We live in an inaccessible world.
In order to do some firsthand research on accessibility and sex, I attended the touring taboo show when it passed through Calgary in November 2022. The Everything to do with Sex Show is an event that is – as billed – focused on sex, and apparently everything there is to do with it. It has vendors, performances, seminars, a live BDSM (bondage/discipline, domination/submission, sadism/masochism) dungeon, and more.
I toured through row upon row of booths searching for brands or companies that might carry any specialized sex toys that — would be accessible — for people with disabilities. Asking the sales staff, “What do you have for accessible sex toys?” was usually a question met with a few ums and ahs, and then a panicky offer to get the manager who might know more. Then, once talking to the manager, they would try and sell me on how some run-of-the-mill sex toy could be accessible, even though it was not designed by or for people with disabilities.
Whether the booths I visited carried no disability-friendly products, or they just weren’t educating their employees on accessibility, the problem is clear: society treats sexuality and disability as though they cannot coexist. If we’re so uncomfortable with sex and disability, why are we so comfortable with exclusion?
Mainstream exclusion of sex and disabilities
People with disabilities make up the largest minority group on earth. That means that over 1.3 billion people, or 16 per cent of the world’s population, identify as having one or more disabilities.
Yet people with disabilities still don’t often see themselves, let alone their sexuality, represented in popular culture. Mainstream media fail to represent disability, and it results in exclusion from health care, sexual education, and even just conversations about pleasure and the right to feeling sexy. As it is in so many other areas of accessibility, sexuality is almost entirely overlooked.
Gabriella Carafa is a social worker and psychotherapist. Before managing her own private practice in Toronto, Carafa’s career was as a social worker in rehabilitative care supporting youths with disabilities, specifically in their transitions to adult services within a hospital setting.
There comes an age when young people start to become more curious about sex viewing it as cool and interesting, which makes sense. But Carafa explains that people with disabilities may experience learning about sexuality very differently.
“I soon realized that it wasn’t just the young adults who needed support in this area,” she says. “Their families and caregivers also needed that support because of how much stigma is around disability and sexuality.”
While this support looks different for everyone, there is one very important common theme that Carafa emphasizes as universally important for young people with disabilities and their sexuality: relationships. “You can know yourself, and know that your identity and your value as a person does not rest on somebody else finding you attractive and wanting to be with you and have sex with you.”
Carafa’s extensive educational and professional background is also backed up by personal experiences. Carafa identifies as someone with a disability and uses a power wheelchair for mobility. She has had a disability all her life, and is well-versed in the discrimination that can come with that, which is another reason why relationship education from the get-go is a must.
“There’s a narrative going around in the disability community around this topic,” says Carafa. “If you find a partner without a disability, you made it.”
There’s also a flipside to this narrative. Carafa explains that the double-edged sword of dating and disability can be met with so much negativity and unwarranted opinions that it feels like a lose-lose situation. If both parties have disabilities, “that relationship isn’t valuable or worthwhile.”
Carafa notes that one of the biggest detriments to disability representation is mainstream media, as it severely lacks representation surrounding all explorations of disabled life.
Media is like a mirror — a reflection of society. In the digital age especially, it shows us ourselves, and inherently acts as a reflection of our values, beliefs and even beauty standards. And so, of course it plays an important role in disability representation.
Carafa says censorship on giant social platforms is also a problem. “Disabled bodies being censored on Instagram, and pictures being taken down because they’re in a bikini. It’s like, ‘Oh my goodness, they have scoliosis, take that photo down!’ versus another person in a bikini whose picture is not being removed from Facebook or Instagram. [Actions] like that really show that disabled bodies are not part of the mainstream.”
Has society become so obsessed with seeing photoshopped Instagram models who have undergone potentially deadly butt lifts that now a real person’s body is no longer palatable?
Carafa feels that the majority of people lean towards thinking, “Oh, we don’t want to see that, it’s just too much,’ or “Oh, disabled people talking about sex? That’s just too much.” Rather, says Carafa, “We need more of that. We need different kinds of experiences to reflect different identities.”
