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by Cal Montgomery


Terri Schiavo and the Disability Rights Movement


Whose movement is it, anyway? continued

Third: respect for the woman and family around whom this struggle has arisen. The Labor Day mawkfest was barely two months ago, and many people are still smarting from the annual insult of Jerry Lewis's insistence that he has the right to describe an experience he does not share -- the experience of lifelong wheelchair use -- according to some lurid fantasy in which he has all his own values, but is, according to those values, diminished. Half a person. By the Lewis standard the "learning to drink while asleep" meditation holds up admirably; but that's not the standard we should be using.

Nor, for that matter, does equating feeding a human being to damaging a paint job demonstrate any respect for Terri Schiavo or those who love or loved her.

Publishers continually crank out books about the tragedy of disability, of which most may be classified as memoir by proxy: Nondisabled writers write not as representatives of their own experience (or observers of others') but from the imagined experience of someone who has not licensed the portrayal. The best of these grapple with the limits of what the proxy can know, and struggle with the complicated responsibilities that arise when the choices seem to be either "speaking-for" or allowing the experience to go totally unrepresented. The worst, by writers who prefer spectacle to truth, invite nondisabled gawkers to a sideshow starring an alien mind in an alien life.

A unity bought by disenfranchising the very people you seek to unify isn't worth the price.

It is this latter tradition on which Toy draws in his imaginary disability simulation, and it is no less offensive because it's "one of us" doing it.

All this would be bad enough, but it isn't just reason that Toy distorts beyond all recognition. It's the disability community and the disability rights movement.

I suppose I might be wrong. I didn't know any of the now-deceased founders of the movement personally, so I can't say with absolute certainty that the legacy they meant to leave wasn't one of exclusion rather than inclusion, hierarchy rather than egalitarianism, and an imagination that was meant to open the world to certain kinds of people and then slam shut forever. I can say that if that's what they did leave for us to build on, if Toy is right, it's a piss-poor excuse for a heritage, and it's time for us to start over and do it right.

Toy would have us believe that the core of disability rights is choice. Not just any kind of choice -- not the kind of choice exercised by the people Dave Hingsburger writes about in First Contact, people who look, from the outside, very much like Terri Schiavo -- but the kind of choice exercised by people who can expect to have their own homes, drive cars or ride buses to work, and vote. In other words, people who just happen to be well-served by the independent living movement as it exists today.

The rest of us apparently have no place in the disability rights and independent living movements, now or in the future, and our issues are of no relevance to the "real" disability rights work that Toy is out there doing. Oh, no?

I know it's not only crips who do this, who stake out traits common to their own constituency but not possessed by all disabled people and insist that these are the foundation of disability rights, disability culture, disability pride. Maybe we can't do this, but we can do that -- and isn't that what really counts? But -- and this is due in great part to the accomplishments of great crip leaders -- it's crips who've done the best job of staking out disability and cross-disability in the public's imagination and in their own. So although there's no shortage of crips in whose company I am proud to work, when the rest of us want access to the resources that have been collected in our name by people who're devout one-in-fivers when it comes to sucking up what money and power there is to be had and a whole lot narrower when it comes to spending it, it's crip chauvinists, rather than that common to any other diagnostically organized subcommunity, who are most likely to bar our way.

I do not believe that Toy's idea of the movement, which excludes disabled people on the grounds that they are disabled has any right to the name disability rights. It sure doesn't deserve the word equality because it insists on a hierarchy that regards some people's parking privileges as more important than other people's lives. And I do not believe that it has any right to the word justice. Crip chauvinism isn't the one true faith of disability rights no matter what anybody says; it is an attempt to hijack and distort the movement. To pile inequity on injustice on oppression and paint it up nice.

I believe that, at root, the disability rights movement asserts -- if it has any claim on our labor and our love -- our right to benefits of society that nondisabled people already have (or should have, were it not for other injustices that coexist with ableism). In a just world we wouldn't need these movements only because in a just world the work would already be done. If nondisabled people cannot imagine a society in which crips are full members, that's no excuse. If some crips cannot imagine a society in which Terri Schindler Schiavo -- Terri Schindler Schiavo right now, not only before brain damage or after successful therapy -- is a full member, that's no excuse either.

This assertion includes challenging systems that unjustly exclude or disadvantage people on the basis of disability. It includes challenging the insistence that, because disability is supposed to be about biophysiological difference, the medical profession has a right to rule our lives (in light of the need to take back control of disabled lives from physicians, Toy's insistence that we accept their rulings without question is particularly ironic).

It also includes challenging rules of the form "you gotta be able to do this before you'll be allowed to do that."

Are there pairs of thisses and thats that are defensible, that we'll accept? Absolutely. You gotta be able to fly a plane before you'll be allowed to work as a pilot. But disability rights is about subjecting that sort of rule to scrutiny, broadening the thisses -- "gotta be able to read "becomes "gotta be able to access information with or without reasonable accommodation" -- and narrowing the thats -- "work" becomes "hold this particular job." And the part of the independent living movement that overlaps with the disability rights movement is about challenging these rules where the thats are about living our own lives our own way. You gotta be able to get on the toilet by yourself to live in your own home? No, you don't. You gotta be able to meet crip standards to have disability rights? Hell, no.

Then what about this-that pairs which some of us support and others oppose? We're a diverse people suffering ableism in diverse forms: we need to expect disagreement. We need to plan for it, we need to struggle with it, and then we need to live with it. Too much tolerance for dissent and the movement shatters; too little and it suffocates. In neither case can we make things better, much less make them right.

Principled disagreement rooted in shared values may unnerve the Toys of the world. Hell, sometimes it unnerves me. A call to silence anyone who doesn't agree with "leaders" like Toy terrifies me. How's that for emotion? But I have my reasons. Suppressing dissent is a standard chauvinist move. The issues on which we are expected to agree with them are said to unite us; where there is disagreement the issues are said to divide us. And the answer to that division? A call for anyone who has a different conception of disability rights from the chauvinists in question to immediately stop what they're doing and get back in line.

Too many of us fought too hard for too long to get out of other people's lines to buckle under now.

So, to the Toys of the movement: do you say that your chauvinism is the only way to achieve unity? Then I say to you that a unity bought by disenfranchising the very people you seek to unify isn't worth the price. Do you say that your chauvinism is the only way to achieve equality? Then I say to you that a movement founded on inequality can never achieve equality, and those who insist on presiding over their inferiors will find their positions unmoored when we depart from under them to pursue justice.

Do you say that your chauvinism is the only way to decide what work should be done? Then I say to you that when you have work to be done you will find the workers gone off to other labors. Do you say that your chauvinism is the only way? Then I say to you: understand that in your failure of imagination you are making yourselves irrelevant to the vast majority of disabled people, and to the rising tide of disability rights. Go off and key cars in the name of parking lot access if that's what you want to do. Believe everything doctors tell you. Find some like-minded individuals and unify yourselves all you like. But don't expect that the rest of us will subscribe to your unity, bow to your experts, or accept your desiccated idea of what we should be fighting for.

And to those of you on the front lines in Florida: thank you.

Posted Nov. 16, 2003

Cal Montgomery says, "I use a wheelchair, an augmentative communication device, and a helmet. I don't use buses, drive cars, live alone, or speak. I don't expect to learn to do those things. I sometimes go for days without remembering to eat; I sometimes get lost within two blocks of my home." She doesn't recognize faces. She's done years of time in institutions, both big-campus and group home. She's been in mechanical and chemical restraints. She says that at times she's been judged to be too low-functioning to consent to or refuse medical treatment, benefit from education, work in a sheltered workshop or register to vote.

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