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Medical Decision Making and People with Disabilities: A Clash of Cultures

Published online by Cambridge University Press:  01 January 2021

Extract

In discussions of medical decision making as it applies to people with disabilities, a major obstacle stands in the way: the perceptions and values of disabled people (particularly disability rights advocates and disabled social scientists) and of many nondisabled people (particularly health care professionals, ethicists, and health policy analysts), regarding virtually the whole range of current health and medical-ethical issues (treatment decision making, health care access and health care rationing, medical costcontainment, and assisted suicide), seem frequently to conflict with one another. This divergence in part grows out of the sense, common among people with disabilities, that their interactions with “the helping professions,” medical and social service professionals, are adversarial. But those differences of opinion also stem more basically from a clash of fundamental values.

This paper addresses, in historical perspective, the ways in which the status of persons with disabilities as a stigmatized minority group affects medical decision making. It also examines the efforts of disability rights activists to prevent discrimination against persons with disabilities in current medical culture. Finally, it raises questions about how the rights of people with disabilities will fare as new care standards are developed and implemented.

Type
Article
Copyright
Copyright © American Society of Law, Medicine and Ethics 1995

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References

Louis Harris and Associates, ICD Survey of Disabled Americans (New York: International Center for the Disabled, 1986), pp. 112, 114.Google Scholar
For general statements of the medical and minority group models and their contemporary and historical applications, see: Finkelstein, Victor, Attitudes and Disabled People: Issues for Discussion (New York: World Rehabilitation Fund, 1980); Gliedman, John Roth, William, The Unexpected Minority, Handicapped Children in America (New York: Harcourt Brace Jovanovich, 1982), pp. 1-51; Longmore, Paul K., “The Life of Randolph Bourne and the Need for a History of Disabled People,” Reviews in American History, 13, no. 4 (1985): 581-87; Longmore, Paul K., “Uncovering the Hidden History of Disabled People,” Reviews in American History, 15, no. 3 (1987): 355-64; and Roth, William, “Handicap as a Social Construct,” Society, 20, no. 3 (1983): 56-61.Google Scholar
Gallagher, Hugh, FDR's Splendid Deception (New York: Dodd, Mead, 1985); Lane, Harlan, When the Mind Hears: A History of the Deaf (New York: Random House, 1985); Longmore, (1987), supra note 1; Paden, Carol Humphreys, Tom, Deaf in America: Voices From a Culture (Cambridge: Harvard University Press, 1988); Phillips, William R.F. Rosenberg, Janet, eds., Changing Patterns of Law: The Courts and the Handicapped (New York: Arno Press, 1980); Tyor, Peter L. Bell, Leland V., Caring for the Retarded in America: A History (Westport: Greenwood Press, 1985); Van Cleve, John Vickery, ed., Deaf History Unveiled: Interpretations from the New Scholarship (Washington, D.C.: Gallaudet University Press, 1993); Van Cleve, John Vickery Couch, Barry, A Place of Their Own: Creating the Deaf Community in America (Washington, D.C.: Gallaudet University Press, 1989); Wolfensberger, Wolf, The Origin and Nature of Our Institutional Models (Syracuse: Human Policy Press, 1975); and Chicago, Illinois, Municipal Code, 1896, §§ 36–34 (repealed 1974), quoted in Marcia Pearce Burgdorf and Burgdorf, Robert Jr., “A History of Unequal Treatment: The Qualifications of Handicapped Persons as a ‘Suspect Class’ Under the Equal Protection Clause,” Santa Clara Law Review, 15, no. 4 (1975): 863-64.Google Scholar
