Sex, technology and disability – it’s complicated

Share
Media portrayals of sexuality often focus on a visual and verbal vocabulary that is young, white, cisgender, heterosexual and…not disabled.

By

People living with disability are largely excluded from conversations about sexuality, and face overlapping barriers to sexual expression that are both social and physical.

Media portrayals of sexuality often focus on a visual and verbal vocabulary that is young, white, cisgender, heterosexual and … not disabled.

My research into inclusive design explores how design can – intentionally or unintentionally – exclude marginalised or vulnerable people, as well as how design can ensure that everyone is included. That might mean design of the built environment, everyday products, or even how information is presented.

UTS has been collaborating for over a year with Northcott Innovation, a nonprofit organisation based in NSW that focuses on solutions for people with disability, to understand the barriers people face, and how inclusive design can help break them down.

When it comes to sexuality, new technologies have a role to play – but we need to look at both the opportunities and risks that these developments bring.

Starting the conversation

David* is a young man living with cerebral palsy who expresses a deep frustration about being unable to have his sexual desires met. He revealed his thoughts during discussions around sex and disability.

I can’t get into a lot clubs in my wheelchair – or restaurant or cafés for that matter. So where do I go to meet someone? Or go on a date? Let alone if we wanted to be intimate!

Northcott Innovation’s executive director Sam Frain isn’t surprised by what these conversations are revealing:

People with disability want to date, fall in love, or even fall out of love. They want to be recognised as the adults they are. In acknowledging their capacity for meaningful relationships, we must also acknowledge their sexuality – in whatever form that takes.

David faces complex social barriers too. Because it’s hard to for him to discuss his sexuality at all, coming out to his mother feels particularly fraught:

My mum doesn’t really know that I want to meet a future husband, not wife. I want to go on more dates. I don’t just want to meet other men with disability either. I want to meet lots of guys – but where can I go and how do I do this?

Inclusive sex toys

People living with disability have diverse physical and social support needs when it comes to expressing their sexuality. That means there isn’t going to be a one-size-fits-all solution. Rather we need a design approach that allows for customisation.

A new research project at RMIT, led by industrial design lecturer Judith Glover, is investigating the design of customised, inclusive sex toys.

Aside from some engineering research undertaken earlier this year at the University of São Paulo into the neurodildo – a sex toy operated remotely by brain waves – inclusive sex toys are an under-explored area of design research.

Glover feels strongly that designing sexual health products or services – whether for therapy or for recreation – should be treated as any other area of design. She acknowledges that the sex toy industry has barely started to address sex toys for an ageing population, let alone solutions for people with various disabilities:

Some of the people I meet, who are physically incapable of holding and moving objects, may have trouble communicating verbally – yet who really yearn to be able to develop their own sexual practice. Plus who doesn’t need to just get off every once in a while?

David agrees:

I really want to explore the option of sex toys more, but I don’t know what to try, or how to use it.

Social media and intellectual disability

Connecting communities together is an important strategy to overcome marginalisation and amplify the voices of people with disability.

Social media is a space where technology brings like-minded people together. But creating safe online spaces for people to express their sexuality can create unforeseen challenges – particularly for people with intellectual disability.

Deakin University and the Intellectual Disability Rights Service (IDRS) set up a closed Facebook support group earlier this year for people with intellectual disability who identify as LGBTQI. Jonathon Kellaher, an educator with IDRS, says:

Group administrators quickly realised that people who were not “out” and did not understand that group members can be viewed publicly were at risk of accidentally “outing” themselves when requesting to join the group.

To address this issue, the group privacy setting was set to “secret”. But this meant new members had to wait to be added, so it became a barrier to the group’s potential as a social connector. Deakin is now working on a project with GALFA to learn more about how people connect in this space.

Technology must promote inclusion

Then there is the elephant in the room: sex robots.

Manufacturers claim sex robots provide health and social benefits for people with disability, but researchers have been quick to point out that there’s no evidence to support the range of claims that have been made.

