by Alice Dreger
This article mapped out: Alice Domurat Dreger, “Doubtful Sex: The Fate of the Hermaphrodite in Victorian Medicine,” Victorian Studies 38, no. 3 (Spring 1995): 335–70. I later published my first book based on this work: Alice Domurat Dreger, Hermaphrodites and the Medical Invention of Sex (Cambridge, MA: Harvard University Press, 1998).
Bo got my work: On our early meeting and collaboration, see Alice Dreger, “Cultural History and Social Activism: Scholarship, Identities, and the Intersex Rights Movement,” in Locating Medical History: The Stories and Their Meanings, ed. Frank Huisman and John Harley Warner (Baltimore: Johns Hopkins University Press, 2004): 390–409.
someday experience orgasm: I later documented and criticized this system in Alice Domurat Dreger, “‘Ambiguous Sex’—or Ambivalent Medicine? Ethical Problems in the Treatment of Intersexuality,” Hastings Center Report 28, no. 3 (1998): 24–35.
clitoris had been amputated: See Cheryl Chase, “Affronting Reason,” in Looking Queer: Body Image and Identity in Lesbian, Bisexual, Gay, and Transgender Communities, ed. Dawn Atkins (Binghamton, NY: Harrington Park Press, 1998): 205–20; Elizabeth Weil, “What If It’s (Sort of) a Boy and (Sort of) a Girl?” New York Times, Sept. 24, 2006, http://www.nytimes.com/2006/09/24/magazine/24intersexkids.html.
Bailey had suggested: J. Michael Bailey, The Man Who Would Be Queen: The Science of Gender-Bending and Transsexualism (Washington, DC: Joseph Henry Press, 2003).
account of the controversy: My article appeared as Alice Dreger, “The Controversy Surrounding The Man Who Would Be Queen: A Case History of the Politics of Science, Identity, and Sex in the Internet Age,” Archives of Sexual Behavior 37, no. 3 (June 2008): 366–421, http://link.springer.com/article/10.1007%2Fs10508-007-9301-1.
New York Times: This was covered in Benedict Carey, “Criticism of a Gender Theory, and a Scientist Under Siege,” New York Times, Aug. 21, 2007, www.nytimes.com/2007/08/21/health/psychology/21gender.html.
Galileo actively argued: This account of Galileo is based largely on the excellent biography by David Wootton, Galileo: Watcher of the Skies (New Haven, CT: Yale University Press, 2010).
“cause of the eggs hardening”: Ibid., 164.
“making human beings seem insignificant”: Ibid., 169.
Founding Fathers were science geeks: See Jonathan Lyons, The Society for Useful Knowledge: How Benjamin Franklin and Friends Brought the Enlightenment to America (New York: Bloomsbury Press, 2013).
Galileo’s middle finger: See Rachel Donadio, “A Museum Display of Galileo Has a Saintly Feel,” The New York Times, July 22, 2010, http://www.nytimes.com/2010/07/23/world/europe/23galileo.html.
“Tiphaeus ever reached”: Translation from anonymous, “The Right Kinds of Relics,” http://friendsofdarwin.com/2007/04/20070415/.
CHAPTER ONE: FUNNY LOOKING
genital appearance upsets or worries some adult: The somewhat shocking and non-evidence-based clinical pediatric approaches as they existed in the 1990s were documented in an important critical analysis by two gynecologists: Sarah Creighton and Catherine Minto, “Managing Intersex,” BMJ [British Medical Journal] 323, no. 7324 (2001): 1264–65.
Winston Churchill: Speaking of Chamberlain, Churchill said, “Poor Neville, he will come badly out of history. . . . I know, because I will write the history.” Quoted on p. 11 of Robert J. Caputi, Neville Chamberlain and Appeasement (London, England: Associated University Presses, 2000).
about one in two thousand babies: The medical literature contains no good study of the frequency of “ambiguous genitalia” (again, presumably because one would have to simply decide what would count). In order to get at an estimate, Bo Laurent (Cheryl Chase) and I asked specialists to tell us how often their teams were called to a birth because a baby’s genitals were too unclear to assign a sex, and the figure consistently came to about one in fifteen hundred to one in two thousand.
