For the intersex community, 'Every Body' exists on a spectrum

TERRY GROSS, HOST:

This is FRESH AIR. I'm Terry Gross. What is gender? What does it really mean? Some people don't identify with the gender they were assigned at birth. Some people identify with more than one gender, and, for some, gender fluctuates over time. My understanding of gender has been broadened by listening to the experiences of people who identify as transgender or nonbinary. A gender variation we don't hear much about is intersex. People who are intersex have anatomical and/or chromosomal variations, some of which are typically defined as male, others as female. I think we can learn a lot by hearing the experiences of intersex people - their experiences physically, medically and socially. I know I learned a lot from the new documentary "Every Body" about three people who were born intersex. Doctors determined at birth what gender they should be and, in some cases, performed irreversible surgery on the infant to make the body anatomically conform to one gender. Doctors advised the children's parents to keep secret that their child was intersex, including not even telling the child until they were in their teens, which caused profound gender confusion for the children.

With me is one of the people in the film, Alicia Roth Weigel, who was born intersex and identifies as she and they. She's an advocate for the rights of intersex people. She consults with hospitals, government agencies and other organizations to build culturally competent health care systems, including for intersex people, and to safeguard bodily autonomy. She's also a human rights commissioner for the city of Austin. She has a memoir that will be published in the fall called "Inverse Cowgirl."

Also with me is the director of "Every Body," Julie Cohen. She also co-directed the documentaries "RBG," about Ruth Bader Ginsburg, "Julia," about Julia Child, and "Gabby Giffords Won't Back Down." Her documentary "My Name Is Pauli Murray" is about a nonbinary Black lawyer and poet who was an early advocate of applying the 14th Amendment's equal protection clause to gender equality. Murray's work was cited by Ruth Bader Ginsburg in one of her Supreme Court briefs. We're going to be having an adult conversation that will likely involve aspects of sexual anatomy, so, parents, use your discretion. By the way, "Every Body" is playing in select theaters around the country.

Julie Cohen, Alicia Roth Weigel, welcome to both of you, and congratulations on the film. So I want to say, especially to you, Alicia, that I'm going to be asking about the physical, emotional, cultural, social aspects of being intersex. And I feel comfortable asking you about these things 'cause you talk about them in the film and I'm sure in other places as well because you're an advocate for intersex people. But if I ask anything that you're not comfortable talking about, all you need to do is tell me. And if I unintentionally use any language that is considered inappropriate or offensive, I hope you'll tell me, and that will help educate me and our listeners. Does that sound OK?

ALICIA ROTH WEIGEL: It sounds great. And while intersex people have gotten very used to sharing an inordinate amount of details about our bodies and private lives, one thing that I think even non-intersex people can agree on is we all have bodies. So I think, at some point, it would be awesome to get to a point as a society where we can talk about those bodies without shame and stigma.

GROSS: Thank you for saying that. I agree about the shame and - it would be nice to talk about bodies without shame and stigma. So let's start with what intersex means. Alicia, you want to get us started? What is the meaning of that? I just gave a very, very cursory explanation.

WEIGEL: Intersex people are born with physical traits that don't fit neatly into a male or female box on a birth certificate. So 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. 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. You're not only male or female. Two percent of the world is born somewhere in between those two poles on that spectrum.

GROSS: There are more anatomical combinations of male and female traits when you're intersex.

WEIGEL: 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.

GROSS: When I was telling people that I was going to do this interview inspired by this really interesting documentary about people who are intersex, the response I got from several people was, oh, you mean about hermaphrodites? So why don't we use that word anymore?

WEIGEL: A couple of reasons - one, because it has been used as a slur and as the butt of jokes for a very long time and, two, because it paints a really false picture of our community. I think when people hear the word hermaphrodite, they picture someone walking around with two fully loaded sets of genitalia in their pants, which, actually, doesn't exist in human biology. What does exist is unique combinations of sex traits. So, for example, I myself have XY chromosomes, which most people would associate with being male. However, I look very female on the outside in the way that I present because my body was born in a way that does not respond to testosterone.

