Imperatives of normality from "intersex" to "disorders of sex development"

GLQ

Volumn 15, Issue 2, 2009, Pages 225-247

  Feder, Ellen K ^a  

^a NONE

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EID: 67349137540     PISSN: 10642684     EISSN: 15279375     Source Type: Journal    
DOI: 10.1215/10642684-2008-135     Document Type: Article

References (63)

1. Despite its prevalence it is important to note that intersex was never formally adopted by physicians as a diagnostic term. On the change in nomenclature, see I. A. Hughes et al., "Consensus Statement on Management of Intersex Disorders," Archives of Disease in Childhood 91 (2006): 554 - 63. For a discussion of the history of the development of the nomenclature, see Ellen K. Feder and Katrina A. Karkazis, "What's in a Name? The Controversy over 'Disorders of Sex Development,' " Hastings Center Report 38, no. 5 (2008): 33 - 36.
2. See, for example, Marie-Noëlle Baecheler, letter to the editor, Archives of Disease in Childhood (2006), adc.bmj.com/cgi/eletters/91/7/ 554#2562; David Cameron, letter to the editor, Archives of Disease in Childhood (2006), c.bmj.com/cgi/eletters/91/7/554#2479; and Milton Diamond and Hazel G. Beh, letter to the editor, Archives of Disease in Childhood (2006), adc.bmj.com/cgi/eletters/91/7/554#2460. See also the documents at the site of Organisation Intersex International, www .intersexualite.org/Disorders- of-Sex-Development.html (accessed July 29, 2008).
3. Corrective genital surgeries are not entirely unique in this respect. Appearancealtering surgeries intended to enhance psychosocial health rather than physical function include limb-lengthening surgeries for children with achondroplasia, as well as secondary surgeries to improve appearance in children with cleft lip and palate. For discussion of the ethical problems these surgeries provoke, see Erik Parens, ed., Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality (Baltimore: Johns Hopkins University Press, 2006).
4. Diamond and Beh, letter to the editor.
5. For example, the term intersexual is used by Anne Fausto-Sterling, Sexing the Body: Gender Politics and the Construction of Sexuality (New York: Basic, 2000), 31;
6. and Sharon E. Preves, Intersex and Identity: The Contested Self (New Brunswick: Rutgers University Press, 2003), 97.
7. This is a particular problem for the majority of individuals with intersex conditions assigned female, who may be reluctant to seek gynecological care and who may be especially vulnerable to illnesses typical of aging women, including osteoporosis. See, for example, Katrina A. Karkazis, Fixing Sex: Intersex, Medical Authority, and Lived Experience (Durham, NC: Duke University Press, 2008), 228.
8. Jennifer Terry, "Anxious Slippages between 'Us' and 'Them': A Brief History of the Scientific Search for Homosexual Bodies," in Deviant Bodies: Critical Perspectives on Difference in Science and Popular Culture, ed. Jennifer Terry and Jacqueline Urla (Bloomington: Indiana University Press, 1995), 135. See also Michel Foucault, An Introduction, vol. 1 of The History of Sexuality, trans. Robert Hurley (New York: Vintage, 1990), 43, 101.
9. Michel Foucault, Abnormal: Lectures at the Collège de France, 1974 - 1975, ed. Valerio Marchetti and Antonella Salomoni, trans. Graham Burchell (New York: Picador, 2003), 67 - 68.
10. Terry, "Anxious Slippages," 135.
11. Fausto-Sterling, Sexing the Body, 72. See also Monica J. Casper and Courtney Muse, "Genital Fixations," American Sexuality Magazine, March 16, 2006, www.nsrc.sfsu .edu/MagArticle.cfm?Article= 595&PageID=0; and Alice Domurat Dreger, Hermaphrodites and the Medical Invention of Sex (Cambridge, MA: Harvard University Press, 1998), 8 - 9.
12. In a 2004 survey of pediatric endocrinologists and urologists, a startling proportion (42 percent and 57 percent, respectively) reported that projected sexual orientation of infants informs decisions on gender assignment (D. E. Sandburg et al., "Intersexuality: A Survey of Clinical Practice," Pediatric Research 55, no. 4 (2004): abstract 869; cited in Karkazis, Fixing Sex, 142); on parental expectations, see Suzanne J. Kessler, Lessons from the Intersexed (New Brunswick, NJ: Rutgers University Press, 1998), 26; and Peter Hegarty and Cheryl Chase, "Intersex Activism, Feminism, and Psychology: Opening a Dialogue on Theory, Research, and Practice," Feminism and Psychology 10 (2000): 125 - 26.
13. Ronald Bayer, Homosexuality and American Psychiatry: The Politics of Diagnosis (Princeton: Princeton University Press, 1987).
