American Coalition <strong>of</strong> Citizens with Disabilities,told the Commission in 1980:Within the Colonies, and later the States, communitymores recognized indolence as a prime evil. Becausepopular perceptions equated disability with inability,existence <strong>of</strong> a disability appeared reason enough to deny aperson the right to participate in societal life. 35In the late 19th and early 20th centuries, acceptance<strong>of</strong> the purported science <strong>of</strong> eugenics resultedin the view that people with disabilities were aburden to be regarded as a menace. The AmericanCoalition <strong>of</strong> Citizens with Disabilities has summarizedthis history in a brief submitted to the UnitedStates Supreme Court: 36Th[e] stark history is. . .<strong>of</strong> the regime <strong>of</strong> segregationand degradation which by force <strong>of</strong> state statute deemedretarded people to be "unfit for citizenship." 37 In everystate in inexorable fashion handicapped persons werelegislatively declared a "menace to the happiness. . .<strong>of</strong> thecommunity," 38 "unfitted for companionship with otherchildren," 39 a "blight on mankind" 40 whose very"presence" 41 in the community was "detrimental tonormal" people. 42Official policy was to "purge society" 43 <strong>of</strong> these "antisocialbeings," 44 to "segregate [them] from the world," 45so that they "not. . .be returned to society" 46 since a"defect. . .wounds our citizenry a thousand times morethan any plague." 47 Disabled persons simply did not havessF. Bowe, An Overview Paper on Civil Rights Issues <strong>of</strong>Handicapped Americans: Public Policy Implications, in U.S. Commissionon Civil Rights, Civil Rights Issues <strong>of</strong> HandicappedAmericans: Public Policy Implications 7, 9 (1980).38Amicus Curiae brief for the American Coalition <strong>of</strong> Citizenswith Disabilities, Bowen v. Am. Hosp. Ass'n, 476 U.S. 610 (1986).The text <strong>of</strong> footnotes 37 through 58 are reprinted as theyappeared in the brief.371920 Miss. <strong>Law</strong>s 294, ch. 210, §17.381919 Ala. Acts 739, No. 568, §7.391909 Wash. <strong>Law</strong>s 260, tit. I, subch. 6, §2.40Report <strong>of</strong> the Vermont <strong>School</strong> for the Feeble-Minded 17-18(1916).41Report <strong>of</strong> the Rhode Island <strong>School</strong> for the Feeble-Minded 21(1910).42California Board <strong>of</strong> Charities and Corrections, First BiennialReport 41 (1905).43Wisconsin Board <strong>of</strong> Control, Biennial Report 321 (1898).44Report <strong>of</strong> the Commission on Segregation, Care and Treatment<strong>of</strong> Feeble-Minded and Epileptic Persons in Pennsylvania 43Minded Youth 14 (1914).46First Biennial Report <strong>of</strong> the Board <strong>of</strong> Commissioners <strong>of</strong>Nebraska Institutions 10 (1915).47Fourth Biennial Report <strong>of</strong> the Board <strong>of</strong> Trustees <strong>of</strong> the UtahState Training <strong>School</strong> 3 (1938).48Fourth Biennial Report <strong>of</strong> the South Dakota Commission forSegregation and Control <strong>of</strong> the Feeble-Minded 3 (1932).(1913).45Thirty-Sixth Annual Report <strong>of</strong> the Indiana <strong>School</strong> for Feeble-the "rights and liberties <strong>of</strong> normal people." 48 The District<strong>of</strong> Columbia Board <strong>of</strong> Charity urged Congress, and itagreed, to authorize putting handicapped people awaysince they were "not much above the animal." 49 Handicappedpeople were "not far removed from the brute," 50not quite persons, but "by-products <strong>of</strong> unfinished humanity"51 who were to be segregated for the benefit "<strong>of</strong>society," 52 "to relieve society <strong>of</strong> the 'heavy economic andmoral losses arising from the existence at large <strong>of</strong> theseunfortunate persons.' " 53 It was important to find a "way<strong>of</strong> getting rid <strong>of</strong> these kinds <strong>of</strong> cases." 54 Governmentreports labeled handicapped people "a parasitic predatoryclass," 55 a "danger to the race," 56 "a blight and amisfortune both to themselves and to the public" 57 whoserole "in discounting social progress is by far the mostpotent influence for evil under which society is strugglingtoday." 58As Justice Thurgood Marshall noted:Fueled by the rising tide <strong>of</strong> Social Darwinism, the"science" <strong>of</strong> eugenics, and the extreme xenophobia <strong>of</strong>those years, leading medical authorities and others beganto portray the "feebleminded" as a "menace to society andcivilization. . .responsible in large degree for many, if notall, <strong>of</strong> our social problems." 59Attitudes toward individuals with a disabilitywere harsh. One article in the Massachusetts MedicalSociety magazine in 1912 stated that "[t]he socialand economic burdens <strong>of</strong> uncomplicated feeble-mindednessare only too well known. The feeble-mindedare a parasitic, predatory class, never capable <strong>of</strong> self49District <strong>of</strong> Columbia Appropriations Bills: Hearings Before theComm. on Appropriations, 67th Cong., 2d Sess. 96 (Jan. 13, 15,1932).50Mental Defectives in Virginia: Special Report <strong>of</strong> the Board <strong>of</strong>Charities and Corrections to the General Assembly <strong>of</strong> 2926, at 20.51Baldwin, The Causes, Prevention and Care <strong>of</strong> Feeble-MindedChildren, in Proceedings <strong>of</strong> the Texas Conference <strong>of</strong> Charities andCorrections at Its Second Annual Meeting 87 (1912).s2See, e.g., 1919 Ga. <strong>Law</strong>s 379, No. 373, §3.531915 Tex. Gen. <strong>Law</strong>s 143, ch. 90, §§1,2.54Connecticut <strong>School</strong> for Imbeciles: Hearings on H.B. No. 644Before the Joint Standing Committee on Humane Institutions 20(typed transcript, Feb. 25, 1915) (statement <strong>of</strong> Mr. Kerner <strong>of</strong>Waterbury).55Report <strong>of</strong> the Vermont <strong>School</strong> for Feeble-Minded Children17-18 (1916).56Report <strong>of</strong> the Legislative Visiting Committee, Wise. Sen. J. 263(48th Leg. Sess.).57Thirteenth Biennial Report <strong>of</strong> the Kansas <strong>School</strong> for Feeble-Minded Youth 12 (1906).58Mental Defectives in Indiana: Third Report <strong>of</strong> the Committeeon Mental Defectives 6 (1922).59City <strong>of</strong> Cleburne v. Cleburne Living Center, 473 U.S. 432,461-62 (1985) (Marshall, J., concurring) (quoting H. Goddard,The Possibilities <strong>of</strong> Research as Applied to the Prevention <strong>of</strong>Feeblemindedness, in Proceedings <strong>of</strong> the National Conference <strong>of</strong>Charities and Correction 307 (1915)).24
