I wonder how long it be before people like the Schindlers can argue for prolonging lives of offspring based on proprietary genetic concerns (pharmaceutical companies are out there patenting genes left and right)?

Sheri Lynn–Small world! Those would be my in-laws you’re asking about. They moved to CA late last year. If you want to know more or get in touch with them, you’re welcome to email markkara@mindspring.com (my husband, their son).

My son is high-functioning autistic, high-functioning enough that we are aware that what others perceive as a disability can actually be a great gift. There are sins that will never tempt him, sorrow he will never know. He is the happiest 13 year old I’ve ever met, and has less adolescent angst than the norm. He accomplishes marvelous things because we disregarded the ignorant neurologist who told us, well, lots of horrible, untrue things. Advising us to have him institutionalized. Telling us he’d never be able to make friends or have a meaningful conversation with anyone. :sigh:

He may never decide he’s ready to hold the priesthood, and perhaps he didn’t need to be baptized. (He was baptized at ten, as we wanted to be sure he understood what it meant first.) He may never fall in love, may never marry. We can’t know.

But we’re glad he’s here. I know of other parents whose autistic children are far more profoundly affected. One child must be restrained from hurting himself at all times. He will break and eat glass if given a chance, will tear at his own face. He hardly ever sleeps, and must be confined to an attic room upholstered all over so that he cannot easily hurt himself at night while his parents sleep. From the outside it looks like a dreadful life, horribly stressful. Taking care of a grown person who is disabled is NO easy task. Nursing home care is not always humane, either.

I think I see the disabled as “my” people. My son and I are part of a community that by and large is too busy caretaking to spend much time lobbying and advocating for ourselves. We spend what energy we have fighting doctors and IEPs. The Schindlers have been working for their daughter’s most fundamental human right, the right to life, and we share their heartbreak. What has been done to Terri, “the least of these,” is done unto our Savior as well, and we know it. And those of us who have chosen to take on His name and follow Him–we share these stripes.

Here is an eloquent summary of the facts, written by a lawyer and advocate for the disabled, who knows she may herself face a future not unlike Terri’s–deprivation of speech and voluntary movement, even the ability to swallow and feed herself:
———————————————————————————————————–

Not Dead at All
Why Congress was right to stick up for Terri Schiavo.
By Harriet McBryde Johnson
Posted Wednesday, March 23, 05, at 4:50 AM PT

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
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 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 effort-as
with most death-penalty habeas petitions-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.

9. 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.

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 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, 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.

Harriet McBryde Johnson 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 in April.

Perhaps the parents are just trying to stall and the fact that they didn’t raise this allegation a few days ago probably discredits their claim. But it seems like an awfully bad time for a court to be resting its holding on “waiver” grounds! I understand the need for closure, especially in a case like this. Still, if the parents’ allegations were actually credible, it would be hard to believe justice was done.

It will take me a lifetime to get at the meaning of my daughter’s life. The church considers her “not accountable” but I have always treated her as a free agent, able to make her own decisons, on the grounds that only through exercising free will would her intelligence increase. Sometimes we have had to wait years for her to make certain decisions about how far she would come out into the world, but make decisions she has, rising steadily towards us. Now she’s a music critic! The myth of Orpheus and Euridice pales in comparison.

Yeah.

Tomorrow our children will come home from church with treats, and there will be more treats in their Easter baskets, and we can watch them peel eggs, open little foil-wrapped chocolates, bite the ears off of rabbits…

…but they couldn’t even put a sponge full of vinegar to Terri’s lips as she was dying. A nurse has sworn that she was able to swallow jello…but they’d arrest anyone who tried to give her an ice chip.

I hate it that I’m unable to go stand up with the Schindlers and bear witness to the murder being done. I should be there. I should be standing up to this incredibly evil thing being done not by some Saddam or Hitler in another land, but by the law of MY country.

http://www.ldsmag.com/ideas/050324life.html

Todd: I had the same thought. Here’s Judge Posner’s formulation of the rule.
“[party seeking injunction] must show that it has more than a negligible chance of success on the merits, and no adequate legal remedy. Once this is established, the district court must then consider the balance of hardships between the plaintiffs and the defendants, adjusting the hardships for the probability of success on the merits.” 162 F.3d 463, 473

That said, I read the TRO from Tuesday and it looks like they would have lost under this standard, too.

Still, I agree that Kerr is winning this debate handily. Having studied statutory interpretation together, you know that I don’t look fondly upon arguments that scrap textualism. : )