There’s nothing about having a disability that makes someone less capable of parenting.
That feels too obvious to even say, but it’s a truth, obvious or not, that needs to be repeated over and over until people get it, until disabled parents
don’t have to fight tooth and nail to be able to care for their own children.
But, expecting and new parents with disabilities usually face doubt, or invasive questioning, or inadequate services, or loss of child custody, or months- or years-long court cases fighting for parental rights (usually while the child lives in foster care). These actions are taken, we’re told, to protect children. But these situations are usually about disability, not about child welfare. They’re about assuming that disabled adults themselves aren’t any more capable than children. They’re aboutthe lack of education legal, medical, and social service professionals get about disability, and about how that lack leaves room for personal biases. They’re about these same professionals knowingly or unknowingly setting disabled parents up to fail the “tests” put to them to judge their parenting fitness, by not providing parenting information in accessible formats (Braille, audio, large print, plain language) or by not providing accessible equipment (such as a changing table with the right set-up for a wheelchair user needs to reach everything and keep the baby safe).
Under this law, social workers, lawyers and judges (and anyone else involved in child custody proceedings) won’t be able to use a parent’s blindness as evidence that they should or shouldn’t be given custody, and blindness cannot be a factor in evaluating a person’s fitness to become a foster or adoptive parent.
Yes, you read that right. A state law was drawn up and enacted to make sure a nearly 28-year-old federal law is followed. Not just that, but the Americans With Disabilities Act protects people with many kinds of disabilities. This law focuses only on blind parents.
Why not more inclusive? I don’t know, except to guess that whoever proposed this law has a personal stake in making sure that blind parents aren’t discriminated against. That’s awesome, but I wish they’d been more forward thinking to include all recognized disabilities, or at least some categories, such as sensory and physical disabilities.
As it stands now, this extra state protection applies to only a small part of the disabled parent population. If you’re blind, and you’re an Illinois resident, you’re good, but, knowing that disability discrimination touches everyone, and that it can have disastrous consequences when children are involved, I can’t help wishing that the time and effort taken to draw up extra legal protections could have been used to create protections that are more wide-ranging.
On the hopeful side, perhaps the passing of this law will raise awareness among policy-makers and activists.
For more data on parents with disabilities in the United States, check out this post I wrote about the 2016 White House Forum on Parents With Disability. (Just an aside: It’s hard to imagine this forum happening in the current political climate.)
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:
(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?
An Open Letter to Ken Jennings:
A year ago, you tweeted “Nothing sadder than a hot person in a wheelchair.”
Yes, that was a year ago, about a million years in cyber time.
Let’s revisit this anyway.
There’s some important stuff here.
We still have ableism, and we still have loads of wrong-headed beliefs about disabled people’s sexualities. The difference is that more and more people are speaking out than ever before.
Like this lovely person:
Now, isn’t that hot?
Okay, maybe you don’t find it hot. You’re allowed. We all have different measures of hotness, though most of us don’t dismiss an entire group out of hand.
The main reason I’m writing you this letter is that you are, overall, a pretty clever guy, and your fame is built on your cleverness. Your fans depend on you to always have the right answer. So, it only serves everybody to unpack how not-clever this tweet was.
I figure that with what I assume to be your immense love of knowledge, you’d want to know the truth of things.
The truth, sir, is that the buzzer wont’ stop ringing; that’s how factually off-base you were here.
Basics first: You said you don’t think there’s anything quite so sad as a hot person in a wheelchair.
Personally, I think seeing hungry children or abandoned puppies or countries ravaged by war is much sadder than seeing anyone in a wheelchair, but okay, if you find that the saddest, you’re allowed. You might want to rethink that, though, especially since you already acknowledged that the Internet didn’t agree with this joke.
I’m also really shocked at your lack of imagination. You really think people in wheelchairs, no matter how hot (or not) you think they are, can’t or don’t have sex? Really? *raises eyebrows*
Maybe you’re thinking that what you said isn’t such a big deal.
After all, it’s not the hungry children, abandoned puppies, or war-torn countries I mentioned earlier.
You didn’t physically harm someone or swindle them out of their life savings.
A lot of times when people are afraid of something, they get defensive. And, you know what they say: The best defense is a good offense.
Actually, the best defense or offense is education and knowledge.
Nothing helps quite like the truth of things.
People with disabilities–these are real people you’re talking about. I know: I am one of them. I’m visibly disabled, though not a wheelchair user. People with disabilities are frequently seen as childlike, incapable, often even subhuman. Denying our sexuality is just one more way to deny our humanity. Denying our sexualities leads to pressing problems like thinking that disabled people don’t need sex ed, or that we don’t need sexual healthcare.
