Skin Hunger: Navigating Disabled Sexuality in Quarantine

By Jaxson Benjamin

Author’s Note: This article space centers disabled sexuality because, for the most part, we are left out of the conversation. The narratives around disability and sexuality frequently regard us as partial, lacking in sexuality, or not whole people. Rewriting sexual scripts around disability means centering the lived experiences of people with disabilities. 

Does that mean that you if you don’t identify as disabled that you aren’t welcome here? 

You are very welcome, whether you live with a condition or not. Equally, it’s okay if you live with a condition and don’t identify as a disabled person. It’s also okay if you are non-disabled and want to learn about sexuality for your own growth or to strengthen your allyship practices. 

I’m not a fan of labels, but I am a fan of community, representation, and camaraderie, which shared classifications can aid in connecting. I was diagnosed with Fibromyalgia, Pelvic Floor Disorder (PFD), and General Anxiety Disorder (GAD) over 10 years ago, but I only started publicly identifying as disabled in the last few years. Our journeys are ours and this writing is aimed at exploring pathways.

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“It is in our nature as sensual beings to need affection through touch.” –Rebecca Dewar

This quote from sex educator Rebecca Dewar refers to the seriousness that physical touch has on us. “Skin hunger” is a term used in sexology to refer to the importance of physical touch for human beings—that feeling when you’re craving a hug or a soft caress (perhaps a hard touch for some of us). After close to a year of living with COVID-19 concerns, almost all of us are missing physical human connection. Even a casual high-five releases endorphins, promoting happiness and bonding. A lack of physical touch can affect our development as children and our mental wellness at any point in life. 

As queer people, our sexuality and need for physical connection are huge parts of our identities—our sexual orientation, our gender identity and expression, how we engage with physical or intimate touch. Many of us spend a great deal of time in our lives pondering on how we view ourselves as sexual beings and how we act on our sexual feelings. We know how important it is to do this self-work and that it is our right to be ourselves. Similarly, fighting for the human rights of sexual health and wellness is not new for the disabled community or to those who identify as both queer and disabled.

Physical intimacy is a part of our “love needs,” as theorized by A. H. Maslow in his hierarchy of needs. Maslow rationalized that human beings have five basic needs that motivate us, that shape who we are. 

Physiological needs – things like food, water, resources

Safety needs – physical security 

Love needs – our relationships, from romantic and intimate to friendships and family

Esteem needs – self respect and our status in society

Self-actualization – accomplishments, achieving goals 

While Maslow’s work emphasized a hierarchy that applies to everyone, scholar Terry Cross of the Seneca Nation presents a model of human needs that recognizes each person’s uniquely personal experiences and cultural values. The Breath of Life Theory looks at the social and personal structures that define us, making room for what is important to us as community members and individuals. The needs of the queer and disabled communities are different than others, and, as individuals, we all have our own needs and desires. When a person’s human needs are threatened, their wellbeing can suffer. 

For the disabled community, meeting the basic human needs of physical touch and sexual freedom is rooted in vulnerability. Some who are physically disabled can require assistance to engage in physical actions, which besides being inaccessible at times, can also be difficult to navigate if sex education and support aren’t in practice. Chronic pain can make physical touch unbearable. 

Common sexual scripts and narratives depict people with disabilities as unsexual (infantilizing) or overly sexual (the villain). Besides impacting how society and our intimate partners see us, these stereotypes highly affect how we view ourselves. Defying those categories and instead forging our own definitions of sexuality—different than those non-B.I.P.O.C., non-fat, non-queer, non-disabled narratives that we receive—are rebellious acts.

Quarantining makes meeting our sexual needs especially difficult, even more so for the disabled community. For many of us, this isn’t our first time in quarantine-like isolation. When I was first diagnosed with chronic pain conditions, I had been suffering from symptoms for years without treatment. By the time I got the official diagnosis, which made it possible for me to legally stay home from school, I was bedridden. I spent years 17 to19 horizontal and 90 percent alone. 

