For the intersex community, ‘Every Body’ exists on a spectrum

As an intersex person, Alicia Roth Weigel knows that biological sex is more complicated than two boxes on a birth certificate.

“Intersex people are born with physical traits that don’t fit neatly into a ‘male’ or ‘female’ box,” Weigel says. “We have combinations of hormones, chromosomes, internal reproductive organs, external genitalia that just doesn’t fit neatly on one of those two binary options that you were taught in elementary biology class are the only options.”

Weigel, who identifies as she/they, was born with androgen insensitivity syndrome — a condition in which a person has both X and Y chromosomes, but does not respond to male hormones. Though Weigel presented as female at birth, tests revealed that she lacked a uterus and ovaries, and that she had internal testes.

Citing the risk of testicular cancer, Weigel’s doctors convinced her parents to have her testes surgically removed, but Weigel now says the cancer risk was overstated — and that the removal of her testes as an infant led to complications later in life.

“By removing my testes, they basically put my body into artificial hormone withdrawal and didn’t give me new hormones until a certain age when they decided it was time to induce puberty on my body,” she says. “Puberty that would have happened naturally on its own had they left my body intact.”

An advocate for the rights of intersex people, Weigel is one of three intersex people profiled in Julie Cohen’s documentary Every Body. Cohen co-directed (along with Betsy West) the documentaries RBG, Julia and Gabby Giffords Won’t Back Down. She says Every Body was inspired by the story of David Reimer, a Canadian man whose botched circumcision led to him being castrated as a baby and raised as a girl.

Though the sex researcher who treated Reimer maintained that a child’s gender was malleable until the age of 2 or 3, Cohen says Reimer’s case ultimately proved otherwise. Over a period of time, he assume a male gender identity, started taking male hormones and eventually had surgery to reconstruct a penis.

“David always felt uncomfortable [as a girl] and even went as far as always trying to urinate standing up because he actually knew he was a boy,” Cohen says. “Ultimately, the parents broke down and told him the truth. … They thought he would be horrified by this information. In fact, he was incredibly relieved because now his whole childhood made more sense to him.”

Interview highlights

On the notion that biological sex exists on a spectrum

Alicia Roth Weigel: I think society understands at this point that sexuality is a spectrum. Some people are gay, some are straight, a lot are in-between. And society is also starting to understand that gender is a spectrum, that you’re not just a man or a woman, but there’s a lot in between there, too. What society hasn’t quite learned yet is that sex is also a spectrum. … “Intersex” is really an umbrella term. It encompasses a wide variety of combinations. But what we all share is that our anatomy doesn’t fit super neatly into a binary box.

On growing up intersex

Weigel: I was told that … I had a problem and it was being fixed and I should never talk to anyone about it. … I was told that I had testes that could become cancerous, and that’s why they were removed. And that was part of this pathological syndrome that I should never tell anyone about, because it is shameful. …

I felt like a freak my whole life. And that led me to a bunch of different behaviors to “compensate” for being a freak. On the positive side, I became a tri-varsity athlete. I got stellar grades. I went to the Ivy League school. I did all the extracurriculars to try to prove to the world that I was worthy of love, because I didn’t fundamentally believe that based on how I was raised. Those are the positives. The negatives were I started abusing a lot of different substances very young, and that was to try to obliterate these feelings of shame and isolation that I felt. And having to lie to the world about who I was.

On undergoing surgery to remove her testes as an infant

Weigel: What we now know, looking at the data, is my risk of getting testicular cancer was only somewhere between one and 5%, and much later in life — that that cancer never happens in childhood for people born like me, or very rarely, if it ever does. And so because of a somewhere between one and 5% risk of cancer, they decided to remove my hormone-producing organs without asking me. And the other kicker is your testes or your ovaries, they do a lot more than just control the way that you develop in terms of your gender traits. They can control things such as bone density, how your organs develop in a variety of different ways. … And by [removing my testes], because my body was in hormone withdrawal, it started leaching calcium from my bones. … And so essentially, by trying to fix something that wasn’t even broken, they created problems. By trying to fix me, they broke me. …

There are major organizations, like the United Nations, that defines these surgeries as torture. … Genital mutilation is not something that only happens in far off tribes in Africa. It happens in accredited hospitals across the United States each and every day. And yet society has such an aversion to curiosity, to, rather than “othering” something that is different, embracing it and learning about it. And that’s where my anger is. It’s like we need to teach our children, who will then become adults, that we need to remain curious and open minded and be open to learning and be open to loving. Because only then will these surgeries really stop. And only then will intersex kids be able to be raised out as who we truly are.

On how David Reimer‘s case was used to justify surgery on intersex infants

Cohen: This actually did impact the medical literature and the whole study of intersex infants, because this case, although David Reimer wasn’t intersex, this case was used as the proof, as the justification for performing surgeries on intersex children. Like if you can make a boy a girl through surgery, then certainly you can take an intersex child somewhere on a spectrum and raise that child as a girl and they can be happy and healthy. It wasn’t true even in this test case. But that … false interpretation spread fairly fairly widely. And this case was used as a justification for [surgery] on intersex infants and children.

On how current legislation aimed at the trans community also impacts the intersex community

Weigel: The unfortunate bit is the world doesn’t know what intersex means yet. And so when they read these bills, they don’t know what that means. But we are explicitly written into all of these anti-trans health care laws across the country. These laws say: Deny surgeries and hormones to trans people who are asking for them with consent. But you can continue to force those same exact surgeries and those same exact hormones on intersex babies who are not only too young to consent, but are too young to speak. …

So unfortunately intersex is on the agenda. A common misconception that I like to correct is that Republicans actually very much know about intersex individuals because they have written us into their bills targeting the trans community. So unfortunately, the Republicans have done their homework. They know that intersex people exist and they are actively targeting us. The Democrats unfortunately have not, and they don’t even know that we exist in order to protect us. So I do like to clarify that misconception because one side has done their homework and are using it to hurt us. One the other side needs to do their homework to protect us from those who seek to harm us.

Heidi Saman and Seth Kelley produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Carmel Wroth adapted it for the web.