14. Cheryl Chase, letter to the editor, Sciences, July - August 1993, 3;
15. Preves, Intersex and Identity, 88. As Karkazis attests, gay activism and queer theory have been by no means the only influences here; feminist as well as health care and disability activism were also important (Fixing Sex, 246), but I would suggest a certain priority in the influence of the gay rights movement for the reasons that I have detailed here.
16. Hermaphrodites Speak! dir. Cheryl Chase, Intersex Society of North America, 1996. Morgan Holmes's injunction to "seize the name 'intersexual' as our own and take away its pathologizing power" is the most direct statement of this point ("Queer Cut Bodies," in Queer Frontiers: Millennial Geographies, Genders, and Generations, ed. Joseph A. Boone et al. [Madison: University of Wisconsin Press, 2000], 106). Other moving and provocative examples of this sort of "coming out" and reclamation of "intersex" can be seen in the first-person narratives in the collection Intersex in the Age of Ethics, ed. Alice Domurat Dreger (Hagerstown, MD: University Publishing Group, 1999).
17. This change is "radical" in the sense that it challenges standard practice in nearly every respect, but we must always recall that this change asks only that physicians act in accordance with established principles of evidence-based medicine, as well as in conformity with the bioethical standards supposed to guide that practice.
18. quot;Gender policing" includes the treatment of young children for gender identity disorder and teenagers who have been subjected to institutionalization. For an extended discussion, see Ellen K. Feder, Family Bonds: Genealogies of Race and Gender (New York: Oxford University Press, 2007), 45 - 60.
19. In this respect, the treatment of those with intersex conditions may be compared with the medical treatment of women through much of the twentieth century, whose difference from men was disregarded in most health research, with the result that medical care provided to women was often inappropriate. For an extended discussion, see Sue V. Rosser, Women's Health - Missing from U.S. Medicine (Bloomington: Indiana University Press, 1994).
20. There is certainly a broad range of individuals diagnosed with intersex conditions who might seek hormone replacement. For some, hormone therapy might not be understood precisely as a "choice," given the serious risks of osteoporosis for those without gonads; others might elect hormone replacement because the function of their gonads is at odds with their gender of assignment. In the latter case there is significant overlap with those who are transgendered. For a discussion of the issues involved in medicalizing these conditions, see Judith Butler, "Undiagnosing Gender," in Undoing Gender (New York: Routledge, 2004), 75 - 101.
21. Jonathan Ned Katz, The Invention of Heterosexuality (New York: Dutton, 1995); Ian Hacking, "Making Up People," in Reconstructing Individualism: Autonomy, Individuality, and the Self in Western Thought, ed. Thomas C. Heller et al. (Stanford: Stanford University Press, 1986), 222 - 36. It is not the case, obviously, that homosexual practices were unrecognized before this time; Katz's claim is instead that the category of "the homosexual" (together with "the heterosexual") transformed the meaning of sexual desire and divided people along the axis normal/abnormal that the homo-/heterosexual terms consolidated and naturalized.
22. For a provocative argument on the narrative figuration of intersex, see Iain Morland, "Narrating Intersex: On the Ethical Critique of the Medical Management of Intersexuality, 1985 - 2005" (PhD diss., University of London, 2005).
23. Arlene B. Baratz, letter to the editor, Archives of Disease in Childhood (2006), adc .bmj.com/cgi/eletters/91/7/554#2590; Alice Domurat Dreger et al., "Changing the Nomenclature/Taxonomy for Intersex: A Scientific and Clinical Rationale," Journal of Pediatric Endocrinology and Metabolism 18 (2005): 732; and Karkazis, Fixing Sex, 261.
24. Hacking, "Making Up People," 227.
