health lab When the amniocentesis came back, “Mr. and
Mrs. Jones” were ecstatic, they were having a girl. Over the next few months, came the inevitable influx of pink-infused baby items, ladybug clothing and princess books... Immediately after Mrs. Jones’s delivery however,
as her doctors cleaned off the newborn baby, there were worried whispers instead of hearty congratu- lations. It turns out, the doctors weren’t exactly sure that the Jones’s had a daughter after all. That’s when I was paged as the resident on call
for pediatric urology. Several days later, it was confirmed that “Baby Jones” had a rare intersex condition called SRY translocation, in which a baby’s X chromosome contained the portion of the Y chromosome that triggers the male organ pathway.
Intersex—also known as difference of sex development (or DSD)—is an umbrella term that refers to a number of biological states in which a person’s body doesn’t fall neatly into our concept of male or female. Surprisingly common, intersex traits affect about one in every 2000 newborns. Some children are identified as intersex at birth, when doctors find so-called “ambiguous genitalia” during the initial exam. Others aren’t discovered until adolescence or even early adulthood, when a teenage girl fails to get her period, or discovers that she has a hernia that actually contains testes. In the end, Mr. and Mrs. Jones were lucky. Their
child had an condition for which gender assignment was obvious. They left the hospital with both a perfectly healthy baby boy and a new appreciation about the fact that chromosomes do not always cor- relate with biological sex. Sometimes however, the path isn’t so cut and dry, and parents are pushed into signing their children up for irreversible surgeries. To be perfectly clear, because many medical pro- fessionals still don’t know the difference, intersex is not the same as transgender. Though an intersex individual, can consider themselves transgender if they are assigned a gender at birth that doesn’t conform to their gender identity. Such is the case of M.C., an intersex child in South Carolina who was surgically assigned to a female gender, only to later identify as a male. While transgender people frequently seek out
surgeries so their physical bodies match their gender identity, people who are intersex, often have to protect themselves from well-meaning physicians who try to “normalize” their gonads and genitals. Often doing so, without their consent,
This Is Intersex
performing irreversible surgery in infancy and without providing adequate information to parents. Surgery that can sometimes lead to chronic pain, sexual dysfunction and psychological distress. Indeed, the surgery that I performed on a seventeen-year-old, intersex girl, is the source of my greatest regret as a physician and what inspired me to write my debut novel,None of the Above. For too long, the stories of intersex people have remained untold, leading to invisibility, stigma and shame. This lack of awareness, often means that parents of intersex newborns make decisions on medical intervention from a position of weakness, vulnerable to the influence of surgeons, who may or may not, have outdated views on management. Even as more and more intersex adults come forward to reveal the devastating complications of surgery performed as children without their consent, the U.S. medical profession has been very slow to change their practices. To this day, the Society for Pediatric Urology still has not issued guidelines to suggest surgeries may be deferred, until children can give informed consent. Intersex genital mutilation has been condemned by the United Nations, Amnesty International and the World Health Organization and has been banned in
SPOILER ALERT: IT DOESN’T NEED TO BE FIXED! by i.w. gregorio
Malta and Portugal. A game-changing California bill, would allow residents the option for a third gender. I can’t help wondering if this could pave the way for American parents to realize that the gender assignment of their child doesn’t have to be a binary choice, empowering them to avoid elective and irreversible surgeries. The true intersex revolution won’t happen until we redefine our definitions of normal. What if, instead of growing up knowing that “women are XX” and “men are XY,” we are taught the actual truth: That sex and gender are a spectrum and that “most women are XX” and “most men are XY?” As parents and as human beings, we have to accept that people are born with myriad bodies and senses of identity.
Just because something is different does not mean that it is broken. Let’s stop fixing intersex.
I. W. Gregorio is a practicing surgeon by day, masked avenging YA writer by night. After getting her MD, she did her residency at Stanford, where she met the intersex patient who inspired her debut novel,None of the Above (Balzer + Bray / HarperCollins). For more information, check out her website at
iwgregorio.com.
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RAGE monthly | JUNE 2017
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