About one in three hundred babies: This would include, for example, when a girl is born with a larger than expected clitoris or when a boy is born with hypospadias, i.e., when the urinary opening is not at the tip of the penis. The frequency of hypospadias is given in one current textbook as ranging from “between 0.4 to 8.2 cases per 1000 newborn boys”; see Bernardita Troncoso and Pedro-Jose Lopez, “Hypospadias,” in Pediatric Urology Book, ed. Duncan Wilcox, Prasad Godbole, and Christopher Cooper, http://www.pediatricurologybook.com/hypospadias.html.
one in a hundred: Melanie Blackless et al., “How Sexually Dimorphic Are We? Review and Synthesis,” American Journal of Human Biology 12, no. 2 (2000): 151–66.
twenty-five and in graduate school: In 2003, at the request of two historians of medicine editing a book on our profession, I wrote about why I became an activist-historian; see Alice Dreger, “Cultural History and Social Activism: Scholarship, Identities, and the Intersex Rights Movement,” in Locating Medical History: The Stories and Their Meanings, ed. Frank Huisman and John Harley Warner (Baltimore: Johns Hopkins University Press, 2004): 390–409.
one of my dissertation directors: Because it bridged the history of medicine and science, my dissertation was codirected by Fred Churchill (historian of science) and Ann Carmichael (historian of medicine); see Alice Domurat Dreger, Doubtful Sex, Doubtful Status: Cases and Concepts of Hermaphroditism in France and Britain, 1868–1915 (PhD dissertation, Indiana University, 1995).
my three hundred primary sources: I discuss this methodology and subject more fully in the book based on my dissertation: Alice Domurat Dreger, Hermaphrodites and the Medical Invention of Sex (Cambridge, MA: Harvard University Press, 1998).
nineteenth-century Frenchwoman: See the story of Louise-Julia-Anna in Ibid., 110–13, 138.
feminine breasts with a penis: We now know that mixed external sex anatomy can arise from a large number of conditions, including congenital adrenal hyperplasia in genetic females, partial androgen insensitivity syndrome in genetic males, various tumors, and polycystic ovary syndrome, just to name a few. Not all of the causes of mixed external sex anatomy are congenital (inborn).
the other sex’s organs inside: We now understand that complete androgen insensitivity syndrome (cAIS) can cause a person to develop externally and behaviorally like a typical female, although internally she will have testes and will lack female reproductive organs (except for the vagina and vulva). It is not uncommon for this condition to go undiagnosed until late adolescence. We also now know that extreme forms of congenital adrenal hyperplasia (CAH) can cause a genetic female to develop as a fairly typical male in terms of external genitalia, so that the child would ordinarily be assumed to be male at birth, even though internally the child will have ovaries and a uterus.
manly at puberty: These would represent cases of 5-alpha-reductase deficiency, which causes a child to be born looking much like a typical female but to undergo a male-typical puberty. The protagonist of the novel Middlesex has this condition, as probably did Herculine Barbin. See Jeffrey Eugenides, Middlesex: A Novel (New York: Farrar, Straus & Giroux, 2002) and Michel Foucault, Herculine Barbin: Being the Recently Discovered Memoirs of a Nineteenth-Century French Hermaphrodite, trans. Richard McDougall (New York: Pantheon: 1980).
the doctors’ eyebrows rise: These cases are traced in Dreger, Hermaphrodites.
Age of Gonads: This history is spelled out more fully in chapter 5 of Dreger, Hermaphrodites, and in Alice Dreger, “Hermaphrodites in Love: The Truth of the Gonads,” in Science and Homosexualities, ed. Vernon A. Rosario (New York: Routledge, 1997): 46–66.
Together Wilkins and Money: This is best described in Sandra Eder, The Birth of Gender: Clinical Encounters with Hermaphroditic Children at Johns Hopkins, 1940–1956 (PhD dissertation, Johns Hopkins University, 2011). See also Sandra Eder, “From ‘Following the Push of Nature’ to ‘Restoring One’s Proper Sex’: Cortisone and Sex at Johns Hopkins’s Pediatric Endocrinology Clinic,” Endeavour 36, no. 2 (2012): 69–76.
sometimes lies
: For a collection of first-person accounts of this treatment system from people born intersex, see Alice Domurat Dreger, ed., Intersex in the Age of Ethics (Hagerstown, MD: University Publishing Group, 1999).
core group: For raw footage of intersex adults talking in the mid-1990s about what happened to them, see the videotape made by Bo Laurent/Cheryl Chase, Hermaphrodites Speak! (San Francisco: Intersex Society of North America, 1997), 30 minutes, http://www.youtube.com/watch?v=BwSOngdR7kM.
Intersex Society of North America: Bo Laurent (ISNA’s founder) has written extensively on the motivations and origins of the intersex rights movement, often under her activist name, Cheryl Chase. See, for example, Cheryl Chase, “Affronting Reason,” in Looking Queer: Image and Identity in Lesbian, Bisexual, Gay and Transgender Communities, ed. Dawn Atkins (Binghamton, NY: Harrington Park Press, 1998): 205–20; and Cheryl Chase, “Hermaphrodites with Attitude: Mapping the Emergence of Intersex Political Activism,” GLQ: A Journal of Lesbian and Gay Studies 4, no. 2 (1998): 189–211.
a few people did: In the late nineteenth century, thanks to advances in anesthesia and infection control, surgery became safer and less painful, and at this point, a small number of hermaphroditic patients inquired about surgical options. I track this in Dreger, Hermaphrodites.
while most seemed fairly unconcerned: This variation is traced in Dreger, Hermaphrodites, but was first hinted at in the article that caused Bo to contact me: Alice Domurat Dreger, “Doubtful Sex: The Fate of the Hermaphrodite in Victorian Medicine,” Victorian Studies 38, no. 3 (1995): 335–70.