Mainstream media needs more representations of disability, especially in sex, love, and intimacy. And social media isn’t the only place we’re not seeing disability being represented. Some believe that the asexualization of disability starts earlier, in a more foundational way.
Sexual health and education play a vital role
Sexual health and relationship education for young people lacks a vital focus on disability, which Carafa explains can be linked back to segregation in schools.
“[They were] mixing sexual health education with phys ed, which a lot of people with disabilities were getting exempted from.”
The World Health Organization (WHO) explains that sexual health is fundamental to the overall social and economic development of the world. Further, the United Nations Educational Scientific and Cultural Organization (UNESCO) published an international technical guidance report in 2018 about the importance of comprehensive sexual education, advocating for the promotion of health and well-being, respect for human rights and empowering young people to lead safe and healthy lives.
With comprehensive sex ed programs implemented by large-scale organizations like WHO and the UN, whose efforts are recognized on a global scale, it’s hard to imagine that sexual education is lacking in a country like Canada. One researcher, however, says the system is letting kids with disabilities down.
Shaniff Esmail, chair of the occupational therapy department at the University of Alberta, has studied sexuality and disability his whole career. Esmail’s research has largely been centred around the impact of disability on couples, as well as sexuality and disability education for young people.
“A lot of people don’t see these individuals as sexual because generally society has a real discomfort when they see somebody with a disability. Right away, there’s a discomfort in themselves.”
Traditional dominant heteronormative ideologies towards sex are notoriously exclusive, and the idea that sex can only be one thing is, undoubtedly, a deeply flawed belief system totally plaguing the planet.
Esmail’s findings have discovered some uncomfortable truths about sexuality and disability. In a 2009 research article published in Disability and Rehabilitation, Esmail discovered that the “restricted viewpoint of sexuality has led to misinformation, misconceptions and prejudice both towards, as well as for individuals living with a disability.”
The researcher and professor explains that people could even be missing out on potential connections, as some “won’t see themselves being in a relationship with somebody with a disability.”
“Once you get to know the person, you look beyond the disability,” he says. “A lot of people still [just] see the disability. Instead of, ‘That’s Joanne, she has a spinal cord injury,’ it’s, ‘That’s the person with the spinal cord injury, her name is Joanne.’ They see the disability first, and we need to change that.”
Unfortunately, discrimination is everywhere. Even in access to healthcare, attitudes of medical professionals towards disability and sexual health are not immune to discrimination. Consider the common pap test.
A Papanicolaou test, often called a “pap smear” or “pap test,” is a diagnostic procedure done to screen the cervix and detect early signs of cervical cancer.
There are different guidelines across Canada for when pap testing should occur, but most agree that it should start at a certain age or within three years of first sexual contact, whichever comes first.
I spoke with someone (that will remain anonymous to protect the privacy of the people involved) who worked with a woman with a disability. The woman was advised to get a pap test for the very first time. She did her research, then consulted my source about the test. When she went to get her pap smear, she was denied. The woman was told by the healthcare professional conducting the pap test that it “didn’t apply” to her because she “wasn’t sexually active.”
Pap smears are recommended for vagina-owners every three years after turning 21, whether someone has had sexual contact or not.
“That happens a lot for people with disabilities, where they maybe don’t have somebody else who can help advocate for them and for their bodily autonomy,” my source says. “They’re left not having a lot of procedures done just because society dictates that they won’t understand.”
Society has long projected this throughout the pedagogy of sexual health. In a 2021 literature review that examined over 5,500 research articles on talking to young people about sexuality, youth with disabilities were “vastly under-represented,” highlighting a complicated relationship with sexual education internationally.
“There are some really good national guidelines for sexual health education,” says Esmail. “But then, sex education is [also] a local or provincial mandate, so provinces can decide how they do sexual health education… they can decide whether it’s important or not.”
