Saturday, December 08, 2007

Perspective: Where Were We? Here We Are!

I was flipping back through past posts and re-noticed that in January of 2007, someone left a comment on the FRIDA blog wondering why a FRIDA-type response wasn't issued when Terri Schiavo was being killed down in Florida. A blogger named Susan left a good note explaining that, in fact, disability rights activists were involved in the struggle against Schiavo's murder, but the mainstream media chose to ignore us because we were seen as freaks.

One important item for folks to keep in mind is that Schiavo's death in March 2005, together with a rape and a forced sterilization case in the summer of 2005, fed the conviction of FRIDA's founders that we had to do something to stop what was happening to women with disabilities. Hence the formation of FRIDA in the fall of 2005. Most FRIDA members were involved in some way in the battle to keep Schiavo alive, but we were not yet organized as FRIDA. Instead, we worked through other groups, such as Not Dead Yet.

What if FRIDA had been around during the fight for Schiavo's life? Would that fight have looked any different? It's hard to say. There were a lot of cogs in that machine: the in-family battle, the court and legislative proceedings, the right-to-life groups, the anti-euthanasia disability rights groups, and so forth. EVERYBODY had a viewpoint on the Schiavo case. At least a year after she died, I still found Schiavo references most of the times I opened major magazines. Her name is synonymous with one of the greatest moral quandaries of our times: if I become suddenly severely, profoundly cognitively disabled and didn't have any kind of advance directive, should my blood and married kin be allowed to take my life away?

I was reading a blog post by Leslie Carbone ( that basically says that feminism deserted Schiavo to her fate by setting up a system of cultural beliefs and practices that devalued Schiavo as a person. Read it and its comments for an onslaught of conservative perspective. As I read this, I had two thoughts. First, Carbone has an interest in making feminism look bad (it's all about the self above others! choice, choice, choice!). And second, Carbone doesn't connect feminism to disability rights at all. So what I think is that had FRIDA been able to participate in the Schiavo activism in any meaningful way, one thing we may have been able to help with is putting forward the disability angle in connection with feminism.

Speaking as a Deaf woman and disability activist trying to parse out the feminism and disability connection (not as someone trying to speak for FRIDA as a whole...other members may disagree with what I have to say), a fundamental concept I want people to start thinking about is this: no one disability makes someone less valuable simply because of the severity of the disability.

A person who is paraplegic is just as valuable as Terri Schiavo, who is just as valuable as a person who is blind, who is just as valuable as a person with Down syndrome, who is just as valuable as someone who has AIDS, who is just as valuable as someone who has pica, who is just as valuable as a little person, who is just as valuable as someone who has bipolar disorder, who is just as valuable as a person without a disability. Period.

And men and women and intersex and transgender people are all equally valuable as well.

And none of us are really better off dead. (Are you listening, Hollywood?)

I am not in any way going to disacknowledge the fact that disability can make one's life really complicated. Disability can be a real pain in the ass. It can be very painful and/or isolating. So can, depending on the situation, your gender or sexuality. There are ways to deal with this for the empowered individual (and I don't mean taking a ride into the woods in Kevorkian's van or having a friend suffocate you with a pillow). I just think the difficulty lies in our society and systems, rather than in the people themselves. Society doesn't tolerate difference very well, so then we end up hearing things like, "That poor girl is so disabled! She'd be better off dead or in an institution!" Frankly, when I hear that statement prefaced by, "I'm a radical feminist but...", I'm shocked. My response is, "No, you are not. Your pity is an oppressive attitude that I find offensive not only towards whoever you're talking about, but offensive to society as a whole."

How incredibly disempowering it is to hear that "better off dead" or "pity poor Polly" attitude from a sister! In my view, feminism builds community, so this makes me feel like the speaker wants to cut the disability community off at the knees. This is the way I feel when I read a lot of feminist-related criticism of the Schiavo case...because it hardly ever makes the connection to disability empowerment.

Connecting feminism with disability is in reality a powerful tool against the forces that would demote individualism and self-determination. Self-determination is itself an important idea in the self-advocacy movement, the basic idea being that people should be allowed to make their own decisions, whether or not others will judge those decisions as good or bad. We all have the right to make good and bad choices (obviously, there would be an interventionary line drawn at things like self-harm or harming others). I think that actually goes beyond the idea of just having choices...towards respecting the individual's right to growth.

So, going back to the question of Schiavo and FRIDA...could we have made a difference if we had been organized back then? Who knows? What we do know for sure is that because we saw what happened to Schiavo, our resolve has been strengthened. Now that we have FRIDA there is no excuse for any of us to sit back and say, "There's nothing we can do about being a woman with a disability, and there is no one who will listen." What we do need is for our community to continue to work together and keep bringing issues to our attention and for us all to make feminism and disability rights REAL to all people.