As a disabled person who uses a wheelchair as mobility device, has spastic Cerebral Palsy and needs Personal Care Attendants throughout my day, I have become extremely well-versed in adapting, changing and incorporating things into my everyday life. People often like to say: “your disability doesn’t define you,” but for me, my disability totally defines everything about who I am and how I navigate the world around me — whether I want it to or not.
I have become a master of explaining my day to day needs to people, and making them seem like nothing at all, even if they might look uncomfortable or scary to those around me. From getting me dressed, showered and fed, to inserting catheters into my body, I know how to handle all of that. I know that I can’t do any of that by myself, and that I need help. I know that all of this is a part of my disabled experience, and so I learn to make it a part of my day (sometimes, begrudgingly!).
The same could be said for my sex life. I have learned (through a sometimes painful trial and error process full of ableism ) how to market my disability to the LGBTQ2S community as something that is viable, sexy, fuckable and fun. My disability and my queerness are inextricably linked, and so I know how to allay the fears and discomforts of men who maybe have never really experienced the outright, raw sexiness that my crippled body has to offer. I can guide them through their first times with a disabled lover and leave them wanting so much more… seriously.
Recently though, something happened to me that made me question everything I thought I knew about my disability, my queerness and my sexuality, and I want to talk about that. I was getting a lot of urinary tract infections (this can be annoyingly common when you use catheters), and every time I would go to my doctor, they’d set me up on a course of antibiotics and the infection would eventually clear up.
One time when I came into my doctor, I was complaining about diarrhea and stomach cramps. She said it was probably nothing and not to worry about it. I listened to her and tried to resume my daily life of being queer , crippled, and sexy as fuck, but something just didn’t feel right. It’s funny, when you’re disabled you learn to differentiate between “disability pains” that you’re used to, and something that is “really wrong”.
That weekend when I couldn’t stop pooping (I know, so sexy, right?), I knew I had to go the hospital. This is always a weird moment when you’re disabled — like, you knew eventually you’d be going there again, you just never know when that will be or why. As I was rushed into the emergency room, I was calm, cool and collected. I had been here before, and I knew that I would be okay. I was totally flirting with the EMTs in the ambulance, hoping to get a number (I mean, the cute one who was riding with me just saw me shit myself, so I figured that my disability wouldn’t be a huge deal-breaker). I let the doctors, nurses and orderlies do their thing to discover what was wrong. As I laid there, my crippled body crumpled on a gurney in an adult diaper (I can make anything look hot), I watched them work.
A couple hours later, around 3 a.m., the doctors told me that I had C. Difficile — a gastrointestinal infection that is characterized by diarrhea and can be fatal if not treated right away. Initially, when they told me the diagnosis, I kind of smirked and thought: “Well, that’s just another thing I’ll have to adapt to.” It wasn’t until they officially admitted me that the smirk turned into a frown.
As I was wheeled into my hospital room -—a quarantined unit for patients with severe infections — it all hit me like a ton of bricks: I was disabled and sick. WTF? I broke down in tears. I wasn’t crying because I’d be in there for a few days. I wasn’t crying because I was in an adult diaper, laying in an empty hospital room all alone. I wasn’t even crying because I was sick. I could handle all of that.
I was crying because I felt betrayed by my disabled body. I had worked so very hard to reach a place of “crippled comfortability” in this body. This body that my able-bodied queer counterparts didn’t want. This body that would never, ever be able to reach an ableist standard of queer male beauty. I had fought to be seen as one of them. Fought for my queer crip equality in spaces that were not welcoming at all. I sat in this body as it was told it wasn’t sexy enough, good enough or worthy enough for queerness. I could handle all of that. What I wasn’t sure of, was whether or not anyone would find me sexy now that I was both sick and disabled. I spent hours in that room texting friends and lovers asking them for both reassurance and help. I would ask them if I was still hot, would they still be with me, and if they still liked me. I was having all the internalized ableist feels, and I didn’t know what to do.
In between 5 a.m. blood draws, diaper changes and 2 p.m. naps, I kept playing this nightmare over and over in my head of having a hook up come over and having me poop on them uncontrollably. I imagined all the jokes I’d heard gay men make over the years about “dirty bottoms” and “tops into scat.” Well, now they’d be talking about me. I kept trying to find ways to talk about my newfound illness and my disability in a way that still made me endearing and desirable. I imagined myself saying, “So, yeah, it’s cool that you’re okay with me being a wheelchair user. Also, I might shit myself during our play. That’s not a dealbreaker, right?” At one point, I even tweeted:
WELL, GUESS I’D BETTER FIND A GUY INTO DIAPER PLAY.
All of the humor that I had used to bring someone into my experience of disability no longer seemed funny. This was all too real now, and I was scared.
Finally, after 5 days when I began to stabilize, the doctors sent me home. I was reluctant to go, worried that at any moment, something bad might happen. As I was leaving, the head doctor handed me his card and said, “If you have any questions or need anything, don’t hesitate to call or e-mail.” As I looked at his card, even though I was loopy on some serious pain meds, I smirked cheekily and thought to myself, “What if I sent him 100 e-mails on how to be sexy with C. Diff? What advice would he give me?”
Two weeks later, I was on the mend and feeling somewhat better. I was still alternating between diapers in my wheelchair; they were a comfort should C. Diff come back. I was also horny af, and I wanted some sex. My libido had taken a beating and I needed to get my sexy, seated self back. I went on an app and eventually found a friend for the evening. As he was on his way, my internal dialogue was screaming at me to not go through with it — to cancel everything and retreat.
Instead, I whipped off my diaper, sat straight up in my wheelchair, looked at myself in the mirror and said, “Shut up, Andrew. You’re sick, sexy and disabled. Deal with it.”
Andrew Gurza is a Disability Awareness Consultant and Cripple Content Creator whose written work has been featured in The Los Angeles Times, Men’s Health Magazine, Daily Xtra, Gay Times UK, Huffington Post, The Advocate, Everyday Feminism, Mashable, Out.com, and several anthologies. He was the only disabled cast member of MTV Canada’s hit show, 1Girl5Gays. He is the host of DisabilityAfterDark: The Podcast Shining a Bright Light on Sex and Disability available on Apple Podcasts, Google Play, and Stitcher. He has also guested on a number of other podcasts including Dan Savage’s Savage Love and Cameron Esposito’s Queery. He’s an accomplished voice on the intersectionality of queerness and disability. He travels all over the world talking about what it means to be a “queer cripple.” You can follow his work on Twitter @andrewgurza and can hire him at www.andrewgurza.com
