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
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 http://www.raggededgemagazine.com.