Intersex people have been around just as long as queer people and transgender people (aka, forever), but the community is still shrouded in mystery — even among those of us who identify as LGBTQIA+. The reason (or at least part of it), sadly, is that doctors still think being intersex is a disorder that needs to be “fixed,” argues intersex activist Alicia Weigel, director of strategy and communications at Deeds Not Words.
Often, when a baby is born intersex — meaning that they were born with sex characteristics (including genitals, gonads, and chromosome patterns) that don’t fall within strict definitions of male or female — doctors recommend “normalising” surgeries to make their genitals look more like how society expects men and women to look, or to remove internal gonads like testes. These surgeries are almost always performed before a person can actually consent, and have been deemed so physically and mentally harmful that some medical associations have begun calling for a ban. A 2013 report from the United Nations claims that these surgeries can leave intersex people with “permanent, irreversible infertility and severe mental suffering.”
Yet, according to The Human Rights Watch and intersex youth advocacy network interACT, these surgical interventions aren’t medically necessary — there’s no evidence that atypical gonads, genitals, or chromosomes are dangerous to a person’s health — and the organisations released a joint report calling normalising surgeries a ”surgical ‘solution’ to a social problem.” Weigel agrees. She tells Refinery29 that doctors sometimes truly believe they’re helping intersex children by making them look more “normal” in terms of the rigid gender binary society expects everyone to fall into. Instead, for people like her, the idea that she needed to be fixed and that her intersex identity wasn’t valid contributed to stigma that makes intersex people feel as if their identity is a big secret.
An estimated 1.7% of the world is born intersex, but the idea that there’s something physically wrong or broken about their bodies has kept many intersex people from coming out. It wasn’t too long ago that doctors believed queer people and transgender people needed to be fixed, too — though they believed their affliction was mental, rather than physical. Before 1973, homosexuality was an actual disorder listed in the Diagnostic and Statistical Manual Of Mental Disorders (DSM), and the DSM only changed its view on transgender people four years ago. In 2013, the manual updated its entry on gender identity from “gender identity disorder” — which described being transgender as a mental illness — to “gender dysphoria” — which describes the feelings of distress a person can have when their gender does not match with their sex assigned at birth.
Of course, the medical community’s changing opinion of queer and transgender people didn’t undo homophobia or transphobia overnight. Both communities have fought hard to reach the level of acceptance they have today, which is still sorely lacking. But Weigel argues that being recognised by doctors as real and valid did give queer and trans people the potential freedom to come out without fear of being told that they had a mental illness.
Although doctors are often already aware of someone’s intersex status when they’re born, and in many cases attempt to “fix” them, intersex people frequently feel stigma that keeps them from being open about their identity. And that means that, all too often, intersex people aren’t able to take up space in the LGBTQIA+ movement. The lack of intersex people in queer communities means that queer people aren’t building relationships with intersex people and therefore are less likely to fight for issues that directly impact them, Weigel says — issues that include getting rid of the very surgeries that suggest intersex people shouldn’t exist.
“Doctors often play God and choose a gender for an intersex child,” Weigel says. “Then they tell the kids that they’ve been fixed and should never talk about being intersex.”
Weigel, who was born with XY chromosomes, says that although no doctor ever explicitly told her that she shouldn’t talk about being intersex, she knows people who did hear from their doctors that they would be persecuted, judged, and bullied if they ever told anyone about their gender. Sometimes, the idea that they shouldn’t come out as intersex even comes from family, she says, but it isn’t always from a hateful place.
“Their motives are wanting to make sure these kids are accepted and okay,” she says. “What really needs to change is societal stigma so parents and doctors recognise that these kids are okay.”
It’s the stigma, which is perpetuated by normalising surgeries, that keeps intersex people in the closet and out of LGBTQIA+ spaces, she says. It wasn’t until Odiele came out publicly, in fact, that Weigel had the courage to tell her own story.
“Reading about not just any person, but a total badass, who was born with a similar ‘condition’ and still managed to get married and attain major success, gave me the courage to face my own demons and sort out my own complicated feelings toward myself,” Weigel wrote on Medium.
Odiele, for one, seems to agree with Weigel. She’s had similar experiences with doctors who told her that surgery had fixed her and that she no longer needed to talk about being intersex.
“Always we were told, ‘You will not find a partner, you’ll be bullied, you won’t find a job,’” Odiele tells Refinery29. “Always, we had to pretend we fit in a box.”
Sometimes, intersex people themselves are kept in the dark, she says. Odiele went through “normalising” surgeries when she was a child, but she didn’t hear the word “intersex” until she was 17 years old and found it herself in the story of an intersex woman in a Dutch magazine.
“We’re still fighting something intersex activists have been fighting for 20 years,” she says. That fight is for intersex people to have the autonomy to decide what’s best for their bodies and for doctors to finally recognise that they don’t need fixing.
“It’s quite beautiful to be intersex,” Odiele says. “Our bodies need to be allowed to exist.”
Since Odiele’s coming out interview, the conversation about intersex people has started to change. More people are realising not only that intersex bodies should be allowed to exist, but that they even exist at all. Two years ago, Odiele says, when you typed “intersex” into Google, all you would get were results about where you could go to have surgery. Now, articles that explain the dangers of normalising surgery come up.
Weigel contributes much of the change to influencers like Odiele — after all, it was the model’s coming out interview that sparked Weigel’s own activism. She hopes that seeing people like herself and Odiele living successful lives will inspire more intersex people to come out, and that someday the ‘I’ in LGBTQIA will be a little less silent.
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