and social limitations, and the significance of impairments for wellbeing. I will not attempt to resolve these issues but merely outline the debate over them and suggestthat their resolution does not have the implications for social policy that some disability advocates fear. AliTHOR'S NOTE: I am grateful to Ron Amundson, Jerome Bickenbach, Robert Wachbroit, and Gary Albrecht for their comments on earlier drafts of this chapter.

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I will then turn to political philosophy, where the tension between the two aspects of disability has been most explicit and most acute. Distributive-justice approaches to disability focus on deficits in capacity and performance. Antidiscrimination approaches to disability focus on stigmatization and exclusion. I will examine the potential of each approach standing alone to provide an adequate foundation for disability policy and the prospects for integrating the two. Three terminological matters: I will follow the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) (World Health Organization 1980) in speaking of "impairments" as biomedically defined conditions, but I will depart from it in using" disabilities" to cover both the activity limitations and participation restrictions associated with impairments. I will have little to say about the necessity or utility of drawing a line between activity and participation, except to discuss one way of drawing that line that is not embodied in the ICIDH: between basic and nonbasic actions. I may also depart from the ICIDH on occasion in speaking of the limitations of "basic" actions, such as the inability to raise one's arm or wiggle one's ears, as impairments rather then activity limitations, blurring the tripartite classification scheme on the other end as well. My theoretical commitments are less ambiguous on another matter. I generally use the term people with impairments rather than people with disabilities, which is the term that prevails in the American legal context. While the latter term may be perfectly appropriate in that context, I want to use a term that identifies people with biomedically defined conditions without making any assumptions about their degree of limitation, well-being, or fair treatment. For some who adopt a social or minority group model of disability or who see the impairment classification as form of stigmatization, my usage may seem naive or question begging. On their view, disability is either conceptually prior to or entirely separate from impairment. I disagree and believe that it is analytically appropriate and useful to start with impairments. Finally, I will frequently contrast "mainstream philosophers" and "disability advocates." There is a small, growing, and welcomed overlap between the two groups: philosophers trained in the mainstream analytic tradition who also engage in disability research and advocacy, such as Ron Amundsen, Anita Silvers, Susan Wendell, and Jerome Bickenbach. In contrasting mainstream philosophers and disability advocates, then, I will often be contrasting not different individuals but (what I take to be) different perspectives or allegiances of the same individuals. My reason for referring to distinct groups is simply convenience, which I want to make clear from the outset.

OVERVIEW: HOW IS PHILOSOPHY RELEVANT TO DISABILITY POLICY? Several areas of philosophy have shared interests with and implications for disability studies. The philosophy of science analyzes the concepts of causation and explanation, concepts with broad relevance to claims about the contribution of biological, environmental, and social factors to disability. Philosophical accounts of the distinction between causes and conditions and of the relationship and ordering of different causal factors may be useful in evaluating medical, interactive, and social models of disability, with their apparently conflicting claims about the primary cause, or locus, of disability. Is it ever appropriate to attribute particular activity limitations or participation restrictions exclusively to physical or mental impairment or to the physical or social environment? Is it meaningful to assign proportions of an individual's limitation or restriction to his or her impairments and environment? Is it meaningful to even compare the contributions of his or her impairments and environment and judge one greater than the other? Within the philosophy of science, the philosophy of biology and medicine examines concepts such as health, disease, normality, fitness, and functioning, addressing issues abouHhe meaning, significance, and normative content of biological classifications and medical diagno-

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ses. Is the underlying notion of normality in terms of which impairments are identified biological, statistical, or normative? Is there a difference in this respect between physical and mental impairments? Are "universal" processes or states such as pain (perception), tooth decay, and aging to be understood as impairments? Is the distinction between normal and abnormal conditions a matter of degree or kind; is it arbitrary or conventional or grounded in scientific theory? The philosophy of action is concerned with the relationship between human agents and the external world. It examines the widespread tendency to see human actions as hierarchical, with more complex and contingent interventions in the world resting on a bedrock of "basic actions" that the agent can perform more or less independently of the world. Theories of basic action tend to treat impairments as having a presumptively negative impact on agents' efficacy and to underwrite a distinction between disability and handicap (or betWeen activities and participation, to use the language of the ICIDH-2 [World Health Organization 1997]). Critics of basic action tend to treat the agents' efficacy as more contingently related to their physical endowments. Epistemology, or the philosophy of knowledge and belief, bears on disability in its concern for the importance and reliability of sense perception and the relationship of different sensory modalities. Perennial philosophical questions about the extent to which our understanding of the world must be obtained from sensory experience or from the operation of various senses have obvious and important implications for the assessment of disabilities. For example, do people who can see have access to knowledge and understanding that people who cannot see cannot acquire or can acquire only derivatively? Do the senses of touch and sight necessarily yield consistent information about the world? Could an external world be perceived or constituted solely through sound? The philosophy of language examines the completeness and comparability of different systems of communication, an examination relevant to the appraisal of the sign languages and tactile communication employed by deaf and blind people. Aesthetic and moral philosophy examine questions of value that bear on the appraisal of differences in function and structure. Can we make meaningful comparisons about the beauty, richness, or complexity of the experience yielded by different senses or combinations of senses? Are various sensory and motor functions or combinations of functions necessary for or only contingently related to well-being? Do limitations in cognitive function have a more direct or less contingent relationship to well-being than differences in sensory and motor function? Is some minimal level of sensory or cognitive function necessary for humanity or personhood, for enjoying moral rights against various harms or for various goods, or for exercising certain moral powers, that is, to make promises? Finally, recent social and political philosophy has taken two different and potentially conflicting approaches to justice that focus on different aspects of disability. The dominant approach understands justice primarily in distributive terms, in terms of the pattern of individual resources, opportunities, or welfare across society. This approach tends to treat impairments as functional limitations that may generate various distributive claims. A second approach understands justice primarily in terms of social structures and processes, in terms of relationships of power, privilege, and status among social groups. This approach tends to treat impairments as the markers of oppressed social groups and sees justice for impairments in terms of the elimination of oppressive and discriminatory attitudes and practices. These competing approaches to justice and disability highlight a tension existing in several areas of philosophical inquiry outlined above-between approaching disabilities as functional limitations and as social markers. This difference in orientation yields a familiar but by no means necessary alignment of positions on questions related to disability. Thus, philosophers who approach impairments as functional limitations tend to see the impairment classification as, at least in theory, value neutral and objective. While denying that that classification is based on value judgments, they also tend to regard normal functions as presumptively desirable and many, though not all, impairments as disadvantageous in causing various limitations and in denying or restricting valuable experiences or opportunities. They tend to see these disadvantages as exacerbated, but not created, by neglect and exclusion. They tend to favor medical correction or monetary compensation as the presumptive social response to disability.

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In contrast, philosophers who focus on impairment as stigma tend to regard the impairment classification as value laden and subjective. Moreover, they tend to reject the values they see as informing that classification. They deny that the conditions classified as impairments cause disadvantage or limit human flourishing and that people with those conditions have lives that are any less rich, complex, or satisfying than those classified as normal. They tend to regard the appropriate social response to disability as the transformation of the basic cultural, political, and economic structures of society or, more modestly, as the elimination of discriminatory attitudes and practices and their pervasive structural manifestations. They acknowledge that these changes may well affect the distribution of resources and the comparative advantage of individuals with impairments, but they do not have that as their primary purpose. This alignment of positions, however, is unnecessary. It oversimplifies the complex relationship between the conceptualization of and social response to disability. As I will argue in the following sections, the understanding of impairments as sources of functional limitation is fully compatible with the recognition of impairment as stigma and with the endorsement of environmental reconstruction and social reform as the primary responses to disability. The claim that the impairment classification is value neutral may be adduced to argue that biological normality has only a contingent relationship to human flourishing and that the disadvantages associated with disability arise largely because social practices are tailored to normal human functioning. The claim that certain impairments preclude valuable experiences does not mean that they thereby make life any less rich or valuable overall; it may rather support the conclusion that there is an indefinite variety of ways in which human lives can flourish. A focus on the functional significance of impairments is compatible with understanding disability as a poor fit between the individual and his or her environment, such as an obsolete skill or membership in a very small linguistic or cultural minority. This view lends support to environmental modification over medical correction or monetary compensation as the presumptive response to disability.

WHAT DOES IT MEAN TO CLASSIFY A PHYSICAL OR MENTAL CONDITION AS AN IMPAIRMENT? It is widely agreed that "physical or mental impairment" is a biomedical classification-one made by doctors or other health professionals. Yet there is considerable disagreement about what that classification means. This disagreement is part of a wider debate about the meaning of health-whether it simply is the absence of disease, injury, or impairment and whether disease, injury, and impairment are distinct categories, appropriately grouped together as adverse health states. 1 I will focus on the question of whether the classification of a physical or mental condition as an "impairment" is value free or value laden. Is one claiming or assuming that a condition is at least presumptively undesirable by classifying it, or is one making a scientific judgment that, standing alone, has no normative implications? I will not discuss the questions of how "thick" a notion health is or how to distinguish disease from injury from impairment, although both questions are closely related to the one on which I focus. If the notions of impairment and disease are value neutral, it may be tempting to deny that health consists of nothing but their absence. If health is merely the absence of disease or impairment, it may be tempting to deny that those notions are value neutral. As I mentioned earlier, some philosophers and disability advocates have tended to assume that the impairment classification is value laden and to question the values they see as underlying it. Their claim is not merely that the actual classification of impairments at any given time and place will reflect the influence of prevailing social norms and values but that those norms and values are integral to the classification, not sources of error or bias. Some who attack the medical model of disability suggest that conditions classified as impairments are mere differences, akin to skin and hair color, stigmatized because they are uncommon or unfamiliar. A

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more modest and perhaps more widespread claim is that to judge a structure or function "impaired" is to hold it up against some moral or aesthetic ideal. About health and related concepts, Tristram Engelhardt (1986), one of the leading "normativists," said, To see a phenomenon as a disease, deformity, or disability is to see something wrong with it. Diseases, illnesses, and disfigurements are experienced as failures to achieve an expected state, a state held to be proper to the person afflicted. (P. 165) The normativist need not endorse or reject the values underlying the impairment classification; his or her claim is merely that that classification is not a strictly scientific matter and that it involves the fallible and controversial applications of moral and aesthetic ideals to human variation. The principal alternative to this view maintains that the classification of disease and impairment is descriptive and scientific, that it is not based on, even though it may be distorted by, moral or aesthetic values. Thus, Christopher Boorse (1977), the leading exponent of this view, argues that the diagnosis. of disease or impairment is a strictly biological judgment: that some part or system of the organism is not performing its normal or species-typical function with at least statistically typical efficiency. Boorse understands the species-typical function of a part or system to be its ultimate contribution to certain goals at the apex of the [biological] hierarchy.... The function of the heart is to pump blood rather than produce heart sounds, and the function of the kidney is to eliminate wastes rather than to keep the bladder full. It is the former effects, not the latter, that contribute to the organism's highest-level goals.... I suggest that those functions are, specifically, contributions to individual survival and reproduction. (P. 556) 2 Other philosophers of science have disputed Boorse's assumption that species-typical levels can be identified for most functions. According to Alexander Rosenberg (1986), for example, Modern biology suggests that variation of many endowment is not a matter of normality and disturbances from it, but of the random distribution of relatively discrete traits ... contemporary biological theory does not identify the average as the normal or natural level. There is no such thing. (Pp. 5-6) Somewhat more cautiously, Ron Amundson (2000) maintains that "it is an open empirical question whether evolution results in the kind of functional uniformity that would license normality definitions" (p. 7). He finds grounds for skepticism in a variety of case studies from developmental biology and disability research, which suggests that functional adults can develop in an indefinitely large number of ways .... Development yields adults that function, but not adults that function identically. Functional diversity is a product of developmental plasticity. (P. 9) 3 These case studies certainly illustrate the loose connection between typical and successful functioning. The question is whether they can be generalized to challenge the very notion of biostatistical normality. Even if they can, it is unclear how they are relevant to other valueneutral accounts of biological normality that do not identify with the central tendency of a statistical distribution of functioning (e.g., Wachbroit 1994 ). I will not attempt to judge the merits of this dispute. My interest is rather in what it means for an account of biological normality to be value neutral and what, if anything, such neutrality implies about the appraisal of and social response to impairments. Boorse (1987) claims that his definition of disease or impairment, in terms of departures from species-typical functioning, "is value-neutral, or as value-neutral as biology itself" (p. 372).

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The determination that a condition is an impairment does not imply that it is undesirable or disadvantageous. As he observes, At least in some circumstances, a disease state may be preferable to normality: it is advantageous to have cowpox in a smallpox epidemic, rubella prior to pregnancy, myopia or flat feet during a military draft, or oviduct blockage if one wishes no more children .... [Moreover,] some normal conditions are far worse than some pathological conditions. For example, short stature, low intelligence and moderate ugliness are by most standards greater handicaps than athlete's foot or myopia, even if the latter last a lifetime. (Boorse 1987:369) In highlighting the extent to which environmental conditions and personal goals mediate the impact of impairment, Boorse's (1987) account appears fully compatible with an interactive model of disability. The extent to which a departure from species-typical functioning is disadvantageous to an individual depends on her or his environment and goals. Boorse's account makes no judgment about the moral importance of individual survival and reproduction, as opposed to other goals and projects. Rather, it invites an explicit resolution of the issues of value that, according to normative accounts, are implicitly resolved by the very act of classification. 4 Thus, for example, a Boorsean would probably uphold the classification of deafness as an impairment simply because the auditory systems of deaf people did not make a statistically average contribution to their individual survival and reproduction. Yet he would not thereby be committed to the proposition that deaf activists emphatically deny that it is undesirable or disadvantageous to lack hearing (see Lane 1992; Wasserman 1996). In places where sign language was widely used (or interpreters plentiful), where Deaf culture flourished, or where cacophonous sounds abounded, it might be desirable or advantageous to lack hearing. The resistance to value-neutral accounts by disability advocates may have less to do with their actual implications than with a concern that they lend scientific credibility to social bias. Even if doctors and other health professionals believe that they are making a value-neutral judgment in classifying physical and mental conditions as impairments, their aversion to or disapproval of those conditions may often influence their judgments. The sway of social norms is now obvious with respect to some conditions long classified as diseases or impairments, such as masturbation; it may be as great, though less obvious, for many conditions still classified as diseases or impairments. It does not follow, however, that the need to justify that classification in scientific, value-neutral terms serves to protect, rather than expose, those social biases. A related concern is that doctors are notorious for their embrace of individual survival (if not reproduction) as the overriding goal of medical practice. Even if the priority of that goal is not inherent to the impairment classification, those making the diagnosis often assume it. However, a nonnormative account does not support that assumption. Rather, by treating individual survival as only one goal among many, it requires that that assumption be independently justified. A final concern, however, closely related to the previous two is more difficult to dismiss. On a value-neutral account, a person correctly classified as impaired does have something objectively wrong, defective, or lacking, even if it is something she or her might be indifferent toward or, in some circumstances, welcome. For some disability advocates, this provides a strong foothold for erroneous attributions of responsibility: Thus, Amundson (2000) argues, Philosophers and medical practitioners have used the category [biological normality] to conclude that the disadvantages of disabled people result from their own abnormality; they have only themselves (and nature) to blame .... When an inaccessible environment causes the confinement of a wheelchair user, the abnormality of the wheelchair is identified as the cause of the confinement. The doctrine of biological normality ... the linkage of normality to opportunity ... and hence to quality of life ... rationalizes the assessment. The opportunity losses of abnormal people are theorized to be not only natural and obvious, but morally innocuous. (P. 29)

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Amundson may be correct that the doctrine of biological normality has been used to rationalize neglectful (or intrusive and demeaning) social responses to disability. But none of the linkages he describes are compelled by the acceptance of a value-neutral account of biological normality. That doctrine does not support the claim that the wheelchair user's abnormality is the cause of his confinement, let alone that he is responsible for his confinement or that his confinement is "morally innocuous." In the next section, I will discuss the difficulty of finding a principled basis for designating any factor as the cause of a limitation or disadvantage and suggest that causal attribution is more plausibly seen as grounded in, rather than as grounding, judgments of moral responsibility and political obligation.

WHAT DOES IT MEAN TO CLAIM THAT AN IMPAIRMENT IS THE CAUSE OR A CAUSE OF THE PERSONAL AND SOCIAL LIMITATIONS WITH WHICH IT IS ASSOCIATED? There is a broad consensus among scholars writing about disabilities that the limitations associated with impairment are a joint product of biological features, environmental factors, and personal goals. As Amundson (1992) explains in a representative passage, A person with a disability [impairment] is handicapped only with respect to a particular environment and a particular goal. This is because the structure of the environment determines which goals are accessible to people with certain disabilities. Blind people are handicapped with respect to access to information because so much information in the present social environment is stored only in visually accessible form. Wheelchair users are handicapped with respect to travel because so little public transportation is accessible to wheelchairs. (P. 110) The recognition that impairment alone does not cause limitations in personal activity and social participation is central to the tripartite classification scheme of the International Classification ofImpairments, Disabilities, and Handicaps (ICIDH). The revised version (ICIDH-2) explicitly assigns a causal role to environmental and social factors in producing both disabilities (referred to in the ICIDH-2 as personal activity limitations) and handicaps (referred to in the ICIDH-2 as social participation restrictions). Although there are several competing schemes for classifying the effects associated with impairments of biological function, they all take an interactive approach to disability, recognizing environmental and social as well as biological contributions. The existence of a plurality of causal factors for any personal or social limitation raises the question of what it means to claim that a particular factor is the cause of an outcome or is a cause rather than a mere condition of its occurrence. As Robert Wachbroit (200 1) notes, philosophers have made various proposals for distinguishing causes from mere conditions: Some have claimed that causes are factors that we can control or manipulate, whereas conditions are factors beyond our control. Thus, the blow from the bat swing caused the baseball to land in the bleachers; gravity was a (background) condition. Others have identified causes as the unusual or salient factors. Thus, the driver being drunk caused the accident last night; that the road was also dark was a (background) condition. Still others have identified causes as those factors that address the interests we may have in the inquiry. Thus, what the road engineer regards as the cause of a car accident (the banking of the turn) might be different from what the automotive engineer regards as the cause of the accident (the way the power is distributed on each of the car wheels). (Pp. 69-70) Wachbroit (200 1) argues that the distinction between causes and conditions can be regarded as subjective, "in the sense of [depending] upon what we find salient or what interests motivate

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the inquiry rather than objective features of the world" (p. 70). Whether the impairment classification is subjective or value laden, the attribution of personal or social limitations to impairments is likely to be. One reason why impairments are often seen as the causes of the limitations associated with them is their salience. If a wheelchair user cannot get up a flight of stairs, we tend to attribute his or her failure to lack of leg movement rather than to the stairs. If a person with standard limb function cannot get up a sheer concrete wall, we tend to attribute his or her failure to the wall rather than to his or her lack of suction-cupped feet. The absence of standard leg mo~ement is salient; the absence of suction-cupped feet is not, but there is no scientific or neutral basis for making an exclusive causal attribution in either case. , Similarly, the background features of the environment are unlikely to figure in a causal account because they are, as Harlan Hahn (1999) observes, taken for granted. Although gravity contributes to the limitations experienced by would-be stair and wall climbers alike, it would rarely be cited as the cause of their limitations, just because of its pervasiveness. Again, however, there is no scientific warrant for its omission, just a pragmatic or psychological explanation. In light of the general recognition that disability results from the interaction of a variety of factors and that the selection of a given factor as the cause is subjective or context dependent, why should there be controversy over the causal role of biological and social factors in disability? In part, the controversy reflects conflicting intuitions about how much each type of factor contributes. The claim that disabilities are naturally or socially caused may be taken to express (somewhat hyperbolically) the claim that one kind of factor predominates. If the lack of standard limb function is more likely to be regarded as the cause of a mobility limitation than the lack of suction-cupped feet, it is not only because the former is more salient but also because, in a wider range of environments, the former is believed to be associated with greater mobility limitations. Such intuitions, however, are notoriously difficult to make more precise. This is illustrated by the somewhat analogous attempt to apportion the causal contributions of genetic and environmental factors to various mental and behavioral traits in an analysis of variance (Sober 2001; Wachbroit 2001). Without a generally accepted way of enumerating environments or of measuring the distance between them, assigning causal shares to biological and social causes is virtually meaningless. Yet the stubborn conviction that biological or social factors predominate in the creation of disability is rarely based on a canvass of all possible environments, even an incomplete or selective one. Rather, the judgment that one type of factor is the real or predominant one reflects the tacit choice of a baseline environment for making causal attributions. For many mainstream political philosophers, that baseline is a "state of nature" in which no one has the advantages of technology or social cooperation; for some disability advocates, it is a state in which people with impairments have unlimited access to existing and emerging technology. Those who adopt the first baseline regard any limitation that would arise in a state of nature as caused (predominantly) by natural or biological factors; those who adopt the second baseline regard any technologically surmountable limitation as caused (predominantly) by social factors. The selection of either baseline is clearly value laden, and the resulting divergence in causal attributions is more likely to reflect moral than empirical disagreement. Thus, the adoption of the second baseline is likely to reflect the conviction that people with impairments should enjoy unlimited access to adaptive technology, a conviction that singles out limitations in access to such technology as the cause of disability. The adoption of the first, state-of-nature baseline is based on a view of organized society as a contract among self-interested people who bargain or deliberate in light of their default position-how they would fare in the absence of a cooperative scheme. There are a variety of contractarian theories, but almost all share the assumption that a society has a greater obligation to avoid creating or exacerbating differences among its members than to eliminate differences that exist in a precontractual setting. A society's most stringent obligation is to leave its members no worse off, in comparative or absolute terms, than they would be in a state of nature; its obligation to make them better off is more qualified or contingent.

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The moral convictions that underlie these opposing baselines can be criticized on moral grounds-that they demand too much or too little of us and that they embrace a conception of society that is too encompassing or too atomistic. I will turn to these concerns in the final section, on disability and justice. Here, I want to consider a threshold difficulty: that both these baselines provide a shaky foundation for causal attribution because they are ambiguous or indeterminate. I will focus on the state-of-nature baseline because it is adopted more widely and uncritically in making causal attributions. 5 The interactive nature of disability makes it difficult, if not impossible, to assess how individuals would fare in the absence of a scheme of social cooperation. Human beings are social animals and relentless artificers; a state in which people lived without frequent contact and cooperation, or in which they did not modify their environment to accommodate their needs and limitations, would be a highly unnatural one. An indefinite variety of informal arrangements might exist or develop in the absence of organized civil and political society. People with impairments might fare very differently under those different arrangements, and there is no obvious basis for deciding which to regard as "the state of nature." The problem with a state-of-nature baseline is not merely that there is an indefinite number of alternatives to the present society or to any organized society. It is also that many of the disadvantages people experience in a given society must be understood in terms of the framework of advantages that society creates. It may not make sense to ask if they would have experienced those disadvantages outside of that framework, in a state of nature. The difficulties of abstracting away from a specific social order, or any social order, in making causal attributions are readily apparent in Thomas Pogge's (1989) attempt to distinguish natural and social disadvantages in the service of a theory of justice that regards society as having stronger obligations to the latter than to the former. Pogge asserts that "human life is exposed to a wide range of natural contingencies, such as genetic handicaps, illnesses, accidents, and other misfortunes not socially induced" (p. 45). He views the distribution of social goods as "superimposed upon [the distribution] of natural goods and ills" (p. 46). Although a person's genome can, at least until the advent of routine genetic therapy, be reasonably regarded as a natural contingency (although social policies and practices pervasively affect what genetic features get reproduced), the extent to which a given genetic feature is a "handicap" or "misfortune" may be due, to a considerable extent, to environmental factors that are "socially induced." Pogge (1989) recognizes that diseases and impairments themselves will sometimes be "socially produced, that is, due to the interactions among participants in the social system." He includes pollution, crimes, and traffic accidents as conditions whose incidence is affected by political decisions (Pogge 1989: 190-91). He appears to regard these cases of social causation as marginal, rather than central, threats to the distinction that he wants to draw. In fact, as recent studies of influenza, hepatitis, and AIDS suggest, virtually all contagious diseases owe their epidemic character, and many owe their particular biological form, to various features of organized social life, especially agriculture and trade. The contribution of organized social life is even more obvious with respect to most types of adventitious injury. Social arrangements contribute not only to the incidence of various types of biological impairments but, more pervasively and more important for our purposes, to the impact of those impairments on the lives of those who possess them-from the impact of literacy on dyslexia to the impact of the telephone on deafness. 6 If it is difficult to attribute the production of the underlying impairment to a natural or social cause, it will be even more difficult to make such an attribution with respect to the personal and social limitations associated with impairments. The difficulty with a state-of-nature baseline is not just a matter of uncertainty or indeterminacy about the conditions that would prevail in such a state. Even if we could, for example, extrapolate from the mortality statistics of less developed nations, showing dramatically lower life expectancies for people who are blind or paraplegic in an attempt to conclude that people with those conditions would generally have fared poorly in certain parts of the world in the absence of civil and political society, this gives us a very tenuous basis for attributing their present disadvantages to "nature." Thus, imagine a technologically sophisticated society built in an inhospi-

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table environment, where precivillife for blind or paraplegic people can be presumed to have been nasty, brutish, and short. Assume that this society made no provision for sightless communication or legless mobility but kept its blind and paraplegic members in physically comfortable institutions. Apart fJ;om the obvious injustice of this state of affairs, it would seem odd to attribute the disadvantages of those blind and paraplegic individuals to "nature" or to their natural endowment. What they lacked could only be characterized in terms of the activities and opportunities available to other members of the society and in terms of the social and political decisions that made those activities and opportunities unavailable to them. This is not to deny that the past can sometimes be a benchmark for making causal attributions. We may not be able to compare our present social arrangements with a hypothetical state of nature, but we can compare them to the state of society before the introduction of a new social practice or a new technology to assess whether those changes have exacerbated or alleviated various types of disadvantage. The introduction of the telephone caused much business and social communication to shift to a medium to which deaf people had no access. In addition, icon-based computer software poses a similar threat to the blind, for whom it is considerably harder to access than the DOS software it replaced. Such ante/post comparisons provide a basis for attributing the increased exclusion of people with impairments to changes in technology and social practice, but not for attributing their disadvantages generally to natural or social causes. One alternative to the state of nature as a baseline for causal attribution would be a state of "maximum feasible adaptation." Such a state would allow people with impairments to enjoy the benefit of all technologically possible measures to adapt the environment to their needs and goals. This baseline has not, to my knowledge, been clearly articulated, but it appears to be implied by the claims of some disability advocates to the effect that any barrier that could be removed by human technology, at any cost, is socially constructed rather than natural. Thus, the Union of the Physically Impaired against Segregation (UPIAS) declares that "in our view, it is society which disables physically impaired people" (quoted in Oliver 1996:22). The apparent denial of any causal role to biological factors seems to reflect both a very strong view of entitlement and a very strong technological optimism. Whether it is a morally more appropriate baseline than a "state of nature" is not the issue. In a world of infinite need and limited resources, it is an equally ambiguous or indeterminate one. It is notoriously difficult to assess the limits of technological possibility. Investment in technology yields unpredictable results, and a greater investment at an earlier time might have made possible enhancements in mobility and sensation that now seem fanciful. 7 It is not clear, however, that the claims of exclusive social causation made by some disability advocates should be taken at face value. Unlike some political philosophers, these advocates appear to recognize the morally and politically contentious character of causal attributions. Thus, the claim that disability is socially caused is seen by some proponents as a reaction against the opposing tendency to treat the disadvantages associated with disability as solely biological. As Tom Shakespeare explains, The achievement of the disability movement has been to break the link between our bodies and our social situation, and to focus on the real cause of disability, i.e., discrimination and prejudice. To mention biology, to admit pain, to confront our impairments, has been to risk the oppressors' seizing on evidence that disability is "really" about physical limitation after all. (Quoted in Oliver 1996:39) This passage suggests that the claim of exclusive social causation is a calculated overstatement, a corrective for the opposing and more damaging misrepresentation, but the analysis of causation also really involves the attribution of moral and political responsibility. These suggestions are made more explicit by Amundson (2000): Causation is a complicated thing. We pick out one antecedent event or condition and baptize it as the cause of a phenomenon. Different perspectives, different theoretically orien-

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tations, of different prejudices can lead to the baptism of different events as the cause. The Social model of disability never identifies the biomedical condition as the cause of that person's disadvantages. The causes are always identified in the environment and the social context. A critic might dismiss this approach as politically motivated and therefore not scientifically objective. But consider the alternative .... Philosophers and medical practitioners have used the category [biological normality] to conclude that the disadvantages of disabled people result from their own abnormality. They have only themselves (and nature) to blame. Is this assessment scientifically objective? (P. 29) The answer to Amundson's question, of course, is that neither assessment is scientifically objective. Instead of choosing the politically more congenial oversimplification, it would be preferable to reject the false dichotomy between biology and society as the cause of disability and to break the link between causation and responsibility-to hold society responsible for the alleviation of disadvantage, whether it can be said to have caused it or not. 8 Even if we had some basis for attributing the disadvantages associated with impairments to natural causes, it would hardly mean that the individuals were to blame or that their alleviation was not society's responsibility. As long as those disadvantages were not voluntarily chosen or risked, their source or locus will have no direct relevance on most plausible accounts of distributive justice. What will matter on those accounts is the cost to others of alleviating those disadvantages and the possible intrusiveness or indignity of particular forms of alleviation. Yet those considerations will have only a tenuous relationship with the attribution of those disadvantages to natural or social causes. There may be good reasons for favoring one kind of intervention over the other, particularly for modifying the environment rather than the individual (although the distinction between the two will not always be clear). It may be more respectful, dignified, or effective. But the fact that a disadvantage can be attributed to natural causes hardly means that it is not amenable to environmental modification.

WHAT, IF ANYTHING, IS BAD ABOUT IMPAIRMENTS? DO IMPAIRMENTS DETRACT FROM WELL-BEING? Philosophers, as we have seen, disagree about whether the classification of a physical or mental condition as an impairment implies a judgment that it is undesirable and about the extent to which impairments can be said to cause the disadvantages associated with them. In discussing these issues, I have deferred, or sidestepped, the obvious and important issues of what makes a physical or mental feature undesirable and what counts as a disadvantage. The two sets of issues are connected in the following way: the more general or abstract the description of a desirable state or condition, the more tenuous or limited the causal role of impairment appears to be. 9 Thus, various neuromuscular impairments appear to affect the ability to move one's limbs more directly than they affect the ability to get around. Yet even the ability to move one's limbs is environmentally mediated. On Jupiter, none of us could move our legs very well or far without assistive devices; on Earth, a person with a neuromuscular impairment could move his or her legs with the right assistive device. As I argued in the last section, it is difficult to be more precise about the intuition that the causal role of impairments is more direct in the case of some actions or states than in others. Certain impairments may contribute definitionally to the absence of certain activities (e.g., the absence of limbs to voluntary arm or leg movements}. But even if the connection is not a matter of definition, there may be no known or achievable environment in which a person with a given anatomical or physiological impairment could engage in particular action. It is certainly worth asking what loss of value he or she would thereby experience. And even when the connection is more contingent than this, it makes sense to ask what, if anything, is desirable or valuable about the various personal and social activities that impairments play some role in limiting.

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Philosophers have addressed such questions at length, though rarely under the rubric of disability. They have typically debated the more general questions about what makes a life go well, how or whether we can measure well-being and compare the well-being of different individuals, and whether certain forms of well-being matter more for certain purposes, such as political justice (Pogge 1999). These questions have been of special interest to philosophers who embrace some form of utilitarianism because they base the moral appraisal of actions on the evaluation of their (expected) outcomes. Yet many nonutilitarian philosophers have addressed these questions as well, especially those who adopt what Robert Nozick ( 1974) has called "end-state" conceptions of justice, in which the justice of a society or cooperative scheme depends to some extent on who ends up with what or in what condition. Historically, utilitarians understood well-being in terms of pleasure or happiness, without regard to the ways in which individuals achieved those states. Contemporary welfare economists have tended to adopt the less psychological, even more general, metric of preferencesatisfaction, without regard to the specific preferences chosen or the ways they are satisfied. Recent utilitarian philosophers have been drawn to constrained preference and desire-satisfaction accounts, which count only the preferences or desires that an individual would have with full or adequate information. Despite considerable differences among them, these accounts of wellbeing are all subjective in two senses. First, they define well-being in terms of psychological states, such as pleasure and desire, or psychological constructs, such as preferences. Second, they involve no judgment about the objective worth or value of different sources of pleasure or happiness or different objects of (informed) preference or desire. (Preference or desire accounts may be objective in another sense, in treating the satisfaction of preferences as a matter of fact, about which the preference holder can be mistaken. Informed preference and desire accounts may also be objective in imposing a high standard of knowledge or rationality on the preference formation process.) 10 More objective conceptions understand human well-being in terms of states or activities that are valuable "in themselves," whether or not anyone values them and whether or not they yield pleasure or happiness (although pleasure or happiness may be among the objectively valuable states, and well-being may require or even consist of taking pleasure in objectively valuable activities). What counts as valuable may be determined by ideals of human perfection; by the telos of humanity, revealed in theology, biology, or history; or by critical generalizations about what people have found valuable across times, places, and cultures. Objective accounts vary in the specificity with which they describe what is valuable for people and in the extent to which they emphasize valuable experiences or activities or the opportunity or capacity for such experiences or activities. Distinguishing subjective and objective accounts can be difficult since the constraints imposed on informed desire and belief accounts may bring them into rough correspondence with some objective ones, while objective accounts may rely heavily on what people actually desire or have desired in determining what is desirable or worthy. Moreover, some metrics of well-being appear to have an irreducibly hybrid character, such as opportunity for welfare (where "opportunity" is not based on the individual's own unconstrained probability judgments). On subjective conceptions of well-being, the impact of impairments is largely contingent. With the exception of impairments that are defined in terms of pain, unhappiness, or frustration or that involve limitations in the capacity to form coherent and stable preferences or desires, people with impairments can have as much pleasure, happiness, or satisfaction as people without them, and research on subjective well-being suggests that they often do. Indeed, some philosophers regard this as a reason for rejecting subjective accounts. They see the "happy cripple" as a reductio ad absurdum of any view that regards subjective states as the primary constituents of well-being (see Crocker 1995; Sen 1980). Not surprisingly, some disability scholars have been drawn to subjective metrics out of a concern that more objective accounts of well-being place it beyond the reach of people with impairments. It is not clear, however, that objective accounts must render the adverse judgments about impairments that are often made in specific arguments for those accounts.

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In examining how impairments fare on objective accounts of well-being, it will be useful to consider two influential but problematic distinctions: between intrinsic and instrumental value and between basic and nonbasic action. The first distinction is integral to the commonsense explanation of motivation and behavior. An activity may be valued instrumentally because of what it brings about, contributes to, or facilitates, or it may be valued intrinsically in itself. As intuitive as the distinction is, it can be hard to make-in part because there is deep disagreement about what is of ultimate value, in part because it is possible to parse many activities and states almost indefinitely into instrumentally valued means and intrinsically valued ends. For example, making money or friends can be seen as an end in itself or as a means to obtaining comfort and security. The interactive approach to disability encourages the parsing of activities in this manner. Thus, for example, much of what we value in talking, seeing, and walking is instrumental. We value them as ways of achieving communication with other people, reading, and moving from place to place-activities we regard as valuable in themselves. (Of course, we also recognize that these activities have instrumental value as well, e.g., for finding social partners and business opportunities.) None of these intrinsically valuable activities is precluded by deafness, blindness, or paraplegia; each can be achieved in alternative ways, by signing, reading Braille, or operating a wheelchair. This parsing of activities into instrumentally valued means and intrinsically valued ends is often informed by a hierarchical conception of action, in which simpler actions, more fully under our control, generate more complex actions, whose successful completion is more dependant on environmental factors. A general characterization of this hierarchy can be made with reference to a distinction philosophers have debated for decades. This is the distinction between basic actions, which a person does not do by doing anything else but "just does," and nonbasic or generated actions, which a person does by doing other actions, ultimately-on pain of regress-basic ones. Nonbasic actions can be generated causally. I make a breeze by waving my hand. Or they can be generated conventionally. I say goodbye by waving my hand, but I do not, or need not, do anything else to wave my hand (Dan to 1965; Goldman 1970). This is an intuitively appealing notion that seems helpful in clarifying how impairments are associated with the loss or absence of intrinsic value. As I suggested earlier, impairments may preclude basic actions definitionally; that is, whatever distinctive value there is in moving one's legs and eyes is precluded by impairments that involve the absence of the anatomical structure necessary for walking or seeing. Contingently, a neuromuscular impairment may prevent limb movement in all known environments. In either case, impairments can be said to deny the value that inheres in the basic actions they preclude. 11 Blindness does not preclude reading, but it does preclude seeing; deafness does not preclude communication, but it does preclude hearing; leg paralysis does not preclude mobility, but it does preclude walking and running. 12 Impairments may also be thought to be disadvantageous instrumentally, in limiting the stock of basic actions with which the individual can generate other, more valuable or advantageous actions. Some philosophers, however, doubt that we can give an adequate account of basic actions (e.g., Candlish 1984); others have argued that the actions, which,are truly basic, are mental events such as volitions (e.g., Hornsby 1980), which seem relatively' immune from or less directly vulnerable to (physical) impairments. And even those philosophers who accept a notion of basic action, under which many such actions are precluded by particular impairments, differ about the extent to which the precluded actions are a source of instrumental or intrinsic value. Several philosophers have argued that, at least in technologically advanced societies, most of the actions we value intrinsically are nonbasic and can be generated with widely varying sets of basic actions. Thus, Steven Edwards (1997) argues that basic actions are not interesting in their own right, but only in so far as they have an effect at the level of persons .... [But] a person may still be able to perform an extensive range of types of actions whether or not it is possible to perform a particular range of basic actions. (Pp. 602-3)

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Similarly, John Dupre (1998) maintains that most of the significant capacities of even fully able people are contextually determined . . . . Indeed, as far as mobility goes, it is surely the case that the financial resources necessary for access to cars, train tickets, or plane fares are far more determinative than are control over one's limbs. Similar remarks apply to sensory limitations of sight or hearing. In summary, though it is no doubt uncommon to lack the use of one's legs or the evidence of one's eyes, and although such deficits are hugely inconvenient to those who suffer from them, such deficits should not be seen as more than some among a range of characteristics that determine the vastly diverse range of capacities of different p,eople in different societies. (Pp. 230-31) Other philosophers regard these claims as too extreme. They do not deny the availability of alternate means of generating the kinds of activity people value; they merely claim that the instrumental importance of the standard set of basic actions can be underestimated. Even if there are alternative ways of generating less basic activities, they may be less effective, more expensive, or costlier in less tangible ways. Thus, Nordenfelt (1997) argues, There may be one type of basic action which is the dominant means for realizing a certain endstlite, and where we cannot see a good replacement. It is, admittedly, rarely the case that the favored basic action is absolutely necessary for achieving the desired end. The action may in practice, however, be necessary, given the way society works; or it may be the only way that can lead to the desired state in an expedient and efficient manner, given the way society works. (P. 617) Nordenfelt (1997) gives the example of the hand and finger movement involved in signing a wide range of documents. The comparative difficulty of executing a document without manually signing depends, of course, on existing social practices and technology, and a reduction in comparative difficulty may be claimed as a matter of justice. However, in assessing this claim of justice, it is also necessary to weigh the cost to others in modifying existing social practices and technology. It would surely count as instrumentally disadvantageous if those costs were very high "given the way society works." There is disagreement about the intrinsic and instrumental value of many standard sensory and motor functions and the actions closely associated with them-seeing, hearing, and walking. One threshold issue is whether the value in such functions and actions inheres in their exercise or performance or in the "internal" experience they yield. If the latter, then the value of those functions and actions themselves would be instrumental, and the loss of value from their impairment would be contingent. Examples such as Nozick's (1974) "experience machine," which faithfully simulates the experience of climbing a mountain and reaching its summit, suggest that what matters is not just the experience but attaining it through certain actions. This intuition, however, may be stronger for experiences that are also achievements, such as mountain climbing, for which simulation seems to be a form of cheating. It is not clear that we would find a similar loss of intrinsic value in the simulation of more a passive experience, such as experiencing the programmed arousal of the acoustical centers of the brain to produce the sensations of listening to a symphony versus listening to a digital recording of that symphony-at least if the simulation were shaped by the actual symphony performance to the same extent as the digital recording. Yet it may not be clear whether a symphony could be simulated or how it could be judged to be successfully simulated for someone who was congenitally deaf. Also, it may not make sense to talk about the simulation of cognitive functions and activities, such as imaging, imagining, and reasoning, since it may be impossible to distinguish their simulation from their occurrence. Setting aside the issue of simulated experience, it is hard to deny that many standard sensory and motor functions or the activities closely associated with them have intrinsic value. But it is almost as hard to assess how the absence of that value affects overall well-being. One obvious

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source of intrinsic value for standard sensory functions and activities, for example, is aesthetic-their beauty, richness, and complexity. But we do not regard color blindness, tone deafness, or impairments of smell or taste as inimical to well-being, although they preclude vast ranges of rich aesthetic experience. We generally assume that people who have never had those sensory functions (as opposed to, say, an artist or food critic dependent on his or her daily exercise) can lead perfectly good lives without such admittedly valuable experiences. This suggests that we cannot infer from the fact that there is great intrinsic value in a basic action that those who cannot perform that action have lives with significantly less intrinsic value. As Silvers, Wasserman, and Mahowald (1998) argue, Things have intrinsic value when we esteem them for themselves or, more precisely, for the character of the direct experience of them. It might seem to follow, then, that the absence of intrinsically valuable experience might be deleterious, injurious, or disadvantageous. But this inference is incorrect. Indeed, missing one kind of experience can enhance the quality of the remaining kinds. (P. 89) Silvers et al. (1998) claim that once we distinguish the absence from the loss of valuable sensory and motor experiences, there is no reason to believe that the absence of intrinsically good experiences is intrinsically bad. They note that the value of sensory and motor experiences increases with the attention we are able to devote to them and that a smaller range of experience may permit greater concentration. Silvers et al. also observe that we do not make the assumption that unimpaired people who can, but do not, have particular sensory or motor experiences necessarily lead impoverished lives. It may be that arguments such as Silvers et al.'s (1998) take an overly narrow view of the intrinsic value to be found in certain sensory and motor functions. As Magee and Milligan (1995) argue, The practical usefulness of seeing plus its power to provide aesthetic pleasure come nowhere near to accounting for the awed value that sighted people place on it. There are several other large ingredients. One, of course, is the sheer avidity of the desire to see.... This has no parallel with the senses of hearing, taste, or smell; we are under no slavish compulsion to be hearing sounds all the time, or tasting tastes, or smelling smells. However, there might be a similarity with the fifth remaining sense, that of touch. (P. 105) Magee and Milligan (1995) go on to suggest a second "ingredient"-that seeing and touch link us to the world more directly and closely than do the other senses and that their loss involves a profound isolation from physical and social reality (Magee and Milligan 1995 :105-6). It is not clear, however, that we need both seeing and touch to avoid such isolation 13 or that any of the other senses has comparable importance. A more general claim about the relevance of impairment to well-being has been made by several recent philosophers. Martha Nussbaum (1990), for example, maintains that having some form of sense perception and mobility is necessary for humanity and that "being able to move from place to place" and "being able to use the five senses" are essential to human flourishing (Crocker 1995:170-80; Nussbaum 1990:219, 225). Nussbaum, however, does little to justify these claims. She views them as generalizations derived from and supported by "a wide variety of self-understandings of people in many times and places" (Crocker 1995:171; Nussbaum 1992). Our conception of human flourishing, she maintains, has evolved around the standard complement of human functions, and we cannot step outside of our collective experience to demand a freestanding justification. Yet without more specific argument about the role of specific functions in our relationship to the physical world or to other people, we have no way of resolving conflict about the importance of those functions or of addressing the charge that the consensus "of people in many times and places" reflects nothing more than widespread prejudice or error. To respond, for example, to the claim of deaf activists that people's lives can go as well without hearing as with it,

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Nussbaum could not merely assert what no one would deny-that there is great aesthetic value in hearing. Without claiming that hearing is essential for some broader social or intellectual good, a claim that would almost certainly be false, it is· unclear what Nussbaum could argue. More broadly, as Jerome Segal (1998) points out, we can hardly deny that some people flourish without many of the capabilities Nussbaum seems to regard as essential. The most successful lives of people lacking those capabilities appear to go as well as the most successful lives of people with a standard complement of sensory and motor functions. While a life could hardly go well without at least some of the capacities Nussbaum enumerates, we have no clear basis for establishing a minimum set. An alternative to the dogmatic enumeration of essential human goods is suggested by Sen's (1993, 1980) approach to capabilities as a metric of positive freedom. Instead of insisting that any particular function is necessary for well-being, Sen places a more abstract emphasis on positive freedom as a good in itself. This emphasis suggests that the greater the number of valuable functionings we have the capability to engage in, the better off we are, even if we do and can engage in only a limited number of them. If there is intrinsic value in the opportunity or positive freedom to do as many activities as possible, in as many different ways as possible, then impairments may be intrinsically undesirable in reducing our range of opportunity. But it is unclear why there should be greater intrinsic value in larger "capability sets," beyond some minimum needed to ensure a meaningful choice among different options. It may be wrong for the government to limit people's options on the basis of a parochial or contested view of human flourishing, but it is not necessarily bad for a person to face life with a narrower than average but still capacious set of options. An emphasis on positive freedom, like an emphasis on material goods, can become obsessive or fetishistic. The difficulties in finding an appropriate metric of well-being suggest that no single metric may be appropriate for all purposes. Several philosophers (e.g., Griffin 1993, 1986) have suggested that different conceptions of well-being are appropriate in different contexts. For example, it may be more appropriate to adopt a comprehensive, value-laden conception in assessing how one's own life is going, or would go, than to allocate resources based on relative disadvantage. Thomas Scanlon (1998) has contended that well-being is not the "master value" it is assumed to be by some philosophers who are primarily, bur not exclusively, consequentialists. He argues that from the first-person point of view, "the things that contribute to (one's own) well-being are obviously important, but the concept of well-being plays very little role in explaining why they are important" (p. 142). It is simply an "inclusive" concept encompassing many or most of the person's specific aims and concerns. From a third-person point of view, some but not all aspects of well-being matter. For instance, a parent or guardian will be concerned about specific ways in which things go well or badly for his or her charges, while a political society or cooperative scheme may be obliged to promote or equalize some aspects of well-being but not others. So perhaps we do not need a general answer to the question of how impairments affect well-being. What matters to the individual are his or her aims and special concerns; what matters to the society to which he or she belongs are those aspects of well-being that are a source of political obligation, and that may be quite distinct from what matters to the individual and his or her family or friends. In the next section, I will focus on the question of how impairments affect what we owe each other as a matter of justice.

HOW ARE IMPAIRMENTS RELEVANT TO SOCIAL AND POLITICAL JUSTICE? The question of whether or how much impairments reduce well-being has often been conducted in the shadow of the more general debate about how well-being is relevant to the allocation of resources and to the design of society. In denying that impairments reduce well-being,

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some disability advocates may be responding to the perceived consequences of conceding that they do reduce well-being. This is seen in the assignment of low priority to the lives of impaired people in choices among lives and the assignment of high priority to the often unwelcomed medical "correction" of impairments. Disagreements about the impact of impairments on various aspects well-being might be more tractable if they were not seen as having such questionable distributive implications. Nowhere are the implications of impairment for resource allocation starker or more controversial than in utilitarian accounts of health care decision making. In its classical form, utilitarianism assesses the value of lives by the pleasure, happiness, or satisfaction they contain and produce and judges decisions among lives by their impact on the sum of pleasure, happiness, or satisfaction in the world. Individuals matter only as bearers and producers of utility: The more utility they gain or produce from a resource, the stronger their claim to it. To the extent that impairments reduce utility, the preservation of the lives of people with disabilities has lower priority; to the extent that the correction of impairments increases utility, the medical treatment of people with impairments has higher priority. The classical utilitarian calculus provides apparently straightforward, if often unpalatable, answers to questions about creating and extending lives. If the birth of an impaired child increases overall utility, the child should be born, unless its "replacement" by a child without an impairment would increase utility even more (see, e.g., Kuhse and Singer 1985). If a hospital can save the life of two disabled people or one nondisabled person, but not both, it should save the nondisabled person if his or her life would be sufficiently longer, happier, or more productive (see Brock 1995, 1997; Daniels 1997; Murray 1996). Some utilitarians attempt to deny these implications by insisting that it is necessary to consider the full range of consequences-not only the length and quality ofthe lives immediately at stake but also the possibility of mistaken judgments about length and quality, as well as the distrust and demoralization that would result from the use of a utilitarian decision criterion. Other utilitarians, while not denying that all such consequences must be taken into account, are more inclined to challenge than accommodate popular sentiment. Among the latter, by far the most prominent and controversial is Peter Singer (1993), who has proposed that parents be allowed to let severely impaired newborns die. Singer's (1999) conviction is that "philosophy ought to question the basic assumptions of age" (p. 466), whether the assumption that only humans matter morally or the assumption that all humans matter to the same extent. Singer's challenge to the former has made him a champion to many in the animal rights movement, while his challenge to the latter has made him a nemesis to many in the disability rights movement. The consistency Singer claims for these positions may be superficial or foolish, but his vigorous advocacy has challenged opponents to articulate their own conceptions of equality more clearly. Utilitarianism is often thought to demean the lives of people with disabilities. Yet it gives equal weight to the utility of all persons and favors the interests of people with disabilities in any context where their relative disadvantage promises high marginal utility for interventions on their behalf. Unlike some of the egalitarian and "prioritarian" theories of justice I will discuss below, it does not treat people with impairment as special cases. It takes an equally calculating and instrumental view of all lives. Moreover, the interpersonal comparison and aggregation mandated by utilitarianism seem difficult to banish altogether from theories of justice since considerations of aggregate well-being exercise a powerful intuitive constraint on the reduction of inequality and the improvement of the position of the worst off. For political philosophers committed to equalizing rather than maximizing well-being, people with lower well-being generally have stronger claims to resources. To the extent that impairments reduce well-being, people with impairments have priority for both life-extending and life-enhancing resources. Philosophers with such egalitarian commitments have often assumed that physical impairments such as paraplegia and blindness dramatically reduce well-being because functions such as seeing and walking are critical for a wide variety of life plans. They have proposed a variety of special provisions to compensate for the absence of those functions, from a cash allowance approximating the insurance that people with impairments would have pur-

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chased against their deficits in hypothetical circumstances (Dworkin 1981) to an unlimited allowance to restore them to normal functioning (Daniels 1986, 1990). 14 Disability advocates have not been much happier with the high priority accorded by egalitarian approaches to people with impairments on the basis of their presumed disadvantage than with the low priority accorded them by utilitarian approaches on the basis of their presumed misery. The inappropriateness of standard egalitarian provisions for disability has led some disability advocates to regard egalitarian justice as part of the problem, not the solution. They have concluded that any theory of political justice that sees its mission as equalizing people or reducing inequality on some metric of well-being or advantage will inevitably demean those it regards as disadvantaged. In the remainder of this section, I will discuss three responses to these misgivings, suggested by three critiques of egalitarian theories of distributive justice. While these critiques have not, for the most part, been informed by the complaints of disability advocates, they reflect similar concerns. The first, friendliest critique is that egalitarian theories have set about equalizing the wrong thing, either external resources or subjective welfare. An individual's share of material resources is not the appropriate metric of advantage for purposes of political justice, nor is her or his happiness or satisfaction. People with impairments are poorly served by both metrics: Equality in individual resources takes no account of the disabling effect of the physical and social environment and tends to exaggerate the limitations of people with impairments, while equality in welfare ignores those limitations altogether. What is needed is a metric that takes into account differences in functioning by recognizing claims to environmental adaptation. The second, most hostile critique calls into question the very idea of justice as principally concerned with the distribution of resources or the well-being of individuals. Some philosophers have argued that distributive accounts make inappropriate provisions for disability because they fail to recognize the locus of injustice for people with impairments. In focusing on the symptoms of material disadvantage, distributive justice ignores the underlying structural causes: oppressive and exploitative economic, social, and political relations among groups. Disparities in material resources across social groups may be important evidence of oppression and exploitation, but they have no independent significance. In addition, heroic efforts to extend distributive justice beyond material resources to intangible, participatory, and collective goods are futile; they merely "reify" concerns that are properly understood as relational and procedural, in terms of oppression and domination, not maldistribution (Young 1990). 15 In its application to impairments, this approach focuses on their character as stigma rather than as causes of functional limitation. Impairments are of concern to justice not because of any direct or proximate effect they have on the performance or well-being of the impaired but because they are, like skin color or ancestry, the markers of an oppressed and subordinated social group. Justice for people with impairments requires the transformation of these relationships. Any change in the share of resources assigned to people in an oppressed group would be a by-product of that more fundamental change. A third critique attempts to steer a middle course between justice as equality in resources, welfare, opportunities, or capabilities and justice as the absence of oppression and domination in social structures and relationships. Justice must be understood primarily in social and political terms, as a matter of equal citizenship. On this approach, impairments are relevant to justice only to the extent that people with impairments are not treated as equal citizens, not in the more pervasive way they are to utilitarian and some egalitarian accounts. The philosophers who argue for a distinct notion of political equality claim or assume that such equality imposes a threshold that can be reached or exceeded by almost everyone in modern postindustrial societies. They claim that equality is not an elusive goal whose partial achievement must be balanced against other values and whose pursuit requires intrusive and insulting assessments of individual well-being. The next three subsections examine the adequacy of these competing approaches for disability policy. They consider

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1. whether distributive justice is broad or flexible enough to encompass environmental adaptation; 2. whether nondistributive approaches to justice have the resources to prescribe appropriate modifications in the physical and social environment, without recourse to distributive considerations; and 3. whether an account of justice, in terms of political equality, can successfully combine distributive and nondistributive considerations relevant to disability.

