1590 See Martin J. Kidston, “Helena prodigal son returning as woman,” Independent Record, September 24, 2009; see also Kidston’s report on the film showing two days later, “250 pack church for transgender documentary,”Independent Record, September 26, 2009.
1591 The lines by Alfred, Lord Tennyson come from “In memoriam A.H.H.” (1849), on page 155 of The Complete Works of Alfred Lord Tennyson (1891).
1592 My book about Russian art is The Irony Tower: Soviet Artists in a Time of Glasnost (1991).
XII: Father
1593 The quotations from Bree Walker and the talk-show hosts (“It was shocking to me . . .” and “Is it fair . . .”) come from Daniel Corone, “Bree Walker blasts KFI’s Baby Talk,” Los Angeles Times, August 17, 1991.
1594 The second quotation from Bree Walker (“I felt that my pregnancy had been terrorized . . .”) comes from Steven A. Holmes, “Radio talk about TV anchor’s disability stirs ire in Los Angeles,” New York Times, August 23, 1991; the third and fourth (“The darkest moment of my life” and “Tossed the coin . . .”) come from her interview with ABC News, “Medical mystery: Ectrodactyly,” broadcast on January 29, 2007.
1595 The quotation from Bill Holt (“For anyone to determine that Bree Walker should not have children . . .”) comes from Daniel Corone, “Bree Walker blasts KFI’s Baby Talk,” Los Angeles Times, August 17, 1991.
1596 All quotations from Joanna Karpasea-Jones come from her article “Daring dis-abled parenting,” Mothering, November–December 2007.
1597 The quotation from Adrienne Asch (“Chronic illness and disability are not equivalent to acute illness or sudden injury . . .”) comes from pages 1650–51 of her article “Prenatal diagnosis and selective abortion: A challenge to practice and policy,” American Journal of Public Health 89, no. 11 (November 1999). It has been condensed. In full: “Chronic illness and disability are not equivalent to acute illness or sudden injury, in which an active disease process or unexpected change in physical function disrupts life’s routines. Most people with conditions such as spina bifida, achondroplasia, Down syndrome, and many other mobility and sensory impairments perceive themselves as healthy, not sick, and describe their conditions as givens of their lives—the equipment with which they meet the world. The same is true for people with chronic conditions such as cystic fibrosis, diabetes, hemophilia, and muscular dystrophy. These conditions include intermittent flare-ups requiring medical care and adjustments in daily living, but they do not render the person as unhealthy as most of the public—and members of the health profession—imagine.”
1598 See Laura Rothenberg, Breathing for a Living (2004), and my article “The Amazing Life of Laura,” Glamour, July 2003.
1599 The reference to “made-to-order babies” comes from Lindsey Tanner, “Physicians could make the perfect imperfect baby,” Los Angeles Times, December 31, 2006.
1600 For the survey finding that 3 percent of PGD clinics have selected for disability, see Susannah Baruch, David Kaufman, and Kathy L. Hudson, “Genetic testing of embryos: Practices and perspectives of US in vitro fertilization clinics,” Fertility & Sterility 89, no. 5 (May 2008).
1601 Robert J. Stillman’s comment (“. . . Dwarfism and deafness are not the norm”) occurs in Darshak Sanghavi, “Wanting babies like themselves, some parents choose genetic defects,” New York Times, December 5, 2006. In full: “Dr. Robert J. Stillman of the Shady Grove Fertility Center in Rockville, Md., has denied requests to use the process for selecting deafness and dwarfism. ‘In general, one of the prime dictates of parenting is to make a better world for our children,’ he said in an interview. ‘Dwarfism and deafness are not the norm.’”
1602 The quotation from Michael Beérubeé (“The question is whether we will maintain a social system that makes allowance for unpredictability . . .”) occurs on page 86 of his memoir, Life as We Know It: A Father, a Family and an Exceptional Child (1996).
1603 The Human Fertilisation and Embryology Act 2008 represented an amendment and updating of legislation enacted in 1990; for the full text, see http://www.legislation.gov.uk/ukpga/2008/22/contents. The controversy over its provisions pertaining to disability was described in Steven D. Emery, Anna Middleton, and Graham H. Turner, “Whose deaf genes are they anyway?: The Deaf community’s challenge to legislation on embryo selection,” Sign Language Studies 10, no. 2 (Winter 2010). The comment by pseudonymous blogger Mishka Zena comes from the post “Eugenics too close to home: Tomato Lichy, U.K. activist,” Endless Pondering, March 10, 2008, at http://www.mishkazena.com/2008/03/10/eugenics-too-close-to-home-tomato-livy-uk-activist.
