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Disability, “Being Unhealthy,” and Rights to Health

Published online by Cambridge University Press:  01 January 2021

Jerome Bickenbach
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Extract

Often advocates for persons with disabilities are resistant to what might appear to be the banal truism that, at bottom, disability is a decrement in health. Disability advocates have long objected to the “medicalization” of disability, when that means focusing entirely on a person’s underlying impairments and ignoring all of the manifold obstacles in his or her environment — e.g., physical, human-built, attitudinal, social, political, and cultural — that makes living with those impairments at least disadvantageous and socially devalued. Over-medicalization is another and well understood problem that people with disabilities are justifiably concerned about. Yet it is somewhat of a mystery why anyone with an impairment would ever deny, or feel uncomfortable being told, that their impairment is a health problem. Surely, people with disabilities are unhealthy, by virtue of their impairments and to the degree according to the severity of those impairments. How could it be otherwise?

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 41 , Issue 4 , Winter 2013 , pp. 821 - 828
Copyright
Copyright © American Society of Law, Medicine and Ethics 2013

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References

Convention on the Rights of Persons with Disabilities, G.A. Res. 61/106 (2006) available at <http://www.un.org/esa/socdev/enable/rights/convtexte.htm> (last visited October 17, 2013).+(last+visited+October+17,+2013).>Google Scholar
Pfeiffer, D., “The ICIDH and the Need for Its Revision,” Disability and Society 13, no. 4 (1998): 503–523.CrossRefGoogle Scholar
Häyry, M., “The Moral Contestedness of Selecting ‘Deaf Embryos,’” in Kristjana, K. Vehmas, S. Shakespeare, T., eds., Arguing about Disability: Philosophical Perspectives (London: Routledge, 2009): At 154–168.Google Scholar
Amundson, R., “Against Normal Function,” Studies in the History and Philosophy of Biology and Biomedical Science 31, no. 1 (2001): 33–53.CrossRefGoogle Scholar
World Health Organization, World Report on Disability, Geneva, 2011.Google Scholar
Shakespeare, T. Iezzoni, L. I. Groce, N. E., “The Art of Medicine: Disability and the Training of Health Professionals,” The Lancet 374, no. 9704 (2009): 1815–1816.CrossRefGoogle Scholar
Shakespeare, T., “Still a Health Issue,” Disability and Health Journal 5, no. 3 (2012): 129–131.CrossRefGoogle Scholar
CDC, “Disability and Health: Health Living,” available at <http://www.cdc.gov/ncbddd/disabilityandhealth/healthyliving.html> (last visited October 17, 2013).+(last+visited+October+17,+2013).>Google Scholar
U.S. Department of Health and Human Services, Office of the Surgeon General, “The Surgeon General's Call to Action to Improve the Health and Wellness of Persons With Disabilities,” Washington, D.C., 2005.Google Scholar
Union of the Physically Impaired Against Segregation, Fundamental Principles of Disability, London, 1976; Oliver, M., The Politics of Disablement (Basingstoke: Macmillan, 1990).CrossRefGoogle Scholar
World Health Organization, Constitution of the World Health Organization, 2006, available at <www.who.int/governance/eb/who_constitution_en.pdf> (last visited September 10, 2013).+(last+visited+September+10,+2013).>Google Scholar
Callahan, D., “The WHO Definition of ‘Health,’” Studies of the Hastings Center 1, no. 3 (1973): 77–88.CrossRefGoogle Scholar
Boorse, C., “On the Distinction between Disease and Illness,” Philosophy and Public Affairs 5, no. 1 (1975): 49–68; Boorse, C.,. “Wright on Functions,” Philosophical Review 85, no. 1 (1976): 70–86; Boorse, C., “Health as a Theoretical Concept Source,” Philosophy of Science 44, no. 4 (1977): 542–573.Google Scholar
