New Film Explores Intersex Community’s Fight for Recognition, Bodily Autonomy

June is Pride Month, a time to celebrate the LGBTQIA community, and today we look at those represented by the “I” which stands for “intersex.” In a broadcast exclusive, we are joined by the filmmaker and three stars of a new documentary, Every Body, which follows their work as intersex activists who share childhoods marked by shame, secrecy and nonconsensual surgeries. We speak with actor and screenwriter River Gallo, political consultant Alicia Roth Weigel, scholar Sean Saifa Wall and Academy Award-nominated and Emmy-winning director Julie Cohen, who says she was able to document “a movement that’s in the midst of truly blossoming.” Roth Weigel adds, “There is no one way to look intersex. There is no one way to be intersex,” emphasizing that the movement for informed consent and body autonomy is broad and intersectional. The film will be released in theaters on June 30.

TRANSCRIPT

This is a rush transcript. Copy may not be in its final form.

AMY GOODMAN: Bruce Springsteen’s “Born to Run,” performed by Amy McDonald. The song is featured in Every Body, the film we’re talking about today. This is Democracy Now!, democracynow.org, The War and Peace Report. I’m Amy Goodman.

June is Pride Month, a time to celebrate the LGBTQIA community. Today, we look at those represented by the “I,” which stands for “intersex.” In a broadcast exclusive, we’re joined by the filmmaker and three stars of this revelatory new documentary that explores their lives. It’s called Every Body. This is the trailer, which opens with scenes from gender reveal parties of expectant parents.

PARTY GOERS: Three, two, one! Woo!

ALICIA ROTH WEIGEL: Society generally considers that biological sex is cut and dry. Actually, it’s not cut and dry. We don’t fall neatly into that male-female box. I was born intersex. And although I was born with a vagina, I was also born with internal testes.

SEAN SAIFA WALL: We live in a society that’s so binary. So, as an intersex person, where do I fit?

UNIDENTIFIED: The definition of “intersex” is any variation in a person’s sex characteristics.

SEAN SAIFA WALL: They told my mom, “You have a child that we feel is abnormal.”

RIVER GALLO: And this body was a problem that needed to be fixed.

SEAN SAIFA WALL: Fixed.

ALICIA ROTH WEIGEL: Fixed. And that I should never tell anyone about it.

JOHN MONEY: It’s therapeutically highly desirable to have them surgically corrected at an early age.

SEAN SAIFA WALL: I just remember like a lot of pain.

ALICIA ROTH WEIGEL: In most cases, there is absolutely no evidence to suggest that surgery is medically necessary.

SEAN SAIFA WALL: The doctor changed the course of my life. I did not consent to that surgery.

UNIDENTIFIED: I had to tell the world what had happened.

SEAN SAIFA WALL: We’ve just been silent about this for so long.

ALICIA ROTH WEIGEL: I’m going to come out today. I’m going to tell the Texas Senate I was born with balls.

UNIDENTIFIED: I think we’re at the cusp of something cool.

ALICIA ROTH WEIGEL: Our goal is to pass a bill to condemn these medically unnecessary surgeries.

RIVER GALLO: A huge revolution starting right now.

PROTESTERS: Ban intersex surgeries!

RIVER GALLO: Just existing as an intersex person is grounds for celebration in a whole world that doesn’t see us. But you know what?

INTERSEX PEOPLE: I am intersex. Intersex.

RIVER GALLO: We are here now.

AMY GOODMAN: That’s the trailer for Every Body. The documentary tells the stories of three people who have become intersex activists after childhoods marked by shame, secrecy and nonconsensual surgeries. It’s set to hit theaters nationwide June 30th, released by Focus Features.