25. Sheila Rothman, Living in the Shadows of Death: Tuberculosis and the Social Experience of Illness in American History (Baltimore: Johns Hopkins University Press, 1994), 181. David Barnes's history of tuberculosis in France is also illustrative here. From the early nineteenth century, he recounts, "consumption or phthisis was [understood as] an individual, inscrutable, and all but random killer, probably hereditary and somehow related to passion. In the 1830s, under the July Monarchy, the disease was for the first time seen as socially discriminating, choosing its victims from certain professions and from poor neighborhoods. Beginning in the 1840s, being a consumptive woman signified in certain circles heightened sensibility and emotion as well as the redemptive power of suffering. From the late 1860s through the early 1880s, as the Third Republic established itself, the disease was possibly contagious. Around 1900, tuberculosis was a national scourge, highly contagious, lurking around every corner and symptomatic of moral decay" (The Making of a Social Disease: Tuberculosis in Nineteenth-Century France [Berkeley: University of California Press, 1995], 13). In the United States in the early twentieth century the spread of tuberculosis was associated with vagrancy, poverty, and immigration (Rothman, Living in the Shadows of Death, 191). Of the last, Alan Kraut recounts that Eastern European Jewish immigrants at midcentury were despised by racists as "tuberculous" both for their supposed susceptibility to tuberculosis and for their ability to withstand the disease (Silent Travelers: Germs, Genes, and the Immigrant Menace [Baltimore: Johns Hopkins University Press, 1994], 155 - 56).
26. Even as the preservation of privacy is taken to be paramount in medical management of intersex, we should not forget the many stories of those who have been, and continue to be, subjected to photographic sessions for purposes of research, as well as repeated exams by medical residents for educational purposes. It appears that the privacy of the family, rather than the individual patient, is at issue. It may also be that the public is being protected, of course, from the "revelation" that sex is not simply binary, but this is far from an explicit rationale for secrecy. See, for example, Kessler, Lessons from the Intersexed, 32.
27. Hughes et al., "Consensus Statement," 557.
28. As is now well known, this theory was advanced by John Money and his associates, among them Joan and John Hampson, and later Anke Ehrhardt. See, for example, Joan G. Hampson, John Money, and John L. Hampson, "Hermaphrodism [sic]: Recommendations concerning Case Management," Journal of Clinical Endocrinology and Metabolism 16 (1956): 547 - 56; and John Money and Anke A. Ehrhardt, Man and Woman, Boy and Girl: The Differentiation and Dimorphism of Gender Identity from Conception to Maturity (Baltimore: Johns Hopkins University Press, 1972).
29. See Milton Diamond and H. Keith Sigmundson, "Sex Reassignment at Birth: Long- Term Review and Clinical Implications," Archives of Pediatric and Adolescent Medicine 151 (1997): 298 - 304, which revealed what would come to be known in John Colapinto's words as "The True Story of John/Joan" (Rolling Stone, December 11, 1997, 54 - 73, 92 - 97). See also research by William Reiner, such as "Gender Identity and Sex-of-Rearing in Children with Disorders of Sexual Differentiation," Journal of Pediatric Endocrinology and Metabolism 18 (2005): 549 - 53. Consonant with Reiner's research the consensus statement does urge greater caution in matters of sex reassignment, which has typically entailed sex reassignment of 46XY boys born with micropenis or severe hypospadias.
30. Lennard J. Davis, Enforcing Normalcy: Disability, Deafness, and the Body (New York: Verso, 1995), 23.
31. Michel Foucault, "The Social Extension of the Norm," in Foucault Live: Collected Interviews, 1961 - 1984, ed. Silvère Lotringer, trans. Lysa Hochroth and John Johnston, 2nd ed. (New York: Semiotext(e), 1996), 197.
32. Michel Foucault, The Birth of the Clinic: An Archaeology of Medical Perception, trans. A. M. Sheridan Smith (New York: Vintage, 1994), 34. See also Jacques Jouanna, Hippocrates, trans. Malcolm B. DeBevoise (Baltimore: Johns Hopkins University Press, 1998), 326, 331; and G. E. R. Lloyd, ed., Hippocratic Writings, trans. J. Chadwick (New York: Penguin, 1983), 262.
33. Davis makes more explicit than Foucault here the implication of eugenic medicine, drawing a direct line between its notorious history and the birth of the norm (Enforcing Normalcy, 24 - 38).
34. Dreger et al., "Changing the Nomenclature," 730, 732 - 33.
35. Dreger, Hermaphrodites, 35 - 40.
36. Michel Foucault, Discipline and Punish: The Birth of the Prison, trans. Alan Sheridan (New York: Vintage, 1979), 182 - 83.
37. Preves, Intersex and Identity, 31.
38. Karkazis, Fixing Sex, 221.
39. Foucault, Discipline and Punish, 179.
40. Foucault, Introduction, 95.
