Chicago intersex activist Pidgeon Pagonis on life, new memoir

Nobody told Pidgeon Pagonis that they were intersex, or born with a body that doesn’t fit standard definitions of male and female.

Not when Pagonis, who was raised as a girl but now identifies as nonbinary, learned that they couldn’t menstruate or have children.

Not when, one by one, the friends with whom Pagonis had shared secrets and sleepovers entered puberty, leaving Pagonis — whose body remained stubbornly childlike until they began hormone therapy — feeling alone and ashamed.

In their new memoir, “Nobody Needs to Know,” Pagonis, a leading intersex activist based in Chicago, explores what it was like to be part of a generation of intersex kids who were often subjected to irreversible childhood surgeries intended to make their genitals more typically male or female, and then kept in the dark regarding their medical histories.

In keeping with standard medical practices in the 1980s and 1990s, surgeons at what is now Lurie Children’s Hospital removed Pagonis’ undescended testicles and part of their clitoris, according to Pagonis’ medical records. Both of those operations occurred before Pagonis, who grew up in Chicago and Elmwood Park, was 5 years old.

“They literally took parts of my body out and threw them away,” Pagonis said.

For more than 20 years, intersex adults have complained that such genital surgeries, intended to help kids fit in, cause trauma, pain, sexual dysfunction and scarring, and should not be performed on children too young to give meaningful consent.

Doctors encouraged Pagonis’ parents to raise Pagonis as a girl without accurate information about why their body was different, the memoir says — an approach that left a teenage Pagonis feeling there was something terribly wrong with them, even as they succeeded socially, athletically and academically.

“Your parents don’t know the full truth. You don’t know the full truth — what are you even going to talk about?” asked Pagonis, who was once cautioned by a doctor not to tell anyone about the hormone pills that allowed Pagonis to experience puberty because, “Nobody needs to know.”

“‘I was in such a ‘fake it till you make it’ mode that I just wanted to make it out of there — out of that pain — but that’s a horrible way to live,” Pagonis said.

In their book, Pagonis, who rose to be a prominent intersex activist, honored at the White House in 2015 during the administration of President Barack Obama, talks about how they discovered they were intersex — during a college lecture at DePaul University in which a professor described a form of intersex in which people with male XY chromosomes often appear somewhat or entirely female, but can’t menstruate or have babies.

Pagonis asked questions, got their medical records and discovered they were one of the estimated 1.7 in 100 to 1 in 2,000 people who are intersex.

Pagonis went on to launch a fight to end medically unnecessary genital surgeries on intersex children at Lurie — giving media interviews, organizing public protests and working on social media campaigns.

In 2020, after celebrities such as “Pose” star Indya Moore lined up behind Pagonis, Lurie became the first major hospital in the United States to announce that it would stop performing irreversible and medically unnecessary genital surgeries on intersex patients too young to give meaningful consent.

“Historically, care for individuals with intersex traits included an emphasis on early genital surgery to make genitalia appear more typically male or female,” the hospital said in a written statement at the time. “As the medical field has advanced, and understanding has grown, we now know this approach was harmful and wrong . . . We empathize with intersex individuals who were harmed by the treatment that they received according to the historic standard of care and we apologize and are truly sorry.”

The following interview has been edited for length and clarity.

Q: What was it like to grow up intersex in the 1990s and the 2000s?

I didn’t know anything, first of all. I only knew the lie — that I was born with cancer and I couldn’t have kids one day in the future. But that was it. I didn’t know I was intersex.

Q: From the book, I get the sense that, on the one hand, you had this really energetic, fun, social childhood, and on the other hand, there were a lot of things that really bothered you.

I guess the biggest defining factor of that time was I wouldn’t be getting a period. It’s one thing to anticipate that, but when everyone else around you is going through that rite of passage and you’re not going through that, it’s one of the most isolating feelings in the world. I felt so different, I felt so ashamed and I was told I had to hide it.