Can Distributive Justice Encompass Claims for Environmental Adaptation? In debates over the appropriate conception of well-being or comparative advantage for distributive justice, impairments are often presented as hard cases. Both the profound misery of the blind and the crippled and their unaccountable euphoria are invoked to criticize various metrics as demanding too much or too little for the disabled or ofthe able-bodied (Cohen 1989; Dworkin 1981; Sen 1980). The caricatured picture of impairments that informs these debates has led some philosophers and disability advocates to conclude that merely framing the issue of justice for people with impairments in distributive terms is to present them as defective and helpless (e.g., Silvers 1994). While this conclusion is understandable, it is too sweeping. The treatment of impairments as a problem of deficient natural endowment is not dictated by a distributive conception of justice; it arises in part from a failure to appreciate the interactive character of disability. An awareness of the myriad ways that individuals' environment and goals mediate the impact of their impairment on their well-being would surely reduce the temptation to assume that their misery was inconsolable, their euphoria unreasonable, or their needs inexhaustible (see, e.g., Albrecht and Devlieger 1999). Thus, the assumption that people with impairments invariably require a significantly larger bundle of resources to pursue their (reasonable) life plans reflects a failure to take into account the disabling effects of what Hahn (1999) has aptly described as the "taken-for-granted" environment and of the enabling effects of environmental adaptations. The question, however, is whether claims to greater environmental adaptation can be captured by a theory of distributive justice. Typically, such theories have sought to equalize or reduce inequalities in the resources possessed or controlled by individuals or their welfare, that is, their pleasure, happiness, or satisfaction. 16 It is difficult to express claims for environmental reconstruction in terms of either a resource or a welfare metric. Theories of justice that take resources as the metric of comparative advantage tend to take the environment for granted. The (hypothetical) division of resources into individual bundles takes place either within the present scheme of social cooperation and economic production or else in a state of nature that is assumed to evolve into a scheme such as the present one through transactions among the equally endowed participants. Giving people with impairments equal economic shares in a society constructed as our own, with a physical environment and social practices designed for people with standard endowments, might improve their material circumstances, but it would be likely to leave them at the margins of society. It is doubtful that any approach to justice based on the partition and allocation of external or material resources could give people with impairments an adequate say in the design of the physical and social environment to bring them into the mainstream of social activity and political decision making. In failing to provide an accommodating environment, a scheme of resource equality might, as disability advocates fear, legitimize the inferior status of people with impairments, as individuals disadvantaged by deficits in natural endowment, not in external resources. 17 A resource metric can only respond to these concerns with more of the same, giving

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people with impairments larger bundles of goods or special compensation for their inefficiency in converting those goods to their own purposes by a cash allowance or medical correction. Theories of justice that take welfare as the metric of comparative advantage do not require or encourage such special treatment for people with impairments. They either defer to the individual's own assessment of how she or he is doing or else base her or his status on some independent measure of her or his pleasure, happiness, or preference satisfaction. However, welfare approaches seem manifestly unsatisfactory as a basis for determining political obligations or what we owe each other as members ofthe same political community. It seems intuitively unfair that we should owe more to those who, because of extravagance or self-importance, would be miserable with less, or less to those who, because of self-denial or self-denigration, would be happy with very little. While the euphoria of a blind or paraplegic person should hardly be taken as a reductio ad absurdum of a welfare approach (that euphoria may be entirely warranted), it does suggest a stronger, more general objection to welfare metrics. Even if extreme misery or frustration is a concern of justice, what we owe each other is not some level of happiness or satisfaction but a reasonable means to lead a happy and satisfying life. Moreover, the assessment of individual welfare for distributive purposes would seem likely to be a particularly intrusive, demeaning, and unreliable process. An adequate theory of political obligation requires a more objective metric of human flourishing. Recent political philosophers have been keenly aware of the inadequacy of both resource and welfare metrics. They have proposed a variety of alternative metrics that assess well-being for purposes of distributive justice not, or not only, in terms of what the individual has or feels but also in terms of his or her opportunities, capacities, or activities in terms of opportunity for welfare (Arneson 1989, 1990), access to various kinds of advantage (Cohen 1989), or range of capabilities (Sen 1980; Nussbaum 1990). 18 These "midfare" metrics (Cohen's 1993 term) are more objective than welfare metrics in looking beyond the individual's feelings or preferences to assess her or his comparative advantage, but they are more individualized than resource metrics in looking at what a person can do with the resources at his or her disposal. Although they regard impairments as undesirable to the extent that they limit opportunity or access or preclude valuable activities, they also treat the physical and social environment as a source of disadvantage and underwrite claims to environmental modification. Perhaps the most comprehensive metric for assessing comparative advantage for purposes of political justice is offered by the capabilities approach of Sen and Nussbaum, discussed in the last section. Their approach does treat impairments as inherently undesirable in precluding valuable functions or capacities, such as seeing, hearing, or walking. But most of the capabilities regarded as essential or important bear a highly contingent, environmentally mediated relationship to impairments. Thus, for example, the capabilities approach abstracts from the physical differences between people with limb impairments and normal limb function to find a common claim to the means of moving about from place to place. Those means will often but not always be the same for both; they may be architectural, vehicular, mechanical, or prosthetic, or they may involve making places more accessible or making the individual more mobile. In some circumstances, it may well be more difficult or costly for people with limb impairments to achieve or maintain that capability, but the difference will not be a categorical one. In general, the capabilities approach and other midfare metrics allow the disadvantages of people with impairments to be seen as problems of environmental fit rather than deficient endowment. A recognition of the critical role played by the environment in creating and alleviating disability is found not only in the development of more flexible or comprehensive metrics of well-being but also in the analysis of social and technological changes that affect the participation of people with impairments. Several philosophers have observed that social decisions and policies about the deployment of new technology and the design of social rules and practices make impairments more or less disabling (Buchanan 1996; see also Silvers and Wasserman 1998; Wikler 1979). The introduction of the telephone and Windows software, the raising and lowering of competence standards for legal responsibilities and social activities, and the modification of requirements for earning a college degree or playing in a golf tournament have all had

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profound effects on the access and participation of people with various impairments. In each case, there appears to be a conflict between the inclusion of some and the satisfaction of others-a quintessential problem of distributive justice. A society could develop an indefinite number of cooperative schemes and social practices that would be more or less inclusionary, rewarding, and productive. No doubt some of the alleged trade-offs are avoidable, and others are exaggerated. However, there will inevitably be trade-offs, and an adequate theory of distributive justice is needed to resolve them on a principled basis. To provide such guidance, one must enlarge that subject matter of a theory of distributive justice without losing focus on individual outcomes. Although such a theory must be comparative, concerned with how the members of a society are faring relative to each other, it need not and often cannot be achieved through individual allocations; it may require changes in the structure and organization of society. 19 Such changes are required not only for people with impairments but also for people who belong to minority cultures, for people who possess obsolete skills, and, more broadly, for people who value goods that can be realized only in social institutions and practices. Thus, for example, similar issues of environmental modification arise in deciding how to accommodate atypical functions and minority languages; they arise for users of American Sign Language as well as for speakers of Spanish or Chinese. The fact that Spanishand Chinese-speaking children learn Standard English more easily than deaf children may be relevant to the way the issues are resolved, but it does not change their fundamental character. Assimilation may be possible for deaf as well as for Spanish and Chinese children through oralism or cochlear implants, and, to the extent that it is possible, it raises similar concerns about cultural survival and intergenerational estrangement. Impairments are merely some of the more significant and conspicuous variations that a just society must accommodate. The rejection of a distinction between natural/internal and social/external causes of disadvantage will, if anything, sharpen the conflicts over environmental accommodation because the claims of people with impairments cannot be accorded lower priority on the grounds that they concern naturally occurring disadvantages. 20 Yet if such claims cannot be treated as less urgent than those of able-bodied people, they will not necessarily prevail against conflicting claims. Environmental modifications can be very expensive, and modifications that serve people with one type of impairment may be useless or inconvenient for those with other impairments or for nonimpaired people. Thus, consider the issue of how to educate and support people with severe cognitive and developmental impairments. It is, of course, important to recognize that the classification of cognitive limitation may be driven by the economic demands of modern industrial and postindustrial societies and that the disadvantages associated with the levels and styles of mental functioning, classified as impairments, are largely due to the failure to accommodate atypical functioning in the design of educational institutions, the provision of caregiving services, and the structuring of jobs. However, we still need to decide how to redesign our educational, caregiving, and employment institutions to fairly accommodate people classified as cognitively and developmentally impaired. It would be naive to assume that the designs that best serve those individuals will best serve individuals with normal or superior cognitive functioning or will have no adverse impact on productivity, safety, wealth, or other values and concerns. More broadly, it is likely that we will have to choose between cooperative schemes that have higher average or total well-being on any metric, not based exclusively on material goods, and schemes that have smaller disparities in well-being. People with impairments have often been unfairly typecast to illustrate this conundrum, but a less distorted view of impairment would hardly eliminate it. Some philosophers have responded to the obvious difficulty of achieving equality on any adequate metric of well-being by arguing that equality needs to be balanced against other values, such as beneficence. Others have argued for giving priority to the worst off rather than attempting a general reduction in inequality (Parfit 1997). Just as egalitarian accounts must decide how much inequality to tolerate for the sake of other values, "prioritarian" accounts must decide how much priority to accord the worst off at the expense of such values. The moral uncertainty of these trade-offs is as daunting as the individualized assessment of well-being they require.

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Can Justice for People with Impairments Be Achieved by Eliminating Discrimination against Them or, More Broadly, by Eliminating Oppression and Subordination? The complexities of more comprehensive theories of distributive justice have a moral cost. They appear to diminish the urgency of the pursuit of justice by shifting its focus away from the elimination of great social evils--slavery, caste, political repression, child labor-to the pursuit of an elusive goal with debatable criteria. Much of the appeal of procedural or relational accounts of justice/1 which focus on such specific evils, is that they seem to capture the moral importance of justice better than the abstract assessment of outcome disparities. The strengths and limitations of a relational account of justice for disability policy, based on the elimination of oppressive attitudes, practices, and structures, are suggested by the antidiscrimination approach taken by the Americans with Disabilities Act of 1990. While that approach does not embody a complete relational theory of justice for people with impairments, it treats the Joens of injustice as the underlying attitudes of contempt and devaluation, as well as their pervasive structural and institutional manifestations. It relies on and extends the broad notion of discrimination that has evolved in American civil rights law over the past generation, treating impairments as the markers of an oppressed social group. The antidiscrimination approach identifies a core evil in the treatment of people with impairments and provides effective means of responding to it. Yet as a social policy for disability, it is, as I will conclude, radically incomplete.22 Several philosophers and legal scholars have argued that the core notion of discrimination that informs recent American civil rights law involves contempt or devaluation of individuals based on their membership in a social group (Wasserman 1998). For more than 30 years since the passage of the 1964 Civil Rights Act, this notion has been enlarged by legislation, judicial decisions, and legal commentary to cover not only deliberately unfavorable treatment based on hatred or contempt but also the long-term and institutional effects of intentional discrimination and the "facially neutral" practices that embody or perpetuate it.z.1 The analysis of discrimination, as embedded in ostensibly neutral norms and standards, owes much to the feminist critique of earlier civil rights law, with its narrow focus on the direct and indirect effects of intentional discrimination (see Rebell1986). Feminists have argued that the design of physical structures and social practices for one group-able-bodied males-constitutes a significant form of discrimination against the rest. If the structures and practices of our society embody a norm of male functioning, they also embody a norm of healthy functioning. As Susan Wendell (1989) argues, Life and work have been structured as though no one of any importance in the public world ... has to breastfeed a baby or look after a sick child.... Much of the world is structured as though everyone is physically strong ... as though everyone can walk, hear and see well. (P. 111) This position was anticipated a generation ago by Jacobus tenBroek (19 66), who argued that the right of the disabled "to live in the world" required comprehensive changes in our physical and social order, not just in the design of buildings and public spaces but also in the duties of care owed by "abled" pedestrians, drivers, common carriers, and property owners to disabled people traveling in public places. The refusal to make these changes denied the disabled their right to live in the world as much as the exclusion of blacks and women from public facilities. The ADA famously embodies this notion of structural discrimination. It treats the failure to make "reasonable accommodation" for people with disabilities, in the design of buildings and facilities and in the structuring of jobs, as a form of discrimination. It provides exemptions only for undue burdens and for changes that would alter the fundamental nature of the activity. Some commentators maintain that an antidiscrimination approach is not appropriate for disability because of vast differences in the prevailing attitudes and practices toward different

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impairments and in the experiences of people with those impairments. Thus, Bickenbach (1996) argues, "Not only are the social responses to different forms of mental and physical difference vastly different, there is almost no commonality of experience, or feelings of solidarity, between people with diverse disabilities" (p. 6). Because I wish to consider a different question, I will assume, for the sake of argument, that people with impairments face the kind of prejudice necessary to claim discrimination and that many or most of the environmental barriers they face are attributable directly or indirectly to that prejudice. 24 The issue I will address is not whether people with disabilities can be regarded as victims of structural discrimination but whether we can eliminate structural discrimination without the guidance of a substantive theory of justice. Clearly, the elimination of structural discrimination involves more extensive reconstruction for disabled people than for women. As one judge commented about an early disability discrimination statute, What must be done to provide handicapped persons with the same right to utilize mass-transportation facilities as other persons? Does each bus have to have special capacity? Must each seat on each bus be removable? Must the bus routes be changed to provide stops at all hospitals, therapy centers, and nursing homes? Is it required that buses be able to accommodate bedridden persons? (Quoted in Wegner 1984:404) Even tenBroek (1966) conceded that "the policy of integration has its limitations: it cannot be pushed beyond the physical capacity ofthe disabled" (p. 914 ). The limitations are not physical so much as technological and economic. The "physical capacity of the disabled" depends on available technology, and that, in turn, depends on the resources invested in research and implementation. For example, opening doors is "beyond the physical capacity" of many disabled people, but that limitation can be overcome by electric door openers. Securing the right of people with disabilities to "live in the world" involves an indefinite commitment of resources. An injunction against discrimination does not, by itself, tell us the extent to which we must modify our physical and social environment to accommodate people with disabilities. It is one thing to agree that physical structures and social practices have been designed for those who fall within a very narrow range of physical and mental variation, that this results in part from the devaluation of those outside the range, and that this constitutes a powerful, if unwitting, form of discrimination. It is quite another matter to decide how we should redesign those structures and practices to end discrimination against people who fall outside the range. What norm should we adopt? A requirement that structures and practices be designed to strictly equalize burdens or benefits (e.g., the time to get by public transit from point A to point B) for all people in every conceivable mental or physical condition is obviously problematic, as the judge's comments suggest. A standard based on the structures and practices that we would obtain if we did not devalue people with disabilities would require that we suspend the attitudes we have every reason to regard as entrenched and pervasive. Even if we could imagine a society in which people with impairments were not devalued, however, that exercise would not yield a determinate standard for structuring the physical and social environment to accommodate the full range of human physical and mental variation. While the members of such a society, free of the prejudices that taint our own judgment, would doubtless condemn many social practices and arrangements to which we are indifferent or inured, they would still need a theory of justice to decide on the practices and arrangements they should adopt for themselves. How would they, for example, design their educational systems and structure their jobs to accommodate people with very limited cognitive functioning? Doubtless, they would find solutions through the rough-and-tumble of their untainted political processes. But it would still make sense to ask if those solutions were just. This reflects a more general problem with procedural or relational approaches to justice. We can acknowledge that some procedures have criteria for fairness that are independent of the outcomes they produce and that in some contexts, justice may be purely procedural, such that any outcome produced by a fair procedure is ipso facto fair. However, when we are assessing

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not discrete, context-specific procedures such as lotteries but whole social systems, it is doubtful that we could find procedural or relational criteria-that is, of nondiscrimination, nonoppression, and nonsubordination-adequate to assess the justice of the society and of the outcomes experienced by its members. Even if we could establish and apply such procedural criteria independently of distributive considerations, we could not assume that their satisfaction would always yield just outcomes or that any outcome that seemed intuitively unjust could be traced to an infirmity in social relationships. It is a sociological question whether oppressive and exploitative social relationships must produce great disparities in various kinds of advantage, but it is a conceptual or moral question whether we can judge disparities in advantage as unjust without having traced them to such a relationship. Some philosophers suggest that we cannot. Thus, Richard Norman (1999) argues, What is unjust is not the bare fact that some are better off than others, but the facts of domination and exploitation. These terms are central to the vocabulary of injustice, and they serve to pick out the facts that power is unequally distributed, and that this enables some members of a community to make use of others and to prosper at their expense. (P. 191) But this seems mistaken if domination and exploitation mean anything more than participation in a social scheme that gives one unjustified advantages. The use of force or deception to create or maintain such advantages (or even an improper reliance on psychological or physical vulnerability) surely makes them more objectionable. Yet they are objectionable even if they are acquired without force or deception (or exploitation, if it means more than participation in a scheme that produces such advantages). There are circumstances in which better-off people will be guilty of tolerating injustice but not of dominating or exploiting worse-off people. Thus, consider a society earnestly striving for justice, in which better-off people have relinquished many of their perquisites and their claims to them. There may well be reasonable disagreement within that society about what justice requires on issues ranging from the fairness of academic tracking, the acceptability of significant income disparities between managers and workers, and the appropriate level of investment in geriatric medicine. It should be possible to argue that the society had made the wrong decision in any of these areas and was to that extent unjust, without com,iemning it for domination and exploitation. To deny this possibility is either to make the implausible empirical claim that domination and exploitation are present whenever unjustifiable disparities in outcome are found or else to strip those terms of their opprobrium by defining them to be present whenever such disparities are found.

Is an Account of Equality as Equal Citizenship Adequate for Disability Policy? Several recent political theorists have argued that justice is concerned with equality only in a limited social and political sense. While justice imposes constraints on distribution and on disparities in certain forms of advantage, it does not require equality of resources or welfare, let alone equality on some more comprehensive metric of well-being (Anderson 1999; Miller 1997, 1999). This general point, reminiscent of Scanlon's (198 8) suggestion that different conceptions of well-being are appropriate in different contexts, is well made by Richard Norman (1997): Egalitarian distribution cannot plausibly be comprehensive, and the idea that it should be is an idea which has standardly incurred the derision of anti-egalitarians. Some people are incurably shy and find it difficult to form deep emotional relationships with others. Some people are emotionally volatile, forming relationships only to destroy them and move on. Some people strike a balance between these extremes. The third group are likely to have

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more satisfying lives than those in the first or second group. Is this inequality "a bad thing"? ... The commonsense answer is "That's life." The idea that we ought to redistribute emotional sensitivity (by genetic engineering?) so that everyone has an equally fulfilling emotional life would be a caricature of egalitarianism. (P. 246) A more modest and appropriate egalitarianism would treat disparities in well-being as relevant to justice only to the extent that they undermined equality in basic social or political roles, in status and participation. Proponents of this narrow notion of political equality see its principle virtue as identifying the core injustice in various social and economic disparities-the denial of equal citizenship-and as avoiding the intrusiveness of more comprehensive egalitarian theories. I will focus on the recent account of "democratic equality" offered by Elizabeth Anderson (1999) because it draws from both the distributive and the procedural or social relationship approaches discussed above and because it is informed by disability scholarship and has explicit implications for disability policy. Her account suggests that equality, in the sense relevant to justice, can be secured for people of varying physical and mental endowments without quixotic and demeaning attempts to achieve a more comprehensive equality. Democratic equality, as Anderson (1999) presents it, is an interesting hybrid of distributive and procedural approaches. Like many philosophers who reject comprehensive equality as a social or political imperative (Miller 1997, 1999; Norman 1997, 1999; Young 1990), she sees injustice as something quite distinct from and more egregious than mere unjustified disparities in well-being. She identifies as the core of social and political injustice what others have identified as the core evil of discrimination-the treatment of some people or groups of people as moral inferiors: In egalitarians asserted the justice or necessity of basing social order on a hierarchy of human beings, ranked according to intrinsic worth. Inequality referred not so much to distributions of goods as relations between superior and inferior persons .... Such unequal social relations generate, and were thought to justify, inequalities in the distributions of freedom, resources, and welfare. (Anderson 1999:312) Anderson recognizes, however, that the elimination of such hierarchy requires a certain kind of equality among the members of a society, and she attempts to offer a positive account of that equality. She builds on Sen's (1980, 1993) capabilities metric and endorses its emphasis on activity and participation. But she regards only a small set of capabilities as critical for the kind of equality a just society should pursue: Negatively, people are entitled to whatever capabilities are necessary to enable them to avoid or escape entanglement in oppressive social relationships. Positively, they are entitled to the capabilities necessary for functioning as equal citizens in a democratic society. (Anderson 1999:317) The set of capabilities Anderson finds necessary for these purposes is fairly extensive, however: To be capable of functioning as an equal citizen involves not just the ability to effectively exercise specifically political rights, but to participate in the various activities of civil society more broadly.... And functioning in these ways presupposes functioning as a human being.... To be capable of functioning as a human being requires effective access to the means of sustaining one's biological existence-food, clothing, medical care-and access to the basic conditions of human agency-knowledge of one's circumstances and options, the ability to deliberate about means and ends. (Anderson 1999:317-18) While this might seem like a tall order, Anderson emphasizes that it does not require equality in many things that people dearly value, such as sensual pleasure, romantic fulfillment, or intellec-

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tual stimulation. She argues that her functional democratic orientation to equality avoids the objectionable implications for disability of welfare or resource metrics. It does not seek to compensate people with impairments for their alleged unhappiness or inefficiencies in consumption but to ensure their standing as full citizens: Democratic equality ... demands, for instance, that the disabled have good enough access to public accommodations that they can function as equals in civil society. To be capable as functioning as an equal does not require that access be equally fast, comfortable, or convenient, or that one get equal subjective utility from using public accommodations. There may be no way to achieve this. But the fact that, with current technology, it may take an extra minute or two to get into city hall does not compromise one's standing as an equal citizen. (Anderson 1999:334) Anderson appears to be claiming that the important thresholds for democratic equality can be met and that any more precise, exacting, or comprehensive equality is not necessary. Both these claims are questionable. On its face, Anderson's conception of equal citizenship requires the indefinite expenditure of resources to achieve partial reductions in inequality, while her placement of certain capabilities outside the purview of democratic equality may not satisfy a robust notion of equal concern and respect. The suggestion that democratic equality imposes thresholds that can be met by all or nearly all citizens is belied by Anderson's list of relevant capabilities. Thus, for example, "effective access ... to medical care" would require indefinite expenditures for citizens with chronic and degenerative health conditions, unless effective is understood to mean only formal or logistical access to perfunctory care. However, such a spare understanding would hardly serve the purposes of democratic equality because it would not secure (to the limited extent that current or emergent medical technology permitted) the freedom from debility and pain necessary to take part in civic life. Such freedom cannot be guaranteed; it can only be achieved to a greater or lesser extent, by a greater or lesser number of people, through the use of scarce resources. There is no universally achievable threshold for the capability of "functioning as a human being," only a goal that competes with the enhancement of other capabilities. A similar point could be made about competence in deliberation, which Anderson (1999) regards as an element of "access to the basic conditions of human agency." We could spend an indefinite amount on education, training, and support for people with cognitive disabilities without achieving such competence (Veatch 1986). As protracted litigation over the requirement of a "free and appropriate education" under the Indivi~uals with Disabilities Education Act has made painfully dear, there are sharp trade-offs involved in even marginally enhancing this capability (Howe 1996). Such trade-offs arise regardless of whether we treat cognitive disability as a problem of internal function or environmental accommodation. Although mental incompetence is socially constructed, in the sense that society determines the cognitive complexity of many tasks and sets the minimum standards for proficiency (Buchanan 1996; Wikler 1979), decreasing the complexity of those tasks or lowering the standard for proficiency may have considerable social costs. Again, there is no universally achievable threshold for the capability of "functioning as a human being," only a goal that competes with the enhancement of other capabilities. If Anderson (1999) underestimates the difficulty of achieving "sufficient"-as opposed to equal-levels of functioning, she also underestimates the harshness of excluding a wide range of capabilities from the scope of democratic equality. She offers examples of relatively trivial pursuits, such as playing cards experdy, enjoying luxury vacations, and competing in beauty pageants, as capabilities that democratic equality can safely ignore. However, to extend G. A. Cohen's (1989) criticism of Sen's capabilities approach, an impaired individual might be able to function quite well "as a human being, as a participant in a system of cooperative production, and as a citizen of a democratic state" (pp. 918-21) while in constant low-grade pain, bereft of friends, lovers, and family and devoid of aesthetic and cultural stimulation. It seems uncomfortably instrumental to regard a person's pain, loneliness, and drudgery as matters of collective or

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Philosophical Issues

public concern only to the extent that they affect his or her capacity to work or vote. The refusal to view the alleviation of severe and protracted pain or loneliness as a general obligation seems inconsistent with an equal concern for those who experience such pain or loneliness. We may have to accept comprehensive measures of well-being and considerable intrusion into our private lives as the price of a robust commitment to equal concern and respect. In focusing on the weaknesses of Anderson's (1999) account, I do not want to overlook one of its most significant achievements. It represents one of the first sustained efforts of a mainstream political philosopher to take disability scholarship seriously. 25 Even if Anderson underestimates the extent to which democratic equality requires harsh trade-offs and intrusive interventions, she has made great strides in elevating people with impairments from caricatures and cameo appearances to equal partnership in a challenging intellectual and moral inquiry.

CONCLUSION: THE PROSPECTS FOR CONVERGENCE There is an intriguing symmetry in the challenges facing distributive and relational accounts of justice as they apply to disability. Distributive accounts must recognize the centrality to justice of equal social and political participation and develop metrics of individual well-being in which the capacity and opportunity for such participation figure prominently. Relational accounts, in turn, must make the notions of nondiscrimination and nonoppression sufficiently determinate to guide the reconstruction of the physical and social environment. Hybrid approaches such as Anderson's (1999) raise hopes for a convergence between distributive and relational accounts of justice. Those hopes, however, may be illusory. Justice, as Walzer (1983), Miller (1999), and others argue, may be irreducibly plural. Although both distributive and relational accounts of justice appear to be guided by a principle of equal concern and respect, the former emphasize concern, the latter respect. The two kinds of accounts focus on inequalities that, however closely correlated, may be morally distinct. The failure to take adequate account of atypical functioning in the design of the physical and social environment may be a fundamentally differen't kind of wrong than the treatment of people with atypical functions as inferior beings. These wrongs may require different remedies: the former, redistribution; the latter, recognition (Fraser 1995). Perhaps, then, a single theory of justice cannot do justice to both aspects of impairments, as sources of functional limitation and as stigmatized differences. We may require both distributive and relational accounts to guide disability policy. Whether justice for people with impairments is singular or plural, it will be better understood and perhaps more fully realized if philosophers and disability scholars take each other seriously. That requires philosophers to become more attentive to the perspectives and research of disability scholars and disability scholars to become less skeptical and dismissive of philosophical inquiry. The prospects for dialogue are improving, as philosophers become more restless with armchair analysis and disability scholars expand their disciplinary frontiers beyond social science.

NOTES 1. Useful overviews of this debate are found in Caplan (1998) and Wachbroit (1998). 2. While Boorse (1977) defines the goal of functions as individual survival and reproduction, he also asserts that

"function statements are about a trait's standard contribution in some population or reference class" (p. 556), so that

a single life-saving contribution by a trait does not make it a function. "One squirrel might catch its rail in a crack en route to being run over by a car, but that would not make defense against cars a function of the squirrel tail" (p. 557). In taking the species as the reference class for functions, Boorse implicitly restricts the settings in which functions are

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claimed to contribute to individual survival and flourishing to the standard environments where the trait was established in the species. 3. An interesting example of postgestational plasticity was presented in the recent U.S. Supreme Court case of Albertson's, Inc. v. Kirkinburg (1999), in which the plaintiff's subconscious adjustment for monocular vision apparently prevented that condition from "substantially limiting" his work as a truck driver. 4. Boorse (1975) himself offers two reasons why species-typical functioning may be generally desirable. First,

typical functions such as heart pumping and digestion "tend to contribute to all manner of activities neutrally; second,

people enjoy engaging in many of these functions, like eating and sex, quite apart from their contribution to other goals and activities" (p. 60). The first reason, which Boorse regards as "surely the main [one)," may suggest no more than that physical survival is a prerequisite to the pursuit of many goals and activities. Or it may suggest that speciestypical functions owe their utility to their typicality and to the fact that the sol'ial environment is tailored to people with normal functions, a claim often made by disability advocates. The second reason is more an empirical than an evaluative claim-that species-typical functions are desired, not that they are desirable.

5. The appeal of a state-of-nature baseline, as well as the associated view that a society is more responsible for

the misfortunes it causes than those it merely allows (see note 6}, arises, I suspect, from an unwarranted extension of

the deontological principle that agents are more responsible for what they cause than for what they allow. However valid this principle may be for individuals, it is untenable for society. Our commonsense understanding of human agency allows us to draw a reasonably clear distinction between action and omission. To the extent that the distinction

between causing and allowing diverges from the distinction between action and omission (since, for example, we can cause by strategic omission), we can have recourse to a counrerfactual world where the individual agent never existed.

Even if that counterfactual poses conceptual difficulties in certain cases {e.g., the mother's existence in the case of abortion) or yields surprising results (e.g., It's a Wonderful Life), it seems adequate for routine cases.

In contrast, we have no clear idea of what it means for a society or other collective entity to act (except in narrow domains such as corporate law), and the counterfactual comparison, to a world without this particular society or organized society in general, is far harder to make. Moreover, a primary motivation for drawing the causing/allowing

distinction for individuals-to recognize a sphere of special responsibility and preserve discretion elsewhere-hardly applies to a collectivity, which does not need personal space, pursue ground-level projects, or enjoy prerogatives. Even more clearly than individuals, societies can be judged to have caused those disadvantages they are responsible for, rather than as being responsible for those disadvantages they have caused.

This is not to deny that a society or state may incur special obligations to certain members as a result of specific actions or policies. It may owe compensation for neglect or mistreatment (e.g., to Japanese internees or the subjects of

the Tuskegee study) or for special services rendered or risks assumed (e.g., to combat veterans). 6. At some points, Pogge (1989) suggests that the relevant distinction is not between socially caused and naturally occurring disadvantages but between those a society causes and merely allows. The latter would include disadvantages that were socially caused but not amibutable to the present social order (e.g., that were caused by other societies or by social developments that antedate the present society). But the caused/allowed distinction is difficult enough to draw for individual agents; it may be untenable for collective or social agents. The distinction is particularly difficult for Pogge to draw because he cannot rely on the kindred distinction between the effects that a cooperative scheme intends and those that it merely foresees. The latter distinction does not make a moral difference on the Rawlsian theory of justice that Pogge is elaborating. The difficulty in teasing apart natural and social causes for various limitations on activity poses a challenge for Amundson's (1992) distinction between "those features of the handicapping environment that are socially constructed [and] those which are independent of human choice" (p. 116). Amundson is well aware, of course, that the "handicaps" associated with biological impairments arise from their interaction with the physical and social environment. Yet he fails to consider the problem this interaction raises for amibuting a handicapping feature of the environment to either natural or social causes. Increasingly few handicapping features remain "independent of human

choice" as technology expands the potential for human control of the physical environment, and even those features still beyond human control, such as earth's gravity, can be exploited by humans to exclude people with various impairments.

7. A somewhat more modest, but no more determinate, baseline is advanced by Harlan Hahn, the leading proponent of the minority group model of disability. Hahn (1999) endorses Michael Oliver's suggestion that justice for people with disabilities be assessed by principle of "equal environmental adaptation." He argues that "few judges or lawyers seem willing to acknowledge the heavy burdens imposed on disabled citizens by the demands of the existing environment ... most appear to be in a state of denial about the massive advantages bequeathed to the non-disabled majority by the present 'taken-for-granted' environment" (p. 39). Hahn is careful enough to recognize that the acknowledgment of those advantages would not preclude the attribution of some disadvantages to the impairments of

the non disabled minority. But the very notion of "equal environmental adaptation" is misleading, in part because of

the asymmetrical character of disability. "Equal adaptation" for people who speak two different languages might be

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bilingual instruction or equal classroom time in both languages; an equal adaptation for people of two vastly different

sizes, Lilliputians and Brobdagnagians, might consist of facilities and equipment in both sizes or in some intermediate size. However, despite the familiar examples of stairs versus ramps and spoken language versus signing, the very idea

of equal adaptation to standard and impaired functions is obscure, in part because many adaptations for the latter would also serve the former. This is partially because it is unclear how equality in adaptation is to be assessed in a way that would distinguish it from equality in result. 8. A final claim about social causation would be based on the intentional character of the disadvantages faced by people with disabilities. The claim would be that those in positions of power keep people with impairments

marginalized and oppressed to serve their own interests (e.g., to keep "able-bodied" workers docile and inexpensive

by maintaining a large reserve of unemployed individuals). On this view, the biological impairments of disabled individuals would be seen as causally inert and pre textual, playing much the same role as differences in skin color and ethnicity. This would provide a clear sense in which the "real cause" of disability was social. Yet it is simply not plausible to attribute most of the disadvantage of people with disabilities to such calculated policy, as opposed to pervasive neglect. 9. TheiCIDH-2 recognizes that the environment plays a causal role at the level of impairments as well as activity

limitations and participation restrictions. Proponents of some alternative classification schemes insist that the impairment category must be free of environmental influence, but this seems clearly misguided since even physiological states are mediated by environmental factors. However, there is certainly a strong intuitive sense that the environment plays a greater role in less basic activities than in more basic ones and in impairments than in activity limitations.

10. Griffin (1986) discusses a range of utilitarian and nonutilitarian positions on well-being. 11. One philosopher (Nordenfelt 1997) has argued that the ICIDH distinction between disability versus handicap should be refined or replaced with a distinction between basic and nonbasic action. On this account, disabilities

would be a subclass of impairments-impairments of basic actions or the most proximate effects of impairments~n the capacity to perform basic actions.

12. Some of these functions or actions straddle the categories of disability classification schemes. Thus, the Americans with Disabilities Act lists seeing, hearing, and walking as major life activities, along with working and caring for oneself, activities that obviously have a more contingent relationship to impairment. The drafters of the ICIDH-2

continue to struggle over whether to treat seeing and hearing as bodily functions, activities, or both.

13. The relationship between touch and sight is raised by "Molyneux's problem." Would a person acquiring vi-

sion for the first time as an adult immediately recognize the shapes he saw as the same ones he knew by touch? Recent

philosophical writing on the problem suggests that the connection between visual and tactile experiences of the world is especially close (Grice 1962; Thomson 1974). 14. For a more detailed account of how egalitarian theories of justice treat disability, see Wasserman in Silvers et al. (1998). 15. The contrast between these first two approaches reflects a broader division among theories of justice. Those theories, which have proliferated since the publication ofJohn Rawls's (1971)A Theory ofjustice, differ in their basic

orientation-to the procedures or processes by which resources are generated, appropriated, and exchanged or to the

disttibution or end state resulting from those processes (Nozick 1974). A purely procedural theory would have no need for a metric of well-being with which to assess end states since it would endorse any outcome reached by fair pro-

cedures. Libertarian accounts, for example, treat any distribution as fair that results from the exchange of legitimately

acquired resources by voluntary transactions devoid of fraud or force (Nozick 1974). But libertarian accounts require some criteria of justice in acquisitions or holdings, and it has been argued that distributive standards are already built into those criteria, such as the "Lockean proviso," which requires that any appropriation of initially unclaimed re-

sources leave "as much, and as good, in common." (Many distributive accounts also have procedural elements. For

example, in Rawls's theory, any distribution will be just that arises from the political and economic processes occurring under a just "basic structure"-one that embodies the two (substantive) principles of justice for which Rawls ar-

gues.) Other procedural accounts focus on political processes, such as democratic voting. Again, it has been argued that distributive constraints are required to make such mechanisms fair. Still, other procedural accounts, more famil-

iar in the disability context, assess fairness in terms of the relationships between social groups, particularly the presence or absence of oppression, domination, and hierarchy (e.g., Young 1990), or in terms of the attitudes informing those relationships, such as the presence or absence of hatred, contempt, and devaluation.

16. To some extent, the distinction between resources and welfare tracks that between objective and subjective conceptions of well-being discussed in the last section. However, the overlap is only partial. First, most objective ac-

counts of well-being treat the possession of material resources as having mainly instrumental value. Second, many philosophers believe, with Scanlon, that not all aspects of well-being, important to the individual or to her or his loved ones, are the proper concern of political justice. They believe that even if what we regard pleasure or satisfaction as part of what makes our own lives, or those of our family and friends, goes well, it may not be something we owe each

other as fellow citizens.

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17. Some proponents of resource equality have attempted to encompass internal and external resources, usually

by giving everyone a claim on each other's skills and talents. Such schemes seem oppressive, however, in creating a "slavery of the talented." No one has a special say over his or her own time and energy, and the talented must pay dearly for leisure because their labor is in so much demand. 18. Other philosophers (e.g., Kymlicka 1991) have expanded Rawls's list of primary social goods to include more participatory goods such as membership iu a culture or community. 19. Several other political philosophers have suggested ways of expanding the subject matter of distributive justice beyond the ownership or control of material resources. Thus, some of the claims of linguistic and cultural minorities can be framed in distributive terms by recognizing "the social bases of self-respect" (Rawls 1971) or cultural membership (Kymlicka 1991) as goods, subject to distributive goals or constraints, because they provide the context for the selection and enjoyment of other goods. Iris Young (1990) expresses a widespread skepticism about these prospects for extending the subject matter of distributive justice to such intangible goods. She asks, for example, What can it mean to distribute self-respect? Self-respect is not an entity or measurable aggregate, it cannot be parceled out of some stash, and above all, it cannot be detached from persons as a separable attribute adhering to some unchanged substance.... It is certainly true that in many circumstances the possession of distributable material goods may be a condition of self-respect. Self-respect, however, also involves many

nonmaterial conditions and cannot be reduced to distributive arrangements . ... None of the forms and not

all of the conditions of self-respect can be meaningfully conceived as goods that individuals possess; they are rather relations and processes in which the actions of individuals are embedded. (P. 27) Yet a theory of distributive justice does not require that self-respect or cultural membership itself be subject to distribution or that it be based entirely or even primarily on the possession of goods that can be distributed. Rather, it merely requires that we be able to assess, however crudely and fallibly, individuals' self-respect or cultural affiliation and that we be able to alter social arrangements to reduce the disparities we find in those social goods or aspects of well-being. 20. Justice

will also require expensive medical intervention for some impairments, particularly those acquired

adventitiously by adults. While the restoration of normal functioning should not have the lexical priority it is accorded by some accounts of justice in health care (e.g., Daniels 1986), it will often be an urgent and weighty interest. 21. As I explain in note 15, I am treating relational accounts of justice as a subclass of procedural account.

22. A relational theorist such as Iris Young might reach the same conclusion for different reasons because discriminatory attitudes and practices are so entrenched that "they are beyond the reach of law and policy to remedy" (Young 1990: 124). As Young argues, . The behavior, comportments, images, and stereotypes that contribute to the oppression of bodily marked groups are pervasive, systematic, mutually generating and murually reinforcing. They are elements of the

dominant cultural practices that lie as the normal background of our liberal democratic society. Only changing the cultural habits themselves will change the oppression they produce and reinforce. (P. 152) Young may underestimate the capacity of law and policy to alter such habits, but this is a distinct issue from the one

I address in the text, which concerns the ends rather than the means of antidiscrimination policy.

23. There is an ongoing debate, which several philosophers have recently joined, about the adequacy of such an antidiscrimination rubric for disability policy. For a more detailed discussion of this issue, see Bickenbach (1993), Bickenbach et al. (1999), Kelman and Lester (1997), and Silvers et al. (1998). 24. This is not to assume that conscious attitudes of aversion are the main causes of structural bias-merely that they are an integral part of the complex web of attitudes, behaviors, and practices that constitute what Young (1990:122-48) calls oppression and subordination. See note 15. 25. In this effort at interdisciplinary dialogue, Anderson is assisted by the fact that one of her "informants," Anita Silvers, is herself an experienced professional philosopher who has written influentially on disability.

REFERENCES Albertson's v. Kirkinburg, 527 U.S. 555 (1999). Albrecht, G. and P. Devlieger. 1999. "The Disability Paradox: High Quality of Life against All Odds." Social Science and Medicine 48:477-88.

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Amundson, R. 1991. "Disability, Handicap, and the Environment." Journal of Social Philosophy 23 (1): 1M-D. . - - - . 2000. "Against Normal Functions." Studies in the History and Philosophy of Biological and Biomedical Sciences 31 (1): 33-53. Anderson, E. 1999. "What Is the Point of Equality?" Ethics 109:187-337. Arneson, R. 1989. "Equality and Equal Opportunity for Welfare." Philosophical Studies 56:77-93. - - - . 1990. "Liberalism, Distributive Subjectivism, and Equal Opportunity for Welfare." Philosophy and Public Affairs 19:158-94. Bickenbach, J. 1993. Physical Disability and Social Policy. Toronto: University of Toronto Press. - - - . 1996. "Equality, Rights, and the Disablement Process." Paper presented at the annual meeting of the American Philosophical Association, Central Division, April, Chicago. Bickenbach, J ., S. Chatterji, E. M. Badley, and T. B. Ostiin. 1999. "Models of Disablement, Universalism, and the International Classification of Impairments, Disabilities, and Handicaps." Social Science and Medicine 48:1-15. Boorse, C. 1975. "On the Distinction between Disease and Ulness." Philosophy and Public Affairs 5:49-68. - - - . 1977. "Health as a Theoretical Concept." Philosophy of Science 44 (4): 541-73. - - - . 1987. "Concepts of Health." Pp. 359-93 in Health Care Ethics: An Introduction, edited by Donald VanDeveer and Tom Regan. Philadelphia: Temple University Press. Brock, D. 1995. "Justice and the ADA: Does Prioritizing and Rationing Health Care Discriminate against the Disabled?" Social Philosophy and Policy 12 (1): 159-85. - - - . 1997. "Ethical Issues in the Development of Summary Measures of Population Health Status." Paper presented at the Institute of Medicine, National Academy of Sciences, Workshop on Summary Measures of Population Health Status, December, Washington, DC. Buchanan, A. 1996. "Choosing Who Will Be Disabled: Genetic Intervention and the Morality of Inclusion." Social Philosophy and Policy 13 (1): 18-46. Candlish, S. 1984. "Inner and Outer Basic Action." Proceedings of the Aristotelian Society 84:83-101. Caplan, A. L. 1998. "The Concepts of Health, Disease, and Illness." Pp. 57-73 in Medical Ethics, edited by Robert Veatch. Boston: Jones & Bartlett. Cohen, G. A. 1989. "On the Currency of Egalitarian Justice." Ethics 99:906-44. - - . 1993. Equality of What? On Welfare, Goods, and Capabilities: The Quality of Life. New York: Oxford University Press. Crocker, D. 1995. "Functioning and Capability: The Foundations of Sen's and Nussbaum's Development Ethic: Part II." Pp. 153-98 in Women, Culture, and Development, edited by Martha Nussbaum and Jonathan Glover. New York: Oxford University Press/Clarendon. Daniels, N. 1986. "Justice and Health Care." Pp. 290-325 in Health Care Ethics: An Introduction, edited by Donald Van DeVeer and Tom Regan. Philadelphia: Temple University Press. - - - . 1990. "Equality of What: Welfare, Resources, or Capabilities?" Philosophy and Phenomenological Research 50 (Suppl.): 173-97. - - - . 1997. "Distributive Justice and the Use of Summary Measures of Population Health Status." Paper presented at the Institute of Medicine, National Academy of Sciences, Workshop on Summary Measures of Population Health Status, December, Washington, DC. Danto, A. 1965. "Basic Actions." American Philosophical Quarterly 2:108-15. Dupre, J. 1998. "Normal People." Social Research 65 (1): 111-48. Dworkin, R. 1981. "What Is Equality? Part II-Equality of Resources." Philosophy and Public Affairs 10:183-345. Edwards, S.D. 1997. "Dismantling the Disability/Handicap Distinction." Journal ofMedicine and Philosophy 22:589-606. Engelhardt, H. T., Jr. 1986. The Foundations of Bioethics. New York: Oxford University Press. Fraser, N. 1995. "From Redistribution to Recognition: Dilemmas of Justice in a 'Post-Socialist' Age." New Left Review 111:68-93. Goldman, A. 1970. A Theory of Human Action. Englewood Cliffs, NJ: Prentice Hall. Grice, W. P. 1962. "Some Remarks about the Senses." In Analytical Philosophy, edited by R. J. Butler. Oxford, UK: Oxford University Press. Griffin,]. 1986. Well-Being Its Meaning, Measure, and Moral Importance. Oxford, UK: Oxford University Press. - - - . 1993. "Commentary on Dan Brock: Quality of Life Measures in Health Care and Medical Ethics." Pp. 133-39 in The Quality of Life, edited by Martha Nussbaum and Amartya Sen. Oxford, UK: Clarendon.

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Hahn, H. 1999. "A New Approach to Developmental Disabilities: From Perspective to Proposals." Unpublished paper, Disability Forum, Santa Monica, CA. Hornsby, J. 1980. Actions. London: Routledge Kegan Paul. Howe, K. R. 1996. "Educational Ethics, Social Justice and Children with Disabilities." Pp. 46-64 in Disability and the Dilemmas of Education and Justice, edited by Carol Christensen and Fazal Rizvi. Buckingham, UK: Open University Press. Kelman, M. and G. Lester. 1997.Jumpingthe Queen: An Inquiry into the Legal Treatment of Students with Learning Disabilities. Cambridge, MA: Harvard University Press. Kuhse, H. and P. Singer. 1985. Should the Baby Live? The Problem ofHandicapped Infants. Oxford, UK: Oxford University Press. Kymlicka, W. 1991. Liberalism Community and Culture. Oxford, UK: Clarendon. Lane, H. 1992. The Mask of Benevolence: Disabling the Deaf Community. New York: Knopf. Magee, B. and M. Milligan. 1995. On Blindness. Oxford, UK: Oxford University Press. Miller, D. 1997. "Equality and Justice." Ratio 10 (3): 222-37. - - - . 1999. Principles of Social Justice. Cambridge, MA: Harvard University Press. Murray, C. 1996. "Rethinking DALYs." Pp. 1-98 in The Global Burden of Disease: A Comprehensive Assessment ofMortality and Disability from Diseases, Injuries, and Risk Factors in 1990 and Projected to 2020, edited by C. Murray and A. Lopez. Geneva: World Health Organization. Nordenfelt, L. 1997. "The Importance of a Disability/Handicap Distinction." Journal of Medicine and Philosophy 22:607-22. Norman, R. 1997. "The Social Basis of Equality." Ratio 10 (3): 238-52. - - - . 1999. "Equality, Priority, and Social Justice." Ratio 12 (2): 178-94. Nozick, R. 1974. Anarchy, State, and Utopia. Cambridge, MA: Harvard University Press. Nussbaum, M. 1990. "Aristotelian Social Democracy." Pp. 203-52 in Liberalism and the Human Good, edited by R. B. Douglass, G. Mara, and H. Richardson. London: Routledge Kegan Paul. - - - . 1992. "Human Functioning and Social Justice: A Defense of Aristotelian Essentialism." Political Theory 20:202-46. Oliver, M. 1996. Understanding Disability: From Theory to Practice. London: Macmillan. Parfit, D. 1997. "Equality and Priority." Ratio 10 (3): 202-21. Pogge, T. 1989. Realizing Rawls. Ithaca, NY: Cornell University Press. - - - . 1999. "Human Flourishing and Universal Justice." Social Philosophy and Policy 16:332-61. Rawls, J. 1971. A Theory offustice. Cambridge, MA: Harvard University Press. Rebell, M. 1986. "Structural Discrimination and the Disabled." Georgetown Law Journa/74:1435-89. Rosenberg, A. 1986. "The Political Philosophy of Biological Endowments." Social Philosophy and Policy 5 (1): 2-31. Scanlon, T. 1988. "The Significance of Choice." Pp. 177-85 in Tanner Lectures on Human Values VIII, edited by S. McMurrin. Salt Lake City: University of Utah Press. - - - . 1998. What We Owe to Each Other. Cambridge, MA: Harvard University Press. Segal, J. M. 1998. "Living at a High Economics Standard: A Functionings Analysis." Pp. 342-65 in Ethics of Consumption: The Good Life Justice, and Global Stewardship, edited by David Crocker and Toby Linden. Lanham, MD: Rowman & Littlefield. Sen, A. 1980. "Equality of What?" Pp. 195-220 in Tanner Lectures on Human Values], edited by S. McMurrin. Salt Lake City: University of Utah Press. - - - . 1993. "Capability and Well-Being." Pp. 30-54 in The Quality ofLife, edited by Martha Nussbaum and Amartya Sen. Oxford, UK: Clarendon. Silvers, A. 1994. '"Defective' Agents: Equality, Difference and the Tyranny of the Normal." Journal of Social Philosophy 25:154-75. Silvers, A. and D. Wasserman. 1998. "Competence and Convention: Disability Rights in Sports and Education." Report from the Institute for Philosophy & Public Policy 18 (4): 1-7. Silvers, A., D. Wasserman, and M. Mahowald. 1998. Disability, Difference, Discrimination. Lanham, MD: Rowman & Littlefield. Singer, P. 1993. Practical Ethics. 2d ed. Cambridge, UK: Cambridge University Press. - - - . 1999. "All Animals Are Equal." Pp. 461-70 in Bioethics: An Anthology, edited by Helga Kuhse and Peter Singer. Oxford, UK: Blackwell. Sober, E. 2001. "Separating Nature from Nurture." Pp. 47-78 in Genetics and Criminal Behavior: Methods, Meanings, and Morals, edited by David Wasserman and Robert Wachbroit. New York: Cambridge University Press. tenBroek, J. 1966. "The Right to Live in the World: The Disabled in the Law of Torts." California Law Review 54:841-919.

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Thomson, J. 1974. "Molyneux's Problem." Journal of Philosophy 71:637. Veatch, R. 1986. The Foundation ofjustice: Why the Retarded and the Rest of Us Have Claims to Equality. Oxford, UK: Oxford University Press. Wachbroit, R. 1994. "Normality as a Biological Concept." Philosophy of Science 61:579-91. - - - . 1998. "Health and Disease, Concepts of." Encyclopedia of Applied Ethics 2:533-38. - - - . 2001. "Understanding the Genetics of Violence Controversy." Pp. 25-46 in Genetics and Criminal Behavior: Meanings, Methods, and Moral. New York: Cambridge University Press. Walzer, M. 1983. Spheres ofjustice. New York: Basic Books. Wasserman, D. 1996. "Some Moral Issues in the Correction of Impairments." journal of Social Philosophy 27 (2): 128-45. - - - . 1998. "Discrimination, Concept of." Encyclopedia of Applied Ethics ,1:805-13. Wegner, J. 1984. "The Antidiscrimination Model Reconsidered: Ensuring Equal Opportunity without Respect to Handicap under Section 504 of the Rehabilitation Act of 1973." Cornell Law Review 69:401-516. Wendell, S. 1989. "Toward a Feminist Theory of Disability." Hypatia 4 (2): 104-24. Wikler, D. 1979. "Paternalism and the Mildly Retarded." Philosophy and Public Affairs 8 (4): 63-87. World Health Organization. 1980. International Classification of Impairments, Disabilities, and Handicaps. Geneva: Author. - - - . 1997. ICIDH-2 Beta-1 Draft: International Classification ofImpairments, Activities, and Participation. Geneva: Author. Young, I. M. 1990. justice and the Politics of Difference. Princeton, NJ: Princeton University Press.

[3]

What I Learned Simi Linton

I have become a disabled woman over time. I certainly would have rejected such a title in the beginning. It could precipitate my death. Consign me to an itty-bitty life. And I was never a joiner. I would have been describing myself as part of that group-the ones whose lives are measured out by others. It took many people to bring me into the fold. To help me move toward disability, carrying myself in the upright posture of a newly enfranchised citizen. My advancement was due to other disabled people and, significantly, to the times we were living in. I came of age as a disabled person as the disability rights movement was evolving into a recognized political entity. In the years from 1971, when I left rehab, to the present moment, I have witnessed the passage of legislation aimed at integration and equity in education and employment, and the emergence of many disabled people from sheltered dwellings and workplaces. In recent years, I've observed the backlash against that legislation and the people who fought for it. This new cadre of disabled people has come out of those special rooms set aside just for us. Casting off our drab institutional garb, we now don garments tailored for work and play, love and sport. Indeed, as an indicator of our new social standing, the high-toned among us even appear in television commercials wearing such finery. While many of us have obvious disabilities-we wield that white cane or ride that wheelchair or limp that limp-we don't all necessarily, as I didn't in my early years, ally with the group. And all the others, those whose characteristics are more easily masked, come to the surface even more gradually, determining how, when, and to whom to declare their membership.

