This post isn’t about anything nice, and definitely not about anything sexy.
But, we need to talk about eugenics.
Eugenics isn’t just that horrid thing that happened a long, long time ago in the Holocaust of World War II.
Well, it started a long time ago, and has shown up in one form or another all over the world – but there’s pretty convincing evidence that the Nazis got the idea from us – us being power-hungry people in the United States. I mean, they probably would have come up with it on their own, but we gave them the blueprint.
We basically showed them how to do it. A bunch of U.S. lawmakers and medical administrators worked federal law in their favour, trying over and over until they found a way to make sterilizing people against their will legal, and easy.
I’ve got my nerdy, vaguely ironic voice out because this stuff is freaking terrifying and is heart-breaking enough that I want to hold it at mental arm’s length. But I can’t. There aren’t yet enough people who know this history. As I wrote about here, even the sweepingly broad, powerful, far-reaching work of reproductive justice is missing vital pieces of this history.
Why am I talking about this here? How does this relate to sexuality? When we know, for those of us who do know, about eugenics, about forced sterilizations, about the effort to make us not exist and the belief that we shouldn’t exist – for those of us who know all these things – it messes with how we view our own bodies, how we relate to others (including potential lovers), and how we connect to ourselves. It impacts the trust we have in the healthcare system, the way we approach reproductive choices, the way we approach parenting, or the decisions we make about whether to find help from social or healthcare services are keep going it on our own because the potential for judgment, the potential for being seen as less than human, is just too great.
Disabilities advocate Sassy Outwater puts it this way: “That idea
that someone could willfully prevent my body from having children just because I was disabled, even if it was only a historical thing, and is over now…
that never left my mind as I grew up.” Read the rest of this important commentary here and the post the inspired her thoughts.
(Originally published on another blog in 2014. My writing voice has changed a lot since then, but I still agree with everything I said here! I have a lot more to say on disability and harassment, and am reposting this older piece here to get the conversation started.)
***
Every time I leave my house I may experience being seen as less-than, or incapable. I may be touched, poked or prodded, physically directed, spoken down to, stared at, pursued by people, all in the name of helpfulness and kindness.
Every time I leave my house, I may be touched without my permission, not a handshake of greeting or a tap on the shoulder, but an arm-grab, an arm around the shoulders, hands against my torso propelling me towards where it is thought I need to go, an uninvited hug. My body is used instead of words. I’m touched in these ways in the name of helping me.
All of this because I am visibly disabled, some of it because I’m a small woman.
Every time I leave my house, someone will get into my personal space when I want to be left alone—in places and at times when one would expect that I could be left alone—and yes, people do follow me. In most contexts, following a stranger is called stalking. When you’re disabled it’s called the follower being kind and concerned, or not knowing better.
—
When disabled folks get to talking about personal experiences, the discussion usually comes around to all the times people touch us without our permission.
We tell each other stories. There are frequent nods of recognition and rueful, sometimes amused, sometimes mirthless, laughter.
We’ve all been there.
***
Recently, a friend blogged about walking down a street, training her service dog, while a woman—a stranger to my friend–tracked her progress, following them in her car. One imagines that this woman must not have had anything important to do right then; one also knows how incredibly rude and creepy it is to stare at someone, and that it’s considered predatory to follow anyone without their expressed consent.
Another friend adjusts his work schedule (when he can) so as to not ride the bus at peak times, when there are likely to be more people engaging in what he calls “the grabby”–physically grabbing and directing him to an empty seat, or on or off the bus. Sometimes (not always) this grabby is accompanied by queries as to whether he needs help, but people rarely listen to his “no.”
What never seems to come up in these commiseration sessions about our experiences as disabled people in public spaces is exactly what to call what happens to us. For lack of a better term, I call it street harassment.
Unlike many forms of street harassment, what people with disabilities experience in public spaces is all but invisible, not because onlookers are accustomed to it, not because they want to pretend it’s not happening, but because most of the actions comprising this harassment are chalked up to kindness, ignorance, concern, helpfulness, or good intentions. Who wants to put down anyone’s good intentions?
