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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?

Mar 112014
 

You know those guides for telling you what to do when you meet a person with x, y, or z disability? Well, maybe you don’t, but please just take my word on this one. They’re full of crap. If you follow them, I almost guarantee (I have learned I can’t guarantee anything) you’ll wind up alienating the person instead of interacting with them. These guides actually really insult the intelligence of the people reading them, telling them they’re not possibly smart enough to figure out how to negotiate a possibly unfamiliar situation (I.E. talking to or helping a disabled person). It also forces them into the role of automaton as they struggle to remember what they’ve learned.

Actually, it occurs to me that guides for helping disabled people are just a further way our society reinforces the notion that we’re better off memorizing rules than developing our skills of reasoning, communication, and compassionate intuition.

Still don’t know what I’m talking about? Consider yourself lucky. Or take a look at these responses to such guidelines.
How to Talk to Normal People: A Guide for the Rest of Us

What To Do When You Meet An Able-Bodied Person

If you laugh while reading through these, as I did, that’s more than okay; they’re pretty ridiculous and I think the best way to deal with ridiculousness is to laugh. Sadly, this isn’t too far off the mark from what those of us with disabilities experience. I have personally served as Christmas angel or other ethereally inspirational being to many strangers, people who decided they knew all about me, and that I was of superior moral character, all based on my having a visible disability.

Thing is: We who have disabilities aren’t one-dimensional; our disability might be the most noticeable thing about us to others, but it is, for most of us most of the time, not what we notice most about ourselves. While it, depending on the nature of the disability, might impact how we run our day-to-day lives, it’s just one of many things we consider or think about. For example, someone who uses a wheelchair might have to plan the safest, most accessible route to the local knitting shop, or arrange for accessible transportation, or find an accessible knitting shop in the first place, but their focus is going to be on getting to that knitting shop to teach or take a class, or to buy goods with which to make holiday gifts or stock up for their custom-designed shawl-knitting business. The special arrangements they need to make to get to the shop don’t define who they are. Using a wheelchair and needing to find an accessible way to get to the shop is just one aspect of that person’s identity as a fibre artist, small business owner, yarn geek, or whatever their relationship to knitting happens to be. Once they get there, an employee or another customer engages our imaginary yarn geek in a question-and-answer session about their disability, that’s likely going to be a huge disconnect for them, since they’re not there as a disabled person, but as a yarn geek.

There’s no one thing that a particular kind of disability (or disability in general) can tell us about the person or people who are disabled in that way, about what they need and want access-wise, or really anything concrete about them at all. I heard a story once, from a blind guy who was sitting in on an accessibility training at his local library. The person giving the training suggested that if someone with a disability is in line at the desk to ask a question or get assistance, and there are others in line behind them, that the library worker should ask the person with the disability to wait until they’ve served the other patrons, regardless of their position in line. This blind guy spoke up, reciting his weekly schedule, and asked if the folks their thought that he had time to give up his place in line.

The accessibility trainer was operating under a few assumptions. 1. The person with a disability is primarily a person with a disability, not necessarily a busy parent, entrepreneur, community volunteer, etc. Following from that, they assumed it’s not unreasonable to ask a “person with a disability” to do something you wouldn’t ask another “person” to do. 2. That a person with a disability is necessarily going to need more help and take longer to serve than a person with no visible disability. This may or may not be true, but generally will depend on what they need, not on the fact that they have a disability. If their question requires extensive research, or a prolonged foray among the stacks, then certainly, they might be asked to wait, or to make an appointment to come back, but so would any not-visibly-disabled person.

In writing this post, and preparing the presentation I’ll be giving this weekend at Catalyst Con, I’ve gone back and forth with myself a lot on whether to give specific guidance or suggestions on appropriate protocol when interacting with disabled people. There really cannot be one protocol, for disability in general and for disabilities specifically.

The No. 1 rule really is, of course, just to treat us like human beings. If you wouldn’t walk up to a not-visibly-disabled person and ask how they got dressed in the morning, or how they can possibly take care of their child, don’t do it to someone with a visible disability. If you wouldn’t touch a not-visibly-disabled person without asking them, then don’t do that to a visibly disabled person. All of this is pretty obvious, yes?

Good.

While I would like to be able to leave it at that, I don’t think it’s ultimately helpful to do so.

I think that disability is something pretty foreign and frightening to a lot of people on a gut level. Some of this is because people find the prospect of losing any sort of functionality in their day-to-day life to be terrifying. There’s a cultural element too, as there aren’t a lot of good models in media for relating to people with disabilities, both around our sameness and around our difference. Come to that, there aren’t generally a lot of representations of people with disability in media sources, and what representations there are tend to hold us up as either inspiring (I wasn’t joking about that Christmas angel bit) or helpless. Even for those who recognize the one-dimensionality of these representations, I think they can still affect people on an emotional level, making disability seem foreign and difficult to understand.

