Misdiagnosis to activism:
Pidgeon Pagonis fights stigmas on intersexuality
Sitting at their wooden kitchen table, Chicago native Pidgeon Pagonis slowly stirs the honey into their cup of ginger tea. Their dog Callie, a stately Rottweiler, plays with her toy in the background. Leaning forward, wearing a “Too Cute To Be Binary” t-shirt with recently showered damp hair, Pagonis reflects about their family and how the life they led before reaching adulthood was a lie.
They were born with a tumor in their sexual organs that could become cancer, or so the doctors claimed. But it wasn’t until Pagonis was 18 years old that they learned the truth.
Pagonis, a 30-year-old activist, was born intersex. The condition that Pagonis possesses is androgen insensitivity syndrome, which affects sexual development before birth and during puberty.
“I was just told I couldn’t have children and that I wouldn’t get a period when I was older. I was told that the reasons for those two things, because I was raised female, were that I had cancer in my ovaries when I was born and the doctors removed them to save my life.”
According to the Intersex Society of North America, approximately one or two children in every 1,000 births receive surgery to “normalize” the genital appearance. This means if a baby was born with ambiguous sexual organs, the doctors use surgical, hormonal and other technologies to “normalize.”
Pagonis had a cliterdectomy at 4 and a vaginoplasty at 11. The doctors explained that the vaginoplasty was to make the vaginal canal deeper and wider, so that Pagonis could have sex when they were older. They were also told that the cliterdectomy was to make their clitoris smaller.
Pagonis does not support these genital surgeries, calling them “cosmetic.” They demand that people question doctors as a whole and “make sure that they are not doing things that are just unnecessary, that then have a devastating effect on people later in life.”
Growing up, Pagonis says they always knew they were “different,” but never suspected that they could be intersex. Pagonis realized they were intersex while sitting in a "Psychology of Women" classroom at DePaul University as a professor put up a slide on a specific intersex condition, which “rang some alarm bells” in their head.
Pagonis states that the story of cancer was completely untrue and that “ [doctors] like to dangle the threat of the possibility of cancer for me as a way to kind of push through their agenda.”
Their parents were not given proper insight about the condition Pagans obtained, and when they found out, their reactions were not positive. Their father immediately wanted to sue the hospital, but their mother was carrying a sense of guilt, Pagonis says.
“I think she was more concerned [because] the doctors presented a very strong case that if they did X, Y and Z then I would be normal and normal meant a normal heterosexual,” says Pagans of their mother.
Although Pagonis was heterosexual for a while, it was between the age of 19 or 20 when they began to shave their head and date girls. After entering their first queer relationship, they chose to be queer and have identified as such ever since.
“My initial reaction was to hide it from everybody, hide the medical records. So I just turned inwards for a few years and tried to hide that aspect of myself from everybody that I could. I just felt very, very alone other than the online support group for people that were also intersex.”
The word "intersex" is a generally unknown term and topic. People often confuse an intersex person with a transgender person. According to TransFaith, only a few intersexuals classify themselves as transgender, while the majority do not identify with any sector of the transgender community.
Pidgeon Pagonis
Orientation: Intersex
Pronouns: They/Them
As such, Pagonis makes it a life mission to put an end to these surgeries. Their first step in raising awareness, a process that began during their senior year at DePaul. Pagonis interviewed activists in Chicago and presented their thesis at the end of the year. Soon after Pagonis was invited to schools in the Chicago area, the first being School of the Art Institute of Chicago, and soon become an intersex activist working with the group InterACT, which advocates for the human rights of children born with intersex traits.
Emily Quinn, InterACT’s youth coordinator, has the same diagnosis as Pagonis but was lucky enough to escape surgery.
“Most surgeries executed are medically unnecessary; they should come to an end and shouldn’t be happening,” says Quinn. “I’m really grateful and lucky that it hasn’t happened, but I think I dealt with a lot of shame and stigma and I still do and it’s hard to navigate a world that doesn’t really have space for you.”
“I started doing work internationally through that but it all started with that little talk at SAIC,” Pagonis says.
​
In 2015, Pagonis won the White House LGBT “Champions of Change” Artist Award. The award led to Pagonis meeting Jill Soloway, the director of the show “Transparent.” Pagonis introduced Soloway to the idea of an intersex character on her show. After they learned that Soloway was from Chicago along with a few of the other actors, she later asked Pagonis to come
to L.A. She had created the character Baxter, an intersex person working the volunteer crisis hotline at the Los Angeles LGBT Center, based on their life and wanted Pagonis to be in the show representing that character. Pagonis simply said, “Dope! I’m there!”
Their activism continues in their own documentary “The Son I Never Had.” "It's an experimental way of storytelling and it's very laced with audio recordings of my mother and father and how they remember things and their experience," Pagonis says. The documentary is centered around their family and their story of growing up intersex.
Pagonis is considering submitting the narrative to film festivals, due to connections from “Transparent” to “create that momentum to stop these surgeries,” they say. "I show the human rights issue and human rights violation and just kind of spreading that message."
They seek to counter the stigmatization through their activism, which includes their Etsy shop. It contains printed tees and posters with slogans that counteract the negative connotations that have been associated with intersexuality. The number one reason they started the shop was because they needed money and it also occurred to Pagonis that they weren’t selling anything when they were speaking at events or showing their film.
“I wanted to create something that spoke back to the narrative that I felt my whole life, which is that intersex is monstrous and disgusting and ugly and needs to be surgically changed or removed… I just wanted my community and all gender nonconforming people to have our t-shirts that they could feel proud of and sort of cheeky about."
Pagonis says the greatest place to start is to spread the word on what intersex actually is and what it is not. “Let them know there’s support out there. There’s intersex support groups for intersex people but also for parents and I think that’s the number one thing."
​
​
​
Story by Andriana Bozovic
Edited by Shauni Rogers
Pidgeon Pagonis uses their media footprint to dispel misconceptions about intersex people. | Photos by Andriana Bozovic
Pagonis runs an Etsy shop to sell prints, shirts and onesies for babies.