Category: Muscular Dystrophy

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Think You Can’t Have Good Sex After a Chronic Illness Diagnosis?

Think Again!

Your sex life shouldn’t be halted because of bad advice, embarrassed doctors, or a lack of knowledge.

by Amy Mackelden

Receiving an unexpected diagnosis can affect every aspect of your life, including your sex life.

There are so many misconceptions when the topics of chronic illness and sex converge, making it a potentially scary subject for anyone learning to live within their “new normal.”

I was diagnosed with relapsing-remitting multiple sclerosis (RRMS) 2 weeks after my 30th birthday, and I had a plethora of questions on my mind, some of which involved my sex life.

Multiple sclerosis (MS) is a chronic condition in which a person’s nervous system attacks itself, creating lesions on the brain and spine, often damaging the nerve pathways. This can result in numbness, tingling, itching, nerve pain, spasticity, mobility changes, and many other symptoms.

As a result, I knew my sex life was going to change, but I had no idea how.

It took some time, but I eventually discovered it was possible to have a satisfying sex life while living with a chronic illness and disability.

It might seem obvious to anyone who’s living with a lifelong condition or disability that sex is often an important aspect of our lives. However, when it comes to seeking medical advice following a life altering diagnosis, sex regularly goes unmentioned.

Research shows that many healthcare providers have limited knowledge of and confidence in talking about sexuality and chronic illness and disability. They’re also commonly really uncomfortable bringing it up with patients.

Meanwhile, research is limited on sexual dysfunction related to chronic illness. It makes sense, then, that some medical professionals may be uncomfortable addressing the subject with patients.

However, this lackluster response can sadly make those of us with chronic conditions feel as though we’re asking too much, or that the support we need just isn’t available.

If, like me, you’ve broached the subject of sex with a medical professional, it’s likely that you’ve also had mixed results.

Some suggestions have been helpful, from “use more lube” to “have sex earlier in the day to avoid fatigue.”

Others have made me question whether my sex life is important, and more specifically, if anyone else believes that my sex life is worth saving.

However, it’s crucial to find the right healthcare provider who understands the unique needs of someone facing a difficult diagnosis or lifelong condition.

It’s impossible to explore all of the ways that a chronic illness or disability might affect a person’s sex life, especially as each individual will be affected differently.

After finding out that I have MS, my sex life changed, first for the worse, and then for the better.

I had a major relapse that affected both of my legs and caused numbness from the waist down. This made sex an uncomfortable experience for several months afterwards, and I lost the ability to feel orgasms.

There were times I wondered whether I’d ever experience an orgasm again. Sex itself felt strange and made me tingle all over, not in a good way.

My body has also been affected by pain, mobility changes, and fatigue, but I’ve persevered in spite of any difficulties because I didn’t want to give up on having a sex life.

While I’ve spoken to some wonderfully supportive doctors and medical professionals, it’s also been suggested that companionship is more important in a relationship and that I should make the most of what I have, even if it doesn’t involve sex.

The implication, of course, was that sex was somehow less important to a person with an incurable illness, but that’s simply not the case.

When it comes to disability, people often speak of accessibility, so why shouldn’t the same parameters extend to having sex?

Here are some of the things that might make sex more accessible (and more fun!) if you’re living with a chronic illness.

Communication is key

While it might sound obvious, communication is key in any relationship.

“Some people believe that if two people love each other, sexual activities should automatically feel mutually wonderful and satisfying,” says Lee Phillips, EdD, LICSW, a licensed clinical psychotherapist and AASECT certified sex therapist.

“The number of sexual problems reported by people with chronic illness demonstrates all too conclusively that there is nothing automatic about sex,” says Phillips.

It’s all too easy to feel frustrated when sex and intimacy don’t magically happen the way we want it to.

When one or both partners in a relationship have a disability or chronic illness, it’s more important than ever to talk through any issues or concerns there might be.

For instance, sometimes my condition affects my ability to physically feel anything during penetrative sex, and I always let my partner know about any new symptoms or changes I’m experiencing.

“Sexual communication is critical because it can address sexual likes and dislikes, turn-ons and turn-offs, sexual needs and desires, sexual fears and concerns, past positive sexual experiences, and past negative sexual experiences,” says Phillips. “It is the key ingredient for enhancing a sex life.”

Explore intimacy and your ‘new normal’

While not everyone will be interested in therapy after receiving a surprising medical diagnosis or adjusting to life with a disability, finding a therapist who understands your needs could make all the difference.

