Tourists!

There were three of us on the bus.

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.

We briefly introduced ourselves.

I learned that both of the others, a man and a woman, had been seriously hurt at work and both had feared that they’d never walk again and now were well underway with physio.

They learned that I had a permanent disability and was on my way to work – two facts that they had a little difficulty putting together in their minds.

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.

They talked about doorways and bathrooms and curbs. They talked about attitudes, without understanding that the social aspects of disability were also an accessibility issue.

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.

They were being mistaken for actual disabled people – they said this, I think forgetting that I was on the bus.

They saw the barriers and the social treatment as a natural consequence of disability and they attributed to disability everything they experienced.

They didn’t see is as bigotry in action or bias in construction, they saw it as ‘this is how it is’ and they wanted escape from that at any cost. And walking was the cost.

I remember many years ago going to see a movie with a plot line about a lesbian woman, Desert Hearts.

I have always remembered a conversation in that film, when the protagonist was fighting with another character who was ‘flirting’ with or ‘play at’ being a lesbian:

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.”

It really struck me then and I knew it would real meaning for me later in my life, and it did. Because that’s exactly what I felt when I listened to this conversation.

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.

They don’t get disability they get the frustrations and imagine the horrors of a lifetime of living with barriers and they long for the end of the hour when they can get out of the chair.

It’s the fact that they can get out of the chair that disallows them the necessity of thinking like an actual person with a disability who sees barriers in a very different way than the ‘tourists’ who throw their hands up in resignation, or who accept the social exclusion and the invisibility that comes with being highly visible as simply a natural result of lower social status.

They get out of the chair thinking that life as a disabled person is what they experienced – and pity is reinforced as the right response, and death is seen as the preferred option.

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.

The same is true of how I live as a disabled person. My life experiences the same barriers as those two on the bus but my experience of those barriers is vastly different than theirs.

I know how to deal with them. I have strategies to live and be joyful as a disabled person.

They did not. Their strategy was simply to bemoan their fate and endure until they stand up and walk away from their experience.

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.

I simply said, “Why on earth would I want that? I’m on my way from home where I’m loved to work where I’m valued. I have no need of this ‘walking’ you speak about.”

I laughed as I said this but all I received was four eyes locked on me in an incredulous stare.