While it’s possible to see the introduction of sex robots as a form of assistive technology – a new way to experience pleasure, or to explore preferences and body capabilities – there’s another, more tragic, side.

Viewing sex robots as a solution to the loneliness of people with disability (or anyone for that matter), or as a remedy for a lack of available dates, risks perpetuating and exacerbating the social and sexual exclusion of people with disability.

Technology can’t replace human connection, so it’s critical that new technologies support greater inclusion for people living with disability. It’s a human right to be able to safely express and enjoy sexuality, and have the choice to live a life with pleasure.

For David, that fits in to his ideal world very clearly:

One day I really want a husband to love me, two children, and to own my own restaurant.

Complete Article HERE!

Share

Being paralyzed does not mean I can’t have sex…

Share

and six other myths about sex and disability debunked

Samantha Baines, Matt Tuckey and Shannon Murray debunk some of the biggest misconceptions they come across

By Poorna Bell

Despite pockets of progress, such as online fashion retailer ASOS recently releasing wheelchair-friendly clothing, there is a long way to go when it comes to representation of people with disabilities.

Ignorance abounds because of narrow depictions of living with a disability. Nowhere is this more evident than when it comes to sex.

To counter this, people such as disability awareness consultant Andrew Gurza are driving candid conversations about sex and sexuality. Andrew’s Disability After Dark podcast addresses all kinds of stories around disability and sex. Andrew, who has cerebral palsy, told the Huffington Post last year: “Whenever we talk about sex and disability ― if we dare ― it is in this painfully sanitised way that tends to tell you nothing about the person with a disability, their sex or what they actually want ― it doesn’t shed any light on how it really feels.”

Here, four men and women debunk some of the myths and misconceptions they encounter about sex and disability.

1: ‘Sex with a disabled person must be pretty boring’

Actress Shannon Murray, 41, who experienced a spinal cord injury when she was 14, tells misconceptions about sex and disability still come at her from all corners. “Just like any other human being, disabled people have desire. We want to be touched, to touch, to feel pleasure – why is that still such a ridiculous taboo? Why are intelligent people genuinely shocked when they learn that I have sex?

“If anything, I’d say some of my disabled friends are some of the more sexually adventurous and confident people I know. We have to be creative and find different techniques that work for us and spend every waking hour being adaptable to the environment around us.

“Sex is no different, though it’s much more fun.”

2: ‘I’m not a sexual being’

“There has been a real disservice done to disabled people by the mainstream media who have only told very one-dimensional stories,”  Shannon adds. “You see disabled men who use sex workers, or people who are frustrated and angry at their bodies.

“It can feel very marginalising; it’s all very woe is me. I think that suits the idea that non-disabled people have about our lives: that we’re asexual, incapable or it’s too complicated. However if you venture on to websites or publications aimed at a disabled audience you’ll see a much more rounded and interesting experience.”

3: ‘Being paralysed means I can only have sex missionary style’

Shannon says: “Some of the misconceptions I’ve faced is that I can’t have sex; that I am incapable of having sex; that I must be numb from the waist down; that because I’m paraplegic I can only have sex in the missionary position; that I can only have sex in my chair; that I can’t feel pleasure; that I can’t give pleasure; that orgasms are impossible and that I can’t have children. All of which are untrue.

“It’s also interesting how frequently strangers think it’s perfectly acceptable to ask me about my sex life within an hour of meeting me.”

4: ‘I must be shy in bed because I have a disability’

Far from it, says Joanne*, 51, a housewife who is profoundly deaf. “When I first started having sex, because I could not hear anything, the sounds I was making were extremely loud. I only found out because the man I was having sex with put his finger on his lips in a ‘sssh’ motion. I got really self-conscious – I mean, how loud was I?

“So I decided to record myself masturbating, and asked my best friend to listen to it. To my embarrassment she said I was very, very loud! I soon met my now-husband and our first sexual encounters were strained as I always stopped before things got to a point where I thought I would start getting ‘excited’.