So despite the fact that I was born without a uterus and ovaries and was instead born with internal testes, my testes would have produced testosterone, but my body would have rejected that and peed some of that testosterone out and converted the rest to estrogen. And I would have developed naturally on my own. So I view that actually as a superpower. It's like my body can convert testosterone to estrogen, and I think that's pretty cool. But, unfortunately, the rest of the world doesn't quite see it that way yet. The reality of sex is that it is a lot more complicated than just two boxes on a birth certificate. And rather than changing the birth certificate to fit the natural diversity of human bodies, unfortunately, we currently change human bodies to make them fit on a piece of paper.

GROSS: How was your human body changed when you were an infant?

WEIGEL: My parents actually knew that I was intersex when I was born because before I was born they did an amniocentesis test, which is kind of like a - an ultrasound but a little more invasive. It involves a needle, and it provides a lot more information. And in this current day and age of genetic testing, a lot of people know a lot of information about their kids' genetics even before they're born. And so my parents knew from that test that I had XY chromosomes. So when I popped out of my mom with - looking like a female with a vagina, everyone knew that something was up.

Had that genetic test not been performed, my parents never would have known that I was intersex until much later in life when I just never menstruated, you know, come the time of puberty because, again, I was born without a uterus and ovaries, so there would be no organs to menstruate from. But because they knew from when I was born, doctors very quickly told my parents that I had internal testes. You know, they ran some tests that told them that. And that my internal testes could become cancerous one day. And so they recommended removing them as soon as possible. And here's the kicker - anyone who's born with testes could get testicular cancer one day. That is true. What we now know, looking at the data, is my risk of getting testicular cancer was only somewhere between 1 and 5%. And much later in life - 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 1 and 5% risk of cancer, they decided to remove my hormone-producing organs without asking me. And the other kicker is, you know, your testes or your ovaries - they do a lot more than just, you know, control the way that you develop in terms of your gender traits. They control things such as bone density, how your organs develop in a variety of different ways. And so 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. Let me reiterate - puberty that would have happened naturally on its own had they left my body intact.

And by doing that, because my body was in hormone withdrawal, it started leaching calcium from my bones. And I am now - at age 32, I have osteoporosis, which you might, you know, typically associate with someone much, much, much later in life. And so essentially by trying to fix something that wasn't even broken, they created problems for themselves. By trying to fix me, they broke me.

GROSS: So if I understand you correctly, had they left in your testes, your testes would have produced testosterone, but your body would have converted that to estrogen?

WEIGEL: That is correct. My testes would have produced estrogen that would have induced a typical puberty that you might associate of a female. I know intersex people who were left intact and developed naturally on their own. And an analogous example I like to give because a lot more people are familiar with something called the BRCA gene than they are with intersex people. The BRCA gene is a genetic variant that confers with it a high risk of breast cancer and ovarian cancer. And the risk of cancer with - if someone is born with the BRCA gene is much, much, much, much, much higher than my 1 to 5% risk of testicular cancer ever would have been.

But you don't see them force-removing little girls' ovaries who are born with the BRCA gene because they could get cancer one day. They wait until the girl is of a certain age where she is able to make an informed decision with her consent that says, hey, I know I have a risk of cancer one day. And so I would rather undergo a hysterectomy and forego my opportunity to have children one day and understand that my body is going to function differently - I'll probably have to take hormone replacement. You know, that is made as a consensual decision with that child.

GROSS: How old were you when your testes were removed?

WEIGEL: I was an infant. I was less than a year old. And so not only was I not old enough to have a say in the decision-making process, I couldn't even say mama or dada yet.

GROSS: If your body had been left intact, and then later, when you were older - and you were asked to make a decision, what decision would you have made?

WEIGEL: I absolutely would have kept my testes. I would have let my body develop naturally. I would have monitored them for cancer over time. And yeah, it would have saved me a lot of headache, especially living somewhere like here in Texas where it's really hard to access hormones already.

And now that Florida has passed certain laws, I have intersex people reaching out to me online that say, you know, we're caught up in this, too. They're blocking gender-affirming care for trans folks. But I'm intersex, and I can't get my hormones. And so it's really interesting that doctors create this problem for us, that we need to take external hormones, and then politicians don't allow us to take those hormones.

