Nov 062014
 

I first learned about Diane De Vries almost fifteen years ago when I was researching sex and disability (wasn’t much written about that then) and stumbled across this book. diane’s story was so amazing to me because I’d never heard people theorizing things like self-esteem, body image, and sexuality specifically around disability, and because the essay about her talked so candidly about how she navigated living with a body that not only behaved diferently, but looked diferent too.

Recently, I found this short documentary about Diane, showing diferent aspects of her life than those I first learned about, and in her own words, too!

Enjoy!

Nov 052014
 

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?

Last month was Domestic Violence Awareness Month. IN all the awareness-building, all the activism and solidarity online, I saw almost nothing about people with disabilities who are victims and survivors of relationship violence.

This absence is startling when you consider that people with disabilities are statistically more likely to experience relationship violence than nondisabled people. (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 sometimes loses touch with reality because of their mental illness, 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 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 this person has to be there. It’s impossible for any victim to truthfully answer the kinds of questions suggested here, if an abuser is in the room.

These are yes/no questions, though, and most people can find a way to indicate yes or no. It’s appropriate for a healthcare provider to spend time alone with all patients. 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 partner 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. 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 this study 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 distilled 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 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, 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.)

We’d also have a system in place for people of all abilities, because right now, people with disabilities don’t have equal access to the system we have for intimate partner violence victims/survivors.

It’s not all doom and gloom, and WTH is wrong with this world, though. My little anti-violence activist heart skipped a beat when I discovered these twoorganizations work specifically with people with disabilities who’ve experienced relationship abuse or other forms of interpersonal violence.

On that hopeful note, I’ll close for now (though I have at least another page worth of notes about things I’d like people to know about this topic).

Oct 232014
 

Last month, the American Academy of pediatrics updated its guidelines on providing sexual healthcare for adolescents, though the part of those guidelines validating that teens with disabilities have sexualities too didn’t get a lot of press.

yes, teens with disabilities do have sexual feelings, are interested in sex, and (mock gasp!) engage in sexual activity with themselves and other people.

It was strictly against the rules, of course, but I happen to know that the school for the blind I went to was teeming with horny teens acting on their horniness!

I wasn’t one of them, but I did hungrily, and a little guiltily, devour the three sex and sexuality books the school library had in Braille.

So, this week I’m sharing a piece from the depths of the Internet, written by a disabled teen, about her sexuality.

Cara Liebowitz is a powerful activist for disability rights.

She gave this interview on disability and sexuality four years ago when she was in her late teens.

Enjoy.

Oct 162014
 

Today is Spirit Day.

Talking about anti-bullying and anti-violence is generally more meaningful to me than turning everything purple. Plus, if I turned this post purple I’d probably break something!

So instead I bring you this 2009 post from brilliant and much-missed disability-rights activist Laura Hershey tells the truth about violence against people with disabilities.

Is there such a thing as a hate crime based on disability?

When President Obama signed the Matthew Shepard and James Byrd, Jr. Hate Crimes Prevention Act into law last month, much of the excitement centered around the inclusion of sexual orientation. I too am moved that federal protection has now been extended to LGBT folks attacked by those who cannot tolerate our different expressions and gender and/or sexuality.

Equally importantly, the bill also covers crimes targeting people with physical or mental disabilities. This aspect has received less attention, possibly because many people find the very concept of disability hate crime difficult to fathom. Who could hurt the handicapped? What kind of a dirty low-life would sink so low as to prey upon a helpless disabled person?

Ironically, these common questions reflect social biases which actually contribute to violence against people with disabilities. When we are lumped into a stereotype called “the handicapped,” and seen as easy targets, passive and vulnerable, then perpetrators are more likely to seek us out and to get away with their offenses. On the other hand, when we are active and respected in our communities, we can count on some natural protection: visibility, connectedness, and legal recourse.

Hate crimes targeting disabled people do occur.

Here’s the entire post.

Note: If you want to turn things purple, please do. I understand it’s a really expressive colour. Just please don’t substitute purpling your world for talking.

Oct 102014
 

Today is World Mental Health Day, and I’ve been reflecting on how disability discrimination affects mental health.

