Author: Jeffrey Preston

Born with a rare neuromuscular myopathy, Jeff has spent his life dedicated to advocating for himself and others with disabilities. With a PhD in Media Studies from Western University, Jeff's research focuses on the representation of disability in popular and digital culture. Jeff is currently an Assistant Professor of Disability Studies at King's University College @ Western University in London, ON.

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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.)

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How to Get Rich Quick

Side profile of a TTC Wheeltrans bus

A recent post by Ryan over at Driving Off the Beaten Path about his experience on Para-transpo in Ottawa inspired me to repost an old article I wrote about Paratransit here in London. Make sure to check out Driving Off the Beaten Path blog!

—Originally posted April 4, 2009–

London Knights logoFor as long as I can remember, hockey has been a big part of my life. Some of my earliest memories are of playing mini-sticks with my Dad and sister in the living room, laughing and having fun while pretending to be Grant Fuhr. I was so hockey obsessed that I swore up and down throughout grade school that one day I would grow up to be the first disabled NHL goaltender. Although a lofty goal, my parents were supportive, hoping a more feasible career would catch my eye and steer me down a more realistic path.

Although eventually moving on, hanging up my pads and realizing, albeit with a deep sigh, that the Maple Leafs won’t likely offer me an entry-level contract, I still spent a vast majority of my time watching, playing, talking or thinking hockey. Although the Leafs will get another extended summer break this year, hockey fever has taken hold in around these parts as the London Knights, the local OHL team, are burning it up in the early stages of the playoffs.

Today, tickets for the 3rd Round of the playoffs finally came on sale and I woke up early to make sure I wouldn’t miss out. Because I need wheelchair accessible seats, the Knights require my tickets be purchased over the phone rather than online. Presumably this is to ensure people with disabilities are getting the seats, although there’s no validation process to ensure you actually need wheelchair access when buying the tickets. Anyway, I began dialling my cellphone as quickly as possible, hanging up the second I heard the busy signal and quickly dialling again. I figured the line would be pretty busy, reminiscent of my repeated dialings to get Leaf tickets to watch Mats Sundins’ return to Toronto earlier in the year. I was amazed at how fast I could switch between dialling, hanging up and dialling again–it was as though I had practiced the manoeuvre many times before. As the clock pushed past 30 minutes with still no luck, I was beginning to get frustrated and muttered under my breath, “Jeez, this is almost as bad as Paratransit.” That’s when I realized why I was so fast at dialling: it’s the exact same process used when attempting to book a ride on Paratransit.

Paratransit, run by the London Transit Commission (LTC), is a specialized door-to-door transportation service dedicated to individuals with disabilities, not unlike the Wheeltrans system in Toronto or Paratranspo system in Ottawa. Paratransit was created as a stop-gap solution to augment the lack of accessible bus routes in London while servicing individuals who aren’t able to wait in the cold for busses or navigate their way to the bus stops because City Council cancelled snow removal for sidewalks in the winter several years ago. In principle, the service is a good idea and an absolute necessity. The problem is that in practice this service is essentially unusable.

One of the biggest problems facing Paratransit is the booking system. In order to get a ride on Paratransit, you must call in at 7am, three days before you wish to leave your home: no earlier and no later. Unfortunately, the service does not have any sizable queue system, meaning that clients are constantly met with the same busy-signal that greeted me in my attempt to get Knights tickets. This means that not only must we dial in, over and over again, hoping desperately to get through, but which calls actually do get through is completely arbitrary, based on whether or not you happen to dial when the queue opens rather than on a first come, first serve basis. While this may not seem like a big problem, much like Leafs tickets, if you don’t get through in the first 40 minutes you are likely out of luck–all the rides for the day have been booked. For those lucky few who do manage to get through, there is no guarantee they will get a ride either. The rides are booked extremely quickly, often requiring you to settle for a pick-up time several hours before your appointment. Finally, just because you have a booking does not mean the ride will even show up, as rides are consistently 30 minutes late and, in my experience, are just as likely to not show up at all.

While there are many explanations as to why the Paratransit program is failing, like lack of funds, something that astonishes me is that the word coming from the LTC is that the system works well considering the resources they have available. When asked if there are any problems, the answer most often touted by the LTC representatives is that aside from buying more busses, there is little they can do to improve the system.

In the end, I did manage to get tickets to see the Knights play next round. Even though it took over 40 minutes to finally get through, I now have better success buying Knights tickets than I do getting a ride on Paratransit. When it’s easier to get playoff tickets for a hockey game in Canada than it is to get a ride on a daily basis for people with disabilities in London, something is terribly wrong.

