Who speaks for Terri Schiavo?

[deek]

"We didn't know what Terri wanted," Michael Schiavo told TV's Larry King on Friday. "But this is what we want."

~snip

Most of us who are not disabled cannot imagine "living like Terri." But the disability-rights movement is made up of individuals who themselves are living lives that, previously, they may not have been able to imagine, either. Individuals who can communicate only via high-tech devices have said they were long thought to be unable to think or feel. People who have experienced aphasia, people who have had strokes and people with brain injuries communicate similar things.

~snip

"It's one thing to refuse a feeding tube for ourselves, but it's quite another when someone else makes that decision," says Diane Coleman, head of Not Dead Yet, a national disability-rights group. "Disability groups don't think guardians should have carte blanche to starve and dehydrate people with conditions like brain injury, developmental disabilities -- which the public calls "birth defects" -- and Alzheimer's. People have the right not to be deprived of life by guardians who feel that their ward is as good as dead, better off dead or that the guardian should make such judgments in the first place.

More than two dozen national disability-rights groups -- including the American Association for People with Disabilities, the National Coalition on Self-Determination, Self Advocates Becoming Empowered and the World Institute on Disability -- have been worried about the Schiavo case. Many have been following this case for years, feeling that crucial questions remain unanswered. The case echoes other, less public ones: It's a rare week that passes without some report of a spouse killing his or her elderly mate, or parents ending the life of their disabled child. Is it any wonder disability- rights activists are alarmed? Guardians too often value the life of their ward far less than the ward values his or her own life.

~snip

"There are a lot of people in the shadows, all over this country, who are incapacitated because of a disability," Sen. Tom Harkin, D-Iowa, said to reporters on Saturday. Harkin, who has worked on disability-rights issues for decades, said "there ought to be a broader type of a proceeding that would apply to people in similar circumstances ... 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 and make another determination."

As the Schiavo case so tragically proves, it is past time for Congress to pass a law requiring this review process.

http://sfgate.com/cgi-bin/article.cgi?file=/c/a/2005/03/22/EDGEPBSQDM1.DTL

[teenagebambam]

1. Terri Schiavo has HAD a "review process"...

...through the court system. TWENTY TIMES. The decision to remove her feeding tube was NOT Michael Schiavo's, it was the court's. Michael Schiavo could not reverse that decision if he wanted to.

[Teaser]

2. Schiavo is disabled. She is dead.

She has no brain. Not everyone understands this, and they need to be educated. But it is a fact.

[DemBones DemBones]

15. If she had NO brain, she would be dead. nt

[Lindacooks]

3. Plenty of people spoke for Mrs. Schiavo,

including a guardian ad litem, many witnesses, and carefully adjudicated cases spanning seven years with 19 judges (now 20 judges, with the recent decision not to reinsert the feeding tube). That's what the court system is for, and this is possibly the most thoroughly adjudicated case in history.

The difference between this case and others is that Mrs. Schiavo's cerebral cortex is liquified. All she has is a brain stem. She doesn't think, feel, have memories, see - she is a shell of a person. Her EEG is flat. In none of the other cases stated in that article was there a flat EEG.

[nothingshocksmeanymore]

4. Deek...in essence, I support the disability rights angle of this FOR

people with disabilities. Terri Schiavo can HARDLY be considered a person with a disability. That would be the understatement of the century.

I think it's the wrong move for the disability rights groups to be hanging their hat on a person so severely past the point of return.

I say this as someone who has worked with brain injured people. In fact, I think that arguing this case with Terri Schiavo DAMAGES your chances..it doesn't improve them.

[deek]

5. Disability advocates were involved in this

long before the antiabortion Rwingnuts.

Why do most people who kill their disabled family members get excused in this country? It's not only accepted, it's considered "honorable".

My ex revealed to me that when our daughter was born, he seriously considered killing us all "because it would be for the best". I told him if he had to kill himself because he couldn't handle it, fine--don't you DARE ever assume that you know what is best for us simply because you can't handle it.

Needless to say, he has never really viewed our daughter as a whole person and berated me for ever working with her on communciation skills, physical therapy (no--I know she will never walk or sit up by herself--it's considered "maintenance/prevention") and giving her a social life. It's typical of a very narcisstic and lazy personality.

I have an honestly tremedous fear this case will open the door to "mercy" killing of people with severe disabilities because it is inconvient or undesirable for guardians to provide the appropriate care and attention that is needed.

