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My Body is a Cage (repost)

For your enjoyment, here’s an old blog post Jeff wrote back in the summer of 2007. Post-script: that show Family Guy TOTALLY ripped him off on the creed at the end, just remember wrote it first.

***

Over the past few weeks I have been struggling with the concept of language, specifically in relation to “disability”. To me, the word “disability” symbolizes everything I’m not–lacking ability. Sure, I’m not the greatest at math, cannot sing opera and will likely never dance like Ricky Martin, something my “Guide to being a Manly Man” tells me is probably not such a bad thing unless I truly am living “la vita loca,” but really, is this different than anyone else? Everyone has limitations, no one is perfect…especially not Ricky Martin.

But, irony raised its cruel and vengeful head this week when it came to be that time of the month. Yes, that period we all experience where we are force to suffer through obscene discomfort and frustration, which, we’re told is “only natural” and “ultimately for the best.”

Now usually I don’t loathe the standard wheelchair tune-up, but this month proved to be particularly bothersome as my chair required some extra special attention after it had a minor run in with a certain form of transportation that is not the most…accepting…of “differently abled” individuals. I don’t want to name names or point fingers because that’s not the point of this entry, but, lets just say if the powers that be wanted me to fly they likely wouldn’t have put me in a wheelchair…or at least would have provided me some wings…or a rocket pack.

So because this was gonna be a day or two to deal with, Shoppers Home Health Care offered me a loaner chair so that I wouldn’t be completely immobilized for an entire day, left to the whim of gentle strangers and friends who may be around to graciously transport my little crippled body around the apartment.

While it was a nice gesture, don’t get me wrong, this loaner chair turned out to be a little bit of a disaster. This shouldn’t be too surprising, as it is just a loaner chair after all, but the experience I had while using this loaner chair was something pretty remarkable.

For one of the first times in my life…I felt disabled. It was almost like my brain had been scooped out of my body and plopped down into the body of a perfect stranger…a stranger who walked funny and had about 150lbs of extra junk located inside their trunk. Navigation was nearly impossible as the loaner chair drove differently than mine along with being significantly wider and longer. The results were humorous, albeit regrettable for my apartment walls and door frames. Truly, for that day my substitute body was a cage and contrary to what The Arcade Fire may tell you, my mind certainly did not hold the key. No matter how hard I concentrated I just couldn’t get the hang of it–instead I just looked like I was drunk…which I guess is okay, it helped me blend in with the other University of Western Ontario students.

No, instead of figuring out how to drive the chair, my mind spent a majority of the day yearning for that warm, comfortable consistency of my old body, my old chair. I felt like an amputee, mourning the loss of his favourite limb or like a junkie craving just one more ride on the white pony. I needed my fix and I needed it bad! What I realized is that my chair, which I’m comfortably lounging in as we speak, has truly penetrated me deeper than I could have ever imagined. It has become an intimate part of my life, a part so deeply intertwined with my identity that I don’t feel quite complete without it and actually yearn for it when it’s taken away from me!

I know I shouldn’t be saying this and disability theorists everywhere are probably pulling out their hair screaming “PEOPLE FIRST! PEOPLE FIRST LANGUAGE! THE MACHINE DOES NO MAKE THE MAN! I’M GOING TO KILL YOU PRESTON, I’M GOING TO KILL YOU DEAD! AHHHHHHHH!”, but I think there is really some validity to the statement that my wheelchair has had a profound affect on me over the past few years that I have used it, in the same way that I have had a profound affect on it. Oh yes, this is not a one way street and I think that’s where the power of it all comes from. No, the chair does not make me who I am, however, it is a part of who I am, possibly one of the best parts, and I don’t think there is anything wrong with that. In fact, I urge all you adaptive technology users out there to proudly show and respect your equipment!

So sing it loud and sing it proud. The Marine Corp wrote this little ditty to train killers, but with a bit of modification I think it becomes a nice little ode:

This is my wheelchair. There are many like it, but this one is mine.

My wheelchair is my best friend. It is my life. I must master it as I must master my life. My wheelchair, without me, is useless. Without my wheelchair, I am useless. I must drive my wheelchair true. I WILL…

My wheelchair and myself know that what counts in this life is not the batteries we fry, the noise of our burnouts, nor the tire tracks we make.