How do I know it’s perceived this way? Because people make these excuses for their own and others’ behavior. Frankly, it’s tiring after a while to hear that someone getting into my personal space, or making assumptions about me, or handling my body or my mobility aid without asking is just trying to be kind, or doesn’t know any better, or thought they were being helpful.
As a human being living in North American culture, I have certain expectations of privacy and personal space. Most of us who grew up in this culture grow up expecting that we won’t be touched by random strangers, that there is a hierarchy of touching (where your new acquaintance on the bus doesn’t stroke your arm or put their hand on your back).
As a woman, I have an expectation that people will be conscious of gender in their interactions with me. I’m often startled by the way men touch me, many of whom, I would like to think, would think twice about touching women they don’t know in the ways they touch me. The touching is obvious, out there; there’d be no way to deny it if someone was trying to be sneaky and manipulative with their intrusions.
Perhaps part of the problem here, part of the disconnect, is that I am genderless in these people’s eyes. I’m disabled first, woman second. Indeed, for some, I’m disabled first, negating my womanhood and putting me somewhere in a nebulous space of being childlike but having a woman’s body and doing adult things (like going out and buying my own groceries).
it’s also tiring not having words to describe this experience, this sensation of always being on guard, for there’s no place, time, or way this might or might not happen. it just does…single women, married men, concerned citizens of all genders may think they know exactly where I want to go (without asking me, or if they ask, not waiting for an answer) or draw attention to me I don’t want or need, or blow a need or want I do have into far greater proportion than it needs to be.
Most of what I’m describing here isn’t explicitly violent, though physical and sexualized violence against people with disabilities does happen, in both private and public spaces, at alarming rates.
No, it’s not explicitly violent, but not being aware of it also paves the way, I think, for more violence. The more often something happens, the less likely people are to notice it.
Plus, it truly does unsettle me that disabled people’s space is invaded every day.; that this invasion leads to people feeling worn out, so demeaned, so reduced—and yes, so threatened by actions which onlookers see as considerate. It’s alarming that a disabled woman was surprised when her friend apologized for having to physically hustle her through an airport security line in response to TSA agents’ curtly given directions to hurry up (after all, that physical manipulation to follow the rules is seen as something that just has to be done, and we aren’t supposed to have feelings about it).
I’m sometimes alarmed by the strength of relief expressed by disabled people (including me) when a trip out in public is positive, with people talking to us like adults, respectfully assisting us only when asked and giving us loads of personal space.
We’re frequently objects of curiosity in public spaces. If it stopped at curiosity, we’d be doing fine, but that curiosity often translates into intrusiveness.
(I first published this piece on another blog in April 2014 in response to an article on RH Reality Check – now called Rewire. It’s 2017 now. My writing voice is different. The way I analyze and critique issues is different.
Reproductive justice organizations are now making more of an effort to include disability and disabled people in their education and advocacy work.
…and I still stand behind everything I’ve said in this piece. Recent history is as important as long-ago history.
Advocates are doing better, but the kind of erasure I talk about here is still happening, which is why I’ve chosen to republish this essay.
****
If we don’t remember history, we’re doomed to repeat it. That’s probably one of the first cliches I learned.
Instead, We should probably be saying: If we don’t do our research, and talk to a good cross-section of people, our understanding of history will be skewed and incomplete—and nothing good can come from that.
Not so catchy, but much more real.
We’re still leaving people out when we write histories.
Even supposedly inclusive, progressive narratives are excluding people’s realities.
Even progressive, thoughtful writers are leaving out key pieces.
As a visibly disabled woman, I’m particularly conscious of how the histories and realities of disabled people are often left out of dialogues which include the histories and realities of other marginalized groups. This stings a little every time I see it, not because it’s specifically my reality being left out (as a North-American born white woman with economic advantages it often isn’t, but because the minority groups discussing these realities aren’t doing their research. They’re not practicing what I think of as true inclusiveness, not just making sure all the voices are at the table, but including the histories and realities of those whose voices aren’t at this particular table. Yes, it’s a fine line between including those histories and speaking for the people those histories discuss (and, yes, we want to avoid speaking for or over others) but so long as we use documented fact and anecdote, we’re practicing due diligence.
