Disability, Health, Law, and Bioethics [1 ed.] 1108485979, 9781108485975

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Cambridge University Press 978-1-108-48597-5 — Disability, Health, Law, and Bioethics Edited by I. Glenn Cohen , Carmel Shachar , Anita Silvers , Michael Ashley Stein Frontmatter More Information

disability, health, law, and bioethics Historically and across societies, people with disabilities have been stigmatized and excluded from social opportunities on a variety of culturally specific grounds. In this collection, the authors explore the impact that the philosophical framing of disability can have on public policy questions, in the clinic, in the courtroom, and elsewhere. They examine the implications of this understanding for legal and policy approaches to disability, strategies for allocating and accessing health care, the implementation of the Americans with Disabilities Act, health care rights, and other legal tools designed to address discrimination. This volume should be read by anyone seeking a balanced view of disability and understanding the connection between the framing of disability and policies that have a real world impact on individuals. I. Glenn Cohen is the James A. Attwood and Leslie Williams Professor of Law at Harvard Law School and Faculty Director of the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics. He is one of the world’s leading experts on the intersection of bioethics and the law, as well as health law. Glenn has written over 100 articles and book chapters in venues such as the New England Journal of Medicine, JAMA, Nature, and The Harvard Law Review. Cohen is also the author, editor, or coeditor of twelve books. Carmel Shachar is Executive Director of the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. Carmel’s scholarship focuses on law and health policy, with a focus on the regulation of value-based health care, the impact of the opioid epidemic, and anti-discrimination law and policy. She is also Lecturer on Law at Harvard Law School, where she coteaches a course on health care rights in the twenty-first century. Anita Silvers, Professor of Philosophy and Health Equity Institute Affiliate, taught at San Francisco State University for over fifty years. During that time, she was a leader in the fight against barriers keeping students with disabilities out of California’s higher education system. Along with publishing more than 150 book chapters and articles, Anita was appointed to the National Endowment for the Humanities National Council and made significant contributions to the field of philosophy and disability. She passed away in 2019 and is sorely missed. Michael Ashley Stein is Executive Director of the Harvard Law School Project on Disability, and Visiting Professor at Harvard Law School since 2005. One of the world’s leading experts on disability law and policy, he participated in the drafting of the UN Convention on the Rights of Persons with Disabilities. Michael works globally with disabled peoples’ organizations, consults with governments, advises UN bodies and national human rights institutions, and has brought landmark disability rights litigation. His pathbreaking scholarship has been published by leading journals and academic presses.

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Disability, Health, Law, and Bioethics Edited by

I. GLENN COHEN Harvard Law School

CARMEL SHACHAR Harvard Law School

ANITA SILVERS San Francisco State University

MICHAEL ASHLEY STEIN Harvard Law School

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Cambridge University Press 978-1-108-48597-5 — Disability, Health, Law, and Bioethics Edited by I. Glenn Cohen , Carmel Shachar , Anita Silvers , Michael Ashley Stein Frontmatter More Information

University Printing House, Cambridge C B 2 8bs, United Kingdom One Liberty Plaza, 20th Floor, New York, N Y 10006, USA 477 Williamstown Road, Port Melbourne, V I C 3207, Australia 314–321, 3rd Floor, Plot 3, Splendor Forum, Jasola District Centre, New Delhi – 110025, India 79 Anson Road, #06–04/06, Singapore 079906 Cambridge University Press is part of the University of Cambridge. It furthers the University’s mission by disseminating knowledge in the pursuit of education, learning, and research at the highest international levels of excellence. www.cambridge.org Information on this title: www.cambridge.org/9781108485975 D O I : 10.1017/9781108622851 © Cambridge University Press 2020 This publication is in copyright. Subject to statutory exception and to the provisions of relevant collective licensing agreements, no reproduction of any part may take place without the written permission of Cambridge University Press. First published 2020 A catalogue record for this publication is available from the British Library. Library of Congress Cataloging-in-Publication Data N A M E S : Cohen, I. Glenn, editor. | Shachar, Carmel, 1985– editor. | Silvers, Anita, editor. | Stein, Michael Ashley, editor. T I T L E : Disability, health, law, & bioethics / edited by I. Glenn Cohen, Carmel Shachar, Anita Silvers, Michael Ashley Stein. O T H ER TI T L E S : Disability, health, law, and bioethics D E S C R I P TI O N : Cambridge ; New York, NY : Cambridge University Press, 2020. | Includes bibliographical references. I D E NT I F I E R S : L C C N 2019039765 (print) | L C C N 2019039766 (ebook) | isbn 9781108485975 (hardback) | I S B N 9781108725408 (paperback) | I S B N 9781108622851 (ebook) S U B J E C T S : M E S H : Disabled Persons – psychology | Bioethical Issues | Disabled Persons – legislation & jurisprudence | Health Services for Persons with Disabilities | Social Stigma C L A S S I F I C A T I O N : L C C H V 1568 (print) | L C C HV 1568 (ebook) | NL M H V 1568 | D D C 362.4–dc23 LC record available at https://lccn.loc.gov/2019039765 LC ebook record available at https://lccn.loc.gov/2019039766 ISBN ISBN

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Dedication

Anita Silvers, one of the coeditors of this volume, died on March 14, 2019. This brief memorial is written by three of her friends and collaborators, Teresa Blankmeyer Burke, Leslie Francis, and Mary Varney Rorty. Anita Silvers shaped the fields of philosophy and disability substantively, institutionally, and ethically. Her own life was shaped by a severe case of polio, which she contracted as a nine-year-old at scout camp. She received her B.A. in philosophy from Sarah Lawrence College in 1962, her Ph.D. from Johns Hopkins University in 1967, and studied at London University in 1965. When she finished her Ph.D., Silvers was advised by her mentors that, because of her visible disabilities, it would be prudent to apply for positions in philosophy where in-person interviews were not standard. So, she accepted an offer to join the faculty at San Francisco State University, where she built a highly distinguished career as professor for over fifty years and department chair for several terms. She did this even though, for many years, she had to arrive at her office very early in the morning to keep students and colleagues from seeing the effort it took her to reach her inaccessible office and classrooms on the upper floor of a building without an elevator. Among her many books and articles were seminal works in aesthetics, bioethics, justice, and philosophy and disability. Silvers’ early philosophical writing was in aesthetics. At the time, the field was locked into the analytic tradition, attending to questions such as whether there are necessary or sufficient conditions for an object to count as a work of art. Silvers demonstrated, to the contrary, that this analytic program failed crucially to engage with the world of art as actually practiced. She coauthored Puzzles About Art,1 a volume that gave generations of students the materials with which to challenge fundamental assumptions about art and its making. Silvers also deployed her world-centered approach to aesthetics to literature and critical thinking more generally, writing about the role of art in education and philosophy in schools. 1

Margaret P. Battin et al., Puzzles About Art: An Aesthetics Casebook (1989).

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Dedication

From her pathbreaking work in aesthetics and throughout her career, Silvers was recognized for the breadth of her contributions to the humanities. In 1978, she was named California Distinguished Humanist by the California Council for the Humanities. In 1980, President Jimmy Carter appointed her to the National Council for the Humanities, the governing board of the National Endowment for the Humanities. Silvers received the inaugural California Faculty Association Human Rights Award in 1989. In 2009, she became the only recipient from a nonresearch-intensive university to be awarded the Quinn Prize for Contributions to Philosophy by the American Philosophical Association (APA). She was the 2013 winner (with Eva Kittay) of the Lebowitz Prize for Philosophical Achievement and Contribution by Phi Beta Kappa and the APA. Silvers also received the Wang Family Excellence Award for extraordinary achievements in the California State University system in 2017. By the early 1990s, Silvers turned her acute philosophical eye to bioethics and disability. Drawing on her insights about art, she criticized the role played by judgments about “the normal” in assessments of the capacities of persons as agents, or judgments about the effective deployment of healthcare. In Disability, Difference, Discrimination: Perspectives on Justice in Bioethics and Public Policy,2 Silvers and her coauthors argued that equality for people with disabilities, like equality for others, means seeing them as competent contributors to cooperative social practices rather than as persons in need of welfare. This understanding of equality, Silvers contended, provides the theoretical foundation for disability rights as civil rights. Such civil rights are not special privileges; they are accommodations for difference that enable persons with disabilities to work, engage socially, or function successfully in multiple aspects of life, just as others with different bodies or minds are able to do. Such accommodations must open doors in ways that provide meaningful access for people to function, rather than becoming mere empty promises. With Leslie Francis, Silvers edited a volume celebrating the first ten years of the civil rights accomplishments of the Americans with Disabilities Act3 and authored many articles on disability civil rights in healthcare, reproduction, employment, and public accommodations. Silvers also edited field-defining volumes on justice in healthcare such as Medicine and Social Justice: Essays on the Distribution of Health Care,4 The Blackwell Guide to Medical Ethics,5 and Medicine and Social Justice: Essays on the Distribution of Health Care.6 2

3

4

5 6

Anita Silvers et al., Disability, Difference, Discrimination: Perspectives on Justice in Bioethics and Public Policy (1999). Leslie Francis & Anita Silvers (eds.), Americans with Disabilities: Exploring Implications of the Law for Individuals and Institutions (2000). Rosemond Rhodes et al. (eds.), Medicine and Social Justice: Essays on the Distribution of Health Care (2002). Rosemond Rhodes et al. (eds.), The Blackwell Guide to Medical Ethics (2007). Rhodes et al. (eds.), Medicine and Social Justice.

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Dedication

In her extensive bioethics scholarship, Silvers was especially concerned to address disability discrimination in healthcare. Drawing on her own experiences as a partial quadriplegic, she sought tirelessly to point out how thinking about disability goes wrong in healthcare by locating problems in bodily differences rather than features of the world, such as the design of warning systems that fail to communicate successfully with people with sensory disabilities. She argued for critical distinctions between disability discrimination and the imposition of misplaced paternalistic judgments or values held by others, such as the determination that life should be preserved at all costs. To illustrate, in her recent testimony before the National Academy of Medicine in their workshop on physician-assisted death, she powerfully argued against the requirement that persons seeking physician-assisted death must administer the doses to themselves. Such misplaced protectionism, she contended, deprioritized the choices those people made and risked subjecting them to greater harm. She sought to implement these insights in her long years of service on the ethics committee at San Francisco General Hospital, in the many classes on bioethics that she taught at San Francisco State, and in all of the mentoring she did for others. Silvers’s work on disability justice was grounded in her experience as a disabled person and her activism on behalf of people with disabilities. The conclusion from her essay “Formal Justice” says it best: Listening to the voices of people with disabilities in their own words quoted throughout this essay, we cannot help but have observed that, foremost, they desire a public sphere that embraces their presence. For them, equality means taking their places as competent contributors to well-ordered cooperative social and cultural transactions. For them, justice must offer, first, the visibility of full participatory citizenship, not a spotlight that targets them as needing more than others do.7

From her time as a graduate student at Johns Hopkins to her explosive laughter that could be heard down the halls of so many meetings, Anita Silvers buoyed us all. She was mentor, colleague, advocate, contributor, teacher, roommate, and friend. She will be greatly missed.

7

Silvers et al., Disability, Difference, Discrimination, 145.

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Contents

page xii

Notes on Contributors

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Introduction Carmel Shachar, I. Glenn Cohen, and Michael Ashley Stein Preface Tom Shakespeare

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Acknowledgments

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part i

disability: definitions and theories

1

Introduction I. Glenn Cohen

3

1

Disability, Health, and Normal Function Elizabeth Barnes

5

2

Healthcare As Eugenics Ani B. Satz

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3

Epistemic Injustice, Disability Stigma, and Public Health Law Daniel Goldberg

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part ii

47

4

disability in the beginning and the end of life

Introduction I. Glenn Cohen

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Abortion, the Disabilities of Pregnancy, and the Dignity of Risk Mary Anne Case

51

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Contents

The Down Syndrome Information Act and “Mere Difference”: Redefining the Scope of Prenatal Testing Conversations? Marie-Eve Lemoine and Vardit Ravitsky

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Dementia, Disability, and Advance Medical Directives: Defensible Standards for Dementia Care Rebecca Dresser

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part iii

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disability in the clinical setting

Introduction Carmel Shachar

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Expressing Respect for People with Disabilities in Medical Practice Adam Cureton

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8

Disabled Bodies and Good Organs Emily A. Largent

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9

Humanizing Clinical Care for Patients with Disabilities Omar Sultan Haque and Michael Ashley Stein

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10

Chronic Pain As a Challenge for Disability Theory and Policy Caroline J. Huang and David Wasserman

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part iv

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equality, expertise, and access

Introduction Michael Ashley Stein 11

143

Making “Meaningful Access” Meaningful: Equitable Healthcare for Divisive Times Leslie Francis and Anita Silvers

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The Privacy Problem in Disability Antidiscrimination Law Jasmine E. Harris

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Sexual Agency As a Rights-Based Imperative for Persons with Intellectual Disabilities Matthew S. Smith, Tara Allison, and Michael Ashley Stein

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part v

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disability, intersectionality, and social movements

Introduction Carmel Shachar

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Contents

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Destigmatizing Disability in the Law of Immigration Admissions Medha D. Makhlouf

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The Normative Bases of Medical Civil Rights Craig Konnoth

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Judicial Representation: Speaking for Others from the Bench Wendy Salkin

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part vi

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quantifying disability

Introduction William P. Alford 17

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Can We Universally Accommodate Mental Health and Should We? A Systematic Review of the Evidence and Ethical Analysis Nathaniel Z. Counts, C. Taylor Poor, Julie Erickson, Thomas Hart, and Kelly A. Davis

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Algorithmic Disability Discrimination Mason Marks

19

The Pathways Approach to Priority Setting: Considering Quality of Life While Being Fair to Individuals with Disabilities Govind Persad

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Measuring Health-State Utility via Cured Patients Nir Eyal

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Notes on Contributors

William P. Alford, J.D., M.A. Jerome A. and Joan L. Cohen Professor of Law, Harvard Law School Tara Allison, J.D. Elizabeth Barnes, Ph.D. Professor of Philosophy, University of Virginia Teresa Blankmeyer Burke, Ph.D. Associate Professor of Philosophy, Gallaudet University Mary Anne Case, J.D. Arnold I. Shure Professor of Law, University of Chicago Law School I. Glen Cohen, J.D. James A. Attwood and Leslie Williams Professor of Law and Faculty Director of the Petrie-Flom Center, Harvard Law School Nathaniel Counts, J.D. Associate Vice President of Policy, Mental Health America Adam Cureton, Ph.D. Associate Professor of Philosophy, University of Tennessee Kelly A. Davis Director of Peer Advocacy, Supports, and Services, Mental Health America Rebecca Dresser, J.D. Daniel Noyes Kirby Professor of Law Emerita, Washington University in St. Louis School of Law Julie Erickson, M.A. Senior Program Manager for National Education Programs, National Alliance on Mental Health Nir Eyal, D.Phil. Henry Rutgers Professor of Bioethics and Director of the Rutgers University Center for Population-Level Bioethics Leslie Francis, J.D., Ph.D. Distinguished Alfred C. Emery Professor of Law, Distinguished Professor of Philosophy, and Director of the Center for Law & Biomedical Sciences, University of Utah xii

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Notes on Contributors

Daniel Goldberg, J.D., Ph.D. Associate Professor, University of Colorado Anschutz Medical Campus Omar Sultan Haque, M.D., M.T.S., Ph.D. Lecturer on Global Health and Social Medicine, Harvard Medical School Jasmine E. Harris, J.D. Acting Professor of Law and Martin Luther King, Jr. Hall Research Scholar, University of California Davis School of Law Thomas Hart, J.D. Disability Policy Engagement Director, Anthem Inc. Caroline J. Huang, D.Phil. Bioethics Fellow, National Institutes of Health Clinical Center Emily A. Largent, J.D., Ph.D., RN Assistant Professor of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine Marie-Eve Lemoine, Ph.D. Candidate, University of Montreal Craig Konnoth, J.D., M.Phil. Associate Professor of Law, University of Colorado Law School Medha D. Makhlouf, J.D. Assistant Professor and Director of the Medical-Legal Partnership Clinic, Pennsylvania State University Dickinson Law Mason Marks, M.D., J.D. Assistant Professor, Gonzaga University School of Law; Affiliate Fellow, Yale Law School Information Society Project Govind Persad, J.D., Ph.D. Assistant Professor, University of Denver Sturm College of Law C. Taylor Poor, J.D. Staff Attorney, Legal Aid Society of New York City Vardit Ravitsky, Ph.D. Associate Professor of Bioethics, University of Montreal Mary Varney Rorty, Ph.D. Clinical Associate Professor, Stanford Center for Biomedical Ethics Ani B. Satz, J.D., Ph.D. Professor of Law and Public Health, Emory University School of Law and Rollins School of Public Health Wendy Salkin, J.D., Ph.D. Assistant Professor of Philosophy, Stanford University Carmel Shachar, J.D., M.P.H. Executive Director of the Petrie-Flom Center, Harvard Law School Tom Shakespeare Professor of Disability Research, International Centre for Evidence in Disability, London School of Hygiene and Tropical Medicine Anita Silvers, Ph.D. (1940–2019) Professor of Philosophy, San Francisco State University

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Notes on Contributors

Vardit Ravitsky, Ph.D. Associate Professor, University of Montreal Matthew S. Smith, J.D. Research Associate, Harvard Law School Project on Disability Michael Ashley Stein, J.D., Ph.D. Executive Director, Harvard Law School Project on Disability; Visiting Professor, Harvard Law School David Wasserman, J.D., M.A. Faculty, National Institutes of Health

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Introduction Carmel Shachar, I. Glenn Cohen, and Michael Ashley Stein

Historically and across societies, people with disabilities have been stigmatized and excluded from social opportunities on a variety of grounds. These justifications include assertions that people with disabilities are biologically defective, less than capable, costly to treat and employ, suffering, or fundamentally inappropriate for social inclusion. Rethinking the idea of disability so as to detach being disabled from inescapable disadvantage has been considered a key to the twenty-first century reconstruction of how disablement is best understood. Such “destigmatizing,” however, has prompted hot contestation about disability. Bioethicists in the “destigmatizing” camp have lined up to present non-normative accounts, ranging from modest to audacious, that characterize disablement as “mere difference” or in other neutral terms.1 The arguments for their approach range from applications of standards for epistemic justice to insights provided by evolutionary biology. Conversely, other bioethicists vehemently reject such non-normative or “mere difference” accounts, arguing instead for a “bad difference” stance. “Bad difference” proponents contend that it is correct to weigh disability negatively.2 The “mere difference” versus “bad difference” debate goes beyond the halls of academia. The choice of disability framework can have serious implications for legal and policy treatment of disability, and shape strategies for allocating and accessing healthcare. For example, the framing of disability impacts the implementation of the Americans with Disabilities Act (ADA) and other legal tools designed to address discrimination. The characterization of disability also has healthcare allocation and accessibility ramifications, such as the treatment of preexisting conditions preclusions in health insurance. For example, proponents of disability as “bad difference” warn that destigmatizing disability could be dangerous because social support for medical programs that prevent or cure disability is predicated on solidarity hinging on a disability being a condition that it is rational to avoid. Construing disability as

1 2

Elizabeth Barnes, The Minority Body (2016), 4. See Guy Kahane and Julian Savulescu, Disability and Mere Difference, 126 Ethics 774 (2016).

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Introduction

normatively neutral thus could undermine the premises for resource support, access priorities, and cultural mores on which the practice of medicine depends. The purpose of this volume is not to construct a framework of disability that will ultimately resolve the question of “mere difference” versus “bad difference.” Rather, we seek to explore how the characterization of disability can have strong impacts on our medical, legal, and social structures. Many of the contributors to this volume lean towards the “mere difference” camp. Their work points to areas where utilizing this framework can result in less problematic, “fairer” policy solutions, such as revisiting immigration law to remove stigmatizing assumptions about the connections between disability and economic dependence in Part IV, or revising rules around organ transplantation to let disabled individuals participate more fully in both donating and receiving organs in Part III. Other contributors to this volume – inspired by, if not completely allegiant to, the “bad difference” view – tease out when negative ramifications of disability result from social structures and when they are based in biological realities, such as in the exploration of chronic pain in Part III. The contrasts in the frameworks used by the various authors force readers to consider their own conception of disability and the policy ramifications of that choice. The volume begins, though, with Tom Shakespeare setting the stage for the explorations to come in the connections between disability framing and policy. Shakespeare identifies several important themes that appear throughout the volume. First, Shakespeare raises the importance of honoring and acknowledging the diversity of disability. Part of the challenge of framing disability, whether the “mere difference” or another framework is more appropriate, is that disability can encompass a wide range of conditions. While individuals with blindness and individuals with mental health concerns can both be considered disabled, their impairments have relatively little in common. In some cases, it may be the specific condition that determines where the “mere difference” framework or a different conception of disability is best applied. The diversity of disability can also have important policy implications. It is easy to say that physicians’ offices must be made more accessible to all patients, no matter the type or level of disability, as explored in Part III by Adam Cureton. But consider the work of Rebecca Dresser in Part II and Matthew Smith, Tara Allison, and Michael Ashley Stein in Part IV, each of whom discuss issues around consent and capacity, an under-addressed component of accessibility. The complication that people with dementia were once considered “fully competent” while many with intellectual disabilities are never considered fully competent despite functional capability creates a distinction in the central questions raised in the two chapters. How do we honor the wishes of the past “competent” self without negating the wishes of the current impaired self in the case of dementia patients, while on the other hand better respecting the human rights of people who have always been defined as limited by their impairments to engage in sexual (and other) activities? The work of Marie-Eve Lemoine and Vardit Ravitsky in Part II around disclosure of information to couples whose fetuses test

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Introduction

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positive for Down syndrome further reinforces the diversity of the disability experience. Lemoine and Ravitsky explore concepts of determination, consent, and capacity similar to Dresser, Smith, Allison, and Stein, but in the context of decisions that will prevent the existence of the individual with a disability entirely. Another theme that runs throughout the book, identified by Shakespeare, is the need for additional information about the realities of disabilities. In some ways, this theme picks up on work covered in the Petrie-Flom Center’s previous volumes, including Big Data, Health Law, and Bioethics3 and Transparency in Health and Health Care in the United States,4 which explore the importance of data in directing and improving healthcare. Without empirical information about the lives of people with disabilities, it is too easy for scholars and decisionmakers to adopt framings of disability that do not reflect reality, leading to bad public policy. Indeed, Part VI is dedicated to better quantifying the experiences of those with disabilities and translating this quantification into actionable policy recommendations, such as in the work of Govind Persad and Nir Eyal. But the importance of better data is a seam woven throughout the book, for example, in Lemoine and Ravitsky’s Part II contribution on providing information on Down syndrome to expectant parents as to make better informed decisions about terminating fetuses with that condition. Even in chapters not explicitly about information, the value of data shines through. For example, in Part V Wendy Salkin develops and examines the idea that judges can adequately represent the interests of the severely intellectually disabled as their representatives. To provide this judicial representation, however, these judges would clearly need significant information about the experiences of those with intellectual disabilities. Throughout the volume readers should be asking themselves questions regarding the importance of data such as, “what information about a particular disability is missing from the policy discourse?”, “how can this information be better conveyed to decisionmakers?”, and “would information about the lived experiences of people with disabilities cause me to shift the framing of disability I would adopt?” Shakespeare then turns to the flipside of rights – the obligations or duties that are imposed when individuals are accorded rights. In a volume that seeks to place disability framing and philosophy within legal and health policy, the reader will constantly encounter questions as to what the obligations are of our legal and healthcare systems to people with disabilities. Several authors provide an overview of those rights and obligations, especially as it applies in areas of law, such as Daniel Goldberg in Part I and Craig Konnoth in Part V. Other contributors look at similar questions, but applied to the medical field, such as Ani Satz in Part I, as well as Omar Sultan Haque and Michael Ashley Stein in Part III.

3 4

I. Glenn Cohen et al. (eds.), Big Data, Health Law, and Bioethics (2018). I. Glenn Cohen et al. (eds.), Transparency in Health and Health Care in the United States (2019).

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The book is divided into six parts. Part I, introduced by I. Glenn Cohen, is intended to provide an orientation to the reader of some of the theories and framings that will be used throughout the volume. In particular, the three chapters in Part I demonstrate to the reader the harms that certain framings of disability can pose. When disability is defined as a problematic deviation from “normal,” it can give rise to disability stigma. Additionally, it can warp systems into creating problematic policies that only serve to harm and undermine people with disabilities, rather than to empower them. Part I, therefore, can be read as a warning against assuming there is a true “normal” for human beings, or that species-typical functioning should be the goal for all individuals. Elizabeth Barnes, in Chapter 1, “Disability, Health, and Normal Function,” pushes back on one of the all too commonly accepted theories of “normal” health. Her piece takes apart the idea that there is a “biological norm of species-typical functioning” and takes umbrage with the assertion that disability or illness can be considered a deviation from this “normal.” Barnes cuts to the heart of the argument she critiques when she argues that one cannot hinge disability on a reduced ability to survive and reproduce, because many disabilities do not impact either of those abilities. Instead, she notes that it is possible to function well as an individual with a disability even if one does not achieve species-typical function. This pushback on the framing of disability as not “normal” sets an important tone for the rest of the volume, reminding the reader that disability and an inability to function do not go hand in hand. Ani B. Satz, in Chapter 2, “Healthcare as Eugenics,” seeks to understand and then critique the connection between disability as a negative deviation from “normal” and the healthcare system. In some respects, Satz’s chapter is the applied version of Barnes’s – both critique a similar framing of disability, one from a philosophical perspective and the other through tracing its impact in our medical system. Satz asserts that the American healthcare system currently prioritizes normalizing individuals by preventing, ameliorating, or eliminating disability because medical providers are trained to view disability as a problematic deviation from normal species functioning. As a result, the healthcare system ignores other, equally or more effective atypical methods of functioning that could be used by people with disabilities. Satz labels this as a form of “negative eugenics,” arguing that this approach devalues people with disabilities and ensures that they receive suboptimal healthcare. Daniel Goldberg closes Part I with Chapter 3, “Epistemic Injustice, Disability Stigma and Public Health Law.” While Satz focuses on the healthcare system, Goldberg explains the harmful connection between disability stigma and public health law and policy. Goldberg uses the concept of “epistemic injustice,” or the harms that come when one’s capacity as a knower is undermined, to articulate how the negative framing of disability harms people with disabilities in the public health context. He demonstrates that disability stigma contributes to both testimonial and

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hermeneutic injustice when it comes to public health, leading to policies that discount and devalue the lived experiences of those with disabilities. Part II of this volume, “Disability in the Beginning and the End of Life,” also introduced by I. Glenn Cohen, considers the impact that disability can play on decisions relating to the beginning and end of life. Each chapter wrestles with situations in which nondisabled actors make decisions on the lives, value, and autonomy of the disabled. The first chapter of this section explores when the state substitutes its judgment in lieu of allowing pregnant women to determine their reproductive choices, on the basis that pregnancy somehow diminishes their decision-making capabilities to the point of disabling them. The second chapter of this section explores the challenges of expectant parents using prenatal testing to determine whether to continue with pregnancy, even if that pregnancy leads to a child with a disability. The last chapter focuses on the difficulties between weighing the preferences of an individual at different points of their struggle with dementia and whether to honor the wishes of the previously competent patient or to respect the value of the life of the current patient living with late-stage dementia. In each case, the importance of framing disability correctly, and the impact that framing choices have on public policy, is front and center. In the opening chapter of this part, “Abortion, the Disabilities of Pregnancy, and the Dignity of Risk,” Mary Anne Case argues that abortion jurisprudence and bioethics frame pregnant women as disabled. Drawing from examples in both American and German case law, including Gonzales v. Carhart, she contends that judges such as US Supreme Court Justice Kennedy often assume that women are not capable of being rational decisionmakers because their faculties have been disabled by pregnancy. In some cases, this assumption supports access to abortion; for example, in Germany women pregnant with a fetus with diagnosed disabilities are presumed to be under sufficient mental strain to justify legal late term abortions. In other cases, this paternalistic assumption that pregnant women are overwhelmed to the point of disability by their condition can be used to undermine access to abortion, such as when Justice Kennedy argues that the risk of women coming to regret their abortions justifies preemptively limiting their access to this procedure. Case, in her work, reminds the reader that pregnant women should be given the dignity of risk – the ability to make choices even if they may later regret those choices – rather than being assumed to be diminished mentally or emotionally by their pregnancies. She does so by drawing upon the work of disability scholars and advocates to emphasize the importance of allowing individuals the dignity of risk, regardless of abilities, to allow for true independence. Marie-Eve Lemoine and Vardit Ravitsky, in Chapter 5, “The Down Syndrome Information Act and ‘Mere Difference’: Redefining the Scope of Prenatal Testing Conversations?”, explore the ethical considerations in counseling pregnant women who consider testing their fetuses for Down syndrome. Lemoine and Ravitsky explore the different frameworks used to justify prenatal testing for Down syndrome,

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arguing that there has been a shift away from public health justifications to a desire to promote informed choice among pregnant women. In order to properly facilitate that choice, they note, advocates have pushed for regulations requiring that health professionals offering these tests provide complete information on Down syndrome, including its positive aspects. The authors locate motivations for these laws in the framing of disability – in this case, Down syndrome – as “mere difference.” While Lemoine and Ravitsky are ultimately supportive of the concern to avoid unnecessarily negative depictions of Down syndrome, they also argue that the “failure of our societies to provide social and physical environments that maximize everyone’s wellbeing and social participation” ought to be an important factor in prenatal testing conversations. Rebecca Dresser, in Chapter 6, “Dementia, Disability, and Advance Directives: Defensible Standards for Dementia Care,” brings us from the beginning of life to the end of it. Dresser attempts to untangle the challenges around supporting patient decision-making in the context of dementia care. She notes that many patients seek to use advance medical directives to prevent extended life with dementia, to the point of authorizing the withholding of ordinary food and water in late-stage dementia. These advance directives present a major tension in promoting respect for autonomy and self-determination: can competent individuals, i.e., the “current” patient, dictate care for and even discriminate against their later disabled selves, i.e., the “future” patient? Dresser argues that allowing advance directives that promote harm against the future self should be seen as discrimination that reinforces negative judgments of the value of disabled people. In a way, Dresser’s piece can be read as a companion to Lemoine and Ravitsky’s contribution, because both chapters explore to what extent nondisabled actors should be allowed to make decisions about the lives of disabled individuals, even to the point of choosing nonexistence of these individuals. Part III, “Disability in the Clinical Setting,” introduced by Carmel Shachar, addresses the framing of disability in the medical system, most specifically in the delivery of clinical care. The contributions in this section note again and again the challenges that people with disability face in achieving access to care. These barriers to care are often motivated by “ableism,” as discussed by Omar Sultan Haque and Michael Ashley Stein, and are expressed in the very structures of our medical system, as documented by Adam Cureton. While revising the framing of disability to that of “mere difference” can often lead to improved public policy, chapters by Emily Largent, Caroline Huang, and David Wasserman caution us not to treat all disability as alike and to consider when we should use a different framing to result in the best clinical outcomes and treatments. Adam Cureton, in Chapter 7, “Expressing Respect for People with Disabilities in Medical Practice,” examines the physical environments of the healthcare system that confront patients with disabilities. This includes not only the structure of waiting and examination rooms, but also the staff of the healthcare system – including physicians,

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nurses, etc. – who often act carelessly or even harmfully when interacting with people with disabilities, as well as the policies of these environments. Cureton emphasizes the importance of respect as “one of the most important attitudes that we should strive to cultivate because of its connections with the dignity that all humans equally share.” The failure of the medical environment to express respect for its users with disabilities is unjust, and communicates that the rights of disabled people are unimportant and that disabled people are “less than” other patients or even objects. Emily Largent, in Chapter 8, “Disabled Bodies and Good Organs,” also explores the negative framing of disability woven into the medical system by considering transplantation policies as applied to disabled donors and recipients. She acknowledges that disabled individuals often face additional hurdles in accessing scarce organs but, disturbingly, are often seen as a good source of organs. Largent then suggests that using the “mere difference” framework would allow for better access for disabled organ recipients while treating disabled potential organ donors similarly to other potential organ donors. Incorporating the “mere difference” framework, therefore, will lead to an overall more equitable transplantation system by incorporating such public policy changes as revising the dead donor rule and adding better procedures to ensure that individuals being evaluated for organ recipient lists are given reasonable accommodations as required by anti-discrimination laws. Omar Sultan Haque and Michael Ashley Stein, in Chapter 9, “Humanizing Clinical Care for Patients with Disabilities,” consider the prejudices against people with disabilities present in the medical system, describe the impact that this “ableism” has on the experiences that patients with disabilities face when pursuing medical care, including impacting clinical outcomes, and suggest interventions that would improve the framing of disability used by many clinicians. Haque and Stein, similar to Cureton, trace the indignities and prejudices present in the clinical system, noting that they result in unequal access to care and undermine the clinician-patient relationship itself. Fortunately, they argue, this pervasive ableism can be combated through improved educational and clinical interventions, such as including a section in the medical records where clinicians can document biases that may arise for their patients with disabilities and encouraging clinicians to provide this information in the presentation of patients on clinical rounds. These are important tools for shifting the framing of disability in the minds of clinicians from an ablest mentality to that of “mere difference.” Caroline Huang and David Wasserman close Part III with their contribution, “Chronic Pain As a Challenge for Disability Theory and Policy,” by exploring the challenges of applying the “mere difference” framework to chronic pain. They note that chronic pain has much in common with more familiar disabilities in that it substantially limits functions and elicits stigmatizing social responses. Chronic pain, however, is challenging in that it can vary in duration and persistence, and often can be difficult to validate with outward signs. Also distinguishing chronic pain, they argue, is the fact that it is intrinsically bad – it confers no benefits and makes life

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worse for people who live with it. Therefore, they argue, the “mere difference” framing is helpful but not always the right lens to use to understand this condition. The most significant outcome, they note, of the difference between chronic pain and other conditions that lead to disability is that, while there should be a right to pain relief, this right comes with significant responsibilities on the rights-holder. At heart, Huang and Wasserman maintain, “the case of [chronic pain] makes it clear that disability theory, practice, and policy cannot be one-size-fits-all.” This is an interesting contrast to many of the other contributions, especially in Part I, that act as strong proponents for the “mere difference” frameworks. Part IV, “Equality, Expertise, and Access,” introduced by Michael Ashley Stein, considers the connection between rights and access. Access, in the case of these three chapters, varies from the clinic to the bedroom but reflects the assertion that there is no equality without some sort of meaningful access to social participation and experiences. The authors of these contributions consider whether our current rights regime is sufficient to overcome barriers to access and, all too often, find that this is sadly not the case. In one chapter, the reader is asked to consider whether better access to a certain type of information will actually improve the disability rights regime – an interesting flip on the relationship we explore in this part. Leslie Francis and Anita Silvers open this section with Chapter 11, “Making ‘Meaningful Access’ Meaningful: Equitable Healthcare for Divisive Times.”5 Francis and Silvers explore meaningful access as a cornerstone of addressing harms imposed by disability discrimination. They are concerned with the distinctions between pursuing accommodations and modifications to achieve meaningful access, arguing that accommodations, which are personalized or individualized, are often mistaken for more global modifications by courts reviewing claims of disability discrimination. The risk inherent in this misidentification is that modifications are more likely to be rejected as unfair privileges, unreasonably expensive interventions, or fundamentally altering the service or benefit in question. Francis and Silvers suggest the differences between accommodations and modifications are particularly salient in the healthcare context. Unfortunately, especially when it comes to Medicaid coverage decisions, courts are particularly prone to make these confusionbased errors. Francis and Silvers note that, while modifications are appropriate in some contexts, it is important to clarify the types of solutions being requested to best promote meaningful access in healthcare. Jasmine Harris continues to explore issues of access in Chapter 12, “The Privacy Problem in Disability Antidiscrimination Law.” In this contribution, the reader is asked to consider the importance of access to information and its counterpart, 5

This volume began its journey as a collective effort with Anita Silvers, and was completed after her passing. She was a dear friend, colleague, and mentor for over twenty years. I benefitted immeasurably from Anita’s wisdom as one of the rare academics with visibly discernable disabilities writing within the disability field. And I was blessed to have been touched by her joyful personality and indomitable spirit. Michael Ashley Stein.

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privacy, in the context of disability. Harris challenges the predominant privacy approach to disability status, that government institutions, employers, and private actors have treated disability identity as a private fact that must be given heightened privacy status. She argues that we should privilege disclosure of disability identity as supporting the core values of disability antidiscrimination law: integration, acceptance, and destigmatization. By assuming that disability identity carries a sufficient stigma to justify the current privacy approach, Harris worries that we are not advancing the goal of disability rights law, which is for people with disabilities to live in the world with full access. One of the innovations of Harris’s contribution is her suggestion that rights seem to follow access, rather than rights conferring access. Without access to disability status information, it is more difficult to implement a rights regime that will result in the achievement of the goals of disability antidiscrimination. Matthew S. Smith, Tara Allison, and Michael Ashley Stein close Part IV with Chapter 13, “Sexual Agency as a Rights-Based Imperative for Persons with Intellectual Disabilities.” They consider the role of rights in ensuring access to sexual intimacy for people with intellectual disabilities. These individuals have often been denied the ability to express their sexuality by guardians, caregivers, and service providers. Smith, Allison, and Stein consider the constitutional and civil rights protections available to Americans with intellectual disabilities and find that they fail to protect against these paternalistic incursions on autonomy. By contrast, they argue, individuals with intellectual disabilities may find more protection for their sexual expression in both international rights-based constructs that compel positive state action to protect these rights, and an “architecture of intimacy” conceptual framework that likewise compels state action. Pursuing this internationally inspired, positivist human rights approach will not only fulfill the human rights imperative to ensure full community inclusion for persons with intellectual disabilities, which includes sexual intimacy, but also bring the reality of these individuals closer to the American ideals of freedom and liberty. Carmel Shachar introduces Part V, “Disability, Intersectionality, and Social Movements,” which focuses on the interplay between the framing of disability and the rights that people with disabilities can be expected to enjoy. Part V opens with an exploration of an area of law, immigration, that remains weighed heavily against individuals with disabilities because it relies on negative framing of disability, including that disability is a “bad difference” or a public health concern. The reader is then asked to consider how various framings of disability have shaped the field of disability rights, both in terms of bestowing resources and rights, and curtailing them. Last, this section explores situations in which the “mere difference” framing of disability is not an easy fit, when we consider how to appropriately champion the rights of the intellectually disabled from the bench. This asks the reader to consider alternative tools, such as representation, as well as the obligations of other actors to promote the interests of those with disabilities.

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Medha D. Makhlouf opens this part with Chapter 14, “Destigmatizing Disability in the Law of Immigration Admissions,” by tracing the treatment of disability within American immigration law. She notes that immigration law has been directly shaped by the framing of disability. At the turn of the century, disability was perceived as a strong negative, with implications for future generations, and people with disabilities were considered economic burdens. This framing led to regulations that treated disability as a presumptive disbarment to immigration. Makhlouf argues that the “bad difference” framing of disability is still persuasive in immigration regulations because the relevant exclusions portray applicants with disabilities as being useless, marginal, and a burden on society. In order to reshape immigration law to hew closer to the “mere difference” framing of disability, Makhlouf proposes that we must consider disability as a form of human variation and acknowledge the value of supporting the immigration of people with disabilities. Craig Konnoth continues the exploration of the connection between the framing of disability and rights in Chapter 15, “The Normative Bases of Medical Civil Rights,” which explores the origins of disability rights in the prevailing paradigms of the day. Konnoth argues that disability rights are “best explained by how society conceives of the onset and causes of disability.” In the first wave of disability rights regulation, policymakers were informed by a model of disability as bad luck and therefore motivated to offer resources for people with disabilities. The second era’s dominant disability paradigm was, by contrast, disability as deriving not only from a lack of resources, but also from a lack of social regard and respect, similar to the disability as “mere difference” framing discussed throughout this volume. This yielded regulations that sought to alleviate social harms rather than provide welfare resources, such as the Rehabilitation Act and the ADA. Konnoth reminds us that these approaches to disability regulation have not fully displaced prior understandings based in individual fault, as a result of which rights and resources afforded to people with disabilities are limited. This chapter serves to remind the reader that the passage of time is not always synonymous with forward progress and that better framing and treatment of disability as time moves on should not be taken for granted. Wendy Salkin, in Chapter 16, “Judicial Representation: Speaking for Others from the Bench,” considers the rights of individuals and groups to be represented in key proceedings, even when they cannot participate directly themselves. Salkin focuses her arguments on the example of judicial representation of people with severe intellectual disabilities by judges who are not intellectually disabled. Using Cleburne v. Cleburne Living Center6 as an example, with a special focus on Justice Marshall’s partial dissent in the case, Salkin concludes that judicial representation may be appropriate in certain circumstances. Certainly, Salkin acknowledges that there are concerns as to whether members of the judiciary could adequately represent a group of which they are not a part, but in situations in which it is not 6

473 U.S. 432 (1985).

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possible for a member of that group to serve as a judge, there is a special responsibility for the judiciary to represent their interests. While this chapter does not directly discuss the “mere difference” model of disability, it raises interesting questions about appropriate responses when the challenges facing people with certain disabilities are not wholly derived from social constructs. Part VI, “Quantifying Disability,” with an introduction by William P. Alford, explores the challenges of trying to measure disability, especially in the context of the “mere difference” framing. These chapters ask the reader to consider how we can measure whether certain interventions are feasible, how to reflect the realities of living with a disability in healthcare resource allocation and prioritization, and how to update regulations to avoid “quantifying disability discrimination” through the use of new technologies. Throughout each of these chapters is an important thread for the reader: the choice of how we frame disability reflects how we attempt to measure it and how we incorporate those measurements into our public policies. Nathaniel Z. Counts, C. Taylor Poor, Julie Erickson, Thomas Hart, and Kelly A. Davis, in Chapter 17, “Can We Universally Accommodate Mental Health and Should We? A Systematic Review of the Evidence and Ethical Analysis,” conduct a systematic review of articles published in medical journals to identify evidence for potential universal accommodations in mental health. Counts et al. argue that the ADA reflects, in part, the social model of disability through its emphasis on universal accommodations for physical disabilities. By contrast, they note, the ADA did not provide for universal accommodations in mental health, instead emphasizing individual accommodations as the potential solution for individuals with mental health challenges. This is problematic because universal accommodations “more fully realize the ethical objectives of the social model than individualized accommodations.” From a review of the relevant literature, the authors identify a small number of articles documenting the application of universal accommodations in response to mental health needs, suggesting that mental health conditions do not uniquely require individualized approaches for accommodations. While the authors acknowledge a need for further research into the applicability of universal accommodations in this area, they suggest that the social model of disability and the need to provide equity in treatment across physical and mental health conditions are compelling reasons for adopting the universal accommodations approach. Mason Marks, in Chapter 18, “Algorithmic Disability Discrimination,” considers the threat of disability discrimination in the application of artificial intelligence (AI) technology. Mason notes that, with the rise of AI-based tools, disability-related information that would have previously been confined to the individuals in question, their doctors, family members, and other confidants, may be collected and analyzed by corporations based on purchase histories, social media posts, and internet habits. Alarmingly, current data privacy regulations do not appear to protect

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people with disabilities against such data mining, nor does disability antidiscrimination law as it currently stands sufficiently protect against AI-generated conclusions that may devalue people with disabilities. In order to prevent AI from contributing to the social construction of disability, as argued by the “mere difference” framing of disability, Mason contends that we must amend existing regulations to limit the mining of disability-related data and otherwise strengthen our data protection laws. This chapter is particularly interesting in the context of the rest of the volume because it traces the rise of a modern socially constructed burden on people with disabilities, strengthening the argument that disability arises, at least in part, from social choices and framing. Govind Persad picks up some of the challenges of trying to account for the “mere difference” framing of disability in healthcare resource prioritization and resource allocation in Chapter 19, “The Pathways Approach to Priority-Setting: Considering Quality of Life While Being Fair to Individuals with Disabilities.” Persad maintains that the use of quality-adjusted life-years (QALYs) to set healthcare priorities devalues people with disabilities. Instead, we should consider the pathways, as Persad terms it, via which disabilities impose disadvantages. For pathways that are the result of the laws of nature, resource scarcity, or permissible trade-offs, policymakers should be allowed to take disability into account when setting priorities. For other pathways, similar to the social constructs and discrimination reflected in the disability as a “mere difference” model, disability should not be considered when allocating resources, at least not to deny individuals access. Persad argues that this pathways approach allows us to avoid acting “as if we were in a perfect world where disabilities imposed no disadvantages, nor . . . as if all the disadvantages that disabilities impose can be reduced to a single number and used to set priorities without regard to social justice.” Lastly, Nir Eyal, in Chapter 20, “Measuring Health-State Utility via Cured Patients,” tries to reconcile the discrepancy between the assessments of quality of life articulated by patients with disabilities who have adapted to the reality of their conditions and the quality of life assessments of the more general public or that of health professionals. Eyal proposes that we heavily weight the assessments of longtime patients but keep in mind “the sound reasons that sometimes exist to disfavor these assessments,” in part because all humans are fallible, and in part because some of the assessment by longtime patients may be colored by their adaptive responses. Eyal works to demonstrate how comparing the quality of life assessments of former patients who had experienced the relevant health state but then were “cured” could yield a new measure that would allow us to calibrate current patients’ assessments. The characterization of disability as “mere difference,” by emphasizing the role that social structures play in the challenges faced by individuals with disability, can have important policy and ethical implications. The authors of this volume present a nuanced view of the framing of disability, exploring ways in which the choice of

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framing can have an impact on our medical and legal public policies and on the lives of those with disabilities. While this volume does not resolve the debate between whether and to what extent disability is socially constructed or is rooted in inherent biological challenges, it does articulate the importance of understanding which framework is being utilized when we make decisions around resource allocation, the rights of the individuals, the obligations of society to those individuals, and the interaction of professionals – including physicians and judges – with those with disabilities.

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Preface Tom Shakespeare

It may be paradoxical to approach a book which concerns so many problems with such joy but, nevertheless, I greet this volume of law and ethics as applied to diverse disability dilemmas with gratitude. The scholars here assembled have done the rest of us a huge service in thinking so effectively through a whole series of difficult issues. Not least our late friend and colleague Anita Silvers, for whose forensic thought and generous hospitality I will always retain the highest regard, admiration, and fondness. Her death is a great loss for our field, as was that of Adrienne Asch a few years back. To their memory we owe our continued dedication to work seriously and in a friendly manner on these important questions. In this preface, I claim the luxury of referring to a few cross-cutting questions that occur to me as significant, raising them here impertinently but offering no wise solutions, merely the urging that we expand and deepen our engagement with disability law and ethics so as to address these and other issues that are always arising and challenging us. I wonder, for example, about what ethical and legal questions the US opiate epidemic raises. It’s easy to spot gaps, but nevertheless timely for us to attend to current difficulties, drawing appropriately on our past insights. Nor am I exempting myself from oversight when it comes to the most pressing human tragedies. The first question is that of the diversity of disability. I have long thought that some of the failure of mainstream, usually consequentialist, bioethicists and disability rights advocates and thinkers to engage with each other is due to a divergent conceptualization of disability itself. The bioethicists who view with alarm lives that appear to be full of suffering, dependency, and even futility are equating disability with its more serious and troubling cases, such as Tay-Sachs, motor neuron disease, or profound autism. The advocates and thinkers who respond by claiming disability as mere difference or pointing to the role of environments and barriers as comprising the true character of disability may sometimes be equating it with its less biologically determined variants, including deafness, paraplegia, restricted growth, or Asperger’s syndrome. Rather than speaking of “disability” dilemmas, then we xxix

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should surely speak of “disabilities dilemmas,” to which there are a range of responses that need careful nuance and detailing to capture the complexities and specificities. To be sure, there are cross-cutting issues to which we should attend: prejudicial cultural representations, the need for reasonable adjustments, and so forth. Not only illness and impairment, but also responses to illness and impairment are more variable than either advocates or mainstream ethicists and lawyers might suppose, and our accounts should capture that. The second question that occurs to me in reading this volume is about the very many empirical questions that are not yet settled. Here, the blame surely lies at the feet of the social science community of which I am a member, as well as our clinical and biomedical colleagues. For example, I am troubled that we do not fully understand the quality of life of an average person with Down syndrome and their family members. There are accounts from that community, and there is quality of life literature, but there is not a natural history of the condition that is accepted by all sides, which makes it very difficult to give prospective parents helpful guidance, as the chapter by Lemoine and Ravitsky indicates. And what is true for trisomy 21 is also true for many other conditions, not least because healthcare is improving, treatments and technologies are becoming available, life expectancy is advancing, and so old data and recommendations appear pessimistic. A related challenge is raised by Huang and Wasserman’s chapter on chronic pain. It’s all very well that we have an organic basis for the neuropathic pain that people like myself suffer as a consequence of spinal cord injury, but very troubling that many conditions such as fibromyalgia, chronic fatigue syndrome, and other Medically Unexplained Symptoms continue to be so ontologically and epistemologically uncertain. Not for the first time I resort to that ubiquitous phrase: more research needed by the scientists and social scientists. As an aside, I found Barnes’ contribution here especially delightful, in elegantly dismantling the assumptions of the Boorsean normal function view of disability, and thus demonstrating that more thinking is also needed by philosophers and lawyers. My third question is about naming the duty-bearers, to use a term of art from the human rights field. A treaty such as the Convention on the Rights of Persons with Disabilities is expansive in its vision of promoting, protecting, and ensuring the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and promoting respect for their inherent dignity, to quote from Article 1. Yet, whose job is that? It does not just happen because a state ratifies the Convention; over the last decade, progress has been slow, uneven, and even retrograde in the case of my own country. The Convention is pioneering in combining negative freedoms with positive freedoms. Fully implementing the Convention obviously requires much more than simply respecting civil and political rights. But who ensures that persons with disability have access, for example, to family life, as Smith, Allison, and Stein discuss in this volume? When it comes to disability, something positive is required to ensure access to many of these human rights, and

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most states have so far been deficient. Moreover, duty-bearers cannot simply be policymakers. Health and social care professionals play an important role, but the rest of us cannot ignore our own responsibilities, not least parents and family members. And even after we have settled these important legal questions of state and professional action, there remains our own need for ethics guidance and support with troubling dilemmas. I have never forgotten how Rayna Rapp once wrote of amniocentesis that it “makes every woman (to which I would add ‘and man’) into a bioethicist.” Now that we are opening up possibilities of medical decision-making and increasingly turning to lay people and patients to exercise choices, how much wise guidance and support are we able to give to people contemplating prenatal screening, treatment decisions, end-of-life decisions, or decisions to participate or not in clinical trials? In an era when genetic knowledge shows how each of us is vulnerable to disease or disability, these questions increasingly concern us all. My final question (for now) is about another aspect of diversity, building on that last thought. Readers outside the United States may be frustrated that this is a volume that is often very located in the particular North American legal and rights traditions. But notwithstanding that grounding, there is also the question of the many cultural differences within the United States (and certainly beyond it). I am thinking that the legal subjects with which this book is concerned may be from secular, Christian, Muslim, Jewish, Hindu, New Age, or other ethical traditions, or none. Given that religion is part of life for some people, and an influence on their thinking for many others, we might need an account of how thoughts about embryos, healthcare, suffering, and dying often impinge, implicitly if not explicitly, on religion. My own current work is concerned with disability and development and I am struck, reading the literature, by how little we know about how people in East Africa, or South Asia, or Latin America, formulate questions of reproduction, parenting, or end of life. There are many relevant cultural differences which stop me in my tracks and reveal how my own assumptions are cloaking realities as experienced by my research participants. I hope it can be seen as a tribute to this collection that a reader is prompted to raise questions like these. It’s certainly not a criticism. There is much work to do, for lawyers and philosophers and social scientists of all kinds. I am thankful to the editors and contributors of this volume for challenging our assumptions, troubling our knowledge, and pointing out the gaps that remain. I am so abidingly glad that disabled and nondisabled scholars are coming to our aid and moving forward our thinking. I hope we can continue to have these conversations in the elegant and convivial way that Anita made her trademark.

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Acknowledgments

A book like this is the result of the hard work of many. We thank our student line editors Rosie Bichell, Grant Glovin, Margaret Mattes (lead line editor), and Andrew Skaras for their meticulous work. We are also grateful to Cristine Hutchison-Jones for her administrative support in putting on the conference that gave rise to this book as well as for her hard work shepherding all the many pieces of this manuscript. We thankfully acknowledge the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School, with support from the Oswald DeN. Cammann Fund, for conference sponsorship. We thank the Harvard Law School Project on Disability for its support and involvement in this project. We also are grateful to photographer Rick Guidotti and Positive Exposure for the photo empowering our cover. Finally, of course, we thank the contributors for their thoughtful and important scholarly contributions.

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Introduction to Part I I. Glenn Cohen

The chapters in Part I of this volume, “Disability: Definitions and Theories,” might just as easily be characterized as “The Perils of ‘Normal.’” Using philosophical methods, each of the chapters seeks to undermine assumptions made by those without disabilities about the moral lives of those with disabilities. In “Disability, Health, and Normal Function,” Elizabeth Barnes takes issue with the notion of “normal function” at the heart of naturalistic theories of health that one finds in some of the key work in the area, that of Christopher Boorse, Daniel Hausman, Norman Daniels, etc. Such views, to generalize a bit, endorse “a biological norm of species-typical functioning” and treat “diseases/ illnesses/ disabilities [as] departures from this species norm.” While also briefly discussing more external critiques of this kind of approach, Barnes’ main critique is an internal one: that such theories conceive of pathology as that which reduces “the ability to survive and reproduce,” but many of the things that are conventionally viewed as disabilities do not cause such reductions. Barnes attempts several charitable reconstructions of the normal function view – including tying it to benchmark environments or natural selection – but ultimately finds it remains problematic. The deeper problem with this view is that people with disabilities can function well without functioning normally (in the sense of species-typical functioning). Ani B. Satz’s “Healthcare as Eugenics” offers a different line of attack on the same set of theories. In harmony with Barnes, Satz understands these theories to “assume that atypical functioning is undesired, less effective, and to be avoided,” that is, that “typical or normal methods of functioning (such as walking) are valued over other forms of functioning (such as wheeling), often regardless of comparative effectiveness.” But Satz makes a provocative and confrontational critique: health care institutions adopting this viewpoint are effectuating a form of eugenics. She reviews the myriad ways “health care delivery and funding privilege and promote typical methods of human functioning over equally or more effective atypical methods of functioning, thereby promoting certain human traits” and concludes that “because the government extensively funds healthcare, the government at least tacitly supports these choices.” 3 on 08 Jun 2020 at 22:41:39, subject to the Cambridge Core terms of Downloaded from https://www.cambridge.org/core. University of Exeter, use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108622851.003

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In “Epistemic Injustice, Disability Stigma, and Public Health Law,” Daniel Goldberg uses a stream of philosophical thought associated with Miranda Fricker of “epistemic injustice,” the idea of being wronged in one’s capacity as a knower, to consider the way public health stigmatizes disability. Following this line of work, he distinguishes testimonial epistemic injustice – in which prejudice downgrades the speaker’s credibility – and hermeneutic epistemic injustice – in which prejudice obscures a significant area of social experience from collective understanding. He finds both present in the case of disability. For example, the testimonial epistemic injustice of making assumptions about the abilities of those with intellectual disabilities and the hermeneutic epistemic injustice of over-attention to the medical model of disability over the social model’s recognition that many of the injuries experienced by people with disabilities come from the underlying social structure. Among other insights, he develops a basic feedback loop model in “which both dimensions of epistemic injustice (testimonial and hermeneutical) reflect and feed disability stigma.” In their own way, each of the chapters interrogates the idea of “normal.” At one level, the critique is that the concept’s content is deeply contested terrain. At another, it is the idea that the concept, whatever the merits of its content, has been “weaponized” as a way of deciding whose voices carry authorities and whose do not. The strongest claim is that the concept is not just wrong in its reference set or wrong in its stigmatizing effects, but ultimately represents an attempt to eliminate the “other” from existence. These three chapters will certainly enlighten and provoke even those deeply enmeshed in these debates.

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1 Disability, Health, and Normal Function Elizabeth Barnes1

In philosophical discussions of health, no single idea has been more influential than the concept of “normal function.” Naturalistic theories of health, such as those defended by Christopher Boorse and Daniel Hausman, take normal function to be the central concept via which we should define and understand health.2 Proponents of such views argue that health is a purely naturalistic (rather than normative) concept that can be understood without reference to values or preferences. There is a biological norm of species-typical functioning, according to such views, and diseases, illnesses, and disabilities are departures from this species norm. But the influence of the idea of normal function extends well beyond purely naturalistic theories of health. Jerome Wakefield, for example, argues that disease has an inherently evaluative component, but that abnormal function is a necessary (though not sufficient) condition for disease.3 Norman Daniels argues for an incorporation of the idea of normal function into an account of health care resource distribution.4 And Tom Shakespeare argues that while it cannot be used to characterize disability, a Boorsian theory of normal function is how we should 1

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Many thanks to Ross Cameron, Jason Turner, Robbie Williams, and Liam Kofi Bright for helpful discussion. See generally Christopher Boorse, Health as a Theoretical Concept, 44 Phil. Sci. 542 (1977) (hereinafter “Boorse, Health as a Theoretical Concept”); Christopher Boorse, A Second Rebuttal on Health, 39 J. of Med. & Phil. 683 (2014) (hereinafter “Boorse, A Second Rebuttal on Health”). See also Daniel M. Hausman, Health, Naturalism, and Functional Efficiency, 79 Phil. Sci. 519 (2012) (hereinafter “Hausman, Health, Naturalism, and Functional Efficiency”); Daniel M. Hausman, Health and Functional Efficiency, 39 J. Med. & Phil. 634 (2014) [hereinafter “Hausman, Health and Functional Efficiency”]. See generally Jerome C. Wakefield, Disorder as Harmful Dysfunction: A Conceptual Critique of DSMIII-R’s Definition of Mental Disorder, 99 Psychol. Rev. 232 (1992) (hereinafter “Wakefield, Disorder as harmful dysfunction”); Jerome C. Wakefield, The Biostatistical Theory Versus the Harmful Dysfunction Analysis, Part 1: Is Part-Dysfunction a Sufficient Condition for Medical Disorder?, 39 J. Med. & Phil. 648 (2014) (hereinafter “Wakefield, The Biostatistical Theory Versus the Harmful Dysfunction Analysis”). See generally Norman Daniels, Just Health Care (1985); Norman Daniels, Just Health: Meeting Health Needs Fairly (2007).

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understand the notion of “impairment” that underwrites many contemporary definitions of disability.5 In gaining this sort of influence, a broadly Boorsian view of normal function has not lacked for criticism. But, in what follows, I want to press a particular line of criticism that I think deserves more attention. This line of criticism becomes especially salient, I think, when we look at the rich and thriving lives led by many disabled people. It is surely correct to say that many (perhaps all) physical disabilities involve “pathology” in the biomedical sense of the term. Regardless of whether you think that achondroplasia, spinal cord injury, absence of a limb, etc. automatically reduce your quality of life or have a directly negative impact on your well-being, these are all conditions for which you could legitimately seek medical intervention and assistance, and which could legitimately be said to affect your health in some way. This doesn’t make them bad in the normative sense, it doesn’t mean that “cures” are obviously the best thing, and it doesn’t entail that disabled people are always less healthy than their nondisabled peers. And it also, of course, doesn’t mean that disability can be fully explained by or reduced to biomedical pathology. But whatever the best account of “pathology” ultimately is, it seems clear that most physical disabilities involve pathology.6 And yet, it’s also clear that, for many disabilities, people live long and full lives with them. The standard normal function account, however, relies on the idea that negative departures from normal function – which are coextensive with pathology – reduce the ability to survive and reproduce. Normal function accounts, perhaps rightly, take many disabilities to be paradigm cases of pathology. And yet people with these disabilities often live perfectly normal lifespans and have children without problems. And so, to capture what are by its own rights paradigm cases of pathology, the normal function account must have some way of specifying how a functional ability can be reduced even when its actual practice does not seem to be reduced in any way. Call this the counterfactual problem. In what follows, I will argue that normal function accounts do not have a good answer to the counterfactual problem. I. SPECIES-TYPICAL FUNCTIONING

Let’s start by looking at by far the most well-known normal function account of health: the “biostatistical theory” that originates from the work of Christopher Boorse.7 Though the details of the account have evolved over time,8 the basic picture has remained relatively constant since Boorse first proposed it over forty 5 6

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Tom Shakespeare, Disability Rights and Wrongs Revisited (2014). This point is politically as well as theoretically important. Access to health care and health-related interventions are especially important for disabled people, and a key part of the disability rights platform. Lack of access to health care is particularly disadvantageous to disabled people at least in part because disabilities often or typically involve some biomedical pathology. See Boorse, Health as a Theoretical Concept, supra note 1(for the seminal presentation). See Boorse, A Second Rebuttal on Health, supra note 1(for a detailed discussion).

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years ago. And while other defenders of normal function accounts depart from Boorse in various ways, this has largely been a matter of quibbling with details. For Boorse, normal function is defined in terms of statistical typicality. An organism functions normally if it functions in a way that is statistically typical for comparison classes of its particular species matched for age and sex.9 In this context, the functioning of a part or process is the ability of that part or process to accomplish its basic biological goals or purposes (e.g., the function of the kidneys is to filter waste, the function of the cardiovascular system is to circulate blood, etc.). Boorse then construes the function of the entire organism – that is, its basic biological goals or purposes – as survival and reproduction. And so, an organism is functioning normally if it is able to accomplish its basic biological goals of survival and reproduction at a level that is statistically typical for members of its species matched for age and sex. The normal function of an organism can be understood, according to Boorse, in terms of the normal function of its parts and processes. A part or process is functioning normally if it is making a species-typical contribution to the organism’s ability to survive and reproduce. An organism is functioning normally if all its parts function normally.10 Likewise, an organism is functioning abnormally if one or more of its parts or processes is making a lower than typical contribution to its ability to survive and reproduce.11 It’s important to emphasize that not all departures from normal function are pathology. One way to function abnormally is to function unusually well. Boorse construes pathology as negative departures from normal function – departures from species-typical function that hinder the organism’s ability to survive and reproduce.12 For a part or process to be pathological, it must interfere with an organism in the 9

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The comparison class that determines statistical typicality has to be matched for both age and sex for the model to stand a chance of giving a workable account of “normal” function. Absence of menstrual cycles, for example, is abnormal in a 25-year-old female (assuming she isn’t pregnant), but normal in a 25-year-old male and in a 65-year-old female. Boorse doesn’t specify how we determine which things count as the parts of an organism, and this might turn out to be a fairly complicated question. Parasites and harmful bacteria that live in our intestines are, I take it, not our parts in Boorse’s sense, given that their normal function is inversely correlated with ours. But our normal function does require the normal function of lots of intestinal bacteria, so we can’t simply say that parasites and harmful bacteria aren’t our parts because they are in some sense separate organisms – at least if we’re going to have a view according to which the functioning of the organism is determined by the functioning of its parts. (And counting things as our parts just in case their functioning makes a positive contribution to our functioning looks circular.) More strongly, it’s just not at all obvious that the functioning of complex organisms like humans is reducible to the functioning of their individual parts. Current microbiome research suggests we have something like an ecosystem in our digestive tracts – a system which we depend on for health, but which isn’t (obviously) reducible to the individual bacteria that it contains. This claim will clearly need a bit of modification, however, since you can function abnormally by missing a part. We’ll return to the issue of what is meant by a part or process making a lower contribution to survival and reproduction. There’s some lack of clarity in the various presentations of Boorse’s account over whether we should read the claim about goals as a disjunction (“survival or reproduction”) or a conjunction (“survival and

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sense that its contribution to the organism’s survival and reproduction falls below the species-typical norm. Boorse emphasizes that the goals of survival and reproduction are to be understood in evolutionary terms – they are the “goals” of an organism trying to pass on its DNA. So, the physical organism that is your body can be said to have the goal of reproduction, according to Boorse, even if you spend a lot of effort trying to avoid reproduction. States that interfere with this goal count as pathological in Boorse’s sense even if they are desired and acquired by medical intervention (e.g., tubal ligation or vasectomy). And what matters for an evaluation of health or pathology is an organism’s ability to meet these goals, which might come apart from whether the goals are actually attained. So, for example, you don’t count as diseased if you simply remain celibate and never reproduce; in such a scenario, you could still have the ability to reproduce, and ability to reproduce – rather than actual reproduction – is what matters to a normal function analysis. To put it succinctly, for Boorse, health is the absence of pathology. Pathology is a negative departure from normal function. And negative departures from normal function are departures from species, age, and sex-typical function that reduce the ability to survive and/or reproduce. There are, of course, many well-rehearsed objections to this view. Some object to the very idea that organisms can be said to have “functional goals” as Boorse describes them – at least in any sense that’s naturalistic.13 Others worry that the account, as stated, can’t give a workable definition of pathology, even if we grant that the idea of “normal function” is naturalistically plausible. One serious problem, for example, is the presence of common pathology – especially given that Boorse’s analysis must incorporate statistical normalcy for reference classes matched for both age and sex.14 This creates problems when we consider health conditions that are incredibly common in aging populations. Almost half of adults age sixty-five or older, for example, have been diagnosed with osteoarthritis, and a substantial percentage of adults over forty have been diagnosed as well.15 Given that statistical

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reproduction”). The conjunctive reading has been objected to, since ostensibly some things which enhance your chances at reproducing might limit your chances at surviving. In light of this, Boorse explicitly revises to the disjunctive reading. See Boorse, A Second Rebuttal on Health, supra note 1. But the disjunctive reading is arguably too expansive. For example, there are many things that might detract from an organism’s ability to reproduce that aren’t pathological (same-sex attraction, preference for nonpenetrative sex, and so on). See Elliot Sober, The Nature of Selection (1984). See also Ron Amundson, Against Normal Function, 31 Studies in Hist. & Phil. of Sci. Part C: Studies in Hist. & Phil. of Biological & Biomedical Sci. 33 (2000). See, for example, Rachel Cooper, Disease, 33 Studies in Hist. & Phil. of Sci. Part C: Studies in Hist. & Phil. of Biological & Biomedical Sci. 263 (2002); Peter H. Schwartz, Defining Dysfunction: Natural Selection, Design, and Drawing a Line, 74 Phil. of Sci. 364 (2007) (for discussion). And some studies suggest that doctor-diagnosed arthritis substantially underestimates the frequency of painful and limiting arthritis. Arthritis Foundation, Arthritis by the Numbers: Book of Trusted Facts & Figures (2018), available at www.arthritis.org/Documents/Sections/About-Arthritis/arthritis-facts-statsfigures.pdf.

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atypicality for comparison classes matched for age and sex is a necessary condition for pathology, it doesn’t look like Boorse’s model can consider arthritis in older adults pathology, even though it’s a significant health problem.16 In what follows, however, I want to present a different angle of criticism to normal function accounts. By specifically focusing on cases of disability, I’m going to argue that the normal function account can’t adequately describe a notion of “ability” – as it pertains to the ability to survive and reproduce – that is sufficient to ground a theory of pathology. II. THE BASIC PROBLEM

Looking at normal function accounts through the lens of disability highlights a unique problem for such accounts – one which has received very little discussion amid all the wide-ranging debates over normal function and health. Defenders of normal function-based views – including Boorse, Wakefield, and Hausman – take disabilities as paradigm cases of negative departures from normal function. And yet, to state the obvious, there are many, many disabilities which do not, in a modern industrialized context, prevent the individuals that have them from having children or living a normal lifespan. Disabilities such as these allow us to press specifically on what is meant by ability in the context of normal function accounts of health. Let’s begin with Boorse’s view. Boorse insists that it is the actual, current contribution to survival and reproduction that matters when assessing function.17 This is, he thinks, essential to the medical understanding of pathology, and it is the medical understanding of pathology (and, correspondingly, health) which he takes himself to be theorizing. Now consider deafness as an example. Deafness is something Boorse wants to count as a paradigm example of negative departure from normal function – that is, a statistically atypical type of functioning which impedes a person’s ability to survive and reproduce. To make clear what should be obvious, however, Deaf people can live perfectly long lives and can have children without difficulty. (That is, deafness does not by itself affect life expectancy and doesn’t have any impact on fertility.18) So how are we to understand the claim that deafness 16

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What’s more, it doesn’t look like a viable option for Boorse to simply say that common health problems like arthritis are not really pathology, since he adamantly maintains that the “target concept” of his analysis is the understanding of pathology employed in medical practice, and medical practice certainly understands arthritis and other common ailments as pathology. Boorse discusses the possibility of making age-comparison classes less fine-grained, and so having “adult” simply be the comparison class – but grants that this removes the possibility of distinguishing normal aging (including menopause, graying hair, etc.) from age-related pathology such as arthritis. See Boorse, A Second Rebuttal on Health, supra note 1. He’s not, for example, considering the contribution to survival and reproduction traits may have made when they were selected and passed on during an evolutionary process that occurred millions of years ago. There is correlation between deafness and lower life expectancy in some populations, but these correlations appear to be mitigated by two factors: the cause of deafness and its socioeconomic impact. So, for example, infectious disease is a major cause of deafness internationally, but in these cases it is

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negatively impacts the ability to survive and reproduce, given these basic facts about deafness? Call this the “counterfactual problem.” I’m going to assume that proponents of normal function accounts are aware that deafness – alongside many other disabilities – doesn’t detract from lifespan or fertility, at least in a modern industrialized context. We are left with the puzzling question of how to understand the contention that, on a normal function account, disabilities like deafness are paradigm instances of pathology. Clearly, deafness does not actually interfere with survival or reproduction for many Deaf people. So, there must be a substantial amount built into “ability.” For the account to deliver the intended results, the thought must be that something like deafness can have a negative impact on an individual’s ability to survive and reproduce without actually shortening their lifespan or preventing reproduction. This is an odd reading of ability, to be sure, but let’s see if we can make sense of it. III. FUNCTIONAL EFFICIENCY

It’s true, of course, that, in cases of deafness a person’s auditory system does not function in a way that’s statistically typical. Perhaps the basic thought is that, although their overall survival and reproductive abilities are not statistically atypical, their auditory system’s contribution to those abilities is. As Boorse says, the “normal function of a part or process within members of the reference class is a statistically typical contribution by it to their individual survival [or] reproduction.”19 By focusing on the contribution to survival and reproduction of a particular part or process, perhaps we can understand deafness as pathology in terms of the abnormal function of that part or process (the auditory system or the process of hearing), without needing to appeal to an actual reduction in lifespan or fertility. But this strategy alone is insufficient. Recall that for something to be pathological, it can’t merely be atypical. There might be lots of ways in which a person’s hearing could atypically contribute to their overall function without being pathological in Boorse’s sense – including by being especially sensitive or acute. This is precisely why normal function accounts define pathological function – as opposed to merely abnormal function – as something which detracts from survival and reproduction. So even if deafness means that a part or process makes an atypical contribution to an organ’s overall function, it doesn’t follow – by the standards of Boorse’s own model –

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the infectious diseases and not the deafness that are causing shorter life expectancy. Similarly, deafness is often associated with poverty, and poverty is frequently associated with lower life expectancy, but again it seems that it is the health impact of poverty, and not deafness, that causes the reduction in life expectancy. A major UK study comparing Deaf and hearing populations found that Deaf people often have poorer health outcomes, but for health factors such as blood pressure and diabetes, which are medically unrelated to deafness. They did not find evidence of variation in life expectancy. See Emond, Alan et al., The Current Health of the Signing Deaf Community in the UK Compared with the General Population: A Cross-Sectional Study, 5 BMJ Open e006668 (2015). Boorse, A Second Rebuttal on Health, supra note 1, at 684.

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that it’s pathological. For that, we need to be able to say that there’s some way in which deafness detracts from the individual’s ability to survive or reproduce. Here both Boorse20 and, especially, Hausman21 put a great deal of emphasis on the idea of “functional efficiency.” Individual parts and processes have functional goals, which they can accomplish more or less efficiently; if a part or process falls below the species-typical norm for achieving its end goal, it is pathological.22 We can then say that deafness is pathological because the functional goal of the auditory system is hearing, and Deaf people function less efficiently with respect to that process, regardless of their overall lifespan or fertility. But this is too quick. The human species is full of examples of “normal anatomical variation” – missing muscles, extra muscles, extra nerve branches, extra bone, etc. – which cause body parts to function somewhat differently but are not considered pathology.23 Likewise, a process in the human body can be abnormal without being pathological – variation in the length or regularity of the menstrual cycle, for example, is a relatively common abnormality in women and is not by itself pathology.24 And humans can function far below the typical level of functional efficiency for a particular part or process without thereby being considered to have pathology. The most straightforward example of this is missing anatomy. The palmaris longis tendon in the wrist is completely absent in a significant subset of people, and obviously for these people that part does not function at typical efficiency or meet its functional goals (movement of the wrist). But absence of the palmaris longis is considered a normal anatomical variant and is not pathological.25 Cases like these are precisely what push Boorse toward the emphasis on overall goals of survival and reproduction. In characterizing pathology, we need 20 21

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See generally id. See Hausman, Health, Naturalism, and Functional Efficiency, supra note 1; Hausman, Health and Functional Efficiency, supra note 1. Boorse uses the example of the heart’s pumping blood versus the sound it makes when doing so. If a heart pumps blood at a lower rate than is normal for the species, then it is pathological, because pumping blood is the functional goal of the heart; but if it pumps blood a bit more quietly than is normal that is not pathology, because the sound a heart makes when beating is not its functional goal – the sound a heart makes plays no role in the organism’s survival and reproduction. See Boorse, A Second Rebuttal on Health, supra note 1. See, for example, Ralf Tunn et al., Anatomic Variations in the Levator Ani Muscle, Endopelvic Fascia, and Urethra in Nulliparas Evaluated by Magnetic Resonance Imaging, 188 Am. J of Obstetrics & Gynecology 116 (2003); Richard Bergland et al., Anatomical Variations in the Pituitary Gland and Adjacent Structures in 225 Human Autopsy Cases, 28 J. of Neurosurgery 93 (1968). Note that if we consider the function of menstruation to be the shedding of the uterine lining, then an unusually long menstrual cycle would be subnormal function (although clearly not pathology in anything like the medical sense of the term). Yet a longer menstrual cycle can be advantageous in other ways, given that the woman loses blood less often. Functional efficiency is hard to objectively quantify here. Kirstine Mu¨nster, Lone Schmidt, & Peter Helm, Length and Variation in the Menstrual Cycle: A Cross-Sectional Study from a Danish Count, 99 BJOG: An Int’l J. of Obstetrics & Gynecology 422 (1992). See, for example, N. W. Thompson et al., Absence of the Palmaris Longus Muscle: A Population Study, 70 Ulster Med. J. 22 (2001).

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a way to define “subnormal” function for parts and processes that goes beyond statistical atypicality, less than typical function, and so on. And for this reason, Boorse maintains that subnormal function should be understood in terms of contribution to survival and reproduction – a part or process has diminished functional efficiency if it reduces (compared to the species norm) the organism’s ability to survive and reproduce. This lands us right back at our original problem. I am not, of course, disputing that Deaf people hear less efficiently than hearing people do. What I’m skeptical of – and what I’m arguing against – is the idea that this can be explicated in the terms that the normal function account specifies. Before proceeding on that point, however, it’s worth pausing to consider whether comparisons of functional efficiency can characterize pathology – contributions to survival and reproduction aside. Hip dysplasia is considered pathology, for example, but it’s also overrepresented among dancers, most likely because it allows for increased range of motion.26 So let’s consider a comparison of two hips: one in an elite dancer with hip dysplasia, one in a completely ordinary, not especially fit office worker. The dancer has greater strength, range of motion, proprioception, and movement control, but she also has some chronic hip pain and a greater risk of developing hip arthritis as she ages. The office worker has a normal hip – she can’t do most of the things the dancer can do, but she also doesn’t have the pain or higher risk of arthritis. Whose hip has more functional efficiency? Crucially, for defenders of the normal function view, this question is about the individuals (and the individual hips), not about population averages. That is, it’s not a question about how hip dysplasia typically affects the efficiency of human hip joints, but rather it’s a question about how it affects these particular hip joints. And that’s because health, as defined by normal function accounts, is had by individuals, and is a matter of the functioning of individuals. This caveat is an important one, since there are features which in general are considered harmful or pathological, but which may not be pathological at all in a particular individual. Bradycardia (unusually slow heart rate), for example, is often a serious form of arrhythmia, but it can also be a harmless side effect of intense cardiovascular training in elite athletes.27 Similarly, there are things which can, overall, be healthy for populations but which are pathological in individuals,28 and 26

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See Robert Turner, Eilish O’Sullivan, & Jaime Edelstein, Hip Dysplasia and the Performing Arts: Is There a Correlation, 5 Current Rev. Musculoskeletal Med. 39 (2012). See Ricardo Stein et al., Intrinsic Sinus and Atrioventricular Node Electrophysiologic Adaptations in Endurance Athletes, 39 J. Am. C. Cardiology 1033–38 (2002). The most famous case of this is sickle cell anemia in populations where malaria is prevalent. Those who are homozygous carriers of the gene have sickle cell disease, while those who are heterozygous do not – but being a heterozygous carrier provides substantial protective effects from malaria. So while the presence of the gene can be harmful to individuals, it can also be healthy for populations. See Michael Aidoo et al., Protective Effects of the Sickle Cell Gene Against Malaria Morbidity and Mortality, 359 Lancet 1311 (2002).

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likewise things which are bad for populations but not health problems for individuals.29 So, we can’t simply say that the dancer’s hip is less efficient because dysplasia typically leads to less efficiency. What can we say? She can do many things better than a normal individual but, with respect to some factors, her hip is worse. The question of whether her hip is more or less efficient than normal doesn’t have a clear answer. And even if, on balance, her hip was judged to be more efficient, that wouldn’t mean that her dysplasia is not pathological. Similarly, we face significant conundrums in comparing functional efficiency with conditions like joint hypermobility, which fall along a wide spectrum. At the extreme end, joint hypermobility is associated with genetic collagen disorders, such as Marfan syndrome or Ehlers-Danlos syndrome, and can cause serious health problems. But joint hypermobility can also be a common variation (more common in some ethnic groups than others) that is frequently found in athletes for whom flexibility is an asset (dancers, gymnasts, swimmers, etc.), as well as other types of performing artists.30 How do we think about functional efficiency in such cases? Joint hypermobility is often asymptomatic and can be advantageous, but it also increases the risk of certain injuries – a hypermobile joint is inherently more mobile, but less stable. Consider a strikingly hypermobile athlete, such as Michael Phelps. Part of his ability to swim a stroke like butterfly as quickly as he can is due to the tremendous range of motion in his shoulders; that same range of motion makes him more prone to shoulder dislocations and shoulder instability. Are Michael Phelps’ shoulders more or less functionally efficient than the normal range? Again, it’s not obvious there’s a good – and even less obvious there’s a naturalistic – answer to this question. IV. DISPOSITIONS AND COUNTERFACTUALS

Let’s return now to the question of how a normal function view can make sense of the idea that something like deafness reduces the ability to survive and reproduce. Perhaps the thought is that “ability” here expresses something dispositional. Indeed, Boorse suggests this explicitly in his discussion of Kingma’s criticisms.31 Consider the disposition of fragility – fragile things are more disposed to break, and that’s true whether or not they ever do break. And something can make an object more fragile without breaking it. So, perhaps ability, for the normal function account, is likewise dispositional, and something can detract from your ability to 29

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A substantial overpopulation of males relative to females, for example, is bad for a population without maleness being pathological for any particular male. See Peter H. Beighton, Rodney Grahame & Howard Bird, Hypermobility of Joints (2011). See Boorse, A Second Rebuttal on Health, supra note 1; Elselijn Kingma, Paracetamol, Poison, and Polio: Why Boorse’s Account of Function Fails to Distinguish Health and Disease, 61 British J. Phil. Sci. 241 (2010).

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survive and reproduce without actually making you live a shorter lifespan or have fewer children. We’d have to say something more specific than just that ability is dispositional, however, to make the case that things like deafness really do detract from the ability to survive and reproduce. A particular fragile thing may not ever break – that is, its disposition to break may never manifest – but in general fragile things break more often than nonfragile things. If we had a class of objects which didn’t break often or easily, we’d have no reason to suppose that such objects are fragile.32 And the point I’m belaboring here is that, in our contemporary social context, Deaf people – alongside countless other disabled people – simply don’t die earlier than the average person and can have children without problems. So what reason would we have for thinking that, in a modern Western social context, such people have a reduced dispositional ability to survive and reproduce? Consequently, I think that the most plausible reading of the “ability to survive and reproduce” clause is counterfactual. The thought would then be something like this: yes, Deaf people (at least in modern Western contexts) don’t actually die earlier or have more trouble reproducing, but their ability to survive and reproduce is still reduced because they are more vulnerable to a change in circumstances. Had circumstances been slightly different – had they faced different obstacles or impediments – Deaf people would be less likely to survive and reproduce than hearing people. And it’s in this sense that their ability to survive and reproduce is reduced. It’s of course true that Deaf people can face vulnerabilities and threats to their survival that hearing people don’t. Sound can often serve as a warning of approaching danger, and so lack of auditory access to sound can create specific vulnerabilities. On the other hand, your average Deaf person is also probably at an advantage, compared to your average hearing person, in many potentially dangerous situations. For example, Deaf people often have the habit of visually scanning their environment in a way that your average hearing person does not. And that habit, especially when developed over a lifetime, can be a distinct advantage in some situations. Deaf people would likely also be at an advantage in dangerous situations where there is very loud, blaring, or distracting noise. And so merely establishing that Deaf people face counterfactual vulnerabilities is insufficient. What the normal function account would need to establish for a counterfactual account to succeed is that Deaf people are more vulnerable in either a wider or a more salient range of nonactual (but in some sense “normal”) situations than hearing people. It looks very difficult, however, to give a specific and principled account of which counterfactual situations are relevant. After all, there are lots of things that might’ve killed each of us but didn’t. Which nonactual worlds are closer or more salient in evaluating claims like “the Deaf person could have died more easily than the hearing person” for two people who both lived normal lifespans 32

Setting aside, for the moment, complex issues of masked or finkish dispositions.

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is at best a complicated question. Nor is it obviously a question we can answer naturalistically, given how much our interests and the conversational context constrain which counterfactual scenarios are salient. V. HAUSMAN ON BENCHMARK ENVIRONMENTS

Worries about the inherent nonnaturalism of counterfactual salience aside, what we need is a principled way of specifying which particular nonactual circumstances are salient. Daniel Hausman suggests that we can do this via an appeal to “benchmark” environments.33 Whether a feature is disadvantageous will depend on the environment: pale skin, for example, is advantageous in climates with very little direct sun but disadvantageous in climates with lots of direct sun and high levels of UV exposure.34 According to Hausman: The determination of what is pathological full-stop, rather than pathological within a specified environment, requires that one specify a “benchmark” environment. A benchmark environment will be typical of the most common environments in which Homo sapiens have lived. Only statistically normal functioning in benchmark environments defines health.35

Hausman suggests that the idea of benchmark environments can be used to address the counterfactual problem, but I am skeptical that this is the case. Consider his own example of skin color. If we consider what is typical of the “most common environments in which Homo sapiens have lived” across the entire history of the species, then the most common by far will be those with large amounts of direct sunlight and relatively high levels of UV exposure.36 Skin with darker pigmentation is advantageous in these contexts, while pale skin is disadvantageous. Very pale (e.g., white) skin is also statistically atypical for the human species. So, if we’re judging based on function in benchmark environments, pale skin is pathological.37 Or consider common health conditions which are direct responses to a person’s environment. Allergy to penicillin can be a serious health condition, requiring substantial lifestyle modification and medical care. Yet the most common environments across the history of our species do not contain penicillin. And a person with a penicillin allergy would function normally in the most common environments in 33

34 35 36 37

See Hausman, Health, Naturalism, and Functional Efficiency, supra note 1; Daniel M. Hausman, Valuing Health: Well-Being, Freedom, and Suffering (2015) [hereinafter “Hausman, Valuing Health: Well-Being, Freedom, and Suffering”]. Hausman, Valuing Health: Well-Being, Freedom, and Suffering, supra note 32, at 10. Id. at 11. Id. The idea that whiteness is, quite literally, a disease is perhaps worth considering. But for views that are attempting to roughly track the medical and epidemiological concept of pathology, such a result seems unacceptable.

