990 Sarah Hrdy’s observation (“Nurturing has to be teased out, reinforced, maintained . . .”) occurs on page 174 of her book Mother Nature: Maternal Instincts and How They Shape the Human Species (1999).
991 The characterization of maternal attachment as “transactional, rather than linear and unidirectional” comes from Carol George and Judith Solomon, “Attachment and caregiving: The caregiving behavioral system,” in Handbook of Attachment: Theory, Research, and Clinical Applications, edited by Jude Cassidy and Phillip R. Shaver (1999), page 659.
992 Carrie Knoll tells the story of her encounter with parents of a child with holoprosencephaly in her article “In parents’ eyes, the faintest signs of hope blur the inevitable,”Los Angeles Times, October 28, 2002.
993 This passage is based on my interview with Louis and Greta Winthrop in 2005. All names in this passage are pseudonyms.
994 Sophia Isako Wong’s question (“. . . what rewards do parents expect . . .”) comes from her article “At home with Down syndrome and gender,” Hypatia 17, no. 3 (Summer 2002).
995 See Simon Olshansky, “Chronic sorrow: A response to having a mentally defective child,” Social Casework 43, no. 4 (1962).
996 Sigmund Freud, Mourning and Melancholia, vol. 14, The Standard Edition of the Complete Psychological Works of Sigmund Freud (1955). From page 243: “The distinguishing mental features of melancholia are a profoundly painful dejection, cessation of interest in the outside world, loss of the capacity to love, inhibition of all activity, and a lowering of the self-regarding feelings to a degree that finds utterance in self-reproaches and self-revilings, and culminates in a delusional expectation of punishment. This picture becomes a little more intelligible when we consider that, with one exception, the same traits are met with in mourning. The disturbance of self-regard is absent in mourning; but otherwise the features are the same. Profound mourning, the reaction to the loss of someone who is loved, contains the same painful frame of mind, the same loss of interest in the outside world—in so far as it does not recall him—the same loss of capacity to adopt any new object of love (which would mean replacing him) and the same turning away from any activity that is not connected with thoughts of him. It is easy to see that this inhibition and circumscription of the ego is the expression of an exclusive devotion to mourning which leaves nothing over for other purposes or other interests. It is really only because we know so well how to explain it that this attitude does not seem to us pathological.”
997 The reference to “. . . the deadly pall of tragedy . . .” occurs on page 27 of 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).
998 Discrepancies between professionals’ observations of family stress and family members’ actual experience are discussed in Anne E. Kazak and Robert S. Marvin, “Differences, difficulties and adaptation: Stress and social networks in families with a handicapped child,” Family Relations 33, no. 1 (January 1984).
999 Jerome Groopman’s comment about language (“Language is as vital to the physician’s art as the stethoscope . . .”) occurs in his article “Hurting all over,” New Yorker, November 13, 2000.
1000 This passage is based on my interview with Paul and Cris Donovan in 2007 and subsequent communications.
1001 For more background on CHARGE syndrome, see Kim D. Blake and Chitra Prasad’s paper, “CHARGE syndrome,” Orphanet Journal of Rare Diseases 1 (September 7, 2006).
1002 For research finding that social isolation is a risk factor for depression and attachment impairment, see pages 93–95 of Infants in Crisis: How Parents Cope with Newborn Intensive Care and Its Aftermath, edited by Glenn Affleck, Howard Tennen, and Jonelle Rowe (1991); see also Glenn Affleck 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).
1003 The concept of an “internal locus of control” is discussed in Bryony Beresford, “Resources and strategies: How parents cope with the care of a disabled child,” Journal of Child Psychology & Psychiatry 35, no. 1 (January 1994); and Emmy Werner and Ruth Smith, Journeys from Childhood to Midlife: Risk, Resilience, and Recovery (2001).
1004 This passage is based on my interview with Susanna Singer in 2006 and subsequent communications.
1005 Information on Dandy-Walker syndrome and Joubert syndrome can be found on the website of the National Institute of Neurological Disorders and Stroke, http://www.ninds.nih.gov; in Stephen Greenspan’s chapter, “Dandy-Walker syndrome,” in Health-Related Disorders in Children and Adolescents, edited by LeAdelle Phelps (1998), pages 219–23; and in Francesco Brancati, Bruno Dallapiccola, and Enza Valente’s paper, “Joubert syndrome and related disorders,” Orphanet Journal of Rare Diseases 5 (July 8, 2010).