Can we include every single person’s reality? Of course not. Someone will always be left out. We’re too individual, have too much amazing, beautiful diversity, to expect that every one of us will always be represented.
Yet entire populations, populations with well-documented histories and realities if one knows where to look, are still being left out.
I’ve been noticing this particularly in the reproductive justice movement – it makes me especially sad to see it here – and it was glaringly obvious as I was reading this position on proposed changes to consent requirements around sterilization published at RH Reality Check.
I’m pleased that the groups who put this position paper together are reminding the public about this country’s long history of reproductive abuses against women, and urging reproductive justice advocates not to be so quick to dismiss safeguards against those abuses. But am disappointed that such an aware, well-cited mini-history leaves out the well-documented experiences of disabled people.
Disabled women were one of the primary targets of involuntary sterilization laws, which fell under the umbrella of eugenics, and became particularly prevalent starting in the 1920s, yet this article mentions disabled women only once.
Any quick Google search will pull up references to online and offline resources about the unconsented/involuntary sterilization of disabled people.
I found those on the first page of my Google search.
I’m disappointed that the organizations who signed this position paper left out this key part of history.
I’m disappointed that they seem to be following the common trend of rendering invisible any reality that doesn’t specifically speak to the one they’re trying to bring attention to.
While this article nicely addresses the pros and cons of a thirty-day waiting period before sterilization procedures—we’re not nearly far enough away from the days when sterilizations were incorporated into other medical treatments without patient consent to do away with safeguards—I do wish that the mention of women with disabilities that does exist wasn’t so perfunctory and one-dimensional.
This is the only reference to women with disabilities in the entire piece:
What improvements to the Medicaid sterilization consent form would reflect the needs of women with disabilities, limited English proficiency, and low literacy levels, who want sterilization?
This feels an awful lot like being talked about, while rendering our collective history invisible. In other words, we don’t get to be part of the history-telling (and in so doing be empowered to speak our truth) but we can fit into a bullet list of policy-considerations.
Not only does this single mention in an article all about something that has routinely happened to us erase our reality, but it reinforces the assumption that the relationship women with disabilities have to sterilization is unilateral, and always in the direction of exploring sterilization options. This reinforces the idea that women with disabilities are not capable of the full range of reproductive decisions that other women—other people–are capable of, and that we don’t, in the course of our lives, find ourselves considering and making that same range of decisions.
I can tell you that this just isn’t true. Disabled people worry about getting pregnant, make decisions about whether to parent, have abortions, feel a range of feelings about those abortions, experience unwanted pregnancies and unplanned parenthood, think about how many children they want to have, wind up having fewer or more than they’d intended, and all the other health and life circumstances that fall under the rubric of reproductive rights or reproductive justice.
Looking at the list of organizations which put this position paper together, I noticed a distinct lack of organizations run by women with disabilities or devoted to disability research. I reached out to my favourite grassroots women with disabilities thinktank Gimp girl, to find out if any organizations were in fact addressing reproductive justice for disabled people.
Both look excellent, and I’m happy to have them in my virtual rolodex of research.
They don’t appear to be doing any significant cross-issue work, such as with other reproductive justice organizations, though, and reproductive justice organizations don’t appear to be looking critically at the place of disability or disabled people either.
It’s not an easy thing to critique the work of prominent reproductive justice organizations, particularly when what they’re calling for is critical dialogue.
However, When we have a position article that references secondary sources, and which was clearly researched and constructed thoughtfully, the absence of information right there in the open, ready for the taking by anyone, is disappointing and frustrating. The reduction of disabled women’s reproductive realities—no matter how unintentional—to how and whether they can access consent forms for sterilization is, again likely unintentionally, harmful.