GROSS: I hadn't thought about that, you know, that that you need hormones that are being - you need treatments that are being banned in some states.

WEIGEL: Yeah. All of these bills that affect the trans community also directly affect the intersex community. And actually we are written into all of them. 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.

GROSS: So you're talking about this double standard that people who identify as trans aren't being allowed to get the surgeries, but children who are born intersex are forced into these surgeries before they're even before - they're capable of cognition. And it's a life-changing surgery.

WEIGEL: Yes. And the irony is the people who are passing these laws say that it is to protect children. If it were to protect children, it would not be written that these same procedures, surgeries and hormones that they believe to, quote unquote, be "child abuse" - so they're OK with abusing some children. They're OK with abusing intersex children, but not trans children. It just points out the utter hypocrisy.

GROSS: Well, let me reintroduce you both. My guests are Alicia Roth Weigel, one of three intersex people profiled in the new documentary "Every Body," and the film's director, Julie Cohen. We'll be right back after a break. This is FRESH AIR.

(SOUNDBITE OF SCENIC ROUTE TO ALASKA'S "INSTRUMENTAL")

GROSS: This is FRESH AIR. Let's get back to my interview with Alicia Roth Weigel, one of three intersex people profiled in the new documentary "Every Body." Also with us is the film's director, Julie Cohen. Intersex people were born with anatomical and/or chromosomal variations, some of which are typically defined as male, others defined as female.

How old were you when you were told that you were intersex? And was it your mother who told you?

WEIGEL: I don't remember how old I was. I was very young. I was told that I have complete androgen insensitivity, which is, like, a highly pathological medical term, and that I had a problem, and it was being fixed, and I should never talk to anyone about it.

GROSS: Were you told you had androgen insensitivity syndrome, or was it explained to you that you have testes that will produce testosterone that your body will convert into estrogen - you know, that it will produce male...

WEIGEL: I was...

GROSS: ...Hormones that will automatically be converted into female hormones?

WEIGEL: 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.

GROSS: That's the last thing a kid needs to hear is like, don't say anything because your body is shameful. Your existence is shameful.

WEIGEL: It's something that the whole queer community can identify with, is being told that you are shameful simply for existing, simply for being born.

GROSS: Did you walk around feeling like a freak?

WEIGEL: Absolutely. I felt like a freak my whole life, and that led me to a bunch of different behaviors to, quote-unquote, "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 in having to lie to the world about who I was. And in addition to those substances, I also became very sexually active very early. And I credit that to the fact that, one, I had doctors poking and prodding my naked body since I was very young as an intersex kid. I went under anesthesia one time in my youth so that doctors could, quote-unquote, "observe my body." And so I just have this memory of these - blacking out as all these men, like, gather around my naked body to, quote-unquote, "look at me." And, you know, I got used to having my personal space and my body violated from a very young age.

And I was desperately trying to prove to the world that I was just a normal girl. And I found out pretty young that sex was a good way to do that, because if a man wanted me, then that male gaze validated that I was desirable and that I was worthy of love. And it wasn't until many years later until I realized that I am worthy of love simply because I exist.

GROSS: At what point did you have that realization? Like, what created the realization that there could be - that there was an intersex community, that you could stand up for your rights, that you weren't a freak, that - and that you could be outspoken about this, that this was a cause that you could advocate? I'm sure this all happened in stages. But what was the first stage in you reaching a kind of more sophisticated understanding of what was going on and a more body-positive understanding?

WEIGEL: I read an article in Vogue magazine where a model who has now become a good friend of mine, Hanne Gaby Odiele, had come out as being intersex. And I had never heard the word intersex before because, keep in mind, I was always told I had this issue called complete androgen insensitivity. It was being fixed, and I should never talk to anyone about it, including my own brother. And so I was reading Hanne's story in the pages of Vogue, and I had never heard this word intersex, but her story sounded a lot like mine - the surgeries, the hormones, the parents and doctors telling you to never tell anyone.