1006 Hebrew Academy for Special Children website: http://www.hasc.net/.
1007 Cecilia Bartoli’s website: http://www.ceciliabartolionline.com.
1008 The statistic on the percentage of disabled children who live with parents into adulthood occurs on page 460 of The Parental Experience in Midlife, edited by Carol Ryff and Marsha Mailick Seltzer (1996).
1009 The modern increase in the life expectancy of disabled people is discussed on page 85 of Mental Retardation in the Year 2000, edited by Louis Rowitz (1992); see also Richard K. Eyman et al., “Survival of profoundly disabled people with severe mental retardation,” American Journal of Diseases of Childhood 147, no. 3 (1993). From the abstract: “Survival estimates for individuals who were immobile and could not roll over were short regardless of arm-hand use or feeding status, as were estimates for people who were tube fed. For individuals who could roll over, but were otherwise immobile, survival was relatively improved.”
1010 The role of parental caregiving in providing companionship and a sense of purpose is discussed 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).
1011 This passage is based on my interview with Bill Zirinsky and Ruth Schekter in 2005, and on Bill’s articles “Sam’s story,” Exceptional Parent, June 1997; “Saying goodbye to our cherished boy, Sam Zirinsky,”Crazy Wisdom Community Journal, May–August 2004; “Life with my two little girls,”Crazy Wisdom Community Journal, January–April 2006; and “If you could see her through my eyes: A journey of love and dying in the fall of 2007,” Crazy Wisdom Community Journal, January–April 2008.
1012 References cited in the paragraph about sibling adjustment: Finding siblings more responsible and tolerant: Sally L. Burton 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). Finding siblings more unhappy, but not suffering unduly from psychiatric problems: Naomi Breslau et al., “Siblings of disabled children: Effects of chronic stress in the family,” Archives of General Psychiatry 44, no. 12 (December 1987). Finding the worse the disability, the better the sibling adjustment: Frances Kaplan Grossman, Brothers and Sisters of Retarded Children: An Exploratory Study (1972), especially pages 177–78. Finding siblings were helped by a specific diagnosis: Ann Gath and Dianne Gumley, “Retarded children and their siblings,” Journal of Child Psychology & Psychiatry 28, no. 5 (September 1987).
1013 Allen Shawn describes his experience as the fraternal twin of a profoundly disabled sister in Twin: A Memoir (2010).
1014 This passage is based on my interviews with John, Eve, and Dylan Morris in 2007 and subsequent communications.
1015 The discussion of the Ashley treatment and ensuing controversy is based on my telephone interview with Ashley’s father in 2008 and subsequent communications; The “Ashley Treatment” weblog established by Ashley’s
parents at http://ashleytreatment.spaces.live.com, which is the source of all quotations from Ashley’s father’s writings; Chris Ayres and Chris Lackner, “Father defends decision to stunt disabled girl’s growth,” Ottawa Citizen, January 4, 2007; Elizabeth Cohen’s report for CNN “Disability community decries ‘Ashley treatment,’” broadcast January 12, 2007; Nancy Gibbs, “Pillow angel ethics,” Time, January 7, 2007; Ed Pilkington, “Frozen in time: The disabled nine-year-old girl who will remain a child all her life,”Guardian, January 4, 2007; Geneviève Roberts, “Brain-damaged girl is frozen in time by parents to keep her alive,” Independent, January 4, 2007; Sam Howe Verhovek, “Parents defend decision to keep disabled girl small,” Los Angeles Times, January 3, 2007; the CNN feature “‘Pillow angel’ parents answer CNN’s questions,” broadcast March 12, 2008; and the BBC report “Treatment keeps girl child-sized,” broadcast January 4, 2007.
1016 From Nancy J. Hitzfelder’s FAQ for Easter Seals, “Static encephalopathy: A basic explanation for parents” (1999), defines static encephalopathy: “’Static ’ means permanent or unchanging. The brain abnormality in SE is permanent or unchanging in the sense that it does not get worse. It is not progressive or degenerative. Unfortunately, it usually does not get better or improve much, either. This does not mean that the child will not get better. Many do. But most children with static encephalopathy will always have some degree of learning or developmental problems because they always have some degree of abnormal brain function.”