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which Homo sapiens have lived. Nevertheless, it seems incorrect to say penicillin allergy is not pathology. Appeal to benchmark environments doesn’t dissolve the problems of comparing functional efficiency. What about the dancer with hip dysplasia? Which is more advantageous in benchmark environments, flexibility or the absence of pain? There’s probably no good way to answer that question (and almost certainly no good way to answer it naturalistically). Moreover, it’s not clear why the answer would be relevant to whether the dancer’s hip dysplasia is pathological. VI. WAKEFIELD ON NATURAL SELECTION

An alternative way of approaching the counterfactual problem is by specifying a particular counterfactual scenario that is especially salient to human functioning. Jerome Wakefield argues, contra Boorse, that it is not the actual, current contribution to survival and reproduction that matters in assessing normal function (and pathology), but rather the contribution of a part or process to our species’ evolutionary past.38 Wakefield defines natural function of an organ or mechanism as “an effect of the organ or mechanism that enters into an explanation of the existence, structure, or activity of the organ or mechanism.”39 He then argues that dysfunction is the “failure of a mechanism to perform a natural function,” and stipulates that dysfunction is a necessary condition for pathology.40 His approach thus offers a departure from Boorse and Hausman by emphasizing the role that function played in the process of natural selection, rather than the role it plays currently. It’s worth noting that Wakefield’s specific definitions of (natural) function and dysfunction do not work. For example, a common effect of the female menstrual cycle is iron deficiency (and iron deficiency anemia). This effect is part of the explanation for the activity of this particular mechanism – in particular, for why menstruation will typically cease if a woman is under extreme physical stress, has become very thin or malnourished, etc.41 Likewise, degenerative joint disease in the 38

39

40 41

See Wakefield, Disorder as Harmful Dysfunction, supra note 2. See also Jerome C. Wakefield, Dysfunction as a Value-Free Concept: A Reply to Sadler and Agich, 2 Phil. Psychiatry & Psychol. 233 (1995); Wakefield, The Biostatistical Theory Versus the Harmful Dysfunction Analysis, supra note 2. In arguing against this answer to the counterfactual problem for normal function accounts of pathology, I’m taking no view as to whether it’s a good account of biological functions more generally. See, for example, Ruth Garrett Millikan, In Defense of Proper Functions, 56 Phil. of Sci. 288 (1989). See also Karen Neander, Functions as Selected Effects: The Conceptual Analyst’s Defense, 58 Phil. of Sci. 168 (1991) (for defenses of a natural selection-based approach to biological function). My claim here is simply that if a beneficial role in natural selection is what determines normal function, then normal function can’t adequately explain pathology. Jerome C. Wakefield, The Concept of Mental Disorder: Diagnostic Implications of the Harmful Dysfunction analysis, 6 World Psychiatry 149, 152 (2007). Id. at 236. See, for example, M. P. Warren, Effects of Undernutrition on Reproductive Function in the Human, 4 Endocrine Rev. 363 (1983); B. J. Cohen & Y. Gibor, Anemia and Menstrual Blood Loss, 35 Obstetrical & Gynecological Surv. 597 (1980).

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hips and knees is a common effect of bipedal locomotion. And that particular effect of that particular activity is hypothesized as part of the explanation for the structure of both joints.42 In both cases, we have effects of an organ or mechanism which played a direct (causal) explanation in the existence, structure, or activity of the organ or mechanism. And yet it would be absurd to label either a natural function, or their absence a dysfunction.43 So, let’s set Wakefield’s preferred definitions of function and dysfunction aside and focus instead on the counterfactual scenario that Wakefield argues is especially salient – our hunter-gatherer evolutionary past. Perhaps the best way of interpreting “ability to survive and reproduce” is with respect to this specific context – a function is subnormal (and hence pathological) if it is species-atypical and would have interfered directly with survival and reproduction in a prehistoric hunter-gatherer context.44 The idea is that we should evaluate function in terms of ability to survive and reproduce in a “state of nature” style scenario. The Deaf person, the amputee, the wheelchair user, the person with rheumatoid arthritis – they all might live perfectly long lives with plenty of reproductive options in a modern Western context, but drop them in the middle of the jungle and they will have a harder time running from tigers and foraging for food, or something along those lines. This often seems to be the counterfactual sense implicitly intended by the claim that such conditions limit the ability to survive and reproduce – when in actual, present contexts they clearly don’t – and it’s a way of motivating a counterfactual reading that specifies (to some extent) what the relevant counterfactual scenarios are. Suppose we grant, for the sake of argument, that in a state of nature scenario deafness were an impediment to survival and reproduction. The problem is that this state of nature counterfactual scenario – one in which we’re imagining escaping predators and living a hunter-gatherer lifestyle in a harsh environment – can’t give us a proxy for determining what counts as pathology in our modern context. Plenty of things might have been advantageous in that context which are disadvantageous in our context, and vice versa.45 More strongly, plenty of things which were benefits in that context might rightly be considered health problems in our context. There’s 42

43

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45

This includes, for example, structural attempts to balance mobility with stability and widen weightbearing surfaces. See, for example, Leslie Aiello & Christopher Dean, An Introduction to Human Evolutionary Anatomy (1990). Similar points can be made for related accounts of function that have sometimes been incorporated in accounts of health. See, for example, Larry Wright, Functions, 82 Phil. Rev. 139 (1973). See also Cooper, supra note 13(for discussion). Boorse himself explicitly disavows this reading – he states that it is the actual, present effects on function (understood in terms of survival and reproduction) that matter. Boorse, A Second Rebuttal on Health, supra note 1, at 687. Indeed, there’s a vast literature on the interplay between evolutionary biology and health that attempts to argue that many modern health problems are caused by a mismatch between traits which were favored by natural selection in a hunter-gatherer context and a modern context in which those traits are harmful. We might rightly be skeptical of some of this literature, but it at least makes a compelling

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some evidence, for example, that insulin resistance (which is a precipitating factor for type 2 diabetes in the modern Western context) may have been beneficial in some hunter-gatherer contexts.46 Likewise, some researchers have hypothesized that ADHD and similar disorders, although they can be highly disadvantageous in a modern context, might have in fact been advantageous adaptations in a huntergatherer context in which we need to continually scan for predators, forage for food, etc.47 VII. SUMMARY AND CONCLUSION

Having surveyed a range of salient options, it’s very hard to see a reading of “ability to survive and reproduce” that can both count things like deafness as detracting from these abilities and serve as an adequate basis for a naturalistic theory of pathology. Thus, it’s very hard to see how deafness counts as pathology in Boorse’s sense. When focused on deafness specifically, perhaps the upshot of this point is limited. Many disabled people would argue that deafness isn’t pathology – it isn’t a health issue at all. In this view, regardless of his own reactions to the case, it’s not a problem for Boorse’s account of health if it doesn’t classify deafness as pathology. And perhaps this is the right thing to say about deafness. But things get more complicated for disabilities which quite clearly have substantial impacts on health, but which don’t (again, in the modern context) detract from survival or reproduction. Consider, for example, the experience of people with a wide range of orthopedic disabilities – limb loss, avascular necrosis, coxa vara, complex limb-length discrepancies, and so on. People with such conditions will certainly function “abnormally” in some sense, and their social experience will often be one of marked disability. And yet they typically have normal life expectancy and reproductive capacity. In some cases, through pursuit of adaptive sports, cross-training, etc. they can achieve very high levels of various types of functioning.48 Nevertheless, these kinds of orthopedic conditions can and do have a profound impact on health, even in contexts in which a person can live a thriving life with them. People with such conditions often see doctors on a regular basis, they’ll probably undergo numerous medical interventions, they’ll often employ braces, mobility aids, or other assistive devices, they’ll perhaps need ongoing physical therapy, and so on. The simple point here is that disabled people can and do lead long lives that include children, but

46

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case that state of nature scenarios aren’t a particularly good basis for defining modern pathology. See Jared Diamond, The Double Puzzle of Diabetes, 423 Nature 599 (2003) (for discussion). One might also hypothesize that many of the behavioral traits common to academics – absentmindedness, predilection for abstract thought, clumsiness, etc. – would lead to early death in the state of nature, perhaps far more quickly than deafness would. Sadly, we have no research on this point. See, for example, Peter S. Jensen et al., Evolution and Revolution in Child Psychiatry: ADHD as a Disorder of Adaptation, 36 J. Am. Acad. Child & Adolescent Psychiatry 1672 (1997). Compare, for example, the amputee rock climber to the average sedentary office worker – who has more functional efficiency?

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which also include significant health issues. It’s simply not clear how standard normal function accounts can accommodate both these observations. In his discussion of Boorse’s view, Ron Amundson points out that it cannot adequately distinguish between level of functioning and mode of functioning.49 In many cases of disability, people function perfectly well – at least as far as we can measure function via the benchmarks of survival and reproduction – although they do so in atypical ways. Amundson uses this as a criticism of the wider idea of normal function, and I’m sympathetic to that criticism. Here, though, my point is narrower: a Boorsian approach cannot adequately characterize the reality of medical pathology for many disabled people, who function perfectly well in a modern industrialized context, even though they do not function typically. And this is important, because in many cases of disability we need a way to explain both that people with such disabilities function well and that such disabilities involve substantial health issues. That is, the relationship between disability and health is complicated, and many physical traits which can be part of a long and flourishing disabled life are, nevertheless, well-characterized as pathology in a biomedical setting. This point, it should be emphasized, is not limited to disability. Many instances of pathology do not actually shorten lifespans or prevent reproduction in a modern industrialized context – allergies, digestive disorders, osteoarthritis, nearsightedness, tendinopathy, etc. The interesting thing about disabilities like deafness is simply that they both fail to shorten lifespans or prevent reproduction and are considered paradigm cases of pathology by defenders of normal function theories of health. This is the root of what I have called the “counterfactual problem” for those theories. And if I’m right about that problem, standard normal functional analyses can’t give us an extensionally adequate theory of health and pathology.

49

See Amundson, supra note 12.

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2 Healthcare As Eugenics Ani B. Satz

In his classic work Just Healthcare,1 Norman Daniels speaks about the role of healthcare institutions in supporting fair equality of opportunity:2 such institutions seek to prevent, restore, and compensate for loss of “normal species functioning.”3 Daniels understands “normal species functioning” as functioning without disease.4 He assumes that individuals whose normal functioning cannot be restored are outside the normal opportunity range and have severe physical or mental disabilities.5 Healthcare institutions that provide supportive care to these individuals fall outside the bounds of justice.6 Daniels’ ideas about health and disease, health institutions, and the role of medicine are reflected in modern healthcare delivery and funding. The practice of medicine and health insurance embrace a model of health and disease where disability is viewed as something to be cured. This is the case whether disability is caused by debilitating illness or other circumstances. Further, modern healthcare institutions (providers and payors) embrace methods of functioning that are typical rather than atypical. Typical or normal methods of functioning (such as walking) are valued over other forms of functioning (such as wheeling), often regardless of comparative effectiveness. These institutions assume that atypical functioning is undesired, less effective, and to be avoided. Only when a patient lacks the capability for typical functioning is atypical functioning supported. The preference for normal methods of functioning and avoiding disability is so deeply entrenched in healthcare that health insurance often covers normalizing services, like spinal surgery, but not supports for atypical functioning, such as power chairs. This chapter argues that the way in which healthcare currently is practiced and funded is a form of negative eugenics, that is, preventing people who function in 1 2

3 4 5 6

Norman Daniels, Just Healthcare (1985). Daniels conditionally extends John Rawls’ fair equality of opportunity principle to healthcare on the basis that healthcare is a special good that directly affects opportunity. Id. at 41. Id. at 48. Id. at 34–35. Id. at 48. Id.

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certain ways from existing. This is because healthcare seeks to prevent, ameliorate, or eliminate disability, with the goal of normalizing individuals. Healthcare delivery and funding privilege and promote typical methods of human functioning over equally or more effective atypical methods of functioning, thereby promoting certain human traits. Because the government extensively funds healthcare, it at least tacitly supports these choices.7 The eugenic approach to healthcare raises several concerns. It seems to be largely an unreflective or default choice in health policy. This alone raises moral issues, given the enormous impact such an approach has on the lives of individuals with disabilities. At the extreme end, individuals with disabilities may not be born. Other individuals may receive ineffective normalizing healthcare services. The eugenic approach also raises concerns as a matter of health policy, since avoiding disability does not necessarily equate with an improved health status. And, relatedly, supporting a disability need not indicate a reduced health status; that is, for individuals with disabilities, functioning atypically may be effective, or achieve functional outcomes. Nonetheless, under current health insurance structures, individuals with disabilities may not have healthcare coverage for services or medical equipment that would allow them to function more effectively in atypical ways. As a result, they may undergo painful and unnecessary surgeries and other medical procedures to try to restore typical functioning. Further, the normalizing approach to healthcare sends a negative message about disability, namely that the lives of individuals with disabilities are not as valuable as the lives of individuals who function typically. This latter viewpoint is illustrated starkly during public health emergencies, when individuals with disabilities are deprioritized in the rationing of medical services and equipment because their functioning after the service at stake would be atypical and “lower” than that of an otherwise normally functioning individual. To remedy such inequitable treatment, society must assess current approaches to providing and funding medicine and make a deliberate rather than a default choice about whether current legal and social structures supporting this normalizing approach are to remain in place. This chapter is divided into the following sections. Section I interrogates the concept of “eugenics” in the disability context, providing the foundation for viewing healthcare delivery and funding as eugenic. Sections II and III argue that medical school training, basic healthcare, health insurance, and healthcare distribution models seek to normalize functioning and prevent disability, rather than to promote 7

The government estimates direct spending at 28.3 percent or $3.3 trillion in 2016. NHE Fact Sheet, Centers for Medicare & Medicaid Services (March 25, 2018), www.cms.gov/research-statistics-data-andsystems/statistics-trends-and-reports/nationalhealthexpenddata/nhe-fact-sheet.html. But see David U. Himmelstein & Steffie Woolhandler, The Current and Projected Taxpayer Shares of US Health Costs, Am. J. Pub. Health (February 17, 2016), http://ajph.aphapublications.org/doi/full/10.2105/AJPH .2015.302997 (finding that government spending was at 64.3 percent of national expenditures in 2013 and is expected to rise to 67.1 percent in 2024, including direct spending on government health programs as well as tax subsidies).

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functional outcomes, and are therefore eugenic. Section IV argues that one may choose disability while simultaneously promoting or even maximizing functional outcomes. This section offers insights into how the “detrimental difference” model of disability in bioethics is based on the false premise that supporting human functioning requires avoiding disability. Section V concludes, discussing the implications of my thesis for the enhancement of capabilities, whereby promoting human functionality environmentally or through high technology healthcare may facilitate effective atypical functioning for individuals with disabilities. I. DISABILITY AND EUGENICS

Before proceeding, it is necessary to have working concepts of “disability” and “eugenics,” and to situate them in the context of healthcare. Disability is, in the most basic sense, an impairment to functioning. Definitions of disability range from any variation in human functioning (that is, disability is nearly universal)8 to complete impairment.9 Definitions assume to varying degrees that the origins of disability are social, biological, or a combination. If disability has a strong social component, speaking only of biological capabilities neglects environmental circumstances that may reduce functioning and vice versa. A working concept of disability is necessary to define a “normal” level of functioning. This disability threshold is significant because it may determine when medical intervention is appropriate under the biological model of disability, legal disability protections begin, and individuals are eligible for public health insurance, wage, or other benefits based on disability. The threshold standard may vary according to context. In healthcare, medical standards for normality are strictly biological and determined with reference to species-typical functioning – that is, functioning as most people do. Under the Americans with Disabilities Act (ADA), disability is premised on a mixed biological-social definition (often referred to as a “functional” definition), requiring an individual to have a substantial impairment of a major life activity.10 Whereas eligibility for Medicaid and Medicare through Social Security programs requires a disability under a mixed biological-social definition that results in total, permanent impairment preventing “substantial and gainful activity.”11 8

9

10

11

See Leonard J. Davis, Bending Over Backwards: Disability, Dismodernism and Other Difficult Positions (2002). Social Security Administration, 2017 Red Book 5 (“To meet our definition of disability, you must not be able to engage in any substantial gainful activity (SGA) because of a medically-determinable physical or mental impairment(s): That is expected to result in death, or that has lasted or is expected to last for a continuous period of at least 12 months.”) Americans with Disabilities Act of 1990 §3, 42 U.S.C. § 12102(1) (2018) (as amended) (“‘disability’ means, with respect to an individual: (A) a physical or mental impairment that substantially limits one or more major life activities of such individual; (B) a record of such an impairment; or (C) being regarded as having such an impairment”). Social Security Administration, supra note 9, at 5.

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For the purposes of this chapter, “disability” is given a mixed biological-social definition, like the one adopted by the ADA. This definition recognizes biological impairment to functioning based on current accepted medical thresholds, as well as environmental influences on functioning. Eugenics focuses on only the biological aspect of the functional definition. Under a eugenic approach, certain characteristics, attributes, or features – including different methods of functioning – may be depreciated, even if they would not result in impairment to functioning in (more) supportive environments. This devaluation may motivate medical intervention to normalize methods of functioning, even when social adaptation would achieve the same functional result.12

..... Sir Francis Galton first used the term “eugenics” in 1883 to describe his self-initiated movement for “improving human stock” through increased reproduction of genetically fit families (positive eugenics) and decreased reproduction of genetically unfit families (negative eugenics).13 Fitness was determined by certain kinds of characteristics including biological functioning14 and race, as well as behaviors such as drunkenness, licentiousness, joblessness, and criminality.15 Early eugenic practices occurred at both the individual and population levels.16 They were state-imposed, and thereby coercive, and involved involuntary sterilization.17 Individuals facing sterilization included those with epilepsy, cognitive impairments, and other disabilities.18 In contrast, modern eugenic practices are based on individual or familial decisions. Healthcare may be viewed as eugenic based on several factors shared among traditional and modern eugenics approaches: • Healthcare delivery and funding value and promote certain human traits over others, influencing the people who comprise a given community. This may take the form of preventing (negative eugenics) or facilitating (positive eugenics) community composition. • Medical practice seeks to prevent, ameliorate, or eliminate disability, with the goal of normalizing human functioning. • Normalizing practices may occur with individuals or within families or other groups. 12

13 14

15 16

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18

For this reason, some eugenicists viewed medicine as frustrating natural selection. Allen Buchanan et al., From Chance to Choice: Genetics and Justice 32 (2001) (discussing August Weismann). Daniel Wikler, Can We Learn from Eugenics?, 25 J. Med. Ethics 183, 184 (1999). See John Harris, Is There a Coherent Social Conception of Disability?, 26 J. Med. Ethics 95 (2000) (discussing eugenics as avoiding disability). Buchanan et al., From Chance to Choice, 40–42. Daniel J. Kevles, In the Name of Eugenics: Genetics and the Uses of Human Heredity 61–63, 96–112 (1985). Victoria F. Nourse, In Reckless Hands: Skinner v. Oklahoma and the Near-Triumph of American Eugenics 20–23 (2008). Id. at 20.

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• Social and legal institutions support normalizing practices. These include healthcare institutions that provide care, health insurance structures that influence access to healthcare services, and legal institutions (courts and legislatures) that provide the laws that govern the distribution and funding of healthcare benefits. • Healthcare delivery and funding is coercive when it seeks to normalize functioning. While medical decisions are made by individuals or families and are in that sense voluntary, legal and social institutions force outcomes that normalize functioning. This is because the practice of medicine, as well as public and private insurance, promote normal functioning as opposed to functional outcomes. To the extent that healthcare services that identify disability for prevention purposes or to otherwise normalize functioning are provided through government health insurance or private plans subsidized by the government, one could argue we have governmentsponsored eugenics.19 • The delivery and funding of healthcare may rely on meaningless distinctions made between individuals based on methods of functioning. • The practice of medicine and healthcare funding may be directly or indirectly eugenic. They are direct to the extent that medical diagnosis and lack of insurance coverage may prevent the birth of, or encourage ending the lives of, individuals with disabilities. They are indirect when health insurance, legal, and other structures favor healthcare services that facilitate typical rather than atypical methods of functioning. To be sure, eugenic healthcare practices differ from traditional and modern conceptions of eugenics in some key ways. Normalizing practices are so deeply embedded in the delivery and funding of healthcare that physicians’ and even patients’ eugenic choices may be more of a default position than the product of deliberate or reflective choice. Arguably, though, this makes eugenics in healthcare more rather than less concerning, as it may not accord with social views about functioning. Further, in the healthcare context, eugenic practices outside the prenatal realm place less emphasis on future generations than traditional or modern eugenic practices. That is, eugenics in healthcare occurs throughout the lifecycle rather than only at birth, often privileging certain ways of functioning rather than preventing lives. In this sense, eugenics in healthcare may speak more to quality of life than preventing life, though disability stigma and discrimination remain present. Additionally, functional traits resulting in disability may not be inherited, though neither were many of the traits in the early eugenics movement, such as unemployment, criminality, and some mental illness. 19

Troy Duster, Backdoor to Eugenics (2003) (discussing genetic screening and testing).

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II. PREVENTING DISABILITY THROUGH HEALTHCARE

The normalization that occurs in healthcare delivery and funding is an example of negative eugenics, as it seeks to prevent atypical functioning or disability. This normalizing push is seen in medical school training, the practice of medicine, and health insurance reimbursement. I offer some brief examples of the normalization that is emphasized in each of these categories, which deserve in-depth examination elsewhere. In medical school training, quality of life often is viewed as negatively impacted by impairment to typical functioning.20 Medical school curricula focus on addressing deviations from typical biological functioning, and atypical functioning is viewed as pathology.21 Disability is considered something to be cured or prevented through treatment or abortion.22 For example, courses discussing deafness focus on the etiology, detection, and treatment of hearing loss itself, rather than the broader cultural or communication issues associated with being Deaf.23 This tension between normal functioning and both quality of life and functional outcomes is highlighted by the debate over cochlear implants for individuals who are Deaf. Cochlear implants were approved by the US Food and Drug Administration (FDA) for clinical use as a medical device in the mid-1980s.24 While they enable some hearing, it is unclear whether cochlear implants result in the best functional outcomes. Some individuals who are Deaf believe cochlear implants trap them between the hearing world and the Deaf community, placing them in a suspended exile of incomplete sound.25 Others hail the device as a medical marvel.26 The choice to be implanted and to seek normalization of 20

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26

See Fiona Kumari Campbell, Medical Education & Disability Studies, 30 J. Med. Human. 221, 224 (2009); cf. Paul Steven Miller & Rebecca Leah Levine, Avoiding Genetic Genocide: Understanding Good Intentions and Eugenics in the Complex Dialogue Between the Medical and Disability Communities, 15 Genetics Med. 95, 99 (2013) (“Medical personnel often assume that the quality of life of a disabled individual is inversely proportional to the degree of physical or mental impairment.”) See Catherine Leigh Graham et al., Teaching Medical Students About Disability in Family Medicine, 41 Fam. Med. 542 (2009); see also cf. Miller & Levine, Avoiding Genetic Genocide 99 (“Interaction with disabled individuals and exposure to courses addressing disability are associated with more favorable attitudes toward people with a disability. Familiarizing future health professionals with disability training and sensitivity may enable them to move away from paternalism . . . many health professionals and researchers understand disability as something that must be cured or prevented through therapy, treatment, or selective termination of pregnancy.”) See Miller & Levine, supra note 20, at 98–100. Lisa M. Harmer, Healthcare Delivery and Deaf People: Practice, Problems, and Recommendations for Change, 42 J. Deaf Studies & Deaf Ed. 93 (1999) (referencing Schein, 1989). See generally What Is a Cochlear Implant?, FDA, www.fda.gov/MedicalDevices/ProductsandMedical Procedures/ImplantsandProsthetics/CochlearImplants/ucm062823.htm (last visited January 28, 2019) (providing background on cochlear implants). See Caroline Praderio, Why Some People Turned Down a “Medical Miracle” and Decided to Stay Deaf, Insider (January 3, 2017), www.thisisinsider.com/why-deaf-people-turn-down-cochlear-implants -2016-12. Id.

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hearing instead of using Sign language is complicated biologically (young children have the most success with cochlear implants),27 culturally, and socially.28 The disease-cure approach to medical training inherently adopts normalization as a goal. This, coupled with the lack of exposure of most medical students to individuals with disabilities, creates negative and often false assumptions about the desirability and effectiveness of atypical functioning. Studies show that increasing medical practitioner exposure to and coursework on disability makes attitudes toward individuals with disabilities more favorable.29 Given medical school training and the goals of normalization articulated therein, it is unsurprising that medical practice seeks to normalize patients. Healthcare delivery promotes typical functioning rather than functional outcomes that may be more efficient or preferred by a patient. As a result, disability is viewed as something to avoid throughout the lifecycle. At the beginning of life, prospective parents may be encouraged to have prenatal genetic testing and to selectively abort fetuses believed to be affected by a biological anomaly. For children and adults, medical procedures and therapies seek to normalize functioning. At the end of life, physicians may discuss assisted suicide rather than palliative care for patients who function atypically. The normalizing push in medicine is exacerbated by the professional role of physicians. Doctors decide the definition of “healthy,” which affects who should be born, what is understood as the optimal manner of functioning, and, thus, what traits are desirable.30 Doctors possess sophisticated medical knowledge while most patients do not, creating a power imbalance that influences the autonomy of patient choice.31 Patients trust and respect physicians and often feel pressure to follow their advice.32 The normalization embedded in healthcare delivery is entrenched within health insurance structures. Individuals who function atypically may be viewed as less healthy and subsequently disadvantaged in risk pooling. Covered healthcare services seek to normalize individuals within both public and private insurance. Some examples of covered healthcare services that normalize functioning appear below along with possible alternatives that support atypical functioning, which may not be covered: • Spinal surgery to walk upright; alternative: wheeling • Cochlear implants for deafness; alternative: Sign language33 27

28

29 30 31 32 33

Anu Sharma et al., A Sensitive Period for the Development of the Central Auditory System in Children with Cochlear Implants: Implications for Age of Implantation, 23 Ear & Hearing 532 (2002). See Dena S. Davis, Genetic Dilemmas and the Child’s Right to an Open Future, 28 Rutgers L.J. 549, 550–75 (1997) (discussing cultural and social considerations about medical interventions to prevent deafness and whether deafness is a harm). Miller & Levine, supra note 20, at 99. See id. at 95–96. Id. at 98–99. Id. at 98. Michael Oliver, Theories of Disability in Health Practice and Research, 317 British Med. J. 1446, 1447 (1998); see also Lennard J. Davis, Enforcing Normalcy: Disability, Deafness, and the Body (1995).

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• “Conductive education” for cerebral palsy; alternative: barrier removal34 • Limb lengthening for achondroplasia; alternative: barrier removal35 • Abortion or cosmetic surgery for Down syndrome; alternative: education of others36 • Therapy of minor cognitive abilities; alternative: education of others • Drug treatment for mild forms of Attention-Deficit/Hyperactivity Disorder (ADHD) to normalize school and work performance and eccentric behaviors; alternative: education of others37 • Cranial surgeries for abnormality; alternative: education of others38 • Intersex surgeries; alternative: education of others39 Perhaps the starkest examples of medical preference for typical functioning arise in the use of healthcare distribution metrics during public health emergencies and other contexts of rationing when individuals who function atypically are deprioritized for medical treatment. III. PREVENTING DISABILITY THROUGH DISTRIBUTION METRICS

Metrics for the distribution of scarce healthcare resources discount the value of atypical functioning and the lives of individuals who rely on it. The metrics used to distribute healthcare services during public health emergencies provide an example. While Section 308(a) of the Stafford Disaster Relief and Emergency Assistance Act specifically addresses disability, federal and state law does not speak to how resources should be rationed accounting for disability.40 The Model State Emergency Health Powers Act and the approximately forty state statutes adopting it do not provide guidance for how to distribute resources considering individuals with disabilities.41 34 35 36 37 38

39

40

41

Oliver, supra note 33, at 1447. Id. Id. See No Child Left Different (Sharon Olfman ed., 2006). See Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality (Erik Parens ed., 2006). See id.; Alice Domurat Dreger, “Ambiguous Sex” – or Ambivalent Medicine? Ethical Issues in the Treatment of Intersexuality 28 Hastings Ctr. Rep. 24 (1998); Kishka-Kamari Ford, Note, First, Do No Harm – The Fiction of Legal Parental Consent to Genital-Normalizing Surgery on Intersexed Infants, 19 Yale L. & Pol’y Rev. 469 (2001). Section 308(a) grants the President broad power in times of emergency, including issuing regulations for the distribution of supplies and relief assistance “in an equitable and impartial manner, without discrimination on the grounds of . . . age [or] disability.” Robert T. Stafford Disaster Relief and Emergency Assistance Act § 308(a), 42 U.S.C. § 5151(a) (2018). See Lawrence O. Gostin et al., The Model State Emergency Health Powers Act: Planning for and Response to Bioterrorism and Naturally Occurring Infectious Diseases, 288 JAMA 622 (2002); Network for Pub. Health Law, The Model State Emergency Health Powers Act: Summary Matrix (June 2012), www.networkforphl.org/_asset/80p3y7/MSEHPA-States-Table-022812.pdf (showing states adopting the Model Act).

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At least sixteen states do address rationing,42 but of those, only New Hampshire specifically gives priority to “high risk or critical need groups,” and it does not provide further instruction.43 During public health emergencies, public and private entities employ metrics to allocate healthcare resources to benefit the greatest number of people. Typically, allocations are made to individuals who are predicted to have the best resulting health states and who will live the longest. While these metrics are intended to measure health status objectively, they may falsely assume those in the best health states survive. Further, these metrics disadvantage individuals with disabilities because either they are perceived as having a lower health status by nature of their disability, or their disability statistically accords with a shorter lifespan than a typically functioning individual. Examples of these metrics include: • Center for Disease Control (CDC) Task Force for Mass Critical Care/ Devereaux Triage Adaptation (2006); excludes: severe baseline cognitive impairment, advanced untreatable neuromuscular disease, metastatic malignant disease, advanced and irreversible neurologic event or condition, and endstage organ failure • Institute of Medicine Crisis Standards of Care (2009); excludes: same, despite containing a statement about “pay[ing] particular to attention to” those with disabilities • Ontario Health Plan for Influenza Pandemic (2006); excludes: same, along with advanced and irreversible immunocompromise • CDC Workgroup for Allocation of Mechanical Ventilators During a Severe Influenza Pandemic (2009); excludes: patients with poor prognosis or who require dependent care due to neurological impairment • American Medical Association’s five principles: allocate scarce resources according to degree of benefit, likelihood of benefit, duration of benefit, cost, and the number of total people who will benefit. Several states have similar criteria. Utah, for example, has exclusions like the Devereaux Triage Adaptation, in addition to exclusions for severe burns and dementia requiring assistance with daily living.44 As documented in the wake of Hurricane Katrina, individuals with disabilities may die when using these metrics deprioritizes or eliminates their treatment. The National Council on Disabilities reported that “a disproportionate number of the 42

43 44

Id. These states include Arizona, Colorado, Hawaii, Illinois, Iowa, Maryland, Mississippi, Missouri, Montana, New Hampshire, New Jersey, New York, North Carolina, Oregon, Oklahoma, and South Carolina. N.H. Rev. Stat. Ann. § 21-P:53 (III) (2018). Utah Department of Health, Utah Pandemic Influenza Hospital and ICU Triage Guidelines (2009), http://pandemicflu.utah.gov/plan/med_triage081109.pdf.

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fatalities were people with disabilities.”45 Similarly, the AARP reported that “73 percent of . . . deaths . . . were among persons age 60 and over, although they comprised only 15 percent of the population in New Orleans,” many with disabilities.46 During Katrina, the American Red Cross was the most significant provider of shelter and food, operating 1,300 shelters and mobilizing 2,400 volunteers.47 They implemented a policy to refuse access to people with obvious disabilities. One employee said, “Our shelters are not for them. There are places for them, run by local health departments . . .. We can’t hardly serve the INTACT people.”48 As depicted by Sheri Fink in her book Five Days at Memorial: Life and Death in a Storm-Ravaged Hospital, when evacuation by helicopter became infrequent, patients were prioritized and assigned numbers for evacuation in the following order: “1,” fairly good health, could sit up and walk; “2,” sicker and needs more assistance; and “3,” patients who “had the least to lose” – critically ill, with do-not-resuscitate orders, or, in one case, a paraplegic and obese patient who could not be carried.49 Immediately before evacuation efforts became easier, a doctor and nurses heavily sedated category 3 patients until death. A week later, forty-five decomposing bodies were found at the hospital.50 IV. CHOOSING DISABILITY AND ABILITY: REFLECTIONS ON HEALTHCARE AND DIFFERENCE

Normalizing functioning in healthcare devalues alternative and effective modes of functioning. This results in false judgements about the functional outcomes, health status, and quality of life of those who function atypically; less effective healthcare for some; and greater costs for insurers when functional outcomes are not attained. At the extreme, individuals with disabilities may not be born, or they may die in circumstances where healthcare metrics devalue atypical functioning. In less extreme cases, individuals with disabilities may not be able to obtain preferred healthcare services or supports. It is possible to approach functioning in a different way and to base medical decisions and healthcare allocations on functional outcomes rather than normalization. This approach would entail changes to medical school curricula and the way healthcare is delivered and funded. Including the voices and experiences of individuals with disabilities in medical education would be vital to this effort, as would restructuring legal and social institutions to support functional outcomes 45

46 47 48 49 50

National Council on Disability, The Impact of Hurricanes Katrina and Rita on People with Disabilities: A Look Back and Remaining Challenges 3 (2006), https://ncd.gov/rawmedia_repository/ e89f084e_e132_496c_a5b8_56351dfb3f10.pdf. Id. Id. at 11. Id. (emphasis in original). Sherri Fink, Five Days at Memorial: Life and Death in a Storm-Ravaged Hospital (2013). Id.

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rather than typical functioning. This would allow patients choice in healthcare services and the ability to function in a manner most effective for individuals. Focusing on functional outcomes allows individuals to choose both disability and ability by supporting different forms of functioning. This conclusion has significant implications for the debate in bioethics regarding whether disability is a “mere difference,” which views various methods of functioning as equally valuable, or a “detrimental difference,” which views disability as impairment to be avoided. Detrimental difference proponents argue, in part, that a neutral approach to functional differences may endanger the resources devoted to preventing and curing disability. The overall problem with a detrimental difference approach is that it devalues effective atypical methods of functioning.51 This focus skews the sense of how legal and social structures could support impairment. Resources must be devoted to both effective typical and atypical methods of functioning. To be sure, serious philosophical arguments that cannot be fully examined here are levied in support of the detrimental difference approach, so I offer only a few observations based on proponents’ standard arguments relevant to healthcare. Contrary to some detrimental difference scholars,52 adaptation rather than restoration of normal functioning need not be harmful to health status or broader wellbeing. Indeed, atypical functioning may be more effective in certain circumstances. Further, there is no “nature of disability” – even normally functioning individuals may have potentially harmful biological variations, such as genetic predispositions, aneurysms, etc. An individual with a disability may not be able to do everything that someone without a disability can do, but a typically functioning individual may be unable to function as well as someone with a disability (for example, consider the stamina of an individual with bipolar disorder or the cognitive abilities of some individuals with Autism Spectrum Disorder). Relatedly, detrimental difference approaches seek to prevent harm, but preventing or causing harm is not a meaningful metric in situations where functional impairment will remain after any possible intervention, which may be the case for some individuals with disabilities. Further, though individuals’ choice to function atypically may be subjective,53 subjectivity in identifying or assessing disability does not mean an individual’s viewpoint is invalid; biological interpretation certainly is not entirely objective, as varying clinical assessments and second medical opinions demonstrate. Thus, a mere difference approach to healthcare has strong normative support and may facilitate better functional outcomes. It is worth noting that a mere difference approach does not mean, as some proponents of detrimental difference argue, that 51

52 53

I have argued that these judgments about the quality of life associated with atypical functioning are moral judgments. Ani B. Satz, Prenatal Genetic Testing and Discrimination Against the Disabled: A Conceptual Analysis, 18 Monash Bioethics Rev. 11 (1999). See Greg Bognar, Is Disability Mere Difference?, 42 J. Med. Ethics 46, 47 (2016). Id. at 46.

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preventing or removing disability through healthcare to facilitate a functional outcome is unjustified.54 A disability may be a mere difference but still something an individual would like to change. In fact, removing the stigma about disability and atypical functioning may mean more people seek normalizing medical care, including for mental disabilities.55 V. CONCLUSION

This chapter argues the way in which healthcare is taught, delivered, and funded is eugenic. This is because healthcare seeks to normalize human functioning – preferencing certain functional traits over others – rather than focusing on functional outcomes. The legal and social structures supporting healthcare access deeply entrench normalization as a medical goal. Shifting from normalizing to promoting functional outcomes would result in a radical change in the healthcare of individuals with disabilities and an important social shift in the way disability is understood. Individuals with disabilities would have access to healthcare services that facilitate effective and preferred functioning. Healthcare metrics would not automatically deprioritize individuals with disabilities. Disability would be understood on a continuum of functioning, with functional outcomes for all patients supported by legal and social institutions. Additionally, the concept of eugenics adopted here has implications for the use of biological or social enhancements for individuals with disabilities that facilitate atypical methods of functioning. Focusing on functional outcomes raises the question of the role of technology in enabling functioning and the value of enhancements for individuals with disabilities. High technology healthcare may assist individuals with disabilities who function atypically by facilitating enhancements to “treat” individuals with disabilities. Most often these enhancements will be to one unimpaired biological function to compensate for another impaired function, for example, strengthening one’s core to address lower back problems56 or increasing capillary formation to bypass a blocked artery.57 Environmental enhancements may play a similar role. The role of enhancements in facilitating effective atypical functioning requires further exploration in future work. 54

55

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See Elizabeth Barnes, Valuing Disability, Causing Disability, 125 Ethics 88 (2014). Also, a mere difference approach does not mean that causing a disability through healthcare is necessarily permissible. Id. Jeffrey C. Kirby, Disability and Justice: A Pluralistic Account, 30 Soc. Theory & Prac. 229, 234–38 (2004). Wen-Dien Chang, Hung-Yu Lin & Ping-Tung Lai, Core Strength Training for Patients with Chronic Low Back Pain, 27 J. Physical Therapy Sci. 619 (2015); Tae-Ro Lee, Yoon Hyuk Kim & Paul S. Sung, A Comparison of Pain Level and Entropy Changes Following Core Stability Exercise Intervention, 17 Med. Sci. Monitor CR362 (2011). See Ani B. Satz & Anita Silvers, Disability and Biotechnology, in Encyclopedia of Ethical, Legal, and Policy Issues in Biotechnology (Thomas H. Murray & Maxwell J. Mehlman eds., 2000).

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Whether standard or enhancement therapies are at stake, strong normative and policy reasons support providing healthcare services that facilitate effective atypical functioning. Devaluing such services adversely impacts the healthcare of individuals with disabilities. The normalizing, eugenic thrust of the delivery and funding of healthcare must be reexamined as a matter of equality for individuals with disabilities.

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3 Epistemic Injustice, Disability Stigma, and Public Health Law Daniel Goldberg

The primary claim of this chapter is that public health law can integrate medical and social understandings of disability in ways that promise to reduce disability stigma and enhance epistemic justice. However, models of disability currently embedded in public health law do precisely the opposite, at least partly due to the fact that public health laws have historically assimilated medicalized models of disability.1 Such models are born in the nineteenth century, and they continue to exert outsized and problematic effects in shaping the impact of public health law on disabled people. Accordingly, it is impossible either to understand the deficiencies of prevailing (medical) models of disability codified in public health law or to propose solutions without sufficient grounding in the nineteenth-century roots of those models. The integrative approach developed here is therefore rooted in a historically fluent framework that contextualizes the significant harms wreaked by purely medical models of disability. While disability scholars and advocates have begun to argue for reconciliation between medical and social models of disability,2 public health law has been slow to incorporate such reconciliation. In this chapter, I argue that the result of this gap is continued perpetration of epistemic injustice and stigma against disabled people through the medium of public health law. This is ethically unacceptable. Fortunately, the fact that public health law mediates disability stigma indicates that the success of conscious efforts to turn public health law to just ends is possible. This chapter argues that such efforts are ethical imperatives, and recommends doing so by integrating medical and social models of disability in ways that maximize epistemic justice for disabled people. Such an approach acknowledges that some 1

2

See Deborah A. Stone, The Disabled State (1986); Jessica L. Roberts, Health Law as Disability Rights Law, 97 Minn. L. Rev. 1963 (2013); Richard K. Scotch, Models of Disability and the Americans with Disabilities Act, Berkeley J. Emp. & Lab. L. 213 (2000). The work of Tom Shakespeare is particularly important in this area. See, for example, Tom Shakespeare, Disability Rights and Wrongs Revisited (2013); Tom Shakespeare et al., Rehabilitation as a Disability Equality Issue: A Conceptual Shift for Disability Studies?, 6 Soc. Inclusion 61 (2018); Tom Shakespeare, The Social Model of Disability, in The Disability Studies Reader 197 (2nd ed. 2006).

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forms of medical and health services can be powerful tools in helping disabled people achieve meaningful and flourishing lives. Section I of this chapter explains the concept of epistemic justice and argues for its special significance in unpacking the lived political and social experiences of marginalized groups, including disabled people. Section II examines the ways in which public health law mediates health stigma in general, and then moves on to consider the relationship between public health law and disability stigma in particular. Doing so obviously requires analysis of the ways in which disability stigma tracks specific understandings of what it means for a person to be disabled. Section III is also devoted to analysis of how the intensification of disability stigma through public health law is epistemic injustice. Section IV concludes by examining the potential of public health law to diminish disability stigma and thereby satisfy mandates of epistemic justice. I. DISABILITY AND EPISTEMIC INJUSTICE

Philosopher Miranda Fricker’s 2007 book, Epistemic Injustice: Power and the Ethics of Knowing, initiated a new stream of work in moral and political philosophy. Among many insights, Fricker pointed out that a dimension of injustice occurs where A wrongs B in B’s capacity as a knower. This delegitimization of B’s lived experiences is epistemic in nature. Fricker outlined two types of epistemic injustice: hermeneutical and testimonial. In the former, the utterer has some significant area of their social experience obscured from collective understanding due to a “structural identity prejudice.”3 Thus, in a culture which downgrades or disbelieves the very idea of sexual harassment, a person who experiences such harassment may find listeners in such a society doubting that experience because of the lack of the shared resource required to validate and understand the harassed person’s experience. Testimonial injustice occurs where “a hearer’s prejudicial stereotyping causes the listener to attribute a reduced level of credibility to a speaker’s testimony than they otherwise would have given if the prejudice was not present.”4 Obviously, in any given social order, some groups are more or less likely to be wronged in their capacity as knowers, to have their voices silenced or heard, their experiences validated or delegitimized. In the contemporary West, there is little question that disabled people are especially likely to suffer epistemic injustice. Kalman et al. note that persons with intellectual disabilities are typically “ignored, neglected, and judged as lacking with regard to trustworthiness.”5 Dohmen’s 2016 paper argues that the common tendency of attributing credibility deficits to 3 4

5

See Miranda Fricker, Epistemic Injustice: Power and the Ethics of Knowing 155 (2007). Daniel Z. Buchman et al., Investigating Trust, Expertise, and Epistemic Injustice in Chronic Pain, 14 J. Bioethical Inquiry 31 (2017). Hildur Kalman et al., Epistemic Injustice and Conditioned Experience: The Case of Intellectual Disability, 14 Wagadu: J. Transnat’l Women’s & Gender Studies 63, 66 (2016).

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intellectually disabled people is epistemic injustice precisely “because it assumes that all persons who share the diagnosis deserve equal (and usually equally low) credibility.”6 Dohmen goes on to document myriad other epistemic injustices commonly experienced by intellectually disabled people, such as, finding an autistic person’s testimony less credible because that person relies on an aide, or when the voices of people with even mild intellectual disabilities are excluded from philosophical discourse about disability.7 Yet, there is every reason to suspect that examples of epistemic injustice as to disability in general are connected to broader structures that powerfully shape the way disability is socialized and interpreted. The medical model that has so dominated Western conceptions of disability is almost certainly connected to epistemic injustice inasmuch as it locates difficulties in living as a disabled person within that person’s disabled body. How so? Overwhelming evidence, much of it found by taking seriously the voices and experiences of disabled people, supports the basic premises of the social model of disability. This model locates the cause of the majority of difficulties that disabled people experience as society itself, expressed largely via the absence of resources, supports, and social policies that help disabled people live meaningful, flourishing lives.8 The juxtaposition between traditionally dominant medical models of disability and the social model instantiates a basic hermeneutical injustice in which able-bodied people, and especially healthcare providers, lack a basic understanding of the ways in which the primary causes of suffering and injury among disabled people are located in deep social structures, rather than within the disabled person. This epistemic gap can have profound consequences. Paul Longmore’s searing 2005 critique of national and bioethical discourse on physician-assisted dying shows how virtually all of the debate in the relevant cases adopted frameworks of methodological individualism.9 The questions debated centered on subjects such as whether the disabled person could live a meaningful life or whether the disabled person possessed an individual right to die, rather than documenting, as Longmore does, how the lack of social resources, policies, and safety nets combined to render the disabled person’s life unlivable.10 6

7

8

9

10

Josh Dohmen, A Little of Her Language: Epistemic Injustice and Disability, 93 Res Philosophica 669, 677 (2016). See id. at 677–78; see also Shelley Tremain, Knowing Disability, Differently, in The Routledge Handbook of Epistemic Injustice 175 (2017). The literature on the social model of disability is immense. The updated version of The Disability Studies Reader (Lennard Davis, ed., 2016) is an excellent place to start. See Daniel S. Goldberg, Social Justice, Health Inequalities, and Methodological Individualism in U.S. Health Promotion, 5 Pub. Health Ethics 104 (2012). Longmore’s critique, of course, is part of a larger and longer attack on the tendency of applied ethicists to discuss disability without meaningfully engaging the voices of disabled people themselves – a rank and obvious epistemic injustice so problematic that it has given birth to a relatively recent subfield premised on the desire to cross the epistemic gap and enhance epistemic justice: disability-conscious bioethics. See Eva Feder Kittay & Licia Carlson, Cognitive Disability and its Challenge to Moral

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Or consider the implications for advance directives and end-of-life care that flow from the fact that able-bodied people tend to underestimate dramatically the quality of life enjoyed by even significantly disabled people. Scholars like Carol Gill have pointed out that this problem is profound, for it signifies a serious hermeneutical gap in the basic ability of able-bodied people to imagine that even seriously disabled people might be able to lead meaningful and flourishing lives, given sufficient support and resources.11 This argument is arguably the core of Longmore’s analysis and, while he had no access to the framework of epistemic injustice in his 2005 paper, there is little doubt that it captures important elements of his argument.12 Of course, the claim that the lived experiences of disabled people in the United States frequently involve epistemic injustice is not above challenge. In the first place, given the immense variety in types of impairments and experiences of disability, questions of whether “disabled people” properly qualify as an identifiable group for purposes of oppression analysis arise (this is especially the case where so many people living with invisible disabilities are able to pass). Second, as Tremain has argued, for all its potential, at least some applications of the framework of epistemic injustice do not adequately account for the “unequal hermeneutical participation that produces” hermeneutical injustice for disabled people.13 Nevertheless, this chapter proceeds on the argument that the notion of epistemic injustice captures something distinctive and significant about the kinds of injustices to which disabled people are often subjected. Fricker’s insight is that it is possible to wrong people in their capacity as knowers, especially about their own lived experiences. Furthermore, the epistemic gaps with which Fricker’s framework is concerned often help determine how crucial goods and services are distributed in a social order. Disabled people in the West, for example, historically have received less than equitable amounts of the resources needed to lead flourishing and meaningful lives. This is the entire point of Longmore’s critique, and is arguably a fundamental theme of the field of disability studies itself in North America. To correct maldistributions, we must redress the epistemic injustices that not only initiate, but also sustain and intensify them.

11

12

13

Philosophy (2010); Alicia Ouellette, Bioethics and Disability: Toward a Disability-Conscious Bioethics (2011); Jackie Leach Scully, Disability Bioethics: Moral Bodies, Moral Difference (2008); Adrienne Asch, Disability, Bioethics and Human Rights, in Handbook of Disability Studies 307 (2001). See Carol J. Gill, Depolarizing and Complicating the Ethics of Treatment Decision Making in Brain Injury: A Disability Rights Response to Nelson and Frader, 15 J. Clinical Ethics 277 (2004). See Paul K. Longmore, Policy, Prejudice, and Reality: Two Case Studies of Physician-Assisted Suicide, 16 J. Disability Pol’y Studies 38 (2005). See Tremain, supra note 7, at 178.

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II. EPISTEMIC INJUSTICE, DISABILITY STIGMA, AND PUBLIC HEALTH LAW

The most detailed exploration of the potential links between epistemic injustice and disability stigma flows from Kidd and Carel’s 2017 paper on epistemic injustice and chronic illness.14 There is obviously substantial overlap between phenomenologies of chronic illness or noncommunicable disease and disability. Kidd and Carel frame their application of Fricker’s model by noting the significance of (negative) stereotypes as a central component of both testimonial and hermeneutic injustice. This observation maps neatly onto Link and Phelan’s conceptual model of stigma insofar as it incorporates both difference (marking out of chronically ill persons via stereotype) and deviance (negative assignation).15 Quoting Arthur Frank, Kidd and Carel assert that “a broad theme of these stereotypes is . . . that ‘the power of stigma has fed on seeing the body’s condition as an expression of morality,’ such that the fact of illness is a mark of moral, social, and epistemic failure.”16 Later on in their paper, Kidd and Carel note that stigma plays a critical role in sustaining hermeneutical injustice, because many chronically ill people are reluctant to expose their lived experiences to a society that “largely consider[s them] inappropriate for public discussion . . . Such experiences are often considered private, if not shameful, and inappropriate for sharing with others. They are also stigmatizing and therefore talking about them can exact a social and personal cost from the ill person (e.g., disclosing one’s HIV status can lead to social exclusion in certain groups).”17 This observation is consistent with Burris’ analysis of the tendency for stigmatized people and communities to pass as members of the population’s majority wherever possible.18 Yet Kidd and Carel suggest that not only does such self-suppression have adverse impact on those attempting to pass, but also fuels and sustains the hermeneutical injustice that itself fuels and sustains stigma against the chronically ill (and the disabled, I would argue). This is because, under Fricker’s analysis, hermeneutical injustice arises from a shared lack of social resources needed to understand the speaker’s lived experiences. Passing, or suppressing one’s own experiences rooted in identities shaped by illness or disability, perpetuates the lack of resources needed to understand those experiences (of course, this is no fault of the stigmatized person – passing is eminently rational behavior in response to stigmatizing social structures). I propose, as a heuristic device, a basic feedback loop model (/1) in which both dimensions of epistemic injustice (testimonial and hermeneutical) reflect and feed disability stigma. Note, of course, that the flows between the phenomena are bidirectional – preexisting stigma against a marginalized group can intensify 14 15 16 17 18

See Ian James Kidd & Havi Carel, Epistemic Injustice and Illness, 34 J. Applied Phil. 172 (2017). See Bruce G. Link & Jo C. Phelan, Conceptualizing Stigma, 27 Ann. Rev. Soc. 363 (2001). Carel & Kidd, supra note 14, at 176 (citation omitted). Id. at 184 (internal citation omitted). See Scott Burris, Disease Stigma in U.S. Public Health Law, 30 J.L. Med. & Ethics 179 (2002).

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Marginalization/ oppression

Stigma

Epistemic injustice and disability stigma

Testimonial injustice

Hermeneutical injustice

figure 3.1: Epistemic injustice and disability stigma feedback loop

testimonial or hermeneutical injustice just as testimonial injustice can intensify (disability) stigma. Moreover, social disadvantage is an upstream determinant for all of these phenomena – inequality drives both stigma and epistemic injustice at the same time that stigma and epistemic injustice drive at least some forms of health and healthcare inequalities. The likelihood that all of these complex social phenomena – disability, stigma, epistemic injustice, and compliancepower – are related in bidirectional ways obviously complicates the analysis. However, such complexity is not a deficiency in the theory, nor does social causality need to be understood in linear, unidirectional pathways to guide intervention and policy efforts.19 19

Here, the burgeoning literature applying complexity theory (i.e., nonlinear dynamical systems theory) to health policy may be instructive. See Michele Battle-Fisher, Application of Systems Thinking to Health Policy & Public Health Ethics: Public Health and Private Illness (2014); Thomas G. Kannampallil et al., Considering Complexity in Healthcare Systems, 44 J. Biomedical

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One possible example of the complex and interlocking relationship between epistemic injustice, disability, stigma, and inequality is in the realm of chronic pain. In a recent paper, Dan Buchman, Anita Ho, and I explicate the connections between trust, doubt, stigma, and epistemic injustice for chronic pain sufferers in North America in particular.20 The tens of millions of people who experience this condition have historically and enduringly experienced disbelief and silencing. Historian Joanna Bourke points out that the story of pain is in some sense a story of selective hearing – some people’s voices and narratives of pain are much more likely to be heard than others.21 Moreover: The question of “whose pain is heard” is not only correlated with power differentials between different groups in society (in which case, the solution is to improve access to resources); patients considered to be “truly” in pain are also directly constituted by those differentials. The belief that not every person-in-pain suffers to the same degree is intrinsic to hierarchical systems generally . . .. The process of labelling is itself indicative of power.22

These doubts are fairly characterized as epistemic injustice, and they are fundamental to pain stigmatization as well. Few disability studies scholars would contest that chronic pain qualifies as disability.23 Moreover, the epidemiology of pain very starkly demonstrates social inequalities across a variety of important indicia in North America, and especially in the United States.24 Here, pain tracks racial and genderbased inequalities, and is no doubt connected to histories of oppression and structural violence.25 The only remaining question, then, is about the possible links between epistemic injustice, disability stigma, and public health law. There is widespread agreement among public health law scholars that the boundaries of what counts as public health law ought to be read expansively, given the wide scope of laws that exert

20 21 22 23

24

25

Informatics 943 (2011); Kenneth Resnicow & Scott E. Page, Embracing Chaos and Complexity: A Quantum Change for Public Health, 98 Am. J. Pub. Health 1382 (2008); David S. Thompson et al., Scoping Review of Complexity Theory in Health Services Research, 16 BMC Health Servs. Res. 87 (2016). See Daniel Z. Buchman et al., supra note 4. See Joanna Bourke, The Story of Pain: From Prayer to Painkillers (2014). Id. at 230. See Daniel S. Goldberg & Summer J. McGee, Pain as a Global Public Health Priority, 11 BMC Pub. Health 770 (2011). See Inst. of Med., Comm. on Advancing Pain Research, Care, & Educ Board on Health Sci. Pol’y, Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research (2011). See Daniel S. Goldberg, The Bioethics of Pain Management: Beyond Opioids (2014); Keith Wailoo, Pain: A Political History (2014); Keith Wailoo, Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health (2001); Daniel S. Goldberg, Pain, Objectivity, and History: Understanding Pain Stigma, 43 Med. Human. 238 (2017) (hereinafter Goldberg, Pain); Kelly M. Hoffman et al., Racial Bias in Pain Assessment and Treatment Recommendations, and False Beliefs about Biological Differences Between Blacks and Whites, 113 Proc. Nat’l Acad. Sci. 4296 (2016).

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a substantial impact on public health.26 Indeed, one of the fundamental premises of the “Health in all Policies” approach is that cordoning off different sectors of law and governance from public health policy analysis is inadvisable given the powerful impact that a variety of laws and policies have on population health.27 To put it another way, law is a major social determinant of health;28 while there are good reasons, for example, to regard “housing law” qua housing law, conceptualizing this legal domain as something apart from public health law writ large is inadvisable given its significant health impact. Although, of course, not everyone agrees, this chapter tracks majority opinion in defining public health broadly to include areas of law and policy that have substantial impacts on public health. Such fields can of course be fruitfully analyzed in terms of their own specific domains; there is no inconsistency in considering housing law both as its own subfield and as an important component of public health law, for example. The same is true for disability law and policy. Moreover, there is little question that historical paths and traditions have a marked impact in reproducing stigma, and that public health laws and policies have had a substantial impact in mediating such stigma in the United States. For example, consider Susan Schweik’s analysis of various “ugly laws” enacted largely by municipalities in the mid-to-late nineteenth century.29 Schweik documents how late Victorian and Gilded Age concerns about the impact of visible mendicancy and beggary on late nineteenth-century US cityscapes prompted passage of these ugly laws, most of which were expressly conceptualized and promulgated in the name of hygiene and public health. Because of the close intellectual and social connections of filth and disease30 – themselves key constructs in Victorian and Gilded Age notions of hygiene, which had obvious and powerful moral and class-based connotations as well – there is little doubt that many actors advancing the ugly laws saw their efforts as part of a program of public health and urban beautification.31 26

27

28 29 30

31

See Lawrence O. Gostin & Lindsay F. Wiley, Public Health Law: Power, Duty, Restraint (2016); O. Lundberg et al., The Role of Welfare State Principles and Generosity in Social Policy Programmes for Public Health: An International Comparative Study, 372 Lancet 1633 (2008); cf. Roberts, supra note 1. See Richard L. Hall & Peter D. Jacobson, Examining Whether the Health-in-all-Policies Approach Promotes Health Equity, 37 Health Affairs 364 (2018); Health in All Policies, Centers for Disease Control and Prevention (June 9, 2016), https://www.cdc.gov/policy/hiap/index.html. See Gostin & Wiley, supra note 25; Burris, supra note 18. See Susan M. Schweik, The Ugly Laws: Disability in Public (2009). See Christopher Hamlin, Public Health and Social Justice in the Age of Chadwick: Britain, 1800–1854 (1998); Naomi Rogers, Dirt and Disease: Polio Before FDR (1992); Jacob SteereWilliams, The Perfect Food and the Filth Disease: Milk-Borne Typhoid and Epidemiological Practice in Late Victorian Britain, 65 J. Hist. Med. & Allied Sci. 514 (2010). It is important to avoid presentist fallacies in judging historical patterns, events, and conditions. For my purposes, the actual merits of these laws, past or present, are not nearly as relevant as the fact that many contemporaneous actors deemed them to be public health laws and policies with solid public health justifications driving their enactment. Part IV discusses the persistence of this dynamic in public health laws and policies to the present.

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Similarly, Andrea Patterson documents how, in the first quarter of the twentieth century, evolving conceptions of microbiology and communicable disease had a marked impact on public health laws and policies in the Jim Crow South.32 While some laws and policies did improve African–American health – enacted primarily in the interests of White preservation – scientific racism and eugenicist thought also fueled public health laws and policies targeted at African–American communities, including authorizations for involuntary sterilization and abortion. As Patterson concludes, “public health responses to the dire state of southern black health ranged from indifference and inaction to inadequate and often racially motivated efforts to curb disease.”33 Public health laws and policies even instantiated racial segregation, requiring a “costly dual health care system that proved especially devastating to blacks who were relegated to substandard facilities and negligent care.”34 There is every reason to believe these historical links between disability stigma and public health law endure to the present, and do so in ways that mark epistemic injustice. Returning to the current example of chronic pain, Ben Rich and I have pointed out how many of the universal precautions approaches enshrined in drug law regarding opioid prescriptions for pain sufferers are prima facie discriminatory.35 They mark out a class of people as different – chronic pain sufferers for whom opioids are prescribed – and treat them as deviant, subjecting them to all sorts of tests and screenings intended to discern whether the pain sufferers are misusing or diverting the medications. Such conduct is a textbook example of disability stigma, and the regulatory regime that governs opioid prescriptions sustains and fuels this stigma in a variety of ways that are well documented in scholarship on opioid law in particular (e.g., requiring substantial additional documentation of prescribers, requiring extensive drug monitoring of chronic pain suffers who take opioids, establishing dosage thresholds, etc.).36 Here too, there is reason to believe epistemic injustice is relevant, as skepticism, doubt, and mistrust that attend chronic pain sufferers are enshrined in laws that regulate an intervention that is clinically indicated for at least some such sufferers.37 32

33 34 35

36

37

See Andrea Patterson, Germs and Jim Crow: The Impact of Microbiology on Public Health Policies in Progressive Era American South, 42 J. Hist. Biology 529 (2009). Id. at 554. Id. See Daniel S. Goldberg & Ben Rich, Pharmacovigilence and the Plight of Chronic Pain Patients: In Pursuit of a Realistic and Responsible Ethic of Care, 11 Ind. Health L. Rev. 83 (2014). See Daniel Z. Buchman et al., The Epidemic as Stigma: The Bioethics of Opioids, 45 J.L. Med. & Ethics 607 (2017); Corey Davis & Derek Carr, State Legal Innovations to Encourage Naloxone Dispensing, 57 J. Am Pharm. Ass’n S180 (2017); Andrea M. Garcia, State Laws Regulating Prescribing of Controlled Substances: Balancing the Public Health Problems of Chronic Pain and Prescription Painkiller Abuse and Overdose, 41 J.L. Med. & Ethics 42 (2013). See Buchman et al., supra note 34; Buchman et al., supra note 4. There is an extensive literature linking difficulties in treating pain to laws and policies, including public health law in particular. See Goldberg, supra note 24. Although I maintain that too much of this scholarship focuses overmuch on

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The point is that chronic pain, considered as a structural case study, provides an all too real example of the interlocking connections between epistemic injustice, disability, stigma, and public health law. Of course, a great deal more remains to be explored in this area; the conceptual map thus far hopefully offers some suggestions for future analyses. III. RECOMMENDATIONS FOR ADDRESSING THE EPISTEMIC INJUSTICE OF DISABILITY STIGMA

The final portion of this chapter will survey briefly some recommendations for interventions that can be harnessed to ameliorate epistemic injustice and disability stigma. Obviously, these recommendations would require rigorous evaluation via methods in public health law research and legal epidemiology to justify any significant belief in efficacy. Nevertheless, one of the underlying claims of this chapter is that ideas and concepts have the potential to be policy relevant. The social and intellectual history of public health shows that, embedded in a social matrix, ideas can exert a profound effect on public health policy. Ideas, as I have written, are social actors in public health. Although a full exploration is beyond the scope of this chapter, there is no doubt that especially in the context of social welfare policies in Western societies, people seeking relief have constantly been subjected to doubt, silencing, and dubiety. There is ample evidence of anxiety over feigned illness at least as far back as the High Middle Ages, and there is extensive evidence documenting the persistence of such concerns across time, place, and society to the present. There is no question that these ideas and forces influence contemporary political discourse on social welfare.38 Disentangling the complex relationship between these palpable social anxieties, disability policy, and public health laws over a thousand years in the West is a hugely important endeavor that has not enjoyed sufficient scholarly attention. Nevertheless, it requires no intricate analysis to understand the intuitive connections between these histories, epistemic injustice, and stigma as it relates to the socialization of disability and disability status. Consider the significant anxieties voiced about disability fraud connected to social welfare benefits such as Medicaid. Stakeholders anxious about disability and benefit fraud will – as they have for centuries – warn of lowering the ramparts against hucksters and “malingerers,” and of facilitating deception and feigned illness. Two points are most relevant here in response. First, on the merits, at least in contemporary US politics, the evidence overwhelmingly suggests that cases of individual claimants committing disability fraud are rare; the vast

38

drug policy – which is not equivalent to pain policy – there is nevertheless no question that legal structures have a profound impact on the experience of chronic pain in North America. See Daniel S. Goldberg, Ideas and Social Welfare Policy, Soc. for U.S. Intell. Hist. (April 9, 2017), https://s-usih.org/2017/04/ideas-and-social-welfare-policy/.

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proportion of disability fraud comes from providers acting with scienter to induce fraudulent payment from state and federal payers.39 Second, and, in some sense more important, it is critical to locate anxieties about fraud and dissimilitude in their social and historical contexts. Scholars have developed a number of explanations for the persistence of these anxieties into the modern era, ranging from the intense Victorian concerns about deception (in the rapidly changing, dislocating social and political world of the late nineteenth century)40 to the wax of ideas of mechanical objectivity that increasingly shaped ideas of truth and falsity.41 Whatever the complex mix of factors that sustain and fuel such skepticism against people in the United States who seek social welfare support on the basis of illness or impairment, there is no question that the resulting stigmatization of disabled people tracks a variety of social fault lines demarcating marginalization, disadvantage, oppression, and structural violence. As such, whatever the merits of expressed anxieties regarding disability and benefit fraud, that very expression is itself the product of deeply rooted histories of stigma and, arguably, epistemic injustice that have also been facilitated by disability and public health law. Thus, the very act of doubting disability ought not be regarded as an abstract question posed by a concerned individual or group. Regardless of the intention of the utterer, the doubt and skepticism in itself perpetuates longstanding stigma against disabled people and has historically been mobilized in problematic ways with profound consequences for disabled people past and present. And, of course, the fact that structural injustice can be perpetuated regardless of the intention of any given social actor is axiomatic to oppression analysis in general. Accordingly, identification of specific laws and policies that instantiate such doubts and anxieties is an especially promising starting point for remedying disability stigma and epistemic injustice in public health law. The aforementioned regulations and laws regarding opioid analgesics for chronic pain sufferers are an obvious example of such a point of intervention. While many of these restrictions emerge from preexisting stigmas against chronic pain sufferers, public health laws mediate and channel those stigmas in ways that produce deleterious consequences for a marginalized group of people living with the often invisible disability of chronic pain. There is general agreement that the “subjectivity” of chronic pain is part of what invites so much suspicion and skepticism. Jean Jackson has noted a moral hierarchy of pain, with acute pain resulting from obvious material pathologies (i.e., mechanical trauma from a motor vehicle accident) at the top of the hierarchy, and nonspecific chronic pain occupying the bottom ranks.42 Moreover, note that the difficulties 39 40 41 42

See Center on Budget and Policy Priorities, Chart Book: Social Security Disability Insurance (2017). See Martha Stoddard Holmes, Fictions of Affliction (2004). See Goldberg, Pain, supra note 25. See Jean E. Jackson, Stigma, Liminality, and Chronic Pain: Mind-Body Borderlands, 32 Am. Ethnologist 332 (2005).

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involved here are epistemic in nature; chronic pain sufferers for whom opioids are indicated begin from a position of doubt, skepticism, and stigmatization. As often multiply marginalized people, they are charged with proving to prescribers and care teams, policymakers, and public health agencies that a clinically indicated intervention will be taken as directed and used appropriately. They are therefore marked as different and judged as deviant (stigma) by laws that both result from and perpetuate testimonial and hermeneutical injustices. The damaging consequences of these drug laws and others like them are a function of what Link and Phelan recently termed “stigma power.”43 Stigma is a function of social power and inequality. This means that, typically, stigma results in adverse social consequences for the out-group bearing the stigma. While such consequences may or may not enter into any individual stigmatizing event, Link and Phelan argue that one of the distinctive features of stigma is that the power wielded by in-groups is deployed to the social detriment of the outgroup. Thus, it is not merely the case that disability stigma results in loss of social status for disabled people, but that such status loss is closely related to powerful social consequences, which in turn can have significant deleterious impacts on health. This analysis suggests the possibility of an association between epistemic injustice and important population health metrics. Indeed, we should predict such an association on the basis of the increasing evidence linking stigma to adverse health. If stigma and epistemic injustice are closely related, and if stigma as mediated by public health law is associated with adverse population health, we should not be surprised at the existence of a relationship between epistemic injustice and adverse health. This supposition is not to commit the transitive fallacy. Rather, the claim is that there are shared components of the respective structures of epistemic injustice and stigma, and that these shared components are the same features of stigma that most likely act as mechanisms driving adverse health outcomes. Of course, hypotheses require evaluation and, to date, robust measurement of public health law’s mediation of stigma is in its relative infancy. No such assessments have been conducted, nor have links between epistemic injustice and adverse population health been evaluated. Nevertheless, the overarching point is that, as a category, public health laws that facilitate doubt and skepticism regarding the lived experiences of disability intensify stigma and perpetuate epistemic injustice against disabled people. Amending such laws is therefore a promising pathway to reducing such stigma and advancing epistemic justice. Of course, the structural roots of disability stigma and the acculturation of epistemic injustice against marginalized groups in the United States is unlikely to be solved by public health law alone. Disability history provides powerful evidence that providers and caregivers alike are all too likely to doubt and silence 43

See Bruce G. Link & Jo C. Phelan, Stigma Power, 103 Soc. Sci. & Med. 24 (2014).

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sick and disabled people’s lived experiences. While public health laws can perhaps ameliorate these propensities by structuring carrots and sticks accordingly, because legal regimes are by definition mediators of fundamental causes, legal interventions are not likely to alter dramatically the upstream and deeply rooted structures that drive disability stigma and epistemic injustice.

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Introduction to Part II I. Glenn Cohen

The late singer-poet-novelist Leonard Cohen entitled one book of verse Let Us Compare Mythologies.1 In a sense, all of the chapters in this Part ask us to do exactly that. I do not mean “mythology” in a pejorative sense, but in all its anthropological splendor: taking facts on the ground and understanding them as part of a coherent sense-making worldview, albeit one that may not be falsifiable in a standard sense. But if that still seems pejorative, perhaps we might instead say “Let Us Compare View-Masters,” a reference to the red stereoscopic viewers that have delighted children (and adults) for decades by allowing us to enter static renderings with depth perception of lands real and imagined. Each of the chapters in this Part struggles with the problem of the appropriate View-Master for a critical decision relating either to the beginning or the end of life. In Marie-Eve Lemoine and Vardit Ravitsky’s “The Down Syndrome Information Act and Mere-Difference: Redefining the Scope of Prenatal Testing Conversations?” and Mary Anne Case’s “Abortion, the Disabilities of Pregnancy, and the Dignity of Risk” we try to imagine what the life of a child with a serious disability would be like and what it would be like to parent that child. Similarly, in Rebecca Dresser’s “Dementia, Disability, and Advance Directives: Defensible Standards for Dementia Care” we are asked to imagine what a future version of oneself experiencing dementia would be like, and the propriety of treating the present person’s preferences as binding on the person with dementia. “It’s tough to make predictions, especially about the future,” a statement usually attributed to Yogi Berra (though sometimes to Niels Bohr or others),2 but the predictions these authors struggle with are particularly difficult because they involve, in a sense, two separate judgments: one about oneself and one about other people. This is straightforward in the case of pregnancy, prenatal testing, and the question of abortion: the person (and in some cases, as Case discusses, the state that may permit or forbid the person’s decision) is making a judgment both 1 2

Leonard Cohen, Let Us Compare Mythologies (1966). See, for example, Felicity Pors, Letter to the Editor, Economist (July 15, 2007), www.economist.com/blogs/ theinbox/2007/07/the_perils_of_prediction_june.

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about how life will be for the child she might give birth to, the (future) person with a disability, and also for herself, as a parent of a potential child with a disability. In regard to dementia, the challenge is understanding who the key decision-maker is: am I deciding about what a future “me” would want when dementia manifests, or is there enough of a discontinuity between the “me” who completes the advance directive (Time 1) and the person with dementia whose medical decisions are guided by it (Time 2), such that the Time 1 person is effectively making decisions for someone else? If so, is that a problem? In this regard all three chapters struggle to find the correct framing for the decisions concerning disability in the context of the start and the end of life. I think it is fair to say that all three chapters have a somewhat ambivalent relationship with the idea of accuracy in information provision. Lemoine and Ravitsky examine Pennsylvania’s “Chloe’s Law,” which “require[s] healthcare practitioners to provide complete information to women who receive a prenatal diagnosis for [Down syndrome] so that they are better informed.” Case is critical, as many others have been, of Justice Kennedy’s opinion on so-called partial-birth abortion, that a woman availing herself of the procedure “will come to regret her choice to abort . . . with grief more anguished and sorrow more profound when she learns, only after the event, what she once did not know: that she allowed a doctor to pierce the skull and vacuum the fast-developing brain of her unborn child, a child assuming the human form.”3 Dresser writes “that people engaged in advance planning for dementia care need accurate and balanced information about the condition, including facts about the subjective experiences of people with dementia. More ‘insider’ views of this disability would help outsiders better understand what living with dementia could be like for them.” But all three seem to acknowledge, to varying extents, the idea that the challenges are not simply to deliver better information to the decision-makers. We might unpack this worry in two ways. First, that the search for a “neutral” body of information about what it is like to be or to parent a child with Down syndrome, or to be someone with dementia, is a fool’s errand; there are only multiple View-Masters, each of which is embedded in deeper commitments to what makes life valuable, how families should operate, what counts as having one’s dignity, etc. Second, even if we could be omniscient, there is a discontinuity – a “transformative experience” – involved in these decisions that makes knowledge insufficient; even if the View-Master can show us the most accurate picture of another life, there is so much more to being the person who lives it. As a result, all three chapters struggle with what the implications of such a view should be when it abuts against the claims of disability communities, reproductive rights advocates, and the needs of the healthcare system.

3

Gonzalez v. Carhart, 550 U.S. 124, 160 (2007).

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4 Abortion, the Disabilities of Pregnancy, and the Dignity of Risk Mary Anne Case

When abortion is discussed in the context of destigmatizing disability, it is usually in connection with the potential disabilities of the fetus. Disability rights activists increasingly encourage both lawmakers setting abortion policy and women contemplating abortion to think that a life with disabilities is worth living. In particular, they argue that a fetus diagnosed with Down syndrome, let alone one with a cleft palate, should not for that reason be aborted. While taking this line of argument into account, this chapter will shift the frame of reference to various ways in which the law and bioethics of abortion treat pregnant women as disabled. The examples presented come from the abortion jurisprudence of the United States and the Federal Republic of Germany. In the US Supreme Court decision of Gonzales v. Carhart,1 a decision about so-called late-term partial-birth abortions often undertaken after a diagnosis of fetal disability, Justice Kennedy’s emphasis on the human dignity at stake infamously did not center on the dignity of either the disabled fetus or the pregnant woman, but on the abstract dignity of the human being, which he saw as imperiled by allowing physicians to elect a method of abortion that could be seen to resemble childbirth too closely. Even more infamously, Kennedy used the opinion to validate the claim that a woman might come to regret her abortion and should therefore perhaps be legally disabled from obtaining it. Using concepts developed by disability rights advocates, I shall argue that what Kennedy is denying to women is the dignity of risk: even assuming arguendo that women are indeed likely to regret their abortion, treating them as incompetent to make this potentially regrettable decision denies them their full human dignity. German abortion law, which also centers on human dignity, treats pregnant women contemplating late-term abortions because of diagnosed fetal disabilities as disabled in a somewhat different way. German law presumes women carrying fetuses with disabilities might be under sufficient mental strain (or will be once their disabled child is born) that they can qualify for a legal abortion because of the pregnancy’s effect on their mental health. Although more of a legal workaround 1

550 U.S. 124 (2007).

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than a well-thought-out jurisprudential or bioethical position, this approach, like Kennedy’s, works to disable (pun intended) pregnant women, albeit in service of facilitating rather than preventing their access to a legal abortion. Kennedy’s retirement from the Supreme Court might call the continuing viability of his approach into question. But, in cases heading toward the Court and in the approach of his successor, there are worrisome echoes of Kennedy’s decision in Carhart. For example, two recent cert petitions deal with statutory schemes potentially inspired by Kennedy’s Carhart opinion. In addition, Justice Brett Kavanaugh, Kennedy’s replacement, wrote opinions during his tenure as a circuit court judge in cases whose fact patterns centered on particular disabilities faced by two groups of pregnant persons in government custody: pregnant minor immigrants in detention for unlawful entry into the United States and intellectually disabled pregnant women in the care of the District of Columbia Mental Retardation and Developmental Disabilities Administration (DCMRDDA). Like Kennedy in Carhart, Kavanaugh was disturbingly comfortable allowing government paternalistically to restrict the choices of those who are pregnant. Conceding that all pregnant women are vulnerable, and those carrying fetuses diagnosed with disabilities perhaps especially so, this chapter will argue that translating those vulnerabilities into the sort of legal disability that women labored under historically is not a productive way forward. Acknowledging that pregnant women should have the dignity of risk is one of several preferable approaches. I. VULNERABLE WOMEN AND VULNERABLE HUMANITY IN KENNEDY’S CARHART OPINION

When Planned Parenthood v. Casey2 reaffirmed the abortion right first recognized in Roe v. Wade,3 only Justice Stevens clearly stated that the “authority to make such traumatic and yet empowering decisions is an element of basic human dignity.”4 The joint opinion of Justices Kennedy, Souter, and O’Connor said of dignity only that analysis of abortion began but could not end with the recognition that decisions about procreation were “choices central to personal dignity and autonomy.”5 Rather than a woman’s dignity, the Casey joint opinion stressed her vulnerability, observing that the “mother who carries a child to full term is subject to anxieties, to physical constraints, to pain that only she must bear” and “her suffering is too intimate and personal for the State to insist, without more, upon its own vision of the woman’s role.”6 Although ultimately endorsing a woman’s right to choose, the Casey joint opinion expressed concern about the potential adverse effect of a choice to abort on 2 3 4 5 6

505 U.S. 833 (1992). 410 U.S. 113 (1973). Casey, 505 U.S. at 916 (Stevens, J., concurring). Id. at 851 (plurality opinion). Id. at 852.

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a woman’s “psychological well-being,” holding that Pennsylvania could mandate the provision of information about the condition of the fetus because this would “reduc[e] the risk” a woman might “discover later, with devastating psychological consequences, that her decision was not fully informed.”7 Fifteen years later, the seeds of doubt about abortion rights planted in the Casey joint opinion blossomed in Kennedy’s majority opinion in Gonzales v. Carhart.8 Kennedy often promoted dignity as a legal concept.9 But the dignity he sought to protect through the Partial-Birth Abortion Act10 was not that of women, or even of individual fetuses. It was a purely abstract idea of human dignity Kennedy saw as imperiled by an abortion method both he and Congress viewed as at once too gruesome and too closely resembling childbirth. According to Kennedy, the “Act expresses respect for the dignity of human life”11 because, as Congress declared: “Implicitly approving such a brutal and inhumane procedure by choosing not to prohibit it will further coarsen society to the humanity of not only newborns, but all vulnerable and innocent human life.”12 Kennedy additionally felt that learning the gruesomeness of the procedure might have an adverse effect on the pregnant woman. His concern was not that it might coarsen her but that should she later “com[e] to regret her choice to abort [she] must struggle with grief more anguished and sorrow more profound when she learns . . . what she once did not know: that she allowed a doctor to pierce the skull and vacuum the fast-developing brain of her unborn child, a child assuming the human form.”13 Whereas in Casey more fully informed consent was seen as the way to prevent the risk of such subsequent psychological harm, in Carhart the risk was seen to justify an outright ban on the potentially disturbing procedure. Kennedy’s avowed concern in Carhart for a pregnant woman’s future mental health is particularly ironic given the lack of such concern in the Act he upholds.

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Id. at 882. The Court noted that Pennsylvania law exempted physicians from providing otherwise required information about the fetus and the abortion procedure if it could be proven that “furnishing the information would have resulted in a severely adverse effect on the physical or mental health of the patient.” Id. at 883–84. Carhart, the doctor who lost this case, had earlier succeeded in having the US Supreme Court strike down an essentially identical state statute in Stenberg v. Carhart, 530 U.S. 914 (2000). While Kennedy, who dissented in Stenberg, claimed the different result stemmed from a better legislative record for the federal statute, a more plausible explanation is the replacement of Justice O’Connor with Justice Alito. For further discussion, see, e.g., Mary Anne Case, Of “This” and “That” in Lawrence v. Texas, 2003 S. Ct. Rev. 75 (2004). Partial-Birth Abortion Ban Act of 2003, Pub. L. No. 108–105, 117 Stat. 1202 (2003) (codified as amended at 18 U.S.C. § 1531 (2012)). Carhart, 550 U.S. at 157. That Kennedy is a Roman Catholic may contribute to his tendency to privilege the abstract idea of human dignity over the concrete concerns of individual humans. For further discussion see Mary Anne Case, Trans Formations in the Vatican’s War on Gender Ideology, 44 Signs 639, 653–54 (2019). Carhart, 550 U.S. at 157 (citing Partial-Birth Abortion Ban Act § 2(14)(N)). Carhart, 550 U.S. at 159–60.

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The ban contained within the Partial-Birth Abortion Act notoriously leaves no room for a health exception of any kind, no matter how severe the threat to a woman’s physical or mental health. The Act makes the procedure legal only when “necessary to save the life of a mother whose life is endangered by a physical disorder, physical illness, or physical injury.”14 The omission of threats to life arising from mental disorder seems an intentional effort to preclude even physicians treating seriously suicidal women from availing themselves of the procedure. Moreover, as Carol Sanger has argued, the depositions in Carhart suggest that a fully informed woman facing the late-term abortion of a wanted pregnancy might actually prefer that her fetus be delivered by the procedure the Act prohibits. She would then be presented with a relatively intact fetal body rather than “a set of disarticulated parts,” and her ability to hold, bid farewell to, and bury a dead “child assuming the human form” might enhance rather than jeopardize her subsequent mental health.15 The effect of personal testimonies of women who regret their abortions on Kennedy may have been one motivating factor for the growing number of public testimonials from women with the opposite perspective, who now write in poignant detail about the circumstances – including diagnoses of fetal disabilities incompatible with life – that led them sadly but decisively to abort a very much wanted pregnancy after the first trimester.16 II. KENNEDY’S LEGACY

Both aspects of Kennedy’s Carhart opinion criticized in this chapter have inspired subsequent antiabortion legislation. Kennedy’s suggestion that abortion might lawfully be regulated in the interests of preventing the disabling effects of what Sandra Cano’s Carhart amicus brief called “post-abortion syndrome”17 encouraged those backing abortion restrictions allegedly protective of women.18 And his view that abortion restrictions could be justified by concerns for preserving abstract 14 15 16

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18 U.S.C. § 1531(a) (2012), cited in Carhart, 550 U.S. at 141 (emphases added). Carol Sanger, About Abortion: Terminating Pregnancy in Twenty-First-Century America 151 (2017). See, for example, Natalia Megas, The Agony of Ending a Wanted Late-Term Pregnancy: Three Women Speak Out, Guardian (September 20, 2017), www.theguardian.com/society/2017/apr/18/late-termabortion-experience-donald-trump. Brief for Sandra Cano et al. as Amici Curiae in Supporting Petitioner, Carhart, 550 U.S. 124 (2007) (No. 05–380). In this brief, explicitly inspired by the suggestion in Casey that there could be “devastating psychological consequences,” id. at 22, if a woman’s decision to abort were not fully informed, women who had abortions offered first-person accounts of the depression, drug addiction, suicidality, and other disabling psychological effects they attributed to the aftermath of their decision to abort. For examples of such legislation, see Reva Siegel, The New Politics of Abortion: An Equality Analysis of Woman-Protective Abortion, 2007 U. Ill. L. Rev. 991, 992.