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For me and other disabled people, the process of claiming disability as an identity and the disabled community as our own is complex. I crept toward it, then skittered away. I remained for a long time an eavesdropper, a peeper. In that first year after the accident, there was so much to learn. Ostensibly we were at the rehab center to learn to use our changed bodies. To strengthen the muscles we could use and to adjust psychologically to our new states. This was aided by the rigorous program of physical and occupational therapy, and the sessions with psychologists and social workers. That covered the curriculum of this institution. But there was another curriculum we needed access to-we needed the tools and knowledge that experienced disabled people have. We were novices, and we needed to learn how to get better at being what we now were. Where do you find the motivation to get better at being "disabled"? What does that mean? Whom could we learn from? Was it the doctors, physical therapists, and nurses who tend to refer to all disabled people, whether in their care or not, as patients? Was it our family and friends, probably even more ignorant than we were of the ways of this new world, and many still in despair that they couldn't have us back the way we were before? It was, of course, our fellow travelers, but the only ones we had access to were maybe a month or two ahead of us in the game. It was clear from our experience inside the rehab world that people like us were not in charge. It was clear from our memory of the outside world, and from our few forays beyond the walls of the institute on day passes, that people like us were largely invisible. It is not surprising then that when I first came back out into the world using a wheelchair, I sought to minimize the outward signs of my impairment, and to downplay its significance. This encumbrance, this paraplegia, would not weigh me down, and the social role assigned to me would not script my life. Afraid of being engulfed, made invisible by the label, I sought to maintain as much of my individual identity and as much of my former lifestyle as possible. While there is merit in the impulse to be active and to think of oneself as an individual, I mistakenly thought that alliance with the group would be my downfall, that it would consign me to perpetual group-travel, all of us strapped down in the "Invalid Coach," bumping along Second Avenue on the way to see our rehab counselors. 109

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So, in those early years, I tended to describe the disability elements of my life primarily as the results of an event that occurred in one moment in time, "I was in an accident," and to present my current situation in the most concrete way, "I'm in a wheelchair." During my initiation at the rehab center I only hung out with the young people with mobility impairments. We avoided the other major cohort, the older people who had had strokes. I tentatively grouped myself with my buddies, yet I don't think we had a word for ourselves. I rejected the more inclusive term of the '7os, "handicapped," used to describe either the individual, as in "she or he is handicapped," or the group, "the handicapped." There was something static and absolute about that language. It was an institutional term, not one chosen to describe a neighbor or friend. If I were to say, "I am handicapped," I would be saying, I am one of them, not one of me. So, whether catching up with an old friend, or responding to inquiries in social situations, or writing an autobiographical essay for my creative writing class, I spoke of the critical incident and the functional consequences, but said little about the ideas, still barely formed, buzzing in my head, about the social significance, the politics, the meaning of "handicap" and all the cultural uses of the image of disability seen around me. When faced with intrusive inquiries from strangers that began, "What happened to you?" or "What's the matter with you?" I usually answered (and still do), "It's a long story," or "I was wounded in the Battle ofthe Bulge," and move away as quickly as possible. Sometimes it is hard not to answer. A long taxi ride, and the question asked in a concerned voice by a man who doesn't seem so much rude as mistaken. With only the bits of information I give-yes, an automobile accident; oh no, it was a long time ago; no, I wasn't driving; yes, too bad-the man will nod and commiserate and act as if he now knows what is important to know about disability-its genesis. I did not yet have a precise language to describe the other parts of the disability experience-the kinds of obstacles or the intrusive people I encountered every day-nor had I found a way to talk about my new situation as a natural state, my wheelchair as a convenience, or my experiences in ways that would be interesting to anyone besides myself and a few like-minded people. My Body Politic

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In the same way that I reduced my disabled state to its most elemental form, I was only able to talk about these encounters in the world as individual moments, isolated from one another. Although I sort of understood that there were connections among them, and I knew that other people encountered similar impediments, it was hard to see the pattern. And it was harder still to fathom the root cause of the problems we were faced with. In the beginning, of course, the accident was still fresh and its relation to my current state the clearest, so it is understandable that I would present that as explanation. Yet even if I had been further along in my personal history with disability, in the early '7os there was little I could read that would help me frame my experience in a different way. And even ten years later, I had not found a community like the one I encountered on the West Coast. I wish I had. I could have learned from them, and tried saying "cripple" out loud as I had begun to do there. It would be some time until I did. And even longer until I understood the many things that keep disabled people apart from one another. I began to get wind of an entity called the disability rights movement in the mid-'7os, shortly before I went to Berkeley. But it wasn't until I went out there and saw the effects of activism and a new way of talking about disability that I became interested in it. I had not labeled the problems I'd been encountering at school or in getting around town as discrimination, but once I heard people talking about it that way it made perfect sense. After I came back East, I was hungry for any news as I knew it could be helpful to me. Yet I was only able to get vague information from people I met here and there. I couldn't find anything about disability issues in the publications I looked at. The mainstream press had little. There was the occasional human-interest story that told a tragic tale and described the plucky determination of the "handicapped" man or woman, the "sufferer," the "victim" of some tragic condition. The story's main focus was on what had already happened-the cause of the injury or condition. The agonizing birth, the catastrophic accident, or the family medical history. Yet to uplift us, to reassure us, the article would somehow demonstrate the triumph of the human spirit. We might be told of a young woman's or man's resolve to walk again one day, or of a woman "confined," as they would say, to a wheelchair, sewing 111

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aprons at home, and feeling good that she could contribute something. Another story would tell us of someone who had achieved something seemingly extraordinary-going to college, becoming a lawyer-accomplishments it would appear were reserved for more robust people. The story inevitably included the word "despite ... ," followed by the name of the individual's condition, in the first sentence. We would also be told, implausibly, that the successful woman or man had "overcome disability." By focusing our attention on the individual and eliciting sympathy or awe, these articles diverted us from thinking about how to change social conditions. There were no comments on the discrimination these people faced or the lack of transportation; instead the people interviewed were asked if they missed all the things they used to do. The articles didn't mention how federal monies dispensed to disabled people came with a set of conditions that made it impossible to go fo work without losing needed health benefits. Instead these "news" items extolled the virtues of charitable contributions, both for the redemptive benefits to the giver, and for the salve they offered the givee. The people profiled were saddened, yet brave. No one was too angry. The papers would not display an angry cripple. They would neither burden us with the specter of an embittered man enraged at his fate, nor ask us to tolerate the rants of an activist who might expose problematic public policy or a corrupt state agency. Some of the more progressive newspapers might give us a taste of this, but it was usually done to demonstrate how U.S. policy in Vietnam had damaged so many lives and how the government was not doing anything to help disabled vets. That was the story told in the films Coming Home, The Deer Hunter, and Born on the Fourth of july. Disability and death were portrayed as the costs, the effects, of foreign policy. In this way, journalists and filmmakers used disability without ever explaining it. The articles did not include the long history of such neglect, and the ongoing discrimination faced by all disabled citizens, not only the vets. They used disability as a metaphor to symbolize something terrible, but failed to depict the terrible things done to us. Few of my college classes contained a word about disability. That didn't surprise me, nor did it bother me at the time. I was in college to get a solid liberal arts education-learning about disability would My Body Politic

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provide a marginal education, the type that would only prepare me to work in rehabilitation institutions or special education. The disability activism and pending legislation I would occasionally hear about outside the college seemed at the time to relate to practical matters, such as curb cuts and accessible transportation, not the sort of things you study. The significance of these changes seemed only for disabled people-for our comfort and convenience. College was a place of ideas, theory, metaphor, the history of important people and events. While I knew that these practical solutions could make a world of difference in some people's lives, it took a while till I saw their relationship to the study of history, anthropology, psychology, political science, and even longer till I made the connections to literature and to the arts. As it is for most students, I guess, the college curriculum initially appeared to me as a natural formation. This is what there is to know. I took issue with many things, of course. For instance, I mistrusted most forms of empirical research and laughed at the notion that the two-party political system offered real choice in contemporary America, but I somehow accepted the idea that there was such a thing as The Curriculum. I didn't really know what women's studies or African-American studies were until I was almost through with my undergraduate work, and it would take more years for me to understand their significance. I fancied myself a pretty sophisticated commentator on racial politics in America, and I had a great deal to say about how few black students there were at both the New School and Columbia, and how the faculty was predominantly white and male. I can't remember, though, if it registered how closely the scholarship we studied matched the profiles of the faculty. It wasn't until I became a professor myself that I noted that disabled people were rarely represented on the faculty. I could by then point out the impediments, the types of discrimination experienced, and the history of oppression that precluded so many disabled people from earning doctorates and getting teaching positions. I would later, in 1998, write a book examining how knowledge about disability is presented in the academic curriculum. So much receded into the background and went unnoticed. At first, I even experienced the inaccessible classrooms as part of the natural landscape, like trees or rocks. It didn't dawn on me that steps or the width of a doorway were results of decisions made by people who 113

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didn't have my best interests in mind. The decisions they made were a sorting system; we let some in, we keep you out. After I came back from Berkeley in 1975, things started to change, and by my last year at Columbia I scrutinized everything. When disability wasn't mentioned in class, I brought it up. Of course, I had a limited range of things to say, I was figuring it all out as I went along. I saw too that most of my professors and fellow students found these inquiries irrelevant, or particular to me and of little use to them, and that inhibited me. There were a few professors who encouraged me to do papers and research with a disability focus. They readily admitted they knew little about the things I wanted to explore, and when we found how few resources there were to draw on, their interest wavered. It may seem strange that it was hard to find research on disability, but the material I found was almost exclusively in the rehabilitation or special education journals. This material focused on what to do to and for individuals. Once I began to think about ideas that now seem very basic to me (for instance, that there is a complex history to the societal response to disabled people, or that ideas about disability govern how characters are rendered in fiction and drama) I couldn't be content to study how to "fix" people and give them a "special" education. A few of the texts we were assigned in social science courses did discuss disability, but the topic appeared exclusively in chapters on abnormal psychology, or it was classified as "deviance" in sociology. With increasing confidence, I rejected these characterizations of my experience. Questions floated around in my head, but I could never latch onto an answer. Are there countries in which infanticide is still practiced, and if so on which children? Are economic or mystical beliefs given as reasons? Are those cultures more accepting of infanticide based on disability than on gender? Do sociology professors view institutionalization of people with disabilities as a rational practice to protect a vulnerable population, or is it understood as a discriminatory practice? Is there research on disabled people that is actually conducted by disabled people? What functions do disabled characters serve in the novels we were reading in my English and French literature courses, or the films seen in my film course? Why are those characters so often sad or peculiar? These things were never discussed in class. My Body Politic

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One of my psychology professors at Columbia was disabled, and he offered to supervise an independent study. We set up, but never carried out, a research project on health professionals' attitudes about disabled people. At our meetings, we would start off talking about my research, but inevitably we wound up sharing our feelings about the bleak picture painted by most theorists of disabled people's diminished capacity for psychological development and fulfillment. It was in my last semester at Columbia that I took the course in women's studies in the psychology department at Barnard, the women's college across the street, and conducted the interviews with disabled women. I began to tie together the two seemingly disparate domains-scholarship and personal experience. I don't think I had yet heard the phrase "the personal is the political," and I had certainly not encountered the more comprehensive idea that the personal is not only the political but the scholarly as well. The next year, 1977, I began a Ph.D. program in counseling psychology at New York University. Again, there was no mention of disability in any of my courses, and again I brought it into class discussion whenever possible. I was more convinced of its relevance by then, but still not very sophisticated or sure of myself. When I did raise questions, I was just responding to particular omissions, or errors in logic. I didn't have a framework to rely on that could provide an alternative to the depiction of disability in the curriculum. I did latch onto the ideas and the language ushered in in the early '8os, known as "People First" language. If we use the term "people with disabilities," rather than "handicapped" or "disabled people," the reasoning goes, it emphasizes that we are people who happen to have disabilities, but that it's not our defining characteristic. It seemed logical at the time. I often embellished by saying "women and men with disabilities," particularly in my work in sex education, to point out how my description differed from the neuter term "the handicapped." People First language served to minimize disability, keep it in its place. I think the idea was that if we sought to contain it, linguistically and theoretically, then the society would do that as well. This would facilitate integration and diminish discrimination. We would be seen more readily as whole, fully formed people with ideas and abilities, not just the weak who need care and services. Underlining our simi115

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larities would help erase our (all people's) differences and our (disabled people's) differentness. Throughout graduate school I relied on this idea, and used it as the premise for the lectures and workshops I was giving on sexuality and disability. This was an idea that Glenn and I utilized when we did presentations together, that we are people who have, as only one of our attributes and often not the most significant one, a disability. When we addressed sex educators and counselors in general service, we emphasized the need to extend their practice to the entire community. We spoke of the similarities among people, and urged these professionals to use what they already knew to serve a broader range of people, adding specialized techniques and knowledge only where necessary. Yet despite our efforts, these professionals rarely went on to work with disabled people. The omission of material on disability seemed particularly egregious in a doctoral program in counseling psychology. There were times that faculty members would actually say to me that if I was interested in working with disabled people I should be getting a degree in rehab. They didn't say it rudely or dismissively; they were merely echoing the idea perpetuated throughout the graduate and undergraduate curriculum that disability is a separator-its impact on people so unique, and the people who possess it affected in such specific ways, that only those specially trained in this area can work with us. I knew from my work with Sarah that this was not the case. Her understanding of my feelings of loss or my feelings of joy, or my irrational or clearheaded thoughts about my life as a disabled person, was not based on specialized training. She had none. Shortly after completing my doctorate I got a full-time teaching job in the psychology department at Baruch College. I loved my three years teaching there and then the eleven years at Hunter. The students were wonderful, and I gained so much being with them. It seemed that no matter what was going on in my life, my outside world rarely intruded when I was in the classroom. I'm sure that my mood or fatigue got the best of me at times, but I was glad to be where I was. At the beginning of my teaching career, I taught a range of general psychology courses, and in the last few years at Hunter, mostly graduate and undergraduate courses in child development in the teacher My Body Politic

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education program. I would bring disability subject matter into the classroom where I could, but I was rarely satisfied with my approach. Then, and even as late as 1997, the last year I taught full-time, the psych textbooks that I found rarely mentioned disability, or they presented it in a constricted way that only spoke of deficits or pathology. There was no social context, as was provided, although poorly, in discussions of race or gender. There was nothing to help students understand how particular physical, cognitive, sensory, and behavioral characteristics are interpreted and responded to. I would always add readings to my syllabus on disability and other relevant topics, but it often felt artificial, like I was appending something to an existing structure. I felt I had a limited impact on the way students were thinking about disability, or, for that matter, race, gender, or class. The multicultural!diversity movement was gaining attention by the late '8os, and I used some of that material in class, but almost all of the authors excluded disability from their analyses. During the years from 1985, when I began teaching, until the early '9os, I let go of disability. Pushed away from it. I focused on teaching general psych courses, and conducting research in a serviceable domain, the sort that tenure committees might appreciate. That changed when I encountered the field of disability studies. It is a social, political, cultural inquiry into disability, and functions very much like women's studies does to reframe the whole idea of "disability." Once I had learned about disability studies, it became, and has remained, the central focus of my work. I started to find answers for all those questions that had been buzzing in my head since I was an undergraduate. In 1992 I began teaching a course that was supposed to be on social and psychological aspects of disability for prospective counselors. Over time, though, I broadened the scope of the course in order to offer a more comprehensive look at disability and, in a number of respects, a more fundamental one. The listed course was designed to teach students about how disabled people feel, what determines those needs and feelings, and how counselors can respond. The traditional approach in such courses was that it is the disability itself that causes an individual to think and behave in certain ways. Further, ostracism of disabled people was considered a natural response to something that reminded people of human vulnerability and mortality. Yet what 117

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I felt students needed to talk about was how social structures, such as institutions, segregated special education and job discrimination bred antipathy and alienation. By the last few years that I taught the course, I abandoned textbooks and drew on material in anthropology, film, philosophy, literary criticism, political science, and poetry, infusing it all with a strong social and political perspective. My students were assigned to watch movies such as Coming Home, City Lights, The Men, Gattaca, and Twilight of the Golds. We read poetry and accounts of infanticide of disabled infants in select cultures. Over time, it became a course in disability studies, grounded in the liberal arts. It was around this time, somewhere in the early '9os, that I also began to use the term "disabled woman" to identify myself. I no longer said, "I am a woman with a disability"; instead I was likely to describe myself by forefronting disability. "I am a disabled woman," I would say, and then might explain to my students, "That means that I identify as a member of the minority group-disabled people-and that is a strong influence on my cultural make-up, who I am, and the way that I think." In my years teaching, I'm sure my disability wasn't insignificant to students, but its significance seemed to have more to do with their wish to understand the meaning I put on it, rather than a need to impose their own. Maybe because we got to know each other in a context in which my role as teacher overshadowed my personal characteristics, they needed to focus first on whether my exams were hard and what I expected of them, rather than on why I use a wheelchair. I'm sure they were curious, and some were probably uncomfortable. I would talk about disability in class when it seemed right, although I rarely talked about the cause of my impairment-the medical condition and that history-but would readily discuss obstacles I'd encountered or experiences I'd had. What I said depended on which class or which group of students, as well as my mood. In the courses I taught on disability, I did actively "use" my disability and talked more openly about my experience. I didn't start off with, and sometimes never mentioned, the reason I use a wheelchair, but when talking about the discrimination disabled people face, I would mention particular attitudes I'd encountered, obstacles to travel or access to the places I want and need to go and how that feels. My Body Politic

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If someone asked me a direct question about my impairment, which they did sometimes, I answered it, but if I initiated the discussion, I was more likely to focus on my identity as a disabled woman, and my alliance with other disabled people and what that means to me. By the time we were talking about these things, I had already spent time critiquing the traditional view of disability: the idea that disability is a deficit, simply a medical condition best responded to in a medical context. My focus in these courses was on the history of ideas about disability. What brings us to think about and respond to disabled people the way we do? Let's consider how the books we read, movies we watch, the news that is reported instruct us to think about disability. Let's look at how ideologies of the past continue to influence who is considered fit and who is not. For instance, have American notions of progress closed us off to the inevitability of human variation, fallibility, and imperfection? Did the advent of modernism make demands for certain kinds of rationality and order that privilege nondisabled people? Did that thinking influence the institutionalization and segregation of disabled people? These were graduate students in counseling and rehab, mostly women, and anywhere from twenty-five to sixty years old. There were very few disabled students over the years, but they contributed a great deal to the class. There was usually a fair balance of African American, White, and Latino students and a smaller number of Asian Americans. We talked a great deal about ostracism and segregation. As they were preparing to be counselors, we talked about how these experiences influence disabled people's sense of self-worth. But we would also talk about how ostracism is so often viewed as a natural, inevitable response to disability. It is said that disability makes nondisabled people anxious. Yet what is usually not discussed is whether those reactions really are inevitable. What situations allow those feelings to flourish? What is morally wrong with such ostracism, and what is undemocratic about such segregation? What can we do to change people's response, or show them it is unacceptable to act on such feelings? Can integrated communities, schools, and work environments alter such behavior? It was often the students who made the connections among issues 119

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of race, gender, class, sexual orientation, and disability. Once I had proposed the idea that disability is best understood as a designation that has social and political significance, once we had explored the limitation of viewing disability simply as a medical category, they were off and running. I would say to them: If I want to go to vote or use the library, and these places are inaccessible, do I need a doctor or a lawyer? I might ask: What if Sandra-speaking of a student in the front row who is blind-was denied an accommodation by a professor? Let's say he or she refused to let her take an exam in a separate room with a reader. What good would a medical explanation of her blindness do for Sandra? The students easily recognized, and taught me a great deal about, how disability functions like race and gender to set people apart, to restrict opportunity, to designate certain social roles and obligations. Those were exhilarating moments for me. The times when the ideas drove the class, not the procedure. I stopped lecturing, students stopped raising their hands to respond to a specific question, and I didn't need to call on anyone. They got heated up and argued, and went off on tangents, in wonderfully messy, chaotic exchanges that could sometimes bring me to the verge of tears. I saw in those moments how big disability is, not the condition I or others have, but the elaborately constructed network of ideas and practices that keep disabled people in place. When the students shared my outrage, I felt at my most authoritative. What was important to me was, at least for that moment, important to them, and I had authority, not because I was the teacher and have a Ph.D., but because of my commitment to the position: "disabled woman." I think, too, they could see that I had gotten to this place not by denying my disability or, implausibly, "overcoming" it, but by sailing headlong into it. Making sense of it had become the most meaningful thing I could do.

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[4] Critiquing the social model Tom Shakespeare

Few new truths have ever won their way against the resistance of established ideas save by being overstated. Isaiah Berlin, Vico and Herder (Berlin, 2000)

Introduction

The social model of disability has been called 'the big idea' of the disability movement (Hasler, 1993). To many, it appears to be the fundamental political principle which both first initiated and now sustains the disability rights challenge. For these advocates, to abandon the social model would be to abandon the whole edifice of disability rights and disability equality. Yet the social model itself is a very simple and brief statement which turns the traditional definition of disability on its head. As the UPIAS activists argued: In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society. (UPIAS, 1976: 3) The benefits of the social model approach are that it shifts attention from individuals and their physical or mental deficits to the ways in which society includes or excludes them. The social model is social constructionist or, as Michael Oliver ( 1990) prefers, social creationist, rather than reductionist or biologically determinist. Rather than essentialising disability, it signals that the experience of disabled people is dependent on social context, and differs in different cultures and at different times. Rather than disability being inescapable, it becomes a product of social arrangements, and can thus be reduced, or possibly even eliminated. The redefinition of disability in the social model parallels the feminist movement's redefinition of women's experience in the early 1970s. Anne Oakley (1972) and others had distinguished between sex- the biological difference between male and female - and gender, the socio-cultural distinction between men and women,

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or masculine and feminine. The former was biological and universal, the latter was social, and specific to particular times and places. Thus it could be claimed that sex corresponds to impairment, and gender corresponds to disability. The disability movement was following a well-established path of de-naturalising forms of social oppression, demonstrating that what was thought throughout history to be natural was actually a product of specific social relations and ways of thinking. The social model was crucial to the British disability movement for two reasons. First, it identified a political strategy: barrier removal. If people with impairments are disabled by society, then the priority is to dismantle these disabling barriers, in order to promote the inclusion of people with impairments. Rather than pursuing a strategy of cure or rehabilitation, it is better to pursue a strategy of social transformation. In particular, if disability could be proven to be the result of discrimination (Barnes, 1991 ), then campaigners for anti-discrimination legislation saw civil rights - on the model of the Americans with Disabilities Act, and the British Equal Opportunities and Race Relations laws - as the ultimate solution. The second impact of the social model was on disabled people themselves. Replacing a traditional deficit approach with a social oppression understanding was and remains very liberating for disabled individuals. Suddenly, people were able to understand that it was society which was at fault, not themselves. They didn't need to change: society needed to change. They didn't have to be sorry for themselves: rather, they could be angry. Just as with feminist consciousness raising in the 1970s, or with lesbians and gays 'coming out', so disabled people began to think of themselves in a totally new way, and to become empowered to mobilise for equal citizenship. Rather than a demeaning reliance on charity, disabled activists could now demand their rights. In academia, the social model opened up new lines of enquiry. Whereas the medical sociology of disability had traditionally investigated issues such as individual adjustment to impairment and explored the consequences of impairment for identity, the social model inspired researchers in the new field of disability studies to tum their attention to topics such as discrimination, the relationship between disability and industrial capitalism, or the varying cultural representations of people with impairment. The social model enabled the focus to be widened from studying individuals to exposing broader social and cultural processes. Disability studies consciously emulated the precedents of Marxism, feminism, lesbian and gay studies and post-colonial studies which had all asked new questions and generated new insights and evidence on the basis of an overt political affiliation with social movements of liberation. This brief sketch signals how real and how widespread the benefits of the disability rights movement have been in Britain. The Disability Discrimination Act of 1995 and its successors, the removal of barriers to access, the development of independent living and direct payments, have all begun to transform British society. Given that, in Britain, disability rights and disability studies have up to this point been inseparable from the social model concept, then clearly credit has to be paid to the mobilising power and strategic impact of the social model redefinition of

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disability. Activists created the social model, which inspired new generations of activists, who fought for the structural changes which the social model mandated. It is impossible to know whether the British disability movement would have moved so far, or so fast, in the absence of the social model. Certainly, disability rights in other countries have progressed just as quickly, and in some cases rather further, in the absence of the strong version of the social model. As I argued above, this suggests that while a social approach to disability may be indispensable, it does not have to take the particular form of the British social model. Indeed, the strength and simplicity of the social model of disability has created as many problems as it has solved.

The political dangers of the social model of disability Perhaps only the most powerful counter-claim could have effectively dislodged the deep seated idea that disabled people are defined by their incapacity. So from one extreme- the cultural assumption that disability is equated with dependency, invalidity and tragedy - the disability movement swung to another - the political demand that disability be defined entirely in terms of social oppression, social relations and social barriers. From seeing disability as entirely caused by biological deficits, the radical analysis shifted to seeing disability as nothing whatsoever to do with individual bodies or brains. This unprecedented movement to tum traditional views of disability upside down appears, several decades later, to be one of the bravest and most trans formative moves in the history of political thought, because it goes against deep-seated intuitions and appears to defy logic. However, consistently applied, the social model created entailments which generated problems both at the political and the conceptual level. Here are some of the difficulties which arise from the implications of the social model:

2

If disabled people share a common experience of oppression, regardless of impairment -just as black people share a common experience of racism, regardless of ethnic origins - then to organise or analyse on the basis of impairments becomes redundant. Both impairment-specific organisations whether traditional charities, or modem self-help groups (see for example Hurst, 1995) - and impairment-specific responses become problematic. Michael Oliver argues that 'the social model is incompatible with taking an impairment specific approach to disabled people' (Oliver, 2004: 30). The only exception Oliver concedes is the need for specific services for Deaf people. It should be noted that Finkelstein (200 1) differs from Oliver on this point. If disability is about social arrangements, not physical or mental impairments, then attempts to mitigate or cure medical problems may be regarded with intense suspicion. They will appear to be irrelevant or misguided responses to the true problem of disability, and distractions from the work of barrier removal and civil rights.

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3

If disability is not to be understood in terms of individual experiences, but as the product of structural exclusion, then the number of disabled people no longer becomes relevant. The imperative for social change and disability provision is to remove environmental and social barriers, rather than to meet the special needs of impaired individuals. Thus it is not necessary to survey the impaired population, nor to know how many people there are with each form of impairment.

Rejection of single-impairment organisations, of medical interventions, and of surveys of disabled people were all persistent features of the UK disability movement in the 1980s and 1990s. This seems to be evidence of how rigid social model thinking became problematic and counter-intuitive. There appears to be no intrinsic reason why a single-impairment organisation might not be progressive and helpful, given that people with different impairments experience specific issues and problems, both medical and social. Nor is it logical to think that a focus on social barriers necessitates a neglect of medical intervention. To accept- or even to prioritise - wider structural change does not necessitate the abandonment of medical research or clinical interventions. Finally, understanding the number of disabled people in society would seem to be important for many different areas of social policy in the real world of budgetary constraints and service planning. For example, an inclusive school system would need to provide special needs assistants for disabled pupils, and therefore it would be important to understand how many people inight need those services. Fully including Deaf people would require provision of sign language interpreters, and therefore it would be necessary to know how many Deaf people are present in a particular locality in order to provide enough interpreters (Harris and Bamford, 2001 ). Surveying any social category necessitates a potentially arbitrary definition of the population being counted, and in that sense, an unavoidable circularity results: the numbers found are an artefact of the definition used (Abberley, 1992). Yet the constructed nature of the disability category does not mean that there is no point in such surveys, simply that each survey can only be understood in terms of the purposes for which it was intended and the definition of a disabled person on which it relies. These cases are examples of the way that the social model of disability has become a kind of litmus test, by which disability activists assess interventions. If an initiative or organisation appears to contradict the social model, it must be rejected as inappropriate, misguided or even oppressive. The simplest form of this 'disability correctness' arises from basic terminology: the social model mandates the term 'disabled people', because people with impairment are disabled by society, not by their bodies. The phrase 'people with disabilities' becomes unacceptable because it implies that 'disabilities' are individual deficits. Those who refer to 'people with disabilities' are thus adopting the 'medical model' and must be reeducated or repudiated. For example, in the late 1990s the UK Government promoted an awareness campaign intended to challenge discrimination and promote inclusion. A series of

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posters of high-achieving disabled people each included the strap line 'See the person not the disability'. The UK disability movement rejected the publicity campaign, largely because it used the term 'disability' to refer to physical impairment (for example Findlay, 1999: 7). There may have been relevant and appropriate criticisms to be made of the 'See the person' campaign. After all, discrimination against disabled people is more than a matter of negative attitudes, and better marketing of disabled people does not seem an adequate response to deep-seated poverty and social exclusion. Yet the disability movement was in danger of giving the impression that the main problem with the Government's approach was that they adopted 'incorrect' terminology. Many who use the phrase 'people with disabilities' do so because they are striving to be respectful and supportive of disability rights and social inclusion. Rather than defining someone in terms of their impairments, they choose 'people first' terminology to express the common humanity which disabled people share. In other words, while terminology is important, it is not as important as underlying values. Quibbling over 'disabled people' versus 'people with disabilities' is a diversion from making common cause to promote the inclusion and rights of disabled people.

The unchanging social model There are several reasons why the social model has now become an obstacle to the further development of the disability movement and disability studies. These reasons are not external to the social model, but intrinsic to its success: the strengths of the social model are also its weaknesses. First, the social model began as the definitions which underpinned a set of practical political positions, from where it became simplified into a series of memorable slogans such as 'disabled by society, not by our bodies'. Developed by ordinary activists, whom Oliver ( 1990) celebrates as 'organic intellectuals', it was intended to be a political intervention, not a social theory. Politics requires simple and emotionally powerful phrases. The social model was ideally suited to this purpose: it could be explained very quickly, and its implications were obvious and life-transforming. Second, the social model was developed and promoted in the context of identity politics. For disabled people, the social model was important not just because it highlighted what needed to be changed- the barriers and prejudices and discriminations which they faced daily in their lives - but also because it provided the basis for a stronger sense of identity. Rather than feeling ashamed of impairment, activists could deny that impairment was relevant to their situation. In other words, activists had a strong psychological and emotional attachment to the social model analysis, which became incorporated into their sense of self. Third, the social model was first devised in the 1970s. It was developed in academic form in the publications of Vic Finkelstein (1980) and Michael Oliver (1990). It was promoted through the work of Colin Barnes (1991) and successive waves of disability studies scholars. Yet at no point in the past thirty years has

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the social model been developed or revised or rethought. Over and again, the dominant voices of disability studies and the disability movement have reiterated that the fundamental principles of the social model are correct and indispensable (Finkelstein, 2001; Oliver, 2004). Other social movement ideologies such as feminism have developed over time, have contained multiple different interpretations and emphases, have responded to criticism and have changed to respond to the changing circumstances, while retaining underlying values. Alone amongst radical movements, the UK disability rights tradition has, like a fundamentalist religion, retained its allegiance to a narrow reading of its founding assumptions. The goals of the disability movement have always been to promote disability equality and the inclusion of disabled people in society. There is no need for these goals to change. However, the social model is only a means to this end and, as such, it should be revised or replaced if it becomes outdated. There are three central reasons why I now believe that this is the case.

The impairment/disability distinction The distinction between impairment and disability lies at the heart of the social model. It is this distinction which separates British disability rights and disability studies from the wider family of social-contextual approaches to disability. Impairment is defined in individual and biological terms. Disability is defined as a social creation. Disability is what makes impairment a problem. For social modellists, social barriers and social oppression constitute disability, and this is the area where research, analysis, campaigning and change must occur. At first glance, many impairment/disability distinctions appear straightforward. If architects include steps in a building, it clearly disadvantages wheelchair users. Sensory impairments can be remedied by social arrangements such as sign language interpreters, or information in alternative formats. Yet looking closer, the distinction between biological/individual impairment, and social/structural disability is conceptually and empirically very difficult to sustain. Impairments, even sensory impairments, can cause discomfort (Corker and French, 1999: 6). Pain itself is generated through the interplay of physiological, psychological and socio-cultural factors and thus the individual experience can never be separated from the social context (Wall, 1999). There can be no impairment without society, nor disability without impairment. First, it is necessary to have an impairment to experience disabling barriers. Impairments may not be a sufficient cause of the difficulties which disabled people face, but they are a necessary one. If there is no link between impairment and disability, then disability becomes a much broader, vaguer term which describes any form of socially imposed restriction. Second, impairments are often caused by social arrangements (Abberley, 1987). For example, a considerable proportion of the global burden of impairment is generated by poverty, malnutrition, war and other collectively or individually imposed social processes. Paul Abberley used this argument to try and deal with

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the problem of impairment by suggesting that impairment itself could be conceptualised as socially created. Yet because not all impairment is caused by social arrangements, the argument works not to bolster but to undermine the social model. Moreover, impairments are often exacerbated by social arrangements. Environmental and social barriers make impairments worse, both through action and omission. In the first case, having to negotiate physical obstacles, or use badly designed seats or toilets or transport puts people at risk, and may cause pain or injury. In the second case, individuals might experience pain or other symptoms which could be alleviated by drugs or therapies, which are unavailable due to particular prescribing regulations, or to lack of income, or rationing. In each of these cases, are the problems to be defined as socially imposed restriction of activity, or as impairment effects? If social provision was improved, the restriction might disappear, or at least be minimised. But if it wasn't for the impairment, there wouldn't be any restriction in the first place. The problem arises out of the combination of impairment effects and social restrictions. Third, what counts as impairment is a social judgement. The number of impaired people depends on the definition of what counts as an impairment. The meaning of impairment is a cultural issue, related to values and attitudes ofthe wider society. The visibility and salience of impairment depend on the expectations and arrangements in a particular society: for example, dyslexia may not become a problem until society demands literacy of its citizens. What these examples show is that impairment is always already social, while disability is almost always intertwined with impairment effects. Impairment is only ever experienced in a social context. When is a restriction of activity not a social restriction of activity? If disability is defined as social, while impairment is defined as biological, there is a risk of leaving impairment as an essentialist category. Impairment is not a pre-social or pre-cultural biological substrate (Thomas, 1999: 124), as Tremain (2002) has argued in a paper which critiques the untenable ontologies of the impairment-disability and sex-gender distinctions. The words we use and the discourses we deploy to represent impairment are socially and culturally determined. There is no pure or natural body, existing outside of discourse. Impairment is only ever viewed through the lens of disabling social relations. As a crude example, one could cite the labels used to describe a particular impairment: idiocy, mongolism, Down syndrome, trisomy-21 are words which have been used to describe the same impairment situation, yet their connotations differ, as does a generic term such as person with learning difficulties, which might be preferred by many people with that condition Here, the comparison with feminism is instructive. The early 1970s distinction between sex and gender has been widely criticised by feminist theorists for creating a dangerous dualism of social gender and biological sex. Scholars such as Judith Butler (1990) who have abandoned the sex/gender distinction do not do so in order to return to the traditional idea that woman's being is biological. Instead, it is observed that sex itself is already social. John Hood-Williams concludes his discussion of the problems of dualism by saying:

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The sex/gender distinction dramatically advanced understanding in an undertheorised area and, for over twenty years, it has provided a problematic which enabled a rich stream of studies to be undertaken, but it is now time to think beyond its confines. (Hood-Williams, 1996: 14) The same, surely, applies to impairment. In practical terms, the inextricable interconnection of impairment and disability is demonstrated by the difficulty in understanding, in particular examples, where the distinction between the two aspects of disabled people's experience lies. While theoretically or politically it may appear simple to distinguish impairment from disability, qualitative research has found it very difficult to operationalise the social model because it is hard to separate impairment from disability in the everyday lives of disabled people. For instance, Carol Thomas and Donna Reeve have been pioneers in exploring 'socially engendered undermining of psycho-emotional well being'. For them, this is about extending the social model to show how it is inter-personal encounters and social relations which cause problems, not just physical or economic barriers. This is a helpful development. But, of course, illness and impairment also undermine psycho-emotional well-being. Having a spinal chord injury or being diagnosed with a degenerative condition can cause depression, anxiety and problems with self-esteem. Thus a person with an impairment may at the same time experience socially engendered psycho-emotional problems, and impairment engendered psycho-emotional problems. In practice, how easy would it be to distinguish between those two causes of mental distress? For example, consider a person with multiple sclerosis. She might be experiencing psycho-emotional effects for a number of reasons:

2 3 4

5 6

She may be in pain or suffering other physical symptoms and limitations. She may experience depression as one of the symptoms of the neurological condition itself. She may be experiencing negative reactions from her family, friends and employers, which cause her anger and distress. She may be distressed at the prospect of a disease which will limit her life. This distress may be made worse by the negative cultural representations of MS. She may be experiencing social barriers which make her daily life more of a struggle. She may have other reasons for distress which are unconnected with either the impairment, or the social reaction to it: for example, her cat may have died.

As this individual presents her feelings, how easy it to distinguish the effects of impairment from the effects of disablement (whether defined as barriers or oppression)? What sense would it make to distinguish these different factors in the

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complexity of an individual psyche? How does 'distress at the prospect of a limiting disease' shade into 'distress at the prospect of a limiting disease which is represented culturally as a fate worse than death'? Could the contribution of the different factors be separated and quantified? It seems likely that the different factors would be inextricably linked, compounding each other in a complex dialectic. One research project which encountered the difficulty of sustaining the impairment/disability distinction was the doctoral project of Mark Sherry, based on qualitative interviews with people who experienced acquired brain injury (2002). Following a social model approach, Sherry attempted to distinguish between the effects of the injury and the role of barriers or oppression. Yet he was left with a residuum of experiences which could not be classified as either 'impairment' or 'disability' and which he discussed in a chapter called, after Lyotard, 'Different perspectives'. Sherry concluded that impairment and disability experiences and identities were best conceptualised as a fluid continuum, not polar dichotomy. Another was the study of Locket al. (2005) which took a social model approach to exploring the experience of stroke survivors, finding, 'Predictably, the social model focus on social barriers and social oppression proved to some extent incompatible with the exploration of stroke survivors' experiences' (Locket al. 2005: 34). Their initial focus group data found that respondents experienced impairment effects. 'Difficulties with memory, processing information, speech and language, vision, walking, using the dominant hand and the effects offatigue were all reported as barriers to employment' (Locket al., 2005: 43). But of course, they also experienced various disabling barriers: Stroke survivors and partners in the focus groups saw their impairments as barriers to work. However, impairments were generally seen as just one element within a complex constellation of actors that act and interact to influence work reintegration. (Locket al., 2005: 43) Another example is offered by Helen Lester and Jonathan Tritter's research with people with serious mental illness: while the authors endorse a social model perspective, their data shows that respondents found it impossible to ignore their impairment and the impact of what 'embodied irrationality'. However, social situations and professional attitudes exacerbated symptoms- what the authors called 'the elision of embodied irrationality and disability' (Lester and Tritter, 2005: 662). My interpretation of these research studies is that they show the interpenetration of impairment and disability, rather than simply endorsing the social model perspective. In fact, I would argue that any qualitative research with disabled people will inevitably reveal the difficulty of distinguishing impairment and disability (Watson, 2002, 2003). In responding to criticisms of the social model, Mike Oliver has sought to deal with the problem of impairment by arguing that a social model of impairment is needed alongside the social model of disability ( 1996: 42). While his recognition

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of the importance of impairment, and the limitations of the social model, is welcome, it would be neither straightforward nor desirable to make such a distinction, because impairment and disability are not dichotomous. It is difficult to determine where impairment ends and disability starts, but such vagueness need not be debilitating. As I will argue in the next chapter, disability is a complex interaction of biological, psychological, cultural and socio-political factors which cannot be extricated except with imprecision.

The importance of impairment It is not individual limitations, of whatever kind, which are the cause of the

problem, but society's failure to provide appropriate services and adequately ensure the needs of disabled people are fully taken into account in its social organisation. (Oliver, 1996: 32) The social model defines disability in terms of oppression and barriers, and breaks the link between disability and impairment. This has led to the common criticism that social model approaches have neglected the role of impairment. For example, in her book Pride Against Prejudice (1991) Jenny Morris discussed features of disability which had been neglected by the dominant, UPIAS-inspired ideology of the British disability movement: culture, gender, personal identity. Most importantly, she acknowledged that impairment itself created pain and difficulties which were not solely attributable to disabling factors in society: While environmental barriers and social attitudes are a crucial part of our experience of disability - and do indeed disable us - to suggest that this is all there is to it is to deny the personal experiences of physical and intellectual restrictions, of illness, of the fear of dying. (Morris, 1991: 10) Throughout her book Morris uses disability interchangeably to stand for both social barriers and individual restriction. Following this lead, in 1992 Liz Crow published a paper in Coalition, the journal of the Greater Manchester Coalition of Disabled People (subsequently published as Crow, 1996) in which she criticised the social model for failing to encompass the personal experience of pain and limitation which is often a part of impairment. While she expressed commitment to the social model itself, she called for it to be developed in order to find a place for the experience of impairment. She suggested, '[i]nstead of tackling the contradictions and complexities of our experiences head on, we have chosen in our campaigns to present impairment as irrelevant, neutral and, sometimes, positive, but never, ever as the quandary it really is' (Crow, 1996: 208). Crow did not suggest that impairment was an explanation for disadvantage, but instead that it was an important aspect of disabled people's lives:

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As individuals, most of us simply cannot pretend with any conviction that our impairments are irrelevant because they influence every aspect of our lives. We must find a way to integrate them into our whole experience and identity for the sake of our physical and emotional well-being, and, subsequently, for our capacity to work against Disability. (Crow, 1992: 7) In the 1993 Open University course book, Disabling Barriers, Enabling Environments, Sally French also wrote an important and careful article about the persistence of impairment problems, saying, 'I believe that some of the most profound problems experienced by people with certain impairments are difficult, if not impossible, to solve by social manipulation,' (French, 1993: 17). As a person with visual impairment, she gave the example of being unable to recognise people, and failure to read non-verbal cues in interaction, explaining how these aspects of being a visually impaired person caused problems interacting with neighbours and with her students. According to French, no amount of barrier removal or social change could entirely remedy or remove the problem of visual impairment. French also explored the reasons for resistance to these alternative perspectives: It is no doubt the case that activists who have worked tirelessly within the

disability movement for many years have found it necessary to present disability in a straightforward, uncomplicated manner in order to convince a very sceptical world that disability can be reduced or eliminated by changing society, rather than by attempting to change disabled people themselves. (French, 1993: 24) Most recently, Carol Thomas (1999), from within the materialist social model tradition, has developed an approach to disability which makes space for the exploration of personal experience, of the psycho-emotional dimensions of disability, and for the impact of what she calls 'impairment effects'. She uses the latter concept 'to acknowledge that impairments do have direct and restricting impacts on people's social lives' (Thomas, 2004b: 42). All of these writers have argued from within a social model perspective, calling for reform or development of the model, rather than its abandonment. Nevertheless, many of these critical voices have encountered strong opposition from within the British disability movement and disability studies. Indeed, there has been an implicit tendency to deny the reality of impairment: for example, Dan Goodley seeks to cast doubt on the existence of learning difficulties; 'social structures, practices and relationships continue to naturalise the subjectivities of people with "learning difficulties", conceptualising them in terms of some a priori notion of "mentally impaired'" (Goodley, 2001: 211 ). Advocates frequently use scare-quotes and phrases such as 'labelled with learning difficulties'. The BCODP briefing document on the social model refers to 'barriers encountered by people who are viewed by others as having some form of

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impairment' (British Council of Disabled People, n.d.). Michael Oliver talks of 'people who are viewed by others as having some form of impairment' (Oliver, 2004). Mental health campaigners use the terminology 'survivors of the mental health system': The construct of 'mental illness' is part of a modernist project which devalues the diversity of human experience and perceptions and is preoccupied with analysis, eradication, physicality and mechanical and chemical constraint, rather than understanding, empathy, support and an holistic approach to body and self. (Beresford and Wall craft, 1997: 71) While attention to labelling and discourse is important, there is a danger of ignoring the problematic reality of biological limitation. Linguistic distancing serves as a subtle form of denial. There are a number of reasons why it might be important for disability studies to engage with impairment:

2

3

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Disability studies should pay attention to the views and perspectives of disabled people, rather than accepting medical claims about the nature and meaning of impairment. Many respondents say that impairment is a central and structuring part of their experience. Disability studies should be concerned with medical responses to impairment. Is treatment effective? Are there side effects? Is research funded effectively? Does the National Health Service prioritise disabled people's impairment needs? Disability studies should be concerned with the prevention of impairment. If there is an interest in the quality of life of disabled people, then this includes minimising the impact of impairment and impairment complications. Disabling barriers both cause and exacerbate impairment. For example, poverty and social exclusion make impairment worse and create additional impairments, particularly risk of mental illness.

Rachel Hurst (2000) makes a familiar comparison of disability to gender, claiming that just as it would be inappropriate to analyse details of women's biology in political debates, so there is no need to analyse individual characteristics of disabled people- 'to concentrate on the personal characteristics of the disabled individual and the functional limitations arising from impairment is itself, disablism' (Hurst, 2000: 1084). It is common to hear such analogies being made between the experiences of disabled people and those of women, minority ethnic communities and lesbians and gays (for example, Gordon and Rosenblum, 2001 ). For example, Carol Thomas sees the concept 'disablism' as on a par with concepts such as sexism, racism and homophobia. The term 'disablism' has also been deployed by the disability charity, Scope. Perhaps alarmed at being the target of the Direct

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Action Network and other disabled rights campaigners, Scope has recently adopted a more radical position, and its campaign 'Time to get equal' is evidence of this. Scope defines 'disablism' as 'discriminatory, oppressive or abusive behaviour arising from the belief that disabled people are inferior to others'. There is an implicit borrowing here from the celebrated definition of institutionalised racism in the Macpherson Report after the death of the black teenager Stephen Lawrence, which included the phrase, 'processes, attitudes and behaviour which amount to discrimination through unwitting prejudice, ignorance, thoughtlessness and racist stereotyping'. But is the analogy between different movements and oppressions meaningful? As social movements, women's liberation, gay rights, disability rights and antiracism are similar in many ways. Each involves identity politics, each challenges the biologisation of difference, each has involved an alliance of academia and activism. There are parallels between the theorisation of disability, and the theorisation of race, gender and sexuality, as the many citations of other oppressions within disability studies literature demonstrate. Yet the oppression which disabled people face is different from, and in many ways more complex than, sexism, racism and homophobia. Women and men may be physiologically and psychologically different, but it is no longer possible to argue that women are made less capable by their biology. 'Gender, like caste, is a matter of social ascription which bears no necessary relation to the individual's own attributes and inherent abilities' (Oakley, 1972: 204). Similarly, only racists would see the biological differences between ethnic communities as the explanation for their social differences. Nor is it clear why being lesbian or gay would put any individual at a disadvantage, in the absence of prejudice and discrimination. But even in the absence of social barriers or oppression, it would still be problematic to have an impairment, because many impairments are limiting or difficult, not neutral. Comparatively few restrictions experienced by people with impairment are 'wholly social in origin'. If someone discriminated against disabled people purely because they had an impairment, and imposed exclusions which were solely on this basis and nothing to do with their abilities, then this would be a wholly social restriction. Examples clearly exist of this form of discrimination: nightclubs which exclude disabled people because they cater only to attractive young people; the notorious 'ugly laws' in early twentieth century Chicago and elsewhere which prohibited disfigured people from public spaces. Here, disability discrimination parallels racism, sexism and other social exclusions exactly. But in most cases, disabled people are experiencing both the intrinsic limitation of impairment, and the externally imposed social discrimination. When disabled people are equated with other historically oppressed groups in a simplistic way, it leads to conclusions which are unwarranted. For example, in her introduction to an important North American collection about disability research, Marcia Rioux argues that once disability is seen as a citizenship issue, traditional research has to change:

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The underlying assumption of the lack of status of persons with disabilities has promoted, or at minimum left unquestioned, the funding and undertaking of research that would be ethically and legally unacceptable if it involved other groups. Studying the genetic make-up of people from non-white racial groups is sceptically viewed. Research into genetic engineering that could be used to prevent female children is sceptically viewed[ ... ] Disability ought not to provide a rationale for research that is unacceptable for other groups in society. (Rioux, 1994: 6) The implication of the comparison is that genetics is as irrelevant to disabled people as it is to women and non-white ethnic minorities. But this is surely wrong. Unlike the comparator groups, disabled people often experience major disadvantages as a result of their genetic endowment, whereas members of other historically oppressed communities experience either minimal or non-existent biological disadvantages. For a few disabled people, their genetic condition is the most salient aspect of their entire existence. To take another example, if women or black people have higher rates of unemployment than men or white people, then the explanations might include direct barriers - discrimination by employers - and indirect barriers caused by women and black people lacking appropriate qualifications, training or confidence. However, labour market statistics (Smith and Twomey, 2002) which show that 48 per cent of disabled people of working age are in work compared to 81 per cent of non-disabled people are harder to interpret. Is this disadvantage caused solely by external barriers, or additionally by the particular problems associated with impairment? The 20 per cent of disabled people whose impairments do not limit the kind or amount of work they can do, do not seem to face discrimination. In fact, they are substantially less likely to be unemployed than non-disabled people. The people who are least likely to be working are those with mental illness, of whom only 18 per cent are in work, and those with learning difficulties, of whom only 21 per cent are in work. Some of this can be explained by discrimination, or by the failure of employers to adapt working arrangements to include people with mental illness or learning difficulties. But some of it is because many people with learning difficulties are very limited in the work they can do, and many people with mental health problems find it difficult to cope with regular, stressful work. The implications of these examples is that impairment often has explanatory relevance in ways that the colour of someone's skin, or their sex, or their sexual orientation usually does not. If social model approaches fail to allow for the role of impairment, they will fail to understand the complexities of disabled people's social situation. Moreover, disability rights academics and activists risk creating stories about disability which many disabled people will not recognise as describing their own experience. As disabled feminists have argued, impairment is an important part of the disability experience. Impairment affects individuals in different ways. Some people are comparatively unaffected by impairment, or else the main consequences of impairment arise from other people's attitudes. For

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others, impairment limits the experiences and opportunities they can experience. In some cases, impairment causes progressive degeneration and premature death. These features of impairment cause distress to many disabled people, and any adequate account of disability has to give space to the difficulties which many impairments cause. As Simon Williams has argued, 'endorsement of disability solely as social oppression is really only an option, and an erroneous one at that, for those spared the ravages of chronic illness' (Williams, 1999: 812). Of course, impairment may also lead to opportunities: for example, to experience the world in a different way, or to develop one sense or aptitude because others are unavailable. Moreover everyone, even the supposedly able-bodied, experiences limitations: it's not just the wheelchair user who is unlikely to climb Everest. It is not necessary to claim that all impairments are negative, or that impairment is only and always negative. But for many, impairment is not neutral, because it involves intrinsic disadvantage. Disabling barriers make impairment more difficult, but even in the absence of barriers impairment can be problematic.

Limitations of the barrier-free world In his 1980 monograph developing the social model approach pioneered by UPIAS, Vic Finkelstein wrote: Once social barriers to the reintegration of people with physical impairments are removed, the disability itself is eliminated. The requirements are for changes to society, material changes to the environment, changes in environmental control systems, changes in social roles, and changes in attitudes by people in the community as a whole. (Finkelstein, 1980: 33) Finkelstein (1981) created a powerful fable describing a hypothetical village in which all the inhabitants are wheelchair users, to illustrate the change of emphasis in the barrier philosophy. Everything is adapted to the villagers' needs, and consequently they are not disadvantaged. In other words, they are people with impairments, but not disabled people. When able-bodied people visit the village, it is they who face problems adapting to the environment. They feel excluded, and they experience physical and psychological difficulties. The fable is a powerful summary of the philosophical change which UPIAS demanded, in the form of what would be later known as the social model of disability. This focus on barriers was carried through into the Open University reader edited by John Swain and colleagues and entitled Disabling Barriers, Enabling Environments, and into many documents of the disability rights movement. The global goal of disabled people is a barrier-free world in which disabled people are included, not excluded. In practical terms, the barrier removal mission has radically changed the environment in those countries which have most fully adopted the disability rights critique: for example the United States of America, where barrier removal

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was mandated by the 1973 Rehabilitation Act section 504 and the 1990 Americans with Disabilities Act. At a slower pace, countries such as the United Kingdom have followed suit. The barrier removal philosophy underpins the notion of Universal Design, defined by Ron Mace and others as: The design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design. (Centre for Universal Design, 1997) The principles of Universal Design were developed by architects, designers and engineers. For example, users should not be stigmatised or segregated: the same means of use should be provided for all users; information should be in multiple formats and accessible to all; design should be usable with low physical effort; size and space should be appropriate for users with different body sizes, seated or standing. Rob Imrie (2004) has welcomed the development of Universal Design, while expressing caution about its limitations: for example, social and economic relations play a major role in disabling people, and it is not enough to address buildings and products without addressing money and power. Despite Finklestein's fable and the development of Universal Design, limited conceptual work has been done on the concept of the barrier-free world. There are so many obvious barriers yet to be removed, that perhaps it has not seemed necessary to think too hard about what the inclusive environment might look like, when the utopia is finally achieved. But thinking about a barrier-free utopia is vital for those seeking to conceptualise disability, because the social model is predicated on the assumption that it is possible to remove the barriers which disable people with impairment (although of course the philosophy of barrier removal is not limited to social model perspectives, being present in most social-contextual accounts of disability). Ironically, the very success of many developed nations in developing inclusive public spaces may provide new evidence that the barriers model is not a sufficient explanation of disability. First, as the obvious and unnecessary barriers are removed, the more stubborn and complex exclusions are left in greater relief, and the deeper moral and political questions about priorities and cost-effectiveness become starker. Second, if disabled people remain poor and disadvantaged, despite social and environmental change, then it suggests that a civil rights or social model philosophy may not be the full solution to the problem of disability. For example, while the United States of America has strong civil rights legislation, which has mandated the most accessible environment in the world, disabled Americans remain disproportionately poor, and many are forced to live in segregated nursing homes (Russell, 2002). Perhaps it is unfair to judge the social model approach on the validity of the concept of the barrier-free world. After all, the social model is about more than physical environments. The BCODP states that

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the barriers disabled people encounter include inaccessible education systems, working environments, inadequate disability benefits, discriminatory health and social support systems, inaccessible transport, houses and public buildings and amenities, and the devaluing of disabled people through negative images in the media. (British Council of Disabled People, n.d.) Architectural and communications barrier removal is often easier than the removal of social and economic barriers. Progress on many of these latter issues has been much slower to achieve, which may explain the persisting poverty of disabled people. After all, minority ethnic groups and women have faced few if any architectural barriers, yet still remain disadvantaged and excluded due to institutional discrimination, the glass ceiling and other insidious social and economic disadvantages. Seeking to reclaim a relational interpretation, Carol Thomas highlights the ways in which the early social model literature stresses oppression as the defining feature of disability. For example, following UPIAS' definition of disability as restriction quoted earlier comes the phrase: 'disabled people are therefore an oppressed group in society'. Thomas (2004a) claims that rather than focusing on barriers, social modellists should focus on relations of oppression. Conceding that physical obstacles are only a part of the barriers and oppression which disabled people face, a focus on environmental barriers is justified for two reasons. First, creating an accessible environment would reduce social exclusion. Second, the physical obstacles approach to understanding how people are disabled has a powerful symbolic role. The conventional view of disabled people focuses on what people with impairments cannot do, physically: for example, not being able to walk or see or hear. The social model has stressed that this deficit approach is wrong, because using a wheelchair or Braille or sign language is not inferior to the majority approaches to mobility or communication, just different. Using a wheelchair only becomes a problem because the world has been badly designed or unfairly built. In other words, ideas about performance, deficit and access are key to the popular understandings of disability which the social model seeks to challenge. Problems with the notion of barrier removal therefore provide objections to the social model concept itself.

Problems with the barrier-free utopia Nature The claim that people are disabled by society, not by their bodies, has been effective in highlighting the human-created obstacles to participation in society. Yet outside the city the social model seems harder to implement. Wheelchair users are disabled by sandy beaches and rocky mountains. People with visual impairments may be unable to see a sunset, and people with hearing impairments will miss out on the sounds of birds, wind and waves. It is hard to blame the natural environment on social arrangements.

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Of course, benign social arrangements can mitigate some of these exclusions (Tregaskis, 2004b ). A paved path or wooden walkway can enable people with mobility restrictions to access nature reserves, sites of natural beauty and historic monuments. The use of video cameras and audio description will go some way to opening up inaccessible nature. Yet inevitably people with impairments will always be disadvantaged by their bodies: they will not be able to climb every mountain. Even if it were practically possible, it would defeat the very idea of wilderness to create roads and other access facilities to unspoilt and inaccessible landscapes. Within urban areas, it is possible to make both private homes and public buildings accessible. Yet if a wheelchair user lives on top of a hill, then they will face major barriers to getting around their local environment. Some cities - for example San Francisco - are innately less accessible than others - for example Cambridge. Equally, wheelchair users in the Nordic countries are regularly disabled by snowfall, whereas their counterparts in southerly latitudes can negotiate the streets throughout the winter months. Incompatibility

Implicit in the notion of a barrier-free world is the idea that Universal Design can liberate all. Yet, while in each case a solution to an access barrier can often be found, taken as a totality it may be impossible to create one environment which is accessible for all potential users. The principles of Universal Design are unarguable when taken separately, but may create conflict when aggregated. For example, wheelchair users demand level access. Yet people with mobility issues who do not use wheelchairs may find that steps are safer and easier for them than ramps. Blind people may find that kerb cuts which liberate wheelchair users make it difficult for them to differentiate pavement from road, and leave them vulnerable to walking into the path of a vehicle. Wheelchair users may have problems with tactile paving which gives locational cues to visually impaired people (Grey-Thompson, 2005). Partially sighted people may request large text on white background: people with dyslexia may prefer black print on yellow paper. Some people will prefer rooms to be dim, others will prefer them to be brightly lit. Moreover, different people with the same impairment may require different accommodation, because everyone experiences their own impairment differently, and each impairment comes in different forms, and different people have different preferences for solving impairment problems. Surveying 1,000 Americans' views on domestic adaptation, Stark (200 1) found the solution to environmental problems is highly individual for each person and will result from a plan that includes multiple strategies (including architectural modification, assistive technology, programmatic support, and personal support), and considers the perspective of the individual. (Stark, 2001: 47)

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Some people with visual impairment prefer to access information in large print, others use Braille, and others prefer to access information on audio tape or on computer disc. In other words, fully accessible information would come in a range of different formats, suitable for different users (Imrie, 2004: 282; French, 1993). Barrier removal might mean making every library book available in every format. When consideration is given to expense, person time and storage space, this solution seems inefficient and impractical. In practice, an easier solution would be to use computer technology: new books could be provided to the library as computer files, and a machine could output the information via a voice synthesiser, or a brailler, or a computer screen, depending on the individual preference of the visually impaired or indeed dyslexic user. Such an approach would make some of the information contained in the library accessible on demand, and possibly give the disabled user equal access to the non-disabled user. Disabled users would achieve the same ends as non-disabled users, but via separate and specific and possibly segregated means. This may contain the spirit of a barrier-free environment, but perhaps not the universal utopia which some rhetoric imagines. Measures of this kind begin to sound like a response to special needs, not an inclusive and non-discriminatory universal provision. Practicality

The library example begins to highlight problems of practicality which may mean that it is impossible to remove every obstacle. For example, it may be considered a poor use of resources to provide books in multiple formats, if this reduces the budget for buying new books. It may be more practical to undertake to make any book available if specifically requested within a reasonable timeframe. This again moves closer to special and separate provision than the concept of a barrierfree world, but may seem to many authorities to be a reasonable and practical compromise. Another area where principles may be less useful than pragmatism concerns buildings and facilities which were constructed in an era where the participation of disabled people was never considered. For example, the New York subway and the London underground are largely inaccessible to wheelchair users, unlike the more modem transit systems in Washington and Newcastle, each of which was built with elevators and ramps to accommodate the full range of users. Clearly, principles of Universal Design demand that new buildings are barrier-free. But debate rages as to whether authorities are obliged to make accessible existing facilities, where retro-fitting would impose huge costs and simpler measures to facilitate the independent transport of disabled people could be found. For example, Transport for London runs almost 100 per cent accessible buses. Consequently, disabled people can use public transport, but cannot make a choice between underground and bus transport. They can achieve the same ends as non-disabled people but do not have the same freedom of means. The transport system is not fully accessible, but arguably it is accessible enough to ensure dignified, non-segregated transit.

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Fully accessible and barrier-free facilities are an important goal, but there are huge difficulties to achieving them. For example, finding accessible facilities for the annual UK disability studies conferences has proved extremely difficult. Financial constraints mean that a university campus is the only realistic possibility. It is far from straightforward to find a campus which can accommodate up to 200 disabled people. In practice, access is often a compromise, and depends on goodwill and flexibility.