“I always call therapy the safe container,” says Phillips, who hosts the Sex & Chronic Illness podcast.

“It is the place where people who are chronically ill feel safe and it is a place where they are not judged. It is the place where they can learn the skills in using their voice. This helps them become more aware and assertive in expressing their sexuality.”

If you’ve recently received a diagnosis, then it’s possible you’re feeling shell-shocked and lacking in confidence.

This is why considering therapy and finding a specialized therapist could be particularly helpful, especially if you’re dealing with relationships, intimacy, and sex.

“We have to realize that when so much changes in a person or a couple’s life due to chronic illness, a satisfying sex life can be one way to feel healthy and normal,” says Phillips.

Get creative

Whether you’ve always hoped to explore your sexuality in more depth, or you’re looking to spice things up post-diagnosis, it’s always possible to create more fun, excitement, and surprises in your sex life.

“When living with a chronic illness, sex can be a powerful source for comfort, pleasure, and intimacy,” Phillips says. “Therefore, I always say that you have to get curious about your partner and get creative with your sex. People start to look at this as a new sexual adventure because so much has changed due to chronic illness.”

If, like me, your physical sensations have changed with your chronic illness, you might need to try new positions and techniques to achieve orgasm or feel good during sex.

If you can, try viewing this as a positive thing rather than a burden and an opportunity to create greater intimacy with a partner.

Depending on your illness or disability, you may not be able to restore sensation to certain part of your body. That doesn’t mean pleasure isn’t possible.

“Focus should be on stimulation to the chosen area without any plans of moving to any other areas or having sexual intercourse,” says Phillips. “These exercises place the emphasis on intimacy and pleasure over the goal of performance and orgasm.”

If your body has changed because of a chronic condition or disability, then using toys or props might help. (If you have regularly bemoaned the lack of fully accessible sex toys, a new company, Handi, might soon have the answer.)

Don’t give up if you don’t want to

Perhaps the most important thing to remember is that the choice of whether to have a sex life is yours and yours alone.

Whether you’re working on your orgasm solo (like I needed to do), or you’re embracing sexual intimacy with another person, your sex life is yours.

It shouldn’t be halted because of bad advice, embarrassed doctors, or a lack of knowledge.

Complete Article ↪HERE↩!

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Hospital’s new online workshop helps parents talk about sexual health with kids with disabilities

By Zosia Bielski

Having “the talk” fills most families with dread. For parents of teens with disabilities, the conversation often takes on an added layer of complexity. Parents want to keep their especially vulnerable children close and safe, while instilling independence and strong self-esteem. They want their kids to assert their own boundaries, even as these children often require assistance with many aspects of their daily lives. Parents want their youth to go out into the world and have healthy relationships, but they worry because disabled people are at increased risk of abuse.

In a bid to help, Toronto’s Holland Bloorview Kids Rehabilitation Hospital launched a new online tool Monday designed for parents looking for insight into how to speak meaningfully with their disabled youth about sex. The new workshop, available free to the public off the hospital’s YouTube channel, covers everything from good relationships and consent to gender identity and social media – this for a cohort often left out of the sex ed discussion, thanks to lingering stigma around disabled people’s sexuality.

“We have needs and desires as well. We need to be educated on how to navigate these situations and have these conversations without it feeling like it’s such a taboo topic,” said Emily Chan, who co-designed the new workshop as chair of the hospital’s youth advisory council.

Chan, 22, has centronuclear myopathy, a rare neuromuscular condition. She said parents of those with disabilities often keep a “tight rein” on their children, but she urged them to speak with their kids about healthy relationships early, “not waiting until we’re heading into adulthood, or already in adulthood.”

The online workshop follows the release last week of new guidelines that recommended sexual health education be made available at short- and long-term care facilities serving youth with disabilities or chronic illnesses, with information geared toward their specific needs. Colleges and universities should offer comprehensive sex ed training to those studying to be caregivers and personal support workers for disabled people, according to The Canadian Guidelines for Sexual Health Education from the Sex Information & Education Council of Canada, a non-profit organization promoting sexual and reproductive health.

Joanne Downing sets the same priorities when she talks to her three children, ages 17 to 21, including her 19-year-old son Matthew, who has quadriplegic cerebral palsy and is non-verbal. Downing wants them all to be safe, respectful and make good choices.

