Each year on October 26, we celebrate Intersex Awareness Day. It is estimated that intersex people make up about 1.7% of the global population (about the same as natural redheads).
Being intersex means that a person is born with variations in their sex traits and/or reproductive organs, such as their genitalia, chromosomes, hormones, or visible characteristics like body hair and chest tissue. These variations do not match enforced ideas of the gender binary.
Because intersex folks have bodies beyond what Western medicine considers “normal,” we’re often pathologized for our intersex traits. Being intersex isn’t inherently a disability, but as with anyone, some of us are also disabled. Some of those disabilities are independent of being intersex. And, some intersex people do consider themselves disabled due to how their intersex variation manifests. For example, Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH) can affect how organs including the kidneys, heart, and spine develop, which some individuals with MRKH view as disabling.
This year, the theme of Intersex Awareness Day is “Intersex Futures.” How can we truly work toward inclusive, joy-filled futures for all intersex people? In that spirit, I asked seven intersex and disabled activists what they wish more people knew.
Editor's Note: Responses have been edited for length and clarity. All subjects and the author of this story are in some way affiliated with interACT.
Being both intersex and disabled feel innately connected for me. As a child, I stood out. I didn't think the way other kids did, I didn't look the way other kids did, and I couldn't do the things other kids did. I felt alienated and confused by what made me different from everyone else.
After I started puberty, people began fixating on my appearance, calling me names for my facial and body hair. I was encouraged by the adults in my life to remove it, even though the removal was very painful for me. If instead they had asked me what I wanted for my body, or even told the other children not to make comments about my appearance, that would've meant a lot to me. By listening to me, adults could have helped other kids understand their own bodies and internal states, too.
Because my intersex variation was pathologized while I was growing up, I saw it as a "health issue.” I sought guidance and support for it in disability communities and was encouraged to explore the possibility that I was intersex. Eventually I found InterACT and they were beyond helpful! Once I started participating in the intersex community, I got a lot better at accepting my natural sex characteristics because I learned that there wasn't anything broken about me to begin with. It should've been my choice to keep or change them as I wanted.
My advice to young intersex and disabled people is to look for spaces that aren't going to medicalize you, that show compassion for your feelings and needs, and that respect your intersectional experiences! They're out there, and finding an accepting environment is life-changing!
I am disabled independent of my variation, and although I don't see my particular variation as disabling, I see the procedures done to “fix” me and change my intersex traits as disabling.
I had surgery when I turned 18, and that surgery was a cosmetic one that I didn't realize was entirely cosmetic. Because I have Ehlers-Danlos Syndrome, my healing was especially poor and I came out with some kind of damage to my stomach. I now live with gastroparesis. I have a lot of intolerances, as well as several other chronic pain conditions that [have] emerged. It does impact my ability to work, to take care of myself on a regular basis, and to feed myself. If I knew at the time that I was intersex and had a community, I don't know if I would have felt [socially] pressured to change my body in the same way.
Although I was offered a cosmetic surgery that I did not need, I was not [initially] offered an actually quite common surgery that I did need for my pain. People with MRKH often have pain in their uterine remnants. I had been expressing this when I was a teenager, but it was only within the last two years that I was able to have the surgery I needed to get those removed. Doctors often spend time trying to “treat” intersex traits in order to fit their expectations of what should be done rather than treating intersex individuals’ actual medical needs.
I want medical providers to know that many of us carry a lot of trauma, and what that looks like in medical spaces is often a distrust of providers. I think that's true for both intersex and for disabled folks, and especially for folks at the intersection of both. Doctors often don't believe our knowledge of our own bodies. I need providers to make the time to sit with me, to hear my concerns, and to let me take things at a snail's pace if that's what I need to do. The only person that I fully trust as a provider of care is myself.
My experiences being intersex and disabled are inseparable. I am disabled directly from being intersex, and then I have intersex traits that are not disabling but are still very pathologized.
Mostly, I always had this knowledge that I wasn’t developing “right” across every aspect of who I was. As I grew up, nobody seemed surprised when my puberty didn't seem to be going typically. They assumed that it was an extension of me being disabled in some way. A lot of my sex characteristics are defined as underdeveloped or infantile. What does that really mean? The way it’s phrased would make you think that you're stuck in time.
I went through Applied Behavioral Analysis (ABA) therapy as a child, which was very traumatic for me. A lot of what I learned growing up about my autism and about my disability was that you don’t talk to other people about it. It’s the same feeling of being both visibly intersex and visibly disabled. You constantly feel exposed, but at the same time pressured to hide who you are, and other people are constantly trying to “fix” you.
I think it's very easy to say that I wish people in my life had been more supportive. That is true, but it’s hard to be supportive when there's not awareness out there of what all of this means or what to do with it. Even the people who messed up and traumatized me weren't given many good options themselves. When I was put into ABA, that’s the only service that insurance would cover. The other option was sending me to a permanent home for disabled people. It all comes back to awareness, which then can lead to support.
Now, I want to reclaim being intersex and disabled as something that I am proud of and even happy to be. For the past several years, I’ve been making advocacy art. It’s a way of making our experiences, which so many people are still misinformed or don’t know about, something that people have to look at. It's also for myself. It's an announcement that we’re here, and we're not going to shut up about it. The first time I made public art felt like crossing a boundary. We’re not “supposed” to be doing this, and that's why I want to do it.
Between my junior and senior years of high school, I attended a Broadway intensive summer camp. Jacob Yandura, the composer of How to Dance in Ohio, was the arranger for the music that we were doing. We knew that he was working on something, but we didn't know what it was.
All summer, I felt like a really annoying, overenthusiastic kid sitting in the front of the classroom, constantly going, “Oh, I know the answer!” I confided in Jacob and his partner, Paul, who ran the summer camp. I said, “I'm sorry for acting the way that I do. I'm autistic.”