You were talking about people in wheelchairs, but I’m left wondering: Where does it stop? Do hot blind people make you sad? How about hot people using crutches or a walker? What about hot people who have more than one disability? How does it work if a person’s disability is invisible? If they’re hot, and you only find out about the disability later, is that sad too?
Business Insider called your tweet insensitive. I think it goes way beyond that. When talking about negative comments about disability and disabled people, words like sensitivity, compassion, and caring get thrown around a lot. I’d like to see more people talking about respect and knowledge.
It’s not primarily sensitivity you lack here—frankly, I don’t care all that much about your moral compass–(though your decency does leave something to be desired) but plain old-fashioned know-how. Sorry if that’s painful to read, but that’s just how it is. Okay, I’ll stop telling you you’re wrong.
Or, maybe the problem here is that you can’t imagine how someone who uses a wheelchair could possibly have sex? So little imagination, Ken! Really, I’d expect more creativity from a trivia buff/expert in obscure knowledge.
Look, I don’t care if you don’t find folks in wheelchairs hot, but you have a public responsibility not to share misinformation.
So, let’s have some basic sex ed, shall we? (Wouldn’t it be fun if game shows had categories on sex?)
Also, a person’s being in a wheelchair actually doesn’t tell you much about their physical abilities. It doesn’t tell you how they can move their bodies, which parts of their bodies they can feel, and it certainly doesn’t tell you what they like to do in bed. Some people who use wheelchairs are able to walk short distances, or are able to use their legs if they’re not standing up. It’s not always the case that people either walk or not-walk. And seriously, is being able to walk necessary for sex, anyway?
This leads us to another issue. It’s not our business to assume what a disabled person is able to do, and it’s not our business to ask, either.
The simple fact is: People with disabilities are sexy, with and without their mobility or other assistive devices.
Okay, caveat time: Not everyone is sexy in the same way, and we’re not all going to find the same things sexy. I wouldn’t want you to tell me who I should and shouldn’t enjoy or be attracted to, so I’m certainly not going to dictate that for you.
Let’s just say it this way: A wheelchair (or cane, or crutches, or oxygen mask) doesn’t take away anyone’s hotness.
Using these assistive devices also doesn’t make people think about sex or romance any less than they would otherwise.
You know, Ken, there’s a funny irony here. Ending up in a wheelchair, of any of the experiences that makes someone a minority in our society, is the experience most likely to happen to you. No, that’s not a threat. It’s reality. And, if it’s not something that lands you in a wheelchair, it could be any number of physical, psychological, or mental impairments.
Your skin colour, ethnicity, or country-of-origin aren’t going to change, so you’re not likely to experience any racial or ethnic discrimination you’ve not experienced before. You’re unlikely to have to live below the poverty-line (unless you make some incredibly bad investments) so being the victim of class snobbery or financial discrimination probably isn’t in your future.
You’re well-known for your smarts, but that wouldn’t much help you if you did become visibly disabled. I promise you people would treat you a lot differently. “Isn’t it sad what happened to Ken? He used to be so smart/capable/accomplished/successful/other positive attribute.” People who didn’t know you from Adam, who saw you on the street would be admiring, condescending, overly helpful or actively not helpful enough… They wouldn’t take the time to talk to you to find out how much trivia you know, or, if they did, they’d treat you like a clever child or smart puppy.
Does this sound bleak? I don’t mean it to. There are lots of awesome people who don’t see disability as such a big deal, who see the whole person, not just the disability.
Sadly, you’re not one of them.
Clearly, you weren’t interested in actively engaging with people to find out why they were so upset. You were comfortable with the Internet not agreeing with you.
That was your choice.
There were other ways to handle this, ways that show growth, learning, and humility.
General rule of thumb: Only people in wheelchairs get to make wheelchair jokes. The rest of us? We get to laugh along with them, but we don’t even get to repeat what we’ve heard, because they’re not our jokes to tell.
I’d like to invite you to explore the resource page here at Ready, Sexy, Able.
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?
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.
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.
Talking about sexuality and disability is a big deal. Until recently, most of what we saw in mainstream media were reports of disabled people being abused and assaulted, or syrupy-sweet feel-good stories about a person with a disability in a romantic relationship which (gasp!) included sex.
Sex, and disability, as experiences, are assumed to be entirely different – with the thinking that one involves only pain; the other, involves only pleasure.
As social concerns and lived experiences, disability and sexuality don’t seem, at first glance, to have much in common either.
Disability is tangible – in our faces; we can look around us and see the work that needs to be done—the policies that need to be changed and the barriers that need to be broken down. Sexuality – just is – except that it’s not. Sexuality is an individual concern—except that it’s not. Sexuality is filled with pain, confusion, lack of access and education, and endless potential just as surely as disability is filled with struggle, misunderstanding, lack of access, and sheer humanity.
