— Why Do You Assume That Means I Don’t Have A Sex Life?
As a woman with mild Cerebral Palsy, writer Jennifer McShane has to think outside the box when it comes to navigating sex and dating. In an essay for Vogue, she reflects on misconceptions, the highs and lows of disabled sex, and why a safe space for conversation is essential.
Desire is a complex thing. It’s a potent, almost indescribable force that propels us forward; that aching yearn to be wanted and loved. Almost every great piece of work ever written, not to mention every Adele song, centres on this. Which is why it remains baffling to me how so many think that, because I am a disabled woman, I don’t have any.
I thought endlessly about this aspect of my life recently, when Billie Eilish told an interviewer, “I have never felt desired… And it’s a big thing in my life that I feel I have never been physically desired by somebody.” My throat constricted as I realised her words encapsulated how I’ve felt almost my entire adult life. As a woman with mild Cerebral Palsy (CP), living in a society rooted in ableism, it’s impossible not to notice how the words “sex and disability” are rarely used in the same sentence. It’s assumed I don’t have a sex life, that I don’t want one, that I surely don’t consider myself a sexual being.
Take the nurse who once scoffed away my mention of a cervical smear. “What would you need one for?” she asked, genuinely mystified. Even well-meaning friends’ responses to my raising the topic have hurt. “I didn’t think you were like that, Jen!” they said, wide-eyed and excited, almost gleeful. It was meant kindly and in fun, but afterwards, part of me was angry. Do I not have the right to the same desires as everyone else? Is it too much to ask to be so fiercely wanted by someone there’s room for nothing else in their brain? To want them back so fiercely it might ruin my life (as I’ve heard it can)?
It’s this base assumption from the majority that I do not – could not – need this that makes it hard for me to express something so important, so vital, so natural, to others. Talking about it doesn’t feel natural to me and so, nothing about my pursuit of desire feels natural either. It always feels slightly forced, timid, like I shouldn’t really be doing it (pun intended). Crucially, I can’t remember anyone telling me, ever, as a disabled woman, that I should make my sexual wellbeing a priority.
In my formative years, there was plenty of love but no safe space for that part. No accessible health setting I felt comfortable in, no articles in teen magazines on sex and disability to offer shaky words of wisdom (Dear Sugar would come along too late), nothing on film or TV I could identify with, no guide that wasn’t cold and only vaguely factual in its attempt to address how I should navigate this already complicated terrain. And in our Irish household, you simply didn’t discuss anything like this. So I shut that part of myself away for a long time.
I never felt I could talk about the awkwardness, the feelings of isolation and loneliness. I felt I was infantilised very early; a woman who couldn’t truly grow up, always on the outside of everyone else’s “normal”. It wasn’t until later that I took my body seriously, determined to at least try to find out what might work and what wouldn’t. Because way back when, my biggest fear was, rather dramatically, in the vein of Monica Geller, that I would die a virgin.
Happily that’s no longer a risk, and there have been good moments. Like when an older man I was casually seeing told me I didn’t have to worry about (in what can be exhausting emotional labour and no one’s idea of fun foreplay) my splints, or the fact it might take me so long to get undressed it’d surely be a mood killer, or to try this way or that, because: “I know what you need.” To my surprise, he was one of the few who really did, and I happily lay there. (Albeit lamenting the fact that – to paraphrase Vogue’s dating columnist Annie Lord – he still wouldn’t see fancy mesh underwear after all his efforts, because I regretfully hadn’t bothered to buy any.)
But those moments are, sadly, not all that frequent. Because mostly, it’s hard, and rather soul destroying when they say they can’t do this, that it’s too weird, that they don’t see a future with a disabled woman because they can’t cope with not having a sex life (an early misconception from more than one).
I’m what’s known as a maladaptive daydreamer. My vivid and near constant daydreams are my coping mechanism, a way to check out of reality when it gets tough. In these daydreams, there’s little rejection and lots of the good stuff, but lately I’ve begun to wonder if this is a subconscious crutch I’m using, one that stops me from really living, from putting myself out there. That it will stop anyone else getting near me. It would help if there truly was a safe space for disabled people to have these conversations. I want podcasts, books, films, disabled sex columns – everything we don’t have now. Because if we don’t see ourselves, how are we to break barriers? It’s 2023. We all deserve love, healthy sex lives, and the chance to have our lives ruined, should we desire it.
“Being unapologetically myself is radical, and an act of self-love.”
By Evan Johnson
You may not expect me, as a disabled person, to be interested in the world of leather and rope.
But, as an advocate for sex positivity, I’m here to tell you disabled people can be asexual or hypersexual, vanilla or kinky — and everything in between.
Disabled people experience the same full spectrum of desire
People are interested in kinks and fetishes — which can be broadly defined as all non-conventional acts of intimacy between consenting adults, often with a sexual connotation but not always — for a variety of reasons.
For me, I’ve found kinks provide a therapeutic effect that I can’t seem to find elsewhere. I feel connected to my body and empowered.
Sexual freedom and empowerment are positive forces for anyone, but especially in those who are desexualised and infantilised — as is so often the case with the disabled community.
As a disabled kinkster, I subvert expectations and embody roles you may not expect from someone like me, which I find powerful.
Being unapologetically myself in my identities as a kinky disabled person is radical, and an act of self-love.
As a more dominant person, I find flipping the script of “the weak disabled person who needs help and saving” to be important.
Being in the dominant position of more mobility and less pain by comparison to a partner is empowering, as I am not in this position in daily life.
And, of course, this goes for submission too. It can be empowering to be experiencing pain and mobility restriction consensually, rather than your “normal ongoing symptoms”.
I like to think of kink as a tool for pain management. If you’re so focused on receiving a different type of pain elsewhere on your body, or giving that to someone else, it’s like your “regular pains” become background noise, as researchers have explored.
Embracing the somatic experiences of letting go, being vulnerable and trusting in your body can feel healing — especially when you don’t feel so connected to your physical body.
Fetishisation of disabled people is a real issue that can be destructive for the disability community – and as with all sex acts, it’s important fetishes are only acted upon with the enthusiastic consent of those involved. (Also, kinks aren’t for everyone. And if they’re not your thing, that’s perfectly fine!)
But, personally, I’ve found kink can also be a whole-body somatic experience. Pleasure does not have to be limited to the genitals. This may be particularly important to those with certain disabilities where sensation and other factors may be altered.
“Ultimately, living with disability doesn’t have to define who you are and what you can be interested in.”
I’ve also found a sense of community through kink, learning firsthand that online or in-person communities can be a great source of information, advice and friendships.
I would not be where I am today — as a proud, disabled, sex positivity advocate — if it weren’t for the amazing people I’ve met in local Adelaide leather and fetish groups.
Communicate thoroughly, and other golden rules
For those curious about exploring the world of kinks, a good starting point is to read or watch content around consent and what you’re interested in, with a focus on safety and harm reduction.
A golden rule is: remember to start gently and communicate thoroughly with all involved.
Living with disability often means we must go about things in different ways — and luckily, there’s a wide variety of aids and toys that can help you engage in what interests you.
From positioning aids like sex swings and wedges, to long-handled toys and hands-free devices, there are infinite ways to ensure that no matter what your ability is, you can still have sex that is meaningful to you.
Ultimately, living with disability doesn’t have to define who you are and what you can be interested in.