Esmail further explains that this provincial level then trickles down to the curriculum guidelines of schools, then how teachers plan their lessons, then all the way down to the individual student level, where parents can opt-out of sexual education on behalf of their kids. Sex education for many Canadian school children becomes contingent upon an endless list of variables, making it hard to regulate and harder to access.
As it stands, there is no mandated sexual health education curriculum in Alberta. Fortunately, one non-profit organization in Calgary has been providing sex ed programs since 1975 to combat the vast landscape of unregulated information. The Centre for Sexuality is a resource that offers relationship and sexual health education programs in partnerships with schools and community-based organizations across the city for youth ages 12 to 29. As part of their mission statement, the Centre for Sexuality emphasizes giving youth the opportunity to build their knowledge, skills and motivation to make informed, healthy choices about their bodies, relationships, and sexuality.
Benjamin Bruce, project coordinator and facilitator for people with developmental disabilities at the Centre for Sexuality, explains how convoluted the administration of sex ed can be in school systems.
“Teachers can create and teach sexual health lessons however they see fit, as long as they reach the Alberta learning curriculum outcomes. What we see is that many schools invite the Centre for Sexuality in because they don’t have the comfort, skills, or capacity to teach the relationship and sex education curriculum themselves.”
The Centre for Sexuality is working towards a sexual and reproductive wellness education plan that will target underserved communities, one of whom is the disability community. In March 2022, the Centre for Sexuality received a $2.8 million grant from the Canadian federal government for a project known as the Sexual and Reproductive Health Fund (SRHF). This project was designed by the Centre for Sexuality to support the sexual and reproductive wellness of underrepresented populations, including youth, 2SLGBTQ+ people, Indigenous communities, and people with disabilities. Bruce has been appointed to work on the SRHF.
Within their four-strategy plan, strategy number three focuses on supporting the disability community. Bruce explains that they have revised their relationship and sex education curriculum, creating a comprehensive version that includes input from people with disabilities through advisory committees, and natural (family members) and professional (aides, etc.) support systems.
It is important to consider that discussing disability and sexuality is sometimes rendered more complex due to a general desire to protect vulnerable populations, such as children or people with developmental/cognitive disabilities, which is why Bruce explains that his job is to approach sex education by meeting people’s needs on an individual level. Talking about sex actually helps people understand what safe and consensual relationships look like.
“[For persons with developmental disabilities], this could look like more visuals, staying on topic for a bit longer,” he explains. “Normally, when we do relationship and sex education curriculums, we do six sessions instead of four.”
Bruce has been working in the disability field for over a decade. He explains that consolidating with people with disabilities is an important focus for the Centre for Sexuality while they are designing the SRHF.
“It just doesn’t make sense for neurotypical folks to say, ‘This is what accessibility looks like’ without the input from disabled folks who actually have that lived experience and are moving and navigating through an inaccessible world,” says Bruce. “With any project, it should be like that quote, ‘No conversation about us without us.’”
It’s not a black and white world
Disability is diverse. Sex is diverse. Both are different for everyone.
“A lot of people, when they hear the term disability, they think of people who have physical impairments, where it prevents them from walking, seeing, or something with senses in some way,” says Greg Ravenda. “Mental disabilities can also hinder a lot of people’s lives.”
Using he/him and they/them pronouns, Ravenda identifies as having a mental disability and that their journey to freely express themselves, in both their sexuality and their disability, is still ongoing.
“For a large chunk of my life, I didn’t really understand a lot of things about how I’m wired and coded, and just who I am as a person.”
Ravenda further explains that their upbringing contributed to a lot of the harmful notions they believed about sexuality and disability.
“I grew up in a very white-dominant neighbourhood in Calgary. I repressed a lot of my sexuality growing up. With sexuality, there is no black and white, it’s very grey, there’s no binary. People think you’re either gay or straight, and people think you’re either disabled or you’re not disabled. There’s so much more going on in both fields that people won’t take the time to learn about.”
Ravenda describes their experience with disability as mentally and emotionally debilitating, and that sex complicates things further.