Q: When did you decide to try to end cosmetic genital surgeries on intersex kids at Lurie?

Around 2015, I was frustrated at how slowly we were moving (in the nonprofit world). So I called up intersex activists Lynnell Stephani Long and Sean Saifa Wall, and I said, “Do you guys want to do something new, something different?” So we formed Intersex Justice Project and eventually we started to realize we wanted to take things to the street, like they did back in the mid-1990s.

Q: At that point, you’d already been working on this issue for years.

When I first started telling my story, when I was like 22, when I did that AP interview, I thought, “Once you tell your story and it gets in the newspaper, this will just end.” That was my goal. But then it never ended; it just kept going. I tried again with (the nonprofit) InterAct. We had the lawsuit we were working on at that time; I was working with the youth members at that point. But nothing was changing, so I was like, “Let’s try this way.” We said, let’s just try Lurie, because I live here.

Q: There were street protests, social media campaigns — what finally worked?

I think the tipping point was this perfect storm of celebrities putting a spotlight on our campaign, which then brought more eyes on what was going on at Lurie, and then staff inside of Lurie calling out Lurie and supporting our campaign, and Lurie having a new CEO who seemed to care more about public image than the last one. There were five people at that point that had publicly spoken out — staff of the hospital. And there were 15 or so inside that weren’t publicly speaking out, but they were helping us on the inside. (There was) enough pressure that something finally shifted. They couldn’t ignore us anymore.

Q: What was it like when that happened?

I was tearful and I was happy, but I remember this weird feeling of, “I’m performing happiness. I’m performing this thing that is expected of me right now.” And I remember also feeling, I don’t know, some sense of maybe loss, because maybe I knew in my body before I knew in my head, that I had lost some of my purpose, at least in the immediate moment, like, “What am I going to do tomorrow?” And I also know today, looking back, there was a sadness or realization that I couldn’t really protect the kid inside of me from (the surgeries). And I think I had never been honest with myself, but that’s what I was trying to do.

Q: You’re still living with the aftermath of the surgeries.

This is still my life. They literally took parts of my body out and threw them away — the most sensitive parts, the parts that you build relationships with. And then the trauma and aftereffects of all of that: the lies, the shame. You’re still you and you can’t go back in time.

Q: Was it hard to write the book?

It was a lot of hours of just being by yourself and living through everything again. To actually do that is really hard. You’re not just thinking about it, and saying, “Oh, that sucked.” You’re staying with it for days, like a certain moment, and you’re writing dialogue, and you’re thinking, how did the walls look, what was the color of the carpet, what did it smell like, what did my mom say, what did the doctors say, what did I feel? You’re in that child’s body looking up at that environment around you again, and from that vantage point of today, when you actually know what’s happening to you.

Q: And now?

Even talking about the book, I’m talking less and less about my story now. I’m just going to reference the book. And that’s another reason I’m glad it’s out. My story’s there and I can just stop talking about it.

Q: Do you look forward to that, to not having to keep telling your story?

Somewhat. But there’s kind of this bittersweet feeling of what do I do now? Who am I without my story? Who am I without my trauma? To figure that out is my life’s work right now. And it’s a weird place to be, when you’ve done personal-story-based advocacy for so long. You have a nonprofit job, or you start an organization, you have this platform, and then you realize one day that, well, it’s all about my trauma. And how do you then pivot, still doing work and advocacy for this cause, but in a way that’s not about centering your pain. I’m trying to figure out, how do I do it in a way that centers intersex joy and just joy in general, and successes, wins.

Q: So you want to stay in intersex advocacy?

I flip-flop. I’m 80% wanting to stay in this work, and then I have my days where I’m just fantasizing about how nice it would be to completely disengage and do something completely different. But I have conversations with myself, and what I’ve come to is, why would I leave this work behind that I’ve (done) for close to 20 years? I love being around intersex people and doing work for us. I just hate the trauma part.

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