Barrier removal means rebuilding society The implications of creating a fully accessible society are very far reaching. For example, it might mean not just accessible transport, information and public buildings, but also accessible private homes. At the moment, it is a struggle for many disabled people to find accessible accommodation for themselves. This is a major civil rights issue, and a indictment of the failure of many societies to remove barriers or to build effective provision. Land is scarce, and hence at a premium, in the United Kingdom. Single storey dwellings are rare, and disproportionately expensive. Many bungalows are designed with older people in mind, and as a consequence do not have the number of bedrooms or size of rooms to suit either a young family, or someone manoeuvring a wheelchair. Even those with access to finance find it difficult to locate a suitable property for purchase. It is not far-fetched to think that something could be done about this. Developers could be encouraged to build a higher number of single storey or accessible homes within new build developments. It could be made a condition of receiving planning permission, or subsidies could be made available to reduce the cost of such dwellings. Housing associations are another way of making low cost accessible houses available. In this way, it could be made much easier for disabled people to find appropriate accommodation (Madigan and Milner, 1999). But in an ideal barrier-free world, a disabled person would not just be able to rely on her own home being fully accessible, but would also be able to visit her friends. The minimum requirement would be able to enter the ground floor in order to socialise, and have access to a toilet. Brief consideration of the UK shows how difficult it would be to achieve this. Most of the housing stock in the UK is not new build, and the vast majority presents barriers to people who use wheelchairs. A major transformation seems unlikely, but with political will, new build homes could be forced to conform to 'Lifetime Housing' standards. However, for the foreseeable future, a wheelchair user will find that most of her friends and relatives live in homes which she is unable to access. Thinking about other disabled people, there are similar problems. Some people experience impairments which cause pain and fatigue. Barrier-free environments and mobility aids may make it easier for them to negotiate the world. But they may still be immensely limited, and perhaps unable to participate directly in social or economic activities. Even in a barrier-free world, they may remain confined largely to their own homes, or unable to work for more than a few hours a day and hence

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excluded from the world of work, even if they have the intellectual abilities to contribute. Imagining how a barrier-free world might be achieved for people with learning difficulties. Short of a global catastrophe which returned western society to medieval levels of economic and social organisation, it would be impossible to recreate a world in which literacy and numeracy were not important attributes for economic independence and advancement. Clearly, many people with learning difficulties have basic literacy and numeracy skills, and there are good examples of people living independently and engaging in paid work. Creating better sheltered and supported employment possibilities to enable people with learning difficulties to benefit from the income, self-esteem and social integration which jobs provide should be a priority for any disability policy (Gosling and Cotterill, 2000). Yet a significant proportion of people with learning difficulties have little prospect of performing even basic work tasks (Vehmas, 2006). Thinking more specifically still, Judy Singer ( 1999) asks what barrier removal might mean for people with social impairments such as autism? If someone's impairment makes interaction with others difficult, it is difficult to see how the mainstream world could be adapted to accommodate him alongside other people. People could be educated to become more accepting and supportive of people with autism: this would remove one source of distress and cruelty. But someone with autism may find even the most well-meaning and respectful crowd of people still a disturbing and confusing invasion. With imagination, perhaps facilities could have special sessions reserved for people with social impairments, where people could shop or swim or learn without feeling crowded or disturbed by the presence of others. But again, this begins to sound less like barrier-free provision, and more like the specialised and perhaps even segregated provision of solutions for special needs. Ultimately, some people with autism may prefer selfexclusion to inclusion. Advocating enabling spatial organisation, Peter Freund (2001) asks how much difference can be accommodated. While limitations of the body will always remain restricting, he argues that there are many unexplored avenues for accomodating different 'mind-bodies'. This reconstruction of space would benefit many bodies, not just those with impairments. I find Freund's analysis helpful, and it is not my intention to oppose barrier removal in practice. But on a theoretical level, the barrier-removal solution to disability does not fully succeed, and this failure undermines the tenets of the social model. Neil Levy (2002: 139) argues that for a social causation model of disability to work, two conditions must apply: first, it must be possible to alter social arrangements so as to remove disadvantage and second, there must be no compelling reason why social arrangements could not be altered. Resource constraints are sometimes a compelling reason preventing the removal of barriers. The specifics of impairment also create disadvantage which no inclusive social arrangements can mitigate. In these situations provision of alternative ways of accessing facilities or services can often be both appropriate and acceptable.

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50 Conceptualising disability

The disability rights movement has always worked for inclusive provision and a barrier-free world. But barrier removal is not an ends in itself. It is a means to an end. The aim of barrier removal is to facilitate the participation and improve the quality of life of people with impairment. In many cases, barrier removal and inclusive provision are the most appropriate and cost-effective ways of achieving that end, with the added advantage of minimising segregation of disabled from non-disabled people. But sometimes separate or alternative provision for disabled people may be a more appropriate way of enabling them to achieve their ends and goals. For example, for people with autism that might be about providing spaces and opportunities for them to work, shop, learn or socialise where there are fewer people, fewer disturbing sounds or images, less disruption and more routine. For people with learning difficulties, that might be about supported living or working situations, or learning opportunities, or alternatives to employment which give a sense of value, purpose and fulfilment to their lives. Conclusion

The social model of disability makes a distinction between impairment and disability; claims that disability can be removed by social change; and downplays the role of impairment in the lives of disabled people. In this chapter, I have argued against each of these points. My claim is that, even in the most accessible world, there will always be residual disadvantage attached to many impairments. If people have fatigue, there is a limited amount that can be done to help: motorised scooters and other aids may help increase range and scope of activities, but ultimately the individual will be disadvantaged, when compared to others. Sally French, in her discussion of visual impairment, argues that providing adapted equipment and information to people with visual impairment does not remove disabling barriers, and may even make them worse by removing human contact (French, 1993: 19). The concepts of a barrier-free world and of Universal Design are immensely valuable in highlighting the many ways in which unnecessary barriers and thoughtless planning disadvantages many people with impairment, or who have dependents, or who are old or injured. There is undoubtedly a moral and political imperative to do much more to promote inclusion. But there are major practical and intrinsic obstacles to solving the problem of disability solely or perhaps even chiefly through barrier removal. As Michael Bury has argued, 'The reduction of barriers to participation does not amount to abolishing disability as a whole' (Bury, 1997: 137). Underlying the idea of a barrier-free world is an attempt to show that impairments can be irrelevant, and to equalise disabled and non-disabled people. Those who adopt the social model are relativist, in that they claim that having an impairment is a different but equal form of embodiment to not having an impairment. From a social model perspective, it is not the form of embodiment which is the problem, but the failure of the social world to accommodate to that form of embodiment by removing barriers. Various examples or folktales are deployed to illustrate this

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insight. For example, Michael Oliver has claimed that 'An aeroplane is a mobility aid for non-flyers in exactly the same way as a wheelchair is a mobility aid for nonwalkers' (Oliver, 1996: 108). This sort of statement is amusing, provocative, and forces people to attend to the ways in which we take certain things for granted. But it cannot be taken seriously. Not being able to fly is not the equivalent of not being able to walk. While both aeroplanes and wheelchairs enable individuals to overcome the natural restrictions of their bodies, walking is part of normal species functioning for human beings, whereas flying is not. There is no symmetry or equality between the situation of the non-flyer and the non-walker. A wheelchair is not just one travel option for a paralysed person: it is an essential facilitator. A second example is the frequent reference to Nora Groce's historical study of Martha's Vineyard. In this isolated community in America, deafness was common. It is argued that because Deaf people could communicate with all their neighbours, they did not experience disabling barriers, and hearing impairment was not a problem. Like Oliver's flyers and wheelers, this is a suggestive and valuable lesson for those who refuse to accept that disability can be normalised. But it is not evidence that a barrier-free environment eliminates disability and equalises nondisabled and disabled people. Deaf Vineyarders may have flourished in their isolated community, but unless all their hearing companions were to forgo speech, they would still miss out on some social interaction. Hearing people would have had the advantage of two forms of communication, speech and sign language, whereas Deaf people would have been limited to one form of communication, however effective. They would not have had the same choices as their hearing companions to leave the community and trade or travel off-island. They would have been disadvantaged in experiencing and negotiating the natural world because of the lack of one of their major senses. Finkelstein's utopian village provides a third example, and is similarly an illusory solution to the disability problem. Moreover, by equating able-bodied with disabled people, it glosses a real disadvantage. No village for wheelchair users would be inaccessible to non-disabled people, for the simple reason that nondisabled people always have the choice to use wheelchairs, just as hearing people have the choice to learn sign language. Again, there is no symmetry. These examples imply something important about the difference between disabled people and non-disabled people. Disabled people have less flexibility and fewer choices than non-disabled people. As Janet Radcliffe Richards has put it, an ability cannot be turned into a disability, just as no change of values turns a disability into an ability. An accessible environment minimises the inconvenience of impairment, but does not equalise disabled people with non-disabled people. Those who defend the social model, and see no reason for it to be revised or replaced, will remain unpersuaded. In particular, they will claim that my analysis creates a 'straw person'. I have misinterpreted the social model, and given an inaccurate picture of how people in the disability movement really think and operate. Nobody seeks to deny the body or impairment. Nobody is opposed to medical intervention (Oliver, 2004). There are no crude dichotomies.

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There are three responses to this defence. First, I have cited examples above and there are many more- when the public position and campaigns of the disability movement have promoted exactly the sorts of positions and distinctions which I criticise. Academic defenders of the social model are trying to have it both ways. They protest that they are not promoting crude dichotomies with one breath, whereas with the other they do exactly what they are disavowing. While some of the leading exponents of the social model now claim to operate a less rigid approach, they still simultaneously reinforce the 'strong' social model. Second, it may be true that, in private, activists don't consistently think or talk in terms of the social model. For example, many disability rights campaigners concede that behind closed doors they talk about aches and pains and urinary tract infections, even while they deny any relevance of the body while they are out campaigning. Yet this inconsistency is surely wrong: ifthe public rhetoric says one thing, while everyone behaves privately in a more complex way, then perhaps it is time to re-examine the rhetoric and speak more accurately. For example, Kirsten Stalker et al. (1999) found that many voluntary organisations which claimed to support the social model in practice used concepts which were incompatible with it. Rather than condemning their inconsistencies, I would applaud the pragmatism of people working in the field: the problem is the limitations of a model which is hard to operationalise. Alternatively, defenders of the social model orthodoxy will argue that it is unfair to criticise the inadequacies of the social model, because it is not a fully fledged social theory. For example, Vic Finkelstein has said: In my view juvenile criticisms of the social model of disability arise because it is frequently used as if it explains our situation rather than as a tool for gaining insight into the way that society disables us ... The social model does not explain what disability is. For an explanation we would need a social theory of disability. (Finkelstein, 2001: 10) Similarly, Michael Oliver has argued that 'the social model of disability is a practical tool, not a theory, an idea or a concept.' (2004: 30) and that 'models are ways of translating ideas into practice' (2004: 19). Oliver also suggests that 'it seems superfluous to criticise the social model for not being something that it has never claimed to be' (2004: 24). It is hard to know how to respond to these defences of the social model. The social model certainly provides a definition of disability. According to the Concise Oxford Dictionary, 'definition' means 'stating precise form of thing or meaning of word' whilst the most relevant definition of 'model' is as 'simplified description of system'. The distinctions between the social model as definition, as explanation, as a tool for insight, as a tool for practice, or as a social theory do not seem significant to me. Llewellyn and Hogan (2000) argue that a model is usually a smallscale theory to promote understanding and generate new research hypotheses. But the social model of disability seeks to have a larger application, and it is misleading

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to see it as a model. Instead, they suggest that it should be seen as a theoretical system: A system is a general theory in the grand sense, it seeks to describe what the subject of study is about, as well as commenting on the methods that should be employed to research into it. A system, then, needs to be inclusive in that it seeks to account for a wide range of phenomena, organises the available data and offers an account of this. (Llewellyn and Hogan, 2000: 164) Social model advocates freely criticise accounts of disability which are not based on the social model. Yet they resist criticism on the basis that the social model is not a social theory or an explanation or an idea. Again, advocates of the social model are trying to have it both ways. After thirty years of writing about the social model and applying the social model, it is hard to deny that the social model provides a theoretical system or paradigm, however much this label is abjured. Above all, it hardly matters whether the social model is a system, model, paradigm, idea, definition or even tool. What matters is that the social model is wrong.

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References Abberley, P. (1987) The concept of oppression and the development of a social theory of disability, Disability, Handicap and Society, 2, 1, 5-20. Abberley, P. (1992) Counting us out: a discussion of the OPCS disability surveys, Disability, Handicap and Society, 7, 2, 139-155. Barnes, C. (1991) Disabled People in Britain and Discrimination, London: Hurst and Co. Beresford, P. and Wallcraft, J. (1997) Psychiatric system survivors and emancipatory research: issues, overlaps and differences, in C. Barnes and G. Mercer (eds) Doing Disability Research, Leeds: The Disability Press. British Council of Disabled People (n.d.) The social model of disability and emancipatory disability research- briefing document. Online. Available HTTP: (accessed 23 March 2004). Bury, M. (1997) Health and Illness in a Changing Society, London: Routledge. Butler, J. (1990) Gender Trouble: feminism and the subversion of identity, New York: Routledge. Centre for Universal Design ( 1997) The Principles of Universal Design. Online. Available HTTP: (accessed 24 August 2004). Corker, M. and French, S. (eds) ( 1999) Disability Discourse, Buckingham: Open University Press. Crow, L. (1992) Renewing the social model of disability, Coalition, July, 5-9. Crow, L. (1996) Including all our lives, in J. Morris (ed.) Encounters with Strangers: feminism and disability, London: Women's Press. Findlay, B. (1999) Disability rights and culture under attack, Disability Arts in London, 149 (July), 6-7. Finkelstein, V. (1980) Attitudes and Disabled People, New York: World Rehabilitation Fund. Finkelstein, V. (2001) A Personal Journey into Disability Politics, Leeds: University of Leeds, Centre for Disability Studies. French, S. (1993) Disability, impairment or something in between, in J. Swain, S. French, C. Barnes and C. Thomas (eds) Disabling Barriers, Enabling Environments, London: Sage. Freund, P. (2001) Bodies, disability and spaces: the social model and disabling spatial organisations, Disability and Society, 16, 5, 689-706.

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References Goodley, D. (2001) 'Learning difficulties', the social model of disability and impairment: challenging epistemologies, Disability and Society, 16, 2, 207~231. Gordon, B.O. and Rosenblum, K.E. (2001) Bringing disability into the sociological frame: a comparison of disability with race, sex and sexual orientation statuses, Disability and Society, 16, 1, 5~19. Gosling, V. and Cotterill, L. (2000) An employment project as a route to social inclusion for people with learning difficulties? Disability and Society, 15, 7, 1001~ 1018. Grey-Thompson, T. (2005) Tactile paving and other bad inventions. Online. Available HTTP: (accessed 1 August 2005). Harris, J. and Bamford, C. (200 1) Services for Deaf and hard of hearing people, Disability and Society, 16, 7, 969~979. Hasler, F. (1993) Developments in the disabled people's movement, in J. Swain, S. French, C. Barnes and C. Thomas (eds) Disabling Barriers~ Enabling Environments, London: Sage. Hood-Williams, J. (1996). Goodbye to sex and gender, Sociological Review, 44, 1, 1~ 16. Hurst, R. ( 1995) Choice and empowerment ~ lessons from Europe, Disability and Society, 10, 4, 529~534. Hurst, R. (2000) To revise or not to revise, Disability and Society, 15, 7, 1083~1087. Imrie, R. (2004) Demystifying disability: a review of the International Classification of Functioning, Disability and Health, Sociology ofHealth and Illness, 26, 3, 287~305. Lester, H. and Tritter, J.Q. (2005) 'Listen to my madness': understanding the experiences of people with serious mental illness, Sociology ofHealth and Illness, 27, 5, 649-669. Levy, N. (2002) Reconsidering cochlear implants: the lesson of Martha's Vineyard, Bioethics, 16, 2, 134~153. Llewellyn, A. and Hogan, K. (2000) The use and abuse of models of disability, Disability and Society, 15, 1, 157~165. Lock, S., Jordan, L., Bryan, K. and Maxim, J. (2005) Work after stroke: focusing on barriers and enablers, Disability and Society, 20, I, 33-47. Madigan, R. and Milner, J. (1999) Access for all: housing design and the Disability Discrimination Act 1995, Critical Social Policy, 19, 3, 396-409. Morris, J. (1991) Pride Against Prejudice, London: Women's Press. Oakley, A. ( 1972) Sex, Gender and Society, London: Gower. Oliver, M. (1990) The Politics ofDisablement, London: Macmillan. Oliver, M. (1996) Understanding Disability: from theory to practice, Basingstoke: Macmillan. Oliver, M. (2004) The social model in action: if I had a hammer, in C. Barnes and G. Mercer (eds) Implementing the Social Model of Disability: theory and research, Leeds: The Disability Press. Rioux, M. (1994) New research directions and paradigms: disability is not measles, in M. Rioux and M. Bach (eds) Disability is not Measles: new research paradigms in disability, North York: L'lnstitut Roeher Institute. Russell, M. (2002) What disability civil rights cannot do: employment and political economy, Disability and Society, 17, 2, 117~135.

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References Sherry, M. (2002) 'Ifl only had a brain': examining the effects of brain injury in terms of disability, impairment, identity and embodiment, University of Queensland Ph.D. dissertation, unpublished. Smith, A. and Twomey, B (2002) Labour market experience of people with disabilities, Labour Market Trends, August, 415-427. Stark, S. (2001) Creating disability in the home: the role of environmental barriers in the United States, Disability and Society, 16, 1, 37-50. Thomas, C. (1999) Female forms: experiencing and understanding disability, Buckingham: Open University Press. Thomas, C. (2004a) How is disability understood? Disability and Society, 19, 6, 563-568. Thomas, C. (2004b) Rescuing a social relational understanding of disability, Scandinavian Journal of Disability Research, 6, 1, 22-36. Thomas, C. (1999) Female forms: experiencing and understanding disability, Buckingham: Open University Press. Thomas, C. (2004a) How is disability understood? Disability and Society, 19, 6, 563-568. Thomas, C. (2004b) Rescuing a social relational understanding of disability, Scandinavian Journal of Disability Research, 6, 1, 22-36. Tregaskis, C. (2004b) Applying the social model in practice: some lessons from countryside recreation, Disability and Society 19, 6, 601-612. Tremain, S. (2002) On the subject of impairment, in M. Corker and T. Shakespeare (eds) Disability/Postmodernity: embodying disability theory, London: Continuum. Vehmas, S. (2006) The who or what of Steve: severe cognitive impairment and its implications, Scandinavian Journal ofDisability Research, forthcoming. Wall, P. (1999) Pain: the science of suffering, London: Weidenfeld and Nicholson. Watson, N. (2002) Well, I know this is going to sound very strange to you, but I don't see myself as a disabled person: identity and disability, Disability and Society, 17, 5, 509-527. Williams, S.J. (1999) Is anybody there? Critical realism, chronic illness and the disability debate, Sociology ofHealth and Illness, 21, 6, 797-819.

[5]

the mountain Eli Clare

I. A METAPHOR

The mountain as metaphor looms large in the lives of marginalized people, people whose bones get crushed in the grind of capitalism, patriarchy, white supremacy. How many of us have struggled up the mountain, measured ourselves against it, failed up there, lived in its shadow? We've hit our heads on glass ceilings, tried to climb the class ladder, lost fights against assimilation, scrambled toward that phantom called normality. We hear from the summit that the world is grand from up there, that we live down here at the bottom because we are lazy, stupid, weak, and ugly. We decide to climb that mountain, or make a pact that our children will climb it. The climbing turns out to be unimaginably difficult. We are afraid; every time we look ahead we can find nothing remotely familiar or comfortable. We lose the trail. Our wheelchairs get stuck. We speak the wrong languages with the wrong accents, wear the wrong clothes, carry our bodies the wrong ways, ask the wrong questions, love the wrong people.

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And it's goddamn lonely up there on the mountain. We decide to stop climbing and build a new house right where we are. Or we decide to climb back down to the people we love, where the food, the clothes, the dirt, the sidewalk, the steaming asphalt under our feet, our crutches, all feel right. Or we find the path again, decide to continue climbing only to have the very people who told us how wonderful life is at the summit booby-trap the trail. They burn the bridge over the impassable canyon. They redraw our topo maps so that we end up walking in circles. They send their goons-those working-class and poor people they employ as their official brutesto push us over the edge. Maybe we get to the summit, but probably not. And the price we pay is huge. Up there on the mountain, we confront the external forces, the power brokers who benefit so much from the status quo and their privileged position at the very summit. But just as vividly, we come face-to-face with our own bodies, all that we cherish and despise, all that lies imbedded there. This I know because I have caught myself lurching up the mountain. II. A SUPERCRIP STORY

I am a gimp, a crip, disabled with cerebral palsy. The story of me lurching up the mountain begins not on the mountain, but with one of the dominant images of disabled people, the supercrip. A boy without hands bats .486 on his Little League team. A blind man hikes the Appalachian Trail from end to end. An adolescent girl with Down syndrome learns to drive and has a boyfriend. A guy with one leg runs across Canada. The nondisabled world is saturated with these stories: stories about gimps who engage in activities as grand as walking z,soo miles or as mundane as learning to drive. They focus on disabled people "overcoming" our disabilities. They reinforce the superiority of the nondisabled body and mind. They turn individual disabled people, who are simply leading their lives, into symbols of inspiration. Supercrip stories never focus on the conditions that make it

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so difficult for people with Down syndrome to have romantic partners, for blind people to have adventures, for disabled kids to play sports. I don't mean medical conditions. I mean material, social, legal conditions. I mean lack of access, lack of employment, lack of education, lack of personal attendant services. I mean stereotypes and attitudes. I mean oppression. The dominant story about disability should be about ableism, not the inspirational supercrip crap, the believe-it-or-not disability story. I've been a supercrip in the mind's eye of nondisabled people more than once. Running cross-country and track in high school, I came in dead last in more races than I care to count. My tense, wiry body, right foot wandering out to the side as I grew tired, pushed against the miles, the stopwatch, the final back stretch, the last muddy hill. Sometimes I was lapped by the front-runners in races as short as the mile. Sometimes I trailed everyone on a crosscountry course by two, three, four minutes. I ran because I loved to run, and yet after every race, strangers came to thank me, cry over me, tell me what an inspiration I was. To them, I was not just another hopelessly slow, tenacious high school athlete, but supercrip, tragic brave girl with CP, courageous cripple. It sucked. The slogan on one of my favorite T-shirts, black cotton inked with big fluorescent pink letters, one word per line, reads PISS ON PITY

My lurching up the mountain is another kind of supercrip story, a story about internalizing supercripdom, about becoming supercrip in my own mind's eye, a story about climbing Mount Adams last summer with my friend Adrianne. We had been planning this trip for years. Adrianne spent her childhood roaming New Hampshire's White Mountains and wanted to take me to her favorite haunts. Six times in six years, we set the trip up, and every time something fell through at the last minute. Finally, last summer everything stayed in place. I love the mountains almost as much as I love the ocean, not

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a soft, romantic kind oflove, but a deep down rumble in my bones. When Adrianne pulled out her trail guides and topo maps and asked me to choose one of the mountains we'd climb, I looked for a big mountain, for a long, hard hike, for a trail that would take us well above tree line. I picked Mount Adams. I think I asked Adrianne, "Can I handle this trail?" meaning, "Will I have to clamber across deep gulches on narrow log bridges without hand railings to get to the top of this mountain?" Without a moment's hesitation, she said, "No problem." I have walked from Los Angeles to Washington, DC, on a peace walk; backpacked solo in the southern Appalachians, along Lake Superior, on the beaches at Point Reyes; slogged my way over Cottonwood Pass and down South Manitou's dunes. Learning to walk took me longer than most kids-certainly most nondisabled kids. I was two and a half before I figured out how to stand on my own two feet, drop my heels to the ground, balance my weight on the whole long flat of each foot. I wore orthopedic shoes-clunky, unbending monsters-for several years, but never had to suffer through physical therapy or surgery. Today, I can and often do walk unending miles for the pure joy of walking. In the disability community I am called a walkie, someone who doesn't use a wheelchair, who walks rather than rolls. Adrianne and I have been hiking buddies for years. I never questioned her judgment. Of course, I could handle Mount Adams. The night before our hike, it rained. In the morning we thought we might have to postpone. The weather reports from the summit still looked uncertain, but by ro A.M. the clouds started to lift, later than we had planned to begin but still okay. The first mile of trail snaked through steep jumbles of rock, leaving me breathing hard, sweat drenching my cotton T-shirt, dripping into my eyes. I love this pull and stretch, quads and calves, lungs and heart, straining.

The trail divides and divides again, steeper and rockier now, moving not around but over piles of craggy granite, mossy and a bit

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slick from the night's rain. I start having to watch where I put my feet. Balance has always been somewhat of a problem for me, my right foot less steady than my left. On uncertain ground, each step becomes a studied move, especially when my weight is balanced on my right foot. I take the trail slowly, bringing both feet together, solid on one stone, before leaning into my next step. This assures my balance, but I lose all the momentum gained from swinging into a step, touching ground, pushing off again in the same moment. There is no rhythm to my stop-and-go clamber. I know that going down will be worse, gravity underscoring my lack of balance. I watch Adrianne ahead of me hop from one rock to the next up this tumble trail of granite. I know that she's breathing hard, that this is no easy climb, but also that each step isn't a strategic game for her. I start getting scared as the trail steepens, then steepens again, the rocks not letting up. I can't think of how I will ever come down this mountain. Fear sets up a rumble right alongside the love in my bones. I keep climbing. Adrianne starts waiting for me every 50 yards or so. I finally tell her I'm scared. She's never hiked this trail before so can't tell me if this is as steep as it gets. We study the topo map, do a time check. We have many hours of daylight ahead of us, but we're both thinking about how much time it might take me to climb down, using my hands and butt when I can't trust my feet. I want to continue up to tree line, the pines shorter and shorter, grown twisted and withered, giving way to scrub brush, then to lichen-covered granite, up to the sun-drenched cap where the mountains all tumble out toward the hazy blue horizon. I want to so badly; but fear rumbles next to love next to real lived physical limitations, and so we decide to turn around. I cry; maybe for the first time, over something I want to do, had many reasons to believe I could, but really can't. I cry hard, then get up and follow Adrianne back down the mountain. It's hard and slow, and I use my hands and butt often and wish I could use gravity as Adrianne does to bounce from one flat spot to another, down this jumbled pile of rocks.

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I thought a lot coming down Mount Adams. Thought about }Jitterness. For as long as I can remember, I have avoided certain questions. Would I have been a good runner if I didn't have CP? Could I have been a surgeon or pianist, a dancer or gymnast? Tempting questions that have no answers. I refuse to enter the territory marked bitterness. I wondered about a friend who calls herself one of the last of the polio tribe, born just before the polio vaccine's discovery. Does she ever ask what her life might look like had she been born five years later? On a topo map, bitterness would be outlined in red. I thought about the model of disability that separates impairment from disability. Disability theorist Michael Oliver defines impairment as "lacking part of or all of a limb, or having a defective limb, organism or mechanism of the body."r I lack a fair amount of fine motor control. My hands shake. I can't play a piano, place my hands gently on a keyboard, or type even fifteen words a minute. Whole paragraphs never cascade from my fingertips. My longhand is a slow scrawl. I have trouble picking up small objects, putting them down. Dicing onions with a sharp knife puts my hands at risk. A food processor is not a yuppie kitchen luxury in my house, but an adaptive device. My gross motor skills are better but not great. I can walk mile after mile, run and jump and skip and hop, but don't expect me to walk a balance beam. A tightrope would be murder; boulder hopping and rock climbing, not much better. I am not asking for pity. I am telling you about impairment. Oliver defines disability as "the disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical (and/or cognitive/ intellectual] impairments and thus excludes them from the mainstream of society."' I write slowly enough that cashiers get impatient as I sign my name to checks, stop talking to me, turn to my companions, hand them my receipts. I have failed timed tests, important tests, because teachers wouldn't allow me extra time to finish the sheer physical act of writing, wouldn't allow me to use a

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typewriter. I have been turned away from jobs because my potential employer believed my slow, slurred speech meant I was stupid. Everywhere I go people stare at me, in restaurants as I eat, in grocery stores as I fish coins out of my pocket to pay the cashier, in parks as I play with my dog. I am not asking for pity. I am telling you about disability. In large part, disability oppression is about access. Simply being on Mount Adams, halfway up Air Line Trail, represents a whole lot of access. When access is measured by curb cuts, ramps, and whether they are kept clear of snow and ice in the winter; by the width of doors and height of counters; by the presence or absence of Braille, closed captions, ASL, and TDDs; my not being able to climb all the way to the very top of Mount Adams stops being about disability. I decided that turning around before reaching the summit was more about impairment than disability. But even as I formed the thought, I could feel my resistance to it. To neatly divide disability from impairment doesn't feel right. My experience of living with CP has been so shaped by ableismor to use Oliver's language, my experience of impairment has been so shaped by disability-that I have trouble separating the two. I understand the difference between failing a test because some stupid school rule won't give me more time and failing to summit Mount Adams because it's too steep and slippery for my feet. The first failure centers on a socially constructed limitation, the second on a physical one. At the same time, both center on my body. The faster I try to write, the more my pen slides out of control, muscles spasm, then contract trying to stop the tremors, my shoulder and upper arm growing painfully tight. Even though this socially constructed limitation has a simple solution-access to a typewriter, computer, tape recorder, or person to take dictation-I experience the problem on a very physical level. In the case of the bodily limitation, my experience is similarly physical. My feet simply don't know the necessary balance. I lurch along from one rock to the next, catching myself repeatedly as I start to fall, quads quickly sore from exer-

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tion, tension, lack of momentum. These physical experiences, one caused by a social construction, the other by a bodily limitation, translate directly into frustration, making me want to crumple the test I can't finish, hurl the rocks I can't climb. This frustration knows no neat theoretical divide between disability and impairment. Neither does disappointment nor embarrassment. On good days, I can separate the anger I turn inward at my body from the anger that needs to be turned outward, directed at the daily ableist shit, but there is nothing simple or neat about kindling the latter while transforming the former. I decided that Oliver's model of disability makes theoretical and political sense but misses important emotional realities. I thought of my nondisabled friends who don't care for camping, hiking, or backpacking. They would never spend a vacation sweat-drenched and breathing hard halfway up a mountain. I started to list their names, told Adrianne what I was doing. She reminded me of other friends who enjoy easy day hikes on smooth, well-maintained trails. Many of them would never even attempt the tumbled trail of rock I climbed for an hour and a half before turning around. We added their names to my list. It turned into a long roster. I decided that if part of what happened to me up there was about impairment, another part was about desire, my desire to climb mountains. I thought about supercrips. Some of us-the boy who bats .486, the man who through-hikes the A.T.-accomplish something truly extraordinary and become supercrips. Others of us-the teenager with Down syndrome who has a boyfriend, the kid with CP who runs track and cross-country-lead entirely ordinary lives and still become supercrips. Nothing about having a boyfriend or running cross-country is particularly noteworthy. Bat .486 or have a boyfriend, it doesn't matter; either way we are astonishing. In the creation of supercrip stories, nondisabled people don't celebrate any particular achievement, however extraordinary or mundane. Rather, these stories rely upon the perception that disability and achievement contradict each other and that any disabled person

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who overcomes this contradiction is heroic. To believe that achievement contradicts disability is to pair helplessness with disability, a pairing for which crips pay an awful price. The nondisabled world locks us away in nursing homes. It deprives us the resources to live independently.> It physically and sexually abuses us in astoundingly high numbers. 4 It refuses to give us jobs because even when a workplace is accessible, the speech impediment, the limp, the ventilator, the seeing-eye dog are read as signs of inability.5 The price is incredibly high.

And here, supercrip turns complicated. On the other side of supercripdom lie pity, tragedy, and the nursing home. Disabled people know this, and in our process of knowing, some of us internalize the crap. We make supercrip our own, particularly the type that pushes into the extraordinary, cracks into our physical limitations. We use supercripdom as a shield, a protection, as if this individual internalization could defend us against disability oppression. I climbed Mount Adams for an hour and a half scared, not sure I'd ever be able to climb down, knowing that on the next rock my balance could give out, and yet I climbed. Climbed surely because I wanted the summit, because of the love rumbling in my bones. But climbed also because I wanted to say, "Yes, I have CP, but see. See, watch me. I can climb mountains too." I wanted to prove myself once again. I wanted to overcome my CP. Overcoming has a powerful grip. Back home, my friends told me, "But you can walk any of us under the table." My sister, a serious mountain climber who spends many a weekend high up in the North Cascades, told me, "I bet with the right gear and enough practice you could climb Mount Adams." A woman who doesn't know me told Adrianne, "Tell your friend not to give up. She can do anything she wants. She just has to want it hard enough." I told myself as Adrianne and I started talking about another trip to the Whites, "If I used a walking stick, and we picked a dry day and a

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different trail, maybe I could make it up to the top of Adams." I never once heard, "You made the right choice when you turned around." The mountain just won't let go. III. HOME

I will never find home on the mountain. This I know. Rather home starts here in my body, in all that lies imbedded beneath my skin. My disabled body: born prematurely in the backwoods of Oregon, I was first diagnosed as "mentally retarded," and then later as having CP. I grew up to the words cripple, retard, monkey, defect, took all the staring into me and learned to shut it out. My body violated: early on my father started raping me, physically abusing me in ways that can only be described as torture, and sharing my body with other people, mostly men, who did the same. I abandoned that body, decided to be a hermit, to be done with humans, to live among the trees, with the salmon, to ride the south wind bareback. My white body: the only person of color in my hometown was an African American boy, adopted by a white family. I grew up to persistent rumors of a lynching tree way back in the hills, of the sheriff running people out of the county. For a long time after moving to the city, college scholarship in hand, all I could do was gawk at the multitude of humans: homeless people, their shopping carts and bedrolls, Black people, Chinese people, Chicanos, drag queens and punks, vets down on Portland's Burnside Avenue, white men in their wool suits, limos shined to sparkle. I watched them all, sucking in the thick weave of Spanish, Cantonese, street talk, formal English. This is how I became aware of my whiteness. My queer body: I spent my childhood, a tomboy not sure of my girlness, queer without a name for my queerness. I cut firewood on clearcuts, swam in the river, ran the beaches at Battle Rock and Cape Blanco. When I found dykes, fell in love for the first time, came into a political queer community, I felt as if I had found home again.

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the mountain

II-•

The body as home, but only if it is understood that bodies are never singular, but rather haunted, strengthened, underscored by countless other bodies. My alcoholic, Libertarian father and his father, the gravedigger, from whom my father learned his violence. I still dream about them sometimes, ugly dreams that leave me panting with fear in the middle of the night. One day I will be done with them. The white, working-class loggers, fishermen, and ranchers I grew up among: Les Smith, John Black, Walt Maya. Their ways of dressing, moving, talking helped shape my sense of sel£ Today when I hear queer activists say the word redneck like a cuss word, I think of those men, backs of their necks turning red in the summertime from long days of work outside, felling trees, pulling fishnets, baling hay. I think of my butchness, grounded there, overlaid by a queer, urban sensibility. A body of white, rural, working-class values. I still feel an allegiance to this body; even as I reject the virulent racism, the unexamined destruction of forest and river. How could I possibly call my body home without the bodies of trees that repeatedly provided me refuge? Without queer bodies? Without crip bodies? Without transgender and transsexual bodies? Without the history of disabled people who worked as freaks in the freak show; displaying their bodies: Charles Stratton posed as General Tom Thumb, Hiram and Barney Davis billed as the "Wud Men from Borneo"? The answer is simple. I couldn't. The body as home, but only if it is understood that place and community and culture burrow deep into our bones. My earliest and most enduring sense of place is in the backwoods of Oregon, where I grew up but no longer live, in a logging and fishing town of a thousand that hangs on to the most western edge of the continental United States. To the west stretches the Pacific Ocean; to the east the Siskiyou Mountains rise, not tall enough to be mountains but too steep to be hills. Portland is a seven-hour drive north; San Francisco, a twelve-hour drive south. Douglas fir and chinook salmon, south wind whipping the ocean into a fury of waves and surf, mark home for me. Marked by the aching knowledge of environmental destruction, the sad truth of that town founded on

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the genocide of Native peoples, the Kwatami and Coquelle, Talkema and Latgawa. In writing about the backwoods and the rural, white, working-class culture found there, I am not being nostalgic, reaching backward toward a re-creation of the past. Rather I am reaching toward my bones. When I write about losing that place, about living in exile, I am putting words to a loss which also grasps atmybones. The body as home, but only if it is understood that language too lives under the skin. I think of the words crip, queer, freak, redneck. None of these are easy words. They mark the jagged edge between self-hatred and pride, the chasm between how the dominant culture views marginalized peoples and how we view ourselves, the razor between finding home, finding our bodies, and living in exile, living on the metaphoric mountain. Whatever our relationships with these words-whether we embrace them or hate them, feel them draw blood as they hit our skin or find them entirely fitting, refuse to say them or simply feel uncomfortable in their presencewe deal with their power every day. I hear these words all the time. They are whispered in the mirror as I dress to go out, as I straighten my tie and shrug into my suit jacket; on the streets as folks gawk at my trembling hands, stare trying to figure out whether I'm a woman or man; in half the rhetoric I hear from environmentalists and queer activists, rhetoric where rural working-class people get cast as clods and bigots. At the same time, I use some, but not all, of these words to call out my pride, to strengthen my resistance, to place myself within community. Crip, queer,freak, redneck burrowed into my body. The body as home, but only if it is understood that bodies can be stolen, fed lies and poison, torn away from us. They rise up around me-bodies stolen by hunger, war, breast cancer, AIDS, rape; the daily grind of factory, sweatshop, cannery, sawmill; the lynching rope; the freezing streets; the nursing home and prison. African American drag performer Leonard/Lynn Vines, walking through his Baltimore neighborhood, called a "drag queen faggot bitch'' and shot six times. Matt Shepard-gay, white, young-

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tied to a fence post in Wyoming and beaten to death. Some bodies are taken for good; other bodies live on, numb, abandoned, full of self-hate. Both have been stolen. Disabled people cast as supercrips and tragedies; lesbian, gay; bi, and trans peoples told over and over again that we are twisted and unnatural; poor people made responsible for their own poverty. Stereotypes and lies lodge in our bodies as surely as bullets. They live and fester there, stealing the body. The body as home, but only if it is understood that the stolen body can be reclaimed. The bodies irrevocably taken from us: we can memorialize them in quilts, granite walls, candlelight vigils; remember and mourn them; use their deaths to strengthen our will. And as for the lies and false images, we need to name them, transform them, create something entirely new in their place, something that comes close and finally true to the bone, entering our bodies as liberation, joy; fury; hope, a will to refigure the world. The body as home.

The mountain will never be home, and still I have to remember it grips me. Supercrip lives inside my body; ready and willing to push the physical limitations, to try the "extraordinary;" because down at the base of the mountain waits a nursing home. I hang on to a vision. Someday after the revolution, disabled people will live ordinary lives, neither heroic nor tragic. Crip, queer, freak, redneck will be mere words describing human difference. Supercrip will be dead; the nursing home, burnt down; the metaphoric mountain, collapsed in volcanic splendor. Post-revolution I expect there will still be literal mountains I want to climb and can't, but I'll be able to say without doubt, without hesitation, "Let's turn around here. This one is too steep, too slippery for my feet."

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notes THE MOUNTAIN

Quoted in David Hevey, The Creatures Time Forgot: Photography and Dis-

ability Imagery (London: Routledge, 1992), 9· 2 3

Ibid., 9· Marta Russell, Beyond Ramps (Monroe, ME: Common Courage Press, 1998), 96-ro8.

4

Dick Sobsey, Violence andAbuse in the Lives ofPeople with Disabilities (Bal-

5

Joseph Shapiro, No Pity: People with Disabilities Forging a New Civil Rights

timore: Paul H. Brookes Publishing, 1994), 68.

Movement (New York: Times Books, 1994), 27-28.

171

[6]

Does Disability Status Matter? MARK KELMAN INTRODUCTION In Bragdon v. Abbott1 the defendant, a dentist, refused to fill the cavity of the plaintiff, who was HIV-positive, outside a hospital setting. The defendant argued not only that he was justified in demanding that the patient be treated in a hospital because he would otherwise be at undue risk of contracting a life-threatening disease, but that he was entitled to refuse to treat her whether he was justified in his (highly atypical) medical judgments or not, because she was not a member of the class protected by the ADA. His argument, in essence, was that because she could be described as asymptomatic (in the sense that unlike a full-blown AIDS patient, she was not, by her own description, especially sick on a day-today basis) she could not conceivably be considered disabled; asymptomatic and "disabled" are, the defendant argued, virtually antonyms. The arguments made by both the majority and the dissenters on this issue have a decidedly otherworldly quality to them. On the one hand, it is clear that the dentist, Dr. Bragdon, would have refused to treat a full-blown AIDS patient for precisely the same reason that he refused to treat Ms. Abbott. It is difficult to imagine why he should be entitled to refuse treatment to Ms. Abbott because he erroneously fears that treating her risks infection if he would not be permitted to refuse treatment to someone whose disease had progressed further based on the same irrational fear. On the other hand, the patient's argument-that she is entitled to the protection of the ADA because even asymptomatic HIV infection interferes with reproduction, a major life activity-seems grossly beside the point as well. Just as it appears peculiar to argue that the dentist could be compelled to fill the cavity of someone with symptomatic AIDS but not someone whose symptoms were less visible or manifest, it appears equally troubling to believe that a hypothetical postmenopausal Ms. Abbott, whose HIV infection unquestionably has no bearing on reproduction, would be any less entitled to protection against discrimination than the actual plaintiff is afforded. Perhaps the Court's problem is not really one of conceptual confusion. Instead, the case is arguably driven by some combination of legal formalism and institutional competence concerns. The argument from formalism is straightforward. There are a host of reasons for courts to be bound by dear language directives (whether legislative language or the language of judicial precedents). Legal regulatory regimes often state substantive policies in terms of rules (or proxies)-readily discovered, verbally unambiguous features of factual situations-rather than standards-restatements of the purposes that we hope to achieve by regulating an area of social life. (Thus we tell the voting registrar to allow those who are 18 or older to vote, not to try to ascertain which voting applicants are "politically mature," in order to, for instance, reduce official discretion or administrative and litigation costs. Chronological age is merely an easily identified, linguistically unambiguous proxy for political maturity, but one can readily defend the use of such an easily administered proxy.) The argument for institutional competence is equally familiar: legislatures are the (sole)

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92 MARK KELMAN democratically legitimated source of policy judgments, and courts should simply do their best to implement the legislative scheme. The ADA formally protects those with (actual or perceived) disabilities and defines a disability as a "physical or mental impairment that substantially limits one or more of the major life activities of [such] individual [who complains that she is the victim of discrimination]." Given what the Court (mysteriously) saw as this plain, transparent statutory language, it might appear that the Court has no choice but to ascertain, first whether the plaintiff has a physical impairment2 and, second, that the impairment substantially interferes with a major life activity. 3 A number of the amici chose to emphasize the degree to which asymptomatic HIV infection interfered with innumerable daily activities. (Of course, this argument is politically ambiguous for disability rights advocates and AIDS activists who may well want to emphasize the degree to which people who are HIVpositive have no real problems working.) But the patient's lawyers chose instead to rely on the fact that the infection interfered with an "activity" (reproduction) that is "major" in the sense that it is frequently of great emotional and social significance in an individual's life plan. They did so despite the fact that reproduction can readily be differentiated from the specifically statutorily enumerated activities. It is neither a single, discrete "activity" (like walking or hearing), an activity that is repeated on a daily basis such that the inability to perform it would be manifest pretty much continuously, nor an activity thought to have largely instrumental value in meeting a range of economic production or consumption goals. It is certainly possible, though-and analytically helpful-to imagine what it would be like to clear away all the formal and institutional underbrush here and ask whether Ms. Abbott's claim should turn, in any way, on ascertaining whether those with asymptomatic HIV infections are disabled. Do those with disabilities have some trait as individuals that differentiates them from those who are not disabled, that makes them candidates for legal protection not afforded those lacking the trait? Alternatively, or additionally, are they are members of some social group that is rightly afforded protection that others lack? To put the point more broadly: What would it be like to have "disability law" that made no reference at all to whether the plaintiff is disabled? Why do, or should, we care about whether a plaintiff possesses some preliminary status trait before we decide that she is afforded protections parallel to those offered by the ADA? To answer that question, of course, it seems we must first do what legal realists conventionally taught us to do in thinking about legal "rights": view "rights" as simple instantiations of the remedies a "rightsbearer" is entitled to. 4

REMEDIES AND DISABILITY STATUS There are essentially two remedies the ADA contemplates granting those whose "rights" under the statute are violated: first, protection against "simple discrimination" (differential treatment despite equality along "relevant" dimensions), and second, "reasonable accommodation'' (of relevant difference). Obviously, it is possible to imagine that people are unequal in ways some would deem relevant and others would not; thus the right to be free from simple discrimination requires some consensus on what traits potential defendants can deem relevant. The right to demand reasonable accommodation likewise is undefined till we've decided which distinctions should be accommodated. These remedies have relatively precise conventional meanings, though-defined in relationship to conventional understandings of the workings of a market economy. A per-

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Does Disability Status Matter? 93 son suffers from simple discrimination insofar as an employer (in the employment discrimination context traditionally regulated by Title VII of the 1964 Civil Rights Act) or a public accommodation owner (in the public accommodation context traditionally regulated by Title II of the same act) fails to treat him "impersonally." Insofar as the employer or owner cares about the person's status or traits that are irrelevant to such person's economic function, he or she is breaching the duty to avoid simple discrimination. A public accommodation owner discriminates in this way if he or she does not treat a potential customer as a source of net proceeds (money he or she will receive to provide a service net of the costs of service provision); an employer discriminates insofar as he or she treats the employee or job applicant as anything but embodied net marginal product (the value of the increase in goods or services the firm will produce if the employee is added to the firm, net of the added costs that the firm will incur if she or he is employed by the firm.) A customer or employee is entitled by the ADA to reasonable accommodation in the sense that the public accommodation owner or employer must treat the customer or worker in terms of his or her gross, not net, value added to the firm. This obligation to ignore the input costs associated with serving the customer or employing the worker or applicant holds only so long as the cost of these atypical inputs is not unduly high (reasonable in that sense) and the added inputs would not benefit other customers or potential employees nearly as much as they would benefit the plaintiff. Thus, in the public accommodations context, the simple antidiscrimination principle would preclude the dentist from refusing to treat a hearing-impaired patient, even though his inability to communicate with the patient affected neither the price the patient would pay nor the cost of serving him. The accommodation principle would require that the dentist take steps to be able to communicate with the hearing-impaired patient if necessary to provide her with the same quality care he gives other patients, without charging the patient the incremental costs of treating her. 5 This is true even though a simple, nondiscriminating, impersonal, capitalist calculator would refuse to treat a patient who is atypically costly to serve unless permitted to charge more for the services. 6 In the employment context, the conventional antidiscrimination norm forbids an employer from refusing to hire a blind lawyer who can do the same legal work as a sighted one. The accommodation principle demands that the employer not reduce the blind lawyer's pay if he requires a "reasonably'' costly reader to generate the same work that sighted lawyers do without an aide/ What is critical to note is that these two distinct antidiscrimination principles need not, at first blush, make any reference to group membership status. An individual could be deemed the victim of simple discrimination if he were not treated exclusively as the source of net receipts (in the public accommodation context) or net marginal product (in the labor market context). Any individual could be said to be entitled to accommodations (costly inputs) that permit him or her to generate as much output as similarly rewarded workers (in the labor market context) or to receive the same quality services for the same price as others (in the public accommodation context), so long as these inputs are not unduly expensive and would not be valued by other workers and customers as much as she valued them. This is especially obvious in relationship to simple discrimination. Individuals qua individuals might be entitled to "market-rational" treatment. In this sense, the antidiscrimination norm is simply coextensive with a norm requiring such treatment. We know that an African-American has been the victim of discrimination before we need consider his or her race; we know it because he or she, as an individual, did not get something he or she deserved.

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94 MARK KElMAN In this view, social groups are relevant for only limited purposes, each of which could best be described as administrative. First, because we know that outcomes for individuals have a good deal of randomness to them, we believe we are able to discern irrational treatment by those accused of treating individuals irrationally only if we look at groups for proof purposes. We care about the treatment of black job applicants or workers as a group in this view largely because we will not be able to ascertain in most cases whether an individual black applicant was treated unfairly. This observation was most dramatically apparent in looking at earnings equations and trying to ascertain whether we are observing trait-based discrimination. We know that no individual's pay can be predicted very exactly on the basis of standard productivity traits (schooling, experience etc.). But we expect "randomness" to average out when there are large numbers of observations. If it does not, it is a result of unwarranted discrimination, not error or luck. Groups are created in this view as statistician's artifacts to measure the existence of discrimination against individuals with a commonality that makes us believe they will be victims of discrimination atypically often. We may suspect that those with decision-making power might exhibit animus or aversion towards those possessing the trait, or suspect that they are likely to misconceive the true virtues of those possessing the trait, as a result of false stereotyping. But the group need not have any self-conscious identity-whether as a social group into which one feels "thrown" or as a voluntarily created political association. 8 There are clearly such aggregates where we do not surmise it is even worth investigating the possibility that the group is subjected to simple discrimination: the group of those born on Wednesday constitute such an aggregation. 9 Second, if we decide that individuals have affirmative entitlements to impersonal rational treatment, we may still believe that we will use state power to protect only members of historically subordinated social groups. We may believe that not because the entitlement is breached any less when someone who lacks that status suffers irrational treatment but because we believe that members of socially advantaged groups are unlikely to face such treatment persistently across a variety of settings. A straight, white, able-bodied male may, in this view, be the victim of irrational treatment by a particular employer or public accommodations owner (whom he reminds of a loathed stepfather, for instance). We expect, though, that such idiosyncratic irrationality will have few consequences, given the presence of other employers and sellers. We may reasonably believe that prejudice against MricanAmericans (or those with disabilities, or gays and lesbians) is widespread among those with social power. Stereotypes are both socially created and social-norm-enforced. On the other hand, the hypothetical white male applicant or customer is unlikely to run into many people whom he reminds of a hated stepfather. Both the Mrican-American and the white are victims of discrimination, so defined, but only the one is likely to be corrected by market competition rather than state action. 10 The idea that we focus on group membership for wholly administrative reasons appears to me incomplete even when we are talking only about simple discrimination. Part of what is wrongful about this sort of conventional discrimination is plainly that it precludes an individual from receiving some good or service she both desires and deserves; in that sense, the antidiscrimination norm vindicates legitimate material expectations that have been frustrated. And part of what the norm vindicates is a desire to be treated fairly. In this sense, what we seek to protect is not so much the interest in getting the thing one wants but the interest in being treated appropriately. It seems, though, that the norm is significantly designed to protect as well against the stigma imposed on subordinated group members, and is therefore not purely individualis-

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Does Disability Status Matter? 95 tic as a matter of theory as well as administrative practice. In this regard, we care less that a person is denied a job he's entitled to because he reminds the employer of a hated stepfather, not only because the applicant is likely to find a job elsewhere. The decision not to hire in such a case does not confirm traditional status-based hierarchies, express the social power of one group over another, or demean the victim. It is far more plainly the case from the "victim's" vantage point that he or she is dealing with a stupid jerk with some social power. It is far less plausible that he or she would believe he or she is dealing with someone whose judgment has the weight of tradition, someone who makes the sort of covert social claims for the validity of negative views that keep groups "in their place." It is similarly possible, though considerably less conventional, to state demands for accommodation without regard to group membership. Any employee might be entitled to be treated precisely as well as those with the same gross output potential are treated, without regard to the fact that the input costs needed to generate that output differ. This formulation of the "right to accommodation" is most straightforward when the worker demands that the employer expend funds out of pocket to support his work (supplying him with more expensive capital equipment or costly aids) .11 The gross output/net output distinction is more awkwardly applied to situations in which the accommodation the employee requests is one which allows him or her to generate less output over the course of her employment, though he or she still generates as much output per unit of time. (If, for instance, an employee suffering from depression or chronic fatigue syndrome requires time off, so that his or her gross output is lower over the course of a year than his or her coworkers' but is the same per hour, this is a demand for an accommodation in this sense.) 12 In either case, though, it is not obvious why it matters whether the employee is a member of a social group, or more particularly whether we think of her as disabled. So long as employees sought only costly physical help (aides and equipment), it was seemingly inevitably the case that only those who could be described as disabled would seek accommodation. Neither an expensive Braille printer nor a reader is of any use to the sighted; special keyboards are of no use to those without repetitive stress disorders (or at least the risk of developing them). But the question of whether or not one is disabled need not be answered prior to the question of whether one would in fact be helped by the desired accommodation. The inability to produce as much without the atypical inputs, despite the ability to do so with the aid, defined the person as disabled. We needed no separate inquiry into group status. 13 If, though, those seeking accommodations ask not just for simple physical aids but, for instance, for less demanding schedules, there are many individuals who might claim that they (a) are as productive (per hour) as fellow employees, and (b) "need" time away from work more than their fellow workers. Those with atypical caretaking responsibilities (e.g., parents with small kids, adults with sick relatives) do not really purport to be members of a social group (and are certainly not "disabled"). Nonetheless, they might also claim that they should be treated in terms of their gross productivity, without penalizing them for generating higher input costs by demanding flextime or time off. Naturally, it is not easy to distinguish "needs" from "wants." The claim that a worker needs accommodation is thus not readily adjudicated. For a purely hedonic utilitarian, a need appears to be nothing more than an especially intense want. For such utilitarians, a plaintiff seeking time off to play golf has a weaker claim than one who seeks time off to care for a sick child only insofar as they believe he values golf less than the competing claimant values caring for his child. Antidiscrimination law is clearly animated in part, though, by the idea that claims for social inclusion have priority over mere hedonic desires: what

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96 MARK KELMAN historically subordinated people justly seek redress for is their exclusion from participation in valued social spheres. Thus we should not evaluate the demand for a less onerous schedule as a simple claim to a state-mandated in-kind subsidy, to be allocated to whatever party values it most. Instead, the party must claim that he or she "needs" the accommodation, in the sense that but for the accommodation, he or she simply will not (and should not be expected to) participate in ordinary social life. At this point, though, the question of group membership again becomes salient. Does antidiscrimination law simply remind us how significant social inclusion is for all individuals, or does it tell us that social inclusion is especially significant only to those who are members of groups that have been relegated to outsider status? Do we have a universalized principle that we give high priority to each individual's capacity to enter the range of social spheres-in which case it does not matter whether we think of those with caretaking duties as a social group or not? Or do we have a special interest in integrating members of groupslike those with disabilities-who share a history of having been excluded from relevant spheres? We might differentiate the claims made by those with disabilities from the claims made by others seeking less rigid schedules. Those with disabilities alone might claim that they would simply not produce as much per hour if forced to work the more typical schedule, while those with caretaking responsibilities must claim, instead, that their losses outside the workplace are atypically high if they work a typical schedule. It is not lucid to me, though, that those without disabilities could not also claim that their productivity at work would be compromised if forced to work full-time. 14 More important, it is not clear that their moral claim is especially compromised if they seek accommodation to avoid especially large losses outside the workplace rather than productivity losses at work. Moreover, the accommodation one would expect most asymptomatic HIV-positive plaintiffs to seek in the employment setting if they required accommodation at all-time off to follow medication regimens and to monitor health status-is designed essentially to preclude atypical out-of-work losses. It is also possible to see the demand for accommodation as the demand for resource redistribution. In essence, an entity subject to a demand for accommodation is asked to pay an implicit "regulatory tax'' which is then "implicitly spent" on a program that provides certain benefits, in-kind rather than in-cash, to those benefitted by the accommodation.15 Redistributive programs may legitimately be focused on needy individuals, without regard to group identity, for a host of familiar reasons (e.g., conventional utilitarians believe that the marginal utility of income declines so that such redistribution increases aggregate utility). They may also be directed at improving the status of certain groups. (Even methodological individualists, who believe that only the welfare and rights of individuals count, may be group-sensitive in formulating a distribution policy.) If a particular redistributive program is justified by virtue of its favorable impact on a group, then parties obviously ought not to benefit from the program unless their participation will in fact aid the group. In this regard, if the ADA is intended to redistribute income in-kind to those with disabilities in some substantial part to aid the group of those with disabilities, then group identity and membership clearly count.

