Beneath The Sheets

Beneath The Sheets

Conversations About Sex And Disability

Published on February 10, 2016

A woman decides she wants to have sex before going to college. She believes sex will make her more independent, deepen her relationships, and help her discover herself. But her cerebral palsy complicates her relationship with sex.

Rania Abi Rafeh, a senior at Barnard College studying English and creative writing, explores this narrative in her thesis and novel-in-progress. “She starts to realize that sex and disability don’t match. They’re both two taboo tensions that fight against each other,” Rafeh explains. “The conflicts that arise between those two tensions start to unravel throughout the narrative and show her who she really is and what she really wants, and that really helps her. That hinders her and that helps her.”

This kind of complex story is typical when it comes to sex and disability–two topics that are difficult enough to tackle on their own, and which become even more obscure when they’re combined. Of course, the first step to unraveling the relationship between the two is simply to begin talking about them at the same time.

Abi Rafeh spends a lot of her time thinking about sex and disability; it’s her academic focus as well as a part of her daily life. The fact that she has decided to write a novel–her thesis–on the topic demonstrates its significance to her.

A fictionalized narrative is just one way to discuss this topic, and it can only cover one facet of an issue that comprises near-infinite permutations of disability and sexual expression. It’s a conversation that requires diverse forums and narrators. But the first step to understanding sex and disability is to discard certain incorrect assumptions about their relationship.

Stereotyping sexuality

Often, the “disabled community” is characterized as a whole, even though it includes a wide range of experiences. Different disabilities have completely different effects on people’s lives, including their sex lives.

Joya Ahmad, a junior at the School of General Studies studying neuroscience, is one of the directors of Columbia V-Day’s production, Respect(ability). Columbia V-Day is an organization that produces activist theater with a focus on sexuality.

According to Ahmad, in many people’s minds, disability becomes an identity that subsumes all others, or at the very least defines them. “There’s this idea that if you’re a disabled person, if you have a mental illness, that’s all that you have,” she explains. “So the conception that a person on the autism spectrum could have a relationship, or that a person with a physical disability could have sex, or that a person with a mental illness could have relationships and sex, or relationships without sex, or sex without relationships—all of those combinations are just shoved off the table.”

Dylan Kapit, a senior at Barnard College majoring in psychology and education, agrees, “People assume that when you’re disabled, that’s your only identity and you’re incapable of having other ones, that people with disabilities don’t have sexualities, or don’t have the desire to have sex, or can’t have queer identities,” they say.

Disability is implicitly defined as single-faceted, an identity that negates or precludes the reality that identity is an amalgamation of factors. People don’t talk about sex and disability because they assume the two can’t coexist.

Added to this rejection of the existence of a disabled sexuality is the issue of taboos. Sex is already a tricky topic to discuss, no matter the lens through which one views it. It’s even tougher to talk about the ways in which sex relates to gender, class, race, and sexual orientation. But those conversations are still far more common than those about sex and disability.

Abi Rafeh is one of the few people having these conversations; she has written specifically about her experience with cerebral palsy. She attributes the silence surrounding sex and disability to its combination of two strong taboos. “It’s not sexy to be in pain or to be medically involved with a disability. The disabled body really articulates the tension between the medical world and the sexual world,” she explains.

Divulging the intimate details of one’s body is unusual, and people are even less likely to go into the particularities of its challenges. Talking about two personal aspects of one’s body—its sexual function and its medical condition—almost never happens at the same time. Viewing a person’s body as primarily medical disconnects it entirely from sex.

People with disabilities often find themselves relegated to one extreme end of a spectrum–either asexualized or fetishized. Rowan Keeney, a sophomore at Barnard double majoring in women’s, gender, and sexuality studies and activist theater, is an associate producer of Respect(ability). Keeney says that people with physical disabilities are often met with one of two reactions: “Either ‘I’m repulsed,’ or ‘I find it hot.’”

Fetishization occurs when people characterize a disability as sexually attractive. Morgan Russell is a senior at Columbia College majoring in English and co-directing this year’s Respect(ability). She has amniotic band syndrome, which occurs when bands form in the womb and wrap around a developing baby, cutting off circulation and resulting, in Russell’s case, in a club foot and the loss of fingers. She remembers having her disability fetishized soon after she arrived at college.

NSOP [New Student Orientation Program] week I met this guy, this cis boy, and I had a big crush on him. One night I invited him over to my room because my roommate wasn’t around. It was pretty late at night, so it was definitely a booty call,” she recalls. “He came over, and we were talking … and eventually the conversation worked its way around to my hands and feet and ankles. And he said, ‘I must have a thing for girls with birth defects.’”