Whether kinks interest you or not, I hope your experience of sexuality is empowering and a pleasurable experience for you.
You deserve it — no matter what your abilities are.
The Americans with Disabilities Act (ADA) defines a person with a disability as someone “who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.”
As many as 1 in 4 people in the United States have a disability, the Centers for Disease Control and Prevention (CDC) estimates. The most common type of disability in the U.S. is mobility, affecting as many as 1 in 7 adults. However, disabilities can have a physical or mental component, and given these statistics, it’s likely you or someone you know lives with a disability.
It’s no secret our society has a habit of branding health and wellness issues as matters of personal choice, and some people make healthier choices than others. However, in most cases, there are no “personal choices” a disabled person can make to not be disabled.
Optimal health looks different for everybody. For instance, we could all do the same exercises and eat the same foods, but we’d still have different bodies. Like health, sex and intimacy look different for everybody.
It’s a common misconception that people with disabilities are unable to have fulfilling and satisfying sex lives. But they desire and deserve the same intimate experiences of life that able-bodied individuals enjoy.
“Because of the lack of representation in the media, there is a lot of ableism that still pervades our culture,” explained Megwyn White, a clinical sexologist in New York City and the director of education at Satisfyer, a sexual wellness brand. “Many people assume that all disabled people have limited mobility or lack sexual desire, which is not true. These assumptions can lead to a lack of understanding and empathy toward challenges that disabled people face when it comes to sex.”
There is no singular way to engage in intimacy, despite the limited views we frequently see in the media and pop culture. Let’s look at some of the ways people with disabilities can enjoy intimate activities and how we can encourage cultural shifts to include them in our picture of intimacy.
It all comes down to communication
It’s true for all intimate relationships: Communication and ongoing, enthusiastic consent is the name of the game. People with disabilities may experience sex and intimacy differently than what is considered “normal,” so they may face a more difficult time opening up about their sexual experiences and desires.
“Often, couples who are outside what the ‘standard’ healthy couple looks like have a difficult time opening up about their experiences because they can feel uncomfortable, or perhaps even embarrassed, being outside of ‘the norm,'” White said. “In reality, there isn’t a ‘norm’ when it comes to a healthy and sexually active couple, as this completely varies from all aspects, such as gender, abilities, sexuality, etcetera. The best way to mitigate this internal conflict among couples is to encourage open and honest communication.”
Clarisse Quirit Rella, a product testing and affiliate manager, writer and contributor at Women’s Health Interactive, a nontraditional occupational therapist and a recreational therapist in Queens, New York, agreed that open communication is paramount when exploring intimacy while living with a disability.
“Let your partner know what you can and cannot do, what you like and do not like, what you are curious to try and not try, what is comfortable for you and uncomfortable,” she advised.
Additionally, everyone should take note that sex isn’t solely penis-in-vagina (PIV) penetration. Whatever sexual acts you’re capable of and enjoy “count” as sex, and it’s important society adopts this belief so disabled people, who may not be capable of PIV, can be included in the conversation.
“People can have sex in different ways, many of which may be unfamiliar to us and some ways that people might not even consider when it comes to mainstream ideas of what sexuality is,” Quirit Rella said.
It’s time to get creative
We’ve established that sex can include all kinds of activities outside of what we’ve learned from social conditioning. Since everyone’s not capable of penetrative sex, it’s important to consider other sources of pleasure. Thankfully, various inventions of modern pleasure science have been created with all levels of ability in mind.
“One of the methods that have a track record of working for the disabled community is using sexual wellness products,” White said. “Sexual wellness products radically expand the possibilities of sexual play and can be used to assist in facets of arousal such as blood flow and targeted stimulation. There are so many benefits of trying sexual wellness devices as it creates more opportunity for pleasure, given the various shapes and designs of each product.”
Sex toys are a great option to explore at any level of physical ability and can help people with (and without) disabilities achieve sexual satisfaction. Additionally, the use of other assistive devices, such as pillows, can make some sexual acts more comfortable for people with certain physical limitations.
“I always like to recommend adaptive equipment that can be used to enhance their sex life and sexual pleasure, such as using pillows and wedges, to name a few,” Quirit Rella said. “Pillows can be placed under the legs and stomach area as well as behind the back. These offer stability and comfort to different areas of the body. Wedges also offer support, but with a firmer feel depending on the body positioning.”
She also recommended roleplaying to help couples focus on their personal needs, abilities and strengths, and to create a fun atmosphere for experimentation.
“Roleplaying is also key and can help set the mood for an interabled couple,” Quirit Rella explained. “Use your strengths, abilities and interests to enhance the sexual experience. Create the ambience and always communicate with each other. Redefine what sex means to you and build up that self-esteem, self-worth and confidence.”
Celebrating our differences
Ableism is very prevalent in many aspects of life, which means able-bodied individuals are still often viewed as the “default” body type. We witness this every time we enter a building that has only stairs or a parking lot with one handicapped spot, or we start a new job and find they don’t allow for mental health days.
A lack of understanding and empathy toward disabilities can take an emotional toll, too. Since it’s very likely we all love someone, or are someone, with a disability, it’s important we make a conscious effort to shift our thinking about disability in general.
“It’s very important to consider the emotional challenges that can come along with disability, including issues related with self-esteem, body image or societal stigmas,” White noted. “Creating a space of nonjudgment where it’s OK to express concerns or challenges is vital for sexual health and well-being.”
When thinking about intimacy and disability, it’s crucial that we don’t focus solely on what a disabled person can physically bring to the table. A disabled person’s strength to be vulnerable about their own limitations is worth celebrating in itself. If we shift our thinking to view sex as a pleasurable bonding experience between humans no matter what it looks like, we can better appreciate what humans of all ability levels have to offer.
“People with disabilities have real sexual identities, needs and desires,” Quirit Rella said. “The beautiful part is not focusing solely on the physical aspect of sex, but instead, the intimacy felt during a whole mind-body experience with a partner or with yourself.”
— People living with disabilities are often assumed to be asexual, which can have disastrous effects on their well-being. Humans are inherently sexual and, as such, deserve to have safe and pleasurable sexual experiences and be free to explore their sexuality and gender.
Many people within society view people living with disabilities as asexual, leaving them with little access to sexual and reproductive healthcare and education.
People living with disabilities are sexual beings and are entitled to safe and pleasurable sexual experiences and to explore their sexual and gender identities.
Mobility, fatigue, and pain can affect the sex of someone living with a disability. However, there are multiple toys and positions that can be used to help alleviate some of these issues.
Although limited mobility, pain, and fatigue may affect a person’s sex life, certain toys and positions can aid in pleasure.
How does disability affect sex?
Having a disability can affect sex in several ways, particularly for people with limited mobility, chronic pain, and fatigue. However, this doesn’t mean that those living with a disability cannot enjoy a healthy and pleasurable sex life, as having a physical or cognitive disability doesn’t limit a person’s sexuality.
Humans are inherently sexual and have sexual thoughts, feelings, desires, and fantasies. However, many people within society view people living with disabilities as ‘asexual,’ not wanting to have sex, or not experiencing sexual feelings. This stereotype can affect people living with disabilities in numerous ways, including diminishing self-confidence, desire, ability to find a partner, and ability to view themselves as sexual being. People living with disabilities exist along the same spectrum as nondisabled people, with varied sexual orientations and gender identities.
