The Complicated Dynamics of Disability and Desire

Photo by LaVladina (Creative Commons). 

Freshman year of high school, I was sitting in biology class when the boy next to me abruptly said: “I didn’t know you had a disability.” I was startled.

“What? How do you know?” I asked. He replied, “Oh, I heard the teacher giving you special instructions for the test.”

I slumped in my chair further. The boy then told me dismissively, “You don’t look like you have a disability.”

At the time, I wasn’t able to articulate to him that not all disabilities are visible. Immediately, I felt lesser. I felt undesirable. Unwanted.

I was diagnosed with two learning disabilities in third grade: dyscalculia (often described as the math version of dyslexia) and language processing. My elementary school didn’t practice inclusion, so I would leave with the other Special Ed kids in the middle of various classes to go to our Special Ed class. It killed the small amount of self-esteem I had at the time.

I was always embarrassed when I had to leave my “regular” class, but even more so after hitting puberty. People with disabilities are often thought of as completely non-sexual beings. I remember thinking, in 5th grade, “No boy will ever think of me in that way, because I’m disabled.”

Throughout my life, I was told I was “undesirable” due to my invisible disabilities. I had teachers who called me “stupid” and said I would “always be different from the other kids.” I was considered their “problem child” because they had to work extra hard to figure out how to teach me. I was an undesirable student to many teachers.

The author in elementary school.

People with invisible illnesses and disabilities often have difficulty in school and in the workplace. In a National Public Radio feature about invisible disabilities, reporter Naomi Gingold says, “When a disability isn't immediately obvious, others—at work, school or even at home—sometimes doubt it exists and accuse those who suffer from invisible conditions of simply angling for special treatment.”

People with visible disabilities deal with this on a significant level. In her essay “Nobody Catcalls The Woman In The Wheelchair,” writer and wheelchair-user Kayla Whaley notes, “People register ‘disabled’ before they register ‘woman’ and the former always overrides the latter, because in our ableist society a disabled body is necessarily a desexualized one… No matter what, though, we are not desirable.”

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This is why disability activists were understandably upset about Kylie Jenner's photoshoot for Interview magazine in December 2015. Jenner appeared on the cover of the magazine sitting in a brass-colored wheelchair—sexy, glamorous, and blank. It’s fetishization to the nth degree for Jenner, an able-bodied person, to pose in a wheelchair wearing a black latex bodysuit. It’s “crip drag,” as comedian and disability rights activist Caitlin Wood calls it. Do magazines ever showcase actual physically disabled people being sexy on their covers? No.

Kylie Jenner posing in a golden wheelchair on the cover of Interview magazine.

The interaction of visible disabilities and sexuality has been getting more media attention in recent years. It’s important that we’re finally talking openly about a once-taboo topic.

What doesn’t get discussed as frequently or openly is the intersection of invisible disabilities and sexuality. However, in my personal experience, invisible disabilities also have a profound effect on sexuality and desirability.

According to Invisible Illness Week, approximately 96 percent of people who live with an illness have an illness that is invisible. This includes people with invisible disabilities. Having an invisible disability means having to decide when to disclose, and doing so over and over again. It’s an exhausting process. In her article “My Body, My Closet: Invisible Disability and the Limits of Coming-Out Discourse,” Ellen Jean Samuel discusses how, as individuals with invisible disabilities, we are often engaging in a “self-destroying tension between appearance and identity.” In this way, having an invisible disability as part of one’s identity is always up for debate and there are always demands for its legitimacy.

I must constantly think about the implications of disclosing my learning disabilities. Reporter Alecia Santuzzi of Psychology Today writes, “Without knowing that a disability is involved, teachers, supervisors, and co-workers are left to assume that unexpected poor or inconsistent performance accurately reflects the person’s ability to do the tasks.” If you need accommodations for work or school, you have to disclose formally. However, if you do disclose, you are looked at differently, and often questioned by peers, coworkers, and supervisors.