Though fetishization doesn’t deny the existence of disabled people’s sexuality, it can be just as harmful as the belief that disabled people are asexual or incapable of sex.

“In that moment I just froze. I didn’t know what to do or say, but I knew it made me really uncomfortable,” Russell remembers. “That sat with me for a really long time. The things that I spent a lot of time thinking about were: Why didn’t I say anything? What should I have said? It was one of those situations where I was rehearsing a monologue in my head for months after that, trying to figure out what I should have said or what I could have said, never really settling on anything.”

Fetishization takes an emotional toll; it’s a barrier to creating meaningful relationships in which partners see themselves as equals. “People seem to think that in fetishizing [disability], they’re breaking out of this mold of desexualizing it and are therefore doing a good thing,” Keeney believes.

But fetishization and objectification can both can lead to unhealthy relationships.

Asexualization and fetishization aren’t mutually exclusive. One student at Barnard, who has asked to remain anonymous because she does not want to discuss details about her sexual life with her family, has had cerebral palsy her whole life. Although it hasn’t physically affected her ability to have sex, she became aware that her disability would limit her sexually as soon as she hit puberty.

“I realized boys wouldn’t look at me like they looked at other girls. They saw me as an asexual being, unable to have sex,” she writes via email. This realization was entirely at odds with her conception of her own sexuality, though. “In my mind, I was just like everyone else. I wanted to have sex, to have that experience,” she explains.

Despite this early understanding that her peers didn’t consider her a sexual being, she has been able to have sex. However, her disability has made her vulnerable to abuse. “When I began to be sexually active, I noticed that some guys saw me as vulnerable, easy to take advantage of,” she recalls. “My first few times, the guys completely took control of my body, I felt completely paralyzed. A girl who’s wasted and disabled? Too much of an easy target.”

This experience of abuse as a result of disability is not unprecedented. According to a study conducted by the Bureau of Justice Statistics in 2012, individuals with disabilities are three times more likely to experience sexual violence than individuals without a disability. Physical disability not only means asexualization or fetishization by others, it also means a person is physically vulnerable to being overpowered and assaulted.

She found that she is able to regain a sense of control over her body and her sex life through masturbation. “It gives me so much confidence over my body, and I love that I have the control,” the Barnard student writes. “And it has improved my sex life with partners because I know what makes me feel the best, I know that some spots are more sensitive than the others. And it just lets me to get back a piece of me that was taken away from me.”

Masturbation is a means of asserting autonomous control over her own body, of reframing sex after abuse as a personal choice.

Expanded intimacy

Even when sex is consensual and with a trusted partner, though, disability can still add a layer of difficulty. For Abi Rafeh, the pure mechanics of sex demand intense communication not just with her partner but also with her family and doctors.

Abi Rafeh has cerebral palsy as well as vulvar vestibulitis, which is characterized by chronic pain and extreme nerve sensitivity in her vulva. This means that vaginal sex is extremely painful. “Imagine having a knife stuck up your vagina,” she explains. Her pelvis is also inverted, adding a layer of difficulty to sex.

Her disability manifests as a lack of agency in her sex life. “With sex and disability, the body’s no longer my own. It’s no longer shared between me and my partner. It’s intruded upon by physical pain and the medical world,” Abi Rafeh admits. “I start to lose faith and be angry at my body because it’s being intruded upon, and it’s not being able to have that moment of intimacy and sexual pleasure just with my partner or just by myself. How can I trust my body if it keeps on deceiving me?”

So many factors outside Abi Rafeh’s control play a role in sex that the act–usually intimate and personal–feels removed from her authority.

Abi Rafeh didn’t discover that it would be difficult for her to have sex until recently, when she started dating her current boyfriend, Justin Goodman.

“The idea of having sex and it being so horrendously difficult was such a shock for me, because I was masturbating before I had sex. And it would always be so pleasurable, because I’m really, really sensitive. But then when I applied that to the actual experience, it wasn’t pleasurable,” she says.

Despite the silence around sex and disability, an incredible amount of conversation is required for Abi Rafeh to have sex. Communication with her boyfriend is especially important. “You do become more acutely aware because there’s a lot more discussion happening—no, not there, please there, continue there. Which should be happening in all sex, but since we generally tend to not think about things unless we’re forced to stop at some point, we don’t,” Goodman explains.

But talking to her boyfriend is just the first layer: She also needs to talk to her parents about it.

She recalls a recent discussion with her parents, telling them that sex was still painful. These conversations aren’t entirely easy to have, she explains. “Talking to my Lebanese conservative father who is 67 years old about my sex life is hilarious and nerve-wracking at the same time. He has this look of, ‘I don’t want to be here, but I have to, because I’m your father and I have to support you.’”