The harder people try to understand disability, the more separated they become from the recollection that we’re just human beings like everyone else.

So, I present to you a small list of suggestions. While these read like dos and don’ts, they’re intended more as thought starters, and as “things you may not have thought of because they’re not part of what you encounter in everyday life. Honestly, I thought this list would be a lot longer than it ended up being, but boiling down the basics ended up being pretty simple.

Mobility Devices (canes, crutches, wheelchairs, service dogs, and so on): Do not touch someone’s mobility device without their express say-so. Our mobility devices are there to help us navigate, not for you to navigate for us. Grabbing someone’s service dog, or cane, or wheelchair, or walker, is akin to grabbing a car’s steering wheel out of the driver’s hands, and, depending on the mobility aid, could be akin to grabbing the steering wheel from a driver and kicking an ambulating person’s feet out from under them. Unless someone explicitly indicates that they want you to push their chair, or hold their cane for them, or otherwise interact with their mobility device to be helpful to them, it’s hands-off!

Yes, this also goes for guide or other service dogs. I don’t care how winsome those eyes are, it’s always best to ask before you pet and respect whatever answer you get. Touching someone’s assistance animal without permission is like touching them or their small child without permission.

“Can I pet your dog?” also needs to not be the first question you ask someone upon meeting them.

Communication: Small talk is the same whether we have a disability or not. Small talk (whether through speaking or other forms of communication) is about shared topics. Maybe you feel like you don’t know what similairities you have with a person with x, y, or z disability that makes their life and how they experience it different from yours. Really, though, the things you’d talk about with any stranger–the weather, latest movies, anything related to the space you’re in (if at school, questions or comments about classes are always appropriate)—is suitable. Disabled people are not that different from you, and while our disability might be of interest to you, trust me when I say that to us it’s more boring than talking about the weather!

If you’re talking with the person who has the disability, always look at them. If you’re communicating with them through a sign language interpreter, still look at them. Think of the interpreter is useful furniture. Their job is just to interpret what you’re saying, and, if the deaf or hard-of-hearing person doesn’t speak your language, to also “voice” their responses. That’s basically it. Here’s a great Wiki on communicating with a Deaf person through an interpreter.

You want to look at the person or people you’re talking to even if they can’t look at or make eye contact with you; for example, if the person is blind, or is physically unable to move their body in such a way as to look at you. Speaking as someone who can’t see, it really does make a difference when someone looks at me while talking with me, not out over my head, or at anyone I might have with me.

Our family and friends generally don’t speak for us, unless we ask them too. Even if a family member, friend, or personal support attendant (someone employed to help a disabled person do things they need help doing) voices for a person with a disability, or appears to be taking charge of the disabled person they’re with, it’s still courteous and humanizing to address the person. For example, if you want to know what someone wants for lunch, ask them. Regardless of who responds, it’s still so much nicer to hear “what do you want for lunch?” than “What does she want for lunch?” It’s also sound not to make assumptions about what someone might or might not understand just because they’re not verbal or otherwise not communicating with you.

If you keep that No. 1 rule I mentioned above in mind (always treat people with disabilities like human beings) at all times, you’ll be just fine!

I hope I’ve provided some food for thought here. If you have specific questions about interacting with people with specific disabilities, or have encountered situations you’d like some feedback on, please leave your question in the comments or email me privately so I can address specific concerns in this space.

Mar 032014
 

A lot of people worry about what language to use when talking about disabilities, and about people who have them. People want to be respectful, or at least PC. Some people want to protect themselves from what they see as hostile attacks when they use what we who have disabilities recognize as defamatory, hurtful, or belittling language. Others know that the language used means something, that words have emotional resonance and cultural meaning (sometimes multiple cultural meanings), as well as literal definitions.

What I’m about to tell you is not the final word on disability language. I’m not the expert on this—no one can be—and my aim is only to present some facts and theories for your consideration, and share what I find works for me both personally and professionally.

Many people are confused because the terms we are and aren’t “supposed” to use around disability seem like they change on a dime. These language changes are not random; the changing ways in which we use disability language is directly affected by a global community of people (or perhaps communities of people all around the globe), with various disabilities or impairments, and our growing voices and presences.

So, how do we figure out what words to use, especially if we’re not plugged into disability politics and activism?

I think we do this by changing our approach a wee bit.

I think we’re best off not worrying so much about whether we’re using the wrong words, or the latest PC terms, as whether we’re actually saying what we mean, saying what we want to say.

