Skin Hunger and the Taboo of Wanting to be Touched

This is An Unquiet Mind, a monthly column by s.e. smith that explores disability identity and its interaction with the world at large.

The physical therapist has a warm, friendly voice, and a manicure that glitters as she lowers the table to make it easier for me to transfer myself, paper crinkling beneath me. I am in a strange parody of a massage treatment room; instead of generic orientalist art on the walls and Native American Flute Serenade Disc Four, there’s a cutaway diagram of a slightly alarmed-looking person with a void where their genitals might be hanging crookedly by the door and the whir of a white noise machine in the hall.

She asks if I am ready to begin and rests her hand lightly on my shoulder; a thoughtless gesture, one she will make with dozens of patients that week as she probes and adjusts their bodies in search of the things that are wrong inside them. But I feel her hand like a brand, every nerve tingling as she trails it across my back, feeling out the topography of vertebrae and muscles, a cascade of fire that spills across me before she’s even begun. I shiver.

“Is this okay?” she says, in a soft voice, and “yes,” I say, but then I wonder if I can recall the last time someone who wasn’t a medical provider touched me. Did I hug a friend when I ran into him at the movie theatre, or just imagine it? I search my tingling nerves for the memory and yes, there it is, the baby, the last human being I touched was the baby, who catapulted himself across the living room to chew on my knee.

But when did I last see the baby, I wonder, as she works some kind of dark witchcraft on my back, twisting it in a direction I didn’t know it could be twisted, making something shift so I gasp, but it is because for once I am not in pain.

Some call it skin hunger—the intense desire for physical and not necessarily sexual intimacy shared across people and cultures. Even in hug-friendly California, I am often reminded that the United States is a touch-averse culture, that gestures like holding hands or cuddling together on a couch are laden with sexual connotations even when none exist. The body of work on the need for touch is limited, focusing primarily on new parents and infants, but suggests that contact has mental health benefits as well as social ones.

The most famous research on skin hunger is also the most grim, a series of monkey studies conducted by researcher Harry Harlow in the middle of the twentieth century. Harlow’s macaques were subjected to extreme isolation, in some cases entirely deprived of contact and clinging to “mothers” made from wire and cloth. He dispassionately observed that this deprivation resulted in “devastating and debilitating” results among the study subjects.

There is a popular sense that disabled people are un-date/touch/knowable, that we neither want to establish romantic and sexual relationships and we also aren’t capable. To put it mildly, dating in this landscape is subsequently challenging.

A few years ago I went out to a bar with a partner, forcing much shuffling of chairs and sentiments to accommodate his wheelchair. I was excited for my friends to meet him, pleased to introduce a person I’d talked about for weeks.

As soon as he left for the bathroom, one of my (now former) friends brayed: “Does his dick work?”

It wasn’t simply the question that made me push my chair back, get up, and walk away, texting him to meet me outside when he was done. It was the casual sense of ownership over his body, the probing interest in our relationship, the surprise that someone “like him” could even find someone to date, let alone fuck. It wasn’t the first or last time someone made a comment like that around me, desexualizing the entire disability community with their hand perched smugly on a drink, eyebrows raised in surprise when I didn’t humor them as they speculated about how little people have sex, whether a facial difference ruins the mood, if Deaf people vocalize in bed.

There is a popular sense that disabled people are un-date/touch/knowable, that we neither want to establish romantic and sexual relationships and we also aren’t capable.

This isn’t just the case with physical impairments, but also with mental health conditions; we may not necessarily be framed as physically incapable, but we are deemed dangerous, frightening. “Bitches are crazy, am I right?” people say when women don’t do what they want them to. The crazy ex-girlfriend is such a compelling trope that she has an entire television show and an evocative mental image in the form of the bunny boiling scene in Fatal Attraction. Crazy people are inherently unstable, too unsafe to date, but we’re also liars, cheats, held prisoner by our medication.