But because her sex life includes medical elements, she has no choice but to talk to her family about a topic that would otherwise be intimate, personal, and solely between her and her boyfriend.

She must also discuss this intensely personal topic with doctors. Abi Rafeh has a manual full of information on tools and toys that can help disabled people have sex. The introduction reads, “The information presented here is not prescriptive, and the specific products not recommended per se, but are meant to provide examples and illustrations of some of the potential options that can be introduced into the sexual practices of the individual or be used as an adjunct in the discussions of sexuality and disability by the health care clinician,” driving home the sheer number of conversations a disabled person must often have in order to have sex, as well as the clinical nature of those conversations.

 

Even with all this forced communication with people other than her boyfriend about her sex life, Abi Rafeh also chooses to publicize her experiences with sex and disability through her writing. In these endeavors, she chooses to speak openly about her sex life—an effort that, paired with all the forced conversation with doctors and family members surrounding her experience with sex, feels significant.

Through her work, Abi Rafeh hopes that “disabled studies can be considered a legit kind of academic department. I want to have more classes on disability studies, I want more awareness on disability studies and the disabled body.” She sees her openness about her sex life as a means of paving the way for future conversations and study.

Although Abi Rafeh chooses to study and discuss her disability, she’s also forced into openness by the physical realities of cerebral palsy—in her case, a visible limp. But many people are able to hide those disabilities. For them, discussing disabilities is a conscious choice rather than a requirement, and sometimes they avoid revealing their disability.

Because of the perceived incompatibility of disability with other identities, many people with non-physically apparent disabilities choose to hide them. “I can pass for able-bodied, and I can pass for someone without a mental illness, and I can pass for having none of those identities,” Ahmad says. “So choosing actively not to pass in this show [Respect(ability)] was a process, and also required acknowledging the incredible amount of privilege that I have with being able to pass.”

Discussing one’s disability, then, may first require feeling comfortable enough to even admit one has a disability at all—no easy feat in a world that disallows and devalues people with disabilities.

But sex specifically requires an openness about disability that means passing no longer becomes an option. “I’ve found that having to out myself as a disabled person has been much easier in a space with a disabled partner,” Kapit says. “I can be like, ‘Ooh, you have some stuff going on too,’ and we might have different stuff, but we both understand to accommodate each other’s needs, because we both are used to other people not accommodating them.”

“Whereas it’s very different having an able-bodied partner and having that person be like, ‘Are you OK?’, and I’m like, ‘No, I’m not OK, but I’m OK being not OK.’ A disabled partner might be like, ‘I understand,’ where an able-bodied partner might be like, ‘I’m really worried,’” Kapit continues.

It’s difficult, even if a partner without a disability is aware of their partner’s disability and compassionate about it, for that person to fully understand how to act. A person without disabilities can never fully understand what they entail, and therefore doesn’t always know how to best support a disabled partner.

Goodman speaks to the delicate position he has as the partner of a woman with disabilities. Physically, he takes special care to ensure that she’s comfortable, to communicate with her all the time. But that’s not the only responsibility he feels.

He believes there is a difference between consciousness and awareness in terms of disability. “When you’re aware of something, it’s like a cat is aware that dog’s nearby. Then there’s being conscious of something, where you see someone’s passing by with a limp, and you think about the fact that you’re thinking about that,” he explains, stressing the importance of self-reflection in understanding disability.

The point of these conversations, he says, is not simply to recognize that disability exists, or that sex and disability coexist. It’s also necessary to ask why these conversations are so rare, to analyze and question this reticence.

Organized conversations

Because conversations about sex and disability are so rare, the few forums in which to discuss them are especially striking. Columbia V-Day organizes an annual production of Eve Ensler’s The Vagina Monologues—or, in recent years, a reimagining of that show. The title of this year’s show, Respect(ability), communicates the show’s mission—to display narratives of disability with respect and care—while taking a sarcastic jab at respectability politics, politics that the show wants to avoid.

Respect(ability) is a collection of skits curated from submissions. The authors of these scenes were involved not just in writing but also in casting the actors in their pieces; the cast is almost entirely disabled. There’s an accompanying zine that contains every submission V-Day received, unedited and unabridged.

The zine will remain as a physical record of the show, Ahmad explains. “For the authors of those pieces, they’re going to be able to take that home and be like, ‘I was here.’ Then when they walk around campus, remembering, ‘these people are here.’ And for the people who felt invisible on campus, to be able to say, ‘no, I’m here, I get to be here,’” she says.