How do we, I wonder, integrate the voices of people with disabilities, and awareness of our collective history, into the general reproductive justice conversation? How do we break down the barriers that make reproductive justice activists afraid or unwilling to include disability and disabled people’s role in the movement?
I cannot talk about illness and how it affects me, without mentioning how it is tied to my immigration status, or my
choices and access as a queer upper class woman. The axes of benefits and struggles at which I find myself leads to a particular set of options. From there, I make choices. There, I live daily.
— Nitika Raj, The Wholeness Project
Instead of honoring difference, we are asked to assimilate. Supposedly, this is to help us but it only inevitably erases who we are and diminishes the experiences we face.
— Kay Ulunday Barrett, Constant Dissonance: Our Noise is Dangerous
Criptiques is a collection of essays and stories that challenges ideas of what it means to be disabled without ever erasing the true, beautiful, frustrating, painful, uplifting realities disability brings into our lives. Disabled people ar so often seen as one-dimensional human beings; defined by the pain we’re in, or the limmits we have, or the beliefs of the people who look at us. This book, written entirely by disabled people, moves past that narrative of being observed, past the how-tos, the statistics (though there are plenty of those, into what the people behind those statistics actually look like, feel, do, and experience each day.
Who are the people of Criptiques? They are artists, scholars, musicians, activists, deep thinkers, sexual beings, mothers, lovers.
What does it mean to be “criptical?” It means equl footing and value between Stefanie Hillary’s academic piece on frida Kahlo, art history, and disability, and Leroy Moore’s provocative Droolilicious, a Krip-Hop piece.
It means exploring the usual disability-related topics in unusual ways. Danine Spencer lays out the grim unemployment statistics for women with disabilities in the United States alongside her own struggle with physically not being able to meet today’s demanding work environments. Bethany Stevens shares the many ways her former workplace, a disability policy research department, was inaccessible and unwelcoming. In What Should you call me?, Emily Ladau, who has been disabled all her life, shares that nondisabled disability advocates have questioned the sincerity of her advocacy based on her objections to using person-first language.
Being criptical means introducing the unexpected.
In most disability anthologies, we’d expect to see at least one piece on the miracles of technology. Instead, Eva Sweeney tells us how and why, for her, using a simple alphabet board makes communication faster and easier than it would be with a computerized communication device.
We hear about sexuality: From Elsa henry, possibly the only blind burlesque dancer in the world. From Jen Rinaldi and Samantha Walsh, who explore the ways their experiences as young disabled women were affected by the assumptions that all young women start dating men. From Alissa Hillary, who shows us how autistic people’s sexuality is erased. From Leroy Moore, who shares how his drooling, a part of his disability he was always told to control, is exciting and sexy to an intimate partner.
Criptiques makes its readers wake up and see the world differently. or me, that “aha” moment happened while reading Ben G.’s On Radicl Empathy and Schizophrenia: “To say that those years of my
life correspond to a brain problem and nothing more, is to … reduce my own experience of myself, and at worst, to rob me of the experience altogether.”
There is more in this book, on our collective fears of aging and death, on body image and beauty standards, on parenting, as a disabled person, on (usually unpleasant) encounters with the medical system.
Criptiques should be required reading in most university classes. It’s hard-hitting and funny, sad and rhetorical. It’s the kind of book I could – and have – read many times and still learn something new or still feel the flutter of my heart opening in joy and admiration for these writers.
And I don’t just want to se this book on the shelves of Disability Studies students. This needs to be part of the curricula for many disciplines: gender studies, American Studies, occupational therapy, pre-med, nursing, social work, and more. Instead of teaching disability as a separate subject, Criptiques would allow professors to teach common topics like anti-racism, body image, medical and legal concerns, etc. starting from a disability or criptical perspective.
Today’s film is short, but long on great energy and ideas.
Laci Green and her friend Olivia give us the lowdown on sex and disability, everything from dating, to dancing, to fetishizing.
Two gems from Olivia:
People who fetishize (are sexually aroused by and attracted to) disability aren’t wrong or bad. The problem with fetishizing disability is more about the attraction being to the disability, not the person, and relationships are with people, not disabilities.
