Being on Facebook now, oh how I had resisted, I find myself much more informed and aware of what's going on in the world of disability than I was before. As most of the people who have 'friended' me know me because of my work and writing, most of them are connected in some way to the disability community. By browsing through the various posts I become aware of news and information that, previously, never would have made its way into my consciousness.
I am also exposed to all sorts of short, mostly inspirational, films or commercials or clips, about disability. Yesterday, after we had our batch of Banana Bread (made with 7 year old Cuban Rum) in the oven and before we began to make a monster stew, I spent time watching three or four videos in a row. Some were better than others but I did notice something - they all showed, in one way or another, an adaption that had been made, or devised, which made living easier for the disabled person at the heart of the video. To the narrator these little adaptions were astonishing in their cleverness. (I should clarify, that each was clever.) But what has never been properly presented is that 'inventiveness' is at the heart of living with a disability.
Everyone I know with a disability, no matter what the disability is, spends much of their time figuring out how something will get done. It seems like a life-long process. Conquer one thing, and another comes along. I have written before about how my apartment is full of adaptations, many very clever, that make it possible for me to do what I need to do. Adaptation simply is part of disability culture, the disability experience.
I have always believed that those, 'ride around in a chair for an hour to experience how hard it is to be a disabled person' kind of exercises are both patronising and counter-productive. You cannot take a 'tourist' approach to difference. I believe asking someone to write a paragraph without using the letter 'e' is a much better exercise. I know I've written about this before, but I want to revisit this. The whole time the pen is in hand the mind is thinking and evaluating, options - that's life with a disability.
Try it now. Translate this sentence into one that doesn't use the letter 'e':
My home is my castle where I eat and sleep.
It can be done, it takes a little time, it takes evaluating options. When its done, it will probably be different from other adaptions - but that's the way it goes with adaptations.
I'd love it if people started to understand from these clips that while someone's disability is unique, the fact that they live with clever adaptations is not. It just is. I bet every single person with a disability can ream off ways that they approach living with a disability, the adaptations they make. It's part of our experience, it's part of our, dare I say it, culture.
I saw a clip yesterday where a fellow without arms had come up with an adaption which allowed him to eat without assistance. It was cool, it met his needs exactly. It was clever, like all adaptations are.
We are the community of people with disabilities we adapt and we go on.
That's who we are.
That's what we do.
It doesn't make us 'special' as individual, it makes us interesting as a community.
Anyways, how you doing at your sentence without the 'e'? Post it in the comments and tell me if you found it a bit of a mental work out.
SPOILER ALERT: THERE ARE SEVERAL EXAMPLES OF THE 'MISSING E' SENTENCE IN THE COMMENTS, YOU MAY WANT TO WORK ON IT BEFORE GOING TO READ WHAT OTHERS HAVE DONE.