[Peace-discuss] Liberals and Schiavo

[C. G. Estabrook]

[Why are some soi-disant liberals so eager to have Terri Schiavo "made
dead," as Ralph Nader puts it?  Because they don't like the people (like
Tom Delay) who are saying publicly that she shouldn't be starved to death?
The view that my enemy finds inimical is my friend? That's a pretty weak
argument.  
	Democracy Now ran a shameful segment today in which they pointed
out that Tom Delay and Schiavo's father both took dying parents off
life-support systems (a respirator in one case, dialysis in the other, I
think) -- without once pointing out the difference: Terri Schiavo wasn't
dying. 
	I'm glad to see that Ralph, Jesse Jackson, Nat Hentoff and others
are willing to speak out against this judicial murder.  As Ralph said, "If
this were a death penalty case, this evidence would demand
reconsideration"; or Hentoff: "In this country, even condemned serial
killers are not executed in this way."  
	Here's a brilliant piece by Harriet McBryde Johnson, a
disability-rights lawyer in Charleston, S.C., who is herself disabled. Her
memoir, Too Late to Die Young, is in the bookshops.  --CGE]

	Not Dead at All
	Why Congress was right to stick up for Terri Schiavo.
	By Harriet McBryde Johnson

The Terri Schiavo case is hard to write about, hard to think about. Those
films are hard to look at. I see that face, maybe smiling, maybe not, and
I am reminded of a young woman I knew as a child, lying on a couch,
brain-damaged, apparently unresponsive, and deeply belovedfreakishly
perhaps but genuinely soliving proof of one family's no-matter-what
commitment. I watch nourishment flowing into a slim tube that runs through
a neat, round, surgically created orifice in Ms. Schiavo's abdomen, and
I'm almost envious. What effortless intake! Due to a congenital
neuromuscular disease, I am having trouble swallowing, and it's a constant
struggle to get by mouth the calories my skinny body needs. For whatever
reason, I'm still trying, but I know a tube is in my future. So, possibly,
is speechlessness. That's a scary thought. If I couldn't speak for myself,
would I want to die? If I become uncommunicative, a passive object of
other people's care, should I hope my brain goes soft and leaves me in
peace?

My emotional response is powerful, but at bottom it's not important. It's
no more important than anyone else's, not what matters. The things that
ought to matter have become obscured in our communal clash of gut
reactions. Here are 10 of them:

1. Ms. Schiavo is not terminally ill. She has lived in her current
condition for 15 years. This is not about end-of-life decision-making. The
question is whether she should be killed by starvation and dehydration.

2. Ms. Schiavo is not dependent on life support. Her lungs, kidneys,
heart, and digestive systems work fine. Just as she uses a wheelchair for
mobility, she uses a tube for eating and drinking. Feeding Ms. Schiavo is
not difficult, painful, or in any way heroic. Feeding tubes are a very
simple piece of adaptive equipment, and the fact that Ms. Schiavo eats
through a tube should have nothing to do with whether she should live or
die.

3. This is not a case about a patient's right to refuse treatment. I don't
see eating and drinking as "treatment," but even if they are, everyone
agrees that Ms. Schiavo is presently incapable of articulating a decision
to refuse treatment. The question is who should make the decision for her,
and whether that substitute decision-maker should be authorized to kill
her by starvation and dehydration.

4. There is a genuine dispute as to Ms. Schiavo's awareness and
consciousness. But if we assume that those who would authorize her death
are correct, Ms. Schiavo is completely unaware of her situation and
therefore incapable of suffering physically or emotionally. Her death thus
can't be justified for relieving her suffering.

5. There is a genuine dispute as to what Ms. Schiavo believed and
expressed about life with severe disability before she herself became
incapacitated; certainly, she never stated her preferences in an advance
directive like a living will. If we assume that Ms. Schiavo is aware and
conscious, it is possible that, like most people who live with severe
disability for as long as she has, she has abandoned her preconceived
fears of the life she is now living. We have no idea whether she wishes to
be bound by things she might have said when she was living a very
different life. If we assume she is unaware and unconscious, we can't
justify her death as her preference. She has no preference.

6. Ms. Schiavo, like all people, incapacitated or not, has a federal
constitutional right not to be deprived of her life without due process of
law.

7. In addition to the rights all people enjoy, Ms. Schiavo has a statutory
right under the Americans With Disabilities Act not to be treated
differently because of her disability. Obviously, Florida law would not
allow a husband to kill a nondisabled wife by starvation and dehydration;
killing is not ordinarily considered a private family concern or a matter
of choice. It is Ms. Schiavo's disability that makes her killing different
in the eyes of the Florida courts. Because the state is overtly drawing
lines based on disability, it has the burden under the ADA of justifying
those lines.

8. In other contexts, federal courts are available to make sure state
courts respect federally protected rights. This review is critical not
only to the parties directly involved, but to the integrity of our legal
system. Although review will very often be a futile last-ditch effortas
with most death-penalty habeas petitionsfederalism requires that the
federal government, not the states, have the last word. When the issue is
the scope of a guardian's authority, it is necessary to allow other
people, in this case other family members, standing to file a legal
challenge.

9. The whole society has a stake in making sure state courts are not
tainted by prejudices, myths, and unfounded fearslike the unthinking
horror in mainstream society that transforms feeding tubes into fetish
objects, emblematic of broader, deeper fears of disability that sometimes
slide from fear to disgust and from disgust to hatred. While we should not
assume that disability prejudice tainted the Florida courts, we cannot
reasonably assume that it did not.

10. Despite the unseemly Palm Sunday pontificating in Congress, the
legislation enabling Ms. Schiavo's parents to sue did not take sides in
the so-called culture wars. It did not dictate that Ms. Schiavo be fed. It
simply created a procedure whereby the federal courts could decide whether
Ms. Schiavo's federally protected rights have been violated.

In the Senate, a key supporter of a federal remedy was Iowa Sen. Tom
Harkin, a progressive Democrat and longtime friend of labor and civil
rights, including disability rights. Harkin told reporters, "There are a
lot of people in the shadows, all over this country, who are incapacitated
because of a disability, and many times there is no one to speak for them,
and it is hard to determine what their wishes really are or were. So I
think there ought to be a broader type of a proceeding that would apply to
people in similar circumstances who are incapacitated."

I hope against hope that I will never be one of those people in the
shadows, that I will always, one way or another, be able to make my wishes
known. I hope that I will not outlive my usefulness or my capacity (at
least occasionally) to amuse the people around me. But if it happens
otherwise, I hope whoever is appointed to speak for me will be subject to
legal constraints. Even if my guardian thinks I'd be better off deadeven
if I think so myselfI hope to live and die in a world that recognizes that
killing, even of people with the most severe disabilities, is a matter of
more than private concern.

Clearly, Congress's Palm Sunday legislation was not the "broader type of
proceeding" Harkin and I want. It does not define when and how federal
court review will be available to all of those in the shadows, but rather
provides a procedure for one case only. To create a general system of
review, applicable whenever life-and-death decisions intersect with
disability rights, will require a reasoned, informed debate unlike what
we've had until now. It will take time. But in the Schiavo case, time is
running out.

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