Saturday, 12 July 2014

Scuba diving in a wheelchair? Come on, I know you want to....

Last time in my blog I talked about the 2 models of disability - the social model and the medical model. You can read that post here, but to recap quickly basically the medical model says that disability is caused by the limitations and symptoms of their physical conditions, for example, if someone is in a wheelchair and is unable to go up a flight of stairs it is seen as a consequence of their disability. The response to this is to try and normalise the person as much as possible, through operations, medication, hearing aids or cochlear implants etc.

The social model on the other hand believes that disability, is at least in part, caused by the world not adapting to suit their needs; it is the steps that are seen as the problem, and the answer is to make a world in which not being able to use your legs isn't disabling or limiting. 
The answer to deafness would no longer be to make everyone have cochlear implants, but to raise awareness of what deaf people need, and to have more users of sign language so their deafness is no longer a problem for them.

But it is not only that physical world that needs to change to stop creating disability, it is also he world inside people's heads. It's about changing the perception of disability, changing attitudes and emotional responses. 

This is all very abstract, let's bring it down to individuals, one individual: Sue Austin. 

Following an illness which profoundly affected her mobility, Sue finally got an electric wheelchair. For her the experience was amazing:

"it was a tremendous new freedom. I'd seen my life slip away and become restricted. It was like having an enormous new toy. I could whiz around and feel the wind in my face again. Just being out on the street was exhilarating ... But even though I had this newfound joy and freedom, people's reaction completely changed towards me. It was as if they couldn't see me anymore, as if an invisibility cloak had descended. They seemed to see me in terms of their assumptions of what it must be like to be in a wheelchair. When I asked people their associations with the wheelchair, they used words like "limitation," "fear," "pity" and "restriction."

Until in the end:

"I realized I'd internalized these responses and it had changed who I was on a core level. A part of me had become alienated from myself. I was seeing myself not from my perspective, but vividly and continuously from the perspective of other people's responses to me"

And so she set about challenging these perceptions, by creating beautiful works of art with her electric wheelchair. And then she did something extraordinary: following her decreased mobility she began scuba-diving, and found in it a freedom of movement that only her electric wheelchair had been able to offer. But people's reactions to that were so different, scuba diving is seen as an adventurous, exciting, the wheelchair as limiting, fearful. So she made a scuba diving wheelchair! When she showed the film of it to people, their attitudes changed to joy, and even envy cause it looked just so damned cool. She had reframed their concept of wheelchairs by putting them into an entirely different context.

"because in that moment of them seeing an object they have no frame of reference for, or so transcends the frames of reference they have with the wheelchair, they have to think in a completely new way. And I think that moment of completely new thought perhaps creates a freedom that spreads to the rest of other people's lives. For me, this means that they're seeing the value of difference, the joy it brings when instead of focusing on loss or limitation, we see and discover the power and joy of seeing the world from exciting new perspectives. For me, the wheelchair becomes a vehicle for transformation"

I've had a similar experience to Sue: when I eventually bought a wheelchair, the freedom it brought me was amazing. But peoples negative reactions to  in the end made me feel negatively about it myself, and about my disability in general.

We need to create a new narrative of disability. We need artists (like Sue Austin) writers, and filmmakers to create this alternative narrative and smash preconceptions. But how do we do that? Where does the old narrative come from? What should the new narrative be? HI think one of the best ways of answering for these questions comes from looking at other minority groups whose narrative has changed dramatically which I'll be looking at in my next post.