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human dignity gave rise, for example, to laws mandating the dignified disposal of fetal remains. Both sets of issues recently came before the US Supreme Court in cert petitions arising out of challenges to Indiana laws. In one case, whose cert petition is still pending, the Seventh Circuit had struck down as an undue burden on abortion rights a mandatory ultrasound followed by a mandatory reflection period because, although “protecting maternal psychological health is . . . a legitimate state interest,” there was no evidence that “having an ultrasound eighteen hours before an abortion leads to more favorable psychological outcomes.”19 In the other, the Seventh Circuit had held that there was no rational basis to “require abortion providers to dispose of aborted fetuses in the same manner as human remains”; on this point the Supreme Court summarily reversed, but in doing so stressed that only the question of a rational basis for the statute, not any possible undue burden it might place on abortion rights, had been litigated in the case below.20 Additionally, the Seventh Circuit had struck down as contrary to Casey’s holding that previability abortions could be neither prohibited nor unduly burdened a provision of Indiana law prohibiting anyone from performing a previability abortion “if the person knows that the pregnant woman is seeking” an abortion “solely because of the sex, . . . race, color, national origin, or ancestry of the fetus” or “solely because the fetus has been diagnosed with . . . or has a potential diagnosis of Down syndrome . . . or any other disability.”21 In denying cert on this latter question, the Court again left the ultimate question of constitutionality open, saying it would wait until hearing from additional courts of appeals.22 Thus, the issues presented in these Indiana cases will likely return to the Court sooner or later. III. KENNEDY’S SUCCESSOR AND PREGNANT WOMEN AS CHILDREN AND IMBECILES 23

After Brett Kavanaugh’s nomination to the Supreme Court, those interested in ascertaining his approach to abortion focused almost exclusively on a single case

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20 21

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Planned Parenthood of Ind. & Ky., Inc. v. Comm’r of the Ind. State Dep’t of Health, 896 F.3d 809, 830 (7th Cir. 2018). See Box v. Planned Parenthood of Ind. & Ky., Inc., 587 U.S. __ (2019). Id. The statute defined “potential diagnosis” as “the presence of some risk factors that indicate that a health problem may occur,” Ind. Code § 16–34-4–3, and “any other disability” as “any disease, defect, or disorder that is genetically inherited,” including both physical and mental disabilities. Ind. Code § 16–34-4–1. See Box v. Planned Parenthood of Ind. & Ky., Inc., 587 U.S. __ (2019). Cf. Barbara A. Brown, Thomas I. Emerson, Gail Falk, & Ann E. Freedman, The Equal Rights Amendment: A Constitutional Basis for Equal Rights for Women, 80 Yale L.J. 871, 872 (1971) (“Courts classified women with children and imbeciles, denying their capacity to think and act.”)

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that had come before him as a circuit judge, Garza v. Hargan.24 JD, the Jane Doe plaintiff in that case, was one of a number of pregnant undocumented immigrant minors in federal custody whom the then head of the Office of Refugee Resettlement, Scott Lloyd, an implacable opponent of abortion, sought by all means in his power to prevent from aborting their pregnancies.25 As to JD, after sending her to pro-life counseling and notifying her allegedly abusive mother, he refused to allow her to leave detention to go to a clinic for an abortion, notwithstanding that her guardian ad litem and the government contractor detaining her were prepared to handle all logistics.26 The lower court’s order that JD be given access to an abortion was stayed by a panel of the DC Circuit including Kavanaugh in order to allow the government more time to seek a sponsor into whose custody it could release JD.27 But the DC Circuit en banc promptly dissolved the stay, and JD obtained her abortion shortly thereafter. Kavanaugh dissented, claiming that the “en banc majority ha[d] badly erred” by failing to follow “the Supreme Court’s many precedents holding that the Government has permissible interests in favoring fetal life, protecting the best interests of a minor, and refraining from facilitating abortion.”28 Unlike his colleague Judge Henderson, who also dissented, but on the grounds that unlawful immigrants had no relevant constitutional rights, Kavanaugh couched his dissent in paternalistic tones of concern for JD’s welfare, stressing that JD was “not an adult but a minor,” “alone and without family or friends,” faced with “a major life decision,”29 and, if “transferred to her immigration sponsor” would be “in a better place when deciding whether to have an abortion.”30 Kavanaugh’s approach ignores the facts.31 As concurring Judge Millett stressed, JD had already been waiting seven weeks for a sponsor with none on 24 25

26 27

28 29 30 31

874 F.3d 735 (D.C. Cir. 2017). Lloyd demanded a weekly spreadsheet listing every pregnant underage girl in the Office of Refugee Resettlement’s custody and insisted that no action concerning these girls, from medical appointments to meetings with lawyers, could take place without his personal approval. See Tessa Stuart, The Health Department’s Christian Crusade, Rolling Stone (October 24, 2018), www.rollingstone.com/politics/ politics-features/health-and-human-services-abortion-policies-738904/. His tactics included attempting to “reverse” a two-step medical abortion by delaying the provision of the second necessary drug, and even personally meeting with pregnant girls in custody to dissuade them from seeking to abort. See Hannah Levintova, The Trump Official Overseeing Migrant Girls Health Care Once Wrote He Couldn’t Support Abortion for Any Reason, Mother Jones (August 22, 2018), www.motherjones.com /politics/2018/08/scott-lloyd-essay-orr-pregnant-migrants-abortion/. See Garza, 874 F.3d at 740 (D.C. Cir. 2017) (Millett, J., concurring). Sponsors, who fulfill a role akin to foster parents, are ordinarily selected only from relatives or others with whom the minor has a preexisting relationship, undergo rigorous background checks, and, if approved, assure the minor’s appearance at subsequent immigration hearings. See id. at 739. Id. at 752 (Kavanaugh, J., dissenting). Id. at 754. Id. at 755. Holding out the prospect, however unrealistic, that a sponsor would timely appear to take JD out of government custody allowed Kavanaugh to avoid taking a position on the question of her abortion rights, which was in his interests as a potential Supreme Court nominee. On the Supreme Court,

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the horizon,32 and she was already fifteen weeks pregnant, rapidly approaching the point where termination would become legally and practically more cumbersome. The only option the government was offering JD was that she could self-deport to her home country where abortion was illegal. And the paternalistic arguments for delaying until a sponsor could be found were inventions of Kavanaugh. “The only value of sponsorship identified by the government was that sponsorship, like voluntary departure from the United States, would get JD and her pregnancy out of the government’s hands.”33 Like Kennedy’s Carhart opinion, Kavanaugh’s dissent appears solicitous of an unwillingly pregnant person while in reality denying her the dignity of respecting her choices. Not only had JD already decided that an abortion was in her best interests, a Texas judge had affirmed her capacity to make this determination for herself.34 In declining to release her for a clinic appointment, the federal government was “simply supplanting her legally authorized best interests judgment with its own categorical position against abortion.”35 By allowing JD to effectuate her decision despite Kavanaugh’s paternalistic efforts to delay, the DC Circuit afforded her “a modicum of the dignity, sense of self-worth, and control over her own destiny that life seems to have so far denied her.”36 Kavanaugh’s opinion in Garza presents the question of whether he is properly described not as pro-life but as antichoice. The evidence for calling him antichoice is strengthened by his opinion in another, much less discussed case involving Jane Doe plaintiffs in government custody. These plaintiffs were intellectually disabled women in the care of DCMRDDA who alleged that elective surgeries had been performed on them without any attempt to ascertain their wishes. For two of the named class representatives, Jane Does I and III, the elective surgery in question had been abortion. These abortions had been performed “allegedly without either consulting with [the pregnant woman’s] legal representative or obtaining substituted judgment from a court,” and, in Jane Doe III’s case, notwithstanding that “according to plaintiffs, [she had] decided to carry the pregnancy to term.”37 Because the regulations had in the interim been amended to require a court order before

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Kavanaugh appears to have continued this tactic of positing an unrealistic factual scenario to avoid straightforwardly applying or forthrightly calling for an overruling of abortion case law. See June Med. Servs. V. Gee, 139 S. Ct. 663, 663–64 (2019) (Kavanaugh, J., dissenting) (claiming no stay of a requirement that those performing abortions obtain admitting hospital admitting privileges was necessary unless and until those privileges were denied, despite all parties’ agreement that forced closure of clinics for want of privileges would be contrary to existing precedent). Indeed, JD “remained in ORR custody for months after her abortion.” Garza v. Hargan, 304 F. Supp. 3d 145, 165 n.7 (D.D.C. 2018). Garza, 874 F.3d at 739 (Millett, J., concurring). See id. at 736. Id. Id. Does I through III v. District of Columbia, 232 F.R.D. 18 (2005), rev’d in part, vacated in part sub nom. Doe ex rel. Tarlow v. District of Columbia, 489 F.3d 376 (D.C. Cir. 2007).

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“abortion, sterilization or psycho-surgery” could be performed on the relevant class of patients,38 the constitutionality of the abortions performed on Jane Does I and III was not before the panel for which Kavanaugh wrote denying injunctive relief. But, in finding that the “plaintiffs’ constitutional claims are meritless,”39 Kavanaugh gave no indication his approach would be any different were abortion still one of the procedures in question. A careful reading of Kavanaugh’s language confirms that he seems no more willing to protect those in government custody from abortions than from forced continuation of unwanted pregnancies.40 In a 2017 speech, Kavanaugh praised Justice Rehnquist’s limiting approach to unenumerated rights in his Roe dissent and in Washington v. Glucksberg,41 while observing, “of course, the Glucksberg approach to unenumerated rights was not consistent with the approach of the abortion cases.”42 In Doe ex rel. Tarlow, Kavanaugh uses the authority of Glucksberg to hold that “plaintiffs have not shown that consideration of the wishes of a never-competent patient is ‘deeply rooted in this Nation’s history and tradition’ and ‘implicit in the concept of ordered liberty.’”43 As to history and tradition, Kavanaugh is unfortunately correct. There is a long history of disabling women, children, and imbeciles from having input into decisions, even when what is in question is their control over their bodily integrity and reproductive capacity. In explicitly endorsing history and tradition, Kavanaugh is implicitly reaffirming Buck v. Bell,44 in which Justice Holmes upheld the involuntary sterilization of Carrie Buck, a young, allegedly mentally disabled woman in state custody. But women in general have over time emerged from the legal disabilities they labored under, such that, history and tradition to the contrary notwithstanding, their liberty and equality under law are now seen as “implicit in the concept of ordered liberty.”45 As the Casey plurality affirmed with respect to state control over abortion decisions, a state can no longer “insist, without more, upon its own vision of the woman’s role, however dominant that vision has been in the course of our history and our culture.”46 38 39 40

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Doe ex rel. Tarlow, 489 F.3d at 379 (citing D.C. Code § 21–2211). Id. at 384. As Samantha Crane, legal director of the Autistic Self-Advocacy Network, observed about Kavanaugh’s decision concerning the intellectually disabled D.C. women, “it really makes it clear . . . that the issue isn’t abortion. It’s about controlling people.” See Amanda Marcotte, Brett Kavanaugh’s Disturbing Abortion History: He Ruled Against Women Who Were Forced to Abort, Salon (August 20, 2018), www.salon.com/2018/08/20/brett-kavanaughs-disturbing-abortion-history-he-ruledagainst-women-who-endured-forced-abortions/. 521 U.S. 702 (1997). Brett Kavanaugh, Judge, U.S. Court of Appeals for the D.C. Circuit, From the Bench: Judge Brett Kavanaugh on the Constitutional Statesmanship of Chief Justice William Rehnquist, 12 (September 18, 2017), www.aei.org/wp-content/uploads/2017/08/from-the-bench.pdf. Doe ex rel. Tarlow, 489 F.3d at 383 (citing Glucksberg, 521 U.S. at 720–21). 274 U.S. 200 (1927). Glucksberg, 521 U.S. at 721. Planned Parenthood v. Casey, 505 U.S. 833, 852 (1992).

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Just as there is reason to doubt that Carrie Buck was in any way mentally disabled,47 so too may there be reason to reconsider Kavanaugh’s assumption that there would be no point in consulting the intellectually disabled about their healthcare preferences. Liz Weintraub, herself intellectually disabled, testified in opposition to Kavanaugh’s Supreme Court confirmation, telling Congress his opinion in Doe “completely disrespected people’s rights and their freedom of choice because of their disability.”48 Invoking the motto “nothing about us without us,” she observed that “everyone, regardless of their abilities, needs support and help to make decisions,”49 but no one should have to fear, as she now did, “that some people will try to make decisions without me,”50 without her “even get[ting] a chance to say what [she] wanted.”51 Although Kavanaugh’s opinion for the DC Circuit overturned injunctive relief for the class represented by Jane Does I and III, the District Court declined to dismiss the two women’s individual claims that “that their rights to have children were unlawfully infringed” by abortions performed on them without “adequa[te] procedural protections,” and the plaintiffs subsequently received damages in settlement of their claims.52 IV. GERMAN ABORTION LAW’S LEAP FROM FETAL TO MATERNAL DISABILITY

As I have previously explained, German abortion law has been a mirror image of that in the United States since the 1970s.53 At about the time of Roe v. Wade, the German Federal Constitutional Court overturned an attempt to liberalize abortion law, holding that the state’s obligation to hold human dignity inviolable required it to criminalize abortion unless one of four so-called indications was present; these included threats to the mother’s life or health, a pregnancy resulting from a criminal act, a fetus suffering from severe birth defects (the so-called embryopathic indication), and any other circumstance in which it would be too much to expect the woman to bring the pregnancy to term. At about the time of Casey, the Constitutional Court allowed abortion in the first twelve weeks of pregnancy to be decriminalized provided the pregnant woman first took part in state-sponsored 47

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49 50 51 52 53

See, for example, Paul Lombardo, Three Generations, No Imbeciles: New Light on Buck v. Bell, 60 N. Y.U. L. Rev. 30 (1985). Nomination of the Honorable Brett M. Kavanaugh to be an Associate Justice of the Supreme Court of the United States: Hearing Before the S. Comm. on the Judiciary, 115th Cong. 3 (2018) (statement of Elizabeth Weintraub, Senior Advocacy Specialist, Association of University Centers on Disabilities), www.judiciary.senate.gov/imo/media/doc/Weintraub%20Testimony.pdf. Id. at 4. Id. at 4. Id. at 3. Doe v. District of Columbia, 920 F. Supp. 2d 112, 126 (D.D.C. 2013). See Mary Anne Case, Perfectionism and Fundamentalism in the Application of the German Abortion Laws, 11 F.I.U. L. Rev. 149 (2015).

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counseling designed to “encourage the woman to continue the pregnancy and open up perspectives to her for a life with the child.”54 Shortly after substituting a counseling regime for an indications regime, German law in the 1990s subsumed what had been the embryopathic indication under the medical indication, which in the revised statute made abortion not unlawful if: Considering the present and future living conditions of the pregnant woman, the termination of the pregnancy is medically necessary to avert a danger to the life or the danger of grave injury to the physical or mental health of the pregnant woman and if the danger cannot reasonably be averted in another way from her point of view.55

This meant, in effect, that it was no longer the fetal disabilities that authorized the abortion of a fetus with diagnosed birth defects, but the presumed effect of those disabilities on the health of the pregnant woman. As numerous legal, medical, and bioethical commentators pointed out, this new statutory workaround led to anomalies in the overall statutory scheme. For example, although counseling followed by a waiting period was required of women seeking a first trimester elective abortion, no such requirements were initially imposed on women whose abortion was motivated by a fetal disability diagnosis; also, because their abortions were seen as medically necessary, there was no limit to how late in the pregnancy they could obtain them. The result was that, despite an overall decline in medically indicated abortion, the number of such abortions undertaken in the second and third trimester rose. Often these were undertaken very shortly after the pregnant women received the results of prenatal diagnostic tests on the fetus and without specific genetic or psychological counseling.56 Disability rights advocates and opponents of abortion were not the only ones to raise objections. I have myself written in opposition to the counseling requirement for first trimester abortions in Germany.57 But even I think that if ever counseling and a mandatory period for reflection were likely to be helpful, it might be in the case of women presented unexpectedly, often late in very much wanted pregnancies, with a diagnosis of fetal disability. Information ranging from a detailed medical prognosis by specialist physicians, to the experiences of children with similar disabilities and their parents, to accounts of services and subsidies available to the parents and the child might help facilitate a woman’s transition from shock and

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BVerfG, 2 BvF 2/90, 2 BvF 4/92, and 2 BvF 5/92, May 28, 1993, II. 3 (1). Quotations are taken from the official English translation, available at www.bundesverfassungsgericht.de/SharedDocs/ Entscheidungen/EN/1993/05/fs19930528_2bvf000290en.html. Strafgesetzbuch [StGB] [Penal Code], § 218a, para. 2, translated in Michael Bohlander, Principles of German Criminal Law 186 (2009). See Daniela Reitz and Gerd Richter, Current Changes in German Abortion Law, 19 Cambridge Q. Healthcare Ethics 334, 336–38 (2010). See Case, supra note 53, at 157–60.

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horror at the diagnosis to a well-considered decision whether to continue or terminate the pregnancy. For more than a decade, Germans faced competing proposals for legislative reform. The German Society of Obstetrics and Gynecology sought to give more control to doctors, and each of the major political parties offered its own legislative proposal for psychosocial counseling. Not until 2009, however, were amendments to the German Pregnancy Conflict Act enacted. These provided, inter alia, for (a) the development and distribution to affected women of informational material on life for and with children with a mental or physical handicap, the right to psychosocial counseling, and support groups for and of disabled persons and their parents; (b) mandatory counseling by a physician and an entitlement to further psychosocial counseling on request; and (c) a mandatory waiting period of at least three days between fetal diagnosis and termination of pregnancy, absent a more imminent danger to the mother’s life or health.58 V. THE ENABLING OF PREGNANT WOMEN AND THE DIGNITY OF RISK

Somewhat paradoxically, German law appears to enable a pregnant woman by requiring her to acknowledge herself disabled; only if her physical or mental health is in grave danger may she abort a fetus diagnosed with disabilities, but while a physician must sign off on the decision, the woman must also herself determine whether “the danger cannot reasonably be averted in another way from her point of view.”59 This is a major improvement on Kennedy’s approach to a pregnant woman’s decision making, but it has its limitations. While it is perfectly appropriate for a pregnant woman to take into consideration the mental stress that might be placed on her as the mother of a disabled child, first-person accounts by affected women suggest that, for many, the principal concern is not their own potential suffering but that of their child. In a survey of German women facing the question whether to abort following an adverse prenatal diagnosis, the overwhelming majority (94.6 percent) considered “their baby’s quality of life” to be the most important factor; “the effect that having or not having the baby would have on the woman” was, for most, a secondary consideration.60 58 59

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See Reitz & Richter, supra note 56, at 340. Strafgesetzbuch [StGB] [Penal Code], § 218a, para. 2, translated in Bohlander, Principles of German Criminal Law, at 186. J. Tsiantis, Eve-Marie Engels, & Marianne Leuzinger-Bohleber, The Janus Face of Prenatal Diagnostics: A European Study Bridging Ethics, Psychoanalysis, and Medicine 186 (2008). Other factors considered were “whether the baby would die, the woman’s relationship to the unborn, and what the partner wanted, followed by the effect on the family, the amount of social support, religious beliefs, and how people would respond.” Id.

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The paradigmatic case put forward by disability rights and antiabortion advocates for refraining from abortion when fetal disabilities are diagnosed may be that of a child with Down syndrome,61 whose prospects are for a relatively long and painfree, albeit intellectually disabled, life. But a growing number of first-person accounts, in both Germany and the United States, of pregnant women facing the decision whether to abort a disabled fetus focus on disabilities incompatible with life – of babies that will die shortly after birth or after a few months or years of constant suffering. It is precisely as mothers, not as persons whose mental health is at risk, that many women make the choice to spare their child – not necessarily themselves – such pain. It is also as mothers that such women take into account the effect of continuing the pregnancy on their other children, including the healthy children they hope to conceive after their abortion or may already be carrying simultaneously with the disabled fetus.62 In a way, these women are offering to the children they are carrying what Kavanaugh’s opinion in Doe denied the intellectually disabled plaintiffs before him – the opportunity, even if the directly affected disabled individuals are concededly not in a position to make their own decisions, to have the decision about their future made by an informed person who cares about them individually, such as a family member, rather than by the impersonal rubber stamp of a medical bureaucrat. Acknowledging that pregnant women might be reasoning as mothers out of love for their children in making particular abortion decisions is quite different from insisting that they must inevitably do so, as Kennedy appears to do in Carhart.63 And what German law offers a pregnant woman – namely, the right to an individualized decision whether the risks to her psychological health are bearable – Kennedy’s Carhart opinion denies her. The argument against Kennedy’s disabling a pregnant woman from making her own choices can easily be made in feminist terms, but it can also be made as a matter of disability rights and in Kennedy’s favorite idiom, the language of dignity. Both feminists and disability rights activists have set their faces against paternalism, the thread that runs through Kennedy and Kavanaugh’s abortion decisions. But it is disability rights advocates, with their concept of the dignity of risk,64 who offer the most pointed rejoinder to Kennedy and Kavanaugh. This concept allows one to accept (at least arguendo) the assumption that the pregnant 61

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In Germany, the most widely publicized example was that of Tim, the so-called Oldenberg baby, who lived twenty-one years in the care of devoted foster parents after a Down syndrome diagnosis led his mother to schedule, at twenty-five weeks of pregnancy, an abortion both she and her doctors initially expected would lead to his immediate death. See, for example, Derek Scally, German Man Who Survived Abortion Dies Aged 21, Irish Times (January 9, 2019), www.irishtimes.com/news/world/ europe/german-man-who-survived-abortion-dies-aged-21-1.3752247. See, for example, Megas, supra note 17 (including the story of one mother who aborted a disabled fetus who was compromising the survival of a twin in utero). See Carhart v. Gonzales, 550 U.S. 124, 159 (2007). Sam Bagenstos has suggested that the feminist campaign against sex-specific labor legislation may have been the precursor to antipaternalistic argument about the dignity of risk. See Samuel L. Bagenstos, Law & the Contradictions of the Disability Rights Movement 91–92 (2009).

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woman who aborts may come to regret her choice and risks suffering disabling psychological consequences when she does, and nevertheless to argue that this risk is no reason to preclude her from choosing. As advocates for the dignity of risk insist, “Without the possibility of failure, the disabled person lacks true independence and the ultimate mark of humanity, the right to choose for good or evil.”65 So does the pregnant woman.

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Gerben DeJong, Defining and Implementing the Independent Living Concept, in Independent Living for Physically Disabled People 4, 20 (Nancy M. Crewe & Irving Kenneth Zola eds., 1983). See also Robert Peske, The Dignity of Risk and the Mentally Retarded, 10 Mental Retardation 24 (1972) (“Overprotection endangers the retarded person’s human dignity and tends to keep him from experiencing the normal taking of risks in life which is necessary for normal human growth and development.”)

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5 The Down Syndrome Information Act and “Mere Difference”: Redefining the Scope of Prenatal Testing Conversations? Marie-Eve Lemoine and Vardit Ravitsky1

Since the very introduction of amniocentesis, prenatal testing for Down syndrome (DS) has raised objections from disability rights scholars and activists. The most wellknown objection, the expressivist argument, claims that prenatal testing and selective terminations send a hurtful message to people living with the conditions tested for. Another claim is that selective abortion is a discriminatory practice because it lets one trait stand for the whole in justifying terminating an otherwise wanted pregnancy.2 Disability rights advocates have also raised consequentialist concerns, such as the potential effects of an expected reduction in the populations living with the tested conditions, including a reduction in the perceived need for providing support to families and research directed at improving care and quality of life.3 They also include the idea of a loss of social and moral benefits that society gains from diversity and from dealing with vulnerability of various forms.4 In Chapter 2 of this volume, Ani Satz refers to pregnancy termination for DS as an act of normalization that obscures the need and possibility of raising awareness and maximizing function in ways that are considered “atypical.” Based on these concerns, disability rights literature and activism, coupled with feminist literature and activism, have strongly contributed to a shift away from a public health narrative for prenatal testing to a reproductive autonomy narrative. This means that prenatal testing is no longer presented as a means to reduce the incidence of DS. Rather, it is now based on a desire to provide pregnant women and expecting couples with more information to promote informed choice.5 In this 1

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4

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The authors would like to thank Professors Arthur Caplan, Diane Paul, and Govind Persad for their helpful comments on earlier versions of this chapter. See Erik Parens & Adrienne Asch, Special Supplement: The Disability Rights Critique of Prenatal Genetic Testing Reflections and Recommendations, 29 Hastings Center Report S1 (1999). See, for example, Deborah Kaplan, Prenatal Screening and Its Impact on Persons with Disabilities, 8S Fetal Diagnosis & Therapy 64 (1993). See generally Rosemarie Garland-Thomson, The Case for Conserving Disability, 9 J. Bioethical Inquiry 339 (2012). See, for example, Mianna Meskus, Personalized Ethics: The Emergence and the Effects in Prenatal Testing, 7 BioSocieties 373, 381 (2012).

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framework, expecting couples make reproductive decisions about DS based on their understanding of what DS is and might entail for the future child, their existing children, and themselves as parents. Additional concerns within this reproductive autonomy framework relate to negative (mis)conceptions about disability and life with disability.6 These common (mis)conceptions are in line with the intuitive notion of disability as a difference that is inherently bad, and thus necessarily entails negative consequences for well-being. However, some disability advocates hold a view that disability, including Down syndrome, could be seen as a “mere difference” with respect to well-being, if unfavorable social conditions were eliminated. In this view, disability, in and of itself, does not have a negative impact with regard to well-being. Disability rights literature and activism have been involved in the adoption of the DS Information Act (DSIA) by various states.7 In essence, the DSIA aims to ensure that health professionals who offer prenatal care provide complete information about DS, including its positive aspects.8 As such, the Pennsylvania version of the DSIA, known as “Chloe’s Law,” was criticized for threatening neutrality in counseling.9 Of note, Louisiana, Texas, and Indiana have included a disposition stating that abortion shall not be mentioned as an acceptable option in case of a positive diagnosis. We shall make clear that we oppose such dispositions, as we believe all relevant information should be made available. However, this paper explores the ethical considerations with regard to representations of Down syndrome in prenatal testing conversations and documentation, so we leave this issue for a later critical piece. This chapter describes the idea of DS as a mere difference, its strengths and shortcomings. It continues with an assessment of the relationship between the DSIA and neutrality in counseling. It then addresses what the mere difference view can realistically entail for the application of the DSIA based on the available empirical evidence. We conclude with a reiteration of societal requirements for fully embodied free and informed choice. I. DOWN SYNDROME AS A MERE DIFFERENCE

Chambers claims that behind the disability rights critique of prenatal testing lies the idea that DS is not (or does not need to be) a bad difference.10 In The Minority Body: 6

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See Chris Kaposy, A Disability Critique of the New Prenatal Test for Down Syndrome, 23 Kennedy Inst. of Ethics 299, 304–09 (2013). See generally Mark W. Leach, The Down Syndrome Information Act: Balancing the Advances of Prenatal Testing Through Public Policy, 54 J. Intellectual and Dev. Disability 84 (2016). H.B. 2111, Reg. Sess., Co-Sponsorship Memorandum (Pa. 2014). See Arthur L. Caplan, Chloe’s Law: A Powerful Legislative Movement Challenging a Core Ethical Norm of Genetic Testing, 13 PLoS Biologique 1 (2015). See Katherine Lindsey Chambers, Choosing Our Children: Role Obligations and the Morality of Reproductive Selection (2016) (PhD dissertation, UCLA), available at https://escholarship.org/uc/ item/02d5x49x.

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A Theory of Disability, Barnes chooses to restrict her analysis to physical disabilities, leaving open the possibility of applying it to intellectual disability.11 To the best of our knowledge, DS advocates have not made explicit claims for DS as a mere difference. However, some of their messages in public and academic arenas convey this idea. For instance, the Canadian Down Syndrome Society’s (CDSS) definition of DS suggests that DS is a mere difference for the individual,12 and the Welcome to Holland poem (which is widely distributed in support groups) suggests that parenting a child with DS is merely a different experience than parenting a neurotypical child.13 Philosophical accounts of disability, such as the mere difference account, are interested in what disability inherently means for well-being. They are not interested in the actual impact of disability on well-being in the current state of our society, which is often deemed unfair and unaccommodating of people with disability.14 The mere difference account could thus be consistent with people with disabilities being empirically shown to be less well-off, but it considers this to be due to unfair social circumstances, as opposed to disability itself. It is also important to distinguish the “mere difference or bad difference” debate that is interested in well-being from the social and biomedical accounts of disabilities that are interested in function. The mere difference view is consistent with disabled people having objectively fewer options with regard to functional performance, the point being that this does not have to negatively affect their well-being. Of note, these accounts usually only consider what disability means for the well-being of the disabled person, not for that of the family. Following Barnes, Stoner provides an account of the mere difference view of disability that he states includes most cases of DS.15 He provides examples of dimensions of life that significantly matter to well-being, including “being invested in projects you’re passionate about, being in close, caring relationships with other people, being active in your community, facing achievable challenges, being safe, warm and dry.”16 Note that the notion of productivity, when present, is highly relative and subjective, since projects and challenges only have to measure up to the person’s own potential to fulfill their significance to well-being. Whether someone performs well in an objectively defined competitive system is not considered. 11 12

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Elizabeth Barnes, The Minority Body, 4 (1st ed. 2016). See Positioning of the Canadian Down Syndrome Society, https://cdss.ca/about-cdss/positioning/ (last visited August 16, 2018) (hereinafter CDSS Positioning). See also Rhonda Grant & Krista Flint, Prenatal Screening for Fetal Aneuploidy: A Commentary by the Canadian Down Syndrome Society, 29 J. Obstetrics Gynaecology Can. 580, 581 (2007). See Emily Perl Kingsley, Welcome to Holland (1987), available at www.ndss.org/resources/a-parentsperspective/. See, for example, Barnes, supra note 10, at 2; Chambers, supra note 9; Ian Stoner, Ways to Be Worse Off, 93 Res Philosophica 921, 923 (2016). Id. at 921–49, 936. Id.

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In Stoner’s view, well-being requires an abundant metaphorical cornucopia of possible projects or engagements from which individuals freely select goods to pursue. Given two cornucopias that are so plentiful that it would be impossible for an individual to pursue all the options they contain in one lifetime, it becomes pointless, with regard to expected well-being, to compare their size and content. This is because they both provide immense and invaluable potential for well-being. This means that able-bodied persons may have options that are absent from disabled persons’ cornucopia, but this does not mean the latter have less potential for wellbeing, so long as they also have a (differently filled) plentiful cornucopia of possibilities.17 This view suggests that if people with DS are considered to have abundant cornucopias, the natural tendency we have as prospective parents to compare their lives to life as we know it as neurotypical people yields unnecessarily negative answers. In this view, having different or even fewer prospects for functional performance does not have to equate with having lesser potential for well-being. Stoner offers a distinction between two ways of being “worse off” with regard to wellbeing. A person who is disabled but yet has access to a plentiful cornucopia is “not big-W worse off”18 than any able-bodied peer. Some people oppose neutral views of disability on the theory that most disabled people would prefer to cure their disability if given an effective, safe, and affordable treatment. Stoner’s account is not inconsistent with this belief, as it admits that while disability does not have to make a person “big-W worse off,” it is reasonably expected to make a person “little-w worse off”19 in at least some dimension of their lives. Being “little-w worse off” encompasses transient situations that cause “frustration, irritation, annoyance [or] pain”20 that one could do away with, but that do not, in the grand scheme of things, prevent them from acquiring numerous correlates of a good life. Thus, this account of the mere difference admits that even in a fair and fully accommodating society, disabled individuals may still be worse off in some ways, but this level of being worse off would not significantly affect their well-being. Following this view, DS as a disability (absent unjust and unaccommodating social circumstances) inherently makes a person little-w worse off but not big-W worse off. It leaves an individual with a plentiful, albeit differently filled, cornucopia of possible life goods. It is therefore considered to be a mere difference with regard to things that make a person big-W worse off, and a bad difference with regard to things that make a person little-w worse off.21 A possible shortcoming of Stoner’s analysis of DS as a mere difference is that he takes for granted that DS does not inherently or necessarily cause physical pain, and that it does not significantly reduce life expectancy.22 It is unclear whether this is due 17 18 19 20 21 22

Id. at 931. Id. at 932. Id. Id. at 931. Id. at 935. Id. at 922.

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to lack of knowledge about the various complications that often accompany DS, or due to a subjective and arbitrary judgment that the pain they cause and the associated reduction in life expectancy, or the probability of these things occurring, is not significant to the same extent as they would be in the case of Tay-Sachs disease or cystic fibrosis, for example. These pain and life expectancy considerations are central to Andric and Wundish’s rebuttal of DS as a mere difference. For these authors, since it flows from basic common sense that pain and early death must be considered as “bads” associated with DS, it follows that for DS to be considered a mere difference, the “goods” associated with it must be significant enough to outweigh pain and early death.23 It is difficult to objectively enunciate goods related to DS that can be thought to be generalizable. Individuals with DS are often described as being particularly cheerful, affectionate, and overall very happy. However, it is considered offensive and misleading to presume that any specific individual with DS has a predisposition to a good mood that neurotypical people may not have.24 In addition, it is unclear who would have the epistemic authority to determine which bads outweigh which goods (or vice versa) for a given individual. However, under Stoner’s view, bads do not have to be outweighed by goods to be dismissed as things that make a person little-w worse off and not big-W worse off. They only have to be subjectively deemed “less than significant.” “Subjective” is important here because quality of life quantification systems would automatically classify DS as a bad difference due to pain and reduced life expectancy. This type of research is criticized by the disability community for not capturing the quality of life of disabled individuals as perceived by themselves, considering processes of resilience and adaptation as well as worldviews from their unique perspectives.25 Yet, it is a self-assessment of one’s life conditions based on one’s own criteria – and not based on externally defined standards – that defines a person’s subjective life satisfaction and well-being.26 Therefore, only people living with DS are qualified to determine whether the pain they endure (or not) due to medical complications and their shorter life expectancy makes them big-W or little-w worse off, and individuals are only qualified to make this arbitration for themselves.27 23

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Vuko Andric´ & Joachim Wu¨ndisch, Is It Bad to Be Disabled? Adjudicating Between the “Mere Difference” and the Bad-Difference Views of Disability, 9 J. of Ethics & Soc. Phil. 1, 10 (December 2015). See CDSS Positioning, supra note 11. See, for example, Priscilla Alderson, Down’s Syndrome: Cost, Quality and Value of Life, 53 Soc. Sci. & Med. 627 (2001). See also Maureen Gillman et al., Life History or ‘Case’ History: The Objectification of People with Learning Difficulties Through the Tyranny of Professional Discourses, 12 Disability & Soc’y 675, 676 (1997). See, for example, Ed Diener et al., The Satisfaction With Life Scale, 49 J. Personality Assessment 71 (1985). See Paul. S. Miller & Rebecca L. Levine, Avoiding Genetic Genocide: Understanding Good Intentions and Eugenics in the Complex Dialogue Between the Medical and Disability Communities, 15 Genetics in Med. 95, 100 (2013).

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Hence, either DS cannot be considered as a mere difference because of the associated pain and reduced life expectancy (Andric and Wundish’s view), or these can be subjectively determined to be outweighed by goods, or not to be significant enough to undermine a mere difference status in light of a big-W sense of being worse off (Stoner’s view). Thus, it is plausible that in a fair and accommodating society, DS, for some individuals but perhaps not all, could be considered to have a less than significant impact on well-being, and thus to be a mere difference. However, assessing the way in which this conceptual account meets reality is of utmost importance for prenatal testing conversations, since it is obviously against a backdrop of an unfair and unaccommodating society that prospective parents make prenatal testing decisions. In addition, when parents make prenatal testing and pregnancy management decisions, they do not only consider the well-being of the future child, they also consider their own well-being as well as that of their other children.28 The point that DS advocates have been trying to make for the purpose of prenatal testing conversations is in line with this requirement for nuance. While maintaining the claim that fairer social arrangements would improve the wellbeing of disabled people, they claim that even in the current state of affairs, living with DS as an individual or family is a more positive experience than people expect. (To some of them, this may represent a little-w worse off as opposed to a big-W kind of being worse off). This point has been strongly made by DS advocates in the process of adopting federal and state laws that mandate the provision of more positive information about DS. We now turn to describing the DSIA in greater detail and appraise what this view (i.e., positive information reflecting a mere difference view) means for the neutrality requirement in prenatal testing conversations. II. THE DSIA AND NEUTRAL COUNSELING

The wording of the memorandum accompanying the Pennsylvania DSIA is quite telling of the context under which it was elaborated. It suggests that in the pre-DSIA context, all health professionals are not providing complete information about DS, and that the missing parts are positive ones: Dubbed “Chloe’s Law,” after an incredible child with DS, the legislation would simply require health care practitioners to provide complete information to women who receive a prenatal diagnosis for DS so that they are better informed with regard to the positive outcomes of giving birth to a child like Chloe.29 28

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See Elisa Garcia et al., Parental Duties and Prenatal Screening: Does an Offer of Prenatal Screening Lead Women to Believe That They Are Morally Compelled to Test?, 28 Midwifery e837, e841 (2012). Co-Sponsorship Memorandum, supra note 7.

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Nondirectiveness has been the longstanding gold standard of genetic medicine and a cornerstone of genetic counseling from its very inception.30 Whether this is a desirable or an attainable goal has been discussed, and ways to define it may vary. Yet, it has always remained a “consensual mantra.”31 More broadly speaking, and this is important because prenatal testing conversations are not always conducted by genetics specialists, the stated objective of prenatal testing is to facilitate decisionmaking32 as opposed to encouraging pregnancy termination. While other health professionals may subscribe to other models, such as shared decision-making rather than nondirectiveness,33 they are still expected to avoid imposing their personal views or pressuring their patients in any way.34 These requirements reflect an ideal of neutrality in the provision of prenatal testing and prenatal testing information. At the same time, empirical research has shown that failures to abide by neutrality or nondirectiveness are common in prenatal testing conversations. Skotko showed that significant minorities of women experienced being pressured or coerced by physicians to pursue screening, diagnosis, or pregnancy termination.35 More recently, Goff et al. showed that insistence in favor of testing and terminating continues to occur.36 Farrelly et al. showed that most genetics counselors mention pregnancy termination as the only pregnancy management option after prenatal diagnosis and that they continue to emphasize medical information and convey an entirely medical view of disability.37 Moreover, written material provided to expecting parents has consistently been shown to emphasize clinical information of a negative valence and to leave aside any experiential information and information of positive valence.38 The lack of such information has been identified by pregnant women as a hindrance to the exercise of free and informed choice,39 which is the goal of nondirectiveness. 30 31

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See S. Kessler, Psychological Aspects of Genetic Counseling, 72 Am J Med Genet., 164 (1997). Id. See also Caplan, supra note 8, at 3; Bonnie S. LeRoy, Nondirectiveness (2006), Encyclopedia of Life Sciences; Meredith Vanstone et al., Information-Sharing to Promote Informed Choice in Prenatal Screening in the Spirit of the SOGC Clinical Practice Guideline: A Proposal for an Alternative Model, 34 J. Obstetrics & Gynaecology Can. 269, 270 (2012). See Theresa M. Marteau, Towards Informed Decisions About Prenatal Testing: A Review, 15 Prenatal Diagnosis 1215, 1215 (1995). See Vanstone et al., supra note 30, at 271. See David Alan Klein, Medical Disparagement of the Disability Experience: Empirical Evidence for the “Expressivist Objection,” 2 Am. J. Bioethics Primary Res. 8, 10 (2011). Brian G. Skotko, Prenatally Diagnosed Down Syndrome: Mothers Who Continued Their Pregnancies Evaluate Their Health Care Providers, 192 Am. J. Obstetrics & Gynecology 670 (2005). See also Klein, supra note 33. Briana S. Nelson Goff et al., Receiving the Initial Down Syndrome Diagnosis: A Comparison of Prenatal and Postnatal Parent Group Experiences, 51 Intell. & Dev. Disabilities 446 (2013). Ellyn Farrelly et al., Genetic Counseling for Prenatal Testing: Where Is the Discussion About Disability?, 21 J. Genetic Counseling 814 (2012). See generally Karen L. Lawson et al., The Portrayal of Down Syndrome in Prenatal Screening Information Pamphlets, 34 J. Obstetrics & Gynaecology Can. 764 (2012). See id. at 762.

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In light of such findings, a group of genetic counselors concluded in 2011 that “standards of what constitute ‘unbiased’ or ‘balanced’ information do not exist, but the available evidence suggests that genetic counselors are perceived as negatively biased.”40 Thus, it appears that mandating positive information and/or a positive spin was not an attempt to break with a well-established culture of neutrality,41 but rather an attempt to improve neutrality by outbalancing negative tendencies. Here we draw attention to two different means by which the DSIA aims to implement this push towards neutrality: the involvement of advocacy groups and the provision of evidence-based data about psychosocial outcomes. A. Involvement of Advocacy Groups The DSIA requires informational tools to be approved by DS support and advocacy associations and to include contact numbers for such associations. Sagit Mor discusses the “nothing about us without us” slogan of the disability rights movement and its collective implications. For disability advocacy, having secured a say on how living with DS is described to prospective parents might be an instance of “individual experiences” having aggregated in “collective claims” that successfully became “political and legal action” as defined by Mor.42 Caplan sees this as a threat to neutrality, as he argues that such political agendas could promote a propensity to overly emphasize positive stories and experiences.43 Yet, the law warrants revision and approval by medical experts, as well as advocacy groups. An ongoing debate between healthcare professionals and advocacy groups has been addressing the kind of information that must be provided. As previously discussed, while healthcare providers and the leaflets they provide are known to emphasize medical facts that are considered to be neutral or negative, advocacy groups have been calling for the addition of more information of an experiential nature, i.e., what it is like to live with DS on a daily basis as an individual or as a family. Such information is known to have a more positive connotation.44 Thus, the demands of DS advocates, emanating from a mere difference-like view of DS, have prompted legal measures towards improving the neutrality of counseling and the informed nature of decision-making. In addition, advocacy groups’ involvement may be seen as a means to foster epistemic justice. In Chapter 3 of this volume, 40

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Anne C. Madeo, et al., The Relationship Between the Genetic Counseling Profession and the Disability Community: A Commentary, 155 A Am. J. Med. Genetics 1777, 1779 (2011). Caplan, supra note 8, at 2. Sagit Mor, Nothing About Us Without Us: A Disability Challenge to Bioethics, in Bioethics and Biopolitics in Israel: Socio-legal, Political, and Empirical Analysis 97, 97–116 (2017). See also Sagit Mor, Panel Discussion at 2018 Petrie-Flom Center Annual Conference: “Nothing About Us Without Us: Individual and Collective Dimensions” (June 1, 2018), available at https://vimeo.com /278693101#t=34m36s. Caplan, supra note 8, at 3. See Lawson, supra note 37, at 761.

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Daniel S. Goldberg explains that disabled individuals may endure epistemic injustice in various ways, ranging from societal norms that prevent their account from being believable, to prejudices that prevent them from being afforded any credibility, to the involvement of healthcare practitioners in establishing and maintaining the medical model of disability as a regime of truth. B. Providing Evidence-Based Information The DSIA also mandates that informational material present evidence-based data on the psychosocial outcomes of DS. It is particularly relevant that the material development has to include medical experts as well as advocates, because the evidence-based literature on the psychosocial outcomes for individuals and families living with DS is also made of two distinct strands that mirror the views of the advocacy and medical fields, and the views of DS as a mere difference or bad difference. These bodies of research can be categorized as (a) quantitative accounts that compare the quality of life of people living with DS with that of neurotypical people or people living with other disabilities, and (b) qualitative life experience descriptions. Both types of research meet methodological challenges and criticisms. We now turn to describe both strands and their respective limitations. Recent influential research on the life experience of people living with DS highlights an overwhelming preponderance of positive experiences for them, their siblings and their parents.45 Skotko et al. found an overwhelming majority of their sample of individuals with DS to be satisfied with various dimensions of theirs lives, as well as overwhelming majorities of parents and siblings reporting positive feelings about life with someone who has DS. Of note, this kind of research does not compare the experience of families with DS with that of the general population. In addition to not quantifying whether participants are more or less happy than counterparts from the general population, it does not provide comparisons from the general population with regard to the proportions of people reporting happiness, love, regret, and so forth. In line with Stoner’s view about the irrelevance of quantifying and comparing the content of abundant cornucopias of possible life goods, such up-to-date, evidence-based literature might be sufficient in reassuring future parents that a child with DS is likely to have a fulfilling life and that having such a child will likely not undermine family cohesion. 45

See, for example, Alderson, supra note 24; Brian G. Skotko et al., Self-Perceptions from People with Down Syndrome, 155A Am. J. Med. Genetics 2360 (2011) (hereinafter Skotko et al., Self-Perceptions); Brian G. Skotko et al., Having a Son or Daughter with Down Syndrome: Perspectives from Mothers and Fathers, 155A Am. J. Med. Genetics 2335 (2011) (hereinafter Skotko et al., Perspectives from Mothers and Fathers); Brian G. Skotko et al., Having a Brother or Sister with Down Syndrome: Perspectives from Siblings, 155A Am. J. Med. Genetics 2348 (2011) (hereinafter Skotko et al., Perspectives from Siblings).

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However, this body of literature can be criticized for being subjected to nonresponse bias, selection bias, and representativity issues.46 First, the most intellectually challenged individuals living with DS do not have sufficient intellectual capabilities to complete surveys or interviews. In addition to providing an incomplete picture of the experience of living with DS, this prevents researchers from proving or disproving a relationship between self-perceived well-being and functional outcomes. Even among those who do have such ability, people with a more positive experience are more likely to be willing to share it with researchers than those who struggle, a problem that is particularly salient given recruitment through support organizations.47 Third, caregivers may not all be reliable proxies to report on the experience of people living with disability.48 Finally, the demographics of respondents are often not representative of US demographics, since economically privileged people of majority ethnic groups are more likely than others to be involved in the large support groups through which recruitment is done.49 However, it should also be recognized that the large size of the study adds to its credibility, and the overwhelming unanimity of positive outcomes is highly indicative of a powerful trend.50 Yet, contrary to what Stoner’s cornucopia view teaches, it might be intuitive for many parents to ask how this positive experience compares to that of neurotypical children and their families. After all, the alternative they are presented with is to terminate the pregnancy and try again in the hope that the next fetus will be unaffected. Quantitative quality of life research does use this comparative approach.51 This framework tends to yield a more diverse range of conclusions than the abovementioned life experience data. While a few indicators yield neutral to positive impacts, a majority of indicators lead to the conclusion that individuals with DS and their families have a slightly lower quality of life than neurotypical people and families. However, from the disability scholarship perspective, these studies also have their own methodological shortcomings. They rest on methodologies and assumptions that emanate from the biomedical world and thus do not 46

47 48

49 50

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See, e.g., Mark W. Leach & Brian G. Skotko, Resources Available for Informed Prenatal Decisions, 14 Genetics in Med. 348 (2012); Skotko et al., Self-Perceptions, supra note 44; Skotko et al., Perspectives from Mothers and Fathers, supra note 44; Skotko et al., Perspectives from Siblings, supra note 44. Caplan supra note 8, at 2. See Elena M. Andresen et al., Proxy Reliability: Health-Related Quality of Life (HRQoL) Measures for People with Disability, 10 Quality of Life Res. 609 (2001). Skotko et al., Perspectives from siblings, supra note 44. See Leach & Skotko, supra note 45; Skotko et al., Self-Perceptions, supra note 44; Skotko et al., Perspectives from Mothers and Fathers, supra note 44; Skotko et al., Perspectives from Siblings, supra note 44; Robert T. E. Cole, Just Prenatal Testing? The Science, Ethics, and Policy of Testing for Down Syndrome (2013) (BMSc thesis, University of Otago), available at https://ourarchive .otago.ac.nz/handle/10523/4351. See, for example, Problem Behavior and Quality of Life in a Population Based Sample of Eight-YearOld Children with Down Syndrome, 6 PLoS One e21879, (2011); Roy I. Brown et al., Family Quality of Life When There Is a Child With a Developmental Disability, 3 J. Pol’y & Prac. in Intell. Disabilities 238 (2006).

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capture the reality of life with disability.52 A negative valence implicit in the question formulation increases the chance of recording problems rather than successes.53 Moreover, disabled individuals may not adhere to the assumption that independence and high-level function are key determinants of quality of life, an assumption that is implicit or explicit in such quantitative quality of life research54 and inconsistent with Stoner’s account. Thus, completely embracing the mere difference view justifies providing qualitative life experience information, as opposed to quantitative quality of life information. However, considering the needs of prospective parents, as well as the shortcomings of Stoner’s mere difference view, demands the provision of both strands of the evidence-based debate. In addition, the quality of life findings are not necessarily inconsistent with the mere difference view, since they might (subjectively) be subsumed within the things that make a person little-w worse off, and/or that are due to social circumstances, and thus do not undermine a mere difference status. III. THE MERE DIFFERENCE VIEW, NEUTRAL COUNSELING, AND CONSTRAINTS OF REALITY

Content analysis of the informational material developed in the context of Chloe’s Law reveals that the very spirit of the law was not applied, and that the content is highly similar to pre-DSIA material.55 Thus, even legislation is proving to be unsuccessful in ensuring that a balanced view of DS is presented to prospective parents. It is important to recall that Stoner’s account of DS as a mere difference rests on a view of well-being that excludes market productivity and independence as correlates of well-being, as well as on a subjective and arbitrary judgment about the significance of pain and decreased life expectancy in DS. In our neoliberal societies that systemically value such features highly, it is very likely that (a) prospective parents will factor in market productivity and independence as correlates of their eventual child’s and their own potential well-being, and (b) social expectations for market productivity and independence are part of the set of social norms that effectively make (at least some) intellectually disabled people worse off in terms of well-being, as they often do not meet these expectations. This context suggests that refusing prenatal testing and pregnancy termination for DS amounts to “militancy” as opposed to mere choice.56 Indeed, refusing prenatal 52 53 54 55

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See, for example, Alderson, supra note 24, at 636; Miller & Levine, supra note 26, at 100. See, for example, Alderson, supra note 24, at 629. See Miller & Levine, supra note 26, at 98. See generally Deborah Levenson, Debate Surrounds State Laws for Down Syndrome Fact Sheets, 170A Am. J. Med. Genetics Part 555 (2016); Leach, supra note 6. He´loise Varin, L’anormalite´ foucaldienne et le de´pistage pre´natal L’exemple de la trisomie 21 au Que´bec (2016) (unpublished MA dissertation, Universite´ Laval), available at https://corpus.ulaval.ca /jspui/handle/20.500.11794 /26643.

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testing and pregnancy termination on the basis that DS is philosophically a mere difference, as well as accounting for other arguments of disability activism, may represent a commitment to an ideology rather than individual or family-centered pragmatic thinking. In a society where patient-oriented counseling services are defined as “a type of social work contributing to the benefit of the whole family without direct concern for its effect upon the state or politics,”57 such burden does not fall on individuals’ shoulders. Thus, disability rights advocates and mere difference view proponents can have a meaningful impact arguing in favor of more positive information that enhances the neutral nature of counseling and the informed nature of decision-making. However, it remains that the paradigm of counseling, as well as our social structures and some biological realities, make it unrealistic to apply a strict mere difference view of DS to counseling guidelines. Still, a more genuine effort to abide by the spirit of the DSIA in terms of providing more positive information would be welcome. IV. CONCLUSION

The DSIA aimed at providing patients with neutral counseling with regard to prenatal testing and pregnancy termination for DS. Both the empirical and the conceptual aspects of the research regarding what it means to live with DS yield complex results. As empirical research presents various types of biases, philosophical theory has subjective and arbitrary dimensions and requires moral imagination on the part of prospective parents if society does not live up to the promise of turning significant disabilities into trivial impairments. We should avoid maintaining conservatively negative depictions, but we should also avoid implying promises of well-being for children and families with DS, for which society fails to deliver the necessary conditions. This is in line with the idea that DS might conceptually be considered a mere difference, while acknowledging the reality that prospective parents make reproductive decisions on the backdrop of current social arrangements that remain unfair to people with disabilities. These challenges to the autonomy model of prenatal testing point, once again, to the failure of our societies to provide social and physical environments that maximize everyone’s well-being and social participation. Getting better at this is the last piece in the puzzle of promoting informed and unconstrained choice in prenatal testing. We need to do more to effectively maximize the well-being of individuals with disabilities living amongst us before confidently telling people that disability is not bad for well-being. The idea that better living conditions for disabled people 57

Barbara K. Rothman, The Tentative Pregnancy: How Amniocentesis Changes the Experience of Motherhood, 34 (1993)

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would improve the unconstrained nature of prenatal testing decisions is not new in the bioethics and disability advocacy literature. The “mere” or “bad difference” framework provides yet another conceptual route to a familiar destination, reinforcing a conclusion that has much normative support, but has yet to achieve the policy goals it calls for.

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6 Dementia, Disability, and Advance Medical Directives: Defensible Standards for Dementia Care Rebecca Dresser

Anyone fortunate enough to live beyond middle age is at risk of developing dementia, a widely feared disability.1 Public perceptions of dementia are overwhelmingly negative. Indeed, it is not unusual to hear people say they would not want to live if they developed the condition.2 People worried about developing dementia see advance medical directives as a way to prevent extended life with this disability. Such directives allow competent persons to choose in advance whether or not to receive different medical interventions if they become mentally incapable of making such choices. In recent years, scholars and members of the public have endorsed laws and policies that would expand dementia care planning beyond the realm of decisions about intensive care, antibiotics, medical nutrition and hydration, and other life-sustaining interventions. For example, some support allowing advance directives to authorize withholding of ordinary food and water in late-stage dementia.3 Some also argue that the United States should follow the Netherlands in legalizing advance directives for physicianassisted death after the onset of dementia.4 1

2

3

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Some surveys suggest that dementia is replacing cancer as the most feared disease in the United States. See Americans Rank Alzheimer’s as Most Feared Disease, According to New Marist Poll for Home Instead Senior Care, Business Wire (November 13, 2012), www.businesswire.com/news/home/ 20121113005422/en/Americans-Rank-Alzheimer%E2%80%99s-Feared-Disease-New-Marist. See, for example, Dena S. Davis, Alzheimer Disease and Pre-Emptive Suicide, 40 J. Med. Ethics 543 (2014); Glen Davis, Letter to the Editor, Learning Your Alzheimer’s Risk, NY Times (November 24, 2017), www.nytimes.com/2017/11/24/opinion/alzheimers-risk.html; The Debate Across the Nation over “Death with Dignity” Laws, The Diane Rehm Show (November 28, 2016), http://thedianerehmshow .org/shows/2016-11-28/aid-in-dying. Rebecca Dresser, Toward a Humane Death with Dementia, 44 Hastings Ctr. Rep. 38 (2014); Paul T. Menzel & M. Colette Chandler-Cramer, Advance Directives, Dementia, and Withholding Food and Water by Mouth, 44 Hastings Ctr. Rep. 23 (2014); Jane Brody, Alzheimer’s? Your Paperwork May Not Be in Order, NY Times (April 30, 2018), www.nytimes.com/2018/04/30/well/live/an-advance-directive-forpatients-with-dementia.html. Paul T. Menzel & Bonnie Steinbock, Advance Directives, Dementia, and Physician-Assisted Death, 41 J.L. Med. & Ethics 484 (2013); Ron Lieber, How the Medicaid Debate Affects Long-Term Care Insurance Decisions, NY Times (July 14, 2017), www.nytimes.com/2017/07/14/your-money/how-themedicaid-debate-affects-long-term-care-insurance-decisions.html.

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Public, professional, and scholarly support for advance directives is strong. But few advance directive supporters acknowledge the complexity of planning for dementia care. Individuals typically live for many years after a dementia diagnosis, years in which meaningful and satisfying life can continue. People cannot be sure how they will fare as dementia patients, but experts and caregivers say that patients often adapt to an existence that is very different from the one they valued at an earlier time. Two central values can be at odds in dementia care planning. Respect for autonomy and self-determination supports empowering people to control the care they receive as dementia patients. At the same time, respect for people with disabilities supports protecting the well-being of persons with dementia. The general standard of care mandates medical treatment that promotes the best interests of patients with cognitive disabilities. Should an advance directive be sufficient to authorize treatment decisions that fail to conform to that standard? In short, should competent individuals be empowered to discriminate against their later disabled selves? Although advance directives have a role in guiding the care of people with dementia, their authority should be limited. Three considerations justify limiting the authority of advance treatment decisions: (1) difficulties in promoting informed choice in light of incomplete, inaccurate, and negative stereotypes about life with dementia; (2) deficiencies in the ability of competent persons to predict their subjective quality of life with dementia; and (3) potential conflicts between a competent person’s advance instructions and that individual’s later interests as a person with dementia. Law and policy governing decisions on dementia care should both protect people from their previous harmful choices and promote changes in the social and environmental conditions that play a central role in determining the quality of life for people with dementia. I. BARRIERS TO INFORMED CHOICE

Planning for dementia care is complicated and difficult. Although the physical effects of advanced dementia can be lethal, people typically live for years before reaching that point. In the meantime, they can develop other life-threatening conditions, such as infection, cardiovascular disease, and cancer. Thus, dementia care planning requires individuals to think about the kinds of treatment they would want in a variety of illness situations. In this sense, dementia planning presents difficulties similar to those faced by a healthy person making a general advance directive. Experts evaluating advance planning in that context recognize that it is impossible for healthy people to develop an in-depth understanding of all the medical facts and treatment options that could be relevant to future care.5 5

See Angela Fagerlin & Carl E. Schneider, Enough: The Failure of the Living Will, 34 Hastings Ctr. Rep. 30 (2004); Henry Perkins, Controlling Death: The False Promise of Advance Directives, 147 Annals Internal Med. 51 (2009).

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An even bigger challenge for dementia care planners is to understand their potential quality of life with dementia. People with dementia can experience confusion, anxiety, distress, and other difficulties. Yet many also report and exhibit contentment much of the time, especially if they are living in appropriate care settings. As the condition progresses, people tend to become less concerned about their losses, adjusting to their changed situations. Contrary to popular conceptions, people with dementia can continue to enjoy activities, interactions, and relationships for many years.6 In the United States, negative stereotypes about life with dementia are pervasive. Historian Jesse Ballenger describes how campaigns for public awareness and research funding for Alzheimer’s disease employed “apocalyptic demography” to emphasize the human and financial costs of a failure to find effective treatment for the condition.7 This strategy succeeded in raising awareness and research dollars, but also depersonalized and stigmatized people living with Alzheimer’s disease. Today’s conversation continues in this vein, with a “tragedy discourse” dominating the public conversation about dementia.8 People bring these negative images into their thinking about the medical care they would want as dementia patients. And because people often do their planning with little to no medical guidance, those impressions can go unchallenged. Some people complete advance directives on their own, perhaps discussing treatment questions with family members and friends who also lack a good understanding of dementia. Some planners seek guidance from lawyers or social workers, but these professionals may be unfamiliar with the medical details relevant to advance planning.9 Even planners who consult medical professionals might not get the education they need, for clinicians lacking a background in geriatric care can convey an incomplete, unrepresentative, or biased account of dementia’s effects. In these circumstances, planners might never learn about the diversity of experiences of people living with dementia, including the positive features of living with the condition. As Chapter 5 by Lemoine and Ravitsky points out, a similar problem exists when prospective parents participate in prenatal testing for Down syndrome. 6

7 8

9

See, for example, N. R. Kleinfield, Fraying at the Edges, NY Times (April 30, 2016), www.nytimes.com /interactive/2016/05/01/nyregion/living-with-alzheimers.html; Stacy Burling, Temple Professor Jeff Draine has Alzheimer’s – and He’s Still Teaching, Philly.com (December 8, 2017), www.philly.com/philly/health/ jeff-draine-temple-alzheimers-disease-social-work-professor.html; Brian Mann, To Help Others, One Couple Talks about Life with Early-Onset Alzheimer’s, NPR (January 2, 2018), www.npr.org/sections/ health-shots/2018/01/02/573020918/to-help-others-one-couple-talks-about-life-with-early-onset-alzheimers; About Us, Dementia Action Alliance, https://daanow.org/our-mission/ (last visited January 23, 2019). Jesse F. Ballenger, Framing Confusion: Dementia, Society, and History, 19 AMA J. Ethics 713 (2017). Peter Reed et al., Transcending the Tragedy Discourse of Dementia: An Ethical Imperative for Promoting Selfhood, Meaningful Relationships, and Well-Being, 19 AMA J. Ethics 693 (2017). See also Jim VandenBosch, Seeing Dementia: Two Radically Different Views, 58 Gerontologist 608 (2018). Mary Butler et al., Agency for Healthcare Research and Quality, Technical Brief No. 16, Decision Aids for Advance Care Planning 3, 8 (2014), https://effectivehealthcare.ahrq.gov/topics/advanced-caredecision-aids/technical-brief.

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A potential source of high-quality information about dementia is the online literature aimed at helping people with their advance planning. But these materials, known as decision aids, have shortcomings too. In 2014, reviewers commissioned by the US Agency for Healthcare Research and Quality reported on eighteen generally available advance planning decision aids.10 The report describes deficiencies in most of the aids. Aids designed to help healthy people with planning failed to provide the information users needed to make well-informed decisions about their future care. Aids intended to serve people facing a life-limiting condition with an uncertain trajectory, such as dementia, supplied inadequate information about prognosis and treatment benefits and harms. Few planning aids included “personal narratives based on patient experiences in various health conditions and after receiving life prolonging therapies.”11 Planning aids also failed to present information in a balanced way. For example, some of the aids included potentially alarming videos of seriously ill people that “could bias viewers toward less care than they may otherwise have chosen.”12 A dementia planning aid introduced in 2017 has some of these shortcomings. The Health Directive for Dementia13 lets people choose the level of care they would want if they developed mild, moderate, or severe dementia. The directive offers a brief general description of dementia, as well as of each of the three stages. But the descriptions list only the losses and impairments that people with dementia experience, omitting any of the capacities that they continue to possess. Moreover, the document says nothing about the contentment that many people with dementia experience much of the time. It describes burdens and risks imposed on loved ones and other caregivers without noting that many of those individuals also value their interactions and ongoing relationships with dementia patients. It presents an oversimplified picture of people with dementia, too, portraying capacities like the ability to engage in conversation and recognize loved ones as all-or-nothing when, in reality, they are matters of degree.14 To make forward-looking choices about medical care, people should understand the basic facts relevant to such choices. This means that people engaged in advance 10

11 12

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Id. For a summary of the report, see Mary Butler et al., Decision Aids for Advance Care Planning: An Overview of the State of the Science, 161 Annals Internal Med. 408 (2014). For a general description of decision aids in medicine, see Thaddeus Mason Pope, Certified Patient Decision Aids: Solving Persistent Problems with Informed Consent Law, 45 J.L. Med. & Ethics 12 (2017). Butler et al., supra note 9, at 33. Id. at 30. Although videotapes of patients with Alzheimer’s disease can be useful in educating advance planners, they can also present biased information that shapes a person’s decisions. See Theresia Volhard et al., Advance Directives for Future Dementia Can Be Modified by a Brief Video Presentation on Dementia Care: An Experimental Study, 13 PLoS One 5 (2018). Barak Gaster et al., Advance Directives for Dementia: Meeting a Unique Challenge, 318 J. Am. Med. Ass’n 2175 (2017); Barak Gaster, Advance Directive for Dementia, www.dementia-directive.org (last visited January 23, 2019). For perceptive analysis of these points, see Janelle S. Taylor, On Recognition, Caring, and Dementia, 22 Med. Anthropology Q. 313 (2008).

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planning for dementia care need accurate and balanced information about the condition, including facts about the subjective experiences of people with dementia. More “insider” views of this disability would help outsiders better understand what living with dementia could be like for them.15 Improving the knowledge base for dementia planning would not be difficult. Insider views of dementia are more available than ever. Many people diagnosed with dementia are writing and speaking about their situations, as are people with close relationships to dementia patients.16 This growing body of literature reveals a rich, detailed, and diverse picture of living with dementia. First-person accounts also highlight the role that living situations and social interactions play in determining the ups and downs of life with dementia. Giving advance planners access to these accounts could help them make more informed and thoughtful decisions about future care.17 II. PERSISTENT KNOWLEDGE DEFICITS

Although supplying better information about dementia to advance planners could improve their choices, in-depth understanding of the relevant facts is not enough to produce good decisions about future dementia care. Even well-informed planners can make poor choices, for there is a serious possibility that they will make incorrect assumptions about their quality of life with dementia. People contemplating their plans for the future engage in what psychologists call “affective forecasting,” predicting how they would feel if different events occurred.18 Empirical research shows that people tend to overestimate the negative impact an illness or injury would have on their future well-being. The mistakes are due to several flaws in decision-making. According to one literature review, “perhaps the most pervasive influence on affective forecasting is the failure to anticipate one’s own ability to make sense of the world in ways that minimize its emotional impact.”19 The “focusing illusion” is another source of error: “If people focus very narrowly on those domains of their lives that are influenced by illness and injury, they will imagine being less happy than they really would be.”20 15 16

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See Elizabeth F. Emens, Framing Disability, 2011 U. Ill. L. Rev. 1383, 1389–1407. See, for example, Taylor, supra note 14; Robin Marantz Henig, The Last Day of Her Life, NY Times Mag., May 14, 2015, www.nytimes.com/2015/05/17/magazine/the-last-day-of-her-life.html; Kleinfield, supra note 6; Mann, supra note 6. Balanced information about the effects of dementia could counter negative beliefs about aging that might actually increase a person’s risk of developing dementia. A study published in 2018 found that people who internalized negative age-related stereotypes had higher levels of dementia than did those with more positive attitudes about aging. See Becca R. Levy et al., Positive Age Beliefs Protect Against Dementia Even Among Elders with High-Risk Gene, 13 PLoS One 2 (2018). Timothy D. Wilson & Daniel T. Gilbert, Affective Forecasting, 35 Advances Experimental Soc. Psychol. 345 (2003). Id. at 384. Peter A. Ubel et al., Misimagining the Unimaginable: The Disability Paradox and Health Care Decision Making, 24 Health Psychol. S57, S61 (2005).

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Flawed reasoning strategies give rise to what is known as the “disability paradox.”21 As discussed by Nir Eyal in Chapter 20 of this volume, studies show that people living with a wide range of disabilities are happier and enjoying a higher quality of life than healthy people think they are. There is a “disability perspectives gap” between how people with disabilities rate their lives and how nondisabled people rate them.22 A striking example of the disability paradox comes from empirical studies asking healthy and brain-injured individuals about their preferences for life-saving surgery following severe brain trauma. In one study, researchers interviewed people who had the surgery and survived with serious disabilities that made them heavily dependent on others for help with everyday activities. Eleven of thirteen patients interviewed said that they would have consented to the surgery even if they had known its outcome.23 In contrast, a study of healthcare workers found that very few of them would consent to the life-saving procedure if they knew they were likely to survive with the disabilities the patients were facing.24 Experts report that the disability paradox exists for dementia as well. Peter Rabins, a leading authority in the field, says that people seeking an earlier death over life with dementia are “overestimating the importance of cognition in their lives and underestimating the importance of interpersonal relationships.”25 According to another expert, Cees Hertogh, “people with dementia often come to terms with the consequences of their disease and adapt” to their new circumstances.26 Family members comment on the phenomenon, too. Bioethicist Stephen Latham reports that after his father was diagnosed with Alzheimer’s disease, he was “perfectly happy” doing things like playing catch with a grandson he could not identify, even though before developing the condition he “would not have wanted to live like this.”27 Philosopher Kyle Boerstler invokes Laurie Paul’s concept of “transformative experience” to explain the competent person’s inability to make good choices about future dementia care. Transformative experiences change a person’s perceptions and preferences in ways that the person cannot imagine ahead of time. Living 21 22 23

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Id. at S57. Emens, supra note 15, at 1389. Stephen Honeybul et al., Long-Term Survival with Unfavourable Outcome: A Qualitative and Ethical Analysis, 41 J. Med Ethics 963 (2015). Id. at 967. Peter V. Rabins, Can Suicide Be a Rational and Ethical Act in Persons with Early or Pre-dementia? 7 Am. J. Bioethics 47, 49 (2007). Cees M. P. M. Hertogh, The Role of Advance Euthanasia Directives as an Aid to Communication and Shared Decision-Making in Dementia, 35 J. Med. Ethics 100, 101 (2009). Adaptation to disability can have different psychological components, some seen as more admirable than others. But whether adaptation is due to a laudable adjustment in life goals or a regrettable loss of insight into one’s situation seems irrelevant in the context of assessing the value life holds for a person with dementia. See generally Paul Menzel et al., The Role of Adaptation to Disability and Disease in Health State Valuation: A Preliminary Normative Analysis, 55 Soc. Sci. & Med. 2149 (2002). Stephen R. Latham, Living Wills and Alzheimer’s Disease, 23 Quinnipiac Prob. L.J. 425, 431 (2009–10).

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with dementia is a transformative experience, Boerstler contends. People may have a good understanding of the relevant facts about dementia, but they can never fully appreciate what it is like to live with dementia. As a result, he argues, the choices set forth in advance directives are simply guesses about the kind of care people think they would want following a dementia diagnosis.28 The problems I have described reduce the competent person’s ability to plan for future dementia care. Because the psychological changes that come with dementia alter the way people experience their lives, the moral justification for recognizing advance directives is weaker than the justification for recognizing contemporaneous choices about life-extending treatment. To protect people living with the disability of dementia, legal rules and ethical guidelines must take this difference into account. III. THE DEBATE OVER TREATMENT STANDARDS FOR INCOMPETENT PATIENTS

Most ethicists and legal authorities see advance planning as the ideal way to resolve questions about life-sustaining treatment for incompetent patients. The predominant view is that the competent individual’s interest in controlling future care should take priority over that individual’s later interests as an incompetent patient. Thus, the best interest standard, which focuses on protecting the incompetent patient’s contemporaneous well-being, should apply only when competent individuals failed to express clear preferences about the care they would want as incompetent patients.29 Supporters offer different justifications for the primacy of the competent person’s interests, but all rely on the moral and legal principle of respect for autonomy in endof-life decisions. Legal philosopher Ronald Dworkin made one of the best-known arguments for this position. Dworkin proposed that two kinds of interests – experiential and critical – are central to living a good human life. People satisfy their experiential interests through engaging in activities that give them pleasure. Activities that promote a person’s critical interests can be enjoyable too, but they are also difficult and challenging. Pursuits linked to critical interests have the highest moral significance, Dworkin declared, for it is these pursuits that allow people to create what they see as meaningful lives.30 28

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Kyle Boerstler, The Challenge of Transformative Experiences for Advance Directives: Predicting a Future with Alzheimer’s Disease, 3 Palgrave Comm. 17034 (2017). For more on this view, see Rebecca Dresser, Autonomy and its Limits in End-of-Life Law, in The Oxford Handbook of U.S. Healthcare Law 399 (I. Glenn Cohen et al. eds., 2016); Rebecca Dresser, Precommitment: A Misguided Strategy for Securing Death with Dignity, 81 Tex. L. Rev. 1823, 1841–46 (2003); Rebecca Dresser, Missing Persons: Legal Perceptions of Incompetent Patients, 46 Rutgers L. Rev. 609, 636–66 (1994). See Ronald Dworkin, Life’s Dominion: An Argument about Abortion, Euthanasia, and Individual Freedom 199–241 (1993).

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Dworkin regarded advance directives as expressions of critical interests. Through making directives, competent individuals can ensure that they die in a manner consistent with the values and beliefs that guided the rest of their lives. Dworkin recognized that incompetent patients retain experiential interests in comfort and well-being, but he thought that such patients were too intellectually compromised to possess critical interests. Because critical interests are more important than experiential interests, Dworkin argued, the choices set forth in advance directives should take priority over any competing interests of incompetent patients. Many scholars subscribe to a version of Dworkin’s argument, but not all of them do.31 Challengers favor setting limits on the authority of advance planning to govern the incompetent patient’s care. Scholars in this group (and I am one of them) agree that advance directives are often a defensible guide to end-of-life decision-making, but contend that the incompetent patient’s contemporaneous interests should sometimes take priority. Some arguments for limiting the authority of advance directives reflect concerns about the competent person’s ability to understand and reason about future hypothetical treatment situations.32 Others emphasize psychological differences between the individual issuing a directive and the individual whose care is later at issue. According to certain philosophical theories of personal identity, someone undergoing extensive psychological changes can become a new and different person from the one who formerly existed.33 Over time, the changes that dementia produces could in theory create a new person. In such a case, people considering how to care for the patient would have no particular reason to consult the choices set forth in an earlier advance directive.34 A less radical argument focuses on potential changes in a person’s interests between the time the person makes a directive and the time it is applied. Competent individuals have the power to revise treatment preferences as they age and deal with new health situations. Giving absolute authority to advance directives denies incompetent patients the same access to care that fits their contemporaneous situations.35 When competent patients make choices that impose burdens, they are the ones who experience those burdens. But with advance directives, the patients 31

32

33 34

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See, for example, John Davis, Precedent Autonomy, Advance Directives, and End-of-Life Care, in The Oxford Handbook of Bioethics (Bonnie Steinbock ed., 2009); David DeGrazia, Human Identity and Bioethics (2005); Ben A. Rich, Prospective Autonomy and Critical Interests: A Narrative Defense of the Moral Authority of Advance Directives, 6 Cambridge Q. Healthcare Ethics 138 (1997). See, for example, Allen E. Buchanan & Dan W. Brock, Deciding for Others: The Ethics of Surrogate Decision Making 101–07 (1989). See, for example, Derek Parfit, Reasons and Persons 199–347 (1984). See Allen Buchanan, Advance Directives and the Personal Identity Problem, 17 Phil. & Pub. Aff. 277 (1988); Rebecca Dresser, Life, Death, and Incompetent Patients: Conceptual Infirmities and Hidden Values in the Law, 28 Ariz. L. Rev. 373, 379–81 (1986). See Rebecca Dresser, Relitigating Life and Death, 51 Ohio St. L.J.425 (1990); Rebecca S. Dresser & John A. Robertson, Quality of Life and Non-Treatment Decisions for Incompetent Patients: A Critique of the Orthodox Approach, 17 J.L. Med. & Ethics 234 (1989).

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experiencing burdens are usually unaware of the values that motivated the earlier choices. Another objection to giving advance directives full control comes from philosopher Agnieska Jaworska. This objection applies to incompetent persons with the capacity to express ideas about what makes their lives meaningful. Jaworska describes several real-life examples of individuals with dementia expressing such ideas in words and actions. She argues that although they lack the capacities necessary for independent medical decision-making, they retain the capacity to generate contemporaneous critical interests, interests that should be taken just as seriously as the critical interests a competent person expresses in an advance directive.36 The arguments I describe support restricting, not eliminating, the competent person’s authority over future care. Disability protection for patients with dementia can coexist with respect for the individual’s prior values and preferences, for many of the choices that people make in advance directives also promote their interests as incompetent patients. Through naming a trusted relative or friend as a proxy decision-maker, people can increase the chance that they will receive treatment that is both consistent with their longstanding values and solicitous of their wellbeing as incompetent patients. Moreover, the best option for dementia patients is often the comfort care that many people ask for in their advance directives. Intrusive treatments like chemotherapy, surgery, intensive care, and tube feeding can inflict heavy burdens on frail patients unable to understand why they are being imposed.37 In these situations, decisions to forgo treatment can often be defended under the best interest standard.38 36

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Agnieszka Jaworska, Respecting the Margins of Agency: Alzheimer’s Patients and the Capacity to Value, 28 Phil. & Pub. Aff. 105 (1999). People with dementia often have views on how they want their lives to go, including views relevant to medical decisions. Family members report that they make medical and research decisions in collaboration with relatives diagnosed with dementia. See, for example, Laura B. Dunn et al., “Thinking about It for Somebody Else”: Alzheimer’s Disease Research and Proxy Decision Makers’ Translation of Ethical Principles Into Practice, 21 Am. J. Geriatric Psychiatry 337 (2013); Deirdre Fetherstonhaugh et al., Being Central to Decision Making Means I am Still Here!: The Essence of Decision Making for People with Dementia, 27 J. Aging Stud. 143 (2013). For arguments that the preferences of incompetent persons should be considered in treatment decision-making, see Jason Adam Wasserman & Mark Christopher Navin, Capacity for Preferences: Respecting Patients with Compromised Decision-Making, 48 Hastings Ctr. Rep. 31 (2018); James M. Wilkins, Narrative Interest Standard: A Novel Approach to Surrogate Decision-Making for People with Dementia, 58 Gerontologist 1016 (2018). See Muriel R. Gillick, Doing the Right Thing: A Geriatrician’s Perspective on Medical Care for the Person with Advanced Dementia, 40 J.L. Med. & Ethics 51 (2012). Misunderstanding and inaccurate predictions can lead not only to unjustified failures to treat dementia patients, but also to unjustified treatment. Giving full authority to directives requesting burdensome life-sustaining treatments would be detrimental to patients’ contemporaneous wellbeing and contrary to their best interests. For detailed discussion of the best interest standard as it applies to dementia patients, see Dresser, Missing Persons, supra note 29 at 691–717; Rebecca Dresser & Peter J. Whitehouse, The Incompetent Patient on the Slippery Slope, 24 Hastings Ctr. Rep. 6 (1994).

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In certain situations, however, the choices in an advance directive should be rejected. Consider law professor Norman Cantor’s advance directive refusing “any and all life-sustaining means” if dementia causes “mental deterioration to a point when I can no longer read and understand written material such as a newspaper or financial records such as a checkbook.”39 Suppose that Cantor does develop dementia and becomes unable to comprehend newspapers and checkbooks. At that point, he does not remember making a directive, much less what he said in it. As a person with dementia, he takes pleasure in activities like singing and putting together simple jigsaw puzzles, valuing a life that once seemed to him undignified and demeaning. He also cooperates with the routine medical care he receives in his assisted-living facility. If he then comes down with pneumonia, should his caregivers withhold oral antibiotics that are likely to cure it? Withholding a low-burden treatment like this would fail to protect Cantor’s interests as a dementia patient still enjoying his life. A rule requiring absolute adherence to directives like Cantor’s would be incompatible with ethical and legal principles recognizing the value of life with intellectual disabilities.40 Such a rule would deny dementia patients the opportunity to receive care consistent with their contemporaneous interests. And it could leave dementia patients captive to the wishes of an earlier self who no longer exists. In sum, directives imposing clear harm on people with dementia should not be enforced. Deficiencies in the competent person’s ability to understand, appreciate, and predict how dementia will be experienced, together with societal responsibilities to safeguard the interests of people with disabilities, justify limiting the degree of control that individuals have over the care they receive as dementia patients. Rather than giving advance directives absolute authority, rules and guidelines should limit their impact. Legal and social institutions should also promote policies that make life better for people living with dementia. IV. FOSTERING A DISABILITY PERSPECTIVE ON DEMENTIA

Attitudes about the value of life with disabilities have evolved in recent decades. Permitting decisions to end the lives of dementia patients in the absence of clear threats to their contemporaneous well-being would be inconsistent with norms governing our obligations to people with disabilities. Besides setting limits on the 39

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Norman L. Cantor, On Avoiding Deep Dementia, 48 Hastings Ctr. Rep. 15, 16 (2018). For commentary on Cantor’s directive, see Rebecca Dresser, Advance Directives and Discrimination Against People with Dementia, 24 Hastings Ctr. Rep. 26 (2018). For discussion of hypothetical cases raising similar conflicts, see Boerstler, supra note 28; Rebecca Dresser, Dworkin on Dementia: Elegant Theory, Questionable Policy, 25 Hastings Ctr. Rep. 32 (1995). For a review of different philosophical approaches to conflict cases like this, see Agnieszka Jaworska, Advance Directives and Substitute Decision-Making, Stanford Encyclopedia of Philosophy (March 24, 2009), https://plato.stanford.edu/archives/sum2009/entries/advance-direc tives/.

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authority of advance directives, advance planning policies should encourage more informed decision-making by competent persons concerned about their future care as dementia patients. Through promoting a better understanding of what life with dementia can be like, such policies could mitigate the fear and negative stereotypes that motivate some advance planners. To date, the debate over treatment decisions for people with dementia has relied too heavily on the medical model of disability. Dementia is portrayed as a brain disease that imposes burdensome impairments on the sufferer. The only way for people to avoid this suffering is to avoid prolonged life with the condition. But dementia can be seen through a different lens. The social model of disability considers the environmental conditions and social practices that burden people living with disabilities.41 From this perspective, relief from suffering can come from changing the conditions that surround the person with dementia. Efforts to apply the social model of disability to dementia are underway at the national and international levels. In 2012, for example, the World Health Organization and Alzheimer’s Disease International issued a report describing how countries can improve the lives of people with dementia. The report urged action to “create a society where dementia is normalized and accepted as a disability,”42 through creating “dementia-friendly” communities that include people with dementia and their families in everyday life activities. A more ambitious policy goal is to create “dementia-positive” communities that recognize the strengths of people with dementia, empowering them to live meaningful lives.43 Many of us will develop dementia; virtually all of us will have relatives and friends who do. It is in all of our interests to work for accommodations that make life with dementia less terrifying than it has to be. Dementia brings undeniable changes, including many losses. But a dementia diagnosis need not mark the end of a life with value and meaning. Policies governing life-sustaining treatment for people with dementia should reflect this reality.

41 42

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See Emens, supra note 15, at 1401. Shih-Yin Lin & Frances Marcus Lewis, Dementia Friendly, Dementia Capable, and Dementia Positive: Concepts to Prepare for the Future, 55 Gerontologist 237 (2015). Id. For ethical analysis endorsing the dementia-friendly concept, as well as reports on efforts to promote it, see Dementia: Ethical Issues, Nuffield Council on Bioethics (October 2009), http:// nuffieldbioethics.org/dementia; Sarah Walker-Robinson, Let’s Talk (Some More) about Dementia, Nuffield Council on Bioethics (June 17, 2014), http://nuffieldbioethics.org/blog/2014/06/.

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Introduction to Part III Carmel Shachar

The relationship between individuals with disabilities and their medical providers can be especially fraught. One might assume that the medical system, because of its familiarity with people with atypical functioning, would have developed greater than average sensitivity to the concerns and needs of patients with disabilities. The chapters in this section, however, show that the reality is more complicated. The authors document a system that has not yet internalized disability as a “mere difference” and correspondingly reflects some of the most problematic aspects of disability as “bad difference.” Three of the chapters then consider how the application of a different framing of disability would improve the medical system by creating fairer policies, refining the clinician–patient relationship, and even changing the physical landscape of the clinic. In the remaining chapter, the authors consider how using the bad difference framework can, perhaps counterintuitively, result in improved treatment for individuals living with a particular disability. Two of the chapters take a macro view of the challenges faced by individuals with disabilities as they navigate the medical system, challenges they connect to the medical system neglecting to frame disability as mere difference. Chapter 7 by Adam Cureton, “Expressing Respect for People with Disabilities in Medical Practice,” opens this section by exploring the failure of the medical environment to cultivate respect towards patients with disabilities. This lack of respect is reflected in the attitudes of medical providers and staff towards their clients but also in the very physical structures of the medical setting, such as in waiting and exam rooms. Omar Sultan Haque and Michael Ashley Stein’s Chapter 9, “Humanizing Clinical Care for Patients with Disabilities,” likewise explores the underlying prejudices of the medical system towards patients with disability. Haque and Stein concentrate on the clinician–patient relationship itself. By allowing “ableism” to influence the clinician–patient relationship, medical providers often allow patients with disabilities to be minimized, receive unequal access to care, and have to settle for substandard clinical outcomes. Individuals with disabilities should not accept substandard care, they contend, and the medical system must shift their framing of disability through improved educational and clinical interventions. 91 Library, on 21 Jul 2020 at 02:45:57, subject to the Cambridge Core Downloaded from https://www.cambridge.org/core. University of Glasgow terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108622851.011

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Both chapters are fairly optimistic, providing a clear roadmap for how to improve the medical system from the perspective of patients with disabilities. The other two chapters in this section consider specific challenges facing people with disabilities as they interact with the medical system. Emily Largent, in Chapter 8, “Disabled Bodies and Good Organs,” considers organ transplantation policies in light of disability framing. Currently, the medical system considers disabled individuals as a good source of organs but not as worthy recipients. Reframing disability as mere difference, Largent argues, would result in more equitable transplantation policies by facilitating better access for disabled individuals seeking organs while also allowing disabled individuals interested in organ donation to act on their charitable motivations. Caroline Huang and David Wasserman, in Chapter 10, “Chronic Pain as a Challenge for Disability Theory and Policy,” likewise consider the application of disability framing to a specific condition, in this case, chronic pain. Huang and Wasserman’s contribution serves as an interesting counterpoint to the other three chapters because they argue that mere difference is not the correct framing for chronic pain. Huang and Wasserman acknowledge that many conditions leading to disability can be correctly framed as mere difference, but that chronic pain is intrinsically bad and should be understood as bad difference. By framing chronic pain as bad difference, they argue, we create a right to pain relief that will aid people with chronic pain as they navigate the medical system. This stands in contrast to Cureton, Haque, Stein, and Largent, who espouse the mere difference framework as one that will lead to more equitable and less problematic interactions between the medical system and individuals with disabilities. The medical system looms large in the lives of virtually everyone, but may have particular importance in the lives of people with disabilities, if only because we often use clinicians as gatekeepers for needed resources and interventions. For example, to obtain certain benefits or interventions, individuals must have their disabilities sufficiently documented by medical providers. All four chapters in this section make it clear that the medical system has a significant amount of room for improvement when it comes to treating patients with disabilities equitably.

