Learning To Be Disabled

Disability Blog Carnival #48: Capacities and Capabilities

"I can be changed by what happens to me, but I refuse to be reduced by it." -: Maya Angelou

I have been "disabled" now for 10 years. Most people who know me think of me as "strong", "brave", "persevering". People admire me for this; as though those qualities didn’t exist before I became disabled. They admire me for continuing to live and pursue my dreams freely, "in spite of" a spinal cord injury and the chronic pain and depression that accompanies it.

But for me, it doesn’t seem to be so great a thing, such an admirable feat. For me, it was a matter of practicality and realism.You do what you have to do. I am  "strong", "brave", "persevering" but I was BEFORE I became disabled. Those are the things that assist you in finding a way to continue living  instead of curling  yourself  up into a tight ball in the corner of a dark room and waiting to die.

People without disabilities assume that I write, create things, keep moving forward, work at keeping a decently positive attitude, "in spite of" my disability. People with disabilities, admire my resilience and capacity for not allowing my disability to stop me from living and expecting the best I can get from life.

Oddly, no one ever assumes I do what I do and I live the way I live with the attitude I have BECAUSE of my disability.

I have taught myself many things because I am an experiential learner. I taught myself a lot of how to live and be in this world due to a crappy hand in childhood. I taught myself to use computers back in the dark ages. I am a self-taught artist and thingmaker. Becoming disabled was no different. I had to learn how to be disabled because I wasn’t born that way.

True enough, I am not paralyzed. I don’t use a chair to get from point A to point B, it’s true. But, I need a cane and I need a scooter to participate in activities and events that require walking and standing for long periods of time. I need to use a shopping cart to lean on in the grocery store, even if I am only getting one item. There are days when the pain is so bad, it’s all I can do to get through the bare minimum and hope the next day, the next hour, the next minute is a better one. My life was changed and I needed to learn how to cope with the newness of it all.

When I was working full-time and more able-bodied , art and writing were things I poked at when I had the time. Once I became disabled and had nothing but time during recovery from surgeries and in between doctor appointments,they  became the lifeline and the preserver that kept me afloat. When it became clear I was never going to be able to go back to work as I once had, art and writing there to indicate a new path on which to travel. My disability gave me the time and space I needed to forge a new career for myself and this time one I had passion and patience for. I was no longer bogged down by doing the 9-to-5 thing and that left a lot of unfettered, creative energy energy to float among the rocks that rattled around in my head.

More than that though, I had to learn what it was like to be disabled in a culture that worships ability and perfection and a disability culture that viewed me as not "truly disabled".  I have always tossed conformity and convention out the window. Ever since I can remember, I have always
been too much of one thing and not enough of another to fit in most
pigeonholes. Disability, evidently, was going to be no exception. Within able-bodied circles, I was not able-bodied enough and within the disability community, I was not disabled enough or worse, I wasn’t really disabled at all because I hadn’t been born that way. It filled me with consternation and frustration. I was, it seemed, a woman without a country.

So I created my own. The country of Krishanna.

Just as I had balked at accepting the term "alcoholic" to define who I was years before, I rejected "disabled" to define my identity again. So many people get so caught up in labeling their identity that they forget who they are. To define who I am or can by limiting myself to what I can’t do seems to me fruitless. "Disabled" is just one label to describe one part of who I am, just as being a feminist or an advocate, or a cranky artist describe other parts of who I am.

There is no one label for who I am. I am who I am. I am distinctly me and there’s no one else on the face of the planet is that is just like me. Sounds hokey and rote, but it is true. For every one thing I can’t do, there are half a dozen more I can.

Beyond our lists of all we are not and our litanies of all we cannot do, I believe the intrinsic knowledge we are only limited by our imaginations and dreams lies within us; indeed in spite of ourselves.