"They're tired of explaining their own bodies": Intersex folks counter right-wing hate and shaming

"The 'I' in LGBTQIA+ doesn't stand for 'invisible,'" advocate and author Alicia Roth Weigel says in director Julie Cohen's thought-provoking new documentary, "Every Body," in theaters now. Weigel, like roughly 200,000 other people living in the United States today, is intersex. And in a country that can be oppressive in its devotion to the binary, Weigel's community has long had to fight just to be acknowledged at all.

"The reason that it hasn't been talked about, and the reason that people think of intersex as being so rare and so anomalous," Cohen explained on "Salon Talks," "is that those who are born intersex or develop intersex traits are often subjected to unwanted surgeries and told to keep secret about it, like this is something shameful. Or," she adds, "they're not even told themselves."

Cohen was nominated for an Oscar for her last film, "RBG," about former Supreme Court Justice Ruth Bader Ginsberg. "Every Body," which recently premiered at Tribeca, follows three contemporary intersex Americans as they grapple with the legacy of Dr. John Money, whose theories on gender shaped how doctors and families were instructed to treat intersex children for generations.

Watch the "Salon Talks" episode with Julie Cohen here to hear more about what the intersex community is learning from other LGBTQIA+ movements and why she wanted to tell a story about "the power that people can have by standing up for their own rights." "These are really upbeat, enthusiastic, hugely intelligent and inspiringly humorous and often joyous people," Cohen said. "I think they're all a little bit sick of feeling like they're supposed to feel steeped in trauma."

The following interview has been lightly edited for clarity and length.

While watching the film, I realized I truly didn't know what it means to be intersex. Let's start there. 

The importance, but also the challenge of making this film was the level of societal ignorance on this subject. Intersex people are people who have biological, anatomical and/or chromosome traits that put them not squarely in the male or female box that we're all accustomed to. Just to use some examples from the film, maybe you have XY chromosomes — what we think of as male chromosomes — but present externally what we would think a woman is. Maybe it's somebody who has external genitals that are female, but internally instead of ovaries, there's actually internal testes. There's a whole range. There are probably somewhere around 40 different conditions that might fall under this broad medical umbrella of intersex.

A lot of us grew up with the very outdated word "hermaphrodite," which is not used anymore. 

There's a logical place where that comes from. The term "hermaphrodite" is a term in the animal kingdom that you learn about when you're in biology class. I remember learning about hermaphrodites in animals in junior high school. That is something that biologically exists in certain species that have full reproductive male and female organs, and as a result can reproduce without a mate. There are no people like that. That's why the term "hermaphrodite," which up until just a few decades ago was often used to describe intersex people, is problematic. It's so misleading.

"The power of people speaking up always really moves me."

The numbers that the United Nations use for intersex most broadly defined, which could mean any intersex traits, is 1.7% of the population. When you're looking at people whose intersex traits are a bit more pronounced, like those who we feature in the film, people who might be referred for surgery, that gets you to a smaller number. We calculated it at more than 200,000 Americans. This isn't tiny. It's not a really super rare condition.

The reason that it hasn't been talked about, and the reason that people think of intersex as being so rare and so anomalous is that those who are born intersex or develop intersex traits are often subjected to unwanted surgeries and told to keep secret about it, like this is something shameful. Or they're not even told themselves. Their parents would consent to having surgery done on them in infancy or childhood and then just never really explain. There are all kinds of intersex adults who have some memory of, "I know I had some kind of surgery or series of surgeries and/or I was told to take hormones as a child." They never exactly understood why. Sometimes they give a long complex medical term. The ignorance about being intersex often even applies to intersex people themselves when they're young.

There is one person at the center of the way in which intersex people have been classified and treated for decades. He's at the root of this story as well. Tell me about Dr. John Money.

Dr. John Money was a sexologist at Johns Hopkins University for many decades. He was at the forefront of studying anomalies in gender, and actually had some relatively – for the time in the '50s, '60s, '70s, into the '80s – prescient thoughts about gay and trans people. But he also really took an interest in intersex people, children particularly, and was key in developing this notion that gender is not fixed for the first two or three years of life. His theory was that if a child is born intersex, you just pick a gender, turn the child with surgery, hormones, whatever's necessary into that gender and raise it in that gender.

Most often what was happening is that intersex children were being raised as girls. The easy to understand, if a bit glib, phrase for understanding this is it's easier to dig a hole than build a pole. For medical reasons, it was easier to turn intersex children into girls when they may or may not as they grew understood themselves to be girls. Dr. Money basically set out to prove that a child's gender is malleable by taking a young boy who had had his penis severely injured in a botched circumcision and moving towards surgery and a program of counseling to turn this one hundred percent biological boy into a girl. [It was] with the thought that it would be better to be raised as a girl, even if you're a boy, than to be a boy without a penis.

