You’ve spent years pressuring Ann & Robert H. Lurie Children’s Hospital to end surgeries that modify or remove genitals from kids who are born intersex, dictating their gender before they’re able to consent. What did you think of its announcement in July that it would become the first hospital to do so?
It’s a very beautiful, heartfelt apology. They took our demands seriously. But there are a few things that worry me. A few years ago, everyone who had congenital adrenal hyperplasia [which can enlarge female genitalia so they appear male] was considered intersex. Lately, [doctors have] been saying they’re not, that they’re females with birth defects. Then Lurie said, “We’re going to pause those surgeries for six months.” I don’t know why they’re trying to keep the door open for CAH patients. Nobody should make a decision about someone else’s genitalia and future gender identity. They need to allow that person to have a role in the decision with meaningful consent.
Why do you think this happened now?
Four years of pinpointed pressure on one specific clinic at Lurie [where Pagonis’s surgeries happened], that was the first step — not just fighting for ending intersex surgery in the whole country, but saying, “We have limited resources. What can we do?” Dr. Ellie Kim was the first [Lurie employee] to speak out but also was the first to go to her superior, Robert Garofalo, and say, “You are on the wrong side of history. ” At first, he wasn’t really feeling it. But the next day, he said, “I’m going to do everything I can to get this to end at this hospital.” He’s a high-up dude. That’s when this started to fall in our favor.
You’ve said that your next step is to hold Lurie accountable. How do you plan to do that?
We are moving forward on legislative efforts to bring a countywide or statewide ban on the surgeries. We also need a reparations fund from the hospital, which has made money off of the human rights violations of intersex patients for decades.
For you specifically, what would reparations mean?
They took out my testes and performed a clitorectomy and a vaginoplasty. I’m going to need therapy for the rest of my life. I’m left with nerve damage and scar tissue and pain. I’m reliant on the health care system because of the hormones I need. It’s the humane thing to do to offer a medical fund.
What kind of support should intersex kids get instead of surgery?
Less is more. They need to shift from the current medical protocols, which are very body focused, to focusing on the mind, like pairing kids up with intersex support groups.