Yes, there’s stigma and discrimination against people with psychological illnesses or disabilities; there’s also stigma and discrimination against disability in general that, I believe, can exacerbate, or even cause, short-term mental health crises or chronic or episodic mental illnesses. IN other words, I think the discrimination people with physical, developmental, or other disabilities experience increases our risk of developing psychological disabilities.

I haven’t yet been able to find studies that looked specifically at the effects of discrimination against people with disabilities on mental health, but we do know that disability stigma result in people not seeking treatment, withdrawing from daily activities, and denying the symptoms of any type of illness. Discrimination against people with disabilities can lead to exclusion from educational, social, and employment opportunities. resulting sometimes in experiences of isolation. These situations are also a ripe breeding ground for warning signs of mental health difficulties being ignored, minimized, or unnoticed by the person experiencing those difficulties or by their family or friends.

Many people with disabilities experience multiple types of discrimination, including hate crimes, discrimination in a school setting, harassment in public spaces, just to name a few.

I was able to find studies correlating the experiences of racism and homophobia with experiences of mental health disturbances ranging from chronic stress, to anxiety, to psychosis. I know we can’t use these findings as evidence that people with disabilities will have the same experiences as people of colour or LGBQ and trans folks, but they do set up a convincing—to me, anyway—picture of the impacts discrimination and stigma have on psychological well-being.

This overview of the psychological impact of discrimination against LGBQ and trans people cites research finding that LGBQ and trans folks who live in American states with laws that protect their human rights have a lower incidence of psychiatric disorders than do LGBQ and trans people in states that don’t yet have these laws on the books. The article pulls together a lot of the current data on discrimination and mental health for LGBQ and trans people, and is worth a read.

These
articles highlight the strong associations found between the experience of racism and the incidence of mental illness.

Because there is so much judgment of people with mental illness—so many assumptions that people with mental illness just “need to try harder,” are attention-seeking, or are crazy and can’t be trusted because of the illness—I think it’s important to say that none of what I, or the articles I’ve linked to, have said means that people who have not experienced large amounts of discrimination have no reason to experience mental health problems. Illness, of any kind, doesn’t discriminate.

Keeping this brief, for once, I’ll close with a link to an excellent blog post encouraging us to have less judgment toward, and more curiosity about mental illness.

Sep 252014
 

Dear Ken,

So, on Monday you tweeted:

Nothing sadder than a hot person in a wheelchair.

What’s most sad about this is that Twitter tells me (as of the last time I looked) it was “favorited” three-hundred eighty-seven times.

What I really want to know is: Why? Why would you write such a thing.

Are you feeling sexually insecure?

Did you think you were being clever? (Hint: You weren’t. If you need supporting research to back that up, here you go.

Are you skittish around wheelchairs? Sometimes people lash out when they’re feeling insecure. Many people in our culture have almost a “primal fear of becoming disabled”, so, don’t be ashamed if you’re afraid; lots of people are.

Yes, what you did was lashing out. No, you didn’t target anyone specifically. You didn’t physically attack anyone, or call them names, or undertake persistent verbal harassment.

What you did was much more on the level of a microaggression. Only, it’s on the Internet. The Internet has this habit of making things grow, taking away the micro and increasing the aggression. Plus, when you’re on a popular TV show for six months, have written lots of books, and are generally being a public figure, people kind of tend to believe the things you say. You wouldn’t want to steer them wrong, would you? (Yes, I might just be wagging my finger at you.)

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, and that’s exactly what you’ve done. You’re 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?

I spend a lot of time talking and educating about people with disabilities and our sexualities.

So, I’m here to tell you: Your statement about people in wheelchairs is just factually incorrect. So yes, you, the fact-maven, are steering people wrong.

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—at least for a few paragraphs.

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!

There’s really not a limit on what sex is, or how to do sex, for anyone
And, there’s no limit on what sex and sexuality can be for people with disabilities. Please pay particular attention to the first three myths, and the facts that go along with them.

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?

I’m not sure if you knew this, Ken, but people with a whole range of disabilities date and some choose to get married.

And know, these generally are not sexless relationships, as people often assume they must be. At least, couples in which one or both partners are disabled are no more or less likely to have sex, or have sexual issues, than couples in which both partners are nondisabled.

Just because you find wheelchairs to be impairments to people’s sexiness, doesn’t mean that other people do. I’ve heard that this sexy calendar of people with disabilities is “hot as hell.”(I’m blind, so can’t confirm that personally.

