Imara Jones: Today I’m thrilled to be spending our entire program with Sean Saifa Wall. Saifa is Black, intersex and trans. And is a trailblazing figure in the fight for body autonomy and for freeing all of us from medicalized notions of masculine and feminine biologies. He is the co-founder of the Intersex Justice Project, a groundbreaking organization dedicated to ending intersex surgery in the United States and around the world. Saifa is also the former board president of InterACT: Advocates for Intersex Youth, which worked with the Southern Poverty Law Center to bring lawsuits to protect those who are intersex. Saifa’s work led to the first ever hospital in the United States, the Lurie Children’s Hospital of Chicago, to stop performing non-consensual intersex genital surgeries on infants, but his impact doesn’t just stop in the United States.
Saifa’s global research on intersex human rights will form the basis for an upcoming report by the Open Society Foundations. And right now Saifa is the Marie Curie Fellow at the University of Huddersfield in England, where he is examining social policy for intersex people there, and in Ireland. So it comes as no surprise that Saifa has been featured in ABC’s Nightline, BuzzFeed, and the Huffington Post, among others, and has a TED Talk. And if all of that wasn’t enough, Saifa is also a visual artist and has a dog named Justice. Saifa, thank you so much for joining me today.
Sean Saifa Wall: Yes, thank you for the invitation.
Imara Jones: Of course, of course. Um, before we get into many of the topics that we want to cover, specifically about the intersection of trans and intersex issues, which goes often unexplored and unconversed about, I wanted to just start out with your beginning, where you were born and where you grew up. You were born in the Bronx. And I’m wondering if you can just talk a little bit about your family and your childhood?
Sean Saifa Wall: I think often, you know, as an intersex activist, I think a lot of the focus is on my experience with surgery, my genitals, my sort of political beliefs, and my social justice beliefs around this issue, but I really enjoy talking about, you know, my ancestry, my lineage, because I think that’s so important, because I think that helps to create a more holistic, sort of view or perspective of who I am, you know, as an activist. So, my upbringing was chaotic.
You know, I grew up in the Bronx during the crack epidemic, the HIV/AIDS epidemic, my father died in prison, he died from HIV, which actually really politicized me around HIV at an early age, like, you know, when I was 14 years old, I was volunteering at the Gay Men’s Health Crisis in New York City. And you know, I’m the youngest of five children, now four, because my oldest sister passed away. Both of my parents are deceased. And I think it feels weird to be, you know, still, even though I’m 42, to be…to not have parents, right. And I think my relationships with my siblings, and I think what it speaks to, is just the impact of trauma, the cycles of trauma, and violence and addiction that I grew up with. And it wasn’t totally that, right, because I think if it was just addiction, and violence and trauma, I wouldn’t be here.
So I think there were windows and opportunities for laughter and for joy and for coming together. And so, you know, I think for me, when I talk about my intersex story, I talk about just my uncles, my cousins, my siblings who also have the same variation that I do. And anyone listening would be like, “Wow, that’s so cool. You have people who are just like you.” And my response is always, you know, this is a testament to the shame, the silence and a stigma that still surrounds people with intersex variations, that even in the same family, in my family, that we all share the same variation, but we couldn’t talk about it.
You know, these are the layers, right? And these are the layers that I tried to bring into my work to add the complexity because I’m not just intersex. Like I’m queer, I’m trans, I’m Black, you know, I’m living abroad. This is so many layers.
Imara Jones: I really appreciate the fact that you start in complexity because I think that that’s where people have to dwell in, in order to totally understand and embrace what it means to be intersex and how being intersex disrupts, I think in good ways, notions of, you know, biological, quote, “clarity,” close quote. And I’m wondering if you can talk a little bit about when you first knew that you were intersex? And what did that mean? I mean, you just spoke about that you were born into a family where there are other people who are intersex, but there was silence and stigma around it. So it wasn’t as if you have the support that people may naturally think that one might have. So I’m wondering, when did you learn that you were intersex? And that you may be, your body may just function differently than other people’s?
Sean Saifa Wall: I just want to do some education right quick. So intersex is sort of defined as sex characteristics that include hormones, genitals, reproductive organs, and chromosomes that are considered by the medical establishment to be atypical for males and females. And there are 40 intersex variations–40 documented intersex variations, and supposedly, which I think it’s more, but people with intersex variations comprise 1.7% of the human population, which is a lot. It’s nothing to sneeze at, you know?
Imara Jones: Almost two out of 100 people.
Sean Saifa Wall: Right, you know, like that’s, that’s lit, you know, my particular variation is androgen insensitivity syndrome, which means that when I was born, I was born with genitals that were atypical in the sense that they decided to assign me as female because my phallus wasn’t long enough, or big enough, according to the phallometer. But they also wanted to do surgery on me as a child to make my genitals appear more feminine.
