83 The quotation from Marsha Saxton occurs on pages 110–11 of her essay “Disability rights and selective abortion,” in The Disability Studies Reader, 2nd ed., edited by Lennard Davis (2006).
84 The quotation from Sharon Snyder and David T. Mitchell occurs on page 31 of their book, Cultural Locations of Disability (2006).
85 William Ruddick discusses the “hospitality view” of women in his article “Ways to limit prenatal testing,” in Prenatal Testing and Disability Rights, edited by Adrienne Asch and Erik Parens (2000).
86 The quotation from Laura Hershey comes from her article “Choosing disability,” Ms., July 1994.
87 The quotation from Ruth Hubbard occurs on page 232 of her article “Eugenics: New tools, old ideas,” in Embryos, Ethics, and Women’s Rights: Exploring the New Reproductive Technologies, edited by Elaine Hoffman Baruch, Amadeo F. D’Adamo, and Joni Seager (1988).
88 For criticism of the Human Genome Project, see Mary Jo Iozzio, “Genetic anomaly or genetic diversity: Thinking in the key of disability on the human genome,” Theological Studies 66, no. 4 (December 2005); and James C. Wilson, “(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).
89 Donna Haraway refers to the “act of canonization” on page 215 of her Simians, Cyborgs, and Women: The Reinvention of Nature (1991).
90 Michel Foucault’s reference to “a technology of abnormal individuals” occurs on page 61 of Abnormal: Lectures at the Collège de France, 1974–1975 (2003); his reference to “physical vigor and the moral cleanliness of the social body” occurs on page 54 of The History of Sexuality, vol. 1 (1990); his discussion of error occurs on page 22 of his introduction to Georges Canguilhem, The Normal and the Pathological (1991).
91 All of the quotations in this passage come from Deborah Kent, “Somewhere a mockingbird,” in Prenatal Testing and Disability Rights, edited by Erik Parens and Adrienne Asch (2000), pages 57–63.
92 John Hockenberry’s view of “Jerry’s kids” occurs on page 36 of Moving Violations: War Zones, Wheelchairs and Declarations of Independence (1996).
93 Rod Michalko likens helping to name-calling on page 20 of The Difference That Disability Makes (2002).
94 Arlene Mayerson discusses the danger of “benevolence” to the disabled in Nancy Gibbs, “Pillow angel ethics,” Time, January 7, 2007.
95 Results of the happiness study are reported in David Kahneman et al., “Would you be happier if you were richer? A focusing illusion,” Science 312, no. 5782 (June 30, 2006).
96 The quotation from Steven R. Smith occurs on page 26 of his paper “Social justice and disability: Competing interpretations of the medical and social models,” in Arguing About Disability: Philosophical Perspectives , edited by Kristjana Kristiansen, Simo Vehmas, and Tom Shakespeare (2009).
97 For more information on the “pro-ana” and “pro-mia” movement, see Virginia Heffernan, “Narrow-minded,” New York Times, May 25, 2008.
98 The quotation from Lucy Grealy occurs on of page 157 of her Autobiography of a Face (1994).
99 See Dylan M. Smith et al., “Happily hopeless: Adaptation to a permanent, but not to a temporary, disability,” Health Psychology 28, no. 6 (November 2009).
100 The failure-to-diagnose suit is described in Rebecca Allison, “Does a cleft palate justify an abortion?,” Guardian, December 2, 2003.
101 The quotation from the mother of the child with a cleft palate comes from Barry Nelson, “Born with just a little difference,” Northern Echo, December 2, 2003.
102 The quotation from Bruce Bauer occurs in Eric Zorn, “At 15, Lauren is coming forward for kids like her,” Chicago Tribune, April 24, 2003.
103 Chris Wallace is profiled in Chris Dufresne, “Amazing feat,” Los Angeles Times, October 8, 1997.
104 The word technoluxe was coined by journalist Elizabeth Lamont to describe a certain class of surgical procedures; see her article “The flawless foot,” Vogue, March 2003; and Arthur W. Frank’s commentary, “Emily’s scars: Surgical shapings, technoluxe, and bioethics,” Hastings Center Report 34, no. 2 (March/April 2004). For a recent discussion of cosmetic foot surgery, see Melinda Beck’s article “Toe the line: Doctors fight cosmetic foot surgery,” Wall Street Journal, July 27, 2010.
105 The quotation from Joanne Green comes from her article “The reality of the miracle: What to expect from the first surgery,” Wide Smiles, 1996.
