Last week I had the privilege of being on a panel about stigma, sexuality, and disability with Andrew Gurza and the cohosts of The Pulse.
We managed to squish a lively discussion of flirting, dating, stigma, self-disclosure, and loads more juicy stuff into a 35-minute radio segment.
The best part is that the show was recorded, and turned into a Podcast – and it’s up there on their Web site, right next to shows they’ve done on adaptive tech, travel, TV and movies – and more serious topics like the underemployment of disabled people, and the lack of services for Indigenous people with disabilities.
I really appreciate that the staff of The Pulse included a show on sexuality, acknowledging that it’s as big a part of life as all these other pieces.
You can listen to this conversation about stigma, sexuality, and disability at the following links:
Can we all agree that asking random people on the street (or in the mall, or anywhere, really) about their sex life is just plain creepy?
People with disabilities are asked, much more often than you’d think, how, or if, we have sex. No, really, this happens all the time. If it’s not about sex directly, it’s something to do with relationship status. Maybe it’s random questions about whether you’re married, or about your dating life. Maybe it’s your server at the fancy restaurant assuming the person you’re sharing a romantic candlelight dinner with is “just” a friend, or worse yet, your brother or payed caregiver.
Honey, if they’re with me then they’re not looking for normal — and I don’t mean because I’m crippled. Because sex with me can mean any fetish, any request you’ve always been afraid to make, any position you can think of. Because sex with me can be watching porn together, reading erotica together, or preferably making our own of both…
As with anything both taboo and sexy, Internet news sources picked this up right away, with headlines like What It’s Like to Have Sex with a person With a Disability.
Kelsey’s sexuality is clearly broad and flexible, and she has the gift of a lovely voice and the art of creating words that grip us and won’t let go.
I know I’ll be going back to this video for inspiration -the sexy kind, not the inspiration porn kind.
But this doesn’t speak to all disabled people’s sexualities – and I doubt Kelsey means it to, since she named her poem My Body – even as it’s the perfect challenge to the idea that disability makes someone not-sexy and incapable of or uninterested in sex, or to the idea that “normal sex” – (whatever that is) – is impossible for disabled folks.
The lives of people with disabilities are so often boiled down to being about our disabilities alone, – usually because nondisabled folks can’t imagine how life with a disability would work – that the idea of grocery shopping, or getting dressed, or having sex with one’s partner become exciting or alien concepts nondisabled people want to learn about the way they’d learn about astronomy or the mating habits of giraffes.
There’s also the assumption that all of these life activities are controlled first and foremost by the disability – that disability changes everything. Newsflash: It doesn’t. We’re just as likely to swoon over cute puppy pictures (or stories for those of us who can’t see the pictures), have ridiculous laugh-fests with friends, or get frustrated over the rising costs of milk. The ways we get dressed – whether it’s how we know what colours we’re wearing or how we put on our underwear or tie our shoes – are just the ways we dress, not anything better, or worse, than dressing the “normal” way – because that way of dressing is normal for us.
“I want to learn more about accommodating people with disabilities if I’m going to have sex with them.”
This was one of the answers I got to a question on Twitter asking what people most wanted to learn about sex and disability.
Since it was sex we were talking about, I asked if this wasn’t actually more about pleasure than about accommodation. When I think about accommodation, at least when it’s related to disability, I think of Braille signs on elevator buttons, equal opportunity employment, or buses that announce stops and have wheelchair lifts – not sexual intimacy or X-rated play time.
It turned out this person was concerned about hurting a potential disabled partner if he didn’t understand how their disabled body worked.
Fair enough – but… We don’t know how anyone’s body works until they tell us, until we’ve spent enough time with it to learn what every little sound or wiggle means. It ultimately doesn’t matter what someone’s body does or doesn’t do; no “Sex and Disability 101” Or “Sexual Exploration for Everyone” workshop is going to be able to tell you how to have sex with them.
The fun, and fear, of sexy time with a new partner is the same regardless of ability. The challenges come up when we’re faced with things we’ve never encountered, and sometimes have never heard of.
Knowing something about different disabilities can take some of the mystery of disability out of the equation, and that’s a good thing. The more familiar words and realities like cerebral palsy, hemiplegia, degenerative retinal diseases, PTSD, etc, are, the less unfamiliar they’ll be to people, and the quicker they can get on with their everyday business, including getting it on with a new lover. It’s also a relief to disabled folks when people understand the basics of what we’re telling them, even if it’s as simple as knowing basic human anatomy.
Sure, there are general disability-related differences in romance and sex we can pretty much always assume to be true: A blind man can’t glance across the room and entice an alluring stranger with eye contact. A woman who uses a wheelchair to get around may, depending on the nature of her disability, need help in and out of the chair, with changing positions, with going to the bathroom after sex. A deaf person will likely want to leave the lights on so they can read a lover’s lips, watch body language, or do whatever they need to do to communicate while getting it on.
Understanding disability by studying WebMD and Wikipedia won’t help anyone learn a lovers’ body.
We want answers, and formulas, for sex, and for understanding disabilities, and there just aren’t formulas for understanding either, or both together.
No one’s limbs work the same way, no one’s brain chemicals do the same things, no one person likes exactly the same sexual activities in the same way.
Becoming an encyclopedia of disability and intimacy will only take anyone so far in growing a relationship with a disabled or nondisabled partner or playmate.
I don’t necessarily suggest conducting an interview with someone you want to have sex with – unless question-and-answer sessions light your erotic fire, and theirs – but discussing questions like the ones below can be a good place to start if you’re just not sure what to do with this playmate you find so hot:
What feels good to you?>
How do we have sex so I don’t hurt you?