1604 Sharon Duchesneau and Candace McCullough tell their story in Liz Mundy, “A world of their own,” Washington Post Magazine, March 31, 2002. For a scholarly article about this case, see Humphrey-Dirksen Bauman, “Designing deaf babies and the question of disability,” Journal of Deaf Studies & Deaf Education 10, no. 3 (Summer 2005).
1605 See Wendy McElroy, “Victims from birth: Engineering defects in helpless children crosses the line,” FOX News, April 9, 2002.
1606 John Sproston’s letter to the editor expressing dismay at Sharon Duchesneau and Candace McCullough’s desire to give birth to a deaf child (“That three people could deliberately deprive another person of a natural faculty . . .”) was published in the Washington Post on June 9, 2004, and is quoted in Judith F. Daar, “ART and the search for perfectionism: On selecting gender, genes, and gametes,” Journal of Gender, Race and Justice 9, no. 2 (Winter 2005).
1607 The quotation from John Corvino (“They could have chosen a different donor . . .”) comes from his article “Why Baby Gauvin is not a victim,” Gay & Lesbian Review Worldwide 9, no. 6 (2002).
1608 Patrick Boudreault’s comment (“No one is talking, ever, about deliberately deafening a child born hearing”) comes from a personal communication in 2008.
1609 Sean Tipton’s comment about the usual desire of parents to bring forth children who resemble them, and Sharon’s and Candy’s replies, come from Liza Mundy, “A world of their own,” Washington Post Magazine, March 31, 2002.
1610 Carina Dennis’s observation (“Communication and the pursuit of intimacy are central to being human . . .”) occurs on page 894 of her article “Genetics: Deaf by design,”Nature 431 (October 21, 2004).
1611 See William Saletan, “Deformer babies: The deliberate crippling of children,” Slate, September 21, 2006.
1612 The Johns Hopkins survey of PGD clinics is described in Susannah Baruch, David Kaufman, and Kathy L. Hudson, “Genetic testing of embryos: Practices and perspectives of US in vitro fertilization clinics,” Fertility & Sterility 89, no. 5 (May 2008).
1613 See Gautam Naik, “A baby, please. Blond, freckles, hold the colic: Laboratory techniques that screen for diseases in embryos are now being offered to create designer children,” Wall Street Journal, February 12, 2009.
1614 See the University College London press release “First baby tested for breast cancer form BRCA1 before conception born in U.K.,” January 9, 2009; and the CNN report “‘Cancer-free’ baby born in London,” broadcast January 9, 2009.
1615 The Los Angeles Fertility Institutes’ plans to offer selection for gender, hair, and eye color were described in Gautam Naik, “A baby, please. Blond, freckles, hold the colic: Laboratory techniques that screen for diseases in embryos are now being offered to create designer children,” Wall Street Journal, February 12, 2009.
1616 Results of the Johns Hopkins survey of public opinion regarding genetic testing are reported in Aravinda Chakravarti et al., Reproductive Genetic Testing: What America Thinks (2004).
1617 See Michael J. Sandel, The Case Against Perfection (2007).
1618 The quotation from Marc Lappé (“It would be unthinkable and immoral . . .”) comes from his pioneering paper on genetic selection, “How much do we want to know about the unborn?,” Hastings Center Report 3, no. 1 (February 1973).
1619 Patricia Bauer’s observation that “prenatal testing is making your right to a
bort a disabled child more like your duty to abort a disabled child” comes from her article “The abortion debate no one wants to have,” Washington Post, October 18, 2005.
1620 The statement “American mobility is exceptional; where we stand out is our limited mobility from the bottom” comes from Scott Winship, “Mobility impaired,” National Review, November 14, 2011.
1621 See Gurinder Osan, “Baby with two faces born in North India,” Associated Press/MSNBC, April 9, 2008. All quotations come from this report.
1622 Lali’s death from a heart attack was reported on the BBC Channel 4 program Body Shock, broadcast September 16, 2008.
1623 New Haven’s arboreal tragedy and the city’s recovery efforts are described in Charlotte Libov, “New Haven holding on to ‘Elm City’ nickname,” New York Times, April 24, 1988; Bruce Fellman, “The Elm City: Then and now,” Yale Alumni Magazine, September/October 2006; and David K. Leff, “Remaining elms hint at tree’s elegant past,” Hartford Courant, October 27, 2011.
1624 Our journey and that of other gay parents who seek to create a family through assisted reproductive technology is described in Emma Brockes, “Gay parenting: It’s complicated,” Guardian, April 20, 2012. I wrote about our experiences in “Meet my real modern family,” Newsweek, January 30, 2011.
1625 Roger Penrose discusses the anthropic principle on pages 433–34 of The Emperor’s New Mind: Concerning Computers, Minds, and the Laws of Physics (1989).