Today, we’re joined by its director and three people it features: actor and screenwriter River Gallo, political consultant Alicia Roth Weigel and scholar Sean Saifa Wall. They’re all working for greater understanding of the intersex community and to end unnecessary surgeries. Every Body is produced with NBC News Studios and just premiered at the Tribeca Film Festival here in New York. It’s directed by Julie Cohen, the Academy Award-nominated, Emmy-winning director and producer of RBG, along with Betsy West, as well as the Oscar-shortlisted Julia and the Peabody-winning My Name Is Pauli Murray. Julie is past producer for Dateline NBC.

We welcome you all to Democracy Now! I mean, I don’t think I’ve seen a premiere like this. Afterwards, I was afraid, especially from the balcony, that people would fall over as they leapt to their feet, weeping, laughing, clapping. I mean, the response was overwhelming. Julie, I was wondering if we could start with you to talk about why you made this film. Talk about your choice of the people you’ve interviewed and the subject matter.

JULIE COHEN: Yeah. This film kind of started off with an archival story from the NBC News archives that really does a bunch to explain why intersex people have been medically treated — and I’d add “mistreated” — in the way they have. That led me pretty quickly to looking into what’s going on with the modern movement for intersex rights, a movement, frankly, that I was unfamiliar with in starting.

And what I came across, you know, as someone who’s actually looked at a fair number of activist movements, is a movement that’s in the midst of truly blossoming. After childhoods, youths, young adulthoods often of being either explicitly told or just getting a vibe that, you know, my body is something I shouldn’t be talking publicly about, a group of very thoughtful and brave young people, including Saifa, Alicia and River, have decided to come forward, dispense with all this secrecy shame stuff, and embrace their stories and their movement with pride. It’s like this blooming movement that just hasn’t gotten the media coverage that I think it deserves and the attention of the public.

And once you see what people are up to, it’s like — it’s pretty astounding, and it’s kind of — it’s kind of like — I was inspired just going to some of the actions. And as you mentioned, you know, yesterday’s premiere, there were so many intersex people in the audience, and I think just having the experience of after being told your whole life this is something you should be ashamed of, to have it presented that, like, no, there’s something to be really proud of and something really beautiful about coming forward as an intersex person, I just think had a real impact on people.

AMY GOODMAN: Well, River, Alicia and Saifa, it’s amazing to have you all together, as you were in Julie’s film, Every Body, to talk today. I wanted to start with Saifa. Saifa, define “intersex” for us. You know, people often say ”LGBTQIA.” They may not know what that “I” stands for or what it means.

SEAN SAIFA WALL: Right. Thank you. Well, good morning, Amy. I’m so glad to be here.

When we talk about intersex, we’re talking about sex characteristics. And I think it’s just really important to know that everyone has sex characteristics. And when I’m talking about sex characteristics, I’m talking about hormones, chromosomes, reproductive organs, that are considered by the medical establishment to be atypical for what is considered “normal” — and I put that in quotes — human development. But I think what I really want to underscore is that everyone has sex characteristics, but people who have some kind of difference or variation are usually harmed because of it.

AMY GOODMAN: So, if you would, can you tell us your life story? So, take us on the medical journey that —

SEAN SAIFA WALL: How much time do you have?

AMY GOODMAN: Take us on the life journey that you want us to understand.

SEAN SAIFA WALL: Mmm, that’s such a beautiful question, Amy. You know, I think I always ground my story in the experience of the people who came before me. I ground that story in the experience of my grandmother, who was a domestic worker in Wilmington, North Carolina, who had three children during Jim Crow with androgen insensitivity syndrome. It is her resilience — she’s passed, but it’s her resilience, her living, the living of my uncles, who also had the same variation I have. I can’t even imagine what they have lived through. But spiritually, I stand on their shoulders.

And so, for me, I cannot tell my story without it being grounded in the experience of the South, without the experience of North Carolina, without the sort of migration of my mother and many other people from the South to the North, fleeing racial terror. And so, for me, I think my passion and my dedication to this issue is not only to heal myself, but to heal the generations that will come after me and the generations that have come before me.

AMY GOODMAN: You grew up in the Bronx. Can you talk about what the doctors told your mother when you were born?