HOW AND WHY DOES DISABILITY STATUS COUNT? Assume first that the ADA is designed only to eliminate what I have labeled simple discrimination. Group status matters in such a case, I argued, largely for administrative

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Does Disability Status Matter? 91 reasons if we ignore, for the moment, the possibility that we use state power to counter such discrimination only when it imposes stigmatic injury on its victims. If the disputed practice is one whose legitimacy cannot be ascertained in individual cases, but only by examining a pattern of cases, we need to investigate those statistical aggregates where we suspect either animus or stereotyping are widespread. In Bragdon v. Abbott itself, though, the dentist's conduct either is or is not "market-rational" in relationship to the particular plaintiff. The refusal to treat any party because of false beliefs about the risks of treating her could readily be interrogated (and banned) without any regard to the group status of the plaintiff. There will be innumerable cases, though, in which the practices of an employer or public accommodation owner cannot be evaluated unless we see how he has treated a group of similarly situated plaintiffs. Most notably, refusals to hire individuals or pay and promotion decisions are often hard to evaluate looked at one at a time. We would certainly be right to suspect that the core groups Congress has protected through civil rights legislation (women, members of ethnic minorities, those with conventionally defined disabilities) as well as some it clearly has not (gays and lesbians) and others whose legal status is uncertain (people conventionally judged unattractive or overweight) are subject to aversive prejudice and stereotyping. It would thus surely be worth investigating whether members of such groups are treated irrationally. But we need no strong independent theory of groups to do the work here. If a plaintiff's lawyer can convince a fact finder that his clients are treated irrationally by demonstrating that there is a statistical aggregate of people receiving poor treatment that is more plausibly explained by their identity than by random chance, his clients should prevail. "Groups" are relevant in the very thin sense that membership in a socially cognizable "victim group" connotes that atypically bad outcomes are more plausibly attributed to social process than lottery luck. If instead we look to the state to correct simple discrimination only when we believe the market fails to do so spontaneously, group membership may be more important. Markets presumably fail to eliminate irrational treatment where irrationalities are widespread rather than idiosyncratic. Irrationalities are widespread in relationship to traits possessed by groups, not isolated individuals. Even in the Bragdon context, one might believe that the market protects victims of idiosyncratic beliefs that particular patients are dangerous to treat, but does not protect those with socially stigmatized diseases. Thus, given this view, what the Court should ask is whether those who are HIV-positive, like others who are unambiguously deemed disabled, are likely to confront repeatedly the same sort of ignorant stereotypes or aversive prejudice from market actors other than the particular defendant. They are disabled, in the relevant sense, iflikely to suffer such repeated prejudice. 16 We are arguably especially prone to protect people from market-irrational treatment when and only when their failure to receive it does more than defeat legitimate expectations to receive particular economic benefits or legitimate expectations to receive fair treatment. Arguably, we invoke antidiscrimination law only for those who legitimately experience such treatment as stigmatizing. In this regard, group membership is vital. Stigmatic injuries are almost invariably injuries imposed on individuals by virtue of their group-based identity, insults to collectives with which the plaintiff associates him- or herself. There is fairly sharp political disagreement over whether parties experience significant stigmatic injury unless their group status is subordinate, but there is considerably less controversy over the significance of group identity. 17 Again, if this account is correct, a court assessing whether HIV-positive persons are "disabled" should ask itself whether they share with others conventionally dubbed disabled a vulnerability to stigmatic injury when

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98 MARK KELMAN excluded or mistreated. In this view we protect only those with a justified sense that they have sustained a wound to the identity they derive through mutual recognition of significant social commonalities. (I should note that I am quite wary of limiting antidiscrimination protection to those who can claim stigmatic injury, believing that such a restriction unduly encourages people to identifY themselves in increasingly rigid group categories.) If we protect persons who make legitimate claims to accommodation, we should decide whether claims made by members of acknowledged groups to atypical inputs are more compelling than other similar claims. "Disability law" could readily dispense with the disability category and focus explicitly on the reasonableness of the accommodation demand. To do so, we would need to address genuinely difficult questions that have been thus far evaded. Should a worker be penalized (at all) for requiring more expensive capital inputs to produce a certain amount just as she would be penalized for producing less? Should the reasonableness of an accommodation turn on the resources available to the entity that deals with the party seeking an accommodation, or should we judge more directly whether the cost of the accommodation is justified by the benefits? Does a worker "need" an accommodation solely because such an accommodation permits her to increase her output at work, or should she be granted one only if the failure to do so would (realistically) preclude her from working? If, though, we need to decide, as in Bragdon, whether HIV-positive status "is" a disability, given that only those with disabilities are entitled to accommodation, we must simply decide whether the accommodations HIV-positive persons will seek closely resemble those demanded by those more unambiguously disabled. It seems to me difficult to imagine why any legislator would find demands for work-schedule reductions (or breaks to take medication) any less compelling for an HIV-positive plaintiff than one with diabetes or a cancer patient who needs to leave work to get chemotherapy. If we have decided that the demands to care for one's own body must be accommodated, even if we are less certain that demands to care for others (or to pursue other extra-work goals) need be, then HIV-positive plaintiffs are making the sorts of demands we have decided should be accommodated. Finally, to the degree that we see accommodation orders as implicit taxes redistributed in kind to those benefited by the orders, we need to decide how compelling claims of groups to redistributive largesse really are, compared to more individualistic claims of need. An analogy might well help. We might choose to allocate medical research funds so as to maximize the number of life-years saved, 18 without regard to the group identity of those who would be saved. If an incremental dollar spent on research on X would forestall more premature death than a dollar spent on Y, we must spend the dollar on X Such a metric is individualistic and need-based. There is a feature individuals have in common without regard to group identity (aversion to death), and we allocate resources so as to minimize this (universally) negative experience. We might, though, believe that spending to avert deaths with meaning to cognizable social groups has a weight that averting other (group-random) deaths does not. If, in this view, spending to cure or prevent AIDS does not simply save lives but serves also to undo some degree of conventionally expressed disapproval of gays, it may take (at least some) priority. If research on breast, rather than prostate, cancer symbolizes a commitment to the social importance of (historically marginalized) women, it might be justified even if less effective in saving lives. 19 It may well be the case that individuals' welfare is as significantly affected by the sense that they belong to a group held in reasonable social esteem as it is by access to more conventional material goods. To the degree this is so, group-sensitive distributive policies are

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Does Disability Status Motter? 99 not just acceptable but appropriate in situations in which the distribution of goods signifies esteem. Such a distributive metric may be especially apt when we are distributing not cash or cash equivalents (where individual need may be far more significant) but (in kind) opportunities to participate in publicly validated spheres. To the extent that we believe that we can use a regulatory tax to force social inclusion (at work, in public accommodations) that would not occur spontaneously in the market, it seems there are some good reasons to undo social exclusion associated with group membership (e.g., gender, disability status), rather than individual traits (poverty that precludes one from paying for the accommodation, lack of skills that preclude one from getting a desired job). 20 If "disability law" is designed to elevate the material claims to costly social inclusion of those who reasonably identify with a social group that reasonably feels demeaned by its widespread exclusion, then accommodation requests by those with disabilities do have a certain priority. Whether a particular person or persons with a particular trait (such as HIV-positive status), is "disabled" in this sense turns on whether inclusion diminishes the sense that others "in the group" have that their group is unjustly marginalized and mistreated. There appears to be nothing physical or medical that helps us to recognize who is an insider and who an outsider in this sense. Whether (many? all?) people using wheelchairs (reasonably) "identify" with the exclusion that will befall those suffering from depression or dyslexia or asymptomatic HIV-positive status unless they are accommodated is an historically contingent, empirical question. Whether rights ought to turn on whether groups develop this sort of interdependency (to put a positive spin on it) or be linked sensitively to wounds (to give it a more negative spin) is surely open to question, too.

ACKNOWLEDGMENTS Research was supported by the Stanford Legal Research Fund, made possible by a bequest from Ira S. Lillick and by gifts from other friends of Stanford Law School.

NOTES Bragdon v. Abbott, 524 U.S. 624 (1998). sides in the Bragdon case conceded that those who were HIV-positive had such an impairment

1

2 Both

because their immune response system was compromised. 3As a formal matter, questions arose as well in the case as to the relevance of extra textual indices of legislative intention. There is little doubt, looking at typical extratextual sources (committee reports, prior uncontested interpretations of parallel statutes by judicial bodies and administrative agencies) that Congress intended to protect all those who were HIV-posirive. The dissent was forced to rely, therefore, on the perfectly credible view that courts should never look outside the four corners of the stature in interpreting the stature, at least so long as the stature's meaning is otherwise discernible. 4Thus, in this realist tradition, to say that one "owns" one's genetic material is meaningless. One must specifY what "ownership" means in terms of discrete legal powers. Can one (merely) refuse to give it away, or is one permitted to contract to sell it, or can one recover damages if it is used by others (but not sell it)? Does it matter whether the user profits from it or nor? 5 For instance, if the dentist had to hire someone to sign-translate his questions and to translate the patient's replies into oral language, he would not be permitted to charge the patient the interpreter's fees. 6The court will order the accommodation only if it is reasonable. It must be reasonable first in the sense that it is not unduly costly. Under current law, we evaluate whether the accommodation is too costly in part by reference to the capacity of the particular service provider or employer to afford the accommodation, rather than inquiring whether, in some more general sense, we believe the benefits of the accommodation outweigh the social resource costs of providing it. I believe that procedure is indefensible, bur it is surely current practice. We would also ask whether it is a "reasonable accommodation"

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100 MARK KELMAN or an "unreasonable" demand for improvement in service. If the person with a disability is seeking some change in the service structure (or some "aid" at work) which makes the product he is receiving (at ordinary market prices) more desirable for typical customers (or amplifies any worker's product), the change he is seeking is not an "accommodation" to which the ADA entitles him. 7 In Bragdon itself. the dentist claims that he would not serve the client unless the patient paid the bulk of the cost of what the dentist saw as a necessary accommodation, performing the procedure in the hospital. Now the plainriff claims that no accommodation is needed, and that the refusal to treat her in his office is itself simple discrimination (and would be stigmatizing even if she were not asked to pay for the hospital treatment). The dentist claims, though, that the refusal to treat her at ordinary prices in an ordinary setting stems from the ways in which she is distinct in relevant ways from his other patients: he says that she is riskier to treat. In a sense, the plaintiff is complaining that the dentist has engaged in simple discrimination (falsely claiming that she cannot be treated in the conventional office setting). If this claim were rejected, though, I imagine that the patient would then complain that if she indeed requires accommodation (i.e. she is riskier to treat), she cannot be charged for the cost of providing these accommodations, both because they are not unduly costly and because they do not represent improvements in service that nondisabled customers would seek, but distinctions in service necessitated by her disability. 8Thus we can ascertain that there is "discrimination'' against both males and females who are physically unattractive only by looking at whether a large number of people deemed unattractive receive rewards commensurate with predicted productivity, though the "unattractive" may not form a conventional social group, a subculture, or a voluntarily created political association. 9If, though, the question is whether it is worth investigating whether HIV-positive persons might be subjected to irrational treatment, the answer is plainly that it is. I return to this issue when I discuss in more detail why disability status may matter. 10 0nce more, it would seem that prejudice against those who are HIV-positive is widespread enough, rather than idiosyncratic, that one would think that from this viewpoint, relying on marketbased rather than state-based correction for prejudice would be ill advised. Again, we return to this issue. ''Thus, for example, a hearing-impaired worker might seek communication devices that permit her to read a supervisor's commands; a blind worker might require a reader or an expensive printer that generated Braille copies of texts that she received. 12 If the employee can satisfy the decision-maker who is responsible for determining whether she is entitled to prevail in an antidiscrimination suit that she produces as much over the course of her employment as other workers though she works fewer hours, then she is really not asking for an accommodation. Instead, she is claiming that the employer's insistence on "normal" schedules is a form of simple discrimination. (The employer might argue that while she may as an individual produce as much working irregular hours as others produce working more conventionally, permitting atypical schedules imposes costs on others in the firm--either morale costs or administrative costs. If that is the case, then this is an accommodation claim.) Note, more generally, that disability rights advocates quite typically argue, quite persuasively in my view, that the failure to grant accommodations is a form of simple discrimination because the accommodations are not in fact costly, though bigoted or ignorant employers assume that accommodating difference will be. I discuss the demand for accommodation as a separate form of antidiscrimination claim on the supposition that there are situations in which the public accommodations owner or employer is correct that it is more costly to serve some customers or to give them the capital equipment support that permits them to generate the same output their fellow employees do. 13There is one serious qualification in this regard, worthy of an entire separate essay. Should an employee who is physically unable to do some particular job without an accommodation, but would be capable of doing a range of other jobs without accommodations, be entitled to one? In formalistic legal terms, the question is whether the plaintiff should be deemed unable to perform a significant life activity when she is able to work if she is unable to perform some subset of activities (e.g. lifting, sitting still as long as one must to perform a particular job) useful for the job the plaintiff most prefers. It strikes me as quite plausible, bur by no means obvious, that the accommodation requirement of the ADA was and should be designed to subsidize people who would not otherwise work, not to provide an incomemaximizing subsidy. One could argue that the statute was especially directed at overcoming the social isolation and exclusion that accompany joblessness. Moreover, one could argue that an accommodation is unreasonable (even if not especially expensive) insofar as it is far costlier for the particular employer than it would be if the employee chose to work in some other setting. In this sense, we may believe that

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Does Disability Status Matter? 101 a plaintiff who needs accommodation in only a small subset of settings ought to work somewhere where he does not need them. Alternatively, he should pay for them himself if he chooses to receive them though he does not need them in all settings. On the other hand, one can surely hypothesize cases in which a plaintiff would claim that he would be radically underemployed given his skill level, though he could find some work, unless accommodated in his "ideal" setting. The statute was arguably designed to prevent those with strong underlying skills from being unable to exercise them. 14Some might claim that they would be distracted; some might claim that they would be exhausted trying to do too many things in a day. 15 1 focus in this essay on the "beneficiary" side. There are substantial questions as well about whether it is appropriate to levy such a regulatory tax on employers or public accommodations owners rather than to spread them more broadly. 16Bragdon is an especially complex case for reasons I do not have space to detail. HIV-positive persons are victims of both homophobia and conventional phobic prejudice against those with diseases, especially diseases that are poorly understood by significant parts of the population. HIV-positive plaintiffs may both face persistent mistreatment because of aversion to gays and because of aversion to the ill. (Similarly, to anticipate the next argument in the text, they may suffer more from such mistreatment because it demeans them in both group statuses.) While gays and lesbians are clearly subject to all the sorrs of harms the antidiscrimination norm is designed to protect against, they are not a congressionally protected class. (Presumably, many legislators believe that persistent mistreatment of them is justified or that stigma is warranted.) 17In the hate-speech context, there is widespread agreement that nasty speech is more stigmatizing and damaging when directed at one because of one's group status. It is more controversial whether there is a significant distinction between the stigmatic injury felt by members of historically subordinated groups than dominant groups: Are the stigmatic injuries distinct when African-Americans are called "dumb niggers" rather than when white males are derided as "dumb hankies," assuming both are more stigmatizing than simply being called "dumb"? 18 I ignore in this piece a host of complex empirical and ethical issues. Would we really know, ex ante, the expected effect of spending incremental funds researching a particular disease? If we assume that the research results in a new treatment that alters mortality and morbidity at different ages, do we have any noncontroversial scale to measure the improvements created in terms of improvements in the Quality Adjusted Life Years that people will experience? 19There ·are a number of reasons that one might believe that we should care about the group identity of those to whom we distribute resources (particularly in-kind resources like opportunities). For instance, certain group members may have strongly interdependent welfare functions; the success of some group members may serve to encourage others in the group to higher levels of achievement. 20 In part, this no doubt reflects the problematic acceptance of the notion that those lacking market skills feel justifiably excluded. They lack market productive skills, the most relevant trait that merits higher status in the culture. Thus, even if their exclusion is just as esteem-defeating as the exclusion of group members who require accommodation, the lack of esteem seems irremediable. The view that social groups seeking accommodation deserve esteem equal to that of historically dominant groups is based as well on the supposition that the need for accommodation is caused in significant part by the fact that existing institutions accommodate the dominant. In this view, the expenses of court-ordered accommodation arise simply from the failure to establish work settings favorable to the subordinated group. Thus, flextime schedules are costly when they are atypical; men designed "typical" work-time schedules with their work styles in mind. Persons with physical disabilities cannot use existing capital equipment designed for the able-bodied; the equipment they need is not intrinsically costlier. I am skeptical that this view of the accommodation problem is correct. Whether it is or not fundamentally an empirical issue, though, it is not one that has been subjected to much empirical study.

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Part II Theories of Equality and Inclusion

[7] Disability Equality: A Challenge to the Existing Anti-Discrimination Paradigm? SANDRA FREDMAN*

D

1 INTRODUCTION

the UK has developed in distinct strands, through separate pieces of legislation for gender, race and disability, and the establishment of three independent Commissions. However, with the introduction of three new strands,' and the imminent creation of a single equality body responsible for all strands, 2 it is crucial to consider the extent to which a single concept of equality can be developed to cover all kinds of discrimination. In this chapter, I examine the background concepts and controversies which have motivated discrimination law, contrasting trends in respect of race and gender with those in respect of disability. I argue that a possible way forward lies in the principle of social rights which impose positive obligations to promote equality. A duty to promote equality potentially bridges the gap between the two traditional approaches to tackling inequality: the legal strategy, via anti-discrimination legislation, and the social welfare strategy, which is sometimes seen as patronising and disempowering. The duty to promote equality, based on social rights, uses the force of legislation to encourage policy initiatives which are appropriate in that they further the aims of the equality agenda rather than obstructing it. Gender, race and disability legislation have followed interlacing but essentially distinct paths. At the start, the gender and race anti-discrimination statutes were moulded according to the same basic structure. More recently, they have diverged. Gender legislation has been influenced primarily by EU ISCRIMINATION LAW IN

* Professor of Law, University of Oxford. I am indebted to Deborah Mabbett for her very helpful comments on earlier drafts. The errors are all my own. 1 Religion, sexual orientation and age. See Council Directive 2000/78/EC of 27 November 2000 establishing a general framework for equal treatment in employment and occupation. 2 Together with active steps to create single equality legislation in Northern Ireland.

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law. Race laws, on the other hand, have developed primarily in response to domestic events. The revelation of widespread institutional racism in the police forces resulted in the Race Relations Amendment Act 2000, which heralds a new generation of discrimination law, focusing on a positive duty to promote equality. Although such legislation has been pioneered in the fair employment legislation in Northern Ireland, gender has yet to be incorporated into it. Disability, however, has always been viewed as distinct from gender and race discrimination law. It was not until 1995 that it gained official recognition as a discrimination issue, in the form of the Disability Discrimination Act (DDA). Until then, disability had been largely seen as falling within the terrain of social welfare law with the isolated exception of the scarcely used quota system. 3 The DDA was given a different shape from that of the Race Relations Act 1976 (RRA) and the Sex Discrimination Act 1975 (SDA). Most importantly, it included a stringent threshold hurdle in the form of the definition of disability. In addition, it did not expressly prohibit indirect discrimination and it permitted direct discrimination to be justified. It also allowed employers under a certain size to discriminate against disabled people. On the positive side, the DDA foreshadowed the positive duty to promote equality by including a duty to make reasonable adjustments. Very soon, the courts were stressing that the model used in the DDA was different from that used in the established statutes. 4 This insistence on a different model for disability has persisted despite the unified approach taken by the EU Framework Employment Directive,' which the UK was required to implement by the end of 2003. Even though the Directive uses a very similar model for disability as for the other strands, the amending regulations simply graft the changes on to the DDA, the aim being to disturb the existing model as little as possible. 6 For example, the Directive does not include a justification defence for direct discrimination; 7 rather than disapply the justification defence in relation to the existing form of discrimination contained ins 5(1) (less favourable treatment for a reason relating to disability}, the regulations have 'carved out' what might be termed 'pure' direct discrimination and disapplied the justification solely to that. 8 Indirect discrimination, while specifically provided for in the directive, is not mentioned in the Regulations, the assumption being that it is covered by the existing duty to make reasonable adjustments. The only real innovations are the removal of the small employer exception, separate coverage of work placements and qualifications bodies, and the inclusion of a harassment provision. 9 3 4

5 6 7 8 9

Disabled Persons (Employment) Act 1944. Clark v Novacold [1999] 2 AllER 977. Above, n 1. DDA 199.5 (Amendment) Regulations SI 2003/1673. Above, n 1; Art 2. Above, n 6; reg 4 inserting news 3A (see, in particular, s 3A(4) and (5)). Ibid, reg 4 inserting new s 3B and reg 7.

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Outside the UK, however, disability is not always viewed as necessitating separate legislation but is, instead, included as one of a number of listed grounds. 10 The most important example of this approach, for present purposes, is the EU Framework Employment Directive. 11 To what extent, then, are there overarching equality concerns common to disability discrimination, on the one hand, and to race and gender discrimination on the other? How can the lessons learned from each context be synthesised into a harmonious model for the future? In this chapter, I take some tentative steps towards exploring this issue. I do so by examining the development of notions of equality and the parallels and contrasts between disability, race and gender legislation. Three main themes will be considered: the difference-equality debate, the move from individualism to minority group rights and then to universalism and, finally, the costs of equality. I then examine briefly how this has impacted on disability legislation, before making some very tentative proposals as to the way ahead. 2 DIFFERENCE vs EQUALITY

2.1 Difference as Inferiority There are strong historical parallels between patterns of discrimination against women, blacks and disabled people. The right to equal treatment was extended only to those who were characterised as equal; but women, blacks and disabled people were, it was claimed, relevantly different. Aristotle, for example, characterised women as 'mutilated males' 12 and the view of women as weak, irrational and defective continued through feudalism and into the liberal era. The appeal to difference was the key way in which the contradictions between the liberal ideal of equality and the subordination of women were addressed. Rejecting a proposal to extend the suffrage to women in 1892, Asquith justified his position by arguing that '[Women's] natural sphere is not the turmoil and dust of politics but the circle of social and domestic life.' 13 Similar arguments were used to exclude wo~en from higher education and the legal and medical professions and, more recently, to justify lower pay and poorer conditions. 14 There are strong 10 See eg Canadian Charter of Rights and Freedoms s 15(1); Constitution of the Republic of South Africa s 9; South African Employment Equity Act 1998 s 6. 11 Moving in the opposite direction, however, is the strong lobby within the United Nations to create a new international treaty on disability. 12 Aristotle, 'The Generation of Animals' 737a 28, 775a 15 in J Barnes (ed), The Complete Works of Aristotle (Oxford, Oxford University Press, 1982); see generally S Fredman, Women and the Law (Oxford, Oxford University Press, 1997) 3ff. 13 Asquith III Hansard Pari Deb 4th Series 27 April 1892, c.1513. 14 See furtherS Fredman, Women and the Law (above n 12) chs 1-3.

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parallels with the justifications offered for excluding and segregating disabled people and subjecting them to detrimental treatment. Exclusion from participation in public life on equal terms did not always take the form of express stigmatic treatment. Some measures were characterised as 'special' or 'protective' measures, ostensibly aimed at helping or protecting the weaker sex or the disabled group. 'Protective legislation' which equated women with children, so far as limits on working hours or working underground were concerned, has aroused heated controversy. 15 While these were measures which should have been extended to everyone, their restriction to women inevitably disadvantaged them in the labour market as well as characterising women as weak and in need of protection. This is even more apparent in respect of social security, where gender inequalities have been reinforced and even generated. Instead of treating women as autonomous individuals with self-standing social rights, benefits were frequently premised on the dependence of women on male breadwinners and on their role as homemakers. The result was not to achieve equality but to reinforce difference." Similarly, for many decades disabled people were depicted 'not as subjects with legal rights, but as objects of welfare, health and charity programs' .17 The underlying social policy of exclusion and segregation was justified by the pervasive belief that disabled people were incapable of coping with social and other major life activities. 'Welfare' was given at the price of exclusion and loss of self determination. In the employment field the only measure was one establishing 'special protection' for disabled people. The Disabled Persons (Employment) Act 1944 required employers of a substantial number of employees to employ a set quota of people registered as disabled. Not only was compliance with the Act negligible, quotas were also based on the assumption that disabled people were less able and needed protection. 18 Different treatment was so entrenched as a mindset that the major international human rights documents did not even mention disability as one of the grounds to be protected against discrimination. This is true both of the European Convention on Human Rights (ECHR) and the International Covenant on Civil and Political Rights (ICCPR). 2.2 Equality as Sameness The logical response to the subordination of women, blacks and disabled people is to argue that they are not relevantly different and that they Ibid 67-74. Ibid 83-94. 17 T Degener and G Quinn, 'A survey of international comparative and regional disability Law Reform' in From Principles to Practice: An International Disability Law and Policy Symposium, October 2000, 3. 18 Degener and Quinn (ibid) 11. 15 16

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accordingly qualify for equal rights. Early feminists therefore argued that women had equal rights because 'the nature of reason must be the same in all' ! 9 Equality, however, meant no more than formal equality or a demand that like should be treated alike. This required the assertion that women or blacks should not be automatically assumed to be inferior, but should be treated as individuals on their own merit. It soon became clear that equality as sameness, by requiring as a precondition for like treatment that two individuals could be shown to be relevantly alike, simply privileged the dominant norm. Clearly, treating two people alike, where one comes to the situation already burdened with disadvantage, will do no more than perpetuate the disadvantage. In Catherine McKinnon's memorable words, women rejected the difference paradigm only to find that equality meant conformity to a male norm. 20 The way forward was therefore a more substantive notion of equality, which reconfigured the norm itself. A similar process is evident in relation to disability. Characterising disability as an irrelevant characteristic removes the underlying justification for detrimental treatment, but insisting on similar treatment simply reinforces a particular norm and perpetuates disadvantage. As in gender, this illuminates the sterility of the equality-difference debate itself. Instead of requiring disabled people to conform to existing norms, the aim is to develop a concept of equality which requires adaptation and change. Within disability discourse, this is reflected in the move from the medical to the social model of disability. Thus a much richer, substantive notion of equality has developed, embracing a wide range of concepts such as equality of opportunity and equality of results. I consider below how this concept might be understood in the context of disability. First, however, it is necessary to follow the development of the second major current: that of the relationship of the individual to the group. 3 FROM INDIVIDUAL TO GROUP TO UNIVERSALITY

3.1 Individuals and Merit Individualism is a fundamental tenet of liberal equality law. On this analysis, the chief mischief of discrimination is that a person is subjected to detriment because she is attributed with stereotypical qualities based on a denigratory notion of the group of people with similar qualities. Individualism requires that the individual be treated on her individual merits and regardless of her group membership. These aims have an immediate appeal. 19 2

M Wollstonecraft, Vindication of the Rights of Women (Penguin Classics, 1983 ), 1.

° C McKinnon, Feminism Unmodified (Cambridge, Harvard University Press, 1987) 32-45.

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It seems logical to respond to the identified problem of discrimination by requiring that each person be treated as an individual, according to her own merits. However, the stress on individualism is problematic for three main reasons. 21 First, it buys into a liberal ethic which portrays individuals as primarily driven by their own rational self interest. Individualism therefore downgrades activities motivated by genuine care for others and fails to appreciate the value and importance of community and inter-relationships. Second, this approach assumes that discrimination is an individual problem, whereby an individual perpetrator causes detriment to an individual victim. Redress should therefore be sought against the individual at fault and take the form of an individual remedy. Yet much discrimination cannot be attributed to individual acts by specific perpetrators but flows, instead, from the institutions and structures of society. This is particularly true in the disability context. The third problem of individualism is its assumption that individual merit can be quantified in an objective way, abstracted from the social context in which it is located. In fact, of course, merit is itself a social construct. Far from being abstract, it is judged in relation to the qualifications deemed necessary for a job, an educational opportunity, or other benefit. Only those relevantly qualified 'merit' selection. Yet individuals may lack the capability to achieve the relevant standard precisely because of entrenched social disadvantage or physical attributes, such as pregnancy or impairment. In addition, despite their apparent objectivity, merit criteria can incorporate the very discrimination they purport to eliminate. For example, the simple assumption that only non-disabled people can do a specific job incorporates discrimination into an apparently objective merit criterion. Equally importantly, a focus on 'merit' assumes that the individual should fit the job, rather than that the job should be adjusted to fit the worker. In fact, if equality is to make an impact, appropriate adjustments must be made to the environment to accommodate difference.

3.2 From Individualism to Minority Group Rights Recognition of the limits of an individual merit analysis has led to important developments in the contexts both of gender and race equality and of disability equality. The analysis of racism moved away from an attempt to achieve a colour blind society based on individual merit. Instead, racism has been characterised according to a minority group rights analysis. This analysis recognises that black people as a group are a discrete and insular minority, who have suffered from a history of discrimination, who are relatively powerless politically and who are socially excluded. The parallels 21

See Fredman (above n 12) 14-15.

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with disability are clear; disabled people are also characterised as a discrete and insular minority, who have suffered from a history of discrimination and who are relatively powerless politically and are socially excluded. Two aspects of the minority rights approach in respect of race seemed particularly apposite for disability: identity politics, and an analysis of dominance and subordination. Identity politics, as explained by Young, seeks to transform a historically stigmatised attribute, such as colour or race, into a positive aspect of group identity. 22 The analysis of dominance and subordination used by McKinnon in the feminist arena has similarly been used to support a minority rights analysis. Thus, Hahn argues: [F]eatures of architectural design, job requirements and daily life that have a discriminatory impact on disabled citizens ... support a hierarchy of dominance and subordination between non-disabled and disabled segments of the population that is fundamentally incompatible with legal principles of freedom and equality. 23

The advantage of this analysis is to emphasise the political and social aspect of disability over the medical model. Disabled people call, not for charity, but for rights based on the need to redress unfair prejudice and a history of political, social and economic disadvantage. The analysis also stresses community relationships and the need for inclusiveness. Strategically, this approach has been very productive. It was the central motivating force behind the Americans with Disabilities Act 199024 (ADA), which draws explicitly on the race discrimination model in the Civil Rights Act 1960. The ADA states expressly that: Individuals with disabilities are a discrete and insular minority who have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals and resulting from stereotypic assumptions not truly indicative of the individual ability of such individuals to participate in and contribute to society. 25

Disability statutes in several other countries have expressly adopted this model, the best examples being the Australian Disability Discrimination Act 1992 and the UK DDA. Indeed, Bickenbach et al argue that, as a political strategy, this approach and the movements to which it has given rise 'can 22 I Young, justice and the Politics of Difference (Princeton, Princeton University Press, 1990). 23 H Hahn, 'The political implications of disability definitions and date' (1993) 4 journal of Disability Policy Studies 42 at 46-7. 24 104 STAT 327, 42 USC 1210. 25 Ibid s 2(a)(7).

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be credited with nearly every change in attitude and treatment of people with disabilities in the last two decades' .26 3.3 From Minority Rights to Universalism But the minority group analysis also has problematic implications. Most importantly, the minority group analysis depends on viewing disability as a group-defining characteristic. This is problematic both socially and legally. Legally, it depends on identifying people as 'disabled', which has proved notoriously difficult, both in the field of discrimination law and in that of social security. 27 One of the biggest legislative stumbling blocks of the minority group approach has been the definition of disability itself. The ADA, for example, has been seriously limited by restrictive judicial interpretations of the threshold concept of disability. 28 Much litigation in the UK too has been devoted to this issue. This, argue opponents of the minority group analysis, is not just a technical legal difficulty. It reflects the social reality that disabled people do not form a discrete and insular group at all. On this view, not only are the reactions to different forms of impairments very diverse, but there is no sense of solidarity among disabled people. Nor, it is argued, are the leaders representative of the vast majority of disabled people. Normatively, this approach has also meant a return to the equality difference dichotomy. Instead of seeing impairment as a normal aspect of life, it emphasises distinctness. Furthermore, it has been argued that this approach unintentionally reinforces the medical conception of disability, necessitating a view of disability as fixed and dichotomous; either one has a disability or one does not. The ways in which an impairment impinges on one's life must be quantifiable once and for alJ.2 9 Moreover, it leads directly into conflict over the distribution of resources. As Zola (the foremost proponent of this critique) puts it: [S]eeing people with a disability as 'different' with 'special' needs, wants and rights in this currently perceived world of finite resources, they are pitted against the needs, wants and rights of the rest of the population. 30 26 JE Bickenbach, S Chatterji, EM Badley and TB Ustun, 'Models of disablement, universalism and the international classification of impairments, disabilities and handicaps' (1999) 48 Journal of Social Science and Medicine 1173 at 1180. 27 D Mabbett, 'Why have disability categories in social security?' (2003) 11(38) Benefits 163-8. 28 See eg Sutton v United Airlines 527 US 471 (1999); Albertsons, Inc v Kirkingburg 527 US 555 (1999); Murphy v United Parcel Service 527 US 516 (1999). See also M Lynk, 'A dream deferred' (1999) 15 International Journal of Comparative Labour Law and Industrial Relations 329. 29 IK Zola, 'Towards the necessary universalizing of a disability policy' (1989) 67 The Millbank Quarterly 401; Bickenbach et al (above n 26) 1182. 30 IK Zola (ibid) 406.

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A minority group analysis can also create conflicts of interest over the criteria for distribution of resources. Mabbett argues that a skill or talent deficit caused by lack of educational facilities in a deprived area should qualify for the same priority as the capacity deficit of a person with impairments.31 Finally, many fear that in practice this means that policy-makers latch on to the minority group rights approach as a pretext for cutting social security benefits. This critique has led to a strong body of thought which argues that disability legislation needs to move away from the minority rights approach and instead promote a universalist view. Thus, rejecting the minority rights view, which tends to see persons with a disability as a vulnerable population group, the UN Ad Hoc Committee on the Rights of Persons with Disabilities insist that: the data suggest that disability is a normal aspect of life; all kinds of disabilities can happen to all types of people at all stages in their normallifecycles. 32

The universalist view sees disability as fluid and continuous: Disability is not a human attribute that demarks one portion of humanity from another; it is an infinitely various but universal feature of the human condition. No human has a complete repertoire of abilities. 33

This does not mean that universalists call for normalisation. Rather, advocates of universalism call for a policy that 'respects difference and widens the range of the normal'. It is the social distinction which attaches to impairment, and not the impairment itself, which calls for political intervention. 'Disability policy is therefore not policy for some minority group; it is policy for all. " 4 What, then, is the policy prescription of the universalist approach? Central is the call for justice in the distribution of resources and opportunities. From the universalist perspective, designing the environment only for people within a narrow range of ability is seen to accord special privilege to those who happen to fall within that range. Thus, policies should reflect a universal design, not just for buildings and transportation, but also for housing, workplaces and all other aspects of human activity, so that environments and tools are suitable to as many as possible. 35 31 D Mabbett, 'Some are more equal than others: definitions of disability in social policy and discrimination law in Europe', forthcoming in Journal of Social Policy. 32 UN Ad Hoc Committee on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities (New York, 2003), 'Issues and Emerging Trends Related to Advancement of Persons with Disabilities' Doc NAC.265/2003!1, paras 9-10. 33 Rickenbach et al (above n 26) 1182. 34 Ibid. 35 Ibid 1183.

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The non-binding UN Standard Rules on the Equalisation of Opportunities for Persons with Disabilities represent a significant attempt to give effect to this approach. As mentioned above, the approach has also been strongly endorsed by the 2003 Report of the Ad Hoc Committee on the Rights of Persons with Disabilities/ 6 which stresses the concept of the 'new universe of disability'. Some proponents of this approach argue that universalism shows that disability is not genuinely a discrimination issue. 'To be sure there is a social evil, there is injustice and inequality; but of a different sort. 037 A closer look demonstrates, however, that this is only because a narrowly formal and individualist notion of discrimination is used. Thus Bickenbach et a/ characterise 'discrimination' as a wrongful limitation of a person's negative freedom based on an irrelevant feature of the individual. They argue that the basis of discrimination law is an insult to individuals and, therefore, that discrimination law does not apply where disadvantage is created by neutral forces such as economic factors. In fact, as has been argued above, the equality agenda has moved beyond seeing discrimination as merely stigmatic or prejudiced treatment, towards a substantive notion of equality. The policy prescriptions of the universalist model in fact converge strikingly with the notions of substantive equality which have emerged in respect of gender and race. 38 4 THE COST OF EQUALITY

A third major theme in equality law concerns costs, which constitute the hidden but powerful agenda behind much of equality policy and legislation. The ideals of equality and fairness are always tempered by a strong sense, among policy-makers, that equality should not impose 'burdens on business'. To this is added the view that public spending is a political rather than a rights-based issue, justifiably determined by notions of affordability. The rhetoric of burdens on business has changed significantly under New Labour, which has instead focussed on the benefits to business of discrimination laws. 39 Whether the rhetoric of burden or benefit is used, however, the ideal of equality remains firmly bounded by the business needs of employers and macro-economic policies towards public spending. The role of costs is manifested in discrimination legislation both in the criterion of 'reasonableness' and in the justification defence. Thus discrimination may be excused if the employer can show it is justified for business reasons and the duty to make adjustments is bounded by what is reasonable to expect from employers. Underlying this is the policy prescription that NAC.265/2003/1. Ibid 1181. 38 See section 6 below. 39 See further S Fredman, 'The ideology of new labour law' in C Barnard, S Deakin and G Morris (eds), Liber Americorum Bob Hepple (Oxford, Hart, 2004). 36

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employers should not be expected to bear 'unreasonable' expenses or to suffer 'undue hardship' as a result of having to provide equality rights. This has been particularly salient in disability legislation. Until 2004, even direct discrimination could be justified under the DDA 1995, in stark contrast to the sex and race discrimination legislation, where a justification defence to direct discrimination has always been rejected. Moreover, the courts were quick to hold that the standard required to establish the justification defence for less favourable treatment was low. The defence was made out as long as the employer could show that the reason for the discrimination was material and substantial, and a reason would be substantial if the employer's decision did not fall outside the range of reasonable responses to known facts. 40 The Court of Appeal itself in a subsequent case admitted that the 'threshold of justification has been consistently recognised as a surprisingly low one.' 41 As Lindsay P put it: [t]his is a conclusion which we do not reach with enthusiasm, ... but the remedy for the lowness of the threshold, if any is required, lies in the hands of the legislature and not the courts. 42

A similar assumption permeated the structure of the duty to make adjustments. Here the employer had two bites of the cherry. First the duty was only to make reasonable adjustments, and in determining whether adjustments were reasonable, the costs incurred by the employer and the extent of the employer's resources are to be taken into account. 43 Even if the adjustments were reasonable, the employer could still justify the failure to make such adjustments. 44 The clear risk was that an employer could use the same arguments in the justification defence as had been addressed to the reasonableness of the adjustments. This weighting in favour of the employer has been somewhat mitigated by recent statutory changes and a softening of the judicial approach. Thus recent amendments to the duty to make reasonable adjustment has removed the justification defence, so that the weight of the employer's argument must rest on the reasonableness of the adjustment. 45 The courts were in any event showing themselves more willing to construe the justification defence strictly in relation to reasonable adjustment. 46 The defence to direct discrimination is more complex. EU legislation requires Member States to introduce a provision outlawing direct discrimination without permitting a justification defence. However, the UK government 40 41

42

43 44

45 46

Jones v Post Office [2001] IRLR 384, [2001] EWCA Civ 558 (CA). Collins v Royal National Theatre Board Ltd [2004] EWCA Civ 144 (CA). Heinz v Kenrick [20021 IRLR 144 (EAT), p 146 para 16. DDA, s 6(4). Ibid s 5(2)(b). Ibid s 3A. See above n 41.

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remained reluctant to depart wholly from the overriding assumptions that employers should not be burdened. Thus instead of removing the justification defence entirely from the direct discrimination provisions, it introduced a second, narrower definition of 'direct' discrimination which cannot be justified, leaving the original, broader definition intact, including the justification defence. 47 The difference relates primarily to the width of the comparison. According to the first, original definition, an employer discriminates against a disabled person if, for a reason relating to disability, the employer treats him or her less favourably than others to whom that reason does not apply, and the employer cannot show that the treatment is justified. 4 ' The newer definition requires the complainant to find a comparator who does not have 'that particular disability and whose relevant circumstances, including his abilities, are the same as, or not materially different from, those of the disabled person'.49 It is only this narrower version which does not have to be justified. 50 Missing in this statutory framework is any express recognition that shifting the cost away from the employer will not make it disappear. Unless another cost-bearer is found, it falls on the individual disabled person. Within employment discrimination law, the debate is usually conducted as if the employer were the only cost-bearer. A similar debate occurred in respect of pregnancy discrimination,' 1 the argument being that it was unreasonable to expect the employer to bear the costs associated with pregnancy. It was also argued that forcing employers to bear the cost would deter them from employing women in the first place. The analysis needs to be broader than this. There are three potential cost-bearers: the employer, the individual and the State. As Humphries and Rubery argue: Many costs and benefits associated with economic well-being are not captured in the accounting framework adopted by single organisations; even at the national level, the tendency has been to sum up the estimated costs to individual employers without reference to the effects on other areas of economic and sociallife. 52

The question should therefore be one of distributive justice; how can the cost fairly and efficiently be spread? In the case of pregnancy and parenthood, the key was to place the cost on the State in the form of Statutory Maternity 47 Disability Discrimination Act 1995 (Amendment) Regulations 2003 SI 2003/1673 inserting s 3A(1). 48 DDA 1995, s 5(1). 49 Disability Discrimination Act 1995 (Amendment) Regulations 2003 SI 2003/1673 inserting s 3A(5). 50 Ibid inserting s 3A. 51 See S Fredman, 'A difference with distinction: pregnancy and parenthood reassessed' (1994) 110 Law Quarterly Review 106-23. 52 J Humphries and J Rubery, 'Some lessons for policy' in 1 Humphries and 1 Rubery (eds), The Economics of Equal Opportunities (Manchester Equal Opportunities Commission, 1995) 399.

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Pay. In the disability field, the State already bears a range of different costs, but this is not linked directly to the employer's duty not to discriminate or to make reasonable adjustments. The DDA does provide that, in determining whether it is reasonable for an employer to have to make a particular adjustment, regard should be had to the availability of financial or other assistance, 53 but there is no duty on the State to provide employers with such assistance (although the Access to Work scheme run by the Department for Work and Pensions does provide financial support for the needs of disabled employees in the workplace). Far more attention, then, must be given to redistributive questions if progress is to be made. 5 PIONEERING A NEW PARADIGM?

While the disability discrimination legislation has, in some respects, been more limited than race and gender laws the DDA has, in other respects, pioneered a substantive approach. In at least three ways it moves away from the 'equality as sameness' approach towards one based on minority group rights. First, it is expressly asymmetrical. Gender and race legislation deliberately do not target the disadvantaged group, but instead view any gender or race-based criterion as unlawful. This means that it is unlawful to use such criteria even where the goal is to benefit the disadvantaged group. The implicit aim is to achieve a gender neutral, colour blind society. By contrast, the DDA prohibits discrimination only against disabled people. 54 It thus aims, not at neutrality, but at redressing the disadvantage experienced by a specific group. Second, the conformist tendencies of the direct discrimination concept in the race and gender legislation have been mitigated. The established concept of direct discrimination requires proof that a person has been less favourably treated than a comparator of the opposite race or gender. This is based on the principle of equality as sameness, requiring conformity to a white male norm as a precondition for protection. Although on its face the DDA appears to have a similar comparator requirement, from very early on, tribunals and courts found it difficult to identify an appropriate nondisabled norm to function as the comparator. In the seminal Court of Appeal case of Clark v Novacold,S 5 Mummery LJ noted the: futile attempts of the ... courts to find and identify the characteristics of a hypothetical non-pregnant male comparator for a pregnant woman in sex discrimination cases. 56

He therefore deliberately distanced himself from the difficulties experienced under the race and sex discrimination legislation in identifying the 53 54 55 56

S 6(4)(e).

Archibald v Fife Council [2004] UKHL 32 (HL). [1999] 2 All ER 977. Ibid para 63.

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characteristics of a hypothetical comparator. Instead, he held that the question was how a non-disabled person would be treated. The result is to minimise the role of the comparator, with the effect that it becomes unlawful simply to subject a person to detriment on grounds of their disability. It will be recalled, however, that the new provision on direct discrimination resurrects the focus on a comparator, requiring the complainant to find a comparator who does not have 'that particular disability and whose relevant circumstances, including his abilities, are the same as, or not materially different from, those of the disabled person'. 57 Third, and most importantly, recognition that equality requires more than sameness results, in the form of the duty to make reasonable adjustments, in an explicit requirement that the norm be changed. This duty, modelled on the duty to make reasonable accommodations in the ADA, is in many senses a precursor to the positive duty to promote equality, or the fourth generation equality rights, allied to substantive equality. However, to the extent that the DDA adopts a minority group rights approach, it also incorporates its major difficulty; that of defining the disabled group. A demarcating feature must be identified which sets the protected group apart from others. Thus, a person can benefit from the protection of the Act only if she: has a physical or mental impairment which has a substantial and long-term adverse effect on [her] ability to carry out normal day-to-day activities. 5 8

Many applicants have been excluded by this definition. At the same time, the DDA is not fully within the minority group rights paradigm. It is severely constrained by the continuing adherence to individualism. Thus, the DDA does not include a provision prohibiting indirect discrimination, disability being considered to be too individual a matter. This contrasts with legislation elsewhere. The ADA, for instance, has always had an indirect discrimination provision 59 and the EU employment directive has had little difficulty incorporating one. The Canadian Supreme Court has recently characterised disparate impact discrimination as the major form of disability discrimination. 60 This individualism is reinforced by the duty to make reasonable adjustments, which, in the context of employment at least, is specifically formulated as an individual duty. In this respect, it is far more limited than the positive duty found in fourth generation equality statutes. This too contrasts with legislation from other jurisdictions, where the group dimension of the accommodation duty 57 Disability Discrimination Act 1995 (Amendment) Regulations 2003 SI 2003/1673 inserting s 3A(5). 58 s 1(1). 59 s 102(b)(3). 60 Eldridge v British Columbia (1997) 3 SCR 624 (Canadian Supreme Court).

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is stressed. Some have already generalised the duty of accommodation to embrace all grounds of discrimination. Thus, South African employment equity legislation places a duty on designated employers to take affirmative action, which includes making reasonable accommodation for blacks, women and disabled people. 61 Outside the employment field, the definition of unfair discrimination on grounds of race and gender as well as disability expressly includes the duty to take steps 'to reasonably accommodate the needs of such persons'. 62 The Canadian Supreme Court has taken this a step further, holding that: The principle that discrimination can accrue from a failure to take positive steps to ensure that disadvantaged groups benefit equally from services offered to the general public is widely accepted in the human rights field. It is also a cornerstone of human rights jurisprudence that the duty to take positive action to ensure that members of disadvantaged groups benefit equally from services offered to the general public is subject to the principle of reasonable accommodation.''

Finally, the inclusion of a justification defence for direct discrimination is based on an assumption that the individual should be treated on her merits, and that somehow a distinction should be drawn between limitations based on ability and limitations based on disability. 6 THE WAY FORWARD: SOCIAL RIGHTS AND SUBSTANTIVE EQUALITY

6.1 Substantive Equality

While the DDA makes some gestures towards substantive equality, it has been shown that these remain imperfect. Nor is it clear that a fully fledged minority group rights approach would be appropriate. Is it possible to achieve a new synthesis? In this final section, I briefly consider how such a synthesis might begin to be evolved, drawing on the insights gained from universalism and on the growing experience of the positive duty to promote equality. As argued above, substantive equality moves beyond what was increasingly recognised as a sterile equality-difference debate. Instead, the concept of equality is reconfigured, so that the norm itself is refashioned to incorporate social diversity. In the case of disability, this means that the norm can include the wide range of impairments which might affect anyone during their normal life cycle, whether as a subject or a carer. In other words, 61 62

63

Employment Equity Act 1998 s 15(2)(c). Promotion of Equality and Prevention of Unfair Discrimination Act 2000 ss 7-9. Eldridge v British Columbia (1997) 3 SCR 624 (Canadian Supreme Court) para 79.

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impairment becomes a normal aspect of life. 64 Substantive equality therefore encapsulates the universalist analysis, according to which the aim is not different or special treatment, but universal access to all activities. Substantive equality, understood in this way, requires that social institutions be restructured to reflect the widened norm. This in turn requires a radical departure from the established structure of discrimination law, which does not change institutions but gives compensation retrospectively to an individual who has been 'wronged' on proof of the 'fault' of another. Substantive equality requires a positive duty to promote equality, resulting in proactive structural change. In this way the duty to promote equality bridges the gap between the two traditional approaches to tackling inequality: the legal strategy, via discrimination legislation, and social welfare, via social security. Instead of being condescending and fostering dependence (difficulties often associated with social welfare), the duty to promote equality, based on social rights, uses the force of legislation to encourage policy initiatives which further the aims of the equality agenda. This also reflects the universalist approach. Thus mainstreaming, because it is proactive, makes provision for all potential beneficiaries. What substantive values, then, does equality promote? In my recent paper for the Equal Opportunities Commission, 65 I argued that equality ought to encompass four central aims. First, it should break the cycle of disadvantage associated with out-groups. This means that it cannot be symmetrical. Treatment which imposes a detriment on a disadvantaged group is qualitatively different from treatment which imposes such a detriment on an advantaged group with the aim of redressing disadvantage. Second, it should promote respect for the equal dignity and worth of all, thereby redressing stigma, stereotyping, humiliation and violence because of membership of an out-group. Third, it should entail positive affirmation and celebration of identity within community. Finally, and closest to the goals expressed by the universalisation approach, is the stress on promoting full participation in society. Thus, according to the Disability Rights Commission's Annual Report: When disabled people participate-as citizens, customers and employeeseveryone benefits. So we have set ourselves the goal of 'a society where all disabled people can participate fully as equal citizens'. 66

Participation denotes full and active participation within the community or social inclusion. This is not confined to participation in the workforce but 64 UN Ad Hoc Committee on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities (above n 32) paras 9-10. 65 S Fredman, The Future of Equality in Great Britain (Manchester, EOC, 2002). 66 Disability Rights Commission, Annual Review 2001-2002 (Disability Rights Commission, London, 2002), p 2.

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extends to participation in the community, which is particularly important for those who do not undertake paid work, whether because of disability, age or child-care obligations. Thus, participation is an important means of overcoming marginalisation and social exclusion. Participation also connotes inclusion in major social institutions, particularly decision-making bodies, from the legislature down to the workplace. Participation in this sense is an essential part of the positive duty. Positive duties are prospective, and must be fashioned to fit the problem at hand. They require a continuing process of diagnosing the problem, working out possible responses, monitoring the effectiveness of strategies, and modifying them as required. The participation of affected groups increases the likelihood that strategies will succeed as well as democratising the very process of achieving equality. It could be argued that participation is not part of the universalist analysis, but reverts to the minority group approach, since fair representation or participation can only be measured if the group can be clearly identified. How can it be said that there is under-representation or lack of participation by disabled people unless those who are disabled can be clearly identified? Certainly, the link between participation and definitions of disability needs more consideration. Indeed, participation is itself a complex concept and far more work is needed on its role and meaning. While it is clear that autonomy requires participation in those decisions which affect one's life, the nature of that participation may range from the mere disclosure of relevant information, to consultation, to co-decision-making. Neither is it clear who the representatives of disabled people should be: a universalist approach might suggest a trade union whereas a minority rights view is likely to favour a specific lobby group. Finally, participation might bypass representative structures and concern the individual herself; the move towards personal budget systems providing a good example! 7 Rather than reject participation as an aim, more thought needs to be given to its possible structures and meanings. 6.2 Social Rights A complementary approach is to pursue the equality agenda through social rights. Social rights can incorporate the universalist approach by according rights to all who can make use of them. For example, introducing rights to have the workplace, working hours or other working practices adapted, may benefit a variety of users. This is demonstrated by recently introduced rights for part-time 68 and fixed term 69 workers. Such rights to D Mabbett (above n 31). Part-time Workers (Prevention of Less Favourable Treatment) Regulations 2000 SI 2000/1337. 69 Fixed Term Employees (Prevention of Less Favourable Treatment) Regulations 2002 SI 2002162. 67

68

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equal treatment do not need to be formulated for the specific benefit of a single interest group, but can benefit a variety of users, whether parents of young children, carers of older people, or disabled people. The right to request flexible working 70 introduced by the Employment Act 2002 should, on this view, not be confined to parents with children under five. Social rights, as part of the positive duty, require economic and social programmes to be reoriented to facilitate participation and choice. For example, the European Social Charter states that everyone has the right to independence, social integration and participation/ 1 This places a positive duty on the State to facilitate participation and choice, including government subsidies of supported employment and mainstreaming. A good example of the way in which substantive equality based on social rights operates in respect of disabled people is the Canadian case of Eldridge v British Columbia, 72 which concerned a claim that failure to provide sign-language interpreters in hospitals infringed the rights of deaf people. In upholding the claim, the court stressed two key principles. First, it stated, this was not a claim for special treatment, but only for equal access to services that are available to all. Second, the equality right included a duty to take positive steps to ensure that disadvantaged groups benefited equally from services offered to the general public: To argue that governments should be entitled to provide benefits to the general population without ensuring that disadvantaged members of society have the resources to take full advantage of those benefits bespeaks a thin and impoverished vision of s 15(1). 73

Restating the claim in terms of rights also has an important effect on the weight given to costs arguments. The respondents in Eldridge argued that recognition of the appellants' claim would: have a ripple effect throughout the health care field, forcing governments to spend precious health care dollars accommodating the needs of myriad disadvantaged persons. 74

However, the Court had no difficulty in rejecting the argument: The respondents have presented no evidence that this type of accommodation, if extended to other government services, will unduly strain the fiscal resources of the state. To deny the appellants' claim on such conjectural

70 71 72

73 74

Employment Rights Act 1996, ss SOF and SOG inserted by Employment Act 2002, s 47. European Social Charter para 15 Q36. [1997] 3 SCR 624. Eldridge v British Columbia (1997) 3 SCR 624 (Canadian Supreme Court) para 73. Ibid, para 91.

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grounds ... would denudes 15(1) of its egalitarian promise and render the disabled's goal of a barrier-free society distressingly remote. 75 Ironically, one of the locations in which a social rights approach has unexplored potential to develop is that of the ECHR. This is probably because the equality guarantee in Article s14 is weak and dependent on other substantive rights, and because disability is not expressly mentioned as a protec_ted ground. This has meant that disabled people have relied on other rights, one of the most fertile being the Article 8 right to respect for home and family life. A particularly good example of the potential of Article 8 is found in the case of Botta v Italy/ 6 which concerned the failure of an authority to ensure that a privately owned beach provided accessible facilities for wheelchair users. The Court itself held that there was no breach in this particular case (Italian law already required such facilities to be provided and the case in point was simply an 'occasional lapse'). However, the Commission in its opinion set out two important principles which have the potential to form the basis of a more fully-fledged social rights approach. First, the concept of private life in Article 8 was held to include the right to establish and develop relationships with other human beings. Second, as the concurring opinion of the Commission argued, 77 Article 8 can impose positive obligations to ensure that disabled people are not deprived of the possibility of developing social relations with others. Such obligations include: appropriate measures to be taken, to the greatest extent feasible, to ensure that they have access to essential economic and social activities and to an appropriate range of recreational and cultural activities ... the crucial factor is the extent to which a particular individual is so circumscribed and so isolated as to be deprived of the possibility of developing his personality. Social rights have the potential to add significant force to the substantive equality claims suggested above. Social rights refocus social welfare, not as a privilege, but as a right. Nor is this simply a negative right to be free of interference. As seen in both the ECHR and the Canadian cases, social rights give rise to positive duties on the State to ensure that all citizens have an equal opportunity to benefit from the right. In addition, social rights are afforded to individuals as human beings, not as members of a particular category. As the Botta case illustrates, there was no need for the applicant to argue himself into the 'disability' group because he was claiming a right which was owed to all people as people. The content of the duty on the 75

Ibid, para 92.

Application No 21439/9324 February 1998. Concurring opinion of Mrs J Liddy, Mrs GH Thune, Mm MP Pellonpiiii, N Bratza, D Svaby, A Perenic, HG Schermers. 76

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State to fulfil the right was closely related to the fact of his disability but he did not have to prove his disability in order to benefit from it. 7 CONCLUSION

There is a strong tendency in the literature to portray different models as conflicting and mutually exclusive. The minority group model is contrasted with the universalist model. Similarly, the 'conflictual and adversarial' rights-based stance is set up in conflict with a participatory model; relational and distributional models are seen as mutually exclusive. However, as Balderson and Mabbett show, there is no single approach that covers all issues. A universalist approach, which aims to provide accessibility to a widened range of 'normal', could be highly effective in public spaces and infrastructure. At the same time, individualised approaches are necessary to provide for other kinds of accessibility, such as education or care provision.78 Both of these approaches can be advanced within a framework of positive social rights furthering substantive equality.

78 H Bolderson and D Mabbett, 'Non-discriminating social policy?' Paper given at the Stirling Conference What Future for Social Security?, 15-17 June 2000.

[8]

Critical Race Theory, Feminism, and Disability: Reflections on Social Justice and Personal Identity ADRIENNE AscHI

Since the passage of the Americans with Disabilities Act, those who fight for disability rights can acknowledge some progress in the situation ofpeople with disabilities but can also recognize that the insights from critical race theory and feminism have lessons for the disability rights movement as well. This article considers the application of critical race theory and feminist theory to such topics as who should be able to use the anti-discrimination provisions of the ADA, how to evalua~e the interaction of impairment with environment, di.fforences among impairments and environments and their implications for inclusion of people with disabilities in society, the merits of integration as a goal, and disability-consciousness as part ofpersonal identity.