Olivia also points out that dancing with someone in a wheelchair usually means getting up close and personal (she describes her standing partner as practically giving her a lap dance), which can be sexy for both.
Unfortunately, the short format means some topics get short-changed. The discussion of sexuality and intellectual disability feels like it was tacked on at the end and rushed through. Sometimes, including everything doesn’t lead to full inclusion value-wise. I think it would have been fine to leave that topic out altogether and keep the focus exclusively on physical disabilities.
Again, though, the energy in this interview is terrific, and it’s a great introduction to different ideas, and to the general concept that disability doesn’t mean lack of sexuality or sexiness, and doesn’t mean the lack of desire for intimate relationships.
This film is fully captioned for people who need or want that.
When will we move past using words like “inappropriate” to talk about sex crimes? It’s more than inappropriate to, say, punch or steal from someone – it’s illegal. Unwanted and unconsented sexual contact must also be recognized as illegal, not reduced to being morally inappropriate.
The judge also cited handasyde’s deep remorse and guilt as part of the reason for the short sentence. These are feelings – moral consequences if you will – not legal or social.
Legally, this case is over, but the victims won’t forget. Their families won’t forget.
There’s so much wrong here that I don’t even know where to start.
We’re told that Craig Handasyde is a religious man, that he has eight children, that thirteen people (including two ministers) stepped up to give him a character reference.
We’re told that he voluntarily resigned from his job, and, later, turned himself in to the police.
Does anyone stop to question the time lapse between the last time he claims to have abused someone (2011) and when he resigned from his job (2013)?
Does anyone stop to remember that the abuse he’s admitted to and now claims to want to make amends for spanned thirteen years? (That’s more than a decade, half a generation.)
Do any of his esteemed thirteen references (one for each of the years he violated his clients’ trust?) stop to ask themselves how they could have so deeply misjudged this man?
We’re told by his lawyer that “What emerges is a picture of a man who is extremely passive and lacks the ability to assert himself.”
Let’s look at some other facts:
He admits to ignoring the efforts of one of his victims to push him away.
He invested time and energy in extra training and certifications, thereby winning the trust of his clients’ families and his employers. This means less supervision, more of a chance to do what he wanted, when he wanted.
Craig Handasyde is an abuser. He worked in a position that gave him power over others. He worked with some of the most marginlized and invalidated people. Maybe he felt as if he couldn’t assert himself, but he definitely didn’t act like it.
The claims Handasyde’s lawyer is making on his behalf don’t come anywhere near justifying his behaviour. After all, Where was the conscience that made him turn himself in when someone was pushing him away, telling him, more clearly than words ever could, to leave him alone?
We’re supposed to see a man who was in incredible psychological pain.
He may have been, but the hard truth is that this man sexually abused his clients because he wanted to, because he had no care or consideration for his work responsibilities or the emotional well-being of his clients, because he thought he could get away with it.
This man gets to be as religious as he wants, as gay as he is. He doesn’t, in my opinion, get to use these as explanations for abusing anyone, disabled or not, especially not anyone he was supposed to be protecting.
It’s frustrating, too, since this case just reinforces the beliefs that gay people aren’t safe to be around. The headline on one story about Handasyde’s crimes tells us that he spent years “hiding his homosexuality behind victims who could not communicate.” Again, one thing has nothing to do with the other. He didn’t sexually abuse his clients because he was gay, though he may have justified it to himself that way.
Handasyde’s lawyer is calling what he did a “secret life.” A secret life is having an affair, visiting sex clubs, doing stuff that isn’t criminal but that you’re still afraid to tell people about.
Describing a crime as a secret life lends it an air of mystery and eroticism it doesn’t deserve.
I don’t care how contrite Handasyde is now. He was not contrite for thirteen years. This was not a crime of passion, or lack of control. This was a crime of intention.
It’s also truly sad that his victims are portrayed as people who can’t communicate.
One of them did, by pushing Handasyde away. Another had a noticeable personality change, becoming more aggressive. Another victim’s mother describes him as not having a “happy nature” anymore.