Those living with mobility issues and chronic pain may have to approach sex a little differently than they’d like to. However, there a sex toys designed specifically to help with this issue for those who’d like to engage in solo sex. For those wanting to engage in sex with a partner, several positions and tools can help alleviate pain and maximize pleasure.
How to maximize pleasure while living with a disability?
Give yourself permission to be sexual
Sadly, research has found that people living with disabilities often internalize the asexuality stereotype, which diminishes their sexual desire and arousal. However, all humans are sexual beings that deserve sexual pleasure. Permitting yourself to be sexual, both solo and with a partner, allows you to reclaim your sexuality and cultivate a pleasurable life.
Allowing yourself to be a sexual being has added benefits, particularly concerning sexual health, as those who are sexually autonomous have been found to make informed decisions about their sexual health, leading to healthier outcomes.
Use toys, tools, and positions that work for you
There are a number of tools, positions, and toys that assist people with limited mobility and chronic pain.
The Bump’n sex toy can be used in several different ways depending on your needs. It’s designed to be a huggable pillow that you can insert a number of sex toys into to hump or grind on, which is great for solo play.
Sex wedges and pillows can also assist with placing your body in a position that is comfortable for you. Depending on your mobility and your partner’s mobility, there are many different positions that you can use to increase pleasure. When exploring new positions with a partner, both partners need to be communicative and express what feels good and what doesn’t. And remember that lube goes a long way in making things feel good.
How does disability affect sexual health?
As many people living with a disability are labeled ‘asexual’ by society, they often do not receive adequate sexual health care from health providers. Those living with a disability need regular pap tests, breast exams, prostate exams, and testicular checks, just like the rest of society.
People living with a disability who engage in sex need to have regular STI checks and have access to education on the importance of contraception.
People living with disabilities should expect to be treated as the whole person by healthcare professionals and expect to receive necessary sexual health care. If your health care needs are not taken seriously, we encourage you to advocate for yourself or access services available in your area to get the care you deserve.
People living with disabilities are not given comprehensive sexual health education
Again, as many people in society see people with disabilities as asexual, sexual education is often overlooked. However, sex and relationship education is just as important for people with disabilities as for those without disabilities. Sex education for disabled people should be given as children, with age-appropriate information. Additional information should also be covered, including:
People living with disabilities can have romantic, meaningful, and pleasurable relationships.
Sexual information that is specific to their individual needs.
Receiving this education allows people to live sexually healthy and pleasurable lives in healthy relationships.
Humans are inherently sexual beings deserving of safe and pleasurable sexual experiences, relationships, and sexual healthcare access, including those with disabilities. If you are living with a disability, you are entitled to be treated and respected as a sexual being. Although limited mobility, pain, and fatigue, may not allow you to have the sex you would like, there are toys, tools, and positions that can aid in pleasurable sexual experiences for solo and partnered play.
In 2018, an N.P.R. investigation sent shock waves through the community of people with intellectual or developmental disabilities, their families and their care providers: according to Department of Justice data, these people are at least seven times as likely to be the victims of sexual abuse as their nondisabled peers. Terrified parents like me have been grappling with this news ever since, unsure of what steps to take to best protect their children.
If they had previously thought about it at all, most parents probably assumed their child’s high school transition-to-adulthood program would address this issue, with sex-ed programs that include, at the very least, the necessary vocabulary for self-protection, like good touch/bad touch. But here’s the shocking reality: Currently, only three states in the country explicitly include special ed students in their sex-ed requirements. Six other states provide optional resources adapted for more accessible sex-ed curriculums. Thirty-six states fail to mention students with special needs at all, meaning the issue is left up to the individual school districts that, more often than not, punt the ball until parents demand it or a crisis arises, e.g., two students are found in a bathroom stall or a nonverbal girl is discovered to be pregnant. Then frantic measures are hastily put in place. Inevitably, the teachers are ill-prepared, the message muddled and the impact unclear, especially when these measures comes far too late for many students.
As the parent of a 25-year-old with autism, it’s not hard for me to see how this issue got lost along the way. Schools are laser-focused on the measurable goals the federal government has prioritized — namely, employment and independent living. Where we live, in a liberal college town that wouldn’t have faced much in the way of moral or religious objection, sex education still wasn’t taught in Ethan’s special-ed classroom until other parents demanded it when he was about 17.
The topic has long been a thorny issue for the federal government, even for the mainstream student population. Since the late 1980s, approximately $2 billion has been allocated for abstinence-only-until-marriage curriculums that countless studies have shown to be ineffective in reducing teen pregnancy. Over the last six years, a handful of bills have made their way through state legislatures mandating more comprehensive sex education that includes information on contraception, S.T.D. prevention, online safety and sexual orientation. While this is undoubtedly a step in the right direction, little — if any — mention is made in these bills when it comes to students with disabilities.
A glance at a radically different approach taken in Britain shows us that it is possible to do better for all our children.
In 2017, Britain enacted a law requiring “relationships and sexuality education” to take place in all secondary schools, with a foundation that starts much earlier. In primary grades, pupils starting at age 6 will get one or two lessons a week on “healthy relationships,” including anti-bullying, friendship-building and empathy. Later on, older students will cover topics including consent, healthy and unhealthy relationships, L.G.B.T. issues, gender stereotyping, harassment and social media safety. The government argues that the earlier curriculum sets up a strong basis for the more complex subjects covered in adolescence.
In Britain, this mandate both includes special-ed students, and also offers a whole gamut of specific recommendations for them: encouraging a “spiral curriculum” where topics are revisited regularly in greater depth; avoiding euphemistic language (like “sleeping together”) that can confuse children with disabilities, especially those on the autistic spectrum; using experiential learning, including field trips to health clinics; and role playing during which students are given a chance to practice saying “No.”
This inclusive approach plays out in countless ways. On the BBC’s educational channel, it’s possible to watch elementary pupils with developmental disabilities pass around an anatomically correct doll as the teacher talks about body parts. For older children, schools may buy books with cartoon illustrations — such as “Things Ellie Likes: A Book About Sexuality and Masturbation for Girls and Young Women With Autism and Related Conditions” and “Things Tom Likes,” with information for boys and young men.
I’m embarrassed to say, when Ethan was growing up, it didn’t occur to us to make these kinds of resources a priority — both for his safety and for the sake of the possible relationships he might one day want to explore. We were too busy fretting about his failed job placements and teaching him how to use an A.T.M. I suspect the same is true for many families navigating the choppy waters of transitioning a child with developmental disabilities into adulthood. You look around for clues to their future, the same way you did when they were a newly diagnosed toddler: What matters most? What should we focus on? You follow the lead of other parents and educators — mostly focused on jobs and cooking skills — and you hope they’re right. And then you hear a story on N.P.R. confirming the reality of a fear you’ve buried for too long and you think: Wait. Why haven’t we talked about this more?
We know our children and their exquisite vulnerability: their willingness to trust, their dependence on others for help. How do you teach a child that the world isn’t all the kindhearted teachers and adults they’ve known all their lives? The answer is clear: We ask those teachers to help us tell them. And we demand that our government gives those teachers the training and tools to do so.
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.
“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.
Everyone enjoys sex—or could, if they had access to the right products and solutions. Most SexTech is designed with able-bodied consumers in mind, which begs the question: What about the disabled market?
