34 See Francis Fukuyama, Our Posthuman Future: Consequences of the Biotechnology Revolution (2002).
35 Freud explores the polarities of emotion within love and hate in The Ego and the Id (1989).
36 See Matt Ridley, Nature via Nurture: Genes, Experience, and What Makes Us Human (2003).
37 The Clarence Darrow quotation comes from his closing argument for the defense in the Leopold-Loeb murder trial, republished in Famous American Jury Speeches (1925). From page 1050: “I know that one of two things happened to Richard Loeb; that this terrible crime was inherent in his organism, and came from some ancestor, or that it came through his education and his training after he was born.”
For modern discussions of biological propensity to criminality, see Sharon S. Ishikawa and Adrian Raine’s chapter, “Behavioral genetics and crime,” in The Neurobiology of Criminal Behavior 4, edited by J. Glicksohn (2002); and Adrian Raine, “Biosocial studies of antisocial and violent behavior in children and adults: A review,” Journal of Abnormal Child Psychology 30, no 4 (August 2002).
38 Statistics on the incidence of disability occur on page 25 of Paul T. Jaeger and Cynthia Ann Bowman, Understanding Disability: Inclusion, Access, Diversity, and Civil Rights (2005).
39 The quotation by Tobin Siebers occurs on page 176 of Disability Theory (2008).
40 The idea that the most effortful years of dealing with a child with special needs are the first decade of his life, when the situation is still novel and confusing; the second decade, because it is adolescence; and the last decade of the parents’ life, when they are old and weak and worry acutely about what will happen to their child after they are gone, is described as the U-shaped stress graph—high at the beginning and at the end. See the discussion by Marsha Mailick Seltzer and her colleagues in their chapter, “Midlife and later life parenting of adult children with mental retardation,” in The Parental Experience in Midlife, edited by Carol Ryff and Marsha Mailick Seltzer (1996), pages 459–532.
41 The quotation from Simon Olshansky (“Most parents who have a mentally defective child . . .”) occurs on page 190 of his paper “Chronic sorrow: A response to having a mentally defective child,” Social Casework 43, no. 4 (1962).
42 Aaron Antonovsky discusses the “sense of coherence” extensively in Health, Stress, and Coping (1980).
43 The quotation from Ann Masten (“. . . the ordinariness of the phenomenon”) occurs on page 227 of her paper “Ordinary magic: Resilience processes in development,” American Psychologist 56, no. 3 (March 2001).
44 Parents reported deterioration of their health due to caregiving demands in Bryony A. Beresford, “Resources and strategies: How parents cope with the care of a disabled child,” Journal of Child Psychology & Psychiatry 35, no. 1 (January 1994).
45 The study finding cellular alteration in longtime caretakers is Elissa Epel et al., “Accelerated telomere shortening in response to life stress,” Proceedings of the National Academy of Sciences 101, no. 49 (December 2004).
46 The statistic that fathers who described a significant caregiving burden died younger than fathers with a lighter caregiving burden appears on page 204 of Cognitive Coping, Families and Disability, edited by Ann P. Turnbull, Joan M. Patterson, and Shirley K. Behr (1993), in Tamar Heller’s chapter “Self-efficacy coping, active involvement, and caregiver well-being throughout the life course among families of persons with mental retardation,” citing B. Farber, L. Rowitz, and I. DeOllos, “Thrivers and nonsurvivors: Elderly parents of retarded offspring” (1987), paper presented at the annual meeting of the American Association on Mental Deficiency, Detroit.
47 The study in which 94 percent of parent-participants reported that they were getting along as well as most other people is Douglas A. Abbott and William H. Meredith, “Strengths of parents with retarded children,” Family Relations 35, no. 3 (July 1986).
48 The quotation about increased marital closeness and empathy occurs in Glenn Affleck and Howard Tennen’s chapter, “Cognitive adaptation to adversity: Insights from parents of medically fragile infants,” in Cognitive Coping, Families, and Disability, edited by Ann P. Turnbull, Joan M. Patterson, and Shirley K. Behr (1993), page 138.