SEAN SAIFA WALL: So, my mom had two children before me who also had AIS. And they were born during the ’60s, where the protocol was to sort of remove what they considered gonads, but which were really undescended testes. And so, those surgeries were done in infancy.

When I was born, they also wanted to do that. And this was at Columbia Presbyterian here in New York City. And my mom said no, you know, because something didn’t feel right to her. And, you know, she kept saying no. And the only reason why she consented to surgery is that the doctor at the time told her that these “gonads” — and they put those in quotes, too — these “gonads” were cancerous. And because of the risk of cancer in my family, she consented.

AMY GOODMAN: What mother wouldn’t?

SEAN SAIFA WALL: And it wasn’t — of course. Of course. You know? But what I would say is that it wasn’t thorough informed consent.

AMY GOODMAN: And it turned out, of course, you saw the records, that, in fact, you were not in any way — you did not have cancer.

SEAN SAIFA WALL: I did not. I received those records when I was 25, and I felt betrayed, I felt angry, and I think there was a whole part of my life that I was cheated out of. And what I experienced, what other people have experienced, are civil rights and human rights violations that no one should ever experience.

AMY GOODMAN: So, you were raised as a girl?

SEAN SAIFA WALL: Yes. So, on my medical records, it was noted that I had a small phallus and undescended testes. And they just made the arbitrary decision to assign me as female and raise me as a girl, but I never felt like a girl. But because my mom was super feminine, I think she was tolerant. But then, at the age of around 7, she was like, “You’re a girl.” You know? So, that’s why I really support and love trans kids, you know, which we have to support young people. When they know who they are, we have to affirm that.

And I eventually transitioned when I was 25, but testosterone didn’t do the same thing for me, in my variation, that it did for other people. And I think for me — and, you know, I give a trigger warning — I think it was a decision that I could either kill myself, and no one would know my story, but that if I decide to live, that I must fight so that other people can live, and live with dignity.

AMY GOODMAN: And when you had that operation to eradicate the cancer that you did not have, what did you understand you were going through? Were you explained at that point? How old were you?

SEAN SAIFA WALL: I was 13 years old. And I don’t — oh boy. I mean, I think the — one of the doctors who was involved with my care worked very closely with Dr. Money. They actually wrote a book together, Man & Woman, Boy & Girl. And she told me, as a young person, that I had these small ovaries and a small uterus that had to be removed, and that, eventually, I would be able to have, you know, a relationship with my husband and have children. It was a lie. It was all a lie.

And so, I didn’t really understand what was happening. It was so much happening around that time. But I think, for me, even though my body was changing in ways that I could not understand, I was OK with it. And, you know, again, if we knew what we know now, I think it would have been lovely for people to support me and really try to understand my body and be OK with it, as opposed to castrating me and subjecting me to feminizing hormones, effects that I still live with today.

AMY GOODMAN: You’re watching, listening to — or if you’re reading this after, Sean Saifa Wall.

SEAN SAIFA WALL: Thank you, Amy.

AMY GOODMAN: And Sean Saifa Wall just referred to John William Money, the American psychologist, sexologist, professor at Johns Hopkins University, known for his research on human sexual behavior and gender.

River Gallo is also in the studio, actor, screenwriter, Salvadoran American filmmaker and intersex activist. They wrote, directed and acted in the 2019 short film Ponyboi, the first film to feature an openly intersex actor playing an intersex person.

River, it was great to meet you yesterday at the premiere, to really meet you in this remarkable film, Every Body, and particularly to see your relationship with your mother. Can you share with us your life journey?

RIVER GALLO: Of course. Good morning, Amy. Thank you so much for having me and us and for opening the space to raise awareness for this really important movement that’s happening.

