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> Columns > Boston Globe > Activism and the Disabled

Activism and the Disabled

By Cathy Young | April 4, 2005

MAY TERRI Schiavo rest in peace; and may we all, some day, look back at the final days of her earthly existence as a bizarre moment of national madness.

Quite a few Republicans are worried that their party is now acting as the mere political arm of the religious right. Those who sought to "save" Schiavo bristle at this argument, pointing out that their cause was also championed by people who are neither right-wing nor particularly religious most notably, the disability rights groups that joined in the effort to prevent Schiavo's death. True enough; but there is little doubt that religious conservatives spearheaded this effort and made it a national cause.

It is also worth noting that some disability rights advocates have their own brand of extremism: They don't simply seek dignity and access but define themselves as an oppressed minority, turning disability into a cultural and political identity. Such radicals blasted the late Christopher Reeve because, after the accident that left him paralyzed, he focused on promoting the search for a cure for spinal cord injuries. Some in the disabled community berated the actor for being unable to "accept disability" and sending a "disability is bad" message.

The disability rights activists are particularly incensed by the notion that life with severe disabilities can sometimes be a fate worse than death: To them, it's a way of saying that their lives are not worth living. Their anger is understandable, though it can also be harshly judgmental toward those who do prefer death to prolonged incapacitation and suffering. But in championing Schiavo's survival, the activists have taken the extra step of radically expanding the definition of disability to include a permanent vegetative state. Schiavo had no consciousness; she was not a woman with "cognitive disabilities," as some asserted, not a patient in need of therapy and rehabilitation (therapy had been aggressively pursued, and eventually abandoned as clearly futile). Her life was not "unworthy"; it simply wasn't, in any meaningful sense, a life.

Both disability rights activists and conservative champions of a "culture of life" warn that by accepting Schiavo's death, we are heading down a slippery slope toward euthanizing anyone in a wheelchair or in need of artificial feeding. There are sincere and valid concerns that the "right to die" may become a "duty to die" for those seen as a burden to society or to their families. But equally valid, and equally important, are concerns about being trapped in undead bodies ghoulishly sustained by technologies that did not exist a generation ago.

Something else is worth pointing out. It's true that not all those who wanted to keep Schiavo alive were religious zealots. It is equally true that many people of faith supported the removal of Schiavo's feeding tube. On the day of Schiavo's death, Fox News talk show host Bill O'Reilly framed the debate in stark terms of religion versus secularism and put on a minister to defend the preciousness of Schiavo's life followed by an atheist who argued for death with dignity. But why not invite, say, fellow talk show host Neal Boortz, or Methodist elder and conservative commentator Rev. Donald Sensing, both of whom have eloquently defended on religious and spiritual grounds the decision to let Schiavo die? I am an agnostic, but I would like to believe that we have a soul, a divine spark inside us; and it seems to me that there is nothing more degrading to human dignity, nothing more anti life , than to prolong the physical existence of a body from which that spark is gone.

Some pundits have bandied about another, equally false dichotomy: The claim that those who wanted to let Schiavo die had the law on their side while those who wanted to keep her alive had moral conviction. There were moral arguments on both sides. Writing in the Wall Street Journal, conservative commentator Peggy Noonan expressed apparently sincere wonderment at just what passion, other than a morbid obsession with death, could be driving those on the "pro-death" side of this debate.

Well, I can think of a few things to feel passionate about. I feel passionately that I would never want to see someone I love linger on in Terri Schiavo's condition; and if, God forbid, I ever have to make that decision, I don't want Congress or the president or Jerry Falwell or Jesse Jackson sticking their nose in it. I am equally certain that I would not want to be kept alive in such a state. Our personal autonomy is at stake and, believe it or not, some of us get rather passionate about it.

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