I. lNIRODUCTION [I]ndividuals with disabilities are a discrete and insular minority who have been ... subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society ..• resulting from •.• assumptions not truly indicative of the ... ability of such individuals to participate in, and contnbute to, society.2

These words form part of the findings and purposes section of the Americans with Disabilities Act (ADA), the 1990 law that is intended to protect people with disabilities from discrimination in, and promote their access to, employment, governmental services, and public accommodations. In the more than ten years since its passage, the law has been subject to analysis and critique from proponents and detractors3 as well as significant challenge in the courts.4 I Ph.D. Henry R. Luce Professor of Biology, Ethics and the Politics of Human Reproduction, Weliesley Coiiege. I wish to thank Ruth Calker for inviting me to examine the lessons of critical race theory and feminism for disability theory and policy. The invitation, and our several conversations as I grappled with these questions, have proved very provocative and stimulating for me, and I can only hope that this essay captures some of what I have learned from our work together. Many thanks go to Taran Jefferies, who not only provided superb logistical and research assistance and became a pro at Bluebook citation form, but also provided inteiiectual stimulation through our discussion of these ideas and moral support that prevented me from deciding the task was too great to accomplish. 2 Americans with Disabilities Act, 42 U.S.C. § 12lll(aX7) (1994). 3 See generally 22 BERKELEY J. EMP. & LAB. L. (2000); 549 ANNALS AM. ACAD. POL & SOC. SCI. {1997); AMERICANS WTIH DISABll.ITIES: EXPLORING IMPUCATIONS OF 1HE LAW FOR INDIVIDUALS AND INSTITIJTIONS (Leslie Pickering Francis & Anita Silvers eds., 2000) (each containing articles analyzing and critiquing the ADA).

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The writings of many critical race theorists suggest that what disability scholars, activists, and legal advocates find so discouraging in court decisions, 4 On February 21, 2001, as this essay is being completed, the Unites States Supreme Court handed down its opinion in a case testing the extent of Congress's power to impose obligations upon the states. As reported in the New York Times,

The Supreme Court today carved out a new area of immunity for the states from the reach offederal civil rights law, ruling that state employees cannot sue for damages for violations of the Americans With Disabilities Act. The 5-to-4 vote was the same by which the court, in a series of decisions over the past six years, has constricted the power of Congress and correspondingly expanded the sphere of state immunity to a degree unmatched in the modem era. In overturning the appeals court's ruling today, Chief Justice William H. Rehnquist's majority opinion concluded that the effort to open the states to lawsuits exceeded Congress's authority. Linda Greenhouse, Justices Give the States Immunity from Suits by Disabled Workers, N.Y.

TIMEs, Feb. 22,2001, atAl.

At least as disturbing as the ruling is the majority's claim that, "[e]ven if it were to be determined that the half a dozen relevant examples from the record showed unconstitutional action on the part of States, these incidents taken together fall far short of even suggesting the pattern of unconstitutional discrimination on which § 5 legislation must be based." Univ. of Ala. at Birmingham Bd. ofTrs. v. Garrett, No. 99-1240, 2001 U.S. LEXIS 1700, at *5 (Feb. 21, 2001). This claim is vigorously disputed in Justice Breyer's dissenting opinion. Garrett, 2001 U.S. LEXIS 1700, at *38-42. Losing this case, as the amici curiae discuss, erodes the protection of people with disabilities from conduct by state governments that historically have been arguably as segregationist and discriminatory as Jim Crow laws were for AfricanAmeticans in the pre-civil rights South. See Brief of Amici Curiae in Support of Respondents, Univ. of Ala. at BirrninghamBd. ofTrs. v. Garrett, 193 F.3d 1214 (11th Cir.) (No. 99-1240). It is also worth noting the majority's attitude toward people with disabilities as captured by the following remarks: '"Thus, the Fourteenth Amendment does not require States to make special accommodations for the disabled, so long as their actions toward such individuals are rational. They could quite hardheadedly-and perhaps hardheartedly-hold to job-qualification requirements which do not make allowance for the disabled." Garrett, 2001 U.S. LEXIS 1700, at*4. Fortunately, as Ruth Calker points out in this personal communication of October 11, 2000, it does not entirely preclude people with disabilities from winning suits against state governments: The correct technical explanation is that Garrett is about whether Congress has the authority to provide a private right of action for damages in actions brought by individuals against the state. Even if the plaintiff loses in Garrett, the federal government can still enforce ADA Title II. In addition, a private individual can still sue for injunctive relief. Finally, it is also the case that section 504 will still be fully available. Letter from Professor Ruth Calker, Grace Fern Heck Faust Chair in Constitutional Law, The Ohio State University College of Law, to Adrienne Asch, Henry R. Luce Professor of Biology, Ethics and the Politics of Human Reproduction, Wellesley College (Oct. 11, 2000) (on file with author).

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lackluster agency enforcement,5 and public opposition is exactly the institutional response that should be expected. Central to critical race theory (CRT), is the view that racism is not aberrant but rather the natural order of American life. Describing the major points of the theory, Richard Delgado writes "Because racism is an ingrained feature of our landscape, it looks ordinary and natural to persons in the culture.... [W]hite elites will tolerate or encourage racial advances for blacks only when they also promote white self-interest."6 There are many valuable messages to be gained from post-civil-rights-era CRT and feminist writing, and thus this essay can examine only a few topics with resonance for disability. To summarize my principal contentions, let me suggest the following: Much of the message of CRT is skeptical about achieving the kind of social transformation that would enable historically excluded groups to achieve and maintain a valued place in American life. The early civil rights strategy of fighting for school integration, integrated neighborhoods, and affirmative action in employment was a strategy that, at best, could help only some people of color to improve their lives. Even for those who could gain material improvements, the dream of integration and a society without racial consciousness itself contained views that endangered the self-esteem and social cohesion of people of color. To the extent that this same message applies to the fight for social change for people with disabilities, I share some of the skepticism about whether the goals are attainable. However, I am not ready to abandon the quest for a society in which human beings are appreciated for abilities and talents, assisted based upon their needs, and where differences in skin color, gender, sexual orientation, and health status are not occasions for exclusionary or pejorative treatment. Like the integrated society discussed by Alan Freeman? and 5 ''Enforcement efforts seem more focused on 'micro,' individual cases. This means lost opportunities, because findings at the individual level often do not lead to an examination of larger systemic issues. Overall, the federal enforcement effort has been uneven, lacking in robustness, and suffering from low visibility in many areas." NAT'L COUNCIL ON DISABILITY, PROMISES TO KEEP: A DECADE OF FEDERAL ENFORCEMENT OF THE AMERICANS WITH DISABILITIESAcr 4-5 {2000). 6 CRITICAL RACE THEORY: THE CUTI!NG EDGE, at xiv (Richard Delgado ed., 1995) [hereinafter CRT: THE CUITING EDGE]. The pervasiveness of disparate, unequal, and pejorative treatment of people with disabilities in the United States is documented not only in Congress's findings and purposes section of the Americans with Disabilities Act. but, as applied to the actions of state governments particularly, in several amici curiae briefs submitted in the Garrett case. I will not try to further document the persistence of discrimination based on disability, but will confine my discussion to the lessons to be learned from the legal scholarship of feminists and critical race theorists as they apply to disability. 7 Alan David Freeman, Legitimizing Racial Discrimination through Antidiscrimination Law: A Critical Review of Supreme Court Doctrine, in CRITICAL RACE THEORY: THE KEY WRITINGS TIIAT FORMED THE MOVEMENT 29, 35 (Kimberle Crenshaw et al. eds., 1995) [hereinafter CRT: THE KEY WRITINGS]:

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the thought experiment of philosopher Richard Wasserstrom,B but rejected by critical race theorists such as Gary Peller,9 I am interested in achieving a society where eyesight is no more consequential for life chances than is eye color. The ideals I espouse here do not commit me to claiming that non-social consequences of being sighted or blind are identical to whether one has blue or brown eyes; however, they do commit me to putting forth an argument about disability and about social justice that appreciates similarities and differences among people with impairments, and between people with impairments and people of other discriminated-against groups.I o

II. PERSPECTIVES AND STORIES AS DATA Critical race theory and feminism contend that the perspectives of the discriminated-against, oppressed individual or group must be better understood by the larger society, and that the law should look not to wrongs of perpetrators but to helping those who have been victims of discrimination. In different words Alan Freeman,II Mari Matsuda,l2 and Patricia Williamsl3 all contend that the public and the courts as the representatives of society, must understand the experiences and responses of people who are regularly mistreated because of

A second and slightly less extreme version of the utopia posits a society in which racial identification is still possible, but no longer relevant to anyone's thinking or generalizations about anyone else.... Race would have become functionally equivalent to eye color in contemporary society. In yet a third version of the integrated society, racial identification persists as a cultural imifying force for each group, equivalent to an idealized model of religious tolerance. Each group respects the diverse character of every other group, and there are no patterns of domination or oppression between different groups.

8 Richard A. Wasserstrom, Racism and Sexism, in PHll.OSOPHY AND SOCIAL IssUES 11 (1980), cited in Anna Stubblefield. Racial Identity and Non-Essentialism about Race, 21 Soc. THEORY & PRAC. 341, 368 n.7 (1995). 9 Gary Peller, Race-Consciousnel's, in CRT: THE KEY WRITJNGS, supra note 7, at 127. 10 My discussion reflects only my own views on these very controversial topics. I represent no organization of people with disabilities in this essay, nor do I claim that all of my views are likely to be shared by the majority of theorists of disability who might evaluate similarities and contrasts with critical race theory or contemporary feminism. Throughout this discussion, I attempt to indicate where I believe many other disability studies/disability rights theorists share my views, and where I suspect that I am in a minority. 11 See supra note 7. 12 Marl Matsuda, Looking to the Bottom: Critical Legal Studiel' and Reparations, in CRT: 1HEKEYWRITJNGS, supra note 7, at 63 (Kimberle Crenshaw et al. eds., 1995). 13 PATRICIAJ. Wll.l.IAMS, THEALCHEMYOFRACEANDRIGHTS(1991).

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their "race."14 Reading ofPatricia Williams being denied the opportunity to shop at a department store, 15 or of how her friend, also African-American, was ignored and then nearly arrested when she asked to have spoiled milk taken off her restaurant bill, 16 and of how their perspectives were discounted by others, I recoil with horror. I also recognize a painful similarity of small and large insults and of having those insults routinely discmmted and re-interpreted by others so that I am wrong, I am too sensitive, or I am unfair to others ''who are only trying to help." Much of the daily discrimination faced by people with disabilities is not the overt hostility of being shot at or lynched, although the institutionalization, involuntary sterilization, and school exclusion documented in University of Alabama at Binningham Board of Trustees v. Garrett are blatant enough; rather, it is the experience of being denied the opportunity to play the social roles expected of one's nondisabled age-peers. Many commentators note that people with disabilities are expected to play no adult social role whatsoever;I7 to be perceived as always, in every social interaction, a recipient of help and never a provider of assistance; I8 and to be more disliked by nondisabled others if they are clearly competent than if they are perceived as incompetent at a task 19 Much personal narrative and social science writing about the experience of having a disability includes stories of indignities at the hands of strangers, neighbors, co-workers, friends, and farnily20_and then having to be told that your interpretation is always wrong.21 The ADA may prevent a local health club 14 I put the term "race" in quotes because the concept of race is itself a disputed one in critical race theory, as the concepts of"impairment," "disability," and "normality" are disputed among disability scholars as will be discussed later in this essay. 15 WilliAMS, supra note 13, at 44-45. 16 !d. at 56-57. 17 See JOHN GLIEDMAN & WIWAM Rorn, THE UNEXPECI'ED MINORITY: HANDICAPPED CHILDREN IN AMERICA 261-63 (1980). 18 Michelle Fine & Adrienne Asch, Disability beyond Stigma: Social Interaction, Discrimination, and Activism, 44 J. Soc. IssUES I, 3, 12 (1988). l9 hwin Katz et al., Attitudinal Ambivalence and Behavior toward People with Disabilities, in ATIITUDES TOWARD PERSONS WITH DISABILITIES 47, 53 (Harold E. Yuker ed., 1988). 20 niustrative are the accounts of social interactions reported in the classic works: ERVING GoFFMAN, STIGMA: NOTES ON TifE MANAGEMENT OF SPOll.ED lDENTIIY (1963); ORDINARY MOMENTS: THE DISABLED EXPERIENCE (Alan J. Brightman ed., 1984); Marilyn J. Phillips, Damaged Goods: Oral Narratives of the Experience of Disability in American Culture, 30 Soc. SCI. & MED. 849 (1990); JOHN HOCKENBERRY, MOVING VIOlATIONS: WAR ZONES, WHEEI.CHAIRS, AND DECLARATIONS OF INDEPENDENCE (1995). 21 Some examples of events that occurred during a two-week period while this essay was my main intellectual focus, and therefore causing me to be especially aware of the impact of routine events: I was asked by an examining physician whether, because I was blind, I needed her assistant to "come in and help you get dressed"; I was told by a bus driver and several

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or public pool from turning me away if I go to exercise or swim, but it will do nothing to help me persuade a group of new friends that I could join them for a carefree afternoon at a lake. To accomplish that I must be prepared to provide my athletic credentials and convince them that they are not "responsible" for my safety. These indignities may be analogous to the unconscious racism captured poignantly in the writing of Charles R Lawrence, III, describing what it was like to be a five-year-old Black child amidst a White teacher and White classmates all enjoying the story of Little Black Samba and then to have your daughter's fouryear-old friend tell you, thirty years later, that the same story is his favorite.22 Like the academic feminists and CRT authors I cite, a growing number of professionals with disabilities, including myself, can point to professional recognition and the joys of doing work we love as well as its relative financial security and social status. Yet like these others, we have all-too-frequent reminders that we are unanticipated participants in workshops or conferences or unexpected guests at social gatherings. Sitting beside a stranger waiting for a lecture to begin at an academic conference, the stranger whispers loudly not "Hello, my name is Carol," but "Let me !mow how I can help you." What help do I need while waiting for the speaker to begin? Why not introduce herself, rather than assume that the only sociability I could possibly want is her help? When I respond by saying that she can let me !mow ifl can help her, she does not get the point and I am all too well aware that the point is subtle; instead she needs to be thanked for her offer and reassured that I will accept it-and then many pleasantries later perhaps we can discuss why we are at the lecture and whether we like it and what workshop we will attend that afternoon. When I complain of countless such incidents to most of my nondisabled friends and colleagues, I am told that I must understand how unusual it is to see a person with a disability in such a setting, that people are awkward, anxious, afraid of doing the wrong thing, only trying to be nice. My friends are right, and I will not get to !mow new people unless I tolerate these encounters and find ways to smile and be gracious and put people at ease. But what of the people who have !mown me for years, who have considered themselves close friends but do not feel comfortable accepting my offers to pick passengers that I must sit down, even though several other bus passengers were already standing on the crowded bus; I was pushed to the :front of a line of customers at a bank, although blindness does not have any relationship to the ability to stand and wait one's turn in a bank line; I was spoken about mther than spoken to-''put her here'' was said to a :friend of mine as we walked into a crowded room to join a meeting; a :friend was described by others not as my friend, but as my "assistant" and my "guide"; a friend of more than twenty years eiq>lained to me that my diStress, irritation, and :frustration were unreasonable responses to people who were ''trying to do the right thing". 22 Charles R. Lawrence, ill, The /d, the Ego, and Equal Protection: Reckoning with Unconscious Racism, in CRT: THE KEY WRITINGS, supra note 7 at 235-36.

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up food as part of a dinner we plan to have; or find themselves reluctant to have me join them when they are meeting new people because they see me as a social liability; or who would prefer that a high-school-age stranger take care of their six-year-old son for an evening than have me do it, even though I have known their son and their home ever since his birth? Making new acquaintances is difficult enough, but recognizing the limits that others' perceptions of blindness place upon important and long-standing friendships is far more painful and discouraging. The law can do nothing about the sorts of informal interactions described above that make up so much of the lives of people with disabilities lucky enough to have the education, jobs, and financial resources to be attending workshops and conferences, or taking vacations where they meet new people. In order for the ADA and other anti-discrimination laws to help people with disabilities truly enter the mainstream, judges and juries will need to learn far more than they typically know about how people with disabilities manage their lives. Anita Silvers is right when she asserts that the burden of proof is high for anyone with a disability who claims that it is not a tragedy to live with an impairment.23 However, it is more than that-the burden of proof is high to show that one can live competently at all.

ill. RIGHTS THEORY AND MODELS OF DISABiliTY Despite the skepticism of much of CRT about the philosophy of liberal civil rights, and despite the conviction that racial minorities would gain only what dominant society would grant,24 CRT departs from many friends in the movement of critical legal studies (CLS) in asserting the importance of rights language and rights laws. Mari Matsuda captures the CRT message well when she says: How could anyone believe both of the following statements? (1) I have a right to participate equally in society with any other person; (2) Rights are whatever people in power say they are. One of the primary lessons CLS can learn from the experience of the bottom is that one can believe in both of those statements simultaneously, and that it may well be necessary to do so.

23 Anita Silvers, Formal Justice, in DISABILlTY, DIFFERENCE, DISCRIMINATION: PERSPECTIVES ON JUSTICE IN BIOETillCS AND PUBUC POUCY 13, 88 (Anita Silvers et al. eds., 1998). 24 See the following reprinted essays by Derrick A. Bell, Jr.: Brown v. Board of Education and the Interest Convergence Dilemma, in CRT: THE KEY WRITINGS, supra note 7, at 20; Racial Realism, in CRT: THE KEY WRITINGS, supra note 7, at 302; and especially, The Civil Rights Chronicles: The Chronicle ofthe DeVine Gift, in CRT: THE CUITING EDGE, supra note 6, at 390; as well as the introductory essays in each book discussing Bell's insights, and the review of Bell's book by Alan D. Freeman, Derrick Bell-Race and Class: The Dilemma of Liberal Reform, in CRT: THE CUITING EDGE, supra note 6, at 458.

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It is important to understand how claims to equality, procedural fairness, and political participation prove so compelling that human beings are willing to die for them25

The organizations and individuals considered part of "the disability rights movemenf' clearly endorse the importance of rights rhetoric and rights laws as essential to their struggle for equality and social participation. Denied access to vote, education, employment, housing, transportation, marriage and parenthood, many people with motor, sensory, cognitive, and emotional impairments-along with an impressive group of legal advocates-have spent decades fighting for legal safeguards to citizenship and social life.26 Using the rhetoric of other disenfranchised groups, disability activists and scholars began to describe their perspective as a ''minority group model" of disability, as contrasted with the previously dominant medical views of having an impairment. According to the minority group view, the physical, cognitive, sensory, and emotional make-up of the individual was not "the problem," but was a problem only because social institutions and human-made environments were created without taking into accoWlt the characteristics of all people.27 Without this bedrock conviction of the importance of legal rights as essential for any meaningful change in the position of people with disabilities, there would be not even the imperfect protections afforded by the patchwork of federal laws including the beleaguered and imperfect Americans with Disabilities Act. No matter how court decisions chip 25 Matsuda, supra note

12, at 66.

26 Typically, people speak of the disability rights movement as developing out of the civil

rights movement and the women's movement, in the late 1960s and early 1970s, with the creation of the Center for Independent Living in Berkeley, California and the formation of Disabled in Action in New York City. See JOSEPH P. SHAPIRO, No PITY: PEOPLE WITH DISABll..ITIES FORGING A NEW Crvn.. RIGHTS MOVEMENf 53-58 (1994). However, some segments of the population of people with disabilities began asserting their claims to protection from discrimination decades before. See FLoYD W. MATSON, WALKING ALONE AND MARCHING TOGETHER: A HISTORY OF THE ORGANIZED BLIND MOVEMENT IN THE UNITED STATES, 1940-1990 (1990) (documenting the first fifty years of the National Federation of the Blind, as only one example of a single-disability group focused on acquiring rights to housing, travel, and employment); see also Jacobus tenBroek, The Right to Live in the World: The Disabled in the Law ofTorts, 54 CAL. L. REv. 841 (1966). 27 For some of the earliest such writings, see FRANK BOWE, HANDICAPPING AMERICA: BARRIERS TO DISABLED PEOPLE (1978); FRANK BOWE, REHABILITATING AMERICA: TOWARD INDEPENDENCE FOR DISABLED AND ELDERLY PEOPLE (1980); GLIEDMAN & ROTH, supra note 17; DUANE F. STROMAN, THE AWAKENING MINORITIES: THE PHYSICAlLY HANDICAPPED (1982); Harlan Hahn, Paternalism and Public Policy, Soc'Y, Mar.-Apr. 1983, at 36. For a more recent scholarly discussion that usefully compares and contrasts the strengths and limits of medical, economic, and minority group models of disability, see JEROME E. BICKENBACH, PHYSICALDISABll..ITY AND SOCIALPOUCY (1993).

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away at its reach, and no matter how poorly federal agencies enforce its provisions, the law provides a tangible assertion that the federal government believes in the moral equality and worth of people with disabilities and believes that people can benefit from, and contribute to, the common life of the society. Recent scholarship argues that the minority group model is inadequate to the task of affording people with disabilities the conditions to turn legal rights into realities.28 There are several reasons for replacing the minority group model with language that speaks of disability as a form of human variation and that calls for a universal design29 and universalizing of disability. First, impairments are multiple and various; the same impairment may affect several individuals differently, depending upon other factors in their environments and in their own lives. The same impairment may affect the same individual differently at different times in life. Second, making notions of impairment equivalent to forms of human variation would reduce the need to decide who is "in" and who is "out'' of the group of people counted as people with disabilities, which has become one of the major methods of denying people protection under the employment provisions of the Americans with Disabilities Act. Third, people with various conditions have a range of needs that influence their ability to take advantage of legal entitlements to education, employment, or public services. Without income to meet certain impairment-related expenses such as medications, transportation, personal assistance services, particular diet supplements, or items of clothing, for 28 Examples of calls for changing the conceptual framework include: Irving Kenneth Zola, Toward the Necessary Universalizing ofa Disability Policy, 67 MILBANK Q. 401 (1989); Jerome E. Bickenbach et al., Models of Disablement, Universalism and the International Classification ofImpairments, Disabilities and Handicaps, 48 SOC. SCI. & MED. 1173 (1999); Richard K. Scotch & Kay Schriner, Disability as Human Variation: Implications for Policy, 549 ANNALS AM. ACAD. POL & Soc. SCI. 148 (1997); and ChaiR. Feldblum, Definition of Disability Under Federal Anti-Discrimination Law: What Happened? Why? And What Can We Do About It? 22 BERKELEY J. EMP. & LAB. L. 91 (2000). Although these writers stress different reasons, I need not differentiate their reasons. 29 ADAPTIVE ENviRONMENTS CrR., INC., UNIVERSAL DESIGN at http://www.adaptenv.org/ universal/default!ISJ? (last visited Feb. 27, 2001): Universal design is a worldwide movement based on the concept that all products, environments and communications should be designed to consider the needs of the widest possible array of users. It is also known around the world as design for all, inclusive design, lifespan design. Universal design is a way of thinking about design that 'is based on the following premises: • Varying ability is not a special condition of the few but a common characteristic of being human and we change physically and intellectually throughout our lives; • If a design works well for people with disabilities, it works better for everyone; • At any point in our lives, personal self-esteem, identity, and well-being are deeply affected by our ability to function in our physical surroundings with a sense of comfort, independence and control. (Leslie Kanes Weisman, 4/99); • Usability and aesthetics are mutually compatible.

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example, individuals may not flourish. Without the assistance of job coaches or other support staff, persons with emotional or cognitive impairments may not receive the individual assistance that pennits them to manage the demands of typical schools or jobs. Without equipment or work schedules adjusted for rest or medical appointments, people with limited energy or with chronic pain may be unable to perform work for which they are otherwise well suited. Scotch and Schriner argue: [T]he minority group model cannot serve as the sole underpinning for disability policy.... [T]he commonly held notion of discrimination nmst be so stretched to include the various barriers faced by people with disabilities that the concept loses some of its precision and thus its utility as a guide to policy. It may be more useful ... to look beyond discrimination to characterize the nature and consequences of a constructed environment that ignores the presence ofpeople with disabilities ... [D]isability thus may be seen as an extension of the natural physical, social, and cultural variability of the human species. Disability could be defined as an extension of the variability in physical and mental attnbutes beyond the present-but not the potential-ability of social institutions to routinely respond. In this ... human variation model of disability, the problems faced by people with disability might be seen as the consequence of the failure of social institutions (and their physical and cultural manifestations) that can be attnbuted to the institutions' having been constructed to deal with a narrower range of variation than is in fact present in any given population.30

Perhaps they are right in arguing that the concept of discrimination is "stretched" when it must incorporate concepts of "reasonable accommodation" in employment, or when such barriers as narrow doors have barred access to a service, lack of telephone relay systems, or needlessly inflexible work schedules. However, I want to argue that absent the pernicious belief that people with disabilities do not contribute to social or economic life and actually drain social resources, there would have been far more willingness prior to legislation to modify the social and built environment to include all the citizenry. I think that a ''human variation" model has many advantages for people with a range of impairments, as I will discuss below, because it removes some of the pejorative "specialness" and "exceptionality''-some of the "us and them" quality-from disability and reminds everyone that human beings come in a variety of physical, mental and emotional make-ups that change over time and may fit well into some sizes of clothing and some environments, but not others unless we make more metaphorical and literal clothing sizes, styles of furniture, and methods of

30 Scotch &

Schriner, supra note 28, at 152, 154-55.

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providing information to accommodate the range of physical, perceptual, and cognitive equipment that human beings possess. What Matsuda, Bell, and other CRT writers contend, which I must concede, is that society will balk at making modifications that include everyone unless dominant members of that society can be perceived to benefit as a by-product of these changes. How often, for example, are the proliferation of curb cuts, ramped entrances, and widened doorways hailed as a benefit for people who push shopping carts, or for parents wheeling baby strollers! I applaud the fact that nondisabled persons may discover the convenience of these architectural changes, but they should not be justified as worthwhile because nondisabled people can enjoy them. They are worthwhile even if no substantial benefit accrues to the shopper or the parent and child using the stroller-which is, after all, an assistive device for young children to be mobile in the world-simply because they do benefit a portion of the population otherwise disenfranchised from our streets and public facilities. In a small, but chilling example of societal resistance to complying with the legal requirements of providing access to mass transit to people with reading disabilities, the manufacturer of new technology told the following story to a convention of 2,500 members of the National Federation of the Blind: a device has been developed that, when installed on city buses, will verbally announce each stop, a great boon to anyone whose vision prevents the reading of street signs.3I According to the regulations developed to implement existing law, bus drivers are expected to announce the stops, even without the device, but the device was developed because of well-known reluctance to do so and noncompliance with the law. However, the manufacturer of this technology revealed to the assembled convention-goers from every state in the nation that not even the installation of this technology was solving the problem of assuring that blind passengers could know where they were; bus drivers were turning off the device because they did not like having it as a routine part of their day. 32 Exactly what prevents the drivers from calling out the stops themselves or from using the device developed and bought to get around their reluctance? Is it that they actually resent having non-reading passengers on the bus? Is it that the sound is more intrusive and monotonous than the same street signs? Is it that the environmental accommodation, the street sign usable by the visual reader, is considered ordinary, but the means that benefits the smaller number of passengers with visual, perceptual, or cognitive impairments is considered

31 Prior to this invention, of course, visually impaired and blind travelers solved this problem by asking the bus driver to announce the stops or asking fellow passengers, if they did not memorize the routes and know the stops from frequent use. 32 Bill Long, Smart Buses: Solving the Problem ofCalling Bus Stops Address, at the 60th Convention of the National Federation of the Blind (July 7, 2000).

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extraordinary, "special," foolish, or wasteful? Should such people not ride the public bus and use even more expensive segregated transit, or remain under constant supervision at even more expense, or simply not be abroad in the land? Will recalcitrant bus drivers call out the stops or at least tolerate the computerized announcements only when they are threatened with job loss, or when "ordinary," nondisabled passengers tell them that they find the announcements convenient so that they need not continually look up from their newspapers, or so they can be roused from dozing during a long ride? Hearing this story, some people had the eerie feeling that perhaps Peter Singer, the bioethicist who believes that parents should be able to end the lives of "severely" impaired newborns if they do not want to raise them, might be right33 Perhaps the world really just does not want people with disabilities to be around after all. Until it is legitimate, respectable, and acceptable .to be a person with a disability in the world, until the nondisabled majority recognizes how ubiquitous impairment is and how likely it is that everyone will experience it themselves or in someone they love, and until the nondisabled majority perceives that the millions of people with impairments are fully human and can contribute in meaningful ways to the economy and the family, that world will fight against every legal or moral claim made upon it to change institutions, cultural practices, and institutional and physical structures to become readily inclusive. Disability policy and politics must speak to the economic and emotional needs of the nondisabled majority to convince them that the accommodations made for people with disabilities in many ways can benefit them, if not directly, then indirectly. They must be persuaded that they, too, are accommodated in all manner of ways by social and architectural structures. AB Susan Daniels, former Social Security Commissioner for Disability is fond of pointing out, only those conferees using wheelchairs "bring their own chairs"; lights, microphones, and loudspeakers are environmental accommodations for those who obtain sensory input by sight or hearing.3 4 Only when something like the Scotch and Schriner model of disability as human variation becomes widespread will it be possible for the majority to recognize that what they expect and demand as ordinary parts of institutional and physical life is no more required or reasonable than the changes that might make it possible for people with impairments to participate in routine activities.

33 PETER SINGER, PRAcrJCAL Ennes 184 (2nd ed. 1993). ("[1]he main point is clear: killing a disabled infant is not morally equivalent to killing a person. Very often it is not wrong at all.") Id. at 191. Peter Singer has reiterated his views in two public presentations in 1999: Address at Princeton University (Oct. 12, 1999), and Address at the 2nd Annual Meeting of the American Society for Bioethics and Humanities (Oct. 29, 1999). 34 Susan Daniels, Address at the Conference of the Association for Higher Education and Disability(July 14, 1999).

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IV. ARE ALL IMPAIRMENTS CREA1EDEQUAL? IMPLICATIONS OF THE VARIETY OF IMPAIRMENTS Unfortunately, the very attempt to define a class of people called "disabled" under the Americans with Disabilities Act, and to indicate which members of the population could claim its protections, runs counter to the laudable goals of including people who have been disenfranchised by societal practices. Remember that the statutory definition of which persons can claim coverage under the Act as persons with disabilities defines a qualified individual in three ways: "(A) a physical or mental impairment that substantially limits one or more of the major life activities of such individual; (B) a record of such an impairment; or (C) being regarded as having such an impairment."35 It thus differentiates between those who have "objective" departures from species-typicality, or what some people might consider ''the truly disabled," and those who are inaccurately perceives as impaired by virtue of a record or of a misclassification. For purposes of medical care and certain rehabilitative services it is important to understand the nature of the departure from species-typicality to provide the correct medication or rehabilitation; for example, people with mobility impairments do not need Braille and people who are blind do not need wheelchairs. For purposes of combating discrimination and unequal treatment that is the purpose of the Americans with Disabilities Act, there is no need to differentiate between the truly disabled and those merely "regarded as" disabled to determine whether there has been unlawful treatment by an employer, a restaurant, or a government agency. Let me put forward the following, possibly radical, proposal: Instead of discussing which kinds of people have impairments or disabilities and which people do not, instead of saying that some members of society are disabled and others are not, we should consider which people cannot perform which activities in given environments and question how to modify the environments so that they are not disabling. Arguably, any person now living could, without any change in his or her physical, cognitive, sensory, and emotional make-up, be considered impaired by some employer, government service provider, place of public accommodation, or educational institution if the individual failed to meet particular standards for acceptance into a program or activity that the organization had established. Instead of discussing impaired individuals, attention should go to determining which environments-which social, physical, bureaucratic, and communication structures--could incorporate the widest array of individuals in all their diversity of capacities and then determine which environments were impairing and how they could be modified. When individuals complained that they were barred from an activity, program, or job because they 35 42 u.s.c. §§ 12101-12213 {1994).

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were deemed outside the range of people the organization could accommodate, society could then decide on a case-by-case basis whether it wished the environment to change or wished to pennit the exclusion of individuals because the environment found their characteristics unacceptable. Arguably, the most important prong of any definition of disability is that of being "regarded as" being impaired. Until society moves to evaluating the inclusiveness of environments, and as long as it insists upon evaluating which members of the population can fit into the existing ones, it would be better to recognize that all claimants under the ADA should be evaluated as having been "regarded as" impaired by the employer or other institution against which they are filing a complaint. Readers may ask whether, on a "human variation" approach to disability, anyone might, at some point in life, believe that she or he should be able to use the Americans with Disabilities Act to claim a benefit, service, or job that they believed had been unfairly denied to them. Was the Americans with Disabilities Act intended for a particular "group" of people, or should it have been? Both disability rights advocates and ADA detractors have noted that many of the employment discrimination cases filed since the enactment of the ADA have not been brought by people commonly thought of as having disabilities, typically persons with visible impairments. In his preface to a group of articles devoted to the Americans with Disabilities Act, economist William Johnson writes: The ADA was clearly intended to provide entitlements to the persons represented by the advocacy groups, and little attention was given to the large number of persons who are identified as part of the disabled community by national surveys. . . . Infonnation presented ... demonstrates that the suits filed under the provisions of the ADA are more likely to come from the larger population than from the target group envisioned by the ADA's supporters. The larger group consists of persons, typically middle-aged or older, with nonvisible impairments, such as arthritis, cardiovascular conditions or chronic back pain that first occurred during adulthood.36

People familiar with cases filed under state and federal disability discrimination laws that existed prior to the enactment of the ADA should not have been surprised, since large numbers of state and federal cases of disability discrimination in employment had been brought by just such members of the population of those with disabilities.37

36 William G. Johnson, Preface, 549 ANNALS AM. ACAD. POL. & Soc. SCI. 8, 8 (1997). 37 Nancy R Mudrick & Adrienne Asch, Investigation and Enforcement of a Disability

Discrimination Statue: Complaints ofEmployment Discrimination Filed in New York State, 7 J. DISABIUIYPOL'YSTIJD. 21,27 (1996).

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I do not believe that this finding should trouble either disability rights advocates or give ADA detractors cause to contend that the law is being misused or being invoked to solve trivial problems. My non-lawyerly conviction accords with my understanding of ADA expert Chai Feldblum's discussion of the problems of definition in which the courts are now embroiled.38 Instead of concluding that a person who uses eyeglasses or blood pressure medication is not a person with a disability for purposes of the Americans with Disabilities Act, it would be much more in keeping with the human variation approach to disability discussed above, and with the philosophy of non-discrimination embodied in Griggs v. Duke Power Co., 39 to permit such people to file complaints of employment discrimination as people who are ''regarded as" having an impairment. The employer would then bear the burden of proving that the employee cannot, in fact, perform the essential functions of the job and that the employer's medical standards are job-related. Permitting more people to claim protection from discrimination does not imply that their claims are correct, or that they can perform the essential functions of a particular job; nor does it suggest that employers are wrong in arguing that "reasonable accommodations" that might be needed by some people with certain conditions would impose an ''undue hardship."40 Such an approach simply calls for employers to ascertain which purported job requirements are truly necessary and which are the results of custom or convenience. Along with other contemporary theorists of disability and of race, I conclude that what constitutes an impairment or disability, as what constitutes a racial category, is socially constructed.41 Such a statement is not news; but law, society, and philosophy of race, sex, or disability are still working out the implications of 38 See Feldblum, supra note 28. 39 401 u.s. 424 (1971). 40 I recognize that persons filing complaints alleging that employers regard them as impaired when they believe they are not impaired will not be claiming a need for employerprovided "reasonable accommodation." They may be claiming that the glasses they wear or the medications they take to control blood pressure are their accommodations to their physical characteristics, but that employers believe those employee-provided accommodations are inadequate or ineffective measures for successful job performance. If the nation adopted the ''regard as" formulation of disability I suggest and analyzed whether a person had been ''regarded as" disabled because of an inability to perform in an existing environment, it would then have to recognize that the "reasonable accommodations" employers may be asked to pay for are necessary only because the existing environment does not permit all potential employees to function effectively. It is an accommodation to the interactions of their biology with the existing, hitherto unaccommodating and impairing environment. 41 Ian F. Haney LOpez addresses the social construction of racial categories in The Social Construction ofRace, in CRT: 1HE CUrnNG EDGE, supra note 6, at 191, and White by Law, in CRT: 1HE CUrnNG EDGE, supra note 6, at 542.

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the idea that formerly given categories are socially constructed. Saying that disability is socially constructed does not imply that the characteristics are not real or do not have describable effects on physiological or cognitive functions that persist in many environments. Just as the medical responses to different conditions are not identical, the social construction approach to disability does not imply that the social/psychological/non-medical consequences of arthritis, muscular dystrophy, Down syndrome, hypertension, attention deficit disorder, or back pain are identical, or that the accommodations, services, and responses to each condition need be identical. Such factors as how observable an impairment is, what physical, sensory, or cognitive/emotional functions are affected, whether it is static or progressive, whether it is predictable or unpredictable in its manifestations, and whether it affects longevity, all may influence the experience of disability for the person who has the condition, as well as for those around such an individuai.42 In different circumstances, the visibility of a characteristic-be it femaleness, weight, hair color, skin color, or navigating in a wheelchair-may influence someone's experiences. Persons with characteristics such as diabetes or asthma that may not be readily observable may sometimes find that their impairments affect a given set of activities and life decisions, whereas at other times they find life flowing smoothly with no thought to their medical label. Although appearing nondisabled when one first meets people professionally or socially may permit the person with diabetes or asthma to avoid the often adverse reactions of others to observable orthopedic, visual, or speech impairments, these so-called hidden disabilities may influence social life such as the food one eats, the places one visits, the activities one pursues for recreation, and so forth. Fearing the adverse reactions of others to the disclosure of a characteristic like diabetes, asthma, treated cancer in remission, a heart condition, or a history of mental illness 42 Not all of these factors have been systematically explored to determine which factors are more important at different times, or whether there is a pattern of responses that makes shortened lifespan more disturbing, for example, than visibility, either to people who live with the conditions themselves or to their associates. For discussions of attitudes toward people with disabilities, see generally, ATITIUDES TOWARD PERSONS WITH DISABlllTIES (Harold E. Yuker ed., 1988); RICHARD F. ANTONAK & HANOCH LIVNEH, lliE MEAsUREMENf OF ATTITUDES TOWARD PEOPLE WITH DISABR..ITIES (1988); Elaine Makas, Positive Attitudes toward Disabled People: Disabled and Nondisabled Persons' Perspectives, 44 J. Soc. IsSUES 49 (1988). For discussions of the psychological impact of disability upon individuals and families, see JoHNS. ROllAND, FAMIT..IES,lLLNESS, AND DISABILITY: AN INTEGRATIVE TREATMENT MODEL (1994); Rosalyn Benjamin Darling, Parental Entrepreneurship: A Consumerist Response to Professional Dominance, 44 J. Soc. IsSUES 141 (1988); Philip M. Ferguson et al., The Experience of Disability in Families: A Synthesis of Research and Parent Narratives, in PRENATAL 'TESTING AND DISABR..ITY RIGHTS 72 {Erik Parens & Adrienne Asch eds., 2000). For classic material on living as a person with a disability, see BEATRICE A. WRIGHT, PHYSICAL DISABn..ITY-A PSYCHOSOCIAL APPROACH (2d ed. 1983).

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produces its own psychological consequences; the stress of hiding may tum out to be as problematic as the feared responses from disclosure. A mother or father might be deeply shaken by learning that a child with cystic fibrosis could die in their thirties but might react with much less concern upon discovering that a child could expect an average lifespan but would have cerebral palsy. A different set of parents, on the other hand, might find the relative invisibility of a child's cystic fibrosis easier to incorporate into their lives than the more easily perceived, and thus possibly more stigmatized, condition of cerebral palsy. My point here is that impairments impinge upon people differently from one another depending upon a host of psychological and social factors that all are external to the biomedical condition. Disability theorist Harlan Hahn characterizes disability as eliciting "existential and aesthetic anxiety'' in others.43 Notable in the history of governmental discrimination and segregation documented in the Garrett case is that people with only certain conditions received some of the most isolating and demeaning treatment.44 The medical model of disability would explain this fact by contending that people with substantial departures from a notion of "species-typical" cognitive, orthopedic, hearing, and visual norms may be the only ones with genuine impairments. But from a social constructionist view, it is only that their characteristics were considered more difficult to incorporate into more environments. People who had such characteristics as ulcers, high blood pressure, or bad backs were more easily incorporated. As environments routinely incorporate members of society- with historically stigmatized labels, the characteristics themselves could become as unremarkable as brown eyes or long hair. There is one such striking example on Martha's Vineyard in Massachusetts in the nineteenth century, as documented by Nora Groce in her book, Everyone Here Spoke Sign Language, in which she explained how common hereditary deafuess ceased to be a disability because all island residents routinely used both sign language and speech for communication.45 .Are there some environments that we do not wish to modify to admit a broader range ofpersons than now ftmction within them? Should the rules of golf be modified to permit Casey Martin to use a cart to travel around the course,46 or do we wish to maintain that playing golf requires a particular complement of physical capacities? We can choose. Can air carriers continue to have vision 43 Harlan Hahn, The Politics ofPhysical Differences: Disability and Discrimination, 44 J. Soc. IsSUES 39, 39 (1988). 44 Brief of Amici Curiae, supra note 4.

4S NORA E. GROCE, EVERYONE HERE SPOKE SIGN LANGUAGE: HEREDITARY DEAFNESS ONMARTirA'SVINEYARD {1985).

46 See PGA Tour, Inc. v. Martin, 204 F.3d 994 (9th Cir. 2000), cert. granted, 121 S. Ct. 30 (Sept. 26, 2000) (No. 00-24).

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standards for pilots that preclude the wearing of glasses as the method of seeing the instruments? Reasonable people and experts on piloting and air safety may disagree among themselves about which physical, sensory, and cognitive abilities are crucial for successful control and navigation of an aircraft, but the debate about Sutton v. United Air Lines, Inc. 47 should have been on the grounds of business necessity, on essential functions of a demanding job, and not on the level of a particular person's impairment in some objective sense, abstracted from the circumstance in which capacity was at issue. Similarly, the Department of Transportation medical standard for truck drivers should be at issue in Murphy v. U.P.S.,48 and not whether the individual had an impairment that prevented him from engaging in a substantial life activity. He was outside the environment that had been established for the job he sought; the relevance of the standard to the job, not his blood pressure in an abstract sense, should have been evaluated. In these recent employment decisions, I decry the philosophy behind courts declaring that people are not sufficiently impaired to claim the statute's protection. Employers may successfully persuade courts to conclude that environments should not be more flexible with regard to a particular individual's characteristics. However, in the instance where an individual is denied a position because of measured blood pressure, for example, the employer should be asked to show why blood pressure of a certain reading disqualifies someone from performing the essential functions of a job, and should not be able to argue that someone with blood pressure of a measured reading is not a person with an impairment under the meaning of the statute. Since the individual is alleging that employment was denied based on the blood pressure, the employer should be required to indicate either that the allegation is false or that it is true and that there is a legitimate, nondiscriminatory reason based on the requirements of the job.49 Are environments infinitely flexible? Each time environmental arrangements are challenged, society, as represented by courts and legislatures, must decide how flexible and inclusive it will be. To those unacquainted with how people with such characteristics as quadriplegia, autism, or limited ability to use or 47 Sutton v. United Air Lines, Inc., 527 U.S. 471

(1999).

48 Murphy v. United Parcel Serv., Inc., 527 U.S. 516 (1999).

49 Although I have not litigated or investigated cases filed under the Americans with Disabilities Act, I base the comments in the foregoing section partly on my years of work dealing with cases of employer-devised medical standards under the New York State Human Rights Law. From 1974 to 1977 and then from 1980 to 1985, I worked with the New York State Division of Human Rights in several professional capacities, examining the legitimacy of employers' vision, blood pressure, and other medical requirements as they applied to positions of truck driver, nurse, lifeguard, and other positions. New York's Human Rights law contained no ''reasonable accommodation" provision, yet that law was successfully used by complainants to show that many employer medical standards were, in fact, not job-related.

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understand verbal language would study, work, or care for children, it may seem impossible; but people with such characteristics are now succeeding in these activities because they have found or constructed arrangements in which they can contribute based on their capacities and receive assistance with facets of life that are difficult. Arguably, that is what everyone does in life. Most lawyers do not repair their automobiles, but society does not degrade them for being "dependent'' upon mechanics. There is no reason to devalue, patronize, or question the legitimacy of someone who obtains spoken infonnation via an interpreter or real-time captioner, or who gets ready for work with the assistance of another human being who prepares meals or puts on clothes. Similarly, the man with limited verbal language who works with support staff to run errands, and who invites others to his home for holidays, conducts customary adult activities of work, being a member of a household, and maintaining a social life. In these environments he is not a person with a disability. If few environments will accommodate his mix of talents and needs, the problem may be the lack of imagination or the lack of will on the part of others. If people labeled as mentally ill are filing complaints of discrimination in employment, it may derive from the existential anxiety occasioned by contact with someone whose behavior may be feared unpredictable, out of their or our control, or whose modes of social interaction startle those with the power to make employment decisions. Perhaps the difficulty they experience in finding employment should be attributed to managerial resistance to incorporating a person with particular characteristics into a fixed environment. People now thought unemployable in one setting may be employable in another setting that adapts to a greater level of human variation. If the social norm becomes one of trying to achieve an adaptive environment that can easily respond to a broad range of talents and needs, then we may be able to accept the occasional institution or setting with fixed standards of perfonnance. Acting on Broadway may legitimately require more experience, skill, and versatility on the part of those who audition than acting in the community theater. Banks, restaurants, and the Internet should be open to all, accessible to and usable by virtually anyone. Most educational and employment situations should fall somewhere between the bank and the Broadway audition, and denials of employment should be based on an individualized assessment of why a particular applicant or employee was unsuitable for a particular job. Fluency with verbal and written language, for example, might be a skill basic to many positions in the contempormy economy. Anyone, who for any reason could not understand or express herself in words in any way would have limited work options; but employers who turned away people who could not communicate fluently should be able to demonstrate why this skill was required for the particular position, and not resort to the statement that "all employees must be able to read and write and communicate at a sixth grade level."

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I started the section by asking whether all impairments were equal and then proposed that instead of speaking of impairments at all, we should be speaking of environments. In noting that only some people who departed from the physical, sensory, cognitive, and emotional norms historically were subject to the most virulent forms of segregation, isolation, and neglect, I am acknowledging that historically and in contemporary society, the different forms of human variation called disabilities draw different responses. Children and youth with cystic fibrosis or diabetes, for example, are not typically isolated from others in their same grade in rooms for the disabled, but children with other characteristics deemed more challenging for the typical environment are still often educated in separate spaces. When they complete their education, those with cystic fibrosis or diabetes are likely to have an easier time finding work than someone with manual, but not linguistic or mathematical, skill. People who do not stand out by appearance or speech occasion no "aesthetic anxiety'' in restaurants and movie theaters, and if they hide the fact of their epilepsy or back pain from others, they may go through much of their life without triggering the existential anxiety Hahn describes as an explanation for the discriminatory treatment that the ADA is designed to combat. Within the large group of people who may not fit into existing environments and social arrangements, some have been and may continue to be considered more challenging to existing arrangements than others. But if we take the human variation model seriously, we should be questioning the arrangements for failing to include, rather than assuming that the arrangements are fine as they are and concluding that it is the personal deficiency that prevents certain people from participating. V.lNTEGRATION ASA GoAL?

In discussing the justifications for ending de jure and de facto segregation based on race, commentators from within critical race theory point out that implicit in the championing of "integration" was the idea that Black-White contact was good for Blacks because White-controlled institutions were selfevidently superior to those in the Black community.SO Quoting Malcolm X, Peller points out that segregation and separation are not identical, and that selfchosen separation sometimes can be necessary and valuable. A segregated school system isn't necessarily the same situation that exists in an allwhite neighborhood. A school system in an all-white neighborhood is not a segregated school system. The only time it's segregated is when it is in a connnunity other than white, but at the same time is controlled by whites. So my understanding of

50 Peller, supra note 9.

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a segregated schoolsystem-eem to be. Peter Singer, for one. draws the moral line at s~ntkncc. arguing that anencephalic neonate> arc of lower moral rank than smart nonhuman animals. Singer assigns similar moral standing to humans and any other animals positioned alike in respect to the line established by the capacity for responsiveness. Doubting whether very severely impaired humans have full moral status may appear to run wuntcr to our strong intuition that we have a higher duty to safeguard humans. whatever their deficits may be, than to protect the clevcn:st nonhuman animal;,. But one need nut be obligated to an individual to be obligated in regard to that individual. Human n.;unates lack agency but are linked by history and atlel:lion to adults on whom they are dependent. When an individual's e:>.tcnded dependency imposes an unfairly hea\-y burden of care giving on whichever capable agent is dosest. uur duty to distribute burdens as well as benefits equitably obligates us to prm·ide relief to the unfairly encumbered rare givers. Discharging this duty to care givers is implemented through taking pmitive action toward those for whom they can:. 1-knce. our duty to care for humans incapable of agency exhibits the character of an obligation to per~ons with full moral status, but it is with their care givers rather than themselves

39

that the relevant mutuality has been achieved. Safeguarding humans with disabilities because they are human entails no duties tel extend moral respect or social inclusion to them. Whether individuals who~e execution of major life activities is compromised can command these latter duties (as distinct from being the objects of duty) turns on whether social practice permits them to be perceived as mutually engaged with others in morally important enterprises. Charles TAYLOR sees the development of liberal morality as being an expansion of our views about who can do so and interprets the claim to equal status as having been extended even to "people who through some circumstance that has befallen them are incapable of realizing their potential in the normal way-handicapped people ... for instance." Unfortunately. this way of putting things deconstructs the egalitarian project by intimating that all "handicapped" people are equal only derivatively or fictionally because the) do not function normally. According to data collected in 1994/95 by the United States Department of Commerce for the Sur· vey of Income and Program Participation. more than 50 million Americans reported being so seriously impaired as to be precluded from one or more normal modes of functioning. So centering agenc), or the potential for it, on normal performance of social activities forestalls acknowledging the DIG~IT'Y of a vast!;. greater number of people than just the most profoundly intellectually impaired. For this reason. advocates for individuals with physical. sensory. or cognitive impairments now adopt strategies reminiscent of the previous liberatory movements that advanced women and people of wlor. They dedare that equating competent agency with modes of performance typical of or familiar to the current socially dominant dass is itself disabling. Sec! u/so: ALITO!\O~IY 01' MOR~L AGE>;TS; BEI\EFI· CEI\CE; Bt:!\E\'OLEI\CE; CARE; CHARin·; CIIILDREI'AND I:TIIICAL THEORY; CIVIL RIGHTS AND CIVIC DUTIES; COERCIOI\; COMMLJNITARIANIS:-1; CONTRACTS; DIGNITY; IJISCRIMINATION; FOUALITY; I:UI>·11MO\'h\, -ISM; ELTII,\l"ASIA; FAMILY; FEMINIST ETHICS; GEN· EROSln; GRATITLDE; 11\EOUAI.In'; I'FAI\TICIDE; 1~­ TERESTS; JLSTICE [entries]; 1\EEDS; PATI'R;--;ALISM: PERSO:\AL RELATIONSHIPS; PRIDE; PRIVACY; PLBLIC AI\D PRIV!\lE MORALITY; PUBLIC HEALTH POLICY; PUBLIC POLICY; RACISM AI\D Rf.L.\TED ISSU:S; RAWLS;

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agency and disability

RECIPROCITY;

RESPONSIBILITI';

RIGHT

HOLDERS;

RIGHTS: SELF AND SOCIAL SELF: SELF-OWNERSHIP; SOCIAL AND POLITICAL PHILOSOPHY; SUICIDE; THEORY AND PRACTICE; WELFARE RIGHTS AND SOCIAL POLICY.

Bibliography Baier. Annette. "The Need for More than Justice." In Science. [!,!orality and Feminist Theory. edited by Marsha Hanen and Kai Nielson. Calgary: University of Calgary Pre~s. 1987. Why the concept of justice doesn't do jus· tice to the nuances of moral connectedness. Baynton. Douglas. Forbiddsn Signs: American Culture and the Campaign against Sign Language. Chicago: University of Chicago Press. 1996. Becker, Lawrence C. "The Good of Agency." In Americans with Disabilities: Exploring Implications oft he Law for Indil'iduals and Institutions, edited by Leslie Francis and Anita Silvers. New York: Routledge, 2000. Argues that disability rights are implicit in long-held, fundamental commitments about the value of human life. especially our acknowledgment of the value of human agency. Bcnhabib. Scyla. "In the Shadow of Aristotle and Hegel: Communicative Ethics and Current Controversies in Practical Philosophy." Philosophical Forum 21 (1989): 77-95. Moral agency and its applications in the context of dialogical theory. Francis. Leslie Pickering. and Anita Silvers, eds. Americans with Disabilities: Exploring Implications of the Law for Individuals and {nstitutions. New York: Routledge. 2000. Funk. Robert. ''Disability Rights: From Caste to Class in the Context of Civil Rights." In Images of the Disabled. /Jisahling Images. edited by Alan Gartner and Tom Joe. 7-30. New York: Pracger. 1987. Emergence of social model of disability in United States case law and implications for jurisprudence. especially civil rights. Hull. John. On Sight and Insight: A journey into the World of Blindness. Oxford: One.World Publications. 1997. Quoted from p. 107. Kant. Immanuel. The Metaphysics uf Morals. Part 2. The Doctrine uf Virtue. Translated and edited by Mary Gregor. New York: Cambridge University Press, 1991 [ 1797]. Sec sections 31 and 32. Morris, Jenny. Pride Against Prejudice. Philadelphia: New Society Publishers. 1991. Introduces feminist perspectives to disability studies. Putnam. Ruth Anna. "Why Not a Feminist Theory of Justice?" In Women. Culture and Del'elopment: A Study of Human Capabilities. edited by Martha Nussbaum and Jonathan Glover. Oxford: Clarendon Press. 1995. Pp. 298-331. Quoted from p. 304. Rawls. John. "Justice as Fairness: Political not Metaphys-

ical." Philosophy and Public Affairs 14 ( 19851: 22351. Quotation from pp. 233-34. Silvers. Anita. "Disability Rights."ln The Encyclopedia of Applied Ethics. edited by Ruth Chadwick. San Diego: Acadt:mic Press. 1997. ---."Reconciling Equality to Difference: Caring tFlor Justice for People with Disabilities." lf)'putia !0. no. 1 ( 1995): 30-55. Argues that substituting can: ethics for justice ethics marginalizes people with disabilities; shows how justice ethics should respond to pcopl (last accessed 3 April 2010).

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Challenging Disabling Barriers to Information and Communication Technology in the Information Society as well as barriers connected with its accessibility and usability. This duty will also be discussed below. 2.2

TYPES OF CLAIM

2.2.1. Disability-Related Discrimination The DDA prohibits what is generally known as 'disability-related discrimination?• This occurs where: (a) for a reason which relates to the disabled person's disability, [a person] treats him less favourably than he treats or would treat others to whom that reason does not or would not apply, and (b) he cannot show that the treatment in question is justified. 25 This is a form of discrimination which is prohibited throughout the Act and therefore applies to employers, service-providers, education providers, public authorities and others. Accordingly, these social actors will be obliged to ensure that their employment, goods or services are made available to disabled people on terms at least as favourable as those offered to non-disabled people. It will therefore generally be unlawful to refuse a service to a disabled person, to charge them extra for it, or to offer them a reduced standard of service. The DDA specifically mentions 'access to and use of means of communication' as a form of service to which the Act applies. 26 The scope of this form of discrimination was severely curtailed by the interpretation given to it by the House of Lords in Lewisham Borough Council v Malcolm in July 2008. 27 According to the majority of their Lordships 'less favourable treatment', for the purposes of disability-related discrimination, would be established only if it could be shown that the disabled person was treated less favourably than a non-disabled person would have been treated in exactly the same circumstances - including those resulting directly from the disabled person's impairment. Thus, for instance, a disabled person who had been dismissed for taking time off work as a result of their impairment or condition would need to show that a non-disabled person who had taken the same amount of time off work would not have been dismissed. The Government has accepted that this restrictive approach (reminiscent of the well known Australian education case of Purvis v New South Wales 28 ) is not 24

25

27

The use of this term became widespread after its appearance in the relevant code of practice- Disability Rights Commission, DDA 1995 Code ofPractice: Employment and Occupation, (Stationery Office, 2004), para. 4.28. DDA s. 3A(I), s. 20(1), s. 210(1), s. 21G(I), s. 24(1), s. 2gB(!), s. 28S(l) and s. 34AB(l). DDA, s. 19(3)(b). [2008] UKHL 43. For criticism see A. Lawson, Disability and Equality Law in Britain.· The Role of Reasonable Adjustment, (Hart Publishing, 2008), 130-148. [2003) HCA 62. See further B. Smith, 'From Wardley to Purvis - How far has Australian anti-discrimination law come in 30 years?', 21 Australian Journal of Labour Law (2008), 3.