My wheelchair is human, even as I, because it is my life. Thus, I will learn it as a brother. I will learn its weaknesses, its strength, its parts, its accessories, its controls and its tires. I will ever guard it against the ravages of weather and damage as I will ever guard my legs, my arms, my eyes and my heart against damage. I will keep my wheelchair clean and ready. We will become part of each other. WE WILL…

Before God, I swear this creed. My wheelchair and myself are the defenders of independence. We are the masters over immobilization. WE ARE THE SAVIORS OF MY LIFE.

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Scientific Research on the Safety of Wifi

Picture of puppy dog before the wifi study
As you can see, the subject is runtish, dumb, and depressed.

Over the past year or so, there has been an increasing concern among people in our community that Wifi signals are dangerous to our health. From parents who claim their students are being harmed by wifi in the classroom to dutch researchers who believe wifi may be killing the trees, there is no shortage of alarmist vitriol out there surround wifi. Being a big fan of technology and an expert researcher, I decided it was time to do my own research on the safety of wifi. The results of my study may shock you.

Disclaimer: no animals or people were harmed in conducting this research.

So my research project was simple–blast a dog with wifi signals and see if he dies from it. Starting last summer, I procured a chocolate lab puppy and set up his bed next to a wireless router that is blasting out both a 2.4ghz signal and a 5ghz signal. For good measure, I always had my wireless phone and cell phone around too, although I cannot confirm a consistant dose of these waves on the puppy.

Almost a year later, the results are simply astonishing. Not only have the wifi signals not killed the dog, but it appears they have actually make him grow dramatically bigger, smarter and stronger. Over the course of 8 months, the puppy went from being a small runt weighing less then 10 pounds to a beast standing nearly 2 feet tall and weighing over 70lbs. Furthermore, the dogs problem solving skills have dramatically improved, making complex tasks like fetch and retrieve that were once difficult to be almost routine.

Picture of much larger dog after the wifi study
After the test, the subject is robust with a glint of intelligence lying behind those cold, dead eyes.

Shocking, I know.

What does this mean? In the absence of ANY OTHER possible explanation, we can conclude from this study that far for harming us, wifi signals are actually making us bigger, stronger and smarter. While this has only worked with one subject, I am certain if I were to acquire another puppy we would see similar results. The power of wifi is just that strong.

This is great news for human kind and, as a doctor who you should absolutely trust, I am happy to finally put this debate to a close.

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Timmah! (repost)

South Park disabled character 'Timmy' gesticulates

I was sitting at home last night watching television when an old episode of South Park came on called “Up the Down Steroid” (s08e03). As I sat snickering at the immature (but brilliant) jokes I found myself becoming extremely uncomfortable with how the creators had chosen to represent individuals with intellectual disabilities in this particular episode. As I gradually became more and more upset with the flagrant use of the word “retard,” a moment of sheer transcendental brilliance occurred in a scene that I believe completely encapsulates the disability rights movement.

Without delving too deeply into the plot line of the episode, Timmy (my favourite supporting characters who happens to use an electric wheelchair) discovers that his friend Jimmy has been using steroids to gain an edge in the upcoming Special Olympics competition. Disturbed by Jimmy’s outbursts of rage, Timmy approaches Jimmy and begs him to stop taking the pills but Jimmy feels that the issue is not up for discussion. As a result, Timmy decides to report to the school’s guidance councilor with the hopes of getting Jimmy the help he needs, but, there is one problem; the only thing Timmy can say is his own name. The scene proceeds to depict Timmy attempting to tell Mr. Macky (the councilor) that Jimmy is taking steroids through the use of limited hand gestures and varying tones of the words “Timmy” and “Jimmy.”

While this leads to some cheap laughs at the expense of Timmy’s speech impediment, I believe there is an even deeper connotative meaning that can be decoded from this situation. In this scene, Timmy is physically prevented from communicating with a nondisabled individual; however, his disabled friend, Jimmy, is able to understand him perfectly. What I find so incredible about the Timmy character is that he perfectly represents the traditional interaction of the disabled with the nondisabled public. While we are all individuals, with different personalities and abilities, many nondisabled individuals seem to only hear us speaking the gibberish of a young child, treating us accordingly by raising their voice, speaking slowly, and avoiding any big words or subjects of consequence. I feel that what the creators of this series are really trying to do with the Timmy character is not to satirize a boy with a disabled, but rather, poke fun at the traditional perceptions of what our society constructs to be the ‘disabled child’.

