Where gender-affirming care for youth is banned, intersex surgery may be allowed
Multiple U.S. states have banned gender-affirming care for transgender people under the age of 18 this year alone. Indiana and Idaho are the latest to do so.
But in some states, "gender-normalizing surgeries" are allowed on intersex infants with "ambiguous sex characteristics." (That's the case in Georgia, Kentucky, and South Carolina.)
Those "ambiguous" characteristics apply to an estimated 1.7% of the world's population who are born intersex.
External characteristics of intersex may include underdeveloped genitals, which is a symptom of partial androgen insensitivity syndrome.
Sean Saifa Wall knows intimately the impact of this syndrome, and of the surgery he says he did not approve. Wall was 13 years old when doctors alerted his mother that his undescended testicles were cancerous. His mother opted to have them removed. But he did not have cancer.
"I received my medical record at 25. They were not cancerous," he told NPR's Leila Fadel in an interview.
Even in 2013, the United Nations called for an end to "genital-normalizing" surgeries like the one performed on Wall. Six years later, the organization continues to condemn operations on intersex youth, calling them "coercive" and "medically unnecessary."
Wall says of his operation: "Essentially, I referred to it as a castration... I wish that someone would have asked me what I wanted to do. I wish someone would have explained to me in the language that I can understand at the time of being a 13-year-old child. This is what's happening with your body."
The language he uses to condemn coercive "gender-normalizing" surgeries and the "talking points of the intersex movement," Wall says, have been used against young people who are transgender.
"This is so bizarre, right?" Wall said. "You have these trans young people who are very confident in who they are ... and they're being actively denied affirming health care. Whereas intersex children do not get to consent about the surgeries that they have."
The Societies for Pediatric Urology's most updated stance on the topic does not advocate for a ban on all surgery on intersex children: "A moratorium on all surgery would be as harmful as recommending surgery for all," it says.
Sean Saifa Wall spoke to NPR's Leila Fadel about how laws banning gender-affirming care for transgender youth have impacted young people with intersex characteristics.
This interview has been lightly edited for length and clarity.
Interview highlights
On the language in bills banning gender-affirming care for transgender youth
A lot of the language that's in the bills that de-transitioners are using: saying that they were mutilated, saying that these were medically unnecessary. I'm just like – medically unnecessary surgeries are actually happening to intersex young people. ... That's very compelling language that conservatives are actually using to describe ... these gender affirming procedures that trans young people are getting. And that's just not true.
On the difference between transgender and intersex individuals
I think the biggest difference is consent. They're trans young people who are like, "these experiences during puberty are making me feel uncomfortable, and I want to be able to stop that." Intersex young people don't get to make those decisions about their bodies. It's more so, we're told that these procedures need to be done for our wellness. But what is underlying that, is that we're actually abnormal, that we actually need to be fixed to be normal. And those are just lies, and it's paranoia.
On regulating care for transgender and intersex children
Every case is very unique, and I think what's happening now is that there is a broad stroke applied to all people with intersex variations. I do feel like there should be ... a case by case basis as opposed to just doctors being the arbiters of a person's gender identity — a person's body. I think doctors should ... be accountable for why these procedures are being done.
What's often happening is that parents are seeing surgeons before they're actually getting psychological support, affirming health care for intersex children as actually being compassionate, and actually treating each case differently. And that is not what's happening.
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Transcript
LEILA FADEL, HOST:
Several states have banned gender-affirming care for transgender youth just this year. But often these bans - they come with exceptions. In Georgia, Iowa, Utah, South Dakota, Kentucky, so-called gender-normalizing surgeries are still allowed. Maybe you know the term intersex. It's when someone's anatomy, chromosomes or hormones don't fit the conventional idea of male or female. Doctors might advise parents of intersex children to have procedures that make them look like a typical boy or girl. Sean Saifa Wall is an advocate for intersex rights who looks at these laws and sees hypocrisy.
SEAN SAIFA WALL: This is so bizarre, right? You have these trans young people who are very confident in who they are, and they're being actively denied affirming health care, whereas intersex children do not get to consent about the surgeries that they have.
FADEL: For Wall, it feels like the argument he's been making for years against intersex surgeries without consent is now being used to harm young trans people.