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7 Expressing Respect for People with Disabilities in Medical Practice Adam Cureton1

All too often, the medical community treats people with disabilities in insulting and demeaning ways. Medical staff express disrespectful attitudes about disabled people through the environments they create, the policies they maintain, and the manner in which they interact with disabled patients. The symbolic messages of an inaccessible waiting room, a practice of transporting partially clothed disabled patients through public areas,2 or a turnedup lip at requests for accommodations are often offensive to disabled people.3 We – people with disabilities – deserve to be treated justly and humanely in medical settings, but we also deserve to be respected and to be shown respect in those contexts as well. The environments and policies of medical facilities, such as hospitals, doctor’s offices, physical therapy centers, and nursing homes – along with the actions, mannerisms, and language of staff who work in them, such as physicians, nurses, receptionists, and orderlies – often send disparaging messages about people with disabilities in ways that are incompatible with our human dignity. My aim is to explore, interpret, and assess this idea by, first, describing a general way of thinking about respect, disrespect, and expressions of those attitudes; second, using this model to explain how medical staff often express disrespectful attitudes about people with disabilities; and, third, suggesting some measures medical staff can take to avoid or counteract those messages and to show disabled people positive signs of respect.

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3

Thanks to Thomas E. Hill, David Wasserman, and the editors, as well as to audiences at the National Institutes of Health, Albany Law School, and McGill University for their feedback. See Eva Feder Kittay, Learning from My Daughter: The Value and Care of Disabled Minds (2019). See Elizabeth Pendo, What Patients with Disabilities Teach Us About the Everyday Ethics of Health Care, 50 Wake Forest L. Rev. 287 (2015); George Estreich, Medical Students: Down Syndrome, Paradox, and Medicine, 18 AMA J. Ethics 438 (2016); Alicia Ouellette, Bioethics and Disability: Toward a Disability-Conscious Bioethics (2013).

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Adam Cureton I. RESPECT AND DISRESPECT

An attitude – such as love, hope, or fear – is a family of tendencies to think, feel, and act in certain ways. Many of our attitudes can be assessed in moral terms as required or forbidden, admirable or base, virtuous or vicious, and ideal or less than ideal. Respect for persons is arguably one of the most important attitudes that we should strive to cultivate because of its connections with the dignity that all humans equally share. On this way of thinking, various forms of respect for persons are appropriate or ideal responses to one’s own dignity and to the dignity of other people. In its most basic form, respecting someone as a person involves judging that she has human dignity, which is an objective, incomparable, and inalienable worth that she can never lose. When we respect someone, we tend to understand, notice, and pay attention to her. We also tend to esteem, venerate, and cherish her. These “positive” aspects of respect lead us to engage with other people, to learn about them and their situation, and to hold them in high regard. Yet our ordinary idea of respect for persons also includes ‘negative’ aspects that lead us not to obstruct, meddle with, or concern ourselves unduly with others.4 Respecting ourselves and others is only one among a constellation of attitudes and actions that together comprise regarding and treating people with dignity. We also have reasons, for example, to refrain from interfering with the autonomous choices of others, to treat them justly, not to coerce, manipulate, deceive, or harm them, to improve their well-being, to care for them, to relate to them, and, as I will argue in the next section, to express respect for them as persons. These different kinds of values can compete with one another in particular cases, and their nature and relative importance can vary depending on the specific contexts in which they apply. Moral philosophers, bioethicists, legal scholars, and others have made progress specifying moral principles for adjudicating certain conflicts among some of the values that make up human dignity, but we should also continue working to identify, interpret, and apply those constitutive values themselves. Interpreting and applying the value of respect for persons to particular contexts often requires significant moral sensitivity to relevant facts and competing considerations, but we can draw some practical lessons about the kinds of respectful attitudes that medical professionals should have or aspire to have for their disabled patients. Medical personnel, for example, should not regard their patients as mere objects or nonhuman animals. They should understand and appreciate the basic rights of their patients, as well as their special rights as, for example, adults, mothers, or disabled people. Within certain limits, those in the medical community should not be judgmental about the basic values that their disabled patients affirm or always 4

See Adam Cureton, The Limiting Role of Respect for People with Disabilities, in The Oxford Handbook of Philosophy and Disability (David Wasserman & Adam Cureton eds., forthcoming); Sarah Buss, Appearing Respectful: The Moral Significance of Manners, 109 Ethics 795 (1999); Karen Stohr, Pretending Not to Notice: Respect, Attention, and Disability, in Disability in Practice: Attitudes, Policies, and Relationships 50 (Adam Cureton & Thomas E. Hill, Jr. eds., 2018).

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expect them to be deferential. Medical staff should not ignore, denigrate, or brush aside the legitimate complaints of their disabled patients; they should afford them privacy and hold them responsible for their free actions; and they should not regard the morally required assistance they give as mere charity. II. EXPRESSIONS OF RESPECT AND DISRESPECT

Our attitudes of respect or contempt towards someone can remain hidden in our own minds, but we can also express these attitudes. We may, for example, turn our back on an official or refuse to shake her hand, salute our commanding officer, sneer at a colleague, offer an obscene gesture to a motorist, tar and feather a criminal, or urinate on someone’s grave.5 Expressing or showing respect to someone paradigmatically involves making use of literal or figurative signs that have come to have the same meaning as a judgement we have that she has or lacks the value of human dignity.6 We can, for example, simply say that someone lacks inner worth of this kind, or we can heap insults on her by calling her “vermin” or “scum.” Shouting, laughing, and sneering at someone, using dismissive, haughty, disdainful, or contemptuous tones, and rolling our eyes can all be symbolic ways of showing that we think very little of her or regard her as worthless or contemptible. Actions, words, gestures, and tones of voice – along with flags, clothing, customs, traditions, formalities, and much else – have established meanings in certain social contexts that certain people have or lack the value of human dignity. We paradigmatically express respect or disrespect for someone by using these signs to show our attitudes of respect or disrespect. Expressing basic respect for others and not expressing basic disrespect for them in these ways are widely regarded as part of how we should or should aspire to regard and treat ourselves and others as people with human dignity. Part of what explains why these are appropriate responses to human dignity is arguably that they play a central role in morally valuable relationships of mutual trust, friendship, love, and solidarity that we have moral reasons to develop and maintain with one another. Ideal relationships of various kinds among human beings – including relationships of mutual respect among all human beings – require that we not only respect one another, but that we also communicate that we regard each other as having a vaunted moral status. Laughing and sneering at others, mocking, ridiculing, and insulting them, and talking down to them are often ways of damaging or preventing the morally important relationships with others that we have reasons to aspire to have with them because of the human dignity that we share. 5

6

See Thomas E. Hill, Jr., The Message of Affirmative Action, in Autonomy and Self-Respect 189 (1991); Thomas E. Hill, Jr., Symbolic Protest and Calculated Silence, in Autonomy and Self-Respect 52 (1991). See David Sosa, Bad Words: Philosophical Perspectives on Slurs (2018); Rae Langton, Sexual Solipsism: Philosophical Essays on Pornography and Objectification (2009).

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There is also an extended sense in which we can express respect and disrespect even when we do not have these attitudes ourselves. Making use of actions, mannerisms, symbols, and other things that mean or presuppose that someone has or lacks inner worth can express respect or disrespect by reinforcing, undermining, or otherwise leading us or others to have attitudes of respect or disrespect. For example, courtesy, manners, and civility, even when we do not have the attitudes of respect that should accompany them, tend to encourage people to acquire those attitudes.7 Aristotle claimed that acting as if we are virtuous tends to lead us and others to become virtuous,8 but our reasons to show respect even when we do not have it ourselves are not just based on the good consequences that doing so are likely to bring. We might politely express respect that we do not yet have because we aspire to be the sort of person who has and shows respect to others and who stands in mutually respectful relationships with them. Although we may lack respect for some people now, acting as if we respect them is often a way of affirming, living out, and expressing our ideals of who we are striving to be. III. SYMBOLIC MEANINGS IN CLINICAL PRACTICE

Properly responding to the human dignity that we all share includes expressing respect of various kinds and not expressing certain types of disrespect to ourselves and others. I want to explore how this general framework I have described can be interpreted and applied to a particular context, namely the ways disabled patients may be regarded and treated in medical settings. Here are a few preliminary points to note. First, according to my model, expressing respect and disrespect involves making use of signs, symbols, gestures, actions, or other things that have come to mean that someone has or lacks human dignity. The meaning of something can vary across different social groups. Some things may have multiple and inconsistent meanings, while the meanings of other things may be unclear or contested. As we try to identify some of the symbolic meanings about disabled people that various aspects of contemporary medical practice might have, we should be sensitive to the long and often dark relationship between disabled people and the medical profession, including periods in which disabled people were mostly excluded from medical treatment, given inadequate medical care, institutionalized, experimented on, neglected, sterilized, lobotomized, or even euthanized because of our disabilities.9

7 8 9

See Karen Stohr, On Manners (2012); Buss, supra note 5. See Aristotle, Nicomachean Ethics (Roger Crisp trans., Cambridge University Press 2000). See Daniel J. Kevles, In the Name of Eugenics: Genetics and the Uses of Human Heredity (1985); William L. Shirer, The Rise and Fall of the Third Reich: A History of Nazi Germany (1960); James Trent, Inventing the Feeble Mind: A History of Intellectual Disability in the United States (2016).

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Second, there are some symbolic messages that we should avoid sending to anyone. We should not, for example, call anyone “human garbage” or turn away from them in utter contempt. Other messages are inappropriate to convey about certain kinds of people, such as exclaiming “What are you, blind!?” to a blind person or maliciously laughing when she bumps into things. And there are some messages that it is especially important not to send to people in social and historical contexts of disrespect, such as calling someone “dumb” because she is Deaf. Third, on the model I have described, we can express respect or disrespect when we do not have these attitudes ourselves if our actions have an established meaning that tends to reinforce attitudes of respect or disrespect in ourselves and others. Finally, there is an important moral and practical distinction between expressions of disrespect, such as mocking or talking down to others, and expressions of positive respect, such as doing small favors for them. Open contempt for other people is usually horrifying and often serves to magnify even unintentional slights. The dignity that we all share arguably gives priority to avoiding expressions of disrespect, but it also gives us reasons to value, practice, and promote positive expressions of respect as well. With these points in mind, let’s consider three aspects of medical practice to see what kinds of messages they might send about people with disabilities. IV. MEDICAL ENVIRONMENTS

The environments of doctor’s offices, hospitals, nursing homes, and other medical facilities can come to have symbolic meanings. When a second-story clinic lacks an elevator, a waiting room is not wheelchair accessible, the height of examination tables is not adjustable, signs and forms are not in accessible formats, pictures and artwork do not portray disabled people or do so only in a negative light, and nursing homes are dingy and gloomy,10 these environmental features send the message that disabled people are unwelcome, that our medical care, feelings and preferences, and moral and legal rights are less important than those of others, and that we are especially fortunate to have access to medical care at all. These messages are often magnified by how medical systems have treated disabled people in the past, such as the history of institutionalizing disabled people, sterilizing or euthanizing them, denying them access to medical care, and providing them with ineffective or harmful medical treatment. By designing, maintaining, or failing to change environments that have these meanings, medical staff express disrespectful attitudes toward disabled people when they harbor these attitudes themselves or their actions reinforce disrespectful attitudes about us. Many of these environmental features are unjust, inconvenient, or disagreeable, but disabled people often manage to navigate or overcome them. Aside 10

See Kittay, supra note 3.

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from the ways that medical environments may interfere with our rights, well-being, or medical care, they are also vehicles through which medical staff send disparaging messages to us and others about our basic worth as persons. Consider, by analogy, organizing a dinner party during which we serve meat to guests who are vegetarian, play music they dislike, keep our house uncomfortably chilly, and allow our dogs to run wild. Our guests would not only be inconvenienced in various ways, but they would also likely get the disrespectful message that we do not appropriately value them. Part of being a good host is to show respect to our guests by, in part, setting up the environment in ways that communicate to them that we value their interests, feelings, and opinions; that we attempt to take up their point of view; and that we are sensitive to relevant convictions and commitments that they have. Medical staff can arrange their environments in ways that diminish, counteract, or eliminate some of the disrespectful messages that those environments send about disabled people. They can, for example, ensure that their clinics meet appropriate accessibility standards, seek input from disabled people in ways that are consistent with our privacy, and advertise their willingness to serve disabled patients. There are difficult practical questions about which staff members are primarily responsible for making these environmental adjustments and about what staff members should do if they lack the power to do so. Simply showing that they are aware of the messages that their environments can send to disabled patients, that they are trying to make them as open and welcoming to disabled people as possible, and that they are concerned about our comfort, needs, and feelings can all go a long way in expressing respectful messages to us. A receptionist, for example, might immediately apologize to a wheelchair user for an inaccessible waiting room that she has been trying to convince her superiors to correct; and a nursing home attendant might try to spruce up the drab common areas while advocating for more extensive renovations. V. CLINICAL POLICIES AND PROCEDURES

The policies, procedures, and institutional structures of medical settings can also send disparaging or demeaning messages to disabled people. When clinics have practices in place that violate the legitimate legal rights that disabled people have to accessibility and reasonable accommodations, these practices are not only unjust, but they can also have a symbolic meaning that the rights of disabled people are unimportant. Even when the practices of a clinic are not unjust in this way, they may still express disparaging or demeaning messages about disabled people. A clinic may satisfy the letter of the law regarding its treatment of disabled patients, but do so in ways that show that its staff members do not fully endorse the spirit of those laws. Some clinics place the burden on staff members to decide, in individual cases, how to accommodate disabled patients by, for example, making space in their waiting Downloaded from https://www.cambridge.org/core. University of Glasgow Library, on 20 Jul 2020 at 08:52:18, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108622851.012

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rooms for any wheelchair users who show up, manually transporting patients to otherwise inaccessible examination tables, and reading forms for blind patients. When it is clear that a clinic lacks a comprehensive, well-conceived, and effective accessibility plan for disabled patients and instead delivers accommodations on an ad hoc basis, this sends the message that it is not worth the time and effort to organize and test procedures for securing the rights of disabled people, that the clinic is simply doing what is minimally required in order to avoid legal consequences, and that the rights of disabled people otherwise do not matter as much as the rights of others.11 Unlike hosting a dinner party in which guests do not have a moral or legal right to vegetarian or Kosher meals, patients with disabilities have moral and legal rights to accommodations, so medical staff have strong reasons to express respect for these rights by ensuring that they are set up to accommodate people with disabilities and that they are willing and ready to do so. Other clinics may exploit certain legal exceptions in ways that express the view that the moral rights of disabled people are less important than those of others. A clinic, for example, may have a policy of refusing to provide certain services to people with certain kinds of disabilities because of the risks involved to their staff members; they may be located in older buildings that do not legally have to conform to accessibility standards; or they may not install accessible equipment because of the hardships or costs of doing so. These clinics may be correct in their assessments of their legal obligations under, for example, the American with Disabilities Act, but their policies may nonetheless express the message that the moral rights disabled people have to inclusion and accommodation are not as important as those of others. These messages are enhanced when it is clear that the clinics are wealthy enough to hire and train more staff members, to move locations or to invest in accessible equipment, or when it seems that the heads of these clinics are motivated by a desire not to serve patients with certain kinds of disabilities. Clinics can eliminate, diminish, or counteract these messages by, for example, developing, publicizing, and practicing accessibility plans, making use of legal exceptions only when necessary, and honestly explaining the conflicting values that justify using those exceptions when they are legitimate. Policies and procedures relating to informed consent and autonomy more generally can also send disparaging messages about disabled people even when those practices are otherwise morally appropriate. When clinical policies, for example, give staff members some discretion about whether or how competency assessments are performed on a patient, the mannerisms, facial expressions, and tone of those who are performing or deciding whether to perform these tests often send the message that they have prejudged the case, that the test is a mere formality, or that the patient’s values or commitments are irrational.12 These messages are 11 12

See Adam Cureton, Offensive Beneficence, 2 J. Am. Phil. Ass’n 74 (2016). See Andrew M. Courtwright, “I Would Rather Die Than Live Like This:” When the Newly Disabled Refuse Life-Sustaining Treatment, in Disability in Practice: Attitudes, Policies and Relationships 134 (Adam Cureton & Thomas E. Hill, Jr. eds., 2018).

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disrespectful because they involve devaluing the autonomy, values, and choices of disabled patients in biased and prejudicial ways.13 Staff members can counteract these messages by trying to be and to appear as objective as possible when performing or deciding to perform competency assessments, as well as by emphasizing the nature and purpose of the tests. When a disabled patient is legitimately found to lack legal competence to make decisions about her medical care, clinical policies and procedures can still send disparaging messages about her and other disabled people. Suppose a physician, for example, follows formal and informal policies of discussing a patient’s symptoms and treatment only with her caregiver rather than the patient herself, ignoring or downplaying the patient’s complaints, refusing to explain the medical options under consideration in a way the patient can understand, and giving her little or no say even about relatively trivial matters, such as what time of day to perform the surgery, what color gown to wear, and when to take meals. Or, consider a caregiver at a nursing home who has responsibilities over such things as drug regiments, feeding and cleaning patients, and ensuring that they get proper exercise. Suppose the policies of this facility require or permit the caregiver to use her authority in picayune matters by, for example, selecting what flavor of ice cream to serve her patients, enforcing strict bedtimes, and restricting activities that carry even a minor risk of injury. These pedantic policies would express demeaning messages to patients that their opinions, values, and identities do not matter and that the facility is more concerned about avoiding lawsuits, handling patients easily, and keeping them calm and comfortable than it is about allowing them to express their identities, helping them to cultivate and exercise their talents and skills, and taking up their points of view. Although the caregivers in these two cases may have legitimate final authority over the patient’s treatment, the policies they are working under send the disrespectful message that the patient’s values, opinions, and feelings do not matter as much as those of others. This message, which might be sent to disabled and nondisabled patients alike through similar aspects of medical practice, is especially disrespectful to disabled people because of the long history of not believing the testimony of disabled people, of assuming we are incompetent, and of being judgmental or dismissive about our values (especially regarding our own disabilities). When we are justified in making decisions for someone else, we often have reasons to show that we are willing to understand and consider their point of view, that we value them as the author of their own identity, and that we value their moral and legitimate legal rights. A disabled patient’s views about her own medical treatment, for example, might not change her doctor’s mind, but clinics can affirm the patient’s dignity by, in part, instituting policies that require medical staff to patiently listen to 13

See Adam Cureton, Treating Disabled Adults as Children: An Application of Kant’s Conception of Respect, in Respect (Richard Dean & Oliver Sensen, eds., forthcoming).

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her ideas and concerns, make an effort to explain relevant options in terms she can understand, earnestly ask questions about the patient’s values and commitments, and give her a say in minor matters of her care.14 The interests, voice, and consent of legally incompetent people still matter in various ways, yet there is a strong temptation for medical professionals to dismiss them altogether, so it is especially important to avoid what might symbolize total dismissal of the person’s point of view and to find ways to show that it matters. And, the policies and procedures of a clinic can come to have symbolic connections to a different kind of “dignity” than the type that we all share as human beings. Human dignity, I suggested earlier, is widely regarded as an objective, incomparable, and inalienable worth that human beings can never lose. There is another, more specific way that we use the word “dignity” and its cognates, as when we speak of undignified ways of presenting oneself, indignities suffered at airport screenings, and dying with dignity. One way of thinking about dignity of this kind is that it is concerned with expressions of respect and, in particular, with the ways in which actions, activities, policies, mannerisms, and much else can take on a symbolic meaning that a person has or lacks dignity in the broader sense. Dignity in the narrow sense can be thought of as a symbolic representation of the inner worth that all human beings share. In medical contexts, many people with disabilities suffer what some regard as indignities. Being able to control one’s bladder, for example, has in some contexts come to partially symbolize the idea of a person with dignity in the broader sense. An adult urinating on himself in front of others might, in some contexts, have a symbolic meaning that he is more like a nonhuman animal than a person, and that he lacks certain moral qualities of self-control and independence that human beings should have. Needing others to help us with toileting and to feed and clean us can have similar social meanings. In some cultures, being seen with one’s hair askew, without makeup, or naked are considered shameful affronts to dignity in the narrow sense because they symbolize in certain contexts that we lack human dignity in the broader sense. Policies and procedures can thus take on these same kinds of meanings when they allow, for example, transporting patients in various stages of undress,15 openly discussing their toileting needs in earshot of others, and allowing medical staff to ignore patient requests to fix their hair or makeup. Background cultures affect symbolic meanings, so a universal requirement to express respect and to avoid expressing disrespect can apply in different ways depending on the symbolic meanings that exist. Medical staff, however, might not attach the same symbolic meanings to the bodily functions and appearance of their patients as their patients or others do. In the long run, the best approach may be to change or abandon the symbolic links 14

15

See Adam Cureton & Anita Silvers, Respecting the Dignity of Children with Disabilities in Clinical Practice, 29 HEC Forum 257 (2018). See Kittay, supra note 3.

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between, on the one hand, bodily functions and appearance and, on the other, human dignity in the broad sense, but, in the meantime, medical staff often have reasons, within certain limits, to be sensitive to these social meanings and to counteract them by helping their disabled patients live in ways that they, at least, regard as symbolic of the human dignity we all share. VI. MEDICAL STAFF

The actions, language, mannerisms, and demeanor of staff members often send various kinds of respectful and disrespectful messages to disabled people as well. Mocking, ridiculing, sneering at, or making fun of disabled people, even behind our backs, express disrespectful messages when other people harbor these attitudes or when doing so encourages disrespectful attitudes in others. When someone uses slow, high, reassuring tones, talks down to us, does not shake our hands, or fails to address us with proper titles, these actions are often ways of failing to show that they understand and appreciate the rights that disabled adults have.16 The ways that a physician talks excitedly about experimental treatments to restore hearing may express judgmental attitudes about his Deaf patient’s culture and way of life. And the grave tone that a reproduction specialist uses when he tells her patient that her fetus has Down syndrome can express the message that such people are less important or valuable than others.17 Medical staff express messages that disabled people are merely objects rather than persons by, for example, showing special curiosity about a person’s disability, even when her disability is not particularly relevant to the issue at hand. A dermatologist, for example, might ask a blind person about the nature, causes, and treatments of his visual impairment or a physical therapist might stare at or comment on someone’s facial deformity. There is a long history of medical staff and others regarding disabled people as medical oddities, which reinforces the disparaging social meaning that staring at and questioning disabled people about their conditions have, especially from physicians and others in the medical community. Medical personnel can also express the message that disabled people, especially those with significant disabilities, are simply objects to be maintained, handled, moved, etc. Whether or not they have these attitudes themselves, the language, tone of voice, and manner of caregivers at an assisted living facility, for example, often send demeaning messages about someone with significant intellectual disabilities. How they feed, bathe, and transport her shows whether they regard her as a person or as something closer to a pet, car, or piece of luggage. Again, there is a long history of 16 17

See Cureton, supra note 13. See S. Holm, The Expressivist Objection to Prenatal Diagnosis: Can It Be Laid to Rest?, 34 J. Med. Ethics 24 (2008); J. Malek, Deciding against Disability: Does the Use of Reproductive Genetic Technologies Express Disvalue for People with Disabilities?, 36 J. Med. Ethics 217 (2010).

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regarding and treating certain kinds of disabled people as less than fully human that informs and reinforces these social meanings. Members of the medical community express the message that disabled people are burdensome by, for example, sighing, rolling their eyes, or acting as if they are put out when we inquire about accessibility issues, request accommodations, or simply ask for help. Being a burden to others often carries a social meaning that the person is less valuable or important than other people, especially for disabled people who have long been stigmatized on these grounds, so medical staff have reasons to counteract these messages in the ways they interact with disabled patients. VII. PRACTICAL SUGGESTIONS

The human dignity that all persons share gives medical staff reasons not only to treat their patients justly, respect their autonomy, care for them, and not harm them, but also to have and show respect for them. The examples I described are in some cases exaggerated or controversial, but they nonetheless alert us to ways in which aspects of medical practice can have symbolic meanings that are at odds with the basic moral worth of disabled people and can serve as vehicles through which medical staff express attitudes of disrespect towards us. Avoiding or counteracting these disparaging messages is morally important, not simply as ways of preventing hurt feelings, but also as ways of striving for and living up to morally valuable relationships of mutual respect, care, and trust that are part of the ideal of a shared moral community of human beings. An important step that medical facilities can take to ensure that they are showing proper respect for their disabled patients is to solicit feedback from disabled people about whether their environment, policies, and staff might be sending offensive messages. Soliciting advice and assistance from disabled people and their families can also serve an expressive function, in addition to providing useful information about possible improvements. Medical facilities, as well as medical education programs of various kinds, should also organize ethics training programs that help medical staff to identify, avoid, and mitigate disparaging messages about disabled people that they might be sending.18 Such programs would highlight the nature and value of respect, emphasize the moral responsibilities that medical staff have to cultivate that attitude in themselves, show them how actions, mannerisms, gestures, policies, and environments can come to have symbolic meanings about the value of certain kinds of people, explain how they can express respect and disrespect through these things in ways they might not be aware of, and, perhaps most importantly, teach them how disabled people have historically fared in medical practice and the ways this history informs the symbolic meanings of contemporary medical practice. 18

See Pendo, supra note 4; Estreich, supra note 4.

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8 Disabled Bodies and Good Organs Emily A. Largent

Asymmetry between the supply of and demand for transplantable organs necessitates rationing and should ideally serve as a spur to ethical reflection and policy innovation. Transplantation policies can be animated by various principles, such as maximizing total benefits and fairness. Implicitly, these principles demand that we interrogate our beliefs about the meaning of and appropriate role for disability in the face of scarce resources. How we conceive of disabilities – whether as a “mere difference” or a “bad difference” – influences our thinking about both donation and allocation of organs and should, therefore, be made explicit. As “everyone in need of an organ transplant is disabled by their organ failure,”1 “disability” herein refers to situations in which a patient has a disability or disabilities in addition to their organ failure. “Discrimination on the basis of disability,” therefore, refers to situations in which the mere fact of the additional disability is used to justify denial of or lower priority for an organ transplant or to situations in which a facially neutral screening criterion systematically disfavors disabled people when applied.2 This definition has deliberately been drawn to exclude situations in which the disability constitutes an evidence-based absolute or relative contraindication to transplantation. Discrimination on the basis of disability also encompasses situations in which disability impermissibly influences decisions about who becomes an organ donor. Much of the literature one finds at the intersection of disability and organ transplantation focuses narrowly on discrimination against people with intellectual and developmental disabilities (I/DD) in access to transplantation, or it focuses narrowly on the acceptability of having legally incompetent individuals (i.e., people with I/DD) serve as organ donors. These are important issues. I would argue, however, that our thinking about disability and transplantation should be broader in at least two senses. 1

2

David Orentlicher, Psychosocial Assessment of Organ Transplant Candidates and the Americans with Disabilities Act, 18 Gen. Hosp. Psychiatry 5, 6S (1996). Cf. id.

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First, the discussion should be broadened to include other kinds of disability – for example, physical and sensory – as discrimination is objectionable in all its forms. Second, allocation and donation should be considered together rather than addressed as separate issues. The current framing is understandably encouraged by laws and guidelines that focus narrowly on one dimension of transplantation or the other. Nevertheless, considering supply and demand together is essential in the context of disability. Addressing either side of the equation in isolation results in an incomplete solution to the problem of discrimination in transplantation. Expanding access without increasing supply risks making a hollow promise to persons with disabilities; and facilitating donation by the disabled without increasing access risks treating people with disabilities as mere means. Transplantable organs are a social good. But are disabled bodies “bad” – and, therefore, less deserving of organs? Are disabled bodies a “good” source of organs? A commitment to ending discrimination on the basis of disability suggests that the answer to the first question is a resounding “no,” and that the answer to the second is a cautious “yes.” I. DISABLED PERSONS AND ORGAN TRANSPLANTS IN THEORY

Legal, ethical, and biological limitations restrict who can receive and who can donate organs. This, in turn, leads to organ shortages, and healthcare providers are confronted with the necessity of explicitly rationing organs. Here, I offer a high-level overview of legal structures relevant to organ transplantation generally and to the disability context more specifically. A. The National Organ Transplant Act The National Organ Transplant Act of 19843 (NOTA) established a national system for matching donor organs to potential recipients.4 NOTA does not directly address disability; rather, it instructs the Organ Procurement Transplant Network (OPTN) to establish a system “in accordance with established medical criteria” to match listed individuals with organs.5 The OPTN is also primarily responsible for developing equitable policies for organ allocation.6

3 4

5 6

Pub. L. No. 98–507, 98 Stat. 2339 (codified as amended at 42 U.S.C. §§ 273–74 (2012)). United Network for Organ Sharing (UNOS), National Organ Transplant Act Enacted 30 Years Ago (October 19, 2014), https://unos.org/national-organ-transplant-act-enacted-30-years-ago/ (last visited May 23, 2018). 42 U.S.C. § 274(b)(2). Rick K. Jones, The Gift of Life and “Diseases of Language”: Recovering a Lost Distinction in Effectuating the Purpose of the National Organ Transplant Act’s Prohibition on the Transfer of Human Organs for Valuable Consideration, 80 Temple L. Rev. 1067, 1074–75 (2007).

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B. The Americans with Disabilities Act and the Rehabilitation Act The Americans with Disabilities Act (ADA) prohibits discrimination on the basis of disability in the full and equal enjoyment of the services of any place of public accommodation, including healthcare settings.7 Yet, there is “tension within the ADA between unjustified and justified discrimination” against disabled persons.8 On the one hand, the ADA suggests that individuals should not be denied or given lower priority for a transplant on the basis of disability, nor should facially neutral criteria be used to disadvantage persons with disabilities. On the other hand, transplant programs can permissibly differentiate between candidates on the basis of their likelihood to benefit from transplantation, which may implicate a candidate’s disability. Additionally, the ADA provides for reasonable accommodations and individualized assessments. The Rehabilitation Act of 19739 prohibits discrimination against people with disabilities in activities receiving federal financial assistance. Section 504 of the Rehabilitation Act and the ADA have similar statutory language, and the courts have interpreted them similarly. In late 2016, thirty members of Congress petitioned the US Department of Health and Human Services’ Office of Civil Rights (OCR) to issue guidance prohibiting disability-based transplant discrimination.10 The members cited empirical evidence “illustrat[ing] that discrimination against people with disability in access to organ transplants does exist and is persistent.”11 They specifically asked that OCR clarify that organ transplantation discrimination violates Title II of the ADA and the Rehabilitation Act, and that people with disabilities should be provided with any auxiliary aids needed for a successful organ transplant. To date, the Department has not issued any guidance regarding transplant discrimination. C. State Antidiscrimination Laws Some states are enacting laws to prohibit discrimination in transplantation on the basis of physical or mental disability. California, New Jersey, Maryland, Massachusetts, Oregon, Delaware, Kansas, Ohio, Louisiana, Indiana, and Washington have passed such laws. Pennsylvania included antidiscrimination language in an update to its organ donor laws. Meanwhile, New York has a bill pending. Language from the California bill, which was the first to be passed, is typical and reads: 7 8 9 10

11

42 U.S.C. §§ 12101–12213. Orentlicher, supra note 1, at 6S. Pub. L. No. 93–112, 87 Stat. 355 (codified as amended in scattered sections of 29 U.S.C.). Letter to Jocelyn Samuels, Director, Office for Civil Rights, HHS (October 12, 2016), www.scribd.com /document/327914350/2016-10-12-Members-Letter-HHS-OCR-Organ-Transplant-Discrimination (last visited May 23, 2018). Id. at 1.

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No hospital, physician and surgeon, procurement organization, or other person shall determine the ultimate recipient of an anatomical gift based upon a potential recipient’s physical or mental disability, except to the extent that the physical or mental disability has been found by a physician and surgeon, following a case-bycase evaluation of the potential recipient, to be medically significant to the provision of the anatomical gift.12

These state laws replicate the tension found in the ADA. Covered entities cannot deny a transplant solely on the basis of a disability; nevertheless, they are allowed to consider the disability when making recommendations related to organ transplantation. While these laws are symbolically significant, their relatively recent arrival on the scene makes it unclear how they will be used and whether they will in fact improve the transplant experience for people with disabilities. D. The Uniform Determination of Death Act The “dead donor rule” is an “ethical and legal constraint that holds that doctors cannot remove vital organs necessary to keep bodies alive from patients until they are dead.”13 Under the Uniform Determination of Death Act (UDDA),14 drafted by the National Conference of Commissioners of Uniform State Laws (NCCUSL) and adopted by most states,15 “an individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead.”16 This determination must be made in accordance with accepted medical standards.17 The UDDA does not address itself to organ donors. However, in light of the dead donor rule, the UDDA allows for organ donation of vital organs only after cardiac death or brain death. E. The Uniform Anatomical Gift Act By 1968, forty-two states had adopted some form of organ donation statute allowing individuals to bequeath transplantable organs.18 These laws, which did little more than restate common law, were criticized as inadequate and confusing. NCCUSL responded to these critiques by promulgating the Uniform Anatomical Gift Act (UAGA).19 By 1972, all fifty states and the District of Columbia had enacted it in one 12 13

14 15 16 17 18

19

Cal. Health & Safety Code § 7151.35(a) (West 2008). Seema K. Shah, Piercing the Veil: The Limits of Brain Death As a Legal Fiction, 48 U. Mich. J.L. Reform 301, 326 (2015). Unif. Determination of Death Act (Unif. Law Comm’n 1980). Shah, supra note 13, at 308. Unif. Determination of Death Act § 1 (Unif. Law Comn’n 1980). Id. Theodore Silver, The Case for a Post-Mortem Organ Draft and a Proposed Model Organ Draft Act, 68 B.U. L. Rev. 681, 692 (1988). Unif. Anatomical Gift Act (Unif. Law Comm’n 2006); see Silver, supra note 19, at 693.

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form or another.20 The 1968 UAGA was revised in 1987 and again in 2006. Not all states have enacted these revisions and, as a result, the anatomical gift laws of the states are no longer uniform. Nevertheless, it is worth noting that the UAGA does not address disability and reflects that the allocation of organs is administered exclusively under OPTN policies.21 F. Court Decisions Regarding Living Organ Donation by Incompetent Persons Individuals adjudged incompetent due to I/DD are not legally permitted to make decisions regarding medical treatment for themselves. Instead, they depend on surrogate decision-makers to grant consent on their behalf. Yet, unlike, for example, being treated with antibiotics for an infection, organ donation is nontherapeutic. That is, there is no direct medical benefit to the living donor; there may, however, be nonmedical benefits to the donor. No laws, state or federal, address whether – or under what circumstances – surrogates should be allowed to consent to organ donation on behalf of a disabled individual. Thus, it has typically fallen to state courts to make these determinations when the question arises. In Strunk v. Strunk,22 for example, the parents of Jerry Strunk – who was twentyseven and had an IQ of thirty-five – sought to have one of his kidneys removed and donated to his competent brother, Tommy. The court authorized the donation, reasoning that it would be “beneficial to Jerry because . . . his well-being would be jeopardized more severely by the loss of his brother than by removal of a kidney.”23 But, in In re Richardson,24 the court determined that loss of a kidney would be against the best interests of Roy Richardson – who had “a mental age of 3 or 4 years”25 – despite the fact that the intended recipient, his sister, would eventually be his caregiver. The court pointed to the availability of dialysis as an alternative and to disagreement between Roy’s parents about the donation. It is, however, a minority of cases in which donation has been stopped. Although no consistent standards have emerged, it is possible to identify common themes. Courts will generally allow donation if: (1) the recipient is likely to benefit from transplantation; (2) there is no reasonably available alternative treatment that offers the recipient a comparable prospect of medical benefit; (3) there is no equally qualified capacitated potential donor; (4) the risks to the incompetent donor are minimized and are reasonable in relation to the expected benefits to the recipient;

20 21 22 23 24 25

Silver, supra note 19, at 693. Unif. Anatomical Gift Act § 11(k) & cmt. (Unif. Law Comm’n 2006). 445 S.W.2d 145 (Ky. 1969). Id. at 146. 284 So. 2d 185 (La. Ct. App. 1973). Id.

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(5) the donor has a close personal relationship with the intended recipient; and (6) there is consensus among family members in favor of donation.26 In summary, existing law tends to focus narrowly on either organ donation or organ allocation, and few of these laws explicitly address disability. Those that do reject discrimination on the basis of disability while also allowing for disability to be considered as part of a holistic evaluation of the candidate’s suitability for donation. II. DISABLED PERSONS AND ORGAN TRANSPLANTS IN PRACTICE

In recent years, alleged instances of discrimination against people with disabilities in organ transplantation, described in greater detail below, have captured the public’s attention. This explains, in part, growing legislative interest in the issue, evidenced by state laws – which, with the exception of California’s law, were passed in or after 2013 – and the 2016 congressional request for OCR guidance on discrimination in transplantation. In this Part, I will highlight both anecdotes and more rigorous empirical evidence about discrimination on the basis of disability, which appears to be pervasive and persistent. A. Organ Allocation Existing legal structures grant transplant programs wide latitude in determining patient selection criteria. The processes of decision-making regarding transplant eligibility for individual transplant programs have not been the subject of national policy. Consequently, there is marked variation with respect to how disability, particularly I/DD, is factored into eligibility determinations at different transplant centers. In a 1993 survey of 278 adult transplant programs, more than two-thirds of the cardiac and liver programs surveyed viewed intellectual disability (IQ < 70) as either a relative or absolute contraindication to transplantation; when the intellectual disability was described as “severe” (IQ < 50), the figure exceeded three-quarters.27 These data must be weighed carefully at present, as they do not reflect the effects of subsequent events, particularly the case of Sandra Jensen, on transplant evaluation practices. In 1995, two California transplant centers refused to approve Jensen, a 34year-old woman with Down syndrome, for a combined heart–lung transplant. One

26

27

Cf. Am. Acad, of Pediatrics Comm, on Bioethics, Children as Hematopoietic Stem Cell Donors, 125 Pediatrics 392 (2010). James L. Levenson & Mary Ellen Olbrisch, Psychosocial Evaluation of Organ Transplant Candidates: A Comparative Survey of Process, Criteria, and Outcomes in Heart, Liver, and Kidney Transplantation, 34 Psychosomatics 314 (1993).

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of the hospitals eventually relented in the face of public outcry, and Jensen became the first person with an intellectual disability to receive a heart–lung transplant. Nearly a decade later, in 2004, disabled individuals and their families surveyed by the National Working Group on Disability and Transplantation reported discriminatory practices in both referral and evaluation for transplantation.28 Then, in 2013, the Autistic Self Advocacy Network (ASAN) issued a policy brief calling for further action to address the issue of discrimination against the intellectually disabled in organ allocation.29 In support of its position, ASAN pointed to patients like Amelia Rivera and Paul Corby. Amelia and Paul’s mothers both drew widespread media attention in 2012 when they alleged that their children were denied transplants because of their I/DD. Amelia Rivera has Wolf-Hirschhorn syndrome, a rare genetic disorder in which missing chromosomal material causes mental disabilities. Rivera’s parents alleged that physicians at the Children’s Hospital of Philadelphia (CHOP) told them that their daughter was not a candidate for renal transplantation because of her “mental retardation” and that – even if they had a family member who wanted to donate a kidney – CHOP would not perform the operation.30 CHOP denied “disqualify[ing] transplant patients on the basis of intellectual ability.”31 Nevertheless, more than 51,000 individuals signed a change.org petition demanding that CHOP “allow the life saving [sic] transplant four-year-old Amelia Rivera needs to survive.”32 Ultimately, Rivera received a living donor kidney transplant from her mother.33 Paul Corby – two decades older than Amelia – has both a congenital heart defect and autism.34 In 2011, he applied to the University of Pennsylvania’s heart transplant program but was rejected in light of his “psychiatric issues, autism, the complexity of the process . . . and the unknown and unpredictable effect of steroids on behavior.”35 28

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Nat’l Working Group on Disability & Transplantation, Summary Report of Individual and Family Disability Survey (March 11, 2004). Ari Ne’eman, Steven Kapp & Caroline Narby, Organ Transplantation and People with I/DD: A Review of Research, Policy, and Next Steps, Autistic Self Advocacy Network (March 2013), https:// autisticadvocacy.org/wp-content/uploads/2013/03/ASAN-Organ-Transplantation-Policy-Brief_3 .18.13.pdf (last visited May 23, 2018). Id. Ryan Jaslow, Children’s Hospital of Philadelphia Apologizes to Rivera Family Over Kidney Transplant Flap, CBS News (February 16, 2012), www.cbsnews.com/news/childrens-hospital-of-philadelphiaapologizes-to-rivera-family-over-kidney-transplant-flap/ (last visited May 23, 2018). Sunday Stilwell et al., Allow the Kidney Transplant Amelia Rivera Needs to Survive, www.change.org/p/ children-s-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-rivera-needs-to-survive (last visited May 23, 2018). Kim Painter & Nanci Hellmich, Amelia Rivera Gets Kidney After Transplant Debate, USA Today (July 30, 2013), www.usatoday.com/story/news/nation/2013/07/30/amelia-rivera-kidney/2600551/ (last visited May 23, 2018). Rheana Murray, 23-Year-Old Pennsylvania Man with Autism Denied Heart Transplant by Hospital, NY Daily News (August 16, 2012), www.nydailynews.com/life-style/health/23-year-old-pennsylvaniaman-autism-denied-heart-transplant-hospital-article-1.1137708 (last visited May 23, 2018). Lenny Bernstein, People with Autism, Intellectual Disabilities Fight Bias in Transplants, Washington Post (March 4, 2017), www.washingtonpost.com/national/health-science/people-with-autism-

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Corby’s mother began a change.org petition asking the Penn Medicine heart transplant committee to change its mind that accumulated more than 295,000 signatures.36 Corby, who was also assessed at and denied a transplant by the Mayo Clinic in Rochester, Minnesota, has not yet received a transplant.37 Pennsylvania’s antidiscrimination language, mentioned briefly above, came from a bill popularly known as “Paul’s Law,” after Corby.38 It is impossible to say with certainty on the basis of media accounts that either Rivera or Corby actually experienced discrimination on the basis of disability. Nonetheless, Rivera and Corby put names and faces to a problem that has empirically been shown to exist. B. Organ Donation Systematic evidence of discrimination on the basis of disability in organ donation is lacking. Anecdotally, however, one might discern discrimination on the basis of disability. Not Yet Dead, a national disability rights group, asserts that it has “long fought for equal protection for disabled people when it comes to being improperly identified as a potential donor.”39 Testifying in support of Massachusetts’ antidiscrimination bill, activist John Kelly stated that the OPTN had previously “proposed a plan to approach as possible donors newly spinal cord injured people receiving ventilation. The network wanted go [sic] to encourage people to decline the treatment and instead donate organs as part of a heroic suicide. We helped organize to stop the plan.”40 Although it is unclear precisely what proposal Kelly was objecting to, the OPTN has issued a white paper discussing imminent death donation – “recovery of a living donor organ immediately prior to an impending and planned withdrawal of ventilator support expected to result in the patient’s death” – and therein offers the example of “an individual with a high cervical spinal cord injury.”41

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intellectual-disabilities-fight-bias-in-transplants/2017/03/04/756ff5b8-feb2-11e6-8f41-ea6ed597e4ca _story.html?utm_term=.21fc7d19e9a4 (last visited May 23, 2018). Karen Corby, Help My Autistic Son Get a Life-Saving Heart Transplant, www.change.org/p/help-myautistic-son-get-a-life-saving-heart-transplant (last visited May 24, 2018). Danielle Richards, The Defibrillation of NOTA: How Establishing Federal Regulation of Waitlist Eligibility May Save Organ Transplant Patients with Disabilities from Flat-Lining, 87 S. Cal. L. Rev. 151, 183–84 (2013) (describing the assessment and grounds for denial). Pennsylvania State Senator John Sabatina introduced “Paul’s Law,” S. 108, 2017 Gen. Assemb., Reg. Sess. (Pa. 2018), in an effort to outlaw discrimination in transplant decisions. Diane Coleman, John Kelly Testifies for ASAN Bill in MA Prohibiting Disability Discrimination in Organ Transplant Eligibility, Not Dead Yet (October 21, 2015), http://notdeadyet.org/2015/10/johnkelly-testifies-for-asan-bill-in-ma-prohibiting-disability-discrimination-in-organ-transplanteligibility.html (last visited May 24, 2018) (quoting Kelly’s testimony). Id. OPTN/UNOS Ethics Committee, Public Comment Proposal: Living Organ Donation by Persons with Certain Fatal Diseases Who Meet the Criteria to Be Living Organ Donors (July 2017), https:// optn.transplant.hrsa.gov/media/2218/ethics_pcwhitepaper_201707.pdf (last visited May 24, 2018).

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It is hard to know the degree to which overt and implicit discrimination play a role in transplantation. More than twenty years after Sandra Jensen’s case, “there remains a surprising paucity of data.”42 Yet, these anecdotes and statistics paint a picture in which all organs are viewed as good, but disability is often viewed as a bad difference. This conception of disability, in turn, leads to discrimination: reduced access but also increased willingness to look on the disabled as a source of organs. Troublingly, the result looks very much like exploitation. What would our transplant policies look like if we saw disability as a mere difference? III. POLICY OPTIONS

Any policy addressing discrimination on the basis of disability in organ transplantation should define disability broadly and look at both access to transplantation and ability to donate. Although increasing access and increasing donation are worthwhile aims in and of themselves, they are best pursued together. As I stated at the outset, expanding access to the waiting list without increasing organ supply is something of an empty promise; and promoting donation without increasing access risks exploitation. The 2013 HIV Organ Policy Equity (HOPE) Act,43 which directs the Department of Health and Human Services and OPTN to establish standards for transplantation of HIV-positive organs, offers a helpful – albeit highly imperfect – analogy for how supply and demand issues can be addressed with respect to a group subject to widespread discrimination. It was noted that the HOPE Act extended opportunities for HIV-positive individuals to receive organs but also to donate organs for the first time, which “for a group of individuals all too familiar with medically and socially inconsistent stigma . . . can indeed offer real hope.”44 How might something comparable be accomplished for people with disabilities? A. Ensuring Adherence to Existing Antidiscrimination Law Using disability as an absolute contraindication to transplantation or as a reason to put someone lower on the waiting list is likely a violation of the ADA, as well as of state antidiscrimination laws. Consistent with the ADA, the United Network for Organ Sharing (UNOS) affirmed in 2007 that “patients with disabilities should not be excluded from consideration for transplant solely by virtue of their disability” and emphasized the importance of individualized assessments for transplant 42

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Kim J. Overby & Joseph J. Fins, Organ Transplantation for Individuals with Neurodevelopmental Disorders: Sandra Jensen’s Legacy, 25 Cambridge Q. Healthcare Ethics 272, 276 (2016). Pub. L. No. 113–51, 127 Stat. 579 (2013) (codified at 18 U.S.C. § 1122 and 42 U.S.C. 273–74). UNOS News Bureau, At One Year Anniversary, HOPE Act Impact Continuing to Be Assessed (November 21, 2016), https://optn.transplant.hrsa.gov/news/at-one-year-anniversary-hope-act-impactcontinuing-to-be-assessed/ (last visited May 24, 2018).

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eligibility.45 Yet, high profile cases, like those of Amelia Rivera and Paul Corby, suggest that negative attitudes toward disability continue to play a role in organ allocation. As noted above, transplant centers retain significant discretion in listing decisions. A key challenge is that centers can often provide a nondiscriminatory – though perhaps disability-related – explanation for a decision not to list a potential transplant recipient. And patients may be unable to establish that the proffered explanation is merely pretext for behavior motivated by discrimination. Yet, some common arguments advanced to deny transplants to persons with disabilities can be debunked. Proponents of using I/DD as a contraindication to transplantation often cite disabled persons’ putative inability to consent to transplantation or adhere to complicated post-transplant medical regimens as justification for their position. Neither explanation, however, can justify using disability as a determinative factor in organ allocation in all cases. First, although many transplant candidates with I/DD lack the necessary capacity to consent to transplantation, there is broad acceptance of surrogates making decisions on their behalf in other medical contexts. There is no compelling reason why transplants should be handled differently, particularly in light of evidence which, while limited, suggests people with I/DD can receive long-term benefits from transplantation.46 Moreover, this argument appears wholly disingenuous when one considers that courts have allowed surrogates to consent to organ donation by disabled persons. Donation, recall, is never medically indicated and offers no direct medical benefit. Consistency quite simply demands that surrogates should be able to consent to both donation and transplantation. Second, post-transplant noncompliance impairs quality of life and life span; yet, evidence does not suggest that noncompliance occurs at higher rates among individuals with I/DD than among the general transplant population. To the contrary, although such data should be interpreted with caution in light of small sample sizes, individuals with I/DD appear able to achieve adequate compliance with the support of caregivers.47 Evidence on outcomes is relatively meager, and more evidence is needed to determine under what circumstances, if any, the presence of a disability actually reduces the chance that the patient will receive a significant medical benefit from a transplant. UNOS should require that more data be collected on transplants in people with disabilities. Even if that evidence suggests that disability may, on average, lead to worse outcomes, the ADA requires that transplant centers provide patients with an 45

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Overby & Fins, supra note 43, at 275 (quoting OPTN/UNOS, Report of the OPTN/UNOS Ethics Committee to the Board of Directors (June 26, 2007)). Emma Samelson-Jones, Donna M. Mancini & Peter A. Shapiro, Cardiac Transplantation in Adult Patients with Mental Retardation: Do Outcomes Support Consensus Guidelines?, 53 Psychosomatics 133, 136 (2012). Marilee A. Martens, Linda Jones & Steven Reiss, Organ Transplantation, Organ Donation, and Mental Retardation, 10 Pediatric Transplantation 658, 660 (2006).

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individualized assessment. Stanford’s experience suggests that more individuals with disabilities will be listed and that families will be more accepting of decisions not to list if the disabled person is evaluated holistically.48 Additionally, more steps should be taken to ensure that individuals being evaluated for listing are given reasonable accommodations as required by the ADA. UNOS should require physicians and hospitals explicitly to consider the possibility of accommodations when evaluating patients for listing. Moreover, there should be an administrative appeal process for patients and families who believe that they have experienced discrimination.49 Ultimately, it may be best to remove some (or all) local control from transplant centers to allow for consistent, transparent, ethically defensible decisions. B. Permitting Living Organ Donation by Incompetent Persons Courts have, largely, gotten the relevant decision-making criteria for living organ donation by persons with I/DD, enumerated above, right. It would, however, be desirable to codify the relevant balancing test. The Little court concluded: “legislators are better qualified to conduct the necessary investigations which will yield a system of rules to adequately protect . . . incompetents from exploitation without denying them such benefits as competent adults may derive from the organ-donating experience.”50 Any such law should emphasize the importance of the disabled person’s assent, and it is preferable to err on the side of prohibiting donation than to be overly permissive, given that donation is both nontherapeutic and irreversible. C. Revise the Dead Donor Rule Brain dead individuals, those falling into the second UDDA category, make ideal organ donors, as their organs continue to receive oxygenated blood from their stillbeating heart. Brain death is a neat way of resolving a paradox: the donor must by our current legal and ethical standards be dead, but to be successfully transplanted, the organ itself must be alive. The organs of patients who experience cardiac death, those falling in the first UDDA category, begin to suffer from ischemia.51 As a result, the yield of organs after cardiac death is generally less favorable than after brain death. 48

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See generally Jose R. Maldonado et al., The Stanford Integrated Psychosocial Assessment for Transplantation: A Prospective Study of Medical and Psychosocial Outcomes, 77 Psychosomatic Med. 1018 (2015). Scott D. Halpern & David Goldberg, Allocating Organs to Cognitively Impaired Patients, 376 New Eng. J. Med. 299, 301 (2017) (describing the contours of such a system). Little v. Little, 576 S.W.2d 493, 500 (Tex. Ct. Civ. App. 1979). See generally James L. Bernat et al., Report of a National Conference on Donation After Cardiac Death, 6 Am. J. Transplantation 281, 284 (2006) (discussing warm ischemic time).

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Despite cogent and convincing arguments that brain death is a legal fiction,52 the dead donor rule has persisted. The idea of brain death is itself the brainchild of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death. One of the Committee’s purposes in defining a new criterion for death was to smooth the way for obtaining transplantable organs.53 “Once brain death is recognized as a social construction not grounded in biological reality,”54 it is possible to assess whether a different definition would be more advantageous for organ donors and organ recipients. Conversations about the acceptability of taking organs from anencephalic infants, dating to the 1980s and 1990s, included discussions of altering the standard brain death criteria to include anencephalic infants.55 The narrowness of the move was recognized as problematic even at the time. Scholars argued that this was a slippery slope, as it was not possible to adequately distinguish anencephalic babies from “severely damaged infants [and] . . . adults in permanent vegetative states.”56 Others pointed to the “logical inconsistency” of making exceptions for some while the law still prohibited taking organs from others.57 Of course, there was a logical inconsistency. There are sound ethical, legal, and policy arguments against creating an exception to the dead donor rule for individuals with a profound, life-limiting disability while upholding it for people who are “normal.” Suggesting that we can permissibly kill disabled infants in order to address the organ shortage but cannot kill others is an objectionable form of discrimination; it would be exploiting the disabled for the benefit of the abled. Yet, the inability to make a principled distinction between anencephalic infants and others nearing the end of life does not necessarily lead to the conclusion that we should uphold the UDDA or the dead donor rule. It could be used just as strongly to argue in favor of revising the UDDA, the dead donor role, or both. And revision is precisely what I favor. All people approaching the end of life – not simply infants with life-limiting conditions – should generally be allowed to donate if they are otherwise suitable donors and they (or a surrogate) wish to do so. Of course, we might reasonably hypothesize that disabled persons would disproportionately become eligible for organ donation if this change was made. But opening the possibility of donation to all individuals nearing the end of life, rather 52

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See generally Shah, supra note 13, passim; Seema K Shah, Robert D. Truog & Franklin G. Miller, Death and Legal Fictions, 37 J. Med. Ethics 719 (2011); Robert D. Truog & Franklin G. Miller, Changing the Conversation About Brain Death, 14 Am. J. Bioethics 9 (2014). Ad Hoc Comm. of the Harvard Medical School to Examine the Definition of Brain Death, A Definition of Irreversible Coma, 205 JAMA 337 (1968). Truog & Miller, supra note 53, at 9. Paul Byrne et al., Use of Anencephalic Newborns As Organ Donors, 10 Pediatrics & Child Health 225 (2005). John D. Arras & Shlomo Shinnar, Anencephalic Newborns As Organ Donors: A Critique, 259 JAMA 2284, 2285 (1988). D. Alan Shewmon et al., The Use of Anencephalic Infants As Organ Sources: A Critique, 261 JAMA 1773, 1775 (1989).

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than inappropriately discounting the value of disabled lives alone, will promote autonomy more broadly. For instance, nondisabled patients and their families have expressed a desire to donate organs (e.g., after a catastrophic accident), and this right should be recognized.58 Patients with capacity have broad discretion to refuse treatment, including lifesaving and life-sustaining interventions. Once individuals have decided to withdraw care or otherwise end their life, allowing them to donate organs – even if donation becomes the proximate cause of their death – is a way of respecting their preferences. Allowing them to donate their organs does not change the ultimate outcome, though it does change the means by which the outcome is reached. This edges us into debate over the acceptability – ethical and legal – of euthanasia. Once we recognize brain death is a legal fiction, however, the distinction between killing and letting die (particularly for purposes of organ donation) simply cannot bear the weight that some want it to.59 Many in the disability community strongly oppose legalizing physician-assisted death because, they argue, such laws imply that persons with disabilities do not have as much dignity as persons without disabilities.60 Moreover, there are concerns that persons with disabilities may be particularly vulnerable to pressure to end their lives because of the perceived burden they place on their families. Here, the disability critique of assisted suicide is apparently at odds with the disability rights emphasis on autonomy and self-determination. I favor resolving this tension in favor of autonomy and self-determination, albeit with sufficient procedural protections. A wholesale rethinking of the dead donor rule as it applies to all people, irrespective of disability, will promote autonomy, reduce discrimination on the basis of disability, and increase the supply of organs. IV. CONCLUSION

Defensible limits on who might receive transplantable organs suggest analogous arguments and concomitant protections for potential organ donors. It is desirable to increase the pool of potential donors, if ethically permissible, as we expand the pool of potential recipients. Addressing disability in both the supply and demand sides of organ transplantation has the potential to benefit the disabled and nondisabled alike.

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Robert D. Truog, Franklin G. Miller & Scott D. Halpern, The Dead-Donor Rule and the Future of Organ Donation, 369 New Eng. J. Med. 1287 (2013). Michael Potts & David W. Evans, Does it Matter That Organ Donors are Not Dead? Ethical and Policy Implications, 31 J. Med. Ethics 406 (2005). See, e.g., Not Dead Yet Disability Activists Oppose Assisted Suicide as a Deadly Form of Discrimination, Not Dead Yet, http://notdeadyet.org/assisted-suicide-talking-points (last visited May 24, 2018).

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9 Humanizing Clinical Care for Patients with Disabilities Omar Sultan Haque and Michael Ashley Stein

Protecting patients with disabilities against discrimination in the provision of healthcare, especially violations of their civil or human rights, requires an understanding of the common biases that undermine equal treatment in clinical, diagnostic, and therapeutic contexts. Nevertheless, this topic is rarely acknowledged in legal or social scientific studies of bias in healthcare decision-making. Consequently, prejudices against persons with disabilities – “ableism” – in these settings remain prevalent and unaddressed. This chapter provides a framework that seeks to humanize healthcare for patients with disabilities by thwarting prevalent biases that undermine ethical caregiving in clinical settings. Section I provides a brief overview of current legal and bioethical principles and standards for the equitable clinical care of patients with disabilities. Section II characterizes some of the more common stigmatizing and dehumanizing biases that patients with disabilities face in healthcare settings, especially prejudices held by clinicians concerning the intentions, experiences, agency, rationality, fears, and expectations of disabled patients. Next, Section II explicates how those false preconceptions impact a variety of diagnostic and therapeutic decisions arising from the interaction of persons with disabilities with their caregiving clinicians. Section III then suggests educational and clinical interventions to improve the way clinicians in training conceptualize, recognize, and prevent biased care delivery for their patients with disabilities. The chapter brings together insights from disability rights, health law, bioethics, disability studies, clinical medicine, and the social scientific study of stigma, dehumanization, prejudice, and discrimination. As a result, we provide an innovative interdisciplinary conceptualization of the problems regularly experienced by persons with disabilities within the clinical arena, consider the causes of this unequal treatment while offering initial nomenclature to capture these effects, and develop and propose interventions to be tested by clinical and educational researchers to improve the everyday care of patients with disabilities. 117 Library, on 21 Jul 2020 at 02:25:58, subject to the Cambridge Core Downloaded from https://www.cambridge.org/core. University of Glasgow terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108622851.014

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Omar Sultan Haque and Michael Ashley Stein I. LEGAL AND BIOETHICAL STANDARDS

In the United States, the Rehabilitation Act of 1973,1 the Americans with Disabilities Act (ADA),2 and the Affordable Care Act (ACA)3 are the primary federal statutes prohibiting discrimination against persons with disabilities in the provision of healthcare. Broadly speaking, and with significant overlap, the Rehabilitation Act of 1973 applies to public and private recipients of federal funding (most prominently, hospitals and research laboratories). The ACA, through Title II, focuses on state-based programs (for instance, medical and nursing schools) and, via Title III, on a range of private providers of medical care over a minimal size (e.g., pharmacies, physicians’ offices, and HMOs). These federal statutes mandate that healthcare providers do not discriminate against persons with disabilities by limiting the treatment they provide relative to nondisabled persons; clinicians are likewise required to provide reasonable accommodations to enable the equal participation of their disabled patients.4 Informed consent to healthcare treatment is an axiomatic legal requirement as well as a core bioethical value in American clinical settings. Nevertheless, informed consent has had questionable utility for certain patients with disabilities, especially those with intellectual or psychosocial disabilities. This is because persons with disabilities are often misperceived as lacking capacity to consent to their own healthcare, resulting in unwarranted paternalism, such as hastily being placed into guardianship. Especially in its plenary form, guardianship replaces the legal power of disabled persons to enforce their own decisions with that of appointed decision-makers. Further, the characterization of persons with disabilities as a “vulnerable” population, however well-meaning, further fosters such protectionist attitudes.5 The above legal and bioethical standards, along with their enactment and enforcement, constitute social policy ideals that too often go unrealized in clinical contexts.6 One source of this moral and public health failure in clinical contexts is an often latent, although sometimes explicit, hierarchy in the full dignity and humanity attributed to patients with disabilities relative to nondisabled patients.7 1 2 3 4

5

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See Rehabilitation Act, Pub. L. No. 93–112, 87 Stat. 355, 394 (1973). See Americans with Disabilities Act, Pub. L. No. 101–336, 104 Stat. 327 (1990). See Patient Protection and Affordable Care Act, Pub. L. No. 111–148, § 1557, 124 Stat. 119, 260 (2010). See Michael Ashley Stein et al., Disability & Health Law, in The Oxford Handbook of U.S. Health Law 375 (I. Glenn Cohen et al. eds., 2016). See Michael Ashley Stein et al., Health Care & the UN Disability Rights Convention, 374 The Lancet 1796 (2009). See Cynthia G. Peacock et al., Health Care for Americans with Disabilities – 25 years after the ADA, 373 New Eng. J. Med. 892 (2015); Lisa I. Iezzoni, Eliminating Health; Health Care Disparities Among the Growing Population of People with Disabilities, 30 Health Aff. 1947 (2011); Amanda Reichard et al., Health Disparities Among Adults with Physical Disabilities or Cognitive Limitations Compared to Individuals with No Disabilities in the United States, 4 Disability and Health J. 59 (2011); Charles E. Drum et al., Recognizing & Responding to the Health Disparities of People with Disabilities, 3 Cal. J. Health Promotion 29 (2005). See Susan T. Fiske, Envy Up, Scorn Down: How Status Divides Us, 65 Am. Psychologist 698 (2010) (hereinafter Envy Up); Susan T. Fiske et al., (Dis)respecting Versus (Dis)liking: Status and

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Specifically, social processes variously termed stigma8 or dehumanization9 construct a clinical pyramid of normative attention and presumed moral worth within which persons with disabilities are far from the apex.10 These distorted representations of the full humanity of individuals with disabilities in turn give rise to characteristic biases in clinical decision-making in diagnosis, prognosis, and treatment. II. BIASES AND UNEQUAL CARE

Empirical evidence overwhelmingly demonstrates unequal health outcomes for persons with disabilities relative to those without disabilities.11 Historically, decreasing health disparities for disabled persons has focused on improving access to and accommodations within healthcare settings.12 We take a complementary approach by aiming to understand the social psychological biases underlying the perception of persons with disabilities in clinical spaces and how those prejudices contribute to health disparities for that population. The extent and impact of stereotypes and prejudices against individuals with disabilities are systematic and plentiful.13 However, due to space constraints, we explicate and describe the implications of only three specific manifestations of ableism. Two are infantilizing prejudices: an “ineffectual bias” in which disabled persons are viewed as being low on agency and competence, and a “fragile friendliness bias” in which disabled persons are perceived as high in subjective experience and warmth. A “catastrophe bias” forms a third prejudice which leads observers to catastrophize the mental states of disabled persons. This troika of preconceptions collectively creates a mixed and unique kind of ableism within the clinical sphere. It is neither frank animosity nor glorification, but instead a heterogeneous conglomeration of paternalism, projection, pity, low

8 9

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Interdependence Predict Ambivalent Stereotypes of Competence and Warmth, 55 J. Soc. Issues 473 (1999) (hereinafter Ambivalent Stereotypes); Susan T. Fiske et al., A Model of (Often Mixed) Stereotype Content: Competence & Warmth Respectively Follow From Perceived Status & Competition, 82 J. Personality & Soc. Psychol. 878 (2002) (hereinafter Competence & Warmth); John F. Dovidio et al., Implicit Attitudes and Discrimination Against People with Physical Disabilities, in Disability and Aging Discrimination 157 (Richard L. Wiener & Steven L. Willborn eds., 2011); Dana S. Dunn, Challenges: Stigma, Stereotyping, and Disability, in The Social Psychology of Disability 38 (2015). See Bernice A. Pescosolido & Jack K. Martin, The Stigma Complex, 41 Ann. Rev. Soc. 87 (2015). See Omar Sultan Haque & Adam Waytz, Dehumanization in Medicine: Causes, Solutions, & Functions, 7 Persp. Psychol. Sci. 176 (2012). See Envy Up, supra note 7; Ambivalent Stereotypes, supra note 7; Competence & Warmth, supra note 7; Dovidio et al., supra note 7; Dunn, supra note 7. See Peacock et al., supra note 6; Iezzoni, supra note 6; Susan M. Havercamp et al., Health Disparities Among Adults with Developmental Disabilities, Adults with Other Disabilities, and Adults Not Reporting Disability in North Carolina, 119 Pub. Health Rep. 418 (2004). See Tara Lagu et al., The Axes of Access – Improving Care for Patients with Disabilities, 370 New Eng. J. Med. 1847 (2014); Drum et al., supra note 6. See Ambivalent Stereotypes, supra note 7; Competence & Warmth, supra note 7; Dovidio et al., supra note 7; Dunn, supra note 7.

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expectations, infantilization, and assuming the worst possible circumstances. All of this often happens, ironically, with the best of intentions. Understanding these prejudices is important for comprehending the nature of ableism while also clarifying the negative impact of biases in the clinical realm. This explication likewise helps predict what kinds of interventions may diminish the negative health impact of ableism in the lived experiences of persons with disabilities. As compared to the study of racial, ethnic, gender, class, and other biases, the study of ableism in clinical settings is still nascent. What is clear from the study of non-disability-specific clinical biases, however, is instructive for considering clinical biases against the disabled. The non-disability biases observed in general social life are reliably found in clinical settings, and the hospital walls do not constitute a magical barrier that filters away these embedded and negative social constructions.14 Likewise, there is no reason to believe anything should be different regarding ableism. Table 9.1 illustrates how our three identified central biases likely manifest in the clinical domain to multiple effects. Upon first meeting, they act as a spray of altered propensities that form a perpetual and motley mist between clinician and patient. The biases thus alter the way clinicians – including physicians, nurses and other allied health professionals, and students – understand symptoms, formulate diagnoses, prognoses, and treatments. A. Ineffectual Bias A recurrent finding in studies of how persons with disabilities are perceived both within and beyond healthcare settings is a bias towards viewing the group as being low in agency and competence.15 This ineffectual bias is also found in narratives of the experiences of persons with disabilities, which show that people observing a disabled table 9.1 Clinical biases and their impact on decision making Bias

Impact on clinical decision making

1. Ineffectual bias 2. Fragile friendliness bias

Clinical paternalism bias Clinical fragility bias Clinical saintliness bias Clinical pessimism bias

3. Catastrophe bias 14

15

See Augustus A. White with David Chanoff, Seeing Patients: Unconscious Bias in Healthcare (2009); Irene V. Blair et al., Unconscious (Implicit) Bias and Health Disparities: Where Do We Go From Here?, 15 Permanente J. 71 (2011); Alexander R. Green et al., Implicit Bias Among Physicians & Its Prediction of Thrombolysis Decisions for Black & White Patients, 22 J. Gen. Internal Med. 1231 (2007); Janice A. Sabin et al., Physician Implicit Attitudes & Stereotypes About Race & Quality of Medical Care 46 Med. Care 678 (2008). See Envy Up, supra note 7; Ambivalent Stereotypes, supra note 7; Competence & Warmth, supra note 7; Dovidio et al., supra note 7; Dunn, supra note 7.

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individual tend to notice markers of impairment (e.g., a walker or an uncommon behavior), and then extrapolate lowered agency and competence for the entire individual from that narrow marker.16 For example, disability studies scholar Catherine Kudlick has a neurological symptom called nystagmus. Kudlick explains that this condition causes involuntary and erratic movements of the eye muscles, which impede her vision, but which also have allowed her to become “particularly attuned to how others perceive blind people.”17 Specifically, Kudlick notes how observers of her and other persons with visual impairment equate them “with being out of control and clueless,” and that this misconception is reflected in our everyday language and concepts, such as in phrases like “love is blind,” “blind rage,” “blind to the possibilities,” and to “blindly carry on.” Such misconceptions, Kudlick notes, “slip quietly into our souls” and infuse society such that “before long they’re floating inside and outside of doctor’s offices.”18 In summary, social constructions of persons with disabilities are systematically tilted towards representations of being “out of control” (low in agency) and “clueless” (low on competence), regardless of the actual ability of those individuals to act, plan, or do things. As a result of these misperceptions, one should expect what we call a “clinical paternalism bias” to creep into nearly every aspect of encounters between healthcare providers and patients with disabilities. To be fair, paternalism is not necessarily deleterious for either clinical or social policy reasons, such as when it helps preserve the health of a patient otherwise incapable of doing so herself.19 However, as in the present case of bias, paternalism will tend to bleed its influence beyond its salutary and functional measure. When the agency and competence of individuals with disabilities are underappreciated per se, symptoms and histories will not be patiently culled through dialogue, as they presumably are for other patients. Rather, symptoms and histories are more likely to be sought by the clinician from outside sources beyond the patient. This is because “collateral” sources – including family, friends, institutions, group homes, and others – may be viewed as more forthcoming of crucial clinical information than the patients themselves. Moreover, when symptoms are heard directly from persons with disabilities, they are vulnerable to being discounted as coming from a poor historian. There is thus an unfortunate dismissiveness regarding the very experiences of suffering and frustration with which disabled patients are all too familiar. Such indifference is also ironic because the patient’s experience is the foundation for presenting to clinicians to begin with, and the basis of determining if interventions are salutary. 16

17 18 19

See, for example, Catherine Kudlick, Opinion, The Price of “Disability Denial,” NY Times (May 24, 2017), www.nytimes.com/2017/05/24/opinion/disability-denial.html. See id. See id. See Erich H. Loewy, In Defense of Paternalism, 26 Theoretical Med. and Bioethics 445 (2005); see also generally Nudging Health: Health Law & Behavioral Economics (I. Glenn Cohen et al. eds., 2016).

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In diagnosis, when agency and competence are underperceived, the clinician will overattribute presenting symptoms to causes outside of the patient and underappreciate those that may be due to the patient themselves. For example, the clinician will be more likely to discount symptoms arising from poor self-care or selfdestructive intentions and behaviors. Proposed treatments will therefore be less ambitious and more conservative on the grounds that patients with disabilities are less able to comply with treatment guidelines. Similarly, proposed treatments will be less a cooperative and shared form of decision-making, and more of a paternalistic instruction to be followed without question. Preventative care interventions will be more oriented to the disabled person’s environment (especially social supports) and less on the ability of the patient with a disability to improve her own health as a partner in intervention planning (for instance, through self-motivated diet and exercise). Prognosis will similarly be more pessimistic than it needs to be. Hope – that crucial resource in healing relationships – will also be more drained. By stark contrast, the ecumenical goal for caregivers should be accuracy in the assessment of the mental state of their patients and meeting those patients – with and without disabilities – where they are in their life states. This standard is achieved by sensitively observing and attentively listening in order to accurately match the observer’s perception of the patient’s mental state to that patient’s actual mental state, regardless of where the patient lands on the spectrum of agency and competence. The same empathic desiderata apply to other mental state attributions, discussed below, that are systematically biased when perceiving persons with disabilities in healthcare settings. B. Fragile Friendliness Bias Compared with nondisabled persons, persons with disabilities are perceived as being higher on capacities for subjective experience and prosocial warmth.20 And, by having a high capacity for subjective experience, persons with disabilities are considered fragile, akin to how the elderly are perceived. Related to this bias is the overperception of persons with disabilities as being warm, friendly, and trustworthy. This perceived saintly quality – admittedly a relatively positive social stereotype, but one with important and negative clinical consequences – is present in many narratives of individuals with disabilities. To illustrate: a blogger with a disability self-identifying as “mbullis” notes that “we’re somehow above the worldly creatures of the Earth. We don’t drink, smoke, or swear. We would never steal . . . The problem with this halo effect . . . is that it really limits your potential to meet people, make friends, and get jobs.”21 Another person with a disability, a psychologist named Erin, recounts that she “was having lunch out with a colleague. He was wearing 20

21

See Envy Up, supra note 7; Ambivalent Stereotypes, supra note 7; Competence & Warmth, supra note 7; Drum, et al., supra note 6. See Dunn, supra note 7.

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a suit, and I was dressed in business casual. We were clearly discussing professional work. A woman felt compelled just by seeing my disability to approach and try to bless me and tell me what an inspiration I was. The more I tried to normalize myself and the situation, the more insistent she became in her praise . . . I have these experiences constantly.”22 For persons with disabilities therefore, a common theme expressed is that the greatest challenges they actually face are unconnected to the endogenous management of disability and its inherent manifestations. Rather, the most significant obstacles arise in the daily, concrete, and exogenous context of actualizing their right to “live in the world” like everyone else: having the agency to engage in ordinary social activities and to experience within those activities ordinary human responses.23 These include elevated, honorable, and kind responses as well as selfish, foolish, and angry responses. In other words, the right to partake in all the joyful, banal, messy, exuberant, and frustrating encounters of everyday life – just like everyone else. The overperception of disabled individuals’ capacity for subjective experience makes clinicians more sensitive to their suffering, producing a “clinical fragility bias.” Paradoxically, this is generally a good thing for clinical care but nonetheless has trade-offs. In the detection of symptoms, the degree of suffering will be amplified as compared to the same symptom expressed by counterparts without disabilities. Ambiguous symptoms that could be interpreted as aversive to patients with disabilities are more likely to be overinterpreted as such. Diagnoses would then be biased towards a more serious condition, when a less serious one may be the better explanation. This overly amplified assessment of suffering could lead to misdiagnosis, as well as excessive and unwarranted tests and treatments for a known diagnosis, all of which would subject individuals with disabilities to unnecessary risks from interventions, added mental stress, financial and time considerations, and increased pathology as having greater medical needs. With the fragility bias, clinicians will be less likely to suggest tests and treatments for persons with disabilities that require inflicting transient intense pain or other difficulties for long-term diagnostic knowledge or therapeutic benefit. Prognosis will be biased to underestimate the capacity of the disabled persons to endure and preserve themselves. When clinicians overperceive warmth and prosociality in persons with disabilities, clinical care will be premised on an underestimation of the ways in which the darker parts of human nature contribute to clinical outcomes, thus producing a “clinical saintliness bias.” In symptom detection and diagnostic formulations, clinicians would be less likely to look for nonsaintly, self-destructive, and antisocial mental states and behaviors underlying the clinical presentations by persons with disabilities, including anger management problems, suicidality, self-injury, 22 23

See also Drum et al., supra note 6, at 51. See Jacobus tenBroek, The Right to Live in the World: The Disabled in the Law of Torts, 54 Calif. L. Rev. 841 (1966).

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impulsivity, substance use disorders, crime, homicidality, sexually transmitted infections, personality disorders, domestic violence, marital infidelity, hopelessness, lack of courage, pettiness, and declines in self-care and activities of daily living. Clinicians would overestimate prognoses, with the halo of presumed friendliness spreading to prognostic optimism. In treatment planning, clinicians would be more likely to assume adherence to medications and other preventative interventions, and not check for their absence. Clinicians cannot deny persons with disabilities the possibility of having, and being supported through, the ordinary and pervasive human responses to everyday frustration, uncertainty, loss of control, paradox, disappointment, pain, and humiliation. When darker elements of human nature do emerge – as they often do for humans in general, including those with disabilities – clinicians must know how to respond carefully and sensitively with an estimation of how to improve the safety and health of their disabled patients. Yet for persons with disabilities, the barrier to effective care is that clinicians would be less understanding and tolerant of the existence of these darker elements of human nature since it would break the expected saintly script. C. Catastrophe Bias After new diagnoses or sudden injuries, many are hopeless and trajectories are heterogeneous. And yet, overwhelmingly, adaptation and growth after traumas are the rule rather than the exception.24 Many persons with disabilities even credit the deepest insights and meanings of the lives to their disability. Nevertheless, when perceiving individuals with disabilities, especially when outside of acute emergencies, observers often assume those individuals to be in a much worse situation than what the disabled persons themselves experience.25 Observers may presume suffering and something akin to “If I was in that situation, I would feel hopeless forever.” Studies of patient versus caregiver reactions to prognosis information for spinal cord injury,26 body part amputation in surgery and terminal cancer diagnosis,27 and burn trauma28 consistently show that caregivers perceive patients to have more emotionally negative reactions than they actually have. Studies likewise conclude that caregivers and other observers vastly underestimate the resiliency and hedonic adaptation of persons with disabilities.29 24

25 26

27

28

29

See generally Handbook of Posttraumatic Growth: Research & Practice (Laurence G. Calhoun & Richard G. Tedeschi eds., 2014). See Dunn, supra note 7. See Eugenia Bodenhamer et al., Staff and Patient Perceptions of the Psychosocial Concerns of Spinal Cord Injured Persons, 62 Am. J. Physical Med. 182 (1983). See Lois Mason & Ann Muhlenkamp, Patients’ Self-Reported Affective States Following Loss & Caregivers’ Expectations of Patients’ Affective States, 23 Rehabilitation Psychol. 72 (1976). See Rebecca J. Adcock et al., Staff Perceptions of Emotional Distress in Patients with Burn Trauma, 45 Rehabilitation Psychol. 179 (2000). See Samuel R. Bagenstos & Margo Schlanger, Hedonic Damages, Hedonic Adaptation, and Disability, 60 Vand. L. Rev. 745 (2007).

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As with the other biases we have enumerated and discussed, catastrophizing shifts the entire landscape of clinical decision-making. Catastrophizing produces “clinical pessimism bias” – a tendency for the clinician to assume not only that the situation of the person with a disability is worse than it actually is, but also that their clinical decision-making should match their lens biased towards perceiving catastrophe. In listening for and interpreting symptoms, the clinician magnifies the degree of suffering expressed by patients with disabilities, resulting in a more severe diagnosis for the same expressed symptoms. When persons with disabilities do not affirm the observer’s requirement for perpetual suffering, shame, and mourning, and thereby the need for patronizing help from observers, those observers (ironically) tend to devalue those persons with disabilities for failing to confirm their expectations.30 Consequently, prognoses will be shrunken. Preventative screenings for cancers and other conditions common among the elderly are less likely. The crucial ingredient in the clinician–patient relationship, hope, diminishes. As a result of less hope, self-fulfilling prophecies and the opposite of placebo effects – “nocebo” effects – unfurl in psychological as well as biochemical terms in the clinician and their patients with disabilities, as well as between them in their interactions. The clinician works less hard to solve clinical problems that arise, and the persons with disabilities engage in worse self-care and have less initiative to persevere. Further, more conservative treatments will be suggested and accepted as natural given the perceived all too tragic situation in which persons with disabilities find themselves. Heroic interventions are more likely to seem pointless. Utilitarian thinking and economic considerations will suddenly be more common in clinical conversations and considered a primary ethical value, previously underappreciated. In the extreme, the catastrophizing bias and the clinical pessimism bias it creates can go well beyond just a requirement of permanent mourning on the part of patients with disabilities. In extreme cases, it can also result in suicidal projections onto disabled persons: a person with disability can be thought to want to die if only because the clinician catastrophizes the impression of what it must be like to be in that individual’s situation. Some may even assume that persons with disabilities have lives not worth living, when in fact those individuals want nothing more than to live, and live well and fully.31 The three biases described above, and the various clinical biases in decisionmaking that they create, have both independent and interacting effects. The biases act to varying degrees on patients depending on the specific disability in question, and a goal of future research should be to clarify the bias burden and distribution of different disabilities. For instance, a disability producing quadriplegia may produce more clinical paternalism bias than a person with multiple sclerosis or mild 30

31

See Katie Wang et al., Independent or Ungrateful? Consequences of Confronting Patronizing Help for People with Disabilities, 18 Group Processes & Intergroup Rel. 489 (2015). See, for example, Ben Mattlin, Opinion, A Disabled Life Is a Life Worth Living, NY Times (October 5, 2016), www.nytimes.com/2016/10/05/opinion/a-disabled-life-is-a-life-worth-living.html.

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dementia even though the capacities for agency in each patient may vary dramatically. The biases described also can work in interactive manners to multiply negative effects for clinical decision-making, such as when the catastrophe bias as well as the ineffectual bias both worsen the bias towards clinical paternalism. Alternatively, one bias can inhibit a clinical effect, whereas another bias can promote the same clinical effect. For example, as discussed above, the halo of presumed friendliness on the part of the patient leads to overestimating prognosis. But depending on which bias is more salient, overestimating prognosis could be inhibited by the clinician’s ineffectual bias, which on its own would tend to pessimistically underestimate the patient’s prognosis. We should therefore consider each bias based on the specific disability and its phenomenology for patients and clinicians, as well as how each bias interacts with the others to alter clinical outcomes. III. EDUCATIONAL AND CLINICAL INTERVENTIONS

Preventing and inhibiting the three specific biases and their clinical effects described above must begin in the first stages of clinical education when students learn about the clinician–patient relationship and extend into interventions for practicing clinicians in inpatient and outpatient clinical settings. The clinicians that are subject to the forms of ableism we describe are not only physicians and nurses, but also dentists, podiatrists, physician assistants, nurse practitioners, paramedics, physical therapists, medical technologists, occupational therapists, dietitians, radiographers, respiratory therapists, speech language pathologists, medical technicians in general, and other allied health professionals – all of whom work intimately with patients with disabilities to diagnose, treat, and prevent illness and improve and maintain recovery and autonomy in activities of daily life. Educational interventions during schooling and clinical training should begin with consciousness raising and making known the social psychological biases against persons with disabilities, and how each of them impacts diagnosis, treatment, and prognosis, so as to more easily attend to and inhibit these biases in clinical decisionmaking. Educational interventions should not prevent or make taboo the perceiving in patients of things such as actual low agency, ineffectualness, fragility, friendliness, states of catastrophe, or ever acting paternalistically or with pessimism. Rather, what should be prevented is bias and stereotyped perceptions, not necessarily the perception of any particular state of vulnerability. The goal of interventions against clinical biases is to improve the accuracy of perceptions of the patient’s mental and physical state; to meet patients where they really are in their illness and healing journey and life course, whether in the heights of agency or the depths of fragility. Whatever the bias in question, the clinician in training can overcome its distortions by sensitively observing and attentively listening in order to accurately match the observer’s perception of the patient’s mental state to that patient’s actual mental state, regardless of where the patient lands on the spectrum of agency, competence, fragility, or Downloaded from https://www.cambridge.org/core. University of Glasgow Library, on 21 Jul 2020 at 02:25:58, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108622851.014

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friendliness. Further research will need to establish whether interventions need to be tailored to each specific bias, or whether all three biases can be improved by domain general interventions that humanize patients with disabilities as persons with dignity. In addition, when learning from case studies of disease states, educational materials should include patients with disabilities, not just abstractions of hypothetical nondisabled persons, since this is the nature of the actually lived clinical life that students will confront. Clinical interventions would improve the everyday practice of medicine by preventing biases against the disabled from impacting clinical care. The standard clinical formulation (chief complaint, history of present illness, social history, etc.) should also include a section where the clinician can document biases that may arise for the specific patient with a disability (and more broadly). Presenting this section in dialogue with clinical colleagues should be part of the presentation of the patient on rounds and should be seen as just as important for accurate and ethical decision-making as the other parts of the patient’s narrative and clinical data. Admittedly, curricular education around disability-specific issues may be somewhat challenging to implement given that training programs are tightly scheduled, and educators compete for time in which to teach students a variety of critical issues. Nevertheless, most training programs do not teach clinicians specifically to care for persons with disabilities, thereby leaving healthcare providers inadequately prepared to attend to that population and guided by their own biases. Moreover disability-specific clinical education can expediently be integrated into routinely required existing curricula on care for other underserved groups. Finally, we note three added interventions: accepting qualified persons with disabilities as clinical students; empowering those students as peer educators; and integrating disabled persons as faculty and community-based teachers.32 IV. CONCLUSION

Realizing the legal, ethical, and inclusive spirit underlying American disability law and bioethics policies in the clinic requires our healthcare clinicians to continue to focus on inequalities in access to healthcare. At the same time, they also must begin to consider the impact of the psychological subtleties of the clinician–patient relationship itself and how unequal care originates from unequal perceptions of others, including those with disabilities, as persons. For, much like non-disabilityspecific biases in our society, the ableism described is pervasive. Fortunately, however, the effects of such prejudices on clinical decision-making can be thwarted through optimal educational and clinical interventions. This chapter provides an 32

See Michael Ashley Stein et al., Equal Access to Health Care Under the U.N. Disability Rights Convention, in Medicine and Social Justice: Essays on the Distribution and Care 245 (Rosamond Rhodes et al. eds., 2nd ed. 2012).