And so I went home that night and I went on - down a Wikipedia rabbit hole for Lord knows how many hours and at 27 years old, realized, holy moly, I am intersex. And there's this whole community of people like me around the world who are living out as who they are, who are proud of who they are, and are able to build community with one another. And so that was the first step of really recognizing that I was part of the community.

GROSS: Twenty-seven - to live 27 years and not know something so fundamental about your very being. Well, let's take a short break here, and then we'll talk some more. If you're just joining us, my guests are Alicia Roth Weigel, one of the three intersex people profiled in the new documentary "Every Body" - also with us is the film's director, Julie Cohen. The movie is playing in select theaters around the country. We'll be right back after a short break. I'm Terry Gross, and this is FRESH AIR.

(SOUNDBITE OF HARRY CONNICK JR.'S "VOCATION")

GROSS: This is FRESH AIR. I'm Terry Gross. Let's get back to my interview with Alicia Roth Weigel, one of three intersex people profiled in the new documentary "Every Body." Also with us is the film's director, Julie Cohen. People who are intersex have anatomical and/or chromosomal variations, some of which are typically defined as male, others as female. We're having an adult conversation, so, parents, use your discretion.

Alicia, I want to get back to something we were discussing earlier. You must have had to deal with a lot of just, like, anger against the medical people who prodded and poked you and put you under anesthesia so that they could just, you know, examine your body more about the fact that you were given this surgery without being old enough to have a say in, like, what your gender was going to be. How have you dealt with whatever anger has come out of all of this?

WEIGEL: If I'm being honest with you, Terry, I never was really mad at my parents nor the doctors because they are operating on society. I am more mad at society that leads the parents and doctors to feel like they have to operate that way. And the reason why I'm more mad at society is because we have been out here shouting for 30 years about what's happening to us. 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 raise - be raised out as who we truly are.

GROSS: There are places that have banned or condemned intersex surgery on infants, you know, banned or condemned it before the child has - is old enough to have a say in what they want, unless it's medically essential, as opposed to just gender-conforming. And, Alicia, you were actually active in Austin, I believe, in getting city council to state the condemnation.

WEIGEL: Yes. That is very true. So there are actually entire countries that have banned these procedures, from Greece to Kenya. Unfortunately, the United States being as large as it is and as divided as it is, it's a lot harder to pass sweeping human rights changes like it is in some of those other countries. And, unfortunately, living in a state like Texas, we can't even try that at the state level either because there are a lot of people, as we spoke about earlier, that are passing legislation to actively harm rather than help us. What we were able to do in Austin was to pass a bill condemning these surgeries.

So the message still got out there to doctors and parents and everyone who was following that ordinance when it passed that we fully condemn these surgeries and that we're not the only ones doing so, that there are countries around the world that are farther - way farther ahead than we are here. And we also included as part of that local policy to mandate a public education campaign that would reach doctors and parents of intersex kids so that they could make better-informed decisions than my parents were able to, 'cause really, fundamentally, a lack of information is what is perpetuating these issues.

GROSS: So is surgery still - like, infant surgery, still the standard medical practice now?

WEIGEL: It depends on which intersex variations you are talking about. In my own variation, it is - as doctors learn about the extremely low rate of cancer and the complications that are created by early surgery, there is a much lower prevalence of my surgery happening now than there were 33 years ago when I was born. However, there are surgeries - external surgeries - happening on the genitalia of intersex children to force it to fit better one way or another. And so they default to pushing intersex children towards the female box.

GROSS: Alicia, one more question for you before I want to introduce Julie into the interview. In Austin, you protested the Texas bill that would have made it illegal for people to use bathrooms for a gender other than the one assigned at birth. And you protested as somebody who was intersex, who had an understanding of gender that you believed would prove that this was a really terrible bill to pass. What was your argument?

WEIGEL: Yeah. So that's actually how I first came out to the world, was in a Senate hearing, which is - let me make this very clear - not how I would recommend anyone listening come out for the first time.

GROSS: (Laughter).

