Jun 11, 2016

How People with Disabilities Have Sex

Monica Heisey

How People with Disabilities Have Sex
For people with disabilities, sex and sex education remains an accessibility blind spot. Activists and educators are working to change that.
"It essentially does the thrusting for you," a voiceover explains as a man moves himself from a wheelchair to a canvas structure resembling a hinged camping chair. After he gets in the chair, it's implied, he's going to fuck.
It's not just a chair, of course. It's the Intimate Rider, a piece of sex furniture designed with spinal cord injuries (SCIs) and other forms of mobility-limiting disability in mind. The instructional video is part of SCI Ontario's expanding set of online resources for people with spinal cord injuries to learn about sex and sexuality on their own terms. Called "Adapted Sex Toys," the 42-slide presentation contains informational videos showcasing a range of sexual aids. Listed among more familiar sex accessories like feathers and floggers are a waterproof, stainproof blanket for incontinence and high-powered vibrators for areas of decreased sensation.
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.
I was mortified to be talking about sex. I was more worried about, like, Will anyone even want to have sex with me?
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.
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?"
A still from one of Sellinger's presentations. Image via SCI Ontario.
Sellinger struggled to ask social workers and nurses about sex because she was unsure whom to speak to, and she was initially more focused on the other side effects of her injury. Eventually a social worker on her rehab team popped in a DVD about sex after spinal cord injuries. "I was mortified to be talking about it," Sellinger said. "I just wasn't ready. I was too busy worrying about my legs and my life—I didn't so much care about the mechanics of sex as I did about body image, dating, that kind of thing. I was more worried about, like, Will anyone even want to have sex with me?"
Her first wheelchair was by a brand called Quickie, and Sellinger joked that it was "the last quickie she'd ever have." Ten years later, she works full-time as an educator at the Spinal Cord Injury Ontario, an organization advocating for improved service, advocacy, and quality of life for people with disabilities. Sellinger designs e-learning and online resources for people with spinal cord injuries and is passionate about improving sexual education and sexual health resources for people with disabilities. The key, she said, is to go to the source. "It sounds obvious but if you want to know what questions people with disabilities have about sex, you have to ask them," she said. "The best resources are rooted in the experiences of those who need them."
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.
"A lot of these questions are going to be answered differently depending on the nature of someone's disability," Sellinger said. "We're trying to provide information for people to ask better questions about their specific situation, and to help them understand that this is something that it's okay to talk about."
It sounds obvious but if you want to know what questions people with disabilities have about sex, you have to ask them.
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.
Things are arguably even worse in schools. In a 2010 Canadian Council for Learning study on the state of sex education for youth with physical disabilities, 100 percent of participants felt their education had been inadequate and educators were given insufficient resources to properly deal with the topic.
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.
Even if students did manage to get sex ed, it wasn't for bodies that look like ours.
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."
Rose founded the Rose Centre for Love, Sex, and Disability with his wife in 2011. Recently, he launched Disability Positive Consulting, a business allowing him to speak at companies and schools. The not-for-profit company focuses on "leveraging the lessons of disability for success in life, education and business," and provides consulting about disability positivity and sex education.
Like Sellinger, Rose figured out sex and sexuality largely on his own: "I often resorted to Friday nights on Showcase, or softcore porn on TV. My parents were understanding but I wasn't going to talk to them about how to masturbate," he said. (For the record, he figured it out just fine on his own: "With only two fingers available to me, my masturbation was and is different. It's a lot of stroking and soft touch stuff. Also, I'm blessed with incredibly sensitive nipples and earlobes, so touching them works too.") In his role as an educator, Rose said he tries to make it clear that he's open to discussing anything, including masturbation. "I try to be as easygoing as I can, and to share some of my own experience," he said. "It helps because there's no 'right' way to do it, it's just about figuring out what feels good."
Tim Rose and his wife. Photo via Tim Rose.
People with disabilities face a number of barriers to sexual health information, much of it imposed via social stigma or outdated stereotypes about what it means to be disabled. Rose, Sellinger, and doctors often complain about the persistent cultural infantilization of people with disabilities. "We as a society really need to work on the perception of people with disabilities as children," Sellinger said. "It drives me nuts—people are trying to be nice most of the time, but I get treated so different than everyone else. A lot of 'good for you's and pats on the head."
There's also the belief that people with disabilities simply aren't sexual or sexually attractive because their bodies function in a way outside the norm. Alternatively, people with disabilities can be presented as oversexed, fetishized as insatiably sexual beings with peculiar appetites. Both Sellinger and Rose have experienced the neutralizing of their sexual sides as well as being viewed as an interesting tick on someone's sexual bucket list.
"People see disability as something wrong with your body, which means it's easy to not be proud of your body," Sellinger said. "I refuse to believe, even though my body changed, that there is something fundamentally wrong with it. If you're constantly considering your body or someone else's body as broken, it's hard to see yourself as a sexy person, to feel comfortable being sexual in your body."
If you're constantly considering your body or someone else's body as broken, it's hard to see yourself as a sexy person.
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.
"People with disabilities have sex and experience sexuality in different ways, so the information presented from sex ed in schools isn't always relevant to them," Rose said. "I think now teens are going online and talking to their peers a lot more and that's great, but more can be done to close the gap in schools between the sex ed students with disabilities are getting and the sex ed everyone else is getting."
Keeping disabled people in the dark about sexuality and sexual function has real consequences. Aside from people with disabilities needing and deserving intimacy and a positive relationship to their own sexuality like everyone else, disabled children are at a much higher risk of sexual abuse than their able-bodied peers. Doctors also typically screen disabled people for STIs, cervical and breast cancer, and other reproductive health issues at a much lower rate than able-bodied people. Ultimately, acknowledging that disabled people need different information to help them learn about and experience sexual intimacy is the first step to a more inclusive education system.
"Awareness is the first piece," Rose said. "The second piece is that there needs to be a broader definition of sex for all students, even outside of sex ed, just an acknowledgement that sex doesn't always have to be penis-in-vagina penetrative intercourse. There's more to experiencing someone else's body, or your own body, or intimacy, and you can do that in different ways."
Some people will say, 'Is it really worth it if you have such decreased sensation?' And of course it is.
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."