Imagine not being able to tell someone how unhappy you are. Imagine not being able to tell them that someone is touching your body and doing other things you don’t like or want. Imagine trying to tell, and having peple not understand.
There are no easy answers, especially since most of the tools used for getting information from people who don’t communicate verbally are visual, and most of the victims in this case are blind.
I don’t know what could have been done to help these men be safe from their abuser, but it’s worth pointing out that in those entire thirteen years, no one ever suspected Craig Handasyde of doing anything wrong, or, if there were suspicions, no one ever acted on them.
Then my behaviour therapist called, I asked him how to get a girl friend, he said he’d draw up a plan with a step by step process.
…
Did you know that there are 176 steps that you need to climb in order to get out of loneliness.
That’s a lot. Loneliness can feel like a deep pit can’t it?
— One Step Out Of Loneliness, Dave Hingsburger
Watch this animated film from Dave Hingsburger It’s safe for work unless your workplace objects to words like sex and penis.
Honesty, self-awareness, a wicked sense of humour, an unflinching sense of the ridiculous. You generally need all of these to be able to talk as candidly about your sex life as Kaleigh Trace has done in Hot, Wet, and Shaking: How I Learned to Talk About Sex.
These essays are about a lot more than talking about sex, though. They’re about love, and laughter, and what Kaleigh’s Grandma thought about the explicit language on her blog, and how to prepare for an interview at a sex toy shop (hint: you don’t need to be a sexual superstar), and first sexual experiences…
And through all of these stories, there’s pure, playful honesty about being disabled in a world that doesn’t easily accept people who are visibly diferent.
Hot, Wet, and Shaking is full of delicious details that made me feel like I was right there with the author. I feel like I could be right there with her when she’s talking about that time she pulled a sex ed prop out of her purse – in the middle of the grocery store (A Bag Full of Dicks). Reading Looking For Blood,I feel right along with her the fear and frustration of needing reproductive healthcare in a world that wants to make that hard to get, and wants you to keep it a secret. I nod knowingly as she describes her first crush on a woman: “My attraction was so painfully visceral that for a short time I was truly convinced not that I was gay, but that I had the stomach flu.”
Other stories share some of Kaleigh’s sexual misadventures (And The Warmth Spread Over Us), her awesome-sounding bike and it’s wobbly rider (How I Learned to Stop Worrying and Love My Tricycle), a delicious (in my humble opinion) piece of erotica written in a fit of frustration that there are almost no sexy stories about disabled people.
The Lady and the Butch is a contender for one of my favourite stories. It’s so delightful, I wish it were true – 100% all the way true. Really, an older lady coming in to buy her first vibrator ever, because her “queer lesbian” granddaughter told her to? It doesn’t get much more novel, and amusing, and ultimately touching than that.
But Kaleigh, while she wants to share with us the awesome experiences she’s had and self-discoveries she’s made since starting to work for Venus Envy takes her customers’ privacy seriously, so all store-related stories are fiction based on real-life people and events.
Where this book really shines is in the stories in which Kaleigh is being unfailingly vulnerable with us – not just because she’s usually talking about sex – though that’s great too – but because she shares parts of herself that make her uniquely her, and she sheds light on sexual stories and scripts we don’t usually get to hear but which are a part of a lot of people’s lives.
Fresh-Faced and Orgasm Free is some of the best writing in this book. It’s so much more than a “how I learned to masturbate” story. Kaleigh shares what it’s like to grow up with physical disabilities, to grow up interacting with her body in mostly medical ways. She describes lerning how to drain her urine through a catheter, how she became familiar with her genitals as a place she needed to manage.
As an adult she realizes: Touching myself was so common that it was hard to imagine it as a sexual experience. It was functional,
not hot. Necessary, not fun.”
Trying to learn about masturbation through the sex guides she sells at work, she realizes that none of them really speak to her experience. They all assumed that bodies work in certain ways…that all people can use their fingers to circle their clits, that everyone’s nerve endings fire in pretty much the same ways. “It occurred to me that perhaps I had yet to learn my way of coming because all the step-by-step methods I was reading, all the porn I had watched, and all the sex I had had thus far had not considered my disability.”