Unfortunately, I fear this is a fairly accurate portrayal of the mainstream perception of the disabled, whether it is an overt or subliminal understanding. It is for this reason that advocates of the disabled and disabled activists must band together to encourage people to stop trying to see people with disabilities, but rather, to simply listen.

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Rumble in the Jungle: Tropic Thunder vs Intellectual Disabilities (repost)

Movie poster for the movie Tropic Thunder

Last year, Internets were abuzz over the past few weeks over the launch of the new Ben Stiller movie “Tropic Thunder” and the American-led boycott by advocates for individuals with intellectual disabilities. The argument is that the movie presents a negative representation of individuals with intellectual disabilities through a borderline-obsessive use of the word “retard” and a “Simple Jack” storyline, which allegedly aims for cheap laughs at the expense of people with intellectual disabilities.

Being a disabled advocate who is currently studying representations of disabilities in the media, I had to check out this movie and see what all the buzz was about. Although not immediately sure how I felt about the movie, upon further reflection I’ve decided I quite enjoyed it and don’t agree that this movie slanders individuals with disabilities.

Now, before I go any further, I will admit that I have never been diagnosed with an intellectual disability and do not consider myself to be directly a part of that community, although I did coach a Special Olympics hockey team for several years.

Having said that, I feel it’s important to look a little closer at this movie and not immediately classify it as trash just because it uses the cursed “R” word excessively. A quick glance at the Simple Jack storyline reveals the storyline is not taking shots at people with intellectual disabilities or attempting to get laughs at their expense. At its core, Tropic Thunder follows in the vein of many recent comedies, and arguably any comedy worth watching, in that it’s attempting to push the audience to a place they may not be overly comfortable confronting and then poking fun at our prudish perceptions. The goal here is to imply that these social faux pas may actually be ridiculous and require re-evaluation. What has been lost on some viewing this movie is that it’s a satire and is not attempting to make truthful claims about people with disabilities.

What this movie IS attempting to satirize, however, is Hollywood itself. Rather than poking fun at people with disabilities, Tropic Thunder is quite obviously taking aim at the Academy’s obsession with mentally challenged characters and the near-absurd parade of questionable movies that have been given the title of “masterpiece” simply because an actor pretends to have Down syndrome or autism (read: I Am Sam, The Rainman, What’s Eating Gilbert Grape, Forrest Gump, etc). It can be argued that these types of movies can be quite positive, inspiring audiences to “be better people.” At best, these movies help to show people that individuals with disabilities can contribute to society in a meaningful way, putting a face to disorders that are oft monolithic and marginalized.

But at their worst, films like I Am Sam contribute to a prevalent paternal superiority felt by the nondisabled, promoting the notion that people with disabilities have it so tough compared to everyone else and “normal folk” all have a lot to learn from those living the “simpler life.”

Ultimately, these films normalize what I like to call the “disabled hero syndrome,” where any accomplishment, no matter how easily achieved, place disabled character upon a pedestal of triumph. For accomplishing the simplest of tasks, we are often showered in patronizing complements and congratulations, to the point that every time I manage to go to the washroom anywhere but all over myself I half expect I’ll make headline news, complete with ticker-tape parades, a big achievement medal for bravery, and accolades raining from the rafters. While the disabled life can be difficult and sometimes we do go to extraordinary lengths to accomplish things some may consider medial or inconsequential, I’ve always found it strange when people are astonished and inspired by me completing a task that the nondisabled are simply expected to manage.

It is this superiority complex that Tropic Thunder so aggressively satirizes, to much success. If you ask me, we should not be boycotting or chastising Ben Stiller, we should be thanking him!

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Just a bit too tempting… (repost)

Aerial shot of the fork of the Thames River in London, ON

I totally forgot about this day until I went through some of my old blog posts from last year. It was just too funny not to repost.

*****

Given the warming weather and the arrival of my brand new wheelchair, my friend Dan (a fellow “crip”) and I decided to take our chairs out for a spin along the paths following the Thames River and check out Springbank Park. Driving along the path and taking in the sights, everything seemed to be going perfectly until we began running into people on the path.

