Is Death Better Than Disability?

[DemBones DemBones]

At last, the media are taking a little notice of disability rights activists protesting the killing of Terri Schiavo. Monday night, NBC news showed (briefly) some footage of activists from Not Dead Yet! protesting outside the hospice where Schiavo is being starved and dehydrated. Protesters in wheelchairs got onto the driveway and lay there shouting "We're Not Dead Yet!"

In case you don't have it bookmarked, that website is http://www.notdeadyet.org

In an NBC print article that began with coverage of Laura Bush's comments and covered several other "angles" of the story, the last paragraphs deal with the voice of the disabled. (Better last than ignored completely, I suppose!)


Is Death Better Than Disability?

"Disabled activists are raising their voices as the final stages of the Schiavo drama play out. They said they're sending a message that she is one of them: a disabled person whose life is worthy of living."

"A few made a dramatic demonstration over the weekend, laying on the ground next to their wheelchairs outside Schiavo's Florida hospice."

"The groups want Congress to consider requiring federal courts to review cases where the wishes of a legally incapacitated person aren't written down and when family members disagree about whether to withhold food and water."

"They're also pushing lawmakers to drop proposed cuts in Medicaid, which many say would erode the quality of life for disabled people who can't afford their own care."

"Some activists hope to end what they see as a perception that it's better to be dead than live with a disability. That perception, said one, leads to discrimination."


The same article covered Jesse Jackson's visit to the hospice Tuesday.

Earlier Tuesday, the Rev. Jesse Jackson said Terri Schiavo's case "transcends politics and family disputes."

He was visiting the Florida hospice where the severely brain-damaged woman has gone without nutrients or water since March 18. Jackson called her treatment an "injustice" and said denying her a feeding tube and water is "unnecessary.

Schiavo's parents, Bob and Mary Schindler, invited the civil rights leader after he issued a statement last week calling for the woman's feeding tube to be reconnected.
Some demonstrators applauded Jackson when he arrived and shouted "This is about civil rights."


http://www.nbc5i.com/news/4326195/detail.html

[coloradodem2005]

1. She's way beyond disabled.

Disabled people can still effectively live. She just exists.

[Sandpiper]

2. Well, if Jesse Jackson says it's about civil rights

That just changes everything.

:eyes:

[Dookus]

3. to answer the question in your subject line....

It's up to the individuals involved. Self-determination is a basic right.

And no matter how many times you say it, Terri Schiavo's case is not a disability-rights case.

[Name removed]

4. Deleted message

Message removed by moderator. Click here to review the message board rules.

[Dookus]

6. Actually

I don't think Dembones is a right-winger by any means. But I think he or she is looking at the case through a narrow prism of disability rights, and some other disability rights activists are doing the same thing.

I still maintain that self-determination is a right we should all support, even disabled people. Legally and morally, Michael Schiavo has demonstrated that it was Terri's wish not to be kept alive in this state. Unsurprisingly, that wish is shared by almost 90% of Americans. Even if one doesn't trust Michael Schiavo, it is still FAR more likely that Terri would want this than to be kept alive indefinitely in a PVS.

[DemBones DemBones]

21. Thanks for not thinking I'm a right-winger, Dookus. I maintain that it is

a liberal, progressive stance to oppose killing of all types.

I also maintain that it is essential for disabled persons to look at everything through what you call a narrow prism of disability rights. No one else is looking out for our interests. No one else cares,

I am very troubled that Terri Schiavo was killed because of her profound disability.

[mirandaod]

5. I would think that the "Futile Treatment" Laws

like the one Bush signed in Texas would be very threatening to the disabled community. As I understand it, those laws can supercede the family's wishes to continue treatment, and maybe even the living will of the patient.
But I can't see how the Schiavo case is in the same vein, at all. That's strictly a family matter.

[liberal43110]

7. I Actually Support the Futile Care Laws

Granted, Bush is a major-league hypocrite, on this issue as on many others. But I actually think Futile Care laws like the one he signed into law in Texas are completely reasonable. Just like I ending care in the Schiavo case is completely reasonable.

[mirandaod]

11. I can understand how scary these laws would be

to disabled people. To have someone unrelated to you decide you had to go, when you want to stay, and actually have it documented in a living will.
At the end of the day, it all comes down to having the money to pay. If you're rich enough, you can have what you want.

[Selteri]

12. I suport the futile care laws too, there are times when doctors are wrong,

BUT - BUT - BUT! there are cases that have become futile, not when the money has run out. There needs to be a proper chain of assessment by not just doctors in the hospital, but an independent panel that is appointed by respected medical authorities that includes

A religious ethicist of their denomination - if not religious this can be replaced with a scientific ethicist

A social ethicist

A Scientific ethicist

A physician who's expertise is directly relevant

A physician who's area of expertise is in the general area of the person

A physician who's specialties are in rehibilitation

A Lawyer or judge

An Artist or Philosopher of some sort with no medical experience (The wildcard)

I know convening 8 people isn't that easy, but it would make an excellent form of a group to oversee decisions when it has come to a point of cases like this.