This story of David Reimer is absolutely heartbreaking. He was not born intersex. He was made into something he never signed up for without his consent, in many ways without his family understanding. Tell me about what happened to him, because it's a tragedy.

He was injured in a botched circumcision. At around a year old, surgery was performed to entirely remove his penis, to castrate him, and he was told that he was a girl. His parents actually moved to another town for a while, so that nobody would remember. I should mention, and the reason that Dr. Money was so fascinated with his case, David was an identical twin. He had a twin brother named Brian. The idea was, "Oh, this will be a perfect test case. We're going to raise this boy as a girl. Give the boy boy toys. Make David, whose name they had changed to Brenda, wear dresses. Give him girls toys to play with, tell everyone he was a girl.

He never felt comfortable being a girl because even though he didn't know his medical history, he understood himself to be the boy that he was. By the time he was a teenager, his parents told him the truth. He decided to go back to living as a boy. Reconstruction of his penis hadn't been available when he was a baby in the '60s, but later in life it was possible, so he began living as a male. He actually got married, adopted the children of his wife. But his case spread. Dr. Money was spreading his case through medical records and medical journals as a huge success because David was anonymous. Because nobody was named, there was really no way for people to check up when Dr. Money's writing these reports like, "This is great. We raised a boy as a girl. He was happy as a clam." Now, at a certain point, Dr. Money did stop writing. Dr. Money didn't keep talking about it, but he didn't retract what he had written.

Tell me about the three people at the heart of "Every Body," the amazing activists who are really changing the conversation.

These are three people who all in some ways are the legacy of Dr. Money in that because they were born intersex and the program for them was surgery — surgery that in their three cases was not medically necessary — and secrecy. They did not understand fully their own conditions and they were told to be quiet about them.

"There are probably somewhere around 40 different conditions that might fall under this broad medical umbrella of intersex."

The amazing thing about these three relatively young people in their 30s and 40s now is how they've come through this. How with the help of the internet, frankly, where they started to learn that there were other people like them and that they weren't some anomalous freak, but actually part of a substantial group of people who have intersex conditions.

They decided they were going to dispense with this whole idea of keeping their bodies a secret, talk about what had happened to them as a way to prevent it from happening to other people later and as a way to just shed the shame. All three of them are tremendously engaging, very successful people each in their own way.

River [Gallo], who identifies as non-binary now, is an actor in Los Angeles. Alicia [Roth Weigel], who was raised as a girl and identifies as a woman, is a writer. She's just finishing a book called "Inverse Cowgirl" about her intersex life. But also is a political activist and incredibly involved in her community in Texas of all places of fighting for the rights of LGBTQIA people. And then Saifa [Wall], who is a PhD student now, he's from the Bronx but lives in Northern England.

In a sort of similar situation to David Reimer, Saifa was born ambiguous. Looking on his childhood medical records as we do in the film, you see that the doctors checked off a box that said ambiguous and then they crossed it off and wrote female because his genitals were somewhere in between. He said he would say to his mom all the time, "But I'm a boy," and his mom would say, "No, no, you're a girl," because that's kind of what she had been told by the doctors that she should do. It wasn't until he was in college that he discovered what intersex people were. He understood, "Wait a second. That's me. Now I kind of get my life, and I'm going to live as the man that I am."

For people that have been through a lot of trauma, as you saw if you saw the film, these are really upbeat, enthusiastic, hugely intelligent, and inspiringly humorous and often joyous people. I think they're all a little bit sick of feeling like they're supposed to feel steeped in trauma. They've decided to come out as proud intersex people, very much inspired by the gay rights movement, by the trans movement. Watching them fighting the fights that they're fighting and starting to form a community with other intersex people is a lot of what the film is about.

I was also shocked while watching this to learn that the kinds of procedures and therapies that are being fought against to help trans kids are being imposed involuntarily upon intersex kids. This was happening at my hospital in New York City, in a world-class facility. These kinds of procedures are being done on kids against their will. What does that look like? And in what ways is our understanding of gender informed by the trans movement and the LGBTQI+ movement?

I just want to make an interesting point. Often these surgeries are being done on babies and children who don't have much of an opinion one way or the other. Their parents are consenting to the surgery often based on not clear understanding, but very much with the best interest of children at heart.

The particular surgery we talk about in the film being done here in New York is for a particular condition where sometimes a child basically would be a girl with a very large clitoris, large enough that it would appear externally "abnormal" and the assumption has been like, "Well, you'd rather look 'normal,' right? A girl wants to look like other girls, doesn't she?" The thought is, "Maybe if we just take care of this whole situation early in the baby's life, and then she'll never have to know about it. And she will be spared the trauma of feeling like a weirdo."

I'm a mom. If someone had said to me when my child was an infant, "There is a problem and we can fix it," which is what a lot of these parents were told, I get that completely. 