There have been countless times where the authenticity of my disabilities was questioned. I had one teacher in middle school who told me I was using my disability status as a “crutch.”

As I grew older, I obsessed over the idea that my invisible disability made me non-desirable. At first, I understood it in terms of teacher/student relationships, and then I began to understand it in romantic/sexual terms. Anytime I had a crush on a boy, “disabled = non-desirable” ran through my head, taunting me.

During my first year of college, I finally got out of the headspace that told me my disabilities made me undesirable. How I did this was not the best or healthiest way for me.

I got over it by sleeping with many men. In fact, most of the men I slept with in my 20s were vessels. Their interest in sleeping with me somehow proof that I was desirable.

I rarely told any of these men of my secret shame. I didn’t want to be looked at differently. I didn’t want to be seen as anything other than desirable.

Obviously, I wasn’t over it.

During grad school, majoring in Women’s and Gender Studies, I thought my issues with desirability were finally resolved. I felt like a “bad” feminist to care so much about being thought of as desirable by men, so I gradually unpacked these feelings and was able to stop caring. For the first time, I was having conversations with the men I slept with about having learning disabilities. None of them seemed to care, which at the time made me feel great. Finally, I was sleeping with men because I wanted to, not because I needed proof of anything.

Until the spring of 2014. That’s when a doctor diagnosed me with herpes—a parting gift from an ex-boyfriend. The diagnosis shocked me. I’d never before had a sexually transmitted infection. Now I have one that is incurable. Like my learning disabilities, my STI-positive status is mostly an invisible one; nobody knows I have herpes until I disclose.

With two “undesirable” identities now under my belt, my very existence was subverting mainstream notions of desirability.

Contracting herpes was a turning point for me surrounding my desirability. It took something physical and visual for me to come to terms with the non-physical and invisible disabilities that had affected me for so long.

I went back to my old patterns with sex. After disclosing my STI status to partners, I slept with them, or more accurately, let them sleep with me. Once again I sought proof of my worthiness, my desirability. I always received the same so-called proof. Similar to “outing” myself as having learning disabilities, the men I “outed” my STI status to didn’t seem to care. I was still desirable, but I felt numb.

If getting men to sleep with me was how I measured desirability, then yes, I was desirable. But this isn’t what desirability is.

To be desired is to be wanted, right? It’s a positive thing. However, the men I was dating and the sex I was having didn’t feel positive. It didn’t feel desirable. It felt sluggish, boring, and stale. Most of the time, it didn’t feel like I was even in the room. So I stopped. I stopped having sex that I didn’t truly want. It wasn’t easy, but I knew what I had been doing was self-destructive. I remember asking myself at the time, “How is this fulfilling?” I knew I had to break the pattern, so I did.

Desirability is often based on appearance. When I couldn’t visualize the entirety of my identities, I felt like my desirability sunk. At the intersections of these two “undesirable” identities—STI-positive and learning disabled—is a feeling of isolation and invisibility in a society where visible “proof” is always required to be taken seriously, and to be considered desirable.

These days I still worry about my level of desirability, but in a new way: Do I desire myself? Do I want myself? These questions are more important to me than the old ones. If a man doesn’t find me desirable, whether it’s because of my STI-positive status, my learning disabilities, or something else, that hurts for a few days, but if I don’t find me desirable, I’m hurt for as long as I’m on this planet.

I had to choose to desire myself. Desiring myself means I practice radical self-care daily, consciously, and lovingly. It means I take “selfies for survival,” which is what I did when I created the tag (#selfies4survival) on Instagram. It means I self-advocate aggressively, asking for the accommodations I need, asking for what I want, asking for what I desire.

I can’t live with myself if I don’t desire myself, so I make a conscious choice to desire me, to choose me, daily.

In the words of one of my favorite poets, Nayyirah Waheed: “If someone does not want me it is not the end of the world. But if I do not want me, the world is nothing but endings.”

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