Bo was to be counted: Bo’s personal history was recounted in various documentaries as well as in Elizabeth Weil, “What If It’s (Sort of) a Boy and (Sort of) a Girl?” New York Times, Sept. 24, 2006, www.nytimes.com/2006/09/24/magazine/24intersexkids.html.
Bo and I later successfully worked to get rid of it: The article where we argued for the change in nomenclature is: Alice D. Dreger, Cheryl Chase, Aron Sousa, Philip A. Gruppuso, and Joel Frader, “Changing the Nomenclature/Taxonomy for Intersex: A Scientific and Clinical Rationale,” Journal of Pediatric Endocrinology and Metabolism 18, no. 8 (2005): 729–33. Shortly thereafter, the medical establishment officially dropped all diagnoses based on the term “hermaphrodite” and adopted the umbrella term “disorders of sex development” for all intersex conditions; see Peter A. Lee et al., “Consensus Statement on Management of Intersex Disorders” (also known as the Chicago Consensus), Pediatrics 118 (2006): e488–e500. This shift was controversial among activists; see Ellen K. Feder, “Imperatives of Normality: From ‘Intersex’ to ‘Disorders of Sex Development,’” GLQ: A Journal of Lesbian and Gay Studies 15, no. 2 (2009): 225–47; Georgiann Davis, The Dubious Diagnosis: How Intersex Became a Disorder of Sex Development (New York: New York University Press, 2015).
Bo had also been born with ambiguous genitalia: See Weil, “What If . . .”
marshaled her lesbian feminist political consciousness: See Chase, “Affronting Reason,” and Chase, “Hermaphrodites with Attitude.”
took on a new name: See “Cheryl Chase (Bo Laurent),” www.isna.org/about/chase.
latest medical books: For documentation and analyses of the homophobia behind the modern medical management of intersex, see Alice Domurat Dreger, “‘Ambiguous Sex’—or Ambivalent Medicine? Ethical Problems in the Treatment of Intersexuality,” Hastings Center Report 28, no. 3 (1998): 24–35; Suzanne J. Kessler, Lessons from the Intersexed (New Brunswick, NJ: Rutgers University Press, 1998); Anne Fausto-Sterling, Sexing the Body: Gender Politics and the Construction of Sexuality (New York: Basic Books, 2000).
name in the snow: Adrienne Carmack, Lauren Notini, and Brian D. Earp, “Should Elective Surgery for Hypospadias Be Performed before an Age of Consent?,” forthcoming, includes this typical medical construction of the problem: “It is the inalienable right of every boy to be a pointer instead of a sitter by the time he starts school and to write his name legibly in the snow”; from O. S. Culp and J. W. McRoberts, “Hypospadias,” in C. E. Alken, V. Dix, and W. E. Goodwin, eds., Encyclopedia of Urology (New York: Springer-Verlag, 1969): 11307–44.
Martha Coventry: See Martha Coventry, “Finding the Words,” in Dreger, Intersex in the Age of Ethics, 71–76.
David Cameron Strachan: See David Cameron, “Caught Between: An Essay on Intersexuality,” in Dreger, Intersex in the Age of Ethics, 91–96; David Cameron, “Being Different and Fitting In,” http://oiiinternational.com/2538/fitting; Anonymous, “2008 LGBT Heroes: David Cameron Strachan, Intersex Community Volunteer Activist,” http://www.kqed.org/community/heritage/lgbt/heroes/2008.jsp.
gazing upon her in the book: For more on the medical display of intersex people, see Sarah Creighton et al., “Medical Photography: Ethics, Consent and the Intersex Patient,” BJU International 89, no. 1 (2002): 67–71; and see Alice Domurat Dreger, “Jarring Bodies: Thoughts on the Display of Unusual Anatomies,” Perspectives in Biology and Medicine 43, no. 2 (2000): 161–72.
daughter’s noticeably long clitoris: Bo and I interviewed this mother and daughter on the record in “A Mother’s Care: An Interview with ‘Sue’ and ‘Margaret,’” in Dreger, Intersex in the Age of Ethics, 83–89.
her clitoris was bigger than most: This woman provided a short essay for an anthology I collected; see Kim, “As Is,” in Dreger, Intersex in the Age of Ethics, 99–100.
she had testes inside: We alluded to this story in Dreger et al., “Changing the Nomenclature.”
a uterus inside of him: This man was a genetic female with an extreme form of congenital adrenal hyperplasia.
now she was going to die: Bo and I often showed people a surgical training video that explained that sometimes “for social reasons” surgeons “needed” to shorten clitorises on very young babies, before it was really medically advisable to attempt anesthesia; see Richard Hurwitz et al., “Surgical Reconstruction of Ambiguous Genitalia in Female Children,” (Woodbury, CT: Cine-Med, 1990).