Next, people will consider those of us who nurture our loved ones to be selfish and "in denial of the disabilities" (as if!!). We will not be able to provide our loved ones with what they need, as they are "useless eaters" and a drain on the social programs set up to help our most vulnerable population.

Many people claim Terri is not disabled, but I find it interesting most of the people who have significant disabilites do see themselves in her.

[nothingshocksmeanymore]

6. Of course people with disabilities see themselves in her

so do people without disabilities. Do you think I favor disconnecting her feeding tube because I would WANT to linger for 15 years with no hope of recovery, no actual presence and increasing decay including more likely than not 75% bone density loss? Soon she will fracture simply from being turned in her bed.

If the only cause for disconnecting her feeding tube were her inability to feed herself do you think ANYONE on DU would be in support of it?

She is not living. She is existing.

Feeding tubes and respirators are disconnected on people every day in this nation. It has been two decades since Karen Ann Quinlan and a decade and a half since Nancy Cruzan and there has been no organized push to off the disabled.

I don't know what your specific disability is, but you are clearly not in a decade and a half long persistent vegetative state. That is obvious.

On edit..and I hope you realize I respect you very much and don't mean an iota of insensitivity. I chaired a walk a thon (including wheelchairs and walkers) for TBI patients for over a decade. Even the WORST case scenarios in that walkathon KNEW they were participating.

[deek]

7. thank you

for your sensitivity.

When I was a teacher, before I became a parent, I believed I knew a lot more than what I realized later. Being a teacher is nothing like being a parent.

I applaud those of you who do work with people who have disabilities, but working with people with disabilities and being a person with disabilities or a parent of a child with profound disabilities are very different.

I have been an parent/advocate for over 2 decades. I've run support groups, fought for services, presented at conferences, and other innumerable info/advocacy stuff.

I have met many families who have children with varying degrees of disability. Most are not as severe as my daughter, but some are more involved than she. I have been able to connect with most and have value for their personhood.

It is very true nondisabled people do not like to include us in "their" world. I've been told this by more than a few people--that the sight of my daughter disturbs them and their children. There are many personal accounts of people who are severely disabled being asked to leave public places because the sight of them "bothers" others.

I've read on here and other message boards, "Who would want to live like Terri?? Zero!!" I would not want to be homeless, diabetic, addicted, or a thousand other qualifiers, but that doesn't mean that those people have no right to life.

"Life is what happens to you while you're busy making other plans."
John Lennon

[nothingshocksmeanymore]

8. I believe she has a right to life. I don't consider the wasting existance

she has to be life.

No one would care at all if the decision were NOT to place a feeding tube in the first place, but her death would have been the same as it will be now.

This is why I am glad I listened to my father's physician when he argued against placing a feeding tube in the first place. It's 1000 times harder to remove one than to never insert it.

Since the time her feeding tube was inserted, Terri Schiavo has DETERIORATED not improved. Were there a scintilla of improvement, I'd be vociferously arguing with you.

In fact, the worst aspect of this case, is that the Republican party which has placed numerous hurdles in the way of people with disabilities has chosen to get behind this case when tomorrow they will be arguing to further dilute ADA.

Another HORRIBLE aspect of this case is that the AMA who is in bed with the Republican party classifies (in their 5th edition) a "persistent vegetative state" as a 90% disability ..can you believe that? 90%? what this does is cheat people left in one as a result of work injuries out of thousands of dollars.

[KamaAina]

9. Welcome to our forum, NSMA!

Your presence gives our fledgling forum some much-needed "street cred" at DU. Now if we could just convince Will Pitt to get on board (they did straighten that thing out with him, right?), we'd be in business!

If you're wondering: Do I, KamaAina, think the tube should go back in? Yes. But, until I'm installed in 'Iolani Palace as Planetary Emperor (any day now :-) ), do I think we should trample on the Constitution, decades of case law, and even, as has been noted, the repukes' precious "sanctity of marriage" to do it? In the words of the immortal David Spade, "No!"

[nothingshocksmeanymore]

10. Thanks for the welcome. Why do you feel the tube should be placed

back in? I'd COMPLETELY agree with you if there were ANY presence there or ANY HOPE of a presence in the future. Otherwise, I see this existing til she completely deteriorates as serving no one but the other family members who do NOT wish to confront her death.

If this were a case where there were ANY signs of brain activity (beyond breathing which is an INVOLUNTARY function) I would be screaming in the streets at your side.

This is a case where there is no hope. No function BUT FOR breathing. No presence..and god only knows the level of deterioration at this point. I make this decision not out of cost concerns, nor concern for her care, nor concern for anything but the artificial prolonging of an EXISTANCE with no other evidence of a life.

