by Mary Johnson
Published on Tuesday, March 22, 2005 by CommonDreams.org
No; it's not about Terri Schiavo. And it hasn't been for quite awhile.
It's about us.
It's about each of us who thinks "I wouldn't want to live if I were a vegetable." It's about each one of us who thinks, as one blogger wrote, that Michael Schiavo has been "chained to a drooling shitbag for 15 years."
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But it's also about those of us who are those vegetables, those drooling shitbags. Those of us who want to live but know we're a burden to our families. Those of us who fear "do not resuscitate" orders. Those of us who use ventilators, and who use feeding tubes. And those of us who can communicate with clarity only through artificial means.
How can the two groups of us -- those of us who live with severe disabilities, and those of us who fear such a fate more than death -- come to some common ground?
I was recently sent an email from the man who used to read our magazine onto cassettes for blind people. The man, a Vietnam vet paralyzed in that useless war, now cannot speak without a battery operated vibrator. "I sound like R2D2 from "Star Wars,' " he wrote.
Just yesterday a listserv that I frequent was holding a discussion of the type of feeding tube Terri Schiavo had. A number of the folks talking about it were comparing their own feeding tubes to hers.
This is what the Terri Schiavo circus is all about. We may think it's about political posturing -- and it is that, for sure. But it's about those of us who have scary, messy disabilities, and the fears of the rest of us.
The Texas Futile Care Law, which George W. enacted, gives hospitals the right to cut off life support. The progressive blogs are full of the story of the baby pulled off life support under that legislation this past week, against his mother's wishes. But futile care acts are in place in many states -- so common they aren't even controversial. Are we only upset about them when we see them used against a member of what we see as a traditionally oppressed group, and enacted by a man whose policies we detest? States with liberal governors have futile care policies in place as well. The disability rights movement has been worried about futile care policies for quite awhile -- but nobody else took notice. Until now.
Those who bring up the Texas dead baby story want to make the point that the Republicans are two-faced, but we didn't need a dead baby to figure that one out.
There isn't a single disability rights activist I've heard from who is happy that things ended up at such a sorry pass, and who isn't afraid that this will make liberals hate them even more than they now do. Yet it cannot help being noticed that it generally depends on whose ox is being gored as to what side of the states' rights debate one comes down on. We're all for federal laws when it comes to things like civil rights -- and gay marriage. We're not, though, when it comes to things we've labeled as "right to die" -- which we say are "privacy issues."
We might want to take another look at the cost of such privacy.
The disability rights movement I cover is made up of individuals who themselves are living lives that they may not have been able to previously imagine. Individuals who can communicate only via technology -- who, without today's computers, might very well be thought to have little or no cognitive ability. Several of these people, in fact, contribute regularly to Ragged Edge Online. There are people who have experienced aphasia. There are people with brain injuries.
To these people, the case of Terri Schiavo looks very different.
They are particularly angered by the belief that Michael Schiavo knows what Terri Schiavo wants. "We didn't know what Terri wanted," Michael Schiavo told Larry King on Friday. "But this is what we want."
This isn't about Terri Schiavo anymore.
On New Year's Eve a few years back, 74-year-old Shirley Harrison's husband came into the hospital where she'd been brought after having a stroke. He shot her three times in the chest. News media reported it as a "mercy killing."
Three weeks after Nancy Draper's body was found in the freezer of their home, husband Larry Draper turned himself in to police, saying he killed his wife to end her suffering from multiple sclerosis. He received a reduced sentence.
Joseph Brosz, 84, apparently bludgeoned to death Sylvia Brosz, 56, described as his "mentally and physically disabled daughter."
And we all remember Jack Kevorkian, and those who thought the man was doing good. Many of us still think that.
Villanova University history professor Mine Ener used a 12-inch kitchen knife to slice the throat of her daughter, 6-month-old Raya Donagi, who had Down syndrome. Firefighters responding to a house fire in Elwood, Indiana found the burned body of 8-year-old Mark Adrian Norris II. Autopsy results confirmed that Mark, who had cerebral palsy and epilepsy, had actually died the day before -- of malnourishment and neglect. His mother was not charged with murder.
And in England last month, the news was full of the trial of military security specialist Andrew Wragg, who told police he killed his 10 year old son, Jacob, because he was frustrated that his son was no longer able to recognize and communicate with him. Jurors were told he was embarrassed at having a son with a disability.
Yesterday's Ukiah (CA) Daily Journal reported that elder abuse is on the rise - reports of elder abuse rival those of spouse abuse. And families are responsible for most of the deaths of disabled people who are dead by unnatural means.
Although it's hard for us to get beyond the political posturing, get beyond it we must.
It is absolutely true that mounting a Congressional circus was not the right way to go about resolving the problems with Terri Schiavo. But that this is a private matter to be resolved within families? That is just as troubling.
The Republicans, to my way of thinking, are likely guilty of everything we say about them. I even agree with Michael Schiavo that Tom DeLay is a "little slithering snake." But to simply yell about the Republicans, to turn this into yet another skirmish in the right-to-life, right-to-die culture wars is to miss entirely the bigger issue.
The danger faced by "incapacitated" or non-communicative persons -- people who have been declared "incompetent" and their legal rights assigned to a "guardian" -- has been worrying disability rights activists for years. It is not about the "right to life" -- it is about equal protection of the law. Over a dozen national disability groups have repeatedly urged Constitutional review of cases like Schiavo's . It doesn't happen. If it had happened with Schiavo, we wouldn't be at this sorry pass.
Now Sen. Tom Harkin (D.-IA), a man with impeccable liberal credentials, is proposing such a law. Not for Terri Schiavo, but for the rest of us.
"In a case like this, where someone is incapacitated and their life support can be taken away, it seems to me that it is appropriate -- where there is a dispute, as there is in this case -- that a federal court come in, like we do in habeas corpus situations, and review it." Harkin told reporters he was hopeful that Congress would address such legislation sometime soon.
It's past time.
Mary Johnson edits Ragged Edge. Her latest book is Make Them Go Away: Clint Eastwood, Christopher Reeve and The Case Against Disability Rights.
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