106 The passage by Alice Domurat Dreger occurs on pages 55–57 of One of Us: Conjoined Twins and the Future of Normal (2004). It has been condensed. In full: “But parents may also seek surgical fixes because of the genuine (and typically unaddressed) anguish they are feeling about their own identities. For when a child is born with an unusual anatomy, not only is that child’s identity thrown into question, but so are the identities of his parents. Parents whose child displays an uncertain identity—whose child may not be clearly one or two, or may have an unfamiliar sort of face, or may have genitals that don’t look like the usual male or female—these parents suddenly find themselves unsure about their own social and familial role. How are they supposed to act? What are they supposed to think, feel, do, say? They know only how normal parents are supposed to behave, but they can’t be normal parents if they don’t have a normal child. They seek surgical reconstruction of a normal child in part because they feel like they will know how to be a parent to that child, whereas they often feel uncertain how to be a parent to this one.”
107 The French study finding an inverse relationship between tolerance for disability and socioeconomic status is Annick-Camille Dumaret et al., “Adoption and fostering of babies with Down syndrome: A cohort of 593 cases,” Prenatal Diagnosis 18, no. 5 (May 1998).
108 The American study finding attitudinal differences toward disability among different socioeconomic strata is Elizabeth Lehr Essex et al., “Residential transitions of adults with mental retardation: Predictors of waiting list use and placement,” American Journal of Mental Retardation 101, no. 6 (May 1997).
109 Studies on racial and socioeconomic disparities in rates of out-of-home placement of disabled children include the above-cited studies by Dumaret and Essex; Jan Blacher, “Placement and its consequences for families with children who have mental retardation,” in When There’s No Place Like Home: Options for Children Living Apart from Their Natural Families, edited by Jan Blacher (1994); Frances Kaplan Grossman, Brothers and Sisters of Retarded Children: An Exploratory Study (1972); Robert Hanneman and Jan Blacher, “Predicting placement in families who have children with severe handicaps: A longitudinal analysis,” American Journal on Mental Retardation 102, no. 4 (January 1998); and Tamar Heller and Alan Factor, “Permanency planning for adults with mental retardation living with family caregivers,” American Journal on Mental Retardation 96, no. 2 (September 1991).
110 The quotation from Jim Sinclair (“. . . this is what we hear when you pray for a cure . . .”) occurs in his 1993 essay, “Don’t mourn for us,” at http://www.jimsinclair.org/dontmourn.htm.
111 The quotation from Aimee Mullins occurs in Susannah Frankel, “Body beautiful,” Guardian, August 29, 1998.
112 Bill Shannon is profiled in Bill O’Driscoll, “Turning the tables,” Pittsburgh City Paper, March 29, 2007.
113 See “Oscar Pistorius hopes to have place at London Olympics,” British Broadcasting Corporation, March 17, 2012; “Oscar Pistorius: The ‘Blade Runner’ who is a race away from changing the Olympics,” Associated Press/Washington Post, May 16, 2012; and Tim Rohan, “Pistorius will be on South Africa’s Olympic team,” New York Times, July 4, 2012.
114 See Adam Doerr, “The wrongful life debate,” Genomics Law Report, September 22, 2009.
115 The quotation from the French court decision comes from Wim Weber, “France’s highest court recognizes ‘the right not to be born,’” Lancet 358, no. 9297 (December 8, 2001); the aftermath is described in Lynn Eaton, “France outlaws th
e right to sue for being born,” British Medical Journal 324, no. 7330 (January 19, 2002).
116 See Adam Doerr, “The wrongful life debate,” Genomics Law Report, September 22, 2009; Ronen Perry, “It’s a wonderful life,” Cornell Law Review 93 (2008); and the decision in Turpin v. Sortini, 31 Cal. 3d 220, 643 P.2d 954 (May 3, 1982); that California Supreme Court case pertained to a suit with the deaf child named as plaintiff. The full text of the decision can be found on the Stanford Law School website, http://scocal.stanford.edu/opinion/turpin-v-sortini-30626.
117 Curlender v. BioScience Laboratories, 106 Cal. App. 3d 811, 165 Cal. Rptr. 477 (1980). The decision can be found in its entirety at http://law.justia.com/cases/california/calapp3d/106/811.html.
118 The quotation from the wrongful-life lawsuit brought by the parents of a child with Tay-Sachs occurs in the court decision in Miller v. HCA, Inc., 118 S.W. 3d 758 (Tex. 2003). The decision can be read in its entirety on the website of the Supreme Court of Texas, http://www.supreme.courts.state.tx.us/historical/2003/sep/010079.pdf.
119 The quotation from Nigel Andrews comes from his review “Glowing wonder of an Anatolian epiphany,” Financial Times, March 15, 2012.
