I'm intersex, and I didn't meet another intersex person until I was 24 years old. Not long after that, while interning for interACT, a group that advocates for intersex youth, I consulted with MTV on an intersex character for the show "Faking It" and later appeared in a public-service announcement for the channel — effectively coming out to the whole world. In my current position as the youth coordinator for interACT, I advocate for the rights of intersex people to control decisions about their bodies.
When I talk about what it means to be intersex, I mostly tell stories. I tell my own story — I was born with internal testes and what doctors refer to as androgen insensitivity syndrome (AIS) — and I tell the stories of other intersex people who have been physically and psychologically harmed by outdated, binary ideas about sex and gender. Unfortunately, some doctors in the medical profession prioritize those antiquated notions over care, which includes performing medically unnecessary surgeries without a person's knowledge or full, informed consent.
The harm is real. Many intersex people I know have had their gonads removed by doctors who incorrectly told them or their parents there was a high cancer risk without also explaining the full repercussions of the procedure (taking synthetic hormones for the rest of their lives and losing the benefits of having natural hormones). I have friends whose parents were coerced into agreeing to surgeries that didn't go as promised and now must cope with incontinence, scar tissue, lack of sensation, painful sexual experiences, and more.
When I present to students, doctors and even the general public, my main point is that intersex people don't need to be fixed. There's nothing wrong with us, and we don't need to be operated on in order to lead happy and healthy lives.
Medically unnecessary surgeries performed without consent are a violation of a person's human rights — even when they are done at the request of well-meaning doctors or parents who think they have a child's best interests at heart. But surgeries are not the only ways in which intersex people are hurt by medical practice.
A large part of the harm intersex people suffer comes from the sense of shame instilled in us as part of our so-called "care." My doctors — and my parents — told me I should keep my intersex traits a secret. I now understand they were trying to protect me from ridicule or worse, but, instead of being directed towards a support network or therapist, I spent my childhood years thinking there was something so terribly wrong with me that it had to be kept a secret.
When I give presentations, medical students are typically more open to criticism than the doctors they are about to become. But even doctors can change their views. Every year, The AIS-DSD Support Group holds a conference in partnership with a hospital to provide continuing medical education credits to physicians. After one of those CMEs, I was invited to speak on a panel at the annual Society of Pediatric Urologists conference this past May. Since then, several doctors have reached out or directed their patients' families to AIS-DSD or interACT because they are now uncomfortable performing surgeries that they previously wouldn't have given a second thought.
Twenty years ago today, a group of brave intersex people gathered in Boston to protest the annual meeting of the American Academy of Pediatrics. It was the first protest of its kind in the U.S. — a day that is now commemorated around the globe as Intersex Awareness Day (IAD).
I'll be spending my IAD speaking to an undergraduate sociology course in Salt Lake City. On Monday, I shared my story at a bookstore with I.W. Gregoria, author of "None of the Above," a young adult novel about an intersex character. And yesterday I spoke to urology Grand Rounds at the University of California, Davis. You get the idea. Every day is Intersex Awareness Day for me. That's what being an advocate is all about.
Salt Lake City resident Emily Quinn is the youth coordinator for interACT and is pursuing her master's degree in strategic communication at Westminster College.