They were like, “Why are you apologizing?” I had a moment where I realized, Wait, they’re right. Why am I apologizing? That was probably the last time that I ever apologized for being autistic, which is a celebration within itself.
The last day of our summer camp, Jacob came up to me. He said, “I think you'd be great for a role in the musical that I'm working on. It's about autistic people, and we want to cast actual autistic actors to play these autistic roles.” I sent them a self-tape, and I got cast at 17 years old. The first workshop that we had was during my senior year of high school.
I identified as a trans man at the time. I didn't know that I was intersex. I realized that I was intersex in February of 2023, during one of our final workshops before Broadway. There are barely any openly intersex people in the Broadway community. When I came out as intersex, I realized that I might be the first openly intersex actor on a Broadway stage. I bet there are more intersex people, but they’re not openly intersex. On stage, our costume designer Sarafina Bush helped me include an intersex pride bracelet. That was a really touching moment for me. I wore that bracelet with pride. My version of Remy in How to Dance in Ohio is intersex. I will die by that.
I’m honored to be this representation for so many people, especially young queer kids and disabled kids. When I made my first introduction video, someone made a TikTok where they were crying. They said, “That is a Black, plus-size, disabled and Autistic actor on stage.” That was the first moment that I realized this is so much bigger than I thought. There's so many stories about intersex trauma, and I want to share stories about intersex joy.
Most of my experiences being intersex revolve around my experiences with disability. Because of my intersex variation, MRKH, I was born with only one kidney and total deafness in my right ear.
I experienced more pressure to be “normal” from audiologists than I ever did from specialists typically associated with intersex care. It’s called audism, the prioritization of hearing over deafness. I specifically didn’t get the CROS hearing aids that I have now, that I could have had as a kid, which are made for those with unilateral deafness, because [some] thought I should just learn to cope with it. I was blocked out of a lot of social interactions in childhood as a result because my peers were chatty and didn’t have the attention span to repeat themselves and be accessible for me. After school, I would decompress in my room for hours. I was so tired and overwhelmed from auditory processing. CROS hearing aids would have changed my life tremendously.
I get scared to advocate for myself [with] doctors. I'm always trying to be a nice, model patient. If you're going to be working with kids that are potentially intersex, disabled, or trans, you need to know how to work with people that have non-standard bodies. Most of it comes down to listening, supporting them, and acknowledging when you don't have the knowledge.
There are a lot of commonalities in being both disabled and intersex. I am constantly advocating for my needs, even though many medical and legal professionals might not fully understand the context of why I need the supports that I do.
For many disabled folks, cochlear implants and ABA therapy are used to “fix” something that needs to be “cured” or become “normal.” This is similar to the non-consensual medical interventions that intersex folks encounter at birth and at young age. In my case, the different surgeries I did get when I was young actually caused more pain and an increase in my UTIs, which resulted in more hospitalizations.
Before I went to college, I was primarily on Social Security Income (SSI), so I only had Medicaid for health insurance. In the whole directory of doctors in my county, none specialized in seeing intersex folks who have undergone major reconstructive surgeries as a child. This is what we see across the U.S., and it gets worse for adults, where much of the care is non-existent. I was told by my pediatric urologist a few months ago that there are likely only four urologists in the U.S. that could possibly see me.
One of the key issues is for intersex and disabled folks who are applying for [certain] disability benefits. The Social Security Administration requires all of your documentation from different providers, but many intersex people struggle to get their medical records. Hospitals often have a retention period of one year after a patient reaches 18 to 25, depending on the policy. Many people don’t know they’re intersex until they’re adults due to stigma and medical gaslighting. And for people who are adopted, obtaining these records may be impossible. Further, reviewers and providers rely on test results under the assumed sex at birth. [This system] doesn’t understand that intersex folks live with a variety of different hormone levels. Misinterpretation could cause the potential for an intersex and disabled person to be denied benefits when they shouldn’t be.
Being intersex and disabled isn’t about the challenges I face. It’s about the strength I’ve developed, the perspectives I’ve gained, and the person I’ve become. It taught me to stand up for myself and others, to question societal norms, and to appreciate the beautiful diversity of the human body and mind.
I found out that I was intersex several years before I became more disabled by my other chronic illnesses, so my intersex identity felt more relevant to my life at first. When I was first diagnosed in 2015, I had an incredibly hard time trying to discover any information about intersex community. It took a lot of research in archives of primary sources just to find out that intersex people did have a powerful history of activism.
Embracing my disabled identity was a parallel process in so many ways. As a wheelchair user, it’s really important for me to define my own disabled identity outside of the medical system or ableist ideas from an inaccessible society. For me, one of the most important parts of my disabled identity is the powerful community we build to fight for justice. In both the intersex and the disabled communities, we get really good at caring for each other. When you're part of a community that's been excluded from accessing knowledge about your body, your health, and your needs, it’s meaningful when we can redistribute power from medical authority back into the hands of intersex and disabled people.
Even though there are many similarities and solidarity between the intersex and disabled communities, sometimes I still feel complicated about whether I want to consider my intersex variation a disability. “In an environment with so much pathologization through Disorders of Sex Development language, it can feel difficult to publicly talk about our intersex variations as disabilities. [Like many intersex people, I have felt] like we have to be the representative of every intersex person ever, rather than having the space to exist with a lot of complexities. For a while, I wondered if I would be betraying intersex activism if I also acknowledged the fact that part of the reason I was losing my mobility was because of my intersex variation.”
In an intersex and disabled future, I want us to have space to celebrate all parts of ourselves without feeling like we have to hide. Not only do we exist, we’re out here existing joyfully, and I want our intersex and disabled futures to reflect the power of our liberation.