My life story originates in New Jersey, home of Bruce, as you played his song earlier. I grew up in a family of — my parents immigrated from El Salvador to escape the civil war in the ’80s, and wound up in New Jersey. And, you know, my childhood was pretty typical. You know, my parents were Catholic from a very poor country in Central America. And so, when I was born, it was quite a shock to them and to the rest of our family. I was born with a condition called anorchia, which means my — I had a penis, but — or, still do, but my testes were absent at birth. And the protocol was to keep that a secret for — until I was 12, actually. And then I was told that I was born without testes, and, thereafter, was put on testosterone to go through puberty, and at 16 was — I had a surgery to implant prosthetic testicles inside of my scrotum, the idea being to look like a “normal” — and I say that with air quotes — boy, man. The fallacy in all of that was the fact that later on I would identify as nonbinary and transfem, in which case these testes that were put into my body didn’t affirm my gender and actually give me gender dysphoria. And it’s something that I still live with today, a reminder that I was operated on unconsensually.

And my parents, at the time, were just listening to doctors’ orders. And, you know, they didn’t grow up with college education. And I do think that the racial component, them being Latine immigrants, was a huge factor in the fact that they were just trying to do what was best for me. The fact that I was born in a hospital was a big deal for them, because they legitimately grew up without shoes and, you know, without things that I now have and they were able to provide for me. So, I offer them a lot of compassion and grace for the decisions they made. But the medical establishment, they definitely took advantage of — my parents were really vulnerable. And like you said, my relationship with them, particularly my mother, has been one of a lot of spiritual strength, that has given me the ability to then be able to tell my story and express myself authentically in various artistic formats that I now am getting a lot of praise and recognition as a screenwriter and an actor in Hollywood.

AMY GOODMAN: Talk about two pivotal ages for you, 12 and 27.

RIVER GALLO: Twelve was the time that I found out that I was born without testes, and started testosterone replacement therapy. And essentially, my life as I knew it was completely — it was like, yeah, the sense of betrayal and the sense of, yeah, just feeling like I was lied to my whole life, was so — it unearthed a new chapter in my, like, psychology, where I realized that I really couldn’t trust anyone, not even my own parents, about the truth about who I was.

And at 27 was when I made the decision to create a short film while I was at USC, the University of Southern California, at film school, to, for the first time, talk about my experience as related to this intersex variation. At the time when I was writing that screenplay for my short film called Ponyboi, I didn’t know the term “intersex.” And so, I created this fictional character of this queer sex worker who lived in New Jersey and had this like mysterious love affair with this cowboy. And I knew that I wanted to reveal this part of my identity and put that into this character, around my variation. And so I started researching more about my variation, anorchia, and that’s when I discovered that it was a part of the broader intersex umbrella. And that’s when I discovered, actually, Alicia and Saifa, that were activists, and that there was a whole community of people talking about this, and that it was actually a human rights violation. And so, it became this revelatory moment for me, where I realized that my work as an actor and as a writer had a certain deeper weight than I could have ever imagined, because the movement was, as Julie said, just starting to blossom, and I was aware of that. And so I knew that it was — I had no choice but to incorporate that part of my identity into this character and just, yeah, take that leap of faith.

AMY GOODMAN: River, I want to play a clip from Julie’s film, Every Body, that features you.

JULIE COHEN: Do you see that you’re beautiful?

RIVER GALLO: It’s so funny, because sometimes, honestly, I won’t know what I look like, and then I look at myself in the mirror. I’m like, “Oh my god! I’m stunning.” Since coming out as intersex, I definitely feel more beautiful. And I don’t mean that just like, oh, like — like I got hot. But it was more like I got the confidence to just start showing up however I’d want to show up.

Wow! I did it! That is exciting. Drama for the gala.

AMY GOODMAN: River Gallo in the new documentary that just premiered to enormous acclaim at the Tribeca Film Festival yesterday. It’s called Every Body. And before we turn to the third person featured in this film, I want to play another clip of the film that features her, Alicia Roth Weigel. Her testimony is featured in the film, and this is the testimony from 2017 against Texas Senate Bill 3 to discriminate against transgender people and their ability to use public restrooms.

