Apr 222014
 

Okay, confession time:

A year ago I would have told you that I hated watching Law and Order: Special Victims’ Unit but that I couldn’t help myself. I would have told you that SVU WAS my drug, my guilty pleasure. The more I watched it, the more I saw to find fault with, yet the adrenaline-rushing, nonstop drama kept me hooked. I’d sit, watching episode after episode on Netflix, eating organic string cheese and getting high on having my emotions tweaked every 30 seconds or so.

An episode in which Detective Benson goes racing after an assault survivor, urging her to stay at the ER, get examined, and report her assault because “what if he does it to other women” was what finally broke this compulsive watching cycle. That particular episode morphed into a quite fascinating mystery that had nothing to do with sexual assault, yet that scene stayed with me. I felt the horrifying, traumatic unfairness of it.

Theoretically, I understand the concept of gathering evidence from survivors that may lead to getting a predator off the streets (or out of the boardroom, or away from schools), but… We all should always get to decide what happens to our bodies, including being able to decide how we talk about what has happened, what is happening now, or what we think, fear, or hope will happen in future. Our bodies are ours,and at no time is this more important than after a violation.

There was a time when I thought SVU was revolutionary, enlightening people on various gender, sexual, and social issues. It couldn’t be a bad thing, I thought, that the realities of sexual assault, domestic violence, and trauma were being emphasized.

Another but…

Forty-four minutes (that’s without commercials, some episodes are as short as 40 minutes) is not enough time to deal with any complex issue adequately, especially when such dealings are interrupted by the necessary plot twists, emotional outbursts, inter-character conflicts, and the like that make up popular nighttime drama. So ideas become skewed, fact becomes conflated with fiction (E.G. DNA results are rarely available as quickly as the show implies), and people wind up knowing little more about the social issue being tackled than they knew before they started. Sometimes, they know even less, or gain an unhealthy perspective.

In my life as a crisis hotline volunteer, and in my personal life, I’ve spent hours just doing the emotional support part of sexual assault response for one person at a time. It’s not easy; it’s not quick; it rarely involves sudden revelations which make everything clear and help details fall into place.

Having someone disclose also doesn’t mean that you can then, as a support person, prevent any further assault from happening. I couldn’t, and it took a lot of healing before that stopped haunting me every day. Even as I write this, the heaviness of that burden returns for a brief visit. I couldn’t stop assault, and neither can the police always do, as assault often happens within complex family or social systems which victims are afraid to break. Many victims are reliant on those who abuse them for financial or other resources, and social services are almost never as quickly mobilized as SVU IMPLIES.

The dramatization of pain, of violence, of terror numbs people to the reality of victimization, the gut-level, tear-wrenching, fist-clenching, body-cringing reality. I feel a little nauseated when I think about the emotional titillation, the morbid fascination, people have with violent dramatic portrayals on TV or in movies.

The portrayal of the investigative process is not only misleading, but is set up, I think, in such a way as to minimize the toll of that investigative process on the person who has experienced the assault. Have you ever seen, up close and personal, the evidence discovery kit they use after someone has been sexually assaulted? I have. During my training as a sexual assault hotline volunteer, I got to see a bag full of collection items—and that’s what they are. Syringes of various sizes with various tips, tweezers, swabs and little baggies. I don’t mind telling you I’ve never been assaulted, but I can tell you with almost complete certainty that I wouldn’t want to experience the invasion of a rape kit afterwards. That’s not to say that I wouldn’t do so, only that I wouldn’t want to.

So, to see detectives on SVU calmly asking questions while the survivor is being examined messes with my head. I don’t know whether this is common practice in real-life, but I just feel, on that gut-level, like it’s more violation. That examination needs to be a time when a survivor is supported by a trusted friend or family member, or a sexual assault advocate, or to be alone with the medical personnel if they choose.

It’s not just the treatment of sexual assault that bothers me.

I’ve never seen an episode in which alternative sexualities weren’t attached to criminal or disturbed activity in some way. Oh yes, they’ve got the gay and lesbian thing down just fine (for the most part), but anyone who enjoys kinky sex, or swinging, or group sex is fair game.

