Read "Better Dead Than ..." by W. Carol Cleigh.
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The Terri Schindler Schiavo Crippled Kickball Team
The second and third weeks of October have been a heck of a 14-day ride for the disability rights nation.
We have seen perhaps more writers in our ranks than have ever appeared before. Many of us feel that killing Terri Schiavo is about the genocide of all of us -- and we have reacted accordingly. Thousands of emails to Gov. Jeb Bush alone. Never mind all the letters to the editors, Senators and Congressfolk.
And the opinion pieces.... ayiyi!!! They have been flying around the internet like greased lighting.
I have spent more time online reading the words of my crip cohorts than I should with this old disabled butt and back of mine. But I couldn't resist. I couldn't resist seeing the words roll out of us like a rolling pin on a slanted counter. Couldn't get over our strength and fortitude, was amazed by our stick-to-it-ness. Surely now, I thought, the rest of the country will see how we as people with disabilities turned the tide around on this second attempt to starve Terri Schiavo to death. I was so proud of my community for all we had done. I was exhausted but elated by all we had created.
At first slowly, and then more rapidly, the media began to quote the Right-To-Lifers and the Christian Right. Occasionally I heard a comment about disability rights -- and from the mouth of Jeb Bush himself I heard the concern over the fact that it was a person with a disability being killed here, and what repercussions that could have on other folks with disabilities.
But for the most part we were ignored.
This issue, which is clearly a disability rights, was being framed as something else, with nondisabled authors, talk-show guests and "experts" all over the media.
Then, to add insult to injury, we started hearing the groups that we would like to think are on the side of disability rights, groups that some of us belong to, one by one start to take the side of Michael Schiavo and Terri Schiavo's "right to die."
I was not surprised when N.O.W. didn't sign on to a statement in support of Terri Schiavo and disability rights when our activists at a conference in DC tried to enlist them. . Only a few years ago I had the painful experience of writing a letter to a personal hero of mine, Gloria Steinem, protesting her vote that a humanitarian award go to Jack Kevorkian.
The ACLU's deciding they were gonna support Michael Schiavo -- that didn't surprise me either. They have not been a friend to other causes Not Dead Yet has found important, either.
I think on all the years I spent giving energy to various movements and causes. I gave my all to the women's and queer rights movements. When still a teenager, I was involved in the anti-war and civil rights movements. But since I started using a chair, the progressive communities I'm involved in have discriminated against and excluded me. I have had more tomatoes thrown at me than I can remember for marching for the rights of all these groups. Yet my issues as a financially-strapped crip have never become their causes.
None of those organizations have disability rights on their radar screens. They are all so friggin' afraid of becoming disabled themselves, and their ableism is so ingrained, that they can't even say the word "disabled" -- no, they use those ridiculous terms: "differently abled"; "physically challenged."
If only their ableism would stop there. But it hasn't. ACLU -- and AARP -- have now come out in support of Michael Schiavo, and NPR seems to be sliding towards the side of "kill the gorky crips" too. It is, to say the least, depressing.
How do we as a community deal with all of this? Me, I have had a stomachache for a week now. Sleep is anything but restful. We grieve, we write letters, we talk among ourselves, and each time we watch one of "our" progressive groups embrace the "right to die," we ourselves die a little bit more inside.
Its kinda like bein' the last kid picked for the kickball team. Sometimes you get to be ON the team, but everyone knows you're not really welcome. One can be happy about being on the team, but there's always that mortification at being last.
There is another option: Confront these creeps for the ableist jerks they are. Keep being in their faces, Keep busting down their intellectual, physical and emotional barriers. And, in this instance, keep taking credit for the incredible miracle that we witnessed this week and keep reframing the issue: "It's not Right-to-Life; it's not 'right to die.' It's disability rights!"
My dear disabled brothers and sisters, I am so proud of you, so proud of us. I wish that I could wave that magic wand of mine and make it all right. In my world I have made gold stars for all of you, and then have taken a piece of each of those stars and woven them into a robe for Terri Schiavo so she will know just how much we are with her, fighting along with her, and yes, loving her.
I want to hold us all in arms that are big enough to surround us with hands that are holding cloths of velvet and silk to wipe our tears of frustration and sadness.
I wish there were a way for me to knock some sense into all these liberal, lefty groups that just don't "get" disability as a social-justice issue; that see it instead as a horrible medical tragedy. I pray to have the words to wake them up to the reality of the oppression of people with disabilities -- for, though I have spoken up, and out, to these groups for years now about ableism and discrimination, they are STILL not listening. I vow not to stop until this body has left this plane.
Dear allies in this disability rights nation of ours, let us keep offering each other the strength and love we need to keep on challenging all that is unjust in our crippled paths. These past few weeks have shown us all how strong, loving, and united we can be. Let us go forward from this day on with that reality in our hearts. Let us keep up the pressure, the words, the demonstrations, the civil disobedience until there is no more work to be done. Let us remember the words of Justin Dart: "Lead on!" indeed.
Posted Oct. 28, 2003
"The Belchertown Crip Railroad."
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Your letters about this article
Thanks for this article. Maryfrances Platt's message -- "don't despair about the ableist left; confront and keep confronting" -- was one I needed to hear just now. And I was moved by her image, awarding stars to each of our fighters woven into a cloak for Terri. Ordinarily I brush away such imaging, but not when it comes from someone who works as
hard and fiercely as Maryfrances.
I think Maryfrances Platt is the true voice of the Disability Rights Movement because she keeps her eye on the donut instead of on the whole. As she said at the May Media Meeting: "Although this is about the media, it is REALLY about the fact that they want to incarcerate and kill us." That's where it's at.
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