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 Bioethics and Disability Toward a Disability Conscious
Bioethics Cambridge Disability Law and Policy Series 1st
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Bioethics and Disability

Bioethics and Disability provides tools for understanding the concerns, fears,
and biases that have convinced some people with disabilities that the health
care setting is a dangerous place and some bioethicists that disability activists
have nothing to offer bioethics. It wrestles with the charge that bioethics as a
discipline devalues the lives of persons with disabilities, arguing that reconcil-
ing the competing concerns of the disability community and the autonomy-
based approach of mainstream bioethics is not only possible, but essential
for a bioethics committed to facilitating good medical decision making and
promoting respect for all persons, regardless of ability.
Through in-depth case studies involving newborns, children, and adults
with disabilities, Bioethics and Disability proposes a new model for medical
decision making that is mindful of and knowledgeable about the fact of dis-
ability in medical cases. Disability-conscious bioethics will bring together dis-
ability experts and bioethicists to identify and mitigate disability bias in our
health care systems.

Alicia Ouellette is a Professor of Law at Albany Law School and a Professor

of Bioethics in the Union Graduate College/Mt. Sinai School of Medicine
Bioethics Program. Her recent publications include Shaping Parental Authority
over Children’s Bodies and Growth Attenuation, Parents’ Choices, and the Rights
of Disabled Children. She is also a coeditor (with Laurence McCullough and
Robert Baker) of the Cambridge Dictionary of Bioethics (2011).
Before joining the law faculty, she served as an Assistant Solicitor General
for the State of New York. As ASG, she briefed and argued more than 100
appeals on issues ranging from termination of treatment for the terminally ill
to the responsibility of gun manufacturers for injuries caused by handguns.
She continues her advocacy work in select cases and was lead counsel on the
law professors’ brief submitted in support of same-sex couples who sought
the right to marry in New York State.
Disability Law and Policy Series

The Disability Law and Policy series examines these topics in interdisciplinary
and comparative terms. The books in the series reflect the diversity of defini-
tions, causes, and consequences of discrimination against persons with dis-
abilities, while illuminating fundamental themes that unite countries in their
pursuit of human rights laws and policies to improve the social and economic
status of persons with disabilities. The series contains historical, contempo-
rary, and comparative scholarship crucial to identifying individual, organiza-
tional, cultural, attitudinal, and legal themes necessary for the advancement of
disability law and policy.
The book topics covered in the series also are reflective of the new moral
and political commitment by countries throughout the world toward equal
opportunity for persons with disabilities in such areas as employment, hous-
ing, transportation, rehabilitation, and individual human rights. The series
will thus play a significant role in informing policy makers, researchers, and
citizens of issues central to disability rights and disability antidiscrimination
policies. The series grounds the future of disability law and policy as a vehicle
for ensuring that those living with disabilities participate as equal citizens of
the world.

Books in the series

Ruth Colker, When Is Separate Unequal? A Disability Perspective, 2009
Larry M. Logue and Peter Blanck, Race, Ethnicity, and Disability:Veterans and
Benefits in Post–Civil War America, 2010
Lisa Vanhala, Making Rights a Reality? Disability Rights Activists and Legal
Mobilization, 2010
Alicia Ouellette, Bioethics and Disability:Toward a Disability-Conscious Bioethics,
2011
Eilionoir Flynn, From Rhetoric to Action: Implementing the UN Convention on
the Rights of Persons with Disabilities, 2011
Bioethics and Disability
Toward a Disability-Conscious Bioethics

Alicia Ouellette
cambridge university press
Cambridge, New York, Melbourne, Madrid, Cape Town,
Singapore, São Paulo, Delhi, Tokyo, Mexico City

Cambridge University Press

32 Avenue of the Americas, New York, NY 10013-2473, USA

www.cambridge.org
Information on this title: www.cambridge.org/9780521110303

© Alicia Ouellette 2011

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 2011

Printed in the United States of America

A catalog record for this publication is available from the British Library.

Library of Congress Cataloging in Publication data

Ouellette, Alicia.
Bioethics and disability: toward a disability-conscious bioethics / Alicia Ouellette.
p. cm. – (Disability law and policy series)
Includes bibliographical references and index.
ISBN 978-0-521-11030-3 (hardback)
1. People with disabilities – Legal status, laws, etc. – United States. 2. Discrimination
against people with disabilities – Law and legislation – Moral and ethical aspects – United
States. 3. Medical ethics – United States. I. Title.
KF480.O94 2011
174′.957–dc22    2011000624

ISBN 978-0-521-11030-3 Hardback

Cambridge University Press has no responsibility for the persistence or accuracy of URLs
for external or third-party Internet Web sites referred to in this publication and does not
guarantee that any content on such Web sites is, or will remain, accurate or appropriate.
To Jacob, Molly, and Sam. You give me reason to believe.
Contents

Preface page xiii

Introduction 1

1. The Struggle:€Disability Rights versus Bioethics 12

I. An Introduction to and Short History of the
Disability-Rights Community 15
II. Introduction to and a Brief History of Bioethics 29