Plus, some people find other people’s wheels hot!

Sex with someone who has a disability can even be the best sex you could be having.

Or, maybe you’d like to try something a little more daring? Leroy Moore has reclaimed drooling, something seen as infantile and gross, something Leroy personally was encouraged to hide and feel ashamed about, as something sexy and intimate.

The simple fact is: People with disabilities are sexy, with and without their mobility or other assistive devices. Okay, I’m being a little hyperbolic; after all, not everyone is sexy in the same way, and we’re not all going to find the same things sexy. So, let’s just say it this way: A wheelchair (or cane, or crutches, or oxygen mask) doesn’t take away anyone’s hotness.

Perhaps it would help you to watch some people with disabilities talk about their sexualities Or maybe you’d like to see some positive and sexy images of people with disabilities.

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. You’re unlikely to have to live below the poverty-line (unless you make some incredibly bad investments), but you could well develop a mental, psychological or physical impairment, either temporarily or permanently. Most people consider able-bodiedness to be temporary, anyway. Research the abbreviation TAB if you want to know more.

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…

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.

I’ll finish simply:

Don’t do that again.

Take the tweet down.

Apologize. (Can you do so as elegantly as George Takei?)

And, if you’d like to know more, you’re certainly welcome to browse this resource list, and get in touch if you’d like to learn more.

Yours in knowledge,

Robin

Aug 112014
 

Update: George Takei has issued this classy, down-to-earth, articulate apology. I’m impressed by how he explains his actions without making excuses for himself (a delicate balancing act when you’re under word-fire from critics and fans), and by how responsive he is to learning and growing as a human being.

My favourite part:

The fact that I was surprised by the response the wheelchair meme received indicates that I do indeed lack knowledge, and some sensitivity, over what is clearly a hot button issue, and that I and others can take this as an opportunity not to dig in, but rather to open up to the stories and experiences of those in the disabled community.his “funny” play miracle, reimagining of Hellen Keller and Anne Sullivan’s story. As I said then, I’ve never seen this play, so can’t comment on its humour or lack thereof, but I maintain it’s not Savage’s place to use the history of a minority group he doesn’t belong to as a springboard for his dramatic efforts. Even if the presentation is funny (it’s theatre after all, and some might argue that the rules are different) the written injunction to the audience not to tell deafblind people about the play, because it’s offensive, really can’t count as a joke. That’s like hurting someone then saying “I was just joking!” in response to their pain. Oh, and if you actually say something will be offensive to this, that, or the other group, isn’t that a blatant admission of wrong-doing?

Elsa at Feminist Sonar sheds some more light on the “humour” in this play, which apparently includes a “hilarious” torture scene. Read down through Elsa’s post to see where she talks about Miracle; first she explains how torture of disabled people isn’t just a figment of Dan Savage’s (or anyone else’s) imagination. If you want to learn more about that, this article” has more detail.

So, now that we’ve recapped a little history…

Last weekend, George Takei joined the ranks of disability ignorance smoothed over with so-called humour. Granted, he didn’t invent this humour himself, but the fact that he shared the meme, and particularly the way he responded to people’s concerns about it, shows how little he knows about disability, disabled people, disability rights, and how little he appears willing to learn.

Michelle at Mommy Misadventures explains what happened, and why it was so troubling, in this open letter.

To be clear, I’m not furious with Takei. (I was seeing stars about Miracle for a long time, and that truly is a miracle as I can see nothing, not even light.) I’m more frustrated by his carelessness here (and, admittedly, unimpressed by his blase attitude), and by a still prevailing attitude that equality and decency around disability is something separate from equality and decency around anything else. Perhaps it’s too much to expect that someone who advocates for fair treatment of other minorities will at least be responsive when people point out stupidity, cruelty, or inaccuracy of a joke about a minority, even if he personally finds the joke funny? Perhaps it’s too much to expect that he’d understand the danger of perpetuating stereotypes?

Maybe it’s because I don’t drink much alcohol, but I don’t actually find this meme particularly funny. Or, maybe I don’t find it funny because, to me, a disabled person shopping—for anything–is just a normal part of life. Not only does this meme make the assumption that anyone who stands up from a wheelchair really can’t be as disabled as all that, but it also, I think, makes it a big deal that a person in a wheelchair would be shopping for alcohol at all.

