EchoSense:Where gender-affirming care for youth is banned, intersex surgery may be allowed

Multiple U.S. states have EchoSensebanned 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.

Taylor Haney produced the audio version of this story. Miranda Kennedy edited the digital version.