There was the episode in which a murder victim was found to have frequented a sex club. This “promiscuity” was explained by the way her abusive father had oversexualized her as a child. This wasn’t an isolated incident either. Whenever someone is found to have an association with alt sexualities, including in private spaces such as home or club, the detectives’ suspicion levels elevate.

In reality, many people who enjoy group sex, or swinging, or any other sexual practice outside of the rather limiting norm set by our society are doing so in healthy ways. They’re not working out childhood traumas. This isn’t to say that some haven’t experienced those traumas, only that they’ve worked them out in other ways, are aware of possible triggers, and are playing sexually for healthy reasons (like wanting to have fun). People with sexualities seen as alternative run the same gamut of personalities, professions, quirks, and personal life histories as anyone else. Many people assumed to be following sexual norms—aren’t, and are none the worse for not doing so.

Another episode I recall took this even further. A suspect or a witness (I don’t remember which) was goaded into telling the truth by detective Benson, who, after learning that he enjoyed submission and humiliation inn his sexual play, and had payed for these services, gave him orders and called him names during the interrogation. (And, of course, he fell for it hook, line and sinker. That’s TV drama for you!) It’s almost (but not quite) laughable that this man’s fetish was assumed to be his overall trigger; in other words, most people who enjoy submission, humiliation, or both in sexual contexts won’t just automatically respond to those triggers in everyday situations (if interrogation by the police can be considered an everyday situation). Again, too, a person’s sexual needs or preferences don’t automatically indicate criminality unless they’re acting them out on children or on anyone who hasn’t consented.

Over the years, many people have talked about the good SVU has done. I think that, at the beginning, there was more attention paid to gentleness and respect for the painful complexities of sexualized violence. As more characters were added, and the drama quotient was elevated (c’mon! Did we really have to have the Olivia-Eliot attraction subtext thing?) that attention to detail faded, or morphed into focus on the salacious parts. A good story has taken the place of attention to realism and humanity.

I don’t doubt that mariska harjitay’s Joyful Heart Foundation, and the other work she has done, has does some good. There’s very little in life that is truly good or truly bad. I don’t doubt that many women have written to harjitay to share their own experiences of assault. Any representation that isn’t wholly victim-blaming (in early episodes Harjitay’s character calls out victim-blaming quite frequently) is going to help someone feel safe enough to reach out. The injunctions from attackers, and often from society, to keep silent about assault, to keep secret, eat away at victims and survivors, and anything that helps at least one person isn’t all bad.

Much of harjitay’s work has been to clear the backlog of rape kits that has built up in state laboratories, so that more evidence can be processed and more people, theoretically, can be brought to justice. Again, theoretically, (since I don’t know of any recent case in which this has happened) processing all this evidence could also identify serial attackers, which would lead not only to mdealing out justice (whatever justice really is) but to crime prevention.

For justice to really be served, though, the criminal justice system needs a major overhaul. We need to see more work done on prevention, less vilifying of the victims, more vilifying of the crimes. We’ve not yet moved past the time and space in which people who’ve been assaulted aren’t blamed or bullied, in which their sexual histories, or choice of clothing, isn’t used as evidence in a courtroom, in which prison sentences for sex crimes are longer than those for burglary, and aren’t suspended based on time served before trial. (Yes, usually I’d find you references to cases where any of these things have happened, but it’s honestly just too depressing so I’m going to ask you to do your own research this time.)

There’s likely more I could write, but since I haven’t been watching SVU lately, except for the occasional viewing when visiting family, I don’t have any more episodes to deconstruct.

Ultimately, I just want to leave you with this thought (which could be applied to many other forms of entertainment besides SVU): We cannot trivialize strong emotions in TV drama. WE can never forget that sex crimes (or other violent crimes) can happen to all of us, at any time—that most of us know people who have been victimized.

This is real life, people.

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 242014
 

I’d like to share some thoughts that have come up for me around the Nuts and Bolts of Accessibility presentation I gave last weekend at Catalyst Con. Though I usually refrain from posting something here that is quite so meta. I think what has come up for me around presenting this topic is just a continuation of what I’ve been talking about up until now—sex, disability, accessibility, and the intersections between and ethics around all of these. As such, I hope it’ll be helpful for me to introduce my meanderings to the wider world.