Having spent my entire life in a chair, I don’t even notice the sidelong glances anymore and occasionally the seemingly obligatory “You’re going to get a speeding ticket” jest, but never in my life have I ever elicited such a response from such a broad number of people. Literally everyone we passed had something to say, whether it was a simple hello or perhaps some deeper commentary on the apparent hilariousness of two guys in wheelchairs out for a walk. One wheelchair is enough to elicit a stare, but apparently two chairs were just too tempting! I think it’s something like kryptonite to walkies. We even had one child question “Hey, are you old?” as we passed and a little later two children accosted us, bellowing “Hey, you don’t need wheelchairs, get out of there!” It was hands down one of the strangest occurrences of my life.

Generally speaking, people in wheelchairs are far from the norm in our society and while I see more and more people out and about in their chairs, it is still within the realm of possibility that someone could go their entire life without ever really interacting with someone in a wheelchair. It’s safe to assume that, at least in part, this limited contact tends to bring on the stares and the comments, as everyone loves to gawk at things that are strange and foreign to us.

Growing up I used to always get mad at parents who would chastise their children for staring at me, especially for berating the ones bold enough to ask me a question about the chair. While I can appreciate that the parents are simply trying to be polite, I think it’s important to open up a discourse and educate these children on disability so perhaps they won’t discourage their children for being intrigued and friendly in the future. By talking to people directly and openly about disability, we can help demystify the entire process, which will do more to normalize disability than any blog post ever could.

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Room with a view (repost)

SANYO DIGITAL CAMERA

 

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

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But At What Cost? (repost)

This is an article I wrote last summer but felt it was worth a second look.

*****

One of my favourite parts of summer in London is the copious amount of summer festivals held in Victoria Park downtown. This past weekend was one of the biggest of them all, SunFest. Like most of London, I decided to take a stroll to the park to check out the festivities.

While the festival was loads of fun, something else caught my eye and has had me thinking for the past few days. Sitting along side the bandshell in Vic Park was a transport truck with an advertisement for President’s Choice Children’s Charity on the side, depicting a cartoonish person in a wheelchair with the phrase “Making difficult lives a little easier.” The attached photo was taken with my camera phone — apologies for low quality/fidelity.

My gut reaction was frustration, fuelled by yet another advertisement that turns its nose up to living with a disability, rather than appreciating the complexity and, at times, benefits of being disabled. To make matters worse, the childlike drawing of a wheelchair that accompanies the text leads to the whole “the disabled are naive children who need protecting” stereotype.

But it was while contemplating these complexities that I realized, much like living with a disability, this advertisement poses a deeper question than whether it is good or bad because, at its core, being disabled can be more challenging and through the support of charities, like President’s Choice Children’s Charity, some of these difficulties can be alleviated. So, according to this analysis, the advertisement is depicting at least some semblance of truth. But at what cost?

The unfortunate reality here is that this type of guilt-based advertising methodology does work quite well, financially speaking. Charities have relied on pity parades for ages to guilt prospective donors into “doing the right thing” and “helping those less fortunate.” While these advertisements do generate huge dollars from those who feel morally obligated to pay penance for their manufactured sins of normality through donation, I am left wondering “at what cost?” Yes, the money raised will help us unfortunates to overcome some of these limitations, but is it worth the damaging hegemony that the disabled are “less fortunate” than those without disabilities? Is it really worth having wheelchairs and accessible buildings if the disabled are perceived as being pathetic simpletons who are forever dependent on the all knowing, all caring able-bodied overseers?

Ultimately, the problem with this advertisement lies in its simplification of a complex reality. While it is true that living with a disability can at some times be quite trying, this advertisement inadvertently reinforces our gut instinct to centralize the root of this difficulty as being the “disability” and not the socially and physically constructed barriers that limit us. It is not difficult to live with a disability, it’s difficult being disabled in a world constructed for the able-bodied: there is a huge difference.

While I believe their hearts are in the right place, charities genuinely need to take the long view when producing these types of advertisements and ask themselves if it’s really worth producing these types of ads when, in the end, it is kind of like throwing out the baby with the bathwater.

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Do the police fall under the AODA?