“We talk about ‘my space, your space,’ and ‘good touch, bad touch,’” Downing, 57, said about Matthew. “He can understand whether or not he’s crossed that barrier or if someone’s crossed that barrier on him.”

Downing offered a family perspective for the new webinar and coached parents at two workshops held at the hospital over the winter. Talking to her own son, Downing uses proper terminology for body parts, and explains the difference between private and public space. One thing she recommends parents do with their disabled teens is differentiate between platonic friendships and romantic or sexual relationships.

“[Matthew’s] perception of having a girlfriend is someone of the opposite sex who’s a friend that he can hang out with,” Downing said. “He definitely likes girls and he flirts. He loves it. He knows pretty much every single swim instructor at the pool.”

Downing stressed the importance of striking a balance between autonomy and safety. Even though she’s involved in every facet of Matthew’s life and care, the mother has also taught her son how to ask for privacy.

Autonomy is critical to discussions of sex ed with this cohort, according to Yukari Seko, a research associate at Bloorview Research Institute, who along with social worker Gabriella Carafa developed the new online workshop. “Research shows that parents of children with a disability can be overprotective, and understandably so because they need more help,” Seko said. “But it can sometimes hinder their transition to adulthood. They need to learn and practice taking some risks.”

Opportunities to be independent – and to fail – are integral to figuring out what you want and don’t want in adult life, said Chan. “Youth need the chance to explore their environment and their relationships with others, to not be afraid to make mistakes and to learn from those mistakes,” she said. “You need to be able to get out into the real world and have those experiences to shape your personality, beliefs, values and how you approach different situations.”

At the same time, safety is a very real concern for these parents. Children and youth with a disability or chronic health condition are at an increased risk of sexual abuse, according to the Canadian Paediatric Society.

Miriam Kaufman, author of the Society’s report on this issue and the book Easy for You to Say: Q and As for Teens Living With Chronic Illness or Disability, said it is particularly important for parents of disabled youth to discuss consent, not only because these children can be more physically vulnerable but also because they’ve gotten conflicting messages about bodily autonomy all their lives.

“We have trained, from birth practically, young people with disabilities and chronic health conditions to put up with things that in any other context would be considered abuse: medical procedures, painful procedures … being held down for procedures and being told not to yell and to co-operate,” said Kaufman. “We train these kids from a young age that it’s okay for these strangers in the health care system to have access to their bodies. … They’ve learned that they don’t really have ownership of their bodies.”

It’s always a fine tightrope for parents of kids with disabilities, Kaufman said, who are trying to protect their children while helping them develop positive self-image. “Most parents also want their children to grow up sexually healthy, to be able to have relationships and be happy in those relationships,” Kaufman said. “They don’t want to totally freak them out about sexuality, in terms of protecting them.”

At Holland Bloorview, Seko urged families of disabled youth to educate themselves on these issues, but also to listen to their kids’ questions and observations.

“They are the experts of their life, too,” Seko said.

Complete Article ↪HERE↩!

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Sex & Accessibility 101:

How to Have Super Hot Sex with or as a Disabled Person

By

I was once a horny and confused disabled teenager, and somehow managed to come into my own as a horny and downright pervy disabled adult. Growing up, no one ever talked to me about sex or sexuality. Outside of my peer groups (and often times even within them), sex was a touchy issue. Doctors, educators, family — they all functioned from a place that sex wasn’t for someone like me. And woof, how do you feel good initiating conversations about your bod and all the things you find yourself wanting to do with it when even your doctor seems squeamish about it?

Fast forward to 2018, and doctors are still garbage. But I like to think that we queers of the world are ever-evolving, and as result, getting pretty hip to the concept that all different kinds of bodies want to connect with other bodies. With that in mind, I’m not going to waste any time defending the desirability of disabled folks. Disabled folks are desirable. Period. Disabled bods and access needs are still left out of the conversation when it comes to S-E-X and well… f*ck that. So settle in and hang out for a minute. We’ve got a lot to talk about.

Disability Sexuality

Disabled folks make up the largest minority population in the world; upwards of 20% of people in the US are living with a disability. This means whether you, yourself, are disabled or not, disability touches everyone in some way or another. Our genders and sexualities vary as much as anyone’s, but our access to communities that affirm (or allow us to explore) our genders and sexualities is frequently lacking. Navigating sex and disability as a queer person has its challenges, but outside of societal misconceptions and misinformation, it’s not necessarily any more (or less) complicated than navigating any other body or sexuality. Bodies are weird. Sex is weird. Weird is good.