On the history of public disability welfare and insurance policy, see: Berkowitz, Edward McQuaid, Kim, Creating the Welfare State: The Political Economy of Twentieth-Century Reform (Lawrence: University Press of Kansas, 1980); Berkowitz, Edward, Disabled Policy: America's Programs for the Handicapped (New York: Cambridge University Press, 1987); Hahn, Harlan, “Rehabilitation and Public Policy,” American Behavioral Scientist, 28, no. 3 (1985): 93-318; and Stone, Deborah, The Disabled State (Philadelphia: Temple University Press, 1986).Google Scholar
Bowe, Frank, Handicapping America (New York: Harper and Row, 1982); Bowe, Frank, Rehabilitating America (New York: Harper and Row, 1984); Parry, J., ed., Mental Disability Law: A Primer (Washington, D.C.: ABA, 1984); and Rothstein, Laura F., Rights of Physically Handicapped Persons (Colorado Springs: Shepherd's/McGraw-Hill, 1984, Supp. 1987).Google Scholar
Eisenberg, Myron G. Griggins, Cynthia Duval, Richard J., eds., Disabled People as Second-Class Citizens (New York: Springer, 1982); and Crewe, Nancy M. Zola, Irving K., eds., Independent Living for Physically Disabled People (San Francisco: Addison-Wesley, 1983).Google Scholar
Percy, Stephen, Disability, Civil Rights and Public Policy: The Politics of Implementation (University, AL: University of Alabama Press, 1992); and Shapiro, Joseph, No Pity: People with Disabilities Forging a New Civil Rights Movement (New York: Times Books, 1993).Google Scholar
Rothstein, , supra note 5, pp. 79-108; Reed, Gale N., “Equal Access to Mass Transportation for the Handicapped,” Transportation Law Journal, 9 (1977): 167; Bowe, , supra note 5, pp. 19–21; and Scotch, Richard K., From Good Will to Civil Rights: Transforming Federal Disability Policy (Philadelphia: Temple University Press, 1985).Google Scholar
See “Summary and Analysis,” Mental Disability Law Reporter, 5 (1981): 7578, 302-04.Google Scholar
For example, O’Connor, v. Donaldson, 422 U.S. 563 (1975) (state cannot constitutionally confine person who is not dangerous and is able with assistance from others to live by himself); Wyatt v. Stickney, 325 F. Supp. 781, 334 F. Supp. 1341 (Ala, M.D. 1971), 344 F. Supp. 373 (Ala, M.D. 1972), aff’d sub. nom, Wyatt v. Aderholt, 503 F.2d 1305 (5th Cir. 1974) (institutionalized mentally disabled people have constitutional right to adequate treatment and habilitation); New York State ARC v. Carey, 393 F. Supp. 715 (E.D. N.Y. 1975), modified, 706 F.2d 956 (2d Cir. 1983) (institutionalized mentally retarded persons have right to protection from harm and to minimum quality of care); Halderman v. Pennhurst State School and Hospital, 446 F. Supp. 1295 (Pa, E.D. 1977) (mentally retarded citizens have constitutional right to minimally adequate habilitation in least restrictive environment, which required they be served in community settings and that Pennhurst be closed), modified, 612 F.2d 84 (3d Cir. 1979) (finding a right to minimally adequate habilitation in least restrictive environment in Developmentally Disabled Assistance and Bill of Rights Act), rev’d and rem’d, Pennhurst State School and Hospital v. Halderman, 451 U.S. 1 (1981), aff’d prior judgment on state law grounds, Halderman v. Pennhurst State School and Hospital, 673 F.2d 647 (3d Cir. 1982), rev’d and rem’d, Pennhurst State School and Hospital v. Halderman, 465 U.S. 89 (1984) (Eleventh Amendment precludes federal court from exercising jurisdiction in suit for injunctive relief based on state law and brought against state officials); and Pennsylvania Association for Retarded Children v. Pennsylvania, 324 F. Supp. 1257 (E.D. Pa. 1971) (retarded children entitled to an “appropriate” program of education and training).Google Scholar
Board of Education of the Hendrick Hudson Cent. School District v. Rowley, 458 U.S. 176 (1982) (ruling that the Education for All Handicapped Children Act does not entitle the student to education that will maximize her potential, but guarantees only an education that minimally conforms to state standards).Google Scholar