1626 The quotation from William Dean Howells (“what the American public always wants is a tragedy with a happy ending”) occurs on page 147 of Edith Wharton’s autobiography, A Backward Glance (1934).
1627 Compare, for example, the insight-oriented approach advocated by psychologists such as Erik H. Erikson (see his 1959 anthology, Identity and the Life Cycle) with the cognitive techniques described by Martin Seligman in Learned Optimism (1991).
Bibliography
Abbott, Douglas A., and William H. Meredith. “Strengths of parents with retarded children.” Family Relations 35, no. 3 (July 1986): 371–75. [Full text by subscription]
Abbott, Jack Henry. In the Belly of the Beast: Letters from Prison. New York: Random House, 1981. [Google Books] [WorldCat]
Abi-Dargham, Anissa, et al. “Increased baseline occupancy of D2 receptors by dopamine in schizophrenia.” Proceedings of the National Academy of Sciences 97, no. 14 (July 2000): 8104–9. [PubMed abstract] [PMC free full text] [Free full text]
Ablon, Joan. “Dwarfism and social identity: Self-help group participation.” Social Science & Medicine 15B (1981): 25–30. [PubMed abstract] [Full text by subscription]
———. Little People in America: The Social Dimension of Dwarfism. New York: Praeger, 1984. [Google Books] [WorldCat]
———. Living with Difference: Families with Dwarf Children. New York: Praeger, 1988. [Google Books] [WorldCat]
———. “Ambiguity and difference: Families with dwarf children.” Social Science & Medicine 30, no. 8 (April 1990): 879–87. [PubMed abstract] [Full text by subscription]
———. “Personality and stereotype in osteogenesis imperfecta: Behavioral phenotype or response to life’s hard challenges?” American Journal of Medical Genetics 122A (October 15, 2003): 201–14. [PubMed abstract] [Full text by subscription]
———. Brittle Bones, Stout Hearts and Minds: Adults with Osteogenesis Imperfecta. Sudbury, MA: Jones and Bartlett Publishers, 2010. [Google Books] [WorldCat]
Abraham, Willard. Barbara: A Prologue. New York: Rinehart, 1958. [Google Books] [WorldCat]
Abrahams, Brett S., and Daniel H. Geschwind. “Advances in autism genetics: On the threshold of a new neurobiology.” Nature Review Genetics 9, no. 5 (May 2008): 341–55. [PubMed abstract] [PMC free full text] [Full text by subscription]
Abramsky, Sasha, and Jamie Fellner. Ill-Equipped: U.S. Prisons and Offenders with Mental Illness. New York: Human Rights Watch, 2003. [Free full text]
Accardo, Pasquale J., Christy Magnusen, and Arnold J. Capute, eds. Autism: Clinical and Research Issues. Baltimore: York Press, 2000. [Google Books] [WorldCat]
Ackerman, Elise, et al. “Who gets abortions and why.” U.S. News & World Report, January 19, 1998. [Free full text]
Adams, Paul, and Kristine Nelson, eds. Reinventing Human Services. New York: Aldine de Gruyter, 1996. [Google Books] [WorldCat]
Addington, Jean, et al. “The first episode of psychosis: The experience of relatives.” Acta Psychiatrica Scandinavica 108, no. 4 (October 2003): 285–89. [PubMed abstract] [Full text by subscription]
Adelson, Betty M. Dwarfism: Medical and Psychosocial Aspects of Profound Short Stature. Baltimore: Johns Hopkins University Press, 2005. [Google Books] [WorldCat]
———. The Lives of Dwarfs: Their Journey from Public Curiosity Toward Social Liberation. New Brunswick, NJ: Rutgers University Press, 2005. [Google Books] [WorldCat]
Adelson, Betty, and Joe Stramondo. Unpublished letter to the editor of the New York Times, 2005.
