Constancy

On our trip down to New York City, we stopped to grab lunch at a Wegmans. We love their buffet and the chance to roll around and shop afterwards. There were a couple of things I wanted to pick up for the kids so I headed off on my own to look around for them. I was enjoying being out of the car and freely rolling myself down the long aisles. Just to stretch my arms and to feel movement is great after the confinement of the car. I like to find an empty aisle and 'run' down it. Getting the wheelchair going as fast as I can and then making a sharp turn at the end. It is just plain fun.

I pulled up short as a woman stepped into the aisle just before I got to the end. She smiled at me, sadly of course, and said, 'I was in a wheelchair once for a couple of weeks ...' pause, 'I just feel so sorry for you.' I didn't want to get into a discussion, I just said as pleasantly as I could, 'Well, it's fine for me.'

What worries me is that people who've experienced temporary disability cannot understand, though they wouldn't understand this either, disability. And because they don't actually understand disability, while thinking they do, they misrepresent my experience and the experience of the majority of those of us with disabilities. Using a wheelchair for two weeks is just, well, using a wheelchair for two weeks. It bears little to no resemblance to being a wheelchair user. All you learn in two weeks is how inaccessible the world is. Good, I suppose. But wheelchair use is about way more than dealing with barriers. It's way more than dealing with stares and prejudice and dumb questions. It's also about living a full and good life on wheels.

When I first got into a wheelchair, I admit to the typical frustrations. Frustrations that have not disappeared with time. Inaccessible buildings, stores with narrow aisles (or wide aisles blocked by displays), attitudes that exclude and, of course, the stares. But those things, which were the foreground of my experience when I began using the wheelchair have very much become like background noise. A constant low buzz of annoyance that only comes into sharp focus from time to time.

My experience of the wheelchair, six months in, was very different than my experience six days in. Within that time, knowing I was staying in not getting out, I adapted. I don't believe that those who are getting in knowing they are getting out ever bother to do the cognitive work involved in adapting. I had to shift my world view, I had to examine how I really felt and distinguish it from what I thought I was supposed to feel and what I expected I would feel. That's work that's tough for anyone. But that examination led me to understand that my expectation of a life limited and a life proscribed wasn't my actual reality. My life had changed but, really, in ways that mattered less than I'd imagined. I got around differently, I wasn't different. That surprised me.

Those 'trainings' where they have someone spend an hour in a wheelchair do more harm than good. They solely instill fear, pity and gratitude (for non disabled status). You can't visit another's world and understand it. Being a 'tourist' in the world of disability simply gives you the odd sensation that every tourist has - gratitude to get back home. So putting on a blindfold for twenty minutes and attempting to make tea may 'titilate' but it doesn't educate. Same with putting cotton batten in one's ears and trying to hear a conversation. These exercises, and those that do them, don't understand the insulting nature of what they are doing. Suggesting putting on 'black face' to experience racism would be met, appropriately, with derision. But getting in a wheelchair for a couple of hours is met with 'wow, what a good idea'. No, actually, its not.

My surprise at discovering 'life' in a wheelchair would surprise her too. The woman shopping who thought she understood disability because of experiencing two weeks in a wheelchair. She learned that the world could be a frustrating and inaccessible place. She didn't learn, and this is surprising to most, that those frustrations and that inaccessibility don't define the life of a person with a disability. They are 'constants' ... true. But there are other constants ... and though it's tempting to list them here - I'm guessing that they are different for each and every person with a disability. But one constant, that I expect is universal, is the ability to experience joy. A wheelchair doesn't preclude joy, happiness or even ecstasy.

And some of the joys are simple.

Like rolling quickly down and aisle in Wegmans.