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'We don't think guardians should have carte blanche to starve and dehydrate people in guardianship, people with severe brain injury, birth defects and Alzheimers.' Read Diane Coleman's remarks before Tampa's Tiger Bay Club.

  Terri Schiavo and the disability rights movement:
Activists pro, con on involvement in Schiavo case

Terri's case doesn't even come close to fitting into what I consider to be the disability rights movement.
Read Alan Toy's article.

Our issues are of no relevance to the 'real' disability rights work that Toy is out there doing.
Read Cal Montgomery's article.

by Mary Johnson

In recent weeks disability rights activists have spoken out for saving the life of Terri Schindler Schiavo. Over 20 national disability groups released a statement Oct. 27 insisting that "Americans who have disabilities -- cognitive disabilities like Ms. Schindler Schiavo -- have rights."

But the disability rights movement has never been accused of being monolithic. Some activists feel the movement should distance itself from the Schiavo issue. Alan Toy, longtime member of the Los Angeles disability community, sent a blunt email to fellow disabled Democrats: "disability rights entail choices, self-direction, opportunities unfettered by discrimination and an equal place in society to give, as well as to take," he wrote. "Terri's case doesn't even come close to fitting into what I consider to be the disability rights movement." (Read complete email from Toy.)

New York City disability activist Marvin Wasserman is equally frustrated. "This is a private family agony," he said in an email . The disability movement "should not develop a 'community position' on such an emotional issue based on who shouts the loudest."

"I'm having a lot of difficulty understanding its relevance to things I strive for every day as an activist," wrote Toy, who called for less emotionalism as well -- though he admitted that "I too get 'flooded' with emotion over little injustices, like able-bodied people parking in spots reserved for people with disabilities."

"Toy is correct in that on the surface it doesn't seem as relevant as other disability rights issues, such as housing or public access," says Josie Byzek, who has covered disability rights issues for Mouth and Ragged Edge and is now works for New Mobility magazine. And the case is, it's true, "markedly different than cases like Bouvia," she continues. ("This is not Elizabeth Bouvia, who petitioned the courts for the right to starve herself, or even Tina Cartrette, another woman with cerebral palsy who was starved to death by her mother," Toy wrote. " 'Saving' Terri Schiavo saves a body, not a person," he said. )

Byzek parts company with Toy, though, in thinking that the movement shouldn't be involved in the issue. " The same society that is slowly becoming accessible and beginning to recognize disability rights in the social arena is drawing an ever smaller circle around which lives are really worth living.

"Housing activists should continue to work on housing," she says, "but the work Not Dead Yet is doing is equally valuable." Not Dead Yet, a group founded to fight the move toward acceptance of physician-assisted suicide, has led the disability opposition to removing Schiavo's feeding tube.

Byzek, like Toy, worries that disability activists appear to have aligned themselves with the "rightwing, Christian pro-life movement."

Toy believes we should stay out of assisted suicide and euthanasia issues for two reasons: that we'll be associated with and co-opted by those on the religious right, and that we should spend our time on 'real' disability issues.
Steve Drake

John Kelly, a Not Dead Yet member from Boston, notes that Toy made a similar argument in an article in an article in the Nov 1999 issue of New Mobility. "In making the anti-assisted suicide -- and by extension, anti-abortion -- arguments one of our community's main rallying points," Toy had written, "we find ourselves aligned with factions of the right wing who are all too happy to trample any number of other constitutional protections into the ground. We become tools of those who turn their backs on the progressive measures we need to maintain an equal footing in society."

But Kelly insists that, even though aligned on the Schiavo issue, "we are no more 'tools' of such allies than the ACLU is the tool of the Catholic Church because of their shared opposition to the death penalty."

Aligning with the religious right would be a mistake; says Byzek; the disability rights movement should be making the case that opposition to assisted suicide must be a progressive civil rights issue. "If the disability rights movement stays ensconced within the progressive movement for civil rights -- except for advocates against physician-assisted suicide --- then we will over time develop two separate movements with two separate ideologies," she worries. "As a lesbian, I will never feel comfortable giving time or energy to any movement that accepts support from the right wing, which works diligently to keep me from having basic civil rights -- and in fact creates social situations that literally cause the deaths of many gays and lesbians--ironically, mostly by suicide."