1017 The quotation from Douglas Diekema comes from the CNN report “Ethicist in Ashley case answers questions,” broadcast January 11, 2007.
1018 The quotations from Daniel Gunther come from the CNN report “Ethicist in Ashley case answers questions,” broadcast January 11, 2007; and from Nancy Gibbs, “Pillow angel ethics,” Time, January 7, 2007.
1019 For the clinical report of the Ashley treatment, see Daniel F. Gunther and Douglas S. Diekema, “Attenuating growth in children with profound developmental disability: A new approach to an old dilemma,” Archives of Pediatric & Adolescent Medicine 260, no. 10 (October 2006).
1020 The quotation from Arthur Caplan comes from his January 5, 2007, opinion piece for MSNBC, “Is ‘Peter Pan’ treatment a moral choice?”
1021 The reference to “surgical mutilation” occurs in a response to the article “The Ashley treatment,” on Burkhart’s Blog, January 6, 2007; “They might as well kill her” occurs in the article “The mistreatment of Ashley X,” Family Voyage, January 4, 2007.
1022 FRIDA’s statement was published in a press release on January 10, 2007, http://fridanow.blogspot.com/2007/01/for-immediate-release-january-10-2007.html. In full: “People with disabilities and families nationwide have reacted with outrage to the drastic medical ‘solution’ to what is actually a complex social problem of finding real supports for people with disabilities and their families. FRIDA is also not surprised that the initial recipient of the ‘Ashley Treatment’ was a little girl, given that girls, and girls with disabilities in particular, are perceived as easier subjects for mutilation and desexualization.”
1023 Helen Henderson deplored the advent of “designer cripples” in her op-ed piece “Earthly injustice of ‘pillow angels,’” Toronto Star, June 27, 2009.
1024 Julia Epstein’s characterization of the Ashley treatment as “terminally infantilizing” occurs in Nancy Gibbs, “Pillow angel ethics,” Time, January 7, 2007.
1025 The two statements by mothers of severely disabled children come from Elizabeth Cohen’s report for CNN “Disability community decries ‘Ashley treatment,’” broadcast January 12, 2007 (quoting Penny Richards, “Sigh,” Temple University Disability Studies Weblog, January 5, 2007; and article by “Nufsaid,” “The world has gone completely nuts,” Ramblings, January 4, 2007).
1026 The Seattle Growth Attenuation and Ethics Working Group statement comes from Benjamin S. Wilfond et al., “Navigating growth attenuation in children with profound disabilities: Children’s interests, family decision-making, and community concerns,” Hastings Center Report 40, no. 6 (November–December 2010).
1027 Norman Fost characterizes public concern about the “Ashley treatment” as intrusive in his article “Offense to third parties?,” whereas Eva Feder Kittay characterizes the procedure as discriminatory in “Discrimination against children with cognitive impairments?”; both were published in Hastings Center Report 40, no. 6 (November–December 2010).
1028 The MSNBC survey was described in the CNN report “‘Pillow angel’ parents answer CNN’s questions,” broadcast March 12, 2008.
1029 The quotation from Daniel Gunther (“The argument that a beneficial treatment should not be used . . .”) occurs in Nancy Gibbs, “Pillow angel ethics,” Time, January 7, 2007.
1030 The quotation from Peter Singer (“What matters in Ashley’s life . . .”) occurs in his op-ed piece “A convenient truth,” New York Times, January 26, 2007.
1031 I here draw from William Shakespeare’s Sonnet 116
Let me not to the marriage of true minds
Admit impediments; love is not love
Which alters when it alteration finds,
Or bends with the remover to remove.
O no, it is an ever-fixed mark,
That looks on tempests and is never shaken;
It is the star to every wand’ring bark,
Whose worth’s unknown, although his height be taken.
Love’s not Time’s fool, though rosy lips and cheeks
Within his bending sickle’s compass come;
Love alters not with his brief hours and weeks,
But bears it out even to the edge of doom.
If this be error and upon me proved,
I never writ, nor no man ever loved.
390 The quotations from Anne McDonald come from her article “The other story from a ‘pillow angel’: Been there. Done that. Preferred to grow,” Seattle Post-Intelligencer, June 15 2007.
