545 For statistics on DS population trends, I have relied on a report by the US Centers for Disease Control, “Down syndrome cases at birth increased” (2009); Joan K. Morris and Eva Alberman, “Trends in Down’s syndrome live births and antenatal diagnoses in England and Wales from 1989 to 2008: Analysis of data from the National Down Syndrome Cytogenetic Register,” British Medical Journal 339 (2009); and Guido Cocchi et al., “International trends of Down syndrome, 1993–2004: Births in relation to maternal age and terminations of pregnancies,” Birth Defects Research Part A: Clinical and Molecular Teratology 88, no. 6 (June 2010).
Articles protesting the increase of targeted abortions for DS include Lillibeth Navarro’s “People don’t want a child like me,” Los Angeles Times, September 4, 1991; Timothy Shriver, “Silent eugenics: Abortion and Down syndrome,” Commonweal 134, no. 19 (November 9, 2007); George Will, “Golly, what did Jon do?,” Newsweek, January 29, 2007; and Mary Carmichael, “New era, new worry: New tests for Down syndrome could lead to more abortions and less support for families,” Newsweek, December 15, 2008.
546 Figures on the percentage of children with Down syndrome born to women under thirty-five come from the National Down Syndrome Society. For more on the factors at play in decision-making following prenatal testing, see Miriam Kupperman et al., “Beyond race or ethnicity and socioeconomic status: Predictors of prenatal testing for Down syndrome,” Obstetrics & Gynecology 107, no. 5 (May 2006).
547 Socioeconomic differences in attitudes toward parenting Down syndrome children are explored in 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).
548 Predictions that the population of people with DS might double by 2025 come from Jean A. Rondal, “Intersyndrome and intrasyndrome language differences,” in Jean A. Rondal et al., Intellectual Disabilities: Genetics, Behaviour and Inclusion (2004).
549 The American College of Obstetricians and Gynecologists recommended universal nuchal translucency screening in “Screening for fetal chromosomal abnormalities,” ACOG Practice Bulletin 77 (January 2007). Press reports on the recommendations include Roni Rabin, “Screen all pregnancies for Down syndrome, doctors say,” New York Times, January 9, 2007; and Amy Harmon, “The DNA age: Prenatal test puts Down syndrome in hard focus,” New York Times, May 9, 2007.
550 George Will used the phrase search and destroy in his article “Golly, what did Jon do?,” Newsweek, January 29, 2007.
551 For a study of the impact of parent-to-parent contact on pregnant women’s decisions on abortion after prenatal diagnosis of Down syndrome, see Karen L. Lawson and Sheena A. Walls-Ingram, “Selective abortion for Down syndrome: The relation between the quality of intergroup contact, parenting expectations, and willingness to terminate,” Journal of Applied Social Psychology 40, no. 3 (March 2010). Advocacy for parent education is discussed in Adrienne Asch, “Prenatal diagnosis and selective abortion: A challenge to practice and policy,” American Journal of Public Health 89, no. 11 (November 1999); Adrienne Asch and Erik Parens, “The disability rights critique of prenatal genetic testing: Reflections and recommendations,” in Prenatal Testing and Disability Rights, edited by Erik Parens and Adrienne Asch (2000); Lynn Gillam, “Prenatal diagnosis and discrimination against the disabled,” Journal of Medical Ethics 25, no. 2 (April 1999); and Rob Stein, “New safety, new concerns in tests for Down syndrome,” Washington Post, February 24, 2009.
552 Stephen Quake is quoted in Dan Hurley, “A drug for Down syndrome,” New York Times, July 29, 2011. Quake’s work is also discussed in Jocelyn Kaiser, “Blood test for mom picks up Down syndrome in fetus,” ScienceNOW Daily News, October 6, 2008; Andrew Pollack, “Blood tests ease search for Down syndrome,” New York Times, October 6, 2008; and Amy Dockser Marcus, “New prenatal tests offer safer, early screenings,” Wall Street Journal, June 28, 2011.
553 Babak Khoshnood et al. anticipate an increase in economic stratification of families with Down syndrome children in “Advances in medical technology and creation of disparities: The case of Down syndrome,” American Journal of Public Health 96, no. 12 (December 2006).
554 Michael Bérubé discusses the long-term ramifications of reductions in support for families with DS children in Amy Harmon, “The problem with an almost-perfect genetic world,” New York Times, November 20, 2005.
