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

Louis Harris and Associates, ICD Survey of Disabled Americans (New York: International Center for the Disabled, 1986), pp. 112, 114.

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.

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Our Institutional Models (Syracuse: Human Policy Press, 1975); and Chicago, Illinois, Municipal Code, 1896, §§ 36–34 (repealed 1974), quoted in Marcia Pearce Burgdorf and Burgdorf Robert Jr.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.

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): 293–318; and Stone Deborah , The Disabled State (Philadelphia: Temple University Press, 1986).

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).

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).

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).

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).

See “Summary and Analysis,” Mental Disability Law Reporter, 5 (1981): 75–78, 302–04.

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).

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).

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).

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).

Keating Robert , “The War Against the Mentally Retarded,” New York, Sept. 17, 1979, at 87.

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).

Hershey Laura , “Once Again, a Politician Calls our Basic Needs Too Costly, and Unimportant,” Denver Post, May 28, 1992, at 7B.

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.

Sally Jessie Raphael, KCAL (Los Angeles), June 14, 1990.

Longmore Paul K. , “The Strange Death of David Rivlin,” Western Journal of Medicine, 154 (1991): 615–16.

Polio Survivors Newsletter (Dec. 1992–Jan. 1993), p. 1.

Longmore , supra note 19, p. 616.

Johnson Mary , “Killing Babies: Left and Right,” Disability Rag, 6 (1985): 22–23; 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.

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.

See Fletcher , “Attitudes Towards Defective Newborns,” unpublished manuscript, pp. 25–27.

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. 8–9.

Id., p. 9.

Id., p. 10.

Kuhse Singer , supra note 15, pp. 35–36.

Cook , supra note 22, p. 19.

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.

See “Panel on Assisted Suicide Split as Rest of Society,” San Francisco Examiner, Mar. 6, 1994, at A6.

Hahn Harlan , “Public Policy and Disabled Infants: A Sociopolitical Perspective,” Issues in Law and Medicine, 3, no. 1 (1987): 3–27.