We spoke to leaders at three prominent adult product companies to examine the state of SexTech in terms of accessibility and meeting the needs of those with disabilities. Andrew Gurza, Chief Disability Officer at Handi; Dr. Soum Rakshit, Co-Founder and CEO of Mystery Vibe, and AJ Vitaro, President of Zen by Design.
Responses may be slightly edited for clarity or brevity.
SexTech Magazine: In terms of numbers, how big is the market for able-inclusive products? Is there enough potential revenue on the table to attract industry attention? In other words, does servicing this community make financial sense, as opposed to simply being ‘the right thing to do?
Dr Soum Rakshit: My research shows that 15% of people have some sort of physical disability (not including blindness), though many aren’t disabilities we can see. Setting aside numbers though, good designs should work well for everyone. When we designed Crescendo, versatility was our core concept. This involved adding a lock, making buttons flush, and adding a remote or app control for those who might not be able to reach buttons during use.
AJ Vitaro: Paralysis, for example, due to a wide variety of conditions and injuries, effects nearly two percent of the population in The United States alone. However, being in the furniture design business for over twenty years and connecting with thousands of people, it leads us to believe that these numbers are even higher than anticipated. As far as revenue potential for our company in particular, it is not a target market for us, per say; however, we do attract those with disabilities due to the supportive, ergonomic nature of The Tantra Chair ®.
STM: On a scale of 1-10, how has the SexTech industry performed in terms of able-inclusivity?
Andrew Gurza: I would rate the SexTech industry a 3/10 in terms of their inclusivity of the disabled population. That isn’t to say that companies haven’t attempted to address the inclusivity gap, however, we rarely see disabled people in the marketing or creation of the products themselves, and if they are considered, it seems to be an afterthought or a PR stunt versus being integrated into the strategy from the outset.
We are one of the only companies with a Chief Disability Officer and disabled Co-Founder who advises on the lived experience and has been integral to the branding and product design. We hope to be setting a positive example of inclusive design and integration.
STM: Can you take us through the launch of one of your inclusive products?
AJV: When we develop a product, the creative process is arduous, time consuming and extremely detailed. Sometimes it can take us over three years to perfect a design concept, and this was true for The Tantra Chair ®. We work with the dimensions of the human body across a very wide spectrum to come up with designs that nurture the majority of people whether they are struggling with an injury, disability or in perfect health. In our initial years, we were very surprised by the amount of people with injuries or disabilities that were pleased beyond measure because they were able to be comfortable again during intimacy. We continue to hear this often and it is something that we are truly grateful for.
Dr. S.R.: We made the product with inclusivity in mind, but did not include people with disabilities in our user group. This wasn’t planned, and we have since added more diversity to test groups. Our purpose is to design products for everyone, not because you want to tick a box. When people put time into a design, it works for everyone.
STM: Products that are marketed to surmount a specific obstacle can often go mainstream unexpectedly. The Clapper, a device that turns off electric appliances by clapping hands, was invented with customers with mobility issues in mind. Similarly, weighted blankets were products used to calm children with autism and hyperactivity disorder. Now these blankets are immensely popular for an array of consumers.
Still, we wonder if there’s concern in the industry that disability-friendly products will be less desirable to abled people. How might that be mitigated?
AG: Many of the people that we spoke with at Handi as we created our tech were both disabled and non-disabled alike, and they all told us that they wanted a toy that could work for everyone. When you design with disability in mind, you can create a product that is accessible to everyone. At Handi, we also understand that disability will affect everyone at some point in their lives, so we should be creating products with that in mind. It’s like a type of orgasm insurance – even if you don’t need it today, you may very well tomorrow. Not to mention, there’s something very compelling about a hands-free sex toy – which 76% of our able-bodied respondents were interested in.
Dr. S.R. Yes, that’s a perception that can be mitigated with design. Imagine retrofitting something for disability access—a staircase, for example. It’s not going to look as good as a staircase that was designed for access from the beginning. Design is everything. The better the tech is, the less you’ll see it. Adult products push tech forward just as pornography did for internet speed, enhanced picture resolution, accessibility—even the battle between VHS tapes and Betamax was settled by adult content.
AJV: We don’t believe that disability-friendly products will be less desirable to abled people. With our product specifically, it can enhance the life of a person with a disability, an aging couple, or even healthy, adventurous couples.
STM: What should product designers and developers be aware of in order to create more inclusive products?
Dr. S.R.: Things outside our day-to-day life are often invisible to us. So it’s important to keep updating. Pilot groups are vital to us, and we use 1,000 pilot users for each new product. Even if you can’t have a diverse focus group—piloting works.
AG: A big roadblock in the SexTech category is the lack of marginalized people involved in the creation of the final product from ideation to concept to production. SexTech needs to actively include these voices all the way through the process if they want to truly be seen as inclusive. Otherwise it can come off as lip service. Talking the talk, but not walking the walk. One of the biggest needs that isn’t being addressed by the current SexTech, is the prevalence of people with limited dexterity or hand disabilities/limitations. The buttons on so many current products are small and not easy to use. Hundreds of millions of people live with this as a result of disabilities, and 63% of the people we surveyed said that they struggled with self-pleasure due to issues with hand mobility. We need more toys that are easier to use; have bigger buttons and are as hands-free as possible.
The only way to effectively address this is to hire more disabled people to work on the product and concept design. Listen to what they have to say; what are their frustrations with products? What are their frustrations with sexuality as disabled people? By truly listening to these stories, you can uncover a need, and from that, you can create a truly groundbreaking product that will not only change their sex life, but will change their life entirely.
AJV: This is a difficult question to answer, but many disabilities stem from nerve damage due to physical injury, stroke, etc. In most of these circumstances, the spinal column is damaged. We hyper focus on spinal support for everyone, may they have an injury, or not and this inadvertently attracts customers that want to maintain a healthy spinal column to those that are injured and limited in mobility. It makes perfect sense to create designs that will enhance the well-being of everyone.
STM: How should inclusion and representation be marketed? Do you lean toward separate marketing for each demographic, or one clear message for everyone?
Dr. S.R.: We tend to use education rather than marketing, just letting people know what’s available to them. We’re proponents of reverse marketing; simply telling people about a product and inviting them to check it out often yields better results than click funnels and the like.
STM: What do you see as the main challenges to marketing inclusive products?
AJV: We do not market our products (specifically The Tantra Chair ®) as a medical device for a variety of legal reasons. However, people with disabilities are inadvertently drawn to it, because they recognize that it can help them solve a physical problem or at the very least, create a much more comfortable experience for them.
Dr. S.R.: We have never marketed on the basis of inclusiveness. We think that might be divisive. If we make it a marketing point, people may think it’s not genuine. Inclusiveness should be done by default. The only time we talk about the inclusiveness of our products specifically is in award applications.
What we’re seeing is an industry moving forward to inclusivity as a matter of course. The way forward is to create and market SexTech products that can work for any user, and be effectively marketed across multiple demographics. Extending inclusivity into focus groups and test markets will go a long way toward making the very concept of ability-accessible products a thing of the past. That’s bound to improve sex lives—and every other aspect of life.