120 The quotation about increased growth and maturity in parents of disabled children comes from Richard P. Hastings et al., “Factors related to positive perceptions in mothers of children with intellectual disabilities,” Journal of Applied Research in Intellectual Disabilities 15, no. 3 (September 2002).
121 See Kate Scorgie and Dick Sobsey, “Transformational outcomes associated with parenting children who have disabilities,” Mental Retardation 38, no. 3 (June 2000).
122 The study of mothers who saw advantages in their parenting experience is described on page 138 of Cognitive Coping, Families, and Disability, edited by Ann P. Turnbull, Joan M. Patterson, and Shirley K. Behr (1993), in Glenn Affleck and Howard Tennen’s chapter, “Cognitive adaptation to adversity: Insights from parents of medically fragile infants.”
123 The study comparing developmental outcomes in children of mothers who tried to find meaning in their experience is described on page 135 of Infants in Crisis: How Parents Cope with Newborn Intensive Care and Its Aftermath, edited by Glenn Affleck, Howard Tennen, and Jonelle Rowe (1991).
124 The quotation from Tobin Siebers about inclusion occurs on page 183 of Disability Theory (2008).
125 The quotation from Roy McDonald comes from Danny Hakim, Thomas Kaplan, and Michael Barbaro, “After backing gay marriage, 4 in G.O.P. face voters’ verdict,” New York Times, July 4, 2011; the quotation from Jared Spurbeck comes from his article “NY senator’s grandkids made him realize ‘gay is OK,’” Yahoo! News, June 26, 2011.
126 Personal communication with Doug Wright.
127 See Ann Whitcher-Gentzke, “Dalai Lama brings message of compassion to UB,” UB Reporter, September 21, 2006.
128 This Western naïveté about nirvana was explained to me by Robert Thurman in 2006.
129 Jalāl al-Dn Rm (Maulana), The Essential Rumi (1995), page 142: “Don’t turn away. Keep your gaze on the bandaged place. That’s where the light enters you.”
II: Deaf
130 “I was planning to write on the Deaf”: My article “Defiantly deaf” was published in the New York Times Magazine, August 29, 1994.
131 Interactions between protesters and Lexington Center for the Deaf administrators were described in David Firestone, “Deaf students protest new school head,” New York Times, April 27, 1994.
132 An index of state schools for the deaf in the United States can be found on the Laurent Clerc National Deaf Education Center’s website, http://clerccenter.gallaudet.edu/Clerc_Center/Information_and_Resources/Info_to_Go/Resources/Superintendents_of_Schools_for_the_Deaf_Contact_Information.html.
133 Many have written eloquently and passionately on Deaf history and culture, and the dilemmas facing the Deaf in society. Seminal anthologies and analyses include Humphrey-Dirksen Bauman’s Open Your Eyes: Deaf Studies Talking (2008); Beryl Lieff Benderly’s Dancing Without Music: Deafness in America (1990); Lois Bragg’s Deaf World: A Historical Reader and Primary Sourcebook; Paddy Ladd’s Understanding Deaf Culture: In Search of Deafhood; Kristin Lindgren et al.’s Signs and Voices: Deaf Culture, Identity, Language, and Arts; Carol Padden and Tom Humphries’s Deaf in America: Voices from a Culture and Inside Deaf Culture; and Susan D. Rutherford’s “The culture of American deaf people,” Sign Language Studies 59 (Summer 1998). Journalistic coverage of the subject includes Anita Manning’s “The changing deaf culture,” USA Today, May 2, 2000; and Cathy Young’s “Radicalism in the deaf culture,” Boston Globe, November 6, 2006.
134 Figures on the percentage of deaf children with hearing parents come from Ross E. Mitchell and Michael A. Karchmer, “Chasing the mythical ten percent: Parental hearing status of deaf and hard of hearing students in the United States,” Sign Language Studies 4, no. 2 (Winter 2004).
135 See St. Augustine, Contra Julianum: “We acknowledge, indeed, how much pertains to our own transgressions: from what source of culpability does it come that innocent ones deserve to be born sometimes blind, sometimes deaf, which defect, indeed, hinders faith itself, by the witness of the Apostle, who says, ‘Faith comes by hearing (Rom. X, 17).’” This passage is from Augustini, Sancti Aurelii, Hipponensis Episcopi Traditio Catholica, Saecula IV–V, Opera Omnia, Tomus Decimus, Contra Julianum, Horesis Pelagianea Defensorum, Liber Tertius, Caput IV–10. Excudebatur et venit apud J. P. Migne editorem, 1865, cited in Ruth E. Bender, The Conquest of Deafness: A History of the Long Struggle to Make Possible Normal Living to Those Handicapped by Lack of Normal Hearing (1970), page 27.
