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 disproportionately 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. 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. Cover 1 Half Title 2 Title Page 4 Copyright Page 5 Table of Contents 6 List of Tables 10 List of Figures 11 Notes on Contributors 12 Disability Bioethics: Introduction to The Disability Bioethics Reader 20 PART I: History, Medicine, and Disability 28 1 A Short History of Modern Medicine and Disability 30 2 Eugenics, Disability, and Bioethics 40 3 Theories of Disability 49 PART II: Bioethics: Past and Present 58 4 A Critical History of Bioethics 60 5 Methods of Bioethics 69 6 Disability Bioethics: From Theory to Practice 80 PART III: Philosophy of Medicine and Phenomenology 90 7 Disability and the Definition of Health 92 8 The Lived Experiences of Illness and Disability 101 PART IV: Prenatal Testing and Abortion 112 9 Abortion, Disability Rights, and Reproductive Justice 114 10 A Fatal Attraction to Normalizing: Treating Disabilities as Deviations from “Species-Typical” Functioning 122 11 Being Disabled and Contemplating Disabled Children 135 12 The Wrongs of ‘Wrongful Birth’: Disability, Race, and Reproductive Justice 144 PART V: Disability, the Life Course, and Well-Being 154 13 Disability, Ideology, and Quality of Life: A Bias in Biomedical Ethics 156 14 The Case of Chronic Pain 166 15 Chronic Illness, Well-Being, and Social Values 175 16 Disability and Age Studies: Obstacles and Opportunities 189 PART VI: Issues at the Edge and End of Life 200 17 Death, Pandemic, and Intersectionality: What the Failures in an End-of-Life Case Can Teach about Structural Justice and COVID-19 202 18 Disorders of Consciousness, Disability Rights, and Triage during the COVID-19 Pandemic: Even the Best of Intentions Can Lead to Bias 210 19 Bioethical Issues in Dementia and Alzheimer’s Disease 222 20 Between “Aid in Dying” and “Assisted Suicide”: Disability Bioethics and the Right to Die 231 21 Theorizing the Intersections of Ableism, Sanism, Ageism and Suicidism in Suicide and Physician-Assisted Death Debates 240 PART VII: Disability, Difference, and Health Care 252 22 Disability Bioethics and Race 254 23 Bioethics and the Deaf Community 262 24 Hunger Always Wins: Contesting the Medicalization of Fat Bodies 273 25 Trans Care within and against the Medical-Industrial Complex 282 PART VIII: Intellectual and Mental Disabilities 290 26 Defining Mental Illness and Psychiatric Disability 292 27 Research Ethics and Intellectual Disability: Finding the Middle Ground between Protection and Exclusion 301 28 Inconvenient Complications to Patient Choice and Psychiatric Detention: An Auto-ethnographic Account of Mad Carework 311 29 Disability Bioethics, Ashley X, and Disability Justice for People with Cognitive Impairments 320 PART IX: Disability Bioethics: Connections and New Directions 332 30 Feminist Theorizing and Disability Bioethics 334 31 Disability Bioethics and Epistemic Injustice 343 32 Disability Studies Meets Animal Studies 352 PART X: The Ends of Medicine: Caring, Curing, and Justice 362 33 Improving Access within the Clinic 364 34 The Goals of Biomedical Technology 377 35 “Why Insist on Justice, Why Not Settle for Kindness?” Kindness, Justice, and Cognitive Disability 386 36 Selections of Brilliant Imperfection 396 Index 410 Prenatal testing,abortion,and reproductive justice __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 disproportionately 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.