For a while, I experimented with OKCupid, like most of my generation; time after time, I’d leaf through a profile, get excited that someone shared my interests, wrote an articulate and engaging description of themselves, but when I filtered our match questions, nearly inevitably, the ones about mental health would surface first. They’d never date someone with a mental health condition, or someone who takes medication to manage mental health.

Sometimes they’d see that I’d looked at their profile, message me. “You seem pretty cool,” they’d say, with the confidence of privileged people who don’t have to sift through match questions to determine whether prospective partners engage in discriminatory comments about them. I’d never reply. What’s the point? To be told “I don’t mean you”? To perform pleasure at being told I’m not like the other crazies?

Eventually, I left OKCupid, but the minefield surrounding disclosure is still a constant in my life. “Disclosure” itself suggests I have something to be ashamed of, and as someone who is openly crazy, it’s hard to imagine a situation in which I start dating someone and they don’t know. But there is a difference between knowing and knowing. Being upfront from the start helps weed out hateful people, but comes with risks, too. The risks that someone will dehumanize me, will view me as an easy target for violence.

Talking about wanting touch, feeling starved for it, is taboo. And we also live in an era when men routinely exert ownership over women’s bodies, insist that they “deserve” relationships, where lack of intimacy is used to justify physical and sexual violence. Thus, there is a certain tension between these things; we acknowledge that disability is stigmatized, that disabled people who want intimacy deserve intimacy, but they are not entitled to intimacy.

These conversations become fraught; how can I say that I fear I’ll never date again without feeding the monster? No one owes me their touch; I am starving for it just the same.

Sometimes people seem to hear “you are required to date disabled people even though it makes you uncomfortable” or “you are required to stay with an abusive disabled person (whether or not their abusiveness stems from their disability)” when we talk about these things, which hurts; it’s both not what we are saying, and a perpetuation of harm. No one should feel pressured to date someone who is not right for them, to stay in a relationship that is unsafe or unfulfilling; no one should put another human being in either position. Yet, the belief that disability on its own makes someone an unfit partner is deeply disturbing, carrying with it a sense of cold indifference.

How can I say that I fear I’ll never date again without feeding the monster? No one owes me their touch; I am starving for it just the same.

Within the disability community, some people feel it’s defeatist to have these conversations, that speaking a thing makes it true. This push to remain silent places icy fingers at my lips when I would speak, buries the skin hunger that burns from the inside, crackling with every move, overlooks the discrimination that fuels it. It becomes an amplified isolation, to be rejected for our disabilities and rejected again by the disability community for saying so.

I think of this when I meet a friend for tea and we go to the beach afterward. We’ve left our shoes above the waterline, letting the sand scrunch between our toes as the sun sets, bleeding away at the edge of the horizon and turning the water gunmetal grey tipped in gold. It is the first time we have seen each other since her wedding and there is a moment of awkwardness that eventually dispels as we settle into old rhythms, old ways of knowing, finishing each other’s sentences and predicting each other’s questions. I am reminded that intimacy goes beyond touch, that it is something innate in the way we relate to each other. I try not to let my jealousy show, thinking that she will go home to a loving wife and I will return to stony silence, broken only by the wind whispering in the trees. Failure, failure, failure.

She pats me on the shoulder, tells me it can’t be as bad as I’m claiming, someone will appreciate me for who I am. Someday. She tells me I’m beautiful, smart, funny, worthy of love, but alone in the darkness of my house, in the empty expanse of my bed, her comments will feel like stings, reminders of personal failure; for surely if I was all of those things, I wouldn’t see someone’s face politely close when they learn about the whole of me, wouldn’t be immediately classified as undateable, unfuckable, unwantable, when I’m introduced to new people, wouldn’t see someone’s eyes stray to my cane for a transparent mental calculus—I will not be sporty enough for them, cannot keep up, will never be enough. I will go to sleep with the ghost of her hand on my shoulder, skin hunger gnawing just below the surface.

“I’m sure you’ll find someone,” she says, and I think, will I?

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