For starters, when talking about disability, there’s a tendency to talk about disability itself, or the people who have it, as one big homogeneous thing. This often comes out as talk of “the disabled” or “the blind,” or some other disability group. Honestly, I can’t think of too many scenarios in which talking about disability (or people with disabilities) as a whole would lead to anything close to accuracy. Also, and this is a biggy, we’re not “the disabled.” People talk about making sure the person comes first when talking about us—will flesh that more in a bit—and there’s no better way to make sure that our personhood is completely erased than by using disability as the sole way of addressing or describing us.

The other big problem with referring to disabled people as a homogeneous whole is that this is often done when talking about accessibility or inclusion. It’s always nice to know that we, as a group, are welcome somewhere, but if the practical needs of one disability group aren’t met in a specific place or situation, saying that this place or situation is disability accessible is misleading, and again, dehumanizing.

For example:

If we’re trying to indicate that an event is being held in a place accessible to people using wheelchairs and other mobility devices—that is, a space with no stairs (or that has alternatives to stairs), spacious doorways, et cetera—we need to say so, not just say that the space is disability-accessible. After all, if the event only offers sign-up sheets, educational materials, etc in printed form or there is no sign language interpreter or captioning service, the event is not accessible in general. Maybe it sounds like splitting hairs, but what I’m trying to say is that it’s important to indicate what kind of accessibility we’re talking about when we say “accessible.”

It’s also important to acknowledge the differences between disabled people, not to place disabilities on a hierarchy (as is sadly often done, and sometimes by people with disabilities ourselves) but as a way of acknowledging individual needs, and, I think, of acknowledging that the disability is just one part of the person.

In other words, the more specific we are in what we say and how we say it, we can end up placing less overall emphasis on disability, and more on the whole person. This is particularly true when we’re talking about access, as if people know up-front whether their access needs are more or less likely to be met, the more everyday their disability becomes. Access isn’t about doing special things, after all, but about levelling the playing field or balancing the scales.

What about terms for disability and disabled people? Do we say disabled people or people with disabilities? Is handicapped okay? We’re not allowed to say crippled, right?

What terms are acceptable will vastly depend on who you are, who you’re addressing, where in the world you live, and what you’re trying to do with your words.

Yes, “crippled” is generally not an okay term these days. But many disabled people call themselves crips (or sometimes “krips”) as a way to reclaim the word. As with most reclaimed words, it belongs to the population reclaiming it. Unless you personally have a crip identity, you’re probably best off not using the word in your writing, unless you’re quoting someone talking about their own crip identity or unless you’re writing or talking about crip theory/activism as a movement.

One of the newer terms—and the current darling of the PC brigade–is “differently abled.” Words cannot describe how much I personally detest this term. It is saccharin, infantilizing, dismissive, and ultimately meaningless. It’s meant to emphasize that we all have different abilities and strengths, but since it’s a term reserved for people with disabilities and not used to describe everyone else, it still promotes that there is a norm, and then there is other, and that we who have disabilities are other.

The term “differently abled” almost literally hurts my teeth when I think about it, hurts in the way that biting into candy that is just pure sugar and food colouring often does. I’ve personally felt the othering impact of this term. Once upon a time I was participating in a sex education event where I heard one educator blithely discussing things that were “good for the differently abled.” This person’s supervisor had just reacted negatively to my presence upon discovering that the person (me) they had previously just conversed with online was someone with a disability. As I listened to the talk of the “differently abled” I couldn’t help but marvel that I, a “differently abled” person, was sitting right there, feeling totally alienated from what was supposed to be an accepting, inclusive space.

I’m not the only one who feels this way about “differently abled,” though. In Twitter discussions with other disabled folks, the point was raised that politically correct terms have not affected any obvious change; we still have stigma against people with disabilities; we still have unequal access. I agree with this. I’d suggest that having PC terms allows people to skate through without giving what they’re saying or doing a lot of thought. See how this ties back to what I was talking about earlier—being sure to say what we mean, and say what will be most useful to others?

So, what terms do we use? I’m partial to people with disabilities and disabled people myself. Again, I also think that, wherever it fits, specifying which disability we’re talking about is useful.

So, is it people with disabilities, or disabled people? Depends who you ask. This is also a question that has gotten a lot of dialogue going.

Many folks with disabilities believe in people-first-language; that is, saying or writing the person before the disability. Others, me included, think that doing this 100% of the time is grammatically cumbersome and unnecessary. Some people, I’m still on the fence about this, think that the person-first construction puts more emphasis on the disability, not less. Others prefer “disabled people” as a way of asserting disabled identity and claiming disability pride, much as the folks who’ve reclaimed Crip, gimp, and other words-formerly-known-as-insults are doing.

