In honor of Intersex Day of Remembrance, Fluide's Caitlin Menor recently had the privilege of speaking to intersex activist Sean Saifa Wall about his work and dedication towards intersex justice and awareness. Wall, an NYC native, is currently based in Manchester, England, as a Marie Skłowdoska Curie Fellow for the Intersex-New Interdisciplinary (INIA) Project. Wall is also the co-founder of the Intersex Justice Project, which pressured Lurie Children’s Hospital in Chicago to issue an apology to intersex patients that they have harmed in their formative years.

Tell us about yourself and your background!

SSW: My name is Saifa, and I am an intersex activist and researcher. I have been doing activism work publicly since 2004. I was privileged to know some of the first pioneers of the intersex movement, who were very active in the Intersex Society of North America. I’ve served on the board of InterACT, a legal and board policy organization that fights for the rights of young intersex people. I served on the board for three years before co-founding the Intersex Justice Project, a grassroots project by intersex people of color that seeks to end unnecessary surgeries on intersex infants and children in the US. 

In addition to being an intersex activist, I am also a visual artist. I’ve also been a researcher as long as I’ve been an activist. I am currently living in England because I am a Marie Skłowdoska Curie Fellow based at the University of Huddersfield. My fellowship is one of ten funded positions by the European Commission looking at different aspects of intersex rights and experiences.

What drove you to begin your activism and focus on your activism? 

SSW: I look at my activism as survival because I feel what happened to me, the lies that were surrounding me and what happened to my body, and the subsequent health issues that I’ve had resulting from being castrated as a younger person - I didn’t want that to happen to anyone else. Although other people in my family have intersex variations, the people who were assigned male weren’t castrated whereas the people who were assigned female were. And you know, I’m the most vocal in my family. Other people in my family are not out. Listening to the stories of other intersex people who have been harmed by these medical practices - which are the equivalent of sterilization and different kinds of medical violence - just moved me to action. For me, as long as I live, and as long as I have this intersex body that has been scarred, I’m gonna keep fighting.

Today, from where do you draw your inspiration for your continued activism? What issues are your primary concern at this moment?

SSW: With the founding of #BlackLivesMatter (BLM) - sort of like the global reach of BLM - I have always been discussing issues about how intersex relates to race, how intersex relates to queerness, how it is in conversation with these other identities. I am inspired by this generation of intersex activists, who not only are activists but are models, content creators, and writers. I draw inspiration from intersex youth leaders all over the world. They started a global movement where people in different regions are speaking up and sharing their stories so bravely - I draw inspiration from these young leaders because eventually, I won’t be around. 

As I get older, it’s about passing the torch and occupying different positions in this movement - to fund and support the younger generation and younger leaders; to get out of the way for them and leverage the privilege I have to generate more money for this movement and get into places that are inaccessible for many in my community. I’m not a big reformist, but I feel like it’s time for me to occupy a different position. I want to contribute to the next generation of leaders who will take the reins and do something different.

I also think we should not be tailoring our movements towards trends. It’s interesting but also very disturbing to see how recent movements align with media trends. We need to focus on these issues that are ongoing because of the disparities that affect different populations - it doesn’t stop.

What do you want to achieve for the intersex community through your activism?

SSW: What drives me to do this work continually is that I feel like we are soclose to achieving justice. Recently in Texas, the Austin City Council voted to condemn medically unnecessary surgeries on intersex children which came after the New York City Council passed an education that would generate affirming information about intersex variations for parents and patients. These achievements were made possible by the hard work of InterACT, but also activists such as Scout Silverstein (New York) and Alicia Roth-Weigel (Austin). We are winning. I feel like so much of this work is about liberation - I envision a world where intersex people are not stigmatized; a world where intersex people have the choice to be out or not. I feel like there is still so much shame and silence around having an intersex body or having an intersex experience. Even though the world can be cruel sometimes, I live for that tipping point where intersex people can say “This is who I am” without apology. I want to create an environment where people can feel comfortable and disclose how they were born without it being an issue. I feel that this pride and dignity can drown out the shame, silence and stigma that surrounds our experience of being intersex.

The term “fluid” is a widely-used umbrella term throughout the non-binary and intersex community. What does the word “fluid” mean to you?

