It startles me what so many other people see, when they see me. When they look into my eyes they don't see the reflection of journey to come, they see the reflection of something much different, much sadder, much lonelier. When they look at me they see a body and a chair. When they look at me they have their own narrative about what that means. They have assigned that image unshakable meaning.
"So sad that you are confined to a wheelchair, it must be so hard," said to me by someone who knew that I lived in Canada and that, at the moment, was in another country. That's not very confined. They had never left their state, not gone but 50 to 60 miles from where they grew up. But in their narrative, I'm confined. It suits them better for some strange reason. I try to explain the wheelchair as a vehicle for liberation. I meet dead eyes.
Watching a clip on Facebook of a young girl who is an astonishing gymnast. She has one leg and uses a prosthesis to enable her to participate. The narrative used to present her was that she hasn't let the prosthesis stop her from accomplishing her goal. I harrumphed at her story being stolen from her. The prosthesis exists to make her dreams possible. It does nothing to hold her back. Without it she'd not be doing what she does. Why is her journey and her story not see from her eyes.
What we see, as disabled people, when we see our lives, seems to stand in harsh contrast to what people see when they see our bodies, our disabilities, and enabling adaptations.
Part of the reason I write this blog is simply to remind myself that my journey is my journey and my life is my life. To remind myself that I don't live in the reflection of another's eyes, but I live in the world I see from mine.
We have barriers, as disabled people, both attitudinal and structural, but we also face barriers when trying to tell our own stories, to have them heard and understood. We have been mythologized into sad creatures who do well to gather dust. As we fight for a world that's accessible we also have to fight to be seen, really seen, and to be heard, really heard, because it matters that we are real, vital, people who never, ever, ever, need dusting.
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I have started quilting as a hobby. I'm a wheelchair user, so I am trying to find a block design of a wheelchair. No matter how I word the google search, eg 'a quilting block that shows the disabled symbol' - I get patterns for how to make a quilt to lay over the lap of a person in a wheelchair.
Not that there is anything wrong with being a person in a wheelchair who needs a lap quilt, but I am not that person! There is another narrative besides that! I want a quilt that has one block that displays my pride in my identity as a disabled person and wheelchair user.
It looks like I'm going to have to design it myself.
I’ve been lucky in that most of my friends and family have been very supportive of me becoming a wheelchair user, and those who aren’t have learned not to say so to me! I think it’s because they all watched me get less and less mobile and consequently saw my world get smaller and smaller until I could barely leave my home. Since I got my power assist chair last autumn I have gone away for half a week on my own twice and done a few days out/overnight trips too. So they all see what a difference that’s made over my manual chair too.
However I still run into a lot of strangers who can’t wait to tell me how sad and small my life is, who refuse to acknowledge that I am out with people (because us tragic disabled folks can’t possibly have people who love us) and who like to pat me on the knee/shoulder and tell me how brave/inspiring I am and how they will pray for me. It’s exhausting to be constantly seen that way and it does make me wary of going out some of the time. I just want to do my thing and spend time with my loved ones, I really don’t want to have to constantly educate small minded people. Whenever I feel that way I remember reading here that being in public whilst disabled is a political act, and I think about the fact that by going out and just living my life I am helping other disabled people. I have two nieces I adore and if either of them should become disabled I don’t want them to have to deal with this shit, so I need to do my part in making the world a more accepting place just like the previous generations of disabled people did for me. It’s thanks to them I am able to live in the community, that I am able to access the services that help me, that we have accessibility laws etc. So I can paste a smile on my face and tell someone that actually my wheelchair is awesome and that I really don’t need or want their pity. I know I’m not going to change everyone’s mind, but I can change a few and they will change the minds of more.
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