Imara Jones: Can I stop you right there?
Sean Saifa Wall: Sure.
Imara Jones: So there’s something that’s called a phallometer. They, like, measuring–
Sean Saifa Wall: Correct.
Imara Jones: –they’re inspecting the genitals of babies?
Sean Saifa Wall: Yes, they are, whenever a child is born, depending on how the genitals appear at birth, if the genitals are not clearly, you know, male or female, which is so arbitrary, right? Then they sort of bust out the phallometer, and they’re just like, well, if if there’s a certain centimeter then according to this ruler, you know, less than a certain percent, then it is a clitoris, because the clitoris and the phallic tissue or similar, it’s the same, the child will be assigned as male.
But sometimes, you know, with human anatomy, there’s so much variation, because it’s not only the clitoral/phallic tissue, but it’s also just like the placement of the urethra and the labial/scrotal folds. You know, it’s, again, human beings are like flowers, and there’s so much variation. The problem is, is physicians who see this feel that intersex should exist in these two boxes, either male or female, which actually ends up causing a lot of harm to children who are born with these variations, myself included.
Imara Jones: Some person, when you were born, looked at your genitals and was like, “Okay, we think that this is…we’re not, we’re not clear. So we’re going to whip up this thing called a phallometer,” and the phallometer, according to whatever their readings are, and “readings” in quotes, said, “Okay, this looks then to be probably a female?”
Sean Saifa Wall: Correct. On my birth record it said that the genitals were atypical and they, I think they wrote ambiguous genitalia. And then they assigned me female, but then they also made the recommendation that I would come back for surgery. And my mom was like, “No.” According to my mom, before she passed, we had a conversation and she told me that literally, the pediatric endocrinology department at Columbia Presbyterian Hospital where I was born, literally hounded her for two weeks, literally called her and was like, you know, you need to bring in, you know, your baby, you need to bring in your baby.
And my mom was like, “Why are they…Why is this so important to them?” And because of who my mom was, she was like, you know, my mom, no one was gonna make her do anything she didn’t want to do. That’s where I get it from. So she was like, “No.” But it wasn’t until, like, I was 13 years old. And I was seen by a pediatrician at Columbia Presbyterian Hospital, who saw that I was developing as male. And because I was assigned female at birth, and I was starting to develop as male. It wasn’t lining up for him. And he essentially told my mother that my undescended testes were cancerous, and he recommended surgery.
Imara Jones: What is an “undescended testes?” What is that?
Sean Saifa Wall: So testicles are meant to live outside of the body, being in a scrotum, and undescended they were in my groin area. Essentially, with my particular variation, there’s a fusion of what are considered the labia, which looks like a scrotum, a small phallus and undescended testes. So essentially, I had testes. But again, there’s so much discrepancy, but just kind of like lies around how physicians sort of describe these variations to patients.
Imara Jones: Understand, okay, all right, cool. So not literally not outside the body. I’m not unfamiliar with intersex issues. But in describing how random it is, I’m floored that it seems as if someone looked at you and said that you were a female then they just marked that on your birth certificate, and then you were–and then sure, your mom just raised you as that.
And you get to a certain point where you’re developing as your body wants to develop, right, like your body is doing, is going to, wants to do what it wants to do. And someone from the medical position, I’m sorry, someone from the medical establishment, a doctor looks at that and says, “This is wrong.” And then comes up with a reason to quote “fix” it?
Sean Saifa Wall: Correct. That’s correct.
Imara Jones: Do you have the surgery they–he lied, right, said that they were cancerous, had–gave him an excuse to remove your testes. And then you have the surgery? And then what, if any, was the impact on you after that surgery?
Sean Saifa Wall: Yeah, I mean, I think the context is that they removed healthy reproductive tissue. And whether I would be able to have children or not is, I mean, now is a non-issue because my testicles are gone. But I think what would have been the best thing would be to actually monitor, if they were cancerous, which would, the solution would have been to monitor sort of the progress of any cancer that was developing. They removed my test–my testes. I like to say that I was castrated, which is what happened. And I was put on estrogen and progesterone.
Now, this is where things get really interesting, right? Because when I got my medical records, years later, the surgery happened when I was 13, I got my medical records at 25. You know, the insurance company paid for an orchiectomy, which is the removal of the testicles. And for some transgender women who want surgery, bottom surgery, that’s how it’s coded, right? It’s an orchiectomy is a removal of the testicles.
So even though I was assigned “girl,” I had testicles. Insurance paid for the surgery in 1992, at a time when transgender women and transgender people will still being denied gender affirming procedures. And I think it’s really critical to highlight that because one of the central issues in this matter is that intersex people, like I’ve said before, like many advocates have said is that intersex people are subject to these forced sex reassignment surgeries, and trans people literally have to fight, literally have died, in order to get that same care.
