[Marxism] Schiavo: Overlooked in the Shadows

Lueko Willms l.willms at jpberlin.de
Sat Mar 26 13:42:00 MST 2005

## Nachricht vom 26.03.05 weitergeleitet durch Lüko Willms
## Original-Nachrichen-ID: d24cib$127i$1 at pencil.math.missouri.edu
## Ersteller: ruthannes at earthlink.net

## ------ Vorbemerkung des Weiterleiters -----------------------

   I found this article which appeared originally in the US-american  
daily "Washington Post", written by a person who is herself an  
attorney for disabled persons.

   It was sent out on a mailing list "Disabled Greens"

Lüko Willms

## ------ Ende Vorbemerkung des Weiterleiters ------------------
## -------Es folgt der Text der weitergeleiteten Nachricht -----

The following op-ed comes from The Washington Post,
http://www.washingtonpost.com , as reprinted from Slate
magazine, http://www.slate.com/

Overlooked in the Shadows
By Harriet McBryde Johnson
Friday, March 25, 2005; Page A19
The Washington Post

The Terri Schiavo case is hard to write about, hard to think about.
Those video images 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 beloved -- freakishly, perhaps, but genuinely so --
living 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 Terri Schiavo's abdomen and
I'm almost envious. What effortless intake! Because of 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:

* 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 denying her
food and fluids.

* 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. That Ms.
Schiavo eats through a tube should have nothing to do with whether
she should live or die.

* 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 at present 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.

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

* 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 such as a living will. If we assume that
she is aware and conscious, it is possible that, like most people
who have lived with a 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.

* 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.

* 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 non-disabled wife by denying
her nourishment. 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.

* In other contexts, federal courts are available to make sure state
courts respect federally protected rights.  Although review will
very often be a futile, last-ditch effort -- as with most habeas
petitions from death row -- federalism 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

* The whole society has a stake in making sure state courts are not
tainted by prejudices, myths and unfounded fears -- like 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

* Despite the unseemly Palm Sunday pontificating in Congress, the
legislation enabling Ms. Schiavo's parents to sue did not reflect
a taking of 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 her federally protected rights
have been violated.

In the Senate, a key supporter of a federal remedy was Iowa's 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 dead -- even if I think so myself -- I
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. 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

The writer is a disability rights lawyer in Charleston, S.C. Her
memoir in stories, "Too Late to Die Young: Nearly True Tales From
a Life," will be released next month. This article is reprinted
from Slate magazine.


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