Intersex activist, artist and filmmaker Pidgeon Pagonis stopped by the University of Chicago ( UChicago ) on April 6 to discuss intersex identity and screen their film The Son I Never Had.
After introductions from UChicago graduate students, a friend of Pagonis—who they met after lecturing about intersex identity for the first time—read a piece about being intersex in an Latinx home. They described feeling unworthy of celebration, dressing all in black for a "goth Quinceanera."
"The story sucks you into what it feels like," Pagonis said about their friend's intersex narrative. "Everyone hits puberty except for you."
The Son I Never Had follows Pagonis' discovery and eventual acceptance of their intersex identity—and it is a journey they warned the audience could be a bit graphic for some, as it involves medical records describing genital surgery.
Pagonis' parents were told something was different about their child when Pagonis was about a year old, but even they did not get full details. Pagonis' father remembers being told by three doctors at Children's Memorial that his daughter was born with "cancerous ovaries," which, in reality, were internal testes. At 11, Pagonis underwent genital surgery, where they were asked in front of their mother and right before anesthesia if they wanted to have the size of their vagina expanded. "It would be easier to have sex with your future husband," the nurse explained. Pagonis remembered getting into a bathtub after surgery and feeling the stitches, comparing the unnatural, crunchy feeling to a sushi roll.
The next few years saw Pagonis trying to be a "perfect girl." "I looked like success," Pagonis says in the film, "but just because no one ever told me the truth didn't mean I didn't feel the effects of it." Pagonis learned about androgen insensitivity syndrome ( AIS ) in a college women's-studies class and realized it described their experience. Things happened quickly after that: They found an online support group for people with AIS, and their professor introduced them to another intersex person. "'Intersex' didn't sound very normal," Pagonis remembered thinking, and they swore they would never tell their secret to anyone.
Clearly, Pagonis is no longer about secrecy, beginning their lecture by affirming their nonbinary identity as a part of their commitment to being intersex. "I could choose to be binary if I want," Pagonis explained, joking that got they got pretty good at makeup in their teens. Their lecture covered some basics of gender identity; namely, that it is not biology. "Gender is in the clothes that we wear, in how we carry ourselves," Pagonis said, describing the 30+ varieties of intersex as "a rainbow between" male and female. They also clarified that intersex is not the same as trans identity, though there is definite overlap between the groups.
According to Pagonis, there are a few main ways intersex people discover their identity. The obvious is having noticeably different genitalia, but many people find out when they never undergo puberty, and some never find out at all. Pagonis mentioned a 70-year-old person who'd fathered four kids who underwent hernia surgery only to find out he also had a uterus. They explained that fetuses all begin as female with indeterminate genitalia. For some fetuses, a gene activates causing the indeterminate genitalia to morph into traditional "male" parts. Others develop the incipient female genitalia—still others may stay in between. Being intersex, Pagonis pointed out, "has been around since the beginning of time."
Intersex people historically were revered across cultures, Pagonis said, recognized by the ancient Greeks and Egyptians, Hawaiians and Native Americans. Even the Torah contains five genders. Pagonis pinpointed the shift towards intersexphobia to the Middle Ages: prior to that, God and angels in Christian theology were considered superior because they were genderless. Pagonis connected 20th century culture's need for standardization to increased surgical intervention on intersex people. John Money, one of the most notorious doctors treating intersex people, was behind the crass quote, "it's easier to dig a hole than build a pole." While in some ways his surgeries were gender-affirming, similar to surgeries trans people desire today, for intersex people they were downright oppressive. "If you don't fit, you get cut up in this society," Pagonis said.
Yet intersex conditions are extremely common. One in 200 people may be intersex, on par with the number of redheads, Pagonis said, and by including certain other, more common traits, that estimate changes to one in 50. Touching on the state of intersex activism, Pagonis explained that while activists in 2006 pushed for intersex to be described as a "disorder," the community does not accept that terminology. Although Pagonis said that doctors claim that activists are just an "angry minority" and large "silent majority" of intersex people feel their corrective surgery was helpful, they pointed out that the angry minority is hundreds of people. Almost no one, they said, is on the side of surgery.
Pagonis highlighted the first birth certificate and passport to acknowledge intersex identity as recent progress for intersex rights. They offered resources such as organizations and online support groups for intersex people, and talked about three points intersex activists stress: never impose surgery without consent, respect the gender identity and follow the lead of intersex kids as they develop, and make surgery and hormones available for those kids and adults who want it, but don't push. To be a good intersex ally, Pagonis suggested befriending intersex people, and advocating against surgery and for proper document markers. They also took aim at transphobic bathroom laws. "Technically, if I went to the bathroom in North Carolina, I'd get a ticket," Pagonis said.
During the Q&A, Pagonis often compared intersex identity to other marginalized identities. An audience member was curious about whether the historical narratives discussing intersex people were still valuable despite not being told in the first person. "For many oppressed people, you never hear first person stories," Pagonis said. They extolled the value of collecting the stories of intersex people today, but also said the old stories were still important, because they help people understand that intersex people "weren't always subject to horrible things."
Pagonis said many of the ways queer communities can welcome intersex people are similar to how to be trans-inclusive: don't assume identity based on biology, ask pronouns, don't assume all lesbians have the same body parts or that everyone might have a tampon. "It crushed me for like 15 years," Pagonis said about not getting a period.
When asked about informed consent, Pagonis explained that even parents aren't often told why their child is having a procedure. Medical recommendations about intersex surgery suggests that parents knowing the surgery involves their child's gender might subconsciously treat their kid differently. Pagonis' own parents didn't know exactly was happening, they pointed out. And perhaps it shouldn't be up to parents anyway. "This country doesn't care about children," Pagonis said, noting the United States hasn't signed the UN Rights of a Child Document. They also stressed that doing nothing about intersex conditions might result in a better outcome than surgery.
"We need to start breaking down binary ways of thinking," Pagonis said. "There are as many options for gender as there are stars and colors in the universe."
