PermaDeath’s Superhero

There’s been a lot of excitement and hoopla, (all justifiably so), over the technical achievements of our team of faculty and students from RISD, Becker, and Lesley, in the creation of the cutting edge tech and animation of PermaDeath. But we shouldn’t lose sight of fact that this technology is in service of the story of Sonny, a video game tournament champion, who’s been diagnosed with ALS.  She now uses a wheelchair as the disease, which started affecting her legs, is slowly working its way up her body.  Soon, she will no longer be able to move at all.

Working with experts in ALS and disability to understand more fully what Sonny is confronting on a day-to-day basis has opened my eyes to the world of disability and how little those of us who are non-disabled, know about what people with disabilities face in a world that is obsessed with physical prowess.  The Boston Globe published an insightful article entitled, “Where are all the superheroes with disabilities?” which examines the lack of representation and role models in this genre and in performance art, in general.

We’ve joined the conversation on disability with our hearts and ears open to listen to voices that must be heard.  In partnership with Lesley University, we’re mounting an exhibition of paintings by Jon Imber, a renowned New England artist and ALS patient who continued painting, almost to the day he died, by strapping a paintbrush to his fingers and rocking back and forth.  We’re also hosting a panel on ALS we hope you’ll all come to.

I hope you’re wowed by the superhuman/magical abilities of our avatars in PermaDeath.  I also hope that as we experience the struggle of Sonny to come to terms with disability and death, we’ll come to realize that true heroism is the ability to get up each day and journey on, wherever that may take us.

Related Reading