Grammatically, it can get pretty awkward pretty quickly when we’re always saying “people who are disabled,” or “a person who is blind,” or “women with intellectual disabilities.” Because I’m personally not completely wedded to person-first language, and am also not completely opposed to it, I tend, when writing, to start by using the person-first construction, then use either one, depending on what grammar and sentence structure call for subsequently.

Calling people “differently abled” also puts the emphasis on the individual person. Disability is understood by many disability activists to be partially or wholly a product of society’s lack of physical or cultural accessibility to different impairments.

The Disabled People’s International explained the difference this way.

Impairment: is the functional limitation within the individual caused by physical, mental or sensory impairment.
Disability: is the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers. (DPI, 1982)

Viewed this way—and please do understand that there are many, many other models for understanding disability and disabled people’s experiences—we can think of the way “differently abled” has been embraced by the PC brigade as a societal shedding of responsibility. It’s much easier to talk about the words we’re supposed to use than to stretch out of our comfort zone, and do the emotional and practical work of having a fair and just society for everyone.

I’m leaving you for the moment (I’ll be bac, I assure you) with a few links sussing out some of what I’ve pondered here. If you’re wondering where to do more reading beyond these links, I’d suggest focusing your search on material written by individuals with disabilities or by disability advocacy groups. As always, if you have questions, thoughts, or would like to discuss anything I’ve written here, please don’t hesitate to contact me.

Autistic Hoya: How “Differently Abled” Marginalizes Disabled People
Wheelchair Dancer: Differently Abled — Disability Language On My Mind
Disability Definitions, Models and Terminology | Western Cape Government

Feb 262014
 

Web Access for everyone

Well, technically not for everyone. How we design our Web spaces isn’t going to make them any more accessible to someone who doesn’t have or can’t afford a computer or mobile device, or who doesn’t have or can’t afford Net access.

For those who do have net access, either through their own machines or through community settings such as public libraries, how we design our web spaces can very much influence how welcome people feel in the space we’ve created for them online.

Web space is real space, and as such deserves the same kind of attention and care we give to our in-person spaces when we invite other people into them.

Web space is different only in that it’s easy to invite nearly everyone in.

For those of us who provide information or are promoting our services around sexuality and relationships, making our Web visitors feel welcome is especially important. Many people come looking for what we offer from a place of fear or uncertainty; making their cyber-visit comfortable and easy not only ensures that they get the information they were looking for but that they’ll feel welcome to come back.

When talking about Web accessibility, we generally mean not whether someone can access the web as a whole, but whether different sites and services are usable by people with disabilities. In general, I’d say that accessibility translates to user-friendliness.

Accessibility is akin to making a physical space comfortable. When someone comes into a physical space where they feel comfortable and safe, where water and bathrooms are available, the people around them are pleasant, and what they need, whether for work or pleasure, is readily available, you can usually perceive the stress and worry lifting away from them. When the space is cluttered, people are unfriendly or disorganized, when it’s not readily apparent how to access what we came to that space for, the tension builds up.

Web space is the same.

Speaking as someone who uses access technology to interact with online spaces, I can frankly tell you that it can feel like a slap in the face to go looking for information or entertainment only to find that a site is confusing, tedious to navigate, or is designed in such a way that assistive tech freezes up as the page is loading.

Speaking of assistive tech, a lot of people think of Web accessibility as being primarily about and for people who use assistive technology, such as for people screen readers that read the material on a screen aloud or those who use speech input software that allows people who cannot use a keyboard or mouse to control their computer through speaking aloud.

Web access extends far beyond this, from meeting the needs of People with different cognitive or learning disabilities to ensuring that multi-media is made accessible to people with different sensory impairments (E.G. transcripts for audio material, well-worded descriptions for visual material).

Learning and cognitive dis/abilities are as wide-ranging and individual as the human population. Just as we’re not going to meet the needs or wants of the entire human population with what we provide in our Web spaces, we won’t always be able to be 100% accessible to everyone. There are lots of changes, both in basic Web design and in actual content, which will improve the general usability of our spaces.

You’ll find when reading Web design guidelines specific to cognitive impairment, two great resources for which are here and here that many of the suggestions given feel more like common sense than special accommodation. Plus, web tools have fantastic potential for making written and multi-media information more interactive and user-friendly than it would be offline.

Knowing the variety and types of access considerations can help you design your Web material to be as inclusive as possible. Doing this helps you reach more people, makes your work inclusive in action as well as word, and modelss what I’ll cheekily call good behavior for the rest of web space.