[jwirr]

17. Why would you support the action of a stranger

in taking the life of another? Would you have supported the eugenics/nazi sterilization/death decisions? If by chance you do not know what I mean by the eugenics decisions - they took whole families and forced sterilization for several reasons, including disabilities, color, poverty and alcoholism.

[Selteri]

8. She's in a PVS, you have one doctor who the MAYO Clinic

admonished and who has lied about his own credentials.

I feel sorry for the people being abused in this case, but this is about usurping rights that have been firmly established and is a much much deeper case that goes into greed and potentially psychological problems with the Schinlders.

They need counceling, they need to stop selling everything, including a list of the people who helped them to advertisers, illegal pictures.

They keep lieing and looking for hope where there is non, the autopsy will prove this beyond a reasonable doubt.

Teri died of Bulimia 15 years ago, she should have been allowed to pass when the doctors suggested after 3 months when they pulled a null EEG from her, but the schindlers and Schiavo chose to fight for her.

Everything collapsed when money got involved into it, then it became a matter of both pride and the inability to reconcile with reality. This is a terrible case that is being abused and will continue.

So please, stop making it sound like it's about a different subject. The Media needs it's feeding tube disconnected and to cover the real news... with real investigation, just like it used to a long long time ago.

[sandnsea]

9. Inability vs. disability

Big difference. Terri Schiavo is incapable of living in any way, shape or form and never ever will be.

[Kerrytravelers]

10. Terri isn't disabled... she's been in a vegetative state for 15 years.

No wheelchair, appratic device, breathing machine nor articifial devices are going to allow her to communicate not be aware of her surroundings. It's over and they have forced her body to continue working even though her body, left on it's own, wouldn't still be functioning.

A disabled person (I work with special needs children) may need assistance, but they are very capable people. What notdeadyet is protesting over, I have no idea. This in no way affects the ADA or any other disability issues.

[Divernan]

13. The disability advocacy groups are trying to grab the spotlight

and milk it for their own purposes. And why shouldn't they? If DeLay and Falwell can claim that the Schiavo case is analagous to their own situations, let's everybody jump in.

[KamaAina]

14. Actually, many of us are deeply concerned about being seen with the RW

as you might well imagine!

This is becoming a hot-button topic within the disability community, as evidenced by this piece in Ragged Edge, sort of our Time or Newsweek (but far more useful!):

http://www.raggededgemagazine.com/focus/byzekprogressives.html

I'd say the majority of us in the disability community who support Not Dead Yet's positions are pro-choice. Many of us are gay or lesbian, including some in NDY leadership roles. Many are atheist or agnostic. Who we are collectively ought to be enough to differentiate NDY from the pro-life camp. But it seems -- seems, I say: I'm not sure this is accurate -- that progressive groups are so locked into the debate as defined by the pro-lifers that they're not willing, or are unable, to give weight to our perspective on these issues. Even though these issues primarily affect our community more than any other group of people.

Personally I don't think we try hard enough to articulate our perspective to progressive leaders. I think this is because it puts us in the uncomfortable position of defending our lives. But then along come these pro-lifers who learn our lingo and dance our dance steps and it gets even more confused....

The leader of national NDY was even more concerned than I was about me speaking at the same venue as a prominent pro-life leader, but we worked on my remarks and thought we found a good balance. But I still worry that anyone who caught the coverage went away thinking NDY is allied with pro-life groups, and that we share a common perspective, which we do not. I'm sure you see the dilemma.

So what do I think about Terri Schiavo's situation? I think the Schindlers' pain led them to become pro-life patsies and their pro-life advisors ought to be ashamed of themselves for how they've used that family's anguish to push their political agenda.

Hmmm... doesn't sound like a wingnut to me... then again, neither is Jesse Jackson. His position, in fact, is closer to ours than to the anti's: that it is a civil rights issue.

[undergroundpanther]

15. Good Post Kick!

[Sugarbleus]

16. Another kick....good post

I am not going to react to responses, not...going...to...react..

:scared:

[readmoreoften]

18. Is death better than disability?

My personal view on MY life is, as a writer, my ability to think and communicate (in any form, even eyeblinks) is who I am. Being in a persistent vegetative state is my darkest nightmare. If I could envision hell it would be an eternal PVS state, so 15 years of it terrifies me. I don't consider this a disability, I consider this total inability and I would rather be dead than kept alive to be a living corpse for my mommy and daddy to play dolly with.

