The problem with “Spend a Day in a Wheelchair”

Many advocates, myself included, often point to the general population’s ignorance of the experience of disability as being central to the oppression faced by the disabled. The problem is that too many developers, designers and administrators are designing buildings, spaces, and programs along normative understandings of ability and function rather than basing their work in the aberrance of the human form. For years, we have run events like “Spend A Day In A Wheelchair,” in which able-bodied individuals are assigned certain disabilities and required to complete tasks, the theory being that by experiencing life with a disability these individuals will have a better understanding/appreciation for the plight of the disabled. In this blog, I would like to take some time to explain why this is a flawed educational tool and recommend we stop deploying these schemes, as they’re doing more to hurt the disabled subject than help. Contine reading

The 19th Annual Jeff Preston Celebrity Golf Tournament

I remember not knowing quite how to feel the first year Port Elgin Rotary approached my family and asked if they could hold a charity golf tournament to honour the work I had done for the Muscular Dystrophy Association of Canada. Obviously I was absolutely humbled by the kind offer but it was a lot for a 12-year old to process at the time. Mostly, though, I was just excited to have the opportunity to continue raising funds to fight Muscular Dystrophy, driven by the recent loss of a dear friend who had Duchenne, Muscular Dystrophy.

After the second year, I remember driving home from the Saugeen Golf course and my mom warning me not get my hopes up because this tournament, named after me, would likely not continue for much longer. My mom knew better than most that these types of charitable events were huge undertakings and energy–and funds–were quick to wane.

Leafs sweater signed by Baun, Bower and Jeffrey

Hot item in this year’s life auction: A Maple Leaf’s Winter Classic sweater signed by Bobby Baun, Johnny Bower and Larry Jeffrey

Years later and I’m proud to say my mom was totally wrong.

Last week marked the 19th anniversary of the “Jeff Preston Celebrity Golf Tournament,” organized by Port Elgin Rotary and held at Saugeen Golf Course. To date, we have now raised over $1.2 million to support MD research across Canada, most recently directing funds to Jesse’s Journey. Once again, we had a full slate of golfers (41 teams in total) taking to the course on a beautiful Friday afternoon. It is truly amazing how many golfers have returned every year with most having attended the tournament for more than a decade. Because of their dedication, and the hard work of local Rotarians, we were once again able to donate $25,000 to MD Research and step that much closer to finding a cure.

I just wanted to take a few moments to publicly thank everyone who worked so hard this year to make the tournament a success once again. First and foremost, a huge thank you to Kevin Carter for chairing the organizing committee this year and keeping everything on track. Similarly, I would also like to thank Rob Dunlop for his work recruiting celebrities. Of course, I’d like to thank all of the dedicated Rotarians who work behind the scenes before the event and volunteer on the day of the event–without you, this could not be possible. I would also like to thank all of the celebrities for taking the time out of their busy schedules to join us, especially those who have returned year in, year out. Thank you again to Bruce Power and Unifor, our two title sponsors who have been with us since the beginning, along with the Power Workers Union who show up in force every year. Lastly, I would like to thank the golfers for giving their time and money to this cause that is so dear to me, my family and others within the MD community.

Thank you to everyone and I can’t wait to see you all next year at our 20th anniversary celebration!

Review: The Wolf of Wall Street (2013)

I went into this movie with pretty high expectations, given the pedigree of the production team and the buzz that this film could finally land DiCaprio his much desired Oscar. Although billed as a comedy, this film has been marketed as a satirical look at the opulence and moral bankruptcy of American stockbrokers in the lead-up to the economic crash of 2008. As you can imagine, I was pretty excited to see this one. Contine reading

Speaking Out Retreat in Burlington, ON

Today I delivered a motivational speech at the Speaking Out Retreat for Self Advocates in Burlington, ON geared towards adults with intellectual disabilities. This is the second Speaking Out retreat I have spoken at and it was a ton of fun. I met some awesome advocates and made some new friends. Thank you to everyone involved in organizing this event and a special thank you to Duane for inviting me.