While the information here can be useful for anyone, this guide primarily focuses on physical access needs in sex. Disability is an incredibly broad umbrella term. There are a lot of different ways that disability exists in the world, and needs and considerations vary greatly. This is in no way meant to be definitive or all-encompassing. All bods are different and need different things. That’s kind of the point. As always, take what applies and feels good for you.

Communication

Inarguably, communication is the key to good sex, period. But, for disabled folks (and the babes that love them), those conversations may feel a little more vulnerable than conversations some able-bodied folks are used to having, and it helps to learn better ways of navigating them.

It should go without saying, but assumptions never do anyone any good in the bedroom (or anywhere, really). It’s important to find ways to communicate your wants and needs without ambiguity. Knowing what you want can be half the battle whether you have accessibility needs or not, so don’t be afraid to do a little work in finding that out for yourself. Handy worksheets like this old gem from our own Austen, Ara, and Geneva can help you not only brainstorm your own wants and needs, but find common ground with your partner. Talking about you want to do with your partner, also opens up the line of communication to advocate for the things you may need in order to do it. If you’re feeling anxious, try to remember that these conversations feel vulnerable for all bods involved, so be kind to both yourself and your partner! Initiating potentially vulnerable conversations about sex and bodies can work best outside of the bedroom. Talking about sex can feel daunting enough; changing up the space and talking it out before you’re in the bedroom can help ease some of the pressure and help you connect.

If you’re able-bodied and your partner isn’t, remember that when your partner is opening up to you about their body, it’s a conversation, not an inquisition. Make sure you’re meeting them in the middle, not putting them through an interview. Talk about your own boundaries, needs, hopes and expectations. Rather than “How do you…?” or “Can you…?” lines of questioning, focus on pleasure (i.e. “What are you into?” “What feels good for you?”). Your interest is in finding out what makes them feel good, not unraveling the mystery of their body. Good conversation topics to consider: preferred words/terms for parts, parts of the body you do or don’t like to have touched/seen/etc., body sensitivity or pain.

A common don’t that comes up all too often is the dreaded “I don’t even notice,” “You’re pretty/handsome for a disabled person,” or “You’re not disabled to me!” Able-bodied folks tend to think these are compliments, but I can assure you as a person who’s heard it all, they aren’t. The last thing anyone getting down and dirty with you wants to hear is that you don’t see them, or that you have to avoid parts of them to feel attraction for them.

If you’re disabled and wanting to open up communication, remember that communicating with your partner is a back and forth. You’re not responsible for sitting under a spotlight and disclosing your medical history, and you should never feel pressured to say or do anything that doesn’t feel right for you. Everybody’s got needs and expectations in physical and intimate relationships! Try not to feel weighed down sharing yours.

Communication while getting down is important, too. Tell your partner when they’re making you feel good, and be open to vocalizing (and switching things up) when something’s not working for you. Likewise, be open to hearing from your partner when something isn’t working for them.

The effort it takes to hone your communication skills really pays off; it feels good to know what you partner needs and expects from you, and it feels really good to know that your partner cares about what you need. Besides, talking about sex is great foreplay, pal!

Getting Down

Setting the scene

One thing disabled folks with physical access needs are beyond familiar with is the need for preparedness. Sometimes we can get bogged down by all the little details needed to make a space accessible; sex is really no different in that regard. Setting the scene for the sex you want helps ease anxiety surrounding unwanted interruptions or time-outs. It helps keep things flowing, and builds up the anticipation — which can be exciting!

Making sure that your harnesses, toys, positioning furniture, lube, and clean up supplies are within reach is a great start, but there’s more you can do to set the mood. Don’t underestimate the power of intention!

For folks who experience incontinence, waterproof pads and blankets can help with anxiety surrounding unwanted (or wanted!) messes.  While any mattress pad could do the trick, items made for play such as the Liberator Fascinator Throw, or the Funsheet can make the playspace feel less sterile and more sexy. Think about what kind of material makes you feel best in these situations. Throws like the Fascinator absorb fluid without leaking through, whereas items like the Funsheet do not absorb fluids (which can potentially feel overwhelming for some folks). Regardless of your preference, when sexy time is over, just toss your sheets/throws into the washer and you’re good to go. Anxiety surrounding incontinence can feel like a lot, but try to remember that honestly all sex is messy and that’s often half the fun.

