June, 1967. A little boy, whose penis had been mutilated beyond repair as a result of a botched circumcision, lies on an operating table at Johns Hopkins University Hospital. The surgeons will remove his testes, and from that point on, the little boy will no longer be a boy. He will be Brenda (known to the public as “Joan”), a boy raised as a girl, and held up as proof of the malleability of gender. Years later, the child’s doctor says, “The child’s behavior is so clearly that of an active little girl” – and the case is hailed as an unwavering success.
This story, as many of you probably know, does not end well. The doctor was John Money, and the child was David Reimer. As John Colapinto reported in his bestselling book, As Nature Made Him: The Boy Who Was Raised as a Girl, the case was anything but an unwavering success. He never identified as a girl, and he actively resisted wearing dresses and playing with girls’ toys. By age 14, he was openly identifying as a male, and at age 25, he went through a reverse sex reassignment process. Thirteen years later, at the age of 38, Reimer committed suicide – and since then, even though Reimer wasn’t intersex, his case has been used as a cautionary tale for the intersex community.
April, 2006. A 16-month-old baby, a ward of the state, lies on an operating table at the Medical University of South Carolina. This child, whose phallus is not within the “medically acceptable” range, is not easily labeled as either male or female. As a result, the child will undergo a phallectomy, and from that point forward will be raised as a girl. Sounds eerily familiar, doesn’t it?
The outcome? M.C., who is now eight years old, clearly identifies as a boy. He’s been asking his parents, “When will I grow a penis?” And his parents have to find a way to tell him that he was the victim of an unnecessary surgery that may have caused sterilization and reduction (if not outright elimination) of normal sexual functioning. The doctors chose the wrong sex – and M.C. will have to bear the consequences of that choice for the rest of his life. Thirty-nine years after David Reimer’s ordeal, and here we are again.
But this case has the possibility of a better ending. Last week, a lawsuit was filed on behalf of M.C. and his adoptive parents by Advocates for Informed Choice (AIC), The Southern Poverty Law Center (SPLC), and pro bono counsel for the private law firms of Janet, Jenner & Suggs and Steptoe & Johnson LLP. The lawsuit alleges that: (1) M.C. was subjected to a medically unnecessary surgery without fully determining whether the procedure was in M.C.’s best interest, and (2) the doctors failed to obtain adequate informed consent before proceeding. Specifically, M.C.’s guardians were not warned about the significant risks of the surgery, they were not presented with the option of not having surgery at all, and they were not told that the surgery itself was cosmetic, but medically unnecessary. “His bodily integrity was endangered,” said M.C.’s father, Mark Crawford, in a BBC World Service interview.
These are serious medical allegations. Yet these practices, referred to as the “concealment model,” have been going on ever since the days of David Reimer and John Money. In fact, the concealment model (also sometimes referred to as the “optimal gender” model) has been the standard operating procedure (literally and figuratively) for intersex babies and children. It involves choosing a gender at birth, “normalizing” the infant’s genitalia so its body matches its gender assignment, and raising the child as a “normal” girl or “normal” boy, with no reference to the intersex condition whatsoever. Pretend as if the intersex condition never happened, and move forward from there.
In the same BBC World Service segment cited above, the interviewer asked, in a heartfelt tone of voice, “Do you believe this decision [to perform surgery on M.C.] could have been made in good faith?”
No, I don’t believe that this decision could have been made in good faith. If you consider the following time frame, I think you’ll see why:
July 1993: The Intersex Society of North America (ISNA) is formed, which is the first major group to advocate for the human rights of intersex people.
February 2000: David Reimer’s story is made public in As Nature Made Him: The Boy Who Was Raised as a Girl.
May 2005: The San Francisco Human Rights Commission releases a report titled, “A Human Rights Investigation into the Medical ‘Normalization’ of Intersex People,” which among other things, says this about genital surgeries on intersex infants:
[T]he medical community . . . [tries] to make the problem ‘disappear’ with a scalpel and the withholding of information. . . .'[N]ormalizing’ interventions are inherent human rights abuses and deprive persons of the right to express their own identity.
February 2006: The National Institute of Health releases their Strategic Plan for Pediatric Urology, which covers, among other things, the clinical and medical management of “congenital anomalies of sex differentiation” (otherwise known as intersex conditions). Prior to listing a set of clinical and research recommendations, the report provides a patient-centered perspective of the damaging effects of the concealment model (which, to me, sounds chillingly similar to M.C.’s experience):
They object to the fact that they were either not informed or were misinformed about their condition and had difficulty obtaining accurate information about their condition and treatment. They feel stigmatized and shamed by the secrecy surrounding their condition and its management. Many also attribute poor adult sexual function to damaging genital surgery and repeated and insensitive genital examinations, both performed without their consent.
April 2006: M.C. is subjected to medically unnecessary surgery.
August 2006: The highly-regarded journal Pediatrics publishes an article titled, “Consensus Statement on Management of Intersex Disorders.” Citing 90 references (all of which, by the way, were published before April of 2006, when M.C.’s surgery took place), the report presents a detailed set of best practices for treating people with intersex conditions. These recommendations include, but are not limited to, a much more cautious approach to surgery, emphasizing the functional outcome rather than mere cosmetic appearance. The publication of this article – in the flagship journal of the American Academy of Pediatrics – was seen as a major victory for the intersex community.
May 2013: Medically unnecessary surgeries continue to be performed on intersex children. Frequently.
If this had happened twenty, thirty, forty years ago, one could argue that the decision to perform surgery was made “in good faith.” But considering that the medical community was engaging in broad-based conversations about intersex conditions right when M.C.’s surgery took place, that argument doesn’t hold much water – and frankly, it exhibits flagrant disregard of the existing medical recommendations. This lawsuit won’t reverse the harm that M.C. was subjected to. But it might do what the NIH Strategic Plan and the AAP’s Consensus Statement have been unable to do – prevent this from ever happening to another child. Anne Tamar-Mattis, who is the executive director for AIC, was quoted as saying: “This case is about ensuring the safety of all children who do not have a voice.”
How sad that it takes a lawsuit in order for that to happen. If only it could have helped David Reimer, and all the other individuals who had surgery when it wasn’t needed.
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If you would like to learn more about this case, or if you’d like to find out how to get involved and show your support, please visit the Advocates for Informed Choice website at http://aiclegal.org.