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“And…this is your…aid?”

Rewind to December 2009. Like most of North America, Clara and I decided to go to a local movie theatre and check out that little art-house picture, Avatar. After the movie, as we were about to brave the cold Canadian winter, I realized I had forgotten my gloves and scarf in the theatre. Being the wonderful girlfriend that she is, Clara headed upstairs to the box office to gather my things. As she returned with my acutrama, a distraught older man and his wife approached, very concerned that I had left my things behind. Apparently they noticed I had left my things on their way out and the gentleman seemed very concerned about my ability to survive without them. After assuring him that we had the glove and scarf and everything would be fine, he then proceeded to point at Clara and in a half-joking manner started saying it was her responsibility to remember these things, seeing as though she was my “aid” and all. I can’t begin to explain how angry this made me, as insignificant as it might seem. If a guy in a wheelchair is out with a girl, must she be his aid? Is it so unbelievable that I would have a girlfriend? There were a million angry things I wanted to say to the man, but in the ended I didn’t say anything (which, hindsight made me even angrier afterwards) because I knew I wasn’t justified to be as upset as I was about the whole thing and there was no value in yelling and screaming. Perhaps what really got my goat was that this wasn’t the first time someone has assumed Clara was my aid…and probably won’t be the last. Having said that, this particular “blame” experience was a bit unique: normally, people who presume Clara is my aid attempt to use her as a means of communicating to me.

This is an experience anyone with an attendant or translator can probably relate to–people often assume that because I have a personal support worker, I must not be able to speak for myself. The problem of dealing with people with disabilities and their aids is dealt with in a recent blog posted by Choose Ability Accomodation’s Blog, where someone who works within the disabled industry even had a tough time comprehending the dynamic of individual with disability and support worker communication. As you can see, even those “in the know” don’t always know how to navigate these situations.

Without overly simplifying or banging the logic drum a bit too hard, the obvious solution to these situations is to always, always, always speak to the person and not to the support worker/translator. It may not seem like a big deal, but I can say from first-hand experience there is nothing more humiliating then having a waiter ask your support worker what you want to eat.

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Disability and Bullying

It would be nearly impossible to maintain a story about two high school students without broaching the topic of bullying, however a story coming out of the US over the past few days has inspired me to write a couple quick comments on the subject. In case you haven’t heard yet, several boys are in a lot of trouble after self-tattooing some naughty words on the butt of a boy with a developmental disability (via FoxNews). Insert astonished gasps, questions on where the parents were or how we let these boys down as a society, and calls for pitch forks and torches.

Going through the public education system with a visible disability was no walk in the park, but I think I had it easier than most. I was lucky enough to largely go unnoticed throughout my school years and most of the negative attention I did draw came more from my propensity to geekdom than my physical limitation. I think perhaps this was largely because bullies knew my disability didn’t really bother me and so they didn’t try and leverage it against me emotionally. Having said that, my parents were warned when I was first diagnosed that kids would pick on me for being different, especially during the puberty years when a bully’s insecurities with their own changing bodies would be worked out at the expense of those with even stranger bodies (like those with weight problems or in wheelchairs).

Ultimately, I think the younger years are perhaps some of the easiest to live with a disability while the teenage years are probably some of the worst. Kids are generally accepting and always inquisitive of difference, but teenagers are so insecure themselves that the first sign of deviance is seen as an opportunity to ridicule and subjugate, if only to solidify their own place in the world. I’ll be the first to admit that this perception is filled with generalizations that doesn’t describe the experience of all teenagers, but I think it does explain some of the difficulties teens with disabilities have integrating into the social structure of high school.

Far from saying this should discourage us from attempting integration, I think disability (or more specifically adapted ability) actually provides us with a place to broach the subject of body, identity and difference with teenagers. Rather than looking down at disability and chastising youth for talking to or about people with disabilities, we should encourage this interaction and change the discourse from the negativity of difference to the opportunity of adaptation. Rather than talking about all the things I can’t do, why don’t we look at the things I can and consider the things I could do with support? I’m certain most teenagers would find that with a bit of help (and some craftiness) they could be just as “able” in a wheelchair as they are without. By looking at these differences positively, perhaps it will give these youth an opportunity to look at their own strengths and limitations in a different and more empowered light.

So what should be done about the little tattoo artists in the States? Well, I’m not a judge, jury or executioner. In fact, I’m not sure I’m even qualified to practice law in the USA, but I’m sure a few good solutions could be cooked up if given the time to ponder. Sure we could tattoo things on their bums and see how they like it or maybe do some sort of “spend a day in a wheelchair” to try and teach them to empathize with the disabled, but would that really correct the problem? Yes what these boys have done is awful and they certain deserve to be punished, but perhaps the real lesson here is that we need to do a better job in our schools of educating about disability so that this doesn’t happen again to someone else. It’s like that old saying, the true mistake is a mistake you don’t learn from.

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Adapted Ability

Two years ago, I wrote my Masters thesis entitled “Augmented Ability, Integrated Identity: Understanding Sapienism, Adaptive Technology, and the Construction of Disability,” which compares the language used to describe disability with the language that anti-technologists, like the Luddites, use to talk about technology. What I found was a startling similarity, specifically that both depended on words describing or insinuating losing “control” or “autonomy” when relying on technology. Ultimately, I postulated that perhaps our lack of comfort with disability actually stems from our inherent distrust of technology: that we feel uneasy about the equipment rather than the person who uses it. Editors note, yes I did make up the word “Sapienism.” Whatever, I’m an academic…it’s my job to make up words. If you don’t like it, you better hope I don’t make up a new word to call you because it will be fiercetastic…ferociotical…beastimal…badtastic?

Anyway, that was two years ago and, as we all know, times they be a changin’. I feel our society is slowly getting over our collective distrust of gadgets, especially younger people, when it comes to social technology, like smart phones, that have become an essential tool in our day-to-day private and public lives. Whether this is a good or bad thing for society remains to be seen, but one definite positive to our unrelenting demand for smaller, faster and cheaper smart phones is the incredible accessibility opportunity these portable processors provide. A recently released report by Mobile Future entitled “Mobile Ability: The Transformational Impact of Wireless Innovation for People with Disabilities,” explains how, through mobile technology, individuals with visual and auditory limitations are being “liberated” through apps that will convert text to speech and provide turn-by-turn GPS navigation, meaning the “guide dog” is about to go the way of the dodo. This bodes poorly for my current service dog Kurzweil, as it looks like his lack of 3G connectivity could be a huge limitation going forward. Having said that, I think he’s safe until the iPhone comes with a furry case.

Noooooooooooo!

I think what’s truly great about this smart phone technology for individuals with disabilities is that it allows us to use consumer products that are both universally used and competitively priced (I’m looking at you Shoppers Home Healthcare…). This means rather than using the “weird” wheelchair or the “strange” cane, we’re moving to a point in our society that accessibility is finally being incorporated into mainstream products rather than being supplied only as a specialty order. This is the true spirit of inclusive design that we should all be striving for!

PS: If I ever launch a rap career, “Strange Cane” is going to be my first break-out jam. Ya huuuurd.