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initial conceptual framework, along with novel concepts and nomenclature, and recommendations for combatting ableism in healthcare settings. Our hope is that these suggestions will be rigorously tested in further clinical and educational research and then implemented to close the massive gap in health disparities for persons with disabilities.

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10 Chronic Pain As a Challenge for Disability Theory and Policy Caroline J. Huang and David Wasserman1

This chapter argues that chronic pain (CP) represents an important and neglected type of disability. CP has important similarities to more familiar physical disabilities, but it cannot be regarded as a “mere difference,” and it fits uncomfortably under standard social models. The case of CP illustrates the need for flexibility in the definition of and social response to disability. We organize this argument into four parts. Section I “locates” CP in relation to kindred conditions on the basis of two characteristics: duration and medical explanation. CP is an enduring condition, and it shares two of the most salient features of more familiar disabilities: substantial functional limitations and stigmatizing social responses. The extent to which CP is medically explained varies widely. In some cases, it arises in clearly understood ways from well-characterized conditions; in others, the duration or persistence of the pain eludes current medical explanation. Although the patient has privileged access to her pain in both cases, that privilege is often disregarded in the latter, since clinicians tend to be skeptical of pain reports that are not “validated” by outward signs.2 Section II examines the challenges of this subjectivity for assessing, treating, and accommodating medically unexplained CP. Section III argues that unlike some disabilities, CP can be overridingly as well as intrinsically bad: bad not only in itself, but in making life go worse for almost all who suffer it. Section IV concludes the paper by building on Section III to argue for a right to pain relief. In light of the considerations raised in Section II, however, the scope and strength of that right are difficult to determine, and its exercise imposes significant responsibilities on the rights-holder.

1

2

This research was supported by the Intramural Research Program of the National Institutes of Health (NIH) Clinical Center. The views expressed herein are solely those of the authors, and do not represent the position or policy of the NIH or the US government. Drew Carter et al., Why Is Pain Still Under-Treated in the Emergency Department? Two New Hypotheses, 30 Bioethics 195 (2016).

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In Table 10.1, we represent as four discrete categories what may be better seen as two continua: between acute and chronic pain, and between medically explained and unexplained pain. These factors are not orthogonal because it is likely that a higher proportion of CP than acute pain is medically unexplained. The first continuum includes the arbitrary point at which pain is classified as chronic rather than acute, that is, three or more months or longer than expected healing time;3 this duration separates Cells 1 and 2 from Cells 3 and 4. There is no official dividing line horizontally separating Cells 1 and 3 from Cells 2 and 4; a somatic source for the pain may be obvious or elusive, if it is apparent at all. Acute pains are a fact of all lives. Most have an obvious source; some have sources that require a skilled clinician to identify; some come and go without medical explanation. The longer the pain lasts, the more it is likely to be regarded as a disability, as one aspect of a disability, or as a comorbidity. The less it is medically explained, the less likely it is to be regarded as a straightforwardly physical disability. Thus, our focus in this paper will be on Cell 4: chronic pain that lacks a full or adequate medical explanation. Unless otherwise indicated, we will use “CP” and “chronic pain” to refer only to conditions that fall into Cell 4. Acute vs. Chronic: Gliedman and Roth observed how differently a man was perceived when his limp was attributed to a congenital disability rather than a skiing accident: “Unlike temporary injuries, a handicap is considered by others to be integral – ‘essential’ to the handicapped person’s social being.”4 This is not to claim that acute dysfunctions cannot be stigmatized, but brief episodes of pain, however intense, are something to which all flesh is heir. They may provoke avoidance or induce discomfort in witnesses, but those behaviors themselves likely reflect the unsettling recognition that “there but for the grace of God go I.” As table 10.1 Categories of pain Acute, medically explained 1 Acute, medically unexplained 2

3

4

Chronic, medically explained 3 Chronic, medically unexplained 4

See Rolf-Detlef Treede et al., A Classification of Chronic Pain for ICD-11, 156 Pain 1003, 1003–04 (2015); Chronic Pain: Symptoms, Diagnosis, & Treatment, MedlinePlus (2011), medlineplus.gov/maga zine/issues/spring11/articles/spring11pg5-6.html; IASP Task Force for the Classification of Chronic Pain in ICD-11 Prepares New Criteria on Postsurgical and Posttraumatic Pain, Int’l Ass’n for Study Pain (February 9, 2016), www.iasp-pain.org/PublicationsNews/NewsDetail.aspx?ItemNumber=5134. John Gliedman & William Roth, The Unexpected Minority: Handicapped Children in America 19–20 (1980).

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disability scholars have observed, the compassion for people with permanent or chronic abnormalities is of a different order, for example, far less empathetic.5 The person with a disability – the person with a metal brace rather than wooden crutches, or the person in chronic rather than acute pain – is “other,” and not someone that most nondisabled people fear becoming like, even if they may fear the “courtesy stigma” of becoming too familiar. Medically Explained vs. Unexplained: We will characterize unexplained CP as pain whose duration and magnitude are underdetermined by damage to the body, brain, or spinal cord. Although the CP experienced by people with spina bifida or rheumatoid arthritis is an equally subjective symptom, it is associated with observable medical signs in a way unexplained CP is not. This difference matters for two reasons. The first concerns credibility and first-person epistemic authority. Wellcharacterized chronic conditions like arthritis are widely known to cause pain in specific bodily regions; individuals diagnosed with these conditions do not face the same difficulty in convincing their providers and peers that pain felt in these regions is as “real” as those with unexplained etiologies. Individuals in Cell 4, lacking damage or disturbance in the regions of the body where they feel pain, often face unwarranted doubts about the reality of their pain; their complaints are all too often dismissed as “psychosomatic,” exaggerated, or fraudulent.6 In Chapter 3 of this volume, Daniel Goldberg observes that “the tens of millions of people who experience [CP] have historically and enduringly experienced doubt and silencing.” A second difference is one of affinity or identity. Individuals whose pain can be attributed to a well-characterized chronic condition may come to see that condition as a significant part of their biographical or social identity, and it is likely to be seen that way by others. Even if their pain is qualitatively similar to that of individuals whose pain has no known source, they will more likely associate or identify with others with the same chronic condition rather than the same quality of pain. This clear identity marker may also facilitate an individual’s membership in an organized support group. As a participant in a study investigating how primary care providers manage medically unexplained symptoms pointed out: “We can treat chest pain . . .. You can even join a support group, survivor of you know, myocardial infarct. There is no ‘survivor of heart pain.’”7 While support groups such as the American Chronic Pain Association are open to anyone with ongoing pain, there are tradeoffs between 5

6

7

See Anita Silvers, Formal Justice, in Disability, Difference, Discrimination: Perspectives on Justice in Bioethics and Public Policy 13, 94 (Anita Silvers et al. eds., 1998). See, for example, Daniel Z. Buchman et al., Investigating Trust, Expertise, and Epistemic Injustice in Chronic Pain, 14 J. Bioethical Inquiry 31 (2017); Daniel Z. Buchman et al., You Present Like a Drug Addict: Patient and Clinician Perspectives on Trust and Trustworthiness in Chronic Pain Management, 17 Pain Med. 1394 (2016); Daniel Z. Buchman et al., The Epidemic as Stigma: The Bioethics of Opioids, 45 J.L. Med. & Ethics 607 (2017). Louise Stone, Making Sense of Medically Unexplained Symptoms in General Practice: A Grounded Theory Study, 10 Mental Health Fam. Med. 101, 106 (2013) (omission in original) (quoting a study participant).

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specificity and inclusiveness, for example, the inability to recommend clinical trials to people with different kinds of CP when participation criteria are narrow. As the comparison between acute and chronic pain suggests, it is the duration of CP that accounts for two of the characteristic features of a disability: substantial functional limitations and adverse social responses. As suggested by the comparison of medically explained and unexplained pain, the uncertain or attenuated somatic source of CP accounts for the extent to which it possesses a different, distinctive feature: privacy and invisibility. In the next section, we will focus on the complications that arise from this feature. Because the experience of pain is paradigmatically subjective, and the experience of CP lacks reliable “objective” correlates, it is especially difficult to assess the magnitude of CP and the functional limitations it creates. II. THE SUBJECTIVITY OF PAIN: DISTINCTIONS AND COMPLICATIONS IN ASSESSING PAIN IN ALL FOUR CELLS

Pain is a paradigmatically subjective experience that may vary greatly across individuals, even in response to the same physical stimulus. But the lack of a known somatic source exacerbates the problem: Determining whether a patient is unusually sensitive in response to a specific, painful stimulus is challenging. Yet [it is] much more challenging to determine abnormal sensitivity in relation to non-evoked pain – that is, ongoing or chronic pain, which may exist independently of any particular stimulation.8

Complicating judgments about pain magnitude further, we can recognize in our own experience of pain a distinction between how much pain we experience and how well we tolerate it. Pain experience depends on various physiological, psychological, social, and cultural factors. Pain tolerance is also a complex phenomenon that depends on personal and social expectations and skills. Some people are good at making pain less salient by distracting, relaxing, or reassuring themselves; some people, arguably, have more grit or gumption than others. But the former may significantly influence the latter: soldiers learn techniques for bearing up under pain, patients are taught “resilience,” and some people are autodidacts.9 Further, even if a person can distinguish the intensity of her pain from her skill and strength 8

9

Amanda Pustilnik et al., Panel 2: “Excess” Pain, Hyperalgesia, and the Variability of Subjective Experience, 18 J. Health Care L. & Pol’y 237, 243–44 (2015) (footnotes omitted). A further distinction, and complication, is between the sensation of pain and the experience of unpleasantness. Pain asymbolia is characterized as a disassociation between the two. It can hardly be regarded as an extreme form of pain tolerance, since the disassociation is involuntary, unattributable to distraction, etc. It may rather reflect an experienced separation of two conceptually distinguishable aspects of pain – as perception of bodily injury or damage and as negative affect. But perhaps temporary, partial disassociations do reflect tolerance, for example, when pain is welcome as a sign of healing, or as the first sensation in a previously numb limb. In such cases, however, the subject may be able to recognize both negative affect (unpleasantness) and positive affect (relief).

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in tolerating it, and separate her skill from her strength, these distinctions are difficult for others to make. As we will see later, these difficulties make the clinical assessment of CP especially susceptible to racial, ethnic, and gender biases. Identifying neurologic “signatures,” a seemingly objective method of confirming and measuring CP, could help increase medical acceptance of such pain as a biomedical reality and validate the reports of those claiming to experience it. And yet this vindication may have unwelcome consequences for people with CP. Relying on brain activity patterns as the diagnostic gold standard will bolster the credibility of some patients whose pain reports would otherwise be met with doubt, but it may not enhance, and may even reduce, the epistemic authority of CP patients in general – especially if brain scans are used as a lie detector of sorts to second-guess self-reports. Because the subjective experience of pain – its “hurt” – is the source of its badness and our primary concern in seeking to alleviate it, neuroscientific indices are unlikely to replace, rather than merely supplement, sincere self-reports.10 The subjectivity and variability of CP raise significant challenges for reasonable accommodation. As commentators have noted, reasonable accommodation is a vague legal requirement, in need of regulatory or judicial clarification.11 But to some extent, vagueness is inevitable, given the heterogeneity of disabilities and of the people who live and work with them. Obviously, people with the same physical diagnosis will vary considerably in the extent to which their conditions impact their work; but these differences themselves can be traced, or are assumed to be traceable, to objective physiological conditions, and to some extent validated by health professionals. Less validation is available in the case of medically unexplained CP, making it more difficult to persuade actors that reasonable accommodations are needed. If medicine incompletely explains the persistence of pain, it can hardly explain the variation in intensity, quality, and functional impact across individuals with CP. Unlike most employees who call in sick, an employee with CP who is overwhelmed by an unexpected flare-up can hardly be expected to return with a doctor’s note attesting to her private experience. Indeed, the doctor may greet her complaint with the same skepticism as her employer, for the same reason: there is no objective evidence, except in her behavior and testimony, that she has experienced an intense upsurge in pain. Not only must her employer trust her, she must trust her own judgment that her pain is bad enough to warrant staying home. Further, the employee must somehow compare present pain with potential future pain: What if this is the beginning of a longer flare-up, and tomorrow’s pain will be worse? Will she regret seeking accommodation now rather than later? Given the variation in pain tolerance experienced by the same individual, these may not be easy judgments. 10 11

We thank Govind Persad for raising the issue of warranted epistemic authority. See Michael Ashley Stein, The Law and Economics of Disability Accommodations, 53 Duke L.J. 79 (2003); Christopher J. Willis, Comment, Title I of the Americans with Disabilities Act: Disabling the Disabled, 25 Cumb. L. Rev. 715 (1994).

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Caroline J. Huang and David Wasserman III. CP AS A “BAD DIFFERENCE”

Whether CP is a “bad difference” depends, not surprisingly, on how we understand the terms “pain” and “badness.” Judgments about the badness of pain may depend on the account of pain one adopts. For example, pain asymbolics feel pain without negative affect, that is, they report experiencing pain without either unpleasantness or the impulse to avoid it. Their condition is instrumentally bad because it greatly increases the risk of injury. But it arguably lacks the intrinsic badness claimed for the normal experience of pain: its unanalyzable “hurt.” Could the latter be regarded as a mere “comorbidity” of the perceptual essence of pain? Pain makes every standard list of noncomparative harms: states or occurrences that are bad regardless of their net effect on well-being. Even in comparative terms, it is noteworthy that in many, if not all, cases where CP makes life go better, it does so in virtue of being bad, for example, by strengthening empathy with those who suffer. Moreover, most of the claimed benefits can be conferred by living with acute pain; in confronting brief episodes of intense pain, one can display fortitude or gain appreciation for the relief felt when pain subsides. And while one may arguably have an opportunity to display such virtues more fully in confronting enduring pain, CP also presents unwelcome opportunities to display negative qualities, like weakness and irresolution. Other proposed benefits are more likely to be lost than gained through CP, which can risk empathy fatigue; strain relationships by imposing asymmetrical burdens; weaken or exhaust defenses against future pain; and, if it inhibits other painful and unpleasant experiences, does so only by monopolizing the subject’s attention and resources. This last feature of CP is among its most detrimental. By exhausting the sufferer, depleting her resources for meeting its challenges, and monopolizing her attention, CP may make it extremely difficult to achieve the kind of creative adaptation described in so many disability narratives, adaptation that requires energy, resourcefulness, and perseverance. Moreover, the constant or near-constant presence of pain and the resultant depletion of social resources threaten effective functioning even more severely than do the burdens of other chronic illnesses not associated with pain. As lupus patient Christine Miserandino memorably illustrated with a handful of spoons, she has a finite (and variable) amount of energy that is often drained simply by completing activities of daily living.12 In earlier writing, Barnes suggests that CP may not be “bad simpliciter” or a “bad difference.”13 She quotes Nadina LaSpina, for whom the pain of post-polio syndrome is part of her deeply valued identity as a person with a disability: “Certainly, the pain is not wonderful, yet the identity is who I am. And I’m proud of it.”14 A single claim of this sort 12

13

14

Christine Miserandino, The Spoon Theory, But You Dont Look Sick?, butyoudontlooksick.com /articles/written-by-christine/the-spoon-theory/ (last visited March 27, 2018). Elizabeth Barnes. The Minority Body: A Theory of Disability 115 (2016). We should note that this is merely a suggestion, and that Barnes’ account of disability as value-neutral is consistent with specific disabilities being “bad simpliciter.” Id.

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would be a very thin reed on which to rest a denial of intrinsic and overriding badness. Further, as Govind Persad argues in Chapter 19, “Even if a painful disability can be good or neutral on balance, it is the disability, not the pain, that makes it so.” Indeed, LaSpina elsewhere clarifies her position: “We’re not masochists. We would gladly get rid of the pain. We just don’t want to be ‘nondisabled.’”15 Another of Barnes’ examples serves as a contrast to CP.16 She notes that some athletes regard their muscle pain as an inextricable part of their training and performance, and thus deeply value it. Unlike LaSpina, they would not seek to relieve their pain. But their pain differs in a critical respect from CP and even most acute pain: it is voluntarily incurred and experienced as an integral part of a cherished activity. Seana Shiffrin, who introduced the notion of noncomparative harm, maintains that the essential harmfulness of pain lies in the utter passivity of experiencing it: It forcibly intrudes and occupies an aspect of one’s consciousness, is insistently present, and imposes an experience that is alien and directly at odds with one’s will . . .. Being trapped within a close, present experience to which one is passive and resistant instead of being actively engaged and identified with, or at least comfortably indifferent to, seems central to its objectionableness, and I would hazard, to its harmfulness. Unchosen pain is altogether intrusive and forced.17

Shiffrin contrasts chosen pain, which lacks the same “cleavage between the will and the experience . . . because the pain nests within some larger purpose or endeavor.”18 That characterization is an apt one for the athlete’s aching muscles – the pain nests within the larger purpose of excelling in a competitive endeavor. There is a practical upshot to the case we have made for the badness of CP. Although it is important to recognize the ways in which the social responses to CP – from skepticism and distrust to pity and oversolicitude – are disabling, the pain itself imposes severe hardships and underwrites urgent claims for alleviation. Individuals with CP may well value the characteristics they have developed because of their pain, but none of these valued outcomes give people with CP a good reason to hold on to their pain. Indeed, we suspect that few people with CP would hesitate to accept a credible cure, if ever one became available. To conclude the case for CP as a bad difference, we turn to a clinical ethicist with that condition: Chronic pain challenges the mind through its permanence and implacability. It is particularly difficult to comprehend how so intense a sensation can continue undiminished, but for CP patients, it does . . . It is easy to see how, and why, 15

16 17 18

Mary Johnson, Pride and Identity: Part 2 of an Interview with Nadina LaSpina and Daniel Robert, A Ragged Edge Online (March 1998), www.raggededgemagazine.com/mar98/pride.htm. Barnes at 116–17. Seana Valentine Shiffrin, Harm and Its Moral Significance, 18 Legal Theory 357, 383 (2012). Id.

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communicating that experience [of thinking pain could not get worse, only to find it could] to another through words falls flat. And I am referring only to the experiencing itself, not its sequelae; the flotsam and jetsam of one’s life left in its wake is another matter altogether.19

IV. THE RIGHT TO PAIN RELIEF

The formidable disadvantages faced by people with CP clearly have both social and medical causes. But by far the gravest harm caused by societal attitudes and practices is the reluctance to recognize and treat their underlying impairment: pain. In contrast to people with many physical disabilities, for whom medical responses are often excessive and overbearing, people with CP are pervasively undertreated. Although palliative care is a medical response to CP, the denial of care may reflect the same assumptions and prejudices as exclusionary social practices. It is hardly a stretch to regard the stigma-driven denial of pain relief as a particularly harmful form of disability discrimination. We would go further and argue for the recognition of a right to pain relief. The idea of such a right is not new; notably, the International Association for the Study of Pain and World Health Organization declared access to pain relief a universal right in 2004.20 It is not difficult to ground such a right in the compelling interest each of us has in avoiding pain. (A right to be free of pain, in contrast, would be overly demanding, and not only for people with CP.) As noted in a recent paper, the content of human rights has been determined in part by two ideas: “that human rights in general secure certain ‘minimum conditions of a decent life’” and that such rights “protect us against certain ‘standard threats’ to our basic interests.”21 It borders on self-evident that pain is a standard threat to our basic interests, and that the alleviation of intense, enduring pain is a minimum condition of a decent life. But while we think everyone has a right to pain relief, we also recognize there are important clinical, ethical, and social constraints to consider in deciding how to implement this right. Before considering these constraints, however, we need to address a strain in professional attitudes and public policy that tacitly rejects such a right: the stubborn conviction that relief is a privilege for the deserving, for example, those who have done nothing blameworthy to contribute to their pain. This conviction is reflected in the outsized importance ascribed to the person’s own conduct: the extent to which the person’s behavior has contributed and/or will continue to contribute to her CP. There is precedent in taking account of patient behavior when determining relief for disabling health conditions. For example, people who are morbidly obese without 19

20 21

Stowe Teti, Opioid Treatment Agreements: An Insider’s Perspective 7 (last updated March 7, 2018) (unpublished manuscript) (on file with authors). See Michael J. Cousins et al., Pain Relief: A Universal Human Right, 112 Pain 1 (2004). John Tasioulas & Effy Vayena, Just Global Health: Integrating Human Rights and Common Goods 14 (December 24, 2015), www.papers.ssrn.com/sol3/papers.cfm?abstract_id=2608938.

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a clear physiological cause may not meet the legal requirements for a disability.22 Yet in contrast, people with small cell lung cancer, which is often caused by smoking, are automatically eligible for Social Security Administration-provided disability assistance under the “Compassionate Allowances” policy.23 These contrasting cases demonstrate that policy and legal responses vary in unprincipled ways. These kinds of policies tap into the idea of the “deservingness of the disabled,” which, Jane Pryma argues, is derived from the idea of the “deservingness of welfare recipients.”24 In a study of twenty-four female fibromyalgia patients, Pryma found considerations of deservingness played a disturbingly large role in medical and social accommodation decisions. Interviewees described being forced to prove the impact of their CP. Women of color faced an especially daunting intersectional stigma that required them to carefully navigate their identities as women, people of color, and people in pain. For example, one Black participant recalled a renowned fibromyalgia specialist saying, “Your pain is not as bad as [a White woman’s pain], and everybody knows that Blacks and Hispanics have addictive personalities.”25 When even experts perpetuate false and harmful stereotypes, it is no wonder that CP patients feel they have to convince their communities that they deserve relief. Yet even if we reject the idea that pain relief is a privilege for the deserving, we must recognize important limits on a right to pain relief – although not necessarily those suggested by wary healthcare professionals or policymakers. Some of the leading biomedical responses to CP may be risky, for example, potentially addictive. Thus, we need to be sure that such responses are appropriate for the CP patients receiving them; that the CP patients are willing and able to follow through with the proposed treatment(s); and, of course, that the expected benefits of treatment(s) outweigh the risks. In the remainder of this part, we offer some guidelines and caveats in assessing whether these conditions are satisfied. The reality of CP, and the need for pain relief, should not be determined on the basis of a physiological cause alone. As discussed in Section II, pain is (currently) a selfreported symptom rather than an objectively quantifiable sign, which means that pain patients face questions about their personal credibility when seeking relief. In 22

23

24

25

Although the Equal Employment Opportunity Commission and some Federal District Courts have interpreted the Americans with Disabilities Act Amendments of 2008 as eliminating the requirement of an underlying physiological disorder, see, for example, Lowe v. American Eurocopter, No. 1:10CV24–A–D, 2010 WL 5232523, at *7 (N.D. Miss. 2010), the issue remains unresolved, and at this writing is before a Circuit Court for the first time. See Richardson v. Chi. Transit Auth., Nos. 17–13508 and 18–2199 (7th Cir. appeal docketed May 30, 2018). POMS: DI 23022.320 – Small Cell Lung Cancer, Soc. Security Admin. (September 30, 2008), secure .ssa.gov/poms.nsf/lnx/0423022320; Social Security Disability with Small Cell Lung Cancer, Disability Benefits Ctr., www.disabilitybenefitscenter.org/compassionate-allowances/small-cell-lung-cancersocial-security-disability (last visited February 27, 2018). Jane Pryma, “Even My Sister Says I’m Acting like a Crazy to Get a Check:” Race, Gender, and Moral Boundary-Work in Women’s Claims of Disabling Chronic Pain, 181 Soc. Sci. & Med. 66, 66 (2017). Id. at 70.

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the absence of other evidence, then, a clear physiological source of CP may be seen as a proxy sign that their pain is legitimate. For patients with clear physiological sources of their pain, this is both a blessing and a curse: it is obviously easier to have their need for pain relief recognized as “real.” But if their physiological source is treated successfully and their pain lingers, does this mean that pain is no longer legitimate? For patients without clear physiological sources, the worry is that their pain will be considered less legitimate, if not dismissed outright. This perceived requirement undermines the self-reported testimony of CP patients and results in the epistemic injustice mentioned in Section I, which in turn impacts the ability of patients to pursue proper care. The influence of patient behavior on CP can be difficult, if not impossible, to discern, and therefore is not a reasonable criterion on which to hinge assistance. For instance, is a person whose pain is caused by a genetic disorder more deserving of accommodation than a person whose pain is caused by playing football? In the first case, the person was born with a disorder, though its severity may have been affected by environmental factors including diet and exercise. In the second case, the person risked long-term musculoskeletal, neurological, and psychological damage in pursuit of potential benefits such as pleasure, physical fitness, camaraderie, and, in rare cases, financial security. It may not have even been the athlete’s idea to play football, but rather a decision made by his parents. Should the player be held responsible for future harms when it was not initially his decision to risk them? This kind of question may be relevant in apportioning damages in civil trials, but it has no clear moral or practical rationale in determining eligibility for pain relief. Moreover, it would be incredibly resource-intensive to try to assess such counterfactuals for each person. Seeking to penalize people for past behavior with a foreseeable likelihood of hindering their care is both less ethical and less economical than incentivizing future behavior. Ultimately, the way in which a person acquires a disability should not affect the medical assistance and societal accommodation available to her. Our point is not that patients are never responsible for some aspects of their medical conditions; it is that behavioral contributions are far too difficult to isolate and assess for treatment purposes, and those assessments are likely to be distorted by bias and stereotyping. Clinicians and patients both bear responsibilities in charting a reasonable course for pain management. Clinicians should recognize that personal biases and societal issues should not solely dictate what therapies they offer. It is also critical for patients to recognize that while they cannot be expected to accept unmitigated pain, it is often unrealistic to wholly avoid or relieve all pain.26 How might this play out in practice? The use of opioid medication is one good test case; clinicians should be open to prescribing opioids when appropriate, and patients should appreciate that 26

See Jane C. Ballantyne & Mark D. Sullivan, Intensity of Chronic Pain – The Wrong Metric?, 373 New. Eng. J. Med. 2098 (2015).

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appropriate prescribing does not mean pursuing pain relief to the exclusion of function. Furthermore, the level of pain warranting relief should not be set in terms of the highest-functioning CP patients, who are able to manage their own care and participate through pain. Nor should we assume that the highest-functioning patients experience less pain or need less pain relief. That would conflict with how we view disability in general; in education, for instance, students with autism are not denied services simply because they are on the high-functioning end of a spectrum. These principles support adaptations to existing legal and policy accommodations. Current law and policy are overly focused on disability that precludes participation entirely, to the serious neglect of disability that limits or inhibits participation. For example, Social Security Disability Insurance availability is predicated on the inability to complete activities of daily living rather than on an assessment of the severity of the condition absent treatment or mitigation. Forcing a person to wait until disabling CP is so bad that it precludes all participation makes little sense. Moreover, denying medical and social assistance will only increase the severity and/or duration of their need for pain relief and likely require more resources in the long run. Although Medicaid for the “medically needy” is available in certain states for people whose incomes are too high to qualify for traditional Medicaid, it requires “spending down” excess income on medical bills and thus prevents CP patients from building savings and assets.27 This is particularly problematic because the ability to maintain control over one’s life is a key aspect of pain management. Additionally, some of the most effective forms of pain management involve costly career and lifestyle changes, as well as medical treatments. This means that many people pay a financial penalty for trying to manage their pain in accordance with clinicians’ recommendations, often running out of funds to maintain effective treatments. We should incentivize, not punish, the social participation of people with CP by taking account of the premanagement functional impact of CP in deciding the thresholds for receiving government assistance, as well as the amount of assistance offered. Given that CP costs society up to $635 billion annually in lost productivity and medical costs,28 this is a modest proposal. V. CONCLUSIONS

As we have argued, the case of CP makes it clear that disability theory, practice, and policy cannot be one size fits all. The badness of CP requires that we recognize a right to pain relief aimed at restoring function and adopt clinical, legal, and policy responses that facilitate this goal. 27

28

Ctrs. for Medicare & Medicaid Servs., Eligibility, Medicaid.gov, www.medicaid.gov/medicaid/elig ibility/ (last visited March 31, 2018). Darrell J. Gaskin & Patrick Richard, The Economic Costs of Pain in the United States, in Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research 301, 303 (Comm. on Advancing Pain Research, Care, & Educ., Inst. of Med. of the Nat’l Acads. ed., 2011).

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Introduction to Part IV Michael Ashley Stein

The troika of chapters in this Part demonstrates, in dissimilar contexts and in varied ways, the deleterious effects of clumsily applying, misconstruing, or violating disability-based civil rights laws. Underlying and uniting the three chapters is the impact of misunderstanding disability as an identity category and a subject of normative social justice. Stated more in line with the book’s theme and its Introduction, these contributions highlight some of the real-world manifestations of viewing disability as deficit rather than as difference. Leslie Francis and Anita Silvers in “Making ‘Meaningful Access’ Meaningful: Equitable Healthcare for Divisive Times” draw a distinction between disabilityrelated accommodations and modifications, both crucial to achieving meaningful access to healthcare but in different ways and towards different ends. Accommodations, they note, are personalized emendations or aids that can successfully enable particular persons with disabilities to function. By contrast, modifications alter policies, practices, or environments in order to eliminate barriers for groups of people to access opportunities. When accommodations are misapprehended as modifications, they are often invoked as raising an undue hardship or a fundamental alteration – both defenses to the Americans with Disabilities Act (ADA) and the Rehabilitation Act. Conversely, misjudging a general modification for an individualized accommodation casts the adjustment as being beyond the scope of either statute because it raises the complainant to an equilibrium above that of equality. Francis and Silvers make their arguments in the context of the provision of healthcare, grounding the source of erroneous interpretations of accommodation and modification to two seminal Supreme Court Rehabilitation Act opinions, Southwestern Community College v. Davis1 and Alexander v. Choate.2 They then highlight similar judicial misinterpretations in the application of the ADA to the healthcare contexts of auxiliary aids and Medicaid provision, although their 1 2

442 U.S. 397 (1979). 469 U.S. 287 (1985).

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assertions apply equally well to areas of disability rights beyond healthcare, notably employment, and map out neatly onto the disability as variation versus deficit debate. Through their lens, for example, a court might consider it appropriate for an employer to accommodate a visually impaired employee needing access to an internal website by purchasing a screen reader (disability as variation and thus within social inclusion boundaries), but would view retrofitting that internal website as a modification beyond the ADA’s mandate (disability as deficit, with the consequent emendation amounting to more than just equal access and therefore invalid). In “The Privacy Problem in Disability Antidiscrimination Law,” Jasmine E. Harris looks to the harmful outcomes of considering disability status as information about a deficit and the connection between privacy and marginalization. Privacy statutes, such as the Health Insurance Portability and Accountability Act and the Genetic Information Nondiscrimination Act, shield an individual’s disability status as a form of medical information in order to protect people from discrimination. Yet in doing so, those privacy statutes further instantiate a medical model of disability, and also prevent the social reconstruction that is impelled when disability status is revealed and thereby normalized. While cautioning for deference to the highly personal decision of how to define or disclose one’s disability status, for reasons of both autonomy and agency, she encourages consideration of a publicity approach both to individuals and the disability category generally as a means of advancing stigma reduction and social acceptance. Harris, in her chapter, is arguing for disability disclosure to follow the model of disability as a “mere difference” rather than a deficit. Here, disability is simply one of several characteristics that people can possess among multiple characteristics and that contributes to their total identities. Drawing parallels to the LGBT advocacy community, which certainly does not view the sexual orientation of its members as a deficit, she notes the salutary impact that being open with one’s identity has had on reconfiguring public perceptions of previously marginalized identity statuses. Last, in “Sexual Agency as a Rights-Based Imperative for Persons with Intellectual Disabilities,” Matthew S. Smith, Tara Allison, and I demonstrate how paternalistic impulses to protect persons with intellectual disabilities from sexual abuse ultimately harm their decision-making ability regarding volitional sex, and thereby, paradoxically, expose them to further harm. Among these “protections” are overextensive guardianship authority, permitting group homes to control individuals’ movements and the company they keep, and requiring sexual competence certificates as a prerequisite to volitional intimacy. American constitutional or civil rights protections are unlikely to ameliorate this situation, and certainly not to a level that international human rights – and specifically, the Convention on the Rights of Persons with Disabilities (CRPD) – would mandate. Consequently, we pivot from legal protections to Elizabeth Emens’s “architectures of intimacy” conceptual framework as a means of compelling state action to remove barriers to intimate relations for persons with intellectual disabilities. Downloaded from https://www.cambridge.org/core. University of Birmingham, on 21 Jul 2020 at 20:08:29, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108622851.016

Introduction

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This chapter is very much focused on the harmful marginalization of people with intellectual disabilities, stemming from an overreliance on the disability as deficit model. Specifically, these individuals are placed within a particular disability category based on having IQs viewed as deficient relative to species-typical functioning people, pathologized as being unable to exercise rights to self-determination, and then “protected” from harm through guardianship procedures that fulfill this prophecy of ineptitude. A disability as difference model, as proffered by some philosophers and mandated by the CRPD, approaches the population from the opposite direction, presuming legal capacity that can be fulfilled either organically or in conjunction with support. This scheme is increasingly being implemented by CRPD-compliant governments as they break with retrogressive schemas predicted on the notion of disability as deficit. Each of these contributions highlights, in its own way, consequences of people with disabilities continuing to remain among the most marginalized and least socially accepted members of American society, despite several longstanding and progressive civil rights protections. This marginalization is well substantiated by, among other empirically verifiable data, a nearly 80 percent unemployment rate among working-age job seekers, a figure that is roughly ten times that of the relative overall national unemployment rate. And it is underscored by the fact that this unemployment rate, which links to poverty, social exclusion, reduced health and well-being, and decreased citizenship, has yet to elicit sufficient concern so as to manifest into a coherent (let alone constructive) federal policy despite being known for many decades – including being highlighted during the ADA’s passage. All three chapters suggest that an important first step to undoing the marginalization of persons with disabilities would be to recognize when disability is framed as a deficit and to guide policymakers and other stakeholders into recognizing the mere difference model of disability in its place.

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11 Making “Meaningful Access” Meaningful: Equitable Healthcare for Divisive Times Leslie Francis and Anita Silvers

Meaningful access to social participation sets a standard for repairing harms imposed by disability discrimination. To be meaningful, access must secure more for people for whom opportunity has been arbitrarily proscribed than merely ushering them through a newly unbolted door only to confront further barriers impelled by bias. Meaningful access to a social process is diminished or denied when individuals, due to disability, are prevented from achieving the benefits that generally motivate individuals to participate in that process. Yet interpreting the meaningful access standard has proved elusive for courts. An influential early decision made the illusory affirmation that the door was open to people with disabilities receiving Medicaid because they had the same fourteen days of eligibility for hospital care as others, even though they disproportionately required longer hospital stays to achieve similar care goals.1 Introducing what is now known as the “access–content” distinction, Samuel Bagenstos urges that meaningful access, and hence nondiscrimination, requires ensuring both unfettered access to programs and equitably achievable benefits or other goods from those programs.2 In this chapter, we argue that a different distinction, that between “accommodation” and “modification,” also is critical to achieving meaningful access. Accommodation pursues personalized adjustments or aids enabling particular individuals with disabilities to function successfully. Modification changes policies, practices, or environments generally to eliminate barriers that exclude groups or kinds of people from realizing programmatic benefits or goals. When an individualized accommodation is mischaracterized as a general modification, it may be condemned as unreasonably expensive or as fundamentally altering the service or benefit at issue. When misperceived as an individualized accommodation, a modification may be rejected as unfair privileging and become a source of resentment. 1 2

See Alexander v. Choate, 469 U.S. 287 (1985). Samuel R. Bagenstos, Law and the Contradictions of the Disability Rights Movement (2009).

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Leslie Francis and Anita Silvers I. SETTING THE STAGE: HOW ACCOMMODATION AND MODIFICATION WERE CONFUSED IN INTERPRETING THE REHABILITATION ACT

Section 504 of the Rehabilitation Act of 19733 prohibited denial of benefits, exclusion from participation, or discrimination under any program or activity receiving federal financial assistance.4 In the regulations implementing section 504, accommodation and modification were differentiated in a nuanced way for the arenas of employment, public services, and public accommodations.5 The seminal case interpreting section 504, Southeastern Community College v. Davis,6 however, confused accommodation and modification in a damaging way that persists today.7 In Davis, a hearing-impaired student sought admission to a nursing associate degree program, but was denied on the basis that she could not participate safely in the program’s clinical training. Her litigation strategy contended that her admission should be determined without consideration of her disability,8 and she introduced no evidence about requiring auxiliary aids needed as accommodations or supplemental program modifications. Rejecting Davis’s argument on admissions, the trial court credited the College’s testimony denying it could provide auxiliary aids and that Davis could participate safely in the program’s required clinical training with or without aids.9 The intermediate appellate court compounded the problem by failing to distinguish Davis’s request for auxiliary aids and the College’s contention that the nursing program would need to be modified for her to eliminate the clinical components. After reversing the trial court’s ruling on admissions,10 the Fourth Circuit gave further brief guidance to the trial court on remand to give adequate attention to 3 4 5

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Pub. L. No. 93–112, 87 Stat. 355 (codified as amended in scattered sections of 29 U.S.C.). Id. § 504(a), amended by Every Student Succeeds Act, Pub. L. No. 114–95, 129 Stat. 1802 (2015). For example, for employment by recipients of federal funds, the regulations required “reasonable accommodation to the known physical or mental limitations of an otherwise qualified applicant or employee unless the recipient can demonstrate that the accommodation would impose an undue hardship” 45 C.F.R. § 84.12(a) (1977). Accommodations could include acquisition or modification of equipment or devices and the provision of readers or interpreters. Id. § 84.12(b). For postsecondary educational programs receiving federal funding, “modifications” were required to academic requirements as necessary “to ensure that such requirements do not discriminate or have the effect of discriminating, on the basis of handicap, against a qualified handicapped applicant or student.” Requirements “essential” to the program, however, did not require modification. Id. § 84.44(a). Under the regulations, non-discrimination also required steps “necessary to ensure that no handicapped student is . . . subjected to discrimination . . . because of the absence of educational auxiliary aids for students with impaired sensory, manual, or speaking skills” without consideration of costs. Id. § 84.44 (d)(1), (2). 442 U.S. 397 (1979). But see Armen H. Merjian, Bad Decisions Make Bad Decisions: Davis, Arline, and Improper Application of the Undue Financial Burden Defense Under the Rehabilitation Act and the Americans with Disabilities Act, 65 Brook. L. Rev. 105 (1999). See Brief for Respondent, Davis, 442 U.S. 397 (No. 78–711), 1979 WL 213503, at *5. Davis v. Se. Cmty. Coll., 424 F. Supp. 1341, 1346 (E.D.N.C. 1976). Davis v. Se. Cmty. Coll., 574 F.2d 1158, 1160 (4th Cir. 1978).

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the regulatory requirement that auxiliary aids should be provided “even when such modifications become expensive.”11 With this language, the appellate court did not distinguish a request for auxiliary aids (such as sign language interpretation) from modification of the nursing program curriculum. The proper guidance under the regulations, however, would have been to consider requests Davis might make for auxiliary aids, and then to analyze whether program changes might have been needed to supplement these aids. As Davis reached the Supreme Court, the problem was deepened by a confusion between Davis’s request for accommodation as “affirmative relief” and affirmative action. The College framed the legal issues as whether section 504 precluded basing admissions on a disability that would interfere with safe patient care, and whether section 504 imposed an obligation to provide expensive affirmative accommodations.12 The Court answered both questions for the College, taking the College’s claims about Davis’s abilities as uncontested.13 This framing and the Court’s answer conflate importantly different issues about accommodations and modifications: How should Davis’s qualifications be assessed under section 504? May costs be considered in determining the reasonableness of auxiliary aids and services as accommodations? Will specific aids be effective accommodations for Davis to participate successfully in the clinical training? Would it be necessary or reasonable to modify the program to eliminate some or all of its clinical components if Davis were provided with auxiliary aids? Would any required modifications fundamentally alter the program? The analysis should have considered, first, what aids and services Davis required and, only then, whether any program modifications would be needed with these aids. Much more was said in briefs14 about the College’s obligation to provide auxiliary aids and the College’s stereotyping presumptions about Davis’s abilities with those accommodations. Ignoring Davis’s functional ability with aids, the Court accepted the College’s position that, for Davis, the program had to be fundamentally altered to eliminate its clinical components. Finally, in a damaging and unwarranted linguistic twist, the Court construed Davis as requesting “affirmative action” rather than relief in the form of any required auxiliary aids.15 This twist – that affirmative relief would be affirmative action in the sense the Court was finding problematic in other areas of civil rights laws16 – fueled 11

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Id. at 1162. This guidance was based on the regulations implementing section 504, which had been promulgated after the trial court’s decision. See Brief for Petitioner, Davis, 442 U.S. 397 (No. 78–711), 1979 WL 199912, at *3. 442 U.S. at 406. See, for example, Brief for Respondent, supra note 8, at *11 (“The College’s erroneous assumption that a hearing-impaired person cannot safely and effectively complete the educational requirements to become a registered nurse is contradicted by the very existence of many hearing-impaired persons safely and effectively performing in society every day as nurses, dentists and doctors.”) 442 U.S. at 407. The Court had rejected race-based affirmative action in the form of set-asides the year before it heard Davis, although it continued to permit race to be one of many factors in admission decisions. Regents of Univ. of Cal. v. Bakke, 438 U.S. 265 (1978).

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misunderstanding of both the auxiliary aid and reasonable modification ideas. The Court saw Davis as asking for close personal attention that was a form of personal services excluded by the regulation, not an “auxiliary aid.”17 Thus rejecting accommodation, the only alternative the Court saw was modifying the program to eliminate the clinical phase, a “fundamental alteration in the nature” of the program.18 Davis’s targeting of supposed affirmative action shaped the Court’s introduction of the “meaningful access” standard for nondiscrimination in Alexander v. Choate.19 Beset by budgetary woes, Tennessee reduced to fourteen the number of hospital days available annually to Medicaid recipients. People with disabilities sued, contending that the cutback’s differential impact on people with disabilities – who disproportionately required stays beyond the limit to achieve comparable health care goals – violated the Rehabilitation Act. Interpreting the Rehabilitation Act to encompass such disparate impact discrimination,20 Choate concluded that disparate impact must be kept “within manageable bounds,”21 with “fundamental alterations” being the limiting case of required “reasonable modifications”22 and “meaningful access” calibrating this balance.23 In Choate, the Court concluded that the state had delineated a benefit – fourteen days – to which people with disabilities, like other Tennessee Medicaid recipients, had meaningful access. The Court did not look past this benefit to see whether further barriers remained. Instead of the access–content distinction identified by other commentators,24 we suggest a more central distinction between accommodation and modification is being confused. The misinterpretation prolonged the mistake made in Davis of treating a civil right everyone ought to be able to deploy as unfair privileging resulting in stealth affirmative action. Davis had been portrayed as seeking privileging personal services. The Choate Court characterized the plaintiffs’ claim that the fourteen-day hospitalization limit denied them equitably meaningful access to a Medicaid’s benefit as a request to “guarantee that each recipient will receive that level of health care precisely tailored to his or her particular needs.”25 Such a provision would entail, the Court agreed, 17 18

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442 U.S. at 409. Of note in this connection, Davis had only asked for the trial court to consider on remand whether the College was justified in the complete refusal to make any “academic adjustments” for her or to make “any modifications to its nursing program . . . to enable qualified handicapped students to overcome their physical disabilities so that they can effectively participate in the post-secondary education program.” Brief for Respondent, supra note 8, at *36. 469 U.S. 287 (1985). See also Leslie P. Francis & Anita Silvers, Debilitating Alexander v. Choate: “Meaningful Access” to Health Care for People with Disabilities, 35 Fordham Urb. L.J. 447 (2008). 469 U.S. at 299. Id. Id. at 300. Id. at 301. See Samuel Bagenstos, Law and the Contradictions of the Disability Rights Movement 69–72 (2009). We have argued elsewhere that this position is misguided. See, for example, Leslie Francis & Anita Silvers, Reading Alexander v. Choate Rightly: Now is the Time, 6 Laws 17 (2016). 469 U.S. at 303.

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that disabled people’s health needs are “more important than others and more worthy of cure through government subsidization.”26 Thus, the Court saw the Choate plaintiffs’ request as excessive personalized accommodation and did not consider whether modest modifications to Tennessee’s program could enable people with disabilities to achieve goals comparable to those achieved by people without disabilities within the state’s cost constraints. Had the Court not been misled by the affirmative action analogy to mistake a claim for modifications as a claim for personal services, it might have recognized the actual request as a response to the cutback in better keeping with the balance between reasonable modification and fundamental alteration. Thus, the Court failed to apply the meaningful access standard, even as it promoted it. II. ACCOMMODATION AND MODIFICATION ACROSS THE TITLES OF THE ADA

In both language and structure, the ADA carefully delineates the differences between accommodation and modification instituted by the Rehabilitation Act. Nonetheless, to an extent we can only briefly reflect, courts continue to conflate accommodation and modification when meaningful access is sought. A troublesome trend confuses the (limited) desirability of uniformity or harmony of Rehabilitation Act and ADA standards with unconstrained and unsuitable homogenization of standards appropriate for the different arenas of employment, public services, and public accommodation. Unlike the Rehabilitation Act, the ADA addresses employment discrimination, public services, and public accommodations in separate statutory sections. Congress clearly intended differences among prohibited forms of discrimination in these arenas and captured these differences in the statute’s text. Roughly, “accommodation” occurs where individual adjustments might be most immediately relevant, for example in employment. “Modification” is used where access to the benefits of public services or enjoyment of public accommodations is in question. ADA Title I provides that it is employment discrimination to fail to make reasonable accommodations for known disabilities of an employee or applicant.27 Title I elaborates with a nonexclusive list of accommodations that may be required: making facilities accessible; changing job requirements, schedules, or assignments to enable the individual to perform essential job functions; and providing equipment, training, or readers, or interpreters for employees requiring them for communication.28 Undue hardship is a defense for the employer, and employers 26 27 28

Id. at 304. 42 U.S.C. § 12112(b)(5)(A) (2018). See Stockton v. Christus Health Southeast Texas, No. 1:15-CV-333, 2017 WL 1287550 (E.D. Tx. February 3, 2017) (employee has responsibility to inform employer of needed accommodation).

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are especially likely to succeed when requested accommodations burden other employees.29 Title II of the ADA, protecting qualified individuals with disabilities from discrimination by any public entity,30 uses “modification” as the term of choice. A “qualified individual with a disability” is “an individual with a disability who, with or without reasonable modifications to rules, policies, or practices, the removal of architectural, communication, or transportation barriers, or the provision of auxiliary aids and services, meets the essential eligibility requirements for the receipt of services or the participation in programs or activities provided by the public entity.”31 Notably, Title II does not include a hardship defense or require participants to make their disabilities known for modification to occur. Title III, the public accommodations section of the ADA, prohibits discrimination on the basis of disability “in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation.”32 Title III also specifies that it is discrimination to deny the opportunity to participate, to reduce opportunity to participate in a benefit so that it is “not equal to that afforded to other[s],” or to provide separate benefits unless necessary for the benefits to be equally effective as those provided to others.33 More specific prohibitions include “failure to make reasonable modifications in policies, practices, or procedures, when such modifications are necessary to afford such goods, services, facilities, privileges, advantages, or accommodations to individuals with disabilities, unless the entity can demonstrate that making such modifications would fundamentally alter the nature of such goods, services, facilities, privileges, advantages, or accommodations.”34 In enacting the ADA, Congress also was explicit that it did not want to create tension between the Rehabilitation Act and the ADA,35 as many lawsuits would arise under both statutes. In this respect, it makes sense for courts to interpret the Rehabilitation Act and the ADA as setting the same standards; however, courts should not forget that the ADA divides up nondiscrimination problems in a way that the Rehabilitation Act did not. While it surely would be problematic for Rehabilitation Act standards and ADA standards for employment to be out of 29

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For example, U.S. Airways, Inc. v. Barnett, 535 U.S. 39 (2002) (reassignment to light duty position not reasonable when seniority system assigns position to someone else). 42 U.S.C. § 12132 (2018). Id. § 12131(2) (emphasis added). See also, for example, Halpern v. Wake Forest University Health Sciences, 669 F.3d 454 (4th Cir. 2012) (medical student with ADHD had frequent lapses of professionalism and thus could not show he met essential eligibility requirements). 42 U.S.C. § 12182(a). “Full and equal enjoyment” is more robust language than the language of Title II. Id. § 12182(b)(1)(A)(i)–(iii). Id. § 12182(b)(2)(A)(ii) (emphasis added). The Rehabilitation Act specifies that its employment discrimination standards should be the same as those for ADA Title I. Rehabilitation Act of 1973 § 504(d), 29 U.S.C. § 794(d) (2018). The ADA legislative history is replete with statements that Congress intended the statutes to be parallel.

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harmony, or for Rehabilitation Act and ADA standards for public services to be out of harmony, or for Rehabilitation Act and ADA standards for public accommodations to be out of harmony, it does not follow that the standards for employment, public services, and public accommodations should be the same. Yet courts have persisted in confusing the standards for the three by conflating accommodations and modifications, thereby expanding available defenses against plaintiff’s claims. Olmstead v. L.C. ex rel. Zimring,36 the Court’s first major decision involving reasonable modifications in public services, illustrates this.37 In Olmstead, residents of a state institution desiring to live in the community challenged their continued segregated placement. The state’s position was that their placement was due not to disability discrimination but to inadequate funding of community-based facilities.38 The district court, in granting summary judgment for the plaintiffs, concluded that “unnecessary institutional segregation of the disabled constitutes discrimination per se, which cannot be justified by a lack of funding.”39 The court explicitly rejected any cost basis for segregating services: “The fact that it may be more convenient, either administratively or fiscally, to provide services in a segregated manner does not justify defendants’ failure to comply with the ADA.”40 The appellate court affirmed the judgment that confinement in a segregated institution was discrimination but remanded for further findings on the state’s defense predicting a fundamental service alteration due to increased demands on overall program resources.41 Here, the court referred to the state’s duties as “analogous to the reasonable accommodation mandate in the employment setting.”42 The accommodation analogy can mislead to the detriment of disabled plaintiffs, however. It conceptualizes the problem with the state’s program as failure to provide services for particular individuals rather than as flawed program design. The Court recast the fundamental alteration defense against modification, transforming it into an undue hardship defense against accommodation: “States are required to provide community-based treatment for persons with mental disabilities when the State’s treatment professionals determine that such placement is appropriate, the affected persons do not oppose such treatment, and the placement can be reasonably accommodated, taking into account the resources available to the State and the 36 37 38

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527 U.S. 581 (1999). See id. L.C. ex rel. Zimring v. Olmstead, No. 1:95-cv-1210-MHS, 1997 WL 148674 (N.D. Ga March 26, 1997). To reach this conclusion, the district court relied on Congress’s intent to prohibit unnecessary segregation, the Title II regulation requiring public entities to administer services in the most integrated setting, id. at *3, and the Title II regulation requiring reasonable modifications to avoid discrimination unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the service, 28 C.F.R. § 35.130(d) (1991). Olmstead, 1997 WL 148674 at *3. Id. at *4. L.C. ex rel. Zimring v. Olmstead, 138 F.3d 893 (11th Cir. 1998). 138 F.3d at 899.

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needs of others with mental disabilities.”43 Unconstrained by the narrow focus of the accommodation context, the appellate court would have permitted a somewhat broader range of features of the state’s program design to be considered, including not only whether the additional costs to treat the plaintiffs would be unreasonable given the demands of the state’s mental health budget, but also whether it would be unreasonable to require the state to use additional available Medicaid slots or otherwise transfer funds from institutionalized care to community-based care budgets, and whether the demands on the state budget would be reduced by the lesser costs of community-based care.44 III. ACCOMMODATION AND MODIFICATION IN HEALTHCARE: ACHIEVING MEANINGFUL ACCESS

Conceptualizing what is needed for access to be meaningful in terms of accommodation differs from conceptualizing in terms of modification. Meaningful access to healthcare presents a particularly clear example of the significant difference between accommodation and modification. Disentangling these two suggests a productive way forward for constructing a fuller analytic frame for determining whether patients lack meaningful access to healthcare.45 In this Part, we use the example of auxiliary aids for patients first to see why the difference between accommodation and modification may prove crucial. Then, we consider how the distinction can be deployed to show that cost increases are not fundamental program alterations. A. Auxiliary Aids: Accommodating Individual Patient Needs or Modifying Facility Policies Under both the Rehabilitation Act and the ADA, it is discrimination if patients are excluded from participation in or denied the benefits of medical care in healthcare facilities because of the lack of auxiliary aids and services for effective communication.46 Availability of auxiliary aids has been a persistent problem for patients with hearing impairments and their families, especially those using ASL interpreters.47 Viewing inadequate availability of these aids as failures to accommodate individual patients has quite different consequences than viewing them as collateral damage imposed by deeply problematic facility policies. On the former, the failure 43 44 45

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Olmstead v. L.C. ex rel. Zimring, 527 U.S. 581, 607 (1999). Olmstead, 138 F.3d at 905. Similar themes appear in the case law involving medical students and residents who are refused admission or dismissed from programs. 28 C.F.R. § 36.303(c)(1) (2018). For example, Leila Miller, “I was panicked”: Deaf Patients Struggle to Get Interpreters in Medical Emergencies, STAT (May 22, 2017), www.statnews.com/2017/05/22/deaf-patients-interpreters/.

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is harm to an individual patient; the latter requires changes in policies likely to affect future patients. When health care facilities lack adequately trained staff to process or evaluate requests for aids, rely on family members for interpretation, or do not have 24-hour availability of effective sign language interpretation, these problems arise from embedded practice that may affect anyone. Yet advocates find courts eliding the differences between these challenges as seeking reasonable modifications or as individual requests for accommodation.48 Results can be dire for achieving change. If discrimination claims are treated as failures of individual accommodation, courts conclude that plaintiffs lack standing unless they can show that they will need and want to use the healthcare facility again, as people who have experienced communicative difficulties at the facility may not want to do.49 Individual accommodation claims may be all that is at stake in any given case, but they will not solve problems for other patients coming to the facility and confronting inadequately trained personnel or defective technology. Achieving meaningful access thus may require long-term modification of embedded practice, programs, or policy rather than or in addition to short-term accommodation of current patients or clients. B. Meaningful Access to Medicaid: Costs Versus Program Goals Fiscally challenged states frequently seek to limit costly Medicaid programs by cutting benefits, closing facilities,50 paying providers so little that the services they can offer are sparse,51 narrowing classes of eligible beneficiaries,52 or decreasing service settings.53 If modification for meaningful access is mischaracterized as unfairly burdensome personalized accommodation, Choate, compounded by Olmstead, generates problems for challenging such reductions. Achieving equitable meaningful access requires calls for clarity about when modest modifications evolve into fundamental alterations. To illustrate, Medicaid section 1915(c) waiver programs permit states to offer costneutral home and community-based services to eligible recipients who would otherwise be in nursing homes. States may seek to control enrollment with eligibility or service limitations or long waiting lists. These access limits may be challenged as 48

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Another problem in this area is whether the standards for aids should be those of Title II or those of Title III, where there is an undue burden defense. See, for example, Sunderland v. Bethesda Hosp., Inc., 686 F. App’x 807 (11th Cir. 2017) (unpublished decision); Ervine v. Desert View Reg’l Med. Ctr. Holdings, LLC, 753 F.3d 62 (9th Cir. 2014). See Rodde v. Bonta, 357 F.3d 988 (9th Cir. 2004) (holding that a county decision to close a facility in which it had concentrated rehabilitative services without offering alternatives constituted disability discrimination). See, for example, Armstrong v. Exceptional Child Center, Inc., 135 S. Ct. 1378 (2015) (finding no private right of action for Medicaid providers to enforce section 30(A) of the Medicaid Act, 42 U.S.C. § 1396a(a)(30)(A) (2018), standards for state payments to providers). See Easley ex rel. Easley v. Snider, 36 F.3d 297 (3d Cir. 1994). See Helen L. v. DiDario, 46 F.3d 325 (3d Cir. 1995).

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denials of meaningful access, with the state contending fundamental alteration as a defense. Some courts view increased costs as sufficient for the defense, while others draw lines based on whether the state would be required to change program goals or whether all had meaningful access to program goals regardless of disability. Pennsylvania, for example, limited eligibility for home-based attendant care to people with physical disabilities who were also mentally alert.54 The stated goal of the program was to enable individuals to live independently and exercise control over their own lives, so, the state argued, people receiving the service should be able to make decisions about their attendant care services. The trial court found that the program had broader goals, including enabling people to live in the least restrictive environment, avoid inappropriate institutionalization, and seek employment,55 goals that might be achieved for people with mental disabilities with the reasonable program modification of providing surrogates.56 The appellate court reversed, disregarding the trial court’s finding of the program’s goals and permitting the state to show that removing the mental alertness requirement would modify the program’s essential nature or impose an undue burden.57 Involving a surrogate was not a reasonable modification because it would “change the entire focus of the program . . . from the provision of attendant care and its societal objectives for the physically disabled to personal care services to the many thousands of physically disabled who are often served by other specially designed state programs.”58 Further, the modification would “create an undue and perhaps impossible burden on the State . . . by forcing it to provide attendant care services to all physically disabled individuals, whether or not mentally alert.”59 The appellate court’s reasoning here could be understood as concluding that the state was providing meaningful access by limiting the benefit to the cognitively alert. This would be so if the state’s program goals were independent living for people who could make their own decisions. But if, as the trial court found, the goals were broader integration into the community, then the appellate court was wrong to conclude that the state’s eligibility criteria furthered meaningful access. Instead, the appellate court mischaracterized the plaintiffs’ request as for personal care services – a fundamental alteration which, not incidentally, could have vastly increased program costs. In another example, Medicaid residents in Washington challenged the state’s program that permitted community-based long-term care services for categorically needy but not for medically needy disabled Medicaid patients.60 The appellate 54 55 56 57 58 59 60

See Easley, 36 F.3d 297. Easley ex rel. Easley v. Snider, 841 F. Supp. 668, 673 (E.D. Pa. 1993). Id. at 677. See Easley, 36 F.3d at 302. Id. at 305. Id. at 305. See Townsend v. Quasim, 328 F.3d 511 (9th Cir. 2003). The “categorically needy” are those who fall below a specified asset and income level; the “medically needy” are those who fall below that level after their medical expenses are considered.

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court reversed the trial court’s determination that providing long-term care for the medically needy in the community would be a new program, since the state was already providing long-term care for the medically needy and would simply be including a new group of recipients in the existing program. However, the appellate court also was concerned about the impact on Washington’s overall program of the costs of serving additional individuals who might seek long-term care services if they were available in a community setting.61 Clearly, including a new class of beneficiaries similarly situated but for the economic basis of their qualification would not fundamentally change the services received by beneficiaries. But the court left it open to the state to show that, for cost-based reasons, including these new beneficiaries in the community-based long-term care program would disrupt the full range of programs available to others.62 Advocates for disability civil rights rightly sounded the alarm about this reasoning being purely cost-based.63 Subsequent decisions have indeed considered cost increases as fundamental alterations and have refused to require states to apply to expand the numbers of slots in their community-based services program as long as states have “genuine, comprehensive and reasonable” commitments to deinstitutionalization.64 Washington’s commitment did prove genuine; that state is one of a small number of states that does not have waiting lists for communitybased services as of the latest available data.65 For residents of the many other states with long and slow-moving waiting lists, “meaningful access” to the services is a promise as yet unfulfilled. Courts remain divided on the significance of claims about excess costs for determining when the fundamental alteration line has been crossed. We have tried to clarify the difference between situations in which, for example, some services would no longer be available or would need to be changed in character because, to take one possibility, the critical numbers of patients for whom those services made access meaningful would disappear, and circumstances in which reference to costs is invoked to justify reduced availability or quality or equitable usefulness of services. As for the latter attempt at justification, the gist of our argument is that the meaningful access mandate cannot be countered solely by invocations of expense. In sum, this chapter develops the suggestion that what is warranted as meaningful access 61 62

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See id. at 520–21. Here, the appellate court was following the Supreme Court’s decision in Olmstead v. L.C., 527 U.S. 581 (1999). The state’s concern in Olmstead, however, went further than costs, to the claim that it would be forced to close institutions and thus change the character of the benefit available to others. Nat’l Ass’n for Rights Prot. & Advocacy (NARPA), ADA Case of the Week, NARPA (January 2005), www.narpa.org/reference/ada-case-of-the-week. Arc of Wash. State Inc. v. Braddock, 427 F.3d 615 (9th Cir. 2005) (quoting Sanchez v. Johnson, 416 F.3d 1051, 1067 (9th Cir. 2005)); see also Sanchez v. Johnson, 416 F.3d 1051 (9th Cir. 2005). MaryBeth Musumeci, Data Note: Data Do Not Support Relationship Between Medicaid Expansion Status and Home and Community-Based Services Waiver Waiting Lists, Kaiser Family Foundation (March 22, 2018), www.kff.org/medicaid/issue-brief/data-note-data-do-not-support-relationshipmedicaid-expansion-hcbs-waiver-waiting-lists/.

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should not be determined by whether expenses for the state would rise, even significantly. Meaningful access challenges turn on whether program policy inclusively aims at, and program practice inclusively realizes, goals that induce various kinds of people to participate, thereby offering access that is equitably meaningful for all. Approximately one in five US adults self-identifies, or is identified at least in some ways, with the minority of the population who consider themselves or are considered by others to be disabled. When policy is formulated and practice fashioned, however, we face familiar failures to provide for meaningful participation for this profoundly nonhomogenous group. As we have seen, courts have exacerbated this problem by seeking potential remedies in individualized accommodation rather than in generalized modifications. They thus pull back from opportunities to invite regulation for all, policy and practice development equitable for everyone in which consideration of the disabled minority has taken a lead. IV. CONCLUSION

In this chapter, we have pointed out that personalized accommodations and generalized modifications to practice and policy are distinct strategies to achieve meaningful access, responding on the one hand to personal differences, and on the other hand to group needs. Yet courts may construe cases that should be seen as requests for accommodations as instead requests for modifications, and the reverse, with troubling results. Courts have engaged in the confusions we cite, often but not always unfairly to people with disabilities seeking to gain access or to make meaningful their access to programs or societal processes other people already enjoy. We have not attempted to explore why courts do so beyond noting occasions when erroneous analogical reasoning has occurred. ADA-inspired modification may call for putting access for minority groups such as those with different kinds of disabilities first rather than privileging access suited mainly to homogeneous majorities. We speculate that the considerable challenges of crafting the routes to justice for all that such difference-catering policies and practices may achieve can explain shifts in focus from generalized modification to individualized accommodation.66

66

For a strategy to identify this kind of majoritarian epistemic injustice, see the discussion of the strategy of historical counterfactualizing in Anita Silvers, Formal Justice, in Disability, Difference, Discrimination 129 (Anita Silvers et al. ed., 1998).

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12 The Privacy Problem in Disability Antidiscrimination Law Jasmine E. Harris

Privacy and disability have an odd relationship. States, communities, and families, sometimes forcibly, have hidden people with disabilities from public view and engagement.1 In the shadow of a history of forced isolation and as a way of managing the stigma of disability, people with disabilities have, at times, rejected their public identity as disabled. While some people may explicitly deny disability identity for a host of legitimate reasons, more often, people with disabilities capable of “passing” choose to move in the world without disclosing their disability identity even when disclosure can lead to greater access to services, accommodations, or other benefits.2 At other times, people capable of passing who wish to disclose are discouraged and, at times, prevented from disclosing. Consider the following example. Eva and Madeline, two high school student editors, wanted to devote an issue of their school newspaper to the experiences of students with depression, including their own.3 The school administration, however, prevented publication, citing student privacy rights. Eva and Madeline wanted to use their own and other students’ actual names, with their consent and the consent of their parents, as part of an effort to normalize mental disability among young people. The school administrators argued that disclosure would only lead to potential bullying in the short-term, and regret later in life – for example, in college admissions and employment applications – because the students would lose control over this “damaging” information if published. Ultimately, Eva and Madeline published an opinion piece in the New York Times and received national attention 1 2

3

See, for example, Susan M. Schweik, The Ugly Laws: Disability in Public 3–5 (2009). The central arguments related to privacy may appear at first blush to have greater salience for people with less apparent physical or mental disabilities, those who may be more capable of passing, and have the choice of whether to disclose. However, people with physical and mental disabilities that may be more ambiguous but still violate body or behavioral norms may generate social anxieties in the nondisabled person. See generally Jeffrey A. Brune & Daniel J. Wilson, Introduction, in Disability and Passing: Blurring the Lines of Identity 1, 5–11 (Jeffrey A. Brune & Daniel J. Wilson eds., 2013). See Students Struggle with Depression – And With Telling The Story (National Public Radio broadcast May 24, 2014), www.npr.org/2014/05/24/315445104/students-struggle-with-depression-and-with-tellingthe-story; see also Madeline Halpert & Eva Rosenfeld, Depressed, but Not Ashamed, NY Times, May 21, 2014, at A29.

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for their efforts to destigmatize mental disability. Even after a public outpouring of support, the high school administration maintained its position against disclosure. What explains the school’s response to the possibility of publicity? School administrators regulated the disclosure of disability identity by framing their objections, in the first instance, as a violation of privacy laws, designed to protect confidential medical information.4 However, this framing conflates disability identity with private medical information. Interestingly, the school’s secondary objections used privacy as a favored prescription for disability discrimination, a way to protect the students who identified as people with mental disabilities from bullying, embarrassment, and bias. Eva and Madeline’s experience spotlights an unexplored tension between privacy and three core values underwriting disability antidiscrimination law: integration, acceptance, and destigmatization. The story illustrates the ways in which privacy regulates identity and, at times, can be misdirected to force people to be in the closet about their disabilities. The school’s response denied the students an opportunity for individual and collective “coming out,” and the personal (and collective) benefits that publicity brings. The privacy approach to disability rights law – that the stigma surrounding disability warrants protections and incentives to conceal rather than disclose one’s identity as a person with a disability – has gone largely unchallenged by legal scholars and policymakers in both disability rights and health law.5 In fact, some antidiscrimination scholars have argued affirmatively that privacy protections for disability status should be heightened as an explicit strategy to combat bias.6 In other words, like the position of the high school administrators, potential discriminators – employers, government institutions, private actors – cannot discriminate based on information they never have access to in the first place. This chapter explores the tension between privacy and disability rights. I argue that favoring privacy over publicity to achieve antidiscrimination goals is not without cost. Current scholarly discussions do not accord sufficient weight to the individual and collective benefits of publicity, or coming out, as a person with a disability. This chapter explores the value of publicity to ensure a more balanced conversation. Admittedly, personal privacy interests weigh heavily in any calculus seeking to reduce discrimination primarily because any decision to define or disclose one’s identity is fundamentally an exercise of personal agency. In the disability context, in particular, we should cautiously approach reductions in personal privacy given a history of state surveillance. 4

5 6

See, for example, Family Educational Rights and Privacy Act of 1974, 20 U.S.C. § 1232g (2013); Health Insurance Portability and Accountability Act of 1996, Pub. L. No. 104–91, 110 Stat. 1936 (1996). See generally Jasmine E. Harris, Processing Disability, 64 Am. U. L. Rev. 457 (2015). See, for example, Bradley A. Areheart & Jessica L. Roberts, GINA, Big Data, and the Future of Employee Privacy, 128 Yale L. J. (forthcoming 2019); Jessica L. Roberts, Protecting Privacy to Prevent Discrimination, 56 Wm. & Mary L. Rev. 2097 (2015).

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This chapter proceeds in three parts. Section I explains why treatment of disability identity as a private fact is problematic. Although stakeholders generally agree about the core values of the Americans with Disabilities Act (ADA) – the central remedial statute in disability rights law – the treatment of disability identity as private may be counterproductive to fundamental normative shifts anticipated by Congress. Section II imagines what a publicity approach might look like to gently nudge public disclosure of disability identities. Section III applies a critical lens to the current scholarly treatment of this issue and offers preliminary questions for future exploration. I. PRIVACY AS PROBLEMATIC

This Part provides a deeper analysis than currently exists in the literature on the role of publicity in antidiscrimination efforts. The benefits of publicity to disability rights become clearer once we disentangle disability identity from medical information.7 A. The Normative Values of Disability Rights Law Scholars and courts may disagree about many aspects of disability rights law; however, most can agree on at least one normative organizing principle: “the right to live in the world,” first expressed by Professor Jacobus tenBroek during the 1960s.8 Professor tenBroek criticized the state’s “custodial” approach to disability, which emphasized protection of people with disabilities as vulnerable, dependent wards of the state. He argued that “integrationism” and not “custodialism” should underwrite government responses to disability as it did in other areas such as race, ethnicity, and gender. This principle gets expressed in different ways in constitutional and statutory law and doctrine – for example, destigmatization, antisubordination, or meaningful access – and paved the way for the Americans with Disabilities Act in 1990.9 While the ADA sought economic independence for people with disabilities (this was part of its bipartisan power),10 Congress also expressed an explicit desire to address underlying social inequalities that led people to discriminate in the first place. Congressional findings11 and the legislative history of the Americans with 7

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9 10

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The conflation of disability identity and medical information is a product of a number of historical factors including the rise of the welfare state, the creation of disability certification as an administrative tool, and the donning of medical professionals as gatekeepers of medical certification and rehabilitation. For a more detailed discussion, see Mary Crossley, The Disability Kaleidoscope, 74 Notre Dame L. Rev. 621 (1999). Jacobus tenBroek, The Right to Live in the World: The Disabled in the Law of Torts, 54 Cal. L. Rev. 841 (1966). 42 U.S.C. § 12101 (2008). See Samuel R. Bagenstos, The Americans with Disabilities Act as Welfare Reform, 44 Wm. & Mary L. Rev. 921, 957–58 (2003) (describing the “welfare reform” justification for the ADA that made bipartisan support possible in a political climate increasingly hostile to the expansion of civil rights). 42 U.S.C. § 12101(a)(2) (2008) (“Historically, society has tended to isolate and segregate individuals with disabilities, and . . . such forms of discrimination . . . continue to be a serious and pervasive social problem.”)

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Disabilities Act, for example, articulate the pervasive social, economic, and political discrimination experienced by people with disabilities.12 Similar to the Civil Rights Act of 1964, the ADA focuses federal antidiscrimination efforts in three areas: employment and access to public services, programs, and places of public accommodations by public and private entities. By physically occupying more public spaces, the belief was that intergroup interactions would naturally reduce prejudice.13 The National Council on Disability, a federal agency responsible for the monitoring and assessment of the ADA, concludes that the ADA has “begun to transform the social fabric of our nation.”14 For example, the “placement of disability discrimination on par with race or gender discrimination” has “permanently changed the architectural and telecommunications landscape of the United States.”15 B. Values in Tension with a Privacy Approach Although legal scholars tend to agree that the ADA’s focus on greater access and integration has resulted in greater visibility of people with disabilities in public spaces, they lament the limited remedial reach of the ADA to effectively advance the normative values articulated in the previous Section.16 Prescriptively, legal scholars have called for substantive legal amendments to the ADA or doctrinal shifts, or attention to other bodies of law – such as welfare laws or, as some antidiscrimination scholars prescribe, privacy laws – to supplement the work of antidiscrimination legislation.17 However, legal scholars have not challenged privacy’s capacity to achieve desired normative reforms.18 A privacy approach raises several concerns. First, disability identity is distinct from medical information and we ought to see it as such. Disability identity and medical records are two distinct categories of information that may lead us in two different regulatory directions with respect to privacy. This untethering of disability identity from medical information more closely tracks the advocacy position of people with

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42 U.S.C. § 12101(a)(5) (2008). But see Jasmine E. Harris, The Aesthetics of Disability, 119 Colum. L. Rev. (forthcoming 2019) (challenging an uncritical reliance on contact as the theoretical foundation for integration). Nat’l Council on Disability, Promises to Keep: A Decade of Federal Enforcement of the Americans with Disabilities Act (2000); see also Nat’l Council on Disability, National Disability Policy: A Progress Report, Has the Promise Been Kept? Federal Enforcement of Disability Rights Laws (2018). Nat’l Council on Disability, National Disability Policy, supra note 14. See, for example, Harris, supra note 5, at 476. See, for example, Samuel R. Bagenstos, The Future of Disability Law, 114 Yale L. J. 1, 4–6 (2004) (welfare law); Jessica Roberts, Health Law as Disability Rights Law, 97 Minn. L. Rev. 1963, 1965 (2013) (health law); Roberts, supra note 6, at 2101 (privacy law). Cf. Bradley A. Areheart, Information Privacy: GINA, Privacy, and Antisubordination, 46 Ga. L. Rev. 705 (2012) (raising questions about the potential tension in goals between GINA’s work as a privacy law and its antisubordination mission).

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disabilities themselves, who have called for a fundamental shift in perspective from regulatory use of and preference for a medical model of disability. Second, acceptance and destigmatization require a certain degree of publicity in practice. The power of integration and increased visibility of disability only works if the pervasiveness of disability in society comes to light and we recognize disability as a part of human variation rather than a defect or “bad difference” to be mourned, disguised, or eradicated.19 Legal scholars in other areas have mined the social science literature and imported lessons regarding ways to reduce social stigma.20 An undifferentiated privacy approach to disability rights pushes the normative work we need to do into the closet, simply delaying – perhaps indefinitely – the necessary engagement with the emotional components of disability discrimination that make these norms particularly “sticky” and difficult to shift.21 Discrimination is relational and any remedial response must address the target as well as the discriminator.22 While the law has tended to shy away from emotions in favor of a distinct realm of reason, humanities and social sciences teach us that emotion is a critical dimension of discrimination and, thus, should be an equally important part of remedial responses.23 From the perspectives of both the discriminator and the target, disability prompts a range of possible learned affective responses such as discomfort, shock, pity, existential anxieties about one’s mortality, aesthetic anxieties, disgust, hate, fear, or at the other end of the spectrum, attraction, desire, love, and lust.24 Privacy, at first blush, for people with less visible disabilities, appears to assuage these emotions by suppressing them so neither party has to immediately confront them. However, nondisclosure simply creates a false sense of security with direct and collateral costs. For example, by not openly claiming disability as part of identity, the individual invests emotional capital in concealment and may internalize the discrimination as a personal failing rather than a structural problem.25 There also may be ethical and moral ramifications of nondisclosure for the individual.26 The discriminator, when 19 20

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See Elizabeth Barnes, The Minority Body: A Theory of Disability 54–77 (2016). See, for example, Russell K. Robinson, Perceptual Segregation, 108 Colum. L. Rev. 1093, 1094 (2008) (advocating for the incorporation of the cognitive perceptions of “outsiders” when discerning racial and other discrimination). See generally Dan M. Kahan, Gentle Nudges vs. Hard Shoves: Solving the Sticky Norms Problem, 67 U. Chi. L. Rev. 607 (2000) (distinguishing the force needed to shift varied social norms). See Harris, supra note 5, at 489–92. See, for example, David DeSteno et al., Prejudice from Thin Air: The Effect of Emotion on Automatic Intergroup Attitudes, 15 Psychol. Sci. 319, 319 (2004). See Harlan Hahn, The Politics of Physical Differences: Disability and Discrimination, 44 J. Soc. Issues 39, 43 (1988). See, for example, Kenji Yoshino, Assimilationist Bias in Equal Protection: The Visibility Presumption and the Case of “Don’t Ask, Don ‘t Tell,” 108 Yale L. J. 485, 544 (1998) (relating harms engendered by nondisclosure); Alice MacLachlan, Closet Doors and Stage Lights: On the Goods of Out, 38 Soc. Theory & Prac. 302, 308–09 (2012). See, for example, MacLachlan, supra note 25, at 308 (“The non-out individual must pretend to be heterosexual/cisgender, and refrain from correcting others when they assume that she is. Her ability to

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faced with a person with an undisclosed invisible disability, maintains a negative affective responsive (even if suppressed or unacknowledged) and controls his selective engagement with the stigmatized identity characteristic, disability. Third, government regulation of disclosure of disability status perpetuates the paternalism that infects this area of law and assumes that privacy is empowering to the individual in absolute or relative terms. The work of legal scholars such as Professor Kenji Yoshino calls into question this position.27 This happened in the LGBTQ movement as well. People who identify as LGBTQ demanded their right to self-determination and expression of their identities in employment, public spaces, and other areas of public life. Thus, a key move here is to see the contemporary privacy approach as a direct consequence of the history of disability regulation based on constructed dependency that conflates medical information with identity. Akin to critical legal theorists, my intent is to surface and challenge the privacy approach as a “natural” prescriptive response. Once we see disability identity as distinct, we can critically examine the stakes of nondisclosure of disability status with respect to the broader normative aspirations of disability rights law. Similarly, this approach allows us to regulate medical information and disability status differently. II. PUBLICITY AS ANTIDISCRIMINATION LAW

Section II explores the potential of publicity to achieve greater acceptance and destigmatization of disability identity. The purpose of this chapter is not to operationalize a counter-privacy approach. It is a preliminary step in critically examining our historical approach and surfacing counter-stakes and costs associated with making disability identity “confidential.” A. Publicity As Prescriptive Publicity may better advance the normative values of disability rights law. Most significant is the lack of public contestation with disability to date which, at least initially, was a product of its history and, today, is a choice. Disability rights scholars, such as Professor Michael Waterstone, have argued persuasively that the unimpressive normative shifts directly flow from an absence of public debate about the nature of disability, society’s commitment to remedy discrimination in this area, and the specific social investments, stakes, and tradeoffs at play.28 Consequently, the “costs of easy victory” include narrow judicial interpretations of the scope and remedial reach of the ADA, legislative backlash with respect to the requirements for private

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relate to others . . . takes on a deceitful or fraudulent character, even if the deceit is limited to lies of omission.”) See, for example, Yoshino, supra note 25, at 492. Michael E. Waterstone, The Costs of Easy Victory, 57 Wm. & Mary L. Rev. 587, 615 (2015).

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entities to ensure access to places of public accommodations, news stories about predatory lawyers and serial plaintiffs forcing businesses to close their doors, and widespread fraud with respect to the use of support animals in places of public accommodations. Second, if disability is about the way in which society responds to differences in physical and mental functioning, then publicity forces us to confront, rather than delay, the range of socially unacceptable reactions. Effective confrontation may require contextualization, framing, and permission for people to work through difficult (and deeply seated) feelings. Third, part of what makes privacy such a problematic approach to disability rights has been its suppression of information about the existence of a continuum of human capabilities. Publicity diversifies our understanding of what disability looks like when friends, family, and community members “come out” and nondisabled persons witness the competence and complexity of disabled, as well as nondisabled, people. Over time, people may be more likely to map themselves onto a continuum that normalizes disability. We have powerful examples of the ability of publicity rather than privacy to advance norms of acceptance and destigmatization of a disfavored characteristic or trait. Consider a host of socially and politically disfavored aspects of identity that are invisible and the effects of publicity to advance their acceptance: sexual identity (heterosexual, gay, lesbian, or bisexual); political identity (Republican, Democrat, or Independent); religion (Catholic, Jewish, Muslim, Protestant, Buddhist, Atheist); criminal status/history (ex-offender, ex-felon); immigration status (undocumented, citizen); or, most recently, shared experiences (sexual assault survivor). I recognize that several legitimate reasons exist for the selective, delayed, or nondisclosure of disability status.29 For example, if the individual does not see disclosure of identity as beneficial or sees publicity as a significant cost to individual authenticity, then its strategic value for the collective identity of people with disabilities and public educative function may become morally suspect, treating the individual as a means to an end rather than an individual capable of exercising agency. B. A Path Forward: Carrots Not Sticks Perhaps a better way to think about disability law, then, is as publicity. Social movements like the LGBTQ movement show us that disclosure matters but also comes with costs. People experience strong affective responses to disability whether or not they appear corporally. Privacy has won out to date and nondisabled (and 29

The very binary discourse of “closeted” and “out” can be problematic by implying that normal is coming out, and you are not proud or true to self if you cover or pass. There is also a concern about negative effects of disclosure on state regulation of that identity. For example, as individuals who identify as LGBT disclosed and gained control over identity, the unspoken social contract of entitlements exchanged for state-imposed identities was a less effective strategy.

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many people with disabilities) prefer to closet disability rather than expose it because of the discomfort and uncertainty it produces in social interactions. What role can (and should) law and public institutions play in this story? While law alone will not (and has not) generated major shifts in public attitudes about people with disabilities, law certainly has a proven role.30 Law and policy have explicitly called for privacy and nondisclosure in the context of military service and LGBTQ identity pursuant to “Don’t Ask, Don’t Tell,” for example, with negative results.31 More directly, how can disability rights law nudge individuals to disclose disability identity in service of the broader normative shifts? Consider, for example, the ways in which constitutional doctrine privileges privacy in the context of race and sex. Regulation of race or sex is entitled to heightened scrutiny at least in part because these defining traits “mark individuals with immutable visible characteristics.”32 By offering heightened protections for those who cannot “cover” or “pass,” the “judiciary is subtly encouraging groups comprised by such classifications to assimilate by changing or hiding their defining characteristic.”33 The message is clear: if you can pass because you have a less apparent disfavored characteristic or trait, you should conceal it, if for no other reason than to avoid the potential for discrimination experienced by those with apparent, immutable traits. But as the previous Section discussed, passing is not costless. In the context of less apparent disabilities, an individual with dyslexia, for example, may trade access to a necessary accommodation in the workplace or classroom – a legal entitlement – for an opportunity to conceal disability and avoid potential social stigmatization. The costs assumed by the person may be monetary (e.g., paying out of pocket for audio versions of written texts or enlargement of the print). Costs also may be performative or qualitative (e.g., instead of requesting extra time on an examination which would allow the student to complete the exam, the student may be able to finish only a third in the standard time allotted, resulting in a less desirable or perhaps failing grade that does not reflect actual achievement or mastery of the material).34 Why (and when) do people with disabilities self-identify as a person with a disability? People may self-identify for political mobilization, as they did with respect to the disability rights movements in the 1970s.35 Or, people may choose to 30 31 32

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See Harris, supra note 5, at 489–92. See Yoshino, supra note 25, at 492–93. Yoshino, supra note 25, at 487 (“A classification will therefore be less likely to receive heightened scrutiny if its defining traits can be altered or concealed.”) Id. A rich literature critiquing this position exists. See, for example, John Hart Ely, Democracy and Distrust 150 (1980) (using the example of physical and intellectual disability to challenge the doctrinal reliance on “immutability”). See Ruth Colker, Test Validity: Faster is Not Necessarily Better, 49 Seton Hall L. Rev. (forthcoming 2019). See Joseph P. Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (1994).