WEIGEL: I like to say I came out backwards because I came out to a bunch of Texas senators before coming out to my own little brother. But the reason that I did that is because I heard the authors of this - what we'll call the bathroom bill - saying that biological sex was cut and dry. And if we went back to that, then all these trans weirdos would go back where they came from. And my existence proves that biological sex is not cut and dry, that, actually, the same amount of people are born somewhere in between as are born with red hair. And so my argument was, basically - it was less of an argument and more of a question, which is, where am I supposed to pee? Because, based on this bill, I mean, I was born with internal testes, but they still want me peeing with the women? Or if not, do they really want me to pee with the men? It's not like I can stand at a urinal. And so I guess I was kind of asking them - if they want me to pee outside, that sounds pretty unsanitary, and, like, I might get arrested for public urination.

GROSS: (Laughter).

WEIGEL: So that didn't sound like a good idea either. And I'm somewhat joking because it was mainly just to point out the ridiculousness of this bill and, basically, to kind of urge them that if they're looking to actively discriminate against a huge swath of human beings, they should probably at least open a biology textbook first.

GROSS: Let's take a short break here, and then we'll talk some more. If you're just joining us, my guests are Alicia Roth Weigel, one of the three intersex people profiled in the new documentary "Every Body." Also with us is the film's director, Julie Cohen. We will be right back. This is FRESH AIR.

(SOUNDBITE OF PRINCE SONG, "THE BALLAD OF DOROTHY PARKER")

GROSS: This is FRESH AIR. Let's get back to my interview with Alicia Roth Weigel, one of three intersex people profiled in the new documentary "Every Body." Also with us is the film's director, Julie Cohen. Intersex people were born with anatomical and/or chromosomal variations, some of which are typically defined as male, others as female.

Julie, you directed the movie "Every Body." And some background here - early in your career, you'd worked at "Dateline NBC." Then later, you got hired by NBC to go through the NBC archive and see, is there footage here that would make a good documentary?

JULIE COHEN: That's right.

GROSS: And then you found a 1999 "Dateline" story that you remembered, because this was from the period that you were working there, about twin boys who were circumcised after birth. Tell us the story here.

COHEN: That's right. So this was the story of the Reimer twins, Canadian twin boys who in the mid-'60s were circumcised. One of these boys - and these children, I should point out, are not intersex. These were anatomical boys. One of them had a really horrendous injury during his circumcision where his penis was cauterized off, essentially. This was before the age of penile reconstruction. His parents were told David is never going to have a normal-functioning or -looking penis. They were horrified.

They sought guidance, ultimately, from a sex researcher at Johns Hopkins University named Dr. John Money, who was quite visible and, you know, had a huge national profile at that point. Dr. Money had a theory about gender that it was extremely malleable up until around age 2 or 3. Basically, any child could be raised as any gender if you made the interventions early enough. So what he recommended to the Reimer family is, we should take this boy and essentially turn him into a girl.

So David had surgery to - this baby boy had surgery. He was raised as a girl, wearing dresses. They renamed him Brenda. The family even moved to a different town for a period so that nobody would remember that there actually had been a boy. David was told nothing about this. And, you know, give him dolls instead of toy trains. Like, have him see his - you know, see mom putting on makeup. Like, do all the things that, like, could help move gender development in a female direction.

This child always felt uncomfortable even though they knew nothing about it, because this had happened when David was an infant, before age 2. And David always felt uncomfortable as Brenda, even went as far as always trying to urinate standing up because he actually knew he was a boy. But whenever he would raise that, the parents would tell him, under the guidance of this doctor, like, no, no. You're a girl, Brenda. Like, you should do girl things. In adolescence, when it came time to start taking female hormones to encourage feminine teenage development, the child said - why do I have to do this? - and was told by their father, oh, you know, this is so that you can, you know, grow breasts to wear a bra. And the kid said, but I don't want to wear a bra.

Like, everything about it felt uncomfortable. Ultimately, the parents broke down and told him the truth, that he had been born a boy, that he'd had this injury and that that's why they were raising him as a girl. 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. He, over a period of time, went back to living as a boy, started taking male hormones, eventually, when it became feasible, did have reconstruction surgery. He married a woman, adopted her children, you know, began living life as a man.

But meanwhile, Dr. Money, who had really liked the idea of performing this - basically, performing this experiment on this kid because he was an identical twin, so you basically had a subject and a control. You know, you were raising one as a girl, one as a boy. And he had written a number of studies saying that this experiment had been a huge success.