By implementing a fair booking system through an automated queue system or first-come, first-serve online booking, Paratransit could immediately solve one of the most frustrating problems plaguing the system without a huge expenditure of resources, financial or otherwise.

If Paratransit rides continue to be so difficult to get, maybe I should take a lesson from those guys out front the Air Canada Centre and start scalping rides to the highest bidder. Anyone need a ride? I’ve got the hottest, most exclusive ticket in town…and a whopper of a student loan that needs to be paid!

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“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.

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Mobilize March -- Travel Blog

Mobilize March v2.0 for Easter Seals Ontario

From the moment I was diagnosed at 3 months old with Congenital, Muscular Dystrophy my parents raised me to be a fighter. While my parents acknowledged there would be challenges, they truly believed life with a disability did not have to be a life of no ability. It is because of their undying support that I have been able to accomplish some pretty amazing things in my short life, all because they wouldn’t let me use the word “can’t.” In many ways, it was for my parents that I set off from London in 2008, to honour their hard work and help show the people of Ontario just how “able” someone with a disability could be. On my trip to Ottawa, I hoped to show people that contrary to the popular euphemism “confined to a wheelchair,” wheelchairs are actually about freedom. Unfortunately, wheelchairs are expensive pieces of equipment, the average electric chair running over $20,000, with limited funding to offset the burden placed on families whose youth have disabilities. The result are youth left stuck, immobile in their own homes, watching their friends play as they wait for funding to come through.

Enter Easter Seals Ontario. Easter Seals is an organization that helps fund the costs of these crucial pieces of equipment to help get kids moving again. Over the years, Easter Seals has helped thousands of families like mine purchase equipment that helps us overcome our limitations and live independent lives. Recently though, as our community tightens our collective belts, Easter Seals London had to waitlist two families in dire need of equipment funding last year, a nightmare scenario set to repeat itself this year as international disasters have diverted much of the local moneys to support those worthy causes. The result, however, is more families in London may be waitlisted this year, left in the lurch, waiting for equipment that is needed now.

On May 29th in Springbank Park, supporters of Easter Seals are gathering for the “Walk With Me” event to help raise money to ensure this does not happen. Youth and adults alike from the London community will be using their legs to help kids with disabilities get moving and it didn’t seem right for me to not do my part and help out. It is for this reason that on Friday, May 28th of 2010, I am taking to the road once again, this time driving my electric wheelchair around the circumference of London to raise awareness about the dire need of funding for Easter Seals in London to help us continue to support youth with disabilities in our community. The marathon will take me over 10 hours to complete, start to finish, and will be the longest drive in a single day that I have ever made in my electric wheelchair, totaling over 90km. The trip will be tough and the road will be long, but it’s a journey that would not have been possible without organizations like Easter Seals to help pay for the wheelchair. On May 28th of 2010, I will show London just how able we can be if we have the right support and that’s where you come in.

On Friday, while I’m out on the road, show your support by going to the Easter Seals Ontario website and making a donation online or make a donation to support a friend or family member who is participating in the “Walk With Me” event on Saturday. Your donation will go a long way to getting kids with disabilities in London moving again.

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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

Overhead shot of people walking atop a wifi symbol painted on the ground

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.

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Glee. But good.

Cast of "Young, Autistic, and Starstruck"

It appears the disabled are taking over the airwaves in Britain on a show called Young, Autistic and Stagestruck, which is apparently a

“…landmark series [that] follows nine autistic youngsters as they attempt to produce their very own stage show, under the guidance of theatre professionals who’ve never worked with an autistic cast before”

This is an interesting development given Hollywood’s propensity to employ nondisabled actors to play disabled roles. Here’s looking at you, Glee, the most offensive show to grace the airwaves since Hitler’s Happy Puppy Killing Bonanza Quarterly. (Even in some of the promo shots for Glee, actor Kevin McHale is shown blatantly walking around on his two beefy and perfectly functional legs. Secretly, well at least until you read the next sentence, I want to go meet this Kevin McHale fellow at one of their performances and cause a big scene demanding he tells me where he found the cure to his disability.)

Why does Britain do everything better? It’s sort of like how your ex-girlfriend always goes on to do amazing things after you break up…just to rub it in your face that you had a little “revolution.”

Anyway, I first found out about this show from a cute little blog called “Inspire Blog,” who blogged about it here.