SSW: Biological sex is fluid. And I think when we embrace the fluidity of biological sex, it lets us know what’s possible. I feel like being intersex is a part of us - a lot of people think of being intersex as “over there,” but it’s something that’s in all of us. Even though “male” and “female” are so arbitrary, if we look at them as opposite ends of the spectrum, intersex totally can encompass everything that includes male and female and everything along the spectrum. Another thing I like to say is that if you’ve been sexually active with anyone, you know bodies are different! It’s about challenging this male and female dichotomy. 

When I started transitioning from female to male and started taking testosterone, I was very invested in not only passing but being recognized as male. And when my body didn’t masculinize in certain ways because of my particular variation, it was very upsetting for me. And so, over time, I’ve learned to embrace a gender fluidity that I didn’t necessarilywant, but that I learned to embrace for my survival. I also recognize just how much the category of gender is made up. Human beings always want to classify things, like gender, race, etc. but there’s so much variation and fluidity in all of our bodies. When I embrace gender fluidity, I’m not oppressed by the binary. If people misgender me, it’s not about me - it’s about them.

I wonder what becomes possible when we embrace the fluidity in ourselves, in our gender, in our bodies, in our sexual orientation? Everything becomes possible. These societal restrictions that breed conformity imprison us. 

At Fluide, we aim to include the trans, non-binary, intersex, and genderfluid communities by creating versatile products that promote free-flowing self-expression. However, people are also fluid in the way that they each have different preferences on how to express themselves. What is the most meaningful form of self-expression for you?

SSW: The first word that came to mind was my hair. I take risks with my hair - I’ve had locs, an afro, worn it short, worn it long - and where my hair is now in locs, it speaks to a legacy of resistance. Especially living in England, the same country that colonized Kenya - the Mau Maus fighting against the British had locs. That’s how the term dreadlocks came about - from the British! And so, for me, my hair represents resistance and nonconformity. 

I also express myself through writing. I spend a lot of time alone - I be by myself! Whenever I write or post, I try to be thoughtful about what I write and examine it from different perspectives. I want my writing to reflect the nuance that I try to bring to different contexts and situations.

The COVID-19 pandemic hit hard on many folks in the LGBT+ community, specifically regarding mental health. What keeps you going through these hard times? What do you do to stay motivated and keep going?

SSW: There are a few things - the first thing is my relationships. I feel that my relationships with my chosen family have kept me sane throughout the pandemic. Everything felt like it was falling down, and I feel like we are living through a collective trauma, and people respond differently to trauma. Sometimes people are in denial. Sometimes people become hypervigilant - there are many ways that people act out. 

I’ve made it through this past year and a half with the support of my chosen family and spirituality. With this life, you don’t know what the next step is, but my approach is, “If I died today, did I do everything I wanted to do? Did I tell my loved ones how much they mean to me? Was I living life? Was I getting out and seeing the sun? Did I spend time with friends?” I reassessed what reallymatters to me. 

I am also a somatic practitioner, and I’ve been doing somatic awareness work for over eight years with people. And I see the grief that people are holding, and I see the grief within myself. It’s wild and dissonant to be present at this time. At my lowest points, another thing that kept me through the pandemic is my dog. He gets me out into the day, and he has needs. He needs food, water, love and cuddles. Caring and committing to another living being has been life-affirming for me.

What does Intersex Day of Remembrance mean to you?

SSW: Intersex Day of Remembrance (IDOR) is dedicated to Herculine Barbin who was an intersex person who lived during the 19th century in France. They were content to live as a woman but based on their genitalia, they were forced to live as male by the courts. Unfortunately, after being forced to live as male, they committed suicide. Theirs is one of the first memoirs written by an intersex person that was later translated from French to English by the philosopher, Michel Foucault. IDOR recognizes the horror of Barbin’s story but also the bravery that is required to tell your own story despite erasure in the law and via medical institutions. 

For me, IDOR honors our dead and recognizes the continual resistance intersex people are engaged in for our dignity and wellbeing.

For more about Sean Saifa Wall and his work, please visitseansaifa.com. For more about the Intersex Justice Project, visitintersexjusticeproject.org. For more about England’s INIA Project, visit  intersexnew.co.uk.