As others have pointed out, by itself, a person standing up from their wheelchair could mean all sorts of things. Maybe standing up was painful or fatiguing for the person in the picture, but worth it to her. Maybe she stood to reach her beverage of choice because she could, easily and without pain or discomfort, but walking is painful, or even dangerous, for her. Maybe she did so because she didn’t need help, or maybe she did it because she didn’t want to ask for help and invite people’s attention towards her. Maybe she thought about asking someone to get her chosen drink for her, but then worried that someone might decide to judge her choices or lecture her about drinking alcohol or about the way she spends her money.

Disabled people, we worry about things like that because they happen to us on a regular basis. All you need to do is read the #AbledPrivilegeIs hashtag on Twitter to see the small and big invasions that can happen, sometimes multiple times a day—invasions that are frequently invisible to people who don’t experience them or don’t know to look for them.

Disability is hardly serious all the time. Sometimes it’s downright silly—to those of us who live it. We who are hard of hearing mishear things, sometimes with embarrassing and humiliating results, but sometimes in hilarious ways that turn into ongoing inside jokes between the hard-of-hearing person and their loved ones. People who can’t see (particularly before the advent of talking bar code scanners) sometimes open the wrong can or package of food with amusing results—sweetened condensed milk instead of chicken noodle soup, anyone?*
There are even disabled comedians, being funny, and talking about disability as only disabled people really can.

So, yes, disability is silly, but someone in a wheelchair who is able to stand to select the drink she wants to enjoy later isn’t silly; that’s just her normal. Shopping is normal for everyone.

Now, picture of a child who crawled into a fruit bin? That could be funny.

I think people don’t want us to ruin their jokes by explaining why they’re not actually jokes at all,

Jokes in real life are about things that are real and that are so ridiculous we couldn’t make them up if we tried. This joke instead makes something ridiculous out of a real event that really doesn’t mean anything at all except maybe (and maybe not) for the person in the picture.

When people tell you there’s a problem, I think it’s smart to listen.

A little bit of acknowledgement would have been nice.
Discrimination gets perpetuated by people continuing to say that something isn’t a big deal, or, even worse, that whatever’s happening is the right way.

This isn’t about fans not liking the joke. It’s about people saying: “There’s something wrong here.

Sure, no one likes having their activities and choices scrutinized, but that’s nothing new for celebrities, particularly those, like takei, who cultivate their public presence. Part of cultivating a public presence is being able to acknowledge when you were wrong, or when you made a mistake. “I didn’t know” is the oldest excuse in the book, but if it’s then followed by “…but I will learn,” there may be hope for humanity yet.

What I’m finding really frustrating about this trend, first with savage, now with Takei, is that we have two public figures, who’ve both been vocal about nondiscrimination and anti-bullying, who seem to not be getting that their public behaviors around disability are reflecting ignorance, and an unwillingness to learn. People look to these folks to find out what’s okay or not, both because people look up to celebrities (and, to be real, expect more of them than of the average person) and because these particular celebrities have, in diferent ways, made themselves authorities in advocacy and equality.

As far as I’m concerned, Takei and Savage can do anything they like in their personal lives (though I’d prefer that they not hurt people or animals, or pollute waterways) but people look to them as models for how to treat people, how to treat minority people, like people. This life, both that of the public celebrity, and that of the vocal anti-discrimination advocate, is one that both men have chosen and that comes with a social responsibility.

Whether we’re talking about It gets better or It’s okay to say Takei!, both Savage and Takei have been vocal about anti-discrimination and the harmful effects of discrimination. Do disabled people just not count? Judging from what I’ve read, perhaps not.

Andrew Morrison Gurza has made it clear that there’s an absence of disability-awareness in the gay community. Come on, dudes! Backing away from a guy in a wheelchair? If there’s that much fear and distaste, it’s hardly surprising that the advocates among you are ignoring and belittling disability.

Discrimination doesn’t exist in a vacuum, yet that’s how anti-discrimination efforts seem to be working. Disabled people, and some able-bodied folks who work with or love us, advocate for disability rights. Gay people, and some straight allies, advocate for gay rights… Substitute your minority group of choice.

Why can’t we move to a philosophical space where we all want to learn about each other’s struggles, and where they intersect with our own and where they differ?