Adoption.com Forums. “Children born of rape.” Public discussion. Mesa, AZ: Adoption Media, 2004–06. [Free full text]
Advanced Bionics. “The Reason to Choose AB.” Valencia, CA: Advanced Bionics, 2009. [Free full text]
———. “Hear Your Best.” Valencia, CA: Advanced Bionics, 2011. [Free full text]
Advertising Standards Authority. “ASA adjudication on the Option Institute and Fellowship.” Complaint Reference 104067. London: Advertising Standards Authority, March 3, 2010. [Free full text]
Affleck, Glenn, and Howard Tennen. “Appraisal and coping predictors of mother and child outcomes after newborn intensive care.” Journal of Social & Clinical Psychology 10, no. 4 (1991): 424–47. [Full text by subscription]
Affleck, Glenn, Howard Tennen, and Jonelle Rowe, eds. Infants in Crisis: How Parents Cope with Newborn Intensive Care and Its Aftermath. New York: Springer, 1991. [Google Books] [WorldCat]
African Commission on Human and Peoples’ Rights International Work Group for Indigenous Affairs. Report of the African Commission’s Working Group on Indigenous Populations/Communities: Research and Information Visit to the Republic of Gabon, 15–30 September 2007. Copenhagen: International Work Group for Indigenous Affairs, 2010. [Free full text]
Agnew, Robert, and Sandra Huguley. “Adolescent violence toward parents.” Journal of Marriage & the Family 51, no. 3 (August 1989): 699–711. [Full text by subscription]
Ahmad, Waqar, Karl Atkin, and Lesley Jones. “Being deaf and being other things: Young Asian people negotiating identities.” Social Science & Medicine 55. no. 10 (2002): 1757–69. [PubMed abstract] [Full text by subscription]
Akter, K., et al. “A review of the possible role of the essential fatty acids and fish oils in the aetiology, prevention or pharmacotherapy of schizophrenia.” Journal of Clinical Pharmacy & Therapeutics 37, no. 2 (April 2012): 132–39. [PubMed abstract] [Full text by subscription]
Alatzoglou, Kyriaki S., and Mehul T. Dattani. “Genetic causes and treatment of isolated growth hormone deficiency: An update.” Nature Reviews Endocrinology 6, no. 10 (October 2010): 562–76. [PubMed abstract] [Full text by subscription]
Albl, Martin. “Abortion false solution: Support, protect life.” Aberdeen American News, October 19, 2006.
Albo, Mike. “The official Justin Bond.” Out, April 11, 2011. [Free full text]
Alborz, Alison. “Transitions: Placing a son or daughter with intellectual disability and challenging behaviour in alternative residential provision.” Journal of Applied Research in Intellectual Disabilities 16, no. 1 (March 2003): 75–88. [Free full text]
Albrecht, Gary L. The Disability Business: Rehabilitation in America. London: Sage, 1992. [Google Books] [WorldCat]
Alcalá, Carlos. “Radio segment on transgender kids raises hackles.” 21Q: A Bee Entertainment Blog, June 2, 2009. .
———. “Under fire, radio host says transgender comments were ‘a joke.’” Sacramento Bee, June 4, 2009.
———. “On-air controversy: Radio show ba
ck today with transgender advocates.” Sacramento Bee, June 11, 2009.
Aleccia, JoNel. “Emerging from silence: Deaf community divided over cochlear implants.” Spokesman-Review, April 23, 2006. [Full text by subscription]
Alexander Graham Bell Association. “The cost of cochlear implants.” Washington, DC: Alexander Graham Bell Association, 2011. [Free full text]
Alisky, Joseph M., and Kenneth A. Iczkowski. “Barriers to housing for deinstitutionalized psychiatric patients.” Hospital & Community Psychiatry 41, no. 1 (January 1990): 93–95. [PubMed abstract] [Full text by subscription]
Allan, Clare. “Misplaced pride.” Guardian, September 27, 2006. [Free full text]
Allanson, Judith E., and Judith G. Hall. “Obstetric and gynecologic problems in women with chondrodystrophies.” Obstetrics & Gynecology 67, no. 1 (January 1986): 74–78. [PubMed abstract] [Full text by subscription]
Allday, Erin. “UCSF, Stanford autism study shows surprises.” San Francisco Chronicle, July 5, 2011. [Free full text]
Allegretti, Christina M. “The effects of a cochlear implant on the family of a hearing-impaired child.” Pediatric Nursing 28, no. 6 (November 2002): 614–20. [PubMed abstract] [Full text by subscription]
Allen, Ann Taylor. “The kindergarten in Germany and the United States, 1840–1914: A comparative perspective.” History of Education 35, no. 2 (March 2006): 173–88. [ERIC abstract] [Full text by subscription]
Allen, Arthur . . “Inoculated into oblivion.” Salon, April 13, 2000. [Free full text]
———. “Sound and fury.” Salon, May 24, 2000. [Free full text]
———. “A recipe for disaster.” Salon, August 2, 2000. [Free full text]
———. Vaccine: The Controversial Story of Medicine’s Greatest Lifesaver. New York: W. W. Norton, 2007. [Google Books] [WorldCat]
Allen, Joseph, and Susan Philliber. “Who benefits most from a broadly targeted prevention program? Differential efficacy across populations in the teen outreach program.” Journal of Community Psychology 29, no. 6 (November 2001): 637–55. [PubMed abstract] [PMC free full text] [Free full text]
Far From the Tree Page 135