The Conversation: Pidgeon Pagonis and the Fight for Intersex Rights

Photo: Monica Kass-Rogers

By Michael Workman

Pidgeon Pagonis has slowly, oftentimes not so quietly risen to visibility in Chicago as not only an activist on behalf of intersex people, but also as a fighter for the recognition of marginalized others in general, regardless of race, sex or gender identity, class or creed. Whether advancing youth advocacy with interACT, producing informational videos that go viral on Buzzfeed, writing for Everyday Feminism or appearing on the cover of National Geographic’s “Gender Revolution” special issue, Pagonis has staked out a place at the fore of debates on intersexuality and otherness. 

Why this fear of intersexuality?
I think of intersex, non-binary or trans people—I’m not saying these were the names given throughout time—but people of intermediate sex and gender throughout history have actually, for the majority of history, been revered and been given special roles in culture and in society. So I think the fear we see today, or what appears as a fear or at least a violence toward our bodies is a very recent invention that started around the medieval era when Christianity was used in a way that I don’t think it was supposed to be, that the Bible was used in a way that’s not what the Bible states, but they’ve used it in a way to state that anything that’s intermediate in terms of sex or gender is an abomination against God or unnatural and you see at the same time a witch hunt, literally for all types of people: for witches, for Muslims, for Jews and at the same time you see people who existed freely before this time or were seen as better than other people, you see their bodies being attacked in ways that you would see other people being attacked who weren’t Christians. So I think it’s important to keep in mind that this is a very recent thing and the medicalization aspect is even more recent, it’s only been since the 1940s onward that our bodies have been altered by medical professionals. I think you see at the same time in the early 1900s a standardization process happening across the board in capitalism. You see railroad tracks being standardized—the widths of them—and you see the medical profession making an effort to standardize care and standardize bodies and things like that and, at the same time, intersex bodies with intersex genitals get standardized and put into one or the other categories. So I think intersex people are a manifestation of the history of going at anybody who isn’t considered normal—I guess it is fear because there’s a threat of power and a threat that the power will be taken away from the people in power and I think that the core of it is that intersex shakes the core of this idea that there are two sexes and two genders and one side—the male side—is above the female side and there’s a power dynamic there and I think intersexuality shakes that myth at its core. So I think we get pushed back into one or the other—actually, we get pushed back into the female role because as John Money, the doctor, is famous for saying, “It’s easier to dig a hole than build a pole.” I think there’s a fear and a history of this othering and scapegoating people seen as others whom are really seen as a threat to a lot of things really, like a certain religion or economies of capitalism or governments and societies—so yes. I think there are people who take Christianity and use it in the wrong way that it was not meant to and I think that speaks to how in medicine it clouds their vision of how they see difference in the same way.

Your struggle with this still-pervasive policy of non-consensual medical interventions reminds me of the problems the medical industry faced in the slow acceptance for the movement for hospice care, or in having to face its problems with drug lobbying, especially during the AIDS crisis. Do you see attitudes changing?
I was speaking Monday at Rush Medical University and some of the feedback we heard was that I was part of the problem that until this point I didn’t understand this is what they had to do with intersex people and now they completely feel different. So I definitely think there’s a group of people growing up today whom are going to be medical professionals or already are who are definitely changing and that’s awesome, and that’s beautiful. And then I think there are people already in these roles, the pediatric urologists especially whom are very entrenched in their ways but I don’t think it’s ever too late for somebody to change their ideas or attitudes. I think some people refuse to do so because they definitely have an idea of who they are and nobody wants to think they’re doing harm to people, that’s just not good for anybody’s psyche. So, I think those people who are a little more reticent to change, it’s a struggle with them and they don’t want to think of themselves causing harm to people. But I do see change happening and I am confident and I’m one-hundred-percent certain that we’re going to see a reversal of how intersex people are treated as kids in this world very, very soon. Within my lifetime.