555 The study finding that women who after testing knowingly choose to give birth to a child with Down syndrome are more harshly judged than those who had no opportunity for testing is Karen L. Lawson, “Perceptions of deservedness of social aid as a function of prenatal diagnostic testing,” Journal of Applied Social Psychology 33, no. 1 (2003). The quotation appears on page 76.
556 The first quotation from Michael Bérubé (“So much depends . . .”) occurs on page 78 of Life as We Know It (1996); the second comes from Amy Harmon, “The problem with an almost-perfect genetic world,” New York Times, November 20, 2005.
557 Pharmaceutical advances in the treatment of Down syndrome are discussed in Dan Hurley, “A drug for Down syndrome,” New York Times, July 29, 2011.
558 The study finding improvement in hippocampal development in mice administered Prozac is Sarah Clark et al., “Fluoxetine rescues deficient neurogenesis in hippocampus of the Ts65Dn mouse model for Down syndrome,” Experimental Neurology 200, no. 1 (July 2006); for the memantine study, see Albert C. S. Costa et al., “Acute injections of the NMDA receptor antagonist memantine rescue performance deficits of the Ts65Dn mouse model of Down syndrome on a fear conditioning test,” Neuropsychopharmacology 33, no. 7 (June 2008).
559 The study finding improvement in mice following elevation of norepinephrine levels is Ahmad Salehi et al., “Restoration of norepinephrine-modulated contextual memory in a mouse model of Down syndrome,” Science Translational Medicine 1, no. 7 (November 2009).
560 See William J. Netzer et al., “Lowering β-amyloid levels rescues learning and memory in a Down syndrome mouse model,” PLoS ONE 5, no. 6 (2010).
561 Quotations by William Mobley, Craig C. Garner, and Albert Costa come from Dan Hurley, “A drug for Down syndrome,” New York Times, July 29, 2011.
562 This passage is based on my interview with Angelica Roman-Jiminez in 2007.
563 The quotation from Martha Nibley Beck (“If you’ll cast your mind back to high school biology . . .”) occurs on pages 327–28 of Expecting Adam (1999).
564 The quotation about babyfaceness comes from the study of the pitch of parents’ voices comes from Deborah J. Fidler, “Parental vocalizations and perceived immaturity in Down syndrome,” American Journal on Mental Retardation 108, no. 6 (November 2003).
565 Fathers’ adaptation to Down syndrome is discussed in W. Steven Barnett and Glenna C. Boyce, “Effects of children with Down syndrome on parents’ activities,” American Journal on Mental Retardation 100, no. 2 (September 1995); L. A. Ricci and Robert M. Hodapp, “Fathers of children with Down’s syndrome versus other types of intellectual disability: Perceptions, stress and involvement,” Journal of Intellectual Disability Research 47, nos. 4–5 (May–June 2003); and Jennifer C. Willoughby and Laraine Masters Glidden, “Fathers helping out: Shared child care and marital satisfaction of parents of children with disabilities,” American Journal on Mental Retardation 99, no. 4 (January 1995).
566 There are a great many studies of the experiences of siblings of disabled children. Researchers focusing on the subject include Brian G. Skotko, Jan Blacher, and Zolinda Stoneman.
Blacher, Jan, ed. Severely Handicapped Young Children and Their Families: Research in Review. Orlando, FL: Academic Press, 1984.
Burton, Sally L., and A. Lee Parks. “Self-esteem, locus of control, and career aspirations of college-age siblings of individuals with disabilities.”Social Work Research 18, no. 3 (September 1994): 178–85.
Cuskelly, Monica, and Pat Gunn. Maternal reports of behavior of siblings of children with Down syndrome.” American Journal on Mental Retardation
97, no. 5 (March 1993): 521–29.
Eisenberg, Laurie, et al. “Siblings of children with mental retardation living at home or in residential placement.” Journal of Child Psychology & Psychiatry 39, no. 3 (March 1998): 355–63.
Gath, Ann, and Dianne Gumley. “Retarded children and their siblings.” Journal of Child Psychology & Psychiatry 28, no. 5 (September 1987): 715–30.
Grossman, Frances Kaplan. Brothers and Sisters of Retarded Children: An Exploratory Study. Syracuse, NY: Syracuse University Press, 1972.
McHale, Susan, and Wendy Gamble. “Sibling relationships of children with disabled and nondisabled brothers and sisters.” Developmental Psychology 25, no. 3 (May 1989): 421–29.