Francesca Penno, 29 years old, starts the session with Debora. Francesca suffers from SMA (Spinal Muscular Atrophy) a disease that weakens the muscles leaving sensitivity unchanged.
by Studio 1854
Simone Cerio won the ‘Hidden Worlds’ category in last year’s Wellcome Photography Prize for his year-long project documenting the practice of sexual assistance, helping people with disabilities to explore intimacy and sexuality in a therapeutic context.
Six years ago, Simone Cerio came across a newspaper story that made him sit up and pay attention. Referencing an organisation called LoveGiver, the article was about the practice of sexual assistance in Italy, and its controversy in the context of the law. Sexual assistance is “a holistic practice of massage and erotic stimulation”, says Cerio, one designed to help disabled people develop their sexual identity as well as a sense of their bodies both within the context of a relationship and for themselves alone.
“Sexual assistance is confused with prostitution,” the photographer continues. “But the difference is that there is no penetration or oral sex. It’s very different from prostitution, but there isn’t, so far, a clear way to get this practice legalised.” Cerio started to research the subject, contacted the organisation (whose name he adapted as the title of his resulting project, Love Givers) and was subsequently introduced to both practitioners and clients. His work explores, with startling intimacy, a transformative practice that for many people remains unknown.
One of the most striking images from Love Givers was selected as the winner of the ‘Hidden Worlds’ category in 2019’s Wellcome Photography Prize. It depicts two women lying on a bed together, partially dressed, hands intertwined and heads tilted towards one another. They are Francesca, who lives with spinal muscular atrophy, and Debora, Italy’s first sexual assistant, whose services technically remain illegal under Italian law.
Gabriele Piovano, 27 years old, is affected by spina bifida, a disorder that has forced him into a wheelchair since birth. It is commonly believed that disabled people have no sexual needs and their isolation causes them deep psychological problems
Francesca had found that her relationships were undermined by the emotional impact caused by her condition, but in Debora she found someone with whom she could discuss topics such as sex, masturbation and eroticism; “a special rendezvous aimed to strengthen self-esteem and express sexual energy,” as Cerio puts it.
The project also tells the story of Gabriele, a man living with spina bifida; Cerio’s photographs of him initially seem lonely, the portraits pensive and shadowy, until the point in the narrative when Debora arrives. They greet each other warmly, and his expression is transformed into one of enjoyment and sensory abandon. The third chapter of the work focuses on the perspective of a sexual assistant, Nina, a woman living in Switzerland who works as a prostitute but offers her services exclusively to disabled people. In each case, the relationship between the assistant and their client is manifestly tender and respectful, as is Cerio’s photographic approach.
During the session the tact is stimulated by caresses and massages.
From the outset, the photographer was conscious of the stereotypes and stigmas he was pushing against. Society’s ill-informed assumptions about disability can be cruel: “that disabled people can’t have relationships, or sexual relationships,” Cerio notes of some attitudes he encountered during his initial investigations. “That’s why it was important to cover this story: to make a change in society.”
When Love Givers went on to be selected as a winner in 2019’s Wellcome Photography Prize, the story reached a broader Europe-wide audience. The project was the result of a considerable period of diligent research, and time spent getting to know his subjects. “I covered this story for a year, and so step by step I created relationships. I decided to go back two, three or four times for each story.” Initially, Cerio was shooting video to accompany the work, short interviews with each subject, but he soon decided that photography’s more indirect approach was better suited to cover the story with the delicacy that he intended for it.
“I was very lucky with this project, because the people that I photographed were always open to tell their story,” the photographer says. He was particularly touched by the welcome he received from Gabriele and Francesca’s families, who were supportive of the work from the outset. It had been difficult for these able-bodied parents to understand their children’s experience of their bodies, especially during adolescence, and so organisations like LoveGiver have been able to provide the kind of embodied education the parents were unable to. Hence their openness in telling the story, in the hope it may help others.
Francesca Penno’s mother while helping the daughter to get ready for the session. The role of the parents is very important as they are the first to be aware of the needs of their daughter/son. Parents are often forced to turn to prostitutes as the the sexual assistant job is not yet recognized.
Cerio was also especially mindful about avoiding voyeurism while depicting such intimate subject matter. “My priority is always to create trust,” he says. “I tried to focus on the emotional aspect, and not be too explicit.” The result is a body of work that — though it deals with sexuality and approaches a subject matter that many viewers will never have come across — is sensitive and measured, emphasising the inner lives of his subjects rather than the facts of their bodies.
Gabriele, Francesca and Nina were all pleased with the outcome of the work. “They’re enthusiastic, especially because they really appreciated the approach I used to tell their stories, and the intimate way I took the pictures,” Cerio says. Love Givers has received plenty of positive feedback from an audience curious to learn more about the practice, as well as from people who may be able to benefit from sexual assistance directly. Parents of disabled adults have called the photographer to ask for more information, hoping to help their own children by introducing them to this particular therapeutic context.
A moment at the end of the session
Following this reception, Cerio intends to continue the project, as its ramifications reach further than he had anticipated. “Other people connected with the topic still contact me wanting to tell their story,” he says. “A few days ago someone called me wanting to tell the story of his relationship with his girlfriend, who is disabled.” The photographer will continue with his patient, deliberate approach, taking time over each subject, and would eventually like to bring the stories together in a book. He is still in touch with his previous subjects, and the positive effects of the sexual assistance they have received are resoundingly clear. Francesca, for example, is now in a relationship, and is expecting a baby.
Young people with learning disabilities are being denied sex-positive relationships and sex education due to societal stigma, with 36% of professionals saying that sex education is not prioritised in their school
This Sexual Health Week, young people’s sexual health and wellbeing charity, Brook, is working with the learning disability charity, Mencap, to shout louder about the needs of young people with disabilities and support professionals delivering relationships and sex education (RSE).
The charity surveyed the professionals delivering RSE to young people with disabilities. Of those surveyed, 80% said they struggled to find accessible resources that meet the needs of young people with learning disabilities. A further 80% said it is difficult to find images that reflect the sexual experiences of young people with learning disabilities.
Despite RSE becoming mandatory in 2020, inclusivity remains a taboo subject. 54% of those delivering RSE said they cannot access training to help with sex education, while 36% say that sex education is not a priority in their school.
Richard Lawrence, Project Support Assistant and Co-Chair of the Sexuality and Relationship Steering Group at Mencap, said: “Some people are quick to judge people with a learning disability, like me, when it comes to sex and relationships. People with a learning disability have a right to choose if they would like to be in a relationship, have sex or get married.
“People have judged me for wanting to be in a relationship and have told me that because I have a learning disability, I don’t understand what a healthy relationship, consent or safe sex is.”
Helen Marshall, Chief Executive at Brook, said: “The reality is that lots of sexual health messages received by young people who have a learning disability are negative and focus primarily on risks and inappropriate behaviours.
“These are important aspects, but there needs to be a balance. If RSE is accessible, positive and inclusive, it can empower young people to become more independent, explore and develop healthy relationships and help to protect against abuse.”
Brook is using Sexual Health Week 2019 as an opportunity to start important conversations about sex and disability, challenging misconceptions and providing support to professionals delivering RSE.
The charity have created a hub of free, downloadable resources on a range of topics including; masturbation, same-sex relationships and pornography. Each topic is supported with further resources for young people to take away and continue reinforcing their learning.
Sex, relationships and disability
People with learning disabilities face multiple barriers when developing intimate or sexual relationships – including a lack of adequate RSE. Without this education, young people are being denied the skills and knowledge they need to not only have healthy, fulfilling relationships, but to understand and explore their own sexuality.
