In the third grade, I started an “I Hate Pink” club for girls that hated the color pink. I despised wearing dresses, so I forced my mom to let me buy clothes from the boys section. I even convinced her to let me shave my head, despite being ridiculed for how much I “wanted to be a boy.” At the time, I didn’t think I did. I just wanted control, and I wanted to be comfortable. I didn’t know who I was, but I definitely knew I wasn’t someone who wanted to present as feminine.
After my father passed away when I was ending middle school, I grew my hair out again. My mother became my full-time caregiver and things were bad at home. Suddenly, my self-expression didn’t matter as much—only survival. While I was used to being reduced to my physical needs, it was at this time that those were neglected as well. With an abusive, alcoholic caregiver that had an ableist society on her side, every day was a fight to stay alive. It took all of my time and energy to escape that household, but by age 20, I finally did.
Almost three decades of my life went by before I could begin to unravel the knot that is my gender identity. Growing up a disabled person and wheelchair user who experienced extreme caregiver abuse, it took me until I was nearly 30yearsold to be safe enough to believe I even deserved an identity to begin with.
For disabled people who require assistance with hands-on personal care, the battle for our autonomy is a never ending journey. Most able-bodied children don’t get to decide what clothes they wear, or how they cut their hair until their parents decide they’re old enough. Little by little, children are given choices that reflect their tastes, and that’s how identities are formed. Disabled adolescents often have to fight their parents or caregivers for these autonomous choices until they move out on their own—which some adults are never able to do.
When you’re constantly fighting the stigmas that society places around needing physical care, such as how burdensome or tragic it is for the parent to even have a disabled child, our own identities can easily fade into the background. For me, my entire existence became a scapegoat for my parents. The focus was always on them and how hard it must be to care for me. This kind of ableist view of my worth from society led to my livelihood being reduced to merely my physical needs.
It’s not just that my choices for my body weren’t respected, most people never even considered that I could make choices in the first place—or that I needed to. My parents were particularly neglectful of my mental and emotional needs, despite understanding that my disability was purely physical. It was the society around them. Every time a friend or family member praised my parents for being saints for having me, the more my own voice faded into the background.
This experience isn’t exclusive to disabled children, either. To this day, society often views disabled people as less-than, and this is reflected in pop culture, art, and the news. Because of these ableist views, there are very few queer or trans disabled people in the media in general. Fashion isn’t made to cater to disabled bodies, limiting our options for our physical expression. Since the world thinks that we can’t possibly be queer, trans, or conceptualize our identities, there aren’t access tools for us to begin exploring. Since we don’t have visible trans disabled role models, we don’t even know that it’s an option.
The ableist notion that physical disability equates a lack of intelligence followed me well into my young adulthood. At the age that most people get their first sex-ed lesson, I was pulled out of class to do physical therapy instead. Since disabled people are assumed to be asexual, I was never given a sex talk, and the school system hid me from sexual health. As I was reaching puberty, I became more and more confused, and I began fighting back against the choices that were made for me.
It wasn’t until I created a truly safe life that I was allowed to unpack the internalized ableism I had acquired and explore my gender identity. I hired personal assistants to help me live my life independently, and for the first time ever, I was in charge. I hired people who not only respected my autonomy, but celebrated it. After spending five years building a life, dating around, and chopping away at the ableism others put on me, I finally began to learn who I was.
Those who aren’t able to leave the homes of their parents are often stuck in the shadows of their carers well into adulthood. All queer and trans people grow up an unauthentic version of ourselves, but to be disabled and trans requires internal work that isn’t just confusing, it’s exhausting. When you exist in a world that doesn’t see your life as valid, it takes twice the effort to speak up for your gender or sexuality. When you’re merely surviving and tiptoeing around your carers, it’s easy for your self-expression to be put on the back-burner.
The lesson we all must learn is how to unpack what is ours and what has been put upon us. Society painted me as a burden, a tragedy and undeserving of autonomy. I have taken that paintbrush and created a beautiful life where being disabled isn’t a bad thing.
I’ve surrounded myself with people who love me for the disabled person that I am—not in spite of it. Now, I get to pick out the clothes I wear every morning. I cut my hair how I want and my friends and partner celebrate me. I have taken back my autonomy in every way, big and small. I had to start there before I could even begin to unpack the fact that I am non-binary, and that I deserve to express myself fully. And after a lot of work and a lot of therapy, I’m finally getting there.
Thank you for sharing your truth! This is a powerful message that needs to be heard and processed. I hope to read more of your work.
Thank you for summarizing your thoughts so honestly. I’m glad your in the place you are now:)
Love this and so much resonates, thank you! (Autostraddle you are smashing it this week and it’s only Tuesday.)
Love this piece! Thank you for articulating so nicely the balancing act of physical and emotional needs that disabled people, especially those with high needs constantly have to do. I’m so glad you have been able to create a safe life for yourself, and can’t wait to read more of your work!
You write great articles