Rossiter, Lucille, and Donald Sharpe. “The siblings of individuals with mental retardation: A quantitative integration of the literature.” Journal of Child & Family Studies 10, no. 1 (March 2001): 65–84.
Skotko, Brian G., and Susan P. Levine. “What the other children are thinking: Brothers and sisters of persons with Down syndrome.” American Journal of Medical Genetics Part C: Seminars in Medical Genetics 142C, no. 3 (August 15, 2006): 180–85.
Skotko, Brian G., Susan P. Levine, and Richard Goldstein. “Having a brother or sister with Down syndrome: Perspectives from siblings.” American Journal of Medical Genetics Part A 155, no. 10 (October 2011): 2348–59.
Stoneman, Zolinda. “Supporting positive sibling relationships during childhood.” Mental Retardation & Developmental Disability Research Reviews 7 (May 2001): 134–42.
Stoneman, Zolinda, and Phyllis Waldman Berman, editors. The Effects of Mental Retardation, Disability, and Illness on Sibling Relationships. Baltimore: Paul H. Brookes, 1993.
Stoneman, Zolinda, et al. “Childcare responsibilities, peer relations, and sibling conflict: Older siblings of mentally retarded children.” American Journal on Mental Retardation 93, no. 2 (September 1988): 174–83.
———.“Ascribed role relations between children with mental retardation and their younger siblings.” American Journal on Mental Retardation 95, no. 5 (March 1991): 537–50.
Summers, Carl R., K. R. White, and M. Summers. “Siblings of children with a disability: A review and analysis of the empirical literature.” Journal of Social Behavior & Personality 9, no. 5 (1994): 169–84.
Summers, Jeanne Ann, 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, ed. George H. S. Singer and Larry K. Irvin, 27–40. Baltimore: Paul H. Brookes, 1989.
Wilson, Judith, et al. “Siblings of children with severe handicaps.” Mental Retardation 27, no. 3 (June 1989): 167–73.
567 The quotation from Colgan Leaming comes from her article “My brother is not his disability,” Newsweek Web Exclusive, June 1, 2006.
568 This passage is based on my interviews with Susan Arnsten, Adam Delli-Bovi, Teegan Delli-Bovi, and William Walker Russell III in 2007 and subsequent communications. Susan’s artwork may be seen at http://fineartamerica.com/profiles/susan-arnstenrussell.html.
569 Exodus 37:9: “The cherubs were with wings spread upwards, sheltering the Ark cover . . . with their faces toward one another.”
570 Statistics on the percentage of mentally retarded adults who live with their parents come from Tamar Heller, Alison B. Miller, and Alan Factor, “Adults with mental retardation as supports to their parents: Effects on parental caregiving appraisal,” Mental Retardation 35, no. 5 (October 1997); see also Clare Ansberry, “Parents devoted to a disabled child confront old age,” Wall Street Journal, January 7, 2004.
571 The quotation about nurturing and support comes from Arnold Birenbaum and Herbert J. Cohen, “On the importance of helping families,” Mental Retardation 31, no. 2 (April 1993).
572 The relationship between severity of disability and out-of-home placement is explored in Jan Blacher and Bruce L. Baker, “Out-of-home placement for children with retardation: Family decision making and satisfaction,” Family Relations 43, no. 1 (January 1994).
573 The fears of siblings following outplacement of a family member are discussed in Frances Kaplan Grossman, Brothers and Sisters of Retarded Children: An Exploratory Study (1972).
574 For my discussion of families and placement of children with Down syndrome, I have relied upon the following papers by Bruce L. Baker and Jan Blacher: “Out-of-home placement for children with mental retardation: Dimensions of family involvement,” American Journal on Mental Retardation 98, no. 3 (November 1993); “For better or worse? Impact of residential placement on families,” Mental Retardation 40, no. 1 (February 2002); “Family involvement in residential treatment of children with retardation: Is there evidence of detachment?,” Journal of Child Psychology & Psychiatry 35, no. 3 (March 1994); and “Out-of-home placement for children with retardation: Family decision making and satisfaction,” Family Relations 43, no. 1 (January 1994).
575 The quotation from the first mother (“I could never put my child in one of those places!”) occurs on pages 229–30 of Jan Blacher, When There’s No Place Like Home: Options for Children Living Apart from Their Natural Families (1994); the quotation from the second (“Calling the Regional Center was the scariest phone call I ever made”) comes from Jan Blacher and Bruce L. Baker, “Out-of-home placement for children with retardation: Family decision making and satisfaction,” Family Relations 43, no. 1 (January 1994).