Nordenfelt, L., On the Nature of Health: An Action-Theoretical Approach (Dordrecht: Reidel, 1987).CrossRefGoogle Scholar
See, e.g., Shakespeare, T., Disability Rights and Wrongs (London: Routledge, 2006).CrossRefGoogle Scholar
Emerson, E. et al., Intellectual and Physical Disability, Social Mobility, Social Inclusion and Health, Center for Disability Research, Lancaster University, UK, 2009.Google Scholar
Lollar, D. J., “Public Health and Disability: Emerging Opportunities,” Public Health Report 117, no. 2 (2002): 131–1362; Wilber, N. Mitra, M. Walker, D. K. Allen, D. Meyers, A. R. Tupper, P., “Disability as a Public Health Issue: Findings and Reflections from the Massachusetts Survey of Secondary Conditions,” Milbank Quarterly 80, no. 2 (2002): 393–421; Kinne, S. Patrick, D. L. Doyle, D. L., “Prevalence of Secondary Conditions among People with Disabilities,” American Journal of Public Health 94, no. 3 (2004): 443–445; see WHO, supra note 5.CrossRefGoogle Scholar
Scotch, R. K., From Good Will to Civil Rights: Transforming Federal Disability Policy, 2nd ed. (Philadelphia: Temple University Press, 1984/2001); Driedger, D., The Last Civil Rights Movement (London: Hurst, 1989); Bickenbach, J. E., Physical Disability and Social Policy (Toronto: University of Toronto Press, 1993); Braddock, D. Parish, S., “An Institutional History of Disability,” in Albrecht, G. L. Seelman, K. D. Bury, M., eds., Handbook of Disability Studies (Thousand Oaks, CA: Sage, 2001): 11–68; Bickenbach, J. E., Ethics, Law, and Policy, vol. 4 of The SAGE Reference Series on Disability: Key Issues and Future Directions (Thousand Oaks, CA: Sage, 2012).Google Scholar
See, e.g., Abberley, P., “The Concept of Oppression and the Development of a Social Theory Disability,” Disability, Handicap and Society 2, no. 1 (1987): 5–19; Morris, J., Pride against Prejudice: Transforming Attitudes to Disability (London: The Women's Press, 1991); Hughes, B. Paterson, K., “The Social Model of Disability and the Disappearing Body: Towards a Sociology of Impairment,” Disability and Society 12, no. 3 (1997): 325–340; Shakespeare, T. Watson, N., “The Social Model of Disability: An Outmoded Ideology?” in Barnartt, S. N. Altman, B. M., Research in Social Science and Disability, vol. 2. (Bingkey, UK: Emerald Group Publishing, 2001): At 9–28; See Shakespeare, , supra note 14.CrossRefGoogle Scholar
See, e.g., Ville, et al., “Self Representations and Physical Impairment: A Social Constructionist Approach,” Sociology of Health & Illness 16, no. 3 (1994): 301–321; Tighe, C. A., “Working at Disability: A Qualitative Study of the Meaning of Health and Disability for Women with Physical Impairments,” Disability and Society 16, no. 4 (2001): 511–529; Putnam, M. Geenen, S. Powers, L., “Health and Wellness: People with Disabilities Discuss Barriers and Facilitators to Well Being,” Journal of Rehabilitation 69, no. 1 (2003): 37–45; Drum, C. E. Krahn, G. Culley, C. Hammond, L., “Recognizing and Responding to the Health Disparities of People with Disabilities,” California Journal of Health Promotion 3, no. 3 (2005): 29–42; Nazli, A., “‘I'm Healthy”’: Construction of Health in Disability,” Disability and Health Journal 5, no. 4 (2012): 233–240.CrossRefGoogle Scholar
Nagi, S. Z., “Some Conceptual Issues in Disability and Rehabilitation,” in Sussman, M. B., ed., Sociology and Rehabilitation, American Sociological Association, Washington, D.C., 1965; Nagi, S. Z., Disability and Rehabilitation: Legal, Clinical and Self-Concepts and Measurement (Columbus, OH: Ohio State University Press, 1969); Nagi, S. Z., “The Concept and Measurement of Disability,” in Berkowitz, E. D., ed., Disability Policies and Government Programs (New York: Praeger, 1979): At 1–15; Nagi, S. Z., “Disability Concepts Revisited: Implications for Prevention,” in Pope, A. M. Tarlov, A. R., eds., Disability in America: Toward a National Agenda for Prevention (Washington, D.C.: Institute of Medicine National Academy Press, 1991): At 309–327.Google Scholar