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identify as a form of identity pride and self-expression, for example, in conversations with others or on employment surveys collecting demographic data for diversity purposes. Yet another reason for self-identification could be to access benefits or legal protections as in eligibility for Medicaid, Social Security, or seeking redress for discrimination or reasonable accommodations under the Americans with Disabilities Act. One study showed that severity of the disability, age and income, and stigma played the strongest roles in predicting whether an individual with a disability would self-identify, with stigma as the strongest predictor of selfidentification.36 In other words, the more participants in the study had experienced social stigma because of their impairment, the more likely they were to identify as a person with a disability. While social science in the area of disability identity is still in its nascent phase, recent studies on self-identification show that individuals underidentify as people with disabilities despite having impairments.37 Empirical studies offer opportunities to demonstrate the value of self-identification and disclosure not only as a sociopolitical strategy, but also because self-identification offers positive outcomes including greater self-esteem, satisfaction with life, political engagement, resilience and resistance to stigma, and lower psychological distress. In a recent study, participants with an impairment who did not self-identify as a person with a disability reported lower self-esteem and greater stigma than people without disabilities, whereas those participants in the study with impairments who self-identified as persons with disabilities had the same levels of self-esteem and perceived-esteem as people without disabilities.38 Furthermore, self-identification as a person with a disability also correlates with greater requests for reasonable accommodations and self-advocacy in the workplace. The “coming out” process for gays and lesbians changed the conversation regarding privacy as a prescription for discrimination. “The presumption that certain persons ought to come out as themselves – whatever that might mean” – is the new norm in the LGBTQ communities.39 As people realized their brothers, teachers, friends, coworkers were gay, they often, though not always, confronted general affective responses associated with nonheteronormative sex. Disability is not the same as sexual identity, but certainly has deeper connections with these civil rights movements than perhaps race or gender. We may consider crafting legislative or administrative carrots to encourage voluntary disclosure of disability identity. One way the state (intentionally or unintentionally) nudged normative shifts in 36

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See Kathleen R. Bogart et al., Who Self-Identifies as Disabled? An Examination of Impairment and Contextual Predictors, 62 Rehabilitation Psychol. 553, 558 (2017). See id. at 554. Holly McCartney Chalk, Disability Self-Identification in Emerging Adults: Relationship with Self-Esteem, Perceived Esteem, Mindfulness, and Markers of Adulthood, 4 Emerging Adulthood 200 (2015) (concluding that only 28 percent of people with impairments surveyed for study self-identified as people with disabilities). See, for example, MacLachlan, supra note 25, at 304.

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perceptions about individuals who identify as gay or lesbian was through the regulation of civil unions and the provision of benefits and services in exchange for disclosure. Such legal recognition was a significant step in the direction of striking down the Defense of Marriage Act in Obergefell v. Hodges. Finally, when highly successful public figures have come out and disclosed the existence of otherwise less apparent disabilities, the response has been powerful. Consider Justice Sonia Sotomayor’s claims to diabetes, which society has not rendered as disabling.40 While I recognize diabetes can be disabling, Justice Sotomayor’s identity claim changes the view about the helplessness or incapacity of those with diabetes. Similarly, when David Boise, a nationally recognized litigator,41 disclosed his dyslexia, the disclosure confronted misperceptions about dyslexia, a learning disability, as related to inferior intelligence and achievement.42 In fact, congressional members’ claims to disability and self-identification as people with disabilities gave credence to the intended normative mission of the ADA during its drafting and propelled the Act’s promulgation.43 III. CHALLENGING PRIVACY AS PRESCRIPTIVE

Opponents to the publicity approach advanced in the previous Section raise valid concerns about the misuse of disability identity and medical data. First, privacy is a luxury often absent from the lives of people with disabilities44 and, thus, consistent with greater integration and normalization of disability, we ought to extend privacy protections to afford opportunities for anonymity. The state is a fixture in the daily lives of people with disabilities from the provision of healthcare, housing, and financial assistance, to education, habilitation, and employment. People with disabilities experience high rates of poverty, unemployment, and institutionalized living and, as a result, rely more on public benefits programs – such as Medicaid, Medicare, cash assistance, and food stamps – than nondisabled people.45 However, access to these benefits comes at a cost. Federal, state, and local governments act as data clearinghouses, requesting and collecting such information as demographics, health, and employment to determine service eligibility and to monitor the operation of state-operated and state-funded programs. In fact, access to basic “mainstream privileges,” such as transportation (e.g., parking placards, reduced fare bus 40

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Notice the rhetorical move. Justice Sotomayor did not “overcome” her disability and achieve “in spite of” her disability, the oft-employed language of exceptionalism. David Boise litigated high profile cases like U.S. v. Microsoft and Bush v. Gore. See Joseph Milowic III, Quinn Emanuel Partner Suffers from Depression and He Wants Everyone to Know, N.Y. L. J. (March 28, 2018), www.law.com/newyorklawjournal/2018/03/28/quinn-emanuelpartner-suffers-from-depression-and-he-wants-everyone-to-know/?cmp=share_twitter. See Lennard J. Davis, Enabling Acts: The Hidden Story of How the Americans with Disabilities Act Gave the Largest U.S. Minority its Rights (2016). See, for example, Ena Chadha, Human Rights Disclosure Litigation: Uncovering Invisible Medical Records, 28 Windsor Y.B. Access to Just. 153, 180 (2010). See Nat’l Council on Disability, Deinstitutionalization: Unfinished Business 22 (2012).

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passes, travel with a service animal) or reasonable accommodations, requires identification as a person with a disability, medical certification, and release of medical information to the state and/or third parties.46 Second, in addition to data privacy and because of the institutional designs discussed above, people with disabilities may require more formal and informal supports for daily living than nondisabled peers from family or private sources. Since many people with disabilities live in community settings, they often live highly regulated lives.47 As a result, there is a significant risk of collateral regulation of decisions that are outside of the purview of a support institution or individual, such as personal decisions to drink alcohol, smoke, eat certain foods, or associate with certain people. Relatedly, people with disabilities may have less access to social networks to develop friendships, as well as romantic and sexual relationships.48 The Supreme Court has not yet addressed the applicability of its privacy jurisprudence to people with disabilities in the context of reproductive rights, sexual agency, marriage, or child-rearing.49 Third, unlike people with visible disabilities, those with invisible disabilities possess “evasive power” precisely because they have more discretionary control over disclosure of their identities and are less susceptible to bias or snap judgments based on more visible disabilities.50 Why should we encourage those with the ability to escape discrimination to accept the risks associated with disclosure? In the context of addressing disability discrimination, therefore, some antidiscrimination scholars have argued that privacy and nondisclosure of disability status may be the preferred path to civil rights protections. In other words, we should more formally classify disability status as medical information subject to heightened privacy protections under the Health Insurance Portability and Accountability Act and reframe other statutes, such as the Genetic Information Nondiscrimination Act and the Americans with Disabilities Act, as privacy statutes.51 Professor Jessica Roberts, for instance, argues that privacy and antidiscrimination laws “operate symbiotically rather than separately,” such that rather than silo privacy law, it can do the work of antidiscrimination law and vice versa.52 Privacy law, she contends, may be more effective than typical antidiscrimination protections, as it operates at an earlier stage, rendering prohibited discriminatory conduct impossible by impeding access to information in the first place. 46 47

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See Chadha, supra note 44, at 181. See Nat’l Council on Disability, supra note 45, at 22 (“Many of us don’t live in institutions but lead institutional lives.”) See, for example, Forziano v. Indep. Group Home Living Program, 613 F. App’x 15 (2d Cir. 2015) (affirming denial of right to cohabitate in group home to married couple with intellectual disabilities). See Jasmine E. Harris, Sexual Consent and Disability, 93 N.Y.U. L. Rev. 480, 485 (2018). Yoshino, supra note 25, at 544. See Areheart and Roberts, supra note 6, at 62–69; Roberts, supra note 6, at 2147–56. Roberts, supra note 6, at 2101. I am concerned in this chapter with the claim that privacy can do the work of antidiscrimination law more effectively than publicity.

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In fact, disability rights advocates originally called for a broad restriction of employment testing that could identify people with invisible disabilities that were understood to be highly stigmatizing, such as HIV. The legislative history of the ADA supports an understanding that “being identified as disabled often carries both blatant and subtle stigma.”53 In the context of employment searches, the fear was that identification as a person with a disability before one has established a work record subjects the disabled individual to “severe stereotyping and hostility on the part of coworkers because of their medical conditions.”54 Similar concerns drive discussions about genetic testing and access to health insurance. Advocates of greater privacy protections, therefore, raise valid concerns about the misuse of both medical information and, by association, disability identity, as grounds for explicit or implicit bias; however, the benefits of publicity demand greater attention in current discussions. IV. CONCLUSION

Lawmakers, courts, and society must engage the central question raised in this chapter as to whether the current privacy approach advances the principle norm of disability rights law: the right to live in the world. If, as this chapter argues, privacy undermines the very values disability rights law seeks to develop, then we should consider incorporating a more publicity-oriented approach, particularly given the success of other social movements with this strategy. As the high school students in the introductory vignette recognized, publicity can be costly, but so can privacy, in the ways discussed in this chapter. The call here is to engage in an informed debate about the values at work and tradeoffs we currently make and, normatively, should make in service of disability rights.

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See, for example, H.R. Rep. No. 101–485, pt. 2, at 75 (1990). Sharona Hoffman, Preplacement Examinations and Job-Relatedness: How to Enhance Privacy and Diminish Discrimination in the Workplace, 49 Kan. L. Rev. 517, 529 (2001).

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13 Sexual Agency As a Rights-Based Imperative for Persons with Intellectual Disabilities Matthew S. Smith, Tara Allison, and Michael Ashley Stein

Long perceived as sexually aberrant, persons with disabilities have made headway in recent years breaking down societal and attitudinal barriers that exclude many from leading sexually active lives.1 This progress has been uneven, often depending on a person’s type of disability. For example, evolving societal attitudes support the equal right of persons with physical disabilities to sexual intimacy, even if the means by which to fulfill this right (e.g., accessible social clubs) remain elusive.2 By contrast, persons with intellectual disabilities seeking volitional sex still face multitudinous attitudinal barriers.3 Guardians, caregivers, and service providers’ paternalistic beliefs often reify as formal impediments that eviscerate their sexual potential – including, strikingly, sexual consent capacity evaluations.4 Such hindrances are rationalized on nebulous health and safety concerns5 even as service providers increasingly utilize rights-based rhetoric when highlighting practices furthering autonomy, independence, and inclusion in other life areas.6 Regrettably, United States constitutional and civil rights protections are unlikely levees against paternalist currents eroding the 1

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See, for example, Italian Stallion, Pen Pal, Hope and LOL, The Moth, (February 15, 2010), https:// themoth.org/stories/italian-stallion (Janice Bartley recounts her first sexual tryst); You Know We F**k Right?, Open Future Learning (July 24, 2018), www.facebook.com/open.futurelearning/videos/ 2145920188976176 (Outside Voices Theater Company actors criticize infantilizing perceptions). See Elizabeth Emens, Intimate Discrimination: The State’s Role in Accidents of Sex and Love, 122 Harv. L. Rev. 1307, 1393 (2009). See Natalie Chin, Group Homes as Sex Police and the Role of the Olmstead Integration Mandate, 42 N. Y.U. Rev. L. & Soc. Change 379, 415–16 (2018); Donna J. Bernert, Sexuality and Disability in the Lives of Women with Intellectual Disabilities, 29 Sexuality & Disability 129, 134 (2011). Ben Spiecker & Jan Steutel, Sex Between People with “Mental Retardation:” An Ethical Evaluation, 31 Moral Educ. 155, 162 (2002) (arguing that caregivers should govern persons with intellectual disabilities’ sexual decision-making). Contra Stephen Greenspan, A Sex Police for Adults with “Mental Retardation”? Comment on Spiecker and Steutel, 31 J. Moral Educ. 171, 177 (2002). See, for example, Martin Lyden, Assessment of Sexual Consent Capacity, 25 Sexuality & Disability 3, 16 (2007) (cautioning disability service providers to avoid liability for clients acquiring sexually transmitted diseases). These validations also eerily echo eugenics-era justifications of involuntary sterilization and social isolation. See generally Adam Cohen, Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck (2016). See, for example, The NADSP Code of Ethics, National Alliance for Direct Support Professionals (adopted April 12, 2016), www.nadsp.org/code-of-ethics-text.

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privacy and equality rights of persons with intellectual disabilities. Emerging international human rights norms, however, provide a crucial framework for liberalizing access to voluntary sexual activity. Section I frames the sexual autonomy of persons with disabilities in terms of American constitutional and civil rights-based protections proscribing state interference with intimate relations. It then adumbrates international human rightsbased constructs mandating positive state action to ensure sexual rights. Next, Section II applies Elizabeth Emens’ “architectures of intimacy” conceptual framework for compelling state action to remove barriers to intimate relations for persons with disabilities generally to the specific privacy limitations encountered by persons with intellectual disabilities. Section III then describes human rights-based positivist approaches by some countries to disability-related sexual rights, and considers their implications for Americans with intellectual disabilities. We conclude with brief reflections on how an internationally inspired, positivist human rights approach may ultimately hew more closely to core American freedoms and liberties than existing constitutional right-to-privacy precedents for persons with disabilities. I. PROTECTING DISABLED SEX

Sex is important. As Tom Shakespeare eloquently states, “expressing sexuality freely, having a relationship and forming a family are key ambitions in life, alongside getting a job.”7 Nevertheless, although persons with disabilities fare better statistically in attaining intimacy than in achieving gainful employment,8 these figures belie the pervasive environmental barriers that encumber sexual activity. For one, persons with disabilities do not enjoy the same constitutional protections as other groups. The United States Supreme Court, since Griswold v. Connecticut in 1965,9 has recognized Bill of Rights-based fundamental “zones of privacy” protections to include intimate relations. This negative-rights framework delimiting the zones of state interference has been extended to safeguard the intimate relations of people in other identity categories, including racial minorities and the LGBT community.10 Yet, the Court has not applied Griswold to the sexual activities of persons with disabilities, nor is it likely to do so following the diminished constitutional protection of “rational basis” 7

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Tom Shakespeare, Family and Intimate Relations, in Disability Social Rights (Michael Ashley Stein & Malcolm Langford eds., forthcoming 2020). Emens, supra note 2, at 1326 (reporting that in 2002, 59.6 percent of people with nonsevere disabilities and 50.1 percent of people with severe disabilities were married). In 2017, 29.3 percent of working age (16–64) persons with disabilities were employed. Bureau of Labor Statistics, Persons with a Disability: Labor Force Characteristic – 2017 (June 21, 2018), www.bls.gov/news.release/disabl.nr0.htm. 381 U.S. 479, 484 (1965) (right of unmarried couples to use contraception). See, for example, Loving v. Virginia, 388 U.S. 1 (1967) (right to interracial marriage); Lawrence v. Texas, 539 U.S. 558 (2003) (right to same-sex sexual activity); Obergefell v. Hodges, 576 U.S. 1 (2015) (same-sex marriage).

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review it accorded the intellectual disability identity category in City of Cleburne v. Cleburne Living Center.11 Nor would protection from the kind of overt state interference considered by the Griswold Court, as a practical matter, adequately ensure equal opportunities. Persons with disabilities face extensive, subtle barriers to intimacy either traceable to the state or left intact by state inaction. This holds doubly true for persons with intellectual disabilities living in group residences, who daily experience statesponsored privacy interference. While some lack of privacy may be inherent to communal living, persons with intellectual disabilities face added disruptions by state-funded provider agencies.12 State regulations frequently give residential staff free rein to intrude upon residents’ sexual activity;13 and providers can impose their own rules,14 with some outright prohibiting sexual activity.15 Many agencies force residents to have roommates to cut costs, thereby curtailing a crucial avenue for privacy.16 Many persons with intellectual disabilities lack sufficient privacy to masturbate – they are denied time alone in their bedrooms and, at times, chemical or physical restraints are used to prevent self-stimulation.17 Legally appointed guardians routinely direct providers and caregiving staff to disallow residents from receiving visitors alone in their rooms.18 Even absent direct incursions, persons with intellectual disabilities have to contend with daily staffing and resource constraints, rigid activity planning procedures, and the personal beliefs and compunctions of caregiving staff.19 Furthermore, many policymakers, service providers, guardians, and caregivers have regarded sexual pursuits as beyond the scope of statutory rights protections. Specifically, the “integration mandate” of the Americans with Disabilities Act 11

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City of Cleburne, Texas v. Cleburne Living Center, 473 U.S. 432, 448 (1985). See also Anita Silvers & Michael Ashley Stein, Disability, Equal Protection, and the Supreme Court: Standing at the Crossroads of Progressive and Retrogressive Logic in Constitutional Classification, 35 U. Mich. J.L. Reform 81, 105 (2002) (noting that the Supreme Court essentially authorized states to “engage in broad disability profiling if there is some public purpose for separating out some disabled people for separate treatment”). See Andrea Hollomotz, “May We Please Have Sex Tonight?” – People with Learning Difficulties Pursuing Privacy in Residential Group Settings, 37 Brit. J. Learning Disabilities 91, 93–95 (2008). See, for example, N.Y. Comp. Codes R. & Regs. tit. 14, § 633.4(4)(xvi)(a)&(c) (2017) (Service providers have a right “to reasonably limit the expression of [residents’] sexuality, including time and location thereof, in accordance with a plan for effective facility management.”) See, for example, K.G. v. SRS, 1993 Mont. Dist. LEXIS 468, *8-9. See, for example, Forziano v. Indep. Grp. Home Living Program, Inc., 2014 WL 1277912 (E.D.N.Y. 2014), aff’d, 613 F. App’x 15 (2d Cir. 2015). Some providers require persons with intellectual disabilities to marry before cohabitating. See Bernert, supra note 3, at 135. See Sarah H. Ailey et al., Promoting Sexuality Across the Life Span for Individuals with Intellectual and Developmental Disabilities, 38 Nursing Clinics of No. Am. 229, 231 (2003). See Greenspan, supra note 4, at 177. Cf. Robert D. Dinerstein, Sexual Expression for Adults with Disabilities: The Role of Guardianship, 23 Impact (Spring/Summer 2010), https://ici.umn.edu/products/impact/232/10.html (cautioning guardians not to substitute their judgments about persons with intellectual disabilities’ sexual expression). See Chin, supra note 3, at 382–83.

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(ADA)20 has been effectively applied so as to enable persons with disabilities to have equal claims to community-based living,21 but not to aspects relating to intimacy in community-based settings. To illustrate: By law, service providers operating group residences must guarantee an environment that “optimizes . . . individual initiative, autonomy, and independence in making life choices,” including determinations regarding “with whom to interact.”22 Nevertheless, these same entities generally circumscribe sexual activity by individuals with disabilities living under their control and to whom they owe a legal and ethical duty of support.23 By contrast, international human rights law – prominently the United Nations Convention on the Rights of Persons with Disabilities (CRPD)24 – reflects a positivist approach to sexual rights. The CRPD prohibits disability-based discrimination with regard to “parenthood and relationships” and also obliges states to provide persons with disabilities “the means necessary” to exercise their sexual rights.25 Regrettably, limbic taboos about disability and sexuality26 combined with ideological objections to the reproductive rights of Americans with disabilities ultimately helped block Senate ratification of the CRPD.27 Certainly, persons with disabilities are not abstaining until they receive permission from the Court or Congress.28 Rather, they continue to combat the exceptional attitudinal barriers that impede their sexual intimacy. These ongoing efforts implicate the inefficacy of existing United States constitutional and statutory rights protections as vehicles for ensuring persons with disabilities’ equal sexual agency. More broadly, these struggles raise substantive concerns about the conditions put on persons with disabilities’ access to and participation in the community.29 We discuss 20 21

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42 U.S.C. §§ 12101 et seq. (1994). See Olmstead v. L.C., 527 U.S. 581, 587 (1999) (recognizing the right to live in the least restrictive setting); see generally Samuel Bagenstos, The Past and Future of Deinstitutionalization Litigation, 34 Cardozo L. Rev. 1 (2012) (describing the advocacy shift of deinstitutionalization from constitutional due process theories to the ADA’s statutory antidiscrimination theory). Moreover, the Rehabilitation Act prohibits recipients of federal funding from discriminating against persons with disabilities. 29 U.S.C. § 794 (1976); see also Chin, supra note 3, at 420–21 (discussing precedent on Section 504’s application to disability service providers administering federal funds). 42 C.F.R. § 441.530(a)(1)(iv) (2014). See, for example, Ailey, et al., supra note 16, at 249. United Nations Convention on the Rights of Persons with Disabilities (CRPD), art. 23, Dec. 13, 2006, 999 U.N.T.S. 3 (opened for signature on March 30, 2007; entered into force on May 3, 2008). See generally Marta Schaaf, Negotiating Sexuality in the Convention on the Rights of Persons with Disabilities, 14 Sur (January 2011), http://sur.conectas.org/en/negotiating-sexuality-convention-rightspersons-disabilities (discussing history). Anna Mollow & Robert McRuer, Introduction, in Sex and Disability 1, 1 (Robert McRuer & Anna Mollow eds., 2012) (“Pity or fear, in other words, are the sensations most associated with disabilities.”) Thomas D. Grant, The U.N. Convention on the Rights of Persons with Disabilities (CRPD): Some Observations on U.S. Participation, 25 Ind. Int’l & Comp. L. Rev. 171, 184–93 (2015) (discussing US ratification opponents’ reproductive health-related objections). See Michael Gill, Already Doing It: Intellectual Disability and Sexual Agency (2015). Jacbous tenBroek’s classic framing readily applies to the implications of persons with intellectual disabilities’ inclusion in the community for their sex lives: what are the conditions, if any, on their

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these questions while emphasizing the specific and heightened barriers faced by persons with intellectual disabilities. II. RETROFITTING THE ARCHITECTURES OF INTIMACY

It may be tempting to attribute persons with disabilities’ disparate access to sex wholly to personal preferences. Indeed, sexual stereotypes about persons with disabilities abound, ranging from the belief that they are asexual, to sexually passive and vulnerable, to oversexed and sexually aggressive. Sex education provided to young adults with disabilities, for example, is often inadequate because instructors assume that the students “would not have sexual relationships,” and that supplying “too much information about sexual activity would be frustrating and damaging.”30 Such detrimental stereotypes reinforce disability as appropriately justifying exclusion from the intimate realm.31 The extent and efficacy of states combatting social conventions that preclude opportunities for particular groups is open to debate and the subject of a burgeoning academic literature relating to the efficacy of the expressive dynamic of law.32 Notably, the CRPD contains precisely such a positive obligation in Article 8 by requiring states to combat negative stereotypes and promote positive imagery.33 One could certainly imagine state-sponsored efforts to influence citizens’ personal feelings and thoughts about persons with disabilities generally as inuring to social conventions regarding the realm of sexuality. Conversely, enforcing an obligation reflected in an early (readily quashed) CRPD draft article compelling states to ensure persons with disabilities “the right to sexuality and to form intimate relationships with others”34 likely exceeds current boundaries of international human rights obligations, and raises complicated bioethical issues. (However, as we will see below, some states do provide such services to particular citizens with disabilities.35) Elizabeth Emens proposes a thoughtful middle ground that begins to bridge the type of negative rights expressed through American civil rights laws with the more

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sexual autonomy? See The Right to Live in the World: The Disabled in the Law of Torts, 54 Cal. L. Rev. 841, 863 (1966). Mhairi McAlpine, Disability and the Sex Industry, Second Council House of Virgo (February 2013) www.2ndcouncilhouse.co.uk/blog/2013/02/02/disability-and-the-sex-industry (last visited November 6, 2018). Emens, supra note 2, at 1381. See, for example, Alex Geisinger & Michael Ashley Stein, A Theory of Expressive International Law, 60 Vand. L. Rev. 77, 107–09 (2007) (applying expressive law analysis to disability rights advocates’ successful efforts at influencing the Hungarian government’s normative beliefs). See also generally Richard McAdams, The Expressive Powers of Law (2015). CRPD, supra note 24, at art. 8. See Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights of Dignity of Persons with Disabilities, art. 16(1), UN Enable, (December 2003), www.un.org/esa/socdev/enable/rights/wgcontrib-chair1.htm (“Persons with disabilities have the right to sexuality and to form intimate relationships with others.”) See discussion infra, at Section III.

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expansive scope of positive rights in international human rights law.36 She asserts that conscious law and policy choices constitute the architectures of intimacy that either facilitate or obstruct the sexual relationships of persons with disabilities. Hence, the state’s acquiescent hand in creating these barriers triggers a consequent obligation to remove them, even where the barriers are invisible or indirectly affect persons with disabilities’ sex lives. For instance, while the ADA clearly prohibits segregating partners of those with disabilities into separate eating areas in public accommodations, it does not mandate access to private homes, thereby allowing builders and developers to create architectonic barriers to the spaces where social and intimate relations typically flourish. Consequently, a person with a disability might easily dine out with a partner, but effectively be barred from socializing in the partner’s home. Crucially, these choices reveal the state’s complicity in allowing the ADA’s integration mandate to stop at private doorways, perhaps even displaying how desexualized disability tropes become reified in laws and policies that purport to safeguard persons with disabilities’ rights. In much the same vein, states condone selective interventions in the sex lives of persons with intellectual disabilities living in group homes. For example, state regulators impose robust mechanisms and fund programming for preventing sexual abuse and exploitation (that in practice stymie sexual activity), yet rarely require providers to adopt policies and protocols to facilitate residents’ sex lives. Such readiness to regulate persons with intellectual disabilities’ sex lives in order to prevent abuse, but not to promote desired activity, exemplifies a conscious law and policy choice at the foundation of Emens’ architectures of intimacy. By doing so, states engage in the kind of paternalistic substitution of agency that the disability rights movement has long struggled against. Strikingly, these states are emulating the example set by the Supreme Court, most recently in Chevron U.S.A., Inc. v. Echazabal.37 There, the Court interpreted the ADA to allow an oil refinery operator to reject a job applicant with Hepatitis C due to the allegedly greater health risks of his on-site exposure to toxins relative to nondisabled employees.38 Because the Court previously vindicated female workers’ right to accept work-related health risks in a directly analogous situation,39 Echazabal actually validated “the kind of workplace paternalism the ADA was meant to outlaw.”40 Similar paternalistic currents have thwarted persons with intellectual disabilities’ assertion of equality rights in other Supreme Court cases. Among them: City of Cleburne, Youngberg v. Romeo, and Olmstead v. L.C., wherein the Court delimited the constitutional and 36 37 38

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See generally Emens, supra note 2. 536 U.S. 73 (2002). Id. at 76. This was despite the applicant having been exposed to precisely the same risks as a part-time worker for decades, the refinery’s trepidations arising only in the context of a full-time job that carried healthcare benefits, and the contested medical evidence of increased health risks. Id. at 77, 84. UAW v. Johnson Controls, Inc., 499 U.S. 187 (1991). Anita Silvers et al., Disability and Employment Discrimination at the Rehnquist Court, 75 Miss. L.J. 945, 972 (2006).

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statutory equality rights of persons with intellectual disabilities per the opinions of “professionals.”41 As in Echazabal, professional risk assessments superseded persons with intellectual disabilities’ own tolerance levels for risks inherent to community inclusion. Certainly, concerns by professionals about preventing abuse may warrant measures to promote the safe exercise of privacy rights for some persons with intellectual disabilities. However, capacity-based sex restrictions are invasive,42 conducted by biased individuals,43 and purposefully designed to generate low pass rates as a hedge against legal liability.44 Even in group settings that do not categorically foreclose sex, professional oversight of persons with intellectual disabilities’ sexual activity constitutes “a terrible invasion of privacy.”45 Moreover, service providers have yet to demonstrate that substituting persons with intellectual disabilities’ sexual agency with their own professional judgment promotes safety and prevents abuse. Rather, it is simply presumed that less sex is better for persons with intellectual disabilities. Ironically, restrictions on volitional sexual activity may have the opposite effect. Empirical evidence suggests that abusers are more frequently the caregiver staff and service providers who enforce restrictions rather than unidentified peers or strangers.46 Indeed, research suggests that preventing individuals with intellectual disabilities from accessing opportunities for sexual education and experience results in deficits in sexual knowledge that correlate with increased risk for sexual abuse, deleterious sexual health outcomes, unplanned pregnancies, and negative feelings about sex.47 Moreover, sexual education programs frequently focus on anatomy or risk avoidance “rather than ways to enhance decision-making skills, to interrogate 41

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See City of Cleburne, 473 U.S. at 443–44 (declining to hold that persons with intellectual disabilities constitute a quasi-suspect class because “how this large and diversified group is to be treated under the law is a difficult and often a technical matter, very much a task for legislators guided by qualified professionals and not by the perhaps ill-informed opinions of the judiciary”); Youngberg v. Romeo, 457 U.S. 307, 323 (1982) (finding “no reason to think judges or juries are better qualified than appropriate professionals in making such decisions” regarding the appropriateness of involuntary commitments); Olmstead, 527 U.S. at 607 (requiring state authorities “to provide community-based treatment for persons with mental disabilities [only] when the State’s treatment professionals determine that such placement is appropriate”). See Marissa DeBellis, Note, A Group Home Exclusively for Married Couples with Developmental Disabilities: A Natural Next-Step, 28 Touro L. Rev. 451, 465 (2012). See id. at 467 (evaluators are often employed by providers or associated closely with them). See id. at 464. K.G. v. SRS, 1993 Mont. Dist. LEXIS 468 at *34. Ironically, the same court found that Griswold did not guarantee intellectually disabled group home residents’ right to sexual activity. Id. at *31. Chin describes one New York-based provider’s good practices, see supra note 3, at 446, even though it relies on gatekeeper capacity to consent assessments subject to the vagaries described by DeBellis, see supra note 42, at 464–68. One study found that 37.5 percent of sexual abusers held supervisory positions related directly to the victim’s disability, and that overall, disability service providers comprised 27.7 percent of perpetrators. Dick Sobsey & Tanis Doe, Patterns of Sexual Abuse and Assault, 9 Sexuality & Disability 243, 247 (1991). See Amanda Saxe & Tara Flanagan, Unprepared: An Appeal for Sex Education Training for Support Workers of Adults with Developmental Disabilities, 34 Sexuality & Disability 443, 444 (2016) (“When

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gender and ableist norms, or to experience pleasure.”48 Without meaningful opportunities to form healthy, caring, sexually active relationships, persons with intellectual disabilities might seek to satisfy naturally occurring sexual urges through encounters that can be either exploitative or painful.49 At the same time, abusive relationships can be avoided by affirmative, trusting conversations about sex.50 Within a system where currently “care-providers for people with [intellectual disabilities] are often uncomfortable and therefore unlikely to support social situations that might lead to the development of a sexual relationship,”51 caregivers, states, and service providers alike should discuss sex with persons with intellectual disabilities early and often as part of their core responsibilities.52 Absent this discussion, restricting sexual activity and limiting sex education may be counterproductive, making persons with intellectual disabilities less capable of avoiding sexual abuse. By creating “a culture of obeisance and compliance” filled with “many different caretakers” and “a lack of sex education,”53 paternalistic state regulators and service providers build architectures of intimacy that strip persons with intellectual disabilities of opportunities to make and learn from decisions about their sexuality, thereby increasing their likelihood of abuse. III. TOWARDS STATE SUPPORT FOR SEXUAL AGENCY

Whether due to domestic civil rights laws or international human rights instruments, countries may not affirmatively prevent persons with disabilities from volitional sexual activity. Conversely, some states exceed current understandings of CRPD obligations and affirmatively provide sexual services to their citizens with disabilities. In between those poles lies a range of state, private, and state–private schemes. We detail some prominent national level best practices and touch on several ethical challenges that they raise. In navigating invisible architectures of intimacy, persons with disabilities have entered into formalized relationships with sex workers,54 sex surrogates, and sex

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individuals are deprived access to sexual education, they are subsequently deprived of important knowledge that can keep them safe and healthy.”); see also Joseph Shapiro, For Some with Intellectual Disabilities, Ending Abuse Starts with Sex Ed, National Public Radio (January 9, 2018), www.npr.org /2018/01/09/572929725/for-some-with-intellectual-disabilities-ending-abuse-starts-with-sex-ed. Joseph F. Fischell & Hilary R. O’Connell, Disabling Consent, or Reconstructing Sexual Autonomy, 30 Colum. J. Gender & L. 428, 510–11 (2016); see also Ailey et al., supra note 16, at 232. Don Kulick & Jans Rydstro¨m, Loneliness and its Opposite: Sex, Disability, and the Ethics of Engagement 162 (relating a woman’s painful sexual experiences with a partner stemming from her failure to realize that she was engaging in anal rather than vaginal sex). Id. at 162–63. J. Paul Federoff & Deborah Richards, Innovative Approaches to Ethical Issues in the Care of People with Intellectual Disabilities and Potentially Problematic Sexual Behaviours, 7 J. Ethics in Mental Health 1, 5 (2012). See Joke M. T. Stoffelen et al., Sexuality and Individual Support Plans for People with Intellectual Disabilities, 61 J. Intellectual Disability Research 1117, 1125 (2017). Ailey et al., supra note 16, at 243. Concerns regarding the propriety of sex work can easily overshadow persons with disabilities’ equal access concerns. See, for example, Dane fights for State-funded Sex, BBC News, October 5, 2005, news

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therapists to develop their sexual potential. In Australia, for example, where prostitution is not banned outright, disability rights groups have partnered with sex workers to legitimize and facilitate access to sex industry services for people with disabilities. These schemes are funded by mainstream health and disability organizations such as Family Planning Association, Cerebral Palsy Alliance, and People with Disability Australia.55 Touching Base Inc. offers courses to educate service providers on addressing barriers and making referrals when helping a person with a disability to connect with sex workers and therapists,56 and also issues guidelines for disability services providers.57 Although a private initiative, Touching Base Inc. enjoys tacit state endorsement, if not outright support. For example, the extensive guidelines begin with a foreword by the Disability and Race Discrimination Commissioner for the Australian Human Rights Commission, referencing New South Wales’s best practice model of decriminalizing the sex industry and urging the continued improvement of “community attitudes” toward the sexualities of people with disability.58 Denmark’s government demonstrates an even greater positive-rights approach to operationalizing the rights of people with disabilities to sexual expression. The state sponsors “sexual facilitation,” which includes assisting persons with disabilities to visit sex workers.59 Like Australia, Denmark has a set of guidelines regarding sexuality and disability.60 Government-issued, Denmark’s directives enable staff to help persons with disabilities engage in sex without the staff’s own participation.61 Moreover, staff may be trained as “sexual advisors” to develop specific “plans of action” (for positioning sex aids, for example), as well as lead discussion groups and role play scenarios about sexuality.62 Thus, in Denmark, the state has adopted and encouraged many affirmative measures to enable persons with disabilities’ sexual self-actualization. Despite an elaborate social service delivery system, rights-based arguments in favor of sexual facilitation remain aspirational at best within the United States’ negative-rights

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.bbc.co.uk/2/hi/4309012.stm (questioning a Danish congressperson’s framing in moral terms the suit of a man with disability seeking state funds for a sex worker to visit him rather than vice versa). See Small Beginnings, Touching Base Inc, www.touchingbase.org/about-us/history/small-beginnings (last visited November 6, 2018). See Stories, Touching Base Inc, www.touchingbase.org/clients/clients-stories (last visited November 6, 2018); see also Scarlet Road (Paradigm Pictures 2011), www.scarletroad.com.au/trailer (chronicling an Australian sex worker’s experiences with clients with disabilities). See Touching Base Inc, Policy and Procedural Guide for Disability Service Providers Supporting Clients to Access Sex Services (2011). Id. See also generally Rachel Wotton, Sex Workers who Provide Services to Clients with Disability in New South Wales, Australia (September 2016) (unpublished PhD dissertation, University of Sydney), https://ses.library.usyd.edu.au/bitstream/2123/16875/1/Wotton_RW_thesis.pdf. See Katharine Quarmby, Sex, Lives and Disability: What Can Disabled Bodies Teach us about Sex, and Why We Should Listen?, Mosaic Science (March 2015), https://mosaicscience.com/story/sexdisability (last visited November 6, 2018). Kulick & Rydstro¨m, supra note 48 at 66–68. Id. at 107. Id.

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and antidiscrimination statutory framework.63 As a result, service providers administering federal funds destined to increase the independence and community inclusion of persons with disabilities are largely immune from legal responsibility for inaction. Only a small fraction of the services provided via federal funds to clients with disabilities are used to provide sexuality-related services.64 Moreover, the vast majority of these focus on preventing abuse rather than delivering sex-positive services.65 This allows ample room for staff to rely on their personal beliefs and attitudes about “appropriate” sexual behavior for persons with intellectual disabilities, often leading them to limit consensual and fulfilling sexual activity.66 Similarly, despite service professionals’ ethical duty to ensure “that people have the opportunity to make informed choices in safely expressing their sexuality,”67 they frequently broach the topic of sexuality with clients only if they exhibit “problematic” sexual behaviors, and with the goal of preventing those behaviors.68 Thus, absent a positive formulation of sexual rights in statutes or regulations modeled on the CRPD or progressive domestic jurisdictions, Americans with intellectual disabilities are unlikely to succeed at compelling access to services that might promote sexual agency. Ultimately, the continued exclusion of Americans with intellectual disabilities from sexual expression undermines their claims on full agency as citizens.69 Growing opportunities to live within the community conceivably have afforded persons with intellectual disabilities more chances to create and maintain intimate relationships.70 However, the concomitant legal right to intimacy in community settings remains woefully underprotected. Thus, the Department of Justice has applied the ADA’s integration mandate to compel replacing state-sponsored segregated work programs for persons with intellectual disabilities with competitive integrated employment schemes,71 but it has not yet done so with regard to state 63

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See, for example, K.G. v. SRS, 1993 Mont. Dist. LEXIS 468 at *31 (opining that the constitutional right of privacy requires neither a state nor a group home operator “to make special arrangements for the residents to engage in [sexual] activity”). Carli Friedman & Aleksa L. Owen, Sexual Health in the Community: Services for People with Intellectual and Developmental Disabilities, 10 Disability & Health J. 387, 389 (2017) (less than 12 percent of the 111 Medicaid waivers for people with intellectual disabilities provide any type of sexuality-related service). Id. (92 percent of Medicaid services aimed at preventing and stopping inappropriate behaviors, while 8 percent emphasized education and awareness). See Bernert, supra note 3, at 134–35. The NADSP Code of Ethics, National Alliance for Direct Support Professionals (adopted April 12, 2016), www.nadsp.org/code-of-ethics-text. See Vanessa R. Thompson et al., Barriers to Sexual Health Provision for People with Intellectual Disability: A Disability Service Provider and Clinician Perspective, 39 J. Intellectual & Developmental Disability 137, 144 (2014). Cf. Michael Ashley Stein, Disability Human Rights, 95 Calif. L. Rev. 75, 100, 103 (2007) (criticizing Martha Nussbaum’s “capabilities” approach for excluding certain individuals with intellectual disabilities). What Emens calls “the accidents of sex and love.” See supra note 2, at 1311. Olmstead Enforcement: U.S. v. Rhode Island – 1:14-cv-00175 – (D.R.I. 2014), U.S. Dep’t of Justice, www .ada.gov/olmstead/olmstead_cases_list2.htm (last visited December 16, 2018); Olmstead Enforcement:

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regulation of their sex lives. Moreover, the prospects of future progressive enforcement of the ADA depend on shifting political winds.72 Absent overriding legal obligations to promote sexual agency, it is doubtful whether liability-shy state regulators and service providers can be convinced to reconceive of sexual activity as a core component of federally-funded service delivery programs, especially amid resource scarcity.73 Similarly, absent affirmative sexual rights, it is indeterminate for how long health and safety risks will continue to afford states a “rational basis” for using their professional judgment to restrict sexual agency for persons with intellectual disabilities. IV. CONCLUSION

Around the world, adults with both intellectual and other kinds of disabilities have “expressed a clear and unequivocal desire to develop intimate relationships with significant others.”74 The CRPD recognizes and mandates this right. Yet, currently, the sexual rights of Americans with intellectual disabilities that might exist in the penumbra of constitutional and statutory liberty and antidiscrimination protections are illusory at best. While other identity groups have effectively availed the United States’ negative-rights framework to safeguard their sexual rights, and despite precedents holding some promise for persons with disabilities, it is unclear how effectively these frameworks can remove the invisible barriers to architectures of intimacy, especially given the history of paternalistic applications of existing legal provisions.

72

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Lane v. Brown – 12-CV-00138 – (D. Or. 2012), U.S. Dep’t of Justice, www.ada.gov/olmstead/olmstead_ cases_list2.htm (last visited December 16, 2018). In 2017, the Department of Justice withdrew its guidance interpreting the ADA to require competitive integrated employment schemes instead of sheltered workshops. Withdrawal of the Statement of the Department of Justice on Application of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C. to State and Local Governments’ Employment Service Systems for Individuals with Disabilities, U.S. Dept. of Justice (December 21, 2017), www.ada.gov/withdraw n_olmstead.html. The underlying statute is also under attack. See ADA Education and Reform Act of 2017, H.R. 620, 115th Cong. (2018), www.congress.gov/bill/115th-congress/house-bill/620 (threatening to bar public accommodation suits unless the person with disability provides prior written notice to an owner or operator and they fail to reply with a written plan for removing the barrier). See Michael Ashley Stein, Same Struggle, Different Difference: ADA Accommodations as Antidiscrimination, 153 U. Pa. L. Rev. 579, 632–33 (2004) (“to conserve scarce financial resources” the Court has interpreted rational basis scrutiny to permit unquestionably discriminatory practices against persons with disabilities). See also generally Michael E. Waterstone, The Costs of Easy Victory, 57 Wm. & Mary L. Rev. 587, 608–10 (2015) (arguing that congressional debate on the ADA centered on the costs of recognizing disability rights, not a moral imperative to do so). Simon Foley, The UN Convention on the Rights of Persons with Disabilities: A Paradigm Shift in the Sexual Empowerment of Adults with Down Syndrome or More Sound and Fury Signifying Nothing?, 30 Sexuality & Disability 381, 386 (2012) (quoting Carol Anne Hamilton, “Now I’d like to Sleep with Rachael” – Researching Sexuality Support in a Service Agency Group Home, 24 Disability & Soc. 303 (2009)); see also I’m Supervised When I Do the No-No, Self-Advocacy Association of New York State 15:05 (2006), www.youtube.com/watch?v=Y13d0GrKThE&t=456s (self-advocate Harvey Pacht discusses his experiences marrying his wife and raising their daughter).

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Regardless of modality – whether by more expansively holding states accountable for their complicity in constructing inaccessible architectures of intimacy; by advocating for increasing the availability of sexuality-related services; or by drastically retooling consent capacity evaluation practices – there is a human rights imperative to ensure that full community inclusion for persons with intellectual disabilities includes sex as a fundamental activity of daily living. Without a sex-positive and rights-based approach, Americans with intellectual disabilities’ right to community living will remain hollow, their “zones of privacy” beyond the aegis of constitutional protections, and their sexual agency conditioned on well-intentioned professionals’ tolerance for the risks inherent to full and meaningful inclusion in society.

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Introduction to Part V Carmel Shachar

“What we owe to each other” is a question that consumed the philosopher T. M. Scanlon,1 and more recently has been the focus of the popular sitcom The Good Place. This question can be framed very broadly: how does each individual in society interact with everyone else? This question can also be the launching point for a narrower inquiry: in light of unique circumstances, what does society owe its members, such as disabled individuals? Even more specifically, how do we translate what is “owed” disabled individuals into a regulatory regime that can carry out these obligations? The question of what is owed is especially important when considering our legal system because, generally, to provide an individual with a right means to impose an obligation on another actor. Thus, considering what is owed to people with disabilities is also to consider what rights they have or ought to have. Each of the chapters in this part wrestles with similar variations on the theme of what is owed to each other. Some of the chapters look at the underlying assumptions that power existing obligations, such as when Craig Konnoth looks at the paradigms that have driven successive waves of disability rights legislation in Chapter 15, “The Normative Bases of Medical Civil Rights,” and when Medha D. Makhlouf considers the assumptions around disability that have informed American immigration law in Chapter 14, “Destigmatizing Disability in the Law of Immigration Admissions.” Some chapters also consider what is owed by society to individuals with disabilities, such as when Wendy Salkin considers the challenges of providing judicial representation to individuals with severe intellectual disabilities in Chapter 16, “Judicial Representation: Speaking for Others from the Bench,” and when Makhlouf considers whether American citizens with disabilities are owed an improvement in the way that immigration law treats immigrants with disabilities. In Medha Makhlouf’s “Destigmatizing Disability in the Law of Immigration Admissions,” we explore what we owe people with disabilities seeking to immigrate to the United States. Makhlouf discusses the current structure of American immigration law, which frames disability as a “bad difference” by connecting it with 1

T. M. Scanlon, What We Owe to Each Other (1998).

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underemployment and the use of social welfare programs. Immigration law as it currently stands suggests that we owe people with disabilities very little as they seek to enter the United States. Makhlouf argues that this stigmatizing view is flawed and that we owe people with disability the application of disability as a “mere difference” in immigration. This would be fairer not only to those seeking to immigrate but also to American citizens with disabilities, who are owed a society that challenges the cultural and legal norms presupposing that disability is inherently negative or undesirable. Craig Konnoth’s “The Normative Bases of Medical Civil Rights” attempts to answer “what we owe to each other” by tracing the different paradigms that drive disability civil rights, reinforcing the connection between rights and obligations. He argues that each paradigm results in a different scope of rights. Disability was originally framed as the result of brute bad luck. When it was bad luck driving a situation, and not the result of individual decisions, he argues, policymakers often agreed that individuals were owed resources, such as social security and Medicare. Disability was later framed as socially constructed, meaning that individuals were owed legal protections against discrimination, expressed through legislation such as the Americans with Disabilities Act and the Rehabilitation Act. The paradigms have not fully displaced a historical understanding of disability as individual fault. This limits what society feels is owed to people with disbailities. Wendy Salkin closes this part with “Judicial Representation: Speaking for Others from the Bench,” in which she investigates what is owed through representation. She focuses on the importance of judicial representation – recognizing yourself or a group with which you identify with in the person sitting on the bench. Salkin acknowledges that some groups, such as those with severe intellectual disabilities, may never achieve judicial appointments. Nevertheless, she argues that the courts owe judicial representation to these groups by pursuing an understanding of the reality of these individuals’ lives and circumstances. While this method of judicial representation may be more complicated than the more straightforward solution of appointing members of a politically disempowered group to the bench, it has the potential to fulfill some of the obligations of the judicial system when there is no appropriate judicial candidate from that group. Read together, the chapters in this part bring nuance to the question of what we owe each other in the context of disability. The authors illustrate how framing disability results in different social and legal obligations to people with disabilities, also shaping the rights they are able to exercise.

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14 Destigmatizing Disability in the Law of Immigration Admissions Medha D. Makhlouf

Ever since the federal government began comprehensively regulating immigration in the late nineteenth century, noncitizens with traits associated with disability have faced more legal barriers to immigration than noncitizens without disabilities.1 Federal laws excluding noncitizens on the basis of vague, health-related criteria have existed since 1882.2 In the early twentieth century, the US Public Health Service instructed medical inspectors to search for evidence of conditions such as bunions, flat feet, hernia, hysteria, poor eyesight, psychoses of various kinds, spinal curvature, and varicose veins.3 It is not an overstatement to say that the exclusion of people with disabilities was a pillar of early immigration policy.4 The motivations behind such laws at the turn of the century were clear: first, fear of disability itself was pervasive; and second, there were concerns about increasing hereditary disability within the population. The latter concern was in line with the ideology of eugenics, which profoundly influenced the evolution of early immigration restrictions.5 Labor policy characterizing noncitizens with disabilities as undesirable workers also supported disability-related immigration restrictions. Although these laws have been relaxed over time, noncitizens with a variety of disabilities are still considered inadmissible on account of their health status. These disfavored disabilities include certain communicable diseases, physical or mental health disorders that may cause harmful behaviors, substance dependence or abuse disorder, and any other condition that prevents participation in the labor force and the ability to provide for oneself. 1

2

3

4

5

See Mark C. Weber, Opening the Golden Door: Disability and the Law of Immigration, 8 J. Gender Race & Just. 153, 155 (2004). Act of August 3, 1882, ch. 376, 22 Stat. 214, 214 (denying entry to “any convict, lunatic, idiot, or any person unable to take care of himself or herself without becoming a public charge”). U.S. Pub. Health Serv., Regulations Governing the Medical Inspection of Aliens 16–19 (1917), available at archive.org/details/regulationsgove00servgoog. See Douglas C. Baynton, Defectives in the Land: Disability and American Immigration Policy, 1882–1924, 24 J. Am. Ethnic Hist. 31, 34 (2005). See, for example, id. at 32; Weber, supra note 1, at 157–60. See generally John Higham, Strangers in the Land: Patterns of American Nativism, 1860–1925, at 149–57, 273–77 (2nd ed. 2002).

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One of the goals of Disability Legal Studies (DLS) is to challenge existing hierarchies that exclude or marginalize people with disabilities.6 DLS espouses the “social model of disability,” which looks beyond medical criteria to view disability as “the result of socio-cultural dynamics that occur in interactions between society and people with disabilities.”7 While acknowledging that disability can limit a person’s capacity to do things that most people take for granted, this position maintains that people with disabilities are “limited more by social attitudes and environmental barriers than by any inherent ‘defect’ or ‘deficiency’ within the person.”8 An important purpose of adopting the social model of disability was to characterize disability in a way that enhances advocacy for social change. Among those whose views of disability fall within the social model, there is a split in the characterization of disability as a “mere difference” from the norm versus a “bad difference.” The mere difference position maintains that “disability is not, by itself, something bad, harmful, or suboptimal.”9 On the other side is the view that having a disability always makes a person worse off than she would have been had she been nondisabled, even if society has done everything possible to accommodate her disability. Disability-related immigration exclusions are manifestations of a bad difference viewpoint because they portray people with disabilities as “undesirable” entrants who threaten citizens in various ways.10 Viewed least charitably, the exclusions reflect an opinion of “people with disabilities as useless, marginal, abnormal, [and] a burden on society.”11 Such harsh conclusions about the value of people with disabilities go far beyond the assessment that society will never be able to fully accommodate disability. Of course, sovereign nations have the right to construct their citizenry, and that includes creating guidelines for the admission of noncitizens and status-based criteria for entitlements.12 We justify laws that exclude disabled noncitizens from entering or immigrating to this country by pointing to their noncitizen status, not their disablement. Some might argue that it is common sense to prefer a healthy and able-bodied citizenry to one that is ill or disabled. That “common sense,” however, reveals a blanket judgment about the inferiority of noncitizens with disabilities relative to noncitizens without disabilities. Fundamentally, immigration and citizenship laws reflect societal norms about the types of people who will benefit the community of citizens.13 Exclusion directed 6

7 8 9

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See Arlene S. Kanter, The Law: What’s Disability Studies Got to Do with it or an Introduction to Disability Legal Studies, 42 Colum. Hum. Rts. L. Rev. 403, 415 (2011). Id. at 407. Id. at 409. See also Elizabeth Barnes, Valuing Disability, Causing Disability, 125 Ethics 88, 93 (2014). Barnes, supra note 8, at 89. Proponents of this view do acknowledge that there are some features or aspects of disability that “involve the loss of intrinsic goods or basic capabilities.” Id. at 90. See, for example, Baynton, supra note 4, at 32; Polly J. Price, Infecting the Body Politic: Observations on Health Security and the “Undesirable” Immigrant, 63 U. Kan. L. Rev. 917, 918 (2015). Sagit Mor, Between Charity, Welfare, and Warfare: A Disability Legal Studies Analysis of Privilege and Neglect in Israeli Disability Policy, 18 Yale J.L. & Human. 63, 69 (2006). See, for example, Price, supra note 10, at 920. See Kit Johnson, Theories of Immigration Law, 46 Ariz. St. L.J. 1211, 1249 (2014).

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toward noncitizens with disabilities is related to the exclusion of citizens with disabilities in that it reflects the value society places on people with disabilities more generally. These exclusionary laws reinforce cultural norms that brand people with disabilities as inferior.14 The barriers – physical and attitudinal – that disabled citizens face will never be adequately addressed if we continue to exclude disabled noncitizens in the hopes of having a disability-free citizenry, rather than “accommodat[ing] disability into our culture.”15 For this reason, those who care about the welfare of disabled people living in the United States should be concerned with challenging the cultural and legal norms that have resulted in the exclusion of noncitizens with disabilities. This chapter provides an overview of immigration exclusions that impact the ability of noncitizens with disabilities to enter and immigrate to the United States. It then describes what the law of immigration admissions might look like if it were to treat disability as a mere difference rather than a bad difference. I propose that a mere difference view in the immigration context must do more than merely treat disability as a neutral factor; rather, it must recognize the value of a citizenry that includes people with disabilities. I. LEGAL FRAMEWORK OF DISABILITY-RELATED IMMIGRATION EXCLUSIONS

In order to enter the United States, noncitizens must meet certain criteria that are determined by the classification through which they seek to enter. Even if a noncitizen meets the eligibility criteria, the federal government may exclude him from entry if any of the grounds of inadmissibility apply to him. An examination of whether a noncitizen seeking to enter on a visa is excludable under these grounds happens twice: first by a Department of State (DOS) consular officer during the visa application process, and second by a Department of Homeland Security (DHS) immigration official upon arrival at a port of entry. The grounds of inadmissibility also apply to noncitizens who are seeking lawful permanent resident status, even if they have lived in the United States for many years. Sometimes, admissibility becomes an issue for lawful permanent residents who are applying to become US citizens. If any ground of inadmissibility applied but was overlooked at the time the applicant became a lawful permanent resident, she may be denied citizenship and is subject to deportation. The grounds of inadmissibility are grouped into ten categories, two of which I describe as “disability related.” The health-related exclusions are based on public 14

15

Kevin Johnson makes a similar argument regarding racial minority groups that are marginalized in immigration law. Kevin Johnson, Race, the Immigration Laws, and Domestic Race Relations: A “Magic Mirror” into the Heart of Darkness, 73 Ind. L.J. 1111, 1153 (1998). Barnes, supra note 8, at 112 (quoting Laura Hershey, From Poster Child to Protestor, Crip Commentary (1993), cripcommentary.com/frompost.html).

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health concerns and include a variety of communicable and noncommunicable conditions. The public charge exclusion guards against noncitizens who would become dependent on government assistance for any reason and is often applied to applicants with disabilities. A. History of Disability As a Barrier to Immigration The first comprehensive federal immigration law, passed in 1882, excluded any “lunatic, idiot, or any person unable to take care of himself or herself without becoming a public charge.”16 In the terminology of the time, this meant that any person determined to be mentally ill or intellectually disabled was automatically excluded. It was assumed that people categorized as such would be unable to support themselves through work and would become a burden on taxpayers. The inclusion of the more general “public charge” provision with these categories is an indication of its longstanding link to the exclusion of noncitizens based on perceived health-related grounds. In practice, the provision applied to individuals with a broad range of disabilities, and medical inspectors had wide discretion to apply it as they saw fit.17 In 1891, the exclusion broadened from applying to those who were “unable” to provide for themselves, to those who were “likely to become a public charge.”18 In 1907, the law was amended again to require a medical certificate for those determined to be “mentally or physically defective, such mental or physical defect being of a nature which may affect the ability of such alien to earn a living.”19 Essentially, this provision required disabled noncitizens to meet a higher standard than noncitizens without disabilities in order to avoid exclusion under the public charge ground. Although the rationale for excluding noncitizens with disabilities in the immigration context seemed to be related to cost concerns, historians have maintained that these were secondary to uneasiness about introducing “degenerate breeding stock” into the populace.20 From 1903 to 1917, as the eugenics movement gained influence, several additional categories of “mental defect” were added to the exclusion.21 Likewise, noncitizens with physical disabilities or simply an “abnormal appearance” were excluded without regard to their history of self-support.22 16 17

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Act of August 3, 1882, Pub. L. No. 47–376, § 2, 22 Stat. 214, 214. Baynton, supra note 4, at 33; Mark C. Weber, Immigration and Disability in the United States and Canada, 32 2 Windsor Y.B. Access to Just., 22 (2015). Baynton, supra note 4, at 33. Id. (emphasis in original) (quoting 34 Stat. 898, 899 (1907) (emphasis added)). Higham, supra note 5, at 151. Baynton, supra note 4, at 33–34 (citing 32 Stat. 1213 (1903); 34 Stat. 898 (1907); and U.S. Public Health Serv., supra note 3, at 25–26, 28–29, 30–31 (1917)). See, for example, United States ex rel. Barlin v. Rodgers, 191 F. 970 (3d Cir. 1911); United States ex rel. Canfora v. Williams, 186 F. 354 (S.D.N.Y. 1911); Baynton, supra note 4, at 31, 36–39 (describing cases in which noncitizens with proven ability to support themselves were nevertheless denied admission on account of physical disabilities).

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From 1921 to 1965, immigration admissions were primarily determined by a quota system based on national origin that favored citizens of western and northern European countries.23 Advocates for the quota system claimed that disproportionate numbers of immigrants from particular countries were mentally or physically defective.24 Reform of the immigration laws in 1965 abolished the quota system and replaced it with one in which the vast majority of newcomers immigrate on the basis of family ties with citizens and lawful permanent residents. During this time, the medical examination process for noncitizens continued to identify those who were disabled, and to place a higher burden on them to prove that they would not become a public charge.25 Over the last several decades, the number of noncitizens excluded on the basis of disability has decreased.26 This change has been explained in part by the aforementioned shift in immigration policy from the focus on fulfilling labor needs to reunifying family members. It can also be attributed to a shift in popular attitudes towards people with disabilities: less fear, stigma, and concerns stoked by eugenic ideology.27 More recently, the reduction in disability-based immigration exclusions stems from changes to immigration law. Many of the immigration restrictions that have the effect of excluding people with disabilities have relaxed.28 The first indication of this trend was a provision within the Immigration Reform and Control Act of 1986 that created a disability waiver of the public charge exclusion for a subclass of undocumented immigrants that became newly eligible to obtain legal status.29 In 1990, Congress made an effort to update the health-related grounds of inadmissibility so that they were in accord with modern medical knowledge and procedure.30 For example, the provision that imposed an additional burden on people with disabilities to prove that they would not become a public charge was removed.31 Finally, the provision that specifically excluded noncitizens with mental retardation, psychopathic personality, or insanity was replaced with a more general exclusion that applied to noncitizens with disabilities who may pose a threat to themselves or others.32 23

24 25

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27 28 29

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For a detailed discussion of the motivations behind the national origins quota system, see Johnson, supra note 15, at 1127–31. Baynton, supra note 4, at 41. See, for example, 8 U.S.C. § 1182(a)(7) (1970) (requiring a noncitizen identified as having a disability that may affect her ability to work to prove that she “would not have to earn a living”). John F. Stanton, Note, The Immigration Laws from a Disability Perspective: Where We Were, Where We Are, Where We Should Be, 10 Geo. Immigr. L.J. 441, 451 (1996). Weber, supra note 1, at 161–62; Stanton, supra note 26, at 452. Weber, supra note 1, at 161. Immigration and Nationality Act § 245A(d)(2)(B)(ii), 8 U.S.C. § 1255a(d)(2)(B)(ii) (2012) (hereinafter INA). 136 Cong. Rec. H 13238 (daily ed. October 26, 1990) (Joint explanatory statement of the Committee of Conference) (stating that the amendments to the Immigration and Nationality Act “repealed several outmoded grounds for exclusion based on health”). Immigration Act of 1990, Pub. L. No. 101–649, § 601, 104 Stat. 4978, 5067 (1990). INA § 212(a)(1)(A)(iii).

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Despite the changed perspectives on people with disabilities, there is still political and popular support for immigration restrictions that operate as exclusions against them. In line with this view, during the recent immigration reform debates the White House favored proposals that increase the proportion of immigrants who enter the country through “merit-based” pathways as opposed to family-based pathways, proposing a points-based system for immigrant admissions. Although no points were deducted for having a disability in these proposals, points were awarded in several categories in which people with certain disabilities are less likely to excel without specialized services, supports, and protections.33 B. The Health-Related Grounds of Inadmissibility A medical examination is a standard requirement for many categories of applicants for admission.34 As part of this examination, a physician must determine whether the applicant has a physical or mental health condition that may make her inadmissible under any of the grounds of inadmissibility. A “Class A” medical condition, as defined in regulations issued by the Department of Health and Human Services, is one which falls within the health-related grounds of inadmissibility, described below.35 A “Class B” medical condition is “a physical or mental health condition, disease, or disability serious in degree or permanent in nature” that may prevent the applicant from caring for herself, attending school, or working, or that may require substantial medical treatment or institutionalization.36 Public health concerns informed by medical knowledge are at the heart of the health-related grounds of inadmissibility today.37 There are four major categories of health-related grounds for inadmissibility. The first ground deems inadmissible noncitizens who have a “communicable disease of public health significance”38 such as gonorrhea, infectious Hansen’s disease, active tuberculosis, and infectious syphilis.39 The second ground applies to noncitizens who have a “physical or mental disorder and behavior associated with the disorder that may pose . . . a threat to the property, safety, or welfare of the alien or others.”40 The third ground makes any 33

34 35 36

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38 39 40

Such categories include years of formal education, English language proficiency, extraordinary achievement, and highly compensated employment. INA §§ 212, 232. 42 C.F.R. § 34.2(d). 42 C.F.R. § 34.2(e); Policy Manual, Vol. 8 – Admissibility, Pt. B – Health-Related Grounds of Inadmissibility, Ch. 2 – Medical Examination and Vaccination Record, USCIS (February 12, 2019), www.uscis.gov/policymanual/HTML/PolicyManual-Volume8-PartB-Chapter2.html. Policy Manual, Vol. 8 – Admissibility, Pt. B – Health-Related Grounds of Inadmissibility, Ch. 1 – Purpose and Background, USCIS (February 12, 2019), www.uscis.gov/policymanual/HTML/ PolicyManual-Volume8-PartB-Chapter1.html. INA § 212(a)(1)(A)(i). 42 C.F.R. § 34.2(b). INA § 212(a)(1)(A)(iii)(I).

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noncitizen who is a “drug abuser or addict” excludable.41 The fourth ground deems inadmissible noncitizens who cannot provide documentation of required immunizations.42 Any condition that would make a person inadmissible under one or more of the four health-related grounds of inadmissibility is considered a Class A medical condition. It is possible for applicants who are subject to some of these grounds to receive a waiver of inadmissibility when they can prove that their medical conditions do not pose a risk to public health.43 C. The Public Charge Ground of Inadmissibility The federal government considers the likelihood of a noncitizen becoming a “public charge” before permitting that person to enter the United States or to become a lawful permanent resident.44 A “public charge” is currently defined as a person who is likely to become “primarily dependent on the government for subsistence, as demonstrated by either (i) the receipt of public cash assistance for income maintenance, or (ii) institutionalization for long-term care at government expense.”45 Past receipt or the likelihood of future receipt of benefits from the following programs are considered: Supplemental Security Income, cash assistance from the Temporary Assistance for Needy Families program, state or local cash assistance programs for income maintenance (often referred to as “general assistance”), and Medicaid for long-term care in a nursing home or mental health institution.46 Officials use a highly discretionary totality of the circumstances type of test in making a public charge determination.47 Information from the medical examination may be used to make this determination, with disability treated as a negative factor.48 Indeed, there does not appear to be any other purpose for identifying noncitizens with Class B medical conditions other than to exclude them under the public charge provision.49

41 42 43

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47 48

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INA § 212(a)(1)(A)(iv). INA § 212(a)(1)(A)(ii). Policy Manual, Vol. 9 – Waivers, Part C – Waivers for Health-Related Grounds of Inadmissibility, USCIS (February 12, 2019), www.uscis.gov/policymanual/Print/PolicyManual-Volume9-PartC.html. INA § 212(a)(4). But note that this ground of inadmissibility does not apply to certain categories of humanitarian immigrants. Field Guidance on Deportability and Inadmissibility on Public Charge Grounds, 64 Fed. Reg. 28689, 28689 (March 26, 1999); 9 FAM 302.8–2(B)(1)(a)(1), Dep’t of State (2018). Field Guidance on Deportability and Inadmissibility on Public Charge Grounds, 64 Fed. Reg. at 28692; 9 FAM 302.8–2(B)(1)(b)–(d). Weber, supra note 17, at 26. Policy Manual, Vol. 8 – Admissibility, Pt. B – Health-Related Grounds of Inadmissibility, Ch. 11 – Inadmissibility Determination, USCIS (February 12, 2019), www.uscis.gov/policymanual/HTML/ PolicyManual-Volume8-PartB-Chapter11.html. Stanton, supra note 26, at 454.

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For most family-based and certain employment-based immigrants, failure to submit an “affidavit of support” from a US-based sponsor will result in a denial of admission under the public charge ground.50 In the affidavit of support, the sponsor promises to support the applicant at an annual income of at least 125% of the federal poverty guidelines or reimburse the government if the applicant receives certain public benefits.51 Prior to January 2018, DOS guidance stated that “a properly filed, nonfraudulent [affidavit of support] shall normally be considered sufficient to overcome the [public charge] requirements.”52 That guidance was changed so that an affidavit of support no longer satisfies the public charge requirements, but merely provides “additional evidence in the review of public charge determination” of visa applicants from abroad.53 This change to public charge policy was just one among many that were made or proposed by the current administration. In August 2019, DHS announced a final rule that could dramatically increase the number of applicants for admission and for adjustment of status who would be excluded under the public charge ground. Notably, the rule changes the definition of public charge to mean “an alien who receives one or more designated public benefits” over a certain period, and expands the types of public benefits that are considered in the determination.54 Of particular concern for people with disabilities, receipt of nonemergency Medicaid by nonpregnant adults would be considered.55 The rule provides more specific guidelines on characteristics that should be considered negative factors in the public charge determination, specifying that health conditions that require extensive treatment or that affect an applicant’s ability to work, attend school, or care for themselves are “heavily weighted negative factor[s].”56 As of the date of publication of this volume, two federal judges have issued nationwide injunctions temporarily blocking implementation of the public charge rule. II. TREATING DISABILITY AS A NEUTRAL FACTOR

The social model of disability holds that “a principal source of the bad effects of disability is society’s treatment of disabled people, rather than disability itself.”57 When society perceives disability as a bad difference from prevalent or valued norms and imposes adverse or punitive conditions on people with disabilities on account of 50 51 52 53 54

55 56

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INA § 212(a)(4)(C), (D). INA §§ 212(a)(4)(B)(ii), 213A. Ira J. Kurzban, Immigration Law Sourcebook 74 (14th ed. 2014) (quoting internal DOS guidance). 9 FAM 302.8–2(B)(3)(b)(1)(a). Inadmissibility on Public Charge Grounds, 84 Fed. Reg. 41292, 41297–41298 (August 14, 2019) (to be codified at 8 C.F.R. pts. 103, 212, 213, 214, 245, and 248). Id. at 41297. Id. at 41445 (noting that such a health condition will not be considered a heavily weighed negative factor if the applicant has private health insurance or the financial resources to pay for treatment). Barnes, supra note 8, at 93.

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this perception, disability becomes stigmatized.58 As a strategy to destigmatize disability, some disability theorists and advocates have promoted a view of disability as a mere difference from the norm. From this perspective, “people with disabilities occupy a social status analogous to that of racial and ethnic minorities and women, are victimized by negative stereotypes of dependence and incompetence, and experience intentional and institutional discrimination that limits their ability to fully participate in society.”59 A strategy to destigmatize disability could be modeled on the civil rights laws and policies that protect racial minorities from discrimination. In the context of immigration admissions, this would mean seeking formal equality by demanding that disability be treated as a neutral factor. A. Analysis of the Health-Related Grounds It is challenging to conceive of a way in which the health-related grounds of inadmissibility could be reformed in order to destigmatize disability from a mere difference perspective. Consider the second health-related ground, which applies to noncitizens who have a “physical or mental disorder and behavior associated with the disorder that may pose . . . a threat to the property, safety, or welfare of the alien or others.”60 This provision relies on the assumption that medical examiners can identify individuals with mental disorders who will engage in violent behavior in the future, which is not the case.61 It is also grossly overinclusive: the term “mental disorder” covers a wide range of health conditions, including those that are unlikely to result in harm to oneself or others. As a result, there is a great risk that this healthrelated exclusion will bar noncitizens who are considered normatively “undesirable” for other reasons. A mere difference approach requires a more focused assessment of the threat that individual noncitizens pose to society, independent of their disabilities. In practice, reforms of this health-related ground of inadmissibility might include: (1) eliminating the language about “physical or mental disorder” from the statute, to ensure that it is not a primary factor in the determination of dangerousness; (2) reclassifying the ground under a category of inadmissibility other than health-related, such as the criminal or national security grounds; and (3) amending administrative materials to remove references to specific mental disorders that are associated with harmful behavior. Although this would be a symbolic step toward destigmatizing disability from the perspective of DLS, it may not have much practical effect. Immigration officials 58 59

60 61

See Joan Susman, Disability, Stigma and Deviance, 38 Soc. Sci. Med. 15, 16 (1994). Richard K. Scotch & Kay Schriner, Disability as Human Variation: Implications for Policy, 549 Annals Am. Acad. Pol. & Soc. Sci. 148, 149 (1997). INA § 212(a)(1)(A)(iii), 8 U.S.C. § 1182(a)(1)(A)(ii) (2012). See Jeremy W. Coid et al., Predicting Future Violence Among Individuals with Psychopathy, 203 Brit. J. Psychiatry 387 (2013).

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could still rely on disability diagnoses in decisions to exclude noncitizens who they believe may pose a threat of harmful behavior in the future. So long as medical examinations of noncitizens are conducted, information about disabilities will appear in immigration applications. Another potential way to treat mental illnesses and intellectual disabilities as mere differences, while preserving the goal of excluding those who would engage in harmful behaviors, is to chip away at the overinclusiveness of the inadmissibility ground. One way to do this would be through procedural reforms that hold the government to a higher evidentiary standard when it deems a person inadmissible under this ground. Still, neither of these reforms comes close to achieving “the reimagination of the place of disability within society” that DLS promotes.62 B. Analysis of the Public Charge Ground The inclusion of “health” among the factors in the public charge test is intended to deny admission to people whose health conditions would prevent them from becoming self-sufficient through work. Overall, people with disabilities are less welloff financially than people without disabilities.63 This is attributable, in part, to society’s inadequate accommodation of disabilities in schools and workplaces.64 In addition, many (but not all) disabilities arise from health conditions that require time and money to treat.65 Finally, noncitizens with disabilities who grew up in countries with fewer protections for people with disabilities may have been actually or constructively denied access to educational and employment opportunities. It should be no surprise that, as a group, people with disabilities are disproportionately subject to the public charge ground of inadmissibility. For all of these reasons, the very act of recording a disability in an immigration application file likely has the effect of characterizing it as a bad difference. Given the broad discretion that immigration officers have in making this determination, and the fact that their decisions are essentially unreviewable, there is a strong possibility that longstanding social norms linking disability with dependency creep into these judgments.66 If the public charge rule goes into effect, the new guidelines designating certain health conditions as heavily weighted negative factors will all but require immigration officers to treat disabilities as bad differences. 62 63

64 65 66

Kanter, supra note 6, at 410. See Samuel R. Bagenstos, The Future of Disability Law, 114 Yale L.J. 1, 9 (2004) (describing the relationship between disability and poverty). See id. at 23–41. Weber, supra note 1, at 173. See Stanton, supra note 26, at 456. On the non-reviewability of consular decisions to deny visas, see INA §§ 104(a), 221(a), 8 U.S.C. §§ 1104(a), 1201(a) (2012); Saavedra Bruno v. Albright, 197 F.3d 1153 (D. C. Cir. 1999); 22 C.F.R. § 42.81. But see Kleindienst v. Mandel, 408 U.S. 753 (1972) (holding that courts may review the denial of visas that implicate the constitutional rights of US citizens for abuse of discretion).

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To treat disability as a mere difference or neutral factor in this context – analogous to sexuality, gender, race, and ethnicity – health should be eliminated as a factor in the public charge determination. This reform would address unfair discrimination in the public charge assessments of a subset of people with disabilities: those who are able to become self-sufficient through work. For example, with conditions like blindness and deafness, it is possible to distinguish between impairments and the related disabilities, which can be described as the “socially mediated effects of impairments.”67 However, one can conceive of many health conditions for which it is difficult or impossible to separate the impairment from the disability. Having a health condition that falls within this category does make a person less likely to participate in the workplace for reasons other than employer discrimination, and therefore more likely to become a public charge. Therefore, a reform of the public charge ground that merely eliminates health as a factor in the public charge determination process would not likely affect the public charge ground’s disproportionate impact on noncitizens with disabilities. In order to have an effect, the reform must squarely acknowledge the fact that people with disabilities are indeed disproportionately likely to rely on public benefits, regardless of whether reasonable accommodations could theoretically ameliorate the disability. III. DISABILITY AS A FORM OF HUMAN VARIATION THAT JUSTIFIES SPECIAL TREATMENT

In the previous Section, I described how treating disability as a neutral factor in immigration admissions would not likely have a significant effect on the inadmissibility of people with disabilities. In this Section, I propose an alternative mere difference approach that frames disability as a form of human variation while acknowledging disability’s inherent costs and our shared human vulnerability to these costs. Such an account of disability would support efforts to destigmatize disability in immigration law and to promote a more just societal allocation of the economic costs of disability. It does this by (1) characterizing immigrants with disabilities as valuable members of society, and (2) emphasizing collective responsibility for carrying the costs of disability. The civil rights approach to combatting discrimination on the basis of race, ethnicity, and gender addresses the source of disadvantage for members of those groups: stereotypes of dependence and incompetence that cause them to be undervalued as scholars in the context of education, employees in the context of the workplace, and “productive” coresidents or citizens in the context of immigration admissions. However, this approach does not work as well to advance equality for people with disabilities. This is because the fundamental source of disadvantage for 67

Barnes, supra note 8, at 89 n.1.

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people with disabilities in immigration admissions is not unfair discrimination; it is the inherent and inevitable costs of disability. Characterizing disability as a neutral factor for immigration admissions purposes fails to acknowledge these costs. A model of disability that acknowledges these costs does not require one to view disability as a bad difference, so long as one recognizes that “something can be neutral overall, but have aspects which are bad.”68 Likewise, by contemplating the nonstandard ways in which immigrants with disabilities contribute to the polity, a mere difference view can acknowledge the ways in which society is better off because of its inclusivity.69 Although a thorough exploration of the instrumental value of promoting human diversity in US society through immigration policy is beyond the scope of this chapter, I posit that any reform of the disability-related grounds must be built on the understanding that disablement is a category of human vulnerability that is common and – for many – inevitable. This approach would require US citizens to confront directly the fact that the application of even neutralized disability-related grounds to noncitizens with disabilities results in the territorial exclusion of a group of people who constitute a substantial minority of any given population. Finally, since potential for economic productivity is one standard by which immigrants seeking admission are judged, this approach would raise the question of the government’s moral responsibility for maximizing each immigrant’s productivity. Currently, disability-related costs are borne solely by noncitizens seeking admission, their immediate family members, and their sponsors. For noncitizens with disabilities who manage to gain admission to the United States, as well as those who become disabled after admission, the health-related financial burden of disability is heavy. Noncitizen eligibility for publicly financed healthcare and other health-supporting benefits is limited. Without affordable access to healthcare, people with disabilities are vulnerable to falling into a cycle of health complications, decreased employment prospects, and poverty. Therefore, reform of the disability-related grounds of inadmissibility will not be complete without a fundamental societal shift toward embracing collective responsibility for maximizing the welfare of people with disabilities, which means willingly assuming the costs of their disabilities. An approach that frames disability as human variation supports reforms that guarantee more than formal equality for people with disabilities; it pushes for something closer to functional equality, which would require fundamentally different treatment for people with disabilities in immigration admissions.

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Elizabeth Barnes, The Minority Body: A Theory of Disability 75–76 (2016). See, for example, Angela Glover Blackwell, The Curb-Cut Effect, Winter 2017 Stan. Soc. Innovation Rev. 28 (2017).

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IV. CONCLUSION

In US immigration law, disability has historically been associated with deviance and has served as the basis for legal barriers to entry and eventual citizenship. Although the law has evolved to accommodate immigrants with disabilities in some ways, significant legal barriers still exist on account of the widespread, persistent characterization of disability as a bad difference from the norm. One potential strategy to treat disability as a mere difference in the law of immigration admissions is modeled on the civil rights approach, which supports reforms that would treat disability as a neutral factor in admissions decisions. Although such a strategy would likely result in the admission of a subset of disabled noncitizens who would otherwise be denied, it would be ineffective at destigmatizing disabilities that are difficult or impossible to accommodate, and that have inherent costs. I propose an alternative strategy based on the mere difference view: frame disability as a form of human variation, while acknowledging disability’s inherent costs and our shared human vulnerability to those costs. This perspective represents a promising first step toward supporting both a destigmatizing account of disablement in immigration admissions and a more just societal allocation of the economic costs of disability.

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15 The Normative Bases of Medical Civil Rights Craig Konnoth

Being designated as disabled under the law comes with an array of legal rights. These rights range from negative rights against discrimination by the state and by private actors in employment and public accommodations1 to positive rights to accommodations,2 financial (welfare) benefits,3 and even healthcare.4 Other statuses also trigger these kinds of protections, but few produce the same panoply of benefits: for example, race discrimination similarly elicits antidiscrimination protections by the state, but rarely any positive rights. Unemployment can yield welfare benefits, but is rarely protected under antidiscrimination law.5 Thus, “the antidiscrimination laws that govern disability are significantly more equality enhancing than those governing race.”6 Even if one would think otherwise,7 the fact remains that a legal designation based on disability produces legal rights that are robust when compared to those that other designations trigger. Where do these rights come from? To see why this is a puzzle, it is helpful to note where these rights do not come from. When it comes to rights driving from other 1

2

3 4

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6 7

See Rehabilitation Act, 29 U.S.C. § 794(a) (2012) (prohibiting discrimination in programs involving, inter alia, federal funding); Americans with Disabilities Act, 42 U.S.C. §§ 12102, 12131, 12181 (2012) (prohibiting discrimination in employment, by public entities, and in public accommodations respectively). Examples include “job restructuring, part-time or modified work schedules, reassignment to a vacant position . . . and other similar accommodations.” 42 U.S.C. § 12111(9)(B) (2012). 20 C.F.R. §§ 404.1520(c), 416.920(c) (2017) (Social Security Act implementing regulations). The social security programs are a trigger for other benefits. Social Security Disability (SSDI) beneficiaries become eligible for Medicare, and most Supplemental Security Income (SSI) beneficiaries for Medicaid. Supplemental Security Income (SSI) Disability & Medicaid Coverage, Healthcare.gov, www.healthcare.gov/people-with-disabilities/ssi-and-medicaid/ (last visited January 18, 2017); Disability Planner: Medicare Coverage If You’re Disabled, SSI.Gov, www.ssa.gov /planners/disability/dapproval4.html (last visited January 18, 2017). 42 U.S.C. § 502 (2012). State protections are sparse. Discrimination Against the Unemployed, National Conference of State Legislatures, www.ncsl.org/research/labor-and-employment/discriminationagainst-the-unemployed.aspx (last visited August 6, 2018). Kimani Paul-Emile, Blackness as a Disability?, 106 Geo. L.J. 293, 332–33 (2018). I qualify Paul-Emile’s claim by looking at enforcement data, for example, but largely agree with her. See Craig Konnoth, Medicalization and the New Civil Rights, 72 Stan. L. Rev. (forthcoming 2020).

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kinds of designations, the Constitution is an important (although not exclusive) part of the story. The racial justice movement, for example, will include in its narrative the Reconstruction amendments and Brown v. Board of Education,8 the women’s rights movement Roe v. Wade,9 and the gay rights movement the recent marriage equality decisions.10 Those rights exist, some in the movements would argue, because the Constitution says they do. Disability rights, however, do not have the same constitutional pedigree. Constitutional victories have been limited in scope;11 statutory claims have been far more impactful.12 I claim that the reach – and limits – of disability rights are best explained by how society conceives of the onset and causes of disability. There are three dominant causal paradigms that drive disability rights. The first paradigm saw disability as the result of bad luck and offered resources for the disabled. This paradigm yielded a first round of rights legislation. The second paradigm realized that the burdens of disability arose not just from a lack of resources, but also from a lack of social regard and respect and yielded a second generation of rights. Finally, a third paradigm limited the reach of these rights, as it saw disability as individual fault. Before I proceed, it is worth noting that I subsume conceptions about disability as falling within a larger universe of medical designations of impairment. Simi Linton, the prominent disability theorist, explains that to be disabled a person must have an impairment that “significantly affect[s] daily life and . . . with some consistency . . . present[s] himself/herself to the world at large as a disabled person.”13 Both as a theoretical and a legal matter, disability designations borrow from medical designations. Thus, conceptualization of disability in each of these paradigms essentially turns on conceptualization of medical status in a particular context. I. MEDICAL STATUS AS BRUTE LUCK

From ancient Greece until the nineteenth century, an individual’s medical status was primarily attributed to fault on her part. An individual’s physical state depended on the balance of “humors” in her body,14 and her behavior could cause an 8 9 10 11

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347 U.S. 483 (1954). 410 U.S. 113 (1973). Obergefell v. Hodges, 135 S. Ct. 2071 (2015); United States v. Windsor, 570 U.S. 744 (2013). City of Cleburne v. Cleburne Living Center, Inc., 473 U.S. 432 (1985), held that requiring a special use permit for a proposed group home violated the Equal Protection Clause, but the case rejected the broader position that disability discrimination deserved elevated scrutiny, and thus is often seen as a loss. See, for example, Olmstead v. L.C., 527 U.S. 581 (1999) (holding that individuals with mental disabilities have the right to live in the community rather than in institutions under Title II of the ADA); Bragdon v. Abbott, 524 U.S. 624 (1998) (holding that individuals living with HIV are covered by the ADA). Simi Linton, Claiming Disability: Knowledge and Identity 12 (1998). See, for example, Philip Moore, The Hope of Health, Wherin is Conteined a Goodlie Regimente of Life: As Medicine, Good Diet and the Goodlie Vertues of Sonderie Herbes (1564), available at https://

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imbalance in the humors.15 With Christianity, sin became a secondary explanation for disease. Humor imbalances were the proximate cause, but the ultimate cause was God.16 However, medical discoveries in the nineteenth century changed the perception of causality – medical misfortune was seen as the result of bad luck rather than individual behavior. In the late 1800s, numerous scientists showed that microorganisms separate from the individual caused disease.17 Although certain medical conditions were still seen as the result of individual shortcomings, society began to see germs as the main culprit in illness: by the turn of the century, many believed bacteria caused conditions we now know are noninfectious or viral, such as cancer or even depression.18 Subsequent scientific developments have reinforced that understanding. As scientists offered genetic explanations for disease, medical burdens continued to be seen as being, to a significant extent, the result of bad luck – as survey participants have put it, “there is no control” over genetic ailments, so “it’s not your fault.”19 The change in the perceived causes of ill health combined with political events to produce legal rights in the form of benefits or resources. The New Deal embedded an ethic of luck egalitarianism into welfare legislation – primarily through social security legislation.20 On the luck egalitarian view, if an individual suffered misfortune through no fault of their own, society should help them. These benefits were not charity, but owed to an individual as a matter of right.21 Legislators from both sides of the aisle appeared to agree on the principle.22 The problem was

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quod.lib.umich.edu/e/eebo/A07669.0001.001/1:8.1?rgn=div2;view=fulltext; Humoralism, Webster’s New World Medical Dictionary 204 (3rd ed. 2008). Moore, supra note 14, at Ch. 1 (“If a due order and moderate measure be kept . . . then the bodie continueth alwayes vnto the last age in safetie, and Health . . . there ought no litle regarde to be had, what kinde of foode is to bee vsed.”); see also Edwards, A Treatise Concerning the Plague and the Pox Discovering as Well the Meanes How to Preserve from the Danger of these Infectious Contagions, as also How to Cure Those Which are Infected with Either of Them (1652) (“Also disordering ones self, either in diet or exercises bring∣eth one into the Pestilence; therefore in time of contagion, outrages and surfets are to be avoided, as also all excesse of eat∣ing, drinking, sweating, bathing, lechery, and all other things that open the pores of the body, and enter thereby ill aires, which invenome the lively spirits.”), available at https://quod.lib.umich.edu/e/eebo/A37944.0001.001/1:4.3.9?rgn=div3; view=fulltext. See Edwards, supra note 15(“howsoever [illness] doth come . . . it is a just punishment of God, laid upon us for our manifold sins”). Deborah A. Stone, The Disabled State 91 (1986). Id. at 96. See Bettina Meiser, et al., Implications of Genetic Risk Information in Families with a High Density of Bipolar Disorder: An Exploratory Study, 60 Soc. Sci. & Med. 109 (2005). Carl Knight, Luck Egalitarianism, 8 Phil. Compass 924 (2013). Matthew Diller, Entitlement and Exclusion: The Role of Disability in the Social Welfare System, 44 UCLA L. Rev. 361, 405–06 (1996) (distinguishing between charity- and rights-based benefits). The standard contemporary account at the time was that of social insurance, even though as a practical matter the system may not operate in that way. See Martha Derthick, Policymaking for Social Security 231–32 (1979).