Having this information can also help you advocate on behalf of people who cannot access mainstream sites. Some forms of inaccessibility won’t be immediately apparent to you, but many will be once you know what to look for. Changes to ameliorate these forms of accessibility will generally also make the site more accessible for you. Large-scale changes (such as having the internet be more accessible than not) generally don’t happen on their own

Overall Web accessibility won’t happen until we all advocate together, until the general population is speaking up.

While you likely can’t make your Web material accessible to all populations, here are some things to consider.

If you’re setting up your own space on the Web, your best bet is to use the KISS model—Keep It Simpler Than Simple. Yes, I know that’s supposed to be Keep It Simple, Stupid, but I don’t hold with calling anyone stupid; the sole exception is if they’ve hurt me or those I love. You can use these guidelines from the W3C accessibility project to evaluate your site as you go. If you hire a web developer, make it clear to them that you expect them to familiarize themselves with these guidelines and follow them. Most of the guidelines are pretty clear to we non-tech types, so even if someone else is designing and building your site, you can collaborate with them on equal footing when making sure it’s accessible.

Bottom line? Making Web spaces accessible isn’t any harder than creating the spaces themselves. It may take a little more time to create alt-text tags to go with the screen shots on your blog. It may take more care to ensure that all your links are properly labelled. But doing these things, and others, is just part of good Web design.

If you have specific questions, please leave them in the comments or contact me directly.

Feb 202014
 

In the first part of my commentary on “porn for the blind,” I suggested that visual forms of porn don’t retain much of their eroticism if they’re made accessible. Erotic picture does not necessarily equal erotic tactile picture.

This isn’t because blind people’s erotic sensibilities are any different from those of people who can see (the continuums of what people find erotic are the same whether a person can see or not) but because the frame of reference is different. The whole of a visual image is more than just the sum of its parts.

Today, let’s find out what happens when people give audio descriptions of visual erotic material.

As always, I’ll be as objective as I can, but I’m only one blind person among many, so reactions may vary.

PornForTheBlind.org is a crowd-sourcing site at which people can upload their narrations of mainstream porn trailers from around the net. There are no guidelines for these descriptions, and no obvious forms of oversight for what is uploaded.

Listening to the handful of descriptions I was able to get through, I was bored to tears, and ready to go do the laundry or some other equally mundaine, non-erotic task.

This site falls into the category of interesting, not erotic. Describing what video porn looks like is not the same as consuming it as porn. The erotic elements are not there.

Granted, each narrator describes differently (there are no guidelines or even guiding principles for describers) so the quality varies. But, while some were narrated more helpfully than others, none of the descriptions floated my erotic boat.

What does lacking erotic details look like? No coherence, lots of ums and uhs, no emphasis on using sexy or descriptive language, no panache, and most of the narrators sound bored out of their skulls. The majority of the narrators speak in a monotone, and don’t seem to have practiced their spiel ahead of time.

Perhaps consequently, many of the descriptions are funny (not erotically funny), and the funniness is more painful than entertaining. The language used is often clinical at best, and missing colour supplied from adjectives, setting descriptions, and sexual slang.

this article explains the nature of the material on porn For the Blind this way:

…there’s something hot about the absolute amateur quality of the submissions, just like a homemade snapshot capturing real sexual energy can have more impact than a studio photograph of a professional model.

If there’s something hot here, I’m missing it. This writer may be confusing amateur with raw. (She is also, I suspect, assuming that everyone describes with the rich detail she uses; Her descriptions (which she provides links to in her article) are, so far as I can tell, the exceptions, not the rule.) She sounds like she’s enjoying herself, and does supply descriptive detail.

There is definitely something raw about the porn being described, but the descriptions lack “sexual energy” and are so stark E.G. (“there is a man lying on a couch; a woman is on top of him; they’re having intercourse.”) that any raw sexiness is edited right out.

Again, we have a situation in which making the visual genre accessible to people who can’t see strips much of the erotic appeal out of the content. With Tactile Minds, I assessed part of the problem as being the presence of too much stylized detail. With Porn for the Blind, I believe we have too little.

were the narrators of these clips to script their narrations, using words which set the stage and describe the mood of the activity as well as what is happening, I think we’d have more of that sexually raw content available in the audio. As it is now, we’re just hearing what happens on the screen. This is not the same watching experience as that which people watching it firsthand get; They’re absorbing the mood of the setting, the characters’ actions and body language, all with their own concepts of what is sexy informing their reactions. While word choice in narrations would necessarily influence the hearer’s perception of the scene (we’d be getting the narrator’s perception of what’s happening) it would add more in the way of interest and appeal than what is currently there.