Society for Disability Studies Conference 2013

 

SDS Conference 2013

This past week was the 26th Annual Society for Disability Studies Conference, a gathering of academics from around the world who are working within the field of disability studies to meet, connect and share their research. This year’s conference was of particular importance as it marked the 50th anniversary of Erving Goffman’s text Stigma: Notes on the Management of Spoiled Identities, perhaps one of the most important texts used in early disability studies. While I wouldn’t claim that Goffman was the founder of disability studies, I do believe that the field of disability studies, at least not in its current incarnation, could not exist without the work of Goffman providing such fertile ground of criticism and exploration all those years ago. I met some amazing people and sat in on some spectacular panels, with topics focusing largely on subjectivity, biopower, and the emergent fields of Mad and Autism Studies. I also had the chance to participate in a media-focused panel with three other lovely academics and delivered a short presentation on some of my doctoral research. On the whole, the conference was both illuminating and energizing and I can’t wait to see everyone again at next year’s conference.

See you in Minneapolis!

The (prom) politics of pity

"The politics of pity" written above a royal crown on a red pillowGrowing up with a disability, I have always had trouble navigating social situations. I learned at a young age that people would treat me differently simply because I was in a wheelchair. While some refused to engage with me because of their discomfort with disability, mostly I just found people to be overly optimistic and celebratory, where accomplishing simple day-to-day tasks would be met with cheers, awards and assurances of my bravery and courage. And while perhaps graduating elementary school was the pinnacle of human accomplishment, I couldn’t help but notice that I was the only one receiving this treatment, despite the fact that I was but one of thirty graduating students that year. These other students, “normies” as I call you people, would receive no special awards, would not have newspaper articles written about them, and would not be celebrated as heroes for accomplishing the same thing as me. These students were merely doing what was expected of them, something most of us will accomplish, and apparently there is nothing particularly impressive about that.

While this excessive praise certainly helped boost my ego, it also made it quite difficult when socializing because I was never sure if people were being genuine with me or not. Worse still I remember questioning in that moment if anything I had done was really that remarkable. I was left wondering whether I had ever really done anything significant in my life aside from simply being disabled. Suddenly everything I had done seemed meaningless and I could not tell whether people were really proud of the things I had done or if they simply pitied me—this is some pretty heavy stuff for a teenager to interrogate. As I got older I learned to stop worrying so much about what others thought of me and simply do things that make me proud.

Boy driving electric wheelchair pulling cart with prom date on the back

Just taking this girl to market, nothing to see here

Although acceptance of people with disabilities is certainly increasing, a recent article published on the front page of the London Free Press reminded me a bit of the good old days. On Wednesday, June 5th in a story entitled “A night fit for a king,” Londoners learned of a young man with a developmental disability who was crowned king of his prom for, what appears to be no other reason than having a disability, as the article does little to tell us anything about the individual in question aside from the fact that he’s disabled. This is not something unique to London, as a quick search of Google reveals hundreds of high schools across North America have been electing intellectually disabled students as prom king and queen over the past few years, events also covered as headline news in their respective local media (like here, here, here, and here for example). The real question for me, though, is whether or not this is really “news.” Do any of the other prom kings and queens get front-page coverage? I think you may see the problem here.

While I’m sure the students in London, along with the kids across North America, have the best of intentions with this gesture, simply trying to do something nice for someone they perceive as being hard done by, we cannot ignore the reality that these actions are often imbued with a sense of pity and paternalism all too often faced by the disabled in our day-to-day lives and this practice is made even more degrading by the fact that it is covered as headline news. Worst still, these articles almost never provide any context for why the individual was elected prom king or queen. The result is that these articles then seem to revolve around how “generous” it was of the attractive person to take the disabled kid to prom, as just friends of course, and how “great” it is that the student body subsequently voted them king and queen. Ultimately, the story is not even about a disabled student, but actually about how considerate the student body was for putting themselves aside and bestowing this honour on the poor and needy.

The intention here, admirably so, is to try and make life a little easier for the disabled. These students have grown up being told that life is tough for the disabled and that everyone has the responsibility to help those less fortunate. And while helping the less fortunate is indeed a noble and worthy cause, voting the disabled as prom king or queen is tokenism at its worst and does not make our lives fundamentally better or easier. If you legitimately want to make an individual with an intellectual disability’s life better, for the long-term, then offer them friendship, respect, and compassion. Not pity. Inviting these individuals to prom, and voting them king/queen, does not make up for years of insufficient academic and social supports. In fact, this media circus distracts from the real structural changes that need to be made and let us feel as though this one symbolic gesture absolves us of the responsibility of working toward genuine inclusion. Rather than encouraging our youth to just treating these individuals like royalty for one day a year, why not treat them like human beings every day of the year?

UPDATE: I was just informed the LFP actually published a near identical story, two years ago, about a different school in London (but the same program). You can see it at: http://www.lfpress.com/news/london/2011/06/21/18316356.html