Room with a view (repost)

 

As previously mentioned on this blog, I recently acquired a new electric wheelchair, an incredible piece of machinery produced by Permobil, called the “Permobil Street.” This chair is truly an incredible step forward in wheelchair technology, providing one of the smoothest and fastest rides I’ve ever had. The independent suspension and cambered wheelbase provides incomparable stability and is perfect for both city and all-terrain driving. For the first time ever, I think I may have finally found a wheelchair strong enough to withstand my high usage demands!

Perhaps more exciting is the added elevating seat feature I had installed. This fabulous piece of technology allows me to raise the seat up to bring my eye level to around 5-feet high, allowing me for the first time ever to converse with people face-to-face, naturalizing the social experience that many take for granted. It may seem insignificant, but there is something strange about conversing with someone in a wheelchair: walkies either tower over us or have to kneel down at our level, which I find both embarrassing and awkward.

I am truly astonished at what a difference this technology makes: everything looks different from up here. The raised perspective changes the way I look at everything. Suddenly, putting the freezer above the fridge makes sense, my cupboards are no longer for decoration, and it’s no longer a struggle attempting to operate light switches. Not only does this piece of technology help open up my own apartment, but also because it’s attached to the chair it is portable, meaning I can now do all of these tasks everywhere I go, not just in my “adapted home.”

Coming with a $5000 price tag, the seat elevating system is out of reach (…pun partially intended) for many living on ODSP. To make matters worse, the Adaptive Devices Program who help fund a majority of wheelchairs in Ontario have deemed this technology to be a “luxury” and “non-essential,” meaning it is up to the client to finance the technology themselves.

If the point of a wheelchair is to give someone his or her independence and this technology allows us to be more independent everywhere we take the chair, how is this it anything but essential? Consider the thousands of dollars being spent right now to renovate buildings to have lower cabinets, light switches, and door knobs when we could simply be building wheelchairs with increased functionality. I feel this makes far more sense than attempting to remodel existing infrastructure.

While I am a strong supporter of accessible/universal design, I am beginning to think a better way around some of these accessibility problems is by making wheelchairs more functional, not attempting to tear down and rebuild everything. Why isn’t there more funding for researching wheelchairs that can climb stairs? Why isn’t there funding for seat elevation and lowering?

Rather than reinventing the wheel(chair), we should be giving people the tools they need to live independently within their own environment, regardless if that environment follows universal design guidelines or not. By building accessibility into our chairs, we can have accessibility solutions now, while we wait for build environments to grow naturally as old buildings crumble and new, universally designed structures are erected.

httpvh://www.youtube.com/watch?v=ToNtpmzvugM

“And…this is your…aid?”

Cartoon nurse standing in front of red cross with "HELP" written above her head

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.