If this were an aged person in a persistent vegetative state, I doubt anyone would be making the case for keeping her alive.

Believe it or not, I care LESS about the constitutional aspect of this than I do the ethical aspects of keeping a body alive when the person is gone.

You and I KNOW the level of brain injury I have experience with...I would not argue to pull a feeding tube on a single ONE of those people...they were not in a PVS.

(btw..please don't mistake my passion for aggressiveness...you KNOW I adore you :D)

[KamaAina]

11. I'm not from Missouri, obviously, but show me anyway

that she is really, truly brain dead. The MRI the parents have asked for would be a BIG help. Bring incontrovertible evidence of her brain-dead status to the Palace :-) and the tube stays out. (This is Florida, remember: perhaps she marked an absentee ballot for Bush**? That'd be proof enough! :-) )

In the meanwhile, though, we must think of the many others who depend on feeding tubes. Think how they must feel when they hear some of the riper rhetoric from the right-to-die side. :scared:

Say, how are the Los Angeles Angels of Anaheim looking so far? :evilgrin:

[nothingshocksmeanymore]

12. Haven't paid a whit's attention to them thus far this year :)

I would favor the MRI as well. The only problem with obtaining the MRI was that the constitutionality of Jeb's intervention was challenged. Had they gone along with the request for the MRI or any of the items that were being recommended in re the Jeb law, they could have undermined their challenge to the law.

[Princess Turandot]

13. Re: MRI's-she had electrodes implanted..

into her brain in 1990 as one of the efforts to stimulate her brain in some way. Here is one website which seems to support keeping her on life support where that is mentioned:

http://journals.aol.com/justice1949/JUSTICEFORTERRISCHIAVO/entries/83

MRI's as I assume you all know use magnetic waves to do their scans.
The magnetic force is incredibly strong; the machines need 6 inch lead walls around them when installed.

You cannot have an MRI with metal on your body or in your body because if it's metal that reacts to magnetic waves, the machine will rip the metal right out of your body. My mother had tiny metal implants with radium in them implanted in 1970 as treatment for cancer and she was never allowed to have an MRI, even 30 years later.

[nothingshocksmeanymore]

14. OK then they'd have to go with CT scans

thanks

[DemBones DemBones]

16. Good article, deek. Too bad people aren't getting it that the

question is largely rhetorical and are merely offering their opinions on the Terri Schiavo case.

Looking beyond Terri Schiavo, Tom Harkin is right that we need a federal review.

What's wrong with local decisions? Maybe nothing. Maybe a lot. Looking at this case as an all-too-familiar example, Judge Greer repeatedly ruled for Michael Schiavo. Various websites have suggested the judge had ulterior reasons for this. One I came across recently suggested that Scientology may be influencing this case. If you know anything about Florida, you know that the Scientologists essentially own the town of Clearwater now and have tentacles throughout the area. The Schiavo case has all taken place in that area.

Maybe it's :tinfoilhat: but these website owners are onto the neo-cons and PNAC, too, so I'm not going to automatically rule out their accusation that Scientology -- which places no value on disabled lives -- is playing a role here. Maybe Scientology does control judges and other local officials. Such things are known to happen.

Here's another thing! The attorney representing Michael Schiavo is (or was) on the board of the hospice where Michael has kept Terri for the past year or more. (She's not terminally ill but she's in a hospice.) This hospice is part of a hospice chain that is tied in with the Hemlock Society people and the "right to die/ death with dignity" movement. There is a difference between people who honestly just want to not be hooked up to a lot of devices in their last days and the movement that promotes death and is allied with for-profit hospices. Some people want to profit from your death and mine, and to "encourage" you to die on their schedule.

I'm the sort of ornery person who objects to OB-GYNs who want women to give birth according to their schedules, rather than according to when the woman and her baby are ready, so naturally I also object to hospices wanting to control when and how people die. Hospice began as something to benefit people who were terminally ill, to keep them comfortable in their dying days, not to push them over the edge before their time. But as hospice became a commercial indutry, rather than a volunteer mission, some egocentric hospice personnel have taken it on themselves to determine when patients should die.

To sum up, we need a review organization for cases such as the Schiavo case and that review organization must be free of influence from the hospice industry, Scientology, or any group or person who believes that any severely disabled person is better off dead.

[Banazir]

17. Ugh, I knew the name Clearwater

was familiar from somewhere.

And there was an article saying something like "Is this the future of hospice?" floating around somewhere. Can't remember where.