But I would also respect anyone else's wishes. My mother does not want to be taken off artificial life support even in a PVS and I respect her wishes. I hope that she would respect mine.

[deek]

19. so much for peace, love, & understanding.....

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=104&topic_id=3441325&mesg_id=3441325

[pop goes the weasel]

20. message boards

aren't very good venues for discussion. At least on the political ones, most posters most of the time tend to be more concerned about staking out the politically correct position and denouncing all who disagree than in examining issues in any depth.

What troubles me most, though, is the absolute refusal of so many on DU to read anything that might challenge their assumptions. Just to make sure I don't get into the same habit, I'm going to read Caplan this next week.

[DemBones DemBones]

22. Well said. I agree that it's important to read the other side.

But you do know Caplan is tied to the futile care laws as an expert consultant? Presumably receiving money to say who can be killed "ethically".

The world has gone crazy.

:crazy:

[pop goes the weasel]

23. that's why I'm going to read him

I want to thoroughly read the liberal bio-ethicist point of view. I went to the library and looked at the small collection of bio-ethics works--they are all liberal bio-ethics. No leftist bio-ethics, no conservative bio-ethics, not even any faith-based bio-ethics. And of course, no perspectives from the disability community. That right there tells me I need to know more about the monolithic perspective that informs most people's understanding of disability issues, including end-of-life issues.

[Emperor Norton]

24. CodeBlueBlog Issues $100,000 Challenge to Terri Schiavo Neurologist Expert

http://codeblueblog.blogs.com/codeblueblog/2005/03/codeblueblog_is.html

Who Wants To Be A Millionaire?

To prove my point I am offering $100,000 on a $25,000 wager for ANY neurologist (and $125,000 for any neurologist/bioethicist) involved in Terri Schiavo's case--including all the neurologists reviewed on television and in the newspapers who can accurately single out PVS patients from functioning patients with better than 60% accuracy on CT scans.

I will provide 100 single cuts from 100 different patient's brain CT's. All the neurologist has to do is say which ones represent patients with PVS and which do not.

If the neurologist can be right 6 out of 10 times he wins the $100,000.


I Said What I Meant, And I Meant What I Said

My points are what I first said about the image from Terri Schiavo's CT scan:

1) It is NOT as bad as the neurologists and bioethicists play it up to be; and,

2) There are many elderly patients with various levels of mental functioning who have severe atrophy that is difficult to distinguish from Terri Schiavo's atrophy


I stand by what I said. And I'm putting my money where my mouth is.




Posted by Doctor CBB on March 29, 2005 at 11:35 PM | Permalink

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[carl_pwccaman]

25. Standpoint or Rights?

I think the standpoint of disabled or faithful or leftist or liberal or conservative or rightist or scientist or doctor, can be important in sorting things out, I mean the people who are potentially effected the most have a standpoint that does need to be listened to, but there is more at issue.

I think the standpoint of religion, cost-cutting, politics, and medicine are all inherently flawed on this issue. Religion too often presupposes authoritarianism and disregards an individuals wishes, by default. Cost-cutting does not necessarily consider correctly whether or not to look at 'excessive' in terms of money instead of in terms of individual human beings who have wishes of their own, medical ethics, etc. Medical ethics can presume the doctor as authority, using a crisis model to give unlimited authority to medical authorities, lab results, and scientists, regardless of anyone else's wishes. The 'official' standpoint of the disabled can be manipulated or bought out, or influenced by top-down conferences fudned by the government, etc., too.

Yet even so the standpoint of the disabled really does need to be heard and given utmost respect on this one. But what if a particular response has catch-22's that are not acknowledged and udnerstood? How to sort this stuff out?

At the National Mental Health consumer-movement conference in Denver, a keynote presentation urged that for PR purposes, presenting people who are working, who don't look stereotyped, is helpful. I felt, and others at the conference also felt, that one of the issues is that people need to respect the human rights of people who may in fact look stereotypically mentally ill, or else people really won't 'get it' about their prejudice and discrimination. If our society cannot affirm and respect and treat with decency, those who cannot work, whose mouths move oddly becuase of side-effects of medication, who talk about bizaare subjects, don't bathe, then that is an issue, and it isn't going to be addressed by acting like disabled people who assimilated into our society by getting jobs and not demonstrating certain symptoms, have earned respect or decent treatment.

[Emperor Norton]

26. carl the usa doesnt know the first thing about rights for the mentally ill

or respect or decent treatment

all the goddamn politicians, d and r s , do is compete who can be a bigger bastard like to retain the death penalty
to think they actually plan the deaths of innocent people on death row ,and also lock up people for 10 ,20 ,30 years or life that in other countries would get maybe nothing or a week in jail

usa is a pile of shit on morals and law and order and justice