support or <strong>of</strong> managing their own affairs." 60 AChicago ordinance provided that no person "who isdiseased, maimed, mutilated or in any way deformedso as to be an unsightly or disgusting object orimproper person" could be found "in or on thepublic ways or other public places," and that nosuch person could "expose himself to public view." 61In Heredity and Human Progress, a physicianadvocated that children with severe disabilities,including "idiots," most "imbeciles," and "epileptics"should be eliminated for the safety <strong>of</strong> theNation through the use <strong>of</strong> a painless gas. 62In 1941 a physician addressing a luncheon duringthe annual meeting <strong>of</strong> the American PsychiatricAssociation said: "[W]e have too many feeblemindedpeople among us. . . .The idiot and the imbecileseem to me unresponsive to the care put upon them.They are not capable <strong>of</strong> being educated; nor cansuch defective products ever be made to be so." 63He spoke "in favor <strong>of</strong> euthanasia for those hopelessones who should never have been born—Nature'smistakes," urging that when a "competent medicalboard. . .acting. . .on the application <strong>of</strong> the guardians<strong>of</strong> the child, and after three examinations <strong>of</strong> adefective who has reached the age <strong>of</strong> five or more,should decide that that defective has no future norhope <strong>of</strong> one. . .it is a merciful and kindly thing torelieve that defective—<strong>of</strong>ten tortured and convulsed,grotesque and absurd, useless and foolish,and entirely undesirable—<strong>of</strong> the agony <strong>of</strong> living." 64An editorial in the issue <strong>of</strong> the American Journal <strong>of</strong>Psychiatry that published the physician's addresssuggested that the attitude <strong>of</strong> parents who opposedelimination <strong>of</strong> their "idiot" children was a fit subjectfor psychiatric analysis and correction:It is difficult to conceive how normal affection can be feltfor a creature incapable <strong>of</strong> the slightest response; andexaggerated sentimentality or forced devotion which canserve no possible purpose can hardly be looked upon asdesirable. . . .[T]he psychiatric problem. . .[<strong>of</strong>] the "fondness" <strong>of</strong> theparents <strong>of</strong> an idiot and their "want" that he should be kept60A.M. Clark and A.D.B. Clarke, eds., Mental Deficiency: TheChanging Outlook, 16-17, quoted in Evans, The Lives <strong>of</strong>Mentally Retarded People 43 (1983).« Formerly Chicago, 111., Mun. Cod. §36-34 (1966).« D. McKim, Heredity and Human Progress 189, 193 (1900).83Kennedy, The Problem <strong>of</strong> Social Control <strong>of</strong> the CongenitalDefective, 49 Am. J. Psychiatry 13, 13 (1942).alive. . .we believe deserves study—the extent to which itexists, in fact and not merely as a generalization <strong>of</strong> opinion,what underlying factors. . .are discoverable, whether itcan be assessed as healthy or morbid, and whether in thelatter case it is modifiable by exposure to mental hygieneprinciples. 65Although contemporary justifications for denial<strong>of</strong> treatment to children with disabilities are typicallyless harshly worded, a clear continuity <strong>of</strong> thoughtcan <strong>of</strong>ten be found. Contemporary bioethicist PeterSinger writes:When the death <strong>of</strong> a defective infant will lead to the birth<strong>of</strong> another infant with better prospects <strong>of</strong> a happy life, thetotal amount <strong>of</strong> happiness will be greater if the defectiveinfant is killed. The loss <strong>of</strong> happy life for the first infant isoutweighed by the gain <strong>of</strong> a happier life for the second. 86A noted authority on child abuse and neglect arguesthat the state should intervene to save the life <strong>of</strong> achild only when the child would have a "life worthliving or a life <strong>of</strong> relatively normal healthygrowth." 67The complex and difficult questions surroundingtreatment decisionmaking for children with disabilitiesmust be approached with sensitivity to theeffects <strong>of</strong> this background <strong>of</strong> dehumanizing attitudesconcerning people with disabilities. Dehumanizingstereotypes are common to virtually every form <strong>of</strong>discrimination, including that based on disability. 68This report thus begins with an examination <strong>of</strong> thecontext <strong>of</strong> such decisionmaking in a chapter thatexplores the parent-physician relationship and thesort <strong>of</strong> information about disability sometimes providedparents by physicians. The next chaptersconsider what the evidence suggests about thepotential quality <strong>of</strong> life <strong>of</strong> people with disabilities incontrast to what are <strong>of</strong>ten inaccurate assumptionsabout their quality <strong>of</strong> life. The report then describesin detail the history and current status <strong>of</strong> legalstandards governing medical treatment for thosewith disabilities. The degree to which these standardsare being implemented and the performance <strong>of</strong>governmental and nongovernmental institutions inenforcing them are assessed. The report ends withfindings <strong>of</strong> fact and recommendations for the future.84Id. at 14.85Euthanasia, 99 Am. J. Psychiatry 141, 143 (1942).86Peter Singer, Practical Ethics 134 (1979).67J. Goldstein, Medical Care for the Child at Risk: On StateSupervention <strong>of</strong> Parental Autonomy, 86 Yale L.J. 645, 651 (1977).68See generally U.S. Commission on Civil Rights, Accommodatingthe Spectrum <strong>of</strong> Individual Abilities 22 (1983).25
