Interview with Pidgeon

An interview with Chicago activist Jen “Pidgeon” Pagonis about intersex issues and artwork.

Interviewed by Bryce Wolfe.

B: Can you start off by saying a little bit about who you are and what you do?

P: My name is Pidgeon, but my real name is Jen Pagonis. I’m from Chicago and I am an intersexed person who wants to make sure that what happened to me doesn’t happen to other intersex people.

B: How are you working on that?

P: I’m working on different issues that affect intersex people, maybe not so directly, but working on stopping the public health care cuts that are threatening Chicago. Intersex people basically have a lifelong dependency on the health care system and if the city keeps proposing these cuts to cheap and free services like at Cook County and Stroger Hospital and other clinics, it’s going to have a direct impact on intersex people because we often need to go to clinics every six months, every few weeks, every year for surgeries and hormones. If there’s not an affordable option, it’s going to affect a lot of intersex people that really depend on health care.

B: Insurance doesn’t cover intersexed people, correct? It’s considered a pre-existing condition?

P: Yeah. At least for me, I can’t speak for everyone. When I did have insurance, they labeled everything as a pre-existing condition and it’s funny because everything that I needed help with through the medical system, I needed help with because of the surgeries they forced on my body when I was an infant. And older too, but it started as an infant.

B: Do we have a group in Chicago right now (advocating for intersexed people)?

P: There was a small Chicago group that used to meet once a month for brunch. It came out of a larger national group that meets once a year in different cities and has an online listserv and is only for one type of intersex diagnosis, Androgen Insensitivity Syndrome, which is what I have been diagnosed with. So we decided, hey, we all live in Chicago. Why don’t we meet up ourselves? Unfortunately it fell by the wayside, but what I thought was interesting was that the shame that gets placed on intersexed bodies is so strong that even among other intersexed people, we were talking everything but intersexed issues. We were talking about football and the pancakes that we were eating and we had to make a deliberate effort to actually talk about our bodies and about what things are happening in our communities and what’s bothering us. When we did, it opened a Pandora’s box. We started peer-educating each other. Me and a younger person, who was actually in high school and I was in college, we were teaching women in our group that were in their 30’s  basic anatomy like where the vagina was, where the urethra was, what a uterus was and whether she had one or not – things that had been kept off limits in her family and from herself because of the immense shame and secrecy. She had no education about her body and she was in a relationship with a person of the opposite sex. They were having sex and she didn’t know if she had a cervix or a uterus or what a vagina was.”

B: “In my sex ed, we didn’t cover intersexuality at all or the fact that people can have bodies different from the ones they show in the illustrations in the books. It’s like, either you’re this or you’re this, and if you’re not, then you look at it and wonder – well, what am I?”

P: “It’s interesting because I had known that something was up with me. Since the time I was young, I was in and out of Children’s Memorial Hospital and the endocrinology department. I remember some of the surgeries. I remember going every six months and getting on these pills called hormones and all this stuff… but when I saw those people’s bodies, I believed the doctors that said everything was okay. I was normal. I just had cancer. Cancerous ovaries when I was a child and they had to take those out, and they were just monitoring. And I really believed it and I think it’s because I wanted to believe it, because during that time of puberty and sex ed when everyone’s getting their period, the most important thing for me at that time was to fit in and be normal. I think I even viewed my body differently. I saw myself as normal. I thought that one day I was going to find my clitoris. Like maybe it was tucked away and I just wasn’t finding it. It was somewhere. And maybe one day sex with a boy wouldn’t hurt and it was me doing something wrong, and it wasn’t the scar tissue they had created or the numbness they had created or the clitoris they had removed. I held onto every word that the doctor said as true. And when I saw those bodies… female… male… I identified as female. I’m female – that’s me! I had the basic things going on. I had a split between my legs. I sat down when I peed. So that was enough for me, even though there was a lot of things that weren’t similar at all to the illustrations, like I didn’t get my period.”

B: “How did you find out that you had the surgeries?”

