Tuesday, May 1, 2007

Ally and Friend

As a part of Blogging Against Disablism Day 2007 I want to talk about changes in this blog and in my life.

I started this blog as an ally, an activist. I had many things to say, to ask, to discuss about disability studies and rights and representations and policy. I had great intentions, as most bloggers do. I certainly did not run out of things to say, but at the end of last year my job got busier and the holiday season came quicker than I was ready for.

I was gearing back up to start again, meaning to talk about the DOJ report on the Lubbock State School (mentioned briefly here) and, of course, Ashley X. I even had some drafts going.

However, in the beginning of February, things changed. My close friend (let's call him C) sustained a severe traumatic brain injury. Suddenly disability was at once much more personal, and yet much more foreign.

On one hand, things that I once considered in theory were happening here and now. The brain damage was severe - the doctors said C would never wake up from his coma. If he did, he probably would be in a vegetative state for the rest of his life. End-of-life issues were now immediate issues. Even with hope and positive thinking, we didn't know if C would be able to move or communicate. Then what? What does it mean when people do not look or act or talk like us? Should "we" try to fix "them?"

On the other hand, I could not really think about disability issues and rights, something I am usually very passionate about. Living in the ICU, it's hard to imagine a "social model" of anything. I wanted to be able to use the things I knew about the world of disability - to have a framework to understand all of this (in case you are wondering, there is little understanding when it comes to brain injuries). But I couldn't seem to apply what I knew. Obviously I love C, regardless of ability, but I felt a crushing loss about his injury. Even though C was still here, I was grieving. Would he ever be the same C?

This is why I want to blog against ableism. I think ableism comes from ignorance and fear. In my experience, the acquisition of a disability has come with a lot of both. I hope we all can lessen these things in society. I hope by exploring and talking and learning we can provide a better framework for when disability becomes personal. There is not just a certain set of people that is affected by disability issues. It effects all of us. At any time anyone can become disabled, become a caregiver, a decision maker, a friend of someone with a disability.

Which is what I consider myself now, a friend. My blog title identifies me as an ally. Which used to mean someone who supports the rights and self-determination of people with disabilities without necessarily having a direct stake in the game (which is not to say I didn't have friends with disabilities). But now I also consider myself a friend. I have a more personal stake in this. Or, rather, I am more aware of my personal stake in these discussions.

(As a side note, C surprised all of the medical experts and woke up. Consciousness, movement, and communication are all continuing to improve. I am continuing to learn how to cope.)

With that, I'd like to reopen my blog.

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