I do want to get back to your very good analogy and interesting contrast with laws being imposed now on trans children and teens. A lot of states in this country are raising, and in many cases, passing laws that can penalize doctors and even parents for gender-affirming care for trans people. Mainly they're talking about giving hormones because puberty-blocking hormones is something that's happening sometimes for trans young people going into puberty. There's a lot of talk about surgery, but for the most part, surgeries aren't done on trans children, that would happen after the child reaches 18 or older. But there's a lot of talk about stopping surgeries. Even in a lot of these cases, the laws are saying no psychological care that affirms the kids' gender, which is really troubling considering we know about the high rates of suicide for trans kids and teens.

"People want things to be very clear, so when things feel like they're a little blurry, everyone freaks out."

The incredible part where intersex people come into this conversation is the vast majority of those laws, those bills that are being debated, have these little provisions to them that say, "But for intersex kids . . ." and rather than using the word intersex, often they list a whole series of medical conditions that could count as intersex — they say, "But for intersex kids, basically knock yourself out, do whatever kind of surgery you feel is necessary."

Alicia, one of the participants in our film, makes the really strong point that the reasoning is like that the legislators bringing up these laws are saying, "Well, trans kids aren't normal, so we need to not let them be trans. And intersex kids also aren't normal." So, we have to basically stuff them into the male and female box, so that everyone can feel like, "It's normal, it's fine. It's all the gender expectations that we've all been given and have lived with since the beginning of time about what a girl is supposed to be and what a boy is supposed to be." Boxes, by the way, that don't work out so well for many men and women, regardless of whether they're trans or intersex or not.

Related

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Misconceptions and truly dangerous information about gender and gender identity are being peddled in the media by people like Tucker Carlson and Steven Crowder. There's a wonderful moment in the film where Alicia gets into a very articulate debate with Crowder. Tell me about how these people are perpetuating these really dangerous and completely medically misinformed ideologies about gender.

I think there's just a lot of fear about anything that doesn't fit expectations. I actually think that's become such an issue in all kinds of contexts having to do particularly with gender and with race and with sexual orientation. People want things to be very clear, so when things feel like they're a little blurry, everyone freaks out.

As far as there's this thought that the trans people are coming to get your children, I don't really quite know what to say about that, but it's an argument that has caught on the political right in recent years in the same way that a very similar argument having to do with gay adults was a factor going back to around the '80s. I remember it from my childhood, the thought of, there's going to be gay teachers in your school turning your child gay. Now there's talk about trans people.

As far as the intersex part of this, I think the biggest complaint and concern of the intersex people that are in my film and that I've come to know over the past couple of years is that they're ignored entirely to the point of being invisible. I can now confirm that. We've put the trailer for our film out into the world, and while there's so much support and love and admiration for people coming forward and telling their stories and speaking their truth, there is a minority opinion of people whose basic comments on social media towards the participants in the film are either like, "I hate you and you just should be quiet." That's one thing. But another thing is, "I don't believe you exist." And that's actually not a tenable position. There are intersex people. To say, "I don't think they exist," just doesn't make sense. Check it, look on TikTok, people are saying it.

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Intersex people are roughly 2% of the population. That's the same percent of the population that are identical twins and people with red hair. What brought you to this story? 

I was really drawn to this and gravitated to this story because of just an admiration for the power that people can have by standing up for their own rights, that I think just resonated with me and reminded me of other earlier activist movements. Whether you're talking gay and trans rights or civil rights or the feminist movement, there's always a period of you've been boxed down and you've been told you shouldn't be speaking up. The power of people speaking up always really moves me.

What brought me to the story specifically was a bit roundabout. About five years ago, my friends at NBC News, where I used to work, asked me to come back and look through their archives for stories that might make good jumping-off points for documentaries. I immediately gravitated to the David Reimer and Dr. Money story, and was just looking into what the modern-day relevance was. It became quite clear, first of all, that this case, even though it was completely debunked, had had an impact that still lasts to this day on how intersex people were treated. That led me to looking into the intersex rights movement, and I just actually couldn't believe what a fascinating and blossoming movement this was considering how little attention it's gotten.

Even though we're talking about a small percentage of the population, we can all participate in and be allies for the movement, right?

Absolutely. I think that's been true in so many movements. It takes the support of the larger community, for a smaller percentage, people who've struggled with something and are fighting for their own rights, our success is actually all interconnected. A lot of what intersex people have told me they want is just for people to explain what intersex is. They're tired of explaining their own bodies. Saifa, one of the participants in the film, said to me the other day, "I'm tired of doing Intersex 101. I want some non-intersex people doing that for us, so that we can live our lives and fight for what we want to do without having to explain every single thing about your own genitals."

Watch more

"Salon Talks" about the LGBTQI+ community

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• In "Changing the Game," young trans athletes become "a beacon for their own community"

• "High Desert" star Patricia Arquette on fighting for equality: "We need to claw back some territory"