“Finally, I decided to tell him and he laughed because he thought it was his fault and was relieved. In a sensitive way, he said he would always let me know if I was getting too loud and I’ve sort of trained myself to be less noisy.”

5: ‘My hearing aid must be a turn-off’

“I love sex and hearing aids don’t stop me from loving it,” says comedian Samantha Baines, 31, who acquired her disability at the age of 30. “I mean, I do need to take my hearing aid out before sex as they aren’t good with fluids – I don’t want to see my audiologist and explain how I got spunk in my hearing aid.

“Taking your hearing aid out isn’t a very sexy procedure when you are in the moment. It’s a bit like taking your socks off or peeing after sex – it just has to be done.”

@samanthabaines 

6: ‘It’s ok for disability to be treated as a sexual fetish’

Joanne says: “Growing up as a child I was made to wear hearing aids which really were of no benefit to me at all. When I used to go out I always was conscious of it and deliberately made sure that I wore my hair to cover them.

“When I got older, I looked just like any other woman, I just couldn’t hear. Except one guy I dated for a few months always wanted me to wear my hearing aids during sex. I think he found my deafness a turn-on which was strange.”

Shannon adds: “When the odd TV drama includes a story about disability and sex it is always negative or traumatic, or conversely our bodies are fetishised for the non-disabled gaze.

“People with disabilties are not curiosities, we are humans with wants, needs and desires. Treat us with the same respect you would any other person that you’re interested in. It’s really not rocket science.”

7: ‘You don’t look disabled so you don’t have to tell sexual partners about it’

“I’ve been guilty as anyone else of not seeing disabled people as sexual beings,” says Matt, “but I’ve realised keeping it hidden is so much harder than being honest about it. Around the time I was correctly diagnosed, I met someone in a club.

“After a couple of conversations over the next few days she started to realise that I had short term memory loss. For the first time I could be open with a woman about my memory difficulties, rather than pretending I’d just forgotten something as a one-off. Two weeks later, I’d lost my virginity to her.”

Complete Article HERE!

Share

For Some With Intellectual Disabilities, Ending Abuse Starts With Sex Ed

Share
Katy Park, who runs arts and wellness programs for Momentum — a community service program for people with intellectual disabilities — starts a class on healthy sexuality by asking her students to define what they want in a relationship.

by Joseph Shapiro

[I]n the sex education class for adults with intellectual disabilities, the material is not watered down. The dozen women and men in a large room full of windows and light in Casco, Maine, take on complex issues, such as how to break up or how you know you’re in an abusive relationship. And the most difficult of those issues is sexual assault.

Katy Park, the teacher, begins the class with a phrase they’ve memorized: “My body is my own,” Park starts as the rest join in, “and I get to decide what is right for me.”

People with intellectual disabilities are sexually assaulted at a rate more than seven times that for people without disabilities. NPR asked the U.S. Department of Justice to use data it had collected, but had not published, to calculate that rate.

At a moment when Americans are talking about sexual assault and sexual harassment, a yearlong NPR investigation finds that people with intellectual disabilities are one of the most at-risk groups in America.

“This is really an epidemic and we’re not talking about it,” says Park, a social worker who runs arts and wellness programs for Momentum, an agency based in Maine that provides activities in the community and support services for adults with intellectual disabilities. Those high rates of abuse — which have been an open secret among people with intellectual disabilities, their families and people who work with them — are why Park started this class about healthy relationships and healthy sexuality.

Because one of the best ways to stop sexual assault is to give people with intellectual disabilities the ability to identify abuse and to know how to develop the healthy relationships they want.

“Let’s talk about the positive parts of being in a relationship,” Park says, holding a marker while standing at a whiteboard, at the start of the class. “Why do we want to be in a relationship?”

“For love,” says one man. “And sexual reaction.”

“Romance,” adds a woman.

