Sex, technology and disability – it’s complicated

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

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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!

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

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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!

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Sexuality education for parents of young people with Down Syndrome

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By Kim Cavill

When I first started teaching sexuality education, I focused on people with disabilities, the parents and carers of people with disabilities, and professionals who worked with people with disabilities. I truly loved my work. When I moved back to the United States, I attempted to bring that work with me, pitching various disability support organizations around Chicago to teach sexuality education. The best response I got was…let’s call it polite disinterest.

That is why my heart leapt when I heard about Katie Frank, who works at the Adult Down Syndrome Center in Park Ridge, and she was kind enough to spend an hour with me to talk about her work in sexuality education for parents of young adults with Down Syndrome.

Katie has a PhD in Disability Studies from the University of Illinois at Chicago, where her dissertation was “Parents as the Primary Sexuality Educators for their Adolescents with Down Syndrome.” She has been the primary investigator on multiple research studies including individuals with DS and/or their families, and has had her work published in peer reviewed journals. I spoke to her about sexuality education for parents of young people with Down Syndrome.

I asked Katie where she usually starts with parents and carers of young people with Down Syndrome in regard to sexuality education. She said she likes to start with questions. Parents tentatively bring up the subject of sexuality education for many different reasons. Rather than make assumptions, Katie seeks out more information by asking questions like, “Why are you thinking about this right now?” Parents’ answers range from issues around public vs private behaviors, to discomfort with self-stimulation. Others do not how to respond when their child declares an intention to get married. Despite the wide variety of circumstances that lead families to Katie, research shows that most parents avoid these conversations because they’re scared, and understandably so. Katie reassures parents that sexuality education is not just about sex. In fact, many times, it is not about sex at all. Frequently it’s about dating, relationship skills, needs for companionship, or general life goals. She also tells parents that sexuality education is not just a one-time conversation, but rather a habitual use of teachable moments to both gauge and add to a young person’s understanding.

Katie says that parents, not educators, should be the primary teachers of sexuality education. For many young people with Down Syndrome, schools and supportive service agencies are ill-equipped to teach sexuality education in a way that is tailored to individual understanding and learning needs. If a young person with Down Syndrome is in an inclusive classroom, the material is not necessarily presented in a way that maximizes their understanding. If a young person is in a special education room, the teacher is highly unlikely to be even the least bit comfortable teaching sexuality education. Therefore, Katie believes that parents are best positioned to be the primary teachers of sexuality education for their children.

So, where should parents start? Katie directed me to many helpful resources, which you can find here. Some of those resources include books written by the incomparable Terri Couwenhoven. The Adult Down Syndrome Center also offers in-person services for qualifying families. These services include monthly social skills workshops on topics like friendship, dating, and social awareness. The center also offers health services and consultations.

Katie is currently running a research study at the center for family-based sexuality education training for parents of young adults with Down Syndrome. The training is free for parents of young adults (ages 20-30) with Down Syndrome. The study will investigate the effectiveness of a family-based sexuality curriculum for parents of young adults with Down Syndrome. So far, Katie is pleased with the results of the study, which measures improvement in self-efficacy and attitudes around sexuality and healthy relationships, as well as increases in parent-child communication on sexuality-related topics. Participants must be able to communicate in English and be available to meet three times over a four week time frame for three hours (9 AM – 12 PM). A follow-up survey must be completed one month after the final training. It is offered at the Adult Down Syndrome Center in Park Ridge, IL, and there are several date options available through the summer and early fall (of 2017). Please contact Katie, or call 847-318-2303, if you are interested in participating.

When I worked in sexuality education for people with disabilities, many asked me why my job existed at all, implying that people with disabilities have no need for this information. That is simply untrue. Sexuality education includes information about puberty, social expectations, relationship skills, what is/is not legally permitted, body autonomy, and risk-management. Those topics are relevant to all human beings, regardless of whether they are typically-developing or not. The mechanisms for delivering that information and the level of detail required are the only things that change. I was very grateful to meet Katie, who is doing the important work of making sure families have access to the information and services they require to live healthy, fulfilled lives on their own terms.

Though I wish I could summarize all of Katie’s insight from the fascinating hour we spent together, I can at least leave you with this:

“None of us knows all the answers to all the questions, which is why we all must learn to keep asking.” – Katie Frank

Complete Article HERE!

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