P: “It’s funny. I had a dream. A recurring dream that I woke up in a hospital bed zooming through the hallways of a hospital and all I could do was see upwards, which was flourescent lights zooming by, and then I looked down and I saw rolls of toilet paper soaked in blood between my legs. I always thought that was just a nightmare. So fast forward. Actually, I had a surgery when I was 11 that I do remember. But the two surgeries when I was an infant, when I was one year old and three years old, I found out about in college. I ended up going to DePaul University which is right by Children’s Memorial in Chicago, and I took a Psychology of Women class. The teacher was trans and felt the need to present all types of sexualities and genders, which was cool. They did a little chapter on intersex and she actually picked up AIS, was the only thing she talked about, and coincidentally that’s what I had been diagnosed with without knowing. So I saw the powerpoint and it said: AIS. Androgen Insensitivity Syndrome. 1 in 4,000 children are affected. In a city like Chicago, a certain number of people exist. Doesn’t get their period. Doesn’t have ovaries. Generally has large breasts, tall figure, perfect skin… and then it said, has XY chromosomes. So I was like, “Wow, all those things sound like me except for the XY chromosomes.” I was like, “I’m a girl. I have a boyfriend. I have XX chromosomes. I’m a girl like all my friends. I’m a girl.”

B: Even though you can’t see chromosomes.

P: Yeah, I’m like, “I know I have XX!” Because that is what I identified with and had been told to identify with and believed so truly. Or wanted to believe. So I go home and I call my mom on the phone and I said, “Ma, what do I have? What is my diagnosis? What do they label me as in the medical records that you just got?” Because I just turned 18 and Children’s kicks you out when you’re 18 and tells you to find a gynecologist. So she is like, “Oh, I have the documents here on the table. They just sent them to me. Let me open them.” I honestly don’t think she knew what I had. She couldn’t recall off the top of her mind because she had wanted me to be so normal too. She didn’t even think twice about it. So she opens up the documents and starts saying the words “androgen insensitivity” and I had known that that’s what we had talked about in class. And I had also learned in class that this is what people call hermaphrodites.”

B: How did you feel when she said that?

P: Well, I threw my phone at the wall, which was a cinder block wall, and my phone broke. And I started crying and punching things and throwing things.

B: Where have you come since then?

P: At that point, I was convinced that I would never tell anybody. I still had a boyfriend at the time, so I wasn’t even going to tell him because I thought he would think he was gay and then get freaked out and tell everybody that he was dating a hermaphrodite. And then I luckily met another intersex person that my teacher invited to speak to our class. She told me, “Look, you need to say you’re intersexed, because you are. And you need to get your medical records from Children’s.” She told me how to go about it. I got my records a long time after. It took forever. And once I got them, the first word I read on the first medical record was from 1987 and it was in cursive handwriting – really nice cursive handwriting – and it said “male pseudohermaphrodite 46 XY”. And I had never seen myself referred to as male, let alone a hermaphrodite…

So that was even more intense than hearing from my mom that I had AIS because I had been branded a hermaphrodite for twenty-some years before even knowing it. So I called my friend who was the person who had spoken in my class, and she talked me through it and said, “Just keep reading. I’m here for you, cry or whatever you gotta do, but you gotta read everything they did.”

And that’s when I found out that when I was one, they removed my gonads. When I was three, they did a clitorectomy and clitoroplasty, which are fancy words for saying they cut off my clitoris and threw it away. It made sense because of that dream I kept having. I put together the years and that was when I was like three years old, which means I could still have a memory of that. I had dreamt that I had blood-soaked gauze between my legs in a hospital bed, so I put two-and-two together and realized that wasn’t a dream. That was a memory. Nobody had ever told me that. Nobody had ever decided it was important to tell me they had cut my clitoris off. They thought I would just keep going because, you know, women don’t need to orgasm and clitorises aren’t important, so why tell me? It’s all about penetration anyway.

B: Which was the purpose of the surgery, correct?

