According to Every Body, the new documentary from Oscar-nominated filmmaker Julie Cohen, experts estimate that 1.7 percent of children are born intersex. That number remains only an estimate, since so many intersex people have been told to keep their bodies a secret, or have been kept in the dark about their own medical histories.
The intersex community has for so long been inextricably linked to the trauma and shame that has inflicted upon on it. But in Every Body, Cohen (one-half of the team behind the 2018 Ruth Bader Ginsburg doc, RBG) makes it a point to empower and amplify the voices of the film's intersex stars: Viewers hear directly from filmmaker River Gallo (they/them), Ph.D student Sean Saifa Wall (he/him), and political consultant Alicia Roth Weigel (she/they) as they recount their past tumult around their intersexuality and how it led to their activism today.
Despite their dedication to the cause, there's still some fear and anticipation as the film makes its debut. "I think it's completely warranted to be scared out of my mind that a documentary is about to be nationally released where I talk about my genitals," Gallo tells A.frame
That anxiety is tempered by their hope that the film will do the educational work of spreading awareness about the issues surrounding intersex people like themselves. "I think what it's going to do for the intersex community transcends beyond any of the fear that I have as a human about being vulnerable."
A.frame: How did Julie Cohen find the three of you and convince you to participate in this documentary, where you would be sharing so openly about trauma and your medical history?
ALICIA ROTH WEIGEL: Julie reached out to me via email just over three years ago to discuss my involvement in the film. I had almost made another doc with a well-known filmmaker a few years prior, but the process had felt icky and exploitative — which is unfortunately not an uncommon experience for intersex people working with media. I'd backed out of that project, so I definitely had some trepidations when considering Julie's proposal. But Julie very quickly put me at ease. She has a track record for amazing profiles of political activists in the realm of gender equity, but she also demonstrated a real desire to showcase our stories, rather than forcing her own narrative, and she seemed genuinely interested in supporting our cause. When she mentioned she wanted to include multiple stories to show the breadth of our movement, Saifa was my number one pick. He is the 'OG' of intersex activism, having been in the fight for over a decade before I first came out.
SEAN SAIFA WALL: I have had my share of media opportunities and have found that some journalists could be extractive for the purpose of the story. I found that Julie was different. She came with a vision, but she had also educated herself on the issue which I appreciated, and was still open to learning. I have shared my stories many times on different platforms, but I felt that the combination of Julie's care and her wonderful crew allowed me to take more risks with sharing my story in a more meaningful way.
RIVER GALLO: I had a lot of reservations to join the documentary. As a filmmaker, it was hard to fathom sharing my story where I didn't have creative control — as I did in my short and upcoming feature film, Ponyboi. Also, I was used to embodying characters as an actor, and not just playing myself and being completely transparent about my life history and relationship with my family. However, I said yes because a part of my activism is sharing my story and taking every opportunity to share my story, even when it's uncomfortable, because I know it can save someone's life. I view being vocal about being intersex as an act of service to my community and to humanity. I found out very soon into filming that Julie is a person and filmmaker with so much joy, integrity and love that she created a safe space on set for me and all of us to feel comfortable and be authentic which was such a rare delight.
There is a burden on-screen that you all carry with you in this explanatory work that reflects the double-edged nature of representation. You want to be visible to increase awareness and support for intersex people, but you also now have to educate everyone about your lived experiences. How do you balance these things?
WALL: I think your question is really insightful. It makes me think about Sojourner Truth, who bared her breast, to say, 'Ain't I a Woman?' For me, my people were not considered human, and the generations of people who came before me fought for my humanity. And by the process of medicalization, I was deemed inhuman. Activism is reclaiming my humanity and fighting for the humanity of other people, particularly as a Black intersex person. Intersex people have been dehumanized in medicine. We've been objectified in medical photography. There's voyeurism. It's powerful for me, in my naked body, to be looking at the camera to say that I'm removing this medical gaze. This is about a bigger push toward liberation.
Alicia, you've worked in politics, particularly in the sphere of advocating for legislation. What does it feel like to be part of this documentary where you aren't working for someone else's campaign, but rather speaking up for yourself?
WEIGEL: I ran so many other people's campaigns and have shown up to so many other folks' protests, because I always had this thought that if intersex folks are showing up for these other communities that would be reciprocated. And if I'm being real and honest, that has not always been the case. There is this tendency with certain communities, they win certain rights or freedoms and then pull the ladder up with them, or they wipe their hands clean and say, 'Oh, I got mine. Now I'm good.' Unfortunately, I think certain people are starting to wake up, whether it be the reversal of Roe v. Wade, or the threats we're seeing to basic things like gay marriage that we all took to be a constitutional right that we're now seeing threatened at the state level across this country.
Your original question was about autonomy, and all of this is about that. It's all about autonomy — whether it is someone trying to access free and fair abortion, whether it is someone trying to get gender-affirming care as a trans person, whether it is a sexual assault survivor who is trying to protect other people from going through what they've been through. It's all about robbing us of our right to make decisions for ourselves, about our bodies, and about our futures. People look at us like some niche issue or some community they've never heard of, but we just haven't been given a platform. Our stories just haven't been shared yet. We need to start thinking as a collective people who have been wronged by those who hold power and seek to keep us divided. We'll realize that we're all fighting for the exact same thing. I have been showing up for all these communities my whole life, and it's time for them to show up for us.
Can you talk about how the political message of this film has resonated across different audiences?
GALLO: The energy in the room at our premiere at Tribeca was so palpable. There were so many intersex people, so many people from the broader LGBTQIA+ community in New York that came and showed up for us. People were actively engaged with the film. We were laughing together, we were crying together, we were clapping. We could all feel that we were witnessing something as a queer community that was historic and vital to our own existence, and to the elevation of where the future of the queer community needs to go. This film reaffirms and validates all of our collective work, and it gives us a glimpse into a vision of a future that we know is possible. It gives us this extra boost of energy to know that our efforts have not gone in vain. We're at the right place, at the right time, and this movement is powerful.
Despite the obvious darkness of this film, joy really shines through in the making of this film. How important was that for you?
WALL: Based on my own experiences, there's a deep part of me that believes that I can't experience joy. Whenever I do big things, I always have a thought or a feeling that I'm gonna die before I see that big thing come to fruition. Like before going to Tribeca, I thought, 'Oh, I'm gonna die.' There's a really quiet part of me that is so grateful that I have lived long enough to see this moment. I'm thinking about folks who organized the first Intersex Society of North America who now get to rest. To see this vibrant flowering of the global intersex movement is really moving, and it's really humbling. I don't know if the word is joy. But I think there's a word of gratitude to God, gratitude to ancestors. Gratitude is the spirit that allowed me to really just be here to witness until I'm not here anymore.
By Jireh Deng