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consistent with the underlying purpose of the DDA 29 Accordingly, s. 15 of the Equality Act (which is intended to reinstate the approach adopted by the caselaw prior to Lewisham 30 ) explicitly shifts the emphasis away from the question of whether the treatment of a disabled person 'because of something arising in consequence of[ their] disability' was lessfavourable to the question of whether it was unfavourable. This should permit judicial scrutiny to again focus on whether unfavourable treatment of disabled people, because of the consequences of their impairments, is objectively justified.

2.2.2. Reasonable Adjustment Duties 2.2.2.1. Scope In addition to prohibiting the unjustified less favourable treatment of disabled people, the DDA provides that, in certain circumstances, it will be unlawful discrimination to fail to take reasonable steps to remove a disadvantage which would otherwise affect a disabled person. 31 The duty to take such reasonable steps is termed the 'reasonable adjustment' duty although it is generally known in other countries as a 'reasonable accommodation' duty. The nature of this duty varies slightly in different contexts and, because of this, it is convenient to discuss its operation in the employment field separately from its operation in other parts of the Act. 2.2.2.2. Employment Significantly, the reasonable adjustment duty which is placed on employers 32 is entirely reactive in nature. Employers are thus required to take steps only when confronted by a particular disabled applicant or employee who would otherwise be disadvantaged by their provisions, criteria and practices or by the physical features of their working environmentY The level of disadvantage to which a disabled person must be exposed before the duty will be triggered is that of 'substantial disadvantage'. 34 Because the duty to make reasonable adjustments is purely reactive, the focus is on meeting the needs of particular individuals rather than on securing universally accessible systems. In this sense the duty is individual-orientated rather than group-orientated. It is possible, however, that adjustments made for one employee will have the effect of improving accessibility more generally. For instance, in fulfilling a reasonable adjustment obligation in respect of a blind employee, an employer may purchase or design an intranet system which is accessible to all screen-reading software and thus to other potential employees with visual impairments. 29

30

31 32 33 34

136

Office for Disability Issues, Consultation on improving Protection from Disability Discrimination (Office for Disability Issues, 2008) 19. See in particular Clark v Novacold [1999)Industrial Relations Law Reports 318. See generally A. Lawson, Disability and Equality Law in Britain. DDA, s. 4A. DDA, s. 4A(I). Ibid.

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Challenging Disabling Barriers to Information and Communication Technology in the Information Society

The DDA expressly states that 'acquiring or modifying equipment' may, in some circumstances, be a step which an employer could reasonably be expected to take in discharging a reasonable adjustment duty. 35 An example of a case in which the provision of specialist assistive technology and relevant training was held to be a reasonable adjustment (which the employer failed to provide) is Williams v J Walter Thompson Group Ltd 36 There, a blind woman had been appointed as an IT consultant, it being clear from the outset that she would require adapted equipment and appropriate training in its use as well as in the employer's software systems. The equipment did not arrive for several months and proved to be inefficient and inadequate for the job. She was given only one day of training which the Court found to be inadequate. Consequently, for the two-year period she remained with the company, she was unable to perform her job and was either given other, more basic tasks, or told to stay away from work. The UK employment reasonable adjustment duty has been strengthened by the expansive interpretation given to it in the leading case of Archibald v Fife Counci/. 37 In that case, the House of Lords stressed that treating a disabled person in a way which might appear more favourable than the way in which non-disabled people are treated (by waiving the need for a competitive interview, for instance) may well be required by the reasonable adjustment duty if that were the only way in which the relevant disadvantage could be removed. The employment reasonable adjustment duty is limited, however, by its entirely reactive nature. Although this allows (and indeed requires) it to be responsive to the particular needs and circumstances of each disabled individual, it means that employers are under no obligation to take steps to remove disabling barriers in advance of the appearance of a disabled employee or applicant. Thus, to return to the example of an intranet accessible to blind users, 38 a private39 employer who currently employs nobody with severe visual impairments would have no obligation to take accessibility into account when selecting or designing a new intranet system. Such an employer, in other words, would have no legal incentive to avoid creating environments (whether physical, electronic or other) containing major disabling barriers against people with impairments. In the debates leading to the Equality Act, the Government rejected the idea that an anticipatory reasonable adjustment duty should be extended to the employment sphere. It stressed that the employment relationship is generally a long-term one in which it is particularly important that adjustments should be tailored to the specific circumstances of the individual disabled person and was concerned that adding an anticipatory element might reduce the ability of

36

31 38 39

DDA, s 18B(2)(h). Williams v J Walter Thompson Group Ltd [2005] Industrial Relations Law Reports 376. See also Disability Rights Commission, DDA 1995 Code of Practice: Employment and Occupation, (Stationery Office, 2004), para. 5.18. (2004] UKHL 32. See above Section 2.2.2(b). Public sector employers are likely to be subject to the disability equality duty considered below and will therefore be required to have 'due regard' to the need to ensure disability equality and inclusion when making such decisions.

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employers to respond to the needs of disabled employees on an individual basis 40 Disappointingly therefore, the Equality Act contains no provision designed to extend anticipatory reasonable adjustment duties to employment. It does, however, make provision for the introduction of indirect discrimination into the disability context 41 While this concept, like that of anticipatory reasonable adjustment, is group-orientated, it lacks the strong emphasis of reasonable adjustment duties on identifying and implementing solutions and it remains to be seen whether it will be developed in such a way as to give it a clear anticipatory dimension. 2.2.2.3. Goods and Services (Including Education, Transport and Public Functions) In this context, unlike that of employment, the reasonable adjustment duty carries a strong anticipatory element. This obliges duty-bearers to take steps to identify and remove potentially disabling aspects of their operations in advance of the actual appearance of a particular disabled person. They must constantly monitor the accessibility of their services (technological examples of which include virtual kiosks, ATMs, public announcement systems and vending machines) and consider whether disabled people, or people with particular impairment types, might encounter difficulty when attempting to use them. The reasonable adjustment duty in these contexts is therefore group-orientated rather than individual-orientated. This means that it cannot be properly discharged without close reference to principles of universal design which, in the ICT context might well require reference to be made to guidance such as that contained in the Web Content Accessibility Guidelines (WCAG),' 2 the Authoring Tool Accessibility Guidelines (ATAG) 43 and the User Agent Accessibility Guidelines (UAAG).44 In addition however, at least in cases such as education where there is a close ongoing relationship between the disabled person and the duty-bearer, the duty will also require the taking of steps to accommodate the needs of a particular disabled individual of whose circumstances the duty-bearer is aware. In these non-employment contexts, the level of disadvantage required to trigger the duty varies. In education, for instance, it is the same standard of 'substantial disadvantage' as applies in relation to employment. Generally, however, the standard required is that of 'impossibility or unreasonable difficulty' - i.e. that without the adjustment, disabled people as a group and the particular claimant in question would find it impossible or unreasonably difficult to use the relevant service. The high level of disadvantage required to trigger the duties in these

40

41 42

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Government Equalities Office, The Equality Bill: Government Response to the Consultation (Stationery Office, 2008) para. I 1.50. Section 19. World Wide Web Consortium, (version 2.0, 2008) available at (last accessed 30 March 2010). World Wide Web Consortium (2000), available at (last accessed 30 March 2010). World Wide Web Consortium (2002), available at (last accessed 30 March 2010).

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contexts has caused concem. 45 The Equality Act 2010 attempts to tackle this and to create greater uniformity by imposing the trigger of 'substantial disadvantage' to reasonable adjustment duties in all contexts! 6 The anticipatory nature of this duty requires duty-bearers constantly to monitor the difficulties which disabled people are likely to experience when attempting to access their service and the steps that might be taken to tackle them. This is illustrated by the following ICT-rclated example set out in the relevant DDA Code of Practice: A library has a small number of computers for the public to usc. When the computers were originally installed, the library investigated the option of incorporating text-to-speech software for people with a visual impairment. It rejected the option because the software was very expensive and not particularly effective. It would not have been a reasonable step for the library to have to take at that stage. The library proposes to replace the computers. It makes enquiries and establishes that text-to-speech software is now efficient and within the library's budget. The library decides to install the software on the replacement computers. This is likely to be a reasonable step for the library to have to take at this time! 7 2.2.2.4. Reasonable Adjustment and Access to Information

These reasonable adjustment duties clearly have considerable relevance to the subject-matter of this paper. They are a much more powerful tool in the effort to achieve accessible information and ICT than is that of disability-related discrimination - although it is to be hoped that the notion of 'discrimination arising from disability', due to replace disability-related discrimination, will offer greater assistance than its predecessor. Unlike disability-related discrimination, reasonable adjustment duties go beyond prohibiting the Jess favourable treatment associated with the most blatant forms of discrimination and actually require that positive steps be taken to tackle disadvantage arising from access problems. The anticipatory reasonable adjustment duty to be found in the non-employment context is a particularly powerful tool. Interestingly, it appears to have inspired the European Commission to include a similar anticipatory duty in its Draft Goods and Services Directive. 48 Despite the existence of these duties, however, a substantial proportion of information and lCT remains inaccessible to disabled people - a fact which 45

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See e.g. C. Gooding and C. Casserley, 'Open for All: Disability Discrimination Laws in Europe on Goods and Services' in A. Lawson and C. Gooding (eds.), Disability Rights in Europe: From Theory to Practice, (Hart Publishing, 2005), 152; and A. Lawson, Disability and Equality Law in Britain, 99-103. Section 20(3), (4) and (5). Disability Rights Commission, DDA 1995 Code of Practice: Rights of Access Services to the Public, Public Authority Functions, Private Clubs and Premises, (Stationery Office, 2006), para. 6.23. Proposal for a Council Directive on Implementing the Pnnciple of Equal Treatment between Persons irrespective of Religion or Belief, Disability, Age or Sexual Orientation, COM (2008) 426.

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motivated Lord Low to move an amendment to the Equality Bill.49 This would have added a fourth requirement to the three already set out in clause 20 - i.e., requirements to remove a substantial disadvantage created, first, by provisions, criteria or practices; second, by physical features; and, third, by the absence of an auxiliary aid or service. The additional fourth requirement would have concerned the removal of substantial disadvantage created by the provision of information in an inaccessible form. Although the provision of inaccessible information would fall under the first requirement (as it would constitute a 'practice' of the entity in question) and possibly also the third (as it may result from the failure to provide an auxiliary aid or service), Lord Low argued that making it an explicit and freestanding requirement (and thus giving it the same standing as the requirement to remove physical barriers) would raise the profile of this issue and draw attention to its importance. Although the focus of the debates was on inaccessible printed material, the amendment would have had equal application to inaccessible electronic information. Lord Low's amendment, which attracted lively support, was withdrawn after the Government promised to reconsider the issue. 5° In its final version, the Act does not include the proposed fourth requirement. Instead, s. 20(6) provides that: Where the first or third requirement relates to the provision of information, the steps which it is reasonable for A to have to take include steps for ensuring that in the circumstances concerned the information in provided. Although this falls short of giving the same high status to the removal of information barriers as that given to physical barriers, it nevertheless gives the issue explicit recognition on the face ofthe statute and is therefore to be welcomed. 2.2.3. The Disability Equality Duty Since 2005 the DDA has included provisions subjecting all public authorities to a positive duty to promote disability equality- the disability equality duty51 More specifically, public authorities are subjected to a general duty, when carrying out their functions, to have 'due regard' to a range of listed considerations including the need to eliminate unlawful disability-based discrimination and harassment; the need to take steps 'to take account of' 52 their impairment; and the need to promote their equality of opportunity. The functions of a public authority clearly include the delivery of its services and provision of information. The general disability equality duty therefore requires public authorities to factor issues of accessibility and usability into the development and delivery of their services and information processes. This general duty may be enforced through judicial review proceedings brought by any person affected by the work of the authority. In addition, the

49 50 5I

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Amendment 45A- HL Debs, Hansard 13 January 2010, cols. 555-565. See HL Debs, Hansard 13 January 2010, col. 564 per Baroness Thornton. DDA, s 49A inserted by DDA 2005, s 3. See now the new multi-strand equality duty set out ins 149 of the Equality Act 2010. DDA s 49A(d).

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Equality and Human Rights Commission" has the power to assess the level to which a public authority has complied with it; make recommendations as to improvements; and issue a compliance notice if the authority fails to respond adequately to such recommendations. The failure of an authority to respond appropriately to such a notice entitles the Commission to apply to court for an order requiring compliance. 54 Thus, while the general disability equality duty may be enforced by an interested disabled person, a failure to comply with it does not amount to discrimination. Further, while the duty requires authorities to take considerations of disability into account when making relevant decisions, it does not oblige them to reach a particular conclusion. Jt is accordingly an obligation of process rather than substance and, in that respect, differs from the anticipatory reasonable adjustment duty. Nevertheless, it provides disabled people with a powerful mechanism for challenging decisions which are likely to perpetuate or increase their isolation and marginalization. This is clearly illustrated by R (on the application of Lunt and Allied Vehicles Ltd) v Liverpool City Counci/55 in which a disabled person successfully challenged the Council's policy oflicensing one form of wheelchair accessible taxi (in which she found travelling uncomfortable and unsafe) and not another type of accessible taxi (in which travelling with a wheelchair would be safer and more dignified). The general duty to have due regard to disability equality is supplemented by specific duties (created by statutory instrument 56 ) which require public authorities to draw up and publicize 'disability equality schemes'. These schemes, which set out their plans for tackling disadvantage and promoting meaningful inclusion and participation, must be drawn up with the involvement of disabled people. The specific duties, like the general duty, may be enforced by means of compliance notices issued by the Commission. They cannot, however, be enforced by judicial review proceedings. The disability equality duty is confined to the public sector. Nevertheless, it extends to all aspects of the functioning of a public body, including procurement. 57 Procurement policies containing strong equality based criteria, including ones relating to accessibility, have the potential to exert a powerful influence on the private sector. 58 It is clear, however, that this potential has not yet been fully exploited. 53 54 55

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(last accessed 13April 2010). Equality Act 2006, s. 32. [2009) EWHC 2356. See also R (on the application ofChavda and others) v London Borough of Harrow [2007) EWHC 3064 where the decision of a local authority to withdraw care services from disabled people with 'substantial' as opposed to 'critical' needs was successfully challenged; and R (on the application of the EHR(.j v Sec. of State for Justice [2010) EWHC 143 in which the prison authority was successfully challenged for not having 'due regard' to the impact on disabled people of its policies on transferring prisoners to new facilities. See e.g. the Disability Discrimination (Public Authorities) (Statutory Duties) Regulations 2005. Section 155 of the Equality Act will make this explicit in the statute itself. See generally, C. McCrudden, Buying Social Justice: Equality, Government Procurement and Legal Change, (Oxford University Press, 2007). 141

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Anna Lawson According to the 2007 Equalities Review, Government had 'failed to do enough' 59 to inject equality considerations into the private sector through procurement policies. It recommended that the public sector duty should make specific reference to the obligation to incorporate equality considerations into the procurement policies and practices of public authorities. 60 Such provision is made in s. 155 of the Equality Act. While this is undoubtedly a step forward, it still falls well short of the US approach enshrined in the amended s 508 of the Rehabilitation Act which requires all government funded ICT systems to comply with specific accessibility and usability standards. 2.3.

ENFORCEMENT

Discrimination claims under the DDA and, once it has replaced the DDA, the Equality Act 2010 may be brought by individuals who believe themselves to have experienced disability discrimination. Although such litigants may obtain financial and legal support from the Equality and Human Rights Commission (EHRC) 61 or a relevant NGO if their case is of sufficient strategic importance, there is currently no provision for the bringing of collective or representative actions. 62 Enforcement is therefore heavily dependent on the willingness and ability of individual disabled people to take on the demands of what often proves to be stressful, uncomfortable, expensive and time-consuming litigation. These demands are generally heavier in goods and services cases (heard by county and sheriff courts)- and indeed in judicial review proceedings challenging a public authority's compliance with the general disability equality duty (heard by the High Court) - than in employment cases (heard by employment tribunals). It is therefore unsurprising that there have been relatively few reported goods and services DDA cases. 63 Traditionally, the remedies awarded in successful discrimination law suits (which generally include damages) have also focused on compensating the individual litigant rather than on tackling the broader implications of inadequate access and other discriminatory practices. Encouragingly, however, the courts do now appear to be willing to issue injunctions requiring the removal of inaccessible features rather than simply ordering the payment of monetary compensation. In Allen v Royal Bank of Scotland, 64 for the first time in a DDA goods and services case, the remedy awarded included an injunction requiring the defendant to render 59

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Equalities Review, Fairness and Freedom, (Stationery Office, 2007) ch. 4. Ibid ch. 5 step 8. Equality Act 2006, s. 28. Although no such provisions were included in the Equality Act, the Government has not ruled out the possibility of introducing them in the future. See further, Government Equalities Office, The Equality Bill: Government Response to the Consultation, (Stationery Office, 2008) 6.36-6.48. Note also the power of the EHRC to serve unlawful act notices under Equality Act 2006, s. 21. See e.g. N. Meagre et a/, Monitoring the Disability Discrimination Act 1995, (Department for Education and Employment, 1999) 7.5; and S. Leverton, Monitoring the Disability Discrimination Act 1995: Phase 2, Department/or Work and Pensions Jn-House Report 91, (Department for Work and Pensions, 2002), 140-141.

Claim no 7SE51122, approved on appeal at (2009] EWCA Civ 1213.

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its services available and accessible by installing a lift. Steps have also been taken to widen the power of employment tribunals to issue recommendations to employers against whom discrimination claims have succeeded. Instead of being restricted to making recommendations which would directly benefit the particular claimant, s. 124 of the Equality Act will allow a tribunal to recommend that the defendant take specific action to reduce the impact oftheir discriminatory practices on their employees more generally. In contrast with the heavily individual-orientated general approach to enforcement of the DDA, the EHRC has a power to conduct inquiries into any issue related to its duties to promote equality, non-discrimination and human rights- a power which is not dependent on identifying individual victims willing to go to court and which may be used to develop and promote good equality practice in a particular area 65 The Disability Rights Commission (DRC)- before it was absorbed into the EHRC - used the forerunner of this power to carry out a 'formal investigation' into the accessibility and usability of the Web. 66 This is perhaps the most comprehensive UK study of the difficulties encountered by disabled people in this field. It reported that only 32% of the government and official information sector websites examined complied with the most basic web accessibility guidelines (Level 'A' of the WCAG). Although this figure is extremely disappointing, it is more than double the figure for the websites of the other sectors covered - business; e-commerce; entertainment and leisure; Web services, such as search engines, discussion boards, portals and Internet service providers. The DRC also found that compliance with even the most demanding level of the WCAG, level AAA, 'is a necessary but not sufficient condition for ensuring that sites arc practically accessible and usable by disabled people'. 67 According to it, almost half of the problems experienced by disabled people attempting to access the web are not associated with violations of the guidelines. Investigations, such as that carried out by the DRC, have the potential to raise awareness of the types of barrier which web designers and others might unknowingly be creating for disabled people and of the legal liability which might result. It should also be noted here that, despite the relatively small number ofDDA ICT-related cases which have emerged to date, the anticipatory nature of the goods and services reasonable adjustment duty (together perhaps with fear of litigation) has almost certainly raised the profile of access issues and the need to take action in response. According to a recent report of the Social Exclusion Task Force, 68 many UK private sector businesses have recently improved the accessibility of their wcbsites and enjoyed significant increases in business take up as a result. This last point - that improved accessibility can generate new business - is well illustrated by the experiences of Tesco which reported that its

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Equality Act 2006, s 16. Disability Rights Commission, The Web: Access and Inclusion for Disabled People. A Formal Investigation Conducted by the Disability Rights Commission, (Stationery Office, 2004). Ibid, finding 2.2. Social Exclusion Unit, Inclusion through Innovation: Tackling Social Exclusion through New Technologies, (Cabinet Office, 2006), 4.22.

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introduction of an accessible website for online shopping resulted in an estimated increase in business of £30,000,000. 69 3. MARKET REGULATION MECHANISMS

The Communications Act 2003 established 'Ofcom' and charged it with the role of independent regulation of UK broadcasting and telecommunications. The Act imposes various disability-related duties on Ofcom, some of which will now be considered. These appear to relate primarily to the accessibility and availability oflCT. Under s. 10 Ofcom is required to encourage manufacturers to secure: (a) that domestic electronic communications apparatus is developed which is capable of being used with ease, and without modification, by the widest possible range of individuals (including those with disabilities); and (b) that domestic electronic communications apparatus which is capable of being so used is as widely available as possible for acquisition by those wishing to use it. Although this duty is extremely welcome, it is a duty merely to 'encourage' and not to require. It has not proved sufficiently powerful, for instance, to prompt the market to make digital television accessible to people with visual impairments by developing a speech output system for electronic programme guides. Accordingly, there have been calls for the s. 10 duty to be strengthened so as to require manufacturers and service-providers to factor accessibility issues into the design of telecom, broadband and TV services. 70 In addition to Ofcom's duties to promote accessible design, it is obliged to produce (in consultation with service providers and representatives of relevant disabled people) a code relating to the use of television services by people with sensory impairments 71 The code must make provision for the accessibility of programmes and require that, after a 10-year period, at least 80% of a service's non-excluded programmes must be subtitled, at least 5% supported by sign language interpretation and at least 10% audio-described. Section 306 grants the Secretary of State the power, through an Order approved by Parliament, to increase these percentages or to alter the 10-year target period. Compliance with the provisions of this Code is to be assessed as part of Ofcom's regulatory function. The code issued by Ofcom under s. 303 is entitled 'Code on Television Access Scrvices'.72 It includes interim, staggered targets for subtitling, audio-description 69

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< J. Wakefield, Reaching Out to Digital Refuseniks, (BBC, 2005) available at (last accessed 30 March 2010); and Social Exclusion Unit, inclusion through innovation. See e.g. RNIB's response to the consultation paper, Ofcom, Access and inclusion: Digital Inclusion for All, (Ofcom, 2009). Communications Act 2003, s. 303. Ofcom 'Code on Television Access Services' available at (last accessed 30 March 2010).

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and sign language interpretation to be satisfied by service providers in the relevant 10-year period. Jt also makes provision for the publicizing of the availability of such services by service providers. Further, s. 308 of the Communications Act 2003 makes some provision for the use of teletext services by visually impaired people. It allows Ofcom, as part of its regulatory regime, to make provision for the inclusion of features which will enable people with sight difficulties to use teletext.

4. SOCIAL PROTECTION MECHANISMS The focus of this section is the use of State funding to assist disabled people in obtaining ICT equipment (affordability) and training in its use (usability). Attention will first be turned to the ways in which the State provides financial assistance with the costs of purchasing ICT equipment and training needed by disabled people in employment or education. It will then turn to the assistance which is available to disabled people who are neither being employed nor educated. As should be clear from Section 2.2.2 above, the reasonable adjustments duty may well require an employer to provide a disabled employee with ICT equipment which is accessible to them and ensure that they have adequate training in its use. Similar steps may also be required of education providers. For other serviceproviders who have more transient relationships with their customers, however, it is highly unlikely that purchasing equipment and training for an individual disabled person (as opposed to the acquisition of it for the use of disabled customers more generally) would constitute a reasonable adjustment. Disabled people are not required to pay towards the cost of a reasonable adjustment made in their favour under the DDA. Thus, where it would be reasonable for an employer or educator to provide a disabled employee or student with ICT, the cost will clearly not fall on the disabled person themselves. Neither, in very many cases, will it fall entirely on the employer or educator. Various financial schemes exist to provide state funding to assist with the cost of such adjustments. Under the 'Access to Work Scheme' the government contributes to the cost of effecting adjustments to enable a disabled person to enter and remain in employment. This includes the costs of providing or adapting ICT and of training the disabled employee in its usc. The proportion of the cost to be paid from Access to Work funds increases with the cost of the adjustment, with provision for anything over £10,000 to be paid entirely from these public funds. Access to work support is also available for disabled people who are self-employed and for disabled people in connection with job interviews. In the education context, access technology may be purchased for a disabled pupil under the Special Educational Needs framework, funded by local authorities. Schools, however, are not placed under a reasonable adjustments duty to provide equipment. For students in post-16 education, the disabled students allowance provided by local authorities is intended to cover the costs of such equipment, but educational establishments may also be obliged to contribute to it under their reasonable adjustment obligations. The financial support available under these schemes operates to ensure that disabled employees and students obtain a superior level of equipment, more suited to their needs, than they might otherwise have received. This is because the existence of such support is factored into assessments of what adjustments 145

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would be reasonable for employers and education providers to have to make. The purchase of the most appropriate technology for a particular individual may well be regarded as reasonable with the benefit of the financial assistance but as unreasonable if the entire cost were to fall on the employer or education provider. Outside the contexts of employment and education, however, there is little State funded support for the purchase or loan of disability related ICT Such support may be available from a few local authorities but it is on an entirely discretionary basis. Access technology does not fall within the range of equipment to which disabled people may be entitled, free of charge, under the Health Service's 'community equipment' scheme. This represents an insurmountable hurdle in the way of acquiring one's own ICT equipment for many disabled people as the cost of access technology is often prohibitively expensive. 73 For instance, according to the RNlB, in June 2009 a visually impaired person would need to pay on average £3,000 for a computer Braille display, £650 for screen magnification and £600 for text-to-speech software (the updating of which often requires additional substantial costs).74 Further, it may not always be easy for disabled people to use facilities in public libraries or UK online centres even if accessible computers and appropriately trained staff are available - the journey to the nearest such centre may be impossible or impracticable for a disabled person to make unaccompanied. In 2004 the Disability Rights Commission recommended that: In line with its commitment to 'bridge the digital divide', the Government should provide the funding required to enable access to appropriate assistive technology for all those who need it, and to promote its better use.75 The 'Equipped for Living' campaign/ 6 mounted by NGOs working together in the form of the Improving Lives Coalition, also draws attention to the need for this to change. To date, however, while government documents have drawn attention to the need to tackle cost barriers to mainstream JCT which affect the poorer section of the UK population77 (in which, as mentioned above/ 8 a disproportionate number of disabled people are likely to appear), no commitments have yet been made to tackle the additional barriers created by the cost of access technology. Even where disabled people who are not in work or education are able to obtain ICT of their own, or to access it in some sort of resource centre, it may prove extremely difficult or impossible for them to use it without the benefit of specialist training. For assistive technology (such as speech synthesis packages) trainers will need expertise in the operation of the particular types of equipment 73

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A. Sheldon, 'Changing Technology'; and Guide Dogs for the Blind Association, Functionality and the Needs of Blind and Partially Sighted Adults in the UK: A Survey, (GDBA, 2007), Ch. 8. RNJB response to Ofcom, Access and Inclusion consultation. DRC, The Web. Access and Jnclusionfor Disabled People, recommendation 12. Improving Lives Coalition, 'Equipped For Living' (2006). See e.g. Department for Business, Innovation and Skills, Digital Britain. Above n. 10 and accompanying text.

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and software in question. Even where the technology involved is mainstream, people with mental health problems, learning difficulties, hearing impairments and other conditions are likely to benefit only from training tailored to their specific circumstances. Inadequate access to such training constitutes a major barrier to ICT for a great many disabled people.79 There are some encouraging examples of public funds being used to support the training of specific groups of disabled people in the use of !CT. For example, the 'Help Scheme' has been set up to provide practical (and also some limited financial) assistance to disabled people and those aged over 75 with the process of digital switchovcr. Another example is the 'Accessible Technology in Communities' scheme delivered by the RNIB in Wales and funded by the Welsh Assembly. As part of this project, 80 organizations were trained in relevant access technology so as to enable them to provide appropriate training and support to people with visual impairments. In addition, an Access Technology Information Line was established and one-to-one support and mentoring made available from specifically recruited volunteers, 80% of whom were themselves visuallyimpaired.80

5. CONCLUSION Considerable efforts have undoubtedly been made in the UK to promote access to ICT for disabled people through equality law, market regulation and through the provision of public funding through relevant social protection schemes. In his paper in this volume, Rune Halvorsen has indicated that, in placing a heavy emphasis on the first of these three types of strategy, the UK's approach bears more resemblance to that of the US than that of many other European countries. The third type of strategy, however, appears to have been developed more extensively in the UK than in the US, although not to the same degree as in Scandinavian and some other European countries. The UK's approach, as Halvorsen acknowledges, therefore straddles the general division developed in his paper between US and Nordic approaches. UK developments which appear to have considerable potential include the anticipatory reasonable adjustment duty and the public sector duty to promote disability equality. Also worthy of note is the substantial and effective financial assistance granted to employers with the costs of meeting the ICT (and other) disability-related needs of their employees. Nevertheless, serious concerns undoubtedly remain. Despite the potential of the anticipatory reasonable adjustment duty and the public sector equality duty, a disappointing amount of information provided by public bodies remains inaccessible to disabled people. Stronger and less individually-based enforcement 79

80

See e.g., Citizens Online and National Centre for Social Research, Digital Exclusion Profiling of Vulnerable Groups- Adults with Learning Disabilities, (Communities and Local Government Publications, 2008), ch 10.1 and 10.2; and Citizens Online and National Centre for Social Research, Digital Exclusion Profiling of Vulnerable Groups- Adults with Mental Health Problems, (Communities and Local Government Publications, 2008), ch 10.2 and I 0.4. Progressing Digital Inclusion through Community ICT (RNIB, 2008). See, more generally, DCLG, Delivering Digital Inclusion, ch. 3.

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mechanisms, coupled with the heightened profile of access to information that an explicit appearance in the reasonable adjustment duties would give, might increase the chances of this potential being realized. The market is not always keen to respond to the challenge of designing assistive technology or ensuring that equipment used for delivering key services (such as television) will be accessible to disabled people. Consequently, and despite Ofcom's duty to encourage the market to respond to this need, problems of availability of accessible ICT persist. Procurement offers a mechanism through which problems of availability and also accessibility might be reduced. There is uncertainty, however, as to whether current approaches to procurement will be sufficiently strong to ensure that access considerations are effectively injected into the private sector. Usability remains a problem for many disabled people for whom standard training programmes may be inappropriate. Suitably tailored training, particularly at costs affordable to those not in work, docs not always appear to be readily available. Finally, and perhaps most importantly, there remains no form of mandatory state-funded support for disabled people who are not in employment or education, but who wish to buy assistive technology appropriate for their needs. Given the low rates of employment for disabled people, the well-established link between poverty and disability and the expense of assistive technology, this problem of affordability is by no means a small one. It is likely to affect a significant proportion of the people who require such additional or adapted technology in order to access ICT in any meaningful way. Without it, they will necessarily face digital, and increasingly a broader social, exclusion. Despite the seriousness of this problem, it does not yet appear to have even been fully acknowledged by government to be an issue of high priority. In conclusion, despite some extremely positive developments, UK law and policy needs to be further developed and strengthened if it is to ensure that information and communications and supporting technologies will be accessible, available, affordable and usable for disabled people. Some inspiration as to how this might be achieved through equality law and market regulation mechanisms is to be gained from a study of US approaches and debates. Some inspiration as to how it might be achieved through social protection mechanisms is to be gained from a study of European approaches and debates. lt is only through a combination of all these mechanisms and approaches that full inclusion in the information age will be achieved.

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[16] ANTIDJSCRIMINATION AND ACCOMMODATION Christine ]olk INTRODUCTION

The canonical idea of "antidiscrimination" in the United States condemns the differential treatment of otherwise similarly situated individuals on the basis of race, sex, national origin, or other protected characteristics. 1 Starting from this perspective, legal requirements that actors take affirmative steps to "accommodate" the special, distinctive needs of particular groups, such as individuals with disabilities, by providing additional benefits or allowances to them strike many observers as fundamentally distinct from, broader than, and often less legitimate than legal requirements within the canonical "antidiscrimination" category. On this ground, observers sharply contrast Title VII of the Civil Rights Act of 1964 2 and other older civil rights enactments, which are said to be "real anti-discrimination law[s],"3 with the Americans with Disabilities Act of 1990 (ADA) 4 and the Family and Medical Leave Act of 1993 (FMLA), 5 said to be "accommodation" laws. 6 On

• Professor of Law, Harvard Law School. For helpful comments on this work, either in its present form or in prior incarnations, I thank Samuel Bagenstos, Ruth Calker, John Donohue, Richard Fallon, Barbara Fried, Michael Harper, Samuel Issacharoff, Howell Jackson, Louis Kaplow, Daniel Meltzer, Martha Minow, Eric Posner, Richard Posner, Todd Rakoff, Eric Rakowski, Diane Ring, Margo Schlanger, Vicki Schultz, Roger Tufts, Steven Willborn, Stephen Williams, and especially David Charny, Duncan Kennedy, and Cass Sunstein, whose detailed reactions to earlier versions of this work convinced me to reformulate it in the form it now takes. I also acknowledge help from workshop participants at Georgetown University Law Center, Harvard Law School, New York University School of Law, Princeton University, Stanford Law School, the University of California at Berkeley School of Law, the University of Virginia School of Law, and Yale Law School. For extraordinary research assistance, I thank Dan Geyser, Ana Reyes, Gil Seinfeld, and Daniel Volchok. 1 See, e.g., Robert Post, Prejudicial Appearances: The Logic of American Antidiscrimination Law, 88 CAL. L. REV. I, 9-I2 (2000). z 42 U.S.C. §§ 2oooe-2oooe-I 7 (I994 & Supp. I I995). 3 Erickson v. Bd. of Governors of State Colis. and Univs. for Northeastern Ill. Univ., 207 F.3d 945, 95I (7th Cir. 2ooo) (the Age Discrimination in Employment Act of I967 is a "real antidiscrimination law"), cert. denied, I2 IS. Ct. u87 (2001). 4 42 U.S.C. §§ 12,101-12,213 (1994 & Supp. II 1996). 5 29 U.S.C. §§ 2601-2654 (I994 & Supp. III 1997). 6 See sources cited infra note r6.

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these observers' view, "antidiscrimination" focuses on "equal" treatment, while "accommodation" focuses on "special" treatment.' This notion of the relationship between antidiscrimination and accommodation has doctrinal as well as normative and analytic dimensions. At the level of doctrine, the relationship between the two categories plays an important role in determining Congress's power to enact various federal employment laws under Section 5 of the Fourteenth Amendment. Congress must rely on Section 5 if it is authorizing private actors to sue state governments for money damages. 8 Section 5 empowers Congress to "enforce, by appropriate legislation,"9 the substantive provisions of the Fourteenth Amendment, including the antidiscrimination requirement of the Equal Protection Clause. However, if the concept of accommodation is fundamentally distinct from the sort of legislation that validly enforces the antidiscrimination requirement of the Equal Protection Clause, then Congress's power under Section 5 presumably does not extend to accommodation requirements. A striking recent illustration of just this form of reasoning is Judge Frank Easterbrook's opinion in Erickson v. Board of Governors,I 0 holding, as the Supreme Court subsequently did in Board of Trustees of the University of Alabama v. Garrett,l 1 that Title I of the ADA is not within Congress's power under Section s. "[T]he ADA," Judge Easterbrook wrote, "requires employers to consider and to accommodate disabilities, and in the process extends beyond the antidiscrimination principle"; thus the ADA cannot be considered proper '"enforcement' of the Fourteenth Amendment." 12 The court in Sims v. University of Cincinnati 13 relied on the same argument in support of its conclusion that the FMLA's requirement that employees be allowed to take medical leave under specified circumstances is not within Congress's Sections power. 14 The relationship between antidiscrimination and accommodation is of course a very large topic. In one form or another, it has been the subject of an old and expansive debate spanning several decades, dating back at least to the early feminist argument that antidiscrimination

7 See, e.g., Sherwin Rosen, Disability Accommodation and the Labor Market, in DISABILITY AND WORK 18, 21 (Carolyn L. Weaver ed., 1991). s E.g., Kimel v. Fla. Bd. of Regents, 528 U.S. 62, So (2ooo). 9 U.S. CONST. amend. XIV, § s. 10 207 F.3d 945 (7th Cir. 2000), cert. denied, 121 S. Ct. 1187 (2o01). 11 121 S. Ct. 955 (2001). IZ Erickson, 207 F.3d at 949· 13 219 F.3d 559 (6th Cir. 2000). 14 /d. at s6s.

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includes an accommodation component related to pregnancy. 15 My goal here is certainly not to resolve every aspect of that large debate. Instead it is to fill in two important pieces that have been missing from the discussion. The first is that, in a broader respect than has generally been appreciated, some aspects of antidiscrimination law - in particular its disparate impact branch - are in fact requirements of accommodation. In such instances it is hard to resist the conclusion that antidiscrimination and accommodation are overlapping rather than fundamentally distinct categories, despite the frequent claims of commentators to the contrary. 16 The overlap between the two categories, I suggest, also sheds light on the question of Congress's power under Section 5 of the Fourteenth Amendment to enact laws (such as the FMLA) that expressly mandate the provision of particular employment benefits directed toward specific groups of employees. All of these arguments are developed in Part II below. The second missing piece in the debate is that even those aspects of antidiscrimination law that are not in fact accommodation requirements in the sense just described are similar to accommodation requirements in respects that have not previously been understood. The starting point for this argument - and this is a point that has been recognized previously 17 - is the operation of antidiscrimination law when an employer's reluctance to employ members of a particular group stems from dislike of this group by customers or coworkers or from the employer's statistically accurate generalizations about group members. In these situations antidiscrimination law fairly obviously operates to require employers to incur undeniable financial costs associated with employing the disfavored group of employees - and thus in a real sense to "accommodate" these employees. But, as Part III describes, the parallel between antidiscrimination and accommodation in their imposition of such costs on employers is broader and embraces additional aspects of antidiscrimination law as well. This parallel IS See, e.g., Henna Hill Kay, Equality and Difference: The Case of Pregnancy, I BERKELEY WOMEN'S L.J. I, 26-28 (I985); Reva B. Siegel, Note, Employment Equality Under the Pregnancy Discrimination Act of 1978, 94 YALE L.J. 929, 929-30 (1985). 16 See, e.g., Samuel Issacharoff & Justin Nelson, Discrimination with a Difference: Can Employment Discrimination Law Accommodate the Americans with Disabilities Act?, 79 N.C. L. REV. 307, 310-11 & nn.21-22 (zoor); Pamela S. Karlan & George Rutherglen, Disabilities, Discrimination, and Reasonable Accommodation, 46 DUKE L.J. I, 2-4, 9 (I996); Linda Hamilton Krieger, Foreword-Backlash Against the ADA: Interdisciplinary Perspectives and Implications for Social Justice Strategies, 2 r BERKELEY J. EMP. & LAB. L. 1, 3-4 (2ooo); Rosen, supra note 7, at 2 I; Stewart J. Schwab & Steven L. Willborn, Reasonable Accommodation of Workplace Disabilities 1-3, 28-29, 64 (Mar. 2I, 2000) (unpublished manuscript, on file with the Harvard Law School Library). 17 E.g., Samuel R. Bagenstos, Subordination, Stigma, and "Disability", 86 VA. L. REV. 397, 456-57 & n.223 (zooo).

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complements other, non-cost arguments in the existing literature for recognizing the conceptual and analytic commonality of antidiscrimination and accommodation. 18 Part III's analysis, in addition to suggesting that antidiscrimination shares such previously unrecognized similarities to accommodation, is of independent interest in showing how antidiscrimination law may be analyzed using a supply and demand framework drawn from economics. The analysis I offer in this commentary builds upon and extends John Donohue's well-known work in this area. 19 Part IV briefly relates the discussion of antidiscrimination and accommodation offered here to the controversy surrounding affirmative action. Part I introduces the topic by defining "antidiscrimination" and "accommodation" more precisely. I. DEFINITIONS

Throughout this commentary, "antidiscrimination" is used to refer to the constitutional and statutory prohibitions on race, sex, and national origin discrimination contained in the Equal Protection Clause of the Fourteenth Amendment and Title VII of the Civil Rights Act of 1964. Of course, both of these provisions have been subject to judicial interpretation, and so I include in the definition of antidiscrimination the judicial gloss that exists on the two sources of law. It is clear as well that these two provisions are not coterminous; Title VII sweeps more broadly in important respects to be described shortly. Both the Equal Protection Clause and Title VII prohibit discrimination on the basis of traits other than race, sex, and national origin (the traits mentioned just above) as well. Distinctions drawn by states (as opposed to the federal government) on the basis of alienage generally violate the Equal Protection Clause; however, Title VII permits them. 20 By contrast, distinctions based on religion generally violate Title VII/ 1 while under the Constitution they are usually scrutinized not under the Equal Protection Clause but rather under the Free Exercise Clause of the First Amendment.n Because of the differences in 18 See, e.g., Kay, supra note 15, at 26-28; Martha Minow, The Supreme Court, 1986 TermForeword: Justice Engendered, 101 HARV. L. REV. 10, 38-45 (1987); Cass R. Sunstein, Why Markets Don't Stop Discrimination, Soc. PHIL. & POL'Y, Spring 1991, at 22, 34-35 (1991). 19 John J. Donohue III, Is Title Vll Efficient?, 134 U. PA. L. REV. I4II, 1415-JO (1986). 20 See Graham v. Richardson, 403 U.S. 365, 372 (1971) ("[C]lassifications based on alienage, like those based on nationality or race, are inherently suspect and subject to close judicial scrutiny" under the Equal Protection Clause); Espinoza v. Farah Mfg. Co., 414 U.S. 86, 95 (1973) ("(N]othing in [Title VII] makes it illegal to discriminate on the basis of ... alienage."). 21 42 U.S.C. § 2oooe-2(a) (1994). 22 See Goldman v. Weinberger, 475 U.S. 503, 506-ro (1986) (Free Exercise Clause challenge). Of course, such distinctions might also violate the Equal Protection Clause. Ohio Adult Parole Auth. v. Woodard, 523 U.S. 272, 292 (1998) (Stevens, J., concurring in part and dissenting in part).

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the scope of the Equal Protection Clause and Title VII insofar as their application to certain groups is concerned, I limit my discussion here to the traits of race, sex, and national origin, which are central applications of both of these provisions. While both the Equal Protection Clause and Title VII apply to discrimination on the basis of sex, such discrimination is defined more expansively under Title Vll than under the Constitution. Discrimination on the basis of sex includes discrimination on the basis of pregnancy under Title VII, but not under the Equal Protection Clause. 23 Again, my definition of antidiscrimination here embraces everything that is reached by either source of law. To see the broader respect in which Title VII sweeps more expansively than the Equal Protection Clause, it is important to distinguish between two forms of antidiscrimination liability. "Disparate treatment" liability arises when employers are demonstrated to have intentionally disfavored workers with particular traits (race, sex, or national origin as relevant here). 24 This can occur when employers facially single these employees out for worse treatment (for instance, an express statement that "no blacks need apply") and also when employers, while less direct in their actions, nonetheless can be shown to have disfavored employees with particular traits on account of those traits (as, for instance, when an employer rarely or never hires black applicants and is observed to have made inappropriate racial comments). "Disparate impact" liability, by contrast, occurs when employers rely on facially neutral practices that cause disproportionate harm to a particular group of employees and are not justified by job relatedness and business necessity. 25 Behavior in this second category may result from an underlying intent to disfavor a particular group, as discussed more fully in Part II below, but such intent need not be demonstrated in order to establish the employer's liability under the disparate impact branch of antidiscrimination law. Title VII authorizes both forms of antidiscrimination liability, but only disparate treatment discrimination gives rise to heightened scrutiny under the Equal Protection Clause. 26 Because the presence or absence of demonstrated intent is what distinguishes disparate treatment from disparate impact, the question of what constitutes "intent" for this purpose is obviously an important one. Although, as described more fully in section III.C below, some scholars have suggested broad conceptions of intent - under which, for instance, the failure to make buildings accessible to individuals 23 See 42 U.S.C. § 2oooe(k) (1994) (Title VII); Geduldig v. Aiello, 417 U.S. 484, 496-97 & n.2o (1974) (Equal Protection Clause). 24 E.g., Int'l Bhd. of Teamsters v. United States, 431 U.S. 324, 335 n.15 (1977). 25 E.g., id. 26 Washington v. Davis, 426 U.S. 229, 238-48 (1976).

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with disabilities because of a lack of concern over those individuals' particular circumstances may be termed a form of intentional differential treatment - such broad conceptions of intent have not been reflected in antidiscrimination doctrine. As the Supreme Court famously put it in Personnel Administrator v. Feeney, 27 addressing the standard of intent under the Equal Protection Clause, '"Discriminatory purpose' ... implies more than intent as volition or intent as awareness of consequences. It implies that the decisionmaker ... selected or reaffirmed a particular course of action at least in part 'because of,' not merely 'in spite of,' its adverse effects upon an identifiable group." 28 Even if the standard of intent is somewhat different under the disparate treatment branch of Title VII (and it is not clear whether it is 29 ), it is clear that no existing Title VII precedent has found disparate treatment liability for behavior that is the Title VII analogue of neglecting the distinctive building-access circumstances of individuals with disabilities. Beyond the dimension of disparate treatment versus disparate impact liability, Title VII may also be broader - or narrower - than the Equal Protection Clause in certain other respects. For instance, with regard to the standard of liability for disparate treatment discrimination in the context of race, Title VII does not provide a "bona fide occupational qualification" defense (which it does provide for sex and national origin discrimination), 30 yet Judge Richard Posner's opinion in Wittmer v. Peters 31 found such a defense in a race case brought under the Equal Protection Clause. 32 However, such differences in the standard of liability for disparate treatment discrimination are not material to my discussion here. By an "accommodation" requirement for purposes of the analysis below, I mean a legal rule that requires employers to incur special costs in response to the distinctive needs (as measured against existing market structures) of particular, identifiable demographic groups of employees, such as individuals with (observable) disabilities, and imposes this requirement in circumstances in which the employer has no intention of treating the group in question differently on the basis of group membership (or "discriminating against" the group in the canonical sense). A concrete example will be helpful. Consider an employer who is required to provide a reader for a blind employee. Blind 27 442

u.s. 256 (1979).

/d. at 2 79 (citation omitted). 29 For a recent discussion of the Title VII intent standard, see Amy L. Wax, Discrimination As Accident, 74 IND. L.J. II29, II46-52 (1999). 30 42 U.S.C. § 2oooe-2(e) (1994). 31 87 F.Jd 916 (7th Cir. 1996). 32 I d. at 918-2 r. 28

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employees comprise a particular demographic group that is readily identifiable to outsiders. This employer is obviously required to incur special costs in connection with employing the blind employee. These obligations might well arise independently of any intention on the employer's part to treat blind employees differently from others on account of their blindness apart from the resulting need for readers; the employer's refusal to provide a reader without the legal mandate might well have stemmed purely from the cost of providing the reader. If in fact there was no intention to treat blind employees differently on account of their blindness apart from the resulting need for readers, then the requirement to provide a reader is an accommodation requirement within the definition used here. If, instead, the employer intentionally treated blind employees differently on account of their blindness apart from the resulting need for readers - even if its intentional differential treatment was simply a result of customers' or coworkers' attitudes toward blind individuals (for instance) rather than a result of its own views of such individuals - then the requirement is not an accommodation requirement within the definition used here. This definition of an accommodation requirement captures the essence of the dichotomy noted in the Introduction between the canonical idea of "antidiscrimination" (intentional disfavoring of group members on account of their group membership, as in "we don't want any type X employees working here") and the concept of special or extra benefits for a particular group (apart from the requirement that group membership per se be ignored). I discuss the focus of the definition on the presence or absence of such intentional differential treatment by employers further at the beginning of Part III below. Intent in the definition here refers to the notion of intent reflected in existing disparate treatment doctrine, which was described just above. The definition of an accommodation requirement offered here is largely a conceptual one, and in this respect it differs from the definition of antidiscrimination - based as it was on the Equal Protection Clause and Title VII- offered just above. But while the definition of an accommodation requirement is a conceptual one, it may usefully be illustrated by reference to specific employment law statutes. The Family and Medical Leave Act provides a first illustration. The FMLA requires, among other things, that employers permit unpaid leave when an employee has a newborn child, 33 and this requirement may well impose special costs on employers in connection with the employment of female employees of childbearing age, although it will also impose some costs in connection with the employment of prospective fathers. The FMLA also requires that employers permit un33 29 U.S.C. § 2612(a)(r)(A) (1994).

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paid leave for employees with medical conditions that make them unable to perform their job functions, 34 and this requirement may well impose special costs on employers in connection with the employment of female employees of childbearing age (who, if they bear children, will be unable to work for at least a short period of time) and also individuals with disabilities, although again it will also impose some costs in connection with the employment of other individuals as well. If an employer's failure to provide leave in the absence of the FMLA stemmed from an intent on its part to treat female or disabled employees differently on account of their sex or disability status rather than from a genuine concern with the business costs of providing the leave - then the FMLA provisions just described will not be accommodation requirements within the definition offered above. But in those cases in which the failure to provide leave was genuinely in response to the business costs (given existing market structures) of the leave, the requirement to provide leave is an accommodation requirement within the definition used here. A second example of an accommodation requirement follows from the earlier illustration involving a blind employee. A requirement that employers take special steps in response to the distinctive needs (measured against existing market structures) of disabled employees may qualify as an accommodation requirement. The Americans with Disabilities Act requires employers to provide disabled employees, including those who are blind, with "reasonable accommodations" unless such accommodations would pose an "undue hardship" to the employer.35 This aspect of the ADA may require an employer to make physical modifications of a workplace or provide "assistive" technologies to aid in. job performance. 36 The ADA's "reasonable accommodations" provision requires employers to take special steps in response to the distinctive needs (measured against existing market structures) of disabled employees. Thus, the provision will be an accommodation requirement within the definition given here whenever the employer, prior to the legal mandate, refused to modify the workplace or provide helpful technology purely on grounds of the financial cost of doing so rather than based upon an intent to treat disabled employees differently on account of their group membership apart from any resulting need of theirs for "reasonable accommodations." ·As the FMLA example illustrates, an accommodation requirement need not impose costs (relative to existing market structures) exclusively in connection with the employment of a single group to meet the /d. § 26r2(a)(r)(D). 35 42 U.S.C. § I2,II2(a), (b)(S)(A).

34

36 Peter David Blanck, The Economics of the Employment Provisions of the Americans with Disabilities Act: Part I - Workplace Accommodations, 46 DEPAUL L. REV. 877, 892 (1997).

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definition used here; it is enough if the costs for a particular group are disproportionately large. Indeed, even the ADA's mandate of "reasonable accommodations," although nominally applicable only to individuals with disabilities (in contrast to the FMLA's more general, nonclass-specific provisions), may well create costs in connection with the employment of nondisabled employees to the extent that it establishes precedent for practices that ultimately benefit nondisabled employees as well as individuals with disabilitiesY

II. ANTIDISCRIMINATION AS ACCOMMODATION- CASES OF EQUIVALENCE

Turning now to the substance of my argument, this first step examines aspects of antidiscrimination law - in particular its disparate impact branch - that are in fact accommodation requirements. This argument is not normative in any sense; it is simply that there is no way, as a factual matter, to distinguish the specified aspects of antidiscrimination law from requirements of accommodation. The idea that certain aspects of disparate impact liability under antidiscrimination law are in fact accommodation requirements was appreciated by Reva Siegel and also (more briefly) by Linda Krieger and Patricia Cooney long ago in the specific context of pregnancy claims. 38 Krieger has also noted the idea in passing in recent work. 39 But the point about the relationship between antidiscrimination and accommodation extends far more broadly than the pregnancy context, and it requires much greater elaboration and emphasis than it has received in other contexts. As explained below, important aspects of disparate impact liability under Title VII are in fact accommodation requirements. These instances of equivalence between antidiscrimination and accommodation make it hard to argue that the two categories are fundamentally distinct rather than overlapping - yet many commentators have offered just such a view. 40 Moreover, as described below, the overlap between the two categories has important implications for the 37 See, e.g., Lisa Bornstein, Inclusions and Exclusions in Work-Family Policy: The Public Values and Moral Code Embedded in the Family and Medical Leave Act, 10 COLUM. J. GENDER & L. 77, 120 (2ooo) (noting the value of employer rules allowing telecommuting to nondisabled employees with significant family obligations); Robert Ingle, Telecommuting: "Taking Your Work Home with You" Will Never Be the Same Again, 33 MD. B.]., Nov.-Dec. 2ooo, at 3, 6-7 (discussing whether telecommuting is required as a "reasonable accommodation" for individuals with disabilities under the ADA). 38 Siegel, supra note 15, at 94o-46; Linda J. Krieger & PatriciaN. Cooney, The Miller-Wahl Controversy: Equal 'Jreatment, Positive Action and the Meaning of Women's Equality, 13 GOLDEN GATE U. L. REV. 513, 559-60 (1983). 39 Krieger, supra note 16, at 3-4 & n.14. 40 See sources cited supra note 16.

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hotly contested question of the scope of Congress's power under Section 5 of the Fourteenth Amendment to enact the FMLA and other federal employment laws.

A. Disparate Impact Liability as Accommodation This section explains how certain important aspects of disparate impact liability are in fact accommodation requirements. Some background on disparate impact liability is important at the outset. The genesis of this form of liability is the Supreme Court's decision in Griggs v. Duke Power Co., 41 in which the Court held that an employer could not use high school diplomas and general intelligence tests as conditions of employment because such conditions disproportionately harmed black candidates and were not sufficiently related to job performance.42 A leading gloss on the conception of disparate impact liability arising from this case is that disparate impact functions as a means of smoking out subtle or underlying forms of intentional discrimination on the basis of group membership. 43 If disparate impact liability arose only in cases of underlying (though difficult-to-prove) intentional discrimination, then it would not require "preferential treatment" of any sort, as noted by Elizabeth Bartholet. 44 Instead, it could easily be squared with the assumption that members of different groups "are inherently equal in ability and intelligence."45 But disparate impact liability clearly sweeps more broadly, as the discussion to follow will make evident. Employers are often required by disparate impact law to incur special costs in response to the distinctive needs or circumstances (measured against existing market structures) of particular groups, and these requirements may arise in situations in which the employer had no intention of treating the group differently on the basis of group membership. Thus, important aspects of disparate impact law are in fact accommodation requirements. As Siegel has perceptively noted, the gap between a robust conception (such as the one just described) of disparate impact liability and the narrower color (or sex) blindness rationale for the doctrine is reflected in the different accounts offered in Griggs itself. 46 But while 41 401 U.S. 424 (I97I). I d. at 429-33. 43 See, e.g., George Rutherglen, Disparate Impact Under Title VII: An Objective Theory of Discrimination, 73 VA. L. REV. 1297, 1309-II (1987); David A. Strauss, Discriminatory Intent and the Taming of Brown, 56 U. CHI. L. REV. 935, roro--rJ (1989). 44 Elizabeth Bartholet, Application of Title VII to Jobs in High Places, 95 HARV. L. REV. 945, 958-sg (1982). 45 I d. at 958. 46 See Reva B. Siegel, Discrimination in the Eyes of the Law: How "Color Blindness" Discourse Disrupts and Rationalizes Social Stratification, 88 CAL. L. REV. 77, 95-96, IOI-2 (2ooo). 42

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Griggs may be ambivalent on the point, the post-Griggs case law and the Civil Rights Act of rggr leave no doubt, I shall argue, about the existence and force of the broader conception. While some applications of disparate impact liability operate to smoke out underlying intentional discrimination, others impose requirements of accommodation. A natural question to ask at this juncture, of course, concerns the rationale for the broader scope that the courts and Congress (in the Civil Rights Act of rggr) have given the disparate impact branch of Title VII. The natural answer to this question, of course, is that there is no easy, neat way of distinguishing those cases in which disparate impact in fact points to underlying intentional discrimination from those in which it does not. Some cases - such as many of the ones discussed below - may be more likely to fall on one side of the line than the other, but there is no good way to draw a clear line in advance between the two categories. For this reason the doctrine sweeps in both even as it asserts one as its target. r. A First Example: Grooming Rules.- A first example of the way in which aspects of disparate impact liability are in fact accommodation requirements is that employers may be required by disparate impact law to excuse particular groups of workers (defined for instance by race) from facially neutral grooming rules that serve employers' business interests and were adopted solely for that reason. I begin with this example of facially neutral grooming requirements not because of its doctrinal or practical centrality (although it is far from unimportant from a practical perspective), but because the way in which disparate impact liability acts to require accommodation in this case is particularly clear. My discussion here does not address grooming rules that facially distinguish between groups, say by prohibiting long hair for male but not female employees. The leading illustration of facially neutral grooming rules is the nobeard requirement imposed by many employers. Because the skin condition pseudofolliculitis barbae makes shaving impossible for a significant number of black men (and difficult for still more), but has no such effects on white males, some courts have found that a no-beard rule has an unlawful disparate impact on black men. 47 For instance, in Bradley v: Pizzaco of Nebraska, Inc., 48 the Eighth Circuit struck down a no-beard rule imposed by a Domino's pizza franchise on the ground that it had a disproportionately negative effect on black men 47 Bradley v. Pizzaco of Neb., Inc., 7 F.3d 795, 796-99 (8th Cir. 1993); Richardson v. Quik Trip Corp., 591 F. Supp. rrs r, rr53-56 (S.D. Iowa 1984); EEOC v. Trail ways, Inc., 530 F. Supp. 54, 55-59 (D. Colo. 1981). 48 939 F.2d 610 (8th Cir. 1991) [hereinafter Bradley /]; 7 F.3d 795 (8th Cir. 1993) [hereinafter Bradley Il].