576 For discussion of the appropriateness of young people with Down syndrome leaving the family home at a similar age to typical young people, see Zolinda Stoneman and Phyllis Waldman Berman, editors, The Effects of Mental Retardation, Disability, and Illness on Sibling Relationships (1993).
577 Figures for the reduction in numbers and proportion of children and youth living in residential institutions come from K. Charlie Lakin, Lynda Anderson, and Robert Prouty, “Decreases continue in out-of-home residential placements of children and youth with mental retardation,” Mental Retardation 36, no. 2 (April 1998). According to the State of the States in Developmental Disabilities Project report “Top Ten State Spending on Institutional Care for People with Disabilities” (at http://www.centerforsystemschange.org/view.php?nav_id=54), “Alaska, District of Columbia, Hawaii, Maine, Michigan, New Hampshire, New Mexico, Oregon, Rhode Island, Vermont, and West Virginia no longer fund state-operated institutions for 16 or more persons,” leaving thirty-nine of the fifty states still funding state-operated institutions for sixteen or more persons. The increase in life expectancy of people with Down syndrome and other forms of intellectual disability is discussed in Matthew P. Janicki et al., “Mortality and morbidity among older adults with intellectual disability: Health services considerations,” Disability & Rehabilitation 21, nos. 5–6 (May–June 1999).
578 Information on the number of institutions visited by families prior to placement, and criteria used in evaluating them, come from Jan Blacher and Bruce L. Baker, “Out-of-home placement for children with retardation: Family decision making and satisfaction,” Family Relations 43, no. 1 (January 1994).
579 The quotation about abuses in residential facilities for the developmentally disabled in New York State comes from Danny Hakim, “At state-run homes, abuse and impunity,” New York Times, March 12, 2011.
580 Information on trends in residential placement and statistics on public expenditures for people with intellectual disabilities come from Robert W. Prouty et al., editors, “Residential services for persons with developmental disabilities: Status and trends through 2004,” Research and Training Center on Community Living, Institute on Community Integration/UCEDD College of Education and Human Development, University of Minnesota, July 2005; K. Charlie Lakin, Lynda Anderson, and Robert Prouty, “Decreases continue in out-of-home residential placements of children and youth with mental retardation,” Mental Retardation 36, no. 2 (April 1998); and K. Charlie Lakin, Lynda Anderson, and Robert Prouty, “Change in residential placements for persons with intellec
tual and developmental disabilities in the USA in the last two decades,” Journal of Intellectual & Developmental Disability 28, no. 2 (June 2003).
581 Parents describe their adult DS children as a comfort in Tamar Heller, Alison B. Miller, and Alan Factor, “Adults with mental retardation as supports to their parents: Effects on parental caregiving appraisal,” Mental Retardation 35, no. 5 (October 1997); and Clare Ansberry, “Parents devoted to a disabled child confront old age,” Wall Street Journal, January 7, 2004. Figures on the numbers of people with DS moved to residential placement after the death of their parents come from Marsha Mailick Seltzer and Marty Wyngaarden Krauss, “Quality of life of adults with mental retardation/developmental disabilities who live with family,” Mental Retardation & Developmental Disabilities Research Reviews 7, no. 2 (May 2001).
582 The quotation from the father about his DS daughter’s dwindling social life comes from a personal communication.
583 The study finding that adults with DS tend to socialize within their parents’ network of friends is Marty Wyngaarden Krauss, Marsha Mailick Seltzer, and S. J. Goodman, “Social support networks of adults with mental retardation who live at home,” American Journal on Mental Retardation 96, no. 4 (January 1992).
584 For more information on People First, see “History of People First,” http://www.peoplefirstwv.org/aboutpeoplefirst/history.html. Figures on the number of self-advocacy groups in the United States and the quotation given both come from the “People First Chapter Handbook and Toolkit” (2010), http://www.peoplefirstwv.org/images/PF_of_WV_Chapter_Handbook_final.pdf.
585 See Nigel Hunt, The World of Nigel Hunt: The Diary of a Mongoloid Youth (New York: Garrett Publications, 1967).
586 See Jason Kingsley and Mitchell Levitz, Count Us In: Growing Up with Down Syndrome (1994).
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