Lube & Barriers

Lube is f*cking important! This is true for everyone, but especially when stimulating a part of the body that has limited or no sensation. Apart from wanting to avoid general injury, many conditions can make it difficult for a body to produce its own lubricant. Find a lube that works well for you and your partner and use that lube generously.

I won’t go too ham in talking about barrier methods, but I will note that there are a lot of options to consider, from a proper fitted condom on penises and dildos/vibrators, to dental dams, and the very poorly named “FC2 female condom.” Be sure to be conscious of sensitivities to frequently used materials such as latex (and less commonly allergenic) nitrile/neoprene. It’s best to stay clear of barriers with added flavoring or spermicides. Always remember to check your lube is safe for use with the barrier method you’re using!

Positioning

There are an infinite number of ways to get two bodies to connect in just the right way. Shaking things up and exploring the way things feel best not only ensures you and your partner’s comfort, it’s also just hot and fun. There are gender- and sexuality-inclusive online quick guides like this one from The Mighty that may help get your creative juices flowing. There’s also positioning harnesses and slings like Sportsheets’ Super Sex Sling and Doggie Style Strap that can help take some of the pressure off of strenuous positioning. Sportsheets is a disability-inclusive brand also offering items like shower suction handles and foot rests, and other positioning tools that can aid in accessible play.

If your partner needs help transferring out of a chair or another assistive device, let them guide you in helping them properly. Don’t ever lift or move a partner without being asked to, and don’t ever move assistive devices to unreachable places unless your partner asks you to.

Harnesses

For some with limited mobility, spasticity or pain in the pelvic/hip region, standard harnesses may not be an option for strap-on sex. Fortunately, there are multiple harness options for those looking for accessible ways to engage in penetrative play, and getting creative in the harness department can be just as hot as it is practical! Sportsheets offers a thigh harness and the La Palma from SpareParts offers a gloved hand option. For folks with penises using strap-ons, SpareParts Deuce is a great option. Designed to be wearable regardless of ability to achieve erection, the harness has an upper ring for use with a dildo, and a lower ring for penis access.

Toys

This is the part where I might as well start by throwing my hands in the air praising the Hitachi Magic Wand. As a stubborn contrarian I’d love to find a reason to tell you why it doesn’t live up to its hype, but I’d be lying. Apart from being probably the greatest sex toy on earth, with its strong vibrations, large head, and versatile modification options, it’s also probably one of the most accessible. There are hitachi toy mounts like this one from Liberator, various head attachments, speed controllers (which do need to be plugged into the toy/wall, but also extend the range quite a bit), and good ol’ DIY mic stand setups. The rechargeable wand does away with the need to stay plugged in and is worth every penny for the upgrade.

For anal stimulation, b-vibe offers a wide selection of remote vibrating anal toys in a variety of sizes and shapes, eliminating the need to reach down to adjust or change settings on the toy during use. For comfortable wear in seated positions, try options with a thin base like the snug plug or the pleasure plug from Fuze.

For folks with penises who may be experiencing what sex expert Joan Price refers to as erectile dissatisfaction or unreliable erection due to paralysis, but want to engage in penetrative sex, ppa/extenders like Vixen’s Ride On paired with a comfortable harness can be helpful in achieving penetrative sex with a partner. The Pulse 3 Duo is also a great partner toy option for folks with penises of varying functionality.

If you can, skip the ableist toy manuals that come with most sex toys and instead, talk to a sex educator at your local progressive sex shop about your prospective products and how to use them safely and care for them. It’s well-documented that there’s historically been (and continues to be) a problem with unfavorable language in a LOT of sex toy user manuals and packaging. If you don’t have access to local progressive sex toy shops, shops like The Smitten Kitten, She Bop, Early To Bed, and Babeland all have online stores and customer service options that can be really helpful.

After Care

Lastly, be sure to check in. After care isn’t an option; it’s a major part of play. Talk to your partner about what feels good for both of you when play is over. Maybe you or they need to be held, or like a glass of water when things are winding down. If incontinence is a concern, it may help to have a course of action pre-planned for cleaning up in a way that helps to relieve stress or discomfort.

Ultimately, there are plenty of tools and tips to achieve the sex you want, but the bulk of the work relies on successful communication. Remember to think beyond speaking, and consider how you’re listening. Are you doing what you can to create a connection that supports your partner in voicing their wants and needs? Supporting your partner through the vulnerable parts paves way for the creativity that comes with engaging and fun sex.

