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Brian Lehrer: It's the Brian Lehrer Show on WNYC. Good morning, everyone. Before we start this next segment, I'll give you a brief language advisory. We'll be discussing a new documentary and the issues it raises about people who are intersex, and it's possible that we can't really do that very well without mentioning various gender-related body parts. Now, these are words that we are allowed to say on the radio. I'm just mentioning it in case some of you or anyone you're listening with are sensitive to that language. There you go.

Having said that, though, I think this will be a very interesting as well as important conversation. After all, there's nothing actually dirty about body parts, so I'd say it's worth sticking around. Many people don't even know what the word intersex means. Maybe you know it's the I in LGBTQIA. This documentary called Everybody explains it through several people's stories.

Speaker 1: We live in a society that is so binary. As an intersex person, where do I fit?

Brian Lehrer: This isn't just Intersex 101. It's also very much a political film because it focuses on a movement that so many other people don't know about to end surgeries that often are performed on intersex kids without their knowledge or consent to try to give them bodies that are more like one conventional gender or the other, but that often leave them physically and emotionally scarred. Texas and New York are the main battlegrounds the film focuses on on the policy level, and even a specific doctor they name and protest in the film at New York's Cornell Wild Medical Center.

With me now are the director of Every Body, Academy Award-nominated filmmaker, Julie Cohen. You may know her from her Ruth Bader Ginsburg documentary, RBG, or the documentaries Julia and Gabby Giffords Won't Back Down. And one of the three main subjects of the film, Sean Saifa Wall, who started life on the Grand Concourse in the Bronx. We know that because Saifa's birth certificate is in the film. Saifa now lives in England. Saifa welcome, and Julie welcome to WNYC. Thank you both for coming on today.

Julie Cohen: Great to be here.

Sean Saifa Wall: Yes, thank you so much. Shout out to the Grand Concourse.

Brian Lehrer: Julie, give us the basics for listeners who don't know about this movie yet. What led you to make this particular documentary?

Julie Cohen: Well, it was really the discovery of this pretty incredible movement that's going on of Saifa and some of his fellow activists really trying to educate the public about what it means to be intersex, that it's okay and not a shame and something that should be kept a secret to be intersex, and how medical care and our whole society can be changed in a way that makes it a more intersex-friendly planet to live on. I came to the story through a historical piece that's in the middle of the film, but it was really seeing what's going on today that made me think this is an incredible story to tell.

Brian Lehrer: Saifa, would you define intersex and what it meant in your case?

Sean Saifa Wall: Sure. The way I think about intersex is that it's all about sex characteristics. We all have them. When I talk about sex characteristics, I'm talking about hormones, chromosomes, genitals, and reproductive organs that are considered by the medical establishment to be atypical for males and females. Unfortunately, people with intersex variations, especially if they're identified at birth, are subject to really harmful medical interventions. What was the second part of your question?

Brian Lehrer: Well, just to tell your own story, to the extent that you're comfortable with it.

Sean Saifa Wall: Woo, how much time do you have? I think for me, what feels most important to relate is that I am one of now, probably there's five of us living, but one of eight people in my family with a particular variation known as Androgen insensitivity syndrome. Because of shame and silence and secrecy, I couldn't talk about this with my other family members. You would think that because this is so common in my family, that I would have a lot of support, and I didn't.

For me, what sort of fuels my activism is that I was subject to harmful medical interventions as a 13-year-old. I was not sort of properly informed about what was happening with my body. I was not given the options.

I wasn't given any options about what I wanted to do with my body. I feel like this surgery was meant to sort of put me on this course of being a heterosexual woman. I identify now as male, and I'm not heterosexual. I think it was only, like, chance luck that I was not subject to very invasive medical surgery, which would have reduced the size of my phallus and would have created a vagina. Even though my testes were removed, my undescended testes, I'm glad that I wasn't subject to genital surgery, which has harmed so many people.

I think when you hear the stories of people who have had multiple surgeries on their genitals, it's devastating, and it's heartbreaking. For me, it's just like I am motivated by people not having to suffer like that.

Brian Lehrer: In the film, you show very specific medical documents from when you were born. I don't know if it was your birth certificate, per se, or an accompanying document that first lists your gender as ambiguous, and you can see in the film, a lot of people probably don't even know that this exists. There were three boxes male, female, or ambiguous, and they check the ambiguous box, and then we can see that that's crossed out, and then they check the female box for you. Then there's a doctor's note in the record saying they think it's in your psychosexual interest to give you surgery. I think it would be instructive for our listeners if you're comfortable explaining what your understanding is today of what that all was about. Why did they think you were ambiguous and then decide you were female, and what did they mean by your psychosexual adjustment?

