Disability and Desire

Today, we are going to embark on a topic I never really talk about much less write about: my sex life. Specifically, the lack of a sex life and how it relates to my experience as a disabled person. 

I am dark-skinned, so no one will ever see me blush as I write this — but I can assure you, if you could, you would see a crimson-red face. So why write about something I am so embarrassed about? Because I think it is an experience many of us have, and never tell our stories for fear of shame.

My entire reasoning for being a writer is to tell stories I am specially made to tell. 

Lily in Bubbles

We begin a few weeks ago while I was watching Scandal and a sex scene flashes across my screen. I burst into tears. This reaction startles and embarrasses me, which makes me sob harder and harder. The wails of my cry juxtapose with the moans from the screen, and I remember the scene is still going. And so I sit still crying and watching them hold and be held by each other, planting kisses along the ridges of each other's bodies. 

I’ve always been a sucker for television intimacy. The restraint of the limits of what can be shown on television in chaste but passionate scenes always sweeps me up in the trawl of the moment.  And I love it. And sometimes I think I’ll never experience it for myself again. 

Disabled and chronically ill folks are more likely to experience what I am describing: loneliness. We do not have the same resources, security, and ability to act on those feelings that our able-bodied peers might. In a world with rampant virus transmission being treated as normal, we get left in the cold. But it is also more than just the pandemic that rages on: it is the ablest gaze that views us as unsexual beings who are disabled and nothing else. 

When community members with physical disabilities such as limb differences post scantily-clad photos or are lingerie models, the comments they get — “She’s like a child. This is practically pedophilia!” said about model Sofia Jirau when she debuted

Sofia Jirau

for Victoria’s Secret as the brand’s first model with Down syndrome or Candace Owens remarks at seeing a campaign of models in wheelchairs wearing SKIMS bras commenting that it is ridiculous to see disabled people in bras–reflect our society's infantilization of anyone not able-bodied. With these combined, dating becomes a challenge.

Pansy St. Battie nonbinary model

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For those of us who are homebound, even meeting people is yet another challenge. 

Yes, there are thousands of dating apps, but they are often biased. People on these apps are more likely to swipe left on folks who use mobility aids in their profile images. To make matters worse the algorithm of the actual apps we use is discriminatory to people with disabilities and people of color because it programs in the biases of its users–the more people swipe left on your profile the lower your profile ranking becomes thus the fewer people who see your profile.

Leaving you feeling like you’ve swiped through your whole city and no one wants you. 

Disabled people’s partners often serve as de facto caregivers for support that we would otherwise not have; when in relationships, we may actually experience more independence and accessibility. Having a partner can help us rely less on aid and services because we could have someone to drive us to appointments, grab groceries, to help us with navigating our disability– having a partner gives you the extra care that you need to be able to show up and be independent of the systems that we have to beg for care. 

Platonic love and care can be a filler for these needs but in noticeably different ways in a system set up for partnership, not community. Relationships of a romantic kind can be the key to socialization, stability, and normalcy.  It is having more than one income, it is having a person to talk to–on my most intense pain flares when I am completely bedbound I often have no one to sit with, to lay with–when your entire world fits in your home it is refreshing and needed to have another person in this world with you. 

Normalcy is the need I most want to be filled right now. I want to feel like my age, I want to feel like I have a body someone else could look at with lust in their eyes. I want to plant my lips on lips that I know are taking every precaution for COVID that I am. I want to only think with our bodies and forget the constant fear of exposure. 

I have been in love before, back when I was in pain but it hadn’t completely taken over my life. I am grateful to have experienced it because I know many in my community who haven’t. People who have never been kissed. Haven’t felt the way bodies can melt into each other. And there is no shame in that. There is no shame in wanting to be wanted—I have been and I am desperate to feel it again. 

It is all kinds of embarrassing to come here and talk about the fact that I haven't had sex in a long time. It’s embarrassing to come here and say that I am scared people won’t want this body riddled with sickness and pain. Finding someone who understands I am disabled in a world that does not see me, does not want me, and actively has discarded me like I am nothing feels kind of like trying to find a doctor who will listen to me–nearly impossible. I am afraid! 

I am 26 and worthy of a romantic life as active as I want it to be. I don’t want to believe everything I feel. I want to stand in the symbolic street and say look at me! I am all passion and desire and pain and sickness. I need you to see the words disabled and desirable together. Drill it into your mind that I am a person worthy of kisses along the ridges of my neck. And of a hand to hold when my pain becomes unbearable. And of everything abled-bodied people get to daydream about that perfect match. 

To my fellow disabled reader, I want you to feel the desire you embody. I want you to know you are not lesser than if you haven’t had the sexual or romantic experiences of your abled friends. I see you. I see both of us beautifully trying to find each other in a world that has eliminated public space for us, driving us online and further and further isolated. We are not daunted–hurt yes, but not daunted because we deserve love, desire, and pleasure accessible to us. Even if we have to give it to ourselves.