Why Viktoria Modesta doesn’t rethink disability

The Internet has been abuzz over the past week of a new “bionic” pop star, Viktoria Modesta. Modesta’s meteoric rise is thanks to Channel 4’s “Born Risky” campaign, which provides resources and support for “alternative voices” that would otherwise struggle to break into the mainstream. Leading the campaign is Modesta with her song “Prototype,” the beginning of which demands the viewer to “forget what you know about disability.” But for a text that demands the viewer to “forget” what we know about disability, it seems to spend a lot of time marinating in the juices of all-too-familiar tropes and images of disability. Is Viktoria Modesta really revolutionary or is she simply Lady Gaga with one leg?

Contine reading

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.