There’s so much more I’d like to tell you about this book, about the lyrical ways Kaleigh describes her body, about her observations of and fears around fitting into queer culture, about just how complex and unexpected the piece of erotica was.
But I’m not allowed to copy the book out here, so I’ll just encourage you to get it for yourself.
Thanks so much to Invisible Publishing for giving me an electronic copy of this terrific book.
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.
What do you do when your abuser is also your care provider, someone who bathes you, or dresses you, or whose assistance you need if you want to leave the house or communicate with other people? What do you do if people constantly tell you not only how good a person your abuser is, but how courageous and wonderful they are for helping you? What do you do when your abuser doesn’t treat you like a human being, but neither does much of the rest of the world?
Even though people with disabilities are statistically more likely to experience relationship violence than nondisabled people there’s virtually nothing about what disabled people experience included in anti-domestic violence education, fundraising and awareness campaigns, or other forms of activism. (And considering that what we know about the prevalence of relationship violence for people of all abilities is only the tip of the iceberg, that’s scary.)
It’s not so surprising though, that disabled people are mostly absent from awareness campaigns, when we consider that disabled people are often invisible in society, and that invisibility is often what makes intimate partner violence (or violence of any kind) possible.
When an abuser can physically control if their victim leaves the house, and whether they get to talk to anyone, or can contradict their partner’s words and be believed because their partner has trouble communicating or whose mental illness sometimes affects how they experience the world around them, the incidence of violence against people with disabilities becomes even more invisible.
I recently read a small, qualitative study that looked at the impacts of intimate partner violence on the lives of women with disabilities.
As with research of nondisabled people’s experiences, a lot of the material on relationship violence and disability centres on the experiences of women. Men, and people who don’t fall into the gender binary, also experience relationship violence. The lack of research and activism with these groups means services can be rare or unhelpful.
The women in this study identified abuse as the most significant health risk they faced.
We can’t ignore that!
Many policy changes in the United States are calling for healthcare providers to screen for abuse. The implications of this need to be considered carefully when it comes to disabled people.
Their abuser may be with them during an appointment to facilitate care or communication, and it may be assumed that the patient always needs their caregiver with them.
It’s impossible for any victim to truthfully answer the kinds of questions suggested here, if an abuser is in the room.
Most people can communicate in some way, and most people can find a way to respond to these questions, which just ask for a yes or no answer – response options could include head gestures, hand gestures, eye blinks, words on a communication board or an electronic communication application (such as on a smart phone or tablet), sign language, or talking.
It’s appropriate, and necessary, for a healthcare provider to conduct at least part of a patient’s appointment with no family members or other caregivers in the room, unless the adult patient makes it known that they want someone to stay. Healthcare providers need to take an active role in meeting patients’ communication needs themselves, such as by making sure whatever technology the patient uses is there with them, learning how to use that technology, or providing a sign language interpreter. (Tip:
If a romantic or intimate partner (or anyone, really, other than the patient) says it would just be simpler for them to speak for the patient than for the patient to communicate directly with the healthcare provider, red flags should pop up like they’re on helium. They may put it in terms of making things easier for the doctor. I’d hate to think any doctor (or other healthcare provider) would privilege their own ease over communicating with the patient, but I’ve heard of too many times when a medical office has refused to do the work of getting interpreters for patients who need them to believe that this couldn’t happen.)
Many of the health factors research has shown are prevalent in people who experience abuse may be chalked up to disability without a full evaluation being done, so healthcare providers need to check their biases and beliefs about disability and illness and give their patients comprehensive care. Sometimes, when healthcare providers are less familiar with a patient’s medical condition, they may mistakenly attribute small changes to that condition, or presume that these small changes will be less bothersome to someone with a disability, so be less likely to investigate their cause. There’s also the assumption a lot of people make about disabled people’s relationships not being romantic or sexual in nature, coupled with assumptions about what abuse looks like, that could colour healthcare providers’ evaluations of whether their disabled patients could be at risk of relationship abuse.