It is worth noting, however, that others have interpreted the passage from Romans differently. In Deaf Liberation Theology, Hannah Lewis wrote, “This inability to conceive of a full and legally competent language except in terms of speech and hearing is reflected in the language used in much of the New Testament about the word of God. Romans 10:17 for example says: ‘So faith comes from what is heard and what is heard comes from the word of Christ.’ This verse read literally suggests that the writer did not include d/Deaf people who communicate visually as being able to develop a personal faith in Christ in response to the grace mediated through his word. Augustine is one early theologian who appears to interpret this passage to argue that d/Deaf people cannot become believers. This belief of Augustine, referred to in every major work on Deaf people, has always been seen as either justifying the prioritizing of teaching of speech and lip-reading to Deaf children above all else, or as an insurmountable obstacle for Deaf people in their relationship to Christianity. However, Per Erikson, citing the work of Christer Degsell, an Augustinian scholar, concludes that what Augustine really meant was that d/Deaf people could not acquire faith by listening to spoken sermons the way hearing people did (and which was the major form of knowledge transmission in a world where almost no one could read); they had to find alternative means for accessing and transmitting the Gospel. In another place, he goes on to say, Augustine refers to gestures and signs as verba visibilia or visible words, so presumably he thought deaf people could be saved if the Gospel was transmitted to them through signs.”
Ron Friedrich, in “St. Augustine on deafness,” Mustard Seed, March 2011. at http://www.christdeaf.org/newsletter/2011/march/pastor.htm, writes, “What St. Augustine actually said was that congenital deafness ‘hinders faith.’ Society in his day lacked systematic programs for deaf education and language training, so in that sense, he was right. He has often been misquoted to say that deaf people could not have saving faith, since Romans 10:17 says “Faith comes by hearing . . .” disregarding the rest of that verse which describes “hearing” as a spiritual picture for receiving God’s Word. Receiving God’s Word can come just as well by seeing. St. Augustine did not assign Deaf people automatically to hell.
“St. Augustine’s comment about deafness was a side comment in a refutation against Pelagius who said that people are born morally neutral with th
e capability of self perfection, so that neither God’s grace nor Christ’s sacrifice are necessary for salvation. St. Augustine asserted that all people are born sinful and are in need of Christ’s sacrifice and God’s grace. He said that Adam’s Fall infects all mankind, and among the effects of sin are death and disease. Death and disease don’t happen only because we make wrong moral choices. Augustine reminds us that a person cannot make a wrong moral choice to cause himself to have a birth defect. Rather, we inherit a sinful nature from our parents, and that sin works its effects (disease and death) in us from the moment of conception, which can lead to birth defects, like blindness and deafness, ‘which defect, indeed, hinders faith itself.’”
Samar Sinha, in “God, His agents and Deafness,” Lingua Parasitica, October 11, 2009, http://samarsinha.blogspot.com/2009/10/god-his-agents-and-deafness.html, writes, “If the Old Testament reflects the attitudes prevalent at the time of Moses, then societally, deafness was perceived as a sin, a social menace, and hence, the deaf were cursed, damned and shunted aside. In fact, Isaiah’s prophesies clearly reflect a vision of society where sound and hearing was central and it was free from deafness and deaf people. This is a view shared by the New Testament, which, although it no longer conceives of deafness as a grand design, emphasizes the social inclination towards orality and aurality viz., the healing powers of Jesus. Such ‘miracles’ seek to ‘cure’ deafness and install speech and hearing among the deaf. The extreme view of all, however, is to be found in Paul’s epistle to the Romans (10:17), where in a single sentence, the deaf are denied the possibility of faith: ‘So then faith cometh by hearing, and hearing by the word of God.’
“These attitudes established the centrality of speech and hearing in the Christian world-view in the centuries that followed. Catholic theologists accepted the official doctrine; in the words of Saint Augustine (354–430 A.D.), deafness ‘is a hindrance to faith’ because the deaf cannot hear the word of God. At the same time, a dialogue in Chapter Eighteen of De quantitate animae liber unus reflects Augustine’s optimism about deaf community and sign language, as can be seen in his question: ‘What does it matter, as he grows up, whether he speaks or makes gestures, since both these pertain to the soul?’ Augustine enlisted the deaf to spread his mission and membership, but his view that deaf people could learn through sign (Augustine refers to ‘bodily movements,’ ‘signs,’ and ‘gestures’) and were thus able to receive faith and salvation was ignored, and was not part of the official doctrine and practice of the Catholic Church.”
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