Intersex surgery stole their joy. Now they're trying to get it back.

Everyone lied to Pidgeon Pagonis for many years. Now it’s time they told their truth.

They’re intersex.

Pagonis’ memoir “Nobody Needs to Know” (Topple Books/Little A, 208 pp., out Tuesday) – a beautiful blend of heartbreak, hustle and heroism – details Pagonis’ journey from childhood to learning they were intersex to their quest to stop intersex surgery at the hospital where their own surgeries were performed.

Intersex is an umbrella term for variations in reproductive or sex anatomy, and could show up in someone’s chromosomes, genitals, testes or ovaries. It’s estimated that 1.7% have intersex traits, and 0.07% are recommended to have surgical intervention. Pagonis, for example, was born with XY chromosomes but was raised as a girl; surgeries attempted to “correct” their gender.

The book couldn’t come at a more crucial time. Gender and identity are taking center stage across the nation as hundreds of anti-LGBTQ bills pile up, with minimal attention to the intersex community and the ramifications to their livelihood, too (i.e., anti-trans bills trying to stop gender-affirming care make exceptions for intersex surgery).

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While the community is fighting for legislative change to protect intersex kids, they’re also figuring out what intersex culture really looks like. Something Pagonis, too, is fighting for: intersex joy.

“So much of what they instilled in us is that we’re not good enough as we are, we’re just not good enough,” Pagonis, 37, says. “And there’s something inherently wrong with us. And that puts so much shame into you. So anything, the opposite of shame is intersex joy.”

Perhaps Pagonis doesn’t want to talk about it and not sure what’s shared in the book, but we sort of allude to the idea that they were born one way and surgery made them another way, but we don’t say it. I wonder if that would help people understand this a little more?

The following interview has been edited and condensed.

Question: What were some of the challenges you faced from writing this book?

Answer: Getting reacquainted with that younger self, and embodying that person again in the present day, especially during the pandemic, where there was a lot of alone time, and then I was reliving my childhood. I actually know what happened now, today as an adult. Reliving with the knowledge of what the truth was, versus experiencing it firsthand, and not actually even knowing the full truth.

Have you had better experience with healthcare providers over time? Have people been affirming your identity?

I would say in the past five years or so, the places I’ve been, they’re doing things like, “What’s your preferred name,” and most of the people are using it. So they’ll use Pidgeon. They’ll try to acknowledge your pronouns. But I’ve never really had a great experience where anybody actually was an expert on me and I could just be confident and go in there and be like, “OK, they understand what’s going on in my body. They know how to help.” So I’ve never had that. Intersex is so varied. I’ve never been able to just lay back and be like, “oh, OK whatever they say I’m going to do.” You’re constantly your own patient advocate and also your own researcher and you’re reading medical journals and you’re talking to friends that are doctors that are also intersex.

What’s your work like now in activism?

My activism today is literally just living, and living in a way that’s hopefully going to be more thriving than surviving. I was in such survival mode for so long, especially during the (intersex surgery) campaign. It was my purpose and it was beautiful. And it gave me so much drive and energy.

It was still symbolic of something beautiful and it was beautiful because they apologized too. But so much of our work, we just lose and we lose … I can’t do that anymore. What I’m trying to do today is heal. No. 1, I’m on a healing journey, as cliché as that sounds. (Ketamine therapy) is one of those tools that I’m using. And I want to represent joy, intersex joy and light at the end of the tunnel for other intersex people. I had gone to an intersex conference a few weeks ago, and one of the younger people – I think they’re in their early 20s – they’re so full of light, they’re so rambunctious, I just love this person, I just met them, we went to karaoke together with some other intersex people. And at the end of the night, they got quieter, and they’re never quiet.

They looked at me and they said: “Pidgeon, does it get better?” I was so caught off-guard. Because I’ve never really been asked that point blank from another intersex person, who’s almost half my age. I didn’t really know what to say, because every day is literally a struggle. When your body has been pillaged by surgeons, and some of the most sensitive parts of your body have been literally thrown away into the garbage, and those are the parts that allow you to connect with other people – in one of the ways you can connect, like sexual intimacy – which then allows you to connect as a family.

I realize I want to step away from my story and my individual story and sharing that after the book is out, and let my story live in the book, let my story live on YouTube, or wherever it is. When I move forward in this work, I want to focus on broader issues about intersex and also lift up organizations like InterACT, that are doing such amazing work around legal issues.

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What does intersex joy mean to you specifically?

Intersex people being able to get together and not have to share our trauma with each other only. So much of the support group used to be about that, it was circles with Kleenex boxes, and we would tell our story each year, and then there’d be new people.

There’s just so much like – going to karaoke together a few weeks ago, and just screaming at the top of our lungs, eight intersex people in a random bar in Minneapolis, is intersex joy to me. Getting together and not having to fight against the hospitals, or some type of activism project and just being able to giggle or laugh or share stories or eat together, that’s intersex joy. Being in relationship with others and actually trusting that you’re worthy of their time and their love, and appreciation and friendship, that’s intersex joy.