Now that it’s over, I can say publicly that that was the first time I’ve given that presentation. I didn’t really know how a presentation on accessibility would go with the Catalyst crowd, a crowd of educators, bloggers, and other professional and laypeople who talk, write or think about sex and sexuality.

The marvel of social media is that I have a whole trove of tweets people made during the presentation to help me see whether or not this material landed. These tweets also helpl me figure out how to improve and expand on the material next time I present it. It’s fascinating, and a little other-worldly feeling, to have a real-time archive of what did and didn’t resonate with the audience. Thank you tweeters! Thank you also to Catalyst, for without the space, and the structure of the conference, I wouldn’t have been giving that presentation in the first place!

The process of preparing this presentation was personally and professionally illuminating. One of the things that can happen when one is, by necessity, focused on a daily basis on making sure one’s own access needs are met, is that the access needs of others become, personally-speaking, less relevant. Researching the needs of people with disabilities unlike my own has made me a more aware, and more knowledgeable, person. Other people’s struggles and needs do intersect and parallel mine, and I can–and really need to–be in solidarity with the folks who have those needs.

I’ve become more aware, too, of disability politics. Previously, my understanding of disability politics has been of the activist side–what some people might call the radical side. We need that activism; we need the people who use their strong voices, articulate words, and persistence to affect lasting change. We also need the love and connectedness I’ve been seeing in my reintroduction to disability activist politics. This is one example of what I mean—a note of solidarity that makes me cry, and makes me a better woman—personally and professionally.

This learning played out last weekend.

As a presenter, one of my responsibilities is making sure that as many people in the room as possible get what they need from my presentation. Not all may agree with me, not all may get what they wanted, or what they thought they were going to get, but I have to at least make sure, to the very best of my ability, that they’re all getting what I’m putting out there.

One of the participants in last week’s presentation is Deaf. This person was also at a presentation I co-presented about a year ago. It wasn’t until after that presentation that i learned this person had been there, and that they had primarily accessed the presentation through what people call lip-reading but which is actually more accurately termed speech-reading. Speech reading is difficult for most people; a skilled speech-reader, with no distractions, can usually pick up about a third of what is said. If a speech-reading person is tired, distracted, or, as in the talk I co-presented last year, has to follow more than one person speaking, the level of accuracy is going to be greatly affected.

As a presenter, I’m not comfortable with any of the people in the room only effectively being able to absorb a third of what I or others say during my presentation, and that some of what they’ve gotten may not actually be what was said. I can’t influence whether someone is paying attention, or how they’ll interpret what is said, but I can make sure they have access to everything that is going on in the room. In other words, while I am in that presentation space, and it is my scheduled presentation time, I, and anyone else I may be presenting with, have a responsibility to ensure the access and emotional safety needs of everyone in that room are met.

In addition to the average impediments to speech-reading, anyone watching my lips and face is probably going to have a much harder time reading my speech.

Why?

Because (here goes!) the face I have now is not the face I was born with. I’ve gone through a lot of surgery to correct facial anomalies, resulting in mild nerve damage and weak muscles. The way I form my words isn’t the way other people form their words. Knowing this makes me even less comfortable with the idea that someone might watch me present and not understand me.

Yes, this topic means enough to me that I’m willing to publicly share something that I don’t talk about with many people these days.

So,, what has unfolded for me over the past couple of months is a growing consciousness of cross-disability support and solidarity and a greater awareness of what is important to me as a presenter.

This year, the Deaf person I mentioned earlier didn’t have to read my speech or miss comments from audience members. There was an ASL (American Sign Language) interpreter. So, any person in the room who would benefit from ASL—and there may well have been other people I wasn’t aware of—didn’t have to rely on watching my face,or on straining to hear my soft voice. They could focus on getting whatever they came to the presentation for; I hope they, and everyone else, got that.

And, of course, I’d be remiss if I didn’t point out that it’s good practice to “walk the walk” as well as “talk the talk.” The idea of giving a presentation on disability and accessibility while being aware that someone who wanted to attend had an access barrier didn’t sit at all well with my sense of integrity.

I don’t know yet what this means for future presentations. Given the physical inaccessibility of so many spaces, the challenge of lining up interpreters or access equipment, I haven’t quite worked out how I’ll be able to ensure that people know they can get any access need met in any space where I’m presenting.