The surgery created a lot of dysphoria, because even though I was a little confused at the way my body was developing, I wasn’t hostile to it. I was curious about it, right? Like I was growing facial hair, and like I was I had muscles and like, I was like, “Wow, this is cool. And I’m confused, but I’m going with it,” you know, and I think with appropriate psychosocial support, I probably would have transitioned at 13 or 14, but I wasn’t given that chance.
Imara Jones: So can you talk about, as you’ve already begun to unpack, for you, the intersection of being intersex and trans.
It’s interesting, because in some respects, it seems as if it was–and if I’m being wrong here, let me know or saying it incorrectly let me know–but it seems as if in some ways, it was just a restoration in the way that your body was trying to work in the first place. You know, you weren’t actually transitioning, you were restoring the way that your body is supposed to work in a way that it was taken from you. So I’m wondering if you can talk for you about where trans and intersex identities form up for you in this in your development as a person.
Sean Saifa Wall: I want to preface by saying that the sort of intersection of being intersex and trans is special, it’s a special one. When I had dinner with my comrade and friend, back in 2005, he said that queer intersex people make up a fraction of the overall intersex community of people with intersex variations.
When I decided to transition I had so much love and support from my FTM brothers, you know, many of us had lived as butches and had, you know, butch, dykes, studs, whatever, and then just decided that we wanted something different. We wanted to sort of move further along in our masculinity. And I think having that camaraderie, having that support really endeared me to the trans community.
Imara Jones: Can you talk a little bit about when you realized that what was done to you was wrong, and when you decided to do something about it, and I’m wondering if rage had a part of it, as well?
Sean Saifa Wall: Of course, you know, rage definitely figured into what happened. I think rage, rage and love, fuels my activism. Anger at what was done to my body without informed consent, and love for a future generation to not experience this harm. I think there were two distinct moments that I can remember that really contributed to my activism. One, I remember one night, it was my sophomore year in college, and I did a Yahoo search, because that was before Google, so I’m gonna date myself.
And you know, I did a Yahoo search. And before AIS was referred to as Androgen Insensitivity Syndrome. It used to be referred to as Testicular Feminization Syndrome. So I put that in the search bar, and the characteristics of AIS came up and I literally sat there dumbfounded, I was in shock. And I was like, “This is, this is my body.” And then I got angry. Because everything that the doctors had told me when I was younger, it wasn’t true. They lied to me. I don’t like being lied to. And I think at that moment, in the fall of 1999, that’s when that was sort of like the seedling. Fast forwarding to 2005, early 2005. I was working as a trans health educator at UCSF–University of California, San Francisco, I was working on The Trans Project. And The Trans Project was a research project, doing sort of data collection of trans communities in the San Francisco Bay Area. At the time I read this book As Nature Made Him by John Colapinto. And in that book, he mentions Dr. Anke Ehrhardt and Dr. John Money, both created the protocols that would affect intersex children.
Basically, they argue that nurture trumps nature, regardless of how a child is born, that gender is something that can actually be nurtured, which is great for trans communities. But it was harmful because their experimentation was on intersex children and because John Money was really obsessed with the gender of intersex children with atypical genitals. So these surgeries, these early surgeries started like in the mid 1950s.
He and Dr. Ehrhardt wrote Man Woman Boy Girl, which was published, I believe, in 1972. The reason why I mentioned that is that in 1992, at Columbia Presbyterian Hospital, Dr. Ehrhardt was a psychotherapist, and she was my therapist for a year and a half. And essentially, when I saw her, she lied to me.
She told me that I was born with a small uterus and small ovaries and that they were removed, but I can have children, I can adopt and I can get married and still be happy. But then I came out as gay when I was 14. And because I was on estrogen, she would ask me, did the estrogen makes me less gay. Fast forward to 2005, I read this book, and he mentions Dr. Ehhrhardt, and I’m livid. I am livid, I am angry, and I’m hurt, and I fire off an email to her. And I tell her, you did not win. What you did to me, what you’ve done to so many other people, the lies that you have effected, in my case, you did not win. And I think at that moment, there was a fire that started in my belly and I was committed to intersex justice, I was committed to actually repairing the harm that I had suffered, but also really fighting so that no one no one would have to undergo what I experienced.
Imara Jones: The way that medical science imposes a quote, “order,” close quote, on bodies, in ways that, as you describe from your personal experience, and that anyone can find out with respect to intersex people, is nothing other than can be described as violence. One of the things that you’ve done throughout your work, and specifically at the Intersex Justice Project is to use the experience, the informed experience of Black and brown people with the medical establishment as a way to attack and undermine the approach to people who are intersex.