I want (insert your deepest fantasy, or just what your body craves that day). What do you want?
I think the connection we need to keep making between disabled people and sexuality is our right to want sex, to think about sex, to be sexy and express our sexuality – or not to do any of those if we choose not to. For some people that includes the right to have sex, but for others it’s more about the right – and the responsibility – to live in a world that’s so often about sex appeal, and where so many interactions are expected to have sexual overtones.
We used to describe these attitudes towards disabled people’s sexualities as seeing people with disabilities as “asexual.”
Asexuality is, however, an actual identity or orientation. It’s not generally seen as an absence of sexuality, but as a way some individuals relate to their own sexualities or with the idea of sexuality in general.
Disabled people can, and do, identify as asexual, without that having anything to do with their disability.
I think highlighting the variability of disabled people’s sexualities is important, and sometimes overlooked.
We emphasize so much that disabled people are sexual beings, that we forget that we’re allowed to be lousy lovers, or to have sexual relationships that don’t work, or to have lovers who just don’t enjoy our sexiness without that making them narrow-minded, ableist jerks. We forget that having sexual rights also means we have the right to be lousy in bed, that we have the right not to shock others with our sexualities, that we have the right to be celibate by choice.
So many disabled people don’t get choices, though. They don’t get privacy, or say in who provides their personal care, or who knows about their personal business. The idea that disabled folks who need physical assistance with daily personal-care needs (dressing, bathing, caring for their home, etc.) could also get assistance (without judgment) with the parts of their sexual and intimate lives they physically can’t negotiate themselves is deeplycomplicated.
There are no easy answers – so much of what I’ve brought up here would, and has, fill books – and there are no quick fixes for making mass changes to attitudes about disability, or sex, or disabled people expressing our sexualities. We’re talking about changing generations of attitudes about two experiences people hold so much fear around in general.
The lineup was amazing, and I learned so much – about consent, about community-based research with youth who have HIV, about how to use gender-neutral language to talk about sexuality and relationships – and about sexuality and disability.
Kaleigh Trace presented Desirability as Resistance: Reading Disability Differently, the presentation title that finally got me to stop dithering and register for the conference.
The aim of this workshop is to critically examine our internalized (and often ableist) ideas about what it means to be disabled, and rewrite these constructs by looking at some of the work being done by radical disability activists today. In particular we will examine disabled activists who work to be visibly sexual. As such, this workshop will benefit all folks who work with people with disabilities and any individuals working in sex ed. through a look at disability and sexuality.
One of the beautiful things about this session was how open and comfortable it felt to be there. Kaleigh got her participants laughing, and gave us plenty to think about, but where she really shines as a presenter is in presenting enough information, and asking the right questions, to spark open and emotionally safe participant conversations. I think we learned as much from each other as we did from her, and most people felt able to share experiences and opinions that made them more vulnerable to the rest of us. Kaleigh also does not set herself up as an authority. She was very clear with us that she speaks about what she’s learned and experienced, from her perspective as a disabled white cisgender woman – hers are not the only opinions or lived realities.
Kaleigh introduced us to the justice model for understanding and talking about disability. Two of the most well-known models of disability are the medical and social models. The medical model focuses on “fixing” disabilities, and people who follow it tend, in general, to ignore the expertise and abilities of disabled people themselves. The social model teaches that society’s prejudice and lack of physical access and acceptance is what disables people, but fails to take into account that many people are disabled by pain or illness, individual situations that society, as a whole, can’t do anything about. A justice model of disability, helps us look not only at the social roots and causes discrimination and exclusion of disabled people, but also the individual histories, experiences, and identities that shape each person’s life.
We talked about desirability, about how we’re taught that disability is the opposite of beautiful or attractive – that any body that doesn’t conform to beauty standards is automatically considered less than. Beauty standards are different from culture to culture, and have definitely changed over time. Right now in Western cultures, beauty standards are hinged on the ability to conform, to be symmetrical (or, at least, to be asymmetrical in a chic way), to be willing to put your body on display in some way (not necessarily through showing skin), to move and present ourselves only in ways that are pleasing to other people (and it seems to be assumed that everyone will find the same, or similar things, pleasing, appealing, or even sexy).
Kaleigh took us on a quick, informal tour of what desirability has looked like – at least the forms of desirability that have been passed down to us through paintings and, later, photos – through the last 500 years in Western cultures, a look she summarized as “people in hats and dresses.” These looks are modest by modern standards. They also force bodies to conform, by covering them up and making them look the same. It’s hard to see certain kinds of disability and difference when a body is covered by fabric, sometimes from head to toe.
The kinds of clothing that are seen as desirable now, and over, say, the past sixty years, bring attention to the body, and show differences between bodies.
What we find attractive to look at hasn’t quite caught up with this trend, so that when people see more of a disabled or different body, and it doesn’t fit into the beauty or sexual attraction standard, they clasify it as ugly, or even nonsexual.
When disabled people talk about sex, especially about their own sexuality, when we change the stories about what and who is desirable by including ourselves or other disabled people, we’re turning our desirability into an act of resistance.
Resistance is a tricky thing. We talked a lot about what it is, what it looks like, and whether we actually want to do it.
Do we want to challenge stereotypes of how we’re supposed to behave or what we should say just for the sake of challenging stereotypes?
If, in resisting these stereotypes, we’re acting in ways that have us not being true to ourselves, are we really resisting what’s expected of us? Or, are we just performing a different kind of conformity?