The Struggle: Disability Rights versus Bioethics

Alicia Ouellette

doi:10.1017/CBO9780511978463.003

1 - The Struggle: Disability Rights versus Bioethics

Published online by Cambridge University Press: 07 June 2011

Alicia Ouellette

Show author details

Alicia Ouellette: Affiliation:
Albany Law School

Book contents

Get access

Summary

A disability rights activist once charged, “if i were listing the most dangerous people in the U.S. today, bioethicists, aka medical ethicists, would top my list – way above skinheads, whose beliefs they appear to share.” A different activist testified in a hearing on health reform that the bioethics think tank, the Hastings Center, and the “movement for bioethics … directly continue the eugenics movement that organized Hitler's killing of patients, and other costly and supposedly unworthy people.” The activists' sentiments are not unusual. For the last three decades, an escalating conflict has pitted disability rights activists against bioethics. Despite a common interest in facilitating good medical care, disability rights activists and bioethicists differ sharply in their approach to such issues as how to treat newborns with disabilities, the stunting of growth in children with disabilities, and the removal of life support from patients in persistent vegetative states. These differences manifest in political action, disruptive protests launched at scholarly meetings, and in scholarly papers deeming bioethics “a disabling project.”

The fact of conflict between members of the disability rights and bioethics communities is at the same time surprising and predictable. On the one hand, both bioethics and disabilities studies are disciplines that share a common core commitment to respect for persons and ethical and fair medical decision making. On the other hand, disability experts often approach the same issues from a very different perspective than that of bioethicists.

Type: Chapter
Information: Bioethics and Disability
Toward a Disability-Conscious Bioethics
, pp. 12 - 46

DOI: https://doi.org/10.1017/CBO9780511978463.003 [Opens in a new window]

Publisher: Cambridge University Press

Print publication year: 2011

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Book purchase

Temporarily unavailable

References

Cerminara, Kathy L., Tracking the Storm: The Far-Reaching Power of the Forces Propelling the Schiavo Cases, 35 Stetson L. Rev. 147, 159–77 (2005) (tracking procedural and substantive effects post-Schiavo)Google Scholar PubMed

Kuczewski, Mark & Kirschner, Kristi, Bioethics and Disability: A Civil War?, 24 Theoretical Med. 455 (2003)CrossRef Google Scholar

Newall, Christopher, Disability, Bioethics, and Rejected Knowledge, 31 J. Med. & Phil. 269, 276 (2006)CrossRef Google Scholar

Schneider, Carl E., Hard Cases and the Politics of Righteousness, 35 Hastings Ctr. Rep., May–June 2005, at 24, 26Google Scholar PubMed

Kuczewski, Mark & Kirschner, Kristi, Bioethics and Disability: A Civil War?, 24 Theoretical Med. 455 (2003)CrossRef Google Scholar

Ouellette, Alicia, Disability and the End of Life, 85 Or. L. Rev. 123 (2006) © University of Oregon and is reprinted here with permissionGoogle Scholar

Asch, Adrienne, Distracted by Disability, Cambridge Q. Healthcare Ethics, 77, 81 (Jan. 1988)Google Scholar

Charleton, James I., Nothing About Us Without Us: Disability Oppression and Empowerment (University of California Press 1998)CrossRef Google Scholar

Shapiro, Joseph P., No Pity: People with Disabilities Forging a New Civil Rights Movement (Three Rivers Press 1994)Google Scholar

Fine, Michelle and Asch, Adrienne explore disability from a feminist perspective in Women with Disabilities (Temple University Press 1988)Google Scholar

Eisenland, Nancy L. applies disability theory to liberation theology in The Disabled God: Toward a Liberatory Theology of Disability (Abingdon Press 1994)Google Scholar

Herr, Stanley et al., explore human rights issues in The Human Rights of Persons with Intellectual Disabilities: Different but Equal (Oxford University Press 2003)Google Scholar

Smart, Julie, Disability, Society, and the Individual (Aspen Publishers 2001)Google Scholar

Snyder, Sharon L., Disability Studies, Enabling the Humanities (Modern Language Association of America 2000)Google Scholar

Batavia, Andrew I., Disability and Physician Assisted Suicide, 336 N.E. J. M.1671 (1997)CrossRef Google Scholar PubMed

