Intersex activist and filmmaker Pidgeon Pagonis is incredibly tenacious. The inspiring Chicagoan has been an active voice for the intersex community for the past five years since publicly launching the intersex justice movement #intersexstories on Twitter in 2015. After coming across their work online I was fortunate enough to have met up with last year in Sydney, where they were speaking at the Australian Medical Students Association’s (AMSA) Global Health Conference (GHC) 2019, one of the many conferences Pidgeon has been booked at to share their knowledge and educate others about intersex rights.
Despite the increase in media attention towards intersex narratives, there is still very little that is known by the wider public about intersex people, and the term ‘intersex’ is often misunderstood. So, what exactly is intersex? Intersex Human Rights Australia defines intersex as, “Intersex people are born with physical sex characteristics that don’t fit medical and social norms for female or male bodies.” It is important to note here that this definition does not specify sex, sexual orientation or gender identity. Pidgeon Pagonis personally identifies as non-binary, however, intersex people can identify as cisgender, heterosexual or not. There is no one particular way of identifying as an intersex person.
Pidgeon has played a vital part in generating awareness about intersex narratives, and the injustices faced by intersex people worldwide. They are a big advocate for ending intersex surgery, and have repeatedly spoken out about the damaging physical and mental effects that forcing surgery onto young intersex kids can have. Join us in conversation with Pidgeon Pagonis.

You’ve achieved an incredible amount in the past few years. In 2015 on Intersex Awareness Day you launched #intersexstories on twitter. What inspired you to take your own personal story global and share it with the public?
Honestly, Chicago. The activist community in Chicago, at least those who I am connected to, is like a big family that really is willing to show up for each other and help each other out. Rachel Perotta (@Plussone / rachaelpr.com ) is someone in Chicago who does PR for social justice movements in the city. She reached out and offered to share her skills with me (for free!) for the intersex justice work I was doing. So we had a brainstorming session, and somehow we came up with the idea of doing a twitterstorm (which was another idea inspired by friends doing movement work in Chicago like BLM (like Mariame Kaba and Monica Trinidad).
I liked the idea because I believed it could help intersex people (who are sometimes not able to be out about being intersex) share stories, provide support, create community, and ultimately spread the message: #IntersexStories, not surgeries. When it came time to pick a hashtag, which is actually very difficult for intersex because A) it’s a long word and B) not many people truly understand it, I thought of something like #MyIntersexStory. Rachel thought that was too limiting, and came up with #IntersexStories, and bada bing bada boom, that’s how it happened.
At the launch, my friend Lynnell Stephani Long (who was the first intersex person I ever met after I discovered I was intersex at age 18), came over to my apartment and we did a live stream on Periscope. Then lots of people all over the world started using the hashtag to share their stories and it was a beautiful moment in intersex history, garnering a 4.2 million reach from 4,715 tweets and 1,277 accounts tweeting. People are still reacting to it today! On intersex awareness day in 2019, I saw people in countries like Germany and England with protest signs that said Intersex Stories, Not Surgeries!

What are some of the biggest misconceptions that you have faced as an intersex person?
That we’re “broken” and need fixing by doctors. That we’re better off with surgery to make us look “normal”. That there’s only two opposite sexes and genders. That one’s biology determines their gender. That doctors always have your best interests in mind. That intersex is a genetic “defect”. That we’re disorders, not people. That we’re incapable of making our own decisions about our genitalia, reproductive organs and hormones. That we’re hermaphrodites capable of impregnating ourselves. That intersex is the same as being trans. And ultimately, that intersex babies and kids don’t deserve the same human rights as others —namely “autonomy and self-determination over their own body.” You know, the usual stuff.

Despite all the difficulties that intersex people face, does it help to have an international network of support throughout the intersex community?
Yes, definitely. We rely heavily on each other throughout the world for support in everything from housing when we’re abroad, to picking each other’s brains about intersex human rights strategy and policy work. Since intersex people are not contained by any human-made border, it’s critical that we have a large network of intersex people connected across the globe.

For intersex youth who want to become more involved in the intersex community, how they can join this network?
I would tell them to go on Facebook and join the international and closed group called iSpace. It’s a safe space to get to know other young intersex people, and it’s run by my friend Amanda Saenz who works for InterACT. It’s a great place, something I wish I had when I was younger. Then, if they feel comfortable, they can also “graduate” and join InterACT Youth and be more public and vocal within the intersex advocacy and activism world. But it’s important to start in iSpace to get that support element first.
Has growing up in Chicago influenced your goals and desires as an activist to make changes for marginalized groups?
Definitely, growing up and living here has completely shaped who I am and how I fight for justice. When Chicagoans fight together, we win—and we don’t take no for an answer. I was lucky to attend a university in the city under the guidance of some amazing feminist social justice thinkers and activists in DePaul’s Women and Gender Studies Department. To come up at a time while so many social justice organizations were being created and different movements and campaigns were popping off, inspired by brilliant mentors like Mariame Kaba.
A turning point for me is when I saw the #ReparationsNow campaign—a campaign that fought for reparations for survivors of Chicago police torture—actually win. It really inspired me to fight against the children’s hospital here to demand they end what the UN has described as “torture” against young intersex people.