ALICIA ROTH WEIGEL: Madam Chairperson and members of the committee, thank you for your time. My name is Alicia Weigel. I’m a resident of Austin. And I’m here to humbly ask you to please vote no on Senate Bill 3 and 91.

As I mentioned, I’m a resident of Austin. I’m the director of a gender equality nonprofit, and I have XY chromosomes. So I stand here today, or sit here today, representing the “I” in ”LGBTQIA,” which stands for “intersex.” Because of a condition called complete androgen insensitivity, I was born phenotypically female on the outside with a woman’s anatomy, but with internal testes instead of ovaries. And they were subsequently removed as to not become precancerous. And so, I would like to respectfully counter a point made earlier that biological sex is cut and dry, when 2% of the global population are born with intersex conditions. That’s roughly the equivalent of that has red hair, about half the entire population of the United States, in terms equivalent numbers. And this practice of removing internal testes is now heavily contested only 27 years later, because it’s a remnant of this still-present gender ideal and wanting to normalize children from birth.

So, while I find it absurd that I have to disclose my anatomical history in front of a room of strangers, that makes me feel more compelled to do so, because, unfortunately, I’ll never be able to bear children, but I’m extremely privileged to have been born in a way that my discrepancy from the gender norm is not immediately apparent, that I don’t wear it on my sleeve. That saved me from a lot persecution up to this point. And I can tell you that I’m very much a woman. I sit before you today. And I help manage Wendy Davis’s nonprofit focused on women’s rights, because as a victim of discrimination in the workplace — I’d like to emphasize this to Senator Kolkhorst — as a survivor of sexual assault, these bind me to the common plight of what it means to be a woman. And does that mean that because of my genotypic XY chromosomes, I’ve been using the wrong bathroom my whole life? No, it doesn’t mean that. It means that a bathroom is a place where all humans, regardless of gender, engage in a common activity that, unfortunately, we have not yet evolved out of, which is going to the bathroom. So, thank you all for your time. I really appreciate it. Thank you.

AMY GOODMAN: That’s Alicia Roth Weigel testifying in 2017, before a Texas Senate committee, against the bathroom bill. There’s an excerpt of her testimony in Every Body. And as we go into that testimony in Every Body, Alicia, I mean, part of this film — I mean, it talks about the agony of secrecy and shame and nonconsensual surgery, but it’s also hilarious and joyful. And you going into that Senate hearing room, talk about the shock of many who’d, even in the politicians, hit on you before.

ALICIA ROTH WEIGEL: Yes. Living in Texas, we have a lot of old white male politicians who, unfortunately, do not always conduct themselves in a way that I would deem worthy of public office.

I landed myself in Texas in 2016 working with former Texas state Senator Wendy Davis, who became famous due to her 15-hour filibuster, that we now refer to as “the People’s filibuster,” to help kill a bill that would have restricted abortion access across the state of Texas — which we no longer have. But working with Wendy, who was well known as a feminist icon not just within the state of Texas, but worldwide, following that filibuster, I became very closely associated with Wendy, helping her lunch a nonprofit called Deeds Not Words. And despite being at least a head taller than her, people kind of came to know me as “Mini Wendy.” And we’re both blonde, feisty Texas women.

And I would frequently walk into the Capitol to testify and help move bills in the realm of sexual assault and human trafficking, which was my main focus at the time, and so I was well known in that building, again, as a young blonde woman, often frequently in the presence of much older cis white male legislators. And when they did hit on me or when they would send me emails, and at all hours of the night and stuff like that, it kind of helped me realize that I think my voice lends a different angle to our movement.

There is no one way to look intersex. There is no one way to be intersex. It is an umbrella term that encompasses a broad range of lived experiences. And I think that in a place like Texas, that is still so far behind the rest of the country and the rest of the world in terms of the way that they perceive and receive human beings in all of our beautiful diversity, unfortunately, looking the way that I do, presenting the way that I do in the world, sometimes people that are stuck in the past might hear my words with a different weight. And so, I think coming in there as someone that they had all hit on, and then being able to tell them that I actually was born with balls, I think blew some of their minds that day, and continues to blow some of their minds.