So, the description I quoted above might then become: “A man is reclining on a leather sofa; he lies still as a woman straddles him and vigorously fucks him.” or, it might read: “A man reclines on a leather sofa, arching his hips up towards the woman who straddles him, her long hair brushing his chest as their pelvises rock together. (No, I’m not going to sign up to describe porn any time soon, but hopefully you get the picture.) :)

It may be too that this genre of porn really cannot be narrated. Listening to these descriptions reminded me of the time I watched a full-length artsy erotic film with some friends, and the machinations they went through to describe to me what was happening on-screen left all of us in peals of laughter. The film was essentially a montage of elaborate sexy scenes that switched about every minute. The scenes in a 30- to- 45-second trailer flip even more rapidly, and with less context, than those in a full-length film. Keeping up with these flips, plus supplying evocative information, is a challenge for any person trying to describe, and if it is going to be done, should probably be done by someone who has experience with providing audio descriptions.

So, in short, Porn For the blind is an interesting exercise the result of which ends up pretty far away from the intent.

Conclusion: Not erotic, not entertaining, and (because of the generally inexpert description) not even overly educational as to what happens in porn.

Next time, a review of a site with exclusively audio content.

Feb 132014
 

Next month I’ll be giving a presentation at catalyst Con on the Nuts and Bolts of Accessibility. I’m super-excited about sharing this knowledge with people in sexuality fields. It’s an exciting balancing act; walking the tightrope of educating while not instructing. In putting this presentation together, I’ve worried a lot about how to not make it sound like there’s just one way to serve the needs of all disabled people, or even all people with one kind of disability because there’s never just one way, beyond the one way of being respectful, caring, and treating all people like people.

Yet, one way is often how it’s framed, whether an event site is labelled “accessible” without specifying for whom, whether a sex toy is touted as being good for the “differently abled” (that term is like nails on a chalkboard for me, but I’ll explain that in another post), or some other all-encompassing statement.

Over the next few weeks I’ll explore here how we can talk about disability and accessibility both inclusively and expansively.

The nuts and bolts of accessibility aren’t just one thing, and they’re not literal. I won’t be handing out monogrammed Allen wrenches at the presentation to go with leaflets proclaiming “10 steps to make your service accessible.”

But nor is accessibility wholly theoretical.

Much of (though certainly not all of) being inclusive of most minority populations falls under the umbrella of developing compassion, recognizing and working with prejudice (our own and others), challenging stigma (our own and others’), and specifically not dictating what people should do with their lives (sexual or otherwise).

Making our spaces and services available, however, very often requires us to change what we do, not just how we think or act. It’s that “what to do” part of it I want to help people with.

I’m excited about talking to people at Catalyst, in particular, I think sexuality professionals are already perfectly positioned to incorporate accessibility thinking and action into our work. We’re already supporting people around deeply stigmatized parts of their lives. We already work with people as individuals and reject one-size-fits-all approaches.

The balance here is maintaining that individualized approach—not all people will need or want the same kinds of accommodations or assistance–while bringing our spaces and services in line with accessibility guidelines.

Accessibility is more of a practice than a philosophy.

We can be as inclusive of disabled people as we want, but if our Web sites look like so much nonsense to a screen reader, or our business is at the top of an entire flight of stairs (or even just one step), or the group activities we’ve planned for our empowerment retreat require listening, reading, or moving around, there will always be a group of people, or more than one, that will be excluded by the services we have to offer.

While what we have to offer cannot always be accessible to everyone—a painting class isn’t going to be much use to a blind person (though it can’t be assumed that all visually impaired people can’t engage in visual arts), and a talk deconstructing feminist philosophical writings might not be comprehensible or enjoyable to people with certain intellectual disabilities—most of us have services that can be tweaked to be available to pretty much anyone who might need or want them.

Establishing an accessibility framework or universal design of our programs or services means that any tweaks for individual customers or clients are just that, tweaks we’d make for any individual because of their marvelous individuality.

One thing I plan never to do, or at least not without a lot of thought and self-questioning first, is run disability simulations. A common disability awareness tactic is to have people don blindfolds, or move around in wheelchairs, supposedly to give them a sense of what it’s like to be blind or mobility impaired, or any other disability they try to simulate.

This is one of the most overused, and, in my opinion, useless and even harmful, “awareness” strategies.

We cannot learn what it is like to be another person, to have their feelings, experiences, histories by taking on one aspect of their existence for a short period of time. These so-called awareness activities simply give the experience of what it’s like to be oneself, without the senses or abilities one usually relies on. Any fear, nervousness, or trepidation a person feels cannot be attributed to the disability in general or to people who have that disability, but to their experience of temporary loss. Put more clearly, your experience of suddenly not being able to see your surroundings is very different from my experience interacting with my surroundings as a blind person, something I’ve done for twenty-eight years now.