2. Clashing Perspectives and a Call for Reconciliation 47

I. Perspectives and Teachings in Bioethics 49
II. Perspectives and Teachings from the
Disability-Rights Community 57
III. Points of Friction 67
IV. A Call for Peace 68

3. Infancy 72
I. The Case of Sydney Miller 78
A. Views from the Disability Community 86
B. Views from Bioethics 91
II. The Case of Emilio Gonzalez 105
A. Views from the Disability Community 109
B. Views from Bioethics 119
III. Observations 126

ix
Contents

4. Childhood 137
I. Lee Larson’s Boys 140
A. Views from the Deaf and Disability
Communities 146
B. Views from Bioethics 153
II. The Case of Ashley X 161
A. Views from the Disability Community 169
B. Views from Bioethics 173
III. Observations 183
Addendum: National Association for the Deaf
Position Statement on Cochlear Implants 188

5. The Reproductive Years 194

I. The Case of Valerie N. 201
A. Views from Bioethics and the Disability
Community 206
II. The Case of Bob and Julie Egan 214
A. Views from Bioethics and the Disability
Community 220
III. Observations 230

6. The Adult Years 237

I. Mary’s Case 241
A. Views from the Disability Community 242
B. Views from Bioethics 244
II. The Case of Larry McAfee 245
A. Views from the Disability Community 248
B. Views from Bioethics 253
III. The Case of Scott Matthews 258
A. Views from the Disability Community 262
B. Views from Bioethics 263
IV. Observations 266

x
Contents

7. The End of Life 271

I. The Case of Theresa Schiavo 273
II. The Case of Sheila Pouliot 281
III. Views from the Disability Community 289
IV. Views from Bioethics 295
V. Observations 298
A. Constitutional Implications 300
B. Discrimination 305

8. Toward a Disability-Conscious Bioethics 315

I. Working toward Reconciliation 317
A. Listening and Understanding 318
B. Acknowledging Fears, Biases, and Alliances 327
C. Unearthing Common Ground 329
II. Taking Action:€Developing Disability-Consciousness
in Bioethics 331
A. Principles 333
B. Protecting Against Abuse:€The Role of Process 342
III. Disability-Conscious Bioethics in Action 344
A. Disability in Infancy:€Sydney Miller
and Emilio Gonzalez 345
B. Disability in Childhood:€Lee Larson’s
Boys, Ashley X 350
C. The Reproductive Years:€William Peace,
Valerie, and the Egans 356
D. The Adult Years:€Mary, Larry McAfee,
and Scott Matthews 357
E. End-of-Life Decisions:€Sheila Pouliot
and Terri Schiavo 361
IV. Conclusion€– and a Call to Action 362

Index 367

xi
Preface

Much has changed during the years in which I have been working
on this book. For one thing, disability is no longer a shadow issue
in bioethics. When I first started my work, I rarely heard the phrase
­“disability perspective” in discussions with bioethicists. A three-day
conference might include a single sparsely attended session on disabil-
ity issues. Disability is now part of the conversation. More and more
often, articles by disability experts appear in bioethics journals and
texts. In the past year alone, I have participated in several national bio-
ethics conferences devoted exclusively to disability issues. These devel-
opments give me hope that the field is ripe for change. Nonetheless, the
transformative change I’d like to see – a movement toward a bioethics
that incorporates disability as a central issue and engages disability
experts in the enterprise – will take more than a series of conferences
and articles. The real work will take place on the ground floor – in
medical education, in hospitals, in the courtroom, in law schools, in
government – wherever the work of bioethics is done. This book is my
contribution to that work.
In the end, this is a book about collaboration, which is especially fit-
ting given the teamwork that went into its creation. Although the mis-
takes and omissions are mine alone, I share credit for the worthwhile
sections with many people. I am enormously grateful to my colleagues
at Albany Law School, especially Dede Hill and Christine Chung
who provided invaluable feedback and support in every possible form

xiii
Preface

and at all times of day and night. I am also grateful to Dale Moore
and Kathy Katz for convincing me I had something worthwhile to
say; to James Gathii for being my constant sounding board; and to Tim
Lytton, who always asks the hardest questions. From outside the law
school, I owe special thanks to Bob Baker, who took a chance in giving
me my first position in bioethics, to William Peace, whose challenging
feedback shaped my arguments, and to Kathy Cerminara, Elizabeth
Pendo, Jane Greenlaw, Jennifer Bard, Amy Campbell, Sean Philpott,
and all the others who have commented on drafts, pushed my ideas
forward, or simply disagreed with me. This project would have been
impossible without the incredible efforts of Fredd Brewer and Laurie
Dayter who kept me on task through the years. A special thanks to
Fredd for refusing to let me sweat the small stuff during the last, final
push. I have been fortunate to have the help of many capable student
research assistants over the years. Jessie Cardinale, Alaina Bergerstock,
and Ashley Torre deserve special note for their enormous contribu-
tions to this book.
Sadly, two of the people who taught me most of what I know about
life with disability, Harriet McBryde Johnson and Paul Longmore,
died while I was writing the manuscript. This would not have been the
same book, and I would not be the same person, had I not been lucky
enough to have crossed their paths. Their written contributions and
life examples will continue to educate and inspire generations to come,
but I mourn their early deaths and will forever regret that they did not
live long enough to see how far I’ve come, and to explain the ways I
still don’t get it.
Finally, I thank my family. You gave me the space and strength to
carry on. You are my everything. I hope I’ve done you proud.