You were born with an endocrinological condition described as “androgen insensitivity syndrome” for which, as a child, doctors performed surgery on you. What have been the results of that for you personally?
I think you get this and know this, but I just want to say it [for readers] that I believe I was born with an intersex variation and intersex sex traits and I don’t believe I have a syndrome or a disorder and I think it’s unfortunate that that’s the language that gets used for that even by well-meaning doctors or academics because if you read it and just gloss it over, you think “Oh, this person has a disorder or a syndrome or a condition and so they got help,” and then everyone just sort of goes on with their life. But I think when we start to understand sex as not just a binary—and gender as well—then we start to get to see that these treatments are ridiculous and purely cosmetic most of the time. So anyways, because I was born that way, they did three things: they removed my internal gonads, they removed my clitoris and then they did a vagioplasty and they put me on a lot of hormones, on hormone therapy. So the results of these interventions, well, the first result, was that I grew up thinking that there was something wrong with me, that I had cancer—they lied to me and told me that I had cancer in my ovaries when I was born and that’s why they had to remove them. That’s what they told a lot of us with intersex variation. They have to explain the scar so they say, “Oh, it was cancer and we took out your ovaries.” [laughs] So that was scary growing up, thinking I had cancer and that it might return one day. And also, the other things they did, always putting your body on display—I’d have to go to the doctor and pull down my pants and lift up my shirt and they look at you and touch you and I think I learned quickly that I didn’t own my body, that other people had access to it and it brought a lot of shame about my body because I just felt there must be something to be ashamed about if I have to continually go to the doctor and I was told not to tell anybody, not even people I was dating or my best friends because they said rumors could start going around and the only people I needed to share anything with—and what they all ignored at that time was that I couldn’t have children because I didn’t have ovaries because I’d had cancer, quote unquote. So I think that was one of the longest-lasting effects was this sense of your body’s not yours and that you should be ashamed of your body and yourself. Then, the third—which is more of a physical effect—is the lack of sensation, sensitivity, etcetera and the pain that is actually a remnant of the surgeries and the scar tissue and the nerve damage that had been caused by the surgeries. It just sucks.

Photo: Monica Kass-Rogers

I know you see how important it is to speak out about this problem in the medical community—is that what motivated you to testify for the Inter-American Commission on Human Rights? What do you think have been the outcomes to your testimony there?
Nothing, really. I think it has led to a little more of an increased interest. I think they just held a bunch of hearings recently—I believe the same type of hearing, the same type of people—I think it has put things on the books, set things in motion. I think it’s better than nothing. I think we’re going to start seeing those outcomes with the case in South Carolina, #justice4mc [filed in support of a minor subjected to surgical intervention] actually. If that comes out in our favor, then that could set a precedent with the doctors in this country so they could see that there are indeed legal ramifications if they continue in what they’re doing. The U.N. recently has come out and said that these are human rights violations, the medical protocols that are happening to us and that was really important on paper too, but the US has a long history of ignoring the U.N., especially when it comes to the rights of children—or the rights of women, or the rights of people who are not white, straight, cis men. So I think everybody plays a really valid role in activism and people whom put energy into these departments, it’s all part of the puzzle. But I think for me, personally, I’ve gotten to the breaking point where I’m like, “We need to start doing in-person actions at the hospitals.” I want to focus that in Chicago visibly on Lurie [Children’s Hospital], so they become the very first hospital to say “Hey, this is wrong, we’ve learned from our mistakes of the past and we want to move forward working with the intersex community, respecting their wishes instead of going against them, and I think we have some ins with them because I think they’re trying to be better” and I think I can be like, “This is how you can be better.”

You performed in the last season of “Transparent.” Why was this important to you and what do you think the outcome of that experience was?
A lot of intersex people talk about how there’s no real representation of us in media and when there is, we’re usually characterized in a negative or freakish light, as someone who’s got a weird medical condition. And I think it was a positive instance of representation, which was really cool, in a show that’s doing really groundbreaking work in the trans media and so, when I was asked to do this, I was like, “Okay.” I would take almost any opportunity to give positive representation of intersex people in any way that I can. I don’t know if there was any real outcome to that, but I can imagine it created a little more notoriety for intersex people in the lives of people who watch the show and are tuned into trans issues already, and then they heard “intersex,” and learned a little more about it.

So given all this, as someone who’s so engaged as an activist for intersexuality, what do you see as some of the biggest challenges for society and the intersex community on the ground today?
I think the biggest challenge is the way our society is currently set up to look for gratification or love for purpose to being here as humans, we look for that externally to ourselves, whether it’s a purchase of goods or whatever instead of looking for that inwardly. So I think that when doctors see our bodies with an intermediate sex they think we could never find love or purpose without looking “normal,” and that they think they can bring his external process to our bodies through plastic surgery and give us our happiness through that. I think we have to first rid society of this idea that you’re not good enough as you are, and you must have X-Y and Z to be valid in this society, whether it’s a car or a job or look a certain way or whatever and how do we look and find that for ourselves internally and push that. I think something really positive happened when I spoke with this pediatric urologist at Lurie, and I said to him, “I think you really need to love yourself before you can love others and I think you need to take care of yourself before you can take care of others,” and he literally laughed and almost choked on his laughter and was like, “I don’t love myself—I love my wife, I love my kids, but I don’t love my self,” and I think that’s a big thing because I really think they believe they’re helping us. And as long as we live in a society where that’s how you find certain, external gratification, then we’re going to keep running into these walls with intersex communities.

Editors’ Note: Pagonis asks that readers note that, in the section “why the fear of intersexuality” many of the ideas and concepts they shared in that section they learned from their colleague Cary Gabriel Costello who gave a talk that they attended right before the interview, and many of the ideas he shared in that talk were fresh in their mind.