I’m excited to share a guest post with y’all from the wonderful Color it Queer! She is a blogger who, like myself, is both queer and disabled. The intersection of our identities is not spoken about enough, and is very underrepresented. Sharing stories, like Jess’, is so important in order to bring awareness about our experiences. Jess has a great blog where she talks about being queer and disabled, and she also works with marginalized queer youth, which is super cool. Be sure to check out her blog, and post below!
I’m Jess, and my gender pronouns are she, her, hers. I’m queer and nonbinary and not afraid to be super open about it. You can probably tell from all the stereotypes I fall into, but my disability is invisible. However, you can kind of see it from the scar I have on my head.
I have epilepsy, making me a minority within a minority, a queer person with a disability.
Here’s my story:
It all started in third grade the day after Christmas when my grandma came in to check on me since it was late in the morning. I wasn’t sleeping in though, I had been having a seizure. My seizures were bad when I was young, where I’d have to go to the hospital to get them to stop. We eventually had my seizures under control with medication, but around the time I hit puberty, they started getting bad. By high school and into college I was averaging at about a seizure a month. These seizures were not “as bad,” where I’d literally be able to just go to class after. I had become “the sick child” where I’d constantly be getting more attention than my sister because my mom, who is a single parent, was always worried about me. For example, I couldn’t take a shower with her being home.
I graduated high school in 2013 and that summer, I started looking into brain surgery. It was always an option but something I think I saw as really risky and not worth it. My seizures were hard to deal with, but I was a “trooper.” I never wanted to miss a day of school or go home from a headache. I had been trying other things like tons of medication changes over the years, going gluten free, and even a diet that’s similar to the South Beach Diet. But eventually, I decided to look into surgery with my mom. After a bunch of tests to see if I’m a candidate (aka will I lose senses in my left-hand that I write with since my seizures are on my right side and the ride side controls the left?)
Months later, when I started college, I found out I was a good candidate and planned to have it the following summer so I could recover. Fast forward to the following May 29th of 2014 when I go into surgery that is two parts. The first part was the surgeon cutting open my skull to attach wires to provoke seizures and clarify exactly where the seizures were coming from. Luckily, they were only coming from one place and the second part was the surgeon taking that piece out. As for recovery, by the end of August, I was at an Ingrid Michaelson concert in Central Park and didn’t spend much time recovering, that I can remember.
Since I’ve had my surgery, I’ve only had one seizure, unfortunately, on a bus. That was 2016 I think. I have a horrible memory.
But you said you’re queer, right?
Yes! I didn’t come out until after my surgery. I had been questioning my sexuality, but didn’t come out and seek more professional resources (other than people saying you’ll figure it out, no worries) until my sophomore year of college. Well, actually, I came out to my mom as questioning and then that Spring semester started seeking support from my school’s Lesbian, Gay, Bisexual, Transgender, Queer Center. Then I came out as lesbian.
The following year of college, I moved onto campus into Stonewall Suites, my school’s LGBTQ/Gender Inclusive living community. This was awesome because even though my school was literally a 7 minute drive from my house, and my sister went there, I was there super often and didn’t drive, so it made sense that I lived there. I was finding so much community among other queer folks and got my first kiss ever that year. IT was very exciting time that included lots of new experiences at in my junior year, including starting my blog. Then my senior year, I really found my passion for activism when I became a peer educator at the LGBTQ Center. This connects back to the disability piece because along with outreach work, I facilitated a group called QBility, looking at the intersection of being queer and having a disability.
Glad you asked! Now, I’m still on medication and still deal with side affects that are a huge bummer, but I’m overall in pretty good health. And I also live across the country in Portland, OR. I moved here after graduating with a degree in Journalism with a minor in LGBTQ Studies for an AmeriCorps VISTA program with Veterans Services. I don’t recommend it (that’s another story–email me). I might be bias because my project closed after 4 months. Luckily, I have a rad job working at a youth home of LGBTQ Youth who are on probation/parole. I love it here in Portland, and the disability piece comes into play again with my lover. Portland has given me lots of firsts as a queer person, and it’s also where I came out as nonbinary. My lover and I have a rad connection around being sick. She taught me that some folks look at being sick as an “inconvenience” when she was diagnosed with mono and celiacs disease and worried that it’d change how I felt about her. But that’s far from the truth. It’s quite the opposite, as we bond over conversations of not feeling bad for being sick or just wanting to cuddle because I know where she’s coming from, and can still relate.
If you want to learn more about me or about the queer community you can check out my blog Color it Queer, here.