Tanzina Vega: For decades, doctors in the United States have performed surgeries on intersex children to make their genitalia appear more like our common perceptions of male and female anatomies.

Sean Saifa Wall: Intersex is a set of variations and sex characteristics whether they be gonadal, chromosomal, or hormonal that are atypical for males and females.

Tanzina: That's Sean Saifa Wall, the co-founder of the Intersex Justice Project. We're going to hear more from Sean in just a second. Activists and human rights groups, however, have widely condemned these surgeries, but even after a 2013 report from the United Nations which called on countries to outlaw genital surgeries on intersex children, most hospitals in the United States have continued to allow them.

Last week, the Ann and Robert H. Lurie Children's Hospital of Chicago reversed course, becoming the first major hospital in the United States to officially halt these surgeries for intersex children. The hospital's announcement came after years of pressure by the Intersex Justice Project, a group that works to end these surgeries. In a statement, the hospital said that historically they had taken part in these surgeries, but that, "As the medical field has advanced and understanding has grown, we now know that this approach was harmful and wrong."

Joining me now is Sean Saifa Wall, co-founder of the Intersex Justice Project. Saifa, welcome to The Takeaway.

Saifa: Thank you so much.

Tanzina: Also joining us is Kate Sosin, a reporter covering LGBTQ+ issues at the 19th. Kate, welcome to The Takeaway.

Kate Sosin: Thank you for having me.

Tanzina: Kate, let's start with you. Are intersex surgeries common in the United States or in other parts of the world?

Kate: Intersex surgeries are incredibly common. From what we know, no hospital has come out and stated that they don't perform these procedures. Almost no country has come out and stated that they won't perform these. Malta became the first in 2015 to say that they wouldn't do that, but very few countries or states have actually outlawed the procedures around the world.

Tanzina: Saifa, why are intersex people and activists viewing these surgeries on intersex children as harmful?

Saifa: I think the people who are speaking out are the adult survivors of these surgeries. I think for myself, for the people who I know, the activists, the human rights advocates is that we have been harmed. Some of the lasting effects, for lack of a better word, of these procedures are loss of sensation, scarring, very real trauma, and I think our advocacy is informed by not wanting young people to go through this unnecessarily. I think we have a duty to prevent unnecessary trauma.

Tanzina: Kate, given that the surgeries have been condemned by a number of human rights organizations, as we heard at the top here, why are they still accepted by the medical community as much as they are, given everything also that Saifa just outlined?

Kate: There's a struggle for transgender individuals to access trans-affirming medical care, which is medical care that would bring trans people in alignment with the gender that they identify. We have an issue in the US of people not being able to access care that aligns with their gender. For intersex people, they're having the entirely opposite issue, which is they're not having autonomy over their bodies.

It comes back to an issue of, in the US we have a really binary idea of gender. We think of men as men and women as women, and we think that these things are written in stone. Intersex people really show that there are variations, and that's really uncomfortable for a lot of us to confront. Doctors for decades have been writing that out.

Tanzina: I just want to make sure I'm being clear, and Saifa or Kate, please correct me if I'm wrong here, but being intersex is not the same as being trans.

Saifa: It is not. The way I think about intersex is that it's a biological reality, but transgender is about how people feel, how they express their gender.

Tanzina: Saifa, in the previous segment you mentioned, and this was something I've been thinking about, these surgeries I believe you call them cosmetic and medically unnecessary. It feels like the cosmetics here are what may have been driving the medical community to do that. Is that right?

Saifa: Yes. I think what often doesn't come out is the medical bias against intersex bodies. I think for years, intersex activists have shared how these surgeries have impacted them. I think our messaging has been very consistent over a number of years since the days of the Intersex Society of North America and Hermaphrodites with Attitude. Our messaging has been consistent.

I think what often doesn't come out is provider bias, the bias on the part of the doctors. It was in the Human Rights Watch report in 2017, I Want To Be As Nature Made Me, where it was in that report that it was discovered that surgeons have the highest level of bias toward intersex variations. Their bias informs parents' decisions about doing these surgeries. I think, definitely, it's like provider bias that's really informing these surgeries.

Tanzina: Kate, I want to talk a little bit about why the hospital decided to end the surgeries, but before that, I'm wondering if you've spoken to parents who may have, with the best interests of their child at heart, decided to do this surgery because they wanted to maybe protect the child from anything in the future. Were the parents you've talked to aware of the trauma that these surgeries could entail, or did they do this with the best of intentions for their kids?

Kate: I actually haven't interviewed parents of intersex children, but I have interviewed a number of intersex people who have spoken about their parents. It seems like parents were not given complete information or really understood the consequences of these surgeries or did not understand necessarily how traumatizing these surgeries might be, that they thought that they were doing something that might help their children live a "normal life" and didn't understand that they might be taking away or foreclosing some possibilities for their kids, including being able to have children or feel sexual pleasure, or that they'd be subjecting them to really invasive and painful medical treatment for years, or even lying to their kids and telling them, for example, that they had cancer, and that those narratives would be troubling for years and years and years.

Tanzina: Kate, based on the reporting that you've done, why did the hospital decide to end surgeries last month?

Kate: That would be because Saifa's co-founder on the Intersex Justice Project, Pidgeon Pagonis, really fought this for years and waged what I would say was a relentless campaign around us. It's worth noting that Lurie is a very prestigious hospital in terms of gender care in general. It has a renowned gender clinic, specifically treating trans and non-binary children that was started in 2013. It has a really great reputation among LGBTQ people. Because of that, it makes it a very prime target for a campaign like this because there's such a dissonance when you're doing such great care for transgender people and continuing to do these surgeries.

Tanzina: Saifa, when you consider your own surgery that happened when you were 13, how did that shape your view of intersex surgeries?

Saifa: I think looking back, my mom wasn't given all of the facts. If my mom was involved in a thorough informed consent process, I think she wouldn't have consented to the surgery. I feel like at the time, I was a child. I was a child and these physicians were using terminology that was way over my head, and they weren't being honest with me about the reality of my body. They told my mom that I had gonads, which is undifferentiated sex tissue as opposed to testes.

After I was castrated at New York Presbyterian Hospital, I was put on feminizing hormones, which really caused another level of trauma because I saw my body feminized in ways that I was really uncomfortable with. I think, in hindsight, I would have been okay if I had proper psychological support with the changes that were happening. I feel what happened to me, I wasn't given autonomy over my body because it came with the scripts that was based in compulsive heterosexuality, that I would have the surgery, be subject to these hormones, and then eventually, I would have genital surgery, which would be able to accommodate sex with my future husband.

There are so many assumptions that are made, and I think what is pretty disturbing is that there are so many people with the same variation. I have androgen insensitivity syndrome. If they were assigned female at birth, all of them have been given the same script throughout the United States and different parts of our country. For me, that's a problem. I think it just shows the consistency by which the medical establishment, particularly around these variations, have these very insular prescribed narratives for people with these variations.

Tanzina: Sean Seifa Wall is the co-founder of the Intersex Justice Project, and Kate Sosin is a reporter covering LGBTQ+ issues at the 19th, thanks to you both for joining me.

Saifa: Thank you.

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