Sean Saifa Wall: I think what you asked, it's a brilliant question. I think it's very layered so I think I'm going to try to answer it the best way that I can. I want to draw upon Suzanne Kessler. She wrote Lessons from the Intersex, and she said, basically, these surgeries are done not for the safety of the child, but more so to soothe the anxiety of the parents, and I think that has been echoed many times and in many different ways.

Brian Lehrer: That was in the document, too. The doctor actually made a note, this is as I saw it in the film, that it was to help the parents. I don't remember the exact words. Obviously, you know them.

Julie Cohen: Emotional well-being of the parents.

Brian Lehrer: Thank you, Julie. Yes, the emotional well being of the Parents. Go ahead, Saifa.

Sean Saifa Wall: I think we have to talk that these surgeries are done not so much for the child, but it's actually to really soothe the anxieties of the parents and society. We have so much anxiety around gender. We have so much anxiety around sexual orientation, which is actually fueling a lot of the sort of conservative rhetoric that exists nowadays, which is why trans children are being targeted, because conservatives have been able to hone in on the anxieties of parents who are concerned about their children's eventual gender, who are concerned about their children's sexual orientation. We have these anxieties as a society which really facilitate these surgeries.

I think, for me, in displaying my medical records, which are historical documents-- I was born in 1978. These are documents that are almost 50 years old, but what's sad to me is that these practices are still happening. I know that because I've been contacted by mothers recently, as recent as a year ago, who are literally being pressured to do surgeries on their children.

When we're talking about just to make it more real, is that people who have been subject to these surgeries in infancy and childhood are literally living with the scars on their genitals. They literally can feel the scar tissue. It makes me want to ask why are we continuing to do these surgeries that we know are harmful? For the sake of what? For the sake of why? For me, it's very clear and it's evident that we are very committed to upholding a gender binary. That gender binary, it's something that medicine holds onto very dearly.

I think it's really interesting that Julie brought in the story of Dr. Money because he offered away for clinicians, for urologists, for pediatric surgeons, for endocrinologists to actually think or actually- I put "solve" in quotes- to "solve" this issue of intersex bodies. These practices have been going on since the 1950s. We have to be clear that basically these surgeries are meant to reinforce heterosexuality, and they're meant to reinforce the gender binary.

Brian Lehrer: Let me take a step back, and in a minute I'm going to invite the director, Julie Cohen, to talk about the doctor who you mentioned, Dr. Money, Dr. John Money, and his role in the history of this, which is documented in the film. First, we'll play a very short clip from the documentary. Our guests, Saifa Wall, in an exchange with the documentaries to other subjects who are intersex, River Gallo and Alicia Roth Weigel. Saifa speaks first, then River, then Alicia.

Sean Saifa Wall: Wall: They told my mom, "You have a child that we feel is abnormal,"

River Gallo: "And his 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.

Brian Lehrer: Just to give listeners a little more context, one of the other three there, Alicia, says that she was born with a vagina but with male XY chromosomes, and no uterus, and internal testes rather than ovaries. That's another example of how an intersex person might be born.

Julie, Dr. John Money, he became the authority on the medical treatment of intersex people, as Saifa was just stating. Tell us about Dr. John Money.

Julie Cohen: Dr. John Money was a psychologist and sex researcher at Johns Hopkins for many years. He was particularly interested in the treatment of intersex babies and children and the really unusual role that he plays in this story. After having studied this issue for a while, he actually came across and guided a case of twin boys, not intersex boys, the Reimer twins. One of them had his penis injured badly in a circumcision as a baby.

Dr. Money guided this case and told the parents the right thing to do, and then brought the kids down to Baltimore for surgery where basically this baby boy who had lost his penis had surgery and then a whole psychosocial treatment program to turn him into a girl. Gave him a girl's name, Brenda, made him wear dresses, told him never to tell his secret. They castrated him. They did some further surgeries and were planning to build a vagina, give the kid hormones, female hormones. The whole idea was never tell David Reimer, then Brenda Reimer, anything about their own medical histories.

Dr. Money was thinking, "This is going to be a great test of my theory that you can do surgeries on intersex babies and make them in effect either gender." They usually went with girl because, surgically, that was easier. The euphemistic term that they use is easier to dig a hole than build a pole. It's a little cringy to say it, but it makes the idea fairly clear.

Because this young baby happened to be an identical twin, it felt like it was the perfect twin study. We raise them. Dr. Money was basically reporting that this experiment had been a great success and that they were able to raise a boy as a girl.

The problem was, it was not true. This young child felt like a boy all along, wanted to play with his dad's razors, not his mom's makeup, didn't like the dolls, tried to pee standing up, and was ridiculed for that, as you can imagine, in the girl's room at school knowing nothing about his own medical history.