xiv
Introduction

A s an appellate attorney working in the New York

State Attorney General’s office, I was assigned a case that involved
an adult woman with profound physical and mental disabilities. The
woman was terminally ill and unable to digest any food or water. After
consulting with her doctors, her family requested that she be allowed
to die without being provided any further nutrition or hydration,
which could be administered – if at all – through an intravenous cath-
eter. Although the provision of nutrition and hydration would extend
her life, the treatment would not change the fact that she was dying.
Instead, it would increase her pain through an extended dying process.
Everyone directly involved in the woman’s medical case – the ­doctors,
family, and ethics consultants – agreed the plan for palliative care and
the termination of the intravenous nutrition and hydration was in the
patient’s best interest. In most states, the treatment plan would have
been carried out and the patient allowed to die peacefully in a matter
of days. Because the patient was in a New York State hospital, however,
and because she had never had capacity to express her own wishes
with respect to end-of-life treatment, the case ended in litigation, which
prolonged her life for several excruciating months.
At the time, New York law did not permit family members or
­doctors to withhold nutrition or hydration from a person who never

1
Introduction

had the capacity to make her own decisions. The state agency charged
with advocating on behalf of persons with mental disabilities sought
representation by the State’s attorney to enforce the law. The client
agency was adamant in its demand that the law requiring the provision
of nutrition and hydration be enforced. In its view, the patient’s family
and doctors wanted to do something that was not legal in New York,
and allowing for any exception to the rule would open the door to the
slippery slope of euthanasia or even a new eugenics. My role was to
support the trial attorney in his representation of the agency and then
to handle any appeal arising after a trial court decision. My job was to
keep the patient alive.
Despite the clear New York rule requiring life-prolonging ­treatment,
there was nothing straightforward about application of the law in this
particular woman’s case. The patient’s family and doctors submitted
evidence that although providing nutrition and hydration would extend
her life, the treatment was medically inappropriate. The woman’s body
was no longer able to digest or metabolize caloric intake. As a result, her
body bloated; her organs deteriorated; her skin stretched to the point
where it fell off; and her condition made pain relief impossible. The
doctors documented the patient’s excruciating journey toward death
in her medical chart. They argued that applying the law as written was
morally wrong, even inhumane. Eventually the trial court judge was
persuaded to put the law aside and issue an order allowing the doc-
tors to stop the treatment. The woman at the center of the litigation
­suffered for months before finally dying, just as an appellate court was
ready to hear arguments.
By the time I wrote the appellate brief and prepared my arguments
for the appellate court, it was clear to me and everyone else on the legal
team that New York’s rigid law was having unintended – even tragic –
consequences. We saw that the patient at the center of our case was
in intractable pain because of the very treatment that was prolonging
her life. In our brief to the appellate court, we modified our position
from the one taken at the trial court, where we vigorously advocated

2
Introduction

application of New York’s law, to one tempered by recognition that the

presence of iatrogenic harm caused by the life-extending treatment
might justify an exception to the rule. It was too little too late. The case
was dismissed without a written decision.
After leaving the Attorney General’s office to begin teaching at a
law school, I wrote a law review article that put together the ideas and
arguments I had been thinking about since my involvement in the
case.1 The paper criticized New York’s end-of-life law for its insistence
that people who had not specifically expressed a desire to forgo life-
prolonging treatment be given life-prolonging treatment. My intent
was to use principles from bioethics to make an argument for disabil-
ity rights at the end of life. Specifically, I argued that New York’s law
was especially harmful to people with cognitive disabilities who could
never express their wishes regarding end-of-life care because the law
made them particularly vulnerable to the horrific death experienced by
the patient in my case. It seemed clear to me that New York’s law hurt
people who never had decision-making capacity because they could
never access medically appropriate comfort care without artificial
nutrition and hydration. I saw the barriers to comfort care as a form of
disability discrimination. In short, I thought I’d written a pro–disability
rights paper.
Although it seems naïve in retrospect, I was shocked and upset
when I received angry e-mails from disability rights activists follow-
ing publication and even angrier responses in person after I presented
my argument at conferences. The activists charged that by advocating
for a change in New York’s laws to allow people with disabilities to die
without the use of all available life-prolonging treatments, I was pro-
moting the myth that life with disability is not worth living. I was cast
as someone complicit in a new eugenics that would kill off people with
disabilities as “useless eaters.”
1
Alicia Ouellette, When Vitalism Is Dead Wrong:€The Discrimination Against and Torture
of Incompetent Patients by Compulsory Life-Sustaining Treatment, 79 Ind. L. J. 1 (2004).
See infra Chapter 7.

3
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