Being abused can both cause disabilities—physical as well as psychological—and exacerbate existing impairments. Experiencing abuse can impact how people manage their impairments or medical conditions—withholding access to healthcare is a form of abuse. The physical and emotional toll of abuse can lead to stress-related illnesses, compounding abuse victims’ disabilities with additional disabilities and illnesses. (as someone with multiple disabilities, I can personally vouch for the ways that multiple impairments make it harder to mitigate being disabled in this world.)
Another key factor that came up in the study I mentioned above was low sexual self-esteem. When we’re constantly bombarded with airbrushed photos of models, and magazine articles telling us the 101 best ways to please our guy in bed (not everyone has—or wants– a guy, and sexual pleasure can’t be broken down into surefire tips the way, say, scrambling an egg can be.) Meeting these cultural expectations is impossible. For people with disabilities, who often cannot do sexual things the ways other people can, and the ways our culture says “real” sex can and should be done—and who’ve gotten repeated messages that their sexualities either don’t matter or don’t exist—having any sort of sense of sexual self-worth can be a challenge. The women in this study talked about not being physically able to meet the sexual expectations of their partners, or the expectations society has of how women should be an act sexually.
The participants in this study whose sexual self-worth was lowest were those with disabilities acquired in adulthood, changing their sense of self (sexually and otherwise) and, because of these cultural messages, making it hard to build a new, just as strong, sense of self.
Several of these women expressed that they dated men they would not have considered prior to their injuries, dated men who had criminal histories, or with whom they didn’t click, or whom they didn’t find attractive. This does not mean that they dated men who were more likely to be abusive; it says, I think, that they had perhaps turned off, or at least dimmed, their own warning signals.
Some people with disabilities may tolerate abuse in relationships out of fear that no one else will want them. Sending this message is common among abusive partners regardless of anyone’s abilities, and this form of abuse is even more insidious for people with disabilities because many have also gotten that message from friends and family. As I mentioned above, many people think that folks who get romantically involved with disabled people are a step away from sainthood, and they sometimes will undervalue the sexual, intimate, or equal partnership parts of the relationship.
Part of the structure of society’s attitudes towards the sexuality of people with disabilities is that, even if we do have sexual thoughts, we don’t and shouldn’t have the time to act on them because we’re just so darn busy being disabled. If low sexual self-esteem is a risk factor for abuse, then someone had damn well better make time for recognizing disabled people’s sexualities.
Some of the risk factors correlated with experiencing relationship violence are especially common among people with disabilities. Unemployment rates are high among people with disabilities (the study linked at the top of this post also made this connection). And, while the specific statistics vary, it’s generally understood that people with disabilities are abused, in both childhood and adulthood, at higher rates than people without disabilities.
We have a culture that makes all sorts of excuses for abusers, and all sorts of excuses for why it’s not more inclusive of people with disabilities. If we had true community accountability we wouldn’t tolerate abusive behaviour. We wouldn’t have, when a parent attempts to murder a disabled child, an outpouring of sympathy for that parent, instead of the child she harmed.We would have a culture that says: “We know life was hard for that parent, but it’s never okay to try to kill your child.” That culture would also say: “We need to do better by disabled children and those who care for them.” (Yes, I’ve been talking here about intimate partner violence, specifically, but family violence is similar in that it happens in the home, and within the family unit—both of which are considered—like romantic relationships– beyond reproach and closed to outsiders.)
Very few organizations work specifically with disabled people who have experienced abuse. Thesetwo are exceptions.
We need fewer exceptions. We need agencies to stop working on a scarcity model that makes being inclusive of and accessible to disabled people seem like too much work – like something they just can’t do with the limited financial and human resources they have. We need online and offline awareness campaigns to include the voices and experiences of people with disabilities, not as unique additions to the anti-abuse message, but as full and equal participants in sharing stories and support, and finding solutions.
