Carter Hemion

Navigating rare disease while asexual and queer I have found a lot of relief and comfort in finding words to better understand myself and to connect with people who have shared experiences. For me, some of those words include queer, classical Ehlers-Danlos syndrome (cEDS), disabled, and asexual. Learning there are other people like me in the rare disease and LGBTQIA+ communities and connecting with them has brought a lot of new strength, joy, and friendship into my life.

I am a writer based in the Pacific Northwest. I joined Medium to create a personal blog to share my stories and to write about the topics that matter most to me. These include issues like LGBTQIA+ equity and rare disease advocacy because of my personal experiences as a queer and non-binary person with multiple rare diseases.

Compared to the general population, LGBTQIA+ people are more likely to have a disability. According to 2020 data, 36% of LGBTQ+ adults self-reported having a disability. Rates were higher for transgender people, with 52% of transgender adults reporting a disability. Intersex people report higher health disparities than both the general population and their endosex LGBTQ+ peers. Health disparities and barriers to equitable care can be exacerbated for individuals with other layers of marginalization.