Teachers and those delivering RSE also face barriers when supporting young people with disabilities. As revealed in a previous survey by the Sex Education Forum, only 29% said they had received training in sex education, and a staggering 99% wanted practical advice on meeting the needs of pupils with special educational needs and disability (SEND).
“Back when I was in school, I only got taught the basics, like here is a man and here is a woman. I didn’t learn anything about consent, safe sex or LGBT,” said Lawrence. “It’s a lot harder for people with a learning disability to find out about sex and relationships because accessible information is hidden away.
“That’s why Mencap is proud to be collaborating with Brook to make a positive difference to the next generation of people with a learning disability.”
If you have a learning disability, or know someone who does, Mencap offers information and support about sexuality and relationships. Enhance The UK is a charity run by disabled people, working to change the way people view disability and for disabled people to be active and equal members of society.
Alongside their #UndressingDisability campaign, they have produced a number of resources and Q&As to ensure disabled people have access to the same support as their peers.
Brook and Mencap want to use this Sexual Health Week and beyond to normalise the conversations around sex and disability, and support RSE professionals to better equip the young people they work with.
Sex and disability needs to be talked about more. For support, information and resources, visit Brook, Mencap and Enhance the UK.
Disabled Australians should be able to access sex toys, dating support and sex workers under the National Disability Insurance Scheme if they require them to live a normal life, a coalition of disability advocates says.
Four of Australia’s major disability groups argue the NDIS needs a “sexuality policy” to cover a broad range of needs such as adaptive sex toys, services from sex workers and sex therapists – as well as education about sexuality and relationships.
But the National Disability Insurance Agency, which administers the NDIS, says the scheme does not cover sexual services or therapies as part of its assistance to disabled Australians.
The agency recently launched an appeal against a tribunal decision that granted a severely disabled women access to a sex therapist under her NDIS plan.
People with Disability Australia spokesperson Matthew Bowden said it was a “human need” for people to be able to express their sexuality and have fulfilling sexual experiences, urging the government to show a “compassionate approach to a private and sensitive issue”.
In a new position statement, Disabled People’s Organisations Australia says disabled people date, have casual partners, marry and enjoy loving relationships like others in the community.
“Historically, people with disability have been subjected to societal beliefs that we are either asexual or hypersexual, while constantly being denied full autonomy over our own bodies,” says the alliance, which include organisations that represent women, Indigenous and multicultural Australians.
“While accessing services of a sex worker may not be for everyone, this option should not be denied or dismissed on the basis of disability, or the moral beliefs of third parties.”
Disability advocates stress that access to sexuality supports – particularly sex workers – would be considered on a case-by-case basis, and involve significant disability. For example, this might include someone with severe cerebral palsy who could not reach their own genitals.
Saul Ibister, president of Touching Base, an organisation that has been helping disabled people access sex workers for 20 years, said sexual expression was part of an ordinary life.
“The community does not expect people with disability to live the life of a nun,” he said.
In July, the Administrative Appeals Tribunal found the provision of a sex therapist was a “reasonable and necessary” support under the NDIS for a woman with multiple sclerosis.
The woman is in her 40s and was diagnosed with MS about 16 years ago. She finds it difficult to walk but has no loss of intellectual capacity.
The NDIA originally refused the woman’s request for “sexual release” but the AAT found in her favour. The government almost immediately announced it would challenge that decision, and an appeal has been lodged with the Federal Court.
Sex therapists do not touch clients but focus on issues such as how to adapt sexual activity to a disability.
An NDIA spokesperson said: “The NDIS does not cover sexual services, sexual therapy or sex workers in a participant’s NDIS plan.
“The NDIS can fund supports to enable [people] to participate in the activities they choose; however, the NDIS does not fund the private activity itself and does not generally fund the cost of private activities.”
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.
This month marks the 50th anniversary of the 1969 Stonewall Inn riots. Since then, June has been recognized as Pride Month, dedicated to celebrating the resilience, perseverance and unity of the LGBTQ community.
During a time when diversity and inclusion are the main pillars of Pride, people with disabilities are still left out in the discussion and celebration of sexual and gender diversity. Just last year, the historic Stonewall Inn bar denied entrance to a blind queer person because they didn’t provide paperwork for their service dog — a violation of the Americans with Disabilities Act, which states no paperwork is needed for the entrance of a service animal.
That is only one of many examples of how Pride remains mostly inaccessible to the disabled, deaf or hard-of-hearing, blind and people with intellectual and/or developmental disabilities. Accessibility issues are present in gay bars, parties, big parades, as well as protests and rallies.
The physical spaces of many of these events present obstacles for people with physical disabilities or with sensory sensitivities. For example, parades can often be difficult for people with mobility issues because of uneven, long routes, extreme heat and tight, narrow spaces. Even if there is a designated wheelchair path, often times the parade coordinators underestimate the amount of space needed, or the path becomes overcrowded.
Even intimate gatherings often lack disability accommodations. Events with speakers, more often than not, do not have accompanying ASL interpretation, film screenings do not have closed captioning and spaces do not account for participants with noise or light sensitivity or who are on the autism spectrum.
However, these physical barriers and obstacles have a more significant implication. People with disabilities have been viewed as asexual beings, or incapable of having other identities other than being disabled. The mainstream population too often feels squeamish about someone who might need help in the bathroom, also having a fulfilling sex life.
Activist points out that Pride is too often inaccessible.
The Atlantic recently released a short documentary following the hurdles a married couple had to face when trying to convince a group home to allow them to live together. They both have intellectual disabilities, but that doesn’t mean that they are incapable of understanding their sexuality or of being in a marital relationship. The couple had to legally prove that they can consent to their sexual relationship, and thereby earning their right to live together. The mere fact that the couple had to go through this process speaks volumes on the social and cultural perception on the sexuality of people with disabilities.
The fundamental meaning behind Pride is for everyone to be proud of their bodies, sexuality and physical appearances. However, the same invitation is too often denied to LGBTQ folks with disabilities. Instead, they are reminded that they don’t belong in such spaces and that they can’t have sexual or gender identities. They want the exact same things that non-disabled LGBTQ people want in life: acceptance and not being “othered.”
People have multiple facets of their identities — a concept that is often referred to as intersectionality in academic and research settings. To ignore, or not account for, one aspect of a person’s identify — say, their disability — penetrates the notions of exclusion and discrimination. In turn, this can eradicate the histories of members of the LGBTQ community with disabilities.
Disability accommodations and inclusivity should not be an afterthought, but rather a priority when planning LGBTQ events and celebrations. Pride should strive to honor and recognize the lives of all people who identify as LGBTQ, and that certainly includes people with disabilities.
“As long as trans disabled people like me exist, disability issues are trans issues, and trans issues are disability issues,” Dominick Evans told them. Evans is trans, queer and disabled filmmaker and advocate.
A simple matter of budget ended up making one of the most revolutionary queer stories on television. Ryan O’Connell, Will & Grace writer and author of the memoir I’m Special: And Other Lies We Tell Ourselves, was not attached to star in the show he’d write and create when he first pitched it. But O’Connell, who is gay and living with cerebral palsy, ended up being the cheapest option to star in the show and, thus, Special, which just dropped on Netflix, was born: a show created, written by, and starring a queer person living with a disability based on his own life story.