So, it was shock value on that day. But it’s also my lived experience. I am a woman. I am a proud Texas woman who is fighting for — against our high rates of maternal mortality in the state, that is fighting for body autonomy across the spectrum of all human rights, including free and fair access to abortions. And so, I think bringing the intersex movement intersectionally into the women’s movement is a really, really important fight, because if we can get half of the world’s population to understand that our fight for body autonomy is the exact same fight as a sexual assault survivor’s or someone who’s fighting for access to abortion, I think the faster that we’re going to achieve what we’re setting out to do.

AMY GOODMAN: When you took the mic at the Tribeca Film Festival yesterday, you said, “OK, I’m an activist, too, and I’ve got to make our demands.” And you’re here in New York City, protests at Weill Cornell. If you can explain why? And talk about what’s being demanded around surgery, I mean, kind of very different from the anti-trans surgery, where people are calling for, well, as you’re saying, bodily autonomy — but also what’s happening in New York City that’s being weighed right now.

ALICIA ROTH WEIGEL: Yeah. So, we actually have been making some really good headway in the policy arena. New York City was the first city to pass an ordinance that formally condemned surgeries and outlawed them in New York Health + Hospitals public health system. It also mandated a public awareness campaign for parents and doctors of intersex children, so that they can make better-informed decisions than any of our parents were able to, often at the hands of misinformation provided to them by the medical community. We were able to replicate that same ordinance in Austin, Texas. We are the second city in the U.S., the first city in the South, to replicate that ordinance. And actually, we just saw that ordinance scaled to the statewide level. New York state, the New York state Assembly, the New York state Senate, so the entire Legislature, has scaled that statewide. And so, the state of New York is going to be running a public awareness campaign to raise visibility of the existence of people like the three of us and so many others in our movement and that have yet to join our movement, which is really exciting.

And I just came from the White House two days ago. We’ve been working with the federal government, with Health and Human Services and directly with President Biden’s White House administration, to create the first-ever-of-its-kind report on the health inequities faced by our community, including nonconsensual surgeries, but also including the little-talked-about utter dearth and lack of adult healthcare for intersex individuals in the United States. I have often had to fly to the coasts to receive care at huge personal expense. That is obviously an inequity to people who cannot afford to do something like that. I have done — I have surveys and focus groups across the state of Texas, and we know that Texans are flying, quite literally, to Japan to receive healthcare. And so, beyond just the surgeries that we experience in our infancy, we can’t find doctors that have any idea how to treat our bodies. There’s a severe lack of data on what our bodies need to be healthy. There’s severe misinformation about what our bodies need to be healthy. And so, I’m very excited to be working alongside so many other activists hand in hand with President Biden’s administration to help rectify that.

AMY GOODMAN: Finally, we just have 30 seconds, but, Julie Cohen, the Oscar-nominated director, what you’re hoping to accomplish with this film, that’s out in theaters on June 30th?

JULIE COHEN: I’d say more openness, more understanding, less shame and secrecy, more pride. You know, people often talk about, like, “Oh, are you trying to, like, normalize intersex people?” That doesn’t need to be done. You’ve just heard from Alicia, River and Saifa. They are already normal. Understanding that there is a broad spectrum of what normal can be and what beauty and pride can be all about is part of what this film is all about. And I hope it’s going to prompt people to want to educate themselves more and to want to feel some pride and joy along with intersex activists, who are fighting for their rights after so long.

AMY GOODMAN: Well, certainly, pride, joy, humor, and also the reality of people’s lives featured in this new documentary, Every Body. Julie Cohen, Alicia Roth Weigel, River Gallo, Sean Saifa Wall. I’m Amy Goodman.