GROSS: So how did that affect the medical literature about gender surgery, performing gender surgery on infants?

COHEN: Yeah, 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, like, test case. But that misinterpretation - and I'm being generous because that false interpretation spread fairly widely. And this case was used as a justification for sex on intersex infants and children.

GROSS: Until it was debunked by a Canadian psychiatrist who knew the truth. But initially his papers were rejected. But what's the state of Money's reputation now and of his findings that this kind of surgery was a big success?

COHEN: So Dr. Money's study was ultimately debunked in the late '90s. It got - the debunking got a fair amount of attention. But for a variety of reasons, a lot of them being that this case was initially anonymous, the debunking never quite spread as widely as the initial bunking. Surgeries on intersex infants continued even while this foundational case had been debunked.

GROSS: And we should mention that David, this twin, died by suicide - gunshot in 2004. He was in his late 30s. Did you ever talk to his twin, Brian?

COHEN: So we don't mention this very sad fact in the film, but David's twin brother also died. He died of a drug overdose, actually shortly before David did. So both of the twins, as well as their parents, are now deceased.

GROSS: Oh. You have footage from the original "Dateline" interview, and David just looks so traumatized. It almost looks like he's in a horror movie and just saw the monster or the axe murderer.

COHEN: Yes. David's pain is visible on his face throughout that interview. And, I guess, you know, part of what propelled me to make this film about modern-day intersex people was looking through the field tapes of those original stories - not what ended up in the "Dateline" piece, which was, you know, quite specifically about that one case and David's incredible story. But looking through the field tapes was a moment that we include in the film where David says - he's being asked by Keith Morrison, the NBC correspondent, you know, why did you decide to come out and talk publicly about your very painful life story?

And David says it's because he understands that his case was used as a justification for surgery on intersex infants and children, and he felt it was important to stop that. And he thought that the best way to do that would be for him to come forward. And hearing him say those words, you know, some years now after his suicide felt really poignant and powerful and kind of led me to looking in a - sort of jumping ahead and looking at what's going on with the intersex rights movement of today and finding out that quite a lot is going on.

GROSS: Well, let me reintroduce you both. My guests are Alicia Roth Weigel, one of three intersex people profiled in the new documentary "Every Body," and the film's director, Julie Cohen. We'll be right back after a break. This is FRESH AIR.

(SOUNDBITE OF ANTONIO SANCHEZ, BRAD MEHLDAU AND MATT BREWER'S "NAR-THIS")

GROSS: This is FRESH AIR. Let's get back to my interview with Alicia Roth Weigel, one of three intersex people profiled in the new documentary "Every Body." Also with us is the film's director, Julie Cohen. Intersex people were born with anatomical and/or chromosomal variations, some of which are typically defined as male, others defined as female.

Alicia, you work with health care providers on appropriate health care for intersex people 'cause you say, once you turn 18, there are no doctors who understand intersex bodies. So why is that that only pediatricians understand intersex bodies, and what are you trying to change? Like, what are the special needs of people who are intersex in terms of medical needs?

WEIGEL: Yeah. So if you think about it, because there was this prevalence in the medical community that said, we'll do this surgery, and then they'll be fixed, and everything's fine, the only doctors that they needed were pediatricians 'cause that's when they were doing these surgeries. And then they all assumed that we were fixed, and everything would be OK. Now we're realizing that a huge swath of our population is ending up with osteoporosis, oftentimes because of these surgeries, and inadequate hormone therapy because of the lack of data and the lack of standards of care for our community.

And so I actually have been working with President Biden's administration, and he included in his Pride month executive order of last year, of 2022 - as part of that historic executive order that did everything from banning conversion therapy to addressing homelessness rates in the LGBTQIA youth communities, he also included a mandate for a public health report on health care inequities faced by intersex people. And they have completed that report over the course of a year, and they will be releasing it at some point later this summer.