“I’ve had previous relationships where I hadn’t known that [disability] was at the forefront of my inability to, you know, perform sometimes with partners. This was because I had incredible mental duress. I had mental disabilities and I didn’t know that, so I didn’t know how to communicate that with people. Then those people started thinking it was [a problem with] them — they weren’t attractive enough, they weren’t sexy enough, they weren’t doing things I wanted them to do. That wasn’t the case whatsoever.”
The lingering memories from one particularly challenging relationship left Ravenda feeling insecure for quite some time.
“Not only did I feel unwanted sexually, but I didn’t feel like my actual sexuality outside of the bedroom was respected, either.”
Ravenda takes a moment to breathe, as revisiting this feeling is saturated with painful memories of a past flame. But it hasn’t been all bad. Ravenda explains that receiving an official diagnosis was a life-changing experience.
“It felt like this was truly one of the first times I had been seen. I realized that I live with a disability, and that it can be aided and that I can have help and support with these things. A lot of people don’t know that they live with certain disabilities or conditions because they just aren’t taught how to recognize them, or they’re not taught that it can happen to them.”
Disability is normal, and it’s not uncommon. The concept of disability being just another part of daily life for so many is something that Bruce echoes.
“I think people would be surprised by how many disabled folks that they have been in a relationship with. Either platonically or romantically, without ever realizing [it], either because of late diagnoses or because the disabled person decided not to disclose their disability, which they have the right to disclose that information if they choose.”
Ravenda deepens this point by highlighting why their journey through self-discovery has been rendered complicated by social expectations.
“A lot of men don’t come forward with a lot of things because a lot of the time they’re told, ‘Just man up, don’t even talk about it.’”
Yep, you guessed it, toxic masculinity! And toxic masculinity also looks like stigmatizing the way people’s bodies do things differently, an inherently ableist worldview.
“A lot of men do not have the ability to get erect whenever the moment comes up. I feel like that’s a huge thing that men will hound other men for,” says Ravenda. “You can have sex without having penetration, and it’s a beautiful thing. Sex does not begin with an erection and it does not end with ejaculation.”
Twenty-something Ravenda now lives in Edmonton, and while they’re still on a lifelong journey towards self-discovery, they hope more people will accept that disability and sexuality go together wonderfully, and that disabled folks can (and do) have hot sex lives.
“We need systems that can uphold and encourage and support everyone,” says Ravenda. “Both in all kinds of sexuality and with all kinds of disabilities.”
An important piece of this conversation is acknowledging that society has long been taking the sexual autonomy away from people with disabilities, and really anyone else who falls outside of the heteronormative, cisgendered, white, patriarchal structures of life.
“I believe that with a desire or openness to expand our notion on what sexuality looks like, our societal norms would be completely different,” says Bruce. “Oftentimes, disabled folks are either fetishized or labelled as asexual. Disabled folks have been telling society for years that they are sexual beings. Society just needs to listen to these voices. It’s simple — just listen to disabled folks.”
Bruce explains that these harmful ideologies are not always based on knowledge, but rooted in shame, stigma and fear. However, Esmail says that communication, education, and real-life representation can effectively break these barriers.
“I have a panel of individuals that come to my class and talk to my students about [sexuality and disability]. They talk about how they deal with it, and the best thing is, they openly discuss it. They talk about what they can do, what they can’t do, and how some things they do are actually better.”
Esmail describes an exchange with an individual from his class, someone with a spinal cord injury, and he discusses how he possesses a special skillset.
“He goes, ‘You know that myth about men with spinal cord injuries being good at oral sex? It’s not a myth. When I’m having sex, I can’t feel it, because I have no sensation and function down there. But when I have sex, I’m here for your pleasure.’”
In reflecting upon this intersection between cunnilingus and spinal cord injury, Esmail explains that this conversation was a unique shift away from stigma.
“[It changes] that stigma from being an asexual person to somebody who’s very sexual, and at the same time, can actually enhance things and do things better.”
