I am in the process of creating a living will. I hope that people will respect my wishes if I should wind up in Ms. Schiavo's position.
Joanna
Marta Russell wrote:
> 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 challenge.
>
> * 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
> not.
>
> * 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 out.
>
>
> 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.
>
> http://www.washingtonpost.com/wp-dyn/articles/A64571-2005Mar24.html
>