49 The study in which participants overwhelmingly reported positive parenting experiences is Allen G. Sandler and Lisa A. Mistretta, “Positive adaptation in parents of adults with disabilities,” Education & Training in Mental Retardation & Developmental Disabilities 33, no. 2 (June 1998).
50 Glenn Affleck and Howard Tennen compare optimistic and pessimistic parents in the chapter “Cognitive adaptation to adversity: Insights from parents of medically fragile infants,” in Cognitive Coping, Families, and Disability, edited by Ann P. Turnbull, Joan M. Patterson, and Shirley K. Behr (1993), page 139.
51 See Miguel de Unamono, The Tragic Sense of Life in Men and Nations (1977), page 5: “It is not usually our ideas that make us optimists or pessimists, but our optimism or pessimism—of perhaps physiological or pathological origin, the one as well as the other—that makes our ideas.”
52 The comparative happiness study is P. Brickman, D. Coates, and R. Janoff-Bulman, “Lottery winners and accident victims: Is happiness relative?,” Journal of Personal & Social Psychology 36, no. 8 (August 1978); the subject is the central theme of Daniel Gilbert, Stumbling on Happiness (2006).
53 See Martha Nibley Beck, Expecting Adam: A True Story of Birth, Rebirth and Everyday Magic (1999).
54 The quotation from Clara Claiborne Park (“. . . it is still love”) occurs on page 267 of The Siege (1967).
55 The quotation from the unnamed mother (“This thought runs like a bright golden thread . . .”) comes from page 56 of Mrs. Max A. Murray’s 1959 article, “Needs of parents of mentally retarded children,” reprinted in Families and Mental Retardation, edited by Jan Blacher and Bruce L. Baker (2002).
56 Marty Wyngaarden Krauss and Marsha Mailick Seltzer catalog pitfalls and resources for parents of disabled children in “Coping strategies among older mothers of adults with retardation: A life-span developmental perspective,” in Cognitive Coping, Families, and Disability, edited by Ann P. Turnbull, Joan M. Patterson, and Shirley K. Behr (1993), page 177.
57 See, for example, Kate Scorgie and Dick Sobsey, “Transformational outcomes associated with parenting children who have disabilities,” Mental Retardation 38, no. 3 (June 2000).
58 See, for example, Robert M. Hodapp and Diane V. Krasner, “Families of children with disabilities: Findings from a national sample of eighth-grade students,” Exceptionality 5, no. 2 (1995); Rosalyn Roesel and G. Frank Lawlis, “Divorce in families of genetically handicapped/mentally retarded individuals,” American Journal of Family Therapy 11, no. 1 (Spring 1983); Lawrence J. Shufeit and Stanley R. Wurster, “Frequency of divorce among parents of handicapped children,” ERIC Document Reproduction Service no. ED 113 909 (1975); and Don Risdal and George H. S. Singer, “Marital adjustment in parents of children with disabilities: A historical review and meta-analysis,” Research & Practice for Persons with Severe Disabilities 29, no. 2 (Summer 2004). Risdal and Singer’s meta-study found that “there is a detectable overall negative impact on marital adjustment, but this impact is small and much lower than would be expected given earlier assumptions about the supposed inevitability of damaging impacts of children with disabilities on family well-being. For this study a positive effect size indicates that the existence of a disability in the family is positively correlated with an increased level of marital strain. The effect size obtained in the current study is relatively small. This finding does not support an older view that children with disability cause severe family strain in almost all families. However, small effect sizes can still indicate the existence of important problems. When viewed in terms of the percentage of marriages that end in divorce in the two groups, there is an average increase of 5.97%o (range 2.9–6.7%) among families of children with disabilities. The studies that provide the best evidence based upon large sample sizes and the use of unselected population sa
mples are the studies conducted by Hodapp and Krasner (1995), with a percentage increase in divorce of 5.35%, and by Witt et al. (2003), with an increase of 2.9%. The former study focused on families of children with developmental disabilities and the latter on families of children with a wider range of disabilities. including chronic illness. While these increases are much smaller than previously assumed, they do indicate the existence of marital difficulties and the need for better forms of family support for some families of children with disabilities.”
