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8 - Toward a Disability-Conscious Bioethics

Published online by Cambridge University Press:  07 June 2011

Alicia Ouellette
Affiliation:
Albany Law School
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Summary

Throughout this book, i have argued that bioethicists have good reason to work with members of the disability community to resolve ongoing conflicts. The thrust of my argument is that reconciliation is necessary to the work of bioethics insofar as bioethics is concerned with facilitating good medical decision making. Good medical decision making depends on at least three things: trust, knowledge, and communication. As a field, bioethics has emerged as a key player in formulation of policy, resolution of disputes, and creation of educational initiatives that develop trusting relationships, encourage the reliance on objectively verifiable data, and foster clear and open communication between by all parties to medical decision making. Its effectiveness in these roles is undermined at every level (in individual ethics consultations, in policy making, in educational initiatives) by indifference to or ignorance about the contribution of disability scholars to the body of knowledge relevant to good patient care, as well as the perception by some members of the disability community that bioethics as a field works against the interests of people with disabilities. Reconciling the conflict will remove a barrier to this work. True reconciliation will, of course, require engagement of all parties to the conflict. It cannot be forced on any individual. But bioethicists can jump-start the process by developing a deep understanding of the concerns and values of members of the disability community, acknowledging the extent to which bioethics has been insensitive or indifferent to those concerns and the experience of disability, and working to become deliberately conscious of disability-related issues in their work.

Type
Chapter
Information
Bioethics and Disability
Toward a Disability-Conscious Bioethics
, pp. 315 - 366
Publisher: Cambridge University Press
Print publication year: 2011

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References

Newell, Christopher, Disability, Bioethics, and Rejected Knowledge, 31 J. Med. & Phil. 269, 275 (2006) (charging that bioethics is a “disabling … project.”)CrossRefGoogle ScholarPubMed
Parens, Erik, Respecting Children with Disabilities – and Their Parents, 39 Hastings Center Rep., Jan.–Feb. 2009, at 22, 22CrossRefGoogle ScholarPubMed
Asch, Adrienne, Disability, Bioethics, and Human Rights, inHandbook of Disability Studies 297, 299 (Albrecht, Gary L. et al. eds., Sage Publications, Inc. 2001)Google Scholar
Silvers, Anita, Formal Justice, inDisability, Difference, Discrimination: Perspectives on Justice in Bioethics and Public Policy, 95–106 (Rowman & Littlefield Publishers 1998) (contrasting neediness with interdependence)Google Scholar
Cerminara, Kathy L., Critical Essay: Musings on the Need to Convince Some People with Disabilities that End-of-Life Decision-Making Advocates Are Not Out to Get Them, 37 Loy. U. Chi. L. J. 343 (2006)Google Scholar
Beauchamp, Tom L. & Childress, James F., Principles of Biomedical Ethics (6th ed., Oxford University Press 2009) for an extended discussionGoogle Scholar
Albrecht, G.L. & Deulieger, P.J., The Disability Paradox: High Quality of Life Against All Odds, 48(8) Soc. Sci. & Med. 977 (1999)CrossRefGoogle ScholarPubMed
Saigal, S. et. al., Self-perceived Health Status and Health Related Quality of Life of Extremely Low-Birth-weight Infants at Adolescence, 276(6) J.A.M.A.453 (1996)CrossRefGoogle ScholarPubMed
Bach, J.R. & Tilton, M.C., Life Satisfaction and Well-Being Measures in Ventilator Assisted Individuals with Traumatic Tetraplegia, 75(6) Arch. Phys. Med. Rehabilitation626 (1994)Google ScholarPubMed
Davis, Lennard J., Enforcing Normalcy: Disability, Deafness, and the Body (Verso 1995)Google Scholar
Davis, Lennard J. & Berube, Michael, Bending Over Backwards: Essay on Disability and the Body (NYU Press 2002)Google Scholar
Thomson, Rosemarie Garland, Extraordinary Bodies (Columbia Univ. Press 1996)Google Scholar
Mairs, Nancy, Waist-High in the World: A Life Among the Nondisabled (Beacon Press 1996)Google Scholar
Deviant Bodies: Critical Perspectives on Difference in Science and Popular Culture (Terry, Jennifer & Urla, Jacqueline L. eds., Indiana Univ. Press 1995)Google Scholar
Johnson, Harriet McBryde, Too Late to Die Young: Nearly True Tales from a Life (Picador 2006)Google Scholar
Dreger, Alice Domurat, One of Us: Conjoined Twins and the Future of Normal (Harvard Univ. Press 2005)Google Scholar
Disability/Postmodernity: Embodying Disability Theory (Corker, Mairian & Shakespeare, Tom eds., Continuum 2002)Google Scholar
Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality (Parens, Eric ed., Johns Hopkins Univ. Press 2008)Google Scholar
Davis, Kathy, Dubious Equalities & Embodied Differences: Cultural Studies on Cosmetic Surgery (Rowman & Littlefield Publishers 2003)Google Scholar
Miniham, P. M. et al., Teaching about Disability: Involving Patients with Disabilities as Medical Educators, 24 Disability Studies Q. 4 (2004)Google Scholar
Kirschner, Kirsten L. et al., Educating Health Care Professionals to Care for Patients with Disabilities, 302(12) J.A.M.A.1334 (2009)CrossRefGoogle ScholarPubMed
Claxton, A., Teaching Medical Students about Disability, 308 B.M.J.805 (1994)CrossRefGoogle ScholarPubMed
Crouch, Robert A., Letting the Deaf Be Deaf: Reconsidering the Use of Cochlear Implants in Prelingually Deaf Children, 27 Hastings Center Rep., July–Aug. 1997, at 14, 17 (arguing that the predominant notion “that the deaf are ‘merely and wholly’ disabled – is wrong and that we should quickly disabuse ourselves of this ill-begotten notion”)CrossRefGoogle ScholarPubMed
Willford, Benjamin S., et. al., Navigating Growth Attenuation in Children with Profound Disabilities: Children's Interests, Family Decision-Making, and Community Concerns, 40 Hastings Center Rep., Nov.-Dec. 2010, 27–40Google Scholar
Ouellette, Alicia, Growth Attenuation, Parental Choice, and the Rights of Disabled Children: Lessons from the Ashley X Case, 8 Hous. J. Health L. & Pol'y207, 241–242 (2008)Google Scholar
Dreger, Alice, Ashley and the Dangerous Myth of the Selfless-Parent, Hastings Center Bioethics Forum, Jan. 18, 2007, http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=332#ixzz0sTtVWjm7Google Scholar
Albrecht, Gary L. & Devlieger, Patrick J., The Disability Paradox: High Quality of Life Against All Odds, 48 Soc. Sci. & Med. 977, 980 (1999) (“Individuals, families, and communities are unprepared to recognize and seldom ready to accept disability.”)CrossRefGoogle ScholarPubMed
Patterson, David R. et al., When Life Support Is Questioned Early in the Care of Patients with Cervical-Level Quadriplegia, 329 New Eng. J. Med. 663, 663 (1993) (“Patients frequently have a diminished capacity to make important decisions during the first several months after an injury….”)Google Scholar

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