The Disability Bioethics Reader PDF
Preview The Disability Bioethics Reader
THE 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 4 Park Square, Milton Park, Abingdon, Oxon, OX14 4RN 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
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