927 The quotation from Jeffrey Lieberman (“The problem is that people burn out . . .”) comes from my interview with him in 2009.
928 The quotation from Ezra Susser (“You have to be really careful . . .”) comes from my interview with him in 2008.
929 The referenced WHO study is Dan Chisholm et al., “Schizophrenia treatment in the developing world: An interregional and multinational cost-effectiveness analysis,” Bulletin of the World Health Organization 86, no. 8 (July 2008). A 1999 study from Nigeria disputes the claim that schizophrenia outcomes are better in developing countries; see Oye Gureje and Rotimi Bamidele, “Thirteen-year social outcome among Nigerian outpatients with schizophrenia,” Social Psychiatry & Psychiatric Epidemiology 34, no. 3 (March 1999).
930 The quotation from Cyril D’Souza (“It was very difficult for me to understand . . .”) comes from my interview with him in 2007.
931 The description of treatment of mental patients in Senegal is based on personal reporting I did there in 2000.
932 The quotation from Esso Leete (“Criticize only constructively . . .”) comes from her article “Interpersonal environment: A consumer’s personal recollection,” in Surviving Mental Illness: Stress, Coping, and Adaptation, edited by Agnes B. Hatfield and Harriet P. Lefley (1993).
933 The advice to “approach delusions in a spirit of shared inquiry” is made at East Community’s “Family and friends” webpage, http://www.eastcommunity.org/home/ec1/smartlist_12/family_and_friends.html.
934 The quotation from the father (“My loving, bright, amusing son . . .”) occurs on page 34 of Raquel E. Gur and Ann Braden Johnson, If Your Adolescent Has Schizophrenia: An Essential Resource for Parents (2006); the quotation from the mother (“These kids die but they never get buried”) occurs on page 93.
935 The quotation “The sick child inhabits a different world . . .” occurs on page 3 of Nona Dearth and Families of the Mentally Ill Collective, Families Helping Families: Living with Schizophrenia (1986).
936 The murder of Malcolm Tate is described on page 79 of E. Fuller Torrey, Out of the Shadows: Confronting America’s Mental Illness Crisis (1997). A judgment in Lothell Tate v. State of South Carolina, affirming Lothell Tate’s conviction for the murder of her brother, was issued by the South Carolina Supreme Court on April 13, 1992.
937 This passage is based on my interview with Rosemary Baglio in 2008.
938 Prolixin is an antipsychotic medication that works by blocking dopamine.
939 Anosognosia is the subject of Xavier Francisco Amador, I Am Not Sick, I Don’t Need Help! (2007).
940 “That proves you mad, because you know it not” occurs in act 4, scene 3 of Thomas Dekker’s 1604 play, The Honest Whore, reissued by Nick Hern Books in 1998.
941 The quotation from Elyn Saks (“We should not be in the business of choosing selves”) occurs on page 12 of her book Refusing Care: Forced Treatment and the Rights of the Mentally Ill (2002).
942 For more information on IQ and outcomes in schizophrenia, see Janet C. Munro et al., “IQ in childhood psychiatric attendees predicts outcome of later schizophrenia at 21 year follow-up,” Acta Psychiatrica Scandinavica 106, no. 2 (August 2002); and Maurizio Pompili et al., “Suicide risk in schizophrenia: Learning from the past to change the future,” Annals of General Psychiatry 6, no. 10 (2007).
943 The quotation from John Krystal (“You have no idea how many people you interact with who are hearing voices . . .”) comes from my interview with him in 2012.
944 Linda Bishop is the subject of Rachel Aviv, “God knows where I am: What should happen when patients reject their diagnosis?,” New Yorker, May 30, 2011.
945 Judi Chamberlin’s comment (“If it isn’t voluntary, it isn’t treatment”) occurs in David Davis, “Losing the mind,” Los Angeles Times, October 26, 2003. Chamberlin is the author of On Our Own: Patient-Controlled Alternatives to the Mental Health System (1978).
946 The Mad Pride movement is discussed in Gabrielle Glaser, “‘Mad pride’ fights a stigma,” New York Times, May 11, 2008.
947 The quotation from the Asheville Radical Mental Health Collective organizer (“It used to be you were labeled . . .”) comes from Gabrielle Glaser, “‘Mad pride’ fights a stigma,” New York Times, May 11, 2008.