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any further implementation of the F
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handicapped infants might violate S
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the provision does cover discrimina
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of the infants. The review mechanis
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Under the law, the Department of He
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that "the phrase 'or holds the reas
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allows an infant to be denied nutri
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avoid the explicit standards set fo
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(as opposed to the far) future, the
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It was recognized, therefore, that
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als with the particular disability
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cared for. They are thus different,
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medical advice. Given the magnitude
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tions at all regarding the subject
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strates that there is a grave dange
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Disincentives to Whistle BlowingDen
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Using a cumulative scaling procedur
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Of that 300 we targeted, approximat
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Conclusionphysicians set forth in t
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taking place when a report of suspe
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where the parents say "the child fe
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Nevertheless, the organization oppo
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Chapter 11The Role and Performance
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a member of the American Academy of
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possibilities that "will be most li
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clearly indicate that the committee
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Reviewing the first 30 months of th
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Webster's defines "suspected" as "t
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Chapter 12The Performance of the Fe
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The baby's doctor, E. Laurence Hode
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to achieve a reasonable life". . .w
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an unmarried mother receiving welfa
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can be sure all appropriate actions
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inquiries to determine whether they
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Chapter 13The Protection and Advoca
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authority to conduct retrospective
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facility that uses such a committee
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Chapter 14Findings and Recommendati
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as the coordination and development
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in the advisory process who is conc
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A Dissenting View on the Report Med
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arts) to depend upon knowledge of h
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Attachments to Statement of William
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medical facility. Considerations su
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Fund for the Improvement of Postsec
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eports such as Kopelman et al. demo
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Appendix 1EXPOSING OUR CHILDREN, EX
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abilities or functions, they are de
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My principal reason for objecting t
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I derive this hint from the many co
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moral distinction. A girl is a huma
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Appendix 2SURVEY OFSTATE BABY DOE P
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insure the immediate referral of po
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Hospital Liaisons Designated in Mos
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BABY DOE COMPARED WITH REGULAR CPS
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We also asked state CPS offices wha
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Limited information was available o
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one-quarter felt that baby doe case
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Appendix 3INFANT CARE REVIEW COMMIT
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and guidelines concerning the withh
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treated to assure the prompt ^repor
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3. Educating Staff and FamiliesThre
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One of the 10 ethics committees vis
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asphyxiation during the birth proce
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Prospective Review -- Each committe
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OBSERVATIONSThe inspection found th
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May 1, 1989Page 2The Commission adv
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Doe 1 admitted on the record of the
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tion is the basis for failure to tr
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her (much appreciated) vote for thi