You’ve spoken at various conferences around the United States and internationally about intersex rights & history. Have you noticed a significant variation in the attitudes towards the intersex community reflected by geographical location?
No, not really. Almost everyone in every single audience—no matter where in the US or world—generally is down for intersex justice and liberation. When everything is laid out for them, and they are allowed to actually see behind the facade that is pumped out by surgeons’ PR firm, it clicks for them.
Intersex kids are human beings who are having their human rights trampled upon just because we look different. The majority of people aren’t down with that. It’s only a handful of surgeons—who profit from these medically unnecessary surgeries—who still support this backward and outdated protocol that got started in the 1950s.
You’ve acted as a role model for so many. Are there any people who have acted as a role model for you, or have helped shape your personal path?
Yes, so many! I didn’t find out I was intersex until I was 18 and put the pieces together after learning about intersex in a college class. Shortly after, I met Lynnell Stephani Long, a speaker who was invited to speak at my class. She was the first intersex person I ever (knowingly) met, and held my hand the next few years as I struggled to come to terms with what the surgeon’s had done to my body over the course of my life. The way she bravely shared her story to millions (she was on Oprah and I got to be in the audience for the taping!) inspired me to feel confident enough to do the same one day.
There’s also people like Mani Mitchell in NZ, who I connected with early on in my journey of understanding. You can actually see us when we first met in Mani’s amazing and free documentary Intersexion. Mani really brings their heart to intersex work, and we connected on that early in doing something we called “heart work” at each international conference we attended together. We felt the activism piece was important at the meetings, but the healing piece was just as essential.
There’s so many more, too many to count actually. But a few names are Sean Saifa Wall (co-founder of IJP), Anne Tamar-Mattis (former E.D. of interACT), Suegee Tamar-Mattis (intersex doctor), Georgianne Davis (intersex Sociologist), Cary Gabriel Costello (intersex/trans sociologists), Kyle Knight (human rights watch researcher and ally), Bo Laurent (the founder of the ISNA), Morgan Carpenter (Australian Intersex Activist), Jim Bruce (Interface Project), Eden Atwood (Interface Project), and so many more. I’m sorry to everyone I couldn’t list.

There is still a long way to go for equality for intersex people, especially for those who identify outside the gender binary. As a non-binary intersex person, what are some of the greatest daily challenges you’ve encountered?
The biggest challenge is finding a reason each day, each moment, to live. I’ve endured experiences in my life that have left me with both physically and psychologically scarred. I’ve had the entire external portion of my clitoris (and perhaps more?) removed when I was 4 years old, my testes were castrated when I was not even one, and when I was 11 surgeons told me I was having bladder surgery and I woke up with a new surgically constructed (and very scarred) “vagina” and “vulva”.
While I’ve somewhat learned how to adapt (aka distract myself), I’m still not quite fully able to come to terms with the excavated body and mind which they left me with. While the scars on my body, those forming the folds of labia and tracing the mound of my abdomen, are faint and hardly noticeable today—my psychological scars are keloids.

As an incredibly talented filmmaker, you’ve already completed a few short documentaries; The Son I Never Had was awarded the jury prize at Outfest in 2017. Can you share with us your vision for your upcoming feature-length documentary?
TSINH was at Outfest, but didn’t win the jury prize there — it won it at a different film festival (North Carolina Gay and Lesbian Film Festival). I love a good documentary, so I’ve worked on creating two short docs. The first is The Son I Never Had, and the second is more recent, and called A Normal Girl. My vision is to get good intersex information in the hands of people. I know that not everyone learns best from reading, so that’s why I also like to work on making films. With the feature-length, it seems plans may be changing and we may now be working on pitching it as a multi-episode one-off series that explores multiple facets of the intersex community and movement. Stay Tuned!
Follow Pidgeon Pagonis on Instagram to stay up to date with their adventures.
Photography & Interview: Sahar Nicolette @theyshootthem
Read more: River Gallo: The Intersex Runaway Who’s Educating Our Minds and Stealing Our Hearts