Ahmad believes that the specific style of the show—submission-based with extensive involvement on the part of the authors—is an essential means of shifting the discourse on disability. “It is common that people with marginalized identities have their stories written for them by people without those identities. We see white authors writing black characters, and men writing women, and straight people writing and playing gay people and getting awards for it. But the people who actually have those identities rarely get a chance to tell those stories,” she says.

The structure of the show attempts to provide an authorial agency, a sort of representation and recognition of the agency people with disabilities are so often denied.

The production does not only deal with the oppression of people with disabilities, though. Ahmad underlines the show’s intersectionality, saying that it will touch on race, class, gender, and immigration status as well as disability.

“People try to split and say, this is a racial narrative, this is a disability narrative. For someone like me, if you’re a brown, queer woman with disabilities, you can’t separate those things, and so I didn’t, and that’s what we’re doing here,” she says.

Intersectionality, an activist buzzword at the forefront of much social justice work, has more than a political goal here—it has a narrative one. The emphasis of disability as one part of a larger and more complex conversation is one of the many ways that Respect(ability) attempts to subvert past narratives of disability that assume disability is an all-consuming identity.

Russell describes how she felt after seeing last year’s V-Day show, Beyond Cis-terhood, which focused on queer and trans identities. “I saw a lot of things onstage that I’d never seen onstage before, and that really resonated with me, and it was profoundly moving for me to see those things being performed.”

The power of seeing oneself reflected in characters onstage was one of the reasons Russell wanted to do a show on disability.

Although Respect(ability) intends to showcase disability narratives, the cast and production team wants to affect the audience members without disabilities, too. “Education is so important as an advocate and as an ally of any community, and so much education comes from first-person narratives,” Keeney explains.

Keeney thinks it’s important for people without disabilities to do their homework and seek out information about the disabled community. “Being in a marginalized group is frustrating when people are always like, ‘Tell me all about this. It’s your job to inform me of all of these things.’ It’s really not, though. It’s not my job to tell you,” they say.

Respect(ability) allows people without disabilities to learn without demanding people with disabilities to teach them. The show enables people to tell disability narratives in a style they choose, with a cast they choose, at a time they choose.

Theater isn’t the only place to discuss sex and disability. AllSex, an organization at Columbia that creates discussion groups for students to talk about sex and sexuality, covers, among other topics, disability.

Kapit, whose role as a coordinator means the issue is at the forefront of their mind, finds this section of the curriculum especially important. Kapit is on the autism spectrum, a disability that manifests itself in both physical and mental ways, from anxiety in social settings to extreme sensitivity to sounds and smells.

Kapit says that access, or a person’s ability to participate in conversation, is an important topic in AllSex. At the beginning of each meeting, facilitators check in to see how group members have accessed the space. “Whether it’s that we were in a building that had stairs—do you have cerebral palsy and it was hard for you to get up the stairs? Or was the elevator broken and so you couldn’t come at all?” Kapit explains.

A prerequisite for conversations about sex and disability is to make those conversations accessible to everyone—whether that’s physically placing the conversation in a space that someone in a wheelchair could get to, or, more abstractly, making the conversation feel emotionally accessible to all participants.

However, there are aspects of the conversation on sex and disability that AllSex has yet to broach, Kapit admits. “We do talk about how this campus is barring to people with trans identities and people who are of lower socioeconomic statuses, and how this is a very specific school and what that means. … I’d like to talk more about how this campus just doesn’t accommodate people with disabilities well.”

Kapit explains that one of the major barriers to discussing disability at Columbia is simply a belief that a disabled person can’t be a student here. “I think that we go to a school where people are like, you can’t have a disability if you go to an Ivy, because you have to be smart enough to get in. People equate disability with not smart, which is not correct at all.”

“But that is something that people have told me a million times. ‘You can’t be on the spectrum and be a Columbia student,’” Kapit says. It’s difficult to even begin to talk about sex and disability if even the validity of one’s identity—as both a disabled person and a Columbia student, say—goes unrecognized.

The discussion of sex and disability is tangled and far-reaching, especially since both categories are impossible to define in just one way. But just because the discussion is complex doesn’t mean it’s impossible to have.

Sex is personal–and so is disability. And as large as the ideological discussion looms, the choice to talk about sex and disability is, at its base, completely individual. The people having these conversations are taking a risk because they know their stories are urgent, relevant, and necessary.

“Silence is heavy. If my privilege allowing me to speak some of these realities and some of these truths lifts the burden for someone else even a little bit, it will have been worth it,” Ahmad says.

“It’s been a huge risk to put my name on it as a personal thing. But if not me, then who? And if not now, then when? That’s what you do at a place like [Columbia], when you have this kind of opportunity.”

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