Wednesday, April 29, 2015

Is riding a wheelchair scary or exhilarating?

By Louise Kinross

When you hear the word ‘wheelchair,’ what comes to mind?

Is it scary and confining, or liberating, fun and even glamorous?

Yesterday I read disability activist Emily Ladau’s piece in
The Huffington Post about a public service campaign called Beware The Chair. To raise awareness of how osteoporosis weakens bones, making them susceptible to breaks, an empty, remote-controlled wheelchair chases people down in a mall and on the street, scaring them. The message? “If you don’t pay attention to osteoporosis, you’re going to wind up in one of them,” says one of the random people interviewed.

The campaign was initially claimed as a partnership between the National Osteoporosis Foundation, the National Bone Health Alliance and others. The two national groups have since distanced themselves from it.

But the Beware The Chair video, with its ominous music, black screens and admonition to “stand up to osteoporosis” feeds into common perceptions of the wheelchair as a tragedy.
Sue Austin, the British performance artist pictured above, told BLOOM she was surprised by people’s negative reactions when she began using a power chair several years ago because of a chronic illness. She was studying fine arts and began a project to incorporate her wheelchair into her art. As part of her research, she asked people what they thought of when they heard the word wheelchair.

Like the images portrayed in the Beware The Chair campaign, what came to mind was “fear, restriction, limitation and pity,” Sue says.

This contrasted starkly with Sue’s experience. “I’d become housebound and my first experience trying a power chair was ‘this is my freedom.’ It means I can get back out into life and into the world and it’s so exciting to be able to zoom along and feel the wind on my face.”

Sue began making art that incorporated her wheelchair, playing with it and painting it. She then learned to scuba dive and worked with Britain's National Health Service to turn a wheelchair into one that could be operated underwater. Her project “Creating the Spectacle” was part of the Cultural Olympiad in London in 2012.

“The ideas attached to scuba equipment are ones of excitement, adventure and expansion,” she says. She wanted to pair these with the wheelchair, taking it places it'd never been before and upending people’s mindsets.

At the Cultural Olympia events in London, people watched Sue move effortlessly underwater like a mermaid—except she did it in a wheelchair.

Motors under her chair propel her forward while Sue steers two acrylic hydroplane “fins” that curve out from the footplate with her feet: up, down, side to side and loop the loop, like a pilot doing graceful air manoeuvres. She appears weightless, unlimited, even glamorous, with her long dark hair waving behind the chair.

“I wanted to open up a new space where people feel the clash of their preconceptions meeting this new image, and it allows people to view a wheelchair in a completely different way,” Sue says.

This is a message numerous disability bloggers have conveyed recently. In
Why using a wheelchair is the opposite of giving up at The Mighty, a young woman with cerebral palsy writes: “Please don’t be afraid of something that’s given me a chance to move along in the world, something so infused with the essence of my being.” And “When I ride in it, I’m not confined. When I ride in it, I’m free. Free and rolling forward.”

This concept of the chair as a part of one's essence fits with a description in a new textbook co-edited by Holland Bloorview scientist Barbara Gibson called
Rethinking Rehabilitation. A chapter in the book likens learning how to use a wheelchair to making it a part of your body. “As a person is learning to do wheelies, she is also learning to use her body via the chair, thus transforming her body to include possibilities and limitations afforded by the chair…In this re-embodiment process, her body is the chair, the chair is her body; she doesn’t ‘have’ a chair—rather she is enwheeled.”

But too often people view the wheelchair not as a natural extension of a person's body, but as an unwelcome contraption that weighs them down.

Parent blogger Mary Evelyn writes about taking her toddler son with spina bifida out in his wheelchair and being stared at as if she’d dressed him in a clown costume with a big red nose. In
Want to know what it’s like to go out in public when your child’s in a wheelchair? she writes “ are not invisible. You do not blend in. And you’re afraid that if you reveal even a hint of discontent, all those strangers behind all those watchful eyes will think one thing–“Well, of course she’s stressed. Not surprising, really. It can’t be easy… after all, look at that baby of hers.”

How do you change the storyline about wheelchairs?

Read an earlier interview we did with performance artist Sue Austin.


The fact of the matter is that most people would like to avoid being wheelchair bound if possible, with the exception of those who are in enough discomfort not using it, that it comes as a relief. My MIL wanted to be in a wheelchair for years before she finally ended up in one for most of her moving around, and it made things easier for her How to make something that is considered loss to be attractive to those who are not literally feeling the need, is going against the grain.

I am not wheelchair bound, and would do a lot to avoid it. That Osteo ad would hit me exactly the way intended. The problem is that it also reinforces the dread of those circumstances that many stuck in. The positives of a wheel chair for someone who doesn't need one are not the kind of things one can advertise without getting into trouble. Being wheelchair bound is something most of us would avoid if at all possible.