59 Dubious professionals abound in Jeanne Ann Summers, Shirley K. Behr, and Ann P. Turnbull, “Positive adaptation and coping strengths of families who have children with disabilities,” in Support for Caregiving Families: Enabling Positive Adaptation to Disability, edited by George H. S. Singer and Larry K. Irvin (1989), page 29.
60 The quotation from the mother exasperated by her encounters with dubious professionals occurs in Janet Vohs, “On belonging: A place to stand, a gift to give,” in Cognitive Coping, Families, and Disability, edited by Ann P. Turnbull, Joan M. Patterson, and Shirley K. Behr (1993).
61 For an in-depth exploration of institutionalization in the United States and campaigns to marshal support for families’ efforts to care for their disabled children at home, see Joseph P. Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (1993).
62 Geraldo Rivera’s 1972 investigation of conditions at the Willowbrook State School in Staten Island is included in the DVD video documentary Unforgotten: Twenty-Five Years After Willowbrook (2008).
63 The quoted description of conditions at Willowbrook comes from John J. O’Connor, “TV: Willowbrook State School, ‘the Big Town’s leper colony,’” New York Times, February 2, 1972.
64 The phrase “mental bed-sores” appears in Sinclair Lewis’s 1917 novel, The Job, describing a state of resigned malaise similar to that experienced by long-term institutionalized patients: “While Mr. Schwirtz stayed home and slept and got mental bed-sores and drank himself to death—rather too slowly—on another fifty dollars which he had borrowed after a Verdun campaign, Una was joyous to be out early, looking over advertisements, visiting typewriter companies’ employment agencies.”
Four decades later, in what was likely an instance of great minds thinking alike, Russell Barton used the same term. From page 7 of Institutional Neurosis (1959): “Institutional Neurosis is like a bed-sore. It results from factors other than the illness bringing the patient into hospital. It is, so to speak, a mental bed-sore.” Barton attributed the condition to “the Seven Deadly Sins of Institutions: loss of contact with the outside world, enforced idleness, bossiness of medical and nursing staff, loss of friends and personal possessions, excessive use of drugs, poor ward atmosphere, and loss of prospects outside the institution”; see his paper “The institutional mind and the subnormal mind,” Journal of Mental Subnormality 7 (1961). For a restatement of Barton’s thesis (sans the “mental bed-sores” expression), see Gary L. Wirt’s paper “Institutionalism revisited: Prevalence of the institutionalized person,” Psychiatric Rehabilitation Journal 22, no. 3 (Winter 1999).
65 The observation about the “highly restrictive manner” in which many families find themselves living is made by Jan Blacher in “Sequential stages of parental adjustment to the birth of a child with handicaps: Fact or artifact?,” Mental Retardation 22, no. 2 (April 1984).
66 The care of disabled people in preindustrial society is discussed on pages 2-3 of Lennard Davis, Enforcing Normalcy: Disability, Deafness, and the Body (1995).
67 Adolf Hitler is quoted on page 33 of Exploring Disability: A Sociological Introduction, edited by Colin Barnes, Geof Mercer, and Tom Shakespeare (1999), citing to M. Burleigh, Death and Deliverance: Euthanasia in Germany, 1900–1945 (1994).
68 For a discussion of compulsory sterilization in Europe and the United States, see pages 34-35 of Richard Lynn, Eugenics: A Reassessment (2001).
69 The “Ugly Law” was Section 36034 of the Chicago Municipal Code (repealed 1974). It is discussed at length in Adrienne Phelps Coco, “Diseased, maimed, mutilated: Categorizations of disability and an ugly law in late nineteenth-century Chicago,” Journal of Social History 44, no. 1 (Fall 2010). The full text of the law: “Any person who is diseased, maimed, mutilated or in any way deformed so as to be an unsightly or disgusting object, or an improper person to be allowed in or on the streets, highways, thoroughfares or public places in this city shall not therein or thereon expose himself or herself to public view under penalty of one dollar for each offense. On the conviction of any person for a violation of this section, if it shall seem proper and just, the fine provided for may be suspended, and such person detained at the police station, where he shall be well cared for, until he can be committed to the county poor house.”