Id. (Pope and Tarlov).Google Scholar
Verbrugge, L. M. Jette, A. M., “The Disablement Process,” Social Science and Medicine 38, no. 1 (1994): 1–14.CrossRefGoogle Scholar
WHO, International Classification of Functioning, Disability and Health, Geneva, 2001.Google Scholar
Peters, F. E., Greek Philosophical Terms: A Historical Lexicon (New York: New York University, 1967).Google Scholar
See, e.g., Aristotle, Nicomachean Ethics, trans. by Ross, W. D. (Oxford: Oxford University Press, 1980): At Book 1, 1097b22–1098a20.CrossRefGoogle Scholar
See, e.g., Clancy, C. M. Eisenberg, J. M., “Outcomes Research: Measuring the End Results of Health Care,” Science 282 (1998): 245–246;. Patrick, D. L. Chiang, Y. P., “Measurement of Health Outcomes in Treatment Effectiveness Evaluations: Conceptual and Methodological Challenges,” Medical Care 38, sup. II (2000): 14–25.CrossRefGoogle Scholar
Drum, C. E. Horner-Johnson, W. Krahn, G. L., “Self-Rated Health and Healthy Days: Examining the ‘Disability Paradox,’” Disability and Health Journal 1, no. 2 (2008): 71–78; Krahn, G., “Changing Concepts in Health, Wellness and Disability,” in Rehabilitation Research & Training Center: Health and Wellness Consortium, State of the Science Proceedings (Portland, OR: Oregon Health & Science University, 2003); Krahn, G. L. Fujiura, G. Drum, C. E. Cardinal, B. J. Nosek, M. A., “The Dilemma of Measuring Perceived Health Status in the Context of Disability,” Disability and Health Journal 2, no. 2 (2009): 49–56.CrossRefGoogle Scholar
Patrick, D. L. Kinne, S. Engelberg, R. A. Pearlman, R. A., “Functional Status and Perceived Quality of Life in Adults with and without Chronic Conditions,” Journal of Clinical Epidemiology 53, no. 8 (2000): 779–785; see Drum, et al., supra note 42; Drum, et al., supra note 26.CrossRefGoogle Scholar
McDermott, S. Turk, M. A. Margaret, , “The Myth and Reality of Disability Prevalence: Measuring Disability for Research and Service,” Disability and Health Journal 4, no. 1 (2011): 1–5.CrossRefGoogle Scholar
See Krahn, et al., supra note 28.Google Scholar
See supra note 24.Google Scholar
See Boorse, C., “Disability and Medical Theory,” in Ralston, C. D. Ho, J., eds., Philosophical Reflections on Disability (New York: Springer, 2010): At 55–90.Google Scholar
See Drum, et al., supra note 42; Krahn, et al., supra note 26.Google Scholar
Salomon, J. A. Mathers, C. D. Chatterji, S. Sadana, R. Ustun, T. B. Murray, C. J. L., “Quantifying Individual Levels of Health: Definitions, Concepts, and Measurement Issues,” in Murray, C. J. L. Evans, D. B., eds., Health Systems Performance Assessment: Debates, Methods and Empiricism (Geneva: World Health Organization, 2003): At 301–318.Google Scholar
See Pfeiffer, , supra note 1; see Amundson, , supra note 4; Silvers, A., ‘“Defective” Agents: Equality, Difference and the Tyranny of the Normal,” Journal of Social Philosophy, 25th Anniversary Special Issue (1994): 154–175.CrossRefGoogle Scholar
Englehardt, H. T. Jr., The Foundations of Bioethics (New York: Oxford University Press, 1986).Google Scholar
Wasserman, D., “Philosophical Issues in the Definition and Social Response to Disability,” in Albrecht, G. Seelman, K. D. Bury, M., eds., Handbook of Disability Studies (Thousand Oaks, CA: Sage, 2001): At 219–251.CrossRefGoogle Scholar
Asch, A., “Disability, Bioethics and Human Rights,” in Albrecht, G. Seelman, K. D. Bury, M., eds., Handbook of Disability Studies (Thousand Oaks, CA: Sage, 2001): At 297–326.CrossRefGoogle Scholar
See supra note 5.Google Scholar