41. Foucault, Discipline and Punish, 184; Kessler, Lessons from the Intersexed, 40 - 44.
42. See, for example, Melissa Hendricks, "Is It a Boy or a Girl?" Johns Hopkins Magazine, November 1993, 12. The refrain "what about the locker room?" unfortunately retains currency. Dreger's response to such queries is apt here: "Yes, what about the locker room? If so many people feel trepidation around it, why don't we fix the locker room? There are ways to signal to children that they are not the problems and, [surgical] normalization technologies are not the way" ("When Medicine Goes Too Far in the Pursuit of Normality," New York Times, July 28, 1998).
43. One such critique is Elizabeth Reis's "Divergence or Disorder? The Politics of Naming Intersex," Perspectives in Biology and Medicine 50 (2007): 535 - 43.
44. Foucault, Discipline and Punish, 194.
45. Foucault, Introduction, 101; emphasis added.
46. Hacking, "Making Up People," 229.
47. A nuanced account of this point may be found in Ladelle McWhorter's Foucauldian account of her experience in Bodies and Pleasures: Foucault and the Politics of Sexual Normalization (Bloomington: Indiana University Press, 1999).
48. Cheryl Chase, letter to the editor, Archives of Disease in Childhood (2006), adc.bmj .com/cgi/eletters/91/7/554#2546.
49. Foucault, Introduction, 93.
50. See, for example, Diamond and Beh, letter to the editor; and Reis, "Divergence or Disorder?"
51. Foucault, Introduction, 93, 95.
52. See, for example, Edgardo J. Menvielle, letter to the editor, Journal of the American Academy of Child and Adolescent Psychiatry 37 (1998): 243 - 44; and Shannon Minter, "Diagnosis and Treatment of Gender Identity Disorder in Children," in Sissies and Tomboys, ed. Matthew Rottnek (New York: New York University Press, 1999), 9 - 13.
53. Foucault, Introduction, 155 - 56.
54. Anita Natarajan, "Medical Ethics and Truth-Telling in the Case of Androgen Insensitivity Syndrome," Canadian Medical Association Journal 154 (1996): 568 - 70.
55. See the invited response to Joel Frader et al., "Health Care Professionals and Intersex Conditions," Archives of Pediatric and Adolescent Medicine 158 (2004): 426 - 28, by Erica Eugster, "Reality vs Recommendations in the Care of Infants with Intersex Conditions," Archives of Pediatric and Adolescent Medicine 158 (2004): 428 - 29.
56. The remarkable lack of evidence supporting successful outcomes of cosmetic genital surgeries and sex reassignment means that intersex surgeries are experimental procedures; in this respect these treatments take their place in a notorious history of medical experiments in the United States, including the sterilization of children diagnosed with mental illness (reviewed by the U.S. Supreme Court in Buck v. Bell, 274 US 200 [1927]) and the Tuskegee syphilis study from 1932 to 1972 (James H. Jones, Bad Blood: The Tuskegee Syphilis Experiment, rev. ed. [New York: Free Press, 1993]).
57. Medicine has certainly not been consistent in its use of nomenclature. Patricia A. Ross notes that any physical problem was long cast as "disease," and "disorder" was introduced to distinguish physical from psychiatric conditions ("Sorting Out the Concept Disorder," Theoretical Medicine and Bioethics 26 [2005]: 136n2). Disorder has been employed far more widely than Ross suggests, however. A recent edition of a textbook for medical students and pediatricians uses the term to describe all manner of conditions that warrant medical care. Chapter headings include "Allergic Disorders," "Musculoskeletal Disorders," "Disorders of the Nervous System," and so on (Lucy M. Osborn et al., Pediatrics [Philadelphia: Elsevier Mosby, 2004]).
58. Cressida J. Heyes, Self-Transformations: Foucault, Ethics, and Normalized Bodies (New York: Oxford University Press, 2007), 64.
59. Foucault, Discipline and Punish, 136; see also 138.
60. Heyes, Self-Transformations, 77.
61. The concept of "human flourishing" is most closely associated in Western philosophy with Aristotle's treatment of eudaimonia, frequently translated as "happiness." I have found the concept helpful in this context precisely because the philosophical provenance of the term connotes for contemporary thinkers a concept of flourishing that is historically specific, emerging from a particular cultural context.
62. Alice Domurat Dreger, "What to Expect When You Have the Child You Weren't Expecting," in Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality, ed. Erik Parens (Baltimore: Johns Hopkins University Press, 2006), 253 - 66.
63. Heyes, Self-Transformations, 7.