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implementation: which kinds of misfortune were the result of bad luck, and which were the result of bad decisions? All legislators agreed that old age and, in many cases, unemployment were not caused by individual fault, and enacted the original social security legislation to that effect, which provided financial benefits when those misfortunes occurred.23 Progressive legislators unsuccessfully claimed for many years that medical status deserved protection, citing the evolving understanding that medical harm was the result of brute luck rather than individual fault.24 Through the 1940s and 1950s, they annually introduced universal, compulsory, health insurance as well as a disability component to social security, arguing throughout that sickness was not the fault of the worker.25 As one congressman passionately explained: “one day he suffers a severe heart attack or is instantaneously mashed up in the mines [and he is] incapacitated through no fault of [his] own”;26 precisely because “it is impossible to anticipate such a calamity,” disability is therefore a “hardship even greater than the loss of earnings from forced retirement because of age.”27 Opponents continued to emphasize problematic individual behavior. Those claiming disability would present “doubtful or fraudulent claims,” and would avoid rehabilitation.28 But by 1956, progressives developed sufficient consensus; social security benefits would flow from certain kinds of medical status, as medical misfortune was generally the result of bad luck.29 Although it does not pertain to disability status per se, the passage of Medicare reflects a similar model of illness as based on bad luck, as did the social security legislation. As the work of Medicare authority Ted Marmor suggests, the controversy over brute luck and fault dominated Medicare’s passage. When Congress turned to consider Medicare in 1958,30 proponents emphasized that illness and poverty were not the fault of the elderly: “through no fault of their own, they had lower earning capacity and higher medical expenses than any other adult age group.”31 This emphasis, on the faultlessness of the individual, became possible only as the result of the transformation in understandings of fault in relation to medical status earlier in the century. 23 24

25 26 27 28

29 30 31

Social Security Act of 1935, Pub. L. No. 74–271, 49 Stat. 620, 624. See 96 Cong. Rec. 12340 (August 9, 1950) (statement of Rep. Lynch) (illness strikes “without advance warning” and is a stronger case for insurance); id. at 12340 (August 3, 1950) (statement of Rep. Biemeller) (people living with disabilities “play a tragic role . . . people who have worked . . . but who through no fault of their own are now destitute.”); id. at 8830 (statement of Sen. Myers) (disability is “accidental” and “force[s] premature retirement”). Id. at 7. 96 Cong. Rec. 12775 (August 9, 1950) (statement of Rep. Perkins). Id. at 11837 (statement of Rep. McCormack). Advisory Council on Soc. Sec., Permanent and Total Disability Insurance, S. Doc. No. 80–162, at 20 (1948). Diller, supra note 21, at 405–06 has additional accounts. See Diller, supra note 21, at 408. Theodore R. Marmor, The Politics of Medicare 22 (2000). Id. at 11–12.

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Craig Konnoth II. MEDICAL STATUS AS SOCIALLY CONSTRUCTED

In the 1970s, further shifts in the concept of medical status created additional policy transformation. While the dominant narrative at the time suggested that medical status and its harms were the result of brute luck, new medical activism from the disability movement argued that certain harms that were seen as physiological actually originated from social practices that disregarded or discriminated against individuals. Thus, the law has a responsibility to alter social practices that degrade and harm, and, thus, to protect these individuals. The disability rights movement, which began in earnest in the 1970s,32 claimed that social conditions interact with an individual’s biological traits to enable – or disable – her functioning. A person in a wheelchair is disabled not just because she is in a wheelchair, but because society prefers stairs over ramps. Individuals with hearing, speech, or sight deficits are disabled, not just because of their biological characteristics, but also because of institutional and community practices and procedures, such as the choice to communicate through sound or writing rather than signing or braille, respectively. Further, social attitudes and prejudice result in intentional discrimination that additionally harms disabled individuals.33 The legislation the movement produced such as the Rehabilitation Act and the Americans with Disabilities Act (ADA) were directly responsive to this model of disability, focusing on alleviating social harms.34 The ADA, for example, is “targeted at social responses to and perceptions of disability.”35 The architects of the ADA focused squarely on the “outright intentional exclusion, the discriminatory effects of architectural, transportation, and communication barriers, overprotective rules and policies, failure to make modifications to existing facilities and practices, exclusionary standards and criteria, segregation, and relegation to lesser services, programs, activities, benefits, jobs and other opportunities” – that is, the social practices – that marginalize the disabled.36 Thus, the ADA requires modifications when existing practices unintentionally exclude the disabled. Similarly, the Individuals with Disabilities Education Act lays out rights and procedures so that parents can ensure 32

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On Richard Scotch and Sharon Barnartt’s account, the disability movement was jump-started by the growth of independent living centers, centers where disabled individuals across disabilities could meet with each other and engage in activism, and was also inspired by the racial justice movement. Sharon Barnartt & Richard Scotch, Disability Protests: Contentious Politics 1970–99, 43, 51, 59 (2001). See infra notes 46, 48–49, and accompanying text. Rehabilitation Act of 1973, Pub. L. No. 93–112, 87 Stat. 355, 394 (codified as amended at 29 U.S.C. § 794 (2012)); Americans with Disabilities Act of 1990, Pub. L. No. 101–336, 104 Stat. 327 (codified as amended at 42 U.S.C. § 12101). Chai R. Feldblum, Definition of Disability under Federal Anti-Discrimination Law: What Happened – Why – And What Can We Do About It, 21 91 Berkeley J. Emp. & Lab. L. 1021 (2000). See also Matthew Diller, Dissonant Disability Policies: The Tensions Between the Americans with Disabilities Act and Federal Disability Benefit Programs, 76 Tex. L. Rev. 1003, 1060 (1998) (“In general, the ADA and the disability benefit programs ask society to think about disability in different and inconsistent ways.”) 42 U.S.C. § 12101(a)(5)–(7).

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that children with disabilities are appropriately accommodated to receive a fair educational program.37 The Fair Housing Act and the Help America Vote Acts require accommodations for people with disabilities.38 III. RIGHTS AS RESOURCES VERSUS RIGHTS AS RECOGNITION

Before turning to the third, and final, approach to considering disability, it would be helpful to emphasize a key distinction in the approach to rights I outline above and situate it within the disability literature. The first generation of disability rights primarily spoke in the key of resource distribution: provide resources to the worse off who are victims of brute luck. The second generation sought to accord the disabled social respect and regard, to make up for the injustices and disregard that are socially created. This distinction draws from an important classification in political philosophy between rights based on redistribution and rights based on recognition, originated by Nancy Fraser39 and popularized in subsequent debates.40 Fraser distinguishes between two forms of injustice. On one hand lies “socioeconomic injustice, which is rooted in the political-economic structure of society” such as “economic marginalization.”41 This injustice animates movements that seek to redistribute resources. On the other hand lies “injustice [that] is cultural or symbolic. It is rooted in social patterns of representation, interpretation, and communication,” which includes “nonrecognition (being rendered invisible via the authoritative representational, communicative, and interpretative practices of one’s culture); and disrespect (being routinely maligned or disparaged).”42 Fraser argues that the 1970s saw a replacement of the politics of redistribution – which focus on resources – by a politics of recognition, which focus on addressing disrespect and disregard. She seeks a rethinking of the politics of “recognition so that they can be integrated with struggles for redistribution” in a way that can “supplement, complicate and enrich redistributive struggles.”43 The two generations of rights I outline correspond to Fraser’s taxonomy. The Social Security Act sought to provide resources to the disabled. However, it did so in a way that was disrespectful and did not recognize their possible contribution to society: it “create[s] a boundary that separates ‘the disabled’ from the rest of 37 38

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Pub. L. No. 101–476, 104 Stat. 1142 (codified as amended at 20 U.S.C. § 1400). See 42 U.S.C. § 3604(f)(1); see also Michael E. Waterstone, Disability Constitutional Law, 63 Emory L.J. 527, 546 (2014). See Nancy Fraser, From Redistribution to Recognition? Dilemmas of Justice in a “Post-Socialist” Age, 212 New Socialist Rev. 68 (1995). See Nancy Fraser & Alex Honneth, Redistribution or Recognition? A Political-Philosophical Exchange (2003). Fraser, supra note 39, at 71. Id. at 73. Nancy Fraser, Rethinking Recognition, 3 New Left Rev. 107, 108 (2000).

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society.”44 The ADA, on the other hand, seeks to address precisely this “outright intentional exclusion . . . and relegation” that the disabled face.45 It seeks to integrate disabled individuals into society, to remedy prejudice and disregard, and to allot to the disabled recognition of the travails they experience as the result of social prejudice. At the same time, the ADA provides resources to the disabled – it satisfies Fraser’s demand that recognition “enrich” the understanding of the way in which resources should be allotted to underprivileged individuals. The distinction I draw deviates from the orthodoxy of disability studies in important ways. Disability scholars generally distinguish between a so-called medical model and a social model of disability.46 On the account of the medical model, the key harm individuals faced lay in their bodies – their deafness, immobility, or blindness. The best cure for this is, well, literally, a cure: the medical establishment should cure the bodies of the disabled, to make sure that they are “well” again. The flipside is the social model, where the harm lies not in the individual’s body, but in society’s choices not to accommodate individuals, as I discuss above.47 Disability activists argue that the medical model is problematic. Just as seeking to change or deemphasize one’s race, gender, or sexual orientation devalues those identities,48 medical activists would argue that top-down efforts that seek rehabilitation above all else to erase or “cure” a particular medical condition also stigmatize these conditions and subordinate patients to medical institutions.49 They argue that instead of segregating individuals, or changing or “curing” them, the focus should be on altering society so that these individuals can be integrated into it. The medical–social distinction raises many problems, which I cannot discuss in detail here. However, the key problem is this – disabled individuals seek social solutions, such as architectural accommodations. Many also seek medical cures. Indeed, many communities engage with both clinical and social solutions, which sometimes creates a tension. As the head of the nation’s largest Alzheimer’s Association explained, if “you emphasize that people have rich lives and should play more of a role” in society, as does the ADA’s social model, it is harder to convince “decisionmakers . . . that this disease is awful, and that we should get rid of 44 45 46

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Diller, supra note 35, at 1015. See supra note 36. For full accounts, see Richard K. Scotch, Models of Disability and the Americans with Disabilities Act, 21 Berkeley J. Emp. & Lab. L. 213, 214 (2002); Feldblum, supra note 35, at 96 (2000). See also Diller, supra note 35, at 1060 (“In general, the ADA and the disability benefit programs ask society to think about disability in different and inconsistent ways.”) See supra text preceding note 33. See, for example, Kenji Yoshino, Covering, 111 Yale L.J. 769 (2000). Alan Radley, Making Sense of Illness: The Social Psychology of Health and Disease (1994); Alexander Segall, The Sick Role Concept, Understanding Illness Behavior, 17 J. Health & Soc. Behavior 162 (1976); see also Michael Bury, The Sociology of Chronic Illness: A Review of Research and Prospects, 13 Soc. Health & Illness 451 (1991); Michael Bury, Social Constructionism and the Development of Medical Sociology, 8 Soc. Health & Illness 137 (1988).

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it” – the medical model.50 “If you allow one picture to dominate, you get a distorted view.”51 But the duality is at the heart of many disability-related movements. Thus, AIDS and breast cancer activists make medical demands regarding compassionate access to drugs, expanded clinical trials, and increased government funding – medical solutions.52 At the same time, they seek social accommodations, under the ADA, for example.53 One may simply see the question as slicing the issue in different ways. The resources–recognition framework might be one way of looking at the coin; the medical–social framework another. But I would suggest, preliminarily, at least, that the former is superior to the latter. Many disabled individuals might seek medical treatment – and should not be criticized for doing so. The key point is that that treatment should be carried out respectfully, chosen by the disabled individual as a moral agent in charge of her own destiny rather than foisted upon her as a condition of societal respect. And if she chooses, instead, to rely simply on social solutions rather than medical treatment, then those should also be available. What codes as respect will differ from context to context, but will not turn merely on whether the chosen mechanism involves medical treatment or social alteration. Accordingly, on my account, the key distinction at issue is between rights that offer merely resources without social regard and rights that offer resources along with recognition. IV. DISABILITY AS INDIVIDUAL FAULT

Even as new laws and policies have yielded disability rights – both in the form of resources and recognition – traces of older understandings of disability remain in the law and limit these rights. These limits seek to exclude individuals with medical statuses that they are at fault for incurring. On this view, when individuals fail to take care of themselves, or engage in unsavory behavior, they should not be able to take advantage of medical civil rights. To take one example, social security regulations state: “in order to get benefits, you must follow treatment prescribed by your medical source(s) if this treatment is expected to restore your ability to work.”54 Underlying this requirement is the understanding that disability is sometimes the fault of the individual – and that she must be required to remedy it. These requirements have led to controversy, of course, such as over whether some conditions are actually within the control of the individual and whether they can remedy them.55 And the 50

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Rene´e L. Beard, Advocating Voice: Organisational, Historical and Social Milieux of the Alzheimer’s Disease Movement, 26 Soc. Health & Illness 797, 806 (2004). Id. Sandra Morgen, Into Our Own Hands: The Women’s Health Movement in the United States, 1969–1990 (2002). See Bragdon v. Abbott, 524 U.S. 624 (1998) (ADA covers HIV discrimination). 20 C.F.R. § 404.1530 (2017). See McGlone v. Chater, 906 F. Supp. 402, 406 (E.D. Ky. 1995).

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regulations themselves seek to recognize that sometimes curable conditions are not an individual’s fault: “a failure to seek treatment for a period of time may be a factor to be considered against the plaintiff . . . unless a claimant simply has no way to afford or obtain treatment to remedy his condition.”56 The ADA negotiation process between progressives and conservatives yielded a similar result. Even as it protects individuals with many medical statuses, it excludes from its coverage “transvestism, transsexualism, pedophilia, exhibitionism, voyeurism, gender identity disorders not resulting from physical impairments, or other sexual behavior disorders; compulsive gambling, kleptomania, or pyromania; or psychoactive substance use disorders resulting from current illegal use of drugs.”57 Republican opponents of the bill contrasted “people in wheelchairs or who have some kind of a physical disability . . . who are trying to overcome it” – that is, those whose conditions are not their fault – with “homosexuality and bisexuality . . . exhibitionism, pedophilia, voyeurism . . . compulsive kleptomania, or other impulse control disorders.”58 These latter conditions “lack[] any physiological basis” and constitute “behavior . . . which individuals are engaging in of their own volition . . . [These] people must bear some responsibility for the consequences of their own actions.”59 While conservative senators sought to characterize all mental conditions in this way, progressives were quick to respond that society was at fault for many of the burdens the disabled experienced and managed to whittle down the list of exclusions.60 The imagined dichotomy in the ADA between medical conditions that are the fault of the individual and those that are not became clear in subsequent litigation. In Sutton v. United Air Lines,61 for example, the Supreme Court held (against the Equal Employment Opportunity Commission and most courts of appeals)62 that 56 57

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Id. 42 U.S.C. § 12211(b) (2012). As Ruth Colker rightly observes, the ADA is a “tradeoff.” Ruth Colker, Homophobia, AIDS Hysteria, and the Americans with Disabilities Act, 8 J. Gender Race & Just. 33, 34 (2004). 135 Cong. Rec. S10753 (daily ed. September 7, 1989) (statement of Sen. Armstrong). See also Jonathan C. Drimmer, Cripples, Overcomers, and Civil Rights: Tracing the Evolution of Federal Legislation and Social Policy for People with Disabilities, 40 UCLA L. Rev. 1341 (1993). For an excellent treatment of the legislative history of these exclusions, see Kevin M. Barry, Disabilityqueer: Federal Disability Rights Protection for Transgender People, 16 Yale Hum. Rts. & Dev. L.J. 1, 15 (2013). 135 Cong. Rec. S10796 (daily ed. September 1989) (statement of Sen. Rudman). See id. at S10768 (daily ed. September 7, 1989) (statement of Sen. Harkin) (“There is a wellspring of fears and unfounded prejudices about people with disabilities, unfounded fears, whether people have mental disorders, whether they are manic depressives or schizophrenia or paranoia, or unfounded fears and prejudices based upon physical disabilities. The point of the [ADA] is to start breaking down those barriers of fear and prejudice and unfounded fears, to get past that point so that people begin to look at people based on their abilities, not first looking at their disability.”); see also Barry, supra note 57, at 16. 527 U.S. 471 (1999). According to the EEOC’s Interpretive Guidance to Title I of the ADA, “the determination of whether an individual is substantially limited in a major life activity must be made on a case-by-case basis without regard to mitigating measures such as medicines, or assistive or prosthetic devices.” 29 C.F.R.

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individuals are not considered disabled, and therefore subject to ADA protection, if their symptoms are controlled by medication.63 Justice Ginsburg’s concurrence took an even more pointed approach: the statute, she claimed, “does not reach the legions of people with correctable disabilities.”64 Thus, after Sutton, some lower courts claimed that “a plaintiff who does not avail himself of corrective medication is not a qualified individual under the ADA.”65 While the Sutton opinions do not clearly explain their normative approach to disability, scholars have sought to fill the gap by explaining how the opinions rely on deeper understandings of how disability operates.66 My own belief is that Sutton is best explained by the dichotomy between medical burdens that are the fault of the plaintiff and those that are not. As amici explained in Sutton, “Congress designed the ADA to help those individuals who could not help themselves, not to give special privileges to individuals who could control the effects of an impairment but chose not to.”67 The fundamental understanding here is that illness is a condition that is generally not the fault of those it afflicts. In those cases where illness is the fault of the individual, however, Sutton makes clear that legal rights should not be forthcoming. Sutton, of course, is not unique in its reasoning. In other cases judges have taken similar approaches, even if they have not prevailed. To take another example, in McDermott v. Xerox,68 an early case in which an obese individual claimed disability under human rights law, the dissenting judge explained that obesity could not be considered a disability where it was the fault of the individual.69 In so doing, he pointed to legislative history in the New York disability statute that distinguished between a “weight problem . . . [that is] the result of a glandular imbalance, which would seem to be a physiological condition preventing the exercise of a normal bodily function within the meaning of the statute . . . [versus] a poor and uncontrolled diet,” in which case “no disability within the meaning of the statute would exist.”70

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1630.2(j) (1998). See also Bartlett v. N.Y. State Bd. of Law Exam’rs, 156 F.3d 321, 329 (2d Cir. 1998) (following EEOC). Sutton, 527 U.S. at 482–83. Id. at 494 (Ginsburg, J., concurring). Hewitt v. Alcan Aluminum Corp., 185 F. Supp. 2d 183, 189 (N.D.N.Y. 2001) (failing to take PTSD medication); see also Tangires v. Johns Hopkins Hosp., 79 F. Supp. 2d 587, 596 (D. Md. 2000) (asthma medication), aff’d, 230 F.3d 1354 (4th Cir. 2000). But see Siefken v. Vill. of Arlington Heights, 65 F.3d 664, 666–67 (7th Cir. 1995) (treating a diabetic who did not control his disease with medication as disabled under the ADA). For alternative accounts, see Feldblum, supra note 35, at 108; Wendy E. Parmet, Plain Meaning and Mitigating Measures: Judicial Interpretations of the Meaning of Disability, 21 Berkeley J. Emp. & Lab. L. 53 (2000). For reasons I do not discuss here, these accounts leave several questions unanswered. See Konnoth, supra note 7. Brief for Amici Curiae of the Equal Employment Advisory Council et al. at 21, Sutton, 527 U.S. 471 (Nos. 97–1943 & 97–1992). 480 N.E.2d 695 (1985). Id. at 699–700 (Jasen, J., dissenting). Id. at 699.

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It is important to note, however, that the hodgepodge of medical civil rights does not come from any systematic application of these moral attitudes toward medical statuses. Rather, they come from idiosyncratic views among various legislators about particular conditions, arbitrary horse-trading, and uneven compromises – one Republican senator’s support appeared to turn on the fact that his daughter was disabled.71 Importantly, however, fault-based framings of medical status can be reversed – in the case of the ADA, for example, Sutton was overruled by Congress in 2008. At the same time, wellness programs in the Affordable Care Act that allow employers to incentivize gym membership and smoking cessation programs,72 as well as work requirements that have been introduced in order to receive Medicaid in some states,73 suggest that a fault-based approach to disability is alive and well. The government continues, in some cases, to see bad health as the result of individual fault, which the individual herself should fix. V. CONCLUSION

Legal rights derive from advocacy and social change. The kinds of arguments that groups invoke to change the law, however, can be dramatically different. While many minority groups sought protection in the equal protection guarantees of the Constitution, disability rights, instead, developed from the way in which we think of medical harm and medical status. The rights that flow from disability – based both on resources and recognition, as well as their limits – turn on our perception of disabled individuals as the victims of bad luck, of social disregard, or of their own irresponsibility. The different models, and their resulting legislation, is responsible for the broad range of rights that are at times afforded to – or denied – people living with disabilities.

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Senator Pete Domenici strongly opposed his Republican colleagues’ attempts to remove mental disabilities from the bill. As he noted, “Hundreds of thousands of Americans today . . . have been diagnosed or are being treated for manic-depression, bipolar effective disease or schizophrenia . . .. People who have mental illnesses . . . [should] not be automatically discriminated against for employment in this country.” 135 Cong. Rec S10779 (daily ed. September 7, 1989) (statement of Sen. Domenici). Domenici’s daughter had a mental disability. Deborah Sontag, When Politics is Personal, NY Times Magazine, September 15, 2002, at 90. Regulations Under the Americans with Disabilities Act, 81 Fed. Reg. 31125, 31140–41 (May 17, 2016) (to be codified at 29 C.F.R. Part 1630). For an example of these requirements, see Stewart v. Azar, 313 F. Supp. 3d 237 (D.D.C. 2018). These requirements have been the subject of successful challenge. Id.

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16 Judicial Representation: Speaking for Others from the Bench Wendy Salkin1

Being represented has value.2 When another speaks for me, they can give voice to my perspective or interests in fora where my perspective or interests might otherwise go unheard or even unspoken. They may give voice to interests which I do not know how to express or which I do not even know I have. Our traditional understanding of political representation is that it is an activity that takes place only or mostly in discrete and easily recognizable legislative fora – for instance, the Senate or the House of Representatives. But, if we instead think of political representation as a practice of speaking or acting for others that could, in theory, arise anywhere a person’s or a group’s interests arise, then it turns out that political representation may take place anywhere there is a speaker or an actor and an audience. Because we have long clung to our traditional notions of political representation, many types of political representation, though ubiquitous and consequential, remain woefully undertheorized. This essay sets out the beginnings of a theory for one such phenomenon: judicial representation. Judicial representation occurs when, by virtue of what a judge says from the bench (for instance, in an opinion or during oral argument), they come to speak or act on behalf of the members of a group whose interests are at stake in a case. The account offered here will not be fully general.3 It 1

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For insights and comments on many of the ideas that appear in this article, I am grateful to Eric Beerbohm, Nicholas D. Conway, Dick Moran, Govind Persad, Tim Scanlon, Tommie Shelby, and Pars Tarighy. For feedback on drafts of this Chapter, I thank the editors of this volume, as well as participants and audiences at the 2018 Beyond Disadvantage: Disability, Law, and Bioethics Conference at Harvard Law School and the 2019 Meeting of the Philosophy, Politics, and Economics Society. I dedicate this Chapter to the memory of Anita Silvers, a colleague, mentor, and friend who offered encouragement, feedback, and guidance on this Chapter and much else besides. Ideas and arguments advanced in this Chapter are discussed in greater detail in both my doctoral dissertation, Informal Political Representation: Normative and Conceptual Foundations, infra note 2, and a monograph on which I am currently at work, Not Just Speaking for Ourselves, infra note 2. See Wendy Salkin, Informal Political Representation: Normative and Conceptual Foundations (2018) (Ph.D. dissertation, Harvard University) (on file with author) (hereinafter Informal Political Representation); Wendy Salkin, Not Just Speaking for Ourselves (2019) (unpublished manuscript, on file with author). For a general account of judicial representation, see Salkin, Not Just Speaking for Ourselves, supra note 2; for discussion of judges serving in representative roles, see also Phillip Pettit, Varieties of Public

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will concern the judicial representation of groups, rather than individuals, though individuals can also be judicially represented. It will concern the judicial representation of a vulnerable group and, moreover, a group of which no group member will themself be a judge – the severely intellectually disabled. And it will take as its focus just one opinion in just one case – Justice Marshall’s partial dissent in Cleburne v. Cleburne Living Center.4 The judicial representative does not merely speak about the members of the group at issue, but comes to speak for the members of the group in that group’s stead.5 Judicial representation may, in fact, turn out to be part and parcel of what it is to be a judge.6 This essay takes no stand on whether that is so, but simply introduces the concept and attempts to understand its contours in a case where the represented group’s members are, in some sense, unable to speak for themselves.7 The severely intellectually disabled are not appointed or elected as judges. And so, if their circumstances, values, interests, preferences, desires, or perspectives are to be given voice by a court,8 such expression will need to be given by people who are not themselves members of the group. That is, any judicial representative of the severely intellectually disabled will not themself be severely intellectually disabled. And so, as will be discussed in detail in Section III, one concern that arises in the case of interest here (the judicial representation of the severely intellectually disabled), but which also arises in many other cases of political representation, is this: is it possible for a group to be represented well by a person who is not themself a member of the represented group?9 This essay proceeds as follows: Section I provides background on Cleburne. Section II acquaints the reader with Justice Marshall’s partial dissent. Section III

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Representation, in Ian Shapiro, Susan C. Stokes, Elisabeth Jean Wood, and Alexander S. Kirshner, eds., POLITICAL REPRESENTATION (New York: Cambridge University Press) 61–89 (2010). 473 U.S. 432 (1985). Justice Marshall concurred in part and dissented in part. The distinction between speaking for and speaking about is discussed in greater detail below. For discussion as to whether being a judicial representative is an essential feature of being a judge, see Salkin, Not Just Speaking for Ourselves, supra note 2. In this essay, I make no claim as to whether, given proper support, the severely intellectually disabled can speak for themselves simpliciter. Rather, the view developed here relies on the observation that there neither are nor are their likely to be judges who are severely intellectually disabled. As such, anyone who serves as a judicial representative for the severely intellectually disabled will not be a member of the group. The aim of this essay, then, is to explore the following question: Given that no member of the group the severely intellectually disabled is a judge, what principles ought to guide the representative activities of a nonmember who is on the bench and who is well-situated to give voice to the circumstances, values, interests, preferences, desires, or perspectives of members of that group on its members’ behalves? This question is not, of course, only applicable to the severely intellectually disabled, but could be raised for any group for which it is true that no member is a judge. See id. Note that this is narrower than the question whether a severely intellectually disabled person might be represented in court at all – by a lawyer, by amici, or by themself (as a witness or plaintiff, say). For a more complete treatment of this question, see Wendy Salkin, The Limits of Similitude and Deference: Reexamining Core Principles of Political Representation (2018) (hereinafter The Limits of Similitude and Deference) (unpublished manuscript, on file with author).

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explains judicial representation and considers what a judge must know about the represented in order to be a good judicial representative.10 Section IV concludes. I. CLEBURNE V. CLEBURNE LIVING CENTER

It was July of 1980 when “Jan Hannah purchased a building at 201 Featherston Street in the city of Cleburne, Texas.”11 Hannah intended to lease that building to Cleburne Living Center, Inc. (CLC) so that CLC could operate a group home there for the severely intellectually disabled.12 The home would house thirteen men and women who would be “under the constant supervision of CLC staff members.”13 The site of 201 Featherston Street is in an area of Cleburne, Texas that was, at least at the time, zoned as an “Apartment House District” or “R-3 district.”14 According to Section 16 of Cleburne’s zoning ordinance, R-3 sites could be used as sites for hospitals, sanitariums, or nursing homes for “the insane or feeble-minded or alcoholics or drug addicts”15 only if one obtained a special use permit. The City viewed the proposed group home at 201 Featherston as a “‘hospital for the feebleminded,’”16 and, accordingly, required CLC to apply for a special use permit before it could operate the home. Among the concerns that motivated the City Council to “insist”17 that CLC seek a special use permit were “the negative attitude of the majority of property owners located within 200 feet of the Featherston facility” and “the fears of elderly residents of the neighborhood.”18 CLC applied for the permit. After holding a public hearing, the City Council voted three to one to deny CLC the permit.19 The City Council expressed concerns that (i) the students from the junior high school across the street from the site might harass the would-be occupants of the Featherston home, and, in a decidedly more diluvial vein, (ii) the proposed location of the Featherston home was “on ‘a five-hundred-year flood plain.’”20 10

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There are further questions to be asked about what must be the case for a judge to be a good judicial representative. See Salkin, Not Just Speaking for Ourselves, supra note 2. City of Cleburne, Tex. v. Cleburne Living Ctr., 473 U.S. 432, 435 (1985). The Court called this group “the mentally retarded.” I shall not follow the Court in this. Cleburne, 473 U.S. at 435. Id. at 437 n.3. Cleburne, 473 U.S. at 437 n.3 (italics omitted). Id. at 436–437. Id. at 447. Id. at 448. Id. at 437. Id. at 449. As the Court points out, it is not clear why “the possibility of a flood” would serve as a sound basis for a distinction between the Featherston home and, “for example, nursing homes, homes for convalescents or the aged, or sanitariums or hospitals, any of which could be located on the Featherston site without obtaining a special use permit.” Id.

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Perhaps you already know this much. After all, Cleburne is a curious case, and wellknown for being so. It is one of few cases in which the Supreme Court of the United States held a statute or ordinance unconstitutional after having subjected the statute or ordinance to the otherwise very permissive standard of rational basis review.21 And the zoning ordinance at issue was subject to rational basis review, rather than any form of heightened scrutiny, because the majority “refus[ed] to recognize the retarded as a quasi-suspect class.”22 Ultimately, the Court held that requiring a special use permit for the Featherston home denied respondents the constitutionally enumerated equal protection of the laws,23 as there was not “any rational basis for believing that the Featherston home would pose any special threat to the city’s legitimate interests”24 – rather, the Court concluded, “requiring the permit in this case appears . . . to rest on an irrational prejudice against the mentally retarded.”25 Cleburne is also a window onto our target, that overlooked and undertheorized judicial role: the role of the judge as representative, who speaks from the bench as the spokesperson for a group whose interests are at stake in the case before the court. This phenomenon is an instance of a more general phenomenon, informal representation.26 Informal representation can play a crucial role in giving voice to the circumstances, values, interests, preferences, desires, or perspectives of members of marginalized, oppressed, or otherwise vulnerable groups in a society. But, it also gives rise to a number of special concerns when the representative sits on the bench, as will become clear in what follows. II. JUSTICE MARSHALL’S PARTIAL DISSENT AS JUDICIAL REPRESENTATION

Although he dissented in part, Justice Marshall did agree with some of the majority’s judgment. He agreed, for instance, “that all retarded individuals cannot be grouped together as the ‘feebleminded’ and deemed presumptively unfit to live in a community.”27 So, too, did he agree with the majority’s reliance on a background principle that “mental retardation per se cannot be a proxy for depriving retarded people of their rights and interests without regard to variations in individual ability. . . . The Equal Protection Clause requires attention to the capacities and needs of retarded people as individuals.”28 21 22 23

24 25 26

27 28

See also Romer v. Evans, 517 U.S. 620 (1996); United States v. Windsor, 570 U.S. 744 (2013). Cleburne, 473 U.S. at 446. U.S. Const. amend. XIV (“nor shall any State . . . deny to any person within its jurisdiction the equal protection of the laws.”) Cleburne, 473 U.S. at 448. Id. at 450. See, for example, Salkin, Informal Political Representation, supra note 2; Salkin, Not Just Speaking for ourselves, supra note 2. Cleburne, 473 U.S. at 455. Id. at 455–56.

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He denied, however, that the majority in fact relied on “ordinary rational-basis review” in its opinion:29 “Cleburne’s ordinance surely would be valid under the traditional rational-basis test applicable to economic and commercial regulation.”30 Contra the majority, he urged that “it is important to articulate . . . the facts and principles that justify subjecting [Cleburne’s] zoning ordinance to the searching review – the heightened scrutiny – that actually leads to its invalidation.”31 In reasoning towards these conclusions, Justice Marshall emerges as a judicial representative of the severely intellectually disabled. That is, he speaks for the severely intellectually disabled as their representative in their stead through his articulation of their circumstances, values, interests, preferences, desires, or perspectives. It is worth at this point making explicit a conceptual distinction between speaking for and speaking about.32 Speaking for concerns the source of a statement or action – that is, who said something, either actually (the representative, say) or constructively (the represented, say), rather than the content of what was said. What unites instances of speaking for is at least that, in each case, what the speaker says is ascribed to another as though that other said it themself. Speaking about, by contrast, concerns the content of what is said, rather than its source. While there is a conceptual distinction between speaking for and speaking about, this does not mean that the two practices are mutually exclusive. A given instance of speaking can be, simultaneously, both an instance of speaking for and an instance of speaking about.33 By giving voice to the circumstances of the severely intellectually disabled, Justice Marshall not only speaks about the severely intellectually disabled, but also speaks for them as their representative.34 Consider, for instance, his response to the majority’s suggestion that discrimination against the intellectually disabled is somehow, in 1985, a relic of a bygone era:35 For the retarded . . . much has changed in recent years, but much remains the same; out-dated statutes are still on the books, and irrational fears or ignorance, traceable 29 30 31 32

33 34

35

Id. at 456. Id. Id. See Salkin, Informal Political Representation, supra note 2 at 12–13; Wendy Salkin, Speaking For, Speaking About, Speaking With, Speaking Out (2017) (unpublished manuscript, on file with author); see also Linda Alcoff, The Problem of Speaking for Others, 20 Cultural Critique, 5–32, 9 (Winter 1991– 1992); Michael Saward, THE REPRESENTATIVE CLAIM (New York: Oxford University Press), chap. 2, locs. 655–656 of 2569, Kindle. One can, at the same time, both speak about and speak for. See Alcoff, supra note 32. In saying that Justice Marshall emerges as a judicial representative of the severely intellectually disabled through his partially dissenting opinion in Cleburne, I do not mean to suggest that Justice Marshall does so with the authorization of the severely intellectually disabled. Rather, one may emerge as an informal representative without having been authorized by those for whom one speaks or acts. See Wendy Salkin, The Conscription of Political Representatives (2019) (unpublished manuscript, on file with author); Salkin, Not Just Speaking for Ourselves, supra note 2. According to the majority, “lawmakers have been addressing their difficulties in a manner that belies a continuing antipathy or prejudice and a corresponding need for more intrusive oversight by the judiciary.” Cleburne, 473 U.S. at 443 (internal citations omitted).

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to the prolonged social and cultural isolation of the retarded, continue to stymie recognition of the dignity and individuality of retarded people.36

Justice Marshall goes on to insist that the Court should recognize both “the history of discrimination against the retarded and its continuing legacy,” and suggests that this discrimination provides evidence that “the mentally retarded have been, and in some areas may still be, the targets of action the Equal Protection Clause condemns.”37 In addition to bringing attention to the enduring discrimination faced by the severely intellectually disabled, Justice Marshall also gives voice to the weightiness of the interest denied them when they are denied housing of the sort at issue: [T]he interest of the retarded in establishing group homes is substantial. The right to “establish a home” has long been cherished as one of the fundamental liberties embraced by the Due Process Clause. For retarded adults, this right means living together in group homes . . . Excluding group homes deprives the retarded of much of what makes for human freedom and fulfillment – the ability to form bonds and take part in the life of a community.38

The above are incontestably instances of speaking about the circumstances of the severely intellectually disabled. But we ought also to consider whether Justice Marshall’s acts of giving voice to the circumstances, values, interests, preferences, desires, or perspectives of the severely intellectually disabled in a context where they are unable to do so for themselves are instances of speaking for the severely intellectually disabled – thereby serving as their judicial representative. Strictly speaking, whether Justice Marshall is a judicial representative for the severely intellectually disabled depends not merely on whether he speaks or writes about their circumstances, values, interests, preferences, or desires, or even from their perspectives, but also depends on audience uptake – that is, on being taken to speak or act on their behalf by some audience.39 So, to know whether Justice Marshall in fact became an informal representative for the severely intellectually disabled on the basis of his partial dissent in Cleburne depends on whether he received audience uptake – that is, was he understood by one or more audiences to be speaking for the severely intellectually disabled in his partial dissent? For present 36 37 38 39

Id. at 467. Id. at 473. Id. at 461 (internal citations omitted). Many are of the view that for a person to emerge as a representative of a group, it must be the case that the group or at least some of its members play a role in selecting that person to be the group’s representative. With respect to informal representation, I deny that this is so. A party emerges as an informal representative of a group when and because they have been taken to speak or act on behalf of that group by some audience, despite not having been elected or selected to represent that group by means of a corporately organized election or selection procedure. Although it may be the case that the audience is the represented group itself, this need not be so and often is not the case. For more on the emergence conditions for becoming an informal representative, see Salkin, The Conscription of Political Representatives, supra note 34; Salkin, Not Just Speaking for Ourselves, supra note 2.

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purposes, I assume that Justice Marshall received audience uptake and so became a judicial representative for the severely intellectually disabled. Unlike legal representation, a relationship in which one party speaks on another party’s behalf to the court, judicial representation is a practice that can only be undertaken from the bench. It is a relationship in which a party that is not a member of the judiciary is spoken for by the court. It follows that if one is a member of a group that does not have any group members on the bench, any judicial representation that will take place on one’s behalf qua group member will be representation by a judge who is not a member of the group of which one is a part. The fact that members of some groups will only ever be judicially represented by people who are not themselves members of the groups for which they speak may quite reasonably raise concerns about the judicial representative’s ability to represent the group’s members well. III. JUDICIAL REPRESENTATION AND JUDICIAL UNDERSTANDING

Since a judge’s emergence as a judicial representative depends on audience uptake, it is possible that a judge may emerge as a judicial representative without having much understanding at all of the group they come to represent. However, for a judge to be a good judicial representative – where this means, among other things, that the judge is well-informed about the represented group’s members’ circumstances and able to communicate accurately on the represented group’s behalf – the judicial representative will need to have some understanding of the members of the represented group and their circumstances. What, then, must a judge know in order to understand the members of the group and their circumstances? This question, in fact, is better asked as two questions: First, from what source must the judicial representative come to have knowledge about the represented group? Second, what must the content of the judicial representative’s knowledge be? It is a commonly held view that one ought not be a representative for a group unless one is oneself a member of that group or shares characteristics in common with the members of the group that are relevant to the purpose of the representation. I call this the demand for similitude.40 Often, this thesis is defended on epistemic grounds. So the view goes: to be a good representative for a group, one must know what it is like to be a member of that group. One can know what it is like to be a member of a group only if one is oneself a member of that group or shares 40

Salkin, The Limits of Similitude and Deference, supra note 9; Salkin, Not Just Speaking for Ourselves, supra note 2. For other discussions of this principle and similar principles, see, for example, Jane Mansbridge, Should Blacks Represent Blacks and Women Represent Women? A Contingent “Yes,” 61 Journal of Politics 628; Michael Walzer, The Obligations of Oppressed Minorities, in OBLIGATIONS: ESSAYS ON DISOBEDIENCE, WAR, AND CITIZENSHIP 51 (Harvard University Press, 1970); Melissa S. Williams, VOICE, TRUST, AND MEMORY: MARGINALIZED GROUPS AND THE FAILINGS OF LIBERAL REPRESENTATION (Princeton, NJ: Princeton University Press), chap. 4, sec. IV, locs. 2088–2092 of 5215 and chap. 5, sec. III, locs. 2563–2570 of 5215, Kindle (1998).

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characteristics in common with the group’s members. So, to be a good representative for a group, one must oneself be a member of that group or share characteristics in common with the group’s members. Defenders of the demand for similitude tend to think that our own first-person experiences of our lives give us insights into our circumstances and the circumstances of others who are like us in relevant respects that other sources of information (for example, testimony or observation) simply could not. However, trenchant defenders of this view will have to commit themselves to the unsatisfying conclusion that, in certain representative contexts (for instance, judicial representation), some groups cannot receive good representation because the demand for similitude simply cannot be satisfied.41 It is quite reasonable to think that, often, our first-person experiences of our own lives give us insights into both our own circumstances and, in some cases, the circumstances of others who are like us in relevant respects. And perhaps it is the case that, with respect to certain insights, first-person experience is a sine qua non of achieving those particular insights. But it does not follow from the fact that some insights are best or only achieved through first-person experience that all insights can only be arrived at in that way. Some groups will have no members on the bench. This means that there will be no members of the judiciary who have first-person experience of what it is like for members of those groups. For defenders of the demand for similitude, this means that such groups could have no good judicial representatives. That can be an unsatisfying result if one is persuaded that there is something independently valuable to judicial representation. If we think there is independent value to judicial representation and acknowledge that some groups will have no members on the bench, then we must allow that first-person experience cannot be a requirement of being a good judicial representative. When the judicial representative is not a member of the represented group (as Justice Marshall is not a severely intellectually disabled person), the source of the information will have to be third-personal: expert testimony, the record of the case, the attestations of the lawyers who provide formal legal representation to the members of the group, independent research, or another source. Now, the second question: what precisely is it that the judicial representative must know about the represented group’s circumstances to count as a good judicial representative? How demanding is the knowledge requirement? Though it is difficult to make a general statement as to how much or what sorts of information the judicial representative will need to know about the represented group in order to count as a good judicial representative for that group, the following relevance requirement can serve as a starting point: to be a good judicial representative for a represented group in a given case, the representative must have an understanding 41

Elsewhere, I argue that we ought to reject the demand for similitude and instead endorse a more modest principle, the preference for similitude. See Salkin, The Limits of Similitude and Deference, supra note 9; Salkin, Not Just Speaking for Ourselves, supra note 2.

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of the features of the represented group’s members’ circumstances that are relevant to the purpose of the representation in that case. Return to the example of Cleburne. What must Justice Marshall know in order to be a good judicial representative of the severely intellectually disabled in a case that concerns housing discrimination against the severely intellectually disabled? He must know, for instance, what sorts of distinct forms of discrimination have been faced by the severely intellectually disabled, as Cleburne is a case concerning the application of the Equal Protection Clause. Justice Marshall evidences such knowledge when he discusses “the history of discrimination against the retarded and its continuing legacy.”42 So, too, must Justice Marshall have a sense of who falls within the ambit of the group the severely intellectually disabled – not knowing, of course, each numerically individual person who is so counted, but at least knowing that there is great variety among the persons so categorized and in virtue of what they may be so categorized. Justice Marshall gives evidence of his knowledge of the diversity among members of this group when, for instance, he agrees with the Court that “all retarded individuals cannot be grouped together as the ‘feebleminded’ and deemed presumptively unfit to live in a community” and acknowledges “variations in individual ability” among members of the group.43 And, as Cleburne is a case concerning the housing needs of the severely intellectually disabled, the judicial representative of the severely intellectually disabled will need to know something about this, too. As discussed above, Justice Marshall shows understanding of these circumstances.44 Of course, what a judicial representative must know about those for whom they speak will be a highly context-dependent matter. What must be known depends on what is relevant to the instant case. That this is so should lead us to once more question the aptness of the demand for similitude.45 If it turns out that the kind of representation that a given group requires could be carried out by anyone who was able to acquire the relevant knowledge and the relevant knowledge is of a type that can be acquired by means other than first-person experience, then it is not clear why one would want to limit the pool of potential representatives to only those parties that could have first-person experience of the circumstances of the represented group’s members. Let me be clear: I do not deny that there may be other important values that are upheld by either preferring or insisting on representation by parties who are members of the represented group or who are at least group-adjacent.46 42 43 44 45

46

Cleburne, 473 U.S. at 473. Id. at 455–56. Supra note 38. Recall the demand for similitude: One ought not be a representative for a group unless one is oneself a member of that group or shares characteristics in common with members of the group that are relevant to the purpose of the representation. By group-adjacent, I mean relevantly similar to the members of the group in identity, experience, or social position. See Salkin, Informal Political Representation, supra note 2; Salkin, Not Just Speaking for Ourselves, supra note 2.

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What I am claiming here is rather more modest: First, if we are going to advance normative principles that limit the pool of potential representatives, we have to have good reasons for doing so. It is not obvious that there are good reasons for always limiting the pool of potential representatives to those who have first-person experience of the circumstances of the represented group’s members. Second, in contexts where no group member could be a representative – as is the case for the severely intellectually disabled with respect to judicial representation – there are good reasons to favor judicial representation by people who are not members of the represented group. IV. REPRESENTING THE POLITICALLY DISEMPOWERED

Cleburne v. Cleburne Living Center and, in particular, Justice Marshall’s partial dissent in that case, serves as a lens on judicial representation – a practice in which a member of the judiciary speaks or acts on behalf of a group whose members are before that judiciary in a particular case. Cleburne brings out a perennial concern about representation: whether those who are not themselves members of a group may serve as good representatives for that group. If, contra the Cleburne majority, we find it plausible that the severely intellectually disabled are in fact “politically powerless”47 or at least significantly disempowered by ongoing discrimination and stigma, then it is not hard to feel the force of the claim that a judicial representative may do good for the group by giving voice from the bench to group members’ circumstances, values, interests, preferences, desires, or perspectives. But the good that judicial representation may do for the severely intellectually disabled or other politically disempowered groups must be weighed against serious, though not insurmountable, concerns as to whether a member of the judiciary could adequately represent a group of which they are not a member.

47

Cleburne, 473 U.S. at 445.

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Introduction to Part VI William P. Alford

The four chapters in this part, each in its own way, raise and begin to propose answers to the enormously challenging question of society’s responsibilities toward persons with disabilities when it comes to the provision of healthcare. Although all four are one in recognizing and documenting the all too abundant and profound ways in which persons with disabilities are disadvantaged (many of which are not obvious to persons whose lives are not touched by disability), they differ markedly in their proposals to rectify these problems. In their chapters, Govind Persad and Nir Eyal ground their positive proposals on a clear acknowledgment of how major methods for setting healthcare priorities have long discriminated against persons with disabilities. Persad’s focus in Chapter 19, “The Pathways Approach to Priority-Setting: Considering Quality of Life While Being Fair to Individuals with Disabilities,” is the so-called quality-adjusted lifeyears approach (QALYs) which, as he indicates, scholars have determined treats persons with disabilities as having a lower quality of life than others and, hence, accords them lower priority in receiving scarce resources, such as transplantable organs. Eyal’s target in Chapter 20, “Measuring Health-State Utility via Cured Patients,” is adaptation – a shorthand for determining how individuals have adapted to their disabilities that also can have major implications for the allocation of resources. Each of the two principal methods for evaluating adaptations – that of the general public and/or health professionals and that of persons with disabilities – has limitations with potential baleful consequences. “People who have never experienced the relevant health state,” writes Eyal “assume that it is unbearable, but the reality is far more nuanced;” people who are in the health state in question may have adjusted to it for what may be complex psychological reasons in a manner that might understate the impact it has had on their life. The other two chapters hone in on even more particular dimensions of what it means to have a disability in the twenty-first century and, in so doing, further illustrate the difficulty of addressing healthcare disparities. Chapter 17, “Can We Universally Accommodate Mental Health and Should We? A Systematic Review of 223 Downloaded from https://www.cambridge.org/core. University of Birmingham, on 21 Jul 2020 at 20:12:13, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108622851.024

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the Evidence and Ethical Analysis,” by Nathaniel Z. Counts, C. Taylor Poor, Julie Erickson, Thomas Hart, and Kelly A. Davis draws on a review of 3,593 articles to point out the ways in which mental health disability has (or, more often, has not) been accommodated in the United States, notwithstanding the Americans with Disabilities Act (ADA). And in Chapter 18, “Algorithmic Disability Discrimination,” Mason Marks, with foresight, sketches the ways in which artificial intelligence (AI), while in some respects working to the benefit of persons with a disability, is and will draw on an array of personal data (some of it not explicitly about health as such) to potentially make available to insurers and others information about current or possible future disability that may undercut some of the protections of the ADA, the Health Information Portability and Accountability Act (HIPAA), the Fair Housing Act, and other legislation. There are no simple or complete solutions to these profound challenges. The “social model” of disability championed by scholars and activists is an improvement on the previously dominant “medical model,” which saw disability as a product of a person’s medical condition and so, at least implicitly, lodged responsibility for addressing it on the person with a disability. By understanding the disadvantages individuals with a disability experience as owing, at least in part, to the choices a society has made (e.g., why not construct buildings with universal access in mind), the social model has the potential both to foster destigmatization (in the sense that the “shortcoming” is that of society rather than the individual) and to begin a conversation about the concrete measures society will undertake to address its failures. Yet, for all its noble intentions, as Persad points out (drawing on the work of both Weisbach and Samaha), the social model, as developed thus far, does not speak sufficiently to the tough choices in a world of limited resources that will likely need to be made between competing claimants, whether they be persons with a disability and persons disadvantaged in other ways such as race or poverty (with, of course, many people crossing these and other categories) or between persons with different types of disabilities. Each Chapter aspires to suggest a way forward in addressing the profound health disparities facing persons with a disability. Persad advances what he terms a “pathways approach to priority-setting” that would seek to improve on the social model by distinguishing between different “pathways to [the] disadvantage” that persons with a disability experience. He would focus societal resources on remediating the effects of those pathways to the disadvantages that are the result of unjust discrimination against persons with disabilities, while arguing that “unavoidable and unjust-to-prevent disadvantages” or “privately imposed disadvantage” (so long as it is not further enshrined by the state) need not be remediated, even if the failure to do so complicates the lives of persons with disabilities. Persad has a point in acknowledging that some forms of disability, such as a persistent vegetative state, may resist remediation and that limiting some forms of private association (such as, he suggests, choices in fellow congregants or in dating) may disadvantage persons with disabilities and even be unethical without necessarily being illegal. Thus, he argues, such disabilities need not be or perhaps Downloaded from https://www.cambridge.org/core. University of Birmingham, on 21 Jul 2020 at 20:12:13, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108622851.024

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should not be remediated by the state. That said, at least in the abbreviated form presented in this article, the pathways approach would seem to present many challenges in operationalization beyond those he identifies, not the least of which include identifying who gets to make these decisions, how much of the extent world we take as essentially given (i.e., disabilities that would have been seen as permanent a decade ago may in some instances no longer be so, given advances in technology), and that of the “slippery slope” (i.e., if society does not take responsibility for those in a persistent vegetative state, for example, because resources are tight today, what is to prevent that argument being extended to cover less severe but still profound disabilities tomorrow, not to mention the potentially corrosive effect that such an approach might have on us as a society). Eyal’s way to address the biases inherent in current approaches to measuring adaptations (which rely chiefly on the views of the general public and/or health professionals or reliance on persons with a disability) is to focus instead on persons who have had, but no longer have, a disability. While there is a cleverness to this, one wonders about the extent to which one can find a pool of individuals who would qualify for this category and how, in their absence with respect to some disabilities, one would appropriately extrapolate from other disabilities. This would be in addition to challenges that Eyal identifies as “recall bias” and “investment bias” on the part of persons who have recovered from an illness or who no longer have a disability. The chapter by Counts et al. with its survey of thousands of prior studies identifies “categories of interventions . . . [that] provide a series of discrete, empirically founded modifications that could be made to reduce the disability that comes from difference in mental health.” These interventions, to be sure, seem focused upon milder forms of mental health disability. Marks’ Chapter, in addition to drawing needed attention to the ways in which AI may extract disability and health-related data from sources not explicitly about disability or health, seeks to redress these problems by calling for amendment of the ADA and HIPAA, the implementation of more robust data protection laws in the United States, and the establishment of “fiduciary duties for companies that mine emergent medical data.” All four chapters are to be commended for identifying health disparities persons with disabilities face and boldly suggesting creative ways to address them.

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17 Can We Universally Accommodate Mental Health and Should We? A Systematic Review of the Evidence and Ethical Analysis Nathaniel Z. Counts, C. Taylor Poor, Julie Erickson, Thomas Hart, and Kelly A. Davis1

The social model of disability was implemented in the United States partially through the Americans with Disabilities Act (ADA), and most notably through certain universal accommodations2 for physical disabilities. The social model has also been applied to mental health, but the ADA did not provide for universal accommodations in mental health. In this Chapter, the authors conduct a systematic review of PubMed and PsycARTICLES to identify evidence for potential universal accommodations in mental health and discuss the policy and ethical considerations of implementing universal accommodations in mental health. I. BACKGROUND

The social model of disability emerged in the 1970s as a powerful advocacy tool.3 In contrast to the prevailing medical model, which viewed disability as a defect to be remediated through individualized intervention, the social model argues that an individual’s difference only becomes a disability because of the decisions made within a society that limit that individual’s ability to equitably participate. This new paradigm invigorated the disability rights movement and created a new language for asserting the rights of individuals with disabilities.4 Despite its political significance, the social model has been heavily critiqued.5 One criticism is that the model does not function well as a policy-making 1 2

3 4 5

The authors would like to thank Paul Gionfriddo and Mary Giliberti for their comments on previous drafts. Universal accommodations (or modifications) are changes to the built environment or institutional policies that make accommodations immediately available to individuals with disabilities, without having to formally request them. See Michael Oliver, Understanding Disability: From Theory to Practice 30–31 (2nd ed. 2009). See id. at 31–32. See, for example, Tom Shakespeare, Critiquing the Social Model, in Disability and Equity Law 69–81 (Elizabeth F. Emens & Michael Ashley Stein eds., 2nd ed. 2017).

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framework.6 The social model does not specify to what extent a society must invest in adapting to different needs, especially when resources are zero-sum with other public goods. Without a systematic method of dealing with cost–benefit trade-offs, the model faces challenges in directing policy. Disability law in the United States offers one possible method of navigating the cost– benefit trade-offs in the social model.7 The requirement of “reasonable accommodations” and its variants in the ADA obligate certain public or open-to-the-public institutions to modify aspects of their built or policy environment to ensure that individuals with disabilities can equitably access the core services, to the extent that these accommodations do not pose an “undue hardship” on the institutions or extend access beyond what is considered the essential service being offered.8 Some reasonable accommodations are universal, such as requirements that certain buildings open to the public meet guidelines for physical accessibility, while other reasonable accommodations must be made available on request, such as making sign language interpreter services available.9 If an accommodation is considered an undue hardship, it falls to the individual seeking accommodation to find some further individualized intervention at his or her own cost – or remain unaccommodated and therefore unable to participate. Thus, American disability law offers a cost–benefit ratio to determine when institutions are required to remove barriers that result from disabilities. The social model of disability and the ADA’s cost–benefit analysis also apply to mental health.10 Unlike physical disabilities that may rely on physiological assessment, mental health conditions are generally diagnosed based on an individual’s presentation of distress or functional limitation11 – that is, based on an individual’s experience of disability, in line with the social model12 – and the ADA includes most mental health diagnoses under its definition of disability.13 These limitations may also be socially constructed. For example, some of the behaviors associated with 6 7

8

9

10

11

12

13

See Adam M. Samaha, What Good Is the Social Model of Disability?, 74 U. Chi. L. Rev. 1251 (2007). See Richard K. Scotch, Models of Disability and the Americans with Disabilities Act, 21 Berkeley J. Emp. & Lab. L. 213, 215–16 (2000). See Mark C. Weber, Unreasonable Accommodations and Due Hardship, 62 Fla. L. Rev. 1119, 1121–24 (2010). See ADA Update: A Primer for State and Local Governments, U.S. Dept. Of Justice (last visited August 1, 2018), www.ada.gov/regs2010/titleII_2010/title_ii_primer.html. See Julie Mulvany, Disability, Impairment or Illness? The Relevance of the Social Model of Disability to the Study of Mental Disorder, 22 Soc. Health & Illness 582, 585 (2000). See also Nathaniel Counts, Accommodating One Another: Law and the Social Model of Mental Health, 25 Kan. J. L. & Pub. Pol’y 1 (2015). It is important to note, however, that some mental health condition diagnoses are not based on subjective distress or loss of functioning, but rather deviance, as is the case with hallucinations. Am. Psychiatric Ass’n, Diagnostic and Statistical Manual (5th ed. 2013). See id. at 20 (defining mental disorder as “a syndrome characterized by clinically significant disturbance in an individual’s cognition, emotion regulation, or behavior that reflects a dysfunction in the psychological, biological, or developmental processes underlying mental functioning”). See 42 U.S.C. § 12102. See also, RHJ Med. Ctr., Inc. v. City of DuBois, 754 F. Supp. 2d 723, 760 (W.D. Pa. 2010) (finding that opioid addiction is almost a disability per se and citing to the Diagnostic and Statistical Manual (DSM)-V for support that, as a mental disorder, it causes impairment of a major life activity).

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psychotic features are disabling due to societal expectations that limit certain behaviors in public spaces, and that even make certain kinds of nonharmful deviance illegal.14 American disability law does not, however, currently provide universal accommodations for mental health. Individuals with mental health conditions must be reasonably accommodated upon request based on need, but there are no general guidelines to ensure that institutions inherently accommodate individuals, as is the case with some other kinds of accessibility (e.g., design standards for buildings and special telephone lines for hearing impairments).15 Universal accommodations are important because they more fully realize the ethical objectives of the social model than individualized accommodations.16 In theory, when universal accommodations are in place, individuals with a difference can immediately and completely access institutions without needing to take additional steps to avoid their difference becoming a disability. Without universal accommodations in mental health, individuals with mental health conditions must request accommodation in every instance. This maintains the salience of their difference and the threat of it becoming a disability as they participate in community life, even if they are ultimately accommodated.17 By instituting universal accommodations for mental health, disability law could shift the burden off of individuals seeking to participate, producing a more equitable society in line with the social model of disability. At the time of the passage of the ADA, however, there was relatively little empirical literature on what it would mean to universally accommodate mental health needs. Mental health conditions, often referred to as “invisible disabilities,”18 do not lend themselves to the same degree of lay intuition in designing universal accommodations as physical disabilities – if nothing is physically blocking individuals with mental health conditions from accessing institutions but they are inaccessible nonetheless, how do we know what to change about the institutions without asking the individuals in each instance? The empirical literature on interventions to address mental health needs, which has grown precipitously over the past two decades, may offer an indication of what universal accommodations would be effective. Although very few studies have explicitly examined universal accommodations for mental health, studies that demonstrated effectiveness in reducing symptoms related to diagnosis of a mental health condition by modifying an institution may indicate possible areas for universal accommodations. If available research could indicate a path forward toward 14

15 16 17

18

See Leanne Dowse, Eileen Baldry, & Phillip Snoyman, Disabling Criminology: Conceptualising the Intersections of Critical Disability Studies and Critical Criminology for People with Mental Health and Cognitive Disabilities in the Criminal Justice System, 15 Aus. J. Hum. Rts. 29, 37–38 (2009). See generally, 42 U.S.C. § 12183. See Elizabeth F. Emens, Integrating Accommodation, 156 U. Pa. L. Rev. 839, 885 (2008). See, for example, Teresa L. Scheid, Stigma as a Barrier to Employment: Mental Disability and the Americans with Disabilities Act, 28 Int’l J. Law & Psychiatry 670 (2005). N. Ann Davis, Invisible Disability, 116 Ethics 153, 153–54 (2005).

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implementing universal accommodations for mental health conditions in American disability law, advocates would have new tools to promote equitable participation for the millions of Americans experiencing the disability that accompanies the difference of a mental health condition. This paper systematically reviews the published literature to identify relevant studies and discusses the relationship between the studies identified and the social model of disability and American disability law, with recommendations for future policy. II. METHODS

The authors conducted a systematic review of the peer-reviewed published literature using PubMed and PsycARTICLES up to February 28, 2018. The search terms focused on three domains potentially modifiable by accommodation: communities, including community development, urban planning, built environment, and other interventions related to social networks or norms; schools and preschools; and workplaces.19 Articles identified in each database were combined and duplicates removed. Inclusion criteria were selected to identify interventions consistent with universal accommodations and persuasive in an American policy context.20 Ultimately, studies were included that met the following criteria: (1) The article evaluated the effects of an intervention. Observational studies or theory papers were excluded. (2) The intervention modified the policies, practices, or procedures of an institution. Individualized interventions were excluded. Interventions that had multiple components, some of which were individualized, were also excluded if the effects of each component were not studied separately. (3) The article studied the general population. Studies designed for a subpopulation, such as older adults, a specific mental health condition, or a single ethnicity were excluded. While interventions for subpopulations should be part of the policy discussion, this paper explores opportunities to increase access for individuals with mental health conditions in general. Future research should study accommodations for subpopulations. (4) The studied intervention demonstrated a statistically significant effect on the prevalence of mental health conditions or on the scales commonly used to screen for them. Because the diagnostic criteria for most mental health conditions are based on impairments in functioning, impacts related to the diagnostic criteria indicate reductions in the disability that comes from difference. Constructs 19

20

See the Online Supplement for search terms used in PubMed. Mental Health America, Can We Universally Accommodate Mental Health and Should We Online Supplement (2018), www.mentalhealthamerica.net/can-we-universally-accommodate-mental-health-and-should-weonline-supplement. See, for example, 42 U.S.C. § 12102(b)(2)(A).

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included on this basis were limited to: overall rates of diagnosable mental health conditions, depression and anxiety symptoms, internalizing symptoms, externalizing symptoms (not including substance use or sexual risk-taking), attentional symptoms, hyperactivity, and disruptive behaviors (as another way of characterizing externalizing). Constructs related to mental health conditions but that are not used in screening could not be included, as it was difficult to make principled decisions about which were appropriate for inclusion. Constructs excluded on these grounds included, for example, stress coping and self-regulation. (5) The study took place in the United States in the past twenty years. To be credible in an American policy environment, the evidence for possible accommodations must relate to American institutions as they currently function. Mental health is also especially affected by social interactions and norms, and cultural differences may reduce applicability. (6) The article was not studying an intervention that could be better considered healthcare, including services provided by a clinician or other provider to prevent, diagnose, or treat a health condition.21 Such services fall more properly under the province of the Mental Health Parity and Addiction Equity Act of 2008 and related healthcare policy rather than the ADA.22 (7) The intervention had a psychosocial mechanism of action, rather than being targeted toward diet or fitness. While diet and fitness are key aspects of mental health promotion, diet and exercise should be the subject of future reviews. For those studies included in the review, the authors extracted: the institution modified; the intervention; and the primary outcome studied that made the article eligible for inclusion (e.g., statistically significant effects on mental health were included, but unrelated effects also studied were not). Studies identified were then classified based on how the intervention was delivered, grouping interventions into categories based on the extent of accommodation necessary to implement it. For example, all facilitated group-based interventions would be classified in the same category because they require similar levels of effort from the institution to be made available, even though the group-based interventions differ substantially in theoretical orientation and implementation details. III. RESULTS

The search identified 3,593 articles for possible inclusion. Of these 3,593 articles, 15 studies were deemed to meet the inclusion criteria, with 2 studies on communitylevel accommodations, 13 studies on school and preschool, and 0 studies on workplace. See the Online Supplemental Materials for the search flow chart, and see Table 17.1 for the studies that met the inclusion criteria. 21 22

See, for example, 42 U.S.C. § 1396d(a)(13)(A). See, for example, Pub. L. No. 110–343 (2008).

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table 17.1 Description of studies included in the review Study

Setting

Intervention

Primary outcomes

Stephanie M. Jones et al., A School-Randomized Clinical Trial of an Integrated SocialEmotional Learning and Literacy Intervention: Impacts After 1 School Year, 78 J. Consult. Clinical Psychol. 829 (2010). Conduct Problems Prevention Research Group, Initial Impact of the Fast Track Prevention Trial for Conduct Problems: II. Classroom Effects, 67 J. Consulting & Clin. Psychol. 648 (1999). Jane E. Gillham et al., SchoolBased Prevention of Depression and Anxiety Symptoms in Early Adolescence: A Pilot of a Parent Intervention Component, 21 Sch. Psychol. Q. 323 (2006). Wendy Pretz Helker and Dee C. Ray, Impact of Child Teacher Relationship Training on Teachers’ and Aides’ Use of RelationshipBuilding Skills and the Effects on Student Classroom Behavior, 18 Int. J. Play Therapy 70 (2009). Lea A. Theodore et al., A Comparative Study of Group Contingencies and Randomized Reinforcers to Reduce Disruptive Classroom Behavior, 19 Sch. Psychol. Q. 253 (2004).

School

Manualized SEL

Reduced depressive symptoms, aggression

School

Manualized SEL

Reduced hyperactive– disruptive behaviors, aggression

School

Manualized SEL and Reduced depressive symptoms, anxiety group-based symptoms intervention for parents

Preschool

Training teachers in classrooms management

Decreased externalizing behaviors

School

Training teachers in classrooms management

Decreased disruptive behaviors

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table 17.1 (continued) Study

Setting

Intervention

Joyce Buckner-Brown et al., Using the Community Readiness Model to Examine the Built and Social Environment: A Case Study of the High Point Neighborhood, Seattle, Washington, 2000–2010, 11 Preventing Chronic Disease E194 (2014). Walter S. Gilliam, Angela N. Maupin, and Chin R. Reyes, Early Childhood Mental Health Consultation: Results of a Statewide RandomControlled Evaluation, 55 J. Am. Acad. Child Adolescent Psychiatry 754 (2016). Sabina Low et al., Promoting Social-Emotional Competence: An Evaluation of the Elementary Version of Second Step®, 53 J. Sch. Psychol. 463 (2015). Clayton R. Cook et al., An Integrated Approach to Universal Prevention: Independent and Combined Effects of PBIS and SEL on Youths’ Mental Health, 30 Sch. Psychol. Q. 166 (2015). Stephanie M. Jones et al., Two-Year Impacts of a Universal School-Based Social-Emotional and Literacy Intervention: An Experiment in Translational Developmental Research, 82 Child Dev. 533 (2011).

Community Communityparticipatory development

Primary outcomes Fewer poor mental health days

Preschool

Access to mental Lower ratings of health consultation hyperactivity, restlessness, externalizing behaviors, problem behaviors, total problems

School

Manualized SEL

School

Manualized SEL and Reductions in externalizing and teacher training in internalizing classroom behaviors management

School

Manualized SEL

Improvements in social-emotional competence and behavior, disruptive behavior

Reduced depressive symptoms, improved attention skills and social competency

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table 17.1 (continued) Study

Setting

Intervention

Primary outcomes

Kimberly A. Schonert-Reichl et al., Enhancing Cognitive and Social-Emotional Development Through a Simple-to-Administer Mindfulness-Based School Program for Elementary School Children: A Randomized Controlled Trial, 51 Dev. Psychol. 52 (2015). Amanda P. Williford and Terri L. Shelton, Using Mental Health Consultation to Decrease Disruptive Behaviors in Preschoolers: Adapting an EmpiricallySupported Intervention, 49 J. Child Psychol. & Psychiatry 191 (2008). Robert L. Nix et al., The Randomized Controlled Trial of Head Start REDI: Sustained Effects on Developmental Trajectories of Social-Emotional Functioning, 84 J. Consulting & Clinical Psychol. 310 (2016). C. Cybele Raver et al., Targeting Children’s Behavior Problems in Preschool Classrooms: A Cluster-Randomized Controlled Trial, 77 J. Consult. Clinical Psychol. 302 (2009). Jan C. Semenza et al., Community-Initiated Urban Development: An Ecological Intervention, 84 J. Urb. Health 8 (2007).

School

Manualized SEL

Reduced depressive symptoms, increased peer acceptance and prosociality

School

Access to mental health consultation, group-based intervention for parents

Decreased disruptive behaviors

Preschool

Manualized SEL

Reduced aggressiveoppositional behavior, attention problems, and peer rejection; increased social competence

Preschool

Teacher training in classroom management

Reduced externalizing and internalizing behaviors

Community Communityparticipatory development

Reduced depressive symptoms, increased sense of community and expansion of social capital

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Interventions included: • Manualized social and emotional learning (SEL), which encompasses classroom interventions that follow a set curriculum to teach children social and emotional skills related to or derived from evidence-based therapies for mental health conditions; • Group-based interventions for parents, which encompasses interventions that help parents employ parenting techniques that reinforce relevant principles from evidence-based therapies for mental health conditions; • Training teachers in classroom management, which includes interventions where teachers implement set protocols for structuring student participation and responding to student behaviors in ways that reinforce relevant principles from evidence-based therapies for mental health conditions; • Mental health consultation, which encompasses approaches where a teacher communicates regularly or as needed with a mental health professional to promote evidence-based approaches to mental health needs in the classroom; • Community-participatory development, which includes interventions where community members with and without mental health conditions work together to make decisions about their community’s development. From the articles identified, the interventions could be placed in one of five categories, which are presented in Table 17.2, along with an example intervention in

table 17.2 Categories of interventions from studies included in the review Category

Example

Number of studies

Curricular interventions for children in schools Noncurricular classroom interventions for children in schools Mental health consultation for children in schools

Teaching SEL to all children in a classroom Implementing positive behavioral interventions and supports for all children in a classroom Making available a mental health professional to help teachers with mental health needs in the classroom Delivering a weekly after-school program to help parents promote their children’s healthy mental development Engaging communities in planning and implementation to facilitate social interactions and meet mental health needs

8

Group-based interventions for parents of school-aged children Participatory development models for communities

4

2

2

2

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each category and the number of studies from the review that fit into the category. Note that three studies fell into more than one category. The categories presented classify interventions based on the costs and benefits to be weighed in implementing them as accommodations. For example, although interventions delivered as part of a primary school curriculum differ dramatically, they all add content that will involve similar considerations for schools weighing whether to implement them as accommodations. Note that the actual cost for interventions in each category may have differed dramatically, such that one curricular intervention may cost $500 and another $2,000.23 However, these figures are likely to change with advancing implementation science,24 making the delivery method the most salient feature in determining the reasonableness of an accommodation. The five categories identified indicate different ways that the literature provides evidence for possible universal accommodations. Four of these categories apply to children in schools, suggesting that schools can: (1) modify curricula to ensure all children in the school have the skills to both participate and accommodate one another; (2) implement classroom policies on participation and behavior that promote equitable access for children with mental health needs; (3) provide teachers access to a mental health specialist to help the teacher appropriately structure the classroom for additional levels of need; and (4) make available group-based interventions for all interested parents to learn effective ways of structuring the home environment to accommodate mental health needs. While similar accommodations are likely possible and effective in the workplace as in the school, no studies ultimately met the inclusion criteria – many studies targeted stress or well-being rather than mental health symptoms, involved individualized or multicomponent strategies, or were conducted abroad. The fifth category indicates that communities can adopt policies that include community members in each step of the community development process, offering individuals with mental health conditions opportunities for structured social engagement that may reduce mental health symptomatology. No interventions directly related to the built environment met the inclusion criteria, as would be the case if there were studies testing the effects of different home or community layouts on mental health. Observational studies and some intervention studies are, however, suggestive of possible built environment universal accommodations available in this area.25

23

24 25

See Mary Jane Rotheram-Borus et al., Disruptive Innovations for Designing and Diffusing Evidence-Based Interventions, 67 Am. Psychol. 463, 468–70 (2012). See id. See, for example, Earle C. Chambers et al., The Association Between Apartment Layout and Depressive Symptomology among Hispanic/Latino Residents in Low-Income Housing: The AHOME Study, 95 J. Urb. Health 52 (2018).

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A. Risk of Bias Risk of bias was not assessed for the studies included, as they were aggregated into categories. Because of issues in the search strategy, the number of studies identified in any category does not necessarily indicate the weight of the evidence for that category of intervention. The authors were able to identify studies that met the inclusion criteria but were not returned by the search terms used. Inter-reviewer disagreement in applying the inclusion criteria was likely, so some articles may have been excluded that other reviewers would have included. Despite these issues, the impact on the categories used for analysis was likely minimal. For each of the categories, the authors were able to identify recent meta-analyses or systematic reviews on the topic, indicating that the categories extracted from the systematic review comport with understandings of intervention delivery methods from the broader literature.26 Other reviews of interventions in mental health did not indicate that any categories of intervention relevant to universal accommodation for mental health were omitted.27 IV. DISCUSSION

The review indicates potential social model approaches to mental health through universal accommodations that could be built into the ADA. The categories of interventions identified in the review represent five possible methods of modifying institutions to reduce the disability that came from difference as a result of the mismatch of the individual’s needs and the institution’s social environment. The review affirms that mental health conditions do not uniquely require individualized approaches to accommodate. Rather, universal accommodations could improve accessibility for individuals with mental health conditions in the same way they do for physical disabilities. Equitably addressing mental health under the ADA may require more than only implementing those interventions for which there are well-controlled studies in the literature as universal accommodations. As a result of historic underinvestment in mental health research,28 combined with the focus on individualized interventions among the vast majority of research that has been conducted, the published literature offered very few studies eligible for inclusion in this review. In physical health, the universal accommodation provisions of the ADA were not necessarily a result of 26

27

28

See, for example, Rebecca D. Taylor et al., Promoting Positive Youth Development Through School-Based Social and Emotional Learning Interventions: A Meta-Analysis of Follow-Up Effects, 88 Child Dev. 1156 (2017); Sarah Buchanan-Pascall et al., Systematic Review and Meta-analysis of Parent Group Interventions for Primary School Children Aged 4–12 Years with Externalizing and/or Internalizing Problems, 49 Child Psychiatry Hum. Dev. 244 (2018). See Irwin Sandler et al., Overview of Meta-Analyses of the Prevention of Mental Health, Substance Use and Conduct Problems, 10 Ann. Rev. Clinical Psychol. 243 (2014). See Shekhar Saxena et al., The 10/90 Divide in Mental Health Research: Trends Over a 10-Year Period, 188 Br. J. Psychiatry 81, 82 (2006).

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empirical studies on the precise effectiveness of each modification on the amount of disability that results from difference, and a higher standard should not be applied to mental health. Universal accommodations for mental health in the ADA could take theory-backed and empirically supported interventions, and the review indicates what some of those potential approaches could be: • The two classroom categories of interventions work principally by adapting therapeutic techniques that have been effective in individual or small groupbased interventions for application across a larger group through the policies and practices of an institution. Similar effects may be realized if relevant therapeutic techniques were adapted to other settings, like the workplace. • Mental health consultation is effective by providing a specialist to problemsolve issues of accessibility for children with mental health conditions and supporting teachers in testing new approaches. These same principles could be applied to other settings, like the workplace, through similar specialist consultation models. • The community-participatory development interventions offer structured, positive, and purposeful interactions that explicitly focus on inclusivity of potentially marginalized voices, in line with the research on the relationship between social interaction and mental health.29 Similar strategies could be applied in more ways and in more settings to promote accessibility. To act on available evidence, universal accommodations in mental health can initially allow institutions a great deal of flexibility and support a variety of approaches – both empirically validated and theory-backed – with updates to the rules as the existing accommodations are evaluated and new studies are conducted. The ADA is well-designed for iterative refinement, as universal accommodations are largely specified through regulation, with opportunities for systematic public input by impacted individuals and institutions, and can be updated as new evidence arises – especially as opportunities to meet the needs of diverse populations become clearer.30 And this was the approach when the ADA was first passed; universal physical accommodations seemed premature or unworkably complex to some, but implementation provided a path that engaged both institutions and individuals with disabilities to steadily advance reform.31 The opportunity for gradual and iterative implementation also indicates that universal accommodations in mental health could be implemented in a way that 29

30 31

See, for example, Oliver Su¨ndermann, Juliana Onwumere et al., Social Networks and Support in First-Episode Psychosis: Exploring the Role of Loneliness and Anxiety, 49 Soc. Psychiatry & Psychiatric Epidemiology 359, 359 (2014). See, for example, 42 U.S.C. § 12186. See Miranda Oshige McGowan, Reconsidering the Americans with Disabilities Act, 35 Ga. L. Rev. 27, 31–33 (2000).

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would be “reasonable” and not an “undue hardship” under the ADA. Although the interventions reviewed differ widely in cost to implement, the degree of implementation for many could be titrated based on the institution’s resources. For example, schools could take a number of steps to provide parents with group-based interventions – they could offer physical space after school where the intervention could take place, or they could actually facilitate the matching of parents with professionals or paraprofessionals and volunteers to form groups. Further, the high prevalence of mental health conditions means that many individuals would be accommodated, making accommodations more reasonable.32 This is especially the case because mental health conditions are expensive for many institutions, and the cost of not accommodating – which could include costs related to productivity losses (for teachers in the school-based interventions), absenteeism, justice involvement, and additional special education or healthcare utilization – is high enough that many of these interventions may actually be cost-saving in the long run.33 Notably, in 2002, unaddressed mental health conditions led to an estimated $193.2 billion in annual lost work earnings and a $317 billion estimated total annual economic burden,34 and the disability associated with mental health has increased since then.35 The exorbitant costs, both direct and indirect, of failing to meet mental health needs indicate the potential for significant financial returns from effective accommodations. The opportunity to implement universal accommodations in mental health offers a path toward building a more accessible, inclusive, and equitable society, all while avoiding “undue hardship” for existing institutions. Universal accommodations will likely not be able to eliminate all of the disability that comes from difference in mental health, but fully implementing the ideals of the social model and the ADA offers a profound adjustment to our society’s relationship to mental health – disability associated with difference in mental health is eliminated to the maximum extent possible as individuals interact with institutions, such that only those with remaining disability would need to seek out individualized accommodations, and then only those with still yet remaining disability would need additional clinical intervention. The universal accommodations ultimately allow for a truer accessibility, in which difference is not reinforced by institutions and communities enjoy the greatest possible opportunities for inclusive and equitable participation and contribution of their members. 32 33

34

35

See, for example, N.M. Ass’n for Retarded Citizens v. New Mexico, 678 F.2d 847, 854 (10th Cir. 1982). Clive Belfield et al., The Economic Value of Social and Emotional Learning, 6 J. Benefit-Cost Analysis 508 (2015). See Thomas R. Insel, Assessing the Economic Costs of Serious Mental Illness, 165 Am. J. Psychiatry 663, 663 (2008). See M. J. Friedrich, Depression Is the Leading Cause of Disability Around the World, 317 J. Am. Med. Ass’n. 1517, 1517 (2017).

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A. Limitations In this study, the authors included only studies for which the intervention was directly translatable into a possible accommodation. Application of quantitative methods from implementation science could have indicated which components of multicomponent interventions were effective, and allowed for more studies to be included with stronger inferences about which modifications specifically reduced disability.36 A theory of how different outcomes in mental health, social functioning, and well-being relate to one another and the social model also could have allowed more studies to be integrated that examined outcomes other than effects on mental health symptoms and diagnoses. The use of such additional methods may have raised entirely new categories of universal accommodations. A systematic review can only compile existing research. Notably, the dominant tension in mental health over the past several decades has not been between the social and the medical models, but between the recovery and the medical models.37 While both the recovery model and the social model emphasize equitable participation in community life as a goal, they differ in their methods. The recovery model focuses on shared decision-making and self-direction as a means to maximize participation in community life rather than remediating individual deficiencies as in the medical model, but the interventions may be individualized.38 Because of the dominance of the recovery model over the social model in mental health, there has been less interest in studying interventions that solely modify the environment rather than the individual and, as such, there is currently little empirical literature devoted to studying possible universal accommodations in mental health. Additional research should examine more accommodations across more settings, such as workplaces and the built environment. Researchers should prioritize studying possible universal accommodations as another avenue for promoting equity for individuals with mental health conditions. V. CONCLUSION

This paper offers a systematic review of current research on interventions that could function as universal accommodations for mental health, that are compatible with American disability law, and that advance the social model of disability. While additional research on universal accommodations is needed, the categories of interventions identified in the review provide a series of discrete, empirically 36

37

38

See Tashia Abry et al., Are All Program Elements Created Equal? Relations Between Specific Social and Emotional Learning Components and Teacher-Student Classroom Interaction Quality, 18 Prevention Sci. 193 (2017). See William A. Anthony, Recovery from Mental Illness: The Guiding Vision of the Mental Health Service System in the 1990s, 16 Psychiatric Rehab. J. 11 (1993). See Mike Slade et al., Uses and Abuses of Recovery: Implementing Recovery-Oriented Practices in Mental Health Systems, 13 World Psychiatry 12, 13 (2014).

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founded modifications that could be made to reduce the disability that comes from difference in mental health. Applying these interventions across schools, workplaces, and communities could offer meaningful access to millions of individuals with mental health conditions, and the “reasonable accommodations” framework of the ADA provides a politically acceptable way to navigate cost–benefit trade-offs throughout implementation.

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18 Algorithmic Disability Discrimination Mason Marks

In the United States, a patchwork of privacy and antidiscrimination laws protects the rights of people with disabilities: the Health Information Portability and Accountability Act (HIPAA) protects disability-related patient data as it flows from one healthcare provider to another. If the information leaks out of the healthcare system, laws such as the Americans with Disabilities Act (ADA) and the Fair Housing Act (FHA) can contain it and mitigate its effects. This patchwork of laws often succeeds in preventing disability discrimination. However, emerging technologies such as artificial intelligence (AI) are rendering it ineffective. This chapter explains how AI disrupts the traditional flow of disability-related data to promote algorithmic disability discrimination. In this paper, “disability discrimination” refers to treating people with disabilities differently, in ways that demean or exploit them.1 It can be distinguished from socially acceptable forms of discrimination, such as prohibiting people under the age of twenty-one from drinking alcohol or collecting higher auto insurance premiums from people with histories of accidents. Those types of discrimination do not treat people as though they have lesser worth, and they promote safe and responsible behavior. In contrast, algorithmic disability discrimination treats people with disabilities as lesser humans, unworthy of equal participation in society or of making decisions for themselves. In the past, disability-related information flowed between people with disabilities and their doctors, family members, and friends. However, AI-based tools, such as machine learning, allow corporations that collect and analyze consumer data to bypass the laws protecting people with disabilities and infer consumers’ disabilities without their knowledge or consent.2 When people make purchases, browse the Internet, or post on social media, they leave behind trails of digital traces that reflect where they have been and what they have done.3 Single traces do not reveal much information. However, companies 1 2

3

See Deborah Hellman, When Is Discrimination Wrong? 34 (2008). Mason Marks, Emergent Medical Data, Petrie-Flom Ctr.: Bill of Health (October 11, 2017), blog .petrieflom.law.harvard.edu/2017/10/11/emergent-medical-data/. See Jack M. Balkin, Free Speech in the Algorithmic Society: Big Data, Private Governance, and New School Speech Regulation, 51 U.C. Davis L. Rev. 1149, 1155 (2018); Elizabeth D. De Armond, To Cloak the Within: Protecting Employees from Personality Testing, 61 DePaul L. Rev. 1129, 1136–37 (2012).

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aggregate and analyze them using AI to reveal sensitive data about people’s physical and mental health.4 I have previously described this process as mining for “emergent medical data” (EMD) because digital traces have emergent properties; when analyzed by machine learning, they reveal information that is greater than the sum of their parts.5 I. HOW EMD MINING AFFECTS PEOPLE WITH DISABILITIES AND WHY US LAWS FAIL TO PROTECT THEM

Many people with disabilities rely on technology to communicate, socialize, and navigate physical and virtual environments. For example, people with vision impairments use assistive devices to identify objects while walking.6 People with mobility impairments use voice-recognition software to access the Internet and draft emails.7 Tom Gruber, a cocreator of Apple’s AI-powered personal assistant Siri, claims his invention helps disabled people engage with society in ways that nondisabled people take for granted.8 These assistive technologies can increase the abilities of people with physical and mental impairments. However, they also serve as continuous sources of EMD, putting people with disabilities at increased risk for discrimination. Imagine an individual named John who is paraplegic and uses a wheelchair. John may never have disclosed his disability publicly. Yet algorithms can infer his disability through his digital traces. After profiling John and sorting him into the category “wheelchair user,” marketing algorithms may serve him targeted ads designed to appeal to people in that category, such as ads for wheelchairs and related accessories. This example seems benign, yet there is a darker side to this type of categorization. On August 13, 2018, the US Department of Housing and Urban Development filed a formal complaint alleging that Facebook engaged in discrimination against people with disabilities, in violation of the FHA, by allowing advertisers to exclude people with disabilities from receiving housing-related advertisements.9 According to the complaint, Facebook enabled advertisers to prevent users from seeing ads if the users had been sorted into categories such as interested in “assistance dog” and interested in “deaf culture.”10 Similarly, John’s 4

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See Tasha Glenn & Scott Monteith, Privacy in the Digital World: Medical and Health Data Outside of HIPAA Protections, 16 Current Psychiatry Rep. 494, 497 (2014). Marks, supra note 2. Emily Chung, New Smart Beacons Open Doors for the Blind in Toronto Neighborhood, CBC News (September 19, 2017), www.cbc.ca/news/technology/blind-ibeacon-iphone-app-stores-1.4294970. Issie Lapowski, A Touch Free Smartphone the Disabled Can Control with Their Heads, Wired (November 11, 2014), www.wired.com/2014/11/sesame-enable/. Tom Gruber, How AI Can Enhance Our Memory, Work, and Social Lives, TED (April 2017) www.ted.com/talks/tom_gruber_how_ai_can_enhance_our_memory_work_and_social_lives (explaining how one blind and quadriplegic person uses Apple’s Siri to “manage his own social life”). Housing Discrimination Complaint, U.S. Department of Housing and Urban Development, www.hud.gov/sites/dfiles/PIH/documents/HUD_01-18-0323_Complaint.pdf?ftag=MSFd61514f (last visited August 24, 2018). Id. at ¶7.

