1st Edition
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.
Part I: History, Medicine, and Disability
1. A Short History of Modern Medicine and Disability
Michael Rembis
2. Eugenics, Disability, and Bioethics
Robert Wilson
3. Theories of Disability
Joel Michael Reynolds
Part II: Bioethics: Past & Present
4. A Critical History of Bioethics
John Evans
5. Methods of Bioethics
Alison Reiheld
6. Disability Bioethics: From Theory to Practice
Rosemarie Garland-Thomson
Part III: Philosophy of Medicine & Phenomenology
7. Disability and the Definition of Health
Sean Aas
8. The Lived Experiences of Illness and Disability
Havi Carel
Part IV: Prenatal Testing and Abortion
9. Abortion, Disability Rights, and Reproductive Justice
Elizabeth Dietz
10. A Fatal Attraction to Normalizing: Treating Disabilities as Deviations from “Species-Typical” Functioning
Anita Silvers
11. Being Disabled and Contemplating Disabled Children
Jackie Leach Scully
12. The Wrongs of Wrongful Birth: Disability, Race, and Reproductive Justice
Desiree Valentine
Part V: Disability, The Life Course, and Well-Being
13. Disability, Ideology, and Quality of Life: A Bias in Biomedical Ethics
Ron Amundson
14. The Challenge of Chronic Pain
Emma Sheppard
15. Chronic Illness and Well-Being
Lydia Nunez Landry
16. Disability and Aging Studies: Obstacles and Opportunities
Erin Lamb
Part VI: Issues at the Edge & End of Life
17. Death, Pandemic, and Intersectionality: What the Failures in an End-of-Life Case Can Teach About Structural Justice and COVID-19
Yolonda Wilson
18. Disorders of Consciousness, Disability Rights, and Triage during the COVID-19 Pandemic: Even the Best of Intentions Can Lead to Bias
Joseph J. Fins
19. Bioethical Issues in Dementia and Alzheimer's Disease
Tia Powell
20. Between “Aid in Dying” and “Assisted Suicide”: Disability Bioethics and the Right to Die
Harold Braswell
21. Theorizing the Intersections of Ableism, Sanism, Ageism and Suicidism in Suicide and Physician-Assisted Death Debates
Alexandre Baril
Part VII: Disability, Difference, and Healthcare
22. Disability Bioethics and Race
Andrea Pitts
23. Bioethics and the Deaf Community
Teresa Blankmeyer Burke
24. Hunger Always Wins: Contesting the Medicalization of Fat Bodies
Anna Mollow
25. Trans Care within and against the Medical-Industrial Complex
Hil Malatino
Part VIII: Intellectual and Mental Disabilities
26. Defining Mental Illness & Psychiatric Disability
Laura Guidry-Grimes
27. Research Ethics and Intellectual Disability: Finding the Middle Ground between Protection and Exclusion
Kevin Mintz and David Wasserman
28. Inconvenient Complications to Patient Choice and Psychiatric Detention: An Auto-ethnographoc Account of Mad Carework
Erica Hua Fletcher
29. Disability Bioethics, Ashley X, and Disability Justice for People with Cognitive Impairments
Christine Wieseler
Part IX: Disability Bioethics: Connections & New Directions
30. Feminist Theorizing and Disability Bioethics
Lauren Guilmette
31. Disability Bioethics and Epistemic Injustice
Anita Ho
32. Disability Studies Meets Animal Studies
David Peña-Guzmán
Part X: The Ends of Medicine: Caring, Curing, and Justice
33. Improving Access within the Clinic
Nicole D. Agaronnik and Lisa I. Iezzoni
34. The Goals of Medical Technology
Joseph A. Stramondo
35. "Why insist on justice, why not settle for kindness?" Kindness, justice, and cognitive disability
Eva Feder Kittay
36. Selections of Brilliant Imperfection
Eli Clare
Biography
Joel Michael Reynolds is Assistant Professor of Philosophy and Disability Studies at Georgetown 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 University, 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.
"Covers an impressive range of topics. . . [and] a wealth of diversity in issues, perspectives, and arguments . . . . Overall, this book is an excellent resource, and should be considered by those designing university courses relating to bioethics [and] medical law and ethics."
Heloise Robinson in Medical Law Review