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What is pleasure? How is it defined? Who gets to experience pleasure? As an incomplete quadriplegic of nearly 37 years and a chronic pain patient of over 20 years, these are questions I still wrestle with.

Some people think pleasure is sexual. But what is that pleasure when society sees you as incapable of having sex or even being sexy? It’s only recently that we’ve seen disability representation in ads for lingerie brands like Fenty and Aerie. Infantilization of disabled bodies is long-standing, as is lack of access to comprehensive sexual health education and accessible examination tables for OB-GYN. Even our tatas can’t be saved, because too often mammograms are inaccessible to non-ambulatory disabled people.

In the realm of dating, there is story after story of disabled people being dismissed—especially by cisgender heterosexual men—with the question “Are you even capable of having sex?” 

Because I was injured when I was very young, I went through the medicalization of my body at an early age. The only time I was taught to touch my privates was for catheterization or to allow a doctor to examine me. Without comprehensive sexual health education, this medicalization leads to a dissociation from your body. You only see your body as serving for perfunctory things like using the bathroom. 

Recently, I modeled for a nude figure drawing event with Figure on Diversity. I talked about how the medicalization of my body meant that I felt uncomfortable showing my body in a figure drawing class, but that if the artists were a bunch of doctors, I would have no problem getting undressed. Medicalization can lead to the same issues with intimate relationships, so part of the journey I’m on is rediscovering my body in different ways. I even posed in nude-toned lingerie, covered in paint, for the chapbook series In This Moment. I never saw fat, queer, Black, disabled bodies in art when I was younger, so I felt it was critical to push myself out of my comfort zone and be the representation I wish I had seen when I was growing up.

Pleasure, for me, is so much more than sex and intimacy with one other person. I find it unfortunate that society puts this box around human desire and pleasure. One of the principles of disability justice teaches us that we are whole human beings. But how can one explore various avenues of pleasure when cities aren’t accessible? When even going out to eat means contending with inaccessible high chairs and high tables? The simple pleasure of going for a bike ride on a summer day is one I didn’t get to have with my family until my late 20s. Many disabled people who are wheelchair users or have mobility impairments do not get to have ordinary outdoor pleasures like a bike ride, a kayak ride, or even grabbing an ice cream. The infrastructure is just not there. Mia Mingus coined the term “access intimacy,” which involves the social relationships we have if disabled people can show up and enjoy activities just like anyone else. In the time of COVID-19 and social distancing, this is more important than ever—and still being denied. 

Pleasure can be having a shower aided by a skilled caregiver who is paid fairly and deeply understands your needs. But this is a fantasy in a country where home health aides and personal care attendants are not valued for their skills and do not even make a living wage.

Pleasure can be visiting friends or family at a house that’s fully accessible and where you can use the bathroom with ease. But how is this possible when less than 1% of housing in the United States is accessible? Affordable and accessible is not how we routinely do housing.

Pleasure is playing with the children in your life, or even just being a silly adult, at a fully accessible playground. But there are only a handful of accessible playgrounds in the U.S. 

Pleasure is being able to leave your home when you want, as you want. But how is that possible with subpar paratransit services, the high expense of adaptive vehicles, and public transportation that consistently ignores the needs of disabled people?

Pleasure is expressing yourself as the whole human being you are. But regressive policies and laws that target LGBTQ people, lack of inclusion within fashion, and lack of inclusion within society at large stifle that pleasure.

All human beings have the right to experience pleasure, but pleasure can be a privilege. In January, the director of the Centers for Disease Control and Prevention, citing a study about vaccine effectiveness, said the “really encouraging news in the context of omicron” was that 75% of deaths “occurred in people who had at least four comorbidities,” adding that “these are people who were unwell to begin with.” In other words, disabled people. We are now lifting mask mandates and going back to work as if COVID were no longer there. That callousness toward my disabled life makes it even more important for me to seize every opportunity for pleasure I can get.