So, my integrity won’t let me put a fluffy happy ending on this, won’t let me declare undying promises of universal access,.

All I can do is continue to be self-reflective, as transparent as I can be, and to make a promise, to myself and others, to do the work that needs doing, and to stay the course when that work gets tough.

Wherever I go (professionally) I want to bring you with me.

Mar 212014
 

Last weekend I was at Catalyst Con. A lot happened in my heart and mind; now that my body is recovering, I can write about some of it. This might take a few posts.

For now, in no particular order, a collection of snippets, both playful and serious, from my weekend.

  • My weekend started on Friday afternoon with Sex writing 101, a workshop on everything from writing craft to publishing know-how given by Rachel Kramer Bussel. This was a fabulous workshop—three hours of information, encouragement, creativity, companionship and a few laughs. To think I almost didn’t sign up for this! Rachel’s feedback was warm, inspiring, but also clear and targeted,. I felt safe and welcome in this writing space, and even built some confidence to keep working to put my writing and ideas out there.
  • There aren’t words to describe how deeply moved I was by the Living with An STI panel. Adrial of Herpes Life,
    Ashley Manta,
    kate McCombs and Raul Q created a friendly, accepting, and educational space to talk about the stigma around sexually transmitted infections. Among the many important messages shared in this space: STI prevention strategies are important for public and individual health, but never at the expense of anyone’s humanity and dignity. In other words, treat people like people, not like case numbers, not like robots that can be programmed to do exactly what we want them to do. Harm-reduction is meeting people where they are and giving them information that will help keep them safer, based on what their lives actually look like, not on what public health professionals and others in helping fields think their lives should look like. You can read more about the philosophy and practice of harm-reduction here.

    I think it was Adrial who shared this thought: When we talk openly, we can heal the wounds of stigma and feel more connected. kate, Ashley, Raul and Adrial modelled this beautifully and I hope everyone in that room passes that compassion and helpfulness on to others.

  • Seeing Crista of Dildology and her rainbow bustle made me smile. I’m guessing that bustle was a good luck charm, as I actually got to share many hugs and short conversations with Crista; usually we wind up missing each other completely at conferences. it didn’t hurt that my playful femme side perked up in appreciation after it encountered the bustle–rainbows and fluffy things for the win!
  • Del Tashlin’s talk on sacred sexuality reaffirmed for me that our sexual selves aren’t just about what we think and what we experience in our bodies, but include our connectedness with any sexual partners we have and with the world around us. In talking about how we transmit, perceive and talk about energy Del moved beyond the visual—so many introductions to sacred sexuality and connecting energetically with one’s sexual partner stop at eye contact—to encompass a whole range of sensations and perceptions (smell, touch, kinetic awareness, perceived temperature, etc). As someone who can’t see, I was grateful that Del’s introductory talk includes such a broad range of sensory experiences.
    Heightened sexual awareness can also connect us with other types of awareness. Del encouraged all of us to pay attention next time we experience a sexual release, to ask whether there is anything important we need to know, and be open to any answers that come to us.
  • Problem-Solving Sex with Disability inspired me to keep talking about this topic, not to back down or be afraid. Mara Levy is personable, dynamic, compassionate, and a brilliant presenter. I’ll write more about mara’s presentation in another post, but I just had to mention it here as a highlight of my weekend. Mara’s model for problem-solving sex and disability includes figuring out whether an impairment or set of impairments can be fixed, compensated for, or actually featured in the sexual encounter or experience. Plus, I was excited to discover that mara is local to the DC area. There are so few voices talking specifically about sex and disability that it’s marvelous to have another one in this part of the globe.
  • Hanging out at the Tantus display table gave me ample time to catch up with and be inspired by Ducky DooLittle and to handle many of Tantus’s aesthetically pleasing and sexy wares.
  • Last (for now), but very much not least, thinking about everyone who attended my Nuts and Bolts of Acccessibility presentation still fills me with joy. Thank you to everyone who attended for engaging so deeply with the topic, sharing of yourselves and making this early-morning presentation such a positive presenting experience. Thanks also to folks who live tweeted the presentation!
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 erotic and 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.