P: Yeah. When I was 11 they did a vaginoplasty, which made my vagina more fuckable basically by a normal sized penis, they said. They wanted to make it deep and wide enough to fit my husband’s penis, which is quote for quote what they said. What if I didn’t want to have sex? What if I just wanted to have oral sex? Why did they assume I was going to get married to a guy? So that was then. I didn’t tell anybody for like a year or two and then around my third or second year of college, I met a girl and we started dating. That was big shift for me because I had previously only been dating boys. And she was really big on therapy and talking things out, and I had always been a person who didn’t believe in talking or therapy and I thought I was more strong if I didn’t talk about anything going on.

She was the first person I told that I was intersexed and when she didn’t run away or freak out, it gave me more confidence in our relationship and in my relationship with the outside world. She was the first person I told anything and everything to. Even after two years, I didn’t think I was going to tell anybody else. And then I told my best friend and then I decided to do my thesis on the topic. I got to talk to other intersex people. I got to go to the Oprah show that my friend was on, the one that spoke to my class. I got to see other intersex people tell the world on TV that they have huge clits and they can get off on people jacking them off, giving them oral sex and they can penetrate people and they’re telling this to Oprah’s audience. And I was like, “Damn, she’s brave.”

B: You’ve said before that it’s the secrecy that really hurts.

P: Yes, definitely. So I got to see sombody break the shackles of secrecy on national TV. And this was somebody I had a crush on. And then I saw her tell her story and I still had a crush on her. So I was like, maybe people won’t think of me differently once they know. That was the turning point for me. I was like, look at these people telling the world and people still love them after. In fact, they might love them even more and feel more connected and feel like they can open up and share their stories now.

B: And other kids who are intersexed, or adults who didn’t even know, now they see.

P: They hear their stories reflected. So I was like, this is important. I need to talk about it. So I did my thesis on it and presented it to everyone in the room, like faculty, people in the community and most importantly for me, both of my grandmothers were there and my father and my mother, my sister and my brother. We don’t really talk about these things and to be able to have the microphone and to have them captively listening in the audience and to see them really proud, and for once no one had to feel ashamed. The point wasn’t to be like, “Mom, Dad, you did this to me. I’m mad.” It was more like, “This is a hurdle that I’m getting across. Shit happened but I still love you and I know you guys love me.” And that was it. I had told a whole bunch of strangers and my whole school knew because people talk, and I started giving talks to different classes and in front of doctors and that’s where I’m at today. Now I’m looking at the next step.”

B: How is your relationship with your family now?

P: It’s good. I actually just told my dad that I’m queer this summer. That was the best thing ever, because I had been so scared. We went to the dog beach and had a nice day and then I told him. I was like, “I need to tell you something and if you don’t want to hear it right now and you’re not ready, you can let me know.” And he’s like, “No, I want to hear it.” So I went on and I told him. I’m like, “I like women.” And he’s like, “Yeah. I kind of knew.” I was like, “Really? I wasn’t hiding it from you? I thought I was doing such a good job of covering it up, even though you met every single girl I’ve dated and I haven’t dated a boy in four or five years.” He was like, “I still love you no matter what. You’re still my girl.” So that was a relief. My mom I had told before and then we talked about it again. It brought us closer together. He asks about my girlfriends. After I broke up with a girlfriend this summer, he gave me advice which was awkward because he’s never given me advice about boys or anything. He became like Dr. Phil somehow, like “There’s other fish in the sea, baby, no worries.”

The issues I have with them don’t really stem from what happened to me anymore. It’s other things, like growing up in an abusive household where my dad drank a lot and got violent and leaving us for a long time. It really has nothing to do with me being intersexed. In the beginning when I found out, I was really upset with them. I couldn’t believe they had let some doctor cut up their child. But now I see that they’re a victim of the same society that we’re all victims of, whether you’re genderqueer or whatever. They scared the fuck out of my family. My family wanted what was best for me, and (the doctors) presented what was best for me as normalization surgeries and hormones. My parents don’t have the privelege of Women’s and Gender studies background like I do. There’s not an education out there for most people.

