Table Of ContentTHE DISABILITY BIOETHICS READER
The Disability Bioethics Reader is the first introduction to the field of bioethics presented through
the lens of critical disability studies and the philosophy of disability.
Introductory and advanced textbooks in bioethics focus almost entirely on issues that dis-
proportionately affect disabled people and that centrally deal with becoming or being disabled.
However, such textbooks typically omit critical philosophical reflection on disability. Directly
addressing this omission, this volume includes 36 chapters, most appearing here for the first
time, that cover key areas pertaining to disability bioethics, such as:
• state-of-the-field analyses of modern medicine, bioethics, and disability theory
• health, disease, and the philosophy of medicine
• issues at the edge- and end-of-life, including physician-aid-in-dying, brain death, and
minimally conscious states
• enhancement and biomedical technology
• invisible disabilities, chronic pain, and chronic illness
• implicit bias and epistemic injustice in health care
• disability, quality of life, and well-being
• race, disability, and healthcare justice
• connections between disability theory and aging, trans, and fat studies
• prenatal testing, abortion, and reproductive justice.
The Disability Bioethics Reader, unlike traditional bioethics textbooks, also engages with decades
of empirical and theoretical scholarship in disability studies—scholarship that spans the social
sciences and humanities—and gives serious consideration to the history of disability activism.
Joel Michael Reynolds is Assistant Professor of Philosophy and Disability Studies at George-
town University, Senior Research Scholar in the Kennedy Institute of Ethics, Senior Advisor to
The Hastings Center, and core faculty in Georgetown’s Disability Studies Program. Reynolds is
author of The Life Worth Living: Disability, Pain, and Morality (University of Minnesota Press), the
founder of The Journal of Philosophy of Disability, and co-founder of the Oxford Studies in Disability,
Ethics, and Society book series from Oxford University Press.
Christine Wieseler is Assistant Professor of Philosophy at California State Polytechnic Uni-
versity, Pomona. Wieseler is author of articles published in Hypatia, IJFAB: International Journal
of Feminist Approaches to Bioethics, and Social Philosophy Today as well as chapters in two edited
book collections.
THE DISABILITY BIOETHICS
READER
Edited by Joel Michael Reynolds and Christine Wieseler
Cover image: Rhonda K. Rayman
First published 2022
by Routledge
605 Third Avenue, New York, NY 10158
and by Routledge
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Routledge is an imprint of the Taylor & Francis Group, an informa business
© 2022 Taylor & Francis
The right of Joel Michael Reynolds and Christine Wieseler to be identified as the authors
of the editorial material, and of the authors for their individual chapters, has been asserted
in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this book may be reprinted or reproduced or utilised in any
form or by any electronic, mechanical, or other means, now known or hereafter invented,
including photocopying and recording, or in any information storage or retrieval system,
without permission in writing from the publishers.
Trademark notice: Product or corporate names may be trademarks or registered trademarks,
and are used only for identification and explanation without intent to infringe.