Bruce Wilson: See Bruce E. Wilson and William G. Reiner, “Management of Intersex: A Shifting Paradigm,” in Dreger, Intersex in the Age of Ethics, 119–35.
“phall-o-meters”: The phall-o-meters were inspired by an article by Suzanne Kessler, “Meanings of Genital Variability,” Chrysalis: The Journal of Transgressive Gender Identities 2 (1997): 33–38.
fit social norms: For more on medical interpretations of “correct” phallus size, see Dreger, Hermaphrodites, 183.
extensive ethical critique: See Dreger, “‘Ambiguous Sex.’”
next book I published: See Dreger, Intersex in the Age of Ethics; this was based on a special journal issue on intersex, Journal of Clinical Ethics 9, no. 4 (Winter 1998).
I paid a university photographer: I explained the logic behind this act in Dreger, “Jarring Bodies.”
As Nature Made Him: John Colapinto, As Nature Made Him: The Boy Who Was Raised as a Girl (New York: HarperCollins, 2000).
Reimer also failed to prove Money’s theory: This story first broke in 1997, startling the medical establishment, but did not garner widespread public attention until Colapinto’s treatment. See Natalie Angier, “Sexual Identity Not Pliable After All, Report Says,” New York Times, Mar. 14, 1997, http://www.nytimes.com/1997/03/14/us/sexual-identity-not-pliable-after-all-report-says.html; this was a front-page story on an academic journal report from critics of Money; Milton Diamond and H. Keith Sigmundson, “Sex Reassignment at Birth: Long-Term Review and Clinical Implications,” Archives of Pediatric and Adolescent Medicine 151, no. 3 (1997): 298–304.
most intersex people kept the gender assignments: Gender outcomes are reviewed in Lee et al., “Consensus Statement.”
Bo said it as plainly as she could: See Cheryl Chase, “What Is the Agenda of the Intersex Patient Advocacy Movement?” Endocrinologist 13, no. 3 (2003): 240–42. See also Lee et al., “Consensus Statement,” for evidence that the clinical establishment was by 2006 recognizing Bo’s and ISN
A’s formulation of the problem: “Although clinical practice may focus on gender and genital appearance as key outcomes, stigma and experiences associated with having a DSD [disorder of sexual development] (both within and outside the medical environment) are more salient issues for many affected people” (p. e496).
Bill Reiner: For Reiner’s challenges to John Money’s established paradigm, see Wilson and Reiner, “Management of Intersex,” and see William G. Reiner and John P. Gearhart, “Discordant Sexual Identity in Some Genetic Males with Cloacal Exstrophy Assigned to Female Sex at Birth,” New England Journal of Medicine 350, no. 4 (2004): 333–41.
maximin strategy: Howard Brody and James R. Thompson, “The Maximin Strategy in Modern Obstetrics,” Journal of Family Practice 12, no. 6 (1981): 977–86.
resulted in more net harm: For a synopsis of this ongoing problem in obstetrics, see Aron C. Sousa and Alice Dreger, “The Difference between Science and Technology in Birth,” JAMA Virtual Mentor 15, no. 9 (2013): 786–90.
the founder of pediatric endocrinology: See Eder, The Birth of Gender.
Money had known: See Colapinto, As Nature Made Him.
Articles and op-eds: See, for example, Creighton and Minto, “Managing Intersex”; Wilson and Reiner, “Management of Intersex” (originally published in Journal of Clinical Ethics 9, no. 4 [1998]: 360–69); Kenneth Kipnis and Milton Diamond, “Pediatric Ethics and the Surgical Assignment of Sex,” Journal of Clinical Ethics 9, no. 4 (1998): 398–410 (republished in Dreger, Intersex in the Age of Ethics, 173–193).
conjoined twins: This is explained in Alice Dreger, One of Us: Conjoined Twins and the Future of Normal (Cambridge, MA: Harvard University Press, 2004). See also Alice Dreger, “The Sex Lives of Conjoined Twins,” The Atlantic (Oct. 25, 2012), www.theatlantic.com/health/archive/2012/10/the-sex-lives-of-conjoined-twins/264095.