GROSS: Alicia, the expression now is LGBTQIA. So it's lesbian, gay, bisexual, trans, queer, I for intersex and A for asexual. In grouping all those groups together under one umbrella, what do you think are the strengths of doing that, and do you think that there's any downside to grouping sexual orientation and gender fluidity under the same umbrella? You know, what are the pros and, if any, the cons?

WEIGEL: So the pros is just that we share so many common experiences. Just like people who grow up gay grow up, often, feeling ashamed simply for existing or might have undergone conversion therapy, whereas intersex kids also undergo conversion therapy, just using surgeons and scalpels instead of electro shocks. We also hold a lot in common with the trans community in that we often have had surgeries that change our body's gender presentation. And oftentimes, we have to take hormone replacement therapy, like I will my entire life because of the surgery that I underwent.

So there's so much natural overlap and allyship between our experience that I think it makes total sense to include us in that community. Just like there are some gay people who are closeted and not out, there are some intersex people who, I think, also don't consider themselves part of the LGBTQIA+ community. And maybe it's because, you know, they are straight in terms of their sexuality. Or their gender - the choice of their gender was not wrong. But for me, including us as part of that community, it helps all of those other letters in the acronym feel compelled to stand up for us.

Just like the gay community was so vital in trans folks finally getting a platform to be able to fight for their needs, we are now asking on all of our brothers, sisters and comrades in the broader queer and trans community to now fight for us, too. Because just like I showed up to help kill the bathroom bill even though it wouldn't have necessarily affected me - it already says female on my birth certificate, and I pee in the women's room - I was there to really help my trans friends that day. We really hope that our gay and queer and trans friends will stick up for us as well, understanding that all of our liberation is intricately bound up in one another's progress.

GROSS: It seems that one of the reasons why Republicans are targeting trans people right now and using the kind of anti-trans position to rally the base for the election is because you can't really target gay people to the extent that conservatives used to target gay people because everybody knows somebody who's gay - family, friend, neighbor, colleague at work. And so it's just - it's much harder - I'm not saying it's no longer done, but it's more difficult now to demonize gay people, so much easier to demonize trans people and make them the target and the rallying point. Are you feeling that? Because intersex, what am I - what can I say? I mean, intersex isn't even on the agenda yet, but, you know, it might be soon.

WEIGEL: Yeah. 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, when the other side needs to do their homework to protect us from those who seek to harm us.

GROSS: So they're actively targeting intersex people by writing them into the legislation?

WEIGEL: Yes, absolutely. And, you know, by - we saw Tucker Carlson, for example. There's a snippet of this in the "Every Body" film, where he's like, intersex, what the heck is that? And so a lot of them, either they're targeting us through legislation or they're trying to smear us as some weird, newfangled group, when we have existed as long as time. Intersex people are included in mythology, in even religion, different religious groups, in tails as old as time.

And actually, in many Indigenous communities around the world, we were revered as seers, as healers. We exist in a liminal space in terms of our bodies. And we were seen as also understanding - kind of breaking the boundaries between the Earth and heaven or between these different realms and having a greater perspective on humanity. It's only in recent times of colonization where being gay or being trans became pathologized. And that's the same exact story as intersex existence as well.

GROSS: Well, Alicia, thank you so much for talking with us. Julie, thank you so much for talking with us. And congratulations on the film.

WEIGEL: Thank you.

COHEN: Thank you so much for having me, Terry.

GROSS: Alicia Roth Weigel is one of three intersex people profiled in the new documentary "Every Body." Julie Cohen is the director of the film. Along with Betsy West, Cohen co-directed documentaries about Ruth Bader Ginsburg, Gabby Giffords and Julia Child. Tomorrow on FRESH AIR, we'll talk about the Supreme Court term that just wrapped up with Adam Liptak, who covers the court for The New York Times. He says the blockbuster conservative decisions on affirmative action, gay rights and student loans are further indication that the court is receptive to the conservative movement's legal agenda. But the story of this term is more complicated than the previous term. I hope you'll join us.

To keep up with what's on the show and get highlights of our interviews, follow us on Instagram at @nprfreshair. FRESH AIR's cohost is Tonya Mosley. I'm Terry Gross.

(SOUNDBITE OF BRAD MEHLDAU TRIO'S "HAPPY TUNE")

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