Are the disabled ‘afflicted’?

Facebook post featuring Sarah Palin and her son, Trig, with the text "A show topic yesterday in which Andrew innocuously referred to Sarah Palin's son, Trig, as "Down's Syndrome-afflicted" spurned several complaints alleging that calling Down's Syndrome an "affliction" is wrong. Do you agree, or is it splitting hairs?"

On January 6th, I was invited to speak on AM980’s Andrew Lawton Show about a recent Facebook post on the radio station’s fan page stating Trig, Sarah Palin’s son, was “Down Syndrome-afflicted.” Mr. Lawton and I had an engaging conversation around whether or not the term “afflicted” is offensive or if people are simply nitpicking for political correctness. For those who were not able to tune in to the broadcast, I’ve decided to write a short meandering blog post outlining why we need to stop referring to disabled people as being “afflicted.” Continue reading “Are the disabled ‘afflicted’?”

Guest Lecture at Fanshawe College

"Guest Lecture" written above the Fanshawe College logo

On Thursday and Friday of last week I was invited by Danielle Cheyne to speak to 3 sections of her Human Services class on accessibility and life with a disability. We had some excellent conversation and, as always, I was impressed by the students comprehension of the issues and willingness to learn. In a city that can be, at times, wholly UWO-focused, I think we need to remember to take time and recognize the great work being done at Fanshawe College. Thanks to Danielle and the students for being wonderful hosts, I had a great time and look forward to my next chance to spend some time on campus.

Sickness, Heroes, and the Fall of Lance Armstrong

The Fall of Lance Armstrong

I woke up this morning to discover an Op Ed written by Morris Dalla Costa entitled “Lance Armstrong shouldn’t be judged for doping” was gaining some national traction on Twitter. After reading the article, though, I was left with some conflicting emotions.

Let me preface this by stating what follows isn’t necessarily a critique of Dalla Costa’s article, or even the intended point of the article, but just some thoughts that were going through my head after reading. So file what follows under “inspired by” as opposed to “in critique of” the LFPress article.

What I found most striking about the article, and about the handling of the Armstrong accusations and subsequent admission, is the focus on Armstrong being a cancer survivor. As Dalla Costa states, it’s tough placing all of the doping blame on Armstrong when so many of his colleagues were behaving the same way, look no further than Major League Baseball at the time, and as such at issue here is not the doping in and of itself. People seem to be personally offended, on a scale far greater than previously seen, by what he has done. We are responding as though we’ve been cheated by him, in a way more personal, horrendous and vile than any of the other cheaters. Dalla Costa goes so far as to say that Armstrong’s lies and deception literally tore out our collective hearts. Put frankly, Dalla Costa explains why Armstong is the villain here:

“He is an egotistical, lying, phony that took millions of people for a ride, people who didn’t know a thing about cycling but would watch and cheer the man who beat cancer, a hero and example in courage and honesty.

 

Many of those included the most vulnerable people in the world . . . those with cancer and those who supported cancer research.They thought Armstrong was a man that understood the suffering people go through, how families can be ruined by bad luck. They thought him a man who did what he did to alleviate suffering and misfortune. Not just those with cancer but ordinary people who rejoiced in watching him succeed on the bike, a testament to tenacity and faith.”

When broken down to its core, there are two narratives at work within this article; one of morality and one of betrayal. From one perspective, Armstrong is depicted as a bad person who has bullied, brutalized and cheated his way to tremendous wealth and celebrity. The other perspective, which is messy and far more complex, is that Armstrong is a bad person because he touched our hearts, a saintly man who we cared for deeply and were rewarded for our dedication to living “strong,” to overcome like our noble hero, by him turning out to be no better than anyone else. It appears perhaps the greatest crime Armstrong has committed, the one we  simply cannot forgive, is that he is human and, even worse, just as flawed and complex as the rest of us.

I think this is particularly interesting  because it touches on a myth that informs much of our response to sick and/or disabled individuals that we encounter. In the Judeo-Christian belief-system, the disabled have long been depicted as “touched” individuals, those who have been touched by God and through whom we might all gain entry to Heaven with charity and compassion. The disabled and the terminally ill are often thought to occupy a space somewhere between Heaven and Earth, often believed to possess divine (or merely clear) vision of how the world works and what should be important in our day to day lives to prepare for the day the days cease. In many ways, I think we look to the sick with admiration because we hope we too will have the same courage and grace in the face of death and are doubly humbled by those who come face-to-face with impending doom and survive. What draws us to Armstrong’s story is that, before the scandal, we saw him as an example of what we too could achieve. Facing the diagnosis of cancer, we too could fight back, win, and do incredible things in the aftermath. His story became a promise that being a good person and believing would be enough.

So perhaps we’re not actually mad at Armstrong, in the same way that we didn’t actually worship Armstrong to begin with either. We loved Armstrong before because he was an example of what we could become and we hate him now because he forces us to interrogate our own complex, flawed, and morally ambiguous reality.

And perhaps that is what this should really be all about, reality, because both sides of this story are true. On the one hand, humans can achieve miraculous things when they put their minds to it. While on the other hand, humans are inherently greedy, selfish and willing to do anything for a competitive advantage. The only question that matters, the lesson to be gleaned from the tale of Lance Armstrong, is which hand will you choose to hold at the end of the day?

Komoka Scouts Troop

I took a trip west of London tonight to speak to a Scouts troop based out of Komoka. It’s always a great time heading to the country and spending time in lovely small towns like Komoka. The Scouts were an excellent audience and had some really great questions about life with a disability. Thank you to the Scout leaders for inviting me out and I hope to see you again soon.

Stairs and Pornography: Unlikely Bedfellows

A creative staircase
OPPRESSOR!!!!!!!!11111

Clara recently found this very cool post (with hilarious title) on Tumblr and knew I would love it (she was right, obviously). While the concept is pretty good and the photos are quite cool it’s actually the title of the post that caught my eye. No, not just because it has the word “porn” in it. In fact, you might be surprised to find out that stairs and pornography actually have something in common–you just have to consider the origin of stairs. Please note that there isn’t any pornographic content in this blog so if you came here looking for that, we’re sorry to disappoint. Continue reading “Stairs and Pornography: Unlikely Bedfellows”

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.

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.