“How about support?” asks Lynne, a woman who speaks with a hushed voice and sits near the front of the class.

“Having support, right?” Park says, writing the word on the board. “We all want support.”

A participant helps Park hang the agenda on the wall at the start of class.

From working with the men and women here, Park realized they want to have relationships, love and romance. They see their parents, siblings and their friends in relationships. They see people in relationships when they watch TV or go to the movies. They want the same things as anyone else.

But it’s harder for them. When they were in school, most of the adults in this room say, they didn’t get the sex ed classes other kids got. Now, just going on a date is difficult. They probably don’t drive or have cars. They rely on public transportation. They don’t have a lot of money. They live at home with their parents or in a group home, where there’s not a lot of privacy.

And then there’s the one thing that really complicates romance for people with intellectual disabilities: those high rates of sexual abuse.

“Oftentimes, it actually is among the only sexual experience they’ve had,” says Park. “When you don’t have other healthy sexual experiences, how do you sort through that? And then the shame, and the layers upon layers upon layers.”

This class, she says, is about “breaking the chain, being empowered to say, ‘No. This stops with me.’ “

“I Think People Take Advantage”

The women and men come to Momentum during the week for different programs. They go kayaking and biking; they go to the library and do volunteer work at the local food bank. There’s a range of disability here. You can look at some of the men and women — maybe someone with Down syndrome — and see they have a disability. Others, even after you talk to them, you might not figure out they have an intellectual disability.

Like one small woman with short, choppy dark hair, streaked red.

She’s 22 now, but when she was 18, her boyfriend was several years older. She says he was controlling. He didn’t let her have a cellphone or go see her friends.

“He was strangling me and stuff like that,” says the woman. (NPR is not using her name.) “And he was, the R-word — I hate to say it, but rape.” She says he raped her eight times, hit her and kicked her. “So I don’t know how I’m alive today, actually. He choked me where I blacked out.”

She thinks she was an easy target for him, because of her mild intellectual disability. “I think people take advantage,” she says. “They like to take advantage of disabilities. I have disabilities, not as bad as theirs. But I think they like to take advantage, which is wrong. I hate that.”

A student takes notes in Park’s Relate class.

She says the class helped her better understand what she wanted, and had a right to, in a relationship. She’s got a kind and respectful boyfriend now.

Her friend Lynne listens and says she would like to find a boyfriend. But in her past, she has experienced repeated sexual abuse.

She talks about a time when she was 14 and “this older guy that knew us” forced her to have sex. She says she told people but no one believed her. The next year, when she was 15, she was sexually assaulted — this time by a boy at her school. “I was trying to scream,” she says, “but I couldn’t because he had his hand over my mouth, telling me not to say anything to anybody.”

Lynne, who is 38, says those rapes and others left her unable to develop relationships. “I couldn’t trust anyone,” she says. Lynne (NPR has agreed to identify her by her middle name) says this class has helped her realize she wants a real, romantic relationship and has taught her how to better find one.

“There’s A Lot Of Loneliness”

Katherine McLaughlin, a New Hampshire sex educator, developed the curriculum used by Momentum. She wrote it so that it uses concrete examples to describe things, to match the learning style of people with intellectual disabilities. It shows pictures and uses photographs.

McLaughlin says the main desire of adults with intellectual disabilities is to learn “how to meet people and start relationships. There’s a lot of loneliness.”

That loneliness leaves them vulnerable to getting into abusive relationships, she says, or to rape.

Sometimes, especially when they’re young, they can’t name what happened to them as a sexual assault. Because they didn’t get the education to identify it. “We don’t think of them as sexual beings. We don’t think of them as having sexual needs or desires,” McLaughlin says. “Often they’re thought of as children, even when they’re 50 years old.”

Sheryl White-Scott, a New York City internist who specializes in treating people with intellectual disabilities, estimates that at least half of her female patients are survivors of sexual assault. “In my clinical experience, it’s probably close to 50 percent, but it could be as high as 75 percent,” she says. “There’s a severe lacking in sexual education. Some people just don’t understand what is acceptable and what’s not.”