I maintain that we will never truly meet any equality goals until we do this.

* Most blind people have a system for organizing food that we can’t readily identify by touch or smell, but like any system, there is a failure rate.

Jun 052014
 

What do touting the immensity of the clitoris and making recommendations on physical accessibility considerations for event organizers have in common?

At first glance—nothing.

I probably shouldn’t be telling you this, but as someone who talks about both sexuality and disability (separately and together) I sometimes, (okay, I won’t lie, frequently) feel like I’m having a professional identity crisis that’s never going to end. Grow up and devote yourself to disability and accessibility, I tell myself, or enjoy talking about sexuality and sexual pleasure. I don’t care which, but you have to pick one.

Disability is tangible; we can look around us and see the work that needs to be done—the policies that need to be changed and the barriers, any of them physical 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.

So, you see, I can’t separate the two. I can’t because sexual pleasure isn’t just about individual bodies’ enjoyment, and disability rights isn’t just about breaking down institutional barriers.

As a visibly disabled woman, am I not breaking down basic barriers of what is expected from disabled people, and what is deemed “appropriate” conversation, every time I publicly mention bodily autonomy or the nearly limitless potential we all have for experiencing pleasure?

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, leadership 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.

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 escape the conversation, 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 talk about it, 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 be devoid of 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 no happy medium?

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.” 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.

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 access it, 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. People with disabilities often find that medical and therapeutic folks are assumed to be the ones who have the most knowledge about our bodies and minds; they’re the ones who tell us what we are and aren’t able to do (though I’ve just recently learned that more than half of American medical school Deans report that their students aren’t adequately trained in disability or in working with disabled people Whether it’s through unsolicited assistance from a stranger on the street, or an officious pronouncement from a medical professional, disabled people are often not seen as being in charge of our own lives, and as the best experts on those lives.

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 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 get snuffed out.

How’s disability good you ask? At the risk of sounding like I’m putting people on a pedestal, many people with disabilities have a self-awareness born of necessity 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. Having a disability can also result in people needing to do sex 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.

May 022014
 

Looky–if you must, though I’d rather you didn’t–but please, no touchy!

If I made T-shirts printed with the above sentence, they’d sell like hot-cakes among visibly disabled people.

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.

Every time I leave my house I may experience being seen as less-than, or incapable, because I am visibly disabled. 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.

Every time I leave my house, I may have people 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.

Perhaps all this sounds like hyperbole, but I assure you it’s all true, and that when two or more visibly disabled people discuss the experiences they have in public spaces, there are frequent nods of recognition and rueful, sometimes amused, sometimes mirthless, laughter.

Recently, a friend blogged about walking down a street, training her service dog, while a woman—a stranger to my friend–tracked their 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 this grabby is accompanied by queries as to whether he needs help, but seldom is his “no acknowledged.

What never seems to arise in these commiseration sessions about our experiences as disabled people in public spaces is exactly what to call this collection of experiences. 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, 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 blown into.

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.

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.

Apr 132014
 

If we don’t remember history, we’re doomed to repeat it.

Yes, this is an old worn-out adage, and really should be: 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.

What I’m finding these days is that as more histories come to light, as the realities of more people are given a voice (hello social media!), some histories, some realities, are still left out.

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 populations. 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 populations discussing these realities aren’t doing their research. They’re not practicing what I think of as true intersectionality, which isn’t 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 we want to avoid speaking for) but so long as we use documented fact and anecdote, we’re practicing due diligence.

Can we include every single person’s reality? Likely not, we’re too individual, have too much amazing, beautiful diversity. 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, and it was particularly obvious as I was reading this position on proposed changes to consent requirements around sterilization published recently 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 makes only one mention of women with disabilities.

Any quick Google search will pull up references to online and offline resources about the unconsented/involuntary sterilization of disabled people. This is not> a hidden history.

This history of eugenics and this archive from the Chicago Tribune are but two publicly available online resources, available to any interested party with a computer and Internet connection.

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 we’re trying to bring into the fore.

While the 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 mention of 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 is that we would want it. This reinforces the idea that women with disabilities are not capable of the full range of reproductive decisions that other women—other people–are 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.

They pointed me to these groups:

Center for Research on Women with Disabilities (CROWD)
and The Initiative for Women With Disabilities.

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?