948 The quotation from David Oaks (“They took a wrecking ball to the cathedral of my mind”), Sally Zinman’s praise of Oaks, and the American Psychiatric Association’s response come from David Davis, “Losing the mind,” Los Angeles Times, October 26, 2003.
949 Peter Breggin describes drug-induced improvement in schizophrenics as a “disability, a loss of mental capacity” on page 2 of Psychiatric Drugs: Hazards to the Brain (1983).
950 Psychiatric drug “pro-choice” advocates are featured in I. A. Robinson and Astrid Rodrigues, “‘Mad Pride’ activists say they’re unique, not sick,” ABC News, August 2, 2009.
951 The quotation from Will Hall occurs on page 3 of his book Harm Reduction Guide to Coming Off Psychiatric Drugs (2007).
952 This quotation from Clare Allan (“There seems to be some sort of agreement . . .”) and the one that follows (“Rightly or wrongly, the truth was I didn’t feel proud . . .”) come from her article “Misplaced pride,”Guardian, September 27, 2006; “According to my doctor, I’m mad . . .” appears in the comments section of that article.
953 The statement “We are a network of people living with . . .” occurs on the Icarus Project website, http://theicarusproject.net/.
954 Alison Jost discusses Mad Pride in her article “Mad pride and the medical model,” Hastings Center Report 39, no. 4 (July–August 2009).
955 This passage is based on my interview with Walter Forrest in 2008. All names in this passage are pseudonyms.
956 The anecdote about the casting difficulties involved in the production of One Flew Over the Cuckoo’s Nest occurs on page 38 of Otto F. Wahl, Media Madness: Public Images of Mental Illness (1995).
957 The survey finding that 40 percent of landlords immediately rejected mentally ill applicants for apartments is reported in Joseph M. Alisky and Kenneth A. Iczkowski, “Barriers to housing for deinstitutionalized psychiatric patients,” Hospital & Community Psychiatry 41, no. 1 (January 1990).
958 For details on the miserable employment prospects of people with schizophrenia, see Eric Q. Wu et al., “The economic burden of schizophrenia in the United States in 2002,” Journal of Clinical Psychiatry 66, no. 9 (September 2005); and David S. Salkever et al., “Measures and predictors of community-based employment and earnings of persons with schizophrenia in a multisite study,” Psychiatric Services 58, no. 3 (March 2007).
959 The effectiveness of employment as therapy was noted by Stephen Marder in Mark Moran, “Schizophrenia treatment should focus on recovery, not just symptoms,” Psychiatric News 39, no. 22 (November 19, 2004). Marder is a coauthor of Robert S. Kern et al., “Psychosocial treatments to promote functional recovery in schizophrenia,” Schizophrenia Bulletin 35, no. 2 (March 2009).
960 The quotation from James Beck (“Many people can’t tolerate working with chronic schizophrenics . . .”) occurs on page 97 of Rael Jean Isaac and Virginia C. Armat, Madness in the Streets (1990).
961 Statistics on risk of homicide by people with schizophrenia come from Cameron Wallace et al., “Serious criminal offending and mental disorder: Case linkage study,” British Journal of Psychiatry 172, no. 6 (June 1998).
962 For the 1998 study on violence in psychiatric patients, see Henry J. Steadman et al., “Violence by people discharged from acute psychiatric inpatient facilities and by others in the same neighborhoods,” Archives of General Psychiatry 55, no. 5 (May 1998).
963 Increased risk of violence to family members of people with schizophrenia is documented in Annika Nordström and Gunnar Kullgren, “Victim relations and victim gender in violent crimes committed by offenders with schizophrenia,”Social Psychiatry & Psychiatric Epidemiology 38, no. 6 (June 2003); and Annika Nordström, Lars Dahlgren, and Gunnar Kullgren, “Vict
im relations and factors triggering homicides committed by offenders with schizophrenia,” Journal of Forensic Psychiatry & Psychology 17, no. 2 (June 2006).
964 The murder of Stephanie Moulton by Deshawn Chappell is discussed in Deborah Sontag, “A schizophrenic, a slain worker, troubling questions,” New York Times, June 17, 2011; and John Oldham’s letter to the editor in response to “How budget cuts affect the mentally ill,” New York Times, June 25, 2011.