Disability representation is still pretty abysmal on television. According to GLAAD, though over 13% of Americans are living with a disability, only 2.1% of characters on primetime broadcast shows live with a disability — 18 characters in all. That’s actually the highest percentage GLAAD has recorded in its nine years of tracking, which hopefully points to an upward trend. But there’s still so far to go, and Special not only a pushes the meter in the right direction, it also addresses how queerness intersects..
It’s a point that people like deaf activist and model Nyle DiMarco has made again and again: there is not enough disabled representation when it comes to everything from children’s shows to the Marvel Cinematic Universe. In October, DiMarco posted an ad from the CW on his Twitter that touted the network’s commitment to racial, sexual, gender, and ethnic diversity but, as DiMarco pointed out, made no mention of disability representation.
Special doesn’t only put queer people on screen, it centers their interior lives and deals with a host of thorny, complicated issues — all while eliciting big laughs. In the show, O’Connell plays Ryan Kayes, a 20-something gay guy living with cerebral palsy who gets a job working at a millennial-centered site called EggWoke. (O’Connell himself used to write for Thought Catalog, so take from that what you will.)
In only eight, 15-minute episodes, a first for Netflix, the show tackles internalized ableism, queer disabled sexuality, sex work, gay monogamy, the exploitation of marginalized stories, Instagays, and more. Out caught up with O’Connell ahead of the show’s debut to discuss the disability spectrum, why pool party scenes feel so universal, and whether he feels pressure to represent the entire disabled community in one show.
Spoiler alert: Several plot points of Netflix’s Special are discussed in this interview.
Very early in the series, you have a scene talking to your trainer about being on Grindr. Did you feel like you waited a longer time to go on apps than other gay men?
I definitely looked at the apps. I have had a boyfriend for four years and I’m still on the apps, honey, hello, welcome to the future. But back in my single days, I remember I was on Grindr and I was on Scruff, but I would rarely meet up with someone because I just had anxiety. Are they going to notice I have a limp? Am I doing false advertising? It was a tricky thing to navigate. Because I felt like my disability wasn’t pronounced enough to make a difference. I felt like warning them about a limp was overkill, but I didn’t want anyone to feel like they had been duped. I was on the apps, but it would take a bottle of wine for me to invite someone over.
I really loved a conversation that your character has on the show about being disabled, but not being “very disabled,” like, let’s say, someone who operates with a wheelchair. Obviously, your show is a major step forward for disability representation on TV, but do you feel pressure for the show to represent a large swath of the disabled community?
It’s a lot of pressure because there has not been that much representation of disability, let alone form actual disabled people. I do know intellectually that it’s truly impossible for my show to speak for an entire population of people. It just can’t happen. So I feel like I have to write something that’s authentic to my experiences. And I feel like as you get more specificity, you get more universal. Hopefully Special opens the door for more disabled voices to tell their stories. I can’t speak for an entire population of people.
I don’t know if you’ve watched Shrill on Hulu yet, but just like Special, there’s a pool scene where the main character is confronted with their own body. What do you think it is about a pool setting that can be so emotionally fraught?
Well, I think the setting of the pool party is very relatable. I feel like everyone at some point in their lives has been invited to a pool party and has felt anxiety over taking off their clothes in front of a group of strangers, or even friends. I’ve spent a lot of my life feeling very self conscious about my body, not feeling good enough. All of the feelings Ryan [has] in the pool party episode are things that you relate to. I don’t know if i’ve ever been invited to a gay pool party, [but the idea is] so deeply triggering. I think I’d feel self conscious, especially one full of Instagays because they have these conventional, beautiful bodies and that’s definitely not mine. You can’t help but compare yourself. “Compare and despair,” that’s what they say. It’s hard. The relationship to the body is always evolving. It really depends on the day. Some days I’m like, :I love my body! I’m body positive!” And other days I’m like, “I’m literally a goblin.”
Watching your show coincided with me watching Shrill and then there was also an episode on Comedy Central’s The Other Two about Instagays. It seems like Instagays are having their cultural send-up moment.
Totally. There’s just a lot to mine there. Let’s be honest. It’s just a very very funny subculture of people. I don’t know any Instagays personally. I don’t know what they do for a living. God bless, but yeah, The Other Two is so brilliant. I love that show. It’s so smart and so funny.
Your character also deals with a season-long arc of internalized ableism and keeps his disability a secret. You lived that experience, then wrote about it in your memoir and now for your show. What is it like to live that experience but then translate it to the screen and have to access those feelings again?
I really enjoyed it actually. Because I think when I wrote the book, I was so unevolved in my feelings about my disability and the fact that I had been closeted about it for the past six years. While it was cathartic to write about it in my book, I felt I had only scratched the surface and had only begun to understand what I had done to myself. Talking about it in the show was an amazing opportunity because I’ve learned so much about myself and when I was closeted and how it fucked me up on such a deep level.
I didn’t even know about internalized ableism when I wrote the book. And if I knew what it was, I wouldn’t even know that I suffered from it. I was beginning to unpack what being closeted about disability had done to me, I was just not there yet. So doing it in the show was just amazing because I feel like I have grown so much and I understand things much better than I did back then.
In the show, your character goes on a date with another disabled person and you kinda exit stage right. Did you ever find that ableism had stopped you from dating other disabled people?
Yeah, that actually happened to me in high school. There was this really cute deaf gay guy in my high school and he asked me out on Myspace or something. I remember being so grossed out like, “Who does he think he is that he can ask me out on a date and I’d say yes?” Meanwhile, I’m drooling on myself and limping away like “How dare you!?” Like, “I date able-bodied people only please!”
I thought I was justified in feeling that way. I had no idea how fucked up I was in feeling that way. I think it’s so fascinating and specific to the disabled community. But I think it’s specific outside of the disabled community in a larger way with gay men. Sometimes you have internalized homophobia and sometimes someone reminds you of the things you don’t like about yourself and it causes you to reject them.
There’s a conversation in Hollywood right now about people from marginalized communities being able to play themselves on screen. Was it always the plan for you that you would star in Special?
No, never. There was no discussion. When we first went out to the pitch, I was not attached to star. There was no one attached to star. We would talk about “Who do we get to play me?” and initially we went out with the pitch and we went to Stage 13, a digital branch within Warner Bros., but out of financial necessity, it was like, “We have no money, Ryan is very cheap, so welcome to Hollywood, honey!” So I was forced to play myself.
I was so scared of it. I never wanted to act, but now having done it, I’m so glad and I can’t imagine anyone else doing it. Looking back on it, I like performing. I was in high school plays and middle school, but I feel like I never gave myself to really want that. I was ashamed about it, like “I’m just a writer, I’m behind the scenes in Studio City in a writer’s room and that’s my journey.” Now, I feel like I do like to perform and I do like to act and that’s OK.
I really loved the plotline where your character has a positive experience with a sex worker. How important was it to show that kind of interaction, between a person living with a disability and someone who does sex work?
Well, that scene was really really important to me. That sex scene was my baby. I have been really frustrated about the lack of representation of gay sex in film and TV. I don’t understand why anal sex has not been normalized or depicted for what it is. You get Queer as Folk, really porny, or you don’t get anything at all. So I knew when I was starting the season that I wanted to have an honest sex scene and I also had an experience with a sex worker that has been so amazing and I wanted to create a scene that was also pro-sex work.
