Tuesday, August 7, 2018

New takes on disability and adaptation

By Louise Kinross

There are so many wonderful media stories on new ways of thinking about disability and adaptation at the moment.

Let's start with this interview with A. Laura Brody in VoyageLA. Laura is a costume maker and designer who "[re-imagines] wheelchairs, walkers, and mobility scooters as works of art," she says. "My interest in mobility devices came from dealing with a former boyfriend's stroke. I was fascinated by wheelchairs, walkers, and any other devices that help people move and adapt. However, I couldn't understand why their designs were so cold, clinical and hideous. They were almost insultingly ugly." 
I pulled the photos above of a wheelchair Laura turned into an Edwardian throne from her website Opulent Mobility.

This afternoon I heard another wonderful CBC Tapestry episode hosted by Canadian singer songwriter Christa Couture. BLOOM interviewed Christa in the spring, after a maternity photo shoot she did with her prosthetic leg went viral. Christa had her leg amputated as a young teen to treat cancer.

Last month Christa did a series of Tapestry interviews on Rethinking Disability. They include a talk with Eli Clare, author of Brilliant Imperfection: Grappling with Cure, who is an American poet and activist with cerebral palsy. "On an individual level, my cerebral palsy is defined as 'trouble,' both medically and culturally," he says. "And yet, I don't have any idea who I'd be without tremoring hands, slurring speech, tight muscles and a rattling walk. So the idea that my cerebral palsy could be cured, in other words taken away as if it never existed, would totally and completely change who I am." This interview blew my mind.

Christa also interviewed Halifax sex educator Kaleigh Trace on how she came to love her body, including a disability she acquired in a car accident as a child. And Christa talked with Toronto's StopGap founder Luke Anderson on the merits of identity first vs. person first disability language. 

The Tapestry episode this afternoon included a candid interview with Amy Silverman, author of My Heart Can't Believe It. Amy is an American journalist who learned she wasn't as accepting of diversity as she thought when her daughter Sophie was born with Down syndrome. "We all have something that rocks our world ... that is a challenge that we think we could absolutely never meet," she says.

Finally, this Tapestry interview with Simon Paradis, a musician who suffered a severe brain injury in an accident, and his wife Kara Stanley, explores how the Canadian couple try to embrace a new normal. "There are moments when I'm playing at a gig, and I look at my left hand and think I'm going to play this Jimmy Page rift that I really like, and all of a sudden my fingers do something completely differently from what I'm actually trying to think of...' Simon says.

I think Christa Couture deserves her own CBC program to explore disability and adaptation.

Here are some other films and articles worth a watch or read.

Between sound and silence, The New York Times
This is a fabulous short film where adults who are deaf describe what it's like to live with cochlear implants.

Children are being euthanized in Belgium, The Washington Post
An opinion piece about three children given lethal injections in Belgium. They included an 11-year-old with cystic fibrosis and a 17-year-old with Duchenne muscular dystrophy.

Matt, Healthy Debate
A fascinating interview with Matt, a young man who becomes a personal support worker for another young man who has quadriplegia and uses a ventilator after breaking his neck in an accident. I'm not sure why Matt's last name isn't identified?

Rich Donovan was the only trader with a physical disability, The Muse
Rich has a new book coming out called Unleash Different: Achieving Business Success Through Disability. Here, he talks about working on Wall Street as a portfolio manager and how he created some workarounds, because his voice can be difficult to understand.

Boy with mystery condition is worshipped as a god, Born Different
A six-year-old Indian boy with disabilities is worshipped by locals who believe he is the reincarnation of the Hindu god Ganesha.