Values

Paul Longmore has an oft-quoted argument on the values of the disability community. I had read it in Eli Clare's Exile and Pride and again this morning in Bodies in Commotion.

He explains these values as

Not self-sufficiency but self-determination,
Not independence but interdependence,
Not functional separateness but personal connection,
Not physical autonomy but human community.

Beautiful.

BADD part 2!

The weekend is here and I finally have time to go and read everyone else's Blogging Against Disablism Day posts.

I will share some of the highlights (for me, at least) and my reactions here.

Ruth at Wheelie Catholic says "It [disablism] can even happen when you’re alone, when you’ve internalized the oppression." This really struck me. When I think of disablism, it's easy to point to substandard medical care, mean jokes, no ramps. I need to remember it's also about times when, alone in my house, I feel somewhat relieved by my able body. I am ashamed to admit that. Disablism isn't always mean, it's also pitying, ignorant, and privileged.

The post that has had the most impact on me was from Blue. She says

So where are the self-reflective posts by nondisabled folks about ability, bodily privilege, fear of people with cognitive disabilities, or even angst about becoming impaired? Where is the recognition of participating in and privileging from an ableist culture?

When I read that, it was a piercing indictment. Those are things I planned on talking about when I started this blog. But it was easier to just blog about the injustices in "the world." Representations in the media. Other people's ableism.

In college I took a class called "Developmental Disabilities and Self-Advocacy." I didn't know how good it would be because it was an online class, but as it turned out, I loved it. One of the activities we had to do was to rank hypothetical disabled and non-disabled people (someone with autism, a Deaf person, a sex offender, etc) in the order that we would want to meet, want to have our children play with, and want to be. In writing about this I said

"In choosing my disability I wanted to still have the capacity to communicate all of my feelings and needs, something I know I could do if I were Deaf, but not sure I could do if I had autism. I also would rather feel like I had “my own self.” I’m not sure how to explain this. But I wanted to have a clear idea of me."

Still today, I must admit, it is easier for me to talk about self-advocacy when we are talking about physical disabilities - although I understand it is equally necessary with cognitive disabilities. It's just with cognitive disabilities, I have more of a fear and less of an understanding. (Through reading a number of disability themed blogs, I have learned a lot.)

Now my close friend has a brain injury and a cognitive disability and I feel like a shitty person. After the accident I remember a conversation with another friend who said "It would really suck if he has to use a wheelchair." At that time we were in denial that the challenge would be bigger than walking. I was shocked by my friend's comment and thought (in self-rightousness) about how being in a wheelchair isn't the end of the world and that I wouldn't have a hard time dealing with disability. Now, 3 months later, I don't even want to think about how many times I have thought "If only you could talk. If only you could just communicate."

Disability and disablism have turned out to be more tricky than I thought. Soon I will put up a post I am working on about privilege and rehabilitation. I hope that others in the disability blogging community will read it and help

I haven't finished reading all the posts, so I might share something later. Although I am pretty exhausted by what I've read and pondered so far.

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.