Image Description: A pathway through a park with a wheelchair being pushed along it. Only the hand pushing and the wheels are pictured.
All of us were in manual wheelchairs.
Two, picked up at different spots and meeting for the first time, were both going for physiotherapy at a local hospital, and me going to work.
They then fell into conversation with each other. They briefly touched on the fears they had that the disabilities they were experiencing would be life long but then moved on to talking about their experiences in the wheelchair. What they talked about would surprise no one in the community of wheelchair users. They talked about barriers. They talked about inaccessibility.
Frustration and anger were expressed at how they were isolated and ignored while being in the chair, they were angered that people thought of them as disabled while in fact they were just using the chair and would be returning to the world of the walking.
I remember many years ago going to see a movie with a plot line about a lesbian woman, Desert Hearts.
Cay: Listen, you’re just visiting the way I live. I guess it would suit you find to hide in that hotel room until your train leaves.
Vivian: Oh, then let’s hire a float. You are so insistent on making everyone think the way you do
Cay: Oh, yeah. You’re making real headway in that department!
Vivian: No fear, no confusion, so self-assured.
Cay:I don’t act that way to change the world. I act that way so that the goddamn world won’t change me!
I really liked the whole conversation so I’ve put it here, but it’s the line “Listen, you’re just visiting the way I live.”
I tried, several times, to enter the conversation to bring a real disability perspective to what they had to say but my attempts were rebuffed, they were not interested in a disability perspective – they wanted to share their experience with each other, as valued people who were temporarily experiencing being devalued. So I gave up and simply listened at the periphery of their conversation at the margin of their attention – as they did to me what the were furious at what others did to them.The irony of this lost in the passion of their discussion with each other.
This confirmed in my mind the danger of those ‘let’s experience disability by riding around in a chair for an hour’ exercises.
Disability isn’t a tourist destination, it’s a permanent move. And everyone knows that it’s different to visit New York City than it is to live there.
I don’t walk away from disability.
I live with it, mostly the same way everyone lives with everything, in my own way and experiencing love and pain and the whole damn thing.
They got off the bus before I did, as they did one of them said that they wished that I was getting off too and that I had walking in my future.