So my goal… I woke up one day and asked “What am I living for? What is my purpose other than working at a coffee shop or whatever?” Before I die, I want to make sure that what was done to me and every other person at Children’s Memorial that was intersexed, and other hospitals, doesn’t happen anymore. I want to see them adopt a hospital-wide policy that respects the patient and works from a patient-centered approached instead of thinking that the doctor knows best and applying their theories on the body of an intersexed child.

B: Some would say they do know best because we do live in a binary system where it’s hard to be different. How would you respond to that?

P: I would tell them that they can suck my clit. No, really, they can go fuck off because they’re not the ones that are intersexed. The intersexed people that I know would say that the number one thing they wish wouldn’t have happened was surgery. It’s hard growing up even if you’re a rich white male kid that’s “normal”. It’s hard growing up no matter who you are. And to use that argument, it’s…

B: Would you no longer be intersexed, if you could change that?

P: No. I like not getting my period. I would have liked having a big clitoris, which they cut away. I think it allows you to become connected to a community that you wouldn’t otherwise have been connected to. It allows you to really understand gender in a way that many people do not. You understand that there aren’t just two genders, like the doctors and other people want to tell you. I like being intersexed. I just wish they didn’t do surgeries because I don’t like being numb. I don’t like having scar tissue. I don’t like that part. But I can guarantee you that a little bit of therapy would have helped more than the surgeries, and to say, we need to fix the individual that is “different” is really not a solution because unless you focus on community changes on perceptions of gender and what’s normal and what’s not, then everyone is going to feel like an outcast. To just chop babies up and move their parts around and say “Look! He’s normal or she’s normal!” That’s not solving anything.

B: It seems most often surgeries at birth are performed for medical reasons, like if they can’t breathe or have a condition that could kill them, but being intersexed doesn’t kill you.

P: Yeah. Instead of doing surgery because it’s medically necessary, they do it because it looks cosmetically nice. It never looks nice. It’s done to make (other people) more comfortable.

B: Can we talk about your art? I know you express yourself through photography.

P: I love photography… I focus on people. I used to be scared to focus on people. I just felt intrusive and nervous and scared.  There’s a whole psychology thing that goes on when you’re interacting with a person on the street that you don’t know and you want to take their picture… I like to focus on people because they’re the most interesting to me, and it’s usually their eyes. I’ll make eye contact with somebody and I get this burning desire to take a picture of them, and then I start talking to them and I get to know them. I find out their stories and I’m like “Holy shit, there’s a wealth of knowledge here.”

B: If you could photograph anyone, who would you choose?

P: I would photograph intersex people reclaiming their bodies. And one way I would do it is by having them stand like they do in medical textbooks with the black and white picture, the naked body, arms out, legs spread and a black bar across their eyes. But to totally subvert that, like have them jumping out of the picture and being fabulous and giving their middle finger to the camera like “Fuck you, medical industry!” And having their dog with them or their art or fashion or whatever they do. And sometimes just showcasing their eyes and blacking out the rest of the body. I feel like our bodies have been colonized for so long by photography in those situations, to then take photography and flip it upside down… That black bar is bullshit. It’s more about shielding the viewer from seeing the other and recognizing that that’s a human being.

B: So how can people become allies? What can people do to help?

P: They can check out stopmutilating.wordpress.com. There are projects like Bodies Like Ours, Intersex Initiative and Emi Koyama does some cool work around intersex issues. There is the Accord Alliance, which is a more conservative group working to reforms hospitals and the way they deal with intersex people. They came out of ISNA.

B: Do you have a website or a place where people can view your artwork?

P: I have a Flickr. It’s flickr.com/jenandi
and I’m going to build a website soon, like everyone says they’re going to do. And that’s what’s up.

Thanks Pidgeon!

For more information about intersexed individuals and current issues, check out these links:

Intersex Society of North America: http://www.isna.org/

Bodies Like Ours: Intersex Information and Peer Support: http://www.bodieslikeours.org/forums/

Intersex Initiative: http://www.intersexinitiative.org/

Accord Alliance: http://www.accordalliance.org/

Jen “Pidgeon” Pagonis: http://www.flickr.com/photos/jenandi