We can’t continue to ignore connections between the experience of disability and the experience of sexuality. we can’t do this because sexual pleasure isn’t just about individual bodies’ enjoyment (people’s sexualities are so much bigger than the physical and emotional experience of sex), and disability rights isn’t just about breaking down barriers and gaining legal equality (it’s about individual lives and collective experiences).
In talking about sexual pleasure, we (or at least I) make a pretty natural leap to questions of sexual health, relationships, intimacy, safety and recovery from sexualized violence, and access to help with all of these. In talking about disability and access we need to include access and inclusion in recreation and social opportunities, as well as employment, education, and living conditions. To break that down, we who are disabled need to be able to access fun things—including fun sexy things. Not considering social opportunities as important means, ultimately, not considering disabled people as full and complete humans beings.
Continuing down this road of thought, I begin to realize how similar sexualities and disabilities, as topics of conversation, are to one another.
Consider how mention of both sex, and disability, in casual conversation generally make people feel—scared, nervous, eager to change the subject, full of questions they don’t feel like they’re supposed to ask or don’t know who to ask.
Consider the struggle people talking about sex or disability often have with language. Which terms do we use? Will we offend someone if we use this term over that one? What do all those terms mean anyway?
Consider the way we talk about both sex and disability– in hushed voices, in euphemisms, in quick side conversations.
As for talking about people with disabilities who have sex, or how sex is affected by disability? —Well, we really just don’t talk about that.
When we do, we (at least according to mainstream media) frame an intimate relationship involving a disabled person as miraculous or inspirational, or we expect the lives of disabled people to not include any sexual experience or desire.
Come to think of it: Isn’t this how we represent sex in our culture too—as something out-there and in our faces, or something we need to repress or hide at all costs, with nothing in between.
Whenever we do acknowledge sexualities, whether the actors or objects of those sexualities are visibly disabled or not, the representations rarely convey pleasure. Sexual pleasure is something we, as a culture, haven’t paid attention to, and in that silence is the assumption that pleasure will just “happen” by itself. The reality is that it often doesn’t happen because of, among other things, lack of education and fear many have around their own bodies. If you’ve learned that exploring your own body is a bad thing, or you don’t have the words to tell your sexual partner what you like, or don’t have access to sexual healthcare to help with pain or illness that interferes with your sex life, pleasure could be hard to come by.
Interestingly, meeting the access and inclusion needs of disabled people is also something that’s just thought to “happen.” Someone else will take care of it. Surely, one step into a building isn’t a big deal? It’s okay if that Web site isn’t accessible; someone can help you sign that form or do your shopping, right?
These kinds of assumptions limit people—real live people, not theories.
Sex and disability both get talked about as if they’re medical issues, only to be addressed by highly educated experts. There’s this strange thing many of us who talk about sex professionally encounter, which is the question of what medical or therapeutic credentials we have. Most medical professionals receive little to no training in the areas of sexuality and relationships; seventy-five percent of American medical students surveyed reported receiving less than 5 hours of formal training in sex and sexuality. Most medical and therapeutic professionals, including psychotherapists, only get anything greater than basic training (which I’d still argue is what is needed to cover all of the basics) if they actively seek it out.
Many people don’t get the education they need to make sound choices about negotiating sexual relationships and taking care of their sexual selves. Many disabled people don’t get the tools (often practical tools like technology, mobility aids, and accessible housing or workplaces) to live life fully and safely.
What I think we end up with, with both sexuality and disability, are realities that affect both individuals and communities. Not talking about these realities turn everyday experiences of sexuality, disability, or both, into the problems – sexual assault, unwanted pregnancy, sexually transmitted infections, abuse and neglect of disabled people, severe isolation among people with disabilities, to name a few – they’re already assumed to be.
What do we do? We talk, and talk, and talk some more.
We treat everyone like human beings. We avoid running in fear from mention of sexuality and from disabled people. We avoid shame around sexualities and belittling (which often looks like shaming) of disabled people
We look at the cool things talking about sexuality and disability do for our understanding of both.
Disability impacts sex, sex impacts disability, and the reality that people with disabilities can and do have a sexuality and have sex (and enjoy it) tends to be forgotten.
How’s disability good you ask? At the risk of sounding like I’m putting people on a pedestal, many people with disabilities have an awareness of themselves and what we need and want that other folks just don’t have, or, and please forgive me for circular logic, self-awareness other folks just aren’t aware they have. Apply that to sex, and to life in general, and some pretty amazing things can happen – like more sexual pleasure, fewer unhappy relationships, more confident people (sexually and in general).
Having a disability can also result in people needing to do sex and express their sexualities differently, hence breaking the mold of the popular idea of how sex “should” be done—something that can only make life freer, and more fun, for everyone.