I also wanted to make sure that Ryan losing his virginity was a nice, tender scene and that I was not traumatized. I felt that that was very important. When something is so common in your life and you don’t see it every in TV or film, I get really frustrated. I’m like, “Why is this so groundbreaking? This is something that tons of people experience!”
And the scene also actually featured lube, which gay sex scenes never feature lube!
Yeah, I think that was actually the addition of my gay producer. I think that was my producer being like, “He should definitely have lube!” Lube is obviously a very essential part of gay sex. Can’t leave home without it!
So, I’ve worked in digital media for a while and I see a lot of the same culture at EggWoke [the fictional site where Ryan works in Special] that I’ve seen in a lot of digital media. They want you to harvest your deepest, darkest parts of yourself for clicks. What advice would you give writers who are living with a disability or marginalized in any way who might be pressured to tell their stories when they’re not ready?
My advice is don’t do it. I know that when I started writing for the internet, I was in such a hungry, desperate place, that I was like, “I’ll write about anything! I have no boundaries! I need a career.” And then over time, like six months, I realized that that was not a place to be, emotionally prostituting yourself for two dollars. You have to really create boundaries and realize what you’re comfortable with. If you’re not ready, you have to say you’re not ready to talk about this. Do something else: sell your sperm, do foot fetish work. That has more integrity than exploiting yourself.
You also try to show the awkwardness that can happen when a disabled person and a non-disabled person try to have sex. What advice would give you non-disabled people who want to talk to someone with a disability on apps?
I don’t know if I’ve ever been in that position. I’m trying to think. I didn’t really date. I need to say that a million times. I was single for many, many years and I think it was because of scenarios like you just said. I was so fearful of talking about my disability. So, what I will say is through my coming out of the disability closet — usually no one cares about the things you care about as much as you do. When it comes to getting laid, in my experience, once you’re there, no one gives a shit. It’s just like, “Let’s do it!” So be comfortable and confident and if for whatever reason the person is not receptive, if anyone has some sort on unsavory reaction to your disability then say, “Goodbye and good luck with your fucking projects!”
The internet has changed how kids learn about sex, but sex ed in the classroom still sucks. In Sex Ed 2.0, Mashable explores the state of sex ed and imagines a future where digital innovations are used to teach consent, sex positivity, respect, and responsibility.
Sex ed in the U.S. is often a hot mess. Teens regularly get medically inaccurate information, learn solely about abstinence, and hear only bad things about LGBTQ identity and sexuality.
Young people with disabilities can feel particularly invisible in classroom sex ed lessons, since the content typically doesn’t reflect their experience. Meanwhile, some teens may assume their peers with disabilities have no interest in sex or sexuality at all.
This new video from AMAZE, a YouTube sex ed series for adolescents and teens, takes on and then shatters the stereotypes and misconceptions about disability and sexuality.
The clip features a young character who uses a wheelchair and the pronouns they/them. They share with an inquisitive friend that yes, they are interested in dating, and yes, their “parts work just fine.” (It’s important to note that while the direct questions help start an educational dialogue in the video, young people shouldn’t similarly quiz their friends with disabilities.)
The candid conversation covers gender identity, sexual orientation, healthy relationships, and the specific challenges people with disabilities can face while trying to date. In just three short minutes, the video scores wins for representation, inclusion, and education.
‘Can you even have sex, Sam? Can you have children?’
By Samantha Renke
Sex. We all know what it is — and when most of us think of it we think of pleasure, love, passion and mostly a darn good time.
However for some, sex can have a huge impact on their entire lives, affecting their wellbeing, confidence, self worth and sense of belonging.
Early last week I joined a panel of experts and influencers for BBC 5 Live’s #SexTakeover, the UK’s largest sex discussion.
I came away with the strangely reassuring knowledge that all of us — no matter who we are — have had a complex relationship with sex at one time or another. We all have hangups and awkward sexual encounters but for me, as a disabled woman, the takeover highlighted how society is grossly failing disabled people in all areas of sex and sexual wellbeing.
So what happens when no one will discuss sex with you, when medical professionals are letting you down when it comes to your sexual health, or when those around you see you more as a child than a sexual being?
I have a rare genetic disorder known as osteogenesis impefecta (brittle bone disease), I am just shy of four feet tall and a full-time wheelchair user. I knew very early on that I was ‘different’, and that my life experiences differed somewhat from my peers.
I spent most of my adolescence not knowing if I could even physically have sex or if my body would grow like everyone else’s. At one point I convinced myself that I’d never experience puberty, get my period or have sexual relationships because of my condition.
Intrusive questions asked by those around me, as well as the weird fascination that society seems to have around sex and disabled people, added fuel to my already confusing relationship with sex.
I even became the joke in a dare where a group of guys egged each other on to come up to me in a night club.
‘Can you even have sex, Sam? Can you have children? Can you kiss a boy or would you break your jaw? Can you have a boyfriend?’
It seems to be common practice to perceive people with disabilities as objects rather than complete people.
This leads to the view that they are less human and do not desire, need nor want the same things as everyone else. Even now, I get comments on online forums asking if I can have sex, or people commenting that they find me ‘brave’ for being on dating sites.
These experiences aren’t isolated, as many of my close friends have shared similar stories, like comedian Lila Hart. Like Lila, I too experienced people’s embarrassment about having relations with me, and even became the joke in a dare where a group of guys egged each other on to come up to me in a night club.
The stereotypes and misinformation surrounding sex and disabled people goes beyond whether or not we get asked out on a date. It can also impact on whether or not we have proper access to sexual health as Athena Stevens — a playwright and human rights activist who lives with cerebral palsy — found out when she went for a routine pap test.
Athena’s involuntary movements during a standard smear test meant that the doctor eventually gave up. But rather than discuss what they could offer her going forward, they told her in the most cold and insensitive way that ‘lightning doesn’t strike the same place twice’ and that they ‘did not think sex will ever be possible’ for her.
One mother confided in me that she is terrified about discussing sex with her daughter, who has spina bifida. Upon asking her endocrinologist how to discuss periods with her daughter, the doctor replied that she didn’t really know, and that her medical advice was to talk to other parents and see how they managed. The only advice offered by her specialist was for her daughter to wear nappies.
There is a substantial breakdown of communication between medical professionals, parents, care givers and educators when we look at sex and disabilities.
No one actually seems to be taking the time to ask what the person with a disability wants or needs. We can feel awkward and jump around the subject all we want, but the fact remains that no matter what your disability looks like, we are all still sexual beings.
The real danger comes when awkwardness and ignorance causes people with disabilities to not only miss out on meaningful intimate relationships, but in many cases our wellbeing is also put at tremendous risk when we aren’t able to access sexual health treatments or contraception.
I’d like to see better education across the board when it comes to disability and sex. Not talking about it can lead to somebody feeling like a lesser person, feeling less desirable and ultimately dehumanised.
Parents need to have access to a better understanding of sex and disability, so that they don’t feel like they are failing their children and their children, in turn, can then feel comfortable to express their sexual needs.
We also need to see the media better embrace disabled people as sexual beings — where are our disabled lingerie models or steamy sex scenes with disabled actors?
Sex may be an awkward subject to broach for many of us, but not talking about it can be so damaging. Especially for disabled people.
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