965 Quotations that appear in this account of Jared Loughner’s shooting spree and the aftermath come from the following sources: “We have a mentally unstable person in the class . . .”: Matthew Lysiak and Lukas I. Alpert, “Gabrielle Giffords shooting: Frightening, twisted shrine in Arizona killer Jared Lee Loughner’s yard,” New York Daily News, January 10, 2011. “It seemed obvious that he had mental problems” and “We don’t understand why this happened”: Leslie Eaton, Daniel Gilbert, and Ann Zimmerman, “Suspect’s downward spiral,” Wall Street Journal, January 13, 2011. Loughner “rocked back and forth,” “experienced delusions, bizarre thoughts . . .”: Mark Lacey, “After being removed from court, Loughner is ruled incompetent,” New York Times, May 25, 2011. “Mr. Loughner has a due process right . . .”: Mark Lacey, “Lawyers for defendant in Giffords shooting seem to be searching for illness,” New York Times, August 16, 2011. “Is it ethical and proper . . .”: Mark Lacey, “After being removed from court, Loughner is ruled incompetent,” New York Times, May 25, 2011.
966 Judicial authorization for continued medication for Jared Loughner is reported in “Judge allows forced medication for Arizona shooting suspect,” New York Times, August 28, 2011.
967 Loughner’s guilty plea was reported in Fernanda Santos, “Life term for gunman after guilty plea in Tucson killings,” New York Times, August 7, 2012.
968 The Los Angeles County Jail is described as the facility containing the largest number of schizophrenics in the United States in the article “Treatment not jail: A plan to rebuild community mental health,” Sacramento Bee, March 17, 1999. For a comprehensive general source on mental health and the criminal justice system, see the Council of State Governments report Criminal Justice / Mental Health Consensus Project (2002).
969 Statistics on the total number of people with schizophrenia in jail and on probation come from Paula Ditton, Mental Health and Treatment of Inmates and Probationers (1999).
970 Massachusetts statistics come from the most comprehensive available study of mental illness in incarcerated persons: Sasha Abramsky and Jamie Fellner, Ill-Equipped: U.S. Prisons and Offenders with Mental Illness (2003).
971 This passage is based on my interviews with Susan Weinreich and Bobbe Evans in 2007 and subsequent communications. Weinreich and her work have been profiled in Deanna Franklin’s article “The art of Susan Weinreich,” Clinical Psychiatry News 32, no. 8 (August 2004); and Kate Stone Lombardi’s “For an artist, life reborn after a battle with psychosis,” New York Times, June 8, 2003. Weinreich maintains a personal website at http://www.susanweinreich.com/.
972 Four Winds Hospitals website: http://www.fourwindshospital.com.
973 The four quotations about voices and delusions come from personal communications.
974 The quotation from Michael Foster Green (“When an illness is viewed as inexplicable and impenetrable . . .”) occurs on the first page of his book Schizophrenia Revealed (2001).
975 Karl Jaspers uses the phrase abyss of difference on page 219 of General Psychopathology (1963), as cited by Christopher Frith and Eve Johnstone on page 123 of Schizophrenia: A Very Short Introduction (2003).
976 The quotation from Jay Neugeboren (“For paid professionals to act as if Robert were merely a vessel of flesh . . .”) occurs on pages 136–39 of his book about Robert’s schizophrenia, Imagining Robert: My Brother, Madness, and Survival (2003). It has been condensed. In full, “For paid professionals, then, to act as if Robert were merely a vessel of flesh in which (bad) chemicals somehow rose up once upon a time and made him ill, and in which other (good) chemicals must now be poured deprives Robert, to put it most simply, of what he still possesses in abundance: his humanity. Whether or not we can ever know (or would want to know) of all the curious, sad, miraculous, bewildering, unpredictable, and mysterious ways in which the body does or does not interact with the mind, how not cry out against any and all attempts, when it comes to human beings with lives like Robert’s, to reduce their humanity to their biology? When dealing with a condition that arises from, affects, and shows itself forth in behavior, feeling, choice, and action—that brings joy, sorrow, grief, and tragedies that, daily and long-term, are distinctly human—how not pay attention and listen to the stories of these lives from those who have led them, however confusingly and crazily they are told, when it is by this very telling that some essential part of the human beings in possession of these lives is expressing itself and doing so, often, as a means of survival? Is it the very mystery of what we call madness that seems to cause us, again and again, to condemn those afflicted with this condition to some non human category of life?”