Pennhurst State School and Hospital v. Halderman, 451 U.S. 1 (1981) (ruling that states receiving funds under the Developmental Disabilities Act are not thereby obligated to provide developmentally disabled citizens with treatment and habilitation in the least restrictive environment).Google Scholar
Bowen v. American Hospital Association, 106 S. Ct. 2101 (1986) (ruling that hospitals’ withholding of necessary medical treatment from a handicapped infant does not violate § 504's prohibition against discrimination on the basis of handicap when the parents have not consented to the needed medical procedure).Google Scholar
Keating, Robert, “The War Against the Mentally Retarded,” New York, Sept. 17, 1979, at 87.Google Scholar
Kuhse, Helga Singer, Peter, Should the Baby Live? The Problem of Handicapped Infants (New York: Oxford University Press, 1985); and Singer, Peter, Practical Ethics (New York: Cambridge University Press, 1979).Google Scholar
Hershey, Laura, “Once Again, a Politician Calls our Basic Needs Too Costly, and Unimportant,” Denver Post, May 28, 1992, at 7B.Google Scholar
Biklen, Douglas Bailey, Lee, eds., Rudely Stamp'd: Imaginal Disability and Prejudice (Washington, D.C.: University Press of America, 1981); Bogdan, Robert, Freak Show: Presenting Human Oddities for Amusement and Profit (Chicago: University of Chicago Press, 1988); Hahn, Harlan, Testimony, in United States Civil Rights Commission, Protection of Handicapped Newborns, Hearing Held in Washington, D.C., June 12–14, 1985 (Washington, D.C.: U.S. Government Printing Office, 1985), pp. 116-20; Longmore, Paul K., “Screening Stereotypes: Images of Disabled People in Television and Motion Pictures,” Social Policy, 16, no. 1 (1985): 31-37; and Longmore, Paul K., “Elizabeth Bouvia, Assisted Suicide, and Social Prejudice,” Issues in Law and Medicine, 3, no. 2 (1987): 141-70.Google Scholar
Sally Jessie Raphael, KCAL (Los Angeles), June 14, 1990.Google Scholar
Longmore, Paul K., “The Strange Death of David Rivlin,” Western Journal of Medicine, 154 (1991): 615–16.Google Scholar
Polio Survivors Newsletter (Dec. 1992–Jan. 1993), p. 1.Google Scholar
Longmore, , supra note 19, p. 616.Google Scholar
Johnson, Mary, “Killing Babies: Left and Right,” Disability Rag, 6 (1985): 2223; Cook, Timothy M., “Disability Law: Medical Treatment—Who Decides?,” Mainstream, 11, no. 5 (1987): 19; Ross, Sonya, “Rulings for Suicide Disturb Disabled,” The Oregonian, Sept. 13, 1989; Gill, Carol J., “Suicide Intervention for People with Disabilities: A Lesson in Inequality,” Issues in Law & Medicine, 8, no. 1 (1992): 37-53; Gill, Carol J., “‘Right to Die’ Threatens Our Right to Live Safe and Free,” Mainstream, 16, no. 11 (1992): 32-36.Google Scholar
Gill, Carol J., “The Family/Professional Alliance in Rehabilitation Viewed from a Minority Perspective,” American Behavioral Scientist, 28, no. 3 (1985): 424–28; Gill, Carol J., “Disability and the Family,” Mainstream, 18, no. 13 (1994): 30-35; and Hahn, , supra note 17.CrossRefGoogle Scholar
See Fletcher, , “Attitudes Towards Defective Newborns,” unpublished manuscript, pp. 2527.Google Scholar
Wright, Beatrice, “Attitudes and the Fundamental Negative Bias: Conditions and Corrections,” in Yuker, Harold E., ed., Attitudes Towards Persons with Disabilities (New York: Springer, 1988), pp. 89.Google Scholar
Id., p. 9.Google Scholar
Id., p. 10.Google Scholar
Kuhse, Singer, , supra note 15, pp. 3536.Google Scholar
Cook, , supra note 22, p. 19.Google Scholar
See “Leaving Disabled People Out Prompts Boycott Call,” Disability Rag, 6, no. 7 (1985): 11; see also Strong, Frances, Letter, Disability Rag, 7, no. 2 (1986): 36.Google Scholar
See “Panel on Assisted Suicide Split as Rest of Society,” San Francisco Examiner, Mar. 6, 1994, at A6.Google Scholar
Hahn, Harlan, “Public Policy and Disabled Infants: A Sociopolitical Perspective,” Issues in Law and Medicine, 3, no. 1 (1987): 327.Google Scholar