In this paper, we critically appraise institutions for people with disabilities, from residential facilities to outpatient clinics to social organizations. While recognizing that a just and inclusive society would reject virtually all segregated institutional arrangements, we argue that in contemporary American society, some people with disabilities may have needs that at this time can best be met by institutional arrangements. We propose ways of reforming institutions to make them less isolating, coercive, and stigmatizing, and to provide forms of social support the larger society denies many people with disabilities. Although these reforms far fall far short of abolition, they draw heavily on the work of disability scholars and advocates who call for the complete replacement of institutional arrangements with systems of supported living. The consideration of non-ideal-solutions is useful not only in reforming existing institutional arrangements, but in bringing disability scholarship and advocacy to bear on bioethics, which has paid little attention to institutions for people with disabilities. We intend this paper to redress the neglect within mainstream bioethics of the complex ethical problems posed by institutions.
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We use the terms “persons with disabilities”, “people with disabilities,” “disabled persons” and “disabled people” interchangeably. We recognize that this is controversial, that there are good reasons for preferring one set of terms to the other. Unfortunately, there are good reasons for preferring each set, and different sets predominate in different countries and disability communities. We have attempted neutrality on this issue, not because we consider it unimportant, but because we think it is too important to address in a paper with a different focus. At the same time, we wish to make it clear that in using “people with disabilities,” we do not endorse the view that disabilities should be understood as an attribute of the individual—any more than in using the term “disabled people”, we endorse the view that people are defined by their disabilities. Each of these terms has been adopted to avoid or challenge the offensive connotations of other terms, and the use of each term can make an important substantive point about disability as a political and social phenomenon.
Callahan, D. (1998). Families as caregivers: The limits of morality. Archives of Physical Medicine and Rehabilitation, 69, 13–18.
Arras, J., & Dubler, N. (1995). Bringing the hospital home: Ethical and social implications of high-tech home care. In J. Arras (Ed.), Bringing the hospital home: Ethical and social implications of high-tech home care (pp. 1–34). Baltimore: Johns Hopkins University Press.
Goffman, E. (1961). Asylums: Essays on the social situations of mental patients and other inmates. Garden City: Anchor Books.
Johnson, H. M. (2003). The disability Gulag. The New York Times Magazine, November 23, pp. 58–64.
Ferguson, D. (1998). Relating to self-determination: One parent’s thoughts. The Journal of the Association for Persons with Severe Handicaps, 23, 44–46.
Ferguson, P. M., & Ferguson, D. L. (1996). Communicating adulthood: The meanings of independent living for people with significant cognitive disabilities and their families. Topics in Language Disorders, 16(3), 52–67.
Lehr, D. E., & Brown, F. (Eds.) (1996). In People with disabilities who challenge the system. Baltimore: Paul H. Brookes.
Statement of Karen Greebon, February 3 1992. Retrieved November, 2007 from http://www.adapt.org/karen.htm.
Thomas, S. (2007). I’d rather go to jail than die in a nursing home. Retrieved November from: http://www.adapt.org/rather.htm.
Litvak, S., Zukas, , Hail, , & Heumann, J. E. (1987). Attending to America: Personal assistance for independent living. Berkeley, CA: World Institute on Disability.
N. S. Crewe, I. K. Zola (Eds.) (1983). Independent living for physically disabled people: Developing, implementing, and evaluating self-help rehabilitation programs. San Francisco, CA: Jossey-Bass.
Ratzka, A. (2007). What are direct payments? In independent living institute newsletter, 2003; 10. Retrieved October 2007 from: http://www.independentliving.org/newsletter/10-03.html.
Thomas, S. (2007). A disability perspective on home health care. Retrieved November 2007 from: http://www.adapt.org/homehealth.htm.
Bender, T. (1978). Community and social change in America pp. 3–4. Baltimore: Johns Hopkins University Press.
Fischer, C., et al. (1977). Networks and places social relations in the urban setting. New York: Free Press.
Wasserman, D. (1999). Self-help groups, community, and civil society. In R. Fullinwider (Ed.), Civil society, democracy, and civic renewal. Lanham: Roman & Littlefield.
Schor, J. (1991). The overworked American: The unexpected decline of leisure. New York: Basic Books.
Hochshield, A. R. (2000). The time bind: When work becomes home and home becomes work. New York: Henry Holdt and Company.
Asch, A. (1993). Abused or neglected clients—Or abusive or neglectful service systems? In R. A. Kane, & A. L. Caplan (Eds.), Ethical conflicts in the management of home care (pp. 113–121). New York: Springer.
Mairs, N. (1997). Waist-high in the world: A life among the nondisabled. Boston: Beacon Press.
This paper grew out of a project entitled Disability: Philosophy, Bioethics, and Policy, funded by the New York Community Trust. We are grateful for their support. We are also grateful for the helpful suggestions of the editor and two anonymous reviewers.
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Asch, A., Blustein, J. & Wasserman, D.T. Criticizing and Reforming Segregated Facilities for Persons with Disabilities. Bioethical Inquiry 5, 157–167 (2008). https://doi.org/10.1007/s11673-008-9104-7