Most of the women and men at the class in Maine say they didn’t get sex ed classes, like other kids, when they were in school. Or if they did, it was the simplistic warnings, like the kind given to young children. “It’s easy to fall back on ‘good touch-bad touch’ sex ed,” says Michael Gill, the author of “Already Doing It: Intellectual Disability and Sexual Agency.” “That’s a lot of what they get.” And the usual warning about “stranger danger” can be unhelpful, because it’s not strangers but people they know and trust who are most likely to assault them.

Most rapes are committed by someone a victim knows. For women without disabilities, the person who assaults them is a stranger 24 percent of the time. NPR’s data from unpublished Justice Department numbers show the difference is stark for people with disabilities: The abuser is a stranger less than 14 percent of the time.

“Parents get this; professionals don’t,” says Nancy Nowell, a sexuality educator with a specialty in teaching people with developmental disabilities, an umbrella term that includes intellectual disability but also autism.

Park asks her students to weigh in on agreements with a thumbs up or a thumbs down during class.

Parents have significant reason to worry: Figuring out what’s a healthy relationship is difficult for any young person, and it can be even trickier if a person has an intellectual disability. People with intellectual disabilities are vulnerable to problems from rape to unwanted pregnancy. Some people with intellectual disabilities marry. A small number have children — and rely on family or others to support them as parents.

Still, says McLaughlin, parents often are reluctant to talk to their children with intellectual disabilities about sex. “Parents often feel, if I talk about it they will go and be sexual,” she says, and they fear that could make them targets for sexual assault.

But educators such as McLaughlin, Gill and Nowell argue the reverse: that comprehensive sexuality education is the best way to prevent sexual assault. “If people know what sexual assault is,” says Gill, an assistant professor of disability studies at Syracuse University, “they become empowered in what is sexuality and what they want in sexuality.”

Respect

Gill argues that a long history of prejudice and fear gets in the way. He notes early 20th century laws that required the sterilization of people with intellectual disabilities. That came out of the eugenics movement, which put faith in IQ tests as proof of the genetic superiority of white, upper-class Americans.

People with intellectual disabilities were seen as a danger to that order. “Three generations of imbeciles are enough,” Supreme Court Justice Oliver Wendell Holmes famously wrote in a 1927 opinion that ruled the state of Virginia could forcibly sterilize a young woman deemed “feebleminded.”

Carrie Buck was the daughter of a woman who lived at a state institution for people with intellectual disabilities. And when Buck became pregnant — the result of a rape — she was committed to a state institution where she gave birth and was declared mentally incompetent to raise the child. Buck was then forcibly sterilized to prevent her from getting pregnant again. There was evidence that neither Buck, nor her daughter, Vivian, was, in fact, intellectually disabled. In the first half of the 20th century, impoverished women who had children outside marriage were often ruled by courts to be “feebleminded.”

There was another myth in popular culture that people with intellectual disabilities were violent and could not control their sexual urges. Think about that staple of high school literature classes, John Steinbeck’s “Of Mice and Men.” The intellectually disabled Lennie can’t control himself when the ranch hand’s wife lets him stroke her hair. He becomes excited, holding her too tight, and accidentally strangles her.

The class in Maine aims to help these adults know what’s a healthy relationship and how to communicate how they feel about someone.

The main way this class differs from a traditional sex ed class is that — to help people with intellectual disabilities learn — the material is broken down and spread out over 10 sessions. Each class lasts for 2 1/2 hours. But the adults in the class are completely attentive for the entire session.

They do take a couple of very short breaks to get up and move around, including one break to dance. Everyone gets up when Park turns on the tape recorder and plays — just right for this group asking to be treated like adults — Aretha Franklin singing “Respect.” There is joyous dancing and shouts. And when the song is over, they go back to their seats and get back to work.

Complete Article HERE!

Share