What immersion exercises like these can do, I think, is make people more aware of environmental barriers.

To take another context, whenever I read about
We don’t need to do special exercises to develop this awareness. Understanding what being in a wheelchair in your place of business is like could be as simple as wheeling yourself around on a wheeled office chair, not to see what that is like on a feelings level, not to claim any sort of kinship with the experiences of people who need to use a wheelchair all or some of the time, but to see if you can still reach things, move through doorways, get to all parts of the room or building—in short, can you do everything you could do if you were walking?

I think impairment-immersion exercises are about as useful for raising awareness of the human condition as, say, homelessness tourism is for understanding homelessness. Spending a night in a shelter or hanging out with homeless people pretending to be just one of the guys can’t give one the sense of the days, weeks, months, or even years of being homeless (not to mention the days, weeks, months, or even years of circumstances that led up to that homelessness). All it can do (and this is a pretty significant all) is give politicians, and other decision-making folksa sense of how the services work, and of how society in general works for (or as is usually the case, against) homeless people.

When people do supposed disability immersion exercises, the response is often nervousness, titters and laughter, and a general sense of either silliness or disorientation. There are more respectful ways to break tension, and more useful ways to start dialogues and promote change. Much better, I think, to have intelligent conversations and use creativity from the vantage points we already have to understand our spaces and activities differently.

Stay tuned for more thoughts, and a few tips for starting to think about practical accessibility concerns.

Dec 202013
 

My ire was roused recently when reading about Dan Savage’s artistic venture, Miracle, a retelling of Helen Keller’s story. So that I don’t have to recap, I’ll let you read about it for yourself.

Yes, I know. I’m a little late (at least a year) to the game hearing about this, and later still talking about it. I needed time to gather my thoughts and calm my pounding heart of anger and disbelief. I needed time to think about whether I wanted to speak out against the work of someone who is such a publicly lauded member of the sex ed community.

I’ve taken that time, and I have no choice, per my sense of integrity, but to say what I think and how I feel. And, after all, Miracle was hardly educational.

Oh, and I’m still angry.

Furthermore, the broader issue here is timeless and one that isn’t discussed nearly often enough–how we talk about disability, and who gets to do that talking.

It’s pretty clear to me, with the recent, highly publicized debacle of the sign-language-interpreter-who-wasn’t and the ignorant, ableist theories, beliefs, and attitudes that have been voiced in response, that inclusion and acceptance of people with disabilities–in all spheres–still needs to be talked about. (There are also some pretty hefty concerns with how mental illness is being discussed around all of this, further complicating the disability discussion. While we only have part of the story, I suspect, from what we have heard, that this man should never have been put in the position he was in, for his sake as much as for anyone else’s. The South African government’s responsibility to ensure that it was hiring a qualified interpreter–preferably more than one–for deaf people’s access to information cannot, to my mind, be disputed. Yet, that’s what some people seem to want to do.)

All this to say that we’re not anywhere close to being done with the need for speaking up, clearly and often loudly, for how people with disabilities are perceived, included, and represented publicly, whether that’s in the arts or at an internationally important event. It also means we have to speak clearly, and often loudly, about the words and actions around this inclusion and representation.

————–

presumably, Miracle is supposed to be humourous. A discussion of the ethics and respect lacking in the mockery (no matter how artful, and no matter how humourous”) of a population one is not a member of would fill pages. Minority humour is live and well, and must, by virtue of respect, and of an inner knowledge of the workings of that minority group, be left to members of that group. Attempts at humour by people not belonging to that minority group smack of power, of appropriation, and of mockery. I think we call making fun of people for their differences bullying.

From an artistic, as well as human equality perspective, any humour not informed by the group the humour is about is bound to fall flat. Humour, as with everything else in life worth knowing about, requires thoughtfulness.

Since I haven’t seen this play, I’m not in a place to evaluate its humour objectively. I don’t like what I’ve heard, though, and think that it likely appropriates something the playwright has no knowledge of and views it through the lens of something he does know. Viewing someone else’s experience through our own lenses usually yields a mirky, and incorrect, image.

Helen Keller’s story is powerful. Through finding a way to transmit language to a child who could neither see nor hear, Anne Sullivan helped that child transform her life, and paved the way for other people to take hold of their lives in similar ways. That’s powerful, but not superhuman. Ms. Sullivan solved a problem for Ms. Keller—how to communicate—and assisted her with interacting with the rest of the world who didn’t communicate in the same way. The rest was up to Ms. Keller. Indeed, the story of what Ms. Keler did as an adult is at least as interesting as her childhood.