And I’m wondering if you can talk a little bit about the way in which racial justice for you intersects with this issue because it’s another layer, as we’ve spoken about layers in your life, that’s really important. And I want to say this, as a side note, I just came back from Savannah, Georgia, where one of the things that I did, there was a slave tour of the city.
And one of the things that came across and that slave tour was the obsession of people who captured Africans, from the beginning, with their bodies,
Sean Saifa Wall: Of course.
Imara Jones: And what their bodies could do, and whether or not their bodies could reproduce, and how to use those bodies. And the degree to which even on slave auction bo–blocks, the inspection of reproductive organs of enslaved people was a critical and invasive part of the “inspection process” in quotes, and I can’t help but think about all of that when you talk about your experience.
Sean Saifa Wall: Why for me intersex justice is so important is that what I have seen historically, is that the intersex rights movement has been dominated by this narrative that is very, you know, assimilationist in its approach, and also very white in this approach that you know, “I have this intersex variation,” and this is where it stops. And for me, I am not only intersex, I’m Black, I’m queer, as you know, the identities that I mentioned earlier. But my Blackness and my intersex-ness are inherently intertwined. They cannot be teased apart.
Before moving to England, I saw a geneticist at Emory University. For so many intersex people, we’re often misdiagnosed. Even though I had family knowledge of having AIS, I wanted to know about my particular variation. So I see this geneticist and it was good. So we have a conversation a couple weeks later, he says that I have partial androgen insensitivity syndrome.
But this is hereditary. And it’s passed through the women on my mom’s side of the family. And he’s like, it goes back generations. And I couldn’t help but to think about my uncles who were born during Jim Crow, and the people who came before them, the people who were enslaved, the people who were in the bowels of these ships, these transatlantic ships, from Africa to the Americas. And it made me almost weep for the people who might have been thrown overboard, because they had bodies that were atypical, any number of things that have befallen my ancestors, because their bodies, you know, were not typical.
Imara Jones: A lot of the complexities and the challenges and the exposure of what intersex means for a lot of dark places in our society, but I’m wondering for you, what you believe the hope is, for intersex people and what it represents for all of us? You know, I’m thinking about the fact that, as you were saying, at 13, when you’re an adolescent and your body was trying to make these changes, that your body knew what it was doing. And it was doing it in a way that you felt good about, which means that intersex is natural, right? It’s nature trying to do something through variation, which is, we know, the basis for biology. And what for you, then is the hope for all of us, in the ability and the capacity for intersex people to thrive?
Sean Saifa Wall: Yeah, I mean, I think about what becomes possible, when we allow intersex variations to exist, right, to exist in their complexity? What becomes possible, what do we allow, what do we bring, what do we call in? You know, when the anti-trans health care bills, the sports bills, were being introduced in certain states, I was furious. And looking at the fine print, all of those bills had exclusions, especially the anti-trans health care bills, had exclusions to continue doing intersex-related surgeries.
So you know, that on the surface it’s diabolical but it’s even more insidious. And it’s even more diabolical, because it is an attack on sex and gender diversity. If the queer community, if, you know, folks in the LGBT community, however folks identify, if we don’t support our trans siblings which are taking a stand in support of gender diversity, inadvertently, we’re going to be harming intersex people.
And that’s why I really believe, especially now, with attacks from the far Right, I believe that intersex and trans communities have to be allies. There are ways in which our issues overlap and there are ways in which our issues diverge. And I think for me, this is a call to my trans siblings to really get educated around intersex issues.
Because what I’ve also found is that there are a lot of trans people, when they do a little digging, they find out that they have an intersex variation. And so I think intersex and trans communities are actually at the forefront of leading us towards sex and gender revolution, actually, and that’s, for me, very exciting.
And so I think, you know, for this Intersex Awareness Day, like coming up, I think it’s really a call to folks in the queer community, folks who are not in the queer community, to really sort of see what’s going on. With each day, with each year, I feel like the awareness of intersex is growing. And I think we need to continue on that trajectory.
Imara Jones: And for me, you know, I think about, you know, Octavia Butler, and the Metamorphosis series, and the fact that if we allow our bodies to do what they’re trying to do, then there could be so much possibility for humanity that we don’t even know. But we keep limiting it through these really medieval and racist and binary rooted systems, which are causing great harm and holding us all back.
I want to thank you for your work, and for your life, for granting us so much time out of your incredibly busy schedule to talk to us about these issues in such a personal way. And I think that we are all better off from your experience and your leadership, and look forward to so much more of it. Thank you so much Saifa.
Sean Saifa Wall: Yeah, thank you so much, Imara, for the invitation. And yeah, I hope to be in future conversations with you. I think this was really great. And thank you for the quality and the texture of questions that you ask.
Imara Jones: Of course, thank you so much. That was Sean Saifa wall, who is Black, intersex and trans, with a dog named Justice.
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