Ultimately, as a teenager, David's parents did tell him what had happened. The parents had been told don't tell the kid anything about this, the gold secret, and went on to basically undo the damage that had been done and to live life as a man; ultimately had phalloplasty.

The problem was the incorrect misrepresentation of this case's so-called success spread around a lot. It's one of those "a lie goes around the world before the truth can get its pants on" situations where this case just had a tremendous impact on how intersex babies and children have been treated ever since, even though the case wasn't true as reported.

Brian Lehrer: I want to invite listeners who are intersex, if we have any intersex listeners right now, to talk about anything that you feel the general public should know about your experience or the practices of medicine that should or should not be practiced around any intersex people.

One of the themes of the film or the politics that's displayed in the film, you'll see people wearing T-shirts and carrying signs at a protest that says, "End intersect surgeries." There was a measure passed by the Austin Texas City Council, I believe, a resolution saying to end medically unnecessary intersex surgery. We'll ask our guests if they think that there's a distinction there.

Listeners who are intersex or anyone who's seen the new documentary that we're talking about here called Every Body, or anyone with a comment or a question for the filmmaker, Julie Cohen, and Sean Saifa Wall, speaker researcher, activist, and one of the three intersex people who share some of their stories in the film, 212-433-WNYC, 212-433-9692.

Julie, on David Reimer in that story, you were just telling, I'm not sure that I've ever seen anybody whose face looked as haunted as David Reimer's did in this film as he was describing the experience that he went through as you described it, but also he was not intersex, right? He was-

Julie Cohen: Correct.

Brian Lehrer: -born unambiguously male. Because of the accident that disfigured him so badly during circumcision, this Dr. Money decided that the best thing for him is to just change his sex, to create a vagina and give him female hormones, and try to raise a boy as a girl. That's different than people who are born sexually ambiguous.

I'm curious how you think the two relate because I think one of the questions that the film explores is whether these things are done with malicious intent, whether these surgeries are formed, as Saifa was saying before, just to reinforce heterosexual norms, or if they really think they're helping the kids to have a sexually-livable life.

Julie Cohen: I think my answer to that-- there's two parts to that. One is the parents who are the ones signing off often on the medical treatment of their own children, as they should. I think parents are almost exclusively acting with good intent and with love and concern for their children at heart. I think the doctors as well are often acting with good intent, thinking that what they're doing is going to be helpful to the children they're treating.

The problem in my mind is so much of this is based on incorrect assumptions about what the experience of an actual child is going to be. Not enough studies of people's own experiences, more just like an incorrect assumption that the-- Even when you look at the David Reimer case, the thought of, "Well, it would be better to just tell someone nothing about their history and just make them a gender that they are not, than for them to be a boy with a badly injured penis. There's like a lot of false assumptions in that idea to unpack.

I think that's the same with the thought that like, "Oh, a child is going to be very confused if they hear that there's any ambiguity, so better to tell them nothing." Better to do surgeries that you're then not going to talk to a child about. Better, in Saifa's case, to just say like, "Oh, you're a girl," even if the child is saying, "Hey, but you know what? I'm a dude."

It's that the whole idea that like secrecy-- A lot of people are told well kids can be cruel so you don't want to tell them that there's anything different about you, versus knowing that actually openness and understanding that your body is okay and shouldn't be a shameful secret. The lack of psychological support, which seems so obviously, like what the first line of treatment for an intersex child should be, and yet so few people, at least, in generations past, had the benefit of really useful psychological support.

Brian Lehrer: Saifa, you can jump in here on any aspect of what we've been talking about that you want. Also, the protest with the signs and the movement says "End Intersex Surgery," versus the Austin, Texas resolution that says they're against non-consensual and medically unnecessary surgery on intersex children. Is there a distinction there that's important?

Sean Saifa Wall: I think with End Intersex Surgery, it was the hashtag that was used by the Intersex Justice Project, which is a project that I co-founded with Pidgeon Pagonis and Lionel Stephanie Long to challenge medical authority around this issue in the United States. I think, End Intersex Surgery is a real quick chant and hashtag that people can use online.

I think when you dig deeper into what it means is that it means just that. It means that we have to cease these surgeries that are medically unnecessary and that are harmful to intersex infants and young people.

Along with that, we have to provide psychosocial support to parents. We have to be honest and supportive and transparent with patients and families. I think we really have to reinforce bodily autonomy and bodily integrity in medicine and really give people thorough informed consent. I think in my case, people can be like, "Well, your mom signed this. She consented." Right?

If they would have told her that we're castrating your child, your child actually has testes, that your child is going to be dependent on hormones for the rest of their life, that they will experience emotional trauma, physical trauma, psychological trauma, if my mom would have been informed about all of these things, I doubt that she would have consented to the surgery.