Post Polio Litaff, Association A.C _APPLAC Mexico

Dr. Salk’s polio vaccine1952-1957

1952-1957: Jonas Salk's polio vaccine

Dr. Salk's polio vaccine
A dogged pursuit against a devastating disease
c. 1950
Rows of iron lungs with polio patients are arrayed at the Ranchos Los Amigos Respiratory Center in Los Angeles.
Before the mid-1950s, polio was one of the most feared diseases in the world. Caused by a virus, it created annual epidemics. The disease hit children the hardest. Once contracted, the virus replicates rapidly and invades the nervous system of the victim. People infected are generally contagious for six weeks, even if they show no symptoms. 
The disease struck indiscriminately. Even U.S. President Franklin D. Roosevelt was affected, losing the use of his legs after a diagnosis at the age of 39. In 1938, he founded the National Foundation for Infantile Paralysis, to fund research into a cure. Roosevelt also founded the March of Dimes, a massive public fundraising effort to aid the afflicted and find a cure or vaccine. 
In 1952, there were almost 58,000 polio cases in the United States, leaving over 3,000 people dead and over 21,000 with varying degrees of paralysis. The most severe phase of the disease paralyzed the diaphragm and muscles of the chest, forcing victims to be placed in an iron lung in order to breathe. This imprisonment could last for up to a week, or even for years.
With major outbreaks occurring in the U.S. and Europe, the race was on to find a vaccine to prevent the virus from infecting more of the population. 
Sept. 10, 1952
Family members look on as girls are treated for polio in iron lungs.
Gypsy Rose Lee pulls out some cash to contribute to the March of Dimes during a fashion show at the New York Waldorf-Astoria.
Dr. Jonas Salk, the son of Jewish immigrants from Poland, was appointed by the University of Pittsburgh School of Medicine to tackle polio in 1947. For the next seven years, he worked 16-hour days, seven days a week.
In 1953, Salk's wife and three sons volunteered to be injected with a test vaccine based on an inactivated or “killed” polio virus. After preliminary tests a mass trial began. The head of the National Foundation for Infantile Paralysis strongly backed Salk, paving the way for the final, nationwide trial to be conducted. It involved vast numbers of health professionals and over 1.8 million schoolchildren.
The vaccine was announced to be "safe and effective" on April 12, 1955, the ten-year anniversary of Roosevelt's death.
The success of the trial was widely reported, leading to spontaneous celebrations across the country. Salk refused a ticker tape parade and did not patent his discovery. He understood the need for the vaccine to be distributed widely to begin the process of eradicating the disease, and made his knowledge available to many countries. If the majority of people were vaccinated, any that slipped through the cracks would be protected by herd immunity. Today polio has almost been eradicated.
March 26, 1953
Dr. Jonas Salk and research assistant E.J. Baily at a laboratory in Pittsburgh.
c. 1955
Dr. Salk holds up jars of his newly-developed polio vaccine at his laboratory in Pittsburgh.
The people, I would say. There is no patent. Could you patent the sun?
February 1954
Dr. Salk administers a trial vaccine to an eight-year-old at Frick Elementary School in Pittsburgh.
April 29, 1954
Dr. Leonard Becker administers a Salk test vaccine to seven-year-old Keith Harms of Lombard, Illinois.
Jan. 31, 1956
Visiting Russian scientists look on as Dr. Salk administers his vaccine to nine-year-old Paul Anolik in Pittsburgh.
April 1957
A girl awaits a polio shot and lollipop reward.
c. 1956
Dr. Salk administers the vaccine to a young girl.
He felt that he couldn't ask other parents to let him give this vaccine to their children if he wasn't willing to first try it on his own.
c. 1955
Dr. Salk and a nurse administer the vaccine to a student at Sunnyside School in Pittsburgh.
December 1958
Elvis Presley visits six-year-old Robert Marquette in Frankfurt, Germany to raise funds for the March of Dimes. 
April 8, 1955
Dr. L. James Lewis, research associate of Dr. Salk, injects an anesthetized monkey with a test polio vaccine.
April 9, 1955
Dr. Salk speaks to press in his laboratory four days before the announcement of the results of the nationwide vaccine test.
April 12, 1955
A girl receives a Salk vaccine on the day of the official announcement that it was safe and effective.
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