A few quick references:

The Ultimate Guide to Sex and Disability

Disability After Dark Podcast

Exile and Pride: Disability, Queerness, & Liberation

Complete Article ↪HERE↩!

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Sex, technology and disability – it’s complicated

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↩!

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

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 i 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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Yes, I use a wheelchair and I still have sex

Comedienne Romina Puma dispels some of the most common misconceptions around disabilities

By Romina Puma

[D]isability and sex are two words that, for some reason in our society, do not go together. Most people assume that if you’re disabled, sex is not part of your life. Many find it hard to believe that disabled people date, have relationships or even like to have one-night stands

I’m a comedian who has muscular dystrophy. I’m nearly 40 and, while dating can be difficult for everyone, if you’re disabled, it makes it even harder – trust me. I haven’t been disabled all my life though. Ten years ago I was diagnosed with muscular dystrophy, a progressive muscle wasting condition.

I am not your personal Wikipedia/Google, I have feelings.

My sex life before my diagnosis was good. I always seemed to have boyfriends on the go or be having fun with men. I’m not the most beautiful girl, but I know how to seduce a guy, which helps when you are not exactly a Victoria Secret type.

Before I became a full-time wheelchair user, I used to go out on crutches and it was still possible for me to hide the condition and get lucky. But all of a sudden, about three years ago, my condition got worse and I couldn’t walk anymore. Everything changed. Since I have been using a wheelchair, my dating experiences have become a lot less frequent.

Guys ask me all manner of questions – some I don’t mind, but others can take it a step too far. They all want to know…

“Can you have sex?”

This is a common misconception. Most people only think about sex in terms of penetration. How wrong they are. There are so many other ways to reach that goal by exploring each other’s bodies – the pleasure can be so much more. However, the answer is yes, I can and do have sex!

“Can you feel anything?”
Yes, I can! I understand that most people believe the equation: wheelchair user = paralysed = cannot feel anything. But this assumption is wrong, for at least two reasons. One is, if you see someone in a wheelchair, it does not necessarily mean that person is paralysed. Second, there are many bases to explore when having sex. It’s not only about penetration! And toys can also help.

Then we have the strange requests…

“Will you bring your wheelchair?”
No, I just use it for fun and because I’m lazy! Some time ago, I used a profile picture of me sitting sideways on my wheelchair for an online dating website. Aside from not having much luck, one guy asked me if the wheelchair was a prop. After that, I deleted my account. No point staying on that site anymore.

“How long do your batteries last?”
Longer than most men in the bedroom!

“If we have sex, will I get your disease / impairment?”<
Well, Muscular Dystrophy is genetic so no you can’t catch it.

It’s time to #EndTheAwkward

There’s a lot of misunderstanding about disability out there. I think it’s always best to ask a person about their impairment, as long as you aren’t being offensive. Most disabled people prefer to talk about it rather than let things be awkward. But it can be very hurtful when your dream guy asks you all those questions and then they disappear. I am not your personal Wikipedia/Google, I have feelings.

I am part of Scope’s #EndtheAwkward campaign which raises awareness about how awkward the nation is when it comes to disability. Most recently I contributed to the charity’s A to Z of sex and disability . Research by the charity revealed that the majority (67%) of Brits feel awkward around disabled people, and as a result they panic, or worse, they avoid contact altogether. They also discovered that only 5% of people who aren’t disabled have ever asked out, or been on a date with, a disabled person. I really do hope campaigns like this will encourage people to see the person and not their impairment, and will help everyone feel less awkward around disabled people.

67% of Brits feel awkward around disabled people

It’s frustrating that most people cannot see passed my wheelchair. I have not changed. I am exactly the same person I was before I started using it. I just get tired way more than I did 10 years ago. In my stand-up shows as a comedienne, I try and change people’s perceptions on sex and disability as much as I can. I’m still waiting for someone in the audience to help me try all the positions in the Kama Sutra but can you believe it – I haven’t had any takers yet!

So I’ve now come up with a plan B – masturbation and sex toys. If guys don’t want me anymore what can I do? I still need to have sex. For me having sex is the best thing ever. It makes me feel better and more confident. Two years ago, I bought my first toy; a very basic rabbit. After that, I tried several other toys, until I finally found the right one for me. Believe me, so far I can easily survive without men. Better to be alone than with someone who does not appreciate me for who I am!

Complete Article HERE!