Picture of a toy police car

In case you have been living under a rock for the last few days, there is this little thing called the G20 happening in Toronto this weekend and a few people have decided to head down and throw a little protest of some variety. Sarcasm aside, there are some pretty horrible things happening in Toronto right now but I wanted to draw particular attention to a man who was arrested the other day in Toronto. While this may not seem like it should warrant an entire blog post, it turns out this particular man has a hearing impairment and was not provided with a sign language interpreter by the police to explain what was happening to him. I can’t even begin to imagine the sheer horror of finding yourself in an already chaotic situation and being arrested without warning or explanation. What ever happened to that whole “free society” and “human rights” stuff we seem so happy to barf up at the developing world with our chests’ puffed out proudly?

Whether the guy is guilty or not, this story is useful for asking a very important question: as part of the public sector, don’t the police fall under the AODA? If so, aren’t they mandated to comply with the Accessibility for Ontarians with Disabilities Act (AODA), which enforces accessibility in Ontario. One of the key elements of the recently passed Customer Service Standard is that all customers must be treated equally and provided the same level of service. It should be pointed out that all public sector services are required, by law, to comply with this standard as of January 2010. While some may interpret this differently, information coming out of the Accessibility Directorate of Ontario (ADO) indicates this does include providing alternate forms of communication for people who do not converse orally. While the example generally given by staff of the ADO is the use of paper and pen at a service counter, I don’t think it’s a stretch to include something as important as the reading of “Miranda rights” (for those American readers) under the header of “things that should be available in alternate formats.”

While this is likely an extreme example, given the circumstances of the arrest, it does point to a deeper underlying problem: police in our province are not adequately trained on how to work with and/or (heaven forbid) arrest people with disabilities. While there are obvious problems with attempting to arrest someone with a physical disability (wheelchair accessible patty wagon?), this problem is perhaps even more grave when considering mental illness.  I really hope advocates in the disabled community take this opportunity to demand greater accessibility within the police service and demand better training so officers are equipped to handle this situations fairly and safely.

Anyway, for some “on the ground” reporting on the G20, I highly recommend checking out Steve Paikin (of The Agenda fame) on twitter. Pretty crazy stuff.

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Disability discrimination on the rise?

News coming out of Britain yesterday states that disability hate crimes are on the rise in our colonial overlord, leading to a formal investigation. Some of the stats are absolutely horrifying,

Using data taken from Crown Prosecution Service (CPS) figures, the commission revealed that at least one person appeared in court every working day charged with a crime against a disabled person. Almost half of these cases (45%) involved violence.

In its latest report on hate crime , the CPS said in the two years up until the end of March 2009, 576 people were prosecuted for disability hate crimes with 76% of the completed cases resulting in a conviction. (via BBC and Disability Coaching)

While the numbers are quite damning, I immediately began questioning if this was a problem in Canada too because while I have certainly seen and experienced examples of disability discrimination (also known as ableism in some circles), I cannot for the life of me think of an example where someone has committed a hate crime against me. I think perhaps part of this disconnect lies in the use of language. When I looked into it, the Canadian definition of a “hate crime” (via a CBC Indepth report) certainly goes a long way to proving my hypothesis that I’ve never been hate crimed. I’ve certainly never heard of or experienced an individual or group of individuals “publicly stirring up or inciting hatred” against people with disabilities in my community. Rather, I think the true face of disability discrimination in Canada is far more insidious, with a subconscious ableism lurking behind statements like “It’s too expensive to become disabled” and “It must be so hard for you.” Rather than an outright hatred for people with disabilities, I think the favour of discrimination is more connotative, below the surface, and based more on ignorance than outright distaste. When a new building is constructed without an accessible entrance, it is not a hate crime, but rather a lack of knowledge or empathy for living with a disability.

I think this bodes well for us, as a community, as it is easier to educate than extinguish deep seated hatred. If nothing else, perhaps we have finally found 1 thing we do better than Britain…which is…not hate on disability? We’re #1! We’re #1!

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Police Accessibility Fail

"I saw the signs and it opened up my eyes. I saw the sign."
"I saw the signs and it opened up my eyes. I saw the sign."
“I saw the signs and it opened up my eyes. I saw the sign.”

I snapped this classic photo yesterday on my way home from campus. Apologies for the low quality image, I took it with my iPhone and when the police officer saw that she was busted, she peeled out of the spot, never to be seen again. Still, I wonder how long she would have sat there in the wheelchair parking if someone hadn’t started snapping photos.

(Click on the image to enlarge.)