The thing is that we have to be really honest, but I think there's an element, while people may have- like I said very trite cliche, the road to hell is paved with good intentions, right? People may have good intentions, but I think there's also bias that we also have to be very honest about; bias on the part of the parents, as well as medical providers.

Brian Lehrer: Let me get one or two-- Julie, go ahead.

Julie Cohen: Yes, if I can make one point, because you're trying to dig into a distinction that is real. Intersex is an umbrella term for somewhere close to 40 different medical variations. As our medical expert points out in the film, there are cases in which a surgery might be medically necessary for an infant, or a child like that, or an adult for that matter. There are medical situations that can arise from being intersex that would require surgery.

That is not at all the majority of surgeries that are done. In the majority of cases, the surgery is not medically necessary. That's what the fight is about. That's what works as a-- That obviously makes sense when you're short-handing fighting surgeries that are cosmetic only, which are quite a number of these surgeries.

Brian Lehrer: Let me get at least one call in here. Madison in Manhattan, you're on WNYC. Hello, Madison.

Madison: Hi. Thank you for taking my call. Listening to this, I actually learned a lot about this stuff back when I was studying endocrinology in college, so I'm just really glad people are discussing it at such a more broad level.

I wanted to call about this book. I don't know if you've ever heard of it. It's called Middlesex. It was published in 2002. Basically, the main character, he was born intersex but it was overlooked. I think he didn't have descended testes so he was essentially raised a girl.

Once he hit puberty, he identified as male. It was actually my first introduction into someone in an individual who was intersex as well as the complexities of their life. I don't know if a filmmaker or your guests have heard of that book and their thoughts on it.

Brian Lehrer: Saifa, you ever read Middlesex? Oh, Julie, you want to [crosstalk]

Sean Saifa Wall: Yes, I did read Middlesex.

Brian Lehrer: Yes, go ahead, Saifa. Curious how you reacted to it.

Sean Saifa Wall: Yes, I think it was a brilliantly written book. Yes, but I really don't like Jeffrey Eugenides attitude toward the intersex community. I feel like he almost seemed like, oh, I was divinely inspired to write this book. There've been at least a couple of people who've said that that's my story, right? I think it's just like, I think that's like reinforcing the myth of intersex people, I don't know, being almost mythological because it has like roots in like Greece, this character has 5 alpha reductase sufficiency.

For me, reading it as a young person, it was very compelling. For a lot of young people reading it at that time, it was very compelling. It's a very compelling book, but I think it's just like, how can we have these narratives that actually include intersex people as opposed to excluding them, which Jeffrey Eugenides did.

Brian Lehrer: As we start to run out of time, I want to note at least one other political aspect, Saifa, one of your colleagues in the film, Alicia, says something like this about Texas politicians, and she's an activist in Texas. She says they want to prohibit trans kids from having surgeries they want and force intersex kids to have surgeries they don't want. I'm paraphrasing from memory, but does that ring true to you? If so, why do you think they would do that?

Sean Saifa Wall: Again, in our society, gender conformity and heterosexuality is very compelling. Because of it, I think we really are committed to stamping down people, bodies, and experiences that don't fit that. We're seeing that increase now. I think even when Dr. Money established his gender clinic at Johns Hopkins in Baltimore, Maryland, they were still seeing more intersex patients than they were trans patients.

For me, what that means is that this is a gatekeeping measure. It's all about reinforcing gender conformity and heterosexuality. Unfortunately, in our country right now, we are willing to risk the lives of trans young people in order to maintain gender conformity, and I think it's a crime. I think it's cruel, and I think it's a form of torture. Those are my thoughts.

Brian Lehrer: There you go. Julie, last question. How did making the film change your understanding of biological sex?

Julie Cohen: Yes, I think the process of meeting the people in the film and so many others-- I was actually at an Interconnect and Intersex Support Group annual conference over the weekend, and just hearing so many people's varying stories about their bodies was just such a powerful reminder. We don't talk about it much as we're in this whole mode of trying to draw this very strict binary mode, but there are varieties of human existence that occur in all kinds of ways, including on gender. If everyone understood that more, if a parent understood that having an intersex baby was a possibility, just that step alone would be such a huge help so that when an intersex baby is born, it didn't become a medical crisis that everyone's first thought is like, "Oh, no, this is something that has to be fixed instantly," rather than like, "Wait, is there a medical, is there going to be a health problem, or is this just a variation, not what I was expecting," but that a child could live with happy, health, sexual, and otherwise. Just the understanding that there's more variety, to me, seems like it would be a great thing.

Brian Lehrer: Academy Award-nominated filmmaker, Julie Cohen, director of the film Every Body, and Sean Saifa Wall, speaker, researcher, activist, and one of three intersex people who share some of their stories in the film. Congratulations to both of you on the documentary, and thank you so much for joining us.

Sean Saifa Wall: Thank you so much for having us.

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