Drew Gurza, sex educator, badass, and author of the recently published The Handi Book of Love, Lust & Disability, discusses the difficulty of fighting for intimate touch as a disabled person. “I have gone now almost 9 months without intimate touch as a result of COVID-19,” he says in a social media post. “I have fought so hard as a disabled person to get intimate touch, and to not be able to have it at all has been really, really hard.” Gurza’s words deeply resonate—I haven’t had a hug since the pandemic hit the States and, even then, can’t remember who I shared it with. I am so grateful for the work of disability activists like Gurza, Keri Gray, Imani Barbarin, Eva Sweeney, Trista Marie, and Andrea Lausell who shine light on ableism in society and share tools on relearning community and self-love. Representation of disabled identities and the discussion of disabled sexuality spreads validation and lessons in pleasure. 

During my late teenage years when I couldn’t get out of bed, Netflix had just started online streaming services. Instead of learning about intimacy, relationships, and pleasure from traditional teenage explorations, my sexual scripts were heavily influenced by movies and TV shows. 

While these narratives can be helpful to my work now as a sexologist, analyzing social norms and scripts, they seriously messed up my comfort with trust and intimacy. Access to physical and emotional therapy would later encourage my enjoyment of and safety to explore sexuality and what defining pleasure means. (The main thing I wished I knew then was to be soft with myself!) 

Now, nearly 10 years later, I’m trapped in the house once again. This time, I can move about more freely and am finding new ways to prioritize sexual joy. Can I get some queer snaps for having access to my closet 24/7 to change my gender presentation four to five times a day? 

The way we view ourselves and develop our sexual identities is shaped by what’s around us: family values, religious influences, peer’s actions, media portrayals. Different life stages are prescribed as we age and they each come with a set of sexual norms for that phase of life. As queer and disabled folks, our life stages are inherently different than the status quo. It is up to us to carve out our own spaces and goals. We need creativity and community to write our stories, especially now. 

Helpful things to remember when unlearning sexual social norms:

• Orgasms don’t define sex or a great sexual experience.
• Penetration doesn’t define sex. 
• Sexuality ebbs and flows, there is no right or wrong time to feel the tingles. 
• Being present, knowing what you want, and communication skills are the bedrock of great sexual encounters (including when you’re with yourself).
• Gentleness with yourself, holding your hand, giving yourself a massage, complimenting yourself, can prompt the same responses in the body as if another person was touching you. 
• Everyone deserves safe and enjoyable sexual experiences. Your needs and desires are valid.
• There’s a big difference between action and fantasy. You might fantasize about something you would never do in reality, perhaps it’s taboo or very far outside your comfort zone, and that’s totally fine. Our internalized judgements keep us in line with social norms. Unlearning the norm is life’s work, but will serve you to be kinder to yourself and others. Your imagination, like your sexuality, is yours and will get stronger the more you play with it. 

This time isn’t easy for any of us. For those of us who are disabled or live with conditions, it can be particularly difficult to find joy or pleasure right now, especially if we hold multiple identities like queerhood or are B.I.P.O.C. If you are non-disabled and have the space, please consider supporting the disabled community. This can look like reaching out to friends who are disabled to check-in or getting creative together about brainstorming ideas to explore sexuality; platforming disabled narratives to boost representation and grow community; acting as an ally when ableist dialogues are occurring; or supporting disabled causes with time or finances. One of the biggest differences I’ve noticed about this time of being stuck in the house is the room I have for openness. I talk about disabled sexuality with friends, I read about it from others, I traverse it with myself. Curiosity, playfulness, and pleasure are radical and they fuel me, and I hope they can do the same for you!

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Jaxson Benjamin is a queer, disabled, social justice educator and sexologist raised on the land of the Lenni Lenape People in re-named Philadelphia. Jax’s work is rooted in the empathic and story-telling approaches of Community Development that aim to disrupt Eurocentric teachings. Check out their work at www.jaxsonbenjamin.com.

Headshot Description: Jax, tan olive skin tone, short dark curly hair from the chest up looking at the camera. Wearing brown utility suit and black top underneath, with long white earrings, dark purple-ish lipstick, and gold septum hoop. Blurred tall green and tan plants and a river can be made out in the background.