1032 The quotation about the uncertainties of prognosis for communication in three-year-olds comes from a letter by Miriam A. Kalichman published online as “Replies to growth-attenuation therapy: Principles for practice,” Pediatrics (June 18, 2009).
1033 The quotation from Alice Domurat Dreger comes from her article “Attenuated thoughts,” Hastings Center Report 40, no. 6 (November–December 2010).
1034 The quotation from Norman Kunc (“From the age of three until the age of twelve . . .”) comes from his interview with Michael F. Giangreco, “The stairs don’t go anywhere! A disabled person’s reflections on specialized services and their impact on people with disabilities,” University of Vermont, September 7, 1996, http://www.normemma.com/articles/arstairs.htm.
1035 Examples of references to genocide in the literature of disability include Paddy Ladd and Mary John, “Deaf people as a minority group: The political process,” in the 1992 Open University syllabus Constructing Deafness: Social Construction of Deafness: Deaf People as a Minority Group—the Political Process (“A major piece of recent legislation was the 1981 Education Act, which enforced the idea of mainstreaming. The policy of ’integration’ was seen by Deaf people within the movement as a policy of assimilation: ’This legislation thus endorsed the genocide of the deaf community by breaking up its roots. So-called integration has become Oralism’s Final Solution’ (NUD, circa 1982).”); Harlan Lane, “Ethnicity, ethics and the deaf-world,” Journal of Deaf Studies & Deaf Education 10, no. 3 (Summer 2005) (“A third argument against the disability label for the Deaf-World concerns the risk to the Deaf-World as a whole if that representation prevails. A majority of people in the Deaf-World have inherited their ethnicity. Deaf inheritance and a failure to understand the ethnic status of culturally Deaf people have historically and at present placed the Deaf-World in jeopardy of ethnocide and even genocide.”); and Bridget Brown’s letter to the Chicago Tribune and Time magazine, Down Syndrome Development Council Forum 6, March 2007, page 3 (“I am a young woman with Down Syndrome. I am so sad to hea
r about all the babies with Down Syndrome being aborted. I am so grateful that I was not aborted because I have a full and wonderful life! I do not “suffer” from Down Syndrome. I believe in the sacred dignity of all people and most people I know with disabilities have full and productive lives. I learned about what Hitler did during the Holocaust. He killed many people he did not think had the right to live. He learned how to kill by killing people with disabilities first. My heart broke when I learned about this at the Holocaust museum. It seems to me we are doing the same thing to children with disabilities today in our country. I think this is like genocide—the systematic killing of a whole people or nation. I wonder why we think Hitler was so horrible when we are doing the same thing he did? My heart breaks again when I think that I might be the last generation of people with Down Syndrome. The world will never again benefit from our gifts. I will hold hope for people with disabilities and for all the people who think we don’t have the right to live.”).
1036 Peter Singer’s description of Frank Shann occurs on pages 38–56 of Rethinking Life and Death: The Collapse of Our Traditional Ethics (1994); the quotation “If the cortex of the brain is dead . . .” occurs on page 42.
1037 Peter Singer’s statement “Killing a disabled infant is not morally equivalent to killing a person” occurs on page 191 of Practical Ethics, 2nd ed. (1993). Singer’s definition of person can be found on pages 86–87. In full: “I shall for the moment put aside the tricky term ’human’ and substitute two different terms, corresponding to the two different senses of ’human.’ For the first sense, the biological sense, I shall simply use the cumbersome but precise expression ’member of the species Homo sapiens’ while for the second sense I shall use the term ’person.’
“This use of ’person’ is itself, unfortunately, liable to mislead, since ’person’ is often used as if it meant the same as ’human being.’ Yet the terms are not equivalent; there could be a person who is not a member of our species. There could also be members of our species who are not persons. The word ’person’ has its origin in the Latin term for a mask worn by an actor in classical drama. By putting on masks the actors signified that they were acting a role. Subsequently ’person’ came to mean one who plays a role in life, one who is an agent. According to the Oxford Dictionary, one of the current meanings of the term is ’a self-conscious or rational being.’ This sense has impeccable philosophical precedents. John Locke defines a person as ’A thinking intelligent being that has reason and reflection and can consider itself as itself, the same thinking thing, in different times and places.’
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