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and was not justified by the business necessity requirement of disparate impact law. 49 The court found that the Domino's franchise failed to show business necessity even though it had acted in response to perceived customer concerns about bearded employees. 50 It is clear that a no-beard rule such as this could in some circumstances be used as a subtle means of effectuating underlying intentional discrimination against black employees, as it would screen them out disproportionately and yet is neutral on its face. (Catering to customers' preferences for clean-shaven employees is not a prohibited practice under Title VII, although catering to a preference for white employees obviously would be.) As described above, the way in which such a facially neutral rule could act as a cover for intentional discrimination on the basis of a protected characteristic such as race provides the central ra!:ionale for regulating such facially neutral practices under disparate impact liability. But in many instances the application of disparate impact liability to facially neutral grooming rules is in fact an accommodation requirement, for two reasons. First, an employer such as the Domino's pizza franchise is required to incur special costs in response to the distinctive needs of a particular group of workers (black men in the nobeard example), as it must ignore its genuine business concern about customers' reaction to a particular aspect of its employees' appearance. In the Domino's case itself, although the court found that the employer had not demonstrated a business necessity for its no-beard rule, at trial the Domino's franchise had presented survey evidence that up to twenty percent of the public would "react negatively to a delivery man wearing a beard."51 This evidence suggests that the no-beard rule had genuine support in valid business considerations, and that to abrogate it would impose real financial costs on the employer. The second feature of an accommodation requirement is that the employer lacks any intention to treat a particular group of employees differently on the basis of group membership. The existence of genuine business grounds for a no-beard rule in a case such as Domino's suggests a genuine likelihood that the employer was acting in response to business concerns rather than based upon a subtle intention to exclude blacks from its workforce. Of critical importance to the conclusion here that some cases of disparate impact liability for facially neutral grooming rules are in fact accommodation requirements is, of course, the scope of the business necessity criterion. This is so because if, contrary to the Domino's 49 Bradley l, 939 F.2d at 612-13; Bradley ll, 7 F.Jd at 797-99. so Bradley ll, 7 F.3d at 798-99. 51 ld. at 799·

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case, the existence of any sort of legitimate business ground were sufficient to satisfy the business necessity requirement, then disparate impact would rarely, if ever, extend beyond smoking out subtle forms of intentional discrimination (in circumstances in which no legitimate business ground of any sort could be advanced by the employer) and, thus, would rarely, if ever, require accommodation. Although a general definition of the business necessity criterion is elusive, the litigated cases in the grooming area, as well as those discussed in the sections to follow, make clear that this criterion requires something more than a legitimate business ground of some sort in support of the employer's challenged practice. Both the Domino's case and other cases involving no-beard policies have found disparate impact liability despite the existence of legitimate business grounds for the policies' adoption. 5 2 These cases demonstrate the way in which the business necessity criterion "has teeth." This is not to say, of course, that the business necessity criterion is never satisfied in grooming cases. In one case involving a no-beard rule, for instance, a court affirmed a grant of summary judgment for an employer on the ground that the need to ensure the fit of important safety equipment on the face qualified as a business necessity. 53 But the Domino's example and other similar cases make clear that not all genuine business considerations (such as twenty percent of the public "react[ing] negatively" to bearded delivery personnel54) are enough to support a showing of business necessity. Remedies in the no-beard cases discussed above that have been decided in favor of employees nicely highlight the fundamental equivalence between disparate impact liability and requirements of accommodation. Courts typically have required employers to exempt black men who are unable to shave from rules prohibiting beards. 5 s Thus, quite directly in these cases, disparate impact liability requires employers to incur special costs in response to the distinctive needs (measured against existing market structures) of a particular group of employees. But even if a court were to strike down a no-beard policy in general (the more usual approach in the disparate impact arena outside of the no-beard cases56), the end result would still be that employers would be required, in practical effect, to incur special costs in response 52 E.g., id. at 798-99; Richardson, 591 F. Supp. at IISS· 53 Fitzpatrick v. City of Atlanta, 2 F.Jd III2, ru8-21 (nth Cir. 1993).

Bradley ll, 7 F.3d at 799. See id.; EEOC v. Trailways, 530 F. Supp. 54, 59 (D. Colo. rg8r). In Richardson, the plaintiff sought only monetary relief, 591 F. Supp. at n56, but the court nonetheless chose to state that the employer could enforce the "no-beard policy against all employees except those who provide a medical certificate" showing they could not shave, id. at II 55· 56 See, e.g., Wendy W. Williams, Equality's Riddle: Pregnancy and the Equal Treatment! Special Treatment Debate, 13 N.Y.U. REV. L. & SOC. CHANGE 325, 368 (1984-85). 54 55

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to the distinctive needs (measured against existing market structures) of a particular group. This is so because black men would be disproportionately, though not exclusively, benefited by the legal intervention, akin to the situation in the previously discussed case of the FMLA. As Owen Fiss has noted in discussing disparate impact claims, "a flat ban on use of the criterion will have a differential impact on the two classes. "57 Thus, requirements that employees be exempted from no-beard rules, or even that such rules be abrogated across the board, provide a first example of the way in which certain applications of disparate impact liability are in fact accommodation requirements. 2. A Second Example: Job Selection Criteria. -Disparate impact liability may also impose requirements of accommodation in the most familiar context in which this form of liability operates - that of facially neutral hiring screens or tests that disproportionately disadvantage a particular group. Examples here include height and weight requirements, which tend to exclude women at a higher rate than men,ss and general ability testing, which typically excludes certain racial groups at higher rates than others. 59 Sometimes (perhaps often) these requirements may be used as a means to effectuate intentional differential treatment of a particular group on the basis of group membership. For instance, height and weight requirements may often have been used in the past (or even now) as a cover for intentionally excluding women from certain positions. But even when a hiring criterion was not imposed in an effort to exclude a particular group, and even when the criterion does bear a reasonable relation to job performance, the criterion may nonetheless be unlawful as a matter of disparate impact law. In such circumstances disparate impact liability acts as an accommodation requirement. A prominent recent example of a case involving job selection criteria is Lanning v. Southeastern Pennsylvania Transportation Authority.60 The court there reversed a judgment in favor of an employer and held that an employment screen requiring transit police officers who might have to apprehend suspects on foot to run I .s miles in twelve minutes- a screen that disproportionately disqualified women - might not be justified by business necessity. 61 This was so, the court held, even though the employer had adopted the screen "in response to a perceived need to upgrade the quality of its transit police Owen M. Fiss, A Theory of Fair Employment Laws, 38 U. CHI. L. REV. 235,304 (1971). See, e.g., Dothard v. Rawlinson, 433 U.S. 321, 329-30 (1977). See, e.g., Mark Kelman, Concepts of Discrimination in "General Ability" Job Testing, 104 HARV. L. REV. IIS7, IIS8 (I99I). 60 181 F.3d 478·(3d Cir. 1999), cert. denied, 528 U.S. II3I (2000). 61 I d. at 485, 491-94. 57

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force," 62 and even though studies revealed "a statistically significant correlation between" aerobic capacity (measured by the screen) and "arrests, arrest rates and commendations. "63 Invalidating the employer's selection rule in the Lanning case would require the employer to incur special costs in connection with the employment of female officers, as women would be disproportionately likely to fail the twelve-minute test, a test that obviously bore at least some relation to success in apprehending offenders. Indeed, because of the relevance of the test, the Bush administration recently withdrew from participation on the employees' side of the case. 64 If, as certainly is possible, the employer had adopted the twelve-minute test without any intention of excluding women from the transit police force, then - in light of the costs of abandoning the screen - its invalidation under disparate impact law would impose an accommodation requirement on the employer. A second recent example of the way in which disparate impact liability for job selection criteria may operate to require accommodation is provided by Banks v. City of Albany. 65 There the court refused to · grant summary judgment to a fire department whose policy of subjective hiring based on personal contacts and familial relationships was challenged because of the policy's negative effect on black candidates.66 "Although it may be inferred that familial ties to the Albany Fire Department and a close personal relationship with Chief Larson are an indication of future excellence as a firefighter, Defendants offer no support for the proposition that the Chief's subjective criterion is a business necessity .... "67 Although the case involved a decision that the employer was not entitled to summary judgment rather than a final resolution of the case after a full trial, the foregoing quotation makes clear that the Banks court rejected the employer's business necessity claim not on the ground that it rested on disputed material facts that prevented summary judgment, but instead on the ground that the justification offered by the employer was simply inadequate to establish business necessity. In Banks, it is possible that the department's hiring practices were adopted for other than purely business-related reasons - for instance, to preserve the racial composition of the existing force. But it is also 62 /d. at481. 63 /d. at 484. On remand, the district court found for the employer, as it had the first time around. Lanning v. Southeastern Pa. lransp. Auth., 84 Fair Empl. Prac. Cas. ror2, ro28-32 (2000).

64 Ellen Nakashima, Justice Dept. Bows Out of a Civil Rights Case, WASH. POST, Oct. 2,

2001,

65 66 67

at A23. 953 F. Supp. 28 (N.D.N.Y. 1997). ld. at 33-36. I d. at 36.

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quite possible that the department was genuinely - and correctly acting to maximize the effectiveness and long-term commitment of its workforce. The Banks court notes that a candidate lacking the personal or familial connections sought by the department might nonetheless have "years of experience as a firefighter, perhaps even experience as a fire chief,"68 but still it seems distinctly possible that someone with a personal connection would be preferable from the departmental perspective of maximizing commitment, trust, and stability of the force. And if in fact the department was (correctly) acting on this ground rather than based upon an intent to keep black candidates out, then the effect of a finding of disparate impact liability, and the concomitant invalidation of the department's job selection criteria, would be to impose an accommodation requirement on the employer, much as in the Lanning case. J. A Third Example: English-Only Requirements. - A third case in which aspects of disparate impact liability are in fact accommodation requirements involves the application of disparate impact liability to employers' English-only rules. Some employers forbid their employees to speak languages other than English at the workplace, and these facially neutral rules may create an unlawful disparate impact on the basis of national origin. Last year alone the Equal Employment Opportunity Commission (EEOC) received 443 complaints challenging English-only policies in the workplace. 69 A recent example of a case involving an English-only rule is EEOC v. Synchro-Start Products, Inc. 70 In that case an employer forbade all employees, including those who spoke little or no English, to speak any foreign language at the workplace. 71 The court held that the employer's English-only rule "unarguably impacts people of some national origins· (those from non-English speaking countries) much more heavily than others" and that further proceedings were needed to determine whether the employer's policy met the business necessity requirement of disparate impact law. 72 Synchro-Start subsequently chose to settle the case. 7 3 A recent challenge to an English-only policy in Texas likewise produced a favorable settlement for employees. There the EEOC claim netted a startling $2 ·44 million for a group of eighteen Hispanic em-

68 ld. 69 T. Shawn Taylor, A New Language Barrier: More Businesses Are Requiring English To Be Spoken on the Job, CHI. TRIB., June 10, 2001, § 6 (Working), at 1. 70 29 F. Supp. 2d 911 (N.D. Ill. 1999). 71 Id. at912. 72 I d. at 912-14 & n.7 (applying 29 C.F.R. § 1606.7 (2000) (EEOC English-only rule)). 73 Taylor, supra note 69, at 7.

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ployees who were required to speak exclusively English on the job and who were verbally and physically harassed for violations of this rule. 74 It is clear how an English-only policy - particularly one that, like in the Texas case, applies during break periods as well as while working75 - may be a covert means of effectuating intentional discrimination on the basis of national origin. However, in the case of the Synchro-Start policy noted above, the reason for adopting the rule was apparently a complaint by an employee who believed that her coworkers were using their Spanish language ability to speak ill of her without her being able to understand their comments. 76 As numerous courts and commentators have emphasized, the negative effects on employee morale that such coworker behavior causes may certainly provide a genuine business ground for the adoption of an English-only rule." Nonetheless, this ground may not rise to the level of business necessity because, as described in preceding sections, business necessity requires more than merely a plausible business reason for the challenged practice. If, in a given case, an English-only policy was adopted without any intent to treat an employee group differently on the basis of group membership, and if eliminating the policy would impose costs on the employer in the form of poor coworker morale or other difficulties, then disparate impact liability for an English-only policy is an accommodation requirement. Of course, in some circumstances English-only rules are permissible under disparate impact law, including in cases in which employees have proficiency in English and therefore, according to many (though not all) courts, are not significantly burdened by a requirement that English be the sole language spoken in the workplace. 78 There appear to be no reported cases, however, in which an English-only policy that burdens employees with limited or no English proficiency has been

74 Jd. 75

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ld. 77 E.g., Kania v. Archdiocese of Philadelphia, 14 F. Supp. 2d 730, 736 (E.D. Pa. rgg8); Prado v. L. Luria & Son, Inc., 975 F. Supp. 1349, IJ57 (S.D. Fla. 1997); S. Craig Moore, English-Only Rules in the Workplace, zs LAB. LAW. 295, 296-98 (1999). 78 See Garcia v. Spun Steak Co., 998 F.2d 1480, 1487-88 (gth Cir. 1993); Garcia v. Gloor, 618 F.2d 264, 27o-71 (5th Cir. 198o); Roman v. Cornell Univ., 53 F. Supp. 2d 223, 237 (N.D.N.Y. 1999); Kania, 14 F. Supp. zd at 736; Tran v. Standard Motor Prods., Inc., ro F. Supp. zd rrgg, 12 I I (D. Kan. 1998); Prado, 975 F. Supp. at 1354; Long v. First Union Corp., 894 F. Supp. 933, 941 (E.D. Va. 1995), a.ff'd, 86 F.Jd IISI (4th Cir. 1996); Gonzalez v. Salvation Army, No. 89-1679CIV-T-17, 1991 U.S. Dist. LEXIS 21692, at *4 (M.D. Fla. june 3, 1991). But see EEOC v. Premier Operator Servs., Inc., 113 F. Supp. zd 1066, 1075-76 (N.D. Tex. zooo) (reaching the opposite conclusion about the effect of English-speaking ability on the viability of a disparate impact claim). 76

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upheld on grounds of the employer's business necessity. 79 Again, this suggests the reach and the scope of the business necessity requirement of disparate impact law and, accordingly, the way in which some aspects of disparate impact liability are in fact accommodation requirements. 4· A Fourth Example: Pregnancy.- As Siegel and others have explained, the logic of disparate impact liability requires employers to provide certain benefits, such as leave from work, to pregnant employees. 80 As this conclusion suggests, and as elaborated further below, the pregnancy setting thus provides yet another example of the way in which some applications of disparate impact liability are in fact accommodation requirements.

79 As just noted, many of the reported cases involve situations in which employees have some English proficiency, and in these cases employers often win on the ground that their English-only rules do not significantly burden employees. See Spun Steak Co., 998 F.2d at 1487-88; Gloor, 618 F.2d at 27o-71; Roman, 53 F. Supp. 2d at 237; Kania, 14 F. Supp. 2d at 736; Tran, 10 F. Supp. zd at I2IIi Prado, 975 F. Supp. at 1354; Long, 894 F. Supp. at 941; Gonzalez, 1991 U.S. Dist. LEXIS 21692, at *4. In many of these cases, the court also noted the business grounds supporting the imposition of an English-only rule. Roman, 53 F. Supp. 2d at 237; Kania, 14 F. Supp. zd at 736; Tran, ro F. Supp. 2d at 12to-II; Prado, 975 F. Supp. at IJ57i Long, 894 F. Supp. at 941-42; Gonzalez, 1991 U.S. Dist. LEXIS 21692, at *7. But in none of these instances did the court reach any conclusion as to the business necessity of the rule. (The Kania court is thus incorrect when it states that in Prado the court found the English-only rule at issue to be supported by business necessity. See Kania, 14 F. Supp. 2d at 735· Prado simply found that the rule "further[ed] alegitimate business interest." Prado, 975 F. Supp. at 1357.) The Kania court concluded (in dicta, as it had already ruled against the employees on the ground that their English proficiency refuted any real burden of an English-only rule) that the rule in question had a "valid business justification," Kania, 14 F. Supp. 2d at 736, but the court made no finding of business necessity in support of the rule. Tran is similar to Kania. See Tran, 10 F. Supp. 2d at J2IQ-II. Meanwhile, in Long v. First Union Corp., No. 95-1986, 1996 WL 281954 (4th Cir. May 29, 1996), the Fourth Circuit ruled in favor of the employer on a claim of discriminatory application of an English-only rule, but the appeal did not raise any issue about the general permissibility of the rule itself, see id. at *r & n.2. The employer in Velasquez v. Goldwater Memorial Hospital, 88 F. Supp. 2d 257 (S.D.N.Y. 2000), likewise prevailed, but the case was argued purely on a disparate treatment theory, id. at 261-62, and thus there was no issue of business necessity under disparate impact law. Similarly, no issue of business necessity was raised in Gotfryd v. Book Covers, Inc., No. 97-C7949, 1999 U.S. Dist. LEXIS 235 (E.D. Ill. Jan. 6, 1999); the employer prevailed there because of the small number of incidents involving use of a foreign language that had occurred and the absence of an explicit policy requiring the use of English, id. at *8-24. Finally, as already noted, some courts rule in favor of employees on challenges to English-only rules. See Premier Operator Seroices, IIJ F. Supp. 2d at 1073-76; EEOC v. Synchro-Start Prods., Inc., 29 F. Supp. 2d 911, 912-14 (N.D. Ill. 1999); Saucedo v. Bros. Well Serv., Inc., 464 F. Supp. 919, 922-23 (S.D. Tex. 1979). In two of these three cases (Premier Operator Services and Saucedo), the court explicitly found that the employer's English-only policy was not justified by business necessity. Premier Operator Services, II3 F. Supp. 2d at 107o-71, 1073; Saucedo, 464 F. Supp. at 922. so Deborah A. Calloway, Accommodating Pregnancy in the Workplace, 25 STETSON L. REv. I, 39-40, 42-43 (1995); Krieger & Cooney, supra note 38, at 525 & n.40, 559-60; Laura Schlichtmann, Comment, Accommodation of Pregnancy-Related Disabilities on the Job, 15 BERKELEY J. . EMP. & LAB. L. 335, 37o-88, 403-o4 (1994); Siegel, supra note 15, at 94o-46.

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As just suggested, a central application of disparate impact liability in the pregnancy context involves the provision of leave time from work. Some courts hold that facially neutral employer policies permitting no or limited time off for illness or disability (including pregnancy) create an unlawful disparate impact on female employees. Thus, for example, in EEOC v. Warshawsky & Co., 81 the court granted summary judgment against an employer on the ground that its policy of discharging all first-year employees who requested long-term sick leave had a disproportionately negative effect on women (because of their ability to become pregnant) and was not justified by business necessity.82 Other courts have similarly ruled in favor of employees on disparate impact claims challenging the absence of leave time. 83 The EEOC guidelines likewise provide that the absence or inadequacy of a leave policy may create an unlawful disparate impact on female employees.84 Since the enactment of the Family and Medical Leave Act, the failure to provide an appropriate leave period is independently unlawful; the FMLA requires medical leave for employees with conditions (including pregnancy-related conditions) that prevent them from performing their job functions. 85 Section II.C below discusses the implications of this parallel between the FMLA and disparate impact liability for the current controversy over Congress's power under Section 5 of the Fourteenth Amendment to enact the FMLA's medical leave provision. As suggested by the parallel between disparate impact law and the FMLA- which was one of the laws used in Part I above to illustrate the concept of an accommodation requirement- some aspects of disparate impact liability in the pregnancy context are in fact accommodation requirements. This is so because the provision of medical leave, even unpaid medical leave, entails real financial costs for employers in connection with the employment of women of childbearing age (as well

81 82

768 F. Supp. 647 (N.D. Ill. 1991). I d. at 65 1-5 5. As noted below, the Warshawsky court found the absence of a business necessity despite the fact that it was applying a more employer-friendly framework for business necessity than the one that exists today. See infra note IIJ. 83 E.g., Abraham v. Graphic Arts Int'l Union, 66o F.2d 8u, 818-zo (D.C. Cir. 1981) (reversing a grant of summary judgment for an employer because a pregnant employee had shown that the employer's ten-day leave limitation had a disparate impact on women and the employer had not adequately defended its approach); Miller-Wohl Co. v. Comm 'r of Labor & Indus., 692 P.zd 1243, 1251-52 (Mont. 1984) (concluding, in the course of upholding a state law requiring leave for pregnancy, that an employer's no-leave policy for first-year employees had a disparate impact on women), vacated and remanded, 479 U.S. rose (1987), judgment and opinion reinstated, 744 P.zd 87 r (Mont. 1987). · 84 29 C.F.R. § I604.IO(C) (2000). ss 29 U.S.C. § z612(a)(r)(O) (1994).

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as other employees who use such leave), 86 and thus a legal rule requiring such leave is an accommodation requirement whenever an employer's prior failure to provide the leave reflected these business costs rather than an intent to exclude female employees on account of their sex. Of course, the failure to provide any sort of medical or sick leave might in some cases reflect underlying intentional discrimination against women, who are more likely to need such leave because of their ability to become pregnant. But it is equally clear that this failure could reflect purely the business costs of offering such leave. As noted above, several commentators pointed out the relationship between disparate impact liability and accommodation of pregnancy almost two decades ago. 87 Nonetheless, other commentators have often overlooked the point. These commentators have asserted, without explaining why Title VII's disparate impact branch is not to the contrary, that employers are under no obligation to avoid facially neutral practices that disproportionately harm female employees; instead, according to these commentators, employers must simply avoid singling out pregnancy for worse treatment than other conditions. For instance, it is sometimes contended that (apart from the FMLA) firms need not offer leave for childbirth unless such leave is offered for other health conditions. 88 One author writes, "[A]n employer who promptly discharges an employee who becomes disabled may also fire the disabled pregnant employee."89 Another states that "employers [must] make available to pregnant women only what they make available to men for other conditions."9o These commentators' views are quite puzzling. It is almost as if the very existence of the disparate impact branch of liability under Title VII is being ignored, often based on a reading of the second clause 86 See, e.g., Samuel Issacharoff & Elyse Rosenblum, Women and the Workplace: Accommodating the Demands of Pregnancy, 94 COLUM. L. REV. 2154, 2191-92 (1994). 87 See Krieger & Cooney, supra note 38, at 559-60; Siegel, supra note 15, at 94o-46. 88 E.g., ROBERTA M. SPALTER-ROTH & HEIDI l. HARTMANN, UNNECESSARY LOSSES: COSTS TO AMERICANS OF THE LACK OF FAMILY AND MEDICAL LEAVE 31 41 (1990). 89 Maria 0 'Brien Hylton, "Parental" Leaves and Poor Women: Paying the Price for Time Of{, 52 U. PITT. L. REV. 475, 506 n.138, 512 (1991). 90 Lucinda M. Finley, Transcending Equality Theory: A Way Out of the Maternity and the Workplace Debate, 86 COLUM. L. REV. I uS, I 125 (1986). At various points, Wendy Williams offers similar-sounding statements about the permissibility of facially neutral rules that may disproportionately burden female employees. Williams, supra note 56, at 348, 350 n.ro2, 351. However, her detailed discussion of disparate impact liability in the pregnancy context, see id. at 36465, 372-73, suggests that what she may actually mean by the earlier statements is that, while disparate impact liability may indeed invalidate facially neutral rules, women in such cases are not entitled to any special exemption from such rules; instead these rules must be invalidated across the board. See id. at 368-69. But the idea that across-the-board invalidation means the absence of any special benefit for women overlooks Fiss 's correct observation that even a "flat ban" on a practice that has a disparate impact will produce differential benefits for various groups. Fiss, supra note 57, at 304.

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of the Pregnancy Discrimination Act of 1978 (PDA) 91 that the Supreme Court appears, in California Federal Savings & Loan Ass'n v. Guerra, 92 to have rejected. 93 Indeed, the Reagan Justice Department tried unsuccessfully to argue precisely the claim that disparate impact liability was not available in the pregnancy context, but the Seventh Circuit, in an important decision, Scherr v. Woodland School Community Consolidated District No. 50, 94 promptly rejected this contention. The Scherr court relied heavily on the Supreme Court's decision in Guerra and held that summary judgment had been improperly granted for an employer on a disparate impact claim brought by a pregnant employee. 95 Indeed, even a Title VII minimalist such as Richard Epstein concludes that "it appears that the full apparatus of disparate impact would apply to pregnancy cases under the statute, as it does to ordinary cases of sex discrimination."9 6 To be sure, the pregnancy context differs from the examples discussed in the prior sections in the sense that there is some unrest, and even some 01.1tright conflict, in the case law. While the pregnancy cases discussed above point to the way in which aspects of disparate impact liability are in fact accommodation requirements, other decisions in the pregnancy context (not, however, cited by the commentators who deny any legal obligation to take special steps in response to the circumstances of pregnant employees) offer narrower conceptions of disparate impact liability. The leading example here is Judge Richard Posner's opinion in Troupe v. May Department Stores Co. 97 The employee there had been fired after repeatedly arriving late to work because of morning sick91 42 U.S.C. § 2oooe(k) (1994). 92 479 u.s. 272 (1987). 93 See id. at 284-86. Spalter-Roth and Hartmann, Hylton, and Williams all invoke the second clause of the PDA. SPALTER-ROTH & HARTMANN, supra note 88, at 3; Hylton, supra note 89, at so6 n.138; Williams, supra note 56, at 348. But the Guerra Court, after giving its (seemingly different) interpretation of this clause, cemented the contrast with the view of these authors by stating that "[s]everal commentators have construed the second clause of the PDA in [the way it was describing]." Guerra, 479 U.S. at 285 & n.16. The sources cited by the Court are Siegel, supra note 15, at 937, and Andrew Weissman, Note, Sexual Equality Under the Pregnancy Discrimination Act, 83 COLUM. L. REV. 690, 693 & n.26 (1983). As described above, Siegel's central thesis is that disparate impact liability requires special steps in response to the needs of pregnant employees. Likewise, Weissman's essential argument, although not phrased in terms of disparate impact, is that the law requires various forms of special treatment for pregnant employees. See Weissman, supra, at 693-97, 709-2 I. The reference to Siegel's and Weissman's articles is thus inconsistent with the idea that employers' sole legal obligation is to avoid singling out pregnancy for worse treatment than other conditions. 94 867 F.2d 974 (7th Cir. 1988). 95 Id. at 977-81, 983-84. 96 RICHARD A. EPSTEIN, FORBIDDEN GROUNDS: THE CASE AGAINST EMPLOYMENT DISCRlMINATION LAWS 349 {1992). 97 20 F.3d 734 (7th Cir. 1994).

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ness and just before beginning a scheduled medical leave of absence from which the employer apparently feared she would not return. 98 Judge Posner acknowledged the general availability of disparate impact liability in the pregnancy context but then rejected its applicability to the case at hand on the ground that disparate impact liability cannot serve, he wrote, as "a _warrant for favoritism." 99 Employers, according to Judge Posner, "can treat pregnant women as badly as they treat similarly affected but nonpregnant employees." 100 The treatment of disparate impact liability in Troupe is arguably dicta because "the only kind of discrimination alleged" in the case was disparate treatment,I 01 but subsequent courts have relied on Troupe as the basis for their disparate impact holdings. 1 o2 Dormeyer v. Comerica Bank-lllinois, 103 another Posner opinion, is similar to Troupe. Dormeyer offered a narrow vision of disparate impact liability, a form of liability that, Judge Posner wrote, exists to identify situations in which, "through inertia or insensitivity, companies [are] following policies that gratuitously - needlessly - although not necessarily deliberately, exclude[) black or female workers from equal employment opportunities." 104 Dormeyer, like Troupe and other opinions relying on Troupe, did not offer a response to any of the contrary judicial authority, from either pregnancy or non-pregnancy cases, discussed above. 1os The version of disparate impact liability reflected in Troupe and Dormeyer -·and also in some non-pregnancy cases, such as the Finnegan decision (also authored by Judge Posner) quoted in Dormeyer 106 - cannot be squared with the body of case law discussed up to now. Starting with the Domino's case discussed in section II.A.r above, this case law shows that business necessity requires something more than a minimal business justification or a showing that the policy in question

98

99

ld. at 735-36. /d. at 738.

100 Jd.

I d. at 736. Dormeyer v. Comerica Bank-Ill., 223 F.3d 579, 583 (7th Cir. 2000); Kennedy v. Schoenberg, Fisher & Newman, Ltd., No. 93-C-4518, 1997 WL 285488, at *13 (N.D. Ill. May 19, 1997), ajf'd, 140 F.3d 716 (7th Cir. 1998). Armstrong v. Flowers Hospital, Inc., 33 F.3d IJo8, 1316-r7 (nth Cir. 1994), also relied on Troupe in discussing a pregnant employee's disparate impact claim, but it had already ruled against the employee on that claim because of an evidentiary failure to establish the adverse effect of the challenged policy on pregnant employees. I d. at 1315-16. 103 223 F.3d 579 (7th Cir. 2ooo). 104 Id. at 583 (quoting Finnegan v. Trans World Airlines, Inc., 967 F.2d II6I, u64 (7th Cir. 1992)) (emphasis added). lOS For a criticism of 'Proupe on this ground, see Schlichtmann, supra note 8o, at 408 nn.492, 495· 106 See Dormeyer, 223 F.Jd at 583 (quoting Finnegan, 967 F.2d at u64). 101

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is not, to use the terminology of Finnegan, "gratuitous[]. "107 The Finnegan conception, also reflected in Troupe and Dormeyer, is a significant departure from the case law discussed previously. And, as described just below, this conception seems especially hard to justify after the passage of the Civil Rights Act of 1991. s. The Concept of "Business Necessity" in the Supreme Court and in Congress. - As just described, disparate impact liability may impose requirements of accommodation through its invalidation of facially neutral rules that disproportionately burden particular groups of employees. Also as discussed above, critical to the overlap between disparate impact liability and requirements of accommodation is the scope of the business necessity criterion. This is so because if, contrary to most of the cases discussed above, the business necessity criterion required merely some legitimate business ground for the employer's decision, then disparate impact liability would rarely, if ever, operate to require accommodation; instead, it would function largely or exclusively as a way to smoke out subtle forms of intentional discrimination (in circumstances in which no legitimate business ground could be advanced by the employer). The scope of the business necessity criterion was the subject of an important controversy in the Supreme Court in the late 1980s. Justice O'Connor's plurality opinion in Watson v. Fort Worth Bank & Trusttos offered a deferential formulation of business necessity; employers were merely required to have a "legitimate business purpose[]" for the practice challenged under disparate impact law. 109 The following year, the recently appointed Justice Kennedy joined the four members of the Watson plurality to form a majority in Wards Cove Packing Co. v. Atonio, 110 which held that "the dispositive issue" for purposes of the business necessity criterion was "whether a challenged practice serves, in a significant way, the legitimate employment goals of the employer."111 "A mere insubstantial justification," according to the Court, "will not suffice, because such a low standard of review would permit discrimination to be practiced through the use of spurious, seemingly neutral employment practices. "112 But, the Court concluded, the challenged practice need not be "'essential' or 'indispensable' to the employer's business for it to pass muster." 113

107

Finnegan, 967 F.2d at I 164.

108 487

u.s. 977 (1988).

!d. at 999· llO 490 U.S. 642 (Ig8g), 111 Id. at 659. 112 ld. 113 ld. The Wards Cove standard was the one applied by the court in EEOC v. Warshawsky, 768 F. Supp. 647 (N.D. Ill. 1991), discussed in the preceding section. See id. at 655; supra note 82. 109

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Whether the opinions in Watson and Wards Cove reflected a retreat from earlier Supreme Court formulations of the business necessity criterion is the subject of some dispute. 114 But what is clear is that to the extent Wards Cove (the only opinion that was binding precedent, as Watson was only a plurality opinion) did mark such a retreat, it is no longer good law. In the Civil Rights Act of 1991, Congress specifically employed the phrase "business necessity" to describe what was required for an employer to prevail in a disparate impact case.U 5 The interpretive memorandum accompanying the relevant portion of the Act states that "business necessity" is "intended to reflect the concepts enunciated by the Supreme Court in Griggs v. Duke Power Co., and in the other Supreme Court decisions prior to Wards Cove Packing Co. v. Atonio." 116 Furthermore, the Act provides that this interpretative memorandum is the only source of legislative history that may be "relied upon in any way" in interpreting the business necessity requirement imposed by the Act. 117 Thus, whether or not the majority opinion in Wards Cove altered the business necessity standard (and certainly the interpretive memorandum quoted above suggests Congress's own view of the matter), the rule after 1991 is that the business necessity criterion must be met free of any dilution by Wards Cove. The Lanning and Bradley v. Pizzaco of Nebraska opinions discussed above take the same view. 118 While a majority of the Supreme Court is perhaps inclined toward a somewhat narrower conception of disparate impact liability, Congress has made clear its preference, which, in this area of statutory law, is of course controlling.

B. Implications for the Relationship Between Antidiscrimination and Accommodation Many commentators have suggested that antidiscrimination (defined in terms of existing constitutional and Title VII law, as stated above) and accommodation are fundamentally distinct rather than overlapping notions. 119 But the insights offered here into aspects of disparate impact liability that are in fact accommodation requirements suggest some obvious difficulties with this common view. The present

11 4 Compare Note, The Civil Rights Act of rggr: The Business Necessity Standard, 106 HARV. L. REV. 896, 899 (1993) (suggesting retreat), with Michael Carvin, DispaYate Impact Claims Under the New Title VII, 68 NOTRE DAME L. REV. I 153, II61-62 (1993) (suggesting no retreat). liS 42 U.S.C. § 2oooe-2(k)(1)(A)(i) (1994). 116 137 CoN G. REC. 28,68o (1991) (internal citations omitted). 117 Civil Rights Act of 1991, Pub. L. No. ro2-r66, § 105(b), 105 Stat. ro71, 1075 (1991). 118 Lanning v. Southeastern Pa. Transp. Auth., 181 F.3d 478, 488 & n.r3 (3d Cir. 1999); Bradley II, 7 F. 3d 795, 797 (8th Cir. 1993). 119 See sources cited supra note 16.

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section describes and responds to claims that antidiscrimination and accommodation are sharply different categories. r. Distinguishing Antidiscrimination from Accommodation. - As a first example of the idea that antidiscrimination (as defined under existing constitutional and Title VII law) and accommodation are fundamentally distinct rather than overlapping categories, Pamela Karlan and George Rutherglen argue, in a prominent article on the Americans with Disabilities Act, that this Act's express requirement that employers "mak[e] reasonable accommodations" to the needs of individuals with disabilities sets the ADA "profound[ly]" apart from Title VII. 120 Citing Title VII, Karlan and Rutherglen contend that "under the civil rights statutes that protect women [and] blacks ... plaintiffs can complain of discrimination against them, but they cannot insist upon discrimination in their favor." 121 The authors explicitly contrast this approach with the ADA's express mandate of "reasonable accommodations." 122 But the difficulty with this view is that it fails to recognize the case law, discussed above, imposing accommodation requirements as a matter of Title VII disparate impact law. As described in section II.A above, important aspects of disparate impact liability under Title VII require employers to incur special costs in response to the distinctive needs and circumstances (measured against existing market structures) of particular groups and impose such requirements even in the absence of any intentional differential treatment of such groups by the employer - just as various applications of the ADA's express mandate of "reasonable accommodations" have this pair of features, as noted in Part I above. Even when the remedy for a finding of disparate impact under Title VII is an across-the-board abrogation of the challenged practice instead of merely an exemption for a particular group, the application of disparate impact liability is an accommodation requirement because, as noted above, even "a flat ban on use of the criterion will have a differential impact on the two classes." 123 · The notion that antidiscrimination and accommodation are fundamentally distinct rather than overlapping categories is also a theme voiced by Samuel Issacharoff and Justin Nelson. These authors contend that "the ADA marks a ... departure" from Title VII, even from Title VII's regulation of "facially-neutral criteria" under the disparate impact branch of the law. 124 "(U]nder the ADA," they write, "there is 120 121 122 123 12 4

Karlan & Rutherglen, supra note r6, at 41. I d. at 3 (emphasis added). I d. at 2-4. Fiss, supra note 57, at 304. Issacharoff & Nelson, supra note r6, at 315. To be precise, Issacharoff and Nelson refer to

the use of facially neutral criteria in education rather than in the employment setting regulated by

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an intervening duty to alter the work environment, even if a disabled employee may never be as productive as a non-disabled potential employee."125 But their claimed contrast between Title VII and the ADA's "reasonable accommodations" mandate overlooks the way in which, as described above, Title VII likewise requires employers to "alter the work environment, even if [the] employee may never be as productive as [other] potential employee[s]." When, for instance, disparate impact law prohibits facially neutral grooming rules that maximize an employer's profits, this law is requiring an employer to "alter the work environment" in response to the circumstances of individuals who are less effective employees from the employer's profit-maximizing business perspective. Like Issacharoff and Nelson, Sherwin Rosen, Stewart Schwab and Steven Willborn all draw clear contrasts between Title VII and the ADA's mandate of "reasonable accommodations." 126 Krieger's view is similar: "The ADA," she writes, incorporates "a profoundly different model of equality from that associated with traditional nondiscrimination statutes like Title VII," as the ADA requires that disabled individuals "in certain contexts ... be treated differently, arguably better," than other workers. 127 Again, these perspectives are hard to reconcile with the ways in which disparate impact liability under Title VII imposes accommodation requirements across the range of settings described in section II.A above. The argument here is not that because Title VII's disparate impact branch tracks the "reasonable accommodations" provision of the ADA in requiring certain forms of accommodation, race and other traits covered by Title VII are therefore somehow "the same as" the trait of disability. Obviously there are differences across these contexts; the analogy to disability is certainly, as Mari Matsuda has written in discussing this issue, "inexact." 128 Nonetheless, seeing the relationships between the Title VII categories and disability is important for precisely the reason Matsuda notes: "[D]isability law confronts head-on the fact of difference among human beings and the benefit gained from accommodating those differences." 129 My central point here is that traits covered by Title VII require- and in some cases in fact re-

Title VII. /d. at 315 & n.40. However, nothing in their discussion suggests that they see any distinction for this purpose between the education setting and the employment setting. 125 I d. at 315-16. 126 Rosen, supra note 7, at 21; Schwab & Willborn, supra note 16, at 1-3, 28-29,64. 127 Krieger, supra note 16, at 3-4. 128 Mari ]. Matsuda, Voices of America: Accent, Antidiscrimination Law, and a Jurisprudence for the Last Reconstruction, 100 YALE L.J. 1329, 1381 (1991). 129 Id. at 1381-82.

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accommodation through the operation of disparate impact li-

2. The Domain of Disparate Impact Liability. - Karlan and Rutherglen, for their part, defend the sharp distinction they draw between antidiscrimination and accommodation by reference to the idea that "an underlying assumption of the disparate impact case law [under Title VII] is that it is the selection procedures, rather than the elements of the job itself as currently configured, that have caused the disparate impact." 130 They claim that the ADA's "reasonable accommodations" provision, by contrast, relates to restructuring the "elements of the job itself. " 131 This view, however, is inconsistent with the disparate impact case law under Title VII in contexts such as grooming, English-only rules, and pregnancy (all discussed in section II.A above); a rule requiring no facial hair, specifying the use of the English language, or prohibiting leave for medical conditions is plainly an "element of the job itself' rather than {or at least in addition to) a selection procedure. Disparate impact liability, like the ADA's "reasonable accommodations" provision, challenges the way in which the job is defined or structured in addition to the way in which candidates are selected for positions. It might be urged in response to my argument that the disparate impact cases that have been successful at the Supreme Court level have all involved challenges to selection procedures rather than challenges to the "elements of the job itself." And selection procedures fall comfortably within the ambit of section 703{a){2) of Title VII, which regulates discriminatory deprivation of employment opportunities, while challenges to the "elements of the job itself' fit more naturally under section 7o3(aj(r), which prohibits discrimination in the "terms, conditions, or privileges of employment. "132 As just suggested, the Supreme Court has never had to decide whether disparate impact claims can arise under section 703(a){r). But Congress's statutory codification of disparate impact liability in the Civil Rights Act of rggr strongly supports the conclusion that this form of liability is available under section 703(a)(r) as well as under section 703{a){2). The Act provides that "[a]n unlawful employment practice based on disparate impact is established" under specified conditions, 133 and section 703(a) of Title VII defines the term "unlawful employment practice" as including both discrimination in the "terms, conditions, or privileges of employment" (section 703(a)(1)) and discriminatory deprivation of employment op-

130 131 132 133

Karlan & Rutherglen, supra note 16, at 9 n.34 (second emphasis added). /d. at 9· 42 U.S.C. § 2oooe-2(a)(1), (2) (1994). /d. § 20ooe-2(k)(1XA) (emphasis added).

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portunities (section 703(a)(2)). 134 Furthermore, numerous courts of appeals have held that disparate impact liability is available under section 703(a)(1) as well as section 703(a)(2). 135 Still a further point is that some employment practices simply cannot be exclusively categorized as either selection procedures or "elements of the job itself." This was true, for example, of the no-beard policy in the Domino's case discussed in section II.A. r above; that rule was both a hiring criterion and a condition of the job once obtained. Similarly, one could easily imagine the requirement that officers be able to run I .5 miles in twelve minutes in the Lanning case discussed above being applied periodically to current employees as well as to applicants (although in the actual case union protests led the employer to replace discipline for current employees' failure to meet the requirement with rewards for meeting itl 36). It is hard to see a reason for declaring a no-beard rule or other measure unlawful as a selection procedure but lawful as an "element of the job itself''; indeed, if anything, one would think that the current employee has the greater interest to be protected. Moreover, a limitation focused exclusively on selection procedures would seemingly be of little practical importance because a candidate, once hired, could presumably be fired for failing to meet the requirement. For all of these reasons, the distinction between selection procedures and "elements of the job itself'' seems an untenable mechanism for limiting the scope of disparate impact liability, as well as a restriction that lacks support in existing doctrine. All of this is not to say that altering selection procedures and altering the "elements of the job itself'' are alike in every respect. Economic analysis of changes in job elements, for instance, differs from economic analysis of changes in selection criteria - a point to which I return in detail in section III.B.2 below. J. The Importance of Disparate Impact Liability. - A further response to my claim that antidiscrimination and accommodation are overlapping rather than fundamentally distinct categories is the idea that disparate impact liability, which constitutes the site of the overlap, is only a marginal or unimportant feature of the antidiscrimination category. Krieger makes just this argument, as do Issacharoff and Nelson. 137 A good way to think about this argument is to ask whether it would matter if the disparate impact form of liability were eliminated 134 /d. § •oooe-2(a)(1), (2). 13 5 E.g., Garcia v. Spun Steak Co., 998 F.2d 1480, 1485-86 (9th Cir. 1993); Colby v. J.C. Penney Co., 8n F.2d 1119,1126-27 (7th Cir. 1987). 136 Lanning v. Southeastern Pa. Transp. Auth., 181 F.3d 478, 483 (3d Cir. 1999), cert. denied, 528 U.S. IIJI (2000). 137 Issacharoff & Nelson, supra note 16, at 317 n.49; Krieger, supra note 16, at 3 n.14.

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from Title VII. Such a change would, roughly speaking, do to Title VTI what Washington v. Davis 138 did to the Equal Protection Clause of the Fourteenth Amendment. I think it is clear that it would matter a great deal if Title VII were altered in this way. Certainly Congress thought it would matter, as it quickly responded to a 1989 Supreme Court decision 139 cutting back on (although not even eliminating) disparate impact liability by codifying this form of liability, and its contours, in the Civil Rights Act of rggr. 14o Krieger defends her position by noting that the number of disparate impact claims is small compared to the total number of litigated Title VII claims. 14 i That is certainly correct, as John Donohue and Peter Siegelman have shown. 142 But the simple number of disparate impact claims is not a good measure of their underlying importance - a point that Donohue and Siegelman were careful to note in their work. 143 The number of disparate impact claims is not a reliable predictor of their actual importance for precisely the reasons - noted by Krieger herself- that these claims are limited in number: plaintiffs must identify general employment practices (such as the no-beard rule discussed above) that disproportionately harm a particular group, and they must present statistical evidence of such harm. 144 That sort of case obviously has much broader potential impact than an individual disparate treatment case targeting a specific employment action taken against a particular individual. If a no-beard rule is struck down in a suit against a Domino's franchise, many other employers are likely to consider altering their grooming policies in response, whereas a finding of individual discriminatory behavior by a Domino's franchise would presumably have relatively little effect outside the Domino's franchise. Of course, some of the disparate treatment cases in Donohue and Siegelman's numbers may be systemic disparate treatment (or "pattern or practice") cases rather than individual disparate treatment actions, and these systematic disparate treatment cases may be more like disparate impact actions in the breadth of their effects; but given the small volume of Title VII class actions in Donohue and Siegelman's

138 426 u.s. 229 (1976). IJ9 Wards Cove·Packing Co. v. Atonia, 490 U.S. 642 (rg8g). 140 Pub. L. No. 102-166, § ros(a), 105 Stat. 1071, 1074-75 (1991) (codified at 42 U.S.C. § 20ooe-2(k) (1994)). 14 1 Linda Hamilton Krieger, The Content of Our Categories: A Cognitive Bias Approach to Discrimination and Equal Employment Opportunity, 47 STAN. L. REV. I 161, I 162 n.J (I99S), cited in Krieger, supra note 16, at 3 n.14. 142 John J. Donohue III & Peter Siegelman, The Changing Nature of Employment Discrimination Litigation, 43 STAN. L. REV. 983, 998 (I99I). !43 See id. at 998 n.57. 14 4 Krieger, supra note I4I, at II62 n.J.

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study, 14s the number of systemic disparate treatment cases is likely to be quite small. For all of the foregoing reasons, the argument that disparate impact liability is peripheral or unimportant to antidiscrimination law is unpersuasive. Even if one does not believe that disparate impact is at the absolute core of the antidiscrimination category, it is far from marginal. And although the grooming, English-only, and pregnancy examples discussed above may be special in various respects, the examples involving job selection criteria are absolutely central to disparate impact law. It follows, therefore, that the way in which disparate impact liability imposes accommodation requirements provides an important counterweight- not just a marginal objection - to the idea that antidiscrimination and accommodation are fundamentally distinct rather than overlapping categories.

C. Implications for Section 5 of the Fourteenth Amendment The foregoing discussion has shown that certain applications of disparate impact liability under Title VII are in fact accommodation requirements. This section traces some implications of this argument for Congress's power under Section 5 of the Fourteenth Amendment to enact various federal employment laws. The starting point is the judicial precedent supporting the conclusion that disparate impact liability under Title VII is within Congress's Section 5 power. After describing that precedent, I will argue that legal rules that expressly mandate the provision of particular benefits to employees, but that have the same substantive scope as applications of disparate impact liability, should similarly be held to be within Congress's Section 5 power. I. Judicial Precedent Upholding Disparate Impact Liability Under Title VII as Within Congress's Section 5 Power. - Because some aspects of disparate impact liability under Title VII are in fact accommodation requirements, this form of liability clearly goes beyond the prohibition of subtle or underlying forms of intentional discrimination, although, as described above, an important part of what it does is to catch such instances. How does the scope of disparate impact liability affect Congress's power under Section 5 to impose this form of liability? As noted previously, Section 5 is Congress's only source of power when authorizing private actors to sue state governments for money damages. Section 5 empowers Congress to "enforce, by appropriate legislation,"146 the substantive provisions of the Fourteenth Amendment, including the Equal Protection Clause. The Equal Protection Clause it145

146

Donohue & Siegelman, supra note U.S. CON ST. amend. XIV, § 5.

142,

at

1019-21.

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self does not subject practices that create a disparate impact to any form of heightened scrutiny (although, as noted in Part I above, it does subject various forms of disparate treatment, or demonstrably intentional, discrimination to such scrutiny). 147 However, this limitation of the Equal Protection Clause does not alone take Title VII's disparate impact branch outside of Congress's Section 5 power. The Equal Pay Act, 148 for instance, is generally thought to go (somewhat) beyond what is prohibited by the Equal Protection Clause itself, 149 and yet federal courts of appeals have repeatedly held that the Act is within Congress's Section 5 power. 1so Similarly, in decisions spanning more than two decades, courts of appeals that have considered Congress's Section 5 power to impose disparate impact liability under Title VII have uniformly upheld it as within this power. !51 The Supreme Court, for its part, has recently reaffirmed that "[l]egislation which deters or remedies constitutional violations can fall within the sweep of [Congress's] enforcement power even if in the process it prohibits conduct which is not itself unconstitutional."1S2 "Congress is not limited to mere legislative repetition of this Court's constitutional jurisprudence."153 Legislation that deters or remedies constitutional violations is, in the words of Christopher Eisgruber and Lawrence Sager, "instrumentally useful" in preventing unconstitutional behavior. 154 Acting against a sufficient backdrop of past instances of unconstitutional behavior, Congress may legislate so long as the legislation in question "exhibit[s] 'congruence and proportionality between the injury to be prevented or remedied and the means adopted to that end. "' 155 Applying the current Supreme Court framework, several recent lower federal court decisions have held that dis-

147 148 149

Washington v. Davis, 426 U.S. 229, 239-48 (1976). 29 u.s.c. § 206(d) (1994). See, e.g., Varner v. Ill. State Univ., 226 F.3d 927, 932-33 (7th Cir. 20oo), cert. denied, 121 S. Ct. 2241 (2ooi); Anderson v. State Univ. of N.Y., 107 F. Supp. 2d I 58, 163 (N.D.N.Y. 2000). ISO See Siler-Khodr v. Univ. of Tex. Health Sci. Ctr. San Antonio, 261 F.3d 542, 550 (5th Cir. 200I) (citing cases). 151 Okruhlik v. Univ. of Ark., 255 F.3d 6I5, 624-27 (8th Cir. 200I); In re Employment Discrimination Litig. Against the State of Ala., 198 F.3d 1305, 13I9-24 (nth Cir. I999li Liberles v. County of Cook, 709 F.2d II22, II35 (7th Cir. I983); Scott v. City of Anniston, 597 F.2d 897, 899-900 (5th Cir. 1979). The Seventh Circuit has expressly reserved the question whether Title VII's disparate impact branch is within Congress's power under the Supreme Court's recent Section 5 decisions. Erickson v. Bd. of Governors of State Colis. & Univs. for Northeastern Ill. Univ., 207 F.3d 945, 952 (7th Cir. 2ooo), cert. denied, I2I S. Ct. n87 (2001). 152 City of Boerne v. Flores, 521 U.S. 507,518 (I997) (emphasis added). !53 Bd. of Trs. of the Univ. of Ala. v. Garrett, I 2 I S. Ct. 955, 963 (200I). 154 Christopher L. Eisgruber & Lawrence G. Sager, Congressional Power and Religious Liberty After City of Boerne v. Flores, 1997 SUP. CT. REV. 79 1 87-88. ISS Garrett, I2I S. Ct. at 963, 964-66 (quoting City of Boerne, 52 I U.S. at 520).

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parate impact liability under Title VII is within Congress's Section 5 power.ts6 A prominent 1999 decision by the Eleventh Circuit in a race discrimination case, for instance, held that disparate impact liability was within the Section 5 power because "[a]lthough the plaintiff is never explicitly required to demonstrate discriminatory motive" in a disparate impact case under Title VII, a "finding of disparate impact can be highly probative of the employer's motive since a racial 'imbalance is often a telltale sign of purposeful discrimination,"' which in turn is subject to searching judicial review under the Equal Protection Clause. 157 Thus, according to the Eleventh Circuit, a showing of forbidden disparate impact is related to the underlying constitutional violation of prohibited intentional discrimination even though Title VII's disparate impact branch undoubtedly sweeps more broadly in its coverage.158 This linkage between disparate impact liability and the underlying constitutional violation - viewed against the backdrop of "the troubling persistence of race discrimination in public employment," according to reports cited by the Congress enacting the relevant legislation - sufficed, according to the Eleventh Circuit, to sustain disparate impact liability as within Congress's Section 5 power. 159 As the court emphasized, its reasoning was not to be read to say that in a disparate impact suit a "plaintiff must prove discriminatory intent ... ; it is clear that what plaintiffs must demonstrate is a discriminatory result, coupled with a finding that the employer has no explanation as to why the challenged practice should be sustained as a job related business necessity. "160 The Supreme Court itself has not yet addressed Congress's power under Section 5 to enact the disparate impact branch of Title VII. (Somewhat relatedly, the Court last Term in Alexander v. Sandoval 161 found it unnecessary to decide whether a disparate impact regulation was authorized by a congressional statute prohibiting intentional discrimination.162) Would the Supreme Court come out the same way as the lower court precedent on the question of Congress's Section 5 power to enact the disparate impact branch of Title VII? I do not attempt to provide a comprehensive answer to this question because my !56 Okruhlik, 255 F.3d at 624-27; In reEmployment Discrimination Litig., 198 F.3d at 1319-24; Reynolds v. Ala. Dep't of Transp., 4 F. Supp. 2d 1092, 1098-1n2 (M.D. Ala. 1998). 157 In reEmployment Discrimination Litig., 198 F.3d at 1319-21 (quoting International Brotherhood of Teamsters v. United States, 431 U.S. 324, 339-40 n.2o (1977)). 158 Id. at 1321-22. I 59 I d. at 1321-24. 160 Id. at 1322 (emphasis added). 161 121 s. Ct. 15II (2001}. !62 I d. at ISIS, 1516. The statute in question was§ 601 of Title VI of the Civil Rights Act of 1964, 42 u.s.c. § 2000d (1994).

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central point here is instead the relationship between Congress's Section 5 power to impose disparate impact liability under Title VII and its power to impose legal rules that expressly mandate the provision of particular benefits to employees; however, a few points are worth noting briefly here alongside the substantial commentary that already exists on the question of Congress's Section 5 power to impose disparate impact liability under Title VII. 1 63 First, as described above, some members of the Supreme Court showed an inclination, prior to the Civil Rights Act of 1991, toward a narrow conception of disparate impact liability, stemming from a deferential standard of business necessity. 164 Such an approach would certainly make disparate impact liability easier to uphold as within Congress's power under Section 5, but it would also mean that disparate impact liability was less apt to impose requirements of accommodation. However, the Civil Rights Act of 1991 makes clear that the business necessity standard is more substantial, as described above. 165 The Court's possible distaste for this broader view might suggest that it would be reluctant to find it within Congress's power under Section 5, for, if the Court is stuck with Congress's conception of disparate impact liability as a general matter, at least it can still be the final arbiter of whether this conception may be applied in suits against state governments for money damages. A second and countervailing point, though, is that the robust conception of disparate impact liability embraced by Congress in the Civil Rights Act of 1991 plays an important role in ferreting out subtle forms of intentional discrimination and, therefore, is connected to the prevention and remediation of violations of the underlying substantive constitutional prohibition on intentional discrimination. A robust conception of disparate impact liability plays such an important role in ferreting out subtle instances of intentional discrimination because, as described in section II.A above, there is simply no easy, neat way of separating out subtle instances of intentional discrimination from other behavior, and therefore a robust conception of disparate impact liability is needed to police underlying intentional discrimination effectively. To be sure, a narrow conception of disparate impact liability, achieved through a deferential standard of business necessity, would guarantee that few or no findings of liability would be made in the absence of intentional discrimination, but it would do so only at the cost of leaving 163 See, e.g., Eisgruber & Sager, supra note 154, at 9cr