"It came as no surprise when the message from Alan Toy arrived in my in-box," said Steve Drake, research analyst with Not Dead Yet. "I even knew some of what would be in it, having read the article he wrote on assisted suicide in New Mobility in 1999. In short, Toy believes we should stay out of assisted suicide and euthanasia issues for two reasons: that we'll be associated with and co-opted by those on the religious right, and that we should spend our time on 'real' disability issues.

"The upshot, although he wouldn't put it this way, is that we should all work on employment, housing, education, and transportation issues while the ACLU, the Hemlock Society and others advance their agendas on assisted suicide and euthanasia as a 'right' to be applied to old, ill and disabled people.

"Toy still managed to surprise me, though," said Drake.

Terri Schiavo "will never, can never, choose to do anything ever again in her life," wrote Toy. "Will she be ever moving anywhere, accessible or not? Will she be looking for an attendant who gives her great care? Will she be taking a bus, or learning to drive a van? Will she look for a job? Will she have a say in her survival benefits? Will she ever be voting? Will she ever have any communication whatever about her needs or desires? Again, the answer is 'no.' "

Drake says he didn't expect "such a blatant expression of open bigotry against people with real or alleged intellectual disabilities. I knew that it was going to be bad when he opened his message on Terri Schiavo by comparing the energy and passion in our community in our efforts to save her with the angry impulses one gets when someone unlawfully takes your accessible parking space. Toy is a skillful writer and probably managed to pull off this incredibly insulting comparison in a way that slides by readers unfamiliar with the case."

"Toy would have us believe that the core of disability rights is choice," says activist Cal Montgomery. "Not just any kind of choice, 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." (Read Montgomery's rebuttal to Toy.)

"This message should send a chill down the spine of anyone who considers people with labels of mental retardation, Alzheimer's, and autism as part of our disability community," says Drake. "Toy is saying that only those people who can communicate well enough to articulate choices can count as 'disabled.' This is an argument I've seen often from bioethicists. But it's the first time I've read it from someone who claims to be part of the disability rights community. I hope it's the last," he says.

"It is a simple, yet sad, truth of human existence that people almost universally take up the beliefs of their social position and class, regardless of the oppressive impact of these beliefs," says Kelly. He calls Toy "a self directing paraplegic who desires nothing more than acceptance by normal society, by a majority that has no use for people with more severe physical, or any cognitive, disability.

"All civil rights movements are burdened with the likes of Toy," he continues. " The light-skinned blacks who feel superior to those with darker skin, the power-suit wearing feminists appalled by lesbian activism and sexuality, gay Republicans all too willing to oppress others if they could only join the party."

Kelly calls Toy "a gradualist, an assimilationist" who argues that "we weaken 'our' struggle if we are too extreme. His is the approach of Booker T. Washington: stress independence, work hard, and do not ask for too much at once lest your views be seen as extreme and become counterproductive."

"The Constitution doesn't say anywhere that human rights don't apply to you if you can't vote, ride a bus, or aren't able to communicate your choices," Drake continues. Toy, Drake says, "even makes comparisons between 'training' Terri and training a dog.

"Is that what disability rights is about?" Drake asks. "A club for people who can pay their own way? Take transportation? Produce on the job? What about the rest? What about the group of people in our community whose combination of disabilities makes it unlikely they'll ever be competitively employed?"

"One of my primary ethical tenants as a disability rights activist is to not discriminate against anyone because of their disability," says Not Dead Yet's Maryfrances Platt. "Pretty basic stuff. It's even in the Constitution -- you know, the part about us all being created equal.  It doesn't say that only people with IQ's of (fill in the blanks) are equal, it says all of us.  That means people with cognitive disabilities, like Terri Schiavo.

"How Alan Toy can call himself an activist and not grasp this basic tenet of the disability rights movement is beyond me," she adds. "His words strike me as incredibly bigoted and skewed toward the idea that intelligence should dictate what rights a person should have."

Posted Nov. 16, 2003

Mary Johnson is Editor of Ragged Edge.

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