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categorization as a wheelchair user could be used to exclude him from receiving ads for employment, housing, and other resources. In addition to violating antidiscrimination laws such as the FHA, excluding people with disabilities from receiving these ads strips them of agency and excludes them from participating fully in society. Targeted advertising can also harm people with disabilities more directly. Consider an individual with an eating disorder such as anorexia. Profiling this consumer and serving him customized ads for products such as weight loss pills, laxatives, and stimulants can exacerbate his condition and increase his degree of disability. Targeting ads to consumers based on their unique susceptibilities is called vulnerability-based marketing.11 It exploits people’s physical or mental sensitivities and reinforces patterns of unhealthy behavior. Other examples of vulnerability-based targeted advertising include identifying people with chronic pain or substance use disorders and targeting them with ads for illegal opioids.12 Disability-related EMD is also used in a growing industry called “people analytics” that scores and ranks individuals. Scores are used in a variety of sectors including employment, lending, insurance, education, and public administration. The Chinese government is implementing a social credit system that incorporates data from all spheres of people’s lives. It is intended to reflect people’s trustworthiness, and it governs access to housing, employment, healthcare, transportation, and other resources including potential romantic partners.13 Though the Chinese system may seem shocking to Western societies, elements of the system have already been implemented by American companies.14 Hewlett-Packard pioneered a score called “flight risk” to predict when new or existing employees will quit.15 The score incorporates data on divorce, serious illness, and the frequency and pattern of sick days used. If an employee becomes disabled and uses an increasing number of sick days for medical treatment, the trend will be incorporated into the employee’s flight risk score and could result in early termination. In a second example from human resources, Fortune 500 companies increasingly rely on AI-driven interview tools to rank job applicants. One company called HireVue provides software that analyzes applicants’ facial expressions, tone of voice, and word 11

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Frank Pasquale & Danielle Keats Citron, Promoting Innovation While Preventing Discrimination: Policy Goals for the Scored Society, 89 Wash. L. Rev. 1413, 1420 (2014). Bloomberg Gov’t, Transcript of Mark Zuckerberg’s Senate Hearing, Wash. Post (April 10, 2018), www .washingtonpost.com/news/the-switch/wp/2018/04/10/transcript-of-mark-zuckerbergs-senate-hearing/? noredirect=on&utm_term=.16c17aa8f6bc. Charles Rollet, The Odd Reality of Life Under China’s All-Seeing Credit Score System, Wired (June 5, 2018), www.wired.co.uk/article/china-social-credit. See Tyler Grant, The West Could be Closer to China’s System of “Social Credit Scoring” than You Think, The Hill (May 7, 2018), thehill.com/opinion/technology/386524-the-west-could-be-closer-tochinas-system-of-social-credit-scoring-than. Eric Siegel, Predictive Analytics: The Power to Predict Who Will Click, Buy, Lie, or Die, Revised and Updated 47 (2016).

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choice to compare them against the “ideal candidate” in various fields.16 If people with mobility or communication impairments are interviewed by these automated systems, their impairments may negatively impact their rankings compared to other applicants. Disabled job candidates could be screened out of the application process before their materials reach human reviewers. The above examples may violate the ADA. Title I of the Act prohibits employers from discriminating based on disabilities. However, it puts the burden on employees to identify instances of disability discrimination and report them to the Equal Employment Opportunity Commission (EEOC). An employee cannot file a lawsuit against an employer unless the EEOC has had a chance to investigate the claim. Yet instances of algorithmic disability discrimination may be difficult for employees and job applicants to detect. They are often unaware that their performance on the job or in an interview is being analyzed by algorithms. Moreover, the algorithms used to mine EMD and rank employees and job applicants are often maintained as trade secrets, the confidential intellectual property of the companies that develop and use them. Even if the code of these algorithms was released to the public, their logic is often opaque and may be inscrutable even to the engineers who design them. Because automated employment and hiring-related decisions are hidden from employees and job applicants, yet Title I requires them to identify instances of discrimination, Title I is inadequate to prevent algorithmic disability discrimination. Title III of the ADA prohibits discrimination against people with disabilities in places of public accommodation, which include private businesses that are generally open to the public. Title III lists twelve categories of businesses that provide public accommodations under the ADA such as hotels, restaurants, and movie theaters. Title III could be used to prevent algorithmic disability discrimination against people using social media platforms and other websites. However, it is unclear whether these companies qualify as places of public accommodation because the categories listed in Title III do not include online companies, and historically, places of public accommodation were brick-and-mortar business. Many online businesses do not fit that mold, and courts have been divided on whether they qualify.17 In National Federation of the Blind v. Scribd Inc.,18 an internet-based document repository was deemed a place of public accommodation. The US District Court for the District of Vermont reasoned it would not make sense for people to be treated differently by the law if they bought an insurance plan 16

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Richard Feloni, I Tried the Software That Uses AI to Scan Job Applicants for Companies Before Meeting Them – and It’s Not as Creepy as it Sounds, Business Insider (August 23, 2017), www.businessinsider.com/hirevue-ai-powered-job-interview-platform-2017-8. Nancy Leong & Aaron Belzer, The New Public Accommodations: Race Discrimination in the Platform Economy, 105 Geo. L.J. 1271, 1300 (2017). 97 F. Supp. 3d 565 (D. Vt. 2015).

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from a brick-and-mortar store or bought the same plan from an online vendor.19 However, in Cullen v. Netflix,20 the US District Court for the Northern District of California disagreed, finding that because Netflix’s services are not connected to any “actual physical place,” Netflix is not subject to the ADA.21 In National Association of the Deaf v. Netflix,22 the US District Court of the District of Massachusetts reached the opposite conclusion.23 The court said excluding companies that deliver services online from the definition of places of public accommodation would frustrate Congress’s intent that people with disabilities “fully enjoy the goods, services, privileges and advantages, available indiscriminately to other members of the general public.”24 Until the debate over whether internet businesses provide public accommodations is resolved, companies that operate within this legal grey area may lack sufficient incentives to abstain from algorithmic disability discrimination. Like the ADA, HIPAA has limitations when it comes to preventing algorithmic discrimination. It applies only to disability-related information held by traditional healthcare entities and their business associates.25 It does not apply to the growing variety of smartphone apps and websites that collect our digital traces or the algorithms that transform them into disability-related information.26 The legislative history of HIPAA suggests its primary purpose is to protect people’s rights by controlling the inappropriate use of their health information.27 It includes quotes by jurists, writers, and philosophers on the importance of maintaining privacy. According to Janna Malamud Smith, “If we continually, gratuitously, reveal other people’s privacies, we harm them and ourselves, we undermine the richness of the personal life, and we fuel a social atmosphere of mutual exploitation.”28 The ability to mine EMD undermines assumptions on which HIPAA was based and expands the types of entities that have access to medical information. Before making recommendations to regulate algorithmic disability discrimination, I will explain why it is important to protect the privacy and autonomy of people with disabilities by restricting the flow of their personal data. 19 20 21 22 23 24 25

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Id. at 572–73. 880 F. Supp. 2d 1017 (N.D. Cal. 2012). Id. at 1023–24. 869 F. Supp. 2d 196 (D. Mass. 2012). Id. Id. at 200. Covered Entities and Business Associates, Dept. Health & Hum. Services (June 16, 2017), www.hhs.gov/hipaa/for-professionals/covered-entities/index.html. See Katherine Strandburg, Monitoring, Datafication, and Consent: Legal Approaches to Privacy in the Big Data Context, in Privacy, Big Data, and the Public Good 5 (Julia Lane et al. eds., 2014). See Standards for Privacy of Individually Identifiable Health Information, 65 Fed. Reg. 82461 (December 28, 2000) (to be codified at 45 C.F.R. pts. 160, 164). Id. at 82464.

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II. WHY WORRY ABOUT THE DISRUPTED FLOW OF DISABILITY-RELATED DATA?

In the twentieth century, great strides were made toward securing rights for people with disabilities, and the passage of the ADA is a landmark in this process.29 However, we are far from achieving full equality.30 To ensure that progress continues to be made, we must observe how emerging technologies affect people with disabilities. There is a growing trend to segment, score, and rank the population based on personal characteristics.31 EMD collected from disabled people can serve as a means of sorting them into categories that are assigned positive or negative weights before being used in automated decision-making. Negatively weighted categories can stigmatize disabled people and contribute to the narrative that disabilities are bad. There are ongoing debates about whether the differences between disabled and nondisabled people should be described as “mere differences” or “bad differences.”32 As we progress further into the Information Age, human decisionmakers are being replaced with software that will increasingly weigh in on this debate. By negatively weighting categories into which disabled people are sorted, algorithms may stigmatize disabled people and screen them out of life opportunities without considering their desires or qualifications. Thus, what may have been deemed mere differences by human decision-makers could be flagged as bad differences by algorithms. The disability literature describes two models that attempt to explain the origins of disabilities. The medical model frames mental and physical impairments as health problems requiring treatment. According to the model, disabilities result from the states of people’s bodies and minds, and the primary way to reduce their degree of disability is to correct physical and mental impairments. In contrast, according to the social model of disability, there is nothing inherently negative or disabling about having physical or mental impairments.33 It is within the context of society, where the physical surroundings and social environment shape the experiences of people with impairments, that people’s impairments become disabling and affect their participation in society.34 The social model has changed the way people with mental and physical impairments view themselves. Because it places the blame for 29

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Wyatt Massey, The ADA at 25: What’s Next for Disability Rights, CNN (July 24, 2015), www.cnn.com /2015/07/24/living/ada-25-anniversary-disability-rights-feat/index.html. Id. Danielle Keats Citron and Frank Pasquale, The Scored Society: Due Process for Automated Predictions, 89 Wash. L. Rev. 1, 2–3 (2014). See Elizabeth Barnes, Valuing Disability, Causing Disability, 125 Ethics 88 (2014); see also Vuko Andrie´ & Joachim Wu¨ndisch, Is It Bad to Be Disabled? Adjudicating Between the Mere-Difference and Bad-Difference Views of Disability, 9 J. Ethics & Soc. Phil. 1 (2015). Sara Goering, Rethinking Disability: The Social Model of Disability and Chronic Disease, 8 Current Reviews Musculoskeletal Med. 134, 135 (2015). Id.

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disabilities on society, rather than on people with impairments, it serves as a source of self-esteem for many people with disabilities.35 AI increasingly shapes our physical and virtual environments and influences our culture. Under the social model, algorithms that limit the opportunities of people with disabilities contribute to their degree of disability. People with disabilities may wish to define identities for themselves that are independent of their impairments.36 Some people take pride in their disabilities and choose to display them proudly as symbols of their individuality.37 However, others may wish to keep their impairments private and define themselves by other qualities. EMD-based profiling strips them of this option by sorting them into disability categories without their knowledge or consent. Similarly, people with disabilities may wish to make life choices uninfluenced by their disabilities. However, in many cases, communities and societies make decisions for them.38 If a wheelchair user cannot enter a concert hall because the venue lacks a ramp, then the decision to attend the concert has been taken out of the person’s hands. Similarly, if algorithms exclude a person with disabilities from receiving ads for important resources or opportunities, the algorithms have made life decisions for that person. As many industries increasingly shift decision-making responsibilities from humans to AI-based systems, algorithms will increasingly make decisions for disabled people and deprive them of some degree of control over their lives.39 To prevent this from happening, new laws are required to restrict the collection and use of their data. III. PROTECTING CONSUMERS FROM EMD MINING AND ALGORITHMIC DISCRIMINATION

One option for disabled people who wish to avoid being profiled, stigmatized, or exploited is to disconnect from services that engage in extensive surveillance and profiling. However, this is an impractical solution because it forces disabled people to withdraw from society. In the wake of the Cambridge Analytica scandal, there is a growing movement to disconnect from social media platforms that track user data. However, some commentators point out that quitting Facebook could be difficult or 35 36

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See id. Margaret Wangui Murugami, Disability and Identity, Disability Stud. Q. (2009), www.dsq-sds.org /article/view/979/1173. See Steven E. Brown, What Is Disability Culture?, 22 Disability Stud. Q. 34 (2002) (describing people who view their disabilities as positive aspects of their identities and the movement to establish a disability culture). Id. Charles V. Bagli, Facebook Vowed to End Discriminatory Housing Ads. Suit Says It Didn’t, NY Times (March 27, 2018), www.nytimes.com/2018/03/27/nyregion/facebook-housing-ads-discriminationlawsuit.html.

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damaging for peoples’ social lives.40 In our information-based society, we increasingly rely on digital services and internet-enabled devices to pay bills, communicate with friends and family, share opinions, and participate in the democratic process.41 Instant messaging apps and social media platforms are becoming a primary mode of communication for many people.42 For some people with conditions such as mobility impairments or anxiety disorders, social media and other internet technologies may be their primary means of socializing and forming communities. Disconnecting from all services that track consumers would effectively be choosing to disengage from entire spheres of society.43 Besides, data collection is ubiquitous, and many companies track consumer data even if consumers have no formal relationship with the company.44 People with disabilities should not be forced to make a choice between giving up their privacy or engaging fully with society. Choosing to protect their private information by withdrawing from social and professional circles will only further marginalize them. If full disconnection is not a viable option, and it is unlikely to be effective anyway, how can we ensure that companies handle disability-related data fairly without compromising the ability of people with disabilities to benefit from online services? A. Amend Title III of the ADA The ADA was drafted in the late 1980s, when the Internet was in its infancy and the first web browsers had not been introduced. At that time, Congress could not have envisioned the extent to which people would come to rely on the Internet. From banking and grocery shopping to socializing and consuming entertainment, people now use the Internet for nearly all the services for which they previously used brickand-mortar places of public accommodation. As discussed above, the ADA was implemented to ensure that people with disabilities can “fully enjoy the goods, services, privileges and advantages, available indiscriminately to other members of the general public.” To prevent algorithmic discrimination by 40

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Jeremy C. Young, Why Quitting Facebook Is a Bad Idea, Wash. Post (March 28, 2018), www.washingtonpost.com/news/made-by-history/wp/2018/03/28/why-a-boycott-of-facebook-isa-bad-idea/?utm_term=.0a0467df6f00. See Jack M. Balkin, Commentary, Digital Speech and Democratic Culture: A Theory of Freedom of Expression for the Information Society, N.Y.U. L. Rev. 1, 5–6 (2004) (describing how technology expands opportunities to communicate and contribute to the generation and transmission of culture). Andrea Lunt, Messaging Apps: The Way Forward for Humanitarian Communication, Medium (July 25, 2017), medium.com/law-and-policy/messaging-apps-the-way-forward-for-humanitariancommunication-74ab8f3b113e; see also Narmeen Shigri, Accessible Social Media and Apps Give a Voice to People with Disabilities, Medium (August 23, 2017), medium.com/arise-impact/accessiblesocial-media-and-apps-give-a-voice-to-people-with-disabilities-c61d6497d620. See Jacob Morgan, Privacy Is Completely and Utterly Dead, and We Killed It, Forbes (August 19, 2014), www.forbes.com/sites/jacobmorgan/2014/08/19/privacy-is-completely-and-utterly-dead-and-we-killedit/#660aba1131a7; see also Young, supra note 40. Amar Toor, Facebook Begins Tracking Non-Users Around the Internet, Verge (May 27, 2016), www.theverge.com/2016/5/27/11795248/facebook-ad-network-non-users-cookies-plug-ins.

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online businesses, Title III’s definition of places of public accommodation should be amended to include them. Such an amendment is consistent with the goals and legislative history of the ADA and would remove ambiguity regarding the status of websites, social media platforms, and other online businesses as places of public accommodation. B. Expand the Scope of HIPAA’s Covered Entities Because HIPAA applies only to health data handled by covered entities such as doctors and insurance companies, it fails to capture EMD, which is inferred from consumer behavior. One way to protect disabled consumers from EMD-based profiling and targeted advertising is to expand the scope of HIPAA’s definition of covered entities to include companies that mine EMD. HIPAA’s Privacy Rule, published in 2000, prohibited covered entities from using protected health information (PHI) for marketing purposes without patient authorization. However, it contained multiple exceptions that led to widespread confusion. The more recent HIPAA Omnibus Rule, first proposed in 2010, tightened these restrictions. The Omnibus Rule prohibits covered entities from using PHI for marketing without patient authorization if the marketing promotes the products of third parties who compensate the covered entities for the communications. If the definition of HIPAA’s covered entities was expanded to include social media platforms, data brokers, and other businesses that mine EMD, those companies would be prohibited from marketing the products of third parties to consumers based on their PHI. However, this approach may not fully address the risks posed by EMD-based profiling and disability discrimination. Whether companies could market to consumers based on EMD would hinge on whether EMD falls within HIPAA’s definition of PHI. The Omnibus Rule defines PHI as “individually identifiable health information,” and it further defines “health information” as any information that “relates to the past, present, or future physical or mental health or condition of an individual.” These definitions would encompass EMD if it relates to health and identifies the individual from whom it was derived. However, EMD is inferred from digital traces with little or no apparent connection to health or disabilities. Therefore, in order to bring EMD into HIPAA’s definition of PHI, the definition of “health information” would need to be broadened to include inferred health data originating from medical and non-medical sources. C. Establish Fiduciary Duties for Companies that Mine Emergent Medical Data One way to limit algorithmic disability discrimination without redefining PHI is to impose fiduciary duties on companies that collect EMD.45 Fiduciary duties reduce 45

Katherine J. Strandburg, Free Fall: The Online Market’s Consumer Preference Disconnect, 2013 U. Chi. Legal F. 95, 168 (2013).

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exploitation in relationships characterized by trust and asymmetries of knowledge and power.46 Classic fiduciaries include doctors and lawyers. The asymmetries of knowledge and power between these professionals and their clients create opportunities for exploitation. Consequently, society imposes duties of care, loyalty, and confidentiality on the professionals. Jack Balkin argues that society should impose similar duties on companies that collect large volumes of consumer data such as social media platforms and online retailers.47 In many cases, they rely on consumergenerated content to make a profit, and they encourage consumers to reveal as much information as possible. Yet consumers know very little about these companies or how they operate.48 Unlike consumers, the companies wield tremendous market and political power. Due to these asymmetries, and because they collect and analyze people’s information, Balkin calls them “digital information fiduciaries.”49 If we imposed fiduciary duties on social media platforms, then the duty of care might require them to ensure that their EMD use does not harm disabled users in foreseeable ways. The duties of loyalty and confidentiality would require them to protect disabled users’ EMD and avoid selling it or otherwise using it to exploit consumers. However, this approach would not affect companies, such as advertisers and data brokers, that lack contractual relationships with consumers. Fiduciary duties stem from relationships characterized by trust between two parties, and they are not imposed on third parties outside those relationships. As digital information fiduciaries, social media platforms could be barred from sharing EMD with third parties such as data brokers, yet those third parties could still scrape digital traces from websites and purchase them from other sources to mine EMD. Situations may also arise in which an information fiduciary’s actions performed in the interest of one user will necessarily harm another user. If an attorney represents two clients, then she owes fiduciary duties to them both. However, in some cases, acting in the interest of one client may adversely affect the other. Similar conflicts may arise if social media platforms have fiduciary obligations to multiple users. Fiduciary law is a powerful tool for preventing algorithmic discrimination and, as the law of digital information fiduciaries takes shape, it must anticipate and account for potential conflicts. D. Implement Robust Data Protection Laws in the United States In addition to modifying antidiscrimination and health privacy laws to deter algorithmic disability discrimination, the United States should implement robust data protection laws that acknowledge that health and disability-related data can be 46 47 48

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Tamar Frankel, Fiduciary Law, 71 Cal. L. Rev. 795, 800 (1983). Jack M. Balkin, Information Fiduciaries and the First Amendment, 49 U.C. Davis L. Rev. 1183 (2016). Jack M. Balkin, Lecture, The Three Laws of Robotics in the Age of Big Data, 78 Ohio St. L.J. 1217, 1237 (2017). Balkin, supra note 47 at 1225.

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mined both from within the healthcare system and outside of it. For inspiration, we can turn to our European neighbors. The European Union’s General Data Protection Regulation (GDPR) protects health information regardless of its source. Article 9(1) of the GDPR prohibits the processing of special categories of personal information, including health and disability-related data, unless one of ten exceptions in Article 9(2) is met.50 Employment discrimination and vulnerability-based marketing should fail to satisfy these requirements and are likely barred by Article 9. The GDPR also provides safeguards against unauthorized profiling and automated decision-making, which will help protect disabled consumers from EMDbased exploitation. For example, Article 22 may give EU citizens the right to opt out of decision-making based solely on automated data processing, which includes profiling. In theory, Article 22 encompasses EMD-based profiling and automated decision-making. However, the Article requires that such decisions have “legal effects” on data subjects or effects that are “similarly significant.” It remains to be seen how the phrase “similarly significant effects” will be interpreted by EU courts, and not all applications of EMD may come under the scope of Article 22. Some automated decisions have legal effects while others do not. If an EU citizen is denied employment when automated profiling reveals she has a disability, then the decision not to hire her affects her legal status. Under Article 22, EU citizens should be able to opt out of this type of decision-making. However, other examples are less clear cut. For instance, it is unclear whether Article 22 will be interpreted to include automated decisions that drive vulnerability-based marketing. Marketing likely has no legal effects on consumers. Nevertheless, it may meet the “similarly significant” requirement of Article 22 if a case can be made that vulnerability-based marketing deprives disabled consumers of equal opportunities to engage with society. Unlike the EU, the United States has no universal privacy or data protection laws, and there is no fundamental right to privacy. Compared to EU laws, US privacy statutes are more fragmented, regulating specific industries such as health and finance. Some US states are implementing more universal privacy laws inspired by the GDPR. In 2018, the California Consumer Privacy Act (CCPA) was passed. The CCPA is relevant to EMD mining because its definition of “personal information” includes not only raw data collected from consumers (i.e., their digital traces), but also the inferences made about consumers based on raw data (e.g., their classification in disabilityrelated categories).51 The CCPA grants consumers a right to request that a business disclose the “categories and specific pieces of personal information that it collects about the consumer, the categories of sources from which that information is collected, the business purposes for collecting or selling the 50

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Council Regulation 2016/679, General Data Protection Regulation, art. 12, 2016 O.J. (L 119) 38–39 (EU). Cal. Civil Code § 1798.140(o)(1)(K) (West 2018).

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information, and the categories of 3rd parties with which the information is shared.”52 The CCPA acknowledges that the unauthorized disclosure of inferred health data can harm consumers in myriad ways ranging from reputational damage to physical harm, and it empowers consumers to request and delete their personal information or require that it not be sold to third parties.53 Therefore, the CCPA will give consumers with disabilities greater control over their data and the inferences derived from it. However, the future of the CCPA is uncertain. On August 6, 2018, a group of businesses and industry associations led by the California Chamber of Commerce sent a letter to Senator Bill Dodd, an author of the CCPA, urging him to remove inferred data from the CCPA’s definition of personal information.54 If the group had been successful, California companies would be able to continue mining EMD with impunity, even after the law goes into effect in 2020. However, the proposed changes were not implemented in the most recent version of the CCPA. US lawmakers should draw inspiration from the GDPR and the CCPA to craft comprehensive federal privacy laws that address the risks of the modern information economy, including EMD-based profiling, scoring, and discrimination. Such regulation must acknowledge that inferred data such as EMD constitutes personal data, and consumers should have the same rights over personal data as they do over their medical records. However, tech companies are lobbying Congress to implement softer federal privacy laws that will preempt the CCPA and any state laws that follow California’s example.55 Their success would be a serious setback for consumers with disabilities. IV. CONCLUSION

Regardless of the regulatory path taken, we must evolve our understanding of health information and disability-related data. Whether it is exchanged between patients and doctors or pieced together by AI from the digital traces scattered throughout the Internet, the data of people with disabilities deserves protection. When advertisers infer disabilities from consumer behavior, they circumvent existing privacy and antidiscrimination laws, which contain outdated definitions of health information and the entities that collect it. Regardless of its source, health data has the potential to harm people if used to exploit rather than to heal, and companies can increasingly 52 53 54

55

2018 Cal. Stat. ch. 55; see also id. Civil §§ 1798.100(a), 1798.105(a), 1798.120(a). Daniel R. Stoller, Business Groups Push Calif. Privacy Law Changes, Bloomberg Law (August 10, 2018), www.bna.com/business-groups-push-n73014481652/. Jessica Guynn, Amazon, AT&T, Google Push Congress to Pass Online Privacy Bill to Preempt Stronger California Law, USA Today (September 26, 2018), www.usatoday.com/story/tech/news/2018/09/26/ amazon-att-google-apple-push-congress-pass-online-privacy-bill-preempt-stronger-california-law /1432738002/.

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mine EMD and use it to reduce the autonomy of people with disabilities. Members of this group should be able to control when and how their data is used to draw conclusions about them and make decisions for them. Otherwise, AI-based inferences will contribute to the obstacles that people with disabilities must overcome in their daily lives.

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19 The Pathways Approach to Priority Setting: Considering Quality of Life While Being Fair to Individuals with Disabilities Govind Persad 1

The use of quality-adjusted life-years (QALYs) to set healthcare priorities has been criticized as unfair to people with disabilities that affect their health or lifespan.2 For instance, because many quality-of-life assessments associate paraplegia with lower quality of life, individuals with paraplegia are assigned lower priority for transplantable organs when those organs are distributed using QALY-based approaches.3 This consequence of using QALYs to set priorities has prompted a variety of responses. Some have argued that priorities should be set using life-years rather than QALYs.4 Others have argued that discriminating against people with disabilities is justified.5 Neither response appears fully satisfying. The Pathways Approach proposed here takes a different view. It argues that priority setting should consider the pathways via which disabilities impose 1

2

3

4

5

I am grateful to Sean Aas, Joe Millum, Wendy Salkin, Michael Stein, David Wasserman, and an audience at the Petrie-Flom Center for their comments. See, for example, Philip G. Peters, Jr., Health Care Rationing and Disability Rights, 70 Ind. L.J. 491, 500–02 (1995) (reviewing the criticism that the use of QALYs in priority setting discriminates against people with disabilities); John Harris, Double Jeopardy and the Veil of Ignorance – A Reply, 21 J. Med. Ethics 151, 151 (1995). Concerns about discrimination against people with disabilities arguably underpin the Affordable Care Act’s limitation on the use of QALYs. For example, 42 U.S.C. § 1320e-1 (2018) (stating that the “Patient-Centered Outcomes Research Institute . . . shall not develop or employ a dollars-per-quality adjusted life year (or similar measure that discounts the value of a life because of an individual’s disability) as a threshold to establish what type of healthcare is cost effective or recommended”); see Govind Persad, Priority Setting, Cost-Effectiveness, and the Affordable Care Act, 41 Am. J.L. & Med. 119, 133 (2015) (arguing that § 1320e-1 focuses on the specific concern “that QALYbased approaches systematically disadvantage those who are already disabled even when setting priorities for treatment unrelated to their disability”). See, for example, Tyler M. John et al., How to Allocate Scarce Health Resources Without Discriminating Against People with Disabilities, 33 Econ. & Phil. 161 (2017). I have defended this view in previous work. See Govind Persad, Alan Wertheimer & Ezekiel J. Emanuel, Standing by Our Principles: Meaningful Guidance, Moral Foundations, and Multi-Principle Methodology in Medical Scarcity, 10 Am. J. Bioethics 46, 47 (2010); see also Samuel Kerstein, Dignity, Disability, and Lifespan, 34 J. Applied Phil. 635 (2017) (offering a Kantian argument that could be used to justify the choice of a life-year metric over a QALY metric). Nick Beckstead & Toby Ord, Bubbles Under the Wallpaper: Healthcare Rationing and Discrimination, in Bioethics: An Anthology 406 (Helga Ku¨hse et al. eds., 2016).

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disadvantages and evaluate whether the existence of those pathways reflects unjust discrimination against people with disabilities, or instead reflects the effects of laws of nature, resource scarcity, or permissible trade-offs. When setting priorities, decision-makers may consider disadvantages that result from the latter three pathways, but must ignore disadvantages that stem from unjust discrimination if ignoring such disadvantages would improve the position of patients with disabilities.6 I. IMPLEMENTING THE PATHWAYS APPROACH

A. Idealization and Quality of Life The Pathways Approach – like a traditional QALY approach – considers expected future quality of life. But rather than considering individuals’ expected future quality of life in the actual world, it considers their expected future quality of life in an idealized world where individuals with disabilities are not subject to discrimination, although the supply of resources is still finite and laws of nature still apply (Figure 19.1). Unlike traditional QALY approaches, the Pathways Approach recognizes that many disadvantages that people with disabilities experience are contingent on the arrangement of the social world. But it improves on the social model of disability by Specific disabilities (e.g., blindness, alopecia, paraplegia)

Unchangeable phenomena or laws of nature

Design and spending choices that take appropriate account of trade-offs

Private aversions and attractions

Design and spending choices that enact disability-focused injustice

Disadvantage (poorer quality of life) that is appropriately considered when setting priorities

figure 19.1: Differentiating routes to disadvantage. (Dashed lines represent pathways

that ought not be considered when assessing disadvantage for purposes of priority setting; solid lines represent pathways that may be considered.) 6

This proposal is inspired by suggestions that courts have made when making best interest determinations in a context of background discrimination. See Palmore v. Sidoti, 466 U.S. 429 (1984).

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incorporating considerations of distributive justice into priority-setting decisions. In doing so, it responds to important criticisms of the social model that David Weisbach and Adam Samaha have offered. Weisbach, for instance, has criticized the social model for failing to consider trade-offs between the interests of people with specific disabilities and the interests of others.7 By allowing priority-setting processes to recognize that scarcity sets limits on our ability to optimize social arrangements for individuals with disabilities, the Pathways Approach represents one way of addressing Weisbach’s concern. Similarly, the Pathways Approach agrees with Samaha’s observation that while the social model “suggests causes of disadvantage . . . what we do about it is a matter of contested norms,” and that “opposition to social restructuring as a remedy for disability need not be the product of ignorance, insensitivity, false consciousness, or political immorality,” but “might be an understandable reaction within a coherent normative framework.”8 Under the Pathways Approach, determining which disadvantages should be considered for purposes of priority setting will involve identifying the correct normative framework. While the Pathways Approach bases priority-setting judgments on quality-of-life outcomes in an idealized world, it need not settle the question of what the idealized world would look like. Rather, the Pathways Approach is modular: members of any given society, or adherents of any given political doctrine, can employ the approach’s core insight by considering which social institutions should exist and what the claims of people with specific disabilities to scarce resources would be in those institutions.9 One such variation might require that priority-setting judgments be based on an idealization that eliminates background injustice altogether, not only disability-focused injustice. On this approach, priority-setting judgments could not consider resource scarcity that results from unjust (but not disability-focused) policies. A variation going in the opposite direction might permit the use of prioritysetting judgments that consider how ethically acceptable private discrimination affects individuals with disabilities. This approach would, for instance, allow the consideration of quality of life that result from intimate discrimination, as discussed in Section II.C. Still other variations might assign a lower numerical weight for priority-setting purposes to quality-of-life losses that result from disability-focused injustice rather than directing priority-setting actors to altogether ignore the effects of unjust bias on quality of life. 7

8 9

David A. Weisbach, Toward a New Approach to Disability Law, 1 U. Chi. Legal F. 47, 68–69 (2009) (“To provide accommodations, we have to take from some to give to others. Sometimes we will be justified in doing so, but sometimes we will not be, and we must distinguish these cases . . .. The social model ignores the brute fact of scarcity and, therefore, is unable to address distributional questions.”) Adam M. Samaha, What Good Is the Social Model of Disability? 74 U. Chi. L. Rev. 1251, 1275 (2007). For an entry into this debate, see id. at 1286–306 (examining how far libertarian, utilitarian, and egalitarian approaches might be willing to restructure society in order to break the link between disability and disadvantage).

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B. Remedial Action and Past Disadvantage Another modular element of the Pathways Approach involves its treatment of past disadvantage. While it could be combined with a view that ignores past disadvantage, I find the Pathways Approach most plausible when combined with the claim that past disadvantage strengthens individuals’ claims to assistance.10 Notably, the Pathways Approach would treat past quality of life differently from future quality of life. Past disadvantage would strengthen an individual’s claims to assistance even if it was justly or unavoidably imposed, though there might be particular focus on remediating unjust disadvantage. The Pathways Approach directs decision-makers not to allow existing, unjust disadvantage to support the imposition of additional disadvantage.11 C. Operationalizing the Pathways Approach The Pathways Approach directs us to consider not only how individuals’ lives are going, but why they are going well or badly. This emphasis on the causes of disadvantage means that the Pathways Approach would reject the traditional QALY approach’s exclusive reliance on population-wide surveys, and would agree with Barnes and others that the testimony of people who are currently experiencing, or have experienced, disabilities is crucial. But the Pathways Approach should not rely solely on self-reports: it can also include the considered judgments of others.12 In particular, it will include the perspectives of experts who have examined the social pathways that correlate disability with disadvantage and of stakeholders who can testify to the justice or injustice of proposed changes in resource allocation. Two ways of operationalizing the Pathways Approach might be the use of extended cost-effectiveness analysis and the use of a social welfare function. An extended cost-effectiveness analysis could allow a given intervention to be evaluated both in terms of whether it promotes population well-being and in terms of whether it avoids distributive injustice or avoids giving effect to private biases.13 The usefulness of an extended cost-effectiveness analysis might depend on whether the duty to avoid giving effect to private biases is categorically prior to the goal of promoting 10 11

12

13

John et al., supra note 2. Cf. Loren D. Goodman, Note, For What It’s Worth: The Role of Race- and Gender-Based Data in Civil Damages Awards, 70 Vand. L. Rev. 1353, 1385 (2017) (arguing that “allowing race-based and gendered statistics to apply in beneficial circumstances may serve an important policy function” and “may compensate individuals who previously faced discrimination as a result of their membership in a certain racial class”). See Paul Menzel, How Should What Economists Call “Social Values” Be Measured?, 3 J. Ethics 250, 258–63 (1999). On extended cost-effectiveness analysis, see Stephane Verguet et al., Universal Public Finance of Tuberculosis Treatment in India: An Extended Cost-Effectiveness Analysis, 24 Health Economics 318 (2015); see also Govind Persad, Beyond Administrative Tunnel Vision: Widening the Lens of Costs and Benefits, 15 Geo. J.L. & Pub. Pol’y 941, 953 (2017).

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well-being, or whether the two goals can instead be balanced against one another.14 If the goals can be balanced against one another, a social welfare function could be another way of representing both of them for decision-makers.15 II. EXAMINING PATHWAYS TO DISADVANTAGE

In this part of the Chapter, I further examine the question of which pathways to disadvantage should be considered when setting priorities. I argue that unavoidable and unjust-to-prevent disadvantages can legitimately be considered even when considering them is worse for individuals with disabilities, but that disadvantages imposed by private aversions or unjust policies should not be counted against individuals with disabilities when setting priorities. A. Unavoidable Disadvantage This section defends two claims. First, certain disabilities impose inherent disadvantages – disadvantages we cannot prevent no matter how we structure the social world.16 These include disabilities that make experience impossible; those that make the exercise of agency impossible; and those that impose severe pain. Second, it is legitimate to consider the quality-of-life losses attributable to inherent disadvantages when setting priorities. The limit case of a bodily difference that makes experience and agency impossible is death. Both critics and supporters of QALY approaches agree that avoiding death is an important priority, as do disability rights advocates.17 A major reason why death is bad is that it deprives us of our capacity to have experiences or exercise agency.18 This deprivation is inherently bad – it is bad irrespective of how the built environment or the social world are organized. The inherent badness of death supports the further claim that bodily or mental differences that share almost all of death’s bad features, such as anencephaly, persistent vegetative state, and coma, are also bad.19 14

15

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17

18

19

Cf. David D. Meyer, Palmore Comes of Age: The Place of Race in the Placement of Children, 18 U. Fla. J.L. & Pub. Pol’y 183, 207 (2007) (proposing a balancing approach). See, for example, Howard F. Chang, A Liberal Theory of Social Welfare: Fairness, Utility, and the Pareto Principle, 110 Yale L.J. 173, 215 (2000) (proposing a fairness-based social welfare function). Here I disagree with Elizabeth Barnes’ contrary suggestion regarding physical disability in The Minority Body 102 (2016), although Barnes takes no stance on whether severe cognitive or psychological disability is inherently disadvantaging, id. at 4. See, for example, Myers v. Schneiderman, 85 N.E.3d 57, 84 (N.Y. 2017) (referencing amicus brief by the prominent disability rights organization “Not Dead Yet”). See, for example, Carl Tollef Solberg & Espen Gamlund, The Badness of Death and Priorities in Health, 17 BMC Med. Ethics 21 (2016). For a developed exploration of parallels between the badness of death and the badness of unconscious states, see generally Kasper Lippert-Rasmussen, Two Puzzles for Deontologists: Life-Prolonging Killings and the Moral Symmetry Between Killing and Causing a Person to Be Unconscious, 5 J. Ethics 385 (2001).

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That death and unconsciousness are inherently bad is fully compatible with the reasonableness of sometimes choosing or risking these states in order to avoid other outcomes, including alternatives that are not inherently bad. We see this in everyday cases: when you go on a road trip, you slightly raise your risk of ending up in an inherently bad state (death), even though just staying in town is not an inherently bad state to be in. Does the claim that states like coma or anencephaly are inherently bad support the claim that bodily differences like blindness are inherently bad, because both people who are blind and people who are dead lack the capacity to have visual experiences? No. As Elizabeth Barnes describes, even while blindness closes off some possibilities, it can open up others: it can protect people from making certain stereotypic judgments, grant access to unique sensory experiences, and liberate them from established norms.20 Coma, anencephaly, and death, unlike blindness, do not open up alternative possibilities because they block the capacity to have experiences at all. Furthermore, Barnes’ arguments rely centrally on the first-person testimony of individuals with those disabilities.21 Dead, comatose, or anencephalic individuals cannot provide testimony. Turn now to mental disabilities that remove the capacity for complex thought, interpersonal interaction, or long-term planning while still leaving open the possibility of having experiences. (Severe psychosis and advanced dementia might be examples.) We often cannot obtain first-person testimony from people with these disabilities, and even if we could, they – as Barnes acknowledges – might be unreliable reporters.22 These sorts of mental disabilities close off many valuable possibilities while opening few. While my arguments about these profound mental disabilities do not directly contradict Barnes’ view, my claim that severe pain is inherently disadvantaging does. Barnes argues that the testimony of some people who have painful disabilities but regard them as meaningful counts in favor of pain not being an intrinsic bad. Here, for reasons of space, I follow arguments that others have offered: to use Barnes’ terminology, pain might be an “intrinsic bad” even while the painful disability is a “local good.”23 Even if a painful disability can be good or neutral on balance, it is the disability, not the pain, that makes it so. My further suggestion is that just as there is no ethical problem with incorporating the badness of death into priority-setting methods, there is no ethical problem with 20 21 22

23

Barnes, supra note 15, at 95–96. See Barnes, supra note 15, at 102. See Barnes, supra note 15 at 3 (noting that “psychological and cognitive disabilities raise complicated issues for the reliability of testimony that simply aren’t present in the case of physical disability”). Other authors broadly sympathetic with a disability-rights perspective endorse the idea that chronic pain is different from other disabilities. For example, Stephen M. Campbell & Joseph A. Stramondo, The Complicated Relationship of Disability and Well-Being, 27 Kennedy Inst. Ethics J. 151, 157 (2017); see also John et al., supra note 2, at 169–70 (suggesting that that Duchenne Muscular Dystrophy is inherently disadvantaging).

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incorporating unavoidable disadvantages into priority setting. While there may be challenges in precisely measuring how bad these unavoidable disadvantages are, there is no disagreement that they are disadvantages, and would remain disadvantages regardless of our efforts. B. Unjust-to-Prevent Disadvantages In the prior section, I argued that we should consider unpreventable disadvantages that result from disability when setting priorities. In this section, I turn to preventable disadvantage. When the social changes required to eliminate or reduce certain disadvantages that result from disability would unacceptably sacrifice the interests of others in society, I argue we should regard these disadvantages as similar to unpreventable disadvantages. Social policies that assist individuals with specific disabilities often do so by reallocating limited resources, changing social norms, and reshaping the built environment. In doing so, they implicate others’ legitimate interests in public resources, norms, and spaces. Web design changes to assist people with visual disabilities, for instance, also affect people with mobility disabilities.24 Efforts to promote the interests of people with disabilities in accessing affordable care affect the interests of personal assistance workers in more generous wage and hour protections.25 More generally, plausible accounts of distributive justice recognize values other than the mitigation of disadvantage.26 These values also set limits on efforts to mitigate disadvantage caused by interaction between disability and the social world.27 I further suggest that just as there is no ethical problem with incorporating unavoidable disadvantages into priority setting, there is no ethical problem with considering disadvantages that are preventable – but would be unjust to prevent – when setting priorities. Incorporating these disadvantages does not magnify societal injustices that target individuals with disabilities. While these disadvantages result 24

25

26

27

See J. Bern Jordan & Gregg C. Vanderheiden, Modality-Independent Interaction Framework for CrossDisability Accessibility, in Cross-Cultural Design: Methods, Practice, and Case Studies 218, 222 (P. L. Patrick Rau ed., 2013). See also Francis & Silvers, Chapter 10 (example of a ramp versus stairs). See Samuel R. Bagenstos, Disability Rights and Labor: Is This Conflict Really Necessary?, 92 Ind. L.J. 277, 285–87 (2016). See John et al., supra note 2, at 177 (defending an approach that “allocates benefits on the basis of a combined measure of the amount of benefit provided and the degree of disadvantage of the beneficiaries”). Various aspects of disability law that permit private conduct or public policy that fails to maximally promote the interests of individuals with disabilities might be seen as responding to these public interests. Examples are the requirements that accommodations be reasonable and not cause undue hardship, and that individuals with disabilities be qualified for the positions they seek. See, for example, Reed v. LePage Bakeries, Inc., 244 F.3d 254, 259 (1st Cir. 2001) (observing that “the difficulty of providing plaintiff’s proposed accommodation will often be relevant both to the reasonableness of the accommodation and to whether it imposes an undue hardship”).

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from societal choices, those choices are not unfair or discriminatory; rather, they represent the fairest way of allocating the burdens of scarcity among different groups. Because they result from the fair allocation of burdens, they generate no basis for complaint. Here, I disagree with Sean Aas and David Wasserman, who argue that disabled individuals are owed compensation for the negative effects of ex hypothesi just policies, such as the installation of non-Braille street signs that help sighted pedestrians navigate.28 While social policy as a whole should not unjustly burden any group, there is no requirement that specific policies maximally serve the interests of disabled individuals or return them to their status quo ante.29 C. Privately Imposed Disadvantage and Freedom of Association Above, I argue that fairness can sometimes justify social policies that are less favorable to individuals with specific disabilities, and that the effects of these policies can legitimately be considered when setting priorities. In this section, I evaluate the appropriate social response to individual choices, in particular freedom of association that may disadvantage individuals with disabilities. I argue that while law should not prohibit these choices, it also should ignore their negative effects on individuals with disabilities when setting priorities. Certain exercises of freedom of association are ethically acceptable even though, in aggregate, they impose disadvantages on individuals with specific disabilities. For instance, a person who uses only Sign Language may reasonably prefer to live with others who understand Sign Language, and the same is true for someone who only uses a nonsigned language.30 As another example, it can be ethically acceptable to decide whom to date or marry on the basis of personal and even arbitrary inclinations.31 Yet ethically acceptable choices about rooming and dating can impose substantial disadvantages on individuals with these disabilities.32 Other exercises of freedom of association that impose disadvantage on individuals with specific disabilities are unethical, but are (and should remain) legal. For instance, a congregation that refuses to accept a prospective member with a disability or a husband who divorces his wife when she becomes disabled might 28 29

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Sean Aas and David Wasserman, Natural and Social Inequality, 13 J. Moral Phil. 576, 588 (2016). Aas and Wasserman’s suggestion that compensating the disabled for policy choices that disadvantage them is required by fair equality of opportunity, id., is mistaken: that certain disadvantages – even disadvantages with respect to opportunity – result from societal choices does not make their amelioration necessary to fair equality of opportunity. Cf. Fair Hous. Council of San Fernando Valley v. Roommate.com, LLC, 666 F.3d 1216, 1221 (9th Cir. 2012) (discussing justifications for considering various forms of similarity when selecting roommates). See Lena Halldenius, Dissecting “Discrimination,” 14 Camb. Q. Healthcare Ethics 455, 456 (2005); cf. Elizabeth F. Emens, Intimate Discrimination: The State’s Role in the Accidents of Sex and Love, 122 Harv. L. Rev. 1307, 1356 (2009). See, for example, Priya Dua et al., Cancer-Related Hair Loss: A Selective Review of the Alopecia Research Literature, 26 Psycho-Oncology 438 (2017); cf. Emens, supra note 30, at 1374–77 (reviewing the burdens imposed on people with disabilities by “intimate discrimination”).

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both be ethically criticized as callous. Yet the law should not prohibit their callousness.33 Disadvantage imposed through the exercise of legally protected freedom of association presents interesting problems for priority setting. Imagine, for instance, that individuals with specific disabilities experience disadvantages in dating because of others’ ethically permissible exercise of freedom of association. Should a prioritysetting agency consider these disadvantages? I will argue that it should not. In Palmore v. Sidoti,34 a child custody case, the Supreme Court considered whether and when governmental actors are permitted to take privately imposed disadvantages into account: It would ignore reality to suggest that racial and ethnic prejudices do not exist or that all manifestations of those prejudices have been eliminated. There is a risk that a child living with a stepparent of a different race may be subject to a variety of pressures and stresses not present if the child were living with parents of the same racial or ethnic origin. The question . . . is whether the reality of private biases and the possible injury they might inflict are permissible considerations for removal of an infant child from the custody of its natural mother. We have little difficulty concluding that they are not. The Constitution cannot control such prejudices but neither can it tolerate them. Private biases may be outside the reach of the law, but the law cannot, directly or indirectly, give them effect.35

In determining what is in the child’s best interest, the Palmore Court recognized the real burdens that private biases produce, but elected to ignore their effect on the child’s interests on the basis that considering such burdens would magnify the effect of private biases.36 In other cases like Adarand Constructors v. Pena,37 however, the Court has affirmed that government may craft policy in response to private biases when doing so would remediate rather than magnify the effects of bias.38 The Pathways Approach extends Palmore’s reasoning to the context of setting healthcare priorities. Under the Pathways Approach, a government or commercial insurer may not set priorities based on quality-of-life judgments that include the negative effects of private aversions or biases on individuals with disabilities, if considering such effects would further disadvantage those individuals. Notably, this approach would not differentiate ethically objectionable private aversions from ethically acceptable ones, since a public decision-maker may not place a stamp of approval on either class of aversion. Parallel reasoning has led courts to 33

34 35 36

37 38

See Emens, supra note 30, at 1340 (endorsing “the general policy assumption in this area – that individual differentiation in the intimate realm should not be legally prohibited”). 466 U.S. 429 (1984). Id. at 433–34. Cf. McWilliams v. McWilliams, 804 F.2d 1400, 1403 (5th Cir. 1986) (“In Palmore the Supreme Court decided that the best interests of the children must yield to the overriding national policy of eradicating racial discrimination.”) 515 U.S. 200 (1995). Id. at 237.

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refuse to consider the effects of racial discrimination when calculating damages in tort cases when doing so would reduce a minority plaintiff’s recovery.39 The Pathways Approach would, however, allow the effects of disability discrimination to be considered when doing so would improve the position of discrimination’s victims. Some have criticized Palmore for its willingness to sacrifice the real-world interests of children targeted by private bias in order to avoid giving effect to those biases.40 The Pathways Approach, in contrast, does not sacrifice the real-world interests of individuals with specific disabilities – rather, it would advance their interests, albeit sometimes at the expense of others. Refusing to consider the disadvantages imposed by private aversions comes at a cost to maximal societal welfare, but ensures that the arbitrary imposition of disadvantage by private actors does not generate additional, publicly imposed, disadvantage.41 D. Unjustly Imposed Disadvantage Many of the disadvantages that people with disabilities experience stem from illegal conduct, such as employment discrimination.42 Just as the Pathways Approach proscribes priority setting that exacerbates the effect of private biases or aversions, it also proscribes priority setting that disadvantages individuals with disabilities by exacerbating the effects of illegal discrimination or wrongful failure to accommodate. The Pathways Approach, however, does not proscribe consideration of the quality-of-life effects of background injustices that affect society more generally, rather than targeting individuals with disabilities. Consider the following scenario: background injustice, namely inadequate taxation and excessive spending on less important objectives, limits the budget and so puts the interests of special education students into conflict with the interests of general education students. Fair resolution of these trade-offs results in a quality of life for special education students that is lower than would exist if funding were adequate. The Pathways Approach would permit the consideration of the lower quality of life that special education students experience due to justifiable budgetary trade-offs. This is because the background 39

40

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42

G.M.M. ex rel. Hernandez-Adams v. Kimpson, 116 F. Supp. 3d 126, 128–29 (E.D.N.Y. 2015) (Weinstein, J.) (concluding that “the state itself discriminates by enforcing a substantive rule of discrimination – damages – based on race or ethnicity in reducing damages in tort cases”). See, for example, Meyer, supra note 14, at 205; David A. Strauss, Discriminatory Intent and the Taming of Brown, 56 U. Chi. L. Rev. 935, 982–83 (1989). Cf. Martha Chamallas, Questioning the Use of Race-Specific and Gender-Specific Economic Data in Tort Litigation: A Constitutional Argument, 63 Fordham L. Rev. 73, 115 (1994)(“To the extent that Palmore insists that the government refrain from using racial categories, even when they function as good proxies for other legitimate variables, the objective of accuracy is subordinated to the goal of racial equity.”) See, for example, PGA Tour, Inc. v. Martin, 532 U.S. 661, 674–75 (2001).

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injustice that necessitates these trade-offs – unlike the operation of private aversions or illegal discrimination – is not an injustice focused on individuals with disabilities. The Pathways Approach, however, does not preclude efforts to reduce background injustice. Advocates for priority setting have been criticized in the past for regarding the paucity of resources devoted to health improvement as fixed, and for otherwise ignoring background injustice.43 While many of these criticisms overlook the explicit recognition by priority-setting advocates that current resource allocations are inadequate, or ignore the fact that priority-setting goals do not preclude efforts to increase resource availability,44 critics are correct to remind us that the background conditions that make specific priority-setting arrangements necessary are not inevitable. It is legitimate for priority-setting actors to recognize the fact that scarce resources sometimes make disabilities disadvantaging in our actual society even while working to achieve a society in which resources are less scarce, and disabilities therefore less disadvantaging. III. CONCLUSION

When we set priorities, we should neither act as if we were in a perfect world where disabilities imposed no disadvantages, nor should we act as if all the disadvantages that disabilities impose can be reduced to a single number and used to set priorities without regard to social injustice. Rather, we should pay more attention to the pathways by which disability engenders disadvantage. The Pathways Approach makes this possible.

43

44

For example, Ted Schrecker, Denaturalizing Scarcity: A Strategy of Enquiry for Public-Health Ethics, 86 Bull. World Health Org. 600, 603 (2008). See Govind C. Persad & Ezekiel J. Emanuel, The Case for Resource Sensitivity: Why It Is Ethical to Provide Cheaper, Less Effective Treatments in Global Health, 47 Hastings Ctr. Rep. 17, 21 (2017); Ezekiel J. Emanuel & Govind C. Persad, Dilemmas in Access to Medicines: A Humanitarian Perspective – Authors’ Reply, 389 Lancet 1008, 1008 (2017).

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20 Measuring Health-State Utility via Cured Patients Nir Eyal1

Many patients’ assessments of quality of life with disability, disease, and reliance on certain treatments become more positive several years into life with these health states. For example, when patients who have been living with colostomies for up to five years are compared to healthy controls and to former colostomy patients whose colostomies were reversed, current patients assign significantly higher utility to living with colostomy.2 “Adaptation,” as this phenomenon is sometimes called,3 is prevalent for such diverse health states as paraplegia, deafness, rheumatoid arthritis, various cancer types, reliance on hormone replacement therapy, and reliance on dialysis.4 1

2

3

4

This work was funded by NIAID R01 AI114617-01A1 (“HIV cure studies: risk, risk perception, and ethics”). The author is grateful to Dan Brock, I. Glenn Cohen, Jake Earl, David Enoch, Monica Magalhaes, Paul Menzel, Robert Steel, and David Wasserman for detailed comments on earlier drafts. My main idea was prompted by a comment made by Leon Eisenberg RIP in a seminar. See Norman F. Boyd et al., Whose Utilities for Decision Analysis?, 10 Med. Decision Making 58 (1990); Dylan M. Smith et al., Misremembering Colostomies? Former Patients Give Lower Utility Ratings than do Current Patients, 25 Health Psychol. 688 (2006). Some authors reserve “adaptation” for what I call below “skill enhancement,” hence, to one driver of what I call “adaptation.” Other authors may confuse “adaptation” and “adaptive” preferences, which are by definition irrational, and are called out by Polly Mitchell, Adaptive Preferences, Adapted Preferences, 127 Mind 1003 (2018). Still, enough further empirical findings like the ones in Table 20.1 would suggest that most adaptation is adaptive in that sense. See Jihyung Hong, Relative Importance of the EQ-5D Five Dimensions Among Patients with Chronic Diseases in South Korea – a Comparison with the General Population Preference Weights, 16 Health & Quality Life Outcomes 158 (2018); Dinesh Khanna et al., Valuation of Scleroderma and Psoriatic Arthritis Health States by the General Public, 8 Health & Quality Life Outcomes 112 (2010); Murray Krahn et al., Patient and Community Preferences for Outcomes in Prostate Cancer: Implications for Clinical Policy, 41 Med. Care 153 (2003); Christopher W. Noel et al., Comparison of Health State Utility Measures in Patients With Head and Neck Cancer, 141 JAMA OtolaryngologyHead & Neck Surgery 696 (2015); Andrew J. Oswald & Nattavudh Powdthavee, Does Happiness Adapt? A Longitudinal Study of Disability with Implications for Economists and Judges, 92 J. Pub. Econ. 1061 (2008); N. Zethraeus & M. Johannesson, A Comparison of Patient and Social Tariff Values Derived from the Time Trade-Off Method, 8 Health Econ. Letters 541 (1999). For a general review of the topic, see John Brazier et al., Measuring and Valuing Health Benefits for Economic Evaluation 77–84 (2nd ed. 2017). While some work suggests that there is no difference between the evaluations of patients

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This phenomenon has sparked a debate in recent literature. For health states for which adaptation occurs,5 whose reported judgements and preferences should be used as the health-state utility assessments that inform resource allocation? The general public’s, as is practiced in the Netherlands, the United Kingdom, and the United States; or those of patients who have the health state being assessed, as is practiced in some northern European countries and as increasingly attracts researchers?6 For example, if the general public tags a certain health state as very bad and longtime patients tag it as not so bad, whose assessments should we follow? If a health state is very bad, then presumably other things being equal we ought to give high priority to interventions that would completely prevent or cure that condition. If it is not so bad, these interventions would attract fewer resources. The answer is not obvious, because epistemologically, some of the possible causal contributors to adaptation tend to recommend reliance on the adapted patient’s valuations (call these contributors “adaptation-favoring”), and others tend to counsel against it (call them “adaptation-disfavoring”).7 Broadly relying on one group of authors,8 imagine that the reason why patients’ reports on their health states are generally more positive is primarily their skill enhancement – developing greater

5

6

7

8

and those of the general public, see, for example, Maria G. T. Dolders et al., A Meta-Analysis Demonstrates No Significant Differences Between Patient and Population Preferences, 59 J. Clinical Epidemiology 653 (2006); Richard E. Lucas, Adaptation and the Set-Point Model of Subjective Well-Being: Does Happiness Change After Major Life Events?, 16 Directions in Psychol. Sci. 75 (2007), large, recent meta-analyses and studies confirm this generalization for many health states, see, for example, John Brazier et al., Experience-Based Utility and Own Health State Valuation for a Health State Classification System: Why and How to Do It, 19 Eur. J. Health Econ. 881 (2018); Hong, supra note 4; Yvette Peeters & Anne M. Stiggelbout, Health State Valuations of Patients and the General Public Analytically Compared: A Meta-Analytical Comparison of Patient and Population Health State Utilities, 13 Value Health 306 (2010). Adaptation takes place for almost all health states but not for all. For example, patients evaluate depression, anxiety, chronic pain, and persistent noise no better than the general public does. Negative evaluations persist or worsen over time, suggesting that adaptation does not occur. See, for example, Nathaniel H. Lester-Coll et al., Health State Utilities for Patients with Brain Metastases, 8 Cureus 667 (2016); Paul Dolan & Daniel Kahneman, Interpretations of Utility and their Implications for the Valuation of Health, 118 Econ. J. 215, 218 (2008). This chapter focuses on health states for which patients’ assessments are more positive than those of the general public. An interesting descriptive challenge is to characterize the kinds of health states or circumstances in which adaptation does not occur. Are they characterized by impact on some functional scales only (for example, ones marked by a subjective sense of dissatisfaction – arguably including depression, pain, and noise)? By a certain degree of impact? By certain elicitation methods? See Hong, supra note 4; D. Feeny et al., Valuing Health Outcomes, in Cost-Effectiveness in Health and Medicine 167 (Peter J. Neumann et al. eds., 2nd ed. 2016). A third possibility, mainly in research, is reliance on health workers. See, for example, Paul Menzel et al., The Role of Adaptation to Disability and Disease in Health State Valuation: A Preliminary Normative Analysis, 55 Soc. Sci. & Med. 2149 (2002); Peter A. Ubel et al., Whose Quality of Life? A Commentary Exploring Discrepancies Between Health State Evaluations of Patients and the General Public, 12 Quality Life Res. 599 (2003); M. M. Versteegh & W. B. F. Brouwer, Patient and General Public Preferences for Health States: A Call to Reconsider Current Guidelines, 165 Soc. Sci. & Med. 66 (2016). See Menzel et al., supra note 7.

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skill in using whatever physical or mental capacities one retains, thereby improving one’s ability to accomplish existing goals through existing capacities beyond what one previously could ever have imagined was possible (e.g., reliance on hearing instead of sight after becoming blind). Or imagine that they reflect primarily activity adjustment: changing activities to achieve the same fundamental goals (e.g., aerobic wheelchairing instead of cycling as a way to achieve physical exercise). Or assume that they reflect substantive goal adjustment (e.g., listening to music instead of physical exercise). Or suppose they reflect simply a less stigmatizing outlook on that health state (e.g., ceasing to view it as shameful).9 In such cases, adapted patients’ less negative report on their health state would seem comparatively informed, reasonable, reliable, and unproblematic, more so than the general public’s reports on that health state.10 Such causal contributors are usually adaptationfavoring. They suggest that the general public disparages living in those health states in large part out of ignorance, misconception, and prejudgement, and that current patients’ outlooks on their own conditions are better informed. People who never experienced the relevant health state assume that it is unbearable, but the reality is far more nuanced. Other possible causal contributors to adaptation disfavor reliance on adapted patients’ reports. They may support relying instead on the general public or on health professionals – unless a better alternative presents itself. In that vein, imagine that adapted patients’ generally more positive reports on their own health state stems primarily from cognitive denial: from having become deluded about what is functionally possible with their health state (e.g., a person with paraplegia may believe or report that if she wanted, she could still go on a Himalayan trek). Or suppose that it comes from forgetting what being in full health enables others to do (e.g., a person whose obesity disallows picking up things from the floor forgets how easy doing so is for slim people of the same age). Or imagine that adaptation involves what can be called “sour grapes”: an abrupt change of personal tastes and judgements about final ends, simply to avoid a sense of disappointment (e.g., a lifelong hiker who, shortly after becoming paraplegic, suddenly declares that the mountains are boring).11 Or assume simple reporting biases, such as answering questions about one’s quality of life compared to that of people in general by comparing one’s quality of life only to that of patients in similar health states, or to that of oneself in the recent past.12 9

10

11

12

The presence of this mechanism for colostomy may be shown by the positive impact of watching a video illustrating how to replace an ostomy pouch on the general public’s evaluation of ostomy. See Andrea M. Angott et al., Imagining Life with an Ostomy: Does a Video Intervention Improve Quality-of-Life Predictions for a Medical Condition that May Elicit Disgust?, 91 Patient Educ. & Counseling 113 (2013). See M. Karimi et al., Are Preferences over Health States Informed?, 15 Health & Quality Life Outcomes (2017), hqlo.biomedcentral.com/track/pdf/10.1186/s12955-017–0678-9. Compare Jon Elster, Sour Grapes: Studies in the Subversion of Rationality (1st ed. 1983), with Menzel et al., supra note 7, at 2151. See Peter A. Ubel et al., Whose Quality of Life? A Commentary Exploring Discrepancies Between Health State Evaluations of Patients and the General Public, 12 Quality Life Res. 599, 604 (2003).

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Inasmuch as such contributors account for a person’s disease adaptation, reliance on her relatively positive assessment of her health state is less favored. One “solution” recently proposed for this divergence in assessments was for health economists to explore and list both the general public’s and current patients’ healthstate utilities; this way, policymakers can then decide whose assessments to use for which disease, depending on factors like whether that disease makes it impossible for patients to know what it is like not to have it because it is acquired at birth.13 But this solution only passes the buck to policymakers. This Chapter proposes a distinctive way forward that takes seriously both the assessments of longtime patients and the sound reasons that may exist to disfavor these assessments. Instead of trying to settle the existing methodological debate, I outline a potential new method. The proposed method compares current patients’ reports to the reports of past patients who experienced the health states being assessed and were then cured of them. The Chapter finds the reports of past patients most authoritative – more authoritative than either those of the general public or current patients. Accordingly, it suggests characterizing the ratio between current and past patients’ assessments where both are known; we can then extrapolate to cases in which past patients’ assessments are unavailable (or the authority of their reports seems slightly lower), by applying that ratio to current patients’ assessments. I. A WAY FORWARD

To begin with, we need to supersede a dichotomy in recent literature between socalled experienced utility, identified with reports by current patients, and so-called hypothetical utility, identified with reports by the general public.14 This distinction, influenced by the work of Daniel Kahneman, misses a crucial alternative. Researchers could survey a third group: patients who experienced the relevant health state and were then cured of it (e.g., people who used to rely on dialysis and have now undergone a kidney transplantation and been cured). Former patients are likely to be free from the central biases often ascribed to the general public, which stem from the general public’s lack of experience, as well as from the main biases ascribed to current patients, many of which stem from having too much still at stake. They are the only group that experienced all categories of health state – no history of the relevant condition, the condition, and being cured of it. Take patients who underwent kidney transplantation and no longer need dialysis. Usually they report dramatic improvement.15 This contrasts with current 13 14

15

Versteegh & Brouwer, supra note 7, at 73–74. Or at least the subset of the general public that is not current patients. See Brazier et al., ExperienceBased Utility, supra note 4, at 882 (“Of course, patients are also members of the general public, and the strict public vs patient dichotomy is a false – albeit informative – one.”) Wolfgang Fiebiger et al., Health-Related Quality of Life Outcomes After Kidney Transplantation, 2 Health & Quality Life Outcomes 2, 2 (2004) (“It is generally accepted that [health-related quality of

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patients’ assessments. The mean daily health-state utility for spending life on home dialysis, as reported by patients who are on home dialysis (for an unspecified period), is .56 of full health, 44 percent higher than the 0.39 mean daily healthstate utility attributed to this health state by the general population.16 Any initial impression that quality of life on home dialysis is far higher than an ignorant or prejudiced general public assumes is undermined by the relatively negative reports by former patients. Crudely put, if being on dialysis is so good, why do people whose longtime reliance on dialysis ends suddenly deem being on dialysis so bad?17 Plausibly, former patients’ newly negative assessment stems largely from their relative freedom from adaptation-disfavoring factors that affect current patients, for example, need for denial or sour grapes.18 But instead of using this to decide the existing methodological debate, my proposal is to use it to create new methodology. One could characterize the average difference between former and current patients’ assessments of the relevant health state, in general or based on particular circumstances. On the assumption, defended below, that past patients’ reports are most favored, we may call that average the bias of adapted patients (BAP). We can use BAP for calibrating adapted patients’ reports, even for health states we have not investigated. To illustrate, if the BAP for reliance on dialysis, for living with colostomy, for living with knee problems that knee replacement resolves, for living with Hepatitis C, and for many other curable health states is 1.2 (meaning, the average adapted patient who has these conditions evaluates the utility of her health state at 1.2 times the utility we should ascribe to it based on the assessments of past patients), then the average BAP across (similar) conditions is 1.2, and we can calibrate adapted patients’ reports of these health states by dividing the utility that current patients report by 1.2. We can then use the calibrated result to assess the utility of their health state, say, in deciding which health state to prioritize for prevention, treatment, cure, and/or mitigation. When BAP is very close to 1, reliance on adapted patients’ preferences and judgements is highly favored. Interestingly, on further assumptions,

16

17

18

life] improves dramatically after successful renal transplantation compared to patients maintained on dialysis treatment but listed for a transplant.”) David L. Sackett & George W. Torrance, The Utility of Different Health States As Perceived by the General Public, 31 J. Chronic Disease 697, 702 (1978). See E. M. M. Adang et al., Do Retrospective and Prospective Quality of Life Assessments Differ for Pancreas-Kidney Transplant Recipients?, 11 Transplant Int’l 11 (1998). There are similar results for colostomies. An operational advantage of relying on former patients’ experiences of a health state and not on those of current patients is that patients constantly move in and out of given health states. The latter are permutations of rankings on the different dimensions of health, and in practice, identifying a large group of individuals who are, exactly at the right time, experiencing the very same health state is hard. See Feeny et al., supra note 6. And inasmuch as the questions asked are comparative (e.g., would you prefer to be in health state A for x months, or in health state B for y months?), at least one of the two health states will not be concurrently experienced by the person. By contrast, one individual can have recollections of two different health states.

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we may sometimes be justified in applying BAP to assessing incurable health states for which no “former” patients exist, for example, HIV or complete spinal cord injury. Realistically, the bias is likely to differ considerably across patients, health state dimensions, levels of severity and functional impairment, the period for which patients had their health states, and patients’ socioeconomic status and subcultures, to name just a few variables. One could try to identify relevant categories of each within which results tend to cluster. We would then calibrate only within those categories. We might distinguish between the BAP for American patients with severe conditions, another BAP for northern European patients with moderate conditions affecting mobility, and so forth, as shown to be necessary by future research. II. A CRUDE REVIEW

In the search for the BAP, the lowest-hanging fruit would be to reanalyze existing data, for example, on assessments of the quality of life on dialysis by dialysis patients, former dialysis patients, and the general public; on assessments of the quality of life with colostomy by colostomy patients, former colostomy patients, and the general public; and on given orthopedic conditions by patients with these conditions, patients who underwent elective surgery to resolve these orthopedic conditions, and the general public. As a very first step in this direction, I checked the data presented in three such studies.19 They use different units, different populations, and different questionnaires. However, for my preliminary purposes, I took the liberty to be crude and use all. I shall assess the ratio in which current patients’ reports are more positive about their health state than former patients are, across these different measures. Obviously, if my proposal appeals, more data should be collected and analyzed. III. RESULTS

Table 20.1 gives the results of my crude review. IV. DISCUSSION

Across these studies we find an average BAP of 1.45 and a fairly tight range of 1.31–1.67. I do not claim that if we examined a much larger number of studies BAP would remain as closely clustered. My goal is instead to show that a fairly 19

Vanessa L. Kronzer et al., Changes in Quality of Life After Elective Surgery: An Observational Study Comparing Two Measures, 26 Quality Life Res. 2093 (2017) similarly compares changes over time in patient reports, but their postcurative intervention patients include many who were not cured.

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21

20

I. Current patients’ assessment of their present health state

Colostomy reversal

.84

Combined pancreas- 5.23 kidney transplant for type I diabetic patients with endstage renal disease.

Adang et al., supra note 17. Smith et al., supra note 2.

Smith et al. 200621

Adang et al. 199820

Study

The curative intervention it discusses

.64

3.14

II. Former patients’ retrospective assessment of that state

1.31

1.67

BAP: I divided by II

Quality of life on scale from 1–10, measures on a visual analog scale. See p. 13. The 22 participants were surveyed prior to transplantation and 5, 12 and 18 months post- transplantation. Retrospective assessment of quality of life before transplant was even lower 18 months posttransplantation. Dutch study. Utility values for having a colostomy, as a proportion of the utility of not having a colostomy (1). Elicited by time tradeoff. See p. 691. Mail survey completed by 95 patients with

Technical comments

table 20.1 Summarizing three studies that compared experience-based assessments of health utilities and related values between concurrent patients (about concurrent health) and former patients (about earlier health)

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Kidney transplant for 65.9 end-stage renal patients on dialysis

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48

1.45 1.31–1.67

1.37

See Dylan Smith et al., Mispredicting and Misremembering: Patients with Renal Failure Overestimate Improvements in Quality of Life After a Kidney Transplant, 27 Health Psychol. 653 (2008).

MEAN BAP for the three studies BAP RANGE for the three studies

Smith et al 200822

colostomy, and 100 patients who had colostomy reversed. “Colostomy” refers to colostomy or ileostomy. This study also surveyed a general population (drawn from a panel of Internet users who agreed to participate in research surveys), which assigned that health state a utility of .63. USA study. Quality of life on a scale of 1–100. See pp. 656, 657. 307 patients in transplant waiting list and 195 patients 12 months posttransplant were interviewed, with 33 patients belonging to both groups. USA study.

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consistent BAP exists across some settings and to examine how that could be used. The BAP may turn out to be similar only across certain definable subtypes of health state, population, and circumstance. So long as some systematic BAP can be gleaned, at least within a defined area, we can use that to adjust current patients’ reports. Applying the numbers above, when patients with a long-term health condition of this subtype report on average a quality of life of X under it, an adjusted report of quality of life in that condition of X/1.45 could be used. The resulting figures could help determine how urgent it is to prevent, treat, cure, or mitigate that condition, when doing so conflicts with attending to the other medical needs of those patients or those of other patients. In the future, one could analyze more carefully surveys of patients who were cured or “functionally cured” (are in durable treatment-free remission), and conduct new surveys, to identify BAPs. One could also characterize differences between health states, patient populations, and circumstances that help define clusters inside which BAP is relatively stable – although that would be challenging in some cases.23 Interestingly, one of the studies reviewed above found that former patients’ valuations (.64) were close to the community sample (general public, nonpatients, .63).24 Therefore, if past patients’ assessments are as reliable as I have suggested, then in some cases the general public’s reports are, too. Other times, of course, there are independent grounds to presume that the general public is getting things wrong, for example, when some key means to skill enhancement is familiar only to patients. V. RESPONDING TO COUNTERARGUMENTS

My basic proposal to rely on experienced former patients’ health-state utility assessments could be questioned on the ground that former patients are liable to certain 23

24

For example, in irreversible health states like rheumatoid arthritis and limb amputation, there are no “former” patients. It may seem as though in such cases we can simply apply a BAP from reversible health states like end-stage renal disease and colostomy (inasmuch as they are otherwise similar). But that would be challenging or impossible for two reasons. First, compared to patients with reversible health states, patients with irreversible health states may go to greater lengths to discover strategies to lead an acceptable life even with their pathology. Second, patients with irreversible health states may also have more to gain in terms of emotional reconciliation from (potentially wishful) thinking that their health state is far more bearable than in fact it is. The first alleged tendency would favor reliance on this patient population, so count against using a BAP gleaned elsewhere to adjust current patients’ assessments of these irreversible conditions. The second alleged tendency would count in favor of using a BAP gleaned elsewhere. Because both adaptation-favoring and adaptation-disfavoring factors are probably stronger in patients with irreversible health states, it is not clear in advance whether, for these patients, we should rely directly on their reports or adjust them (somewhat) by a BAP. Smith et al., supra note 2, at 691. Both were lower than current patients’ valuations (.84). The authors interpret this as a combination of prejudice on the part of nonpatients and recall bias on the part of former patients, see id. at 689 – an interpretation I am questioning.

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biases.25 For instance, the social unacceptability of telling a related donor that her sacrifice was to little avail may partly account for kidney recipients’ reports of poor quality of life under dialysis. But there are simple solutions to complications like this: surveying former patients who do not know their donors,26 or investigating several health states – dialysis (where this confounder may be present), colostomy (where it cannot), and others. In general, when a source of disfavorability is specific to a determinate category of former patient or health state, we can rely on other former patients or health states – and fix the BAP we use by their assessments. Similar solutions answer other critiques of my reliance on former patients. For example, people tend to remember the final point of an experience more vividly than most of its other parts.27 That suggests that the typical badness of the last experience prior to transplantation (both organ allocation criteria and related donors are often responsive to clinical deterioration) is what colors so negatively many former transplant patients’ recollections of life on dialysis. Another critique is that their negative recollections reflect impact bias, a tendency to ascribe high impact to dramatic events like transplantation. But many patients attain a cure less dramatically than in transplantation – over a long period of gradual abatement of both symptoms and the need for treatment. The final point in these patients’ pathology is a less dramatic “happy ending” of near-complete abatement. As above, surveying such former patients, or a good mix of former patient subcategories, should delimit any bias. Admittedly, such solutions would be insufficient if all former patients’ assessments of all health states were very biased or otherwise disfavored. One worry along these lines is that all former patients suffer from the general recall bias of remembering previous experiences inaccurately or omitting details. Let me hazard a few responses. First, even if we all make mistakes in reconstructing past medical experiences, so long as the mistakes do not have systematic trends, a large enough sample would overcome this complication.28 What if former dialysis patients’ negative depictions of life on dialysis reflect merely the societal dogma that after transplantation there should be great improvement in a patient’s condition? In our context, populations like the one being surveyed are proving their willingness to question societal dogmas on health-state utility. Posttransplant patients remain perfectly willing to question the general population’s rosy assessment of life after transplant; while they admittedly tend to depict being on dialysis as considerably worse than being posttransplant, they depict being posttransplant far more negatively than the general public does.29 25

26 27 28 29

For the counterarguments discussed in this Section I am grateful to Dan Brock, Jim Hammit, Paul Menzel, David Schkade, and others. I am grateful to I. Glenn Cohen for this suggestion. See Daniel Kahneman, Thinking, Fast and Slow (2011). See Steven S. Coughlin, Recall Bias in Epidemiologic Studies, 43 J. Clinical Epidemiology 87 (1990). See Nanna von der Lippe et al., From Dialysis to Transplantation: A 5-Year Longitudinal Study on Self-Reported Quality of Life, 15 BMC Nephrology 191 (2014).

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Posttransplant patients’ independence from some societal dogmas in this area favors reliance on their accounts of life on dialysis.30 Might former patients have an investment bias, meaning, roughly, reluctance to admit to themselves that after everything they sacrificed to get cured, their cure has achieved little?31 As far as I know, there is no general correlation between the effort and burden that a medical intervention demands and patients’ retrospective reports that it made a big difference. Evidence from curative surgeries other than transplantation is also telling. Following several kinds of orthopedic surgery, former patients’ assessments of medical changes resemble “objective” assessments of these changes.32 These former patients, at least, do not seem beholden to heroic societal images of these surgeries. In fact, when patients expect great improvements in advance of spinal surgeries, perhaps in line with society’s dramatic image of these surgeries, that tends to diminish, not to enhance, their postsurgery satisfaction and reported outcomes.33 For any remaining systematic biasing influence on former patients, it might remain possible to “prime” or “debias” them for the duration of surveys.34 That may turn out to succeed more than attempting to debias the general public and current patients, such as through education and deliberation.35 What would be harder to tackle is any systematic selection bias of former patients. Curative interventions can be expensive, burdensome, and risky, so patients who are satisfied with their health state might not consent or be invited to undergo cures; no wonder cured patients assess their former health state negatively!36 Selection bias would need to be quantified, for example, through quasi-experiments, then adjusted for. In the area of spinal surgery, patients with low expectations have higher postsurgery satisfaction and reported outcomes, suggesting complex counteracting 30

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Moreover, former patients used to be current patients, and as such will have already proven their independence from the general public’s health state assessments – by questioning the general public’s relatively negative assessments of these patients’ health state at the time. It is odd to dismiss these same independent-minded individuals’ assessments as beholden to societal dogmas once they are cured. An email from Paul Menzel, Professor Emeritus, Pacific Lutheran University to author (December 16, 2018) (on file with author) raised this possibility, as did a conversation with Jake Earl. See Kelli D. Allen et al., Performance of Global Assessments of Hip, Knee, and Back Symptom Change, 30 Clinical Rheumatology 331 (2011). See Christopher D. Witiw et al., Exploring the Expectation-Actuality Discrepancy: A Systematic Review of the Impact of Preoperative Expectations on Satisfaction and Patient Reported Outcomes in Spinal Surgery, 41 Neurosurgical Rev. 19 (2018). A recent review of debiasing for multiple cognitive biases is Ramona Ludolph & Peter J. Schulz, Debiasing Health-Related Judgments and Decision Making: A Systematic Review, 38 Med. Decision Making 3 (2018). Related work on recall debiasing is rarer, but see Saty Satya-Murti & Joseph J. Lockhart, Diagnosing Crime and Diagnosing Disease-II: Visual Pattern Perception and Diagnostic Accuracy, 63 J. Forensic Sci. 1429 (2018). I am grateful to I. Glenn Cohen for the idea of debiasing intervention in this context. For a brief review of attempts to inform the general public prior to surveying it, see Brazier et al., Measuring and Valuing Health Benefits for Economic Evaluation, supra note 4, at 83–84. See email from David Wasserman, Faculty, National Institutes of Health to author (December 22, 2018) (on file with author) suggesting this proposition.

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biases.37 It may also be possible to circumvent strong selection bias for some health states by projecting BAP from similar states for which easier and safer curative interventions are available. VI. CONCLUSION

Whose health-state utilities to use for health resource allocation – the general public’s, or current patients? This Chapter has moved beyond this dichotomy. First, it defended reliance on a third constituency, namely, on former patients who had experienced the relevant health state but were then cured of it. Second, it showed how comparing former patients’ health-state assessments to those of current patients could yield a new measure, the BAP, which could in the future be used across health state, population, or circumstance clusters to calibrate current patients’ reports so that we can continue to rely on them – in adjusted form. Whether that is possible will depend primarily on the extent to which the possible biases of former patients reviewed in the preceding section turn out to be either negligible or otherwise resolvable. VII. POSTSCRIPT

Favoring, as I do, reliance on a source other than current patients’ unadjusted testimony may be unsatisfying to some activists. Some are keen to use the phenomenon of disability adaptation to claim that disability is not worse, just different.38 The assumption that people who live with disabilities have lower tendency to convert life years into healthrelated quality of life can ground discrimination against them in competition for lifesaving resources, so this claim helps fight such discrimination. And in the eyes of some, sheer acceptance of this claim dignifies people who live with disabilities.39 While I lack the space to do justice to this claim, let me address both concerns about fungible resource allocation and about dignity. First, acceptance of this claim and, specifically, reliance on current patients’ assessments of their health states can undermine the financial and medical interests of those patients, as well as the interests of fellow patients in the same health states. It is reliance on former patients’ more negative reports that would usually lead to preferential treatment for people who continue to live with the relevant disability. For one thing, in the competition between curing current patients’ disability (when they wish to get cured) versus competing conditions and other societal goals, former patients’ relatively negative assessments of the relevant health state would tend to present that cure as a larger health gain, likelier to win funding.40 And on prioritarian or egalitarian ethical 37 38 39 40

See Witiw et al., supra note 34. See, for example, Elizabeth Barnes, The Minority Body: A Theory of Disability (2016). See, for example, Elizabeth S. Anderson, What Is the Point of Equality? 109 Ethics 287, 333 (1999). Versteegh & Brouwer, supra note 7, at 70.

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assumptions, which prioritize the worse off and which many philosophers (including myself) find compelling, relatively negative assessments of health states systematically prioritize people who live in these states. Relying on former patients would thus benefit patients with the relevant health state in various distributive decision nodes.41 What about the claim that it is more dignifying of current patients if their assessments of their own health experiences inform societal allocation criteria, say, because it ascribes them epistemic authority and denies that they are in any way worse? While my approach presupposes that the judgements of persons living with disabilities are biased, it does not presuppose that they are biased in a way that is unique to them. The biases behind adaptation-disfavoring factors (for example, greater salience of the end point of an experience) affect us all. To attempt to correct for these biases is therefore not an attempt to discount the views of people with disabilities due to discrimination or stigma, but an evidence-based attempt at correcting biases that should be adjusted for, whenever they occur. Some philosophers may assume that it is disrespectful to dismiss someone’s (reported) subjective experiences in political life, even when there are good indications that they are biased. But fully dignified persons are fallible, so current patients can be fully respected even if deemed fallible on this matter. Nor would a relatively negative societal assessment of their health state deny that they are full persons with full human dignity. Most fundamentally, “whose preferences should be used in determining the values of health states that influence resource allocation decisions: those of actual patients, or those of the general public?”42 is the wrong question. The right question is which health states are worse, and by how much: how bad for someone does it tend to be to spend a period in this or in that medical condition. That disvalue is not a matter of what it would help society or patients the most to call a worse health state. That disvalue is an objective contributor to the person’s ill-being. Clearly, quadriplegia is worse than mild athlete’s foot. Indeed, if all health states were equal or on 41

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See Tyler M. John et al., How to Allocate Scarce Health Resources Without Discrimination Against People with Disabilities, 33 Econ. & Phil. 161 (2017). There are some complications. Dubbing a health state very negative may prioritize prevention, and highly effective prevention may leave patients who nonetheless had that state socially isolated. However, it is far from clear that patients have the right to make other people sick just in order to avoid social isolation (and prevention would also ensure that fewer people suffer from isolation). It is also true that in triage for life-saving interventions, assessing a condition very negatively would increase the utilitarian inclination to prioritize patients who are free from this condition. However, triage for life-saving interventions should, in my view, be egalitarian not utilitarian, and, in any case, it is far rarer than quotidian decisions on which treatments and cures to prioritize, and on which health conditions win patients large torts. Menzel et al., supra note 7, at 2149. Brazier et al., supra note 4, put the question in an even more policy-relevant form: whom to obtain health-state utilities from. Nor is the most fundamental inquiry even the somewhat more fundamental philosophical question of whether it can be rational to adapt one’s preferences over time. See Dan Moller, Wealth, Disability, and Happiness, 39 Phil. & Pub. Aff. 177, 196–97 (2011).

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a par, applying distributive justice to health resource allocation would make little sense; distributive justice is concerned with the distribution of scarce resources for living better.43 Consider: how would you answer someone who proposed that firefighters should be the ones to assess health-state utility because they deserve that honor the most? The proposal is a category error. These assessments are not primarily a prize to be allocated fairly and respectfully. What we want from health-state utility assessments for life and death societal resource allocation is primarily to get the answers right.

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And if there are health states whose (dis)values are incommensurate, exogenous practical reasons do not help settle which is worse either.

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