Written by m reader.
Art by Jenica Caudill.
I’ve lived with chronic pain my whole life, but didn’t realize it was not a universal experience until recently. I’ve also (apparently) lived with two intense chronic GI illnesses my whole life, but never realized that my constant discomfort was out of the ordinary. As my symptoms and flare-ups have been diagnosed, re-diagnosed, and treated differently, I began to connect more with the disabled community. I was deeply worried about using the term “disabled” for a long time because I didn’t want to co-opt anyone else’s identity or force my way into a community of which I wasn’t really a part.
But then I began talking to more disabled folks about their day-to-day lives and experiences. So much of what they shared deeply resonated with me and my bodily experience in a way that nothing had ever resonated before. Even though I’ve intensely studied dance, I didn’t feel the level of bodily understanding and togetherness that I felt when I was connecting with disabled folks; specifically those with chronic and invisible disabilities.
Because of my constant discomfort living in my body, I’ve been to a lot of doctors who have done a lot of things to/for/because of my body.
Sex has always been deeply intimidating to me. It has always been something scary looming on the horizon, something that I was too anxious to engage in when partnered. I used to chalk it up to being a generally very anxious person and my fear of underperforming. Then, a while back, I came across an Instagram post by Sharona, @hot.crip. (Seriously, go follow them if you haven’t already.) It read:
“Consent (both ways) is so important with care. I feel like sexual consent is discussed so frequently, but medical/illness care consent is rarely discussed. In both situations, you are incredibly vulnerable with your body. Comfort care needs are often diminished by medicalization. All care work should be offered with consideration for the way the receiver feels comfortable…”
Because of my constant discomfort living in my body, I’ve been to a lot of doctors who have done a lot of things to/for/because of my body. Very few doctors have prioritized my comfort. It seems that they saw my young, fat, sick body as an invitation to do whatever they wanted to do because clearly I had no idea what I needed. I don’t remember a time in my childhood or young adolescence where a doctor paused to check in on me. And so, my view of how my body was treated — and my needs in relation to my body — shifted. I began to celebrate the doctors who did the bare minimum of telling me what they were doing. I was eternally grateful for the nurses who acknowledged the fact that I was anxious, even if they didn’t do anything to support me through it. I gave up asking for what I really needed, and resorted to having panic attacks in front of nurses and apologizing for it. All because no medical professionals considered care for my body.
Earlier this year I had one of my first legitimately caring medical experiences. I went to a gynecologist for my pap smear (a year late because of the aforementioned anxieties). I was clear about the fact that I have vaginismus and it was going to be a painful process for me. My gyno was clear and caring, and made sure I had time to ask any and all questions. Even when she couldn’t complete the smear because of my pain, she was deeply kind. She sat with me while I cried. She offered to postpone the appointment and gave me options for medications I could take to make it easier. She sat with me until we had a mutually agreed-upon plan, and I was more emotionally stable.
Experiencing that kind of care for my body in a situation that wasn’t “successful,” and was both anxiety-inducing and painful for me, was a game-changer. It made medicine more accessible not only to my physical needs but my comfort and care needs as well.
Enter sex. Let’s start with the basics: I’m queer, I’m fat, I have vaginismus, and I’m shy. There’s already a lot to work out if I’m trying to be physically intimate with someone. But, when a partner and I have been able to check off my needs in those realms, I still have many reservations. For years I didn’t understand why I didn’t feel like I could fully relax and be myself in bed in partnerships that felt like they were checking all my boxes. So, when I read Sharona’s post, suddenly, everything clicked. I am uncomfortable and often reserved in my sex life because my body has never been cared for in intimate settings before — largely due to the experiences I’ve had being a disabled person.
…able-bodied people sleeping with disabled people must make intentional space to address their own biases, co-construct intimacy with their partner(s), and engage in deep care work.
I hope that I can find ways to engage in sexual intimacy with folks who are willing to mutually care for one another as I embark on this healing and understanding process. As disabled folks have been saying for years, disabled sex is hot! But, it can only be hot when there is acknowledgment and care for what someone’s disability means to them. Therefore, able-bodied people sleeping with disabled people must make intentional space to address their own biases, co-construct intimacy with their partner(s), and engage in deep care work. They need to show love for their partners as disabled people without divorcing them from that aspect of their identity. This means that we, as disabled folks, have to do the work of recognizing why and how we hold these views of sex. We must engage in solo healing practices that support our intimate engagements with other people.
Ultimately, sex is not always an easy street for people to turn onto. We must care deeply about how sex feels, as well as how it affects our partners and changes based on the bodily experiences they’ve had throughout their lives. Sex can and should be fun and healing for those who want to have it, but we must first set a foundation of comfort, care, and safety beyond a mutual desire to sleep with each other.
About the Author
m is a white, fat, queer disabled preschool teacher, choreographer, and avid puzzler. They currently live in Seattle (unceded Duwamish territory) and spend their time befriending cats, karaoke-ing, and going on solo adventures around the PNW. M is only now starting to identify as a writer, something they’ve been passionate about for ages. They hope to continue writing about issues that feel meaningful to them and their communities.