The arrest of a Michigan emergency room physician accused of performing illegal genital surgery on children hit my Facebook feed at 2 p.m. Hours later, it had generated hundreds of horrified comments by doctors condemning the practice of female genital mutilation (FGM), viewed by many in this country as a human rights violation.
I sympathized with the outrage felt by my fellow medical practitioners, even as I was aware of the complex cultural significance of FGM to some. The notion of performing an irreversible procedure on a child—one that will likely render her incapable of achieving sexual pleasure in the future —is utterly abhorrent to me, as an insult on the body autonomy of a minor who is, by definition, incapable of giving informed consent.
Yet this is what some surgeons in the U.S. do every year. And so far, law enforcement has turned a blind eye.
There is an old saying that 50 percent of what you learn in medical school is going to be wrong by the time you actually practice; you just don’t know which 50 percent. Nowhere is this more true than in the treatment of people born with intersex traits—biological conditions where people have sex characteristics that fall outside of traditional conceptions of “male” or “female” bodies.
Since the 1950s, some surgeons have tried to “fix” intersex, projecting their assumptions about sex onto the bodies of children to justify surgical interventions that were often harmful and medically unnecessary.
Eight years ago, I did irrevocable damage to the first intersex person I ever met, taking out the gonads of a 17-year-old girl who found out after she never got her period that she had XY chromosomes, with internal testicles instead of ovaries and a uterus.
Now I would do things differently and not rush her into an elective surgery that rendered her menopausal and dependent upon a lifetime of hormonal manipulation. Yet this is poor consolation, because the chilling fact is that I may know but many of my colleagues do not.
Every surgeon knows that the complications of surgery can be devastating, but for decades intersex patients’ stories went unheard. I know intersex women who have never experienced orgasm because clitoral surgery destroyed their sensation; men who underwent a dozen penile surgeries before they even hit puberty; people who had false vaginas created that scarred and led to a lifetime of pain during intercourse.
While some would argue that surgical practice has improved in the past decades, the fact remains that few attempts have been made to assess the long-term outcomes of these interventions.
The psychological damage caused by intervention is just as staggering, as evidenced by generations of intersex adults dealing with post-traumatic stress disorder, problems with intimacy and severe depression. Some were even surgically assigned a gender at birth, only to grow up identifying with the opposite gender.
Compounding the stigma and shame was the common practice of telling patients that they are rare and isolated cases and would never meet another person like them.
In 2015, when I published None of the Above, my novel featuring an intersex main character inspired by my first patient, intersex people were largely invisible, even though up to 2 percent of people can have intersex traits.
However, in the past two years, as I’ve traveled to high schools, universities and book festivals from New York to Tennessee to San Francisco, I’ve seen a notable increase in intersex awareness, largely due to the nonprofit InterACT: Advocates for Intersex Youth, whose mission is to empower intersex voices to reverse years of erasure.
Under the umbrella of InterACT’s remarkable efforts, I spoke last year at the Society for Pediatric Urology to discuss the role of clinicians in patient advocacy. Joining me in the spotlight were two intersex women and one parent. It was the largest group of pediatric urologists to ever hear their intersex patients’ stories in a scientific setting.
In the following two months, InterACT was contacted by two separate physicians who opted to defer surgery on an intersex child as a result of seeing our presentation. In doing so, these stalwart doctors proved that old chestnut that we all learned from watching G.I. Joe: knowing is half the battle.
Intersex rights are human rights. Only we can help spread that awareness.
I.W. Gregorio is a surgeon and author.
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