Library of Congress Cataloging-in-Publication Data
A catalog record for this title has been requested
ISBN: 978-0-367-22002-0 (hbk)
ISBN: 978-0-367-22003-7 (pbk)
ISBN: 978-1-003-28948-7 (ebk)
DOI: 10.4324/9781003289487
Typeset in Bembo
by codeMantra
CONTENTS
List of Tables ix
List of Figures x
Notes on Contributors xi
Disability Bioethics: Introduction to The Disability Bioethics Reader 1
Joel Michael Reynolds and Christine Wieseler
PART I
History, Medicine, and Disability 9
1 A Short History of Modern Medicine and Disability 11
Michael Rembis
2 Eugenics, Disability, and Bioethics 21
Robert A. Wilson
3 Theories of Disability 30
Joel Michael Reynolds
PART II
Bioethics: Past and Present 39
4 A Critical History of Bioethics 41
John H. Evans
5 Methods of Bioethics 50
Alison Reiheld
vi Contents
6 Disability Bioethics: From Theory to Practice 61
Rosemarie Garland-Thomson
PART III
Philosophy of Medicine and Phenomenology 71
7 Disability and the Definition of Health 73
Sean Aas
8 The Lived Experiences of Illness and Disability 82
Havi Carel
PART IV
Prenatal Testing and Abortion 93
9 Abortion, Disability Rights, and Reproductive Justice 95
Elizabeth Dietz
10 A Fatal Attraction to Normalizing: Treating Disabilities as Deviations
from “Species-Typical” Functioning 103
Anita Silvers
11 Being Disabled and Contemplating Disabled Children 116
Jackie Leach Scully
12 The Wrongs of ‘Wrongful Birth’: Disability, Race, and Reproductive
Justice 125
Desiree Valentine
PART V
Disability, the Life Course, and Well-Being 135
13 Disability, Ideology, and Quality of Life: A Bias in Biomedical Ethics 137
Ron Amundson
14 The Case of Chronic Pain 147
Emma Sheppard
15 Chronic Illness, Well-Being, and Social Values 156
Lydia Nunez Landry
16 Disability and Age Studies: Obstacles and Opportunities 170
Erin Gentry Lamb
Contents vii
PART VI
Issues at the Edge and End of Life 181
17 Death, Pandemic, and Intersectionality: What the Failures
in an End-of-Life Case Can Teach about Structural Justice
and COVID-19 183
Yolonda Wilson
18 Disorders of Consciousness, Disability Rights, and Triage during the
COVID-19 Pandemic: Even the Best of Intentions Can Lead to Bias 191
Joseph J. Fins
19 Bioethical Issues in Dementia and Alzheimer’s Disease 203
Tia Powell
20 Between “Aid in Dying” and “Assisted Suicide”: Disability Bioethics and
the Right to Die 212
Harold Braswell
21 Theorizing the Intersections of Ableism, Sanism, Ageism and Suicidism
in Suicide and Physician-Assisted Death Debates 221
Alexandre Baril
PART VII
Disability, Difference, and Health Care 233
22 Disability Bioethics and Race 235
Andrea J. Pitts
23 Bioethics and the Deaf Community 243
Teresa Blankmeyer Burke
24 Hunger Always Wins: Contesting the Medicalization of Fat Bodies 254
Anna Mollow
25 Trans Care within and against the Medical-Industrial Complex 263
Hil Malatino
PART VIII
Intellectual and Mental Disabilities 271
26 Defining Mental Illness and Psychiatric Disability 273
Laura Guidry-Grimes
viii Contents
27 Research Ethics and Intellectual Disability: Finding the Middle Ground
between Protection and Exclusion 282
Kevin Mintz and David Wasserman
28 Inconvenient Complications to Patient Choice and Psychiatric
Detention: An Auto-ethnographic Account of Mad Carework 292
Erica Hua Fletcher
29 Disability Bioethics, Ashley X, and Disability Justice for People with
Cognitive Impairments 301
Christine Wieseler
PART IX
Disability Bioethics: Connections and New Directions 313
30 Feminist Theorizing and Disability Bioethics 315
Lauren Guilmette
31 Disability Bioethics and Epistemic Injustice 324
Anita Ho
32 Disability Studies Meets Animal Studies 333
David M. Peña-Guzmán
PART X
The Ends of Medicine: Caring, Curing, and Justice 343
33 Improving Access within the Clinic 345
Nicole D. Agaronnik and Lisa I. Iezzoni
34 The Goals of Biomedical Technology 358
Joseph A. Stramondo
35 “Why Insist on Justice, Why Not Settle for Kindness?” Kindness,
Justice, and Cognitive Disability 367
Eva Feder Kittay
36 Selections of Brilliant Imperfection 377
Eli Clare
Index 391
TABLES
33.1 Sociodemographic Characteristics and Social Determinants of Health by
Disability Status 346
33.2 Health Risks and Other Conditions by Disability Status 348
33.3 Cancer Screening Test Rates by Disability Status 348