70 The Jim Crow comparison is expounded by Justice Thurgood Marshall in the 1985 Supreme Court decision City of Cleburne, Texas v. Cleburne Living Center, Inc., in which he states of the mentally ill, “A regime of state-mandated segregation and degradation soon emerged that, in its virulence and bigotry, rivaled, and indeed paralleled, the worst excesses of Jim Crow.” The decision can be found in its entirety at http://www.law.cornell.edu/supct/html/historics/USSC_CR_0473_0432_ZX.html. Marshall writes, “The mentally retarded have been subject to a ‘lengthy and tragic history,’ University of California Regents v. Bakke, 438 U.S. 265, 303 (1978) (opinion of POWELL, J.), of segregation and discrimination that can only be called grotesque. During much of the 19th century, mental retardation was viewed as neither curable nor dangerous, and the retarded were largely left to their own devices. By the latter part of the century and during the first decades of the new one, however, social views of the retarded underwent a radical transformation. Fueled by the rising tide of Social Darwinism, the ‘science’ of eugenics, and the extreme xenophobia of those years, leading medical authorities and others began to portray the ‘feeble-minded’ as a ‘menace to society and civilization . . . responsible in a large degree for many, if not all, of our social problems.’ A regime of state-mandated segregation and degradation soon emerged that, in its virulence and bigotry, rivaled, and indeed paralleled, the worst excesses of Jim Crow. Massive custodial institutions were built to warehouse the retarded for life; the aim was to halt reproduction of the retarded and ‘nearly extinguish their race.’ Retarded children were categorically excluded from public schools, based on the false stereotype that all were ineducable and on the purported need to protect nonretarded children from them. State laws deemed the retarded ‘unfit for citizenship.’”
71 The quotation from Sharon Snyder and David T. Mitchell occurs on page 72 of Cultural Locations of Disability (2006).
72 Figures on educational attainment of disabled children and economic status of disabled adults rely on the discussion on pages 45–49 of Colin Barnes and Geof Mercer, Disability (2003).
73 The Royal College of Obstetricians and Gynaecology’s proposal to establish guidelines for euthanasia of severely ill preemies is discussed in Peter Zimonjic, “Church supports baby euthanasia,” Times, November 12, 2006.
74 The full text of the US Rehabilitation Act of 1973 (29 USC § 701) can be found online at http://www.law.cornell.edu/uscode/text/29/701, and the Americans with Disabilities Act (42 USC § 12101) at http://www.law.cornell.edu/usc-cgi/get_external.cgi?type=pubL&target=101-336.
75 Vice President Biden’s speech is described in “Biden praises Special Olympic athletes,” Spokesman-Review, February 19, 2009.
76 For a scholarly discussion of disability law’s shrinking protections, see Samuel R. Bagenstos, “The future of disability law,” Yale Law Journal 114, no. 1 (October 2004). Note also, for example, the US Supreme Court decision in the case Toyota Motor Manufacturing v. Williams, 534 U.S. 184 (2002) (full text at http://www.law.cornell.edu/supct/html/00-1089.ZO.html), which mandated a narrow interpretation of what constitutes “substantial limitation” of “major life activities.”
77 Erving Goffman, Stigma: Notes
on the Management of Spoiled Identity (1963; repr. 1986).
78 The quotation from Susan Burch occurs on page 7 of Signs of Resistance: American Deaf Cultural History, 1900 to World War II (2004).
79 Michael Oliver’s statement “Disability has nothing to do with the body, it is a consequence of social oppression” occurs on page 35 of Understanding Disability: From Theory to Practice (1996).
80 Figures on changes in life expectancy over time can be found in Laura B. Shrestha, “Life Expectancy in the United States,” Congressional Research Service, 2006.
81 The quotation from Ruth Hubbard about abortion for Huntington’s disease occurs on page 93 of her essay “Abortion and disability,” in The Disability Studies Reader, 2nd ed., edited by Lennard Davis (2006).
82 Philip Kitcher is quoted on page 71 of James C. Wilson’s essay “(Re)writing the genetic body-text: Disability, textuality, and the Human Genome Project,” in The Disability Studies Reader, 2nd ed., edited by Lennard Davis (2006).
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