Being born with or acquiring a disability involves a lot of adapting—requiring one to relearn everyday activities, or learn them differently. For the more than 56 million Americans who have some kind of disability, moving through the world becomes an individualized process, one that involves the constant renegotiation of strategies. Despite strides made in recent decades to enable all people equal access to public spaces, sex and sex education remains an accessibility blind spot.
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Asking questions about sex can be uncomfortable for anyone. But for people with disabilities, it's especially difficult: When it comes to the "sex talk," most parents and educators have no idea how to answer typical questions like "How will my body change during puberty?" or "How do I get a girlfriend?" about atypical bodies. For those who have acquired a disability later in life, doctors and nurses often can't or don't feel comfortable answering questions about emotional intimacy and sexual function, like "Can I ask my support worker for help with condoms?" or "How can I achieve orgasm?" Due to a lack of resources and information, many people with disabilities are left to figure out sex and intimacy on their own, in some cases simply deciding that sexuality can't be a part of their life.
I was mortified to be talking about sex. I was more worried about, like, Will anyone even want to have sex with me?
Christine Sellinger was 19 when a rappelling accident left her paralyzed from the waist down. In the four hours it took the rescue team to move her from the mountain to a hospital, she recalls bidding farewell to activities she presumed she'd no longer be able to do. "I remember thinking I'd never date again, because no one dates people with disabilities," she said.Sellinger has an "incomplete" spinal cord injury, meaning she has some sensation and movement below her abdomen, but not much. Sellinger had back surgery a few days after the accident, followed by three-and-a-half months of intense rehabilitation. While rehabilitation involved relearning all aspects of her life, Sellinger said sex and dating rarely came up. "You're sitting there right after your injury talking about the bladder and bowel stuff, how to look after your skin, getting into and out of a wheelchair, dressing yourself," she said. "Why is sex not on that list? It's an activity of daily living. We all do it. Why are we so skittish about talking about it?"
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The pamphlets, online videos, and in-person information sessions Sellinger and her co-workers have designed are straightforward and simple; to create those resources, they worked methodically and non-judgmentally through the questions people with SCIs had asked them in the past. In some cases, they answered queries they've had themselves. "There's no right way to talk about sex or sexuality," says one pamphlet designed to help attendants talk about sex and sexual health with their clients. "The following tips are just to get you thinking about how to talk about sex in an attendant service relationship. They are not meant to be rules, or to tell you the way you must do it." This individualized approach makes particular sense in the disability community.
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While Sellinger was telling me about a recent panel discussion she'd participated in educating nurses about sexual health and function after spinal cord injuries, her live-in partner returned from a run. "Just telling this journalist about our sex life," she joked. He did stretches on the floor throughout the remainder of our interview, sharing a few giggles with Sellinger when she brought up details like the specifics of positioning ("It can be hard to find a good one, but when you do, it's like, hoo boy, here we go.") and how they started dating ("We were friends, so he'd already asked a lot of 'how does sex work for you' questions and knew what he was getting into").Sellinger said healthcare professionals often aren't adequately equipped to address concerns about sexual health and function. "They're nervous about bringing it up because they don't have the tools to discuss it at length, so it just doesn't come up," Sellinger said, adding that one of her focuses with SCI Canada is trying to empower nurses and other healthcare professionals with the information they need to answer questions about sexuality and spinal cord injuries in an informed way. She said that men with spinal cord injuries inquire about their ability to get an erection almost immediately. Women's questions tend to come later into the rehabilitative process and are more about romance and dating. Sellinger and SCI Ontario provide workshops and seminars, as well as online learning tools like the slideshow, to help answer these questions.
It sounds obvious but if you want to know what questions people with disabilities have about sex, you have to ask them.
Access to education in general has long been a struggle for people with disabilities. The United States only guaranteed disabled children access to a public school education in 1975, with the passing of the Education For All Handicapped Children Act (now called the Individuals With Disabilities Education Act). The law required school districts to provide students with disabilities access to the same information and classes as their peers, while also requiring schools to provide extra equipment, personnel, or learning aids as required by individual students' disabilities.
But a law is not a guarantee. Tim Rose, who was born with spastic quadriplegic cerebral palsy, said his high school largely denied him access to sexual health resources. When sexual health came up in other classes, teachers sometimes asked him to leave the room."Sex ed was always taught in gym, the one class I got to skip every year," he said. "Even if students did manage to get sex ed, it wasn't for bodies that look like ours. Sex ed for me was mostly trial and error, a mix of getting what information I could from friends and from TV."
Even if students did manage to get sex ed, it wasn't for bodies that look like ours.
What complicates sex ed for people with disabilities is the fact that the additional information or aid required varies depending on the specifics of an individual disability. Although schools are clearly making attempts to include students with disabilities in sex ed dialogue, Rose thinks it's hard to make disabled kids feel included when the lessons are geared towards their able-bodied classmates.
If you're constantly considering your body or someone else's body as broken, it's hard to see yourself as a sexy person.
Sellinger and her partner, who met at university, have been together for four years. The two were friends for over a year before dating, which meant they'd already discussed Sellinger's disability and some of the more practical hurdles she'd experienced in relationships. "We'd talked about sex, so he already knew about bladder and bowel issues, that accidents can happen," she said. "It made things a lot more comfortable." The couple enjoys an active sex life. Positioning challenges them since Sellinger doesn't have the use of her legs, but figuring out new positions has been fun."Sometimes we'll get into a new one and it's like, 'Woah! That's a keeper,'" she said. "Having bladder and bowel accidents during sex is still mortifying. Sex is messy anyway, but that never stops being embarrassing, even if you're used to it."Sellinger said having to figure out post-injury sex on her own wasn't easy, but it was worth it. "Some people will say, 'Is it really worth it if you have such decreased sensation?' And of course it is, because it's good for your partner, and it can be good for you too," she said. "It still fosters intimacy. It's kind of like the first time you had sex: you had to figure out how to do it, what felt good. You're basically learning how to do it all over again, but it can be an adventure, not an ordeal."
Some people will say, 'Is it really worth it if you have such decreased sensation?' And of course it is.