Most retellings of “Helen Keller’s story” leave her later years out. Also left out are the problems both Helen and Anne faced throughout their lives, not only individually, but in their interactions with each other. Very often, their story is told as “the Helen Keller story” not “the story of Helen Keller’s life.” See the difference? One is her story, the story other people put onto her; the other is the real story, nothing left out to make it more palatable or sensational.

While Keller and Sullivan’s story is often overdramatized and simultaneously oversimplified, it’s a pretty amazing story in itself. It’s not a story that anyone has the right to appropriate. Sadly, too many people have done so far too many times, though never, to my knowledge, in quite the way Miracle does.

What really rouses my ire about Savage’s play—and what I’ll talk about here–was the sign that was apparently posted above the stage. Ironically, if I had been to see the play, I’d not have known about this sign unless someone had told me about it, since I can’t see.

It said this:

This play will be deeply offensive to the deaf/blind community, so please don’t tell them. Keep your hands shut!

Really? Seriously? Someone thought it was okay to say this in public? A whole bunch of someones agreed with this decision? No one, from the actors, to the stage hands, to the theatre manager, realized that this crosses the limits of human dignity? In any other context but an artistic one, this sign would be seen as discriminatory.

I’m ordinarily quite gentle, too gentle, often too willing to give people the benefit of the doubt. Too many times I’ve been told to not object to someone’s disrespect of me as a disabled person as “They meant well.” Or “They don’t know any better.”

I’m not feeling particularly gentle this time.

Dan Savage is not, so far as intellect goes, a stupid man. So, he did know better, and, I’ve know doubt he did mean it—I imagine it’s “just a joke.”)

“Just a joke” is a worn out cop-out for saying something that shouldn’t be said.

“Just a joke” is a rickety bridge between the speaker of the “joke” and what they’re actually saying—a way for them to release responsibility for the true meaning of their words.

Suggesting that information be withheld from anyone is not a joke.

In the interests of full disclosure, I’m blind and have a bilateral hearing impairment, though I do not use sign and can usually hear what is said to me. I have friends who are deaf-blind and use sign, a computer, or a mobile device when out and about to communicate. So, this is personal for me, but I’d like to think that those for whom this is les personal could still know in their minds and feel in their guts that even the suggestion to withhold information is just not okay—and certainly isn’t funny.

I’d like to take away Savage’s (and anyone who agrees with him) mobile phone, his car keys, and his computer, and see how he feels about suggesting that communication should just be kept from anyone intentionally. I wonder if he’d think it was funny then?

Savage has likely never, as an adult, been denied information because someone else didn’t think he needed to know it. He’s likely, at least not in the computer-age, never had to solely rely on another human being for information.

To suggest that someone keep any knowledge from someone else who otherwise wouldn’t know or be able to access it is disgusting in the extreme. Think, for a moment, what it would be like if someone filtered what you knew through a screen of what they thought you needed to know. This information could include anything from the specials posted on the chalkboard in your favourite restaurant, to the fact that the people behind you are talking about you because they know you can’t hear them, to the plans everyone is making for going out, plans they’re conveniently leaving you out of. This can also include things like the entirety of what your doctor, lawyer, or financial advisor just told you. Get the picture?

Well, people do that to children all the time, you say. Yes, but disabled adults aren’t children! I’m also not a fan of keeping information from children anyway, though do recognize that information sometimes needs to be doled out differently based on cognitive and emotional development. Even then, I’m a fan of sharing and adapting the information in a cognitively-appropriate way, and not of willfully keeping information secret.

No, this isn’t like talking to children. We were all children once. We all had the experience of growing up, of having adults filter what we knew in one way or another.

No, what Dan Savage is talking about here is keeping information from adults because they might be offended by it. And…if they’re offended by it, that might mean that people will say he shouldn’t have written the play in the first place.

Oh, pardon me…I forgot. The whole thing is just a joke, including that sign.

Ha! Ha! I mustn’t take things too seriously…

Except for that part where it makes a joke of something that really happens to people, the withholding of information—something that denies their humanity, limits their options, and, depending on the information in question, puts them in danger.

I still find it ironic that I wouldn’t have known about that sign if I’d gone to see the play—unles, of course, someone had told me about it. I would have been ignorant, not of the play’s offensiveness, but of the excuses around that offensiveness.

I’m not the only one expressing these concerns. Given Savage’s work around the needs of young people, I think this young disabled lesbian’s words are particularly important. What she has to say about this play and its broader implications for Savage’s work and her own place in the world is worth a read, or two, or three.