977 Andy Behrman describes his experiences with bipolar disorder in his essay “Mental health recovery: A personal perspective,” About.com, December 29, 2011.
978 The quotation from Richard C. Friedman (“The problem in psychiatric diagnosis . . .”) comes from personal communication in 2011.
979 This passage is based on my interview with Patricia, Winston, and Sam Fischer in 2008, and subsequent communications. All names in this passage are pseudonyms, except the name of David Nathan.
980 Gould Farm website: http://www.gouldfarm.org/.
VII: Disability
981 Elaine Fowler Palencia, Taking the Train: Poems (1997), pages 6–7.
982 My definitions of various disability categories come from the National Dissemination Center for Children with Disabilities’ FAQ “Severe and/or multiple disabilities,” http://www.nichcy.org/Disabilities/Specific/Pages/SevereandorMultipleDisabilities.aspx.
983 “Loving things for reasons” is a line in Richard Wilbur’s poem “Winter Spring,” which appears on page 453 of his Collected Poems, 1943–2004 (2004).
Winter Spring
A script of trees before the hill
Spells cold, with laden serifs; all the walls
Are battlemented still;
But winter spring is winnowing the air
Of chill, and crawls
Wet-sparkling on the gutters;
Everywhere
Walls wince, and there’s the steal of waters.
Now all this proud royaume
Is Veniced. Through the drift’s mined dome
One sees the rowdy rusted grass,
And we’re amazed as windows stricken bright.
This too-soon spring will pass
Perhaps tonight,
And doubtless it is dangerous to love
This somersault of seasons;
But I am weary of
The winter way of loving things for reasons.
984 For basic information on severe disabilities, I have relied upon Introduction to Persons with Severe Disabilities: Educational and Social Issues, edited by John J. J. McDonnell et al. (1995); the twenty thousand births per year figure occurs on page 75.
985 This passage is based on my interviews with David and Sara Hadden in 2004 and 2007 and subsequent communications. David Hadden is a member of the Connecticut Council on Developmental Services.
986 Hartford Association for Retarded Citizens website: http://www.harc-ct.org/.
987 For contemporary news reports about Sam Hadden’s death and the prosecution of his caregiver, see Lizbeth Hall, “Nurse’s aide faces arrest,” Hartford Courant, December 15, 2000; and Tina A. Brown, “Group home worker sentenced,” Hartford Courant, January 5, 2002.
988 Quotations from Alan O. Ross come from pages 55–56 and 157 of his book The Exceptional Child in the Family (1972). From page 156: “During the period of pregnancy the parents, and particularly the mother, deve
lop an expectation of what the child will be like. The image of the expected baby is an amalgam of perceptions of the self and of significant persons in the parent’s past, such as mother, father, spouse, siblings and previous children. Included in these expectations is the cultural stereotype of the ‘ideal child,’ the child with all the attributes of perfection which will enable him to compete successfully and to assume the roles society assigns to him and his parents’ fantasy for him. While values differ depending on the parents’ social class status, their expectations invariably include that the child will be ale to surpass, or at least attain, the parents’ level of socio-cultural accomplishment. Because of the mother’s more immediate biological role in gestation, she has a greater narcissistic investment in these expectations than does the father so that any discrepancy between the expectations and the reality presented by the child, when born, will usually have greater psychological meaning to her.”
From page 157: “Child-rearing behavior of parents is largely based on expectations derived form their image of the ‘normal’ or average child, because this is the model most widely encountered and the condition the parents themselves passed through during their childhood. When the child does not conform to this image the parents often need help in adapting their behavior to the reality—they must learn to cope with the dissonance between their image of ‘a child’ and the reality of ‘their child.’ Where the parents themselves have exceptionally high intellectual endowment this dissonance and the potential problem is reduced to such parents may in fact have a greater problem if they have a child who is ‘only’ of average intelligence.”
989 The quotation from Susan Allport (“It is not parent providing care to helpless young . . .”) occurs on page 103 of her book A Natural History of Parenting: A Naturalist Looks at Parenting in the Animal World and Ours (1997).
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