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Documentary 'Every Body' centers the lives and activism of intersex people

JUANA SUMMERS, HOST:

Since the day he was born, Sean Saifa Wall's identity has been under a microscope.

(SOUNDBITE OF DOCUMENTARY, "EVERY BODY")

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

SUMMERS: Wall is one of three intersex activists featured in director Julie Cohen's new documentary, called "Every Body." It looks at the lives and treatment of people whose bodies don't fit into the male-female sex binary. Here's a clip from the film of Wall talking with River Gallo and Alicia Roth Weigel.

(SOUNDBITE OF DOCUMENTARY, "EVERY BODY")

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.

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

AILSA CHANG, HOST:

Well, I'm joined now by Sean Saifa Wall and Julie Cohen. Welcome to both of you.

WALL: Thank you.

JULIE COHEN: Great to be here.

CHANG: So, Saifa, I want to start with you because I think there might be a lot of people who don't totally understand what the word intersex actually means. How would you define it?

WALL: Yeah. So I like to think of intersex as sex characteristics. And, you know, when I say sex characteristics, I mean hormones, like testosterone or estrogen, chromosomes, like XX, XY, X, XXY, internal organs like ovaries, testes, ovotestes and external organs like penis, vagina. So we all have sex characteristics, but people with variations in their sex characteristics are often targeted by the medical establishment and by practitioners for what sometimes are very harmful medical interventions.

CHANG: Right, and we're going to talk about that. But, Julie, what led you to make this documentary about the lives of intersex people?

COHEN: Yeah. Well, you know, taking a look at the intersex activist movement right now, this is just a blooming, blossoming movement of activists. It's so due to get attention and to - you know, for us all to be considering the things that they're fighting for.

CHANG: Well, Saifa, I want to return to you because I want to hear more about your story. You were born and raised in the Bronx. At what moment in your life did you start to fully understand that you were intersex?

WALL: So although I was, you know, born with a small phallus and undescended testes, I was assigned female at birth. And they were hoping that my mom would do really invasive medical surgery to sort of align my body with sort of social expectations of female, right? And even though they had done the surgery, I still didn't necessarily feel more like a girl. I didn't fit in. So I went to college. And one night, I'm sort of at my student job, and I type in testicular feminization syndrome. And then this updated term, androgen insensitivity syndrome, came up. And I sort of looked at the characteristics of AIS, and I was literally in shock because I was like, that's me. That's my body. And all of the doctors who I had spoken to or interacted with up until that point did not tell me the truth about my body.

CHANG: Can you tell us when you were born how the doctor advised your mother?

WALL: So when I was born, they made the recommendation to do a gonadectomy, but they also wanted to do genital surgery. And the pediatric endocrinology department at Columbia Presbyterian literally hounded my mom for two weeks wanting to do surgery. And just something about it didn't feel right to my mom, and she's like, why are they so persistent about doing the surgery? And so my mom just raised me just to be me.

CHANG: Well, eventually, your mother did consent to surgery because she was told falsely by these doctors that your gonads were cancerous.

WALL: Yeah. So when I was around 11 or 12, when I went to the doctor, he was just like, this surgery should have been done in infancy. And then he also told my moms, these gonads are cancerous, and they have to be removed. And when my mom heard cancer, she consented to the procedure being done.

CHANG: One of the most surprising things I learned in this documentary is that starting in, like, the 1960s, there was really only one voice, one authority shaping people's understanding of what it meant to be intersex, at least in the Western world. And that, quote-unquote, "authority" was Dr. John Money. Julie, can you tell us a little bit about Dr. Money's role in shaping not only just the medical community's understanding but the whole public's understanding of intersex people?

COHEN: Yeah. Dr. Money was a psychologist and sex researcher at Johns Hopkins. He had a theory that a child's gender was malleable until age 2 1/2 or 3 and claimed that he had proved this theory with a case of two twin boys, one of whom was badly injured in a failed circumcision. The baby, under Dr. Money's direction, was raised as a girl and castrated, and Dr. Money did a study in which Money claimed that the boy was successfully raised as a girl. That wasn't true, but the study spread all around the country and then was picked up on by all kinds of journals and medical textbooks. That study was debunked, but the debunking didn't spread widely enough, and there are still hospitals in the U.S. where surgeries are done based on this unproven and, in fact, debunked science.

CHANG: Right. This study perpetuated the practice of performing nonconsensual procedures...

COHEN: Right.

CHANG: ...On other children.

COHEN: Right.

CHANG: Saifa, we saw in this documentary that it wasn't only you. Like, Alicia and River all had nonconsensual surgeries performed to, quote-unquote, "correct" their anatomy to align more closely with being binary. How common is that experience among intersex people, to have these non-consensual procedures done on them?

WALL: You know, I think intersex experiences are not monolithic. I think for a long time, at least in the U.S., the people who have been most vocal are the people who have been harmed. But that does not represent the breadth of experiences of people born with intersex variations.

CHANG: How did understanding that you are intersex - how did that affect your own understanding of your gender identity?

WALL: Yeah. I think for me, it wasn't a question of, like, gender identity. I think probably what sort of switched something on for me was when I was sort of 24, I was living in the San Francisco Bay Area. And, you know, I had a friend at the time who was female to male transgender, and he asked me a question. He was like, can you see yourself aging as an older woman? And I was like, no. And I think that was sort of the start of me sort of being like, well, what do I need to do to sort of feel more of myself? And I think that's when I started to seek out hormones and surgery that I would do for myself - right? - to affirm myself that sort of confirmed how I felt inside.

CHANG: That was activist Sean Saifa Wall and Julie Cohen, director of the new documentary called "Every Body." It comes out today. Thank you to both of you so much for this conversation.

WALL: Thank you so much, Ailsa.

COHEN: Thanks, Ailsa.

(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.

NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.

Jonaki Mehta
Jonaki Mehta is a producer for All Things Considered. Before ATC, she worked at Neon Hum Media where she produced a documentary series and talk show. Prior to that, Mehta was a producer at Member station KPCC and director/associate producer at Marketplace Morning Report, where she helped shape the morning's business news.
Mallory Yu