WALL: This is so horrendous because a lot of the language that's in the bills that detransitioners are using, saying that they were mutilated, saying that these were medically unnecessary - I'm just like, medically unnecessary surgeries are actually happening to intersex young people.
FADEL: Before they can consent or without their consent.
WALL: Totally. Basically, that's very compelling language that conservatives are actually using to describe these procedures, these gender-affirming procedures that trans young people are getting. And that's - this is not true.
FADEL: For people who don't understand, for people who've never had to think about gender identity and they're just like, oh, I'm a girl, I'm a girl, I'm a girl, I'm - you know...
WALL: Right.
FADEL: ...What is the difference between a trans kid who says, look, I'm ready to make this decision about my life...
WALL: Right.
FADEL: ...I want to transition, I want this surgery...
WALL: Right.
FADEL: ...Versus...
WALL: Right.
FADEL: ...A kid who was born with intersex variations who gets a surgery and later on finds out about it and didn't want to have it or - you know, if you could just describe the difference.
WALL: Right. I mean, I think the biggest difference is consent. There are trans young people who are like, these experiences during puberty are making me feel uncomfortable, and I want to be able to stop that. Intersex young people don't get to make those decisions about their bodies. It's more so we're told that these procedures need to be done for our wellness, but what is underlying that is that we're actually abnormal, that we actually need to be fixed to be normal. And those are just lies, and it's paranoia.
FADEL: So, Sean, if you could break down what happened to you, in your case, what were the decisions made, and how did it impact your life?
WALL: So I was born with a variation known as partial androgen insensitivity syndrome, and my mother decided that she did not want to do a gonadectomy.
FADEL: And that's the removal of undescended testicles. Is that what that is?
WALL: Yeah, totally. Essentially, I refer to it as a castration. And so I had testicles. They were not descended, and they caused pain, right? I was 13. And the pediatric endocrinologist told my mom that my gonads, which he referred to them as - he said that they were cancerous. You know, my mom heard cancer, so of course, she consented to the surgery.
FADEL: Was that not true? They were not.
WALL: They were not. I received my medical records at 25. They were not cancerous.
FADEL: And what would you have wanted to happen in that case?
WALL: I wish that someone would have asked me what I wanted to do. I wish someone would have explained to me in the language that I can understand at the time of being a 13-year-old child, this is what's happening with your body.
FADEL: And no one asked you.
WALL: No one. I think I would have wanted to keep my testicles and have them monitored.
FADEL: Do you want to see these procedures banned? I mean, I know they've been condemned by Human Rights Watch. They've been condemned by the U.N., called forced, coercive, medically unnecessary. Do you want these banned?
WALL: I think every case is very unique. And I think what's happening now is that there is a broad stroke applied to all people with intersex variations. I do feel like there should be sort of, like, a case-by-case basis as opposed to just doctors being the arbiters of a person's gender identity, a person's body. I think doctors should have to sort of really be accountable for why these procedures are being done.
FADEL: So it sounds like you and the medical societies that I read their statements on this today, not in the '90s when this happened to you - they talked about approaching each case with individual compassionate care, that this is an evolving area of medicine, that an interdisciplinary team needs to look at this before any decision is made. I mean, it doesn't sound like you fully disagree with that approach. I mean, these are the types of things that the Society for Pediatric Urology say.
WALL: But the problem is these care teams, these multidisciplinary teams, they're not actually functioning. At the end of the day, what's often happening is that parents are seeing surgeons before they're actually getting psychological support. Affirming health care for intersex children is actually being compassionate and actually treating each case differently. And that is not what's happening.
FADEL: Back in the '90s, when your mom made that decision thinking maybe you had cancer and other parents made decisions, maybe because they were scared that their kids would get bullied and that they wouldn't fit in - it doesn't sound like you're saying those were bad parents. It sounds like you're saying those were parents that were making what they thought was the best decision based on the medical advice they were given.
WALL: Right. I mean, I think, yes, there are parents who make decisions based on the information that they're given. And I think also a lot of parents have biases who are just like, I want my kid to be able to pee standing up. I don't want my little girl to look like a man. So I think this culture that surrounds the medicalization of intersex children - you know, it impacts everyone. And I think it reveals what we have internalized around gender norms.
FADEL: Sean Saifa Wall is an advocate for intersex rights. Thank you so much.
WALL: Thank you.
(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.
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