Mikochik, Steven L., Individual Rights and Reasonable Accommodations under the Americans with Disabilities Act: Assisted Suicide and Disabled People, 46 DePaul L. Rev. 987, 999 (1997)Google Scholar

Bullock, Joan R., Abortion Rights in America, 1994 BYU L. Rev. 63, 70 (1994)Google Scholar PubMed

Alexander, Leo, Medical Science Under Dictatorship, 241 New Eng. J. Med. 39, 44 [1949])CrossRef Google Scholar PubMed

Berry, Roberta M., From Involuntary Sterilization to Genetic Enhancement: The Unsettled Legacy of Buck v. Bell, 12 Notre Dame J.L. Ethics & Pub. Pol'y401, 420–21 (1998)Google Scholar

Silver, Michael G., Eugenics and Compulsory Sterilization Laws: Providing Redress for the Victims of a Shameful Era in United States History, 72 Geo. Wash. L. Rev. 862, 867 (2004)Google Scholar PubMed

Rovner, Laura L., Disability, Equality, and Identity, 55 Ala. L. Rev. 1043 (2004)Google Scholar

Kemp, Evan J., Jr., Op-Ed., Aiding the Disabled: No Pity, Please, N.Y. Times, Sept. 3, 1981, at A19, quoted in Shapiro, supra note 14, at 23–4Google Scholar

Johnson, Harriet McBryde, Honk If You Hate Telethons, inToo Late To Die Young: Nearly True Tales From a Life3, 45–5 (Henry Holt and Co. 2005)Google Scholar

Milani, Adam A., Better Off Dead than Disabled?: Should Courts Recognize a “Wrongful Living” Cause of Action When Doctors Fail to Honor Patients' Advance Directives?, 54 Wash & Lee L. Rev. 149, 210 (1997)Google Scholar PubMed

Singer, Peter & Kuhse, Helga, Should The Baby Live? The Problem of Handicapped Infants iii (Oxford University Press 1985)Google Scholar

Singer, Peter, Making Laws about Making Babies, 15 Hastings Ctr. Rep. 5 (1985)CrossRef Google Scholar PubMed

Singer, Peter & Kuhse, Helga, Ethics and the Handicapped Newborn Infant, 52 Soc. Res. 505, 527–34 (1985)Google Scholar

Singer, Peter, Which Babies Are Too Expensive to Treat?, 1 Bioethics275 (1987)CrossRef Google Scholar PubMed

Annas, George J., “Culture of Life” Politics at the Bedside – The Case of Terri Schiavo, 352 New Eng. J. Med. 1710, 1710–1715 (2005)Google Scholar PubMed

Shepherd, Lois, Terri Schiavo: Unsettling the Settled, 37 Loy. U. Chi. L.J.297 (2006)Google Scholar

Fox, Renee C. & Swazey, Judith P., Observing Bioethics 3532 (Oxford University Press 2008)CrossRef Google Scholar

Rich, Ben A., Strange Bedfellows: How Medical Jurisprudence has Influenced Medical Ethics and Medical Practice (Kluwer Academic 2001)Google Scholar

Veatch, Robert M., The Basics of Bioethics (2d ed., Prentice Hall 2003)Google Scholar

Baker, Robert, Getting Agreement: How Bioethics Got Started, 35 Hastings Center Report50 (May–June 2005)CrossRef Google Scholar

Rothman, David, Strangers at the Bedside (Basic Books 1992)Google Scholar

Jonsen, Albert, The Birth of Bioethics (Oxford University Press 1998); john evans, playing god (University of Chicago Press 2001)Google Scholar

The Story of Bioethics: From Seminal Works to Contemporary Explorations (Walter, Jennifer K. & Klien, Eran P. eds., Georgetown University Press 2003)

Baker, Robert B. & Mc Cullough, Laurence B., The Cambridge World History of Medical Ethics, Part VII, 475–530 (Cambridge University Press 2009); encyclopedia of bioethics (W. T. Reich ed., Macmillan, 1978)Google Scholar

Fadan, Ruth R. & Beauchamp, Thomas L., A History and Theory of Informed Consent (Oxford University Press 1986)Google Scholar

McCullough, Laurence B